DISABILITY AND SECONDARY CONDITIONS FOCUS AREA 6  REPORTS AND PROCEEDINGS: Implementing the Vision Forum Atlanta, Georgia, September 20-21, 2002 AND Vision for the Decade Symposium Atlanta, Georgia, December 4-5, 2000
(Web Version August, 2003)

The opinions expressed herein are the views of the forum and symposium participants and do not necessarily reflect the official position of the US government.  Trade names are used for identification only.  They do not imply endorsement by the forum/symposium sponsors - Centers for Disease Control and Prevention, The Public Health Service, the US Department of Health and Human Services, National Institute on Disability Rehabilitation Research or the US Department of Education.
 
TABLE OF CONTENTS	
This document is about 318 pages long depending on the viewing format.

Implementing the Vision Forum, 2002
Opening Remarks
Jos F. Cordero, MD, MPH
Matthew Guidry, PhD
David W. Keer

Executive Summary, Donald J. Lollar, EdD
Summary of Recommended Action Steps

Paper on Participation, David B. Gray, PhD
Workgroup Recommended Action Steps

Paper on Assistive Technology and Accessible Environments, Richard Duncan, MRP 
Workgroup Recommended Action Steps

Paper on Health Indicators for People with Disabilities, Donald L. Patrick, PhD, MSPH Workgroup Recommended Action Steps

Paper on Caregiving and Personal Assistance Services, John E. Crews, DPA 
Workgroup Recommended Action Steps

Paper on Emotional Support, Sonny Roller, MA	
Workgroup Recommended Action Steps

Paper on Children and Youth with Disabilities, Patricia Sullivan, PhD	
Workgroup Recommended Action Steps

Forum Participants (alphabetical listing)

Vision for the Decade Symposium, 2000
Foreword, David Satcher, MD, PhD 
Opening Remarks, Donald Lollar, EdD 

Executive Summary, Donald J. Lollar, EdD 
Summary of Workgroup Reports

Workgroup Reports for HP 2010 Objectives:
6.1     Standard definition of people with disabilities in data sets 
6.2     Feelings and depression among children with disabilities 
6.3     Feelings and depression interfering with activities among adults with disabilities 
6.4     Social participation among adults with disabilities 
6.5     Sufficient emotional support among adults with disabilities 
6.6     Satisfaction with life among adults with disabilities 
6.7     Congregate care of children and adults with disabilities 
6.8     Employment parity 
6.9     Inclusion of children and youth with disabilities in regular education programs 
6.10   Accessibility of health and wellness programs 
6.11   Assistive devices and technology 
6.12   Environmental barriers affecting participation in activities
6.13   Surveillance and health promotion programs 

Closing Remarks: Where do we go from here? Raymond Seltser, MD, MPH 

Symposium Participants (contact information by workgroup) 

APPENDICES
I. Healthy People 2010 Disability and Secondary Conditions 
II. Glossary of Abbreviations and Acronyms 
III. Leading Health Indicators 
IV. HealthierUS: The Presidents Health and Fitness Initiative (State Data) 
V. Healthy People 2000 Disparities Table 1 
VI. Healthy People 2010 Disparities Table 2 

Implementing the Vision Forum
Atlanta, Georgia, December, 2002

OPENING REMARKS

Jos F. Cordero, MD, MPH
Assistant Surgeon General
Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
US Department of Health and Human Services

I want to welcome you to this disability forum.  I am Jos Cordero, the Director of the National Center on Birth Defects and Developmental Disabilities.  

Weve just completed our centers first national conference and are excited about the possibilities.  The Healthy People 2010 agenda is an ambitious one even prior to including the health and well-being of people with disabilities.  Recognizing that people with disabilities have many health concerns similar to people without disabilitiesthat is, exercise, nutrition, smoking, and alcohol use?is critical.  Focus Area 6, Disability and Secondary Conditions, adds the realization that there are unique issues of health and well-being for people with disabilities and caregivers.   

This forum is meant to bring visibility to the issues of health and well-being for people with disabilities.  It is also intended to leverage that visibility so we can build partnerships to achieve the ambitious objectives that will improve physical and emotional health and community participation, and will eliminate environmental barriers across the life span.   

This is a working forum.  I encourage you to speak your mind, listen to your colleagues, come to consensus in your workgroups, and leave with a commitment to act.  I want you to know that as you work, our national center wants to be your partner?in data collection, building alliances, and improving the programs and policies to improve the health and well-being of people with disabilities.

Matthew Guidry, PhD
Deputy Director for External Affairs
Office of Disease Prevention and Health Promotion
US Department of Health and Human Services

On behalf of the Office of Disease Prevention and Health Promotion (ODPHP), I want to thank you for inviting me to be a part of this initial forum and to reconfirm the commitment of the Assistant Secretary for Health and the Director of ODPHP to the process.  I want to take this opportunity to thank Don Lollar, the co-lead of this project, and his staff for the dynamic leadership they provide to the Healthy People 2010 Focus Area, Disability and Secondary Conditions. We at ODPHP deeply appreciate the outstanding work you do to enhance the applicability of Healthy People 2010 objectives to programs and services for Americans with disabilities.

It is important to ODPHP to have disability as a focus area and disability as a demographic variable included in Healthy People 2010.  I want to also recognize the tenacious leadership my former colleague, Debbie Maiese, provided to get this focus area included in Healthy People 2010.  Debbie provided the primary impetus for including Focus Area 6 in the document.

As all of you know, Healthy People 2010 has two goals, ten leading health indicators, twenty-eight focus areas, and 467 specific developmental and measurable objectives.  Those components combine to make Healthy People 2010 the crown jewel for setting standards to measure disease prevention and health promotion initiatives.  

The framework is a tool to use in shaping initiatives and establishing indicators at many levels to determine accountability in improving the quality and years of healthy life, and for eliminating health disparities prevalent in our nation.  Healthy People was built through the consensus process.  It represents the collective input from many constituent groups and engaged stakeholders.  It is important, outside Health and Human Services, to have co-sponsor engagement and support in building the coalition to address Healthy People 2010 indicators and objectives.  As each focus area in Healthy People 2010 moves forward, it raises all the focus areas in Healthy People 2010, including leading health indicators, and as that gets visibility, it helps every focus area.

We are planning the Healthy People 2010 Summit, which will be held at the Baltimore Waterfront Marriott Hotel in Baltimore, Maryland on April 15-16, 2003.  The objective of the Summit is to enhance and expand the environment that facilitates the strengthening of national, state and local implementation of Healthy People 2010 through sharing of innovative ideas and exemplary programs.  We hope all of you will attend and participate.

David W. Keer
Program Specialist 
Co-chair, Interagency Subcommittee on Disability Statistics 
National Institute on Disability and Rehabilitation Research 
US Department of Education

Steven James Tingus, Director for the National Institute on Disability and Rehabilitation Research (NIDRR), sends his greetings to those here to help plan the implementation of Healthy People 2010, Focus Area 6.  He very much wanted to be here but had a major conflict on his calendar. 

The National Institute on Disability and Rehabilitation Research has been a steady partner in the development of the Healthy People 2010 Focus Area 6 program.  We consider this focus area historic and critical.  It fully recognizes the role of disability as a variable to be considered in public health discussions as well as in society in general.  

Healthy People 2010 continues progress toward a holistic view of disability, rather than a health only view.  This is very much in tandem with the National Institute on Disability and Rehabilitation Research long-range plan and, now, with the President's New Freedom Initiative (NFI).  The plan and the NFI are the cornerstones for the National Institute on Disability and Rehabilitation Research as we address the near- and longer-term needs of people with disabilities.

Whether we discuss education, employment, or wellness, our goal is parity?parity for people with disabilities in achieving maximum potential.

The NFI grounds our commitment to the fulfillment of the Supreme Court's Olmstead decision.  The HP 2010 document, in the Disability Focus Area and elsewhere, provides means to evaluate the full implementation of Olmstead.  It encourages people living in the community whenever possible. It identifies areas in which we must allocate resources to achieve that goal.  

We have long supported programs that provide assistance to people with disabilities and that ensure community integration, such as research and provision of assistive technologies and improved health care delivery.  We have added new resources to our commitment to quality personal assistance services.  Our overall work associated with independent living will now be enriched within our portfolio.  

We look forward to the outcomes of this forum.  We anticipate a long and productive relationship with the CDC in meeting the goals of the Disability Focus Area and ensuring participation to the greatest extent possible for all people with disabilities.

EXECUTIVE SUMMARY

Donald J. Lollar, EdD
Senior Research Scientist	
US Department of Health and Human Services
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities 
Division of Human Development and Disability 

Healthy People 2010 (HP 2010) provides the agenda for improving the health of all Americans during this decade.  The health of people with disabilities is targeted in two ways.  First, a chapter/focus area (Disability and Secondary Conditions) was designed specifically to address the health and well-being of this population.  Second, disability status is included as a demographic variable along with ethnicity and gender in objectives throughout HP 2010.  These two approaches allow both a comparison of health states between people with and without disabilities in order to assess health disparities, and an analysis of needs specific to this population.  Because this is the first time, in the 20-year history of the Healthy People agenda, that people with disabilities have been included to a substantial degree, there are significant opportunities and obstacles to achieving these objectives.  The promise is great, the challenges substantial.

Since the inauguration of HP 2010 in January 2000, two meetings have provided focus for the objectives addressing the health and well-being of people with disabilities.  The first was a symposium in December 2000.  Eighty individuals representing thirty-seven non-governmental organizations, twenty-five universities, and state and national public health and education personnel divided into small groups to answer questions about each of the thirteen objectives in the Disability and Secondary Conditions Focus Area.  The questions focused around data for the objectives, interventions that address each objective and partners who might work toward achieving the objectives.  The proceedings of the symposium, Vision for the Decade, provided the foundation for this second report, Implementing the Vision.  Both reports are included in this volume.   

In September 2002, the National Forum on Disability and Secondary Conditions convened with 150 participants.  The Forum was organized around six themes that integrated the needs from the thirteen chapter/focus area objectives and the related health objectives from other focus areas.  The themes included children and youth, participation in society, environmental issues, caregiving and long-term care, emotional support, and health.  Each of these six were divided into data and policy/program groups, resulting in twelve workgroups to answer the question: What are two or three action steps that we can take during the next 2-3 years to move us toward achieving the objectives of Healthy People 2010 for people with disabilities?  Summaries of the workgroup reports follow each of the six thematic papers that are used as catalysts for discussion.  

The thirty-one action steps approved by the participants are attached to this Executive Summary.  The 12 workgroups identified action steps in crosscutting areas: education/training, coordination/data, policy, and programs, and children.  An education/training group will pursue developing new or disseminating already-existing consumer-friendly information that addresses, for example a) leading healthy indicators for people with disabilities, b) caregiving, and c) emotional support for people with disabilities.  Coordination of data activities will be the focus of a second group, emphasizing the inclusion of disability status in relevant data sets.  Policy emphases for a third group will focus on environmental factors that encourage or inhibit participation.  A fourth group will work to identify best and promising programs that can improve the health and well-being of people with disabilities.  Differences, however, do exist between children and adults due to development, the role of the family, and environmental settings.  For these reasons, there will be a childrens group to address data, policy, programs, and training for children and youth with disabilities.  

These five on-going groups will provide the basis for activities over the next two years until an update to the Forum is held in 2004.  The Centers for Disease Control and Prevention (CDC) and the National Institute of Disability and Rehabilitation Research (NIDRR), as co-leaders of Chapter/Focus Area 6, will provide the infrastructure needed to assemble the groups and assist them in their work.  These activities are consistent with and will contribute substantially to achieving the New Freedom Initiative alongside Healthy People 2010.

Each step in this process has required energy, vision, and a belief that working on small steps can contribute to achieving larger objectives.  We continue to believe in this process and the strength of the disability community to accomplish these goals.

SUMMARY OF RECOMMENDED ACTION STEPS

Participation  Policies and Programs

1. Support and extend already-existing activity between government and non-government organizations to a) identify activities in cities or neighborhoods that provide models of accessibility for and participation by people with disabilities, and b) work cooperatively to promote a participation agenda with major decision makers in communities, including Chambers of Commerce, faith-based groups, hospitality industry, transportation and other community services, universities, CILs, recreation and state park staffs, city planners, architects, etc.  Develop and maintain a Web site featuring information on such model communities.

2. Develop a campaign to amend the US tax code to include tax credits (not deductions) for disability-related expenses (home modifications, van conversions, functional fitness machines, etc.) that increase community participation and integration.

Participation  Data

3. Identify pertinent measures of community participation and the best methods of collecting indicators of community participation.  These might be characterized by using a nationally-representative sample across the life span, and allowing comparisons of the participation of people with and without disabilities.

4. Establish relationships with agencies and organizations responsible for collecting this information so that appropriate items to measure community participation and/or identify people with disabilities are included.

Environment  Policies and Programs

5. Develop a program to educate all government-funded health programs about accessibility regulations, focusing on improving adherence.

6. Develop the principles of environmental and program accessibility, as well as technology and universal design, into curricular modules that can be used with professionals and trainees.

7. Work to adapt modules from action step #2 (above) into materials to educate communities as well as people with disabilities about the relationship between environmental factors and community and social participation.

Environment  Data

8. Use data analyzed from the 2002 National Health Interview Survey (NHIS) and those state surveys that have environmental questions to identify specific areas for intervention in communities, such as transportation and work policies, and disseminate this information through federal and community networks.

9. Identify environmental checklists already developed or currently being developed that can be used to assess disability-friendly characteristics, and identify networks for distributing and using the evaluation tools.  Specifically, continue collaboration and expansion of the National Center on Physical Activity accessibility tool to evaluate and improve access to fitness and recreation settings by people with disabilities.

Health Indicators - Policies and Programs

10. Establish an ongoing workgroup to create coordinated activities around the leading health indicators at the national, state, and local levels for people with disabilities, specifically those related to a Healthier US.  The first priority for the group is to develop new or tailor already-existing consumer-friendly materials, e.g. exercise regularly, dont smoke, and schedule preventive health care, and implement a distribution system for them.  

11. Integrate issues for people with disabilities into existing disaster preparedness and emergency response plans.   

Health Indicators  Data

12. Establish a workgroup to monitor efforts to measure disability status and coordinate efforts to include such a measure in relevant HP2010 tools.  

13. Use the same workgroup to establish liaisons with relevant HP2010 focus areas to identify current disability identifiers, where such exist, and include these identifiers in analyses of sub-populations.

Caregiving/Personal Assistance Services  Policies and Programs

14. Create standard terms in the field of caregiving, designating appropriate distinctions among various types and providers of caregiving, such as those who provide care because of an emotional bond with the person needing care and those for whom it is a job or career.  

15. Develop an agenda to eliminate the shortage of personal care workers (home care aides, Personal Assistance Services [PAS], etc.).  Create career paths including increased training and education, improved pay, and other appropriate benefits.

16. Work with states to enhance their efforts to move children and adults into community-based living, consistent with the Olmstead decision.




Caregiving/Personal Assistance Services  Data 
Draft 12/18/02
17. Communicate and cooperate with agencies and organizations to develop and field questions on caregiving in national and state surveys.

18. Analyze and broadly disseminate currently available data on caregiving and explore future national and state-based data on caregiving across the life span.

19. Explore the use of other data sets to collect caregiving information, such as those for individuals with developmental disabilities and national and state education data sets.    

Emotional Support ? Policies and Programs 

20. Establish a coordinating committee to identify health resources addressing behavioral health of people with disabilities.

21. Develop an educational campaign to address behavioral and emotional health needs, using HP2010 objectives 6.3, 6.5, and 6.6 as leverage.

22. Identify model behavioral health programs that show effectiveness of interventions for people with disabilities and identify ways to increase access to those programs.

Emotional Support  Data

23. Include a psychometrically strong item (or items) on emotional support in both the National Health Interview Survey (NHIS) and Behavioral Risk Factor Surveillance System (BRFSS) as well as encouraging its use in the NOD/Harris survey and other surveys that include people with disabilities.

24. Over-sample and make accommodations for respondents with disabilities in surveys measuring emotional needs and supports of people with disabilities.

25. Fund methodological studies of the validity, sensitivity, and specificity of measures of depression and other psychosocial concepts, and evaluate the effectiveness of the question item relating to "receiving emotional support" that is currently used in several surveys.

Children and Youth  Policies and Programs

26. Create a workgroup to coordinate state and national monitoring and implementation of all HP2010 objectives for children and youth with chronic conditions/disabilities. 

27. Develop and/or provide information, training, and support to families of children and youth with disabilities, including anticipatory guidance, caregiving, and family balance. Coordinate these efforts with already-existing activities.

28. Create and/or identify models that states can use to integrate children and youth with disabilities into government-funded programs related to school health, physical activity, recreation, social participation, nutrition, and other public health activities.

Children and Youth  Data

29. Review all Healthy People 2010 objectives to identify those relevant to children with disabilities, addressing issues of screener questions and age cut-offs.

30. Clarify and resolve research issues: (1) identifying children with disabilities on surveys, (2) identifying youth transitioning out of high school, and (3) using a consistent approach to age cohort.

31. Ensure that professionals beyond the health area, including educators, social workers, community organizations, and human service providers focusing on children, are included in subsequent HP2010 activities.

Paper on Social Participation and Employment of Adults with Disabilities

David B. Gray, PhD
Washington University School of Medicine
Program in Occupational Therapy
Washington University
St. Louis, Missouri

Healthy People 2010, Focus Area 6 Objectives:

Objective 6.4:  Increase the proportion of adults with disabilities who participate in social activities 

Objective 6.6:  Increase the proportion of adults with disabilities reporting satisfaction with life.  

Objective 6.8:  Eliminate disparities in employment rates between working-aged adults with and without disabilities

Abstract

The goal of the HP 2010 Chapter/Focus Area 6 sections concerning disability regarding social participation and employment is to increase the proportion of adults who participate in work and social activities to the participation levels reported by people without disabilities.  In order for people with disabilities to participate in social activities, they need to maintain their own health and live in environments that promote active engagement in family, work, and community life.  Yet, poor access to health care facilities; lack of medical devices that can be used to examine and treat their illness, injury, or disease; and limited number of health and wellness programs all contribute to body states that can make participation in important life events fatiguing, stressful, and unsatisfying.  Compounding the limiting influences of vulnerable and variable health conditions on participation, people with disabilities often face unreceptive environments where social events are held and where people are employed.  The following factors all diminish social participation by people with disabilities: lack of personal attendants, inaccessible housing, poor transportation, inadequate assistive technologies, segregated and inferior educational opportunities, severely limited employment opportunities, minimal government financial and medical support, impoverishing eligibility requirement for government aid, tax code penalties, and uninformed immigration and naturalization service policies.  These barriers to participation reflect the social attitudes of both the general public and even some people with disabilities.  Taken together, all these factors provide a formidable task for HP 2010 and those agencies committed to improving the heath and participation of people with disabilities.   

Full Paper on Social Participation

Introduction  
The purpose of this presentation is to summarize the two sections of the publication Disability and Secondary Conditions: Vision for the Decade, which were based on discussions held at the Healthy People 2010 Chapter/Focus Area 6 meeting held in Atlanta, Georgia in December 2000.  The focus will be on the level of social participation and rate of employment of people with disabilities using the categories of data needs, program implementation, and policy implications to structure the materials.  The guiding principles set forth in the introduction to HP 2010 Focus Area 6 provided background for the discussions and this paper.  Inclusion of all people with disabilities as full participants in major life activities, use of the International Classification of Functioning, Disabilities, and Health (ICF) framework, and pragmatic initial action steps were used in sorting and selecting comments made in the Vision for the Decade document.1

The goal of the HP 2010 chapter/focus area sections concerning disability regarding social participation and employment is to increase the proportion of adults who participate in work and social activities to the participation levels reported by people without disabilities.  In order for people with disabilities to participate in social activities, they need to maintain their own heath and live in environments that promote active engagement in family, work and community life. Yet, poor access to health care facilities; lack of medical devices that can be used to examine and treat their illness, injury or disease; and limited number of health and wellness programs all contribute to body states that can make participation in important life events fatiguing, stressful, and unsatisfying.  Compounding the limiting influences of vulnerable and variable health conditions on participation, people with disabilities often face unreceptive environments where social events are held and where people are employed.  The following factors all diminish social participation by people with disabilities: lack of personal attendants, inaccessible housing, poor transportation, inadequate assistive technologies, segregated and inferior educational opportunities, severely limited employment opportunities, minimal government financial and medical support, impoverishing eligibility requirement for government aid, tax code penalties, and uninformed immigration and naturalization service policies.  These barriers to participation reflect the social attitudes of both the general public and even some people with disabilities.  Taken together, all these factors provide a formidable task for HP 2010 and those agencies committed to improving the heath and participation of people with disabilities.   

General discussion
As Charles Darwin pointed out, humans have evolved as a species to use social activities to moderate and protect against destructive acts of the environment.2  Social participation or group activities (hunting, gathering, and parenting) gave those who cooperated well with others and developed altruistic behaviors (i.e., put the good of the group before their own individual survival) a reproductive advantage, ensuring that their genes were passed from generation to generation.  These group survival behaviors are manifest in our society's positive response when polices and programs provide opportunities to people with different abilities and inabilities to participate together in major life activities.  The quality and quantity of social participation by people with impairments and limitations provide markers for the success of these social policies and programs.  For individuals who are categorized as disabled, the policies and programs provide the framework for their access to health care and inclusion in community activities.

The breadth of possible social activities available for use in monitoring participation levels is wide and includes activities from assisted personal care to attending sporting events.  Summary measures of all social activities have the virtue of being simple to collect and analyze.  However, they may provide such a global, inclusive score that taking action to increase participation is difficult since most humans do some type of activity.  Participating in activities represents different values among people.  Establishing targets for improving social participation has proved to be a difficult task but several suggestions were made to frame future efforts, including changing the survey questions used to monitor participation levels, removing environmental barriers to participation, and changing social policies to enable full participation. 

One specific domain of participation that holds preeminence in our society is the availability of work, ability to work, opportunity to work, and accessibility of work.  Full participation for people with impairments and limitations in the workforce is a good indicator of inclusion in society for those of working age.  Employment often brings increased life satisfaction, more choice, and greater autonomy, which are the cornerstones of interdependent living.  Once again, however, selecting the unit of analysis for tracking employment of people with disabilities has proved to be challenging but possible.  Many suggestions were made in Vision for the Decade to change programs and policies for the purpose of addressing the many factors that influence work opportunities for people with disabilities. 

Program Concerns
Reaching the goals of full social participation and equity in employment require that current programs available to people without disabilities be made receptive to including people with disabilities.  In general this involves removing physical and social barriers to community and work sites with the provision of additional or supplementary programs to provide equal opportunity for engaging in the range of activities available to people without disabilities.  Clearly, new buildings and programs should embrace the principles of universal design to maximize equal opportunity for full participation.  For those existing structures and programs, barrier removal needs to be accomplished. 

Many barriers prevent the goal of increasing social activities among adults with disabilities (Objective 6.12), including inadequate transportation, architectural barriers, work-site rules, attitudes, single modality communication, health conditions, inadequate housing stock, and inaccessible educational opportunities for advanced training.

To address these issues, government at the federal, state, and local levels should provide leadership in implementing full access to buildings, programs, and services.  Best practices for providing full participation in work by the for-profit sector need to be discovered and made known in order to bring to bear the cutting edge of the private sector entrepreneurship approach to meeting the goal of full participation in social and work activities.  Making assistive technology devices available will provide a significant boost to these goals (Objective 6.11).  For example, removing barriers to accessing Web-based information transfer through regulatory and incentive procedures would provide increased opportunities for many people with disabilities to work and engage in leisure activities not conceivable even a decade ago.  Further, advanced mobility devices may allow access to work sites, homes of friends, community centers, and travel that have been heretofore impossible for people with mobility impairments and limitations.  

A key to improving participation in social and work activities is the maintenance and even improvement in the health of people with disabilities.  One major step in achieving this goal is to provide training to health care professionals in the specific needs of the different conditions found in people with disabilities.  Cleary, the inaccessibility of hospitals, physician offices, clinics, exercise centers, and other health-related facilities limits full participation by people with disabilities and each such program needs to address making their facility more receptive to serving people with disabilities.  

Improving receptivity includes provision of interpreter services, making site changes to comply with the Americans with Disabilities Act (ADA) accessibility standards, and offering training for employees and community members on best practices for interacting with people with disabilities. 

Improving work programs will rely on employers and public accommodations complying with the ADA.  Work-site access and accommodation are central to improving employment but so are work-site personnel rules, supervisor awareness, and the availability of appropriate assistive technology devices.  Essential to any improvement in employment baseline rates will be the improvement of the transportation system to get employees to and from the work site.  Career training rather than job placement should be the goal of revitalizing vocational rehabilitation programs.  Providing health benefits, tax credits, advance training, and other incentives will provide people with disabilities with a safe and profitable route to employment. 

Summary of Program Concerns
We should support the enforcement of current legislation requiring most every program relevant for social participation to provide reasonable accommodation for making work, school, and public sites accessible.  For example, enforcing Section 508 of the Rehabilitation Act will improve provision of communication devices used in social participation in government programs.  Applying the ADA provision that employers provide building access and programmatic accommodations may improve participation in employment by people with disabilities.  Implementing the cost decision regarding Olmsted will increase the numbers of people with disabilities who live and participate in the broader community.  Implementing the Ticket To Work and Employment Centers described in the TWWIIA will enable people who are not working to obtain employment without losing health care and other benefits. 

Policy Concerns
Social policies in this country have, until recently, been based on isolating and caring for people with disabilities in facilities outside the mainstream of our society.  The policies reflected the general cultural attitude and perception that people with disabilities are different and need separate programs and services from nondisabled individuals.  This approach led to many separate legislative initiatives to provide support from one group or another of people generally referred to as disabled.  The result is the fragmentation of government-based funding streams for disability risk assessment, programs, research, training, and information dissemination.  To provide equal opportunity for full participation for people with disabilities in social and work activities, current legislation needs to be modified during reauthorization and new legislation needs to be developed to provide for programs that do not exist or are available for only a limited number of people who meet strict eligibility criteria.  In addition to government program changes, the taxation, immigration and device regulation rules and regulations enforced by the government could be changed to improve participation by people with disabilities.  Businesses should be made aware of existing incentives (tax credits and deductions) for product development, improved site access, and employment of people with disabilities.  Evidence of the cost-effectiveness of universal design could be used to demonstrate to the private for-profit sector that including accessibility in their business plan is good business.  To improve the economic viability of people with disabilities and to improve the incentives for their engaging in employment, itemized and non-itemized tax credit to adjusted gross income for disability-related expenses (such as assistive technology, personal care assistants, accessible transportation, and advance work-related education) could be instituted.

Summary of Policy Concerns
Each public program designed to improve the lives of people with disabilities is based on legislation that defines disability in terms of legislative intent, which not only differs for different laws but also differs over time as the laws are reauthorized.  Two basic strategies for improving disability-related legislation are 1) employ specific gradual change during reauthorization of each piece of legislation, and 2) specify large change through new legislation (e.g., ADA) that would create a single government agency (i.e., Administration on Disability) that would administer all or a large portion of the government programs directed towards all Americans with disabilities.  

Data Concerns
The target selected for attainment for the social participation objective (6.4) was to move participation by people with disabilities from 95% to 100% of the reported general population value (National Health Interview Survey [NHIS]; Centers for Disease Control and Prevention [CDC], National Center for Health Statistics [NCHS]).  The technical difficulties in defining who is disabled and what is included in the terms social and participation has led to the conclusion that as originally constructed, the HP 2010 measure of social participation did not adequately reflect social participation or quality of life. 

To address these and other concerns, a list of principles for measures to be used in tracking changes in participation were made: these include the need for validity, reliability, sensitivity, applicability, feasibility, and diversity.  In addition, these measures need to include self-report, to provide multiple formats for administration, and to be repeated at frequent, regular intervals.  In response to those concerns, new questions have been developed and were included in the 2001 NHIS supplement, providing a stronger mechanism for tracking progress on full participation.

Work
The goal set for employment was to move from 52% to 82% (Survey of Income and Program Participation [SIPP], US Department of Commerce, Bureau of the Census).  This goal appears to be straightforward and feasible to monitor.  However, when one considers the level of disability, rates of employment vary dramatically.  For those with non-severe disability, the rate was 77% while the rate for those with severe disabilities was 26%.  Further complicating the issue are differences in age, gender, race, ethnicity, educational level, and level of employment (part time, full).  It was highly recommended to include additional questions when surveying employment.

Summary of Data Concerns
The HP 2010 target of equity in social participation with people who do not have a disability was established using poor data.  New baseline data are being collected through the use of new items in the Behavioral Risk Factor Surveillance System (BRFSS) NHIS supplement.  While this effort is a good beginning, additional valid and reliable measures of participation need to go beyond simple frequency counts.  These measures need to include sensitivity to change, the capacity to separate the effects of a multitude of factors (inclusive of the wide diversity of activities generally considered to be social participation), and to capture such subjective reactions to including participation importance, choice, satisfaction, control, self-image, and self-actualization.  Further, eligibility criteria for social support programs that restrict the use of equipment to homes, set strict income limits, or require a certain medical severity level or marital status may limit the veracity and therefore the content validity of the questions used in national surveys.  Monitoring employment levels requires breaking down the constituent parts of the terms employment and disability to establish targets that reflect the components rather than the aggregate level of employment of people with disabilities. 

References
1. Department of Health and Human Services. Centers for Disease Control and Prevention, and the National Center on Birth Defects and Developmental Disabilities. Healthy People 2010. Disability and Secondary Conditions, Chapter 6. Vision for the Decade: Proceedings and Recommendations of a Symposium. Atlanta, Georgia, December 4-5, 2000. 

2. Keynes R. Darwin, His Daughter, and Human Evolution. New York: Riverhead Books; 2001.  


PARTICIPATION WORKGROUP RECOMMENDED ACTION STEPS

Participation  Policy and Program ACTIONS

1.  Support and extend already-existing activity between government and non-government organizations to a) identify activities in cities or neighborhoods that provide models of accessibility for and participation by people with disabilities, and b) work cooperatively to promote a participation agenda with major decision makers in communities, including Chambers of Commerce, faith-based groups, hospitality industry, transportation and other community services, universities, Centers for Independent Living (CILs), recreation and state park staffs, city planners, architects, etc.  Develop and maintain a Web site featuring information on such model communities.

2.  Develop a campaign to amend the US tax code to include tax credits (not deductions) for disability-related expenses (home modifications, van conversions, functional fitness machines, etc.) that increase community participation and integration.

Discussion 
Workgroup discussion focused on a variety of ways to increase community participation of people with disabilities.  We began by reading aloud the summary sections on programs and participation from David Grays paper for this forum.  We then addressed our discussion of the words participation and community.  Participation was defined as encompassing a variety of activities in the community; it is life.  It was recognized that community leaders and policy-makers need to be recruited to further the agenda, that people with disabilities should be involved in all levels of the community, and that the disability perspective should be infused into all activities.  The definition of community need not be geographic; it can be cultural.  There was also consensus that leadership training for people with disabilities might be needed to further the agenda, and that leisure and recreation should be placed high on that agenda.  Frequently, people with disabilities have had little time and resources for leisure, and we need to remember and learn how to have fun!

Employment was noted as an important issue regarding participation.  One member noted that social participation often leads to employmentits like joining the larger family of the community.  It was suggested that employing people with disabilitieswho understand benefits issues to counsel others would be important in modeling participation.  Another group member pointed out that addressing other critical issues such as access to assistive technology and housing are also important in order for people with disabilities to fully participate. 

Regarding health issues related to participation, the group mentioned a number of factors that will influence facilitating full participation.  These include promoting a health agenda for men with disabilities in addition to an agenda for women, creating a national buy-in program for Medicaid, and promoting the importance of maintaining basic fitness and stamina throughout life.  A target audience for advertising community-health initiatives should include people with disabilities, and the idea that wellness is a prerequisite for participation is important.  Additional health strategies include training medical residents through disability and health programs; addressing the Medicare home care rule to allow people to leave their homes and still retain benefits (perhaps by having health care providers write recreation prescriptions); and involving physicians, nurses, and other health care professionals in this effort (perhaps by asking them to adopt the Kaiser Permanente Family Foundation Model, which is holistic in nature).  

Some of the discussion focused on consideration of the economic clout of people with disabilities as a group.  This generated the idea of a Places Rated Index for disability, similar to many of the type of surveys such as Best places to live, work, retire, etc..  


Enforcement of the Americans with Disabilities Act (ADA) was considered very important, with one group member suggesting that it be included in municipal codes so that police could enforce accessibility items.  Additionally, there is a need to get legislative information to people with disabilities when legislation affects their lives, as was needed when raising awareness of the Olmstead decision.  One group member offered the idea of creating a fact sheet on how communities can implement the Olmstead decision in order to give them the tools necessary to increase participation, or how to help disseminate any already-existing materials. 

Group members also discussed the idea of devising a twelve-item community participation report card that could be available at a Web site so individuals could easily log on and rate various aspects of their community; these could be and  monitored, as communities submitted their grades.  Also, a research tool might be identified for accessible areas in communities using the Geographic Information System (GIS).  Another suggestion was to ask people to keep a Participation Diary for a week where they would include activities participated in, a satisfaction scale for each, and a list of activities that they did not participate in and the reasons why (barriers).  The group also discussed the need to educate faith-based communities regarding participation issues and to enlist their support. 

Partners
Government
Department of Education (DOE), National Institute of Disability and Rehabilitation Research (NIDRR)

Non-government 
Ad Council
American Institute of Architects (AIA) and national interior design groups 
American Medical Association (AMA) (c/o Margaret GianniniKaiser Family Foundation)
American Therapeutic Recreation Association (ATRA)
Association of Programs in Rural Independent Living (APRIL)
Chambers of Commerce
Media
Medical education curriculum committees 
National Council on Independent Living (NCIL)
National Recreation and Parks Association (NRPA)
Primary care physician groups  

Participation  Data ACTIONS

1.  Identify pertinent measures of community participation and the best methods of collecting indicators of community participation.  These might be characterized by using a nationally representative sample across the life span, and allowing comparisons of the participation of people with and without disabilities.

2.  Establish relationships with agencies and organizations responsible for collecting this information so that appropriate items to measure participation and/or identify people with disabilities are included.

Discussion
Objective 6.4 in the Vision for the Decade document concerns social participation.  The wide-ranging discussion covers several topics including major problems in addressing the objective, partners in implementing the objective, programs and policies that could help in addressing the objective, and recommendations for moving forward.  With regard to data, the primary problem identified is the lack of a clear definition of social participation.  Thus, the social participation workgroup defined content areas in which to focus data collection efforts, distributing tasks among committee members, and deciding future actions for addressing data issues.  

The group included in its deliberations Objectives 6.6 and Objective 6.8, believing that these objectives could be eliminated if overlap with another group appeared later in the discussion.  We approached the task of implementing the data plan for social participation with the following assumptions: 

1. Include only those actions that will further the Vision for the Decade document, not duplicate it.
2. Focus on indicators that reveal important characteristics of social participation.
3. Focus on indicators that allow for comparison to the general population (and important demographic subgroups).
4. Focus on outcomes, not enabling objectives.  For example, try to stay away from access issues, and instead, focus on indicators that reveal a pattern of participation (or discrimination).  There is a subtle (in some cases) but important difference.

The following indicators are most likely present in some form in current on-going population surveys.  Where possible, each indicator is identified along with a desired statistic.  

1. Participation in community recreation and leisure activities.
a. Percent who participate in a specified amount of recreation and leisure activities
b. Percent who are satisfied with access to desired recreation and leisure activities

2. Participation in the educational system 
a. Percent who receive a high school diploma (exclude certificates of completion)
b. Percent who participate in post-secondary education (including vocational programs that lead to certification and apprenticeships)
c. Wish list: Percent of missed school days due to health or disability

3. Participation in community 
Percent of people not socially isolated.  The concept of social support is what we may be trying to distinguish.  This topic needs further exploration to determine its viability as an indicator.

4. Economic self-sufficiency 
a. Percent who participate in the workforce (employment rate)
b. Average salary/pay
c. Missed workdays
d. Wish list: Missed workdays due to health or disability

5. Volunteer activity 
a. Percent who participate in volunteer activities
b. Percent who participate at a specified frequency in volunteer activities
c. Percent satisfied with their level of participation in volunteer activities

6. Family 
Percent satisfied with their parenting role (limitations in parenting).  This is a concept raised during the plenary sessions.  While the working group chooses to address it, it is not clear how it can be addressed. 
       
7. Use of transportation when needed 
Percent who indicate they have the access to transportation most or all of the time that it is needed.  
       
8. Use (benefit) of technology 
a. Percent who use the Internet
b. Percent with access to a computer (See Digital Divide)

9. Use of media 
a.	Percent with access to a VCR/DVD
b.	Percent with access to cable or Satellite services

10. Participation in the political process. 
      Further exploration of a potential indicator is needed 

11. Participation in religious pursuits (institutions).
      Further exploration of a potential indicator is needed

12. Participation in health care
Further exploration of a potential indicator is needed.  In addition, a determination of overlaps with other indicators being worked on by other workgroups is required.  Variations on these indicators are being used in the State and Local Area Integrated Telephone Survey (SLAITS) to identify children with special health care needs (cshcn) nationally.  We will be looking at other national surveys; however, currently we project collecting the: 
a. Number of hospitalizations or emergency room visits in the past year
b. Number who had health insurance during the past year, or had adequate insurance and/or who had no interruption in their insurance coverage in the past year
c. Number reporting adequate insurance or funds for prescription medication (or some variation of this) 

13. Health care expenditures. 
      Average out-of-pocket expenses for health care 

Partners  
Government
Department of Education, National Center for Education Statistics (NCES) and National Institute on Disability and Rehabilitation Research (NIDRR)

Non-government
American Association on Public Opinion Research (AAPOR)
National Association of Social Workers (NASW) 
National Organization on Disability (NOD)

Paper on Assistive Technology and Accessible Environments

Richard Duncan, MRP
The Center for Universal Design
North Carolina State University
Raleigh, North Carolina

Healthy People 2010, Focus Area 6 Objectives:

Objective 6.10: Increase the proportion of health and wellness treatment programs and facilities that provide full access for people with disabilities.

Objective 6.11: Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed (to participate in home, school, play, work, or community activities).

Objective 6.12: Reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities.

Acknowledgments
The author appreciates the assistance of Jane Gay, Leslie Young, Carol Potter, and Rachel Tanenhaus.

The foundation for improvement of the health and well-being of people with disabilities is grounded in environmental changesphysical, attitudinal, and systemic.  There is a long history in the field of disability that justifies and explains this focus on the environment, driven by the disability rights movement advocating a new perspective on disability.  That new paradigm rejects the traditional medical model of disability, which views the underlying problem of disability as being caused by injury, disease, or birth defects and resulting in physiological and psychological impairments and limitations in a persons ability to perform normal human functions, thus requiring medical interventions to reduce impairment and improve function.  In its place, the new paradigm advocates a social model of disability where people are expected to have large variations in physical, mental, and functional capabilities, and disability is viewed as a failure of society to accommodate these normal human differences.  The goal is not to fix the person, but rather to modify the environment, removing physical, attitudinal, and policy barriers and facilitating the achievement of independent living and full participation in society.  Over a decade ago, the Americans with Disabilities Act (ADA) proclaimed the inherent right of people with disabilities to fully participate in all aspects of society and set about the task of removing barriers to full participation in several key areas of life.  More recently, the International Classification of Function, Disability, and Health (ICF) culminated an international effort to fully recognize the impact of environmental factors on all aspects of disability with particular emphasis on the significant role that barriers and facilitators in the physical, social, and attitudinal environment play in determining the extent of societal participation enjoyed by people with disability.  Clearly there is strong support for implementing environmental interventions to improve the lives of people with disabilities.

The three Healthy People 2010 objectives focusing specifically on the environment include both individual and community elements.  Currently, the environment is most often seen as a barrier to the societal participation of individuals with disabilities.  The intent of these objectives is to develop strategies so that the environment is a facilitator of participation.  That will include ensuring that the person has appropriate assistive technology to function optimally at home, work or school, and in the community.  In addition, emphasis will be placed on designing the physical environment and policies so that programs and settings are accessible to everyone.  Facilities, programs, and settings that encourage health and well-being are particularly relevant for these purposes, and have been given a specific objective.  Finally, confronting the negative attitudes of society toward people with disabilities will be required to improve participation.  These objectives grapple with the challenges and possibilities of removing barriers and increasing the accessibility of programs and the environment.  When addressed, these objectives can have a profound effect on the lives of people with disabilities and all Americans.  

The remainder of this paper suggests action steps that will result in progress toward achieving the goals of objectives 6.10, 6.11, and 6.12 on a local, state, or national level during the next 2 to 3 years.  These are only a few of the possible directions that can be taken and that you will address more fully in your workgroups.  

Overarching Action Steps
Many of the suggested action steps arise because accessibility is handled by varied legislation, regulation, and funding.  For example, many policies of businesses as it regards access to the nonresidential built environment is guided by the ADA (1990), the ADA Accessibility Guidelines (ADAAG), and various model, state, and local codes.  Collectively, they mandate significant accessibility requirements in almost all nonresidential new construction.  Few states, however, have incorporated the ADA standards into state building codes to allow proactive review by local inspectors.  New multifamily housing is covered by the guidelines of the Fair Housing Amendments Act (FHA, 1988) and, likewise, states have been slow to incorporate them into their state codes, making compliance problematic.  

A new strategy for societal inclusion is universal design.  Universal design is primarily a market-based approach to the design of products and the built environment that allows use by those of all ages and abilities without requiring specialized adaptations.  Universal outcomes have been growing all along as designers and owners of buildings incorporate accessible design, and codes and standards, in more sophisticated ways.  Universal design changes the way we think about design so that it is inherently more inclusive.  Advances in the design of the physical environment, however, have outstripped changes in negative attitudes toward people with disabilities.  Universal design concepts must also be extended so that access to programs is as easy as access to buildings.  This is where the elements of the environment beyond that which is built, or even communication factors, need so much of our attention.  

Another overarching notion focuses on state plans.  State Healthy People 2010 task forces or coalitions should include subgroups focusing on environmental access and assistive technology.  These coalitions can implement strategies using leverage from partners, including Protection and Advocacy programs, Disability and Business Technical Assistance Centers (DBTACs), Fair Housing law centers, Assistive Technology Act Projects (ATAPs), the aging network, Centers for Independent Living (CILs), and others.  The diverse stakeholder groups that comprise the environmental action subgroup need to include private sector stakeholders such as developers and builders, and representatives from health care, nonprofit organizations, and government.  Many of these groups do not generally communicate, so care must be taken to forge new alliances based on a common purpose.

Coalitions may take advantage of two emerging realities: the Olmstead Supreme Court decision and the New Freedom Initiative, the Presidential Executive Order to encourage states to increase community integration of people with disabilities.  These two actions will allow increased attention to both the need for community accessibility and the funds to underwrite some of the needed environmental changes.

Programs
1.  People with the means to purchase assistive technology often do not know what is available or how to get it.  Households of lesser financial means have a double burden because they also are not aware of funding or loan programs that can help them.

Action Step: Promote assistive technology and home modifications by publishing and disseminating annually updated guides to funding.  This will have the effect of promoting awareness of options while linking people with possible funding sources.

2.  A number of high-quality publications (e.g., Removing Barriers to Health Clubs and Fitness Facilities) have been produced that have enjoyed only limited distribution.  Others are in production.  These address topics such as accessible physical activity, recreation, and fitness as well as publications on universal housing (e.g., Universal Housing Features); home modifications; retail facilities (e.g., Design Guidelines for Supermarkets); hotels and motels; and others.  These often languish in the publication lists of organizations that lack the means to pursue national, in-depth distribution.

Action Step: Provide funding for additional printing and targeted free distribution or to fund marketing to pursue paid distribution.  Access through the Internet is now an essential part of most publishing.  However, lengthy or technical publications may not be well-suited to large-file downloading and printing.  All or at least part of existing and future publication development must provide for Web and print access.

3.  Introducing universal design, improving inclusive business policies, and educating building officials and others in design and construction will require constant annual attention to training and information dissemination in order to be successful.  Too many initiatives end before they gain traction.

Action Steps: Develop and assist with training programs for code officials specifically around the certification of new, inclusive codes.  Additionally, launch continuing education and promotion programs to increase awareness of universal design and barrier-removal needs and options for health care and fitness facilities, commercial construction, and housing.  Encourage programs that target change in social attitudes for adults as well as children and information about appropriate programs and policies to serve and increase the hiring of people with disabilities. Include state Technology Act Projects in all training and dissemination relating to assistive technology.  The materials dissemination listed above must accompany this.  All means should be explored including face-to-face conferencing; single-purpose trainings and seminars; audio-conferencing, teleconferencing, and Web conferencing. 

4.  Creative solutions to barrier removal and universal design can be aided by access to technical assistance.  We can look forward to new Fair Housing initiatives in 2003 that address this issue.  The Department of Housing and Urban Development (HUD) has funded a contract to create the Fair Housing Act Accessibility Training and Technical Guidance Program for architects, builders, developers, inspectors, advocates, and others in the multifamily housing industry.

Action Step: Stay in touch with HUD bulletins and the Fair Housing office and make sure these audiences in your states attend trainings, receive materials and take advantage of the technical assistance.  Note: Experience teaches us that most developers and builders of multifamily housing rarely seek technical assistance around fair housing. 

Policies
1.  Many health insurance policies restrict employees ability to access assistive technology.  This slows and limits employees full functioning and return to work.

Action Steps: Challenge businesses and other employers to include coverage for assistive technology and other health-promoting technology.  Employers can offer medical insurance policies that include ample coverage for assistive technology.  Encourage Medicaid and Medicare rules to adopt the same strategy.

2.  Too few examples of universal homes exist as models for public-sector or private-sector builders. In contrast, funding for home modifications is typically deficient which creates long waiting lists in local service providers.

Action Steps: Encourage state Housing Finance Agencies to follow the lead of others (North Carolina, Kentucky, Alaska, etc.) by adopting special financing incentives for universally designed rental and single-family homes and adding home modifications to remodeling programs.  This should be coupled with demonstration and promotion projects with home builders associations.

3.  The retroactive nature of project review for compliance with ADA (ADAAG) and Fair Housing (Fair Housing Design Guidelines) can be problematic because projects are often 

discovered to be in violation only after construction and occupancy.  Remediation becomes slow, tedious and usually less effective than when creating proper design from the start. 

Action Step: State adoption of the accessibility provisions empowers code officials to review and approve projects before construction thereby providing built-in technical assistance (of a certain kind) for projects.  Groups should work for adoption of ADA and Fair Housing design standards (or model code equivalents) by state and local building codes and certification by the Department of Justice.

4.  The federal tax code funds barrier removal in businesses by allowing tax credits or deductions for qualified expenditures.  However, the tax code restricts which type of business is eligible.  Not all businesses can take advantage of the statute and some types of assistive technology are not fundable. 

Action Step: Follow Iowas lead by adding a state tax deduction/credit to fill gaps in the federal tax program to encourage barrier removal and assistive technology use.  The promotion process for this initiative itself will draw attention to accessible and universal design for existing facilities, thereby encouraging additional efforts beyond what the funding can achieve.

Data
1.  State health departments can play an active role in gathering data and requiring more accessible facilities.

Action Steps: Existing county or assessment instruments such as the North Carolina Community Health Assessment need to include full-accessibility assessments of facilities.  This can be tied to those seeking discretionary or grant funds that will encourage accessibility improvements and the use of appropriate assistive technology while at the same time gathering data (possibly using the instruments listed above) about the state of facility accessibility and where and what type of training or other interventions are needed.  Surveyed facilities can include physician and dental offices, health clinics, YMCA centers, or fitness centers.

2.  Little is known about the actual state of accessibility of the nations buildings and, more broadly, about the impact and success of the ADA and Fair Housing in promoting increased accessibility.  Our experience tells us that overall quality is improving but with uneven results.  A recent HUD-funded project surveyed compliance with the Fair Housing Guidelines.  As yet no release date has been set for the results of the study.  An equivalent survey of ADA compliance is not currently underway. 

Action Step: The results of studies such as these might point the way toward education or corrective measures that can be acted on by targeting common occurring deficiencies.

3.  Multiple versions of code-based facility assessment tools have been created and are in use around the country.  These are intended to assist with compliance with ADAAG, the Fair Housing Guidelines, and other codes, and can provide information about basic architectural accessibility features.  They are typically used on a building-by-building basis.  A Universal Design assessment is currently being refined, expanded, and tested by The Center for Universal Design.  A dynamic anthropometric database of users of wheelchairs, under development by the University of Buffalo, will add important information to aid designers in crafting more useful and safe environments.  These new tools will be refined and tested over the next two years in time for release.

Action Step: Local stakeholders should begin or continue to use existing assessment tools and access the new universal design assessment instrument to obtain data on facility accessibility and usability.  Gathering data from groups of similar facilities may help in documenting patterns of problems that may yield to collective remedies.

4.  Making the case for accessibility improvements in local communities often stumbles when data on incidence of disability or aging are requested.  Even data that are easily accessible on the Web are often raw or aggregated in ways that are unsuitable.

Action Step: Provide easy-to-access and easy-to-use state and local demographic data to aid in creating compelling case statements for removing environmental barriers.


ENVIRONMENT WORKGROUP RECOMMENDATIONS

Environment Policy and Program ACTIONS

1.  Develop a program to educate all government-funded health programs about accessibility regulations, focusing on improving adherence.

2.  Develop the principles of environmental and program accessibility, as well as technology and universal design, into curricular modules that can be used with professionals and trainees.

3.  Work to adapt modules from action step #2 (above) into materials to educate communities as well as people with disabilities about the relationship between environmental factors and participation.

Discussion
The workgroup concluded that these program and policy actions, if implemented, would result in greater access to health care systems, assistive technology, and community activities.  Implementing these recommendations could not achieve these HP 2010 objectives without strengthened efforts by federal co-lead agencies and local, state, and federal government agencies to do a better job on activities already initiated or funded.  For example, during the discussion about access to health care facilities, it became clear that many substantive, credible, and user-friendly "how to make health care facilities accessible" guides already exist.  Many of them are available online and many were produced with funding from the CDC and federal government.  Expert materials on universal design are readily available to the public yet often unknown to engineers, homebuilders, and medical product manufacturers.  There are also a variety of existing materials on making small businesses accessible, and available tax credits that need to be more widely disseminated.  Disseminating currently available information to multiple audiences responsible for achieving the HP 2010 objectives is critical.  Avoiding the duplication of currently available quality documents could save valuable resources.  

When discussing potential policy solutions, the group agreed that stepped-up enforcement of existing laws by federal agencies such as the Department of Justice (DOJ), Department of Housing and Urban Development (HUD) and Equal Employment Opportunity Commission (EEOC) is also necessary to achieve the HP 2010 objectives.  Many physical and architectural barriers to health care and recreation facilities, businesses, and residential housing could be eliminated with strengthened enforcement.  In fact, without increased enforcement of the Americans with Disabilities Act (ADA), Fair Housing Act, and Section 504, 508 of the Rehabilitation Act, it is likely that new activities will also fail to achieve targeted objectives.

Finally, partnering with public and private organizations that have similar or compatible missions will amplify the work under way at CDC.  CDC should convene federal agencies that work on health care, community, and technology access issues to share information about successful federal programs and materials and to leverage resources.  The President's New Freedom Initiative (NFI) provides an ideal opportunity for forming interagency groups charged with implementing NFI goals.  Likewise, ensuring that the public has access to information is in line with the President's E-gov Initiative.  The E-gov Initiative seeks to simplify government and make the federal government more responsive to individual consumer needs.

We recommend that any entity receiving CDC funds should demonstrate its compliance with 508, 504 of the Rehabilitation Act and ADA accessibility regulations as a key part of the grant review or subcontracting process.  This would include any national, state or local entity which directly or indirectly through grants or contracts receives funds from any part of CDC.  Entities that do not meet the minimal accessibility standards of 508, 504 and the ADA would not be funded.  Expansion of this policy into the grant review and contract process of NIDRR and other governmental agencies and organizations would promote the full inclusion of people with disabilities in their community, education and work settings. This would require technical assistance and guidance from existing federally funded centers relating to physical, program and IT access.

The principles of environmental and program accessibility, and universal design should be included in the pre-service and continuing education of a wide variety of health, education, and community professionals.  Accessibility and universal design principles curricula should be part of the accreditation requirements of professional post-secondary training programs.  This would include post-secondary programs relating to education, rehabilitation, health, business, and housing/building trades.  Model curricula that are directed at the professional knowledge, skills, and abilities, needed for implementing of best practices, and are proactive and oriented toward current and emerging technology issues should be developed and disseminated. 

We also suggest leveraging existing funding, programs, and materials to provide information and training about assistive technology, environmental adaptations, and Universal Design to a wide variety of community audiences.  Community businesses, entities, and organizations, and health care services and professionals need to be educated and given technical assistance about the benefits and strategies for providing accommodations to people with disabilities in their communities.  This would include information about tax incentives and available assistance programs or materials.  We recommend that strategies be developed and implemented to engage manufacturers and product designers of health, wellness, and fitness equipment and products to increase the availability of universally designed products.  Information and training about assistive technology should be provided to multiple audiences: consumers of all ages, families, educators, health care professionals, employers, personal assistants, etc.  

We recommend leveraging existing funding, programs, and materials for a media campaign to improve the publics awareness and expectations of full community inclusion and participation by people with disabilities.  Identify existing materials and support shared use, including easing of copyright applications, across health organizations and state entities.  We recommend working with the national media and advertising associations so that people with disabilities are routinely included in marketing materials (print, TV, and Web).

In addition, we suggest engaging the building community to increase the number of single-family housing units that are universally designed.  Leverage existing funding, programs, and materials to increase the public and housing trades awareness and expectations that housing be universally designed and easily adaptable.  This will include a variety of action steps specific to the needs and political/social environment of each state and community: build model homes; demonstrate awareness activities through media and community events; train staff and communities; change city, county or state codes; add personal tax incentives for home modifications and adaptations; and incentives for low-interest loans. 

Partners
Government
Department of Health and Human Services (DHHS) 
Department of Education (DOE), National Institute of Disability and Rehabilitation Research (NIDRR) 
Department of Justice (DOJ)
State departments of education
State departments of health

Non-government
American Association of Advertising Agencies (AAAA)
American Association of Retired People (AARP)
American Marketing Association (AMA)
American Medical Association (AMA)
Centers for Independent Living (CILs)
Chambers of commerce
Community maternal health centers
Council on Higher Education Accreditation (CHEA)
Disability and Business Technical Assistance Centers (DBTACs)
Disability Research Institute
Faith-based organizations
Foundations such as Robert Wood Johnson Foundation (RWJF) 
Habitat for Humanity
Hotel and restaurant trade associations
Institutions of post-secondary education
Medical and dental professional organizations
National Ad Council
National and state associations of architects and home builders/remodelers
National Association of Area Agencies on Aging (n4a)
National Association of Broadcasters (NBA)
National heath organizations
National professional and trade organizations
New Freedom Initiative (NFI)
Small Business Administration (SBA) and state small business associations
Specialty organizations, such as the American Cancer Society (ACS)
State and community housing code officials
State Assistive Technology Act Projects (ATAPs)
State Cooperative Extension Services 

Environment  Data ACTIONS

1.  Use data analyzed from the 2002 National Health Interview Survey (NHIS) and state surveys that have environmental questions to identify specific areas for intervention in communities, such as transportation and work policies, and disseminate this information through federal and community networks.

2.  Identify environmental checklists already developed or currently being developed that can be used to assess disability-friendly characteristics, and identify networks for distributing and using the evaluation tools.  Specifically, continue collaboration and expansion of the tool developed by the National Center on Physical Activity and Disability (NCPAD) to evaluate and improve access of people with disabilities to fitness and recreation settings.

Discussion
Individual-level data are being collected on Objective 6.10 in the 2002 National Health Interview Survey (NHIS) (see Vision for the Decade).  As that document notes, there are no consistent sources of data on facilities themselves, and a broad range of facilities (healthcare, fitness, social service) are covered.  The group addressed a subset of facilities, mindful that many potential collaborators were named in Vision for the Decade.  For example, the Offices of Disability and Health in all Centers for Disease Control and Prevention (CDC) State Implementation collaborative agreement states are expected to monitor the accessibility of all facilities in which health department services are offered.

Regarding Objective 6.11, we note the italicized language modification suggested in Vision for the Decade, emphasizing that the desired outcome of assistive technology (AT) is increased participation.  Our group reaffirmed that the greatest barrier to collection of valid data in pursuit of this objective is the lack of good standard questions that can be used to ask people about their use of AT.  We need questions that address the knowledge gap about what AT is; the lack of knowledge about what is available and how it can help; and the problems of use, including abandonment of AT. 

Many respondents do not know what is meant by assistive devices and therefore under-report their use.  Much useful assistive equipment is not special and therefore may not be mentioned.  An exhaustive list of possible devices improves reporting but exhausts the respondent and complicates follow-up questions.  Those who do not know what is available are unable to identify the AT that might help them.  Lastly, having AT is, sadly, not always the same thing as using it successfully.  The 2002 NHIS question on AT includes a small subset of things but cannot address broader issues of need and its impact on participation.  This is a start toward current national data on AT use, but will not provide state and local-level data.  Our long-term objective is to repeat the NHIS 1991 AT supplement with better questions.

Objective 6.12 is worded in terms of reports of barriers, but the intent is to improve the environment itself.  The 2002 NHIS measures progress toward the literal objective with revised items from the Craig Hospital Inventory of Environmental Factors (CHIEF) that ask individuals about their perceptions of barriers and their impact.  This approach raises several questions.  Disability is, among other things, a social movement and many people with disabilities still see their impairments, not the environment, as their main limiting factor.  This results in under-reporting of barriers.  Furthering awareness of the social model of disability may result in increased reports of barriers, as occurs when people with disabilities begin to participate and then become aware of the degree to which barriers impede them.  The greatest question is how to relate these perceptions of barriers to aspects of the objective environment that can be changed and improved.  Research projects are currently investigating how environmental barriers can be measured objectively.  Approaches such as cognitive mapping are being used to identify specific enabling aspects of the external environment, and are contributing to the creation of measures that identify facility and community accessibility.  Even describing the difficulties highlights the challenges.  

Partners
Government
Department of Education (DOE), National Institute of Disability and Rehabilitation Research (NIDRR)
Department of Health and Human Services (DHHS) 
National Center on Physical Activity and Disability (NCPAD)
State public health departments 

Non-government
Assistive Technology Act Projects (ATAPs) 
American Federation for the Blind
Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) and its European equivalent

Paper on Leading Health Indicators:  Physical Activity, Overweight and Obesity, Tobacco Use, and Access to Care

Donald L. Patrick, PhD, MSPH
The Center for Disability and Policy Research
University of Washington
Seattle, Washington 

Healthy People 2010, Focus Area 6 Objectives: 

Objective 1.1:  Increase the proportion of people with health insurance.

Objective 1.4:  Increase the proportion of people who have a specific source of ongoing care.

Objective 19.2:  Reduce the proportion of adults who are obese.

Objective 19.3c:  Reduce the proportion of children or adolescents who are overweight or obese.

Objective 22.2: Increase the proportion of adults who engage regularly, preferably daily, in moderate physical activity for at least 30 minutes per day.
 
Objective 22.7: Increase the proportion of adolescents who engage in vigorous physical activity that promotes cardio-respiratory fitness 3 or more days per week for 20 minutes per occasion.
 
Objective 27.1a:  Reduce cigarette smoking by adults.

Objective 27.2b:  Reduce cigarette smoking by adolescents.


I would like to thank Tess Bruney for help in completing this manuscript; and Susan Kinne, Mary Richardson, Marsha Patrick, Todd Edwards, Tari Topolski, Jelica Nuncio, Alice Porter, and Tanis Doe from CDPR for their suggestions.

Abstract

Health promotion and disease prevention activities (HPDP) targeting people with disabilities are crucial to increase years of healthy life for the whole population and reduce health disparities.  Leading Health Indicators identify important health concerns and motivate programs, policies, and the availability of data to measure progress.  We present crosscutting issues and suggest activities for a national agenda to improve the health of people with disabilities, emphasizing selected indicators: physical activity, overweight and obesity, tobacco use, and access to care.  People who have disabilities are more likely than people without disabilities to report lower levels of physical activity, to exceed the recommended body mass index for weight and height, to smoke currently, and to face financial barriers to health care. 

People with disabilities rarely receive the range of HPDP activities they may need or want, although they are susceptible to other chronic conditions to the same or greater degree than the general population and are at risk for secondary conditions.  Because so much public health emphasis is placed on primary prevention of disability, less emphasis is given to preventive health care services for people with existing disabilities.  Because of the socioeconomic disadvantages and stigma experienced by people with disabilities, HPDP strategies must work toward meeting the basic needs of employment, housing, income, reduction of discrimination, and enhancement of community participation.  Time and effort costs must also be addressed.  Only then will programs be successful in encouraging individual resources and skills.  All programs need to pay attention to individual goals, expectations, and concerns. 

At least three major activities are necessary to provide effective HPDP activities for people with disabilities: design and dissemination of culturally appropriate and accessible programs and policies, improved coordination of social and health care to meet individual health promotion needs, and an improved evidence base on the effectiveness of personal and community prevention that is inclusive of people with disabilities.  

Programs and protocols that are designed by and with people with disabilities will be most effective.  Policy changes are necessary to increase participation of people with disabilities in the social and individual determinants of health and to improve the cultural competency of programs and personal services.  Finally, widely disseminating programs and policies depends on studies involving people with disabilities in the growing evidence base on HPDP.  Using controlled and observational studies, the current needs are to test existing prevention guidelines, develop and test protocols for preventing secondary conditions, and evaluate health promotion programs.  The health-related quality of life and health risk of people with disabilities should be monitored at national, state, and local levels to evaluate progress and make mid-course changes.

Full Paper on Leading Health Indicators: Physical Activity, Overweight and Obesity, Tobacco Use, and Access to Care

Health promotion and disease prevention interventions that focus on people with disabilities have received even less attention than such strategies for the public at large.1  Many people with disabilities report that traditional health promotion is a lower priority for them than just getting through the day at home and at work.  Accessing adequate housing, education, employment, income, personal assistance, and medical care trump going to smoking cessation programs or the gym, following weight loss regimens, or engaging in other health promoting activities.  Other evidence suggests that the same barriers to health promotion reported by people without disabilities, i.e., motivation to begin and adherence to on-going activity, also are the principal barriers for people with disabilities.2

At present, people with disabilities rarely receive the range of health promotion and preventive services they may need or want.3  Preventive services may be overlooked in clinical settings because of the focus on treatment of the disabling condition.  Standard public health preventive services may not reach this population.  Furthermore, the main focus of public health is on primary prevention of disability and less emphasis may be given to preventive efforts for people with existing disabilities.  People with disabilities, however, are susceptible to other chronic conditions to the same or greater degree than the general population and are at risk for secondary conditions.4 

Health promotion and disease prevention activities targeting people with disabilities are crucial to fulfill the two goals of Healthy People 2010increasing years of healthy life and reducing health disparities.1  The ten leading health indicators (LHIs), used to measure the health of the nation, reflect the major health concerns in the United States.  These leading health indicators were selected on the basis of their ability to stimulate change, the availability of data to measure progress, and their importance as public health issues.  This paper suggests activities for a national agenda to improve the health of people with disabilities emphasizing four selected indicators: physical activity, overweight and obesity, tobacco use, and access to care.

Risk Profiles
The Centers for Disease Control and Prevention (CDC) have analyzed data for people with disabilities in eight states and the District of Columbia, in which disability identification questions were asked and benchmark objectives for the leading health indicators were captured.5  Respondents in the Behavioral Risk Factor Surveillance System were asked the following disability identification questions: Are you limited in any way in any activities because of any impairment or health problem? and If you use special equipment or help from others to get around, what type do you use?  Although results are not descriptive of the US population and are limited to the nine states, the data identify the LHIs for which significant differences were noted for people with disabilities and people without disabilities. 

For a number of LHIs, people with disabilities are at indeterminate risk or report no disparity.  In a few instances, such as the use of smokeless tobacco, people with disabilities use these substances less often than people without disability.  People with disabilities, however, were more likely to report current smoking.  People with disabilities who report less exercise to reduce the risk of cardiovascular disease are more likely to report weight that exceeds the recommended body mass index for sex, and to be at a weight that exceeds ideal weight.  A higher percentage of people with disabilities also report that cost was a factor preventing them from seeing a doctor in the past year.

Obesity is among the issues currently at the top of the health agenda of the nation.  A report from CDC indicates that people with disabilities regardless of sex, race/ethnicity, or age, experience higher rates of obesity than people without disabilities.6,7  These data suggest that obesity often accompanies disability and illustrates the need to develop public policies and programs to prevent or reduce the risk that overweight and obesity represents for people with disabilities.  

Conceptualizing Health Promotion for People with Disabilities
To guide the design and evaluation of interventions that meet the full range of health promotion and disease-prevention activities appropriate for people with disabilities, the Center for Disability Policy and Research (CDPR) proposed a model of health promotion for people with disabilities.3  This model builds upon previous conceptions of disability, but it extends and reformulates these conceptions to place emphasis on the points of health-promoting interventions and the evaluation of outcome through measurement of health-related quality of life.  An updated version of the model is shown in Figure 1.

Components of the model, described as planes of experience, integrate the individuals total environment, the disabling process, opportunity, and quality of life.  Cost and outcomes research is recommended for the evaluation of prevention effectiveness.8  This model informs a US disability policy that emphasizes environmental modification, prevention of secondary conditions and functional decline, promotion of independence and autonomy, and improvement in individual quality of life.

Preventive interventions and policies must be tailored to the specific needs of different groups of people with disabilities in order to be acceptable and effective.  At the same time, these interventions must be incorporated into clinical practice and population-based community health promotion efforts.  People with disabilities and their advocates do and should play the central role in designing and implementing health promotion programs aimed at preventing the disabling process and promoting opportunity.9  Potential beneficiaries of prevention programs or policies must contribute to the knowledge, experience, and values important to identifying strategies that result in improved quality of life.  This participation is important both in prevention design and in community-based participatory research.10
At least three major activities are necessary to provide effective health promotion activities for people with disabilities: design and dissemination of culturally appropriate and accessible programs and policies, improved coordination of social and health care to meet individual health promotion needs, and an improved evidence base on the effectiveness of personal and community prevention that is inclusive of people with disabilities.  

Design of Culturally Appropriate and Accessible Health Promotion Programs: Toward Disability Competency
Resources for action are provided in HP2010 for the leading health indicators.  For example, the Presidents Council on Physical Fitness and Sports11 is a listed resource for action in Physical Activity, and the Weight Control Information Network of the National Institutes of Health12 is a resource for Overweight and Obesity.  In addition, the Public Health Service-sponsored US Preventive Services Task Force and the non-federal Task Force on Community Preventive Services provide evidence-based guidance on recommended preventive actions.13, 14  Evidence would suggest that the resources, guidelines, and programs developed for people without disabilities can and should be applied to programs targeted to people with disabilities, using a culturally competent model of program design and implementation.1

Consistent with the methods of the two task forces on prevention, we developed and applied the steps and format for the design of preventive intervention protocols for people with disabilities.15  Health promotion programs to address the four leading health indicators are amenable to the design of such protocols.  Testing of these protocols, sponsored through existing and new research mechanisms, would be an important step in developing health promotion programs for people with disabilities.  The types of protocols and examples are shown in Table 1.  Although the exact formats of protocols have been determined for the two existing task forces, the information needed in protocols for people with disabilities is shown in Table 2.

In some instances, protocols exist currently that have been evaluated, and dissemination is the issue: for example, aquatic exercise for people with arthritis or self-care protocols for diabetes and arthritis.16, 17  Some well-known physical activity interventions require evaluation, such as the Special Olympics, not only for the benefit to individuals in terms of physical activity but also for social and opportunity benefits.  Mass media interventions promoting activity for people with disabilities, smoking cessation telephone hotlines especially for people with disabilities, or school-based weight loss programs for overweight youth with disabilities are examples of protocols that might be developed and evaluated.

In developing health promotion programs and protocols, participation by people with disabilities is critical to assuring that programs are disability culturally competent.  Cultural competence is a set of congruent behaviors, attitudes, and policies that come together in a system or agency or among professionals and that enable effective interactions in a cross-cultural framework.  Culturally competent health promotion programs for people with disabilities recognize and respect the differences of people in terms of the values, expectations, and experiences with regard to health care and prevention.  

Disability communities and people with disabilities are simultaneously universal and unique.  One can view people with disabilities as a cross-cultural population that resides within the larger culture.18  Yet all people have some understanding of disability as a restriction in activities related to health and function that is not compensated for by the environment, either for themselves or for loved ones and friends.  Health promotion programs have been recognized to produce stigma for people with disabilities.19  There may be unintended, even harmful consequences of prevention strategies for people with stigmatized conditions, such as blaming the victim.  Disability competency entails a wide variety of values, attitudes, and behaviors that recognize both the individual and universal aspects of each individual in a health care system or health-promoting environment.  Health professionals can learn these skills in interaction with people with disabilities or through special cultural competency training in disabilities.

Disability competency implies that all resources for health and health promotion programs should be viewed according to the needs and wants of people with disabilities.  The guidelines should specifically address disability and how to tailor activities and disseminate programs to people with disabilities.  The National Center on Physical Activity and Disability is a stellar example of such tailoring within a specialized agency.20  The kind of tailoring employed by this organization should be possible in overweight and obesity and tobacco use programs.  Creation of centers that focus on obesity and on tobacco use by people with disabilities is one important option for consideration.

Policy Development 
For people with disabilities, appropriate preventive strategies promote more effective use of personal preventive services in primary care as well as greater responsibility for ones own health.  This emphasis shifts utilization away from more expensive specialty services.  Currently, people with disabilities may be disadvantaged not only by their impairment and disability, but also by how health care is delivered.  Much of their care is provided by a wide variety of different practitioners, sometimes specialists who are knowledgeable about the specifics of disabling conditions but often do not take on the responsibility of overall health management and prevention.  Conversely, primary care providers, who are trained in managing overall health frequently lack the expertise to manage the complexities presented by disabling conditions.  Few primary care providers have sufficient patients with any one disabling impairment to become expert within these impairment groups.

Improved coordination of social and health care is needed to meet individual health promotion needs.  For people who are able to manage their own health and health care, there is a growing industry of self-management programs available for different conditions and target populations.  Many people with disabilities, however, may not feel they have the expertise to manage health care decisions even if their personal health choices are within their own control.  Thus the question of assisting people with disabilities in making choices about health care and health promotion remains a challenging issue that requires innovative managed care solutions.

Public health interventions, directed mainly at primary prevention, may not reach people with disabilities.  Community-based strategies that address the problems of people with disabilities require a public health partnership not yet well-formulated.  The same principles of cultural competency relevant to programs apply to all prevention and health promotion policy for people with disabilities.  Prevention policy should focus on promoting equal access to primary care and preventive services.

Better communication strategies are needed to relate the knowledge about health and recommendations for health improvement to people with disabilities.  The use of the Internet and World Wide Web has increased, and many people with disabilities use these resources.  Tailoring the messages and providing special attention to people with disabilities are required to make these even more accessible and Bobby-approved. 21

Better communication to the public and with decision makers about health promotion needs is also needed.  This communication requires leadership by people with disabilities and their advocates.  People with disabilities live in complex environments and will be the best advocates for public health policies that address the intersection between environment, personal values, and behaviors that influence health outcomes.

Incentives are needed to promote change in health promotion policies for people with disabilities.  Economic incentives and disincentives need to be examined as possible arenas for promoting health. For example, support for accessible hiking and wheelchair trails in state and national parks could help promote increased physical activity.  Economic incentives have long been successful in the fight against tobacco.  The opposite of taxation and constricting smoking policies would be reimbursement for physical activity interventions and smoking cessation programs that are physically and culturally accessible to people with disabilities.22

Access to health care for people with disabilities is a particular public policy challenge. Although people with disabilities use health care services more frequently than other populations, formidable barriers continue to be commonplace.  The risk profile shows financial and health plan coverage barriers are most significant.23  However, the physical, social, communication, and cultural barriers are important and the evidence base less developed.18, 24, 25

Gathering the Evidence
Data on the health risks and health behaviors of people with disabilities should continue to be collected routinely through the surveys mounted by the Centers for Disease Prevention and Control.  The Behavioral Risk Factor Survey for adults is now able to identify people with disabilities and provide a risk profile.5  The Youth Behavioral Risk Factor survey needs to develop this capacity and to report annually health risk and perceived health of youth with disabilities.26

Special attempts are needed to translate these risk data for guiding policy and programs.  Assessment of the health and disability environment is needed with special attention to community access to health promoting activities for people with disabilities.  These individual and environmental assessments must involve comparisons to populations without disabilities and the measurement of disparities.  

Comprehensive preventive intervention protocols designed for people with disabilities are in the early stages of development.15  Demonstration of such interventions in clinical and community settings is needed to identify barriers to implementation, and evaluation is necessary to test the efficacy of these interventions in halting or reversing the disabling process.  The current prevention taskforces could provide a clearinghouse for this evidence base.13, 14

Using controlled and observational studies, the current needs are to test existing prevention guidelines, develop and test protocols for preventing secondary conditions, and evaluate health promotion programs.  Funding will be needed by the National Institutes of Health, Centers for Disease Control and Prevention, foundations, and other sources of public and private funding.  In some cases, current protocols can be modified for people with disabilities.  In other cases, experience shows that special protocols are required, such as those for bowel management or pressure ulcer prevention in people with spinal cord injury developed by the Consortium for Spinal Cord Medicine of the Paralyzed Veterans of America.27, 28

Finally, wide dissemination of preventive protocols is necessary.  Consistent with the recommendation for increased communications, these should be available via the World Wide Web, included in practice handbooks for primary care practitioners, and widely referenced.  Such wide dissemination of programs and policies depends on including people with disabilities and their advocates in studies that are building the evidence base on HPDP.

Figure 1. A model of health promotion for people with disabilities
 Patrick D. Rethinking prevention for people with disabilities, Part I: A conceptual model for promoting health. American Journal of Health Promotion. 1997; 11(4):257-260.

Table 1.?Types of Preventive Strategies by Locus of Intervention and Participants

Possible Participants in Intervention


Preventive Strategy



Locus of Intervention


People with Disabilities



Families


Advocacy
Groups

CDC, State & Local Health Departments
Prevention of the disabling process
Clinical (e.g., prevention of contractures)
Physical therapy
Physical therapy
Access to physical therapy
Surveillance, case management

Community (e.g., prevention of substance abuse)
Self-help, education
Support, role modeling
Information, services
Surveillance, services
Promotion of opportunity
Community (e.g., return to work)
Employment skills
Support
Job placement, on-site support
Surveillance, coordination with voc rehab

Clinical (e.g., teaching self-care skills)
Self-care management
Support, case management
Access
Surveillance

Patrick D, Richardson M, Starks H, Rose M, Kinne S. Rethinking prevention for people with disabilities, Part II: A framework for designing interventions. American Journal of Health Promotion. 1997;11(4):261-263.

Table 2.?Preventive Intervention Protocols for People with Disabilities: Format and Content

Step
Description
Describe population

* Diagnostic criteria, primary impairment, and description of total population affected
State problem

* Risk factor in total environment: the disabling process, e.g., secondary condition, component of opportunity
* Prevalence and incidence of problem
* Impact of problem on disabling process including modifiable and non-modifiable risk factors, protective factors
* Interaction between primary impairment and problem
* Impact on opportunity and barriers to quality of life
Level of  prevention
* Prevention or modification of risk factors (primary prevention), prevention or interruption of disabling process (secondary prevention), or promotion of opportunity (tertiary prevention)
Target population
* Description of target population for protocol by age, gender, severity of impairment, and other relevant exclusion or inclusion criteria
Participants
* People with disabilities, family members, clinicians, educators, advocacy groups, administrators, peers, others
Locus of intervention
* Clinical or community-based setting
Recommendations of Others
* Recommendations for prevention, search phase targeted in recommendations, target population of recommendations, evidence of effectiveness
Proposal for intervention
* Theoretical rationale for intervention
* Intervention methods by participant and their respective roles
* Specification of outcomes and measurement
* Criteria to be used in evaluating intervention and measurement
Research phase
* Basic research, hypothesis development, pilot applied research, prototype study, efficacy trial, treatment effectiveness trial, implementation effectiveness trial, demonstration, cost-effectiveness study
Recommendation
References
Ratings
* Recommended actions/interventions
* Relevant literature
* Strength of recommendation and quality of evidence

Patrick D, Richardson M, Starks H, Rose M, Kinne S. Rethinking prevention for people with disabilities, Part II: A framework for designing interventions. American Journal of Health Promotion. 1997;11(4):261-263.


References
1. U.S. Department of Health and Human Services. Healthy People 2010. With Understanding and Improving Health and Objectives for Improving Health. 2 ed. Washington, DC: U.S. Government Printing Office; 2000.
2. Kinne S, Patrick D, Maher E. Correlates of exercise maintenance among people with mobility impairments. Disability and Rehabilitation. 1999;21(1):15-22.
3. Patrick D. Rethinking prevention for people with disabilities, Part I: A conceptual model for promoting health. American Journal of Health Promotion. 1997;11(4):257-260.
4. Pope A. Preventing secondary conditions. Ment Retard. Dec. 1992;30(6):347-354.
5. National Center on Birth Defects and Developmental Disabilities. Disability and health [web site]. 2002. Available at: http://www.cdc.gov/ncbddd/dh/. Accessed October 7, 2002.
6. Centers for Disease Control and Prevention. State-specific prevalence of obesity among adults with disabilities--eight states and the District of Columbia, 1998-1999. MMWR. September 13, 2002;51(36):805-808.
7. Weil E, Wachterman M, McCarthy E, Davis R, Iezzoni L, Wee C. Obesity among adults with disabling conditions. JAMA. Sep 11, 2002;288(10):1265-1268.
8. Haddix A, Teutsch S, Shaffer P, Dunet D. Prevention effectiveness: a guide to decision analysis and economic evaluation. New York: Oxford UP; 1996.
9. Charlton J. Nothing about us without us : disability oppression and empowerment. Berkeley: University of California Press; 1998.
10. Rioux M, Bach M, eds. Disability is not measles: New research paradigms in disability. North York, Ontario: Roeher Institute; 1994.
11. President's Council on Physical Fitness and Sports. The PCPFS Page [web site]. Available at: http://www.fitness.gov/. Accessed September 24, 2002.
12. National Institute of Diabetes and Digestive and Kidney Diseases NIoH. Weight-control Information Network page [web site]. Available at: http://www.niddk.nih.gov/health/nutrit/win.htm. Accessed September 24, 2002.
13. Agency for Healthcare Research and Quality. Health Care: U.S. Preventive Services Task Force Subdirectory Page [web site]. Available at: http://www.ahcpr.gov/clinic/uspstfix.htm. Accessed October 7, 2002.
14. Task Force on Community Preventive Services. The Community Guide [web site]. Available at: http://www.thecommunityguide.org/. Accessed October 7, 2002.
15. Workgroups on Prevention for People with Disabilities. Promoting the Health of People with Disabilities: Protocols and Preventive Interventions. Seattle, WA: Center for Disability Policy and Research; 1996.
16. Patrick D, Ramsey S, Spencer A, Kinne S, Belza B, Topolski T. Economic evaluation of aquatic exercise for people with osteoarthritis. Med Care. May 2001;39(5):413-424.
17. Lorig K, Ritter P, Stewart A, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. Nov 2001;39(11):1217-1223.
1997;51(2):151-164.
18. Rixford M. From the wall of the city: disability as a culture. J. Pastoral Cae. Summer 1997;51(2):151-164  
19. Wang C. Culture, meaning and disability: injury prevention campaigns and the production of stigma. Soc Sci Med. Nov 1992;35(9):1093-1102.
20. National Center on Physical Activity and Disability. National Center on Physical Activity and Disability Home Page [Web site]. October 1, 2002. Available at: http://www.ncpad.org/. Accessed October 7, 2002.
21. Watchfire Corporation. Welcome to Bobby Worldwide [web site]. Available at: http://bobby.watchfire.com/bobby/html/en/index.jsp. Accessed October 8, 2002.
22. McGinnis M, Williams-Russo P, Knickman J. The case for more active policy attention to health promotion. To succeed, we need leadership that informs and motivates, economic incentives that encourage change, and science that moves the frontiers. Health Aff (Millwood). Mar-Apr 2002;21(2):78-93.
23. Dejong G, Palsbo S, Beatty P, Jones G, Knoll T, Neri M. The organization and financing of health services for people with disabilities. Milbank Q. 2002;80(2):261-301.
24. Dejong G. Post-rehabilitation health care for people with disabilities: an update on the 1989 White Paper of the American Congress of Rehabilitation Medicine. Arch Phys Med Rehabil. Dec 1993;74(12 Spec No):S2-7.
25. Dejong G. Primary care for people with disabilities. An overview of the problem. Am J Phys Med Rehabil. May-Jun 1997;76(3 Suppl):S2-8.
26. United States Department of Health and Human Services CfDCaP, National Center for Chronic Disease Prevention and Health Promotion, Division of Adolescent and School Health. Youth Risk Behavior Surveillance System [web site]. Available at: http://www.cdc.gov/nccdphp/dash/yrbs/. Accessed October 8, 2002.
27. Consortium for Spinal Cord Medicine. Pressure Ulcer Prevention and Treatment Following Spinal Cord Injury. Paralyzed Veterans of America [web site]. Available at: http://www.pva.org/NEWPVASITE/publications/cpg_pubs/PressUlcer.htm. Accessed October 8, 2002.
28. Consortium for Spinal Cord Medicine. Neurogenic Bowel Management in Adults with Spinal Cord Injury. Paralyzed Veterans of America [web site]. Available at: http://www.pva.org/NEWPVASITE/publications/cpg_pubs/BowelProfessional.htm. Accessed October 8, 2002.


HEALTH INDICATORS WORKGROUP RECOMMENDATIONS

Health Indicators  - Policies and Programs ACTIONS 

1.  Establish an ongoing workgroup to create coordinated activities around the leading health indicators at the national, state, and local levels for people with disabilities, specifically those related to a Healthier US.  The first priority for the group is to develop new or tailor already-existing consumer-friendly materials, particularly weight, exercise, smoking and access to care, and implement a distribution system for them.  

2.  Integrate issues for people with disabilities into existing disaster preparedness and emergency response plans.   

Discussion 
This workgroup discussed health issues and how they intersect with policy and programs, and then identified major themes.  The group used this discussion as a foundation in making its final recommendations for HP 2010 action steps.  The themes were: 

1. Training
2. Research
3. Practice
4. Policy
5. Collaboration
6. Dissemination
7. Utilization
8. Innovation

Potential activities for training included organizing educational events (e.g., workshops, conferences), preparing brief guidelines for professionals and consumers, developing curricula on a variety of topics for a variety of audiences, and developing cultural/disability competence (e.g., for health workers regarding disability culture), and identifying effective training theories and methods to enhance health behavior change.

Research will include conducting longitudinal studies focused on the impact of health behavior change in terms of the leading health indicators, promoting the paradigm of health and wellness, conducting surveys to gather data from health departments, providers, and constituents, evaluating effectiveness of programs including the need for fundamental development of measures.  It will be important to target multiple constituencies and develop indicators for functional and other health outcomes.  

Practice will require the availability of accessible screening procedures.  Partners will need to integrate accessibility information into all health providers directories and listings.  Organizations such as the Commission on the Accreditation of Rehabilitation Facilities (CARF) and Veterans Administration (VA) will be required to set standards for health indicators.  It is important to not begin with disability as an indicator, but rather have the indicator be health and how it can interface with disability.  One example of this is calling a womens conference on health and focusing on wellness and health as opposed to disability.  It will also be prudent to integrate disability information into all mainstream health information.  CARF should also review health services practices and protocols affecting people with disabilities (e.g., mammograms).  In addition, educating people with disabilities about health behavior change should be emphasized.  

Policy development (as a brand of forum) and legislative action (lobbying, networking, advocacy) with consortia will need to be addressed.  Also, it will be important to collaborate with HMOs and other managed care organizations.  We recommend increasing funding for health promotion programs.

An essential aspect of collaboration will be to incorporate spinning off wellness concepts through other major disability-related organizations (e.g., Centers for Independent Living).  Also, build consortia among the various organizations around a specific topic and find powerful partners to make things happen.

As actions concern the theme of dissemination and utilization, address professional and consumer audiences and focus on effective dissemination and health communications.  Emphasize social marketing and utilization including following up on what works and what does not.

Finally, keep innovation on the forefront of action.  Think beyond structure (e.g., the Center Without Walls concept that has been conducted by the Paralyzed Veterans of America (PVA) and VA.  Also, keep sustainability in mind.

Background on actions 
The workgroup refined the components from the seven themes to develop overall recommendations that we believe further elucidate the actions.  These were the major recommendations translated into actions.  

1. Develop a health communications strategy that includes social marketing tactics for the general population, people with disabilities, clinicians, providers, and funding agencies. 
Establish a Web-based national clearinghouse to promote dissemination of health promotion and prevention of secondary conditions research and program information and publications.  Ensure (lobby, advocate, educate) that adequate resources are targeted toward health promotion and prevention/management of secondary conditions.  Who gets what? When? Where?

2. Integrate disability-related health programs across all aspects of the public health, clinical practice, and research infrastructure.

-Do not start from disability orientation; focus on wellness, function, and health for all people.
-Require state public health contractors and their community subcontractors to demonstrate they are accessible for people with disabilities.
-Assure that public and private health providers are adequately trained on health promotion and prevention of secondary conditions for people with disabilities. 
-Create a training program similar to the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs to conduct pre-service training for health professionals working with adults with disabilities.
-Encourage professional licensing and certification groups to include requirements for disability and health training.

3. Federal funding agencies, and disability and advocacy organizations should promote transfer of research findings into practical application to increase health and reduce secondary conditions.  

4.  Place strong emphasis on researchers developing consumer-friendly materials in addition to materials targeted toward professionals.
      
5. Tax credits and incentives to increase physical access to health care facilities and services.  

6. Develop exemplary programs, policies, and practices regarding disaster preparation and emergency response for people with disabilities.  

Partners
Government
Department of Health and Human Services (DHHS) 
Centers for Disease Control and Prevention (CDC), Division of Disability and Health
Administration on Developmental Disabilities (ADD)
National Institutes of Health (NIH), National Center for Medical Rehabilitation Research at NIH  (NCMRR) 
National Center on Physical Activity and Disability (NCPAD) 
Department of Education (DOE), National Institute of Disability and Rehabilitation Research (NIDRR)
Federal Emergency Management Agency (FEMA)
Politicians at state level
State Disability and Health Programs 

Non-government
American Association of Health and Disability (AAHD) 
Association of Teachers of Preventive Medicine (ATPM) 
Society for Disability Studies (SDS)
American Public Health Association (APHA) Disability Forum
American Association on Mental Retardation (AAMR)  
Association of University Centers on Disabilities (AUCD)	
American Public Health Association (APHA)
The Arc
Universities - University of Kansas, New Mexico Department of Health, Iowa Department of Public Health, Center for Disability Issues and the Health Professions at Western University of Health Sciences, Pomona, California

Health Indicators  Data ACTIONS  

1.  Establish a workgroup to monitor efforts to measure disability status and coordinate efforts to include such a measure in relevant HP 2010 tools.  

2.  Use the same workgroup to establish liaisons with relevant HP 2010 focus areas to identify current disability identifiers where such exist and include these identifiers in analyses of sub-populations.

Discussion
During the group discussions, the subjects of definition and functionality were addressed as they related to health indicators.  The definition of disability differs in surveys and we must determine the most appropriate definition to use.  Therefore, one key purpose of data collection is to define what is meant by disability.  The group agreed that a broader definition is probably best for the largest number of purposes, but the ability to more narrowly define this term should be included in a measure.

Two major statutory definitions are those associated with Social Security legislation and with the Americans with Disabilities Act (ADA).  The former is a narrow definition focusing on medical conditions that limit the ability to work; it is used to keep people in the workforce.  The latter definition is broader and related to protecting the civil right to participate in a number of activities, not just employment.  ADA is not associated with medical definitions, but it is linked to the ability to perform major roles in society.  It also includes a component associated with personal identification (or identification by others) as disabled.

If we are seeking to develop a surveillance instrument, is a broader definition or a narrower one going to best meet our purposes?  A narrow definition will limit the surveillance to those with the most severe disabilities; a broader one would allow for surveillance at two levels.  For those at the more severe level, surveillance would assist with prevention of secondary conditions and would indicate the level of risk behavior (smoking, obesity, etc.) that needs attention.  At the same time, inclusion of less severe disabilities would provide a wider net to identify risk behavior before the level of severity made changes more difficult (e.g., the ability to exercise is restricted by the increasing limitations).  Therefore, it is essential to determine the important criteria of surveillance; this will help indicate the nature of the definition that is needed.  Perhaps both definitions are needed depending on the objectives of the particular analysis.  

One long-range problem involves understanding that an individuals environment is often highly associated with his/her disability.  It is possible that surveys need to focus on environments as opposed to the individual exclusively.  However, it is much more difficult and complicated to measure the environmental characteristics of a job site, home, or community.  

Disability can now be defined as a level of functioning through the use of the International Classification of Functioning, Disability, and Health (ICF).  This is particularly useful in a clinical setting where a medical practitioner interacts with the person.  Development of a coding protocol similar to the International Classification of Diseases (ICD10) can be used in medical records to identify the functional level, to track changes in functioning, and to accumulate overall functioning of the individual.  If the health care system can begin to provide information on functioning, we can do epidemiologic research based on medical and organizational records.  This has the potential to change reimbursement processes by linking it to functioning, as we now link it to disease (diagnostic and therapeutic reimbursement coding).  This process is more of a long-term action and can progress in incremental steps.  Development of a codebook for this purpose and discussions with the Centers for Medicare and Medicaid Services (CMS) to provide this information on encounter forms are good first steps.  

Partners   
Government
Department of Education (DOE)
National Institute of Disability and Rehabilitation Research (NIDRR)
Interagency Subcommittee on Disability Statistics (ISDS)
Department of Health and Human Services
Agency for Healthcare Research and Quality (AHRQ)
Centers for Disease Control and Prevention (CDC)
National Center for Health Statistics (NCHS)
Centers for Medicare and Medicaid Services (CMS)
Office of Assistant Secretary for Planning and Evaluation (ASPE)
Office of Disability (DHHS)

Non-government
Association for Retarded Citizens (The Arc)
University Affiliated Programs (UAP)

Paper on Family Caregiving, Long-Term Care, Personal Assistance Services: Caregiving the Role of Public Health in Supporting People with Disabilities in the Community.

John E. Crews, DPA
Health Scientist
US Department of Health and Human Services
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities 
Division of Human Development and Disability
Atlanta, Georgia

Healthy People 2010 Focus Area 6 Objectives:

Objective 6.7a:  Reduce the number of adults aged 18-64 years in congregate care facilities by 50 percent. 

Objective 6.7b:  Reduce to zero the number of children aged 17 years or younger living in congregate care facilities.  

Objective 6.13:  Increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers.

Prologue
I want to tell a story to, perhaps, indicate why we are here.  Ten years ago, my wife, Nancy, and my daughter, Kate, and I moved to Atlanta from Michigan.  Kate had belonged to the Girl Scouts in Michigan, and she joined a small troop once we got settled into a new home.  She was about eleven then.  Unlike Michigan, Girl Scouts sold cookies door-to-door but also set up stands at grocery stores.

One crisp October Saturday, Kate and her troop were stationed outside the local Kroger store with stacks of unsold Do-si-dos, Thin Mints, and Caramel deLites.  Nancy and I took a seat in the grocerys deli and observed the proceedings from inside.

There was an old man, about 75, who was working as a bagger, and he helped carry bags of groceries to peoples cars.  As he walked by, he acknowledged Kate, and with each trip he engaged with her more.  First, he just spoke to her, then he bought a box of cookies, 
and then he began to direct shoppers to buy from these girls.  This went on all morning, and the mountains of cookies declined remarkably.

At about noontime, we stepped outside, and this old man came up to us and asked,
Are you that little girls parents?  Yes, we replied.  He said, I have a little girl who uses a wheelchair, too.  He asked how old Kate was; we said eleven.  Then Nancy asked, How old is your little girl? He replied, Shes 46 years old.

We then had a remarkably candid and honest conversation?the kind that only people who have greatly shared experiences can have.  He told us that he and his wife were having difficulty lifting their daughter and he explained that baths were especially hard.  He said he was just getting old, and he didnt know how much longer he could lift her into bed.  Then he said, I only hope I live one day longer than my daughter. We were silent.

I never got the old mans name.  I have no idea what happened to him or his family.  But I think about him often.  Well?each of us here today could likely reconstruct their story.  He wasnt bagging groceries at age 75 because he wanted to get out on Saturdays; I suspect he needed the money.  His daughter would have been born in about 1946, when the only choice was to stay at home with absolutely no supports or to live at the Milledgeville State Home.  His daughter would have been 30 when the Individuals with Disabilities Education Act (IDEA) passed.  When the time came for her to move into the community, there were no community supports.  So once again, there was no choice.

If the old man were still alive, he would be about 85, my mothers age.  His daughter would be 56, my age.  Kate, by the way, grew up?shes 21?and attends Agnes Scott College here in Atlanta.  The power of this story is that we can all relate to it, at least at some level.  While progress has been made in disability rights and disability services during the course of these 50-odd years, there remains a huge gulf in services, supports, and policies that we are trying to bridge

I would assert that society simply failed this old man, his wife, and his daughter.  That failure stemmed from a lack of support to families and a lack of support to people with disabilities to live with dignity, self-direction, and control in the community of their choice?the very concerns we are still trying to resolve today.  Our charge over the next two days, I would suggest, is to keep in mind this family, and the hundreds of thousands of families who are giving care and the hundreds of thousands of people with disabilities who want, should, and can live in the community.  The litmus test for our success must, in my view, be demonstrated in the lives of people, one at a time, to live where and with whom they wish, and with the supports to be active citizens in the community.

Introduction
In December 2002, eighty leaders from universities, non-governmental organizations, and state and federal government convened in Atlanta to identify broad strategies to implement the thirteen objectives of the Disability and Secondary Conditions Chapter/Focus Area 6 of Healthy People 2010.  Meeting in small groups, these individuals responded to five guiding questions to 1) characterize the practicality of each objective, 2) identify major problems in addressing the objectives, 3) define partners, 4) identify current and potential programs and policies supporting the objectives, and 5) identify mechanisms to track progress toward meeting these objectives.  The resulting document, Vision for the Decade: Proceedings and Recommendations of a Symposium summarized the deliberations of that meeting.

This paper serves as a synthesis of the discussion of long-term care, personal assistance, and family caregiving services drawn from Vision for the Decade.  This summary discussion is divided into three sections addressing data needs, policy implications, and program implementation. 

Long-term care, personal assistance services (PAS), and family caregiving represent dimensions of the supports required for people with disabilities to maintain health, perform various activities, and to participate in the community.  In the best of worlds, these three concepts should be respectful of the person, consumer-driven, and integrated into complementary and seamless supports for people with disabilities as well as those who care for and about them. 

Therefore, the aim outlined in the Disability chapter/focus area of Healthy People 2010 is to reduce the national commitment to congregate care while commitment is increased to support people with disabilities in the community.  Congregate care is represented by institutional bias to care for people in state facilities and nursing homes.  Community supports are represented by providing personal assistance services, creating supportive policies and environments, establishing adequate resources to sustain community supports, and supporting families as caregivers.

The requirement to reinvent this system is being driven by many factors.  They include the rising expectations of people with disabilities to control their own lives, the aging of the general population, the impending aging of baby boomers, the increasing longevity of people with disabilities, and family caregiving responsibilities that include children, adult children, and aging parents.  

The goals to reduce congregate care and increase community-based service and support to families are embedded in three objectives of the Disability chapter/focus area:  

Objective 6.7a reads: Reduce the number of adults aged 18-64 years in congregate care facilities by 50%
      
Objective 6.7b reads: Reduce to zero the number of children aged 17 and younger living in congregate care facilities.

Objective 6.13 reads: Increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers.

Perhaps it goes without saying that public policies should foster the reduction of long-term care by creating systems of community-based services that support people with disabilities in the community.  A part of the community-based system is defined by people (mainly families) who provide caregiving to children, adults, and older adults.  

The Vision for the Decade paper argues that, Congregate care settings diminish peoples opportunities to realize the essential features of human beings: choice, control, ability to establish and pursue personal goals, family and community interaction, privacy, freedom of association, and the respect of others.   

For children: Permanency planning means that both state and federal policies affirm the principle that all children, regardless of disability belong with families and need enduring relationships with adults.  Permanency planning also means that state budgets should commit the necessary resources to support children with disabilities and their families.  Permanency planning for children is initially family-directed; however, the planning process must become increasingly person-directed as a child matures and transitions into adulthood.

For adults: Congregate placements for adults should be reduced by 50%.  For adults currently residing in congregate care settings, state and federal government policies must also affirm the need for community-based alternatives.  This should be accomplished by effectively funding community alternatives such as the Medicaid Home and Community Based Service (HCBS) Waiver Program, and other individualized services and supports for people with disabilities and their families.  States should develop mechanisms for conducting person-directed planning for adults with disabilities.  To avoid institutionalization, careful family and person directed planning, and adequate community support, must be in place for transitioning for children with disabilities to adulthood.

Finally, as the authors of the discussion of Objective 6.13 observed, the needs of people who benefit from personal assistance cannot be easily separated from the needs of people who provide assistance.  In part, we have to focus on caregivers, because families are often the ones who most reliably pitch in when the community-based system fails.  By and large, we have not framed caregiving as a public health issue, but we are increasingly recognizing that the health and well-being of caregivers is of critical importance. Just as the environment may serve to support people with disabilities, it, too, may support people to be caregivers.  We know that the failure of the health of caregivers often leads to a collapse in the delicate caregiving system.  

The authors of the discussion of Objective 6.13 note, as well, that the health of caregivers may be sustained by enhanced coverage and improved employment support for paid providers of care, for home modification, or for assistive technology, rather than other health promotion activities specifically aim at the health and quality of life of caregivers.

It has taken us decades to be able to assert that disability is a multidimensional experience and to create a framework like the International Classification of Functioning, Disability, and Health (ICF) to capture this complexity.  Similarly, community supports and support systems are equally multidimensional and fluid.  

Data
We need to assemble data at the micro level to describe the multidimensional characteristics of human experience, and we need macro-level data to characterize services and environments at the community, state, and national levels or reveal macro-level changes.

Fundamentally, we need consistent operational definitions to describe the characteristics and circumstances of people with disabilities over the life span, perhaps particularly during transition years for young adults and for people living into old age.  We need to think about core data sets, common data, and key indicators.

If caregiving, community supports, and congregate care are viewed as interrelated services (with the goal to move towards community supports), then data are required to characterize the movement toward community-based services.  Therefore, data elements should capture the movement away from institutional care toward supporting people with disabilities and caregivers in the community.  

Data exist regarding the numbers of people with developmental disabilities served in long-term care facilities.  The Minimum Data Set will provide data regarding the numbers and some characteristics of people in nursing homes. 

Data exist to characterize 1) disparities in commitment of states, 2) disparities in the commitment of communities, and 3) to some extent, disparities that are known regarding financial commitment by states and communities. 

Data do not exist to define future need or to predict the costs of serving people in various settings.  Not much is known about personnel recruitment and retention for personal service assistants.    

The Vision document does not indicate the availability of data elements framed around the ICF to characterize activity, participation, the environment, and social supports.  And it is not known how the environment or caregivers are related to the risk of institutional care.  Not much is known about transitions.  Not much is known about the role of caregivers in preventing institutionalization except among older people.  Data are needed to characterize caregivers over the lifespan and to capture the magnitude, dimensions, and changing nature of caregiving.  Operational definitions are needed regarding caregiving so that more consistent information can be gathered.

At a more macro level, we need data to characterize best practices of PAS, long-term care, aging in place, and caregiving supports, and we need information that consistently characterizes exemplary programs and best practices. We need data to anticipate future needs and cost of community services. Finally, the Vision document noted that we need to uncover hidden issues. So we need data that not only captures the numbers of people involved, but we need to capture the dynamic and fluid characteristics involved in moving and supporting people in the community.  The data must reflect qualities as dynamic as this human experience.

Policy
Recently available data show that an estimated 9.4 million adults ages 18 and over need hands-on assistance to carry out either instrumental activities of daily living (IADLs)?chores such as shopping and housework?or for more basic activities of daily living (ADLs), such as bathing and dressing.  Roughly 79% of these people live at home or elsewhere in the community rather than in institutions, and almost half are under 65 years of age.

At the most fundamental level, state and federal policies need to be reframed to create incentives for family and community support versus institutional services and at the same time remove disincentives for service and supports for family and community living.  Moreover, health care policy must be reframed to move away from acute care to meeting nonmedical needs of people with disabilities.  Policies must address the health of caregivers as a public health issue and recognize the increasing demands on caregivers as the population ages.  

Adequate funding should be provided that is attached to people, not beds or programs.  Programs should address life-span concerns and the need for transition programs.

Policies and reimbursement programs must recognize that nonpaid relatives, primarily women, bear the majority of the responsibility for caregiving in the United States.  Family caregivers have major unmet needs that will only increase as the population ages.
How practical are the goals?  These objectives are achievable if and only if it is the will of the federal, state, and local governments, and of the private sector to provide the resources needed, and to structure policies and programs necessary to support families, and individuals.

Wide disparities exist in programs, funding, and social and policy commitments from state to state.  Wide disparities exist regarding community supports, and support of caregivers.  Wide disparities exist in the expectations of consumers.  Policies should shift to create more consistency and transferability from state to state.  

Large numbers of these adults will require increased support as both they and their family caregivers age.

Modify policies to eliminate service gaps
Service gaps can be eliminated by modifying existing policies to address the following issues.

1. There are tens of thousands of families and individuals eligible, but still waiting for support; there are people who have been authorized for support but who are not getting what they are authorized to receive (Vision).

2. Given the options, people often seem to feel they do not have the right to request the service they need in the places they want to live.

3. There are significant personnel recruitment/retention difficulties for attendants, personal assistants, in-home support staff, and direct support staff; this limits the capacity to develop and maintain community and family services.

4. There are few, if any, transition programs.

Incentives for Community Support
There is a lack of federal incentives for family and community versus institutional services.  Why is the matching rate in Medicaid the same for institutions as for the Medicaid Home and Community Based Services (HCBS) Waiver?  Why not use a Federal Medical Assistance Percentage (FMAP) rate incentive like that used with the Childrens Health Insurance Program (CHIP)?  The nation must develop the financial commitment to funding long term care, especially because aging baby boomers?both people with disabilities and caregivers?have needs that will dramatically increase in the years ahead (Objective 6.7, Vision).

1. Remove federal and state disincentives to family and community living (e.g., loss of health care coverage).

2. The Federal government should establish incentives for family and community support that are more attractive than institutional services.

3. Federal and state governments must develop commitment and policies to ensure an adequate workforce (pay, benefits, recruitment, and training).

4. Social Security Administration (SSA) should enlist the help of CDC to implement The Ticket to Work and Work Incentives Improvement Act of 1999, as well as other incentives.

5. Federal agencies should coordinate efforts to see that all funding programs, policies, and procedures effectively promote integrated community services and supports that promote maximum use. 

6. Voucher programs should be considered to attach dollars to people, not beds.

Housing 
There is a severe shortage of affordable, accessible and useable housing that people with disabilities require in order to live in non-congregate arrangements.

Personal Assistance Services (PAS)
Government policies and funding do not effectively provide for adequate numbers of personal assistants.  Various policy changes are needed to increase self-directed personal assistance.

Assistive Technology 
Funding and policy changes are needed to supply assistive technology devices and services.

Health Care 
Healthcare policy still remains oriented to acute care.  Too often this means that the accepted outcome is either cure or death, without the necessary emphasis on meeting the nonmedical needs of people with disabilities. 

Family 
1. Adopt permanency-planning principles for children and person-directed planning for adults in legislation, program policies, and procedures.

2. Some states have developed road maps to show how to achieve important community and family support objectives.  We need to highlight state and local progress in important areas and have these leaders provide technical assistance to other states and communities that have further to go.

3. Provide training, show how to shift the funds, and continue to develop the collective willingness to follow a road map.

4. State Title V annual reports should be required to report annually on progress in each state regarding permanency planning objectives.  The steps taken in each state to promote permanency-planning principles, including deinstitutionalization, should be reported.

Community infrastructure (Vision)
Reduce and prevent institutionalization by promoting community integration

1. Studies on reducing congregate care provide valuable advice on careful deinstitutionalization planning.  Funding agencies should study the characteristics, actions, policies, organizational structure, and financing of leader states and communities and the ways those elements can be replicated.

2. Ensure that dollars are attached to people, not beds or programs, such that people with disabilities and those they trust (including family members, neighbors, friends, and service providers) control resources.

3. Government and people with disabilities and their allies must be partners in changing general social culture so that the general population increasingly views people with disabilities as full and valued members.

4. The federal government should commit to a policy of people being able to age in place such that services come to people rather than making people move to where the services are provided.  This policy and principle is established in research literature on aging, and should also benefit people with disabilities as they age  (Vision).

Appropriate Data
Appropriate data are needed to fulfill these recommendations.

1. Identify a core set of data descriptive of the resources, programs, and policies affecting long term care and support that would guide Healthy People 2010 objectives (Vision).

2. Identify states that are exemplary in terms of 1) resource allocation, 2) developing programs and policies that promote permanency planning and individual and family support, and 3) having data sets descriptive of these systems of services.

3. Make recommendations regarding the elements of common data sets and how exemplary states have maintained such data sets.

4. Determine the possibility for and costs of a national reporting system of key indicators of needs (i.e., resources and people).



Programs 
Recommendations for programs are as follows. 

1. Provide an appropriate array of housing, services, and supports:

* People with disabilities and families should receive supports in a reasonable amount of time (90 days).
* Provide a wide range of support to people with disabilities and their families.  (Personal care, supported employment, in home supports, respite care, behavior support, and transition planning).
* Dramatically increase the amount of affordable, accessible, and useable housing and assistance with housing modifications and equipment (Vision).

2. Adopt permanency-planning principles for children and person-directed planning for adults in legislation, program policies, and procedures (Vision).

3. Provide training to show how to shift funding to community services (Vision).

4. Develop interventions to address the health of caregivers (Vision).
      
5. Expand state projects to 25 by the year 2005 and 51 by 2010 (Vision).

6. Help to identify the priority health-related needs of caregivers to create a foundation for addressing health and well-being of family caregivers  (Vision).

7. Identify, nurture, and expand coalitions addressing these problems.

8. Develop more cross disability approaches to solving these problems.

9. Establish caregiver agency/network in the states.

10. Work with various constituencies to embed health into policy and practice?partners range from state legislatures to Centers for Independent Living (CILs).

11. Provide wider opportunities for individuals and families to use programs that support community and family living, including, but not limited to:
      
* Personal care options and other types of personal assistance and supported living
* Supported employment
* In home supports to families, respite care, and specialized daycare
* Alterative family arrangement (shared parenting)
* Specialized foster care (supporting the concepts of permanency planning)
* Behavioral support and crises response
* Accessible, usable, and affordable health care, health promotion, and prevention
* Individual service coordination (independent case management)
* Transition planning and supports
* Training for foster care

12. Work to better understand and enforce accessibility laws consistent with Americans with Disabilities Act (ADA) (Vision).

13. States should develop mechanisms for conducting person-directed planning for adults with disabilities.  To avoid institutionalization, careful family and person-directed planning, and adequate community support must be in place for transition for children with disabilities to adulthood (Vision).

Epilogue
In 1845, Henry David Thoreau left Concord, Massachusetts to live at Walden Pond for two years.  The result was a long reflection of that experience in the book Walden.  Thoreau was an essayist, of course, and many of his admonitions to live deliberately and to simplify, simplify, simplify are pretty much embedded in our collective American experience. In the second chapter of Walden, Where I Lived and What I Lived For,  Thoreau struggles with the purpose, choice, and the dignity of solitude and self-direction.  He deals with the fundamental purpose of humans to conduct their lives as they choose to do?whether at Walden Pond or here in Atlanta. So the issues before us today are precisely the same that troubled Thoreau 160 years ago.  Near the end of Walden he gives some advice that is as relevant today as it was in 1845.  He wrote: If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.


CAREGIVING/PERSONAL ASSISTANCE SERVICES 
WORKGROUP RECOMMENDATIONS

Caregiving/Personal Assistance Services  Policy and Program ACTIONS 

1.  Create standard terms in the field of caregiving, designating appropriate distinctions among various types and providers of caregiving, such as those who provide care because of an emotional bond with the person needing care and those for whom it is a job or career.  

2.  Develop an agenda to eliminate the shortage of personal care workers (home care aides, Personal Assistance Services [PAS], etc.).  Create career paths including increased training and education, improved pay, and other appropriate benefits.
	
3.  Work with states to enhance their efforts to move children and adults into community-based living, consistent with the Olmstead decision.

Discussion
The group brought together to discuss Objectives 6.7 and 6.13 was quite diverse?from different backgrounds and different perspectives.  Therefore, initial discussion focused on finding common ground.  For instance, the term caregiver had a different meaning to different participants.  For some it meant family caregiver, for some it referred to paid providers such as home care aides, and for others it was a generic term that related to anyone providing care.

In addition, the discussion seemed to highlight the lack of a bridge between adult disability advocates, parents of children with special needs, other family caregivers, and groups focused on a specific disease/condition.  This in itself is a problem because it implies common issues are not being worked on in concert, but rather, they are addressed strictly from the perspective of individual silos.  This was evident in the listing of the many activities and initiatives that are occurring both federally and in the states.  The list ranged from activities spurred by the Olmstead decision to initiatives that provide training for family caregivers.  The need for public education campaigns was emphasized. 

Despite the disparate nature of the group and, in some ways, the objectives themselves, the group was able to recognize common areas of concern that led to the action items.

Partners
Government
Department of Health and Human Services (DHHS)
Centers for Disease Control and Prevention (CDC) 
Centers for Medicare and Medicaid Services (CMS)

Non-government
American Red Cross
Children of Aging Parents (CAPS)
Community colleges
Disability organizations interested in improving the capabilities of and expanding the personal care attendant (PCA) workforce
Family Caregiver Alliance (FCA)
Foundations interested in health issues  i.e., Robert Wood Johnson Foundation, Commonwealth Fund, Grantmakers in Health (an umbrella group of health-focused philanthropies
Homecare Agencies/industry associations
National Alliance for Caregiving (NAC)
National Family Caregivers Association (NFCA) 
Paraprofessional Institute
Rosalynn Carter Institute for Human Development (RCI)
Schools of Public Health

Caregiving/Personal Assistance Services  Data Draft 12/18/02 ACTIONS

1.  Communicate and cooperate with agencies and organizations to develop and field questions on caregiving in national and state surveys.

2.  Analyze and broadly disseminate currently available data on caregiving and explore future national and state-based data on caregiving across the life span.

3.  Explore the use of other data sets to collect caregiving information, such as those for individuals with developmental disabilities and national and state education data sets.    

Discussion
The International Classification of Functioning, Disability, and Health (ICF) is a major milestone in advancing data collection on people with disabilities.  Various existing data sets are potentials for yielding data helpful in measuring objectives 6.7 and 6.13: Medical Expenditure Panel Survey (MEPS), Behavioral Risk Factor Surveillance System (BRFSS), etc.  There are gaps in existing data on congregate care and especially sparse aggregate data on community-based services and access to such services.  The group discussed the use of community report cards and various models of community assessment.  The use of technology to improve data collection, tracking, mapping, and so on, was discussed and supported.  There needs to be collaboration between adult and child data collection efforts and service delivery systems.  We worked to generate specific, feasible recommendations and action steps to assess and monitor the nations progress toward these Focus Area 6 objectives.

Overarching data recommendations include performing an in-depth analysis of the various federal/national or state level data sets in order to identify data currently being collected that can be used to measure progress toward the Focus Area 6 objectives.  We suggest creating an inventory/ matrix of these data.  We also suggest creating a standardized definition of disability based on the ICF coding structure and insert the ICF coding into federally funded health care reimbursement systems.  Other recommendations would be conducting a periodic national disability survey and assuring that national/federal surveys are designed and conducted such that people with disabilities are over-sampled and/or accommodated to ensure representation in the survey sample with sufficient prevalence to make separate estimates for the disabled population.  In addition, we recommend including a measure of disability as a core demographic variable in federal/national surveys.

Federal and national data collections that relate to people with disabilities must include information on caregivers, support systems, and living situations, not just person-level data.  We will disseminate and discuss information about the relevance of the data for these objectives, and educate community, academic, and government groups about this issue.  

As it regards Objective 6.7, it was noted that this goal would be stated more appropriately from a statistical perspective as decreasing the proportion (versus identifying a number) of people with disabilities in residential care facilities.  As the population in general ages over time, the number of people in congregate care facilities may concurrently increase.  As it concerns other terminology, currently, only three states utilize the term congregate care.  Terminology is quite variable across states; other terms used include Adult Care Facilities/Homes, Residential Care Homes/Facilities, Personal Care Homes, Intermediate Care Facilities for the Mentally Retarded (ICF-MR), Boarding Care Homes, Community Residential Care Facility, Adult Foster Care Homes, Assisted Living Facility/Center, Sheltered Care Facilities, long-term care (LTC) hospitals/wards and Supported Living.  In total, there are over 110 separate state regulations that govern these types of places.

The workgroup discussed interagency efforts to enhance federal data collection efforts to improve the measurement on people in residential care facilities.  There is currently no national sampling frame of long-term care residential care service providers and providers vary widely across states.  In the past, national frames have been developed for psychiatric settings (hospitals and group homes), mental retardation/developmental disabilities (MR/DD) in state institutions and group homes, and nursing homes, but not for congregate care, residential care, or assisted living.  These entities have a multi-year program, beginning in 2002, to develop survey instruments for national surveys on people residing in residential care settings.  

The group discussed activities being undertaken by several agencies involved in these objectives.

A. AHRQ is using the Medical Expenditure Panel Survey (MEPS) and Consumer Assessment of Health Plans Study (CAHPS) survey.  MEPS assesses co-residing caregiving.  CAHPS is a kit of survey and report tools that provides reliable and valid information to help consumers and purchasers assess and choose among health plans.  
B. The Medicare Current Beneficiary Survey (MCBS) is used by Centers for Medicare and Medicaid Services (CMS) to assess Medicare beneficiaries needs. 
C. The National Center for Health Statistics (NCHS) is currently funding a redesign of their Home Health and Hospice Survey.  
D. The National Long Term Care Survey, which is administered periodically from 1984-1999, could be used to measure the population 65 and older and the types of residence in which they reside.  However, the 1999 caregiver questions can not be used in conjunction with the residence data due to a CAPI programming error. 
E. The Census Bureau also collects data on Group Quarters, i.e. the institutionalized, as well as residential care settings (e.g., Group Homes).  It was noted that a working group from Census, AHRQ, the Office of the Assistant Secretary for Planning and Evaluation (ASPE), and others from the Aging Forum Data Needs Working Group is addressing definitions and operations with this population.  Most federal national-level surveys (such as NHIS; MEPS; and CPS, the Current Population Survey) exclude the institutionalized population from their universe, yet different surveys operationalize this exclusion in different ways.  
F. The Interagency Forum on Aging Related Statistics Data Needs Working Group is comprised of members from several agencies, including AHRQ, ASPE, Census, CMS, NCHS, Social Security Administration (SSA), Veterans Administration (VA), and is currently compiling definitions and survey operations information of the institutionalized population in all major federal surveys.  In addition, NCHS and NIA are creating a place-type typology to classify various types of residential settings.  

Exploring additional requirements for reporting and analysis in current data sets (Action #3) was discussed.  These included Title V, CMS, the Administration on Developmental Disabilities (ADD), and individualized plans. 
 
A. Title V and application process: States should be required to report on nationally standardized performance measures relating to the number of children with disabilities in congregate care, the number of children with disabilities and their families being served by community/ family supports programs (including Medicaid waivers), and the numbers on waiting lists for such services.  In addition, the number of children with disabilities in specialized foster care, alternate families, and shared parenting arrangements should all be reported, as should the state activities in training, policies, and legislation regarding permanency planning, etc.
B. CMS:  Perform this reporting/analysis on state data in order to get some proxy measures for availability/accessibility/need/use of community support services.  Determine the Medicaid waiver data-numbers served and the numbers on waiting lists.  
C. Administration on Developmental Disabilities (ADD): Explore adding quantitative and qualitative outcome data to the data collected by ADD.  Creatively assess the existence and availability of data and the potential for enhancing data from the educational system.  
D. Other individualized plans: Determine the potential for collecting data from the Individualized Education Program (IEP), Individualized Transition Plan (ITP), or Individualized Family Services Plan (IFSP) to describe and quantify needs of individuals and families for community supports, services, living arrangements, etc. 

Partners  
Government
Congress 
Department of Education (DOE), Head Start, National Center for Education Statistics (NCES)
Department of Commerce (DOC)
Department of Health and Human Services (DHHS)
Administration on Aging (AOA)	
Administration on Developmental Disabilities (ADD)
Agency for Healthcare Research and Quality (AHRQ)
Centers for Disease Control and Prevention (CDC)
Centers for Medicare and Medicaid Services (CMS)
Health Resources and Services Administration (HRSA)
Maternal and Child Health Bureau (MCHB)
National Center for Health Statistics (NCHS)
Office of Disability Aging and Long Term Care
Interagency Subcommittee on Disability Statistics (ISDS)
Office of the Assistant Secretary for Planning and Evaluation (ASPE)
Office of the Commissioner of Social Security, Social Security Administration (SSA)
US Census Bureau
Veterans Administration (VA)

Non-government
American Association of Retired People (AARP)
American Disabled for Attendant Programs Today (ADAPT)
Association of Technology Act Projects (ATAPs)
Behavioral Risk Factor Surveillance System (BRFSS) State Coordinators 
Developmental Disability Councils (DDC)
Early Childhood Intervention Programs/ Individuals with Disabilities Education Act (IDEA)/National Early Childhood Technical Assistance Center
Faith-based partners, such as Faith in Action (FIA), a Robert Wood Johnson Foundation (RWJF) program, and other RWJF programs
Family Voices
Interagency Forum on Aging Related Statistics Data Needs Working Group 
National Council for Independent Living (NCIL) 
National Council on Disability (NCD)
National Governors Association (NGA)
National Independent Living Council (NILC)
The Arc 
Research institutions/ universities (e.g., University of Illinois, University of Minnesota)
Service provider groups such as those of physicians and other health care providers, community-based service providers, facility-services providers, and foster care and adoption agencies and providers


Paper on Emotional Support: People Need People

Sunny Roller, MA
Program Manager
University of Michigan Health System
Ann Arbor, Michigan

Healthy People 2010 Focus Area 6 Objectives

Objective 6.3:  Reduce the proportion of adults with disabilities who report feelings such as sadness, unhappiness, or depression that prevent them from being active.

Objective 6.5:  Increase the proportion of adults with disabilities reporting sufficient emotional support.

Objective 6.6:  Increase the proportion of adults with disabilities reporting satisfaction with life.


Colorado is an awe-inspiring, beautiful place: clustered mountain peaks, bright blue sunny skies, and rushing rocky streams below that softly sing to the beleaguered soul.  It is even more magnificent to me now, because its landscape, wildlife, and friends have embraced and nurtured me in a time of grave distress. 

As you may have noticed, I am beginning this presentation in a rather unusual way.  Id like to take a moment to share a recent, very personal, and semi-secret story with you.  I am doing this because I believe it helps illustrate the vital importance of our Healthy People 2010 objectives on emotional health, and the significant role you need to play in designing specific activities to make our national visions come to pass.  

Colorado is an awe-inspiring, beautiful place.  My younger sister, Amy Kay, is 48-years-old and looks 30.  Loyal, supportive, and extremely dependable, she teaches Sunday school, and works one-on-one with disabled children in the public schools.  After 9 years of full-time employment and relentless attendance at night school classes, she just earned her college degree.  Amy, a bit of a late bloomer, is single and lives with my 78-year-old mother.  Faithfully and readily she has been serving as Moms helping companion and very best friend for many years, especially since Dad died.  In mid-August, just a few weeks ago, Amy was suddenly diagnosed with inoperable colon and liver cancer.  During major surgery to provide for a colostomy, large malignant tumors were discovered throughout her organs.  Vanquished after the operation, the disheartened surgeon softly told us that his skill to remove the invasive tumors was futile.  With those words, Mom, who struggles herself with diabetes, macular degeneration, and lung disease, was ruthlessly shattered?breathlessly appalled, grief-stricken, heartbroken.  Its different when its your child, she shared with us, remembering too, when I, her eldest, was paralyzed by polio at the age of four.  Needless to say, my brother, sister and I have also been absolutely devastated.  Amy is the one we jumped on the beds with and the one we proudly applauded at her childhood shuffle-step-step tap dancing lessons.  She is the one who always took crabby old Dad shopping in his later years because we didnt have the time.

During the 2 weeks following Amys surgery, emotionally, our family was like a group of baby birds in a nest: clinging together, only able to peep in vulnerable bewilderment.  During Amys hospital stay, my brother dropped everything and flew up from Florida to be present and provide support: driving Mom to the church to pray, taking her to visit Amy at the hospital every day, and doing odd jobs around our seventy-year-old suburban Michigan homestead.  My sister in California did the same.  She cried with us, ran an exhausting number of errands, and made sure we were eating enough.  I played my part too, driving back and forth the hours distance from my home to Moms, providing emotional support, and helping to line up key resources and the assistance for Mom and Amy to meet their new needs during the months ahead.  

Once the initial crisis had passed, and Amy had returned home with enough community helpers in place, our sibling group disbanded and returned to our widely scattered homes to personally process what had just struck our small but close family.  Although it was hard, I reluctantly decided to keep my scheduled late summer vacation and flew to be with friends for ten days, 8, 000 feet up in the Colorado mountains.  Tearful from the whirlwind crisis, I was suddenly weary and more mystified than ever as my airplane soared west through two time zones.  How can this be? my mind drifted.  I will miss Amy so much?her help and dependable kindness have been so long with us.  How long do we have?  Where is the meaning for us embedded in this nasty turn of events?  How difficult and painful will this new journey be?  I identified so closely with my sister that I could feel the surgeons knife in my gut, sense her evil alien growths creeping into my lower torso.  How do we turn this around and make it a blessing? I asked myself.  Can a series of new life-sustaining miracles dominate what lies ahead?  Where is the goodness interwoven in all this horror?  My emotional health was ominously threatened as I plunged into unprecedented depths of grief, sadness, and fear.

Then . . . enter the great state of Colorado!  The great state of long-prevailing friendship!  As I was wheeled off the airplane arriving in Denver, my old friend Jane greeted me with her great big smile and expansive open arms.  We have been buddies for over 30 years and she knew that what I now needed was a time of enormous emotional support.  For the next 10 days, we talked about life and death and consolation until we fell asleep at night.  We went on walks with my wheelchair around accessible Rocky Mountain lakes.  We shopped with friends in happy little gift shops; we talked about supporting Mom and Amy and how to keep ourselves strong in the process.  We prayed for hope and for the vision to recognize and affirm the miracles that will lie ahead for our family and caring friends during the coming months.  We agreed that laughter is an important ally and that pain, sorrow, and fear all need to be embraced and managed.  My wonderful friend Jane, along with the comforting mountain peaks, warm early autumn sun, frisky elk, and coyotes, all worked as partners to strengthen and protect me emotionally during this merciful time of retreat, reflection, and recreation.  

As a person and a woman with a chronic disability, I, like you, face many distressing challenges in life that require great reserve and even greater social networks.  Emotional support is critical.  Although it comes in many shapes and forms, age-old religions as well as contemporary medical and psychosocial research remind us that first and foremost, people need people.  We know also, however, that the Centers for Disease Control and Prevention recently reported to the nation that Americans who have disabilities experience less emotional support, more depression and sadness, and a lower satisfaction with life than their nondisabled counterparts.  I was fortunate.  I had a friend to turn to.  Data tell us that people with disabilities are often less free to establish social connections and join supportive groups.  We are generally less connected to healthy social relationships and environments, including those based on our employment.  What are we going to do about this?  Chapter/Focus Area 6 of Healthy People 2010 forecasts that with the appropriate new programs, policies, and data collection, it is possible for people with disabilities to reverse these trends?with all of our help.
 
In well-disseminated hard copy print, Healthy People 2010 predicts that people with disabilities can and deserve to be VERY healthy emotionally.  Is it okay to be happy and busy if one hobbles around on crutches?  Yes.  Is it appropriate to feel secure and serene if one must use a wheelchair to get around town?  Yes.  Should a person who needs caregivers to eat and get dressed in the morning also be free and able to feel and express the healthy balance of deep-down full-bodied, anger, grief or sorrow during the course of the daybut then not get stuck in it?  Absolutely.  In times of distressing trivia or overwhelming tribulation, according to Chapter/Focus Area 6 of Healthy People 2010, it is possible and appropriate for people like me, who live with a disability, to achieve and maintain well-nourished emotional health, even in the worst of circumstances. 

We, as a nation, have set three objectives to address this vision.  They state that by 2010 a different proportion of adults with disabilities will 1) experience greater emotional support (target: up to 79%), 2) feel less sad or depressed (target: from 28% down to7%) and 3) become more satisfied with life (target: up to 96%).  These particularly challenging national health objectives are crucial, feasible, and achievable when those with a concern for people with disabilities take the time to identify and launch the action steps that are required to attain them.  Further, if Objective 6.5 (the achievement of greater emotional support) is embraced as the vanguard aspiration, the two subsequent objectives, 6.3 and 6.6, can, in turn, become more achievable.  Activities to generate programs, policies, and data regarding the provision of emotional support to and among people with disabilities will naturally facilitate lowering depression and raising satisfaction with life.  What do we do next?
      
Programs
After much thought, in place of coming up with a variety of brilliantly rare and exotic new ideas for us to discuss in our workgroups, I find myself reestablishing the old-fashioned simple idea that people need to be with people, and that physical and social environments need to be accessible and supportive if we are to decrease the sadness among us and increase satisfaction with life.  It is a message that cannot be repeated enough, because it is so fundamental to our nature as human beings.  Its such an old concept that it may have strangely grown into an exotic new one as we rush, rush through our high-tech daily lives of fast food, fast track jobs, and high-speed Internet.  

We all can feel starved these days for stable and unconditional love, slow food, and full attention and kindness.  I rediscovered in Colorado that hugs and walking and rolling in a wheelchair around mountain lakes with a smiley Labrador retriever at ones side are still extremely effective forms of emotional support.  

To promote social connectivity and positive emotional intimacy, we have agreed in Healthy People 2010 that we should intensify education, community access, and communication alternatives and personal assistance services including respite care for people with disabilities and their families.

Education - Continually developing powerful educational programs across the country to spotlight disability awareness is imperative.  Many people with disabilities are not fortunate enough to have a friend like Jane in Colorado.  If she had not educated herself and taken the time to get to know me years ago, to understand the complexities that accompany my disability, we would not be happily entwined today.  Likewise, if I had been unwilling to take the chance and the time to understand her and who she really is, a great support system would have been lost.  But I, too, had to be out there in society to even meet her.  My very presence among people is educational to many who see me, but structured educational programs can also be a key to more quickly improving understanding and emotional support among all of us.  When we experience and identify with each other through an educational encounter, more open and positive relationships can flourish, paving the way for improved life satisfaction and less depression among people who are isolated because of ignorance-induced fear.  

We can strengthen educational programming during the next 2 to 3years through the continued dissemination of information about what its like to live with a disability?through literature, sponsored classes, and the very influential motion picture and television media.  Our unique needs, characteristics, and challenges in the framework of our cultural diversity and commonalities with all other people can be featured.  Educational programs can be reinforced or built anew by our public schools, universities, Centers for Independent Living (CILs), disability-based organizations, churches, libraries, government public health and social service agencies, hospitals, and businesses.  I believe that those of you who are in this room are deeply involved with part of this network of possible facilitating organizations, and you know how to best address ways to permeate their programmatic planning agendas.  In the area of emotional health, I especially believe that our faith-based organizations (including churches, synagogues, and mosques) should be encouraged to increase their outreach and educational programming efforts such that they design special ministries and committees to elevate spiritual support and provide helping services for members with disabilities.  I hope there are members of the faith-based community here today or within calling distance.

Along with disability awareness, wide-reaching education addressing the need for reliable and affordable transportation, housing, and communication alternatives is currently imperative if we want to see continued change.  Education for the business and health care community should also be expanded to increase understanding about the need for improving quality personal assistance services for people with disabilities.  One night out in Colorado, I glibly joked with my friends, who said they kept forgetting I was handicapped, as they amicably helped me with my wheelchair.  Maybe Im not handicapped, you guys; Im just more complicated than your other friends!  We all laughed, sharing an unspoken intimacy.  Stereotypes are broken with exposure and education.  As this information is conveyed and understood, emotionally supportive relationships will grow, because preconceived ignorance-based barriers can and will be destroyed.  

Specifically, we as national disability leaders should facilitate:

More widespread distribution and reading of positive, emotionally supportive literature along with workshops in positive psychology, which teach that gratitude, hope, kindness, leadership, love, spirituality, and teamwork are our most important priorities.  The September 11, 2001 plane hijacking solidified these core cultural values for us.  Psychologists tell us: These sorts of character strengths are strongly associated with all sorts of well-being.  They transcend disability characteristics and are a common connection for all people in our American culture.  I believe that, when needed, the techniques to promote having and being a friend are skills that can be taught directly?in a class or by a counselor.  As a person with a disability, I also need to identify how others perceive me at first and then how to skillfully reach out as a friend to those who may need and want friendship from me.  Psychologist Christopher Peterson, purports too, that positive psychology can be taught as an intervention, and emotional strength can be increased by routines such as making lists of things youre grateful for and telling your spouse: I love you every day.1  These kinds of lessons lead to the provision of greater emotional support among all of us.  Why not provide them at colleges and community education programs within the framework of disability?

Increased numbers of accessible support groups with energized outreach to people with disabilities.  I recently was surprised to discover there are no support groups in the state of Michigan for people with spinal cord injury.  I know that my post-polio support group has been an invaluable anti-isolation source for me during the past 15 years.  When someone says to me, I have experienced the same thing, emotional support begins.  When I say to someone else, Let me help, I am contributing and feel more whole and connected.  Hospital-based peer support groups and health promotion programs focused on holistic wellness, such as Living Well with a Disability, can also serve as excellent sources of emotional support.  We need to finance and continue to generate this type of emotional health intervention.  I know of one Center for Independent Living that is initiating a capital campaign to expand its facilities, incorporating and expanding all of its current services, to turn itself into a wellness center for people with disabilities.  What a great idea!  CILs can become a major force to achieve the emotional support objectives of HP2010, Chapter/Focus Area 6. 

Community Access - As a person with a disability, in order to find and give emotional support, I need to be among peoplewhether on the Internet, out and about in my community, or in a beautiful and supportive home environment that is user- and visitor-friendly.  Community access is vital.  Simply stated, people need to be able get to each other, so our physical and social environments must be totally accommodating.  People with disabilities will benefit immensely from easy access to technology.  Cell phones, home personal computers, and environmental controls, for example, all need to be easy to obtain and use.  Transportation is absolutely critical.  With the help of Northwest Airlines personnel, I was able to fly west to be with friends this month.  Yet simple transportation for my Mom who cant see well, and now that Amy is no longer able to drive her, is still glaringly absent.  We have a large segment of our population that desperately needs safe, affordable, and friendly rides to the grocery store.  Community transportation services still need to become more accessible and affordable for people with disabilities.  We are not there yet, even though selected communities do have exemplary programs that should be showcased and emulated.  Many buildings, including homes and apartments in our communities are still not barrier-free and wheelchair accessible.  We need to strengthen our programs to continue these efforts.  Universal design will promote greater interaction among the nondisabled and everyone else, which will lead to greater connectivity, emotional support, hope, and satisfaction with life because options in the environment will mushroom.  Casually stated, we will be better able to get next to each other!

Personal Assistance Services and Respite Care - For many of us, Personal Assistance Services (PAS) are very important.  My mom, Amy, and I all need personal helpers now.  We need assistance with a variety of tasks from housecleaning to driving to changing bandages.  These relationships can themselves become a source of giving and receiving emotional as well as functional support.  Funded programs to heighten readily available and affordable access to these services for people with disabilities need to expand.  Mom and Amy cannot now spend 24 hours a day together without intermittent respite from each other and the difficulties they face.  They need to know there is someone who can help them with time out to renew strategies and activities if they are going to stay emotionally supported and healthy and not get depressed.  Why not encourage a variety of community partners including Centers for Independent Living, health care centers, faith-based organizations, and community colleges to develop PAS, respite care training, and service programs?

Policies
National, state, and local policies that facilitate the awarding of financial incentives and public acclaim to any organization presenting sanctioned disability-awareness educational programs and resultant anti-isolation initiatives should be established.  Is there a group that could set and publish educational standards for a disability-awareness curriculum and delivery methods?  Could this group also have as a major purpose to promote and generate educational programs and curricula across a variety of educational venues?  Our quest for community access is enhanced by the Americans with Disabilities Act to promote accommodation and the breaking of barriers in various realms.  It is also helpful that in the area of communication, President Bush is currently establishing a centralized Web site that will serve as a single-stop online site where people with disabilities, services providers, and advocacy organizations can access links to information about federal disability-related programs and services.  Perhaps this could become a cyberspace policy for all of the fifty states as well.  Finally, government and private health insurance policies need to include reimbursement for well-qualified and plentiful personal assistance and respite care services for people with disabilities. 

Data Collection
We need to gather and report information on best practices across the country to showcase stellar programs and policies already in place that are addressing issues of emotional support to eliminate depression and increase life satisfaction.  For example, I know of an excellent local transportation program that provides spontaneous door-to-door taxi service anywhere in the city for seniors and people with disabilities for a flat fee of $1.50 a ride.  They also provide at the same price scheduled van service 24 hours a day for individuals who use wheelchairs.  How do we collect data on programs like this across America?  What venues can be used to publish and adapt these models for our communities?  Also, other means of monitoring our progress in meeting these specific Healthy People 2010 objectives for emotional support, depression, and life satisfaction can occur as we strengthen the Behavioral Risk Factor Surveillance System for use in all fifty states, and the National Health Interview Survey supplemental questions.

People need people.  Healthy People 2010 guides us to become a nation of tough-minded optimists who can visualize emotionally healthy people with disabilities in moment-to-moment activities as they participate with other people where they livein every city, town, and countryside home; in every workplace and recreational place.  Mom, Amy, and I are on a new transitional journey with life and death that will require strong emotional support among ourselves and from others, to ward off depression and somehow maintain or even raise our ultimate satisfaction with our lives.  In our case, its a huge order, and we will need to draw upon all of the community resources that are available.  How many ignorance barriers will I have to break through in the process?  How many rides wont Mom be able to get?  Who will help us take care of Amy at home?  How will we afford it?  Besides us, there are a large number of Americans who have disabilities that would benefit from programs and policies stimulating greater emotional support to boost their overall happiness and satisfaction with life.  Together, we have the power, expertise, and influence to make that happen.  Lets now spend our time this weekend to get very specific, pragmatic, and action-oriented in order to make our conception for emotional health quickly become a reality in our country.  For my family and for 54 million people with disabilities across America, there is no time to waste.  

References
1. Seligman MEP. Authentic Happiness. New York: Free Press, 2002.


EMOTIONAL SUPPORT WORKGROUP RECOMMENDATIONS

Emotional Support  Policies and Programs ACTIONS

1.  Establish a coordinating committee to identify health resources addressing behavioral health of people with disabilities.

2.  Develop an educational campaign to address behavioral and emotional health needs, using HP2010 objectives 6.3, 6.5, and 6.6 as leverage.

3.  Identify model behavioral health programs that show effectiveness of interventions for people with disabilities and identify ways to increase access to those programs.

Discussion
Group discussion centered around three main questions: 1) What have we been doing?, 2) What do we need to be doing? , and 3) What can we do together?  

The consensus was that lack of emotional support and feelings of sadness, unhappiness, and/or depression among individuals with disabilities often results from isolation from the community: as examples, limited transportation options, limited physical access to buildings, and lack of understanding from the general public concerning the ability of people with disabilities to be productive.  From these broad topics, we narrowed the discussion down to three goals we felt were achievable and necessary to begin the process of addressing the emotional needs of people with disabilities.  Note: Because the terms mental health or mental illness often exclusively refer to issues surrounding individuals who have been diagnosed with mental illness as their primary disability (example: an individual who is diagnosed with bipolar disorderas manic-depressive), the group decided we needed to address this issue as behavioral health needs.  We believed felt this definition addresses covered not only the issues of people someone with a mental illness diagnosis and peoplebut also those individuals with other disabilities who felt isolated, lonely, or overwhelmed by their situations.  

The first goal we identified was to pursue an education campaign concerning Healthy People 2010 and behavioral health needs.  The group believed felt that not enough people, and especially peoplepeople with disabilities, were aware of the agenda and goals of HP2010.  Service providers (primary care physicians, Centers for Independent Living IL sstaff, case managers) do not usually think about emotional support and behavioral health issues for people with disabilities unless mental health issues are the root cause of their disability.  We concluded thatfelt an education campaign concerning HP2010, which included a discussion of the behavioral health needs of individuals with disabilities, was a good first step.

One way to do this is to develop a fact sheet for distribution.  Materials should include the goals of HP 2010 for people with disabilities and , as well as a list of behavioral health symptoms that health care providers should watch for to identify potential behavioral health needs amongin people with disabilities.  This information should also include the HP 2010 Web site address.  (All information developed should be available and disseminated in alternative formats.)  Another way to provide education is to conduct grass roots training for service providers about behavioral health, including signs to look for as indicators of emotional distress and inadequate emotional support, and appropriate resources to which to refer people.  A community education campaign can also reduce the stereotypes and stigmatizationtization of mental illness and behavioral health issues.  Identify speakers and presenters for conferences to bring issues of HP 2010 and behavioral health needs to professionals and consumers.  

A second goal is to aoincrease access to behavioral health programs.  Individuals with disabilities often have difficulty paying for mental health/behavioral health services because their insurance does not cover these services or they do not have insurance.  Actions that can help achieve this goal are to pursue legislation to increase access to behavioral health programs for people with disabilities (e.g., insurance parity for behavioral health services); assess state and federal programs that provide mental health services for people with disabilities for their ability to provide real accessservices; and identify effective behavioral health programs for people with disabilities to serve as models for the improvement of less effective programs and develop future programs. 

Finally, our third goal is to establish a federal interagency committee on behavioral health for people with disabilities.  There appear to be huge gaps in the flow of information between federal agencies and one agency often does not know what another is doing.  The workgroup concluded that felt there is a need for a mechanism to effectively share information.  Primary questions of concern included: A big question of concern is: How can information be effectively distributed at the local level?do we get the information to the local level  How can information be disseminated to, to the individuals involved in direct services?  Ways to achieve this goal are to hold a conference for federal agencies, sponsored by the Centers for Disease Control and Prevention (CDC) and the National Institute on Disability and Rehabilitation Research (NIDRR), to address behavioral health issues for people with disabilities.  We also suggest holding a National Academy for State Health Policy (NASHP)ASHPE--cosponsored conference to inform state agencies about issues of behavioral and emotional support for people with disabilities with the aim of establishing a committee at the state level for this goal.  Include at the HP 2010 Web site a section for best practices on emotional support for people with disabilities. 

Partners
Government
Department of Education (DOE)
National Institute of Disability and Rehabilitation Research (NIDDR) 
Department of Health and Human Services (DHHS)
Centers for Disease Control and Prevention (CDC) 

Non-government[??Is this the correct acronym? What is full name?]
Consortium for Citizens with Disabilities (CCD)
Division of Rehabilitation Psychology of the American Psychological Association (APA)
National Council on Independent Living (NCIL) 
National Federation of the Blind (NFB) 
National Academy for State Health Policy See above?________________(NASHPE  NASHP)  

Emotional Support  Data ACTIONS

1.  Include a psychometrically strong item (or items) on emotional support in both the National Health Interview Survey (NHIS) and Behavioral Risk Factor Surveillance System (BRFSS) as well as encouraging its use in the NOD/Harris survey and other surveys that include people with disabilities.

2.  Over-sample and make accommodations for respondents with disabilities in surveys measuring emotional needs and supports of people with disabilities.

3.  Fund methodological studies of the validity, sensitivity, and specificity of measures of depression and other concepts, and evaluate the effectiveness of the question item related to "receiving emotional support" currently used in several surveys.

Discussion
As is the case with most of the objectives in the Disability and Secondary Conditions Focus Area, the three objectives developed to measure the emotional status of people with disabilities are new to the Healthy People initiative.  To evaluate the data used to measure these objectives, our workgroup took an inventory of the available data systems, evaluated the variables and made suggestions for improvements for each of the measures.  A synopsis of those discussions follows.

Emotional problems that prevent a person from being active are monitored at the national level with data obtained from the NHIS and at the state level with data from the BRFSS.  In both surveys, the following two questions have been used to describe disability as a demographic descriptor as opposed to a set of health outcomes. 

Are you limited in any way in any activities because of physical, mental, or emotional problems? (Yes, No, Don't know/Not sure, Refused)

Do you now have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone? (Yes, No, Don't know/Not sure, Refused)

The activity limitation variable in the NHIS can be thought of as a composite measure that combines the responses to this question with affirmative responses to the six limitation questions preceding it in order to determine activity limitations.

Similar, but not identical questions regarding negative feelings that interfere with life activities are asked in the two surveys.

During the PAST 30 DAYS, how often did you feel  
... so sad that nothing could cheer you up?  
... nervous?  
... restless or fidgety?  
... hopeless?
... that everything was an effort?  
... worthless?  (All of the time, Most of the time, Some of the time, A little of the time, None of the time, Refused/Not ascertained/Don't know) - NHIS

During the past 30 days, for about how many days have you felt sad, blue, or depressed? ( __ __ = Number of days) - BRFSS

Other national surveys?National Health and Nutrition Examination Survey (NHANES) and the National Comorbidity Survey (NCS)?and smaller scale-surveys (e.g., World Health Organization Quality of Life Instruments  WHOQoL) have been fielded in recent years and can be useful in providing context for the data that have been chosen to measure this objective.

At the launch of Healthy People 2010, questions regarding emotional support were not available at the national level.  Therefore, baseline data for this objective were obtained from the ten states that collected data using the BRFSS Disability module.  In 2001, questions regarding emotional support were included in the NHIS disability supplement.  When these new data become available, the national figures will be replaced.  Data from the BRFSS will continue to be used to measure state progress.  The following are questions from the two surveys.

How often do you get the social and emotional support you need?  Would you say always, usually, sometimes, rarely, or never? - NHIS

How many close friends or relatives would help you with your emotional problems or feelings if you needed it? (3 or more, 2, 1, None, Don't know/Not sure, Refused) - BRFSS

Another national survey that collected similar information was the 2000 National Organization on Disability (NOD)/Harris Survey of Community Participation.

Questions regarding life satisfaction were likewise not available at the national level at the launch of HP2010.  Baseline data for this objective were also obtained from the ten states that collected data using the BRFSS Disability module.  In 2001, the BRFSS question was included in the NHIS disability supplement.  When these new data become available, the national figures will be replaced for this measure as well.  Data from the BRFSS will continue to be used to measure state progress.  The following is the question asked in both the NHIS and the BRFSS.

In general how satisfied are you with your life? Would you say you are a) very satisfied, b) satisfied, c) dissatisfied, or d) very dissatisfied? 

Another national survey that collected similar information was the 2000 National Organization on Disability (NOD)/Harris Survey of Americans with Disabilities.

We suggest funding methodological studies of the validity, sensitivity, and specificity of the measures of depression and other concepts in the NHIS and BRFSS.  Determine if a second question related to getting sufficient support is warranted.  Include the emotional support question in the NHIS core and not just the 2001 supplement, and include data on emotional support and disability with the NHIS Early Release Data.

Over-sample and make accommodations for respondents with disabilities.  Self-responses are required in both the NHIS and the BRFSS; therefore there are inherent environmental barriers that make it hard for some people with disabilities to participate.  After appropriately and thoroughly testing in a cognitive laboratory, possible solutions include using simple language and pictures in the tests and using alternate survey technologies to augment data collection such as Web and email surveys.

In the BRFSS, after modifying the wording to assure comparability between the state and national data, use emotional support questions.  Also, these questions should come closer to the intent of the Healthy People 2010 objective.  We suggest asking NOD and Harris Interactive to adopt the NHIS wording for emotional support questions when they next conduct their survey of people with disabilities.

Partners
Government
Department of Health and Human Services (DHHS) 
DHHS, Centers for Disease Control and Prevention (CDC) 
CDC, National Center on Birth Defects and Developmental Disabilities (NCBDDD) 
CDC, National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP)
CDC, National Center for Health Statistics (NCHS)
DoEd, NIDRR, Interagency Committee on Disability Research (ICDR) 
Office of Management and Budget (OMB) 

Non-government
American Association on Public Opinion Research (AAPOR)
National Association of Social Workers (NASW) 
National Organization on Disability (NOD)

Paper on Children with Disabilities and Healthy People 2010:  A Call to Action

Patricia M. Sullivan, Ph.D.
Center for the Study of Childrens Issues
Creighton University School of Medicine
Omaha, Nebraska

Healthy People 2010 Focus Area 6 Objectives

Objective 6.1:  Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify people with disabilities.

Objective 6.2:  Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.

Objective 6.7b:  Reduce to zero the number of children aged 17 years or younger living in congregate care facilities.  

Objective 6.9:  Increase the proportion of children and youth with disabilities who spend at least 80 percent of their time in regular education programs.

Objective 6.11:  Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed.

Objective 6.12:  Reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities.

Abstract

Children and youth with disabilities are included as a specific subpopulation in Healthy People 2010 for the first time since the inception of the national health promotion and disease prevention agenda in 1979.  Chapter/Focus Area 6 of the plan encompasses thirteen specific objectives that describe the vision of HP 2010 to promote the health of people with disabilities and eliminate health-related disparities between Americans with and without disabilities.  Six of these objectives include varying age groups of children and youth with disabilities as part of the disability target population.  

This paper was commissioned by the Healthy People 2010 Chapter 6 National Forum to delineate a blueprint for action to transpose the vision of HP 2010 into reality for children and youth with disabilities.  To this end, this paper presents a series of concrete recommendations for bridging vision into reality for each of the six objectives germane to children and youth with disabilities in terms of data, policy, and programs.  These objectives pertain to: surveillance data; depression; congregate care; inclusion in general education programs; assistive technology; and environmental barriers, including accessibility of services. 
Data:  Available data on children and youth with disabilities are scattered, varied in quality, and difficult to access and use.  Consequently there is a need for a public policy blueprint on the inclusion of children and youth with disabilities in databases compiled and maintained by federal and state agencies.  Data should be collected on children with disabilities from birth to 21 years.  Data are also needed to track the participation of children with disabilities at play, school, and in the community.  A standardized national measurement process for objectively assessing the accessibility of environments that serve children with disabilities, particularly schools, health care settings, private agencies, and the community in general, needs to be developed.
Policy:  A national public policy blueprint that addresses children with disabilities needs to be developed.  Children and youth with disabilities need to be included in public policy, practice, and research recommendations in the health care, mental health, violence, and child maltreatment domains.  Policies are also needed that allocate funds and resources to support permanency planning and family support for children with disabilities.  Legislation and public policy are needed to provide reimbursement for assistive devices through private insurance coverage as well as Medicaid.  
Programs:  Programs should develop coalitions established across existing agencies and groups to address the emotional health of children.  Children with disabilities should be included in school prevention and intervention programs.  Public awareness campaigns need to be developed to prepare professionals, families, and the general public for the increasing presence of children with disabilities in general education programs.  Programs should address matching the needs of the child to specific assistive technology devices and train the child, education professionals, and family members in their use with emphasis on increasing participation in community life. 
Action Agenda:  The action agenda focus points for each child-related objective synthesize the major recommendations compiled by the Disability and Secondary Conditions Focus Area 6 Vision for the Decade workgroups.  Additional recommendations are given to provide focus points for the HP2010 Disability Forum participants in the breakout sessions concerning children as they mold the data, program, and policy action agenda for the decade for children and youth with disabilities.

In every child who is born, under no matter what circumstances and of no matter what parents, the potentiality of the human race is born again, and in him (or her) too, and in each one of us, our terrific responsibility toward human life.  James Agee (1909-1955)

SURVEILLANCE DATA

6.1:  Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify people with disabilities.
The overwhelming majority of data-gathering and research that guides public policy on health care issues for people with disabilities has focused on individuals 15 years of age and older.  This neglect of children and youth with disabilities from birth through 14 years of age has resulted in a paucity of information about the disability epidemiology and health characteristics of this age group.  Given the necessity of data-driven objectives in the compilation of the public health agenda in HP2010, this dearth of data on children and youth with disabilities was a significant limitation to their inclusion in that project.  The resulting implications for improving their overall health status within the current decade are jarring.  Without surveillance data, we cannot hope to identify for children with disabilities the existing quality of life, disparities in health care with nondisabled children, and the component parts that are within our ability to address and enhance.  Besides not including children with disabilities in existing surveillance systems, this lack of data is also due to disparate definitions of disabilities among children and variability in targeted age groups.

Disability is a heterogeneous categorization, and various strategies for operationally defining disability status range from medical models of physical deficits to inclusion models of challenges and cultural differences.  These operational definitions adopted by researchers, medical providers, educators, the federal government, and people with disabilities have determined the data that are available at the present time regarding children with disabilities.  These data include the prevalence and incidence estimates that can be made.  Many groups collect data on disability status among children.  There are currently no mandates or resources for a comprehensive demographic study of disability status among children.  Consequently, existing data are best described as estimates, projections, and best guesses, and results vary as a function of the agency in the social ecology that is collecting the data, how disability status is defined, severity of disability coded, age range employed, and the need for disability-related services.   

Children and youth have an identity that transcends their specific or multiple disability status.  Disability is not a health outcome.  Rather, it is a demographic descriptor akin to ethnicity, gender, and socioeconomic status.  Disabilities are not commensurable and the heterogeneity of the demographic descriptor must be captured.  Among children this includes the childs stage of development and age at onset, as well as the type, severity, complexity, and chronicity of the disability.  The epidemiology of childhood disability differs markedly from that of adults.1  Children and adolescents are the fastest growing age cohort with disabilities compared to other age groups in the US.2  This is attributed to major new epidemics of obesity, asthma, Attention Deficit Hyperactivity Disorder (ADD/HD), Type II diabetes, and depression.  Children and adolescents also have differential disability trajectories and have fewer lasting disabilities than adults.  Thus, care must be taken not to simply transpose to children surveillance methodologies that are implemented with adults.  Different sentinel agencies and target data points will apply.  Importantly, the public will need to be educated to the concept of disability as a demographic variable rather than a health outcome.

In order to maintain a balance between the social, administrative, medical, and legal considerations involved in disability measurement, it is important to collect data that can be used to understand disability, develop public health policy, produce simple prevalence estimates and descriptive baseline statistics on the impact of disability.  
      
Action agenda focus points
1. The silence of institutions?including federal and state governments?in establishing a national public policy and research agenda addressing children and youth with disabilities is a major barrier to gathering surveillance data.  A national public policy blueprint addressing children with disabilities needs to be developed.  Children and youth with disabilities need to be included in public policy, practice, and research recommendations across the various spheres of life. 
2. The inability to link data from disability sources to other datasets hampers research efforts.  Federal, state and local education, health, social security, and justice departments have disability databases that can assist in the determination of prevalence rates of children and youth.  These local and federal agencies could assist in this determination by permitting data mergers between their disability datasets with health care, social service, and law enforcement databases to identify the number of disabled children within them.  
3. Data on children with disabilities have been tainted by inconsistent operational definitions, poorly defined heterogeneous populations with disabilities, and questionable validation procedures for determining disabilities.  This problem is compounded by the exclusion of less visible groups of children with disabilities including those in residential institutions for the mentally challenged, schools for the deaf, the homeless, and children of illegal aliens.  Definition standards of disabilities among children and youth need to be established that implement a common framework for understanding disability statistics.  A cross-walking strategy across disability databases should be implemented.  The International Classification of Functioning, Disability, and Health (ICF) encompasses a promising framework for this purpose to provide uniform language for describing functioning, health, and disability status including environmental factors. 

DEPRESSION
6.2:  Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.
Children with disabilities exhibit the full range of affective disorders.3  Higher rates of depression have been documented in children who have mental retardation,4 behavior disorders and learning disabilities,5 and developmental disorders6 than children without disabilities.  Extensive literature reviews on childhood and adolescent depression7,8 have identified cognitive (i.e., mental retardation and learning disabilities) and behavioral (i.e., emotional and behavior disorders) co-morbid conditions with diagnoses of depression.  Thus, there is a substantial research database to support this objective.

Children and youth with disabilities have higher rates of depression than do children without disabilities.  This Chapter/Focus Area 6 objective is based upon self-report data obtained from the parents of children and early adolescents with disabilities between the ages of 4 and 11 during the National Health Interview Survey (NHIS) in 1997.  The parents of 31% of the disabled children reported them as being unhappy, sad, or depressed in contrast to 17% of the parents of nondisabled children.  Although some data points in the sample were categorized as statistically unreliable, the data do support the notion that children with disabilities exhibit more depressive symptomatology than nondisabled peers.  It should be noted that the depression designation is based upon parental observation and judgment and is, accordingly, not a clinical diagnosis.  The target goal to reduce this baseline of 31% to 17% during the current decade is reasonable.  However, this will require the efforts of various agencies and groups across the social ecology including federal and state government agencies, professional organizations, schools, the faith community, advocacy agencies, parent groups, corporations, private nonprofit organizations, private and public insurance companies, and the media.

Interventions will need to target the environmental as well as individual dynamics of the depressive symptoms.  An essential environmental target for children with disabilities is the schools.  Children with disabilities are often socially isolated contributing to depression.  Children with disabilities are also frequent targets of bullying in the school settings.  Children enrolled in special education programs associated with visible disabilities (i.e., cerebral palsy, blindness, deafness, etc) are twice as likely to be bullied than children with disabilities not associated with visible physical conditions (i.e., learning disabilities) and some one-third of these children are regularly bullied at school with boys being bullied more than girls.9   These data are consistent with other research which has found children with special education needs twice as likely to be bullied than those in general class placements.10   School bullying is a contributing factor to feelings of unhappiness, sadness, and depression among children with disabilities and affects their ability to benefit from special education services.

Action agenda focus points
1. Inaugurate a national policy recognizing the universal need of families with children with disabilities for services that include family services, family-to-family support, and therapeutic services for the child in an integrated community setting. 
2. Build coalitions across existing agencies and groups to address depression among children.  Use as a model the Office of Special Education and Rehabilitative Services (OSERS) projects involving family, teachers, policy makers, and school administrators partnerships.
3. Enlist the cooperation of schools, including Early Intervention services during the preschool years, in data gathering.  Include teacher opinion on whether or not the child feels unhappy, sad, or depressed in the childs Individualized Education Program (IEP) and, if so, address it within the school system as a specific goal.  Report aggregate data to state departments of education for dissemination to the CDC to track baseline data and progress in reducing the prevalence rate over the decade.
4. Develop multimedia prevention materials targeting children with disabilities, their parents, and the professionals serving them on mental health needs and intervention resources.  An effectiveness evaluation program should be required as a component of the material development.

CONGREGATE CARE
6.7b: Reduce to zero the number of children aged 17 years or younger living in congregate care facilities.  
Congregate care facilities are defined as settings in which children with disabilities live in a group of four or more people with disabilities, in order to receive needed supports and services.  Accordingly, a wide range of children with disabilities may receive services in some type of congregate care.  This is the most ambitious of the objectives in HP2010 addressing children and youth with disabilities.  The notion of removing children from out-of-home care is a byproduct of the pervasive disenchantment with institutions for children that emerged in the late 1960s, due in large part to the deinstitutionalization movement and extensive child abuse and neglect within the institutions.  Since that time major federal and state initiatives have been undertaken to normalize the everyday lives of children who were or would have been provided for in institutions for the mentally retarded, mentally ill, and deaf and hard-of-hearing children and youth.  These initiatives took the form of new community-based service alternatives and of closing institutions as being by definition abusive because they did not constitute the least restrictive placement environment.  

Residential facilities including group homes, residential treatment centers, juvenile detention centers, runaway shelters, homeless shelters, and foster homes sometimes include four or more children and youth with disabilities, particularly learning disabilities, speech/language disabilities, and behavior and emotional disabilities, and thereby, meet the definition of congregate care facilities.  The mental health, education, family support and rehabilitation services required by these children and youth encumber a substantial share of health and education dollars.  These services are fragmented across many institutions including health, education, child welfare, and the juvenile justice system.11 

Action agenda focus points
1.	The federal Health Care Financing Administration (HCFA) and, as appropriate, other US Department of Health and Human Services (DHHS) offices, divisions, and programs need to assume a proactive role by establishing policies for allocating funds and resources to support permanency planning and family support for children with disabilities.  The goal of these federal agency collaborations should be to eliminate disparities in commitment of states and governmental policies to permanency planning.  
2.	Policies and reimbursement programs should recognize and serve family caregivers who provide for children and youth with disabilities in their homes.  Provide families with an array of housing, services, and supports that permit them to use programs supporting family and community living.  
3.	Pursue the zero goal in congregate care for those children with viable options for permanency with their family in the home community.  Provide the family with the necessary monetary and service resources to adequately care for the child.
4.	Identify those groups of children and youth with disabilities who will require congregate care.  Explore serving them in group-home families with professional parents who are paid a sufficient salary for both parents to remain in the home and care for the children.  Pay them a sufficient salary per year to attract and retain quality people; provide home, utilities, groceries, clothing, and other necessities for them and the children; and assign no more than five children to the home.  This is less costly than group-home or residential placement; it keeps the child in his or her home community, and allows him/her to access community resources.  
5.	Track progress toward meeting targeted goals through individual records in Medicaid, Developmental Disabilities (DD) data sets and State Title V annual reports and, wherever possible, require that the ICF be included on forms for each child.  Permit researchers access to this database.  

INCLUSION
6.8:  Increase the proportion of children and youth with disabilities who spend at least 80% of their time in regular education programs.
This objective targets the placement of children in general education and does not encompass inclusion in other aspects of school life.  The target population is those children with disabilities defined under the Individuals with Disabilities Education Act (IDEA) and its thirteen eligibility categories. 

The Office of Special Education Programs (OSEP) within the US Department of Education (DOE) collects the most nationally representative data on children in special education.  Some 5.3 million children and youth with disabilities received special education services in the US during the 1997-98 school year.12  These children represented some 12.2% of all children enrolled in public schools and included children between the ages of 6 and 17 attending primary and secondary schools.  Children with behavioral/emotional problems, mental retardation, and learning disabilities taken together accounted for 70% of children receiving special education services, and speech and language impairments comprised an additional one-fifth of these children with disabilities.  Since the 1976-77 school year, the first year for which data on children served in special education under federal statutes were reported by OSEP, the number of children served has increased by almost 45%, or 1.6 million children.  This increase is attributed to the growth in the number of children classified with specific learning disabilities who account for more than half of all children with disabilities served, and slightly more than 5% of all children enrolled in school between the ages of 6 and 17.13

Although this Focus Area 6 objective is essentially already mandated by IDEA, it is attainable only if there are appropriate supports and services from outside agencies, particularly health care and social service agencies.  There is more involved in attaining the objective than placement of the disabled child in a general education setting for 80% of his or her school day.  It requires coordination of needed services within the school environment and across other systems.  For example, there are also attitudinal challenges to address among educators and administrations that may believe that self-contained classrooms are the best educational placements for students with disabilities.
      
Action agenda focus points
1. Initiate public awareness campaigns to prepare professionals, families and the general public for the increasing presence of children with disabilities in general education programs.
2. There is great variation among states in how funds are linked to specific students.  Some link funds to programs resulting in more reimbursement to segregated classroom placement than general classroom placement thereby resulting in monetary disincentives to inclusion.  Explore alternate ways to link funds to individual students and to programs that support special education costs in both inclusive and segregated programs.  Special education placements should be based on student needs, not financial incentives.
3. Form partnerships with government and policy groups (i.e., Interagency Coordinating Councils for IDEA, the Social Security Administration, and the National Conference of State Legislators); education (i.e., National Education Association, National Associations of Elementary and Secondary Principals, and the Council for Exceptional Children); health service professionals (i.e., American Academy of Pediatrics, American Psychological Association, and the American Public Health Association); advocacy and parent groups (i.e., National Council on Disability, The Arc, Parent-Teachers Associations, and parent-to-parent organizations); community services (i.e., public health agencies and the juvenile justice system); and corporate entities (such as Microsoft, pharmaceutical companies, public relations firms, and the National Ad Council).
4. Conduct research on the comparative benefits of segregated and inclusive placements.  Identify the most efficacious methods of evaluation and instruction, which vary as a function of placement.  Schools should be accountable for delivery of services and student outcomes. 

ASSISTIVE TECHNOLOGY
6.11: Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed.
Assistive technology is defined as any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities (Assistive Technology Act of 1998, PL 105-393).  It is not restricted to special equipment used only by people with disabilities.  Importantly, assistive technology is an adjunct to other types of support services typically received by children with disabilities.  There is a broad array of assistive devices for children and youth with disabilities that vary as a function of specific disabilities.14 (See reference #14 for an extensive review of these devices).  

Action agenda focus points
1. Obtain population based data on children from birth to 21 years on their access and usage of assistive devices.  Develop and implement appropriate measures to assess the relationship between access and usage.
2. Advocate for legislation and public policy to provide for reimbursement for assistive devices through third party payors.
3. Provide incentives to industry to invest in research and development of assistive devices for use by children and youth with disabilities.
4. Provide training and access to technology for students and their educational team members (i.e., teachers, teacher aides, and related service providers) in order to maximize the use of the technology with the student.  Focus on technology that might benefit all students, not just those with disabilities.
5. Focus on policies and programs that address matching the needs of the child to the technology and training the child, education professionals, and family members in its use. The mere provision of assistive devices to children with disabilities and their families is not sufficient. There must be coordination across settings in which the child will use the assistive technology.  Policies and programs should match the needs of the child with the assistive device and the childs family and teachers should receive training on its use across settings.  

ENVIRONMENTAL BARRIERS
6.12:  Reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities.
Despite the passage of the Americans with Disabilities Act of 1990 (Public Law 101-336), people with disabilities continue to encounter architectural, physical, and communication barriers that block or impede their access to office buildings, stores, theaters, restaurants, hotels, and private homes.15  Surveys among adults with disabilities indicate that some 24% of disabled adults report a lack of access to public buildings being problematic for them.15  No data are currently available on accessibility problems for children and youth with disabilities from birth through 14 years of age.  Once again, children and youth younger than 15 are neither included nor counted in national surveys that gather information on disability status and accessibility issues.  Among adults with disabilities, the removal of existing barriers as well as barrier-free design of new buildings is a significant focus of disability legislation and activism.  

Ironically, although federal law requires public school systems to provide education programs for children with disabilities, an investigation by the Government Accounting Office (GAO) in 1995 found geographic variability in accessible schools and classrooms.  Specifically, schools in central and inner cities are less accessible than schools in suburban districts.  This is most probably related to funding constraints and illustrates the need for accessibility parity for disabled children in inner cities as well as other rural and urban school districts.  Accessibility is a human issue, not a geographic consequence.

Although the architecture profession has been slow to incorporate accessibility features for people with disabilities in their building and home designs, recent concepts including adaptable design and universal design have emerged and are being championed by the disability community.  Adaptable design incorporates fundamental accessibility features (i.e., ramped entrance, wide doors, and spacious bathrooms) and leaves space for the addition of other accessible features at a later date.  Universal design includes the standard accessibility features and adds universal items including lowered touch-activated light switches, raised electrical outlets, height-adjustable shelves and rods in closets, lever operated doorknobs, and storage space within reach of people of any height.  These features are also useful and desirable with elderly people and children with and without disabilities.  

Action agenda focus points
1. Develop a standardized national measurement process for objectively assessing the accessibility of environments that serve children with disabilities, particularly schools, health care settings, private agencies, and the community in general.
2. Apply public health methodologies to identify and review existing environmental barriers data for children and youth with disabilities in order to target interventions with the greatest potential impact.
3. Survey research methods need to access information from parents and caregivers across the gamut of disability categories including cognitive, physical, health related, and behavioral disabilities.  Data will need to include the heterogeneity of children with disabilities and respective accessibility barriers within health care, education, and community agencies.
4. Establish a central agency within federal and state governments specifically charged with addressing the removal of environmental barriers for children and youth with disabilities from birth through 21 years of age.  
5. Advocate for universal design of new schools and facilities, which will likely serve children and youth with disabilities.

CONCLUSIONS
There is a tide in the affairs of men
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.
On such a full sea are we now afloat,
And we must take the current when it serves
Or lose our ventures.  -William Shakespeare (15641616) Julius Caesar (IV, iii)-
These, then, are suggested focus points to guide participants in the Children breakout sessions as they mold the data, program, and policy action agenda for the decade for children and youth with disabilities from birth through 21 years of age.  We stand at the threshold of setting the public policy and program agenda that will increase their quality of life and eliminate health-related disparities with nondisabled children.  In so doing, we have the unique opportunity to capitalize on the expanded paradigms of public health, medicine, and education to collaborate in the effort.  With the six child-related objectives in Focus Area 6, we have the preliminary guideposts to chart the course for the necessary action agenda addressing surveillance data, depression, congregate care, inclusion in general education programs, assistive technology, and environmental barriers including accessibility of services.  Children with disabilities must be included in surveillance data gathering or we will not succeed in identifying their existing quality of life, the disparities in health care compared to nondisabled children, and the policies and programs that need to be implemented.  We must gather these data on children from birth through 21 years of age.   The mental health needs of children with disabilities can no longer be ignored and neglected.  Children and youth with disabilities are best served within their own families and home community.  They need to have the choice to spend as much time in the general classroom as possible.  Children with disabilities should have access to assistive devices as adjuncts to the services they receive.  Reimbursement should be possible through private insurance agencies and Medicaid.  Incentives must be provided to industry to invest in research and development of assistive devices for the use of children with disabilities.  We must advocate and inaugurate the removal of existing barriers as well as barrier-free design of new buildings so that they will be accessible to children with disabilities.  If we expect to expand these six objectives to other domains in the compilation of HP2020 we must take the current when it serves. We must elaborate programs and policies that need to be undertaken and the appropriate administrative and logistical support needed to implement them.  Children and youth with disabilities cannot wait until 2020 to attain parity with nondisabled children in our nations health care agenda.  The time to act is now and we must not lose our ventures.

References
1.  Perrin, J.M. Health services research for children with disabilities. Milbank Q. 2002;80(2),303-324.   
2.  LaPlante MP, Kaye HS, eds. Trends in disability and their causes: Proceedings of the fourth national disability statistics and policy forum. Washington, D.C.: US Department of Education; 1998.  
3.  Benavidez DA, Matson JL. Assessment of Depression in Mentally Retarded Adolescents. Res Dev Disabil. 1993;14:179-188.
4.  Kobe FH, Hammer D. Parenting stress and depression in children with mental retardation and developmental disabilities. Res Dev Disabil. 1994;15(3):209-221.
5.  Stanley PD, Dai Y, Nolan RF. Differences in depression and self-esteem reported by learning disabled and behavior disordered middle school students. J Adolesc. 1997;20:219-222.
6.  Harden A, Sahl R. Psychopathology in children and adolescents with developmental disorders. Res Dev Disabil. 1997;18(5):369-382.
7.  Birhaher B, Ryan N, Williamson DE, Brent DA, Kaufman J. Childhood and adolescent depression: A review of the past 10 years, Part II. J Am Acad Child Adolesc Psychiatry. 1996;35(12):1575-1583.
8.  Birhaher B, Ryan N, Williamson DE, et al. Childhood and adolescent depression: A review of the past 10 years, Part I. J Am Acad Child Adolesc Psychiatry. 1996;35(11):1427-1439.
9.  Dawkins JL. Bullying, physical disability and the pediatric patient. Dev Med Child Neurol. 1996;38:603-612.
10.  Olweus D. Bullying at school: What we know and what we can do. Cambridge, Mass: Blackwell;1993:384 437. 
11.  US Department of Health and Human Services. Report of the Surgeon General's Conference on Children's Mental Health: A National Action Agenda. Washington, DC: Department of Health and Human Services; 2000.
12.  Office of Special Education Programs.  To assure the free appropriate public education of all children with disabilities: Twenty-first annual report to Congress on the implementation of the Individuals with Disabilities Education Act, 1999. Washington, DC: Office of Special Education Programs (OSEP), US Department of Education, April 10, 2000: p. II-44. 
13.  Lewit EM, Baker LS. Children in special education. The Future of Children. 1996;6(1): 139-151.  
14.  Hasselbring TD, Williams Glaser CH. Use of computer technology to help students with special needs. The Future of Children. 2000;10(2):102-122.
15.  Kaye HS. Disability watch: The status of people with disabilities in the United States. Volcano, Calif: Volcano Press; 1997.  


CHILDREN AND YOUTH WORKGROUP RECOMMENDATIONS

Children and Youth  Policies and Programs ACTIONS

1.  Create a workgroup to coordinate at the state and national level monitoring and implementation across all HP2010 objectives for children and youth with chronic conditions/disabilities. 

2.  Develop and/or provide information, training, and support to families of children and youth with disabilities, including anticipatory guidance, caregiving, and family balance, coordinating these efforts with already-existing activities.

3.  Create and/or identify models that states can use to integrate children and youth with disabilities into government-funded programs related to school health, physical activity, recreation, social participation, nutrition, and other public health activities.

Discussion
We believe it is essential to ground all activities in values in order to offer a broad vision for action.  The workgroup believes it is imperative that all people?children, youth, their families, our professional partners, and others?feel they are achieving or can help to achieve the recommendations set forth in this report.  This is especially important because there will be limited resources to address a number of critical issues and this will require all stakeholders to identify an active role in implementation.  Knowing there is a bigger vision will encourage individual participation, interest, and commitment.  Note: the words and definitions used will strongly impact who identifies with the initiatives and activities (e.g., disability, special needs, chronic illness, etc.).

We distinguished a list of values we felt were important to guide our work:
1. Programs for children and youth should have equal weight with those provided for adults.
2. All initiatives should be both person- and family-centered.
3. Issues should represent a cross-disability perspective.
4. Initiatives must be child- and youth-oriented.
5. Self-determination is a central value throughout.  
6. Discussion should cross the age span: infants through adolescents. 
7. Attention should be given to the transition period between child and adult.
8. Attend to a range of functionality and participation in the environment. 
9. Partnerships are vital for successful design and implementation.
10. Initiatives should be oriented toward health promotion.
11. It is imperative to utilize a strengths-based model. 
12. Programs should aim for results and be outcomes-driven. 
13. Initiatives should consider inclusive/integrated actions (versus specialized programs).
14. Initiatives must be inclusive of race, gender, and sexual orientation.

In order to identify effective action steps to meet HP2010 initiatives targeted for children, it was useful to think through some of the areas that are problematic or underdeveloped, which we thought of as gaps.  We then readily translated these into action areas.  Because this is a potentially large area, it seemed more constructive to focus on only some gaps, although certainly more than these exist.  

1. There is a lack of coordination between health and education at all levels.
2. Agencies, organizations, and stakeholders that facilitate transition dont collaborate, and there continues to be a lack of coordination among federally funded programs impacting children with disabilities (i.e., Medicaid, Early Intervention, Special Education, Title V, etc.).
3. There is a need for training on disability in regular education.
4. Early intervention services need greater emphasis on transition and extension to older ages.
5. Family life and sexuality education is almost nonexistent for youth with disabilities.
6. The availability of resources and information on assistive technology is limited.  For example, there is limited coverage for children above age 3; there are insurance limits on prosthetic devices and other types of assistive technology (AT); support for funding is often tied to education only, as opposed to all life activities.
7. Children with disabilities are often not included in physical education and playground activities.
8. Issues that impact adults with disabilities need to be integrated into youth transition so that individuals have the tools and resources necessary when they arrive at adulthood.
9. There are several aspects of HP2010 that address issues for children and youth with disabilities, however they are not necessarily coordinated.  Examples include the Maternal and Child Health Bureau (MCHB) HP2010 Express.
10. Currently, families are required to pay a significant amount of out-of-pocket expenses for medical, durable medical and assistive technology devices. 
11. Families continue to lack the necessary supports and information to fully participate in employment and community life, and children and youth with disabilities have reduced opportunities for both informal and formal social and recreational participation. 

Further background on actions
After we developed these action items, we found we still needed to collapse and distill the ideas so that we captured the interests and will of our various participants.  Therefore, a short discussion follows each recommended action step. 

Action #1
Creating a workgroup to coordinate individuals who monitor and implement HP2010 objectives for children and youth with disabilities and chronic health conditions can track crosscutting issues and the achievement of the objectives.  There are also other initiatives in HP2010 addressing similar needs, for instance, objectives and indicators identified by the Maternal and Child Health Bureau (HP 2010 Express) to address issues for children with special health care needs.  When possible, programs addressing all children should integrate children and youth with disabilities and chronic health issues.  There also needs to be consistent focus on ensuring a lifespan approach (from early childhood through adulthood) to all HP2010 objectives.

Action #2
Include language in federal grant guidance that requires states to report/describe how they address access to communications, information (hard copy and Web), and programs in compliance with ADA and Section 508.  Accessibility to information, services, and programs includes providing information via Web sites in compliance with 508 and W3C and "Bobby" standards; providing information in alternative formats (large print, Braille, audio); providing signage; and ensuring physical access to clinics, buildings, and programs; and providing other accessible features that ease service inclusion.  Programs receiving federal dollars should report and describe how they are addressing mandated access.  Currently, there is a lack of a standard policy or reporting mechanism in grant guidance from federal agencies to assure compliance with existing mandates.

Action #3
Families are primary providers of care for their children.  They oversee and are the links to children's care in other settings.  Families are their children's first and best advocates and teachers.  Many others play important roles at various times and in various settings, however families' relationships (and changing roles) typically extend throughout children's lives.  Family caregiving organizations should be a part of the supporting network. 

Many children/youth with disabilities are left out of informal and formal recreation, leisure, health education, health promotion, and risk reduction efforts.  If HP2010 objectives that relate to inclusion in regular education, and decreasing the number of children and youth that are saddened or unhappy are to have impact, social participation and activities that promote positive interaction with others and increased self-esteem must take place.  If HP2010 objectives that relate to full access to health and wellness programs and elimination of environmental barriers to participation are to be achieved, existing risk reduction and health promotion initiatives for the general population must serve as the foundation for action. 

Partners
Government 
Department of Education (DOE)
Office of Special Education and Rehabilitative Services (OSERS) 
National Center for Education Statistics (NCES)
Department of Health and Human Services (DHHS)
Centers for Disease Control and Prevention (CDC)
Maternal and Child Health Bureau (MCHB)
National Institute of Mental Health (NIMH)
National Center on Physical Activity and Disability (NCPAD)
Department of Labor (DOL)  
Department of Transportation (DOT)
Office of the Commissioner of Social Security
Social Security Administration (SSA)

Non-government
Administration on Developmental Disabilities (ADD)
Adult disability organizations such as: 
American Association for People with Disabilities (AAPD)
National Council on Independent Living (NCIL), and 
Through the Looking Glass
American Academy of Family Practice (AAFP)
American Academy of Pediatrics (AAP) 
American Association for Retired People (Grandparents Section)  (AARP)
Association of Maternal and Child Health Programs (AMCHP)
Council for Exceptional Children (CEC)
Disability and Business Technical Assistance Centers (DBTACs)
Family Voices
National Family Caregiver Association (NFCA)
National Therapeutic Recreation Society (NTRS)
National Youth Leadership Network (NYLN) 
Parent Training and Information Centers (PTIs)

Children and Youth  Data ACTIONS

1.  Review all Healthy People 2010 objectives to identify those relevant to children with disabilities, addressing issues of screener questions and age cut-offs.

2.  Clarify and resolve issues around best screeners for children across age groups, using a consistent approach to age cohort, especially those related to transition issues.

3.  Ensure that professionals beyond the health area, including educators, social workers, community organizations, and human service providers focusing on children, are included in subsequent HP2010 activities.

Discussion
The group identified a number of important methodological issues that need to be addressed to ensure that the HP 2010 objectives are met for children and youth with disabilities.  We also identified substantive areas, addressed throughout the HP 2010 document, that were particularly important for children with disabilities.  

The question of age cut-offs to be used in research on all HP 2010 objectives was discussed.  The underlying question here is at what age individuals with disabilities should be considered appropriate candidates for self-report.  The group concluded that the cut-off should be at age 11.  It was also believed that in some circumstances, different instruments and even a different definition of disability might be appropriate for different age groups.  We believed the upper limit of children should be age 22, when special education entitlement ends.  We also believed, however, that data sets ought to be refined enough to distinguish between 18- to 22-year-old children in school versus children who have left school with others in their age cohort.  One should be able to highlight data on children who have left school early and are frequently underserved by systems in general.  Because they are outside of systems, they may be missed by many studies and it would be useful to know what is happening to them.  A related issue is that there is no way to meaningfully track inclusion of youth older than 18 years old who remain in school (since that is a conceptual contradiction in terms).  DANS (Data Analysis System) should break out data for groups in age cohorts that are consistent with health data.  One possibility for a breakout of age is at 6-11, 12-18, and 19-22.

Much of our discussion concerned appropriate disability screeners for children and youth with disabilities.  We concluded that both current usage and best practice should be taken into consideration, but the latter should be our predominant concern.  It was noted that in some cases researchers could transition from one screener to another that was preferable to use?or in wider use, or both?by using a split or combined approach for some specified transitional period.  The group endorsed use of the Foundation for Accountability (FACCT) screener for children.  We believed it important that the interrelationship among screeners be studied.  We also believed it to be key that more extensive research be conducted about the optimal screener for adolescents, although the Youth Quality of Life-Disability Screener (YQOL-DS) (Topolski, Edwards and Patrick, 2002) screener seems promising.  The underlying aim of using nested screeners was to promote a developmental, lifespan approach to disability.

The group emphasized the importance of research on and support of adaptive/alternative research strategies that would promote inclusion of children and youth with cognitive and communication impairments.  Accommodation of children who are blind or deaf/hard of hearing in administration of the Youth Risk Behavior Survey (YRBS) was believed to be particularly critical.  Aside from children needing accommodation, children in special education are often excluded from the YRBS as it is currently applied.

The group identified areas of research aside from health that are relevant to achievement or monitoring of the HP 2010 objectives and sought to promote consistent use of health-based screeners in these areas.  Education and labor were particularly noted.  We encourage contact with the National Center for Education Statistics (NCES).

We discussed research screeners as the basis for program eligibility in order to promote utility of administrative data for tracking achievement of objectives in particular subpopulations, and to permit evaluation of programs in terms of their achievement of HP 2010 objectives.  It was acknowledged that programs might have narrower eligibility criteria than the population that would be identified by research screeners (e.g., Social security insurance, SSI). The notion of nested criteria, which could be tracked back to screeners, was raised as a means to address this.  

Finally, the group identified a list of substantive topics where it is particularly important that data be collected on children and youth with disabilities.  In each case, this would either require incorporating screeners into ongoing data collection and/or the development of new research strategies and definition of additional variables (e.g., respite).  These topics were: violence (here the issue was the need to include a youth screener in the YRBS and ensure inclusion of kids in special education in the study); oral health and access to oral health services; obesity and physical activity; mental health and access to mental health services; and family supports, including but not limited to respite and care coordination.

Partners
Government
Department of Education (DOE)
Office of Special Education and Rehabilitative Services (OSERS)
National Center for Education Statistics (NCES) 
Department of Health and Human Services (DHHS)
Centers for Disease Control and Prevention (CDC)
Youth Risk Behavior Survey (YRBS) group
National Health Interview Survey (NHIS) group
Disability and Health (DHB) group 
Maternal and Child Health Bureau (MCHB)

Non-government
Foundation for Accountability (FACCT)
Forum Participants

Myron (Mike) Adams 
Medical Epidemiologist
CDC/NCBDDD
4770 Buford Hwy NE, Mail Stop F-34
Atlanta, GA  30341-3724  
Phone: 770/488-7154, Fax: 770/488-7156
Email: mja1@cdc.gov

Deborah Allen  
Boston University School of Public Health
Department of MCH
Health & Disability Working Group
374 Congress Street, Suite 502
Boston, MA  02210  
Phone: 617/426-4447 x33, Fax: 617/426-4547
Email: dallen@bu.edu

Barbara Altman
Special Assistant for Disability Statistics
NCHS, OAEHP
6525 Belcrest Road, Rm 730
Hyattsville, MD  20782  
Phone: 301/458-4654, Fax: 301/458-4038
Email: baltman@cdc.gov

Betsy Anderson 
Director
Family Voices PIC Project
Federation for Children with Special Needs
1135 Tremont Street, Suite 420
Boston, MA  02120  
Phone: 617/236-7210, Fax: 617/572-2094
Email: betsyand@fcsn.org

Elena M. Andresen 
Saint Louis University
3545 Lafayette Avenue, Suite 300
St. Louis, MO  63104  
Phone: 314/977-8130
Fax: 314/977-3234
Email: andresen@slu.edu

Brenda Bercegeay 
US Department of Education 
Strategic Accountability Service 
FB 6, Room6W246 
Mail Stop 0600 
Washington, DC 20202 
Phone: 202/401-3518, Fax: 202/260-7216 
Email: brenda.bercegeay@ed.gov

Jerome Bickenbach
Professor
Queen's University
Department of Philosophy
Kingston, ON  K7L 3N6  
Canada
Phone: 613/533-2182, Fax: 613/533-6545
Email: bickenba@post.queensu.ca

Ronald Blankenbaker
President
American Association on Health & Disability
960 E. Third Street, Suite 100
Chattanooga, TN  37403  
Phone: 423/778-6024, Fax: 423/778-3672
Email: blankerg@erlanger.org

Meg Booth, Policy Analyst
Association of Maternal & Child Health Programs
1220 19th St., NW Suite 801
Washington, DC  20036  
Phone: 202/775-0436, Fax: 202/775-0436
Email: mbooth@amchp.org

Yvonne M. Bradshaw 
University of Arkansas for Medical Sciences
2001 Pershing Circle, Suite 300
N. Little Rock, AR 72114
Phone: 501/682-9904, Fax: 501/628-9991
Email: BradshawYvonneM@UAMS.EDU

Edward Brann
CDC/NCBDDD/DHDD
1600 Clifton Road N.E., MS F-35
Atlanta, GA 30333
Phone: 404/498-3038, Fax: 404/498-3050
Email: eab1@cdc.gov

C.A. Brooks
Craig Hospital
3425 S. Clarkson Street
Englewood, CO  80110  
Phone: 303/789-8304, Fax: 303/789-8441
Email: cabrooks@craighospital.org

Quanza Brooks
CDC, Office of Women's Health
1600 Clifton Road N.E., MS D-51
Atlanta, GA  30333  
Phone: 404/639-4625, Fax: 404/639-7331
Email: qab4@cdc.gov

Cheryl Bushnell 
Director
Division for Special Health Needs
250 Washington Street
Boston, MA  02108  
Phone: 617/624-5959, Fax: 617/624-5990
Email: cheryl.bushnell@state.ma.us

Anthony Cahill
Center for Development & Disability
2300 Menaul Blvd NE
Albuquerque, NM  87107-1815  
Phone: 505/272-6251, Fax: 505/272-5280
Email: bgallego@unm.edu

Vincent Campbell 
Health Scientist
CDC/NCBDDD
1600 Clifton Road, MS F-35
Atlanta, GA  30333
Phone: 404/498-3012, Fax: 404/498-3050 
Email: vbc6@cec.gov 

Joseph Canose
Director
Christopher and Dana Reeve Paralysis Resource Center
636 Morris Turnpike, Suite #3A
Short Hills, NJ  7078  
Phone: 973/467-8270, Fax: 973/467-9845
Email: jcanose@crpf.org

Jos F. Cordero  
Director, NCBDDD/CDC
4770 Buford Highway N.E.,  MS F34
Atlanta, GA  30341-3724
Phone: 770/488-7150, Fax: 770/488-7156
Email: jfc1@cdc.gov

Jane Correia
Environmental Specialist III
Bureau of Environmental Epidemiology
4052 Bald Cypress Way, Bin #A08
Tallahassee, FL  32399-1712  
Phone: 850/245-4444 x2198, Fax: 850/922-8473
Email: Jane_Correia@doh.state.fl.us

Lynne Cory  
U.S. Disabled Athletes Fund
Blaze Sports
2071 Cantrell Lane
Watkinsville, GA  30677
Phone: 770/725-2583, Fax: 770/850-8199
Email: lynneC95@aol.com

Wendy Coster
Boston University - Sargent College
635 Commonwealth Avenue
Boston, MA  02215  
Phone: 617/353-7518, Fax: 617/353-2926
Email: wjcoster@bu.edu

Nancy Crain, Physician Assistant
Baptist Health System
900 Beach Blvd.
Jacksonville Beach, FL  32250  
Phone: 904/249-0335, Cell: 904/382-8516
Fax: 904/249-0042

John E. Crews  
Health Scientist
Disability and Health
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
1600 Clifton Road, MS F-35
Atlanta, GA 30333
Phone: 404/498-3013, Fax: 404/498-3050
Email: jcrews@cdc.gov

Kathy Cunningham
State Nutritionist Special Health Needs-Chairperson Folic Acid Council
Massachusetts Department of Public Health
250 Washington Street
Boston, MA  02108  
Phone: 617/624-5442, Fax: 617/624-5990
Email: Kathy.Cunningham@state.ma.us

Juliana Cyril 
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
1600 Clifton Road, MS F-35
Atlanta, GA 30333
Phone: 404/498-3014, Fax: 404/498-3050
Email: jcyril@cdc.gov

Kay Degarmo
Administrator
Prevention of Disabilties Policy Council
133A, CDD
100 Hawkins Drive
Iowa City, IA  52242  
Phone: 319/353-7050, Fax: 319/356-8284
Email: kay-degarmo@uiowa.edu

Charles E. Drum 
Director
Oregon Office on Disability and Health 
Oregon Institute on Disability & Development
Oregon Health & Science University, P.O. Box 574
Portland, OR  97207-0574  
Phone: 503/494-8047, Fax: 503/494-6868
Email: drumc@ohsu.edu

Helen Dulock
Nurse Consultant, Children with Special Needs
Division of Public Health
2 Peachtree Street NW, Room 11-227
Atlanta, GA  30303  
Phone:404/657-4857, Fax: 404/657-2763
Email: hdulock@dhr.state.ga.us

Richard Duncan  
Coordinator of Training 
The Center for Universal Design, College of Design
50 Pullen Road, Brooks Hall, Room 104
North Carolina State University
Campus Box 8613
Raleigh, NC  27695-8613  
Phone: 919/515-8557, Fax: 919/515-7330
Email: rc_duncan@ncsu.edu

Alexandra Enders  
Rural Institute on Diabilities
University of Montana
Missoula, MT  59812  
Phone: 406/243-2655, Fax: 406/243-2349
Email: enders@ruralinstitute.umt.edu

Patti Ephraim  
Project Director
Limb Loss Research and Statistics Program
Center for Injury Research and Policy
Johns Hopkins University Bloomberg School of Public Health
624 N. Broadway, Room 500
Baltimore, MD  21205
Phone: 410/614-8885, Fax: 410/614-2797
Email: pephraim@jhsph.edu

Irene Forsman 
Nurse Consultant
DHHS/HRSA/MCHB/DSCSHN
5600 Fishers Lane, Room 18A18
Rockville, MD  20857  
Phone: 301/443-9023, Fax: 301/443-0832
Email: iforsman@hrsa.gov

William Frey
Westat
1650 Research Blvd.
Rockville, MD  20850  
Phone: 301/610-5198, Fax: 301/251-8289
Email: williamfrey@westat.com

Glenn Fujiura
Associate Professor and Director
Institute on Disability and Human Development
The University of Illinois at Chicago
1640 West Roosevelt Road, MC 626
Chicago, IL  60608-6904  
Phone: 312/413-1977, Fax: 312/413-4078
Email: gfujiura@uic.edu

Jane Gay  
Director
Iowa Program for Assistive Technology, Iowa COMPASS
Center for Disabilities and Development
University of Iowa
100 Hawkins Drive
Iowa City, IA  52242-1011  
Phone: 319/356-4463, Fax: 319/356-1343
Email: jane-gay@uiowa.edu

Margaret Giannini
Director
Office on Disability
200 Independence Avenue SW, Suite 622-E
Washington, DC  20201  
Phone: 202/205-1016
Email: margaret.giannini@hhs.gov

Angela Gibson 
Genetics and Disabilities Specialist
Genetic Services Section Washington State Department of Health
20435  72nd Avenue South, Suite 200, K17-8
Kent, WA  98032
Phone: 253/395-6744, Fax:253/395-6737
Email: angela.gibson@doh.wa.gov

David B. Gray 
Associate Professor of Neurology and Associate Professor of Occupational Therapy
Washington University School of Medicine
Program in Occupational Therapy
4444 Forest Park
Campus Box 8505
St. Louis, MO  63108  
Phone: 314/286-1658, Fax: 314/286-1601
Email: grayda@msnotes.wustl.edu 
http://enablemob.wustl.edu

Susan Gray
Health Promotion Specialist
New Mexico Department of Health
Office of Disability and Health, PO Box 26110
Santa Fe, NM  87502-6110  
Phone: 505/827-2976, Fax: 505/827-1606
Email: susang@doh.state.nm.us

Adriane K. Griffen
Director, Public Health Programs
Spina Bifida Association of America
4590 MacArthur Blvd. NW, Suite 250
Washington, DC  20007  
Phone: 202/944-3285, Fax: 202/944-3295
Email: agriffen@sbaa.org

Patti Hackett 
Co-Director
Healthy & Ready to Work National Center
Academy for Educational Development
3151 NW, 44th Avenue, #143
Ocala, FL 34482  
Phone: 352/207-6808
Email: pattihackett@hrtw.org

Andrea Haenlin Mott
Cornell University
107 ILR Extension Building
Ithaca, NY  14853-3901  
Phone: 607/255-8348, Fax: 607/255-2763
Email: ah45@cornell.edu

Kristofer Hagglund 
Associate Dean for Health Policy
University of Missouri at Columbia
School of Health Professions
504 Lewis Hall
Columbia, MO  65211  
Phone: 573/884-7050, Fax: 573/884-8000
Email: hagglundk@health.missouri.edu

Ellen Harrington-Kane
Senior Director 
Medical Rehabilitation Services
Easter Seals, Inc.
230 West Monroe St, Suite 1800
Chicago, IL  60606  
Phone: 312/551-1792, Fax: 312/726-8623
Email: ellen.harrington@easter-seals.org

Kelly Headley
Wyoming Services for Independent Living
190 Custer Street
Lander, WY  82520  
Phone: 307/332-4889, Fax: 307/332-2491
Email: kellyheadley@yahoo.com

Bryna Helfer 
Transportation Services Advisor
Federal Transit Administration
400 7th street SW, Room 9315
Washington, DC
Phone: 202/366-1663, Fax: 202/366-7951
Email: bryna.helfer@fta.dot.gov

Gerry Hendershot  
Consultant on Disability & Health Statistics and Senior Research Associate
National Organization on Disability
4437 Wells Parkway
University Park, MD  20782  
Phone: 301/927-1120, Fax: 301/927-1120
Email: ghendershot@earthlink.net

David W. Hollar,  Postdoctoral Researcher 
SARDI Program/RRTC on Drugs and Disability
Department of Community Health
School of Medicine
Wright State University, P.O. Box 927
Dayton, OH  45401-0927
Phone: 937/775-1473, Fax: 937/775-1495
Email: david.hollar@wright.edu 

Sharon Holleran  
Assistant Professor of Clinical Psychiatry 
LSUHSC Department of Psychiatry 
1542 Tulane Avenue, Suite 235L 
New Orleans, LA 70112 
Phone: 504/680-9640, Fax: 504/599-1419
Email: SHolle@LSUHSC.EDU

Holly Hollingsworth 
Washington University
Program in Occupational Therapy
4444 Forest Park Avenue, CB 8505
St. Louis, MO  63108  
Phone: 314/286-1630, Fax: 314/286-1601
Email: hollingsworthh@msnotes.wustl.edu

John Hough
Health Scientist
CDC/NCBDDD/ Diability and Health
4770 Buford Highway NE, MS F-35
Atlanta, GA  30341  
Phone: 770/488-7830, Fax: 770/488-7075
Email: jph7@cdc.gov

Christopher Howard
Fort Clark Middle School
501 SW 75th Street, # B9
Gainesville, FL  32607  
Phone: 352/332-6961


David Howard  
University of Florida 
Dept. of Rehabilitation Counseling
PO Box 100175
Gainesville, FL  32610  
Phone, work: 352/265-0745, Phone, home: 352/332-6961
Fax: 352/265-0744
Email: djhoward7@yahoo.com  

Elizabeth Jackson
Statistician
National Center on Health Statistics
3311 Toledo Road, Room 6320
Hyattsville, MD 20182
Phone: 301/458-4288, Fax: 301/458-4036
Email: emjackson@cdc.gov

George Jesien
Executive Director
Assocation of University Centers on Disability
8630 Fenton Street, Suite 410
Silver Spring, MD  20910  
Phone: 301/588-8252, Fax: 301/588-2842
Email: gjesien@aucd.org

Edna Johnson
United States Department of Education
330 C Street SW, MES
Washington, DC  
Phone: 202/205-9320, Fax: 202/260-0723
Email: edna.Johnson@ed.gov

Cyndi Jones 
Director
The Center for an Accessible Society
2980 Beech Street
San Diego, CA  92102  
Phone: 619/232-2727 x111, Fax: 619/234-3155
Email: cjones@accessiblesociety.org


Gwyn C. Jones
Senior Research Associate
National Rehabilitation Hospital
Center for Health and Disability Research
1016 16th St., NW, Suite 400
Washington, DC  20036-5750  
Phone: 202/466-1916, Fax: 202/466-1911
Email: Gwyn.C.Jones@MedStar.net

LaVerne Jones  
Epidemiologist
District of Columbia, Department of Health
Bureau of Epidemiology and Health Risk Assessment
Division of Disability Surveillance and Intervention
825 North Capitol Street, NE, Third Floor
Washington, DC  20002  
Phone: 202/442-9146, Fax: 202/442-4796
Email: laverne.jones@dc.gov

Troy Justesen
Deputy Executive Director 
President's Commission on Excellence in Special Education
330 C Street SW
Washington, DC  20202
Phone: 202/205-9053

June Isaacson Kailes 
Disability Policy Consultant and Associate Director
Center for Disability Issues and the Health Profession 
Western University of Health Sciences
6201 Ocean Front Walk, Suite 2
Playa Del Rey, CA  90293-7556  
Phone: 310/821-7080, Fax: 310/827-0269
Email: jik@pacbell.net || www.jik.com

David W. Keer
Program Specialist 
Cochair, Interagency Subcommittee on Disability Statistics 
National Institute on Disability and Rehabilitation Research 
400 Maryland Avenue, SW
Washington, DC  20202-2572  
Phone: 202/205-5633, Fax: 202/205-8515
Email: david.keer@ed.gov

Kathleen Kelly
Executive Director
Family Caregiver Alliance/National Center on Caregiving
690 Market St., Suite 600
San Francisco, CA  94104  
Phone: 415/434-3388, Fax: 415/434-3508
Email: kkelly@caregiver.org

Hanna Kim 
Senior Public Health Epidemiologist
Rhode Island Department of Health
Division of Family Health
3 Capitol Hill, Rm 302
Providence, RI  02908-5097  
Phone: 401/222-4607, Fax: 401/222-1442
Email: hannak@doh.state.ri.us

Susan Kinne
Research Scientist
Center for DIsability Policy and Research
146 N Canal Street #313
Seattle, WA  98103  
Phone: 206/685-4769, Fax: 206/616-3135
Email: susaki@u.washington.edu

Cathy Kluttz-Hile 
Division of Public Health
1928 Mail Service Center
1330 St. Mary's Street
Raleigh, NC  27699-1928  
Phone: 919/715-3904, Fax: 919/733-2997
Email: cathy.kluttz@ncmail.net

Gloria Krahn  
Oregon Health and Science University
P.O. Box 574
Portland, OR  97236
Phone: 503/494-8364, Fax: 503/494-6868
Email: krahng@ohsu.edu


Rene Langlois
Senior Survey Manager
Participation and Activity Limitation Survey
Statistics Canada
7-C2 Jean Talon Building
Ottawa, ON  K1A 0T6  
	Canada
Phone: 613/951-0878, Fax: 613/951-4378
Email: renee.langlois@statcan.ca

Linda Lattimore
Acting Team Leader
Division of Human Development and Disability
Disability and Health Team
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
4770 Buford Highway, MS F35
Atlanta, GA  30341  
Phone: 404/498-3016, Fax: 404/498-3050
Email: lhl4@cdc.gov

Linda M. LoCasale
Director of Operations
Christopher and Dana Reeve Paralysis Resource Center
636 Morris Turnpike  Suite #3A
Short Hills, NJ  07078  
Phone: 973/467-8270 x 207, Fax: 973/467-9845
Email: llocasale@crpf.org

Donald J. Lollar 
Senior Research Scientist
CDC/NCBDDD/DHDD
1600 Clifton Road NE, F-35
Atlanta, GA  30333  
Phone: 404/498-3041, Fax: 404/498-3050

Ethan S. Long 
Project Director
Association of University Centers on Disabilities
8630 Fenton Street, Suite 410
Silver Spring, MD  20910  
Phone: 301/588-8252, Fax: 301/588-2842
Email: elong@aucd.org


Larry Lorenzo  
Office of Disability & Health/NM DOH
700 Dooley
Alamogordo, NM  88310  
Phone: 505/434-9758, Cell phone: 505/980-2286
Email: reyna@tularosa.net

Karen Luken
NC Office on Disability & Health
CB 8185, FPG UNC-CH
Chapel Hill, NC  27599-8185  
Phone: 919/966-0881, Fax: 919/966-0862
Email: kluken@email.unc.edu

Henry Maingi
Policy Analyst
Association of Maternal and Child Health Programs
1220 19th Street NW, Suite 801
Washington, DC  20036  
Phone: 202/775-0436, Fax: 202/775-0061
Email: hmaingi@amchp.org

Suzanne McDermott 
Project Director
University of South Carolina 
School of Medicine
Department of Family and Preventive Medicine
3209 Colonial Drive
Columbia, SC 29208 
Phone: 803/434-2556, Fax: 803/434-7529
Email: suzanne.mcdermott@palmettohealth.org

Sharon Milberger
Developmental Disabilities Institute
4809 Woodward Avenue, Suite 268
Detroit, MI  48202  
Phone: 313/577-7980, Fax: 313/577-3770
Email: smilberg@math.wayne.edu


Beth Mineo Mollica  
University of Delaware, A.I. duPont Hospital for Children
1600 Rockland Road
Wilmington, DE  19803  
Phone: 302/651-6790, Fax: 302/651-6793
Email: mineo@asel.udel.edu

Suzanne Mintz 
President/Co-Founder
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD  20895-3944  
Phone: 301/942-6430, Fax: 301/942-2302
Email: suzanne@nfcacares.org

Monika Mitra  
Senior Research Analyst
MA Department of Public Health
250 Washington Street, 5th Floor
Boston, MA 02108 
Phone: 617/624-5592
Email: monika.mitra@state.ma.us

Sharon Moore
Public Health Analyst
CDC/NCBDDD/ DH
4770 Buford Highway NE, F35
Atlanta, GA  30341  
Phone: 404/498-3017, Fax: 404/498-3050
Email: sjh6@cdc.gov

Dario Morgan  
Persona Health Services
2800 Milan Court, Suite 127
Birmingham, AL  35211
Phone: 205/943-6586, Fax: 205/943-6589
Email: deomorgan@hotmail.com

Dorothy (Dot) Nary
Research and Training Center on Independent Living
1000 Sunnyside Avenue, Room 4089 Dole Center
Lawrence, KS  66045  
Phone: 785/864-4095, Fax: 785/864-5063
Email: dotn@ku.edu

Wendy Nehring 
Acting Associate Dean for Educational Services and Professor
Southern Illinois University Edwardsville School of Nursing
Alumni Hall, Room 2331
Campus Box 1066
Edwardsville, IL  62026-1066  
Phone: 618/650-3972, Fax: 618/650-3854
Email: wnehrin@siue.edu

Vanessa Nehus  
Partners for Inclusive Communities
2001 Pershing Circle, Suite 300
North Little Rock, AR  72114
Phone: 501/682-9900, Fax: 501/682-9991
Email: nehusvanessar@uams.edu

Els Nieuwenhuijsen-Eldersveld 
University of Michigan
Dept of Phys. Med. & Rehab
1500 E. Medical Center Drive, MPB D 4118
Ann Arbor, MI 48109-0718
Phone: 734/936-7031, Fax: 734/936-7048
Email: elsrn@umich.edu

Carol Novak
National Council on Disability
10735 Tavistock Drive
Tampa, FL  33626  
Phone: 813/792-1989, Fax: 813/792-0920
Email: carol23@tampabay.rr.com

Donald L. Patrick
Professor
University of Washington
1959 NE Pacific, Box 357660
Seattle, WA  98195-7660  
Phone: 206/616-2981, Fax: 206/543-3964
Email: donald@u.washington.edu

Leslie Plooster
National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD  20814  
Phone: 301/718-8444, Fax: 301/652-7711
Email: lesplooster.nac@erols.com

Patricia Puckett
Statewide Independent Living Council of Georgia
1431-C McLendon Drive
Decatur, GA  30033  
Phone: 770/270-6860, Fax: 770/270-5957
Email: silcga@mindspring.com

John Reiss  
Chief, Division of Policy and Program Affairs
Institute for Child Health Policy
5700 SW 34th Street, Suite 323
Gainesville, FL  32605  
Phone: 352/392-5904 x224, Fax: 352/392-8822
Email: jgr@ichp.edu

Barth Riley  
Res. Asst. Professor
Department of Disability & Human Development
University of Illinois at Chicago
1640 W. Roosevelt M/C 626
University of Illinois-Chicago
Chicago, IL  60608  
Phone: 312/355-4054, Fax: 312/355-4058
Email: barthr@uic.edu

Judi Rogers
Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA  94710-2204  
Phone: 510/848-1112 x111, Fax: 510/848-4445
Email: judi_rogers@lookingglass.org

Allison (Sunny) Roller  
Program Manager
University of Michigan Health System
Physical Medicine and Rehabitation
D4114 Medical Professional Building
Ann Arbor, MI  48109-0718  
Phone: 734/936-9474, Fax: 734/763-0574
Email: elsol@umich.edu

Paddy Rossbach 
President and C.E.O.
Amputee Coalition of America
900 E. Hill Avenue, Suite 285
Knoxville, TN  37915  
Phone: 860/435-8892, Fax: 860/435-6606
Email: prossbach@amputee-coalition.org

Marcia Roth 
Program Manager 
North Carolina Office on Disability & Health 
Division of Public Health 
1928 Mail Service Center 
Raleigh, NC 27699-1928 
Phone: 919/715-2505, Fax: 919/733-2997 
Email: marcia.roth@ncmail.net

Andrea Sattinger 
Project Editor
The Sattinger Group
Health Care Communication
101-A The Hollow
Chapel Hill, NC  27561  
Phone: 919/932-7200, Fax: 919/960-0062
Email: asattinger@nc.rr.com

Marjorie Scaffa
University of South Alabama
Department of Occupational Therapy
Mobile, AL  36604  
Phone: 251/434-3939, Fax: 251/434-3934
Email: mscaffa@jaguar1.usouthal.edu


Julie Schaefer  
Disability Advocate, Social Worker
Indiana Department of Health
2 N. Meridian Street
Indianapolis, IN  46203  
Phone: 800/246-8909, Fax: 317/233-7494
Email:  No email at this time

Chrisann Schiro-Geist
Professor and Director
Disability Research Institute
University of Illinois at Urbana-Champaign
1207 S. Oak Street
Room 159 Rehabilitation Education Center
Champaign, IL  61820  
Phone: 217/265-0279, Fax: 217/265-0358
Email: chrisann@uiuc.edu

Lee Schulz
Executive Director
IndependenceFirst
600 West Virginia Street, 4th Floor
Milwaukee, WI  53204-1516  
Phone: 414/291-7520, Fax: 414/291-7525
Email: lee@independencefirst.org

Douglas Schwentor  
Rehabilitation Specialist
Education and Rehabilitation Services
6785 Gettysburg Drive, P.O. Box 273
Hudsonville, MI  49426  
Phone: 616/669-3833, Fax: 616/669-3833
Email: dougschwentor@msn.com

Raymond Seltser
Dean Emeritus
U. of Pittsburgh GSPH
4701 Willard Avenue
The Irene, Apt 1714
Chevy Chase, MD  20815  
Phone: 301/652-3332, Fax: 301/652-4760
Email: rseltser@msn.com

Jennifer Sheehy 
Special Assistant 
Office of Special Education and Rehabilitation Services
Dept. of Education
330 C Street SW, MES 3018
Washington, DC 20202
Phone: 202/205-8939, Fax: 202/260-7527
Email: jennifer.sheehy@ed.gov

Rune Simeonsson
University of North Carolina, CB#8185
Frank Porter Graham Child Development Center
Chapel Hill, NC  27599-8185  
Phone: 919/966-6634, Fax: 919/966-0862
Email: simeonsr@mail.fpg.unc.edu

Lisa Sinclair
Health-Science Policy Analyst
CDC/NCBDDD
4770 Buford Highway, F-35
Atlanta, GA  30341  
Phone: 404/498-3019, Fax: 404/498-3050
Email: lvs4@cdc.gov

Joseph B. Smith  
Senior Project Officer
CDC/NCBDDD/DHDD
1600 Clifton Road, F-35
Atlanta, GA  30333  
Phone: 404/498-3021, Fax: 404/498-3050
Email: jos4@cdc.gov

Matlyn Starks
Director
Minorities with Disabilities Advocacy Center
Vivienne S. Thomson Independent Living Center
3313 Washington Street
Jamaica Plain, MA  02130  
Phone: 617/522-9840, Fax: 617/522-9839
Email: mdstark112@aol.com


Thomas Stripling
Director of Research
Paralyzed Veterans of America
801-18th St. NW
Washington, DC  20006  
Phone: 202/416-7668, Fax: 202/416-7641
Email: Toms@PVA.org

Monika Suchowierska 
Research and Training Center on Independent Living
1000 Sunnyside Avenue
Room 4089 Dole Center
Lawrence, KS  66045  
Phone:785/864-4095, Fax: 785/864-5063
Email: monikas@ku.edu

Patricia M. Sullivan  
Professor of Neurology and Psychology
Creighton University School of Medicine
Center for the Study of Childrens Issues
11111 Mill Valley Road
Omaha, NE  68154  
Phone: 402/399-0560 x14, Fax: 402/399-0884
Email: tsullivan@creighton.edu

Ronda C. Talley 
Rosalynn Carter Institute for Human Development 
Georgia Southwestern State University
800 Wheatley Street
Americus, GA  31709  
Phone: 229/928-1234, Fax: 229/931-2663
Email: talleyrc@rci.gsw.edu

JoAnn Thierry
Behavioral Scientist
CDC/NCBDDD
4770 Buford Highway NE, F-35
Atlanta, GA  30341  
Phone: 404/498-3022, Fax: 404/498-3050
Email: jxt4@cdc.gov


Steven Tingus
Director 
NIDRR Office of Special Education and Rehabilitative Services
U.S. Department of Education 
Mary E. Switzer Memorial Building 
330 C Street SW, Room 3060 
Washington, DC 20202-2572 
Phone: 202/260-5179, Fax: 202/205-8997 
TTY: 202/205-4475 
E-Mail: Steven.Tingus@ed.gov 

Susannah Tomczak  
Project Manager
New Jersey Division of Disability Services
222 South Warren Street, PO Box 700
Trenton, NJ  08625-0700  
Phone: 609/292-7800
Email:  stomczak@hotmail.com

Tari Topolski
University of Washington
Department of Health Services
146 N. Canal Street Suite 313
Seattle, WA  98103  
Phone: 206/685-7259, Fax: 206/616-3135
Email: topolski@u.washington.edu

Meg Ann Traci
Project Director
The University of Montana Rural Institute
52 Corbin Hall
Missoula, MT  59812  
Phone: 406/243-4956, Fax: 406/243-2349
Email: matraci@selway.umt.edu

Kimberley A. Turner  
Program Manager
District of Columbia Department of Health
Bureau of Epidemiology and Health Risk Assessment
Division of Disability Surveillance and Intervention
825 North Capitol Street NE, Third Floor
Washington, DC  20002  
Phone: 202/442-9151, Fax: 202/442-4796
Email: kimberley.turner@dc.gov

Janet Valluzzi  
Service fellow
Agency for Healthcare Research and Quality
2101 E. Jefferson Street, Suite 500
Rockville, MD  20852  
Phone: 301/594-9201, Fax: 301/594-2166
Email: jvalluzz@ahrq.gov

Marian Vessels
ADA Information Center 
(Mid-Atlantic DBTAC)
451 Hangerford Drive, Suite 607
Rockville, MD  20850  
Phone: 301/217-0124 v/tty,  Fax: 301/217-0754
Email: mvessels@transcen.org

Lesa Walker  
Medical Director of the CSHCN Division
Children with Special Health Care Needs (CSHCN) Division
Texas Department of Health
1100 W. 49th Street
Austin, TX  78756-3179  
Phone: 512/458-7111 x2567, Fax: 512/458-7238
Email: Lesa.Walker@tdh.state.tx.us

Karen Werner   
University of Alabama
Health Promotion and Education
1330  16th Avenue South
Birmingham, AL  35205
Phone: 205/918-0904
Email: kaw161@hotmail.com

Nancy Wewiorski  
Center for Psychiatric Rehabilitation
Boston University
940 Commonwealth Avenue, West
Boston, MA  02215  
Phone: 617/353-3549, Fax: 317/353-7700
Email: wewiorsk@bu.edu


Glen W. White  
Associate Professor and Director
Research and Training Center on Independent Living
1000 Sunnyside Avenue
Room 4089 Dole Center
Lawrence, KS  66045-7555
Phone: 785/864-4095, Fax: 785/864-5063
Email: glen@ku.edu

Norman White  
Benefits Specialist, Working Healthy Program
Economic and Employment Support Services
1901 Delaware Street, PO Box 924
Lawrence, KS  66044-0590  
Phone: 785/832-3716, Fax: 785/843-0291
Email: LNBW@srskansas.org

Gale Whiteneck 
Craig Hospital
3425 S. Clarkson Street
Englewood, CO  80110  
Phone: 303/789-8204, Fax: 303/789-8441
Email: gale@craighospital.org

Deborah L. Wilkerson  
Chief Research & Education Officer
CARF ? The Rehabilitation Accreditation Commission
4891 E. Grant Road
Tucson, AZ  85712  
Phone: 520/325-1044, Fax: 520/318-1129
Email: dwilkerson@carf.org

Ann M. Wilson  
Director, NJ Coalition for Prevention of Developmental Disabilities
The Arc of New Jersey
985 Livingston Avenue
North Brunswick, NJ  08902
Phone: 732/246-2525, Fax: 732/214-1834
Email: awilson@arcnj.org

Mary Helen Witten
Project Officer
CDC/NCBDDD/DHDD/DH
1600 Clifton Road, F-35
Atlanta, GA  30333
Phone: 404/498-3023, Fax: 404/498-3050
Email: muw4@cdc.gov

Lynda D. Woodruff  
NGCSU-Project Partnership
Physical Therapy Department
c/o 925 Turtle Bend Lane
College Park, GA  30349
Phone: 706/864-1492, Fax: 706/864-1490
Email: lwoodruff@ngcsu.edu

Kiyoshi Yamaki   
Project Coordinator
Department of Disability and Human Development College of Applied Health Sciences
University of Illinois at Chicago
1640 West Roosevelt Road
Chicago, IL  60608
Phone: 312/413-7860, Fax: 312/413-4098
Email: kiyoshiy@uic.edu

Colette Zyrkowski  
Special Advisor to the Deputy, Office of the Director
CDC, Epidemiology Program Office
1600 Clifton Road NE, MS C08
Atlanta, GA  30333  
Phone: 404/639-4779, Fax: 404/639-4088
Email: coz1@cdc.gov


Vision for the Decade Symposium
Atlanta, Georgia, December, 2000








OPENING REMARKS
Vision for the Decade Symposium, 2000

Donald. J. Lollar, Ed.D.
US Department of Health and Human Services
Centers for Disease Control and Prevention
National Center on Birth Defects and Development Disabilities
Office of the Director

Thank you for comingknowing holidays are near, and much work is upon you all.  I must also thank David Keer and Lisa Sinclair for co-leading the chapter and this meeting, as well as Larry Burt, Gloria Dixon and Jennifer Nun for facilitating this meeting.  And a thank you goes to Jim Morrill, with Courtesy Associates, who produced this meeting.  Finally, I want to thank Ray Seltser, without whom the substance of the background material would be substantially weaker.  His commitment to Healthy People through the years has kept disability issues before government officials when they didnt want to look at them.  

The Healthy People project is an ambitious activity.  From humble beginnings over 20 years ago, it has survived and flourished across four government administrations so far, with bipartisan support.  The 467 objectives in the 28 chapters of Healthy People 2010 represent the work of thousands of people both within and outside government.

This is the first time that people with disabilities have been given a substantial place in the agenda.  This effort began almost 4 years ago and has included more than 150 individuals from 75 organizations generating close to 200 potential objectives.  These final objectives in Chapter 6 represent the best combination of disability needs and data viability.

The objectives look to be worthy of effort.  They suggest that the purview of public health has expanded to include what the World Health Organization has called a state of complete well-being?physical, social and mental, and not merely the absence of disease.  This implies that there is a mandate to address factors that fall outside the usual understanding of health, such as housing, transportation, education, and adequate resources for living.  You see in these objectives issues of children and adults, people with disabilities and caregivers, physical and mental health, environmental factors, assistive technology, education, workplace issues, state public health programs, and the issue of data.

The objectives may seem inclusive, while a look at the measures for each objective may seem restrictive.  Taking an objective and translating it into information that can be collected across the population of the United States is a daunting task.  We have been, and will continue to be, working on the data issues.  Be aware of them, but dont let them hamper your focus on programs, policies, and practices that will move us toward the stated objective.  As momentum grows, we will strengthen the data.

You are here because you are people who see beyond your own situation to the larger picture.  Included among you are 20 university people, 23 government employees, and representatives from 37 nongovernmental organizations (NGOs).  The disability community is growing rapidly.  You may not know some others in your workgroup.  Know that you each represent a part of that community with both an individual and group perspective.  Addressing these objectives will require a broad view, while using the knowledge learned from your local activities is required to inform the broader world.  

Your breadth or depth of discussion may cross into other objectives, within or outside Chapter 6.  If it appears that common policies, practices, partners or programs can help more than one objective, terrific.  That should emerge when you meet in clusters tomorrow morning.  

Be creative and inclusive.  Assess how we may involve the private sector as partners.  Those companies who profit from the disability community should be allowed to have a part in helping finance health-promotion activities for people with disabilities in the coming decade.

Your task is to answer the questions included in the packet you received for the workgroup/objective you are working on.  Each group has an instigator/note-taker with the assumption that I know that none of you are shy.  So, instigation is the task of getting folks to introduce themselves, and taking notes?answering the questions?to be given to the project editor, Andrea Sattinger.  

The product of these groups will be to provide a framework, and even specifics, by which others will be able to steer a course toward achieving the objectives.  We plan a larger conference in early 2002 to marshal forces and resources to flesh out the framework youll develop here.

If the ADA was the Bill of Rights for people with disabilities, Healthy People 2010, Chapter 6, can be the Constitution for Health.  Your efforts will provide the foundation for improving the health and well-being of people with disabilities during the next decade.  More than that, however, if the objectives are seriously addressed during the coming decade, the efforts will change the face of America.  I dont mean to say that this will do it all, for other government and nongovernmental efforts have been, are, and will be working for similar goals.  Healthy People, however, allows that balance of lofty goals with clear measures so that we can keep our eye on the goals.  

The Institute of Medicine report entitled The Future of Public Health said on its first page: Public health is what we as a society do collectively to assure the conditions in which people can be healthy.  Healthy People and your admittedly hard work will give us a blueprint to make that assurance real.  

Again, thanks for being here.

EXECUTIVE SUMMARY
Vision for the decade symposium, 2000

At its core, Healthy People 2010 provides a vision for what we want to do, where we want to go, and who we want to be as a nation relative to health.  It does not tell us how to do it.  The overarching goals of HP2010 indicate that what we want to do and where we want to go are expressed by: 1) increasing the quantity and quality of life for Americans, and 2) eliminating the disparities in health among us.  Who we want to be is characterized by the principle of inclusion.  This health agenda, for the first time, specifically addresses the health of Americans living with disabilities.  Disability and Secondary Conditions (Chapter 6) outlines 13 objectives important to improving the health of people with disabilities.  Working toward these objectives contributes to the larger vision of better health for all Americans.  

To begin the process of describing how to achieve the new objectives for people with disabilities in Healthy People 2010 Chapter 6, some 80 people were invited to participate in one of 13 workgroupsone for each of the objectives in Chapter 6 of HP2010.  A critical building block for meeting objectives in a new area is the development of alliances among partners.  These individuals represented roughly 37 nongovernmental organizations and 25 universities, as well as public health staff for the states, and federal employees from health and education.  

Each small group (5-7 people) answered five questions for each of the 13 objectives, including:
1. How practical are the targeted objectives for implementation by the year 2010?
2. What are the major problems in addressing this objective?
3. Who are the governmental, non-governmental, private, and other Healthy People 2010 Consortium members who could/should be partners in implementing this objective?
4. What are initial programs, current or envisioned, and /or policies that could help meet this objective?
5. Are adequate mechanisms in place for tracking progress toward meeting the targeted objectives?  If not, what needs to be done to institute such tracking mechanisms?

This volume includes a summary of the workgroup information, an extended report of each workgroups deliberations, and ends with an integrated set of next steps and appendices including a copy of the reference chapter Disability and Secondary Conditions.  It is clear that no brief overview can do justice to the extraordinary substance included in the individual reports.  However, to provide some sense of the vitality and direction of the effort summarized below are highlights of several general conclusions derived during the symposium.

1.	The objectives in chapter 6 are reasonable and can be achieved by the end of the decade.  Considerably more human and financial resources will be needed for this to occur.  In addition, an undergirding energy based on the strength of partnerships will be required. 

2.	Major problems will be faced, including:
a. a misunderstanding of disability in the general population, devaluing the life experience of people with disabilities;
b. media messages that contribute to a negative image of people with disabilities, resulting in poor self-concept and low self-esteem;
c. a continuing struggle to address environmental barriers to societal participation of people with disabilities;
d. no organizational leadership to assess barriers and address their elimination; 
e. technical problems, including inconsistent definitions of core terms?perhaps especially disability itself?and the need for psychometrically-sound instruments;
f. resource issues, including the need for more financial and human resources, resource allocation problems associated with fragmented funding streams, inconsistencies of resource commitment across states, little incentive for the private sector to be involved in promoting the health of people with disabilities, and inconsistent insurance coverage for preventive services;
g. service integration problems, particularly associated with 1) school and health services, creating mental health issues for families, and 2) the mental health needs of people with disabilities, especially children; and, finally,
h. a lack of training for professionals across disciplines in disability dynamics and issues, especially the impact of environmental factors.

3. These problems, however, did not deter the groups from believing in the viability of the objectives.  The workgroups consensus is that the only way to meet the targets of the objectives is to build effective coalitions.  Members of the coalitions will need to focus on the contribution they can make to the larger good reflected in the objectives.  The organizations will be local through international, small to mega-large, formal and informal, health care and health-related organizations.  All sectors of the disability community will be needed, alongside organizations not usually associated with the disability community, such as architects, city planners, and private industry.

4. The programs and policies (current or envisioned) that provide the substance for addressing the objectives include broad social changes and narrow, almost individual, interventions.  Some of the directions include:   
a.  educating the public and media to understand the experience of disability;  
b.  using the International Classification of Functioning, Disability, and Health (ICF) gives a conceptual framework for understanding the interaction of the person and the environment, as well as providing a classification system for data on the dimensions of the disability process;
c.  encouraging ratification of the United Nations Convention on the Rights of the Child, and acknowledging the shared responsibility toward children and families; 
d.  extending Early Intervention programs to transition times for childrenbeginning school and adolescence, and leaving school;
e.  expanding clinical interventions for mental health needs, and encouraging community connections to meet social needs of people with disabilities;
f.  pressing for community-based placements for children and adults in congregate care facilities; 
g.  advocating for full accessibility of school, workplace and public accommodations so that education, employment, and societal participation are increased, improving quality of life;
h.  reviewing all policies and economic-related practices within government that impact the health and well-being of people with disabilities to ensure that they encourage, rather than discourage, full participation; and establishing standards, guidelines, and policies to facilitate inclusion;
i.  educating and training professionals across disciplines about disability issues;
j.  assessing and supporting the health of caregivers; and
k.  implementing programs in every state, territory, and tribe to promote the health and well-being of people with disabilities.  

5.  Workgroups indicated that data sets currently in place to measure the progress toward objectives are adequate.  However, no workgroup was satisfied with the status of data, and more work is needed to ensure strong data for monitoring the objectives.

The activities generated in this symposium were intended as the first step in the HP 2010 strategic planning and implementation process.  They will be followed by a larger working conference of key stakeholders to generate, mobilize or support alliances and coalitions.  The purpose of that exercise will be to identify programs and policies to be targeted, to specify the actions needed to launch new programs/policies or revise existing programs/policies, to establish priorities for action, and to recommend appropriate administrative and logistical support needed to implement the plans.

This set of workgroup reports was meant to ensure that all objectives would have individual attention.  The next step will allow participants to focus attention on broader themes.  For example, the themes outlined in the Synthesis chapter of this volume include data, children, social/emotional health, societal participation, accessibility/environment, and caregiving/long-term care.  Specific activities could be addressed within each thematic area, emphasizing coalition building, legislative/policy initiatives, research, public/professional education and training, and data issues. 

The next 10 years are pivotal; the current vision and energy will have been focused and harnessed, or an opportunity will have been lost.  The current momentum will be used to eliminate health disparities that exist and increase the quantity and quality of life for Americans with disabilities.  This document provides the foundation for change.

Donald J. Lollar, Ed.D.
Atlanta, Georgia
June 26, 20

SUMMARY OF WORKGROUP REPORTS

Healthy People 2010, the health agenda for the United States for this decade, asserts goals to improve the quantity and quality of life for all Americans and eliminate disparities in health across diverse segments of the population.  The 476 objectives defined in HP 2010 encompass most aspects of our lives as citizensfrom birth to death, across social, economic, ethnic and racial lines to include, for the first time, people with disabilities.  By adding people with disabilities as one of the ways in which people in our country can be described, the health of people who experience disabilities can be viewed alongside the health of people without disabilities.  This action creates an opportunity for public health to focus specific attention on people experiencing disabilities, thus moving this large minority group into the mainstream of public health.  
      
As part of this public health agenda, a separate chapter with 13 objectives, Disability and Secondary Conditions, was included in HP 2010.  (The Chapter 6 document of HP 2010 is included in this volume, see page 7.)  In addition to establishing disability status as one of the descriptor variables for more than 100 objectives, Chapter 6 focuses on pertinent issues of health and well-being for people with disabilities.  The 13 objectives, each representing important aspects of our lives, were hammered out over 4 years by numerous individuals and organizations, and represent all sectors of the disability community.  

In order to obtain direction in achieving each of these objectives, 80 people were invited to Atlanta in December 2000 to divide into 13 workgroups.  The groups were asked to respond to five implementation questions.  The participants of these workgroups (see Appendices) represented disability leadership as varied as is the population of people with disabilities.  This paper is a synthesis of reports from those workgroups and is divided by the topics addressed in each of the five implementation questions.  In addition, seven crosscutting themes identified throughout the 13 objectives provide perspective for analyzing the information from the workgroup reports.  These themes will be used to highlight differences within some of the questions. 

The 80 participants were asked to address the following five implementation questions.  
1. How practical are the targeted objectives for implementation by the year 2010?
2. What are the major problems in addressing this objective?
3. Who are the governmental, non-governmental private and other Healthy People Consortium members who could/should be partners in implementing this objective?
4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?
5. Are adequate mechanisms in place for tracking progress toward meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

The following themes emerged from the objectives:

* Data 
* Children/school
* Social/emotional health
* Participation/work 
* Environment/accessibility
* Caregivers/long-term care
* State activities

1.  How practical are the targeted objectives for implementation by the year 2010?

This discussion begins the journey.  Because HP 2010 marks the first time that specific disability objectives have been included in Healthy People, one would expect questions about how reasonable objectives are, how feasible the targets are, and whether the resources needed to achieve particular objectives are within reach.  Most workgroups indicated that while the objectives were both reasonable and possible to implement by the end of the decade, a pervasive concern was the need for resources, both human and financial, if the objectives were to be implemented.  Several groups focused on the definitions used in the objectives.  Specific issues emerged from the deliberations.

DATA
The core principle of the Healthy People exercise is that health issues can be translated into numbers (representing baselines) to set targets that measure progress toward better health.  The first objective in Chapter 6 emphasizes the need for questions to identify people with disabilities so that their health characteristics can be compared with the rest of the population, and thus can we assess health disparities.  For this objective to occur, a small set of questions must be included in any health-related survey.  The workgroup for Objective 6.1 indicates that while the current items used in surveillance tools differ, they are acceptable for the time being.   Participants were clear, however, that more congruence in operational definitions is needed at both the federal and state levels. Workgroup members suggested that the revision of the World Health Organizations conceptual framework of functioning, disability, and health be used as the standard for understanding data elements.  When possible, specific dimensions of the International Classification of Functioning, Disability, and Health (ICF) should be used to develop items for instruments. 

Finally, participants in the childrens mental health (objective 6.2) workgroup expressed the concern that public health population-based data be used rather than clinically oriented data.  By contrast, the adult mental health workgroup (objective 6.3) suggested that more clinical data be employed to assess the practicality of implementing interventions.

SOCIAL/EMOTIONAL HEALTH
Evaluating the practicality of the emotional support/mental health objectives is a delicate matter.  The workgroups suggest that achieving parity is a difficult target in the mental health area, given the environmental barriers facing people with disabilities?including societal attitudes, media presentation, and lack of resources.

PARTICIPATION/WORK
On the other hand, according to the way definitions are framed, the employment goal may be too easy to reach.  That is, when the statistics are averaged across various severity levels of disability, the difficulty experienced by individuals with more involved conditions is disguised.

ENVIRONMENT/ACCESSIBILITY
All three of the developmental objectives pertain to the general area of environment and accessibility.  By definition, then, there are no current data, making the practicality a moot pointon the surface.  However, if this area was not crucial to the health of people with disabilities, these objectives would not have been framed, much less accepted into the final HP 2010 document.  It is reasonable to include them, and the need for data is pivotal.  The ICF framework that describes the environment is useful for structuring this investigation.

March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch have concluded an agreement by which data to measure this objective will be included in the NHIS supplement during 2002.  

Once the baseline data are analyzed, appropriate targets can be set.  Of particular interest to this area is the practicality of injecting into the society the principles of universal design.  While there is not a specific objective naming universal design, the workgroup asserted the importance of implementing these principles.

STATE ACTIVITIES
Beyond resources, the major element of practicality within this area focused on the lack of activities related to caregiving data and programs in states.  It is clear that addressing caregiving is a practical part of the objective, but the workgroup suggests that it be seen as developmental in nature.  

2. What are the major problems in addressing this objective? 

An overarching theme of the workgroup responses is the lack of coalitions and champions, Congressional or otherwise, for disability and health issues.   The lack of coordinated leadership and a widespread misunderstanding of disability in the general population are significant problems across disability issues, including health.  Specifically, disability is often perceived by the general population to be a negative health outcome rather than a demographic or descriptive variable.   

A major problem for meeting health objectives occurs when the experience of disability is devalued.  Media messages often reflect notions that contribute to poor self-concept and low self-esteem.  A lack of education for people with disabilities and parents of children with disabilities undermines the potential antidote for such messages.  A troublesome corollary to the negative attitudes of the population is the lack of attention to additional environmental barriers.  In particular, no organization or agency is responsible for assessing barriers or eliminating them once they are identified. 
      
Other major problems raised by the workgroups can be divided into several categories:  

Technical problems.  There are technical problems, including inconsistent definitions of terms such as full access, environmental barrier, and disability itself.  In certain areas there is a lack of psychometrically sound measures for assessing objectives.  There is often a lack of visibility for certain subgroups of people with disabilities, including individuals in institutions, those who are deaf, and children.
      
Resource problems.  Resource allocation problems identified by the workgroups included fragmentation of funding streams for programs.  There are disparities across states in commitments of resources, energy, and leadership.   In addition, there are no incentives for the private sector, including employers, to be involved in promoting the health of people with disabilities.  Parity in reimbursement for mental and physical conditions has been and often continues to be problematic.  Inconsistent insurance coverage also undermines preventive and other health services.  
      
Service integration problems.  In schools, the lack of service integration is a major barrier.  Parents are required to be case managers, which often creates additional physical and emotional problems for the parents.  Mental health needs of people with disabilities, and children in particular, are often ignored or underidentified.     
      
Training problems.  Finally, the workgroups routinely indicated that health professionals need training in disability issues.  Poor understanding of the dynamics of the disabling process, the role of environmental barriers, and the diagnosis-centered versus person-centered approach are identified as specific deterrents to meeting the objectives.
      
      
3. Who are the governmental, non-governmental, private, and other Healthy People 2010 Consortium members who could/should be partners in implementing this objective?   

The workgroups are unanimous that the only way to achieve the objectives of the disability and secondary conditions chapter is to build effective coalitions.  Coalitions require groups and individuals to lay aside less important missions for more important ones.  The partners identified by all workgroups ran the spectrum from local to national, and often international, organizations.  They included large and small, general and specific, formal and informal, health care and health-related organizations.  While all sectors of the disability community should be included, several groups reported the need to foster cooperation and collaboration among organizations not usually linked to the disability community, for example, architects and city planners.  

Frankly, it is easy to get so involved in identifying potential partners that we overlook the fact that identification is but the first step in building partnerships.  However, without knowing who could be helpful, we may tend to hold too tightly to our own perspective.  No one approach will achieve an objective.  Multiple interventions across different sectors attending to different features of the objective will be required.  Identifying partners allows us to begin to communicate, then cooperate, and then collaborate on objectives held in common.  If partnerships are seen as concentric circles, several levels could be identified working from the person toward societal partners.  Almost without exception, the workgroups identified progressively more extensive layers of partners.

LAYERS OF PARTNERS
Level One: Most begin with people with disabilities and their families.  This group includes parents of children with disabilities and grown children of parents with disabilitiesboth caregivers. 

Level Two: Community organizations, clubs, and faith-based groups are the second level of partnerships needed for some objectives.  This group includes Centers for Independent Living, as well as support groups that may be diagnosis-specific or more general in perspective.  This second level also includes medical and health care providers.  

Level Three: A third level of partners includes employers, corporations, and industry.  Labor unions will be included as partners for some objectives.  State-based local agencies such as Vocational Rehabilitation, Developmental Disability Councils, and Special Education as well as designers, builders, and planners are also included in this level of partners.  

Level Four: This level is that amalgam of organizations that look at the big picture.  There are many of them, but for our purposes they can be identified as advocacy groups, professional organizations and training programs, health care financing and accreditation organizations, federal and state agencies, foundations, and the media.

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?

The workgroups responses to this question highlight the breadth, depth, and creativity needed to achieve the objectives.  The answers to the questions on practicality (#1) and problems (#2) may evoke an image of the Greek mythical character Sisyphus trying to roll a boulder up a mountain.  The responses to this fourth question, however, coupled with the partnerships (#3), provide guidance about whom to enlist to help push the boulder (partners) and instructions about how to break the boulder into smaller, more easily moved rocks or even pebbles (policies and programs).  The information will be presented here by theme, but also according to the current or proposed nature of the activity.  The reader will find that continuous emphasis is placed on training of professionals, financial incentives, and local and federal programs, along with major emphasis on media management. 

DATA
Promoting disability status as a demographic variable is a policy that has already begun, but needs continued emphasis.  While research is currently being done to clarify operational definitions for both children and adults with disabilities, two related activities are needed immediately.  First, ensure that those survey instruments that include disability identifiers are tracking the appropriate objectives in other chapters (see Chapter 6: related objectives).  Second, identify those instruments that do not include disability items and begin the process of persuasion?perhaps different for each instrument and/or related objective? that will be needed to have disability status included.  Of particular importance are those objectives identified by the Surgeon Generals office as Leading Health Indicators (included in this report under the Appendices).  

Longer-term directions include promoting a framework for understanding disability data across surveys, the leading contender being the WHO International Classification of Functioning, Disability, and Health.  A toolkit of optimal disability measures should be developed.  Examples are the instruments developed by Drs. Gale Whiteneck, David Gray, and Rune Simeonsson to measure participation and environmental factors for adults and children.  Finally, there must be continual efforts to find ways to include undercounted groups in the disability community; for example, young adults with cognitive impairments are often lost to surveys after they reach young adulthood.

CHILDREN/SCHOOL
The workgroups addressing childrens mental health and school inclusion provide complementary directions.  The first programs and policies focus on extension of current programs.  These include extending Early Intervention programs to transition times for childrenbeginning and leaving school and entering adolescence.  Expanding the Early Periodic Screening and Developmental Testing program as a foundation for physical and mental health was also recommended.  Continued emphasis on gaining parity for the coverage and financing of physical and mental health services was recommended.  Increased training for professionals in schools, mental health and public health activities, and other health care and school specialists was strongly endorsed.  Particular attention should be paid to training educational staff regarding inclusion principles and practices.  In addition to school inclusion, social inclusion through community programs, clubs, camps, and faith-based groups needs to grow.  These programs parallel the overall emphasis on teaching and allowing children self-determination.  Personal assistance services at school would reinforce emphasis on individual autonomy and should be explored more fully.  Technology should be enhanced on behalf of physical and mental health through use of telemedicine/telehealth models.  Also, universal design needs to be encouraged in schools and communities along with access to technology that can accommodate childrens different functional skills and styles.  Finally, family support programs across these settings must be strengthened.  

The programs are founded on the principle that the health and well-being of children and their families is a shared responsibility.  Politics aside, the United States is one of but two countries yet to ratify the United Nations Convention on the Rights of the Child.  Achieving our goals for children will rest upon adherence to those rights, and having our nation officially affirm them will provide evidence of our commitment to all our children.

SOCIAL/EMOTIONAL HEALTH
The workgroups focusing on emotional support and health of adults with disabilities emphasized the need for interventions from individual to community to national in scope.  Beginning with strong clinical interventions, including peer programs such as the one at the University of Houston, and community-based programs such as Living Well with a Disability, broad strategies should be enhanced.  Social connections such as those often available through Centers for Independent Living or community recreation centers and churches will allow progress to be made toward achieving these goals.  Incentives to encourage employment can enhance mental health and social and emotional support.  

The workgroups also emphasized the systemic supports needed to achieve these objectives.  Beginning with the media, education and training of professionals is needed.  Efforts to help the media understand and change their often unwitting, but nonetheless negative, representations of disability are imperative.  In addition, programs to improve transportation, transfer technology, and implement universal design contribute to improved mental health status through increased accessibility.  Life satisfaction is heightened.  

Finally, financial incentives at several levels would be helpful.  Reimbursement parity between physical and mental health services is again recommended.  Financial incentives to encourage participation were suggested.  Tax credits and medical-expenditure arrangements were also incorporated into the workgroup reports.  It is sufficient here to communicate the breadth of possible directions to influence these objectives positively, even in the face of major obstacles.

CONGREGATE/LONG-TERM CARE
This workgroup developed parallel emphases from the one objective, Objective 6.7.  The report suggests that as congregate care for children and adults with disabilities is decreased, other issues will emerge.  The principles of permanency-planning for children with disabilities, and person-directed planning for adults with disabilities, must be expanded.  The report indicates that states such as Texas and Michigan have developed prototypes for implementing these principles.  Substantial planning efforts are needed so that appropriate supports are in place for successful integration in the community through family-based programs.  Financial resources need to be associated with a person, not a program or bed.  Incentives for family and community living, rather than institutional living, should be both policy and practice.  As progress is made toward this objective, the concept of aging in place can be encouraged.  Community services should be a sine qua nona givento effectively meet the objective.  Simply moving people out of congregate care without requisite supports would be a hollow and immoral conclusion to a worthy goal.  

Finally, the recurring theme is sounded for training providers working in congregate care as well as the community.  The basic lack of understanding of disability-related issues combined with a general disrespect for the experience of disability often create workers unable to respond humanely to individuals who need to have choices and make decisions about their lives to the fullest extent possible.

WORK/PARTICIPATION
The reports from the two workgroups (Objectives 6.4 and 6.8) have in common involvement in societal activities.  Specific directions that need expansion include increased access to transportation and assistive technology, without which full participation is undermined.  Employer and public accommodations compliance with the Americans with Disabilities Act (ADA) is also included as a foundation for achieving these objectives.  

To achieve the employment objective, it is recommended that the vocational rehabilitation model be overhauled and services follow the updated model.  Eliminating disincentives to work, while providing incentives (e.g. small businesses) will be needed.

A final incentive to increasing work and societal participation will be including maintenance as part of reimbursable payments in addition to restorative therapies.

ACCESSIBILITY/ENVIRONMENT
There are few already existing policies and programs for the objectives focusing on accessibility and environmental barriers.  The first important direction to achieve these objectives is a coherent policy that integrates the varied levels of activity required to open the society for full access.  Developing measures of accessibility is a crucial step, without which progress cannot be measured.  The conceptual background is provided, but the practical development of tools is just beginning.  

Establishing standards, guidelines and policies to establish a code of inclusion and accessibility is a primary effort.  Expanding funding for health and wellness programs would encourage people with disabilities to be more health focused, and health and wellness programs to be more aware of this population.  In addition, providing tax incentives for facilities to be ADA-compliant should be considered.  Creative use of specific state sources, such as the tobacco industry settlement funds, could include in this agenda the health of people with disabilities.  Certification could also provide incentives for facilities to be accessible to people with disabilities.      

This is but a glimpse of the policies and programs included in the workgroup reports.  Without the sincere and extended efforts of partners, with shared commitment and clear activities around which to coalesce, the magnitude of the work is overwhelming.  

STATE AND LOCAL ACTIVITIES
To some degree, the activities included in the section of congregate and long-term care, participation, and environmental barriers are closely aligned with those of this objective.   Directions that will affect people with disabilities are intertwined with issues of independence, health maintenance, and self-determination.  Programs at the state and local level directly contribute to or undermine these goals.    

As with all areas, data are critical elements.  It has been very difficult to tailor questions that will identify people with disabilities.  The questions to identify caregiving are easier to construct, but little public health emphasis has been given to including them in surveys.  Data are needed to characterize people with disabilities as well as caregivers.  

As more states and communities are exposed to disability issues, there will be an increased need for assistance to develop relevant programs.  This may come in the form of specific activities addressing only people with disabilities.  It may more frequently be part of a larger community or state program addressing a specific public health concern.  For example, most everyone can profit from more physical activity and better nutrition.  People with disabilities are more vulnerable to difficulties in these areas, however, and state and local activities should be targeted to people with disabilities.  

Disability-awareness activities are important for the general public, and the Media will be important partners.  Materials need to be developed to encourage people with disabilities to be more assertive in directing their own health.  Community-based interventions are an integral part of achieving the objective. 

Educating and training public health professionals is another important direction if public health is to integrate people with disabilities into its national agenda.  Financing of health services will also be integral to including people with disabilities in state and local activities.  Particular emphasis should be given to evaluating the cost-effectiveness of interventions that prevent secondary conditions and promote the health of people with disabilities.

5. Are adequate mechanisms in place for tracking progress toward meeting the targeted objectives?  If not, what need to be done to institute such tracking mechanisms?

Overall, workgroups indicated that most data sets that are currently in place to track objectives are adequate.  It would be fair to say that no workgroup was extremely satisfied at the time the meeting was convened.  Several workgroups were very concerned about the database for their objectives.  These concerns are reflected in the reports, but additional new information is always placed in the reports.  Two very positive steps have occurred since the completion of the workgroup meeting in December 2000.  

First, an agreement between CDCs National Center for Health Statistics and CDCs Disability and Health Branch (within the National Center on Birth Defects and Developmental Disabilities) will allow Disability and Secondary Conditions questions to be included in the National Health Interview Survey (NHIS) supplements in 2001 and 2002.  Questions in 2001 will address Objectives 6.4, 6.5, and 6.6.  This will provide items that will more clearly assess participation (6.4) while providing national population-based data for Objectives 6.5 and 6.6.  These latter two objectives had used data from 14 states as the initial baseline.  In 2002, questions addressing the three developmental objectives (6.10, 6.11, and 6.12) will be included, thereby providing baseline data for these objectives.  Targets for all the objectives can be set.   

Second, the Leading Health Indicators (LHIs) have been selected by the Department of Health and Human Services (DHHS) (see Appendix I in this report).  These 10 indicators include 22 objectives from Healthy People 2010, and will provide an annual progress report for the nation.  It is a Chapter 6 goal that people with disabilities be included early in these reports.  Sinclair and Campbell have recently completed an analysis of data from the Behavioral Risk Factor Surveillance System (BRFSS) that addresses all 10 Leading Health Indicators (LHIs).  While the official Healthy People data sets do not cover all LHIs for people with disabilities, this is a firm foundation from which to proceed.

Several other tracking issues were raised by workgroups.  There was a trend to encourage the linkage of data sets to evaluate progress toward certain objectives.  Several workgroups were concerned that certain subgroups were not as clearly identified.  School inclusion needs to be monitored by special education classifications, not just globally.  Given the significant disparities for Native Americans, tribes need to be included in the target for public health and disability state programs.  Several objectives indicated that disability should be differentially tracked by specific activity limitation, such as mobility, communication, learning, or behavior.  

SUMMARY
Each workgroup focused intensely on one of the 13 objectives in the Disability and Secondary Conditions, Chapter 6, of the Healthy People 2010 agenda.  They worked to balance the need for scientific public health rigor with the passion for social justice for people with disabilities.  They recognized that disability is a fledgling area in the well-established public health field.  The workgroups acknowledged that we will learn a lot over the next few years as we begin our work to achieve these objectives, thereby making some of the problems, programs and policies dated. Their clearest message, however, is that partnersenduring and committed partners?are essential for achieving the objectives and the broader mission of improving the health of people with disabilities during this decade.


WORKGROUP REPORTS

Objective 6.1 Workgroup 

Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify people with disabilities

Objective 6.1 provides the cornerstone of the Healthy People 2010 (HP 2010) objectives for disability.  We support the importance and feasibility of the two goals of this objective: (I.) To track consistent data regarding people with disability, and (II.) To compare data on all relevant HP 2010 objectives between people with and without disabilities.  

Assumptions   
1. Disability is a demographic descriptor rather than a health outcome.*  As a descriptor, disability should be used to monitor disparities in health outcomes and social participation.  The Americans with Disabilities Act (ADA) provides an important rationale for universal collection of data on disability status.
2. The goals of Healthy People 2010 are well served by calculating Years of Health Lost (YHL) for people with and without disabilities, and not by such conceptually and operationally flawed indicators as Disability-Adjusted Life-Years (DALYs) or its counterparts, in which disability is presumed to reflect a negative health status.
3. The International Classification of Functioning, Disability, and Health (ICF) provides a promising framework for long-term data needs.
4. One of the two overarching goals of Healthy People 2010 is to eliminate health disparities.  Disparities exist for people with disabilities.  This goal reinforces the call for ongoing monitoring for the disability status in all relevant surveillance instruments. 

1.  How practical are the targeted objectives for implementation by the year 2010?

We believe that an existing pair of measures** is adequate for surveillance use as a first step.  However, we recommend setting into motion an agenda for developing a larger disability-surveillance toolkit that would contribute to improving data about both the health status of, and, more generally, related data about people with disabilities.  

The feasibility and importance of Objective 6.1 notwithstanding, substantial scientific, dissemination, and implementation issues encountered in trying to meet the objective require action over the course of the decade.  Substantial staff and other resources should be dedicated specifically to this objective in order to provide the technical assistance necessary to support this work.
  
2. What are the major problems in addressing this objective?

A. In both the general public and in the public health community there is widespread misunderstanding of issues pertaining to disability.  Established groups and institutions with special interests will continue to apply pressure to use and promote scientific measures and models in health, medicine, and public health agencies which conflict or compete with the disability-related goals of Healthy People 2010.  These parties view disability as a negative health outcome and people with disabilities are perceived as being outside the purview of traditional public health practice.  The two efforts must be equally valued and coexist along the continuum of the lifespan.
B. There is a great need to include people with disability as a select population in existing and future surveillance methods and a need to endorse programs and partners that do so.
C. The heterogeneity of people with disability will require educating the public health community about the demographic characteristics associated with the disability variable.  This is of crucial importance.  Disability is not a static phenomenon, but rather its nature is dynamic; disability varies by context, time, developmental phase, and disability type.  Some disabilities may be permanent, stable, and may affect a wide range of physical, behavioral and mental skills; others may fluctuate, deteriorate after flare-ups, or affect only selective skills at a given point in time.  For instance, a person in a wheelchair is disabled in an environment that requires mobility that cannot be accomplished in a wheelchair; however, in a wheelchair-accessible environment, that person is not disabled.  Another example is a child with arthritis who may be extremely impaired in her mobility in the morning and hardly able to get out of bed.  Later in the morning, after medications have begun to work, the same child may jump down the stairs, play with others, and function without limits.
D. In many surveys, substantial groups of people with disability are less visible, not sampled, or in other ways undercounted.  This is especially true of those surveys currently under consideration (e.g., BRFSS).  One particular concern are the children, people in congregate care settings, people who are deaf, and those who are homeless, and those with cognitive disabilities, among others, who are not included and/or are underrepresented.   
E. Due to the biased assumptions underlying the construct of and lack of empirical data for Disability-Adjusted Life-Years and their discordance with ADA principles, we reject the use of DALYs for tracking HP 2010 objectives.  The use of DALYs undermines this objective?that is, DALYs conceive disability as a negative health outcome rather than a descriptive demographic variable. 


3. Who are the governmental, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?  

We recommend following these general activities as they relate to partners.  (Recommendations concerning specific partnerships follow in section IV.)  The status of activities is identified according to whether they will need to assume an ongoing, short-term, or long-term status in surveillance programs.  Ongoing refers to activities that should be conducted throughout the decade.  Short term signifies that they should be achieved by mid-course reviews in 2004; where applicable, more definitive dates are suggested in this list.  Long term signifies activities that should be achieved by 2010.

Foster cooperation and collaboration with other programs that previously have not linked or cooperated with the disability community and their objectives.  The traditional public health government organizations have viewed the population with disability as the responsibility of other agencies, i.e., service agencies.  Efforts are needed to persuade public health agencies that people with disability are a subset of the population and that the health of people with disability is a public health concern.  This activity will require identifying incentives, awards, public relations programs and strategies, and advocates.  Examples of this include programs for specific chronic conditions that depend on traditional medical models, but that also can be linked to disability (e.g., diabetes); and medical education and various types of health promotion programs.  Traditional medical models need to make way for dynamic biopsychosocial frameworks of disability.  The disability community must be brought into this activity.  As part of this collaboration, concentrated efforts are needed for risk assessment and intervention research, and a surveillance agenda for people with disability. (Short- and long-term activity).  

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?  

The following proposed activities are listed in priority order with highest priorities first.  

A. Apply a common framework across targeted surveys for understanding disability statistics.  Develop mechanisms that will provide acceptable and consistent disability-identification criteria.  Provide a comprehensive list of measures that can be researched in a cross-walking activity.  Surveys and other sources that are specified as data sources for disability-specific (Chapter 6) and referenced (i.e., to other HP 2010 chapters) objectives need to be identified and examined to determine their ability to differentiate between people with and without disability.  If these data sources do include a mechanism to identify people with disability, algorithms need to be created to ensure that common identification attributes are established between the various data sources (cross-walking).  Partners for this activity include the Department of Educations (DOE) National Institute of Disability and Rehabilitation Research (NIDRR), the World Health Organization (WHO), etc.  (Short-term and ongoing activity). 

B. For those surveys that currently include disability-related questions:

1. Review and prioritize the other HP 2010 objectives to identify those with the highest yield and highest priority for data collection.  One problem associated with this activity is that the developmental objectives will be dropped if there are not sufficient data to support them.  Partners for this activity would be those listed in HP 2010 as lead agencies on other objectives that specifically identify people with disabilities.  (Short-term activity).  

2. Work specifically for data issues on Chapter 6 developmental objectives.  This is designated as a very short-term activity; other components of HP 2010 may include more urgent objectives.  (Short-term activity) (See March 2001 status update boxes in Objectives 6.10, 6.11, and 6.12).

3. Research and construct a toolkit of optimal disability measures.  Develop new measures and address measurement issues such as validation.  While the consistent questions proposed at the beginning of this paper will begin the process, this activity is intended to produce measures that are more completely based on the ICF.  Partners for this activity include the Bureau of Labor Statistics (BLS), WHO, the Centers for Disease Control and Prevention (CDC), the University of Maryland Joint Program in Statistical Methodology, Centers for Excellence in Survey Methodology (University of Maryland, University of Michigan, and others), University of California at San Francisco.  (Long-term activity).  

C. For those surveys without disability-related questions:

1. Immediately identify opportunities to begin tracking people with disability in major surveys.  Identify opportunities by creating an inventory of surveys and processes for target data collection (the timeframe for this activity is both immediate and ongoing).  This requires identifying health objectives not only in Chapter 6, but also in other HP 2010 chapters that relate to people with disabilities.  This activity first requires determining whether the data source for the objective is capable of identifying people with disability as a segment of the population, and, if so, seeking opportunities to apply the consistent questions.  Related tasks include enumerating the instruments by disability-related objective, contacting the parties responsible for achieving the health objective, and taking whatever steps are needed to add the disability identification questions to these instruments.  The time frame for this is short because of the need to identify at least one data point prior to mid-course review for each developmental activity.  

2. Review and triage the published leading health indicators (LHI) package for HP 2010 and identify areas where the disability community is overlooked.   Disability needs to be promoted as a demographic component for data reports and indicators, especially as it applies to disparities.  Examine LHIs for people with disabilities in various surveys (e.g., BRFSS). Partners for this effort should be the lead agencies of these indicators.  (Short-term activity).  

3. Cross-walk current tracking research.  This would involve developing recodes for variables that will assist in interpretation among surveys.  Undertake an interpretation of the primary measures and other disability definitions must be undertaken.  One possible framework for recoding the variables is the International Classification of Functioning and Disability (ICF).  There have been efforts using international data sets to recode disability variables from diverse data-collections systems into the ICF framework.  (Short-term activity, to be completed by the end of 2002).

4. Promote research on the methods of estimating the type of disability, prevalence, and health status of people with disability in undercounted groups (e.g., those with sensory impairment, in congregate care facilities, children, ethnic groups, and the homeless).  Current and ongoing methods?for example, mental retardation/developmental disabilities (MR/DD), Individuals with Disabilities Education Act (IDEA), and 504, are segmented.  (Short and ongoing activity). 

D. General education and promotion of disability as a demographic variable

1. Articulate and promote the issue of the value of viewing and defining disability as a demographic variable.  This activity involves: 
a. Promoting the understanding of disability as a demographic descriptor with heterogeneity, similar to other grouped classifications such as ethnicity/race or sex.
b. Promoting, among other programs and public health entities (e.g., state health departments), the concept of identifying people with disability as a select population for HP 2010 objectives, related to the goal of reducing health disparities.  This activity will require support through an identified or developed educational process.  (Long-term activity).  Partners for these two activities include NIDRR and the general public health community, not only as partners but also as a focus for the activitys attention.  Targets for this activity include the Association of State and Territorial Health Officers (ASTHO), Council of State and Territorial Epidemiologists (CSTE), and state BRFSS and child survey coordinators.  (Short-term activity).  
c. Enlisting and informing Congress on disability-related issues, including the need for data, and their overall relevance in health and human rights policies.  Partners for this activity include non-profit private agencies and disability advocacy groups.  This activity includes educating and working with the Office on Management and Budget (OMB).  (Short-term and ongoing activity).  

2. Promote media and scientific dissemination of health statistics about people with disability to publications that include the Morbidity and Mortality Weekly Report (MMWR) and other scientific and lay media, particularly those having a broad public-health audience.  Partners for this activity include the Center for An Accessible Society and the media.  (Short- and long-term activity). 

F. Resources 

Support Objective 6.1 with specific staff members who will have dedicated time for activities related to this agenda.  These activities will require public and private partners to conduct and monitor the progress of Objective 6.1.  For this reason, we request the ongoing supervision of progress with Objective 6.1.  Partners: The lead agency on this list of partners would be CDC.  Additional partners might be NIDRR (Disability Statistics Rehabilitation Research and Training Center at UCSF) and academic research groups.  (Ongoing activity).  

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

Tracking progress for this objective will be straightforward.  Such a heterogeneous population requires a battery of flexible assessment tools.  Generic tools will be relatively meaningless in tracking progress since they may be insensitive to the specific needs of a particular population in question.  While several HP2010 tracking instruments contain items that identify a few diagnostic conditions, at this time, only two (2) surveillance tools are standardized to identify people with disabilities: 1) BRFSS, and 2) NHIS.  Across the decade, however, this number should increase, reaching all relevant data sets by 2010.  

REFERENCES

1. McNeil JM. Americans with Disabilities, 1994-95. Washington, DC: US Department of Commerce, Bureau of the Census. Current Population Reports: series P70, no 61; 1997. 

2. US Bureau of the Census, Income Surveys Branch. Overview of the Survey of Income and Program Participation (SIPP). Washington, DC: US Department of Commerce, Bureau of the Census; 1999. 

3. Lollar DJ, Fedeyko H. Using the World Health Organization framework to define activity limitations: data from the 1994-95 National Health Interview Survey. Presentation, American Psychological Association. Boston: August 14, 1998. 

Objective 6.2 Workgroup  

Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed

Introduction 
A broad range of societal, familial, and individual factors influences the emotional health and well-being of children who have disabilities and chronic conditions.  This objective allows us to capture, in a single outcome measure, the effects of interventions that cross levels of those influences upon these children and their families.  

There is universal, international support for this objective, as articulated in the report of the 1989 United Nations Convention on the Rights of the Child,1 which asserts that policies and services responding to the needs of all children are a fundamental societal responsibility.  The Surgeon Generals current initiative concerning childrens mental health provides a positive context and leadership for efforts related to this objective.
1. How practical are the targeted objectives for implementation by the year 2010?

The targeted goal of reducing a baseline of 31% to a target of 17%* is practical for implementation by the year 2010.  This conclusion was based on the following points.

A. The Surgeon Generals initiative, including a recent conference and report on child mental health,2,3 provides a context for Objective 6.2.  This initiative brings the visibility and credibility of the Surgeon Generals office to bear on the underlying issue.

B. The specific target of 17% is derived from the best available assessment related to addressing child mental health.  Although another target may ultimately prove more appropriate or feasible (given the variety of factors that affect the psychological well-being of children with disabilities), the NHIS data that are currently available suggest a need to focus on overcoming the disparity between children with and without disabilities.  (See Objective 6.1 regarding disability as a demographic descriptor.)

C. In this venue we are concerned with parents reports of their childrens sadness, unhappiness, or depression (in a non-clinical sense) as opposed to depression as a clinical diagnosis.  We do not, therefore, have to rely solely upon clinical intervention and assessment to address the disparity.  Rather, a broad range of interventions may be relevant and effective.

2. What are the major problems in addressing this objective?

A. As a general overview, the critical challenges that confront us include the following.
1. Broad aspects of our prevailing culture are antithetical to the mental health of children in general and particularly destructive for children with chronic conditions or disabilities. 
2. A school climate exists in many districts in which students subject any child who appears different to abuse ranging from ostracism to ridicule to assault.
3. As a broad tendency, key service-delivery systems ignore the mental health needs in children with physical disabilities, and underidentify:
a. mental health conditions in children; 
b. broad, societal interventions to promote positive mental health; and 
c. clinical services to treat those with manifest mental health problems. 
4. There is a lack of instruments, training, and financing to identify children with mental health service needs, and a lack of access to and use of those services.

B. A broad range of examples of more specific problems must be recognized in addressing this objective.  These problems reflect the general, societal neglect of child mental-health needs as well as specific barriers to primary, secondary and tertiary intervention in addressing mental health needs among children with disabilities.  We determined the following problems.
1. A depressogenic culture that present images and messages that lead children to feel bad about themselves.  These images and messages, such as those often reflected in the media are particularly destructive for children with disabilities. 
2. Narrow definitions of eligibility for specific mental health (and other) programs that restricts access and use such that only those who are truly needy (e.g., those with diagnoses) are served; thus there is limited opportunity for primary and secondary mental-health prevention efforts. 
3. The need for interventions that target both environmental and individual factors affecting mental health.  Environmental intervention is particularly difficult since it involves changes at the societal level.
4. A lack of parity in reimbursement for health needs above the shoulders (e.g. oral, optical), and especially mental health versus physical health services.
5. Managed-care restrictions on mental health benefits. 
6. Among disability groups, there is frequent competition for scarce resources.
7. A lack of reliable and valid clinical tools for screening or risk-assessment purposes that can be used in nonmental-health settings, such as schools and by primary care physicians.
8. A lack of training about mental health for teachers, primary care providers (including family practitioners and pediatricians), etc.
9. A tendency to focus on the primary condition of children with disabilities and ignore mental health disorders as a secondary condition.
10. A need for continued and expanded leadership at the national level (beyond the Office of the Surgeon General) around childrens mental health.
11. Parental mental health needs.

3. Who are the governmental, nongovernmental, private and other Consortium members who could/should be partners in implementing this objective?

Potential partners for this objective include:
A. Parent groups and advocacy (both diagnosis-specific and cross-disability) 
B. Child and mental health workgroups from the other HP 2010 chapters, and those involved in implementing the Surgeon Generals initiative 
C. Professional organizations (e.g., the American Academy of Pediatrics) 
D. School personnel and state departments of education
E. Those in higher education who are involved with training relevant personnel and young professionals
F. Corporations (particularly industries that profit from production of disability-related goods and services)
G. The media
H. Federal and state partners in the areas of mental health, public health, law enforcement, and child protection
I. Faith-based communities
J. Private nonprofit organizations
K. Private and public insurance companies that need to reimburse for child mental health services

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?

A. Policy and program changes to meet the mental health needs of children require: 
1. Acknowledging the universal need for individualized supports by families of children with chronic conditions.
2. Assuring public funding for child mental health services.  Multiple program initiatives can contribute to achieving this objective, including both broad interventions (which are available on a population basis for children, particularly at transition sites or points that place children and families at high risk), and interventions targeted to individuals with specific mental health problems.
3. In-school education campaigns to improve tolerance of children who appear different for any reason, and no tolerance policies regarding bullying and other abusive behaviors; this is particularly needed at the middle school level.

B. Four key policies to promote achievement of the objective would be to: 
1. Adopt the United Nations Convention on the Rights of the Child,1 that defines response to the health needs of children as a basic societal responsibility.
2. Create a national policy recognizing the universal need for individualized supports by families of children with special health care needs.  This concept builds upon, but surpasses, the American Academy of Pediatrics (AAP) medical home concept.** 
3. Create means by which multiple government and societal sectors (including, but not limited to, public health) will formally recognize that child mental health is a shared responsibility and not someone elses job.
4. Achieve parity in insurance coverage and benefits for mental health and other health services, and secured financing of mental health programs.

C. Proposed program initiatives are:
1. Replicate the Early Intervention model for other age groups.  This model combines family services, family-to-family support, and therapeutic services for the child in a setting that is as integrated as feasible.  The model may be particularly important for children with disability and their families at key transition sites/points such as growing from preteen to teen, or moving from school into work.
2. Fully implement Early Periodic Screening, Diagnosis and Treatment (EPSDT), both as a source of financing and as a programmatic base for providing all medically necessary services, including mental health, for children with special health care needs.
3. Implement mental health promotion programs for children with special health care needs (cshcn) through many types of community-based settings (e.g., schools, faith-communities, park districts).
4. Maximize inclusion in socialization programs, including programs with peers without disabilities and programs that are provided exclusively for children with disabilities.
5. Train multiple professional groups about mental health issues and needs.  Such training should include the ability to identify children with mental health conditions or risks.  

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

We recommend that NHIS data and other comparable data sources be used to monitor the impact of these recommended activities. 

REFERENCES

1. United Nations, General Assembly. Convention on the Rights of the Child. (A Res. 44/25); November 20, 1989.

2. US Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health; 1999. Chapter 3: Children and Mental Health.

3. US Department of Health and Human Services. US Public Health Service. Report of the Surgeon Generals Conference on Childrens Mental Health: A National Action Agenda. Washington, DC; 2000.



Objective 6.3 Workgroup  

Reduce the proportion of adults with disabilities who report feelings such as sadness, unhappiness, or depression that prevents them from being active

Introduction
The workgroup fully endorses the objective.  In order to accomplish this objective, work must be done to address issues at both the individual and environmental (societal) levels.  Individuals with disabilities are likely to have multiple and unique issues that may contribute to states of unhappiness, sadness, and depression.  

1. How practical are the targeted objectives for implementation by the year 2010?

It is important to note that the words in Objective 6.3 that emphasize depression and unhappiness are not specified in the NHIS survey question (Adults Core CAN.471).* There is a concern as to how easily the terms transfer to the objective.  The objective, however, focuses on emotions that may inhibit participation.  The 7% target (parity with the general population)1 appears to be unrealistic for the following reasons:  

A. This objective is calling for reducing from 28% to 7%the proportion of people with disabilities who report these emotional states ?a 75% reduction and improvement.  A lowered expectation, in part, would include the observable predominance of emotional-state risk factors based on race, age, income, gender, and educational level. 
B. A 28% baseline would seem to be too low for the disability group.  Some research suggests this figure may be much higher?perhaps as high as 59% or greater, especially for women.2
C. There should be a re-analysis to examine the case definition of disability status (the denominator) for this item to determine if a finer and narrower definition would be more valid.  

2. What are the major problems in addressing this objective?  

We have identified four areas in which problems exist for addressing this objective.

A. Assessment 
1. Address both the broader societal issues and the individual clinical level contributing to depression.  The current assessment tool does not utilize a clinical measure that suggests the severity of depression nor does it identify the environmental factors that may influence the outcome.  Assessment should also evaluate the root causes of depression and sadness, and clarify real operative issues, such as the consequences of environmental, biologic, or situational problems. 
2. National questionnaires that can identify the overlap of disability and other issues must be developed; advocate for developing another NHIS disability supplement.
3. Develop and validate instruments for assessing depression in the context of disability.
4. Develop valid tools for assessing emotional states and obtaining proxy reports for people with significant cognitive limitations who may not reliably report emotional states or answer questions about their experiences using existing standardized instruments or measures.

B. Unavailability of prevention and treatment services
Funding support is needed to increase the availability of effective support services including reimbursement mechanisms that would facilitate widespread implementation of, access to, and use of such services and treatment. 

C. Empirically-based information needed
Depression within the context of disability (i.e., depressive features as they may present and be managed in people with disabilities) has not been adequately investigated.  Research will help to: 
1. Conduct clinical trials to evaluate prevention and treatment interventions, targeting key correlates of depression in the context of disability (e.g., income, education, perceived stress, disability specifics, fatigue, pain, abuse, and social isolation).
2. Develop and evaluate training programs for mental health providers and other providers who are often not trained to recognize mental health issues in the context of disability.
3. Raise general public awareness and therefore help to reduce stigma about emotional problems that might be addressed through intervention.
4. Build on the existing knowledge base, and develop and test mechanisms of change (e.g., role of self-determination). 

D. Disability culture
In general, people with disabilities are optimistic about the future but pessimistic about what will happen for them as individuals.3

3. Who are the governmental, nongovernmental, private and other Consortium members who could/should be partners in implementing this objective? (Table 1)
The theory of just societies tells us that for justice to occur, change must happen on every level; therefore, partners are necessary across the board. 
A. From an environmental (societal) perspective?those who are involved in supporting structures for self-advocacy and for changing the world in which we live?partners would be those involved with transportation, housing, poverty programs, health delivery, architecture, employment, childcare, and education.  
B. Programs that are designed to meet the largely individual needs of people with disabilities include state mental health agencies, disability-related agencies, vocational rehabilitation entities, health care entities, and Centers for Independent Living.  
C. In addition, all workgroups for HP 2010 Chapter 18 (Mental Health and Mental Disorders), and the peoplethose working on other HP 2010 objectives? should all be taking people with disabilities into consideration as they do their planning. be considering the needs of people with disabilities in their deliberations and plans. 

Table 1.?Partners in Addressing Individual and Environmental Variables of Objective 6.3


Partners in Addressing Individual Needs and Providing Treatment Services
Partners in Addressing Environmental Variables

Local
Centers for Independent Living (CILs)
Mental health centers
Churches and other faith-based communities, to provide counseling and referrals
Private practitioners
Shelters (for the homeless, battered partners, etc.)
Veterans Administration (VA)
Employee Assistance Programs (EAP)
Personal assistance and home health agencies
Area agencies on aging
Centers for Independent Living (CILs)
Alliance for the Mentally Ill (AMI)
People First
Churches and other faith-based communities
The media

State
State Councils for Independent Living (SCILs)
Vocational Rehabilitation Councils
State offices of mental health
State mental retardation/DD offices
Area agencies on aging
State Councils for Independent Living (SCILs) 
Developmental Disabilities Councils 
AMI
People First
The Arc
The media  



4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?  

A. Programs that work and issues for consideration
 There are three levels of programs on depressionPrograms for depression target three levels: 1) an individual level, 2) a social-support/interpersonal program level, and 3) an environmental change level.  In this last type of program, attention is shifted from the self and this helps to increase the opportunity for personal satisfaction; thus, people with disabilities can find their that their involvement in advocacy becomes personally meaningful.

1. At the individual level, stress and social isolation are associated with depression.  
a. We need programsPrograms are needed to help individuals develop self-management skills and make social connections.  Policies and programs in this area will need to be coordinated with those recommended by the workgroups for HP 2010 Objectives 6.5 (Emotional Support) and 6.12 (Environmental Barriers).
b. Empirically demonstrated packaged programs that can be delivered by professionals, paraprofessionals, consumers, and peers include those described by Lorig,4 Ravesloot,5 and Seligman.6  Research initiated at the University of Houston7 involves a program broad enough to usethat may be broad enough to use peer interventionists to teach self-management therapy for the behavioral management of depression.  This Designed for the general population, this program could be modified for people with disabilities, using peer-led groups evaluated at CILs and in s emphasis rehabilitation and community settings.  
2. At the societal level, injustices lead to conditions that promote depression.  Efforts to address social justice reduce prejudice and discrimination, which can help ameliorate feelings of alienation and isolation, and may promote a sense of dignity and belonging.  
3. When people participate in programs that get them engagedin which they feel fully engaged, they begin to report fewer barriers to participation.8  This suggests the importance of addressing emotion as a barrier. 
4. When implemented, concrete programs for assisting people with housing and transportation work well in contributing to improved emotional status and participation.

B. Programs that Work at address the individual and environmental levels to reduce sadness, unhappiness, and feelings of depression experienced by people with disabilities.

Programs can be viewed as those that address more specific individual levels of effect or those that target social or environmental activity.

Individual level
1. Screening needs to be recognized as important for identifying depression, but an easy, simple, and cost-effective method should be developed that does not just put the sole responsibility for screening on primary care providers.

2. Health care providers and others need to have a greater awareness of depressive symptoms and reinforcement be reinforced for client/patient referrals.  The relation of affect (emotions/anxiety, depression) to behavior (social participation) must be included in their assessments. 

3. Provide training in disability issues to cross-cut professional-service providers so that they come to understand the inherent risks and response strategies.

4. Web-based self-management needs to be developed but there should be certified Web sites that present useful information for consumers, family, and providers.  Models such as Consumer Reports or validation checklists might be used for certifying these sites.  Accessibility and usability criteria should be used to assess the information provided in these Web sites to ensure that parity is possible for people with disabilities.  One example of this is availability of information via a screen reader; another is the Web-based self-management program for exercise provided by the National Center on Physical Activity and Disability (NCPAD).

5. Increase consumer awareness and training so that there is greater understanding and potential for evaluating information on the Web that purports to treat mental health. 
(PEARL)
6. Develop instruments and methods that can measure depression and stress related to cognitive and communicative impairments (e.g., the learning domain) within the population of individuals with disabilities.  

7. Institute reimbursement policies that would make prevention pay, such as Medicaid policies that provide adequate compensation for professional providers but also incorporate reimbursement of peer counselors who deliver demonstrated programs (e.g., Seligmans Learned Optimism6 and other packaged programs such as Living Well with a Disability5).

Social and environmental level
1. The Department of Transportation (DOT) should revisit their its national assessments of access to and use of transportation by households without cars in order to assess, in particular, the access by people with disabilities and the uses of transportation.  Include a minimum assessment of the effects of access or lack of access on quality-of-life (QOL) issues.

2. Programs are needed to help provide accessible and usable housing.  When people are able to live independently, their emotional health and social participation can be improved.

3. All recreation programs (city, county, YMCA, etc.) should be accessible and usable, and there should be a means of assessing the status and methods of implementing changes, and a method of monitoring the degree of change over time.

4. Solutions for environmental barriers, more programs, and greater participation of people with disabilities are all needed.  We also need populationPopulation-based change in universal design is also needed.

5. City and regional planning groups should be brought in to the role of ensuring that buildings meets accessibility and usability guidelines.

6. The media need to be rewarded for their their progress and should continue to be exhorted to provide a positive portrayal of disability to the broad public.  People with disabilities also need to be a part of the media.  The NIDRR-funded project Accessible Society Action Project offers one model of increasing media awareness of disabilities. 

7. Work to equalize Medicaid policies so that they will offer mental health services that address this objectives problem.  The primary way this is likely to be achieved?by providing reimbursement for both individual and group services?is to get this coverage requirement included in the basic package that all states must demonstrate in order to qualify for Medicaid participation. 

8. Employer-based wellness programs need to include components that address disability and the needs of people with disabilities.**  This is consistent with employer movements to maintain employees as a cost-management and productivity strategy.  

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

As a foundation for tracking this objective, we recommend adequate mechanisms be identified or devised to address the case counting problem.  We recommend using standardized instruments (i.e., NHIS) primarily, but we also strongly recommend considering adding federally mandated or federally supported special surveys among people with specific types of disabilities.  For example, we suggest using surveys that will bring to light existing limitations of activity, communication, self-care, and learning?that is, surveys that incorporate 1) the NHIS question (Adults Core CAN.471), and 2) standardized instruments of behavior and emotional problems, and 3) some special questions that are designed for disability-specific limitations.  In our judgment, this is what needs to be done to better determine the reliability and validity of the NHIS question.  We recommend repeating the NHIS disability supplement in the future.  


REFERENCES 

1. Sinclair LB. A review of Healthy People: the health of people with disabilities. Atlanta, GA: Centers for Disease Control and Prevention; 2001. To be submitted for publication.

2. Hughes RB, Swedlund N, Petersen N, Nosek MA. Depression and women with SCI. Topics in Spinal Cord Injury Rehabilitation. 2001;7(1). In press.  

3. Harris L. 2000 NOD/Harris Survey of Americans with Disabilities. New York: Harris Interactive, Inc; 2000.  

4. Lorig K, Holman H, Sobel D, Laurent D, Gonzalez V, Minor M. Living a Healthy Life with Chronic Conditions: Self-management of Heart Disease, Arthritis, Stroke, Diabetes, Asthma, Bronchitis, Emphysema and Others.  Palo Alto, CA: Bull Publishing Company; 1994.

5. Ravesloot C, Young QR, Norris K, Szalda-Petree A, Seekins T, Duffy SW, et al. Living Well with a Disability: A Workbook for Promoting Health and Wellness. 2nd ed. Missoula, Mont: The Rural Institute on Disabilities, The University of Montana; 1998.  

6. Seligman MEP. Learned Optimism. 2nd ed. New York, NY: Pocket Books; 1998.

7. Rehm LP. A self-management therapy program for depression. International Journal of Mental Health. 1985;13(3-4):34-53.    

8. Southwick C, Ravesloot C, Seekins T. Barriers to participation in health and wellness programs for people with disabilities: urban and rural differences. Missoula, Mont: Research and Training Center on Rural Rehabilitation, Rural Institute on Disabilities, University of Montana. Unpublished manuscript. 



Objective 6.4 Workgroup 

Increase the proportion of adults with disabilities who participate in social activities 

Introduction
We believe that life, liberty and the pursuit of happiness are intricately connected to social participation.  Social participation is critical as an indicator of health and well-being, especially given that humans are innately social creatures.  

1. How practical are the targeted goals for implementation by the year 2010?

Target: 100 percent
Baseline: 95.4 percent of adults aged 18 years and older with disabilities participated in social activities in 1997 (age adjusted to the year 2000 standard population).
Although we fully endorse Objective 6.4, the target for objective is impractical because the current survey item used to assess that goal is neither valid nor sensitive.  We believe that the proposed measures (see below, 6.4 section V.) are practical; however, they will require investigative work to further define these measures, their goals, and their ongoing practicality.

The issue of practicality must be addressed in at least two areas: 1) achievability of the target in terms of ambitious expectations, and 2) achievability based on available legislation, infrastructure, resources, knowledge, ongoing efforts, and history of progress in this area.  


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch (DHB) have concluded an agreement by which data to measure this objective is included in BRFSS National Health Interview Survey supplement during 2001.  New baseline data will be available in 2002.  


2. What are the major problems in addressing this objective?

A. The gold standard or goal for the desired outcome for social participation is currently undefined.  

B. There are known barriers that relate to increasing social activities among adults with disabilities.  These barriers include:

1. Inadequate transportation
2. Architectural barriers
3. Policy and practice barriers, such as those that lead to unemployment and underemployment
4. Communication barriers
5. Attitudinal barriers; examples are health care providers who do not consider social participation to be as important as other clinical outcomes; or people with disabilities may not feel welcome to join in activities, so that attitudinal barriers may be two-sided in terms of their impact.
6. Health conditions (physical and mental health) that impact social participation
7. Unsafe, inaccessible and segregated low-income housing
8. Inadequate school-based opportunities for social participation during and after hours

      
C. A position paper needs to document the scientific basis of social participation as essential to the health and well-being of all people including people with disabilities.  

D. An additional problem for this objective is the fragmentation of government-based funding streams for disability risk assessment and intervention research, training, and information dissemination.

3. Who are the governmental, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?

A. Government partners
1. Congress
2. Research agencies and institutes such as the National Institutes of Health (NIH), National Institute of Disability and Rehabilitation Research (NIDRR) 
3. Agency for Healthcare Research and Quality (AHRQ) 
4. National Council on Disability (NCD)
5. Departments of Transportation (DOT), Labor (DOL), Justice (DOJ), Education (DOE) the Interior (DOI), Health and Human Services (DHHS), and Housing and Urban Development (HUD)
6. Veterans Administration (VA)
7. Small Business Administration (SBA)
8. E-health (Web based) efforts
9. State Assistive Technology Act Projects (ATAP)
10. Presidents Committee on Employment of People with Disabilities

B. Nongovernmental partners 
1. Foundations such as the Robert Wood Johnson Foundation.  (This would call for a strategic and sustainable joint research agenda.)
2. Social organizing groups including the NAACP (National Association for the Advancement of Colored People), National Council of Churches (NCC), National Organization of Women (NOW), AARP, La Raza (Hispanic Health Group) and National Indian Health Board (NIHB)/National Congress of American Indians (NCAI).  
3. Disability-related advocacy organizations include the National Council on Independent Living (NCIL), Psychiatric Survivors, National Association of Mental Impairments (NAMI), Consortium for Citizens with Disabilities (CCD), United Cerebral Palsy Association (UCPA), The Arc, Association of Programs in Rural Independent Living (APRIL), National Organization on Disability (NOD), Amputee Coalition of America (ACA), and others.  
4. Organ-specific and health/disease-specific groups include organizations such as the American Heart Association (AHA), American Lung Association (ALA), and American Cancer Society (ACS).  
5. Labor unions, and public and private groups addressing generic health promotion, are other potential partners in this category. 

C. Private partners
1. Managed care organizations and other health insurance companies
2. Recreational programs, both public and private (e.g., parks, health and fitness facilities)
3. Health-related self-help groups (e.g., Weight Watchers, Jenny Craig, 12-Step programs)
4. E-health companies
5. Auto manufacturers as a group
6. Employee Assistance Programs (EAP)
7. Sports, recreation, travel, and entertainment industries
8. Media and advertisers: regarding portraying people with disabilities (in television series and advertisements) as socially participating 
9. US Chamber of Commerce
10. US Better Business Bureau.

D. Other partners
1. Professional health and health care associations
2. Academic partners 
3. Health care accrediting bodies, such as the National Council on Quality Assurance (NCQA) and Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
4. Groups devoted to topics associated with complementary medicine

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?

A. Technology and environment
1. Allocate more resources to enforcement of current legislation to promote full access and social participation of people with disability (i.e., disability civil rights laws).  Governments at the federal, state, and local levels should provide leadership in implementing full access to buildings, programs, and services.  That is, government buildings and programs must provide reasonable accommodation for people with disabilities.  

2. Investigate, document and disseminate best practices in the for-profit sector working for universal design to bring to bear the cutting edge of private sector entrepreneurship as quickly as possible.

3. Promote research and development in technology transfer.  This will help make assistive technology widely available as soon as possible.

4. Institute universal design of equipment and structures in educational settings.

5. Promote broader accessibility in information technology such as Web-based information transfer through regulatory and incentive procedures.

B. Financial incentives 
1. To help achieve full social participation of people with disabilities, encourage businesses to take advantage of existing incentives (tax credits and deductions).  Without these incentives, this is a low-priority focus for these entities.  Cost can be a significant barrier to businesses aggressively engaging technologies and methods with the purpose of increasing participation.  Support 1) research about cost-effective ways that accessibility and usability can be incorporated with 2) aggressive information dissemination to local community businesses.  Show businesses that universal design is good business.  For example, the test talkers/email that was originally designed for people with hearing impairments is now a communication standard.  Universal design can be a better and more marketable design. 

2. Provide a non-itemized tax credit to adjusted gross income for disability-related expenses.  With such a proposed deduction, people who do not itemize their taxes can also benefit.  This will encourage providers proactively to recommend, prescribe, arrange, and support appropriate assistive services. 

3. Reduce the percentage of medical expense exclusion necessary for medical deductions.  Lowering threshold levels for individual taxpayers to qualify for tax relief for assistive technologies will enable and encourage more individuals to access and use these technologies.    

4. For people with disabilities, provide tax credits and loan policies for procuring goods and services that promote social participation (e.g., vans, assistance services, assistive technology, etc.).  Rather than offering these amenities as a charitable gift, they would be targeted to those people with disabilities who have high disability-related living and health expenses.  

C. Professional issues: assessment and training 
1. Encourage the health care professions to include assessment of social participation/support, in addition to mental and physical health, as part of routine care, and address funding issues that would facilitate such assessment.  

2. Consider the implications for training health professionals about increasing social participation of people with disabilities.  Create links to programs in the generic health care disciplines to infuse these concepts into training.

D. Community incentives
1. As part of diversity and cultural competence considerations, promote broader inclusion of people with disabilities; for instance, include the provision of interpreter services in social and recreational activities. 

2. Allow universities and colleges to be included as eligible for the community development grants that encourage the social participation of people with disabilities.

3. Create incentives for places of worship and other community-based organizations to perform outreach and support the participation of people with disabilities.

4. Create mechanisms for funding support to engage people with disabilities in programs of the arts, sports, etc. 

E. Perspective and leadership 
Encourage the perspective of societal participation as integral to health.  Stabilize and enhance a lead role for CDC Disability and Health Branch to coordinate federal agencies that are addressing issues of disability and health. 

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

Mechanisms for tracking progress of social participation are inadequate.  The proposed measures are not part of a current data-collection system.  They would require development, pilot testing, and implementation with the endpoint built into a core, national, ongoing surveillance system.  Surveillance systems that rely on telephone surveys without adequate accommodation for people with communication needs, as well as other impairments (e.g., BRFSS), are not adequate as a single measure.1  


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch (DHB) have concluded an agreement by which data to measure this objective is included in BRFSS National Health Interview Survey supplement during 2001.  New baseline data will be available in 2002.  


As currently constructed, the HP 2010 measure of social participation does not adequately reflect social participation or quality of life.  The calculated baseline measure of 95.4 % is too close to the target of 100% participation to be able to document real change.  Furthermore, the current measure for this objective is, in actuality, a measure associated with disability only as it is an indicator of assistive technology utilization.  (See March 2001 status update boxes in this objective paper).

To address the problems cited above, we propose that newly developed measures uphold the following principles.
1. Measures need to be valid/relevant such that they measure social participation.
2. Behavior and expectation measures need to measure self-reported social participation (Yes/No or frequency), and reflect relative perception?that is, satisfaction as it is demonstrated by the level and/or diversity of the participation.  
3. Measures need to capture the diversity of social participation?i.e., work, leisure, family, friendships, and community life (such as politics, worship, recreation, and volunteering).
4. Measures need to reflect informed, self-defined expectations as well as community opportunities.  In other words, analogous to the saying A fish doesnt know its in water, people with a disability can only truly assess their level of participation relative to a standard that includes opportunities available to everyone. 
5. Measures need to be sensitive to change.
6. Every culture has a different attitude about its members who have disabilities participating in social activities.  Addressing this problem will have to be culturally specific. 

The following are proposed as straw measures that exemplify the aforementioned principles.  These measures will require further exploration to yield psychometrically sound measures with data-based standards/goals.  These serve only as examples of potential measures and standards.

Straw measure #1: Number of social participation activities in two (2) or more of the following categories in a week?work, leisure, recreation and sports, gatherings of family and friends, social clubs or hobbies, community events or gatherings, Internet chat rooms.  Standard/Goal #1: 75% of people participate in 25 or more activities per week.2,3,4

Straw measure #2: How satisfied are you with your social activities? (The measure is achieved using a four-point Likert scale).  The Standard/Goal #2: 85% of people report 3 (somewhat satisfied) or 4 (satisfied).

Recommendations 
1. A legislative mandate and funding for ongoing monitoring should be assigned to CDC.  
2. Consider alternative extant data collection methods such as those associated with the Social Security Administration (SSA), University Affiliated Programs (AAUAP), and the Maternal and Child Health Bureau (MCHB).  
3. Explore the development of community accessibility and usability profiles for potential use in Healthy People 2020. 
4. As with all HP 2010 objectives and measures, these profiles should be reviewed regularly for ongoing relevance.  
5. The new question(s) to be included in the 2001 National Health Interview Survey supplement (one is provided here under 6.4, section V), will provide a stronger mechanism for tracking progress.

REFERENCES  

1. Parsons JA, Baum S, Johnson TP. Inclusion of disabled populations in social surveys: reviews and recommendations. Study Research Laboratory, University of Illinois at Chicago. Chicago: National Center for Health Statistics; December 2000.

2. Kemp BJ. Quality of life while aging with a disability. Assistive Technology. 1999;11(2):158-163.

3. Kemp B, Ettleson D. Quality of life while living and aging with a spinal cord injury and other impairments. Topics in Spinal Cord Injury Rehabilitation. 2001;6(5):116-127.

4. Harris L. The NOD/Harris Survey on Employment of People with Disabilities (951401): Louis Harris and Associates, NOD. 1995. 


Objective 6.5 Workgroup

Increase the proportion of adults with disabilities reporting sufficient emotional support

Assumptions
Recognizing that an individuals social support system varies depending upon a persons age, a life-span approach is fundamental when assessing whether individuals are receiving sufficient emotional support.  Transitional programming will need to be outlined to assist people with disabilities who are moving between and through life stages, particularly adolescence and the aging process.  These changing life stages involve learning new personal and social roles, knowledge (e.g., about sexuality and peer relations), personal awareness, and individual and societal expectations.  Problems in moving thorough life stages and roles can be catalysts for becoming socially isolated or excluded.  There are also strong cultural elements in how we define social-emotional support.  We realize that placing emphasis on the development of natural supports (people who are already in the lives of people with disabilities) is essential to providing emotional support, as is the role of spirituality.

Introduction 
Emotional support often is derived from a persons social support systems.  Research suggests that social support helps a person cope with stress and that supportive relationships may serve as a protective factor in various life situations.  Emotional support has also been found to be a factor that may protect against unhealthy outcomes such as heart disease, complications of pregnancy, and depression.  Objective 6.5 calls for parity in reporting emotional support between people with and without disabilities.  Achievement of this objective should reduce health disparities between these populations and improve the quality of life for people with disabilities.  Through monitoring the personal perspective, the US may better address policy and programmatic efforts that reinforce and enhance the social supports available to people with disabilities.

We wish to clarify that this objective relates to the social-emotional support, community access, and social participation of individuals with disabilities.  Therefore, see also the workgroup reports for the HP 2010 Chapter 6 objectives related to community access: Objectives 6.4 (Social participation) and 6.12 (Environmental barriers).

In addition to physical environment, another crucial area for examining emotional support is the communication environment.  The burgeoning technologies that now allow communication via interactive means, such as cyber-support groups, must be included and investigated for accessibility, usability, and availability.  Investigational research on these technologies should incorporate issues relevant to people with disabilities.  

Accommodating such a reorientation would encompass issues of family support, caregiver needs, independent living, personal stress reductions, community-based participation, and spirituality.

It was our opinion that national data sets serve mostly as beacons of social conditions rather than attempting to be true research instruments.  That is, although these data instruments can be modified to increase sensitivity to these dimensions, as they exist, they should not be relied upon as a sole source in monitoring.  These instruments currently could only hope to measure social inclusion or social integration status on the broadest of levels?that is, by prevalence.  Thus, these instruments could beacon a possible trend, but they could not replace cause and effect investigations.  

1. How practical are the targeted objectives for implementation by the year 2010?

This is a practical objective that is measurable through BRFSS.  However, implementation of this objective would entail dramatic changes in the supports available to people with disabilities and their caregivers.  In addition, implementation of this objective would require significant financial resources.  Implementation may be costly due to the recognition that emotional support is a community-wide phenomenon.  Emotional support could be viewed as an actual rationale for the formation of communities.  Yet, it would be a major program effort for a community to recognize that for some of their members?that is, people with disabilities?isolation or being ostracized might be the reasons that emotional support, social inclusion, or social integration were not being achieved.  To attempt to ameliorate these attitudes or circumstances would add further to the cost of these endeavors.

2. What are the major problems in addressing this objective?

A. Financial resources will be required to 1) implement both program services, and 2) evaluate social supports including the expansion of BRFSS with other more sensitive and program-specific measures.

B. Disparity issues related to disability are complex.  People with disabilities, like other groups that have been historically disadvantaged, have higher rates of unemployment, lower incomes, and lower educational attainment than the general population of adults.  Although the Americans with Disabilities Act (ADA) was created to address many of the barriers to participation in society, full implementation has not been realized.

C. People with disabilities often encounter significant structural, financial, and personal barriers that limit their access to and use of support programs and services.  Accessibility and usability barriers may be further compounded for individuals with disabilities who are poor; elderly; are members of racial, ethnic, cultural or linguistic minority groups; or who live in rural areas.  Like other high-risk minority populations, the characteristics, and social and emotional needs and experiences, of different segments of the disability community must be taken into account in crafting effective interventions.  In some cases, new strategies will need to be adapted or developed, particularly to address the physical, attitudinal, and educational accessibility and usability of programs and services.

D. This definition must be sensitive to diversities of culture, ethnicity, gender, age, and sexual orientation such that people with or without disability (as a group) who are experiencing decreasing social integration, can be appropriately monitored.  

E. Implementation will require creating and identifying data beacons within national instruments to identify decreasing social interactions among target populations within community settings (see Objective 6.1).  

F. For any initiatives to resolve the social isolation of people with disabilities, and in order to garner broad-based public understanding and support, it will be important to address the media.  The NIDRR-funded project Accessible Society Action Project offers one model of increasing media awareness of disabilities.

3. Who are the governmental, nongovernmental, private and other Consortium members who could/should be partners in implementing this objective?

A. Coalition of agencies 
To implement this objective, it is important to develop a coalition of agencies to assess and address the inherent problems, and to develop a blueprint to accomplish parity.  We suggest that involved partners also devise methods of increasing emotional support within the family unit, and among family caregivers and other caregivers, for the purposes of peer support and religious/spiritual support.  Activity management will vary at federal, state, or local levels (i.e., government, nongovernment, private, and commercial levels).  Certain federal and state groups and organizations, which act as enabling powers, will need to allow local activities to be designed to address these social integration issues.  Developing social integration programs may take considerable time, and thus may not easily stay up-to-date with the evolving needs of people with disabilities.  

B. Potential partners in eliminating disparities and focusing on social and emotional support
1. Government partners would include public health offices (at all levels); all population-centered agencies; all other agencies involved with societal support, assistance, and services for citizens (such as social services, education, labor, transportation, etc.). 
2. Nongovernment partners would include the Centers for Independent Living (CILs); disability advocates including affiliates of national organizations and singular advocates, and target-population (minority and cultural diversity) advocates; insurance carriers; and commercial enterprises (such as retailers, the food and beverage industries, and entertainment groups).  
3. Private partners would include employers; social recreation and fitness programs and agencies; churches/faith-based communities; foundations; and the media. 

C. Recommendations for partners  
We recommend including the following groups as the core of this partnership initiative.

1. The public health community, including national, state, and community programs across the spectrum of services (i.e., chronic disease, children with special health care needs, womens health, developmental disabilities services, etc.).
2. Centers for Independent Living (CILs) and other disability advocacy and service organizations 
3. Private partners and faith-based communities
4. The academic community, i.e., colleges and universities 

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?

Transitional programming will need to be outlined to assist people with disabilities who are moving between and through life stages, particularly adolescence and the aging process.  It will be necessary to devise surveys and reporting measurements that are responsive to the breadth and diversity of a definition of social-emotional support.  

The life-stage transitions that are experienced by community members, regardless of the presence of a disability, are key points for prevention programming.  These transitions include progressions through the educational system, stages of puberty, employment stages, marital stages, parental stages, etc.  With the lack of role models (including cultural role models) for people with disabilities, these transition sites may not be negotiated successfully and thus may result in a decrease of emotional support and social integration or inclusion.  

Programs that would promote social-emotional support and community participation include the following:

A. Disability awareness activities targeted to the Media and communities

B. Initiatives to improve accessibility and usability of both the physical and communication environments, and that promote universal design in both.

C. Programs that develop and expand Personal Assistance Services (PAS).  These are a range of services that address the needs of some people with disabilities, and that can be obtained in many ways including with government funding.  Expansion of PAS would allow people with disabilities to participate fully in the community, for example, in attending and participating in faith communities; social functions; and family, leisure, and recreational activities.  

D. Programs that expand Respite Care Services (RCS)?again, a range of services (see #3 above) that provide support to people with disabilities and their caregivers?will also facilitate attending and participating in faith communities; social functions; and family, leisure, and recreational activities.  

E. Programs that address other government disincentives to community inclusion and gainful employment (such as Medicare homebound restriction).

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?   

The annual BRFSS disability module, the baseline for this objective, will track progress in meeting the targeted goals in the 11 states that currently use the disability module.  Work and funds will be required to institute the use of these questions (the disability screener questions, and emotional and social support questions) in BRFSS of all 50 states.


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch (DHB) have concluded an agreement by which data to measure this objective is included in BRFSS National Health Interview Survey supplement during 2001.  New baseline data will be available in 2002.  


C. Concern
While BRFSS and NHIS will measure self-perception, more sensitive and comprehensive measures must be devised to determine how best to meet this need and measure program effectiveness.



Objective 6.6 Workgroup

Increase the proportion of adults with disabilities reporting satisfaction with life 

Introduction
As it is with building a road, if any section is incomplete, it is hard to arrive at ones destination.  Likewise, without achievement of most of the other HP 2010 Chapter 6 and related objectives, the life satisfaction objective cannot be reached.  Life satisfaction is a composite picture of how well we are doing with Chapter 6 objectives.  We feel that Life Satisfaction (LS) is a cumulative index, perhaps even more than the sum of its parts.  Life satisfaction is closely related to Quality of Life (QOL), another broad term.  Although there are probably technical differences between these terms, we are choosing to use them interchangeably in this report.

Assumptions
Before addressing the responses to the five questions asked of all workgroups, several general issues need to be viewed as a backdrop for life satisfaction.  
A. Research has shown that people without disabilities project lower QOL for people with disabilities?lower than people with disabilities rate their own QOL.  This presumption affects the way that people without disabilities perceive and interact with people with disabilities.  Furthermore, the self-fulfilling prophecy takes place whereby people with disabilities may lower their self-concept, thereby undermining self-rated satisfaction with life.
B. Poverty and education were also suggested as significant factors that affect life satisfaction.  Studies indicate that people with disabilities are more likely to be poor and have less education than people without disabilities; these circumstances undermine satisfaction with life.  
C. Trends show an aging population, and while staying fit as you age is becoming popular, the sheer number of older people living longer points to more people who are experiencing disabilities.  This large segment of the US population will likely respond to the current inaccessible environment in the form of decreased population satisfaction with life.  The 2000 Harris Survey1 demonstrates this by reporting life satisfaction by age.  The overall gap in reported life satisfaction between people with (33%) and without (67%) disabilities is 34 percentage points.  However among 18-29 year olds, the gap is only 13 percentage points.  
D. The Harris Survey1 indicated that 41% of people with disabilities expect their lives to get better over the next 4 years as compared with 76% of people without disabilities.  This QOL projection differs by age group, but will certainly correlate with life satisfaction reports.

1.  How practical are the targeted goals for implementation by the year 2010?

We feel that gaining parity of reported life satisfaction between people with and without disabilities (96%) by 2010 will be difficult to achieve.  We believe that there are substantial societal changes that must be made, and that society is not ready to change that quickly.  This is a long-term goal that is and will be affected by education and work environments, societal attitudes, assistive technology, environmental barriers, emotional support, and other topics for objectives within Chapter 6.  These objectives represent many of the factors that contribute to life satisfaction.  Because many disability policy issues have been languishing for 25 years, it is difficult to estimate what a reasonable goal would be for the next 10 years.  It is, however, a matter of social justice that parity be the goal of the objective so that attention is continually drawn to the need.

2. What are the major problems in addressing this objective?

1. Data are a problem when tracking this objective.  There is a lack of consensus on what constitutes life satisfaction and the best tools to measure LS for people with or without disabilities.  
2. There are also inadequate resources for collecting accurate data, particularly at the local level; this is a universal problem with surveillance data.   


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch (DHB) have concluded an agreement by which data to measure this objective is included in BRFSS National Health Interview Survey supplement during 2001.  New baseline data will be available in 2002.  


3. There may well be differences across disability groups, such as those pertaining to congenital versus acquired disabilities, mobility versus mental health disability, or differences by culture or age cohorts. 
4. Societal attitudes toward disability and the medias presentation of disability contribute to conflicting and generally negative messages about disability and people with disabilities.  Evidence of this feeling of shame is also present in other countries. 
5. Cultures, as well as systems within cultures, such as organized religion, politics, etc., contribute to an atmosphere of disapproval of disability that may lead to a reduction in life satisfaction.  It must be remembered that systems are created for the greater good as opposed to individual good. 
6. Cultural differences also need to be taken into account.  For example, life satisfaction for individuals with disabilities who belong to ethnic groups, such as Native Americans and Alaskan Natives, is challenging due to even greater lack of resources on reservations and in villages.
7. Education: Because resources for complete implementation have not been forthcoming, the education system has not been able to implement the Individuals with Disabilities Education Act (IDEA).
8. Transportation: There continue to be significant problems in obtaining access to and use of affordable and accessible transportation both within and between communities.  This service also contributes to participation and positive life satisfaction.

3. Who are the governmental, nongovernmental, private and other Consortium members who could/should be partners in implementing this objective?  

A. Governmental partners 
1. DOE, OSERS, Rehabilitation Services Administration (RSA), and NIDRR officials
2. Federal Interagency Committee on Disability Research 
3. Department of Labor
4. DHHS and the Office of Disability and Health/CDC officials and researchers
5. NCD
6. State directors of education
7. State directors of public health
8. State directors of employment
9. State directors of vocational rehabilitation
10. State directors of community mental health
11. SILCs
12. HUD
13. DOT
14. Surgeon Generals Office
15.  Office of Disease Prevention and Health Promotion (ODPHP)
16. DOJ
17. HCFA
18. SSA
19. NCIL
20. APRIL

B. Nongovernmental partners 
1. NOD
2. Washington Business Group on Health (WBGH)
3. CARF
4. JCAHO
5. CCD
6. American Association of People with Disabilities (AAPD)
7. Disability Rights Education and Defense Fund (DREDF)
8. AARP
9. Families USA
10. American Public Health Association (APHA)
11. State Independent Living Councils (SILCs)

C. Private partners 
1. Employers
2. Insurance companies
3. Managed care organizations (MCOs)
4. Academic institutions
5. Foundations (e.g., Robert Wood Johnson Foundation)
6. The media
7. Internet E-health companies (e.g., WebMD)
8. Computer and technology firms (e.g., Microsoft)
9. Entertainment industry (movies, TV, etc.)
10. Advertising agencies
11. Advocacy organizations
12. Corporations (e.g., AOL-Time Warner, Sony)
4.  What are the initial programs, current or envisioned, and/or policies that could help meet this objective?

Professional training programs in health care, journalism, and education should implement courses to enable their students to reassess their biases toward individuals with disabilities.  The definition of and attitudes about disability are currently limited to the medical model.  Training programs do not customarily provide a thorough and balanced look at individuals with disability.  

A. National programs and policies
We recommend that the following programs and policies be undertaken at the national level:

1. Governmental
a. Conference: Conduct a national conference to develop research-based consensus on a definition of Life Satisfaction and identify factors contributing to positive LS along with recommendations for measurement.  
b. Legislation: Work for passage of the legislation to increase programs for health and disability.
c. Legislation: Work for passage of Medicaid Community Attendant and Support Services Act (MiCASSA) legislation that permits Medicaid coverage for a longer period while a person is working.

2. Nongovernmental
a. Program policy: Encourage CARF, JCAHO, and the other accreditation organizations to include specific standards regarding the tracking of life satisfaction in existing program evaluation and quality assurance tools.  The AHRQs Consumer Assessment of Health Plans (CAHPS), and the CAHPS-PWMI (People with Mobility Impairments), produced in collaboration with NIDRR and the National Rehabilitation Hospital Center for Health and Disability Research (NRHCHDR), are good examples of this.
b. Legislative and program policy: Develop resources to assist local communities in identifying new, and addressing known, factors that affect life satisfaction. 

B. Community-based/Local programs and policies
The issues are similar to those mentioned above, but they concern activities at the local level.

C. General program and policy recommendations  
1. Work toward raising the expectations of people with disabilities.  Those with disabilities need to expect the same things as those without disabilities, including the means for ongoing personal development; that is: (1) find your identity, (2) strive to physically separate from your parents, (3) actively search for social supports and a peer group with which you can relate, (4) find sources of love and passion that come from inside yourself as well as sources in environment, and (5) seek and secure a vocation for economic independence.  As a caveat, we must also recognize that personal needs might mean that there are different schedules in the rites of passage and although we may monitor such passages for individuals, there is no intent to proffer blame for being unable to meet the expectations of a prescribed time or sequence for such passages. 

2. Fund and undertake a real evaluation of the health care system and what the incentives are, or should be, in the programs to include people with disabilities.

3. Establish a program that addresses the question: What do you want to be when you grow up?  If we begin to ask children with disabilities?in a consistent way and as soon as they can understand that concept (that is, from toddler age on up)?what they want to be when they grow up, and give kids an opportunity to play at being grown up, this will help children with disabilities to distinguish any feelings they may have of being limited in their aspirations and resources.

4. Recognize that individuals who have acquired a disability have significant identity issues with which they may need to grapple; they have gone through an extremely personal identity change.  This is not currently recognized by the medical system as a critical component of rehabilitation.  In addition, research must be conducted to show the impact of this type of counseling or peer support groups, and a health insurance policy addressing adequate reimbursement for this service.  

5. The Federal government should track people with disabilities as a separate culture and demographic variable.

6. While students with disabilities are in high school, they need to look at employment needs (or other such transition plans).  The Healthy and Ready to Work document covers this need.  A critical issue is the existence of bias.  Transition issues have been overseen by the Department of Education and data are available (e.g., among youth with disabilities who had been out of high school 3 to 5 years, 27% had ever enrolled in postsecondary school, compared with 68% of youth in the general population.  The employment rate for youth with disabilities is reported to be 57% compared to 69% in those without disabilities).2  

7. Identify means to bring constituents, providers, and the public together, either through mediation or via face-to-face meetings, to resolve issues of distrust.  There is a lot of distrust at the local level between the different groups and everyone needs to come together to reach solutions.  Hiring facilitators would work to implement more objectivity and would better provide an assurance of listening and working side-by-side.  However, for American Indian communities, meeting face-to-face would work well at the local level.  For instance, the Talking Circle format aims to permit dialogue around issues such as distrust or respect that may be present.  

8. We recommend John Bachs article on the approach of using positive affect in end-stage ALS3 be included on quality of life scores.  Dr. Bachs work revolves around treatment and management that employ less invasive procedures and interventions.  

9. Encourage people with disabilities to enter the journalism, education, and health care professions and provide incentives to students in journalism, education, and health care to pursue education on issues regarding disability.
10. Address discrimination in the selection processes used in certain graduate degree programs (i.e., such as the medical doctorate and education doctorate).

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals? 

Our consensus is that adequate mechanisms are not currently in place for tracking progress with this objective.  While BRFSS question is currently used, consideration should be given to the limits of BRFSS, including use of the telephone that curtails input from hearing-impaired and mobility-impaired people.  The BRFSS, however, does collect information directly from the person with disability, without using a proxy.  The BRFSS, however, does collect information directly from the person with disability, without using a proxy.  Including the new question in the National Health Interview Survey Supplement in 2001 is another good opportunity for data collection; however, there are still difficulties.  NHIS collects data about all households and allows information about children, but it also allows proxy responses.  An important tracking mechanism might be to compare life satisfaction across cities according to how much they have implemented the ADA.  Seattle, Boston, Washington, DC, and Las Vegas are all examples of proactively changing cities.

As indicated at the beginning of the Objective 6.6 report, to the extent that other relevant objectives within this chapter and other Healthy People chapters are being met, satisfaction of life should increase overall.  

REFERENCES

1. Harris L. 2000 NOD/Harris Survey of Americans with Disabilities. New York: Harris Interactive, Inc; 2000.  

2. Wagner M, Blackorby J, Cameto R, Hebbeler K, Neuman L. The transition experiences of young people with disabilities: a summary of findings from the National Longitudinal Transition Study of Special Education Students. Menlo Park, CA: SRI International; 1993.

3. Bach JR. Guide to the Evaluation and Management of Neuromuscular Disease. Philadelphia: Hanley & Belfus; 1999.

4. Field MJ, Lorh KN, Yordy KD, eds. Assessing Health Care Reform. Committee on Assessing Health Care Reform Proposals, Institute of Medicine; 1993.



Objective 6.7 Workgroup

Reduce the number of people with disabilities in congregate care facilities, consistent with permanency planning principles

Objective 6.7a. Reduce by 50% the number of adults aged 18-64 years in congregate care facilities

Objective 6.7b. Reduce to zero the number of children aged 17 years or younger living in congregate care facilities.  

Definition of congregate care: Settings in which children or adults with disabilities live in a group of four or more people with disabilities, in order to receive needed supports and services.

Introduction 
Institutions and other forms of congregate care are inconsistent with positive public health policy and practice.  They diminish peoples opportunities to realize the essential features of human well-being: choice, control, ability to establish and pursue personal goals, family and community interaction, privacy, freedom of association, and the respect of others.  The goal, therefore, is to increase the number of people in noncongregate family and community settings where the services and supports they need are made available.

Congregate placements for children should be ended within the decade, if not sooner, consistent with the Statement in Support of Families and Their Children.1  Permanency planning means that both state and federal policies affirm the principle that all children, regardless of disability, belong with families and need enduring relationships with adults.  Permanency planning also means that state budgets should commit the necessary resources to support children with disabilities and their families.2,34  Permanency planning for children is initially family-directed; however, the planning process must become increasingly person-directed as a child matures and transitions into adulthood.
      
Congregate placements for adults should be reduced by 50%.  For adults with disabilities presently residing in congregate care settings, state and federal government policies must also affirm the need for community-based alternatives.  This should be accomplished by effectively funding community alternatives such as the Medicaid Home and Community Based Services (HCBS) Waiver Program, and other individualized services and supports for people with disabilities and their families.  States should develop mechanisms for conducting person-directed planning for adults with disabilities.  To avoid institutionalization, careful family and person-directed planning, and adequate community supports, must be in place for transitioning children with disabilities to adulthood.

1. How practical are the targeted goals for implementation by the year 2010?

These objectives are achievable if and only if it is the will of federal, state, and local governments, and of the private sector to provide the resources needed, and to structure policies and programs necessary to support families and individuals.  There is legislation (though not fully implemented), to support the goal and there have been prior successful efforts towards deinstitutionalization, notably mass closing of large institutions across the US and reduced numbers of children in large care settings.

For people with developmental disabilities, data on the extent of congregate care utilization are currently available.3,4  In 1998 in the United States, a total of 92,231 children and adults with developmental disabilities were served in settings for three or fewer people.  This number constituted 22% of the total 416,717 people served in all out-of-home placements, ranging from state institutions and nursing homes to supported living, personal assistance, and individualized foster homes.

The number of people served in 1998 in congregate settings for four or more people (324,486) represented a placement prevalence of 121 per 100,000 of the United States general population.  Given projected increases in the US general population, a 50% reduction in this number is 54 per 100,000 in 2010.

With regard to people with physical and mental health conditions, statistics will soon be available from analyses of the Minimum Data Set on all nursing home residents.  Baseline statistics from this national data set, with individual records for all nursing home residents, will be available early in 2001.

Policies and reimbursement programs must recognize that nonpaid relatives, primarily women, bear the large majority of the responsibility for caregiving in the United States.  Family caregivers have major unmet needs that will only increase as the population ages.

There are currently seven states (Alabama, Arizona, Georgia, Maryland, Nevada, New Mexico, and Washington) that have congregate (4+ people) placement prevalence at or below the national average.  These states, and a number of other states in which congregate placement prevalence for children are quite low (i.e., Alaska, Kansas, Maine, New Hampshire, Rhode Island, Vermont, and Wisconsin) should be able to achieve one or both objectives.

2. What are the major problems in addressing this objective?

A. Disparities in commitment of states
Wide variations exist among the states in social and policy commitments to develop family support and community services, motivation to change, and information about what can and should be accomplished.  States also vary in the levels of resources they commit to family support and community services.

B. Disparities in commitment of community services
Disparities exist in expectations and commitment to community services among different disability groups (and industries), especially care and services for seniors.

C. Disparities in financial resources  
We have not made the long-term financial commitment to the long-term care needs of Americans.  We do not know what the future needs will be, what it will cost to meet those needs, nor the origin of resources.  Recently available data show that an estimated 9.4 million adults, ages 18 and over, need hands-on assistance to carry out either instrumental activities of daily living (IADLs)?chores such as shopping and housework?or for the more basic activities of daily living (ADLs), such as bathing and dressing.  Roughly 79% of these people live at home or elsewhere in the community rather than in institutions, and almost half are under 65 years of age.5  Large numbers of these adults will require increased support as both they and their family caregivers age. 

D. Service gaps
1. There are tens of thousands of families and individuals who are eligible, but still waiting, for support.  There are people who have been authorized for support but who are not getting what they are authorized to receive.  

2. Given the options, people often feel they do not have the right to request the services they need in the places they want to live. 

3. There are significant personnel recruitment/retention difficulties for attendants, personal assistants, in-home support staff, and direct support staff; this limits the capacity to develop and maintain community and family services.

4. There are few, if any, transition programs.

5. There is an imbalance in outflow and influx.  When residents leave or relocate, and others are admitted, beds fill as soon as there are vacancies.  Waiting lists testify to the need for community support.

E. Governmental policies
1. There is a lack of federal incentives for family and community versus institutional services.  Why is the matching rate in Medicaid the same for institutions as for the Medicaid Home and Community Based Services (HCBS) Waiver?  Why not use a Federal Medical Assistance Percentage (FMAP) rate incentive like that used with the Childrens Health Insurance Program (CHIP)?

2. There is a severe shortage of the affordable, accessible and usable housing that people with disabilities require in order to live in noncongregate arrangements.

3. Government policies and funding do not effectively provide for adequate numbers of self-directed personal assistants.  Various policy changes are needed to increase personal assistance.  

4. Funding and policy changes are needed to supply assistive technology devices and services.

5. Health care policy still remains oriented to acute care.  Too often this means that the accepted outcome is either a cure or death, without the necessary emphasis on meeting the nonmedical needs of people with disabilities.  If personal and environmental factors are to be considered as co-equal determinants of disability, then home, work, and community environmental access surveys need to be paid for via some mechanism other than the health care insurance and reimbursement systems. 

6. Many state systems for adoption and foster care are often linked to childrens protective services, which can lead to abuse/neglect stereotyping.

3. Who are the government, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?

A. The federal Health Care Financing Administration (HCFA) and other US Department of Health and Human Services (DHHS) offices, divisions, or programs need to play a proactive role in promoting community services using various existing and potential new planning and family requirements (e.g., plans based on the Olmstead decision of the US Supreme Court).

B. Other partners include federal, state and local Head Start, Early Childhood Intervention, and IDEA (Individuals with Disabilities Education Act) personnel.

C. The Congress and the Administration need to create incentives to move people from congregate care settings to community and family services.

D. Under the leadership of national organizations such as the National Governors Association (NGA), efforts should be undertaken to bring state program agencies (e.g., Medicaid, aging, mental health, developmental disabilities, children and family services, rehabilitation services) into coordinated activity to establish ongoing statistical indicator programs.
E. Centers for Independent Living (CILs), American Disabled for Attendant Programs Today (ADAPT), Family Voices, parents, The Arc (formerly The Association for Retarded Citizens), the American Association for Retired People (AARP), and others.  These organizations need to work together to promote noncongregate, in-home supports for all groups, and to include specific goals such as support for the Medicaid Community Attendant and Support Services Act (MiCASSA).  In addition, they must work toward general goals such as building a powerful disability constituency in order to influence politics and policies.

F. State Technology Act Projects and the Association of Technology Act Projects (ATAP) are aware of policy and community service barriers to getting the assistive technology needs met for people with disabilities living in the community.  These groups also have their own partnerships. 

G. The US Department of Housing and Urban Development (HUD), and Health Care Financing Administration (HCFA), need to work together to ensure the integration of affordable, accessible and usable housing, and access and use with community supports.

H. Title V (Children with Special Needs), MCHB (Maternal and Child Health Bureau), and other federal, state and local agencies, other partners such as the Developmental Disabilities (DD) Councils, National Council on Disability, University Affiliated Programs (UAPs), as well as others need to work together on promoting and successfully achieving permanency planning objectives and outcomes, and meeting the person-directed outcomes for adults.

I. Government agencies, as well as other agencies, need to ensure that people with disabilities are partners with continuous presence in policy-making and evaluation efforts.

J. Faith-based communities are also needed partners. 

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?  

A. Family support and permanency planning
1. Adopt permanency-planning principles for children and person-directed planning for adults in legislation, program policies, and procedures.  

2. Some states have developed road maps to show how to achieve important community- and family-support objectives (e.g., Michigan worked effectively to have no children residing in congregate care; the Childrens Long-term Care Policy Council was created in Texas6).  We need to highlight state and local progress in important areas and have these leaders provide technical assistance to other states and communities that have further to go.

3. Provide training, show how to shift the funds, and continue to develop the collective willingness to follow the road map.

4. State Title V annual reports should be required to report annually on progress in the states regarding permanency-planning objectives.  The steps taken in each state to promote permanency-planning principles, including deinstitutionalization, should be reported.

B. Community infrastructure
1. Reducing and preventing institutionalization and promoting community integration
a. Studies on reducing congregate care provide valuable advice on careful deinstitutionalization planning.  Funding agencies should study the characteristics, actions, policies, organizational structure, and financing of leader states and communities and the ways those elements can be replicated.

b. Ensure that dollars are attached to people, not to beds or programs, such that people with disabilities and those they trust (including family members, neighbors, friends, and service providers) control resources.

c. Government, and people with disabilities and their allies, must be partners in changing the general social culture so that the general population increasingly views people with disabilities as full and valued members.

d. The federal government should commit to a policy of people being able to age in place such that services come to people rather than making people move to where the services are provided.  This policy and principle is established in research literature on aging, and should also benefit people with disabilities as they age.

2. Effectively assessing needs
a. Identify a core set of data descriptive of the resources, programs, and policies affecting long term care and support that would guide the Healthy People 2010 objectives.

b. Consider existing state and national data sets.

c. Identify states that are exemplary in terms of 1) resource allocation, 2) developing programs and policies that promote permanency planning and individual and family support, and 3) having data sets descriptive of these systems of services.

d. Make recommendations regarding the elements of common data sets and how exemplary states have maintained such data sets.

e. Determine the possibility for and costs of a national annual reporting system of key indicators of needs (i.e., resources and people).

f. The nation must develop the long-term financial commitment to funding long-term care, especially because aging baby boomers?both people with disabilities and caregivers?have needs that will dramatically increase in the years ahead.

3. Providing an appropriate array of housing, services, and supports
a. Any individual with a disability, or family that includes a person with a disability, who is eligible for family or community support, is entitled to and should receive those supports within a reasonable period (90 days).

b. Provide wider opportunities for individuals and families to use programs that support community and family living, including, but not limited to:
* Personal care options and other types of personal assistance and supported living
* Supported employment
* In-home support to families, respite care, and specialized day care
* Alternative family arrangements (shared parenting)
* Specialized foster care (supporting the concepts of permanency planning)
* Behavioral support and crisis response
* Accessible, usable, and affordable health care, health promotion, and
 	prevention
* Individual service coordination (independent case management)
* Transition planning and supports
* Assistive technology supports
* Training for foster care

c. Dramatically increase the amount of affordable, accessible and usable housing and assistance with housing modifications and equipment. 

d. Work to better understand and enforce accessibility laws consistent with ADA throughout the US. 

4. Financing community services
a. Federal and state governments must identify and remove existing disincentives to family and community living (e.g., losing health care coverage when you work a real job?i.e., the recently passed Work Incentive Act). 

b. The federal government should establish relative incentives for family and community support as compared with institutional services (i.e., enhanced FMAP rates, as implemented in CHIP). 

c. Federal and state governments must develop commitments and policies to ensure an adequate workforce: 1) adequate pay and benefits, 2) recruitment, and 3) training. 

d. The CDC should work with SSA on the implementation of The Ticket to Work and Work Incentives Improvement Act of 1999, and other incentives to achieve full, productive, integrated community lives.

e. Federal agencies should coordinate efforts to see that all funding programs, policies, and procedures effectively promote integrated community services and supports that promote maximum use.

f. Voucher programs should be considered to attach dollars to people, not beds.

5. Are adequate mechanisms in place for tracking progress toward meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

A. Individual records on all Medicaid- and Medicare-certified nursing-home residents, now available from the federal HCFA, will track numbers of children and adults with disabilities in nursing facilities.
B. Developmental Disabilities (DD) data sets are available from the University of Minnesota and, as of August 2001, the University of Colorado.
C. There is a need for ongoing measurement and improvement of the extent of accessibility and usability of places where people live and participate in community life.
D. State Title V annual reports should be required to report annually on progress in the states regarding permanency-planning objectives.  The steps taken in each state to promote permanency-planning principles, including deinstitutionalization, should be reported.
E. State Medicaid, DD, and agencies including those for mental health, aging, rehabilitation, education, and children and family service, should work together in each state to track progress toward meeting these objectives.
F. Develop the HP2010 template for data collection (e.g., age categories, sex, level of schooling, and race/ethnicity)

REFERENCES

1. Center on Human Policy. Families for all children. Syracuse, NY: Syracuse University, Center on Human Policy, Community Integration Project and Research and Training Center on Community Integration; 1987.

2. Rosenau N. Do we really mean families for all children? Permanency planning for children with developmental disabilities (Policy Research Brief). Minneapolis, Minn: University of Minnesota, Research and Training Center on Community Living; 2000.

3. Braddock D, Hemp R, Parish S, Rizzolo MC. The state of the states in developmental disabilities: 2000 study summary. Chicago: University of Illinois at Chicago, Department of Disability and Human Development; 2000.

4. Prouty R, Lakin KC. Residential services for people with developmental disabilities: Status and trends through 1998. Minneapolis, Minn: University of Minnesota, Research and Training Center on Community Living; 1999.

5. Spector WD. Long-term care users range in age and most do not live in nursing homes. Rockville, MD: Agency for Healthcare Research and Quality; 2000.

6. Childrens Long-term Care Policy Council. Moving to a system of supports for children and families. Austin, Tex: Texas Health and Human Services Commission; 2000.

Objective 6.8 Workgroup

Eliminate disparities in employment rates between working-aged adults with and without disabilities

Introduction 
We strongly support intensifying efforts to move individuals with disabilities toward employment parity with other Americans.  Few of the Healthy People objectives hold greater promise for moving people with disabilities toward participation in the national economy and the mainstream of American life than Objective 6.8.  

Having said that, however, we strongly recommend that Objective 6.8 be construed more broadly in order to give an accurate accounting of the critical nature of unemployment, impoverishment, and dependency among people with disabilities in general, and among individuals with more significant disabilities in particular.  Three preliminary issues need to be addressed prior to discussing our specific recommendations.  These preliminary issues include: 1) how the baseline measure of employment rates for Objective 6.8 has been calculated; 2) how the baseline measure is currently defined in Objective 6.8; and 3) how the baseline measure should be defined in Objective 6.8.

The Baseline Employment Rate of Objective 6.8
The overall goal of Objective 6.8 is an employment rate of 82 % for people with disabilities.  The baseline measure is calculated using data from the US Bureau of the Census report Americans with Disabilities: 1994-95.1  The baseline employment rate for people with disabilities contained in Objective 6.8 is 52%.  This is the actual percentage of all people with disabilities who are employed. 

The Baseline Definition of Employment Rates
As noted above, achieving the overall goal of Objective 6.8 is based on 82% of people with disabilities being employed, as defined under SIPP.  Employment is defined broadly under the SIPP data source to include full, part-time, temporary, or any work that earned money during a 4-month time period.  We strongly urge that SIPP data be used to examine the rates of employment for people with and without disabilities by reporting on the three most critical elements of employment: 1) employment status (i.e., full-time or part-time, ongoing or intermittent employment, etc.); 2) income (i.e., wages earned over the SIPPs 4-month reporting period, annualized); and 3) benefits (e.g., health care, retirement, sick leave, vacation).  Because people with disabilities, and particularly those with significant disabilities, are also disproportionally employed in part-time, low-wage, and no-benefit jobs, SIPP data that only report on the overall percentages of people employed in any capacity over the previous 4 months distorts any measure of meaningful comparison between those with and without disabilities in regard to the fundamental goal of Healthy People 2010?that is, to maximize the quality and years of healthy life for people with disabilities.

A Modified Baseline Measure for Objective 6.8
In addition to an expansive definition of employment (rates, income, and benefit levels), it will remain crucial to ensure that data in these three categories are reported at all times by differentiating between people with less and more involved limitations.  It is important to acknowledge and report the substantial differences in employment between these two groups because of the far more significant challenges individuals with significant disabilities face in moving toward meaningful parity in employment with their nondisabled co-workers.

1. How practical is the targeted objective of eliminating employment disparities in employment rates between working-aged adults with and without disabilities for implementation by the year 2010?

Despite a history of excluding people with disabilities from the workforce, we believe the objective is practical based on several factors.  The target is an employment rate of 82% as opposed to a target of full employment.  Employment is defined broadly under the national data source (SIPP data) to include full, part-time, temporary, or any work that earned money during a 4-month time period.  The baseline employment rate contained in HP 2010 is set at 52%.  Given that the baseline measure uses a broad definition of employment (and that the population of people with nonsignificant disabilities is significantly larger than that of individuals with significant disabilities), the goal is more readily achievable since a significant percentage of people with disabilities meet the employed criterion already.  

2. What are the major problems in addressing this objective?

Barriers to reaching this objective have been grouped into three categories, including problems emerging from employers, systemic problems, and specific problems facing people with disabilities.  

A. Employers
1. Employers view people with disabilities as a homogenous category.  
2. Significant numbers of employers view people with disabilities negatively and may use evidence of disability from applications or visual impressions as a way to reject candidates.  
3. There is a relative lack of economic incentives to employers to hire people with disabilities (notwithstanding some incentives that may exist for tax credits and practicing good will, and government mandates to hire more people with disabilities).
4. Higher rates of health care and insurance utilization by people with disabilities create disincentives for employers (especially small business entities) to hire people with disabilities.
5. Many work, physical, and communication environments are inaccessible or unusable for people with disabilities.

B. Systemic problems
1. Employment issues for people with significant disabilities are more complex than those for people with nonsignificant disabilities.  There is a disproportionate number of people with significant disabilities who are unemployed.
2. Job re-entry after adult-aged onset of disability can be more complex than job transitions by people who have had chronic conditions since childhood.
3. Transition planning for youth to adult employment is often a low programmatic priority and underfunded.
4. Lack of knowledge about disability issues on the part of both workers compensation administrators and human resource personnel is problematic.
5. People with disabilities are diverted from work to welfare by workers compensation statutes and by employers who are downsizing.
6. A number of economic issues suppress employment opportunities.  That is, people with disabilities are laid off in disproportionate numbers in economic downturns.  This is because they often have had less work experience due to employment discrimination, and that leads to being subjects of the "last hired, first fired" phenomenon.  People with disabilities may also find themselves in marginalized jobs that are eliminated in economic downturns.
7. Vocational rehabilitation programs (governmental and nongovernmental) can be ineffective, in particular when they rely on part-time and sheltered employment as successful employment outcomes, steer people toward dead-end jobs, or address employment as a secondary goal.
8. There is a lack of fit between many education and training programs for people with disabilities and the nature of 21st century work generally.  
9. Appropriate assistive technology (AT) is not routinely a part of:
a.  K-12 educational programs such that it would better prepare students for college or work;
b. transition planning to answer the question: What work could students do if they had AT?;
c. independent living, so that people with disabilities can get ready to go to work; and
d. employment as a reasonable accommodation.

C. Specific problems facing people with disabilities
  
Many problems facing people with disabilities stem from systemic sources, as well.  There are ongoing efforts from many agencies and organizations, including NCD, HCFA, DOL, and SSA, to address these problems; examples of specific programs are those that ensure employee maintenance of health benefits and coverage, and the grants originating through the Ticket to Work and Work Incentives Improvement Act of 1999.  These efforts notwithstanding, some problems justify mentioning here:

1. Many people with disabilities lack basic educational opportunities.
2. Many people with disabilities who have access to and use of educational programs receive skills and training that do not match available jobs.  
3. People with disabilities often have a lower income than others because of part-time, low pay-scale jobs.
4. A person with disabilities in the same job as someone without a disability may be paid less. 
5. There is inadequate support to people with disabilities alleging employment discrimination under ADA.  
6. People with disabilities also face discrimination based on minority and gender status.
7. Many people with disabilities fear losing their health insurance if they return to employment after a stretch of time.
8. Significant percentages of people with disabilities are at risk for poor health as a result of exclusion from health-maintenance programs and other factors.
9. Many employment opportunities lack health-care or other health-support services.  
10. People with disabilities may lack the social skills to hold or be successful at jobs. 

3. Who are the governmental, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?

Many organizations and agencies could take an active role in helping achieve this objective.  

A. At the federal level, the Departments of Labor, Education (OSERS; NIDRR), Health and Human Services, and Transportation, Justice; NCD; the Equal Opportunity Commission (EOC); SSA, SBA, VA, Indian Health Services (IHS), Bureau of Indian Affairs (BIA), and Congress (including staffers). 

B. In the individual states, partners include the Vocational Rehabilitation (VR), Disability or Human Services, Medicaid, and the various health departments and divisions.  

C. In nongovernmental organizations, CARF, special education technology (SET), the National Association of State and Territorial Health Officers (NASTHO), National Association of City and County Health Officers (NACCHO), National Association of State Health Programs, National Education Association (NEA), AARP, American Management Association, Chambers of Commerce, American Academy of Actuaries, the Council of State Administrators of Vocational Rehabilitation (CSAVR), and State Technology Act Projects and the Association of Technology Act Projects (ATAP).  

D. Consumer and family organizations include The Arc, People First, and CCD, APRIL, and NCIL.  

E. Others partners would be the Welfare to Work System (federal and state).

F. Foundations such as Robert Wood Johnson, Pew Charitable Trust, Kaiser Permanente Community Foundation, and Henry K. Kaiser Family Foundation.  

4. What are initial programs, current or envisioned, and/or policies that could help meet the objective?

A number of task forces and blue ribbon panels2 have examined mechanisms for increasing employment opportunities for people with disabilities.  Each of those reports and recommendations should be reviewed for applicability to Objective 6.8.  Opportunities that could help meet this objective as identified by the work group have been divided into four categories: employers, people with disabilities, federal initiatives, and the insurance sector.  

A. Employers
1. Provide to employers educational programs that range from an introduction about disability to programs on how to provide reasonable accommodations (e.g., via brochures, American Management Association courses, Certified Employee Benefits Specialist courses).
2. Provide economic incentives to businesses (i.e., tax credits, to encourage them to hire people with disabilities).
3. Establish a stronger mandate to comply with ADA.  

B. People with disabilities
1. Increase vocational, secondary, and post-secondary educational opportunities through an incentive program for both people with disabilities and educational or training institutions.
2. Restructure vocational rehabilitation programs to emphasize preparing individuals for 21st century jobs.  
3. Increase substantial gainful employment allowance (SGA) and allow accumulation of wealth/savings to the poverty income level; SGA is a key phrase in SSA legislation that limits what people who are on social security disability income (SSDI) and social security insurance (SSI) can earn before being removed from SSA programs. 
4. Eliminate disincentives to work by maintaining Medicaid/Medicare coverage under employment.
5. Obtain educational opportunities and support from ADA enforcement.  
6. Increase access to and use of transportation.
7. Revisit the concept of health care for people with disabilities as a program of equity.

C. Federal government
1. Perform surveillance: Use data to monitor 1) the employment, income, and benefit levels of people with disabilities, including those with significant disabilities who have higher risks for unemployment and underemployment (such as people with mental illness); and 2) disability and employment by race, ethnicity, gender, and education.
2. Increase enforcement of ADA.  
3. Develop a support system during difficult economic times; i.e., a system to protect people with disabilities from job loss when the economy contracts.
4. Teach job and social skills as part of education programs. 

D. Insurance sector 
1. Develop model state legislation through the National Association of Insurance Commissioners (NAIC).
2. Integrate health benefits and carve-outs with workers compensation, SSDI, and SSI.
3. Expand the notion of restorative therapy to the fuller concept of maintenance therapy (as a medical necessity).
4. Provide small-group reinsurance for high-risk individual employees and the self-employed. (Note: Reinsurance is a practice common in the workers compensation field.  It is, in effect, the insurance of insurance, whereby one insurance company, which has risks that it deems too large to carry, insures that risk with another company). 

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

To track progress, comparisons need to be made between SIPP employment, income, and benefit level data for people without disabilities and people with significant and nonsignificant disabilities, including those with significant disabilities who have higher risks for unemployment (such as people with mental illness).  Comparisons also need to be made by race, ethnicity, gender, and education.  In addition, SIPP data should be compared to BRFSS data on employment, income, and benefit level between people without disabilities and people with significant and nonsignificant disabilities, and by race, ethnicity, gender, and education (see Objective 6.1). 

Other federal surveys, such as the Bureau of the Census Current Population Survey (CPS), conducted in March 2001, may ask the right questions, but the sampling process results in statistically insignificant numbers of people who have moderate and significant disabilities.  The small numbers preclude decision-makers from being able to analyze employment rates at levels other than nationwide.  More meaningful analyses could be drawn in the data that are collected and reported at statewide or even major metropolitan statistical area (MSA) levels.  BRFSS may be a useful vehicle in this enterprise in that it can be analyzed by zip code.

REFERENCES

1. McNeil JM. US Bureau of the Census. Americans with Disabilities: 1994-95. P70-61. Washington, DC: August 1997. 

2. Task Force on Employment of Adults with Disabilities. Re-charting the Course. First Report of the Presidential Task Force on Employment of Adults with Disabilities. Presented to the President of the United States. November 15, 1998.



Objective 6.9 Workgroup

Increase the proportion of children and youth with disabilities who spend at least 80% of their time in regular education programs. Baseline in 2000 = 45% (of children 6-21 years)
Target for 2010 = 60%

Introduction 
As written, this objective targets the placement of children with disabilities in regular education.  It does not address the broader sense of inclusion (incorporating inclusion in other aspects of school life) applied elsewhere in HP 2010 or the ICF.

Given the wording and the use of Office of Special Education and Rehabilitative Services (OSERS) data to establish baseline and target figures, it is clear that the population to which this objective refers is the one defined under the Individuals with Disabilities Education Acts (IDEA) definition of a child with a disability as is represented by IDEAs thirteen eligibility categories.  It is important to keep in mind that this does not represent all children with disabilities participating in regular education.  For example, the objective does not include children with chronic health conditions who have section 504 plans, or other children with limiting conditions who otherwise do not require (or are not receiving) special education.

1. How practical are the targeted objectives for implementation by the year 2010?

This goal reflects the current OSERS goal for 60% of students served under IDEA to be served in the future in the regular education classroom at least 80% of the time.  We view the goal as attainable only if there are appropriate supports and services.  This proviso is important to ensure that participation in regular education is understood to mean more than merely physical inclusion in the same classroom.  The goal is not only attainable, but also important, given (1) the history of exclusion of students with disabilities and (2) recent legislation that mandates access for children with disabilities into the general education curriculum.

Additional important issues were raised related to this target.  They are:
1. Inclusion must take place and be evaluated in the context of choice.  That is, under the current circumstances, is inclusion a familys choice for their child?  (Choice here signifies true choice among a full range of appropriate options).  

2. Is it presumptuous to assume that 60% of families want and believe that 80% participation is the most appropriate option for their child?  

2. What are the major problems in addressing this objective?

A. Attainment of the goal must be examined by factoring in appropriate supports and services, not just placement.  However, data on what actually is provided have been difficult to obtain.  Data on this issue will be available from the Special Education Elementary Longitudinal Study (SEELS) by January 2002, and the National Longitudinal Transition Study-2 (NLTS-2) by January 2003.  

B. If families do not consider the local, regular education program as a quality environment for all students, what incentive do families have to pursue inclusion of their child with special education needs?  Families may perceive that in some circumstances alternative settings provide better overall quality for their child.  This choice should be acknowledged and respected.  

C. Under IDEA, schools have the primary responsibility, and are operating within a clear and specific mandate, to provide a free, appropriate, public education to students with disabilities.  However, when other agencies do not meet their responsibilities and agreements as a cost-cutting strategy, for instance (e.g., health care and services from social service agencies), schools must pick up the responsibilities for those services.  Although families and communities have options for due-process procedures with schools, there is little they can do to address the loss of services from outside agencies.  Recently many schools have looked to bill Medicaid for some of the health-related services they have been providing (e.g., physical, occupational or speech therapy; accessible transportation).  There has been considerable confusion about the conditions under which such billing is appropriate.  To address these problems, HCFA should soon publish a guide to the appropriate items for which to bill Medicaid.  It applies that states will have the prerogative to bill Medicaid if the services are in the student's Individualized Education Program (IEP) and may only do so for students who are Medicaid-eligible.

D. Being able to participate successfully (i.e., learn) in general education classrooms requires coordination of needed services within the educational system and across other systems.  

E. Lack of service integration in and out of school is a significant barrier for inclusion.  It is overly complicated for families to have to manage this coordination on their own.  State interagency agreements are supposed to clarify responsibilities with regard to the coordination of services for students with disabilities, but often they do not do so consistently.  

F. Among states and among urban, suburban and rural systems, there is a wide range in philosophy, funding, approach, implementation and actual percentages of students in inclusive settings.  There are also important regional differences in attitudes and values (e.g., on the East Coast a private placement has prestige).

G. There are great differences from state to state in how funds are linked to specific students (versus being made available to the system as a whole to support special education needs) and how special education costs are supported.  Some analyses have suggested that the federal government has not met its obligation for fully funding IDEA, placing undue burden on state education agencies and local school districts.  However, the procedural differences across states in how funds are calculated and distributed make it difficult to sort this out.  It is clear that in many states and school districts there are funding disincentives for inclusion.  One example of this is that more reimbursement is often provided for an outside or segregated placement than for supports within the regular education program.  Many states and school districts may not understand new options for supporting inclusion and have not implemented the necessary changes in their systems.  

H. Good cost estimates for including particular students, and which could serve as guidelines for school districts or others involved in implementing IDEA, do not exist.  The Office of Special Education Programs (OSEP) is currently conducting a financing study that addresses some of these issues.

I. There is a tendency to consider only the short-term costs of supports rather than the long-term benefits.  Those benefits would come from the provision of appropriate supports for inclusion.  In other words, instead of providing merely adequate supports now, look at how offering more complete supports now might prevent later difficulties.  Full consideration of costs must encompass all areas.  An example of this is considering the more immediate cost of education services and technology versus taking into account the long-term benefits of health and productivity.  Overhead should be measured as a separate cost since it is not as easily recognized as the concrete costs of hiring aides, for instance; this can make a big difference in implementation efforts.

J. There is a lack of appropriately qualified personnel at multiple levels, from aides to teachers who were trained for separate programs.  Low salary levels relative to the required years of educational preparation and level of responsibility are a problem everywhere.

K. There are attitudinal barriers.  Educators and administrators often believe that self-contained is still the best approach to educating students with disabilities.  

L. Many parents are not well informed about the intent of LRE (least restrictive environment) and inclusion, or the processes of IDEA.  The group of parents whose children have been served under Part C of IDEA are more sophisticated and have higher expectations for what should be provided and what choices can help them when their children transition to elementary school.  However, parents whose children are identified later do not have this information.  The kinds of procedures established to implement IDEA often presuppose that parents who have prior special program involvement are those who can more comfortably approach teachers and administrators.  

3.  Who are the governmental, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?  

Partners refers to our approaching others as well as others coming to us, and that we need to form a we.  In other words, almost any entity that deals with children would be a partner.  However, some of the more apparent ones are listed here.

A. Government/policy groups
1. Interagency Coordinating Councils (ICC), for IDEA Part C  
2. MCHB and Title V programs
3. SSA
4. DOE
5. NGA
6. Council of Chief State School Officers (CCSSO)
7. National Conference of State Legislators (NCSL)
8. CSAVR
9. Substance Abuse and Mental Health Services Administration (SAMSHA)
10. ATAP

B. Education 
1. National Education Association (NEA)
2. American Federation of Teachers (AFT)
3. Association for Supervision and Curriculum Development (ASCD)
4. Council of Chief State School Officers (CCSSO)
5. National Association of Bilingual Education (NABE) 
6. American Association of School Administrators (AASA)
7. Council of Administrators of Special Education (CASE)
8. Council of Great City Schools (CGCS)
9. National Alliance of Black School Educators (NABSE)
10. National Association of Elementary School Principals (NAESP)
11. National Association of Secondary School Principals (NASSP)
12. National Indian Education Association (NIEA)
13. Association for Career and Technical Education (ACTE)
14. National School Board Association (NSBA)
15. Quality Education for Minorities (QEM) Network 
16. Academy for Educational Development (AED)
17. Council for Exceptional Children (CEC)
18. National Association of State Directors of Special Education (NASDSE)

C. Health service professionals
1. American Academy of Pediatrics (AAP)
2. National Association of School Psychologists (NASP)
3. National Association of School Nurses (NASN)
4. American Occupational Therapy Association (AOTA)
5. American Physical Therapy Association (APTA)
6. American Speech-Language Hearing Association (ASHA)
7. American Public Health Association (APHA)
8. American Psychological Association (APA)

D. Advocacy and parent groups
1. Centers for Independent Living (CILs)
2. Coalition for Citizens with Disabilities (CCD)
3. American Association of People with Disabilities (AAPD)
4. National Council on Disability (NCD)
5. March of Dimes
6. The Arc
7. Parent Advocacy Coalition for Educational Rights (PACER)
8. National Council on Independent Living (NCIL)
9. Alexander Graham Bell Association for the Deaf and Hard of Hearing
10. The Federation of Families for Children's Mental Health
11. Center for Law and Education
12. National Down Syndrome Congress
13. Parent Training and Information Centers (PTI) 
14. Parent-teachers associations (PTA) and parent-teacher organizations (PTO)
15. Parent-to-parent organizations
16. Grassroots Consortium
17. State and local parent groups funded by SAMSHA (mental health)
18. Family Voices
19. Fiesta Educativa 
20. National Association for Parents of the Visually Impaired

E. Community/social services
1. Juvenile justice system
2. Public health agencies
3. National Indian Child Welfare Association

F. Corporate entities
1.	Managed care organizations
2.	Pharmaceutical companies
4. Software technology companies (e.g., Microsoft)
5. National Ad Council
6. Public relations firms

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?  

A. Effort toward this objective is already mandated under IDEA.

B. Encourage DOE to collect appropriate funding data.  In states, eliminate funding disincentives to inclusion.

C. Examine the use of Medicaid funding.  Look at Medicaid policy and how it impacts service delivery under IDEA when these funds are tapped.  That is, local education authorities can bill Medicaid for some related services (e.g., occupational therapy, physical therapy) provided to children in special education.  However, because Medicaid is a medical/health coverage program that typically funds medically necessary services, those services provided under IDEA are not determined on the basis of medical necessity but on the basis of supports needed to enable effective participation in the educational program.

D. Examine state health professional practice acts that impose restrictions on the ability to delegate or deliver services in flexible ways.  That is, certain health-related supports require administration by specific professionals, for instance, a registered nurse (RN).  If there is no such person on site, the activity cannot be delegated to someone else, even following appropriate training, so a child may be restricted from placement in that setting.  Training to understand the multiple systems involved in services?policies, regulations, advocacy, and training in how to function in a consultative role?is also needed. 

E. Incorporate functional life skills and career skills in the general education curriculum.  Assess high school curricula and their content (e.g., many programs focus exclusively on academic skills and do not provide a regular education curriculum oriented toward life skills needed for productivity and independent living.)

F. Provide adequate and appropriate training for teachers, administrators, and other service providers to support inclusive practices.

G. Examine the use of personal care assistance (PCA) models in the school setting; for example, make PCA training a part of vocational education. 

H. Examine the impact of zero-tolerance policies (regarding school safety from violence) on inclusion and the ability to meet special health needs (e.g., restrictions on students having access to respiratory inhalers, or lancets for diabetes blood-glucose testing)

I. Recommend that all schools have one school nurse on campus to care for all students and to better ensure inclusion of students with health conditions.  

J. Examine mental health supports in schools.  For example, support personnel, such as school psychologists, are often involved in assessment with little time for consultation.  Intensity/use of pre-referral mental health interventions varies significantly across states.  Mental health services can be successfully incorporated into school health clinics.  (Collaborate and integrate with efforts for achieving HP 2010 Objective 6.2: Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.)

K. Synthesize and disseminate information on effective inclusion practices.  Information should be tailored to meet particular audience needs (i.e., parents, teachers, etc.).  Look at data from states that have already achieved, or have come close to achieving, this objective in order to identify those programs that can serve as models.  Describe how successful model programs accomplished objectives, and disseminate findings in the most accessible and usable format possible. 

L. For educators and service providers, support the access to and use of assistive technology that is designed to 1) increase efficiency and effectiveness by reducing paperwork and 2) increase access to relevant student information while assuring confidentiality.  

M. Provide training and access to technology for students and their educational team members (teachers, assistants, related service providers) to maximize the use of technology.  Note: Funding mechanisms often only fund equipment and not training of students and personnel in the effective use of the technology. 

N. Support effective interdisciplinary training for all educators.  Participants in IDEA should understand how their roles intersect and combine to support the ultimate objectives.  Support training of stakeholders and other educators to understand the multiple systems involved in providing educational services? policies, regulations, as well as advocacy and training in how to function in a consultative role. 

O. Advocate for and provide training on universal design for textbooks and on architectural designs for new schools.

P. Focus on technology that might benefit other students, not just those with disabilities.  For example, provide texts in alternative formats or texts that are readily adapted to different levels, needs, and learning styles.  Develop and provide teacher guides for how to use the same text to address different needs and in varying presentation modes.  Help create a mindset that focuses on what would help everybody, not just concentrating on tailoring situations and devices to the students with disabilities.  

Q. Collaborate and integrate with efforts for HP 2010 Objective 6.11: Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed. 

R. Provide public awareness activities to emphasize the benefits of inclusion not only to special education students, but also to the larger public; for example, establish disability study units for all grade levels, K-12. 

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

A. The current system provides adequate measures for tracking progress towards tracking this objective.  However, there are data available:
1. By age: Inclusion definition and issues for ages 18-21 are different; 18-21 reflects the usual age after high school graduation for most youth.  Regular education programs in traditional high schools may not offer much for this age group, which then makes inclusion difficult.
2. By disability category: Progress is being made in inclusion for all groups of students.  Some groups, such as students with speech/language impairments, already surpass the 60% target.
3. By state: Some states may be meeting or exceeding the objective now; they might serve as models.

As has been mentioned, there is limited information on related aspects of this objective (see section II, A and H).  

B. Recognize that IDEA reporting data does not capture all students with disabilities as defined by other measures.  It does not include students with Section 504 plans.  In this context, students with disabilities only includes those who receive special education services under IDEA.

C. Track dropout rates for students with disabilities.  As more states implement high stakes testing for graduation?often with inadequate supports or alternatives for students with disabilities?dropout rates may increase as students decide the effort to stay the course is too difficult.  Increases in inclusive participation rates must not be achieved by increased dropout rates.  

D. Gather data about specific services and supports to encourage inclusion; OSERS longitudinal studies may include these data.

E. Make efforts to see whether data related to students with disabilities are compatible across studies; for example, do Medicaid expenditure studies refer to school supports for students with disabilities?

F. Check the adequacy of the audit system for OSERS data collection and reporting at the local level.  Are currently reported participation rates accurate? 

G. Look for different ways to measure inclusion by using a broader definition (e.g., inclusion in extracurricular and health-related activities).  

H. Emphasize and support the idea of special education as a right and a service, not a program.

Conclusion
For the future, look at alternative ways of setting this objective and measuring success rather than simply using the proportion of the total group and the proportion of overall time spent in regular education.  Ultimately, it is the adequacy of supports and services that is most closely linked to health and well-being, not the placement of children.  Schools (and advocates) must keep in mind factors such as safety, friendships, and adequately trained personnel.  

Families must have informed choice in school and classroom placement for their children with disabilities.  They will only have true choice across the continuum if there are adequate supports for including students with disability in regular classrooms.  As students with disability mature, they must also have the right to make informed choices.



Objective 6.10 Workgroup

(Developmental) Increase the proportion of health and wellness and treatment programs and facilities that provide full access for people with disabilities

Introduction
Achievement of fully inclusive health, wellness, and treatment programs in accessible facilities will resolve many issues of health-related prevention and intervention.  This objective is feasible through the collaboration of numerous agencies.  Accomplishing the activities in this objective will provide an opportunity for todays advocates across lifestyles, disciplines, and law-making/law-surveillance agencies to build upon the civil rights work of prior decades.  In addition, the science associated with the objective will allow stronger data and policy to develop.

1. How practical are the targeted goals for implementation by the year 2010?

Given that there are no data associated with this developmental objective, we examined for their practicality the two overall goals of HP 2010 Chapter 6.  We consider these goals?
Maximizing the Quality and Years of Healthy Life for People with Disabilities, and 2) Eliminating Disparities Between People with and without Disabilities?to be practical.  

We can progress toward achieving these goals and still achieve the objective.  For 10 years ADA has provided standards and guidelines.  As the most pervasive disability rights law, it has provided the power to move us toward full inclusion; however, we still have a long way to go toward ADAs application in specific health and wellness environments.  

The feasibility of this project is enhanced by the five funded ICF projects, which will have established initial data as well as tools and mechanisms, in the areas of: 1) recreation and fitness, 2) tools for communication, 3) community checklists through assessments of Centers for Independent Living (CIL model states), 4) schools and other environments for children, and 5) community access and use.  

Therefore, although it is unlikely that eliminating disparities or even maximizing quality and years of healthy life are realistically achievable in full, these are worthy targets toward which maximal effort should be exerted.  Once valid, instruments are developed to measure accessibility of the environment, including health and wellness programs and facilities, it will be possible by 2003-2004 to establish baseline data and develop a target to be achieved by 2010.


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch have concluded an agreement by which data to measure this objective will be included in the NHIS supplement during 2002.  


2. What are the major problems in addressing this objective?
The following problems exist for addressing this objective.  

A. Definitions
1. There is an inconsistent use of disability definitions and categories across systems.  (See Objective 6.1)
2. There are unclear criteria for the construct; that is, full access is not clearly defined as it applies to that which pertains to means of communication, entrance and use of facilities, and multiple formats of information for those with physical, sensory or cognitive disabilities.  Examples of multiple formats would include Braille, large print, screen readers (for Internet information), voice-activated devices for people who cannot read, and accommodations for people with hearing impairments (such as print handouts for verbal presentations).
3. The meaning of inclusive wellness treatment programs and facilities is unclear.  

B. Dissemination and monitoring of best-practice health and wellness, and treatment, information (programs and facilities) is the means by which positive change will occur.
1. The objective is extremely broad in scope as it applies to:
a. acute-care and long-term issues, 
b. primary and secondary conditions, 
c. health maintenance issues, and 
d. the impact of impairment upon activities and/or participation.
2. Identification of similar projects and creation of collaborative networks will be a substantive undertaking.  Health, wellness and treatment programs cut across various disciplines and professional groups; this may make it difficult to collect consistent data across domains (rehabilitation, fitness, etc.)

C. Criteria development
1. What to measure; how and when?
2. Optimal data should include: a) End-user data across a broad variety of activity and participation limitations; and b) on-site facility assessment in conjunction with self-report.

D. Data collection and management
1. A large number of unrelated data tracking systems exist for disparity issues 
2. A broad scope of entities (agencies, professions, end-user groups, policy-making groups, etc.) are involved.
3. Relevance of potential data markers must be verified by end-users.

E. Evolving research methodology 
Valid and standardized instruments to measure community accessibility will probably not be completed until 2003 (five ICF projects).

3. Who are the governmental, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?

Because the breadth of this project calls for elimination of disparities (between people without and with disabilities) across a broad range of programs and facilities, a key activity will be to identify those stakeholder groups who are already invested in some aspect of implementing this activity and achieving this objective. 

There are tiers in this implementation.  They are:
* Because the ICF Objective 6.12 project has the charge to develop tools for data collection, it is suggested that those who are invested in this activity (such as those connected with HP 2010 Objectives 6.1 and 6.10) review the ICF tools and work collaboratively with them. 
* A small appointed group should verify that the collaborators include end-users, policy-makers, service providers, and researchers.  A preliminary suggested list follows.

A. Disability/advocacy organizations
This list includes the NCIL, AARP, American Society on Aging and other aging interest groups, Access Board, Robert Wood Johnson Foundation (RWJF), Gray Panthers, Consortium for Citizens with Disabilities (CCD) Health and Wellness Task Force, and health and rehabilitation professional organizations such as the Society of Public Health Educators (SOPHE), AOTA, APTA, ASHA, American Dental Association (ADA), American Medical Association (AMA), Association of American Medical Colleges (AAMC), Association of Assistive Technology Act Projects, Independent Living Research Utilization at The Institute for Rehabilitation Research, NCPAD Disability and Business Technical Assistance Centers (DBTACS), and national disease/specialty associations such as the American Heart Association, American Cancer Society, American Lung Association, and American Psychological Association (APA).

B. Designers/builders
American Institute of Architects (AIA), American Planning Association, American Builders Association, national and state departments of transportation, and those involved with universal design.

C. Governmental agencies
This category includes the US Architectural Access Board, CDC, National Association of City and County Health Officials (NACCHO), NIDRR, NCD, OSERS, and state and local public health agencies.

D. Health and wellness organizations
National Therapeutic Recreation Society (NTRS), International Association of Fitness Professionals (IAFP), American Council on Exercise, National Governors Council on Physical Fitness, Presidents Council on Physical Fitness and Sports.

4. What are initial programs, current or envisioned, and/or policies, that could help meet this objective.

A. Data
1. Integrate with current data-collection activities and foster inclusion of the disability-identifier questions (ICF projects, BRFSS, National Immunization Survey [NIS], Youth Risk Behavior Survey [YRBS], NCHS).  On appropriate questions, expand data to determine why disparity exists. 

2. Establish additional mechanisms to increase the visibility of disparity data.


B. Standards
1. Strengthen the information center or clearinghouse for Standards and Guidelines of Accessibility of Facilities and Programs (National Center on Physical Activity and Disability).

2. Establish standards, guidelines, and policies for a Code of inclusion or a Code of accessibility/usability.

3. Raise awareness on the demand side; provide how-to information.

4. Promote development of programs and facilities for alternate-format access to information about health and wellness opportunities.

C. Public finances
1. Convince HCFA to include functional assessment on patient encounter forms.

2. Expand Medicaid funding for health and wellness.

3. Encourage health maintenance organization (HMOs) to finance health and wellness programs.

D. Incentives
1. Establish incentives for the private sector to establish health risk assessments for people with disabilities.

2. Search and identify other options for health and wellness funding (e.g., in the private sector).

3. Create incentives for programs and facilities that meet ADA compliance (e.g., tax incentives for inclusionary health and wellness programs; wrap-around federal credits).

4. Establish a priority for using trust monies (e.g., the tobacco industry class-action litigation settlement funds, DUI trust funds, Blue Cross/Blue Shield for-profit status, etc.)

E. Funding
Encourage funding agencies to support initiatives that promote training programs for caregivers (e.g., personal assistants, home health aides) and professionals (e.g., personal fitness trainers) and that support linkages with health and wellness programs (e.g., access to a YMCA). 

F. Education and training
1. Provide disability-related professional certification for both facilities and individuals.

2. Provide education regarding the guidelines.

3. Include criteria for accreditation standards for various professional groups (all aspects of professions related to health, wellness, etc.)

5. Are adequate mechanisms in place for tracking progress toward meeting the targeted goals? If not, what needs to be done to institute such tracking mechanisms?
Although there are a number of tracking systems in place, they are inadequate.  Suggestions for improving these systems are to: 

A. Expand long-term disparity data (areas not covered in current efforts; one example is shelters for battered disabled women; the nations 2,000-plus shelters are routinely inaccessible to people with disabilities mainly due to the lack of assistance with activities of daily living [ADLs]).
B. Partner with NHIS and add questions about facilities.  Address the over-sampling procedure for people with disabilities and analyze the reason for the disparity.
C. Develop a facility-accessibility and -usability assessment program.
D. Develop a program-access and program-usability user survey.  A program-access user survey conducted by the Center for Research on Women with Disabilities found that many battered womens programs do provide several disability-related services; most claimed to be wheelchair accessible, but often only to access the administration/intake building.  Some programs had wheelchair-accessible emergency shelter facilities.
E. Use Health Plan Employer Data and Information Set (HEDIS) data to rank health insurance programs, including accessibility of facilities and programs as a measure.

6. Recommendations
The term treatment is often used in order to be politically correct.  We recommend identifying wherever and whenever that is the case.  
A. Although we are moving toward using more autonomous terms, such as end-user and consumer, there are appropriate times to consider a person as a patient.  As we agreed upon this in a colloquial way, whenever a person is wearing an open-backed hospital gown, he/she can be referred to as a patient.  In that particular circumstance, it is probably okay to consider the intervention done at this time as treatment.  However, when that person is finished with the acute phase of his/her illness or condition, he/she is not to be seen exclusively as a patient, but in a whole-life, larger context; that is, as a person (or consumer or end-user) who has a limitation in activity and/or participation.

B. The term treatment has a specific meaning in medicine and should only be used in a medical context.  A person receiving medical care would be in a treatment program; a person receiving health promotion and wellness advice or counsel would be receiving everything else.  Treatment is ordinarily used as synonymous with curing and refers to an illness, injury, or disease; health promotion follows the treatment phase.  



Objective 6.11 Workgroup

Assistive Technology: (Developmental) Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed

Introduction  
Although the official objective cannot be changed, we propose the following language modification in Objective 6.11: Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed to participate in home, school, play, work or community activities.  This will strengthen the overall participation of individuals in their personal activities and in society.

Assumptions
1. Assistive technology (AT) signifies any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities as defined in the Assistive Technology Act of 1998.* This includes devices and related services and is not limited to Medicares current definition of durable medical equipment.  Assistive technology, therefore, includes mass-market products with universal design features, and is not restricted to special equipment used only by people with disabilities.

2. Assistive technology can be used to increase independence and reduce health disparities.  It is an important element in achieving the goals of HP 2010.  As such, AT utilization should not be used as an indicator of negative health status in measurement and data collection for any objective.  It is counterproductive to use functional measures that discriminate against the use of assistive technology (as pointed out in HP 2010 Objective 6.4).

3. Assistive technology is not a substitute for other types of support services, but an adjunct to them. 

4. Assistive technology generally refers to technology used by an individual. It is important to keep in mind the differences between public/environmental technology and personal technology, and the interactive relationship between them.  There are things an individual can do to effect change (e.g., buy and use more personal technology, develop additional skills, use personal assistance) and things that communities and businesses can do; that is, make public and commercial space accessible to and usable by all.

1. How practical are the targeted objectives for implementation by the year 2010?
This objective is termed "developmental" because there are currently no national surveillance data to support its inclusion as a data-driven objective.  When data are available, there will be more clarity about setting a target.  The objective is very important, but data are needed to move forward.

2. What are the major problems in addressing this objective?
We have identified six (6) major obstacles with regard to personal assistive technology (AT).  They include the following. 
1. A lack of appropriate data; for example: prevalence of AT use, AT use over time, and access to and use of AT; also, the lack of data as it applies to emerging disability populations
2. A lack of appropriate measures to assess the relationship between participation and the use of assistive technology


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch have concluded an agreement by which data to measure this objective will be included in the NHIS supplement during 2002.  


3. Insurance coverage/payment policies that exclude coverage for assistive technology and/or prohibit access to and use of an adequate range of assistive technology
4. A lack of incentives (inadequate reimbursement) for industry to invest in research and development for emerging technologies
5. A lack of financial incentives in terms of tax breaks for individuals; that is, leasing wheelchairs, depreciation on equipment, low-interest loans amortized over 20-30 years, etc.
6.  Appropriate language throughout Healthy People 2010 must reflect that assistive technology enables people to be independent and to increase their participation in activities they deem to be important.

A. Lack of data
1. On developing disabilities and disability groups that may not have been seen as benefiting from assistive technology, e.g., people with cognitive disabilities.  Developing disabilities refers to new" or emerging disabilities, i.e., people who previously would not have survived particular congenital infectious diseases or injuries, now may expect life spans that approach the typical.  This term may also refer to the phenomenon of people developing disabilities as they age (e.g., reduced vision, hearing, and mobility) or the influence of AT on the development of young children; perhaps AT increases their social and intellectual capacity.  We do not have longitudinal data comparing a group of well equipped versus poorly equipped children using social and academic outcome measures.  

2. On who owns, leases, rents or has access to and use of technology for specific activities (education, work, athletic events).  We need to collect data on ownership to provide a base rate for tracking progress in this area.  For example, if AT were to be moved from being a medical deduction to the 1040 Tax credit section, we could predict an increase in personal ownership.  However, this would require identifying a current rate of ownership prior to making the tax code adjustment.

As it pertains to this lack of data, the second BRFSS disability question (see Objective 6.1) does not capture the following information. 
* It is not possible to discern which people with disabilities require equipment, but do not have the equipment.  If one recognizes a need for equipment, an individual could answer yes, but the question does not indicate whether the people with disabilities have the equipment they need.
* It is not possible to discern which people with disabilities require equipment, but cannot use the equipment they have.  Many people with disabilities have devices that do not work for them.  The NRHCHDR has conducted studies on this issue.  If an individual knows he/she needs the equipment, that person could answer yes, but, as phrased, the question does not indicate that the equipment is providing benefit; that is, the question should ask whether the equipment is useful or whether the interviewee needs something else.
* People with disabilities who use equipment that is not special.  Most people with disabilities use at least some equipment to accommodate their disability in a way that was not specifically designed for that purpose or use.  Also, some equipment with universal design features?although not specific to disability?accommodates and provides function and benefit for people with disabilities. 

3. On personally devised assistive technology and accommodations, or family innovations.  These types of data would be highly variable and very difficult to track without conducting a large longitudinal study.  Even employing that approach, the heterogeneity in AT and type of limitation studied would render the study, at the least, challenging to undertake.  However, with the right questions, acknowledging the ingenuity and contributions of people with disabilities, these data could be measured. 

4. On the effects of AT in preventing and treating secondary conditions.  Establishing base rates for high tech devices would be relatively easy to do since they have yet to be installed in large numbers or purchased (e.g., new multi-functional wheelchairs, communication devices, etc.)

B. Lack of appropriate measures.  
We need measures for quantitative functional participation assessment.  To the best of our knowledge, a survey or assessment tool does not exist that provides the base rate for a single type of AT for ownership, shelf life, durability, use, or change in the social participation in a wide array of activities.  The Functional Measure of Independence (FIM) is limited in the types of activities it covers; the independence score is lower with AT use and no attention is given to the type of AT used.  The Food and Drug Administration (FDA) penalizes new devices that provide for increased participation (in areas not covered by the Functional Measure of Independence [FIM]) because the criteria for approving medical devices are based on already-existing equipment.  For example, the new transporter, the IBOT, provides the user with vertical as well as enhanced horizontal movement capacity, but no existing measurement tools can cite this innovation.  Although the Technology Act of 1988, as amended, has created state agencies, none of them maintains a statewide tracking procedure of any device.  No assessment of a need for AT exists that crosses boundaries for limitation and activity. 

C. Reimbursement policies are inadequate, limited to categories that narrowly define medical necessity, and are biased against the participation element of health as posed in HP 2010.  Both public and private health insurance systems have outdated policies and processes for assessing new assistive technology.  As a result, new technology is routinely denied coverage and reimbursement.

D. Rephrase Objective 6.11 in order to strengthen the focus on participation.  As stated in our introduction, the revised objective would read:  Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed to participate in home, school, work or community activities.

E. Lack of incentives for industry to engage in research and development of assistive technology.  This problem is primarily due to the lack of reimbursement for the devices, especially for innovative technologies that do not fit into existing funding schedules and categories.


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch have concluded an agreement by which data to measure this objective will be included in the NHIS supplement during 2002.  


3. What are initial programs, current or envisioned, and/or policies that could help meet this objective? 

A. Major programs 
1. To develop a prototype program, we first need a measurement system, grounded in the concept of participation, that looks at:  
a. activities,
b. choice,
c. frequency,
d. satisfaction,
e. importance
f. access to and use of assistive technology, and 
g. the type of assistive technology used/needed.

2. Literature reviews/meta analyses are needed on:
a. current measures for AT use based on the participation concept
b. prior surveys on assistive technology
c. use-disuse/abandonment of assistive technology

3. Studies to identify and develop emerging assistive technologies are needed.  

4. Develop a prototype for collecting evidence that has the potential to determine whether use of current or improved assistive technology effects change in participation.  Examples are:
a. Collection of durable medical equipment (DME) and augmentative communication data regarding assistive technology and participation, and related expenditures; nationally
b. Treadmill (CPG) training 
c. Functional electrical stimulation (FES): bowel and bladder
d. Mobility devices
e. Pain management devices
f. Biofeedback devices
g. Assistive technologys role in increasing participation in people with chronic disease such as diabetes and arthritis
h. Technology's role in providing support for/assistance to caregivers of the elderly

5. Requirements that the NIH cohorts include people with disability and track their need for and use of technology; identify this need for assistive technology as well as what type of technology is actually used.

B. Proposed policies
1. Universal encounter form to collect information regarding the need for and actual use of assistive technology (Program #4 cited above)
2. New policies required for reimbursement: Medicare/Medicaid, HMO/PPO (Problem II.3, cited above)
3. Tax credits: for individuals and for companies; tax code changes at both the federal and state levels; coverage and payments for innovations in assistive technology development (Problem II.5, cited above)
4. States should be encouraged to enact conflict-of-interest laws to prevent impropriety in the relationship of health care providers who prescribe and sell durable medical equipment.


4. Who are the governmental, nongovernmental, private, and other Consortium members who could/should be partners in implementing this objective?

A. For partners for Program #4 (cited above) we recommend:
1. Developing the prototype with the federal health agencies (e.g., use the VA system to implement the prototype study for men, and look for partners to include women.)
2. For prototype studies, we recommend as partners Rehabilitation International (RI), Disabled People International (DPI), and AAPD.
B. For the program involving technologys role in increasing participation in people with chronic disease such as diabetes (e.g. under Program #4.g., cited above), we recommend partnering with CDCs Center for Chronic Diseases and NIHs The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). 
C. Partners for working on Problem II.3, cited above, include the long-term disability insurers (LTD) and workers compensation administrators. 
D. Partners for working on Problem II.4, cited above, include the International Trade organizations, the National Science Foundation, the NASA, NIDRR, and NIH, the Bio-Tech Industry, and the NSF and academic alliances.

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

A. For the programs described above, as it involves tracking prototypes and measurements, we have the following questions and suggestions.
1. Is NHIS-D scheduled to be conducted again?  How can we influence it?
2. Issue the request for proposal (RFP) in early 2002 to initiate literature reviews and study designs.
3. Complete designs for prototypes, surveys, and measures by 2004.
B. Reimbursement policies
1. Track new legislation related to assistive technology and its status
2. HCFA new technology policy
C. Incentives for industry
Examine records of the SBA and Internal Revenue Service (IRS) for industry development of technology
D. As it regards the assistive technology perspective, suggestions of new mechanisms for tracking progress toward the goal of Maximizing Quality and Years of Healthy Life follow.
1. Track new legislation and status.
2. Track HCFA payments for AT.
3. Track policy developments towards decreasing disparity as they regard transportation, housing, and employment.
4. Identify and help to modify current mechanisms used for tracking AT. 
5. For HMOs/PPOs, workers compensation, long-term disability insurance, track payment claims, payments made, and amounts awarded
E. Use accessible public information and industry records regarding AT sales to determine if an increase in the rate of sales parallels the rate of demand for new assistive technology.


Objective 6.12 Workgroup

(Developmental) Reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities

Introduction
Data from the National Safety Council show that seven out of 10 workers between the ages of 35 and 65 will experience a disability lasting 3 months or longer.1  One out of seven will be disabled for 5 years or more before retirement.  In addition, Census Bureau data project that by the year 2030, 20% of the population will be 65 or older.2  Such statistics illustrate the need to educate the public about making adaptations for disability, and that this phenomenon is not exclusive to people with disabilities as they are considered in a more traditional sense.  Accessibility and usability will need to be understood as an integral part of all design; merely tacking on to designs or buildings an accessibility component after the fact will not suffice.  Universal design will call for a constant and widespread rethinking of the term disabled such that the public increasingly recognizes that the needs for and benefits of universal design apply to all of us.  

1. How practical are the targeted objectives for implementation by the year 2010?
The HP 2010 process has strategically worded a developmental objective in 6.12.  This objective has a high probability of being retained because of the relative simplicity of the assessment being called for.  Practical methods currently exist to quantify subjective reports of encountering environmental barriers.  In a statewide population-based survey, The Craig Hospital Inventory of Environmental Factors (CHIEF) 3 has been validated for use by people with and without disabilities.  Data from that application (as well as data from other surveys) have demonstrated that many people encounter environmental barriers; people with disabilities encounter environmental barriers more frequently, and consider them to be more problematic, than do people without disabilities.

While the wording of the specific objective increases its practicality for measurement, the intent of the objective is more substantial.  A more general phrasing of the broader objective might be Increase the amount, ease, and quality of participation for people with disabilities through the reduction of environmental barriers in home, school, work and community settings.  While the more general wording would be more difficult to assess because of its implied objective measurement of physical, attitudinal and policy barriers in multiple settings, the strategy to achieve either the specific or the more generally stated objective is known to be part of universal design.

The process of universal design uses a positive, comprehensive and inclusive approach that helps change the view people typically have?that is, that this issue only affects a small minority of people who have minimal potential for full participation.  By contrast, universal design demonstrates the potential of people with disabilities when environmental barriers are removed, using techniques that improve the lives of all people.  It attempts to eliminate all types of environmental barriers by selecting design, approach and policy solutions that have the widest possible acceptance by the broadest variety of people.  Universal design inherently includes direct insights from people with all types of disabilities and it is strengthened by a combination of bottom-up, grassroots strategies as well as top-down, leadership techniques.
The implementation of universal design principles to meet these specific and general objectives is not only practical, it is essential.  Universal design is a concrete approach to reducing environmental barriers and it is usually one of the easiest and most economical ways to improve societal participation by people with disabilities.  In a broad interpretation of universal design principles, attitudinal and policy barriers, as well as physical barriers, are addressed.  Universal design is a positive mechanism for minimizing the segregation of people with disabilities from the general population.  By facilitating greater participation of people with disabilities in public settings, public attitudes toward people with disabilities can become more positive due to increased exposure.  Since universal design principles are best implemented through a broad systemic and policy-based approach rather than on an individual case level, major macro-level policy change will be more likely to occur.


March 2001 STATUS UPDATE: CDCs National Center for Health Statistics (NCHS) and Disability and Health Branch have concluded an agreement by which data to measure this objective will be included in the NHIS supplement during 2002.  


2. What are the major problems in addressing this objective?

A. Problems to overcome in meeting the specific goals of Objective 6.12 include the following.

1. Conceptual and operational definitions of environmental barriers and universal design are vague, and common usage of the terms is often limited to physical barriers in the built environment.

2. There is no consensus among disability researchers on the most appropriate items or measures to use in assessing perceived environmental barriers in population surveys.

3. Current survey research methods are not yet fully accessible to the broad range of people with disabilities (e.g., people with cognitive impairments cannot answer the questions in the CHIEF3 chart).

4. Aggregation of individual data cannot fully reflect the underlying heterogeneity of diverse subgroup viewpoints.

B. Problems to overcome in meeting the more general goal of Objective 6.12 include the following. 

1. It does not seem effective to fully measure environmental barriers merely through health-related population surveys.  Even an ideal subjective measure of comprehensive environmental barriers is not equivalent to using more objective measures of community environments; both are needed.  There is no national information system that is designed to focus on environmental barriers; health surveys are individually based, not community based.

2. On a national basis, interventions to improve community environments for people with disabilities are scattered and not well organized.

3. Resources, personnel and methodologies to implement environmental change are limited.

4. In general, reducing environmental barriers is not high on the list of major problems cited by the general population, but it is a top priority on the list cited by people with disabilities.  This discrepancy must be bridged to solve the problem.

5. Additional research is needed to investigate the underlying theory of and mechanisms for increasing participation by means of decreasing environmental barriers.

6. From an ergonomic perspective, there is a lack of comprehensive data on the full range of human functioning.

7. There is no single mechanism or central agency which has been legislatively charged with addressing the issue of removing environmental barriers for people with disabilities at the federal or state levels; vague responsibilities are currently shared among education, health and human service agencies.

3. Who are the governmental, nongovernmental, private and other Consortium members who could/should be partners in implementing this objective? 

A. Designers, builders, architects, and planners 
B. Interior decorators and facility managers
C. Developers of intentional communities
D. Centers for universal design 
E. Universal design practitioners
F. State level offices of disability and health
G. Federal agencies such as the departments of housing, transportation, education, labor, health and human services, and justice
H. Area agencies on aging and AARP
I. Environmental health representatives
J. Employers, human resource directors, and school administrators
K. The National Ad Council and media corporations
L. Politicians and community leaders
M. Churches, synagogues and other faith-based communities; and voluntary nonprofit organizations
N. A variety of disability researchers, health survey developers, and people with disabilities
O. Access Board
P. University researchers
Q. State Technology Act Projects and the Association of Technology Act Projects (ATAP)

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?

A. Research and planning
1. Investigate the range of human functioning among the total population with implications for environmental design.

2. Incorporate the subjective assessment of environmental barriers into national surveys (see Objective 6.1).

3. Develop and test more objective measures of environmental barriers through the five recent CDC awards to develop measures of the community environment.

4. Apply public health methodologies to a review of existing environmental barriers data in an effort to target environmental interventions with the greatest potential impact.

5. Develop a standardized national measurement process for objectively assessing community environments and enact legislation to implement common data collection.

6. Investigate specific examples of environmental factors affecting the health, participation, and quality of life of people with disabilities.

7. Institute objective environmental barrier assessments by health departments, beginning with health care facilities, but expanding to schools, work places, and the community in general.

B. Partnerships 
Highlight communities that are particularly effective in improving community environments.

C. Funding
Invigorate the government-funded state disability and health programs to address environmental barriers by providing assessment tools and funding pilot interventions to reduce barriers; also, expand the capacity building grants to all fifty states.

D. Public education
1. Raise expectations of what people with disabilities can and should do.

2. Disseminate all public health material in multiple formats (e.g., educational materials, news briefs, memos, resource lists, etc.)

3. With the assistance of the National Ad Council, develop a public relations campaign that targets attitudes toward people with disabilities; incorporate the message that universal design is good for everyone while being especially helpful to people with disabilities because it increases participation and choice.

4. Establish a national clearinghouse on universal design materials and publish comprehensive guidelines for implementing universal design principles in home, school, work and community settings.

E. Professional education 
1. Expand the perspective of health, education and social service providers to incorporate the broader environmental context.

2. Establish a clearinghouse on universal design materials and publish comprehensive guidelines for implementing universal design principles in home, school, work and community settings.  

3. Some architects suggest that one of the greatest obstacles to accessible (and attractive) design is the paucity of ADA-compliant products for the home.  We recommend creating a means by which architectural groups can contribute to a knowledge database for the manufacturing industry to produce and promote such products.

F. Implementation
1. Create a presence on disability in the White House to review all public policy with regard to its impact on people with disabilities, and coordinates national policy on ADA compliance and reducing environmental barriers to participation.

2. Shift to systemic solutions for reducing environmental barriers in much the same way that anti-tobacco campaigns have shifted from assisting individual smokers with smoking cessation to advocating for smoke-free environments.  

3. Incorporate systematic consideration of universal design principles in the urban-planning and building-permit process.

4. Implement universal design principles in the curricula of schools of design, architecture, and planning.

5. Advocate ADA and IDEA enforcement by the Department of Justice.

6. Develop a standardized national measurement process for objectively assessing community environments and enact legislation to implement common data collection.

G. Advocacy 
As with Implementation, create a presence on disability in the White House to review all public policy with regard to its impact on people with disabilities, and coordinates national policy on ADA compliance and reducing environmental barriers to participation.


5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

Progress in achieving Objective 6.12 can be measured by the quick implementation of subjective environmental barriers questions in national surveys (see March 2001 status update box under section 6.12, I.  This will establish a baseline and a change tracked over time, followed later by the implementation of more objective community environmental assessments which are currently under development.

REFERENCES

1. National Safety Council. Cited by: Dietsch DK. Universal Design Is No Barrier to Style. Washington Post. Feb 22, 2001; H01.  

2. Projections of the Total Resident Population by 5-Year Age Groups, and Sex with Special Age Categories: Middle Series, 2025 to 2045. Source: Population Projections Program, Population Division, US Bureau of the Census, Washington, DC. NP-T3-F.

3. Craig Hospital Research Department. Craig Hospital Inventory of Environmental Factors Manual. Englewood, Colorado: Craig Hospital; 2001.



Objective 6.13 Workgroup

Increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers

Introduction
There is an emerging recognition of the importance of health promotion for people with disabilities, and the elimination of health disparities is has becomea priority public health issue.  Strong emphasis must be placed on engaging and expanding the role of public health agencies in addressing health disparities between people with disabilities and the general population. this critical issue. As a natural component of the charge of state health departments, Objective 6.13 calls for the full integration of preventive health services, health -promotion, and chronic-disease prevention programs for people with disabilities.  By providing funding, technical assistance, and strong public health leadership, expansion of disability surveillance and state programs should serve as the foundation for the achievement of HP 2010 goals for people with disabilities. 

Technical note
Edited excerpt from the 6.13 Working Paper: The needs of people with disabilities and caregivers should be addressed by public health activities.*  In a telephone survey, 23 percent of all U.S. households included at least one caregiver.  While not all people with disabilities are dependent on the services of a non-paid (usually a family member) or paid caregiver, meeting the needs of those who benefit from personal assistance cannot be easily separated from the needs of people who provide assistance.  Whether caring for infants, children, or adults with disabilities or for the increasing number of people who become activity-limited as they grow older, the caregiver is an important health component.

We acknowledge the merits of assessing the health needs of caregivers, and the value of health promotion programs designed to reach this large and diverse population.  However, adequate data regarding best practices to address these needs are currently unavailable.  Hence, we propose focusing on caregiver issues for a developmental objective and will respond to the strategic planning questions below in light of the identified health-related needs and infrastructure for people with disabilities across the life span. 

1. How practical are the targeted goals for implementation by the year 2010?
The goal to establish public health surveillance and health promotion programs for people with disabilities in all fifty states and the District is reasonable and measurable.  (See Concern #1)  

Assumptions 
We are defining public health surveillance and state health promotion programs for people with disabilities based on characteristics reflective of some/all of the existing 14 CDC-supported state-capacity grantees.  The expertise of those involved in existing programs should be used in expanding, deepening, and disseminating effective models.  

Concern #1: 
It will be necessary to moderate the potentially competing interests of vertical versus horizontal growth.  There was some support for seeing a smaller number of truly comprehensive, quality programs established towhich would develop and test best practices.  Thiese approach contrasts with that of developing  programs contrast with the51 potentially more superficial and less effective state programs.  At the same time, the objective currently calls for horizontal growth and such an approach is in line with a systematic, national response to the identified health disparities for people with disabilities.

Recommendation to manage Concern #1: 
Establish an interim benchmark of 25 states to have achieved this objective by 2005.  This would serve as a springboard for further expansion and development of 51 effective models by the target year 2010.

Concern #2:
It is acknowledged that the health and well-being of family caregivers is a critical issue.  However, we do not view as practical the achievement of the targeted objective of 51 public health surveillance and health promotion programs for caregivers by the year 2010.  Currently, there is no established mechanism for public-health surveillance of the health-related needs of caregivers; nor is there a defined locus for responding to identified needs, thus making this component of Objective 6.13 developmental in nature.  We do not currently know which issues are of most pressing concern to caregivers.  From a public health standpoint, the health and well-being of family caregivers is of critical importance.  There is extensive research on the physical/mental/emotional impact of family caregiving and we feel that at this developmental stage, helping to identifyprotect the priority health-related needs of caregivers is where the focus should be placed.  This may lead to support for enhanced coverage and improved employment supports for paid providers of care, rather than on issues such as home modification.  For example, there may be more interest in reimbursement, PCA [Marcia: does PCA = personal care assistants or attendants?  Don does not recognize it but thinks it is a govt programtrue?], for  home modification, or for assistive technology, etc., rather than other health-promotion activities specifically aimed at addressing the health and quality of life of caregivers.

The responsibility of the government agency relative to the needs of family caregivers is not well defined; nor does the existing agenda for family caregivers relate only to Objective 6.13.  For example, depression is a major issue for caregivers, and the topic of mental health is directly referred to or implied in many other objectives of Healthy People 2010 Chapter 6.  Should these objectives apply both to the caregiver as well as the person with a disability?

Recommendation to manage Concern #2:
We need to fully acknowledge the role of caregivers and develop an approach for identifying their health-related issues and responding to their health-promotion needs.  Support and potential integration of the interrelated issues of family caregiving should be recognized within the national agenda and the following programs within states: state disability and health; chronic disease; traumatic injury; birth defects and developmental disability; aging; and Children With Special Health Care Needs (CSHCN).
Family caregivers are included in Objective 6.13 because of the direct link between caregivers and disabled/chronically ill individuals.  Caregivers have their own needs related to their caregiving. 

Since there is no national precedent for a public health approach to the basic issues of family caregiving, some realistic goals might be:

1. Moving states and territories to acknowledge that the health/well-being of family caregivers is an important public health issue.  Also, this phenomenon impacts our entire health care delivery system because family caregivers are the predominant providers of care.

2. Develop a common assessment mechanism and gather other data across states using uniform methods.

Achievement of these goals would be a major accomplishment in the overall efforts toward the well-being of both people with disabilities and family caregivers. 

2. What are the major problems in addressing this objective?  

A. Resources
1. The financial resources currently available are insufficient.  States are unlikely to implement programs without dedicated funding for necessary infrastructure, staff, and the data to support those programs.  We need to establish a consensus regarding what constitutes best practices in state-level programs.

2. There is a lack of influential champions for these issues within both the public health and disability fields.

3. The resources available to supplement or substitute for family caregivers, such as paid personal care attendants (PCA) and respite care, are lacking.  

B. Data
1. Only 11 of the 14 currently funded state capacity-granted states collect data through BRFSS in a way that can be reported nationally.  The data that are available on the health-related needs and issues for people with disabilities should be more effectively disseminated.  (In addition, Puerto Rico, the Virgin Islands, and the Pacific Trust Territories must be included in all aspects of surveillance as well as programs and policies.)  

2. We need to define people with disabilities consistently in surveillance/data instruments (See Objective 6.1).

3. Most/all of our sampling/methods exclude the population of people with disabilities in institutional settings.  Methods often represent people with specific types of disabilities (e.g., hearing or cognitive impairments).

4. We need to define caregivers consistently in surveillance/data instruments and develop an operational definition of caregiving for the HP 2010 objectives.

5. There are people with activity limitations and caregivers who do not necessarily self-identify.

C. Perspective
1. The traditional bureaucracy-related issues as they pertain to this objective are problematic.  State programs are known for high staff turnovers and continual changes in political priorities.  Placement within the bureaucracy can be a benefit or a barrier to institutionalizing activities.

2. We need to develop a technical-assistance component in addition to the government to assist states in readiness.  A structure of responsibility for this element would need to be determined.

3. Public health tends to focus on categorical programs rather than social environments.  What is called for is a social-ecological approach that is inclusive of the person with a disability, caregivers, social supports (such as spiritual supports, employers), etc.  The approach used by WHO for the revision of its disability classification is such a perspective.

4. Within CDC and state health departments, there is limited recognition of the commonality of issues and potential for integrated surveillance and intervention approaches among disability and health programs and those focused on chronic disease, birth defects, developmental disabilities (DD), and injury (traumatic brain or spinal cord injury).

5. The CDC program/categorical hierarchy (i.e., diabetes, traumatic brain injury [TBI], spinal cord injury [SCI], cancer, cardiovascular disease [CVD], DD, birth defects) has not adequately recognized the issues of caregivers, and the program announcements do not currently address the needs of caregivers.  A cross-cutting approach is required. 

6. The health and well-being of family caregivers is a public health issue.  An unpaid health force is providing the majority of care.  The issues of family caregivers are inherently different than paid givers of care, as are the specific programs and supports that need to be put in place to promote caregivers own health.  Caregivers need to receive information about how to become more capable caregivers as well as information about the impact of caregiving on the health of the caregiver.

7. The whole emphasis on health promotion for people with disabilities is an emerging area of public health. 

8. At times there is tension between advocacy groups focusing on disabilities and those focusing on caregiving.  Points of common concern, as well as differences, should be communicated.  Where possible, join activities should be instituted. 

D. Partnerships, coalitions, and networks
1. We need to identify, nurture, and expand coalitions to advocate for addressing this objective at the national and state levels.  There needs to be greater lobbying for increasing resources for disability and health for both people with disabilities and caregiving families.

2. There is a tendency toward developing condition-specific responses, which can result in further fragmentation and competition among disability and chronic disease-oriented efforts.  We hope that in the future there will be more support for cross-disability approaches.

1. 
3. Currently there are no established caregiver agency/consistent networks at the state level.  This is a barrier to enabling caregiver emphasis as an integral, focused component of state disability and health programs.

3. Who are the governmental, nongovernmental, private and other Consortium members who could/should be partners in implementing this objective?

A. Easily identifiable partners are the public health community including national, state and community programs in chronic disease, such as those for cancer screening, womens health, cshcn, domestic violence, etc.  

B. In order to identify the best partners for meeting this objective, undertake an inventory of programs and resources (e.g., fitness providers, mental health programs) that already exist within the community.  Identify gaps as an outcome of the inventory.  

A. Easily identifiable partners are the public health community including national, state, and community programs in chronic disease such as those for cancer screening, womens health, CSHCN, domestic violence, etc.  As it pertains to family caregivers and moving the focus for states and territories to acknowledge the need to protect caregiver health, then logical partners would be currently functioning programs and schools of public health. 
C. In some states, there are active networks/advocates around caregiver issues.  We advise exploring the development of an integrated agenda that addresses the interrelated needs and issues of people with disabilities and caregivers.  

D. Universities are sources of disability- and epidemiological-data support.  

E. Centers for Independent Living, and disability advocacy and service organizations are essential partners.

F. Private corporations and companies who profit from services and products to people with disabilities and caregivers should be enlisted in underwriting health-promotion efforts. 

G. As it pertains to family caregivers, and to moving the focus for states and territories to acknowledge the need to protect caregiver health, logical partners would be currently functioning programs and schools of public health.

H. The American Public Health Association (APHA) should be encouraged to acknowledge that people with disabilities are a population that fares poorly in terms of health disparities. 

4. What are initial programs, current or envisioned, and/or policies that could help meet this objective?

A. CDC organization
There needs to be a clear commitment on the part of CDC to seek full funding for implementation of this objective.  The existing paradigm, which is noncategorical and lifespan-focused, must be maintained in order to build on the emerging state disability and health infrastructure. 
 
B. Data
1. Implement Objective 6.1: Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify people with disabilities. across the life span.  

2. In implementing the above from Objective 6.1 as it concerns identifying people with disabilities, consider that a parallel (a standardized set of questions) might also be explored to identify family caregivers. 
      
3. Develop a mechanism for systematically developing data reports comparing people with disabilities to those without, and differences among people with disabilities.based on disability.  There needs to be greater consistency across the states.  Data must be released externally to the advocacy community as well as used within the public health community.  We suggest translating the data for diverse audiences and disseminating the data to the general public and media.  Potential resources are NIDDR-funded projects, the Accessible Society Action Project, and National Center for the Dissemination of Disability Research (NCDDR). 

4. Develop publications/public health guidance that describes the implications and applications of the data to health-promotion interventions.

C. Technical assistance  
1. To develop improved readiness, provide technical assistance to nonfunded states or states at planning stages for programs and surveillance.

2. Fund a network for providing technical assistance/mentors for new states.

3. Give greater emphasis to sharing models and highlighting best practices.  Disseminate the lessons learned from the successful states and use those programs as models that should, and can, be replicated.

4. Develop mechanisms for increasing inter-state collaboration, especially around common programmatic issues.

D. Strategic planning
1. Better frame how work will benefit different constituency groups and undertake more aggressive social marketing to different potential partners.

2. Employ more people with disabilities for public health positions within national, state and community settings.  

3. Integrate the subject of disability into efforts to address health disparities and the health of minority populations.  Include and engage disability experts as consultants in shaping targeted efforts as well as efforts aimed at the general population.  

E. Targeted-emphasis Categoricalfunding 
In recognition of existing health disparities between people with and without disabilities in relation to many HP 2010 objectives for the nation, we highly recommend thatInclude governmental and nongovernmental funding agencies specifically include people with disabilities as a target population in RFPs.  Furthermore,  and the specific issues of this minority population should be reflected in the policies of anyrelevant public health programs. 

F. Promoting awareness
1. Develop mechanisms for promoting to state and federal policymakers at the state and federal levels an awareness of the public health issues related to people with disabilities.  This should include state health directors, legislators, legislative staff, and lobbyists.

2. Assist states in identifying partners (e.g., advocacy groups, community groups) who can advocate the establishment and enhancement of state programs.

G. HP 2010 objectives
1. Continue to publicize the HP 2010 objectives for people with disabilities, the use of disability as a demographic variable in related chapters, and the existence of Objective 6.13.  

2. Encourage the integration of a disability focus within broad-based state health planning efforts, especially those focused on eliminating disparities.

H. Training
1. Infuse public health training programs with disability content/curriculum in order to train the next generation of public health professionals (epidemiologists, health educators, program managers) with the knowledge base to become leaders in state-based programs.
2. Infuse health professional training programs with content/curriculum on the importance of health promotion for people with disabilities.

I. Disability community
1. Work with Centers for Independent Living (CILs) to integrate health promotion into their agenda.

2. Develop more effective outreach and health education to people with disabilities.  

3. Integrate a health focus that includes initiatives to increase access to work and health insurance for people with disabilities.

J. Information and education
Improve health-education and health-promotion materials for people with disabilities both in regard to content and approach.  We suggest developing new materials, encouraging general population-oriented materials to better reflect a disability focus, and establishing more effective dissemination channels for both people with disabilities and providers.

K. Cost-effectiveness
1. Demonstrate the benefits of secondary-conditions prevention and the benefits/potential cost-savings associated with health promotion for insurers and employers.

2. Ensure that those who might most benefit from health promotion/disease prevention efforts are not inadvertently excluded due to access and usability barriers.  (This could be achieved through implementation of Objective 6.10.)

5. Are adequate mechanisms in place for tracking progress towards meeting the targeted goals?  If not, what needs to be done to institute such tracking mechanisms?

A. Establish an interim measure
We recommend setting this measure at 25 states to have met this objective by 2005.

B. Surveillance and health promotion for caregivers
Develop a process to explore the options of tracking mechanisms to establish objectives, goals and benchmarks for caregivers.

C. Integration of tribes
Explore options for engaging Native American/tribal populations in work associated with meeting this objective.  Establish tracking mechanisms for expansion/inclusion of disability and health programs within tribes.  Consider collaboration with the Office of Indian Health Services. 

D. Evaluation of quality/effectiveness
We should go beyond a process count of the simple existence of state disability surveillance and state health promotion programs to address the following questions:  How do we define and measure the quality and comprehensiveness of such theprograms?  How can we better measure the impact of state-capacity programs, including ways to address health disparities, knowledge, and the involvement of the disability community?  How can we better measure the impact of state-capacity programs on knowledge and depth of involvement of the public-health community?  This will require the establishment of both objective and We need to include measurements for assessing thesubjective perceptionmeasurements of public impact.

6. Conclusion  
Full implementation of this objective will result in the refinement and broad dissemination of state-tested tools and approaches for decreasing disparities in health status, and health and wellness provision to people with disabilities.  As outlined, implementation of Objective 6.13 will facilitate significant progress for our nation over the next decade toward meeting HP 2010 objectives both within Chapter 6 and related chapters.

CLOSING PAPER:  WHERE DO WE GO FROM HERE?

Raymond Seltser, M.D., M.P.H.
Emeritus Dean, Emeritus Professor of Epidemiology
University of Pittsburgh Graduate School of Public Health

The material contained in the 13 workgroups reports is the core of this document.  An overview of the issues covered by the workgroup reports has been presented in the synthesis in the preceding chapter.  While this synthesis provides a snapshot of the material covered in the reports themselves, it is important to remember that the specific ideas in these 13 reports represent the combined input of an unusually dedicated and competent group of disability experts, and many of the ideas presented have enormous potential for shaping the direction of the strategic planning process needed to implement the goals of Healthy People 2010.

The December 2000 symposium was intended as the first step in this strategic planning process, and is to be followed by a larger conference that will convene representatives of the key stakeholders in the effort to reach the targets set for the 13 disability-related objectives.  The purpose of that conference will be to a) establish priorities for action; b) elaborate programs and policies which need to be undertaken; c) specify the actions that need to be taken to launch such programs and put appropriate policies in place; and d) recommend the appropriate administrative and logistical support needed to implement the strategic plan.

The conference participants will be divided into six (6) primary groups, each of which will be responsible for developing the strategic plan for the objectives included in their thematic group.  The objectives have been grouped according to the following six themes:

Data: Objectives 6.1 (Standard definition of people with disabilities in data sets) and 6.13 (Surveillance and health promotion programs) 

Children: Objectives 6.2 (Feelings and depression among children with disabilities) and 6.9 (Children and youth with disabilities included in regular education programs)

Social/emotional health: Objectives 6.3 (Feelings and depression interfering with activities among adults with disabilities), 6.4 (Social participation among adults with disabilities), 6.5 (Sufficient emotional support among adults with disabilities), and 6.6 (Satisfaction with life among adults with disabilities)

Participation/work: Objectives 6.8 (Employment parity) and 6.12 (Environmental barriers affecting participation)

Environment/accessibility: Objectives 6. 10, (Accessibility of health and wellness programs), 6.11 (Assistive devices and technology), and 6.12 (Environmental barriers affecting participation)

Caregivers/long-term care: Objective 6.7 (Congregate care of children and adults with disabilities)

Within each thematic group there will be subgroups that are responsible for developing specific actions to implement the workgroups recommendations.  These action strategies will be grouped according to the following categories: 

1. Data Collection
2. Coalition Building
3. Legislative Initiatives
4. Promotion and Initiation of Research
5. Public and Professional Education and Enlightenment

It is anticipated that the major portion of the time will be spent on obtaining consensus from the groups on the specific actions and recommendations that have been presented to each of the groups as Draft Policy Papers.  These papers will have been prepared and distributed well in advance of the conference. 

The specific proposals presented by each of the 13 workgroups represent the basis for the development of those Policy Papers; they are contained within the answers to Question IV, which was posed at the December 2000 symposium: What are initial programs, current or envisioned, and/or policies that could help meet this objective?

DATA SETS

Objectives 6.1 (Standard definition of people with disabilities in data sets) and 6.13 (Surveillance and health promotion programs)

For each of the following, specify the actions that need to be taken to launch such programs and put appropriate policies in place; establish priorities for action; and recommend the appropriate administrative and logistical support that will be needed to implement the strategic plan.

DATA COLLECTION
1. Immediately identify opportunities to begin tracking people with disability in major surveys.  Identify opportunities by creating an inventory of surveys and processes for target data collection (the timeframe for this activity is immediate and ongoing).  This relates to identifying health objectives not only in Chapter 6, but also in other HP2010 chapters that relate to people with disabilities.  Related tasks include enumerating the instruments by disability-related objective, contacting the parties responsible for achieving the health objective, and taking whatever steps are needed to add the disability-identification questions to these instruments.  The timeframe for this is short because of the need to identify at least one data point prior to mid-course review.  

2. Review and prioritize the other HP2010 objectives to identify those with the highest yield and highest priority for data collection.  Partners for this activity would be those listed in HP2010 as lead agencies on other objectives that specifically identify people with disabilities.  

3. Develop a mechanism for systematically developing data reports based on disability.  There needs to be greater consistency across the states.  Data must be released externally to the advocacy community, as well as used within the public health community.  We suggest translating the data for diverse audiences and disseminating the data to the general public and media.

COALITION BUILDING
1. Support Objective 6.1 with specific staff who have dedicated time for activities related to this agenda.  These activities will require public and private partners to conduct and monitor the progress of Objective 6.1.  For this reason, the workgroup requests the ongoing supervision of progress with Objective 6.1.  The lead agency on this list of partners would be CDC.  Additional partners might be NIDRR (Disability Statistics Rehabilitation Research and Training Center at UCSF) and academic research groups.

2. Develop a strategy to foster cooperation with other programs that previously have not linked or cooperated with the disability community and their objectives.  The traditional public health infrastructure has viewed the population with disability as either beyond its scope or the responsibility of other agencies.  Efforts are needed to persuade public health agencies that people with disabilities are a subset of the population and the health of people with disabilities is a public health concern.  This activity will require identifying incentives, awards, public relations programs and strategies, and advocates.  

3. Foster collaboration with and among objective-specific programs (e.g., diabetes programs).  

4. Develop mechanisms for increasing inter-state collaboration, especially around common programmatic issues. 

5. Assist states in identifying partners (e.g., advocacy groups, community groups) who can advocate for the establishment and enhancement of state programs.   

6. Work with CILs on integrating health promotion into their agenda.  

7. Explore options for engaging Native American/tribal populations in work associated with meeting this objective.  Establish tracking mechanisms for expansion/inclusion of disability and health programs within tribes.  Consider collaboration with the Office of Indian Health Services.

8. Develop mechanisms for promoting an awareness of the public health issues related to people with disabilities among policymakers at the state and federal levels.  This should include state health directors, legislators, legislative staff, and lobbyists.  

LEGISLATIVE INITIATIVES
1. Promote and educate Congress on disability-related issues and their overall relevance in health and human rights policies, including the need for data.  Partners for this activity include nonprofit private agencies and disability advocacy groups.  

2. There needs to be a clear commitment on the part of CDC to seek full funding for implementation of this objective.  The existing paradigm, which is noncategorical and lifespan-focused, must be maintained in order to build on the emerging state infrastructure. 

3. Insert language in government grant proposals and policies that promote the targeting of people with disabilities and reduction of health disparities as a subset of activity. 

4. Assist states in identifying partners (e.g., advocacy groups, community groups) who can advocate for the establishment and enhancement of state programs.

5. Encourage the integration of a disability focus within broad-based state health-planning efforts, especially those focused on eliminating disparities. 

6. Integrate a health focus with initiatives to increase access to work and health insurance for people with disabilities.

PROMOTE AND INITIATE RESEARCH 
1. Develop a research agenda for constructing a toolkit of optimal disability measures.  Develop new measures and address measurement issues such as validation.  While the consistent questions proposed above begin the process, this activity is intended to produce measures that are more completely based on the WHOs International Classification of Functioning, Disability, and Health (ICF).  

2. Crosswalk current tracking research.  Develop recodes for variables that will assist in interpretation among surveys.  An interpretation of the primary measures and other disability definitions must be undertaken.  

3. Promote research on the methods of estimating the prevalence of disability in undercounted groups (e.g., institutions, children, and among those with sensory impairment). 

4. Demonstrate the benefits of secondary-conditions prevention and the benefits/potential cost-savings associated with health promotion for insurers and employers. 

5. Surveillance and health promotion for caregivers: Develop a process to explore the options of tracking mechanisms to establish objectives, goals and benchmarks for caregivers. 

6. Evaluation of quality/effectiveness:  Go beyond a process count of the simple existence of state disability-surveillance and state health-promotion programs.  How do we define and measure the quality and comprehensiveness of the program?  How can we better measure the impact of state-capacity programs, including ways to address health disparities, knowledge and the involvement of the disability community?  How can we better measure the impact of state-capacity programs on knowledge and depth of involvement of the public health community?  Include measurements for assessing the subjective perception of public impact. 

PUBLIC & PROFESSIONAL EDUCATION AND ENLIGHTENMENT
1. Promote the value of viewing and defining disability as a demographic variable.  Promote the understanding of disability as a demographic descriptor with heterogeneity, similar to other grouped classifications such as ethnicity/race or sex.

2. Promote with other programs and public health entities (e.g., state health departments) the concept of identifying people with disability as a select population for HP2010 objectives, related to the goal of reducing health disparity.  This activity will require support through an identified or developed educational process.  Partners for this activity include NIDRR and the general public health community?not only as a partner but also as a focus for the activitys attention.  Targets for this activity include ASTHO and CSTE. 

3. Review and triage the published leading health indicators package for 
HP 2010 and identify areas where the disability community is overlooked.  Disability needs to be promoted as a demographic component for data reports and indicators, especially as it applies to disparities.  Target as partners the lead agencies of these indicators.  

4. Promote media and scientific dissemination of disability statistics to publications that include MMWR and other scientific and lay targets, particularly those having a broad public-health audience.  Partners for this activity include the Center for An Accessible Society

5. Fund a network for providing technical assistance/mentors for new states. 

6. Better frame how our work will benefit different constituency groups and undertake more aggressive social marketing to different potential partners.

7. Identify and recruit people with disabilities for employment in public health positions within national, state and community settings.  The subject of disability needs to be integrated into efforts to address health disparities and the health of minority populations.  These experts need to be included and engaged as consultants in shaping targeted efforts as well as those aimed at the general population. 

8. Infuse public health training programs with disability content/curricula in order to train the next generation of public health professionals (epidemiologists, health educators, program managers) with the knowledge base to become leaders in state-based programs.  Infuse health professional training programs with content/curricula on the importance of health promotion for people with disabilities. 

9. Improve health education/health promotion materials for people with disabilities both in regard to content and approach.  Establish dissemination channels for both people with disabilities and providers.


CHILDREN

Objectives 6.2 (Feelings and depression among children with disabilities) and 6.9  (Children and youth with disabilities included in regular education programs)

For each of the following, specify the actions that need to be taken to launch such programs and put appropriate policies in place; establish priorities for action; and recommend the appropriate administrative and logistical support which will be needed to implement the strategic plan.

DATA COLLECTION
1. Increase providers access to technology to enhance data collection (e.g., use of the Internet, Palm Pilots, other mechanisms to record data, or access information).  Electronic data entry should be piloted. 

2. Look at data from states that have already achieved this objective so that these programs may serve as models for other states. 

3. Look at dissemination mechanisms and develop them in more consumer-friendly formats. 

COALITION BUILDING
1. Implement mental health promotion programs for children with special health care needs through community-based settings including schools, faith-based communities, community clubs).  

2. Train multiple professional groups on mental health issues and needs. (includes ability to identify kids with conditions or risks). 

3. The Office of Special Education and Rehabilitative Services (OSERS) has several partnership projects involving the family, teachers, policy makers, school administrators, free appropriate public education (FAPE), and The IDEA Local Implementation by Local Administrators (ILIAD) Partnership that could be used as examples. 


LEGISLATIVE INITIATIVES
1. Adopt the UN Convention on the Rights of the Child, which defines response to the health needs of children as a basic societal responsibility.

2. Adopt a national policy recognizing the universal need of families of children with special health care needs for individualized supports.  Note that this concept builds upon, but goes beyond, the AAPs medical home concept.

3. Establish parity in the financing of mental and other health services.  Adopt funding policies to ensure that the way funding is distributed to states and local education agencies (LEAs) does not provide inadvertent disincentives for including children in regular classrooms.  

4. Review Medicaid funding and policy; the cost of doing paperwork outweighs the funds yielded.  

5. Review practice acts for various professions to see if they impact provision of services (e.g. delegation to other providers).  

6. Consider the impact of zero-tolerance educational policies (pertaining to violence) on the ability to bring medically related equipment to school (e.g., for diabetic care).  

7. Review the placement policies that are built upon IDEA and the importance of choice?that is, family/student choice.  

8. Emphasize reformulation of special education as a service, not a program.  

PROMOTE AND INITIATE RESEARCH
1. Replicate the Early Intervention model (which combines family services, family-to-family support and therapeutic services for the child in as integrated a setting as feasible) for other age groups.  Model may be particularly important for children and families at key transition points: preteen to teen, school to work.  

2. Formulate best-practice research and piloting, and synthesize what is the best practice to achieve these goals. 

3. Continue research in how technology can support delivery of care.  

4. The CDC should do an analysis of the total cost of maximizing educational needs of students with disabilities, and should conduct a study to evaluate the total cost of not maximizing optimal functioning of people with disabilities. 

PUBLIC AND PROFESSIONAL EDUCATION
1. Training of frontline providers is needed on the identification of children with mental health issues and needs. 

2. Government and societal sectors (including, but not limited to public health) need to recognize that child mental health is a shared responsibility, and not someone elses job.

3. Review school curricula; for example, curricula currently focus almost exclusively on academic skills, but do not incorporate functional academic and other life skills needed for productivity and independent living.  

4. Universal design: technology might benefit other students, not just those with disabilities (e.g., texts in alternative formats or those that are readily adapted to different levels and needs; teacher guides; variable presentation modes).  Develop a mindset that focuses on what would help everybody and is not merely tailored to students with disabilities.  Physical access: focus on universal design in modernization activities as well as new building.  

5. Public awareness campaigns: prepare families who do not have disabilities for the increasing presence of children with disabilities in regular education programs.

SOCIAL/EMOTIONAL HEALTH

Objectives 6.3 (Feelings and depression interfering with activities among adults with disabilities), 6.4 (Social participation among adults with disabilities), 6.5 ( Sufficient emotional support among adults with disabilities), and 6.6 (Satisfaction with life among adults with disabilities)

For each of the following, specify the actions that need to be taken to launch such programs and put appropriate policies in place; establish priorities for action; and recommend the appropriate administrative and logistical support that will be needed to implement the strategic plan.

DATA COLLECTION
1. Develop instruments and methods that can measure depression and stress across the population, including individuals with disabilities.

2. Given the data-driven nature of this entire effort, the workgroup strongly recommends that all survey and/or reporting instrumentation be expanded to improve their levels of sensitivity to racial, ethnic and cultural dimensions of the US population.  The workgroup asserted that national data sets serve mostly as beacons of social conditions rather than attempting to be true research instruments. 

3. The QOL data-collection instruments must be culturally sensitive.  Special efforts must be made to ensure that the random sample is truly reflective of the disability community.

4. Create data beacons within national instruments to identify decreasing interactions among target populations within community settings.  

5. Current national data set measurement instruments are too limited when focused on mental health.  

6. Measurement difficulties will arise because social integration and social isolation mean different things to different people due either to a too-strict definition or cultural norms.  

7. Conduct a national conference to develop consensus on a definition of Life Satisfaction along with recommendations for measurement. 

6. Provide safeguards to ensure that measurement instruments reflect responses from the individual with the disability and not a proxy. 

7. All 50 states need to use BRFSS. 

COALITION BUILDING
1. Develop a coalition of agencies to assess and address problems/solutions, and to develop a blueprint to accomplish parity.  

2. The workgroup suggests that involved partners devise methods of increasing emotional support within the family unit, and among family caregivers and other caregivers, for the purposes of peer supports and religious/spiritual support.  Activity management will vary at federal, state or local levels (i.e., governmental, nongovernmental, private, and commercial levels).  Certain federal and state groups and organizations, which act as enabling powers, will need to allow local activities to be designed to address these social integration issues.  Developing social integration programs may take considerable time, and thus may not easily stay up-to-date with the evolving needs of people with disabilities. 

3. Move all agencies and organization from liaisons of cooperation to liaisons of collaboration regarding disparities in general and social integration in particular. 

4. City and regional planning groups should be brought into the role of ensuring that building projects meet accessibility guidelines.

5. All recreation programs (city, county, YMCA, etc.) should be accessible and usable, and there should be a means of assessing the status and methods of implementing changes, and a method of monitoring the degree of change over time.   

6. The DOT should revisit their national assessments of access to transportation by households without cars in order to assess access to transportation by people with disabilities and the uses of transportation; include a minimum assessment of the effects of access, or its lack, on QOL issues.   

7. Create incentives for places of worship and other community-life organizations to reach out and support participation of people with disabilities.  

LEGISLATIVE AND POLICY INITIATIVES
1. Encourage reimbursement policies that would make prevention pay, such as Medicaid policies that provide adequate compensation for professional providers but that also incorporates reimbursement of peer counselors who deliver demonstrated programs (e.g., Seligmans Learned Optimism and other programs, such as Living Well with a Disability). 

2. Equalize Medicaid policies to offer mental health services that address this objectives problem by providing reimbursement for individual and group services. 

3. City and regional planning groups should be brought into the role of ensuring that building projects meet accessibility guidelines. 

4. Put more resources into enforcement of current legislation to promote full access and social participation of people with disability (i.e., disability civil-rights laws). 

5. Provide meaningful tax credits and incentives for businesses on research, development and service programs to help achieve social participation of people with disabilities. 

6. Increase caps in Medicare/Medicaid and private insurance policies for assistive services and equipment. 

7. Reduce the cap on medical expenditures for tax deductions for people with disabilities. 

8. Provide tax deductions/credits and loan policies for people with disabilities for procurement of goods and services that promote social participation (e.g., vans, assistance services, assistive technology, etc.). 

9. Include universities and colleges in eligibility for community development grants for integrated social participation of people with disabilities.  

10. Create incentives for places of worship and other community-life organizations to support participation of people with disabilities. 

11. Develop new or amended policies related to access that recognize the importance of a three-part definition that includes physical, time and opportunity aspects, which promote inclusion.  

12. Pass into legislation the proposed MICASSA bill.  
13. Federal and state governments must identify and remove existing disincentives to family and community living (e.g., losing health care when you work a real job).  

14. The federal government should commit to a policy of people being able to age in place so that services come to people rather than making people move to where the services are provided.  This policy and principle is well established in aging research literature, and should also benefit people with disabilities as they age.  

15. Federal and state governments must develop commitments and policies to ensure an adequate workforce.  

16. Dramatically increase the amount of affordable, accessible housing, and assistance with housing modifications and equipment. 

17. Any individual with a disability, or family with a disabled member, who is eligible for family or community support should receive those supports within a reasonable period (90 days).

PROMOTE AND INITIATE RESEARCH
1. Develop instruments and methods that can measure depression and stress (related to cognitive and communicative impairments, e.g., learning domain) within the population of individuals with disabilities. 

2. All recreation programs (city, county, YMCA, etc.) should be accessible, and there should be a means of assessing the status and methods of implementing changes, and a method of monitoring the degree of change over time.  

3. Investigate, document and disseminate best practices in the for-profit corporate sector for universal design.  

4. Promote technology transfer research and development.  

5. Devise survey/reporting measurements responsive to the breadth and diversity of social/emotional support definition; one that is sensitive to cultural and ethnic diversity for the monitoring of people with or without disability experiencing decreasing social integration.  

6. Create and assess a method of increasing emotional support within the family unit, family caregivers, other caregivers, peer support, and religious/spiritual support.  

7. Conduct a national conference to develop consensus on a definition of life satisfaction along with recommendations for measurement.  

8. Advocate for research on federally funded universal design zones.  Everything in that zone would be environmentally stellar for people with disabilities.  This could serve as a control trial to test how a barrier-free and accessible environment affects the life satisfaction of people with disabilities.  The control group would be different but measured in a similar city that does not possess the treatment variables.  Measuring differences in life satisfaction reports could serve to enlighten those who could make a difference.  

PUBLIC AND PROFESSIONAL EDUCATION
1. Use peer interventionists to teach self-management therapy for behavioral management of depression.  Training for large groups could be done through CILs.  

2. Web-based self-management needs to be developed but there should be certified sites that present useful information for consumers, family, and providers.  Model these efforts on procedures that are used by APA, JCAHO, etc.  Increase consumer awareness and training such that there is greater understanding and potential for evaluating information on the Web that purports to treat mental health.  

3. Providers and others need awareness of symptoms and reinforcement for referrals.  

4. Provide training in disability issues to cross-cutting professional service providers so that they come to understand the risks and response strategies.  

5. Encourage/require the health care professions to include assessment of social participation/support (as well as mental and physical health) as part of routine care; this holds implications for training in the medical and health care fields and links to overall health. 

6. Training programs for health care and educational professionals should implement courses to enable their students to reassess their biases toward individuals with disabilities.     

7. Employer-based wellness programs need to include components that address disability and the needs of people with disabilities.  This is consistent with employer movements to maintain employees as a cost-management and productivity strategy.   

8. The media need to be rewarded for their progress and continue to be exhorted to provide positive portrayal of disability to the broad public and, by inclusion, by people with disabilities.  

9. Investigate, document and disseminate best practices in the for-profit corporate sector for universal design.  

10. Promote broader provision of interpreter services to include social activities of publicly funded conferences and meetings as well as recreational activities.   

11. Encourage understanding of the needs for emotional support as a community issue.  

12. Build disability awareness across institutional settings/practitioners(e.g., medical, educational, employment and commercial settings).  

13. Market the message of social integration to minority and culturally diverse populations.  

14. Bring public relations agencies to a conference and reframe their image of people with disabilities.  Conduct a sensitivity training, for example, looking at the lives of individuals with disabilities.  

15. Encourage CARF, JCAHO, and the other accreditation organizations to include specific standards regarding the tracking of life satisfaction in existing program evaluation and quality assurance tools.  

16. Target journalism students for education on disability issues.  Encourage people with disabilities to enter journalism professions. 


ENVIRONMENT/ACCESS

Objectives 6. 10 (Accessibility of health and wellness programs), 6.11 (Assistive devices and technology), and 6.12 (Environmental barriers affecting participation)

For each of the following, specify the actions that need to be taken to launch such programs and put appropriate policies in place; establish priorities for action; and recommend the appropriate administrative and logistical support that will be needed to implement the strategic plan.

DATA COLLECTION
1. Integrate with current data collection activities and foster inclusion of the disability-identifier questions (ICF projects, BRFSS, National Immunization Survey [NIS], Youth Risk Behavior Survey [YRBS], NCHS). 

2. Encourage HCFA to include functional assessment on patient encounter forms.  The measurement system should be grounded in the concept of participation, looking at activities, choice, frequency, satisfaction, access to technology, and type of technology used/needed.  Create a universal encounter form to collect information regarding the need for and actual use of technology.

3. Include assessment of environmental barriers in BRFSS.   

4. Develop a standardized national measurement process for objectively assessing community environments, and enact legislation to implement common data collection.  

COALITION BUILDING
Search for other options for health and wellness funding. What is available in the private sector? 

LEGISLATIVE INITIATIVES
1. Expand Medicaid funding for health and wellness.   

2. Create incentives for programs and facilities for ADA compliance (e.g. tax deductions for inclusion; and health and wellness programming and accessibility; wrap-around federal credits; fitness activity credits).   

3. Include criteria for accreditation standards for professions (all aspects of health, wellness, etc.).   

4. Tax credits: make them available for individuals and for companies; tax code changes, federal and state; coverage and payments for innovations in technology development.

5. Advocate for ADA and IDEA enforcement by the Department of Justice.   

6. Institute objective environmental barrier assessments by health departments, beginning with health care facilities, but expanding to schools, work places, and the community in general.   

7. Create a presence on disability in the White House to review all public policy with regard to its impact on people with disabilities, and coordinates national policy on ADA compliance and reducing environmental barriers to participation.

8. Develop a standardized national measurement process for objectively assessing community environments, and enact legislation to implement common data collection.   

9. Shift to systemic solutions for reducing environmental barriers in much the same way that anti-tobacco campaigns have shifted from assisting individual smokers with smoking cessation to advocating for smoke-free environments.   

PROMOTE AND INITIATE RESEARCH
1. Establish standards/guidelines/policies for a  Code of inclusion OR Code of accessibility. 

2. Develop a prototype for collecting evidence that assistive technology effects change in societal participation.  Examples are the collection of DME and augmentative communication data regarding technology and participation, and related expenditures. 

3. Conduct literature reviews/meta-analyses on current measures based on the participation concept, prior surveys on technology, and use-disuse/abandonment of technology.  

4. Conduct studies to identify and develop emerging technologies.   

5. Encourage NIH cohorts to include people with disability and track their need for/use of technology; identify the need as well as which technology is actually awarded.  

6. Apply public health methodologies to a review of existing environmental barriers data in an effort to target environmental interventions with the greatest potential impact.   

7. Investigate the range of human functioning among the total population with implications for environmental design.   

8. Investigate specific examples of environmental factors having an effect on the health, participation and quality of life of people with disabilities.   

PUBLIC AND PROFESSIONAL EDUCATION
1. Strengthen the information center or clearinghouse for Standards and Guidelines of Accessibility of Facilities and Programs (NCPAD).

2. Provide for professional certification of facilities and individuals.  

3. Raise awareness on the demand side; provide how-to information.   

4. Promote programs and facilities development of alternate format access to information about health and wellness opportunities.   

5. Highlight communities that are particularly effective in improving community environments.   

6. Implement universal design principles in the curricula of schools of design, architecture, and planning.   

7. Develop a public relations campaign, with the assistance of the National Ad Council, targeting attitudes toward people with disabilities.  Incorporate the message that universal design is good for everyone while being especially helpful to people with disabilities in increasing participation and choice.  Raise expectations of what people with disability can and should do.    

8. Disseminate all public health material in multiple formats.   

9. Expand the perspective of service providers to incorporate the broader environmental context.  

10. Shift to systemic solutions for reducing environmental barriers in much the same way that anti-tobacco campaigns have shifted from assisting individual smokers with smoking cessation to advocating for smoke-free environments.   

11. Address the issue that ADA is not in compliance in courtrooms.  Often when a person with a disability has been selected to serve on a jury duty, they discover that the courtroom is not accessible.

PARTICIPATION/WORK

Objectives 6.8 (Employment parity) and 6.12 (Environmental barriers affecting participation)

For each of the following, specify the actions that need to be taken to launch such programs and put appropriate policies in place; establish priorities for action; and recommend the appropriate administrative and logistical support that will be needed to implement the strategic plan

DATA COLLECTION
Surveillance: Coordinate with agencies such as SSA and BLS to use data to monitor employment, income, and benefit levels of people with disabilities, including severe disabilities with higher risks for unemployment (e.g., people with mental illness), and by race, ethnicity, gender, and education.
      
COALITION BUILDING
Work with other federal, state and local agencies, advocacy groups, and universities to increase social participation.  

LEGISLATIVE INITIATIVES
1. Provide economic incentives (i.e., tax credits) to businesses to encourage hiring people with disabilities. 

2. Establish a stronger mandate to comply with ADA.  

3. Eliminate disincentives to work by maintaining Medicaid/Medicare coverage under employment. 

4. Obtain educational opportunities and support from ADA enforcement.  

5. Revisit health care for people with disabilities as a program of equity. 

6. Increase enforcement of ADA.   

7. Develop a support system during difficult economic times; that is, a system to protect people with disabilities from job loss when the economy contracts. 

8. Develop model state legislation through the National Association of Insurance Commissioners. 

9. Integrate health benefits and carve-outs with workers compensation administrators and SSDI, SSI.  

10. Provide small group reinsurance for high-risk individual employees.  


PUBLIC AND PROFESSIONAL EDUCATION

1. Provide educational programs ranging from an introduction to disability to how to provide reasonable accommodations to employers (e.g., brochures, American Management Association courses, Certified Employee Benefits Specialist [CEBS] courses).  

2. Increase vocational, secondary and post-secondary educational opportunities through an incentive program for people with disabilities and educational or training institutions.  

3. Encourage vocational rehabilitation programs to emphasize preparing individuals for
21st century jobs.  


CAREGIVERS/LONG-TERM CARE

Objective 6.7 (Congregate care of children and adults with disabilities)

For each of the following, specify the actions that need to be taken to launch such programs and put appropriate policies in place; establish priorities for action; and recommend the appropriate administrative and logistical support that will be needed to implement the strategic plan.

DATA COLLECTION
1. All states should have internal tracking systems and designate responsible agencies for reporting a common set of data on community/institutional services; grants should be available to assist those states without developed systems to establish systems more like those of exemplary states.  

2. Determine the possibility for and costs of a national annual reporting system of key indicators.   

3. Review data from states that have already achieved this objective to serve as models for others; that is, determine the best practice states.

COALITION BUILDING
Encourage partnerships among government, people with disabilities, and their allies in changing the culture to view people with disabilities as full and valued members.  

LEGISLATIVE INITIATIVES
1. Ensure that dollars are attached to people, not to beds or programs, and that people with disabilities and those they trust (family members, neighbors, friends, service providers) are controlling resources.  

2. Federal and state governments must identify and remove existing disincentives to family and community living (e.g., losing health care when you work a real job).  

3. The federal government should commit to a policy of people being able to age in place such that services come to people rather than making people move to where the services are provided. 

4. Federal and state governments must develop commitments and policies to ensure an adequate workforce.  

5. Any individual with a disability, or family with a disabled member, who is eligible for family or community support should receive those supports within a reasonable period (90 days).  

6. The nation must develop the long-term financial commitment to funding long-term care, especially because aging baby boomers?both people with disabilities and caregivers?have needs that will dramatically increase in the years ahead.  

PROMOTE AND INITIATE RESEARCH
1. Studies on reducing congregate care provide valuable advice on careful deinstitutionalization planning.

2. Study the characteristics, actions, policies, organizational structure, financing, etc. of leader states and communities, and the ways that these can be replicated.  

PUBLIC AND PROFESSIONAL EDUCATION
1. Provide wider opportunities for individuals and families to use programs that support community and family living, including, but not limited to:
* Personal care options and other types of personal assistance and supported living
* Supported employment
* Family support (respite care, in-home support to families, specialized day care)
* Alternative family arrangements (shared parenting)
* Specialized foster care (supporting the concepts of permanency planning)
* Behavioral support and crisis response
* Accessible, affordable health care, health promotion, and prevention
* Individual service coordination (independent case management)
* Transition planning and supports  

2. There is a need for better understanding and enforcement of accessibility laws throughout the US.   

3. Some states have developed road maps to show how to achieve important community and family support objectives (e.g., Michigan has no children in congregate care).  We need to highlight the states that have made progress in important areas, and provide technical assistance from leader states and communities to states that have further to go.  Provide training, show how to shift the funds, and develop the collective will to follow the road map.  

4. Support the establishment and expansion of graduate programs in disability studies in colleges and universities.

SYMPOSIUM PARTICIPANTS BY WORKGROUP
Vision for the decade symposium, 2000

Objective 6.1: Data

Mike Adams
Battelle
c/o DBDCDDH
Centers for Disease Control and Prevention
4770 Buford Hwy, F-34
Atlanta, GA 30341
Phone: 770-488-7154
mja1@cdc.gov

Barbara Altman
National Center for Health Statistics
Presidential Building
6525 Belcrest Road, P-08
Hyattsville, MD 20782
Phone: 301-458-4654
bea5@cdc.gov

Elena Andresen
Associate Profressor of Epidemiology
Department of Community Health
School of Public Health
St. Louis University 
3663 Lindell Blvd.
St. Louis, MO 63108-3342
Phone: (314) 977-8130
(800) 782-6769
FAX: (314) 977-8150
andresen@slu.edu
Vincent A. Campbell
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
770-488-7684
vbc6@cdc.gov

William D. Frey 
Senior Study Director
WESTAT
1650 Research Boulevard
Rockville, MD 20850
Phone: (301) 610-5198
FAX: (301) 251-8289
freyw1@westat.com

Corinne Kirchner
Director of Policy Research and Program
  Evaluation
American Foundation for the Blind
11 Penn Plaza
Suite 300
New York, NY 10001
Phone: (212) 502-7640
FAX: (212) 502-7773
corinne@afb.net


Objective 6.2: Child Mental Health


Deborah Allen
Massachusetts Department of Public Health
250 Washington Street
Boston, MA  02108
Phone: (617) 624-5959
deborah.allen@state.ma.us

Bryna Helfer
Easter Seals
700 13th Street NW, Suite 200
Washington, DC 20005
Phone: 202-347-3066
bhelfer@opa.easter-seals.org

Krista Kutash
Associate Professor and Deputy Director
Research and Training Center for Children's
  Mental Health 
Louis de la Parte Florida Mental Health
  Institute
University of South Florida
13301 Bruce B. Downs Blvd.
Tampa, FL 33612-3807
Phone: (813) 974-4661 
FAX: (813) 974-6257
kutash@fmhi.usf.edu


Donald J. Lollar
National Center on Birth Defects and
  Developmental Disabilities
Centers for Disease Control and Prevention
4770 Buford Highway, F-34
Atlanta, GA 30341
Phone: (770) 488-7094
FAX: (770) 488-7156
dcl5@cdc.gov

Rune J. Simeonsson 
University of North Carolina at Chapel Hill
North Carolina Office on Disability and
  Health
FPG Child Development Center
Sheryl-Mar Building, CB #8185
Chapel Hill, NC 27599-8185
Phone: (919) 966-6634
FAX: (919) 966-0862
rune_simeonsson@unc.edu

Patricia M. Sullivan
Center for Abused Children with Disabilities
Boys Town National Research Hospital
555 N. 30th Street
Omaha, NE 68131
Phone: (402) 498-1656
Fax: (402) 498-1654
sullivant@boystown.org


Objective 6.3: Adult Mental Health


John Hough
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: 770-488-7830
jph7@cdc.gov

G. Dean Ericson
Neuropsychologist and Rehabilitation Psychologist 
Shepherd Center
2020 Peachtree Street, NW
Atlanta, GA 30309
Phone: (404) 352-2020
FAX: 404-367-1236
dericson@mindspring.com

Jayne Lux
Practice Directorate
American Psychological Association
750 First Street, NE
Washington, DC 20002
Phone: (202) 336-5881
FAX: (202) 336-5797
jlux@apa.org
Suzanne McDermott
Associate Professor
University of South Carolina 
  School of Medicine
Department of Family and Preventive Medicine
6 Richland Medical Park
Columbia, SC 29208
Phone: (803) 434-2445
FAX (803) 434-7529
suzanne.mcdermott@palmettohealth.org

Rosemary B. Hughes
Assistant Professor, Department of Physical 
  Medicine & Rehabilitation 
Associate Director, Center for Research on 
  Women with Disabilities
Baylor College of Medicine
3440 Richmond Ave, Suite B
Houston, TX 77046
Phone: 713) 960-0505
Phone: (713) 961-3555
rhughes@bcm.tmc.edu

Thomas Seekins
Director, Research and Training Center
Attn: Morah Raynock
Rural U. of Montana
52 Corbin Hall
Missoula, MT 59812
Phone: (406) 243-2654
(406) 243-2349 (fax)
ruraldoc@selway.umt.edu


Objective 6.4: Social Participation


Stephen Corbin
Special Olympics, Inc.
1325 G Street, NW, Suite 500
Washington, DC 20005
Phone: (202) 824-0283
FAX: (202) 824-0397
scorbin@specialolymics.org

June Isaacson Kailes 
Disability Policy Consultant 
6201 Ocean Front Walk 
Suite 2 
Playa del Rey, CA 90293-7556 
Phone: (310) 821-7080 
FAX: (310) 827-0269  
jik@pacbell.net 
http://www.jik.com
Bryan Kemp
Director, Rehabilitation Research and
  Training Centers on Aging With a
  Disability
Rancho Los Amigos National Rehabilitation
  Center
7601 East Imperial Highway
Downey, CA 90242-3496
562 401-7402
bkemp@hsc.usc.edu

Burton D. Pusch
UAP Faculty, UAMS: Peds
501 Woodland Drive, Suite 210
Little Rock, AK 72201
Phone: (501) 682-9900
(501) 682-9901 (fax)
puschburtond@exchange.uams.edu


Objective 6.5: Emotional Support


Larry Lorenzo
700 Dooley
Almorgordo, NM 88310
Phone: (505) 434-9758
Cell: (505) 644-8651

Donna Scandlin
North Carolina Office on Disability and
  Health
Frank Porter Graham Child Development
   Center
University of North Carolina at Chapel Hill
521 South Greensboro Street
CB #8185
Chapel Hill, NC 27599-8185
Phone: (919) 966-0868
FAX: (919) 966-0862 
donna_scandlin@unc.edu

Thomas E. Stripling
Senior Health Data Analyst
Paralyzed Veterans of America
801 - 18th Street, NW
Washington, DC 20006
Main phone: (800) 424-8200
Direct line: (202) 416-7668 
FAX: (202) 331-1657
toms@pva.org
Denise Tate
Department of Rehabilitation Psychology
University of Michigan
Ann Arbor, MI
Phone: (734) 936-7052
FAX: (734) 763-0971
dgtate@umich.edu

JoAnn Thierry
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: 770-488-7097
jxt4@cdc.gov

Barbara Schwentor
Holland Community Hospital
Rehabilitation Services Department
602 Michigan Ave. 
Holland, MI  49423
Phone: (616) 494-4119
FAX: (616) 669-3833
barbas@hoho.org


Objective 6.6: Life Satisfaction
	
Cheryl Bushnell
Massachusetts Department of Public Health
250 Washington St.,  4th Floor
Boston, MA  021084619
Phone: 617-6245967
cheryl.bushnell@state.ma.us

Cyndi Jones
The Center for an Accessible Society
2980 Beech Street
San Diego, CA 92102-1534
Phone: (619) 232-2727 ext. 111
FAX: (619) 234-3155 
cjones@accessiblesociety.org

Allison (Sunny) Roller
Program Manager
Physical Medicine and Rehabilitation
University of Michigan Medical Center
IG202 University Hospital
1500 E. Medical Center Drive
Ann Arbor, MI  48109-0050
Phone: (734) 936-9474
(313) 763-0574 (fax)
elsol@mailgs2.pmr.med.umich.edu

Priscilla R. Sanderson
Director, American Indian Rehabilitation
  Research and Training Center  
Arizona University Affiliated Program
Institute for Human Development
Northern Arizona University
PO Box 5630
Flagstaff, AZ 86011-5630
Phone: (520) 523-4791
FAX: (520) 523-9127
priscilla.sanderson@nau.edu

Doug Schwentor
Lakeshore Center for Independent Living
426 Century Lane
Holland, MI  49423
Phone: (616) 396-5326
FAX: (616) 396-3220
dougs@egl.net

Thomas Strax
Professor and Chair, Department of Physical
  Medicine and Rehabilitation
UMDNJ/RWJ Medical School
Medical Director
JFK/Johnson Rehabilitation Institute
65 James Street
Edison, NJ 08818
Phone: (732) 321-7070
tstrax@jfktlBOCVAN.com


Objective 6.7: Congregate Care

Harlan Hahn
717 11th Street
Santa Monica, CA 90402
Phone: (310) 395-5804
Alternate phone: (213) 740-8122
FAX: (310) 434-9214 
hahnharlan@aol.com

Richard Hemp
University of Illinois at Chicago
Department of Disability and Human Development
1640 West Roosevelt Road, CM/C626
Chicago, IL 60608-6904
Phone: (312) 413-1976
rickhemp@uic.edu

Charlie Lakin
U. of Minnesota, RTC on Community Living
212 Pattee Hall
150 Pillsbury Drive SE
Minneapolis, MN 55455
Phone: (612) 624-6328
lakin001@umn.edu

Pat Puckett
Statewide Independent Living Council
1431-C McLendon Drive
Decatur, GA 30033
Phone: (770) 270-6860
FAX: (770) 270-5957
silcga@mindspring.com
Lisa Sinclair
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: (770) 488-7667
lvs4@cdc.gov

Sue Swenson
Administration on Developmental Disabilities
370 L'Enfant Promenade, 300F
Washington, D.C. 20447
Phone: 202 690-5806
sswenson@acf.dhhs.gov

Lesa Walker
Texas Department of Health
CSHCN Division
1100 West 49th Street
Austin, TX 78756-3179
512 458-7111 x2567
Lesa.Walker@TDH.state.TX.US


Objective 6.8: Employment

Richard C. Baron
Project Director
OMG Center for Collaborative Learning
1528 Walnut Street, Suite 805
Philadelphia PA 19102
Phone: (215) 732-2200
FAX: (215) 732-8123
rick@omgcenter.org

Larry Burt
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: 770-488-7081
lrb1@cdc.gov

Charles E. Drum
Oregon Office on Disability and Health
Oregon Institute on Disability and 
  Development
Oregon Health Sciences University
PO Box 574
Portland, OR 97207-0574
Phone: (503) 494-8047
TTY: (503) 494-7373 
FAX: (503) 494-6868 
e-mail: drumc@ohsu.edu
Michael Marge
American Association of Health and Disability
449 Old Orchard Circle
Millersville, MD  21108
Phone: (410) 965-0149
(410) 965-3308 (fax)
mmarge@a-znet.com

Susan E. Palsbo
Associate Director
Center for Health & Disability Research
National Rehabilitation Hospital
MedStar Research Institute
1016 16th St. NW, Suite 400
Washington, DC 20036-5724
Phone: (202) 466-1904 
FAX: (202) 466-1911
susan.e.palsbo@medstar.net

Chrisann Schiro-Geist
Professor and Director, 
Disability Research Institute, 
University of Illinois at Urbana-Champaign.
158 Rehabilitation Education Center
MC-575
1207 S. Oak Street
Champaign, IL 61820
Phone: (217) 265-0279
chrisann@uiuc.edu


Objective 6.9: Education

Polly Arango
Algodones Associates
PO Box 338
1452 Highway 313
Algodones, NM 87001
Phone: (505) 867-3159
FAX: (505) 867-5026
Polly@algodonesassociates.com 

Wendy Coster
Chair, Department of Occupational Therapy
Sargent College of Health & Rehabilitation
  Sciences 
Boston University 
635 Commonwealth Avenue
Boston, MA 02215
Phone: (617) 353-7518
FAX: (617) 353-2926
wjcoster@bu.edu

Carol Hughes
Public Relations Officer
Center for Rehabilitation Technology
Georgia Institute of Technology
490 10th Street
Atlanta, GA 30318
Phone: (404) 894-4283
FAX: (404) 894-9320
carol.hughes@arch.gatech.edu

George Jesien
Executive Director
American Association of University Affiliated Programs (AAUAP)
8630 Fenton Street, Suite 410
Silver Spring, MD 20910
Phone: (301) 588-8252
FAX: (301) 588-2842
gjesien@aauap.org
Marlene Simon
Associate Division Director
Research to Practice Division 
Office of Special Education Programs 
US Department of Education 
330 C Street, SW; Switzer Bldg., 
  Room 3517 
Washington, DC 20202-2641
Phone: (202) 205-9089
FAX: (202) 205-8105 
marlene.simon@ed.gov

Camille Smith
Developmental Disabilities Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-15
Atlanta, GA 30341
Phone: (770) 488-7402
cas0@cdc.gov

Janet Valluzzi
ASPH Intern
George Washington University
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: (770) 488-7080
valluzzi@gwu.edu

Objective 6.10: ADA/Facilities

Dick Duncan
Center for Universal Design
College of Design, NCSU
 Box 8613
Raleigh, NC  27695-8613
Phone: 919 515 8557
rc_duncan@ncsu.edu

Jane Gay
Iowa Program for Assistive Technology
100 Hawkins Drive
Iowa City, IA 52242
Phone: (319) 356-4463
jane-gay@uiowa.edu

Mark Johnson
Shepherd Center
2020 Peachtree Street, NW
Atlanta, GA 30303
Phone: (404) 350-7490
FAX: (404) 350-7341
mark_johnson@shepherd.org

Mike Jones
Shepherd Center
2020 Peachtree Street, NW
Atlanta, GA 30303
Phone: (404) 352-2020
mike_jones@shepherd.org
Chris Kochtitzky
Office of Planning, Evaluation, and Legislation
National Center for Environmental Health
Centers for Disease Control and Prevention
4770 Buford Highway, F-29
Atlanta, GA 30341
Phone: (770) 488-7114
csk3@cdc.gov

Linda McClain
13 Las Huertas Road
Placitas, NM 87043
Phone: (505) 771-0821
24hiking@msn.com

James H. Rimmer
Associate Professor
Director, National Center on Physical
  Activity and Disability and
 the Center on Health Promotion Research
  for People with Disabilities
University of Illinois at Chicago
Department of Disability and Human
  Development
1640 West Roosevelt Road, M/C626
Chicago, IL 60608-6904
Phone: (313) 413-9651
FAX: (312) 355-4058
Pager: (312) 556-8915
jrimmer@uic.edu

Objective 6.11: Assistive Technology


Juliana Cyril
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: (770) 488-7426
FAX: (770) 488-7075
zdq4@cdc.gov

Alexandra Enders
University of Montana
Rural Institute on Disability
52 Corbin Hall
Missoula, MT
Phone: 406-243-2655
enders@selway.umt.edu

Nedra Gillette
American Occupational Therapy Foundation
4720 Montgomery Lane
PO Box 31220
Bethesda, MD 20824
Phone: (301) 652-2682
FAX: (301) 656-3620
ngillette@aotf.org
David B. Gray
Research Professor 
Program In Occupational Therapy
Washington University School of Medicine
Campus Box 8505
4444 Forest Park Parkway
St. Louis, MO  63108
Phone: (314) 286-1658
FAX: (314) 286-1601
grayda@msnotes.wustl.edu

Gregg Howard
Vice President, Reimbursement and 
  Disability Association Relations
Independence Technology
40 Technology Drive
Warren, NJ 07059
Phone: (908) 412-2210
FAX: (908) 412-2205
ghoward@indus.jnj.com

Kent Waldrep
President and CEO
Kent Waldrep National Paralysis Foundation
16415 Addison Road, Suite 550
Addison, TX 75001
Main: 1 (800) 925-2873
Phone: (972) 248-7100
FAX: (972) 248-7313 
(877) SCI-CURE
1-800-925-2873
KWaldrep@KWnpf.org

Objective 6.12: Environmental Barriers

John Crews
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: (770) 488-7668
wzc0@cdc.gov

Gail Finkel
FG Consortium
205 - 270 Roslyn Road
Winnipeg, Manitoba
CANADA R3L 0H3
Phone: (204) 453-1294
FAX:  (204) 453-6378
gfinkel@escape.ca

Yhetta Gold
FG Consortium
211 Montrose Street
Winnipeg, Manitoba
CANADA R3M 3L9
Phone: (204) 488-1121
FAX: (204) 488-9319 
ymgold@pcs.mb.ca

Susan Kinne
Center for Disability Policy & Research
146 N. Canal Street
Suite 313
Seattle, WA  98103
Phone: (206) 685-4769
susaki@u.washington.edu

Gale Whiteneck
Research Director
Craig Hospital
3425 S. Clarkson
Englewood, CO 80110
Phone: (303) 789-8204
FAX: (303) 789-8441
gale@craig-hospital.org

Bob Williams
Deputy Assistant Secretary for Disability, Aging, and Long Term Care
Department of Health and Human Services
424E.2 Humphrey Building
200 Independence Ave, SW.
Washington, DC 20201
Phone: (202) 690-6443
bobrw@bellatlantic.net

Objective 6.13: State Programs

Gail Hunt
National Alliance for Caregiving
4720 Montgomery Lane
Suite 642
Bethesda, MD 20814
Phone: (301) 718-8444
gailhunt.nac@erols.com

David Keer
Program Manager
US Department of Education
National Institute on Disability and 
  Rehabilitation Research
330 C Street S.W.
Switzer Building Room 3431
Washington, D.C. 20202
Phone: (202) 205-5633
david.keer@ed.gov

Suzanne Mintz
National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD 20895
Phone: (301) 942 6430
FAX: (301) 942-2302
suzanne@nfcacares.org

Marcia Roth
North Carolina Office on Disability
  and Health 
1928 Mail Service Center
Raleigh, NC 27699-1928
Phone: (919) 715-2505
FAX: (919) 733-2997  
marcia.roth@ncmail.net
Joe Smith
Disability and Health Branch
Centers for Disease Control and Prevention
4770 Buford Highway, F-35
Atlanta, GA 30341
Phone: (770) 488-7082
jos4@cdc.gov

Norm White
Manager, Disability and Health Program
Injury and Disability Programs
Bureau of Health Promotion  KDHE
109 SW 9th, Suite 602, Mills Building
Topeka, KS 66612-1271
Phone: (785) -296-8060
FAX: (785) 296-8645
TDD: 1-800-332-6262
nwhite@kdhe.state.ks.us

Coleen Boyle
Director
Division of Birth Defects, Child
  Development, and Disability and Health
NCEH, CDC
4770 Buford Highway,  F-34
Atlanta, GA 30341
Phone: (770) 488-7366
cab3@cdc.gov

Participants not assigned to a particular workgroup: 

Raymond Seltser
Emeritus Dean
Emeritus Professor of Epidemiology
University of Pittsburgh Graduate School 
  of Public Health
4701 Willard Avenue, Apt. 1714
Chevy Chase, MD 20815
Phone: (301) 652-4760
rseltser@email.msn.com

Tony Fowler
Deputy Director
Division of Birth Defects, Child Development, and Disability and Health
NCEH, CDC
4770 Buford Highway, F-34
Atlanta, GA 30341
Phone: (770) 488-7192
anf2@cdc.gov

Sharon Meek
992 Hearthstone Place
Stone Mountain, GA
Phone: 404-297-4642
slmeek@mindspring.com

APPENDICES


I.         Healthy People 2010 Chapter 6 Disability and Secondary Conditions

II.       Glossary of Abbreviations and Acronyms

III.     Leading Health Indicators

IV.    HealthierUS: The Presidents Health and Fitness Initiative 
         (State Data on People with Disabilities)

V.     Healthy People 2000 Disparity Data Table 1

VI.  Healthy People 2010 Disparity Data Table 2



APPENDIX I.

Healthy People 2010, Chapter 6: Disability and Secondary Conditions

Goal

Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.

Overview
Because disability status has been traditionally equated with health status, the health and well-being of people with disabilities has been addressed primarily in a medical care, rehabilitation, and long-term care financing context.  Four main misconceptions emerge from this contextual approach: (1) all people with disabilities automatically have poor health, (2) public health should focus only on preventing disabling conditions, (3) a standard definition of disability or people with disabilities is not needed for public health purposes, and (4) the environment plays no role in the disabling process.  These misconceptions have led to an under-emphasis of health promotion and disease prevention activities targeting people with disabilities and an increase in the occurrence of secondary conditions (medical, social, emotional, family, or community problems that a person with a primary disabling condition likely experiences).
Issues
Challenging these misconceptions will help to clarify the health status of people with disabilities and address the environmental barriers that undermine their health, well-being, and participation in life activities.  A broad array of health promotion activities are relevant to all people experiencing a disability, whether they are categorized by racial or ethnic group, gender, and primary conditions or diagnoses, such as major depression, cerebral palsy, diabetes, spinal cord injury, or fetal alcohol syndrome.  The similarities among people with disabilities are as important as or more important than the differences among clinical diagnostic groups.  Caregiver issues also have been considered, as well as environmental barriers.  Environmental factors affect the health and well-being of people with disabilities in many ways.  For example, weather can hamper wheelchair mobility, medical offices and equipment may not be accessible, and shelters or fitness centers may not be staffed or equipped for people with disabilities.  Compliance with the Americans with Disabilities Act (ADA) would help overcome some of these barriers. A crosscutting goal is to eliminate disparities with the nondisabled population. 
The International Classification of Functioning and Disability (ICIDH-2), developed by the World Health Organization (WHO) with the input of numerous nationsincluding the United Statesprovides uniform language and a framework for describing functioning, health, and disability status among all people.[1]  This framework clarifies definitional issues and includes environmental factors.
Trends
An estimated 54 million people in the United States, or nearly 20 percent of the population, currently live with disabilities.[2]  Data for the period 1970 to 1994 suggest that the proportion is increasing.[3]  The increase in disability among all age groups indicates a growing need for public health programs serving people with disabilities.
From 1990 to 1994, disability rates increased among youth under age 18 years.[3]  There was a 33 percent increase in activity limitations among girls, from 4.2 percent to 5.6 percent, and a 40 percent increase in activity limitations among boys, from 5.6 percent to 7.9 percent.
Among adults aged 18 to 44 years, there was a 16 percent increase in activity limitations, from 8.8 percent in 1990 to 10.3 percent in 1994.[3]  This increase suggests that 3.1 million more people aged 18 to 44 years were limited in 1994 than in 1990.
The absolute number of adults aged 65 years and older with disabilities increased from 26.9 million in 1982 to 34.1 million in 1996.  Because the total number of adults aged 65 years and older increased even faster, the proportion of those with disabilities declined from 24.9 percent in 1982 to 21.3 percent in 1994.[3]  However, the rise in numbers indicates a growing need for programs and services to serve this older population.
The direct medical and indirect annual costs associated with disability are more than $300 billion, or 4 percent of the gross domestic product.[4]  This total cost includes $160 billion in medical care expenditures (1994 dollars) and lost productivity costs approaching $155 billion.
The health promotion and disease prevention needs of people with disabilities are not nullified because they are born with an impairing condition or have experienced a disease or injury that has long-term consequences.[5]  People with disabilities have increased health concerns and susceptibility to secondary conditions.  Having a long-term condition increases the need for health promotion that can be medical, physical, social, emotional, or societal.
People who have activity limitations report having had more days of pain, depression, anxiety, and sleeplessness and fewer days of vitality during the previous month than people not reporting activity limitations.[6]  Increased emotional distress, however, does not arise directly from the persons limitations.  The distress is likely to stem from encounters with environmental barriers that reduce the individuals ability to participate in life activities and that undermine physical and emotional health.  In view of the increased rates of disability among youth, it is particularly important to target activities and services that address all aspects of health and well-being, including promoting health, preventing secondary conditions, and removing environmental barriers, as well as providing access to medical care.  For an older person with a disability, it is important to target worsening coexisting conditions that may intensify and thus threaten general well-being.  For example, declining vision combined with declining hearing can greatly impair mobility, nutrition, and fitness.[7]
Disparities
Disability can be viewed as a universal phenomenon everyone experiences at some time.[8]  Disability also can be viewed as representing a minority of the population, in that people with disabilities may be less visible, undercounted, and underserved.[9]  As a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.  People with disabilities may experience lack of access to health services and medical care and may be considered at increased risk for various conditions.



Few data systems identify people with disabilities as a subpopulation.  Disparities need to be identified to plan appropriate public health programs.  Despite the paucity of data, some disparities between people with and without disabilities have been noted.  These disparities include excess weight, reduced physical activity, increased stress, and less frequent mammograms for women over age 55 years with disabilities.[10]
Opportunities
Health promotion programs that focus on improving functioning across a spectrum of diagnoses and a range of age groups are effective in reducing secondary conditions and outpatient physician visits among people with disabilities.[11], [12], [13]  For example, a focus on improving muscle tone, flexibility, and strength can accrue benefits for mobility-impaired people in wheelchairs and mobility-impaired people with arthritis.[14]  For people with communication disabilities and disorders, interventions can improve access to health-enhancement programs.  People with sight impairments can have access to readable job applications, food labels, and medications.  People with hearing impairments can have access to televised or videotaped exercise programs that are captioned or signed by interpreters depicted within an inset of a video screen.  Often, the most effective interventions may be environmental rather than medical.
Many health promotion interventions already in place for the population at large may be easily adapted to the needs of people with disabilities.  New strategies can be influenced by results from studies that describe risk factors for secondary conditions or protective factors against additional impairments.  For example, the number of cases of secondary osteoporosis among able-bodied women and their range of bone mineral density deficits can be estimated by using existing Federal data sets.  The degree to which women exercise and ingest calcium or estrogen supplements also can be estimated, leading to measurements of the influence of both risk and protective factors associated with osteoporosis in the able-bodied population.  Because women with mobility impairments experience an elevated risk for secondary osteoporosis at earlier ages, their risk factors, including diminished bone mineral density, and their potential protective factors, including optimal calcium or estrogen supplementation and types of exercise, become critically important epidemiologic parameters.[15], [16]  The results of investigations of secondary osteoporosis already influence health promotion strategies among able-bodied women.  Similar investigations can augment the development of health promotion strategies among women with disabilities. 
Current guidelines provide opportunity to design health promotion interventions targeting people with disabilities that accommodate ongoing evidence-based evaluation[17] and demonstrate cost-effectiveness.[18], [19]  For example, clinical interventions that focus on appropriate and timely medical care can be equally accessible for people with and without disabilities.  Mammography screening is recommended every 1 to 2 years, with or without an annual clinical breast examination, for able-bodied women aged 50 to 69 years.[20]  This recommendation also can be adapted for women with disabilities.  Clinical providers, however, must first recognize the reasons women with disabilities often refrain from seeking mammography services, such as the lack of adaptive equipment on mammography screening machines or unfamiliarity with the needs of people with disabilities expressed by clinicians.  Counseling to prevent injuries among all adults also is recommended.  For example, men and women with disabilities, especially those with skeletal insufficiencies or calcium deficits, are at increased risk for fractures.  Adding bone mineral screening and fitness counseling during clinical encounters may be beneficial in preventing injuries.  In these ways, evidence-based health promotion and disease prevention programs can be developed, implemented, and evaluated to target the health and injury disparities between people with and without disabilities. 
Health promotion interventions for people with disabilitiesin the community, clinical settings, or elsewhereshould include culturally and linguistically appropriate elements.
Interim Progress Toward Year 2000 Objectives
Healthy People 2000 did not have a chapter specifically establishing health objectives for people with disabilities.  However, some objectives targeted people with disabilities, including leisure-time physical activity, use of community support programs by people with severe mental disorders, treatment for depression, activity limitations associated with chronic conditions and back conditions, and receipt of recommended clinical preventive services.  A progress review held in January 1997 showed that none of these specific objectives relevant to people with disabilities had been met,10 and parity with the nondisabled population will continue to be monitored.
People with disabilities reporting no leisure-time physical activity declined from the 1985 baseline of 35 percent to 29 percent in 1995, short of the target of 20 percent for 2000.  In addition, the review noted several disparities: 40 percent of people with disabilities aged 20 years and older reported being overweight compared with 35 percent of the general population and short of the goal of 25 percent; 49 percent of people aged 18 years and older with disabilities reported adverse health effects from stress compared with 34 percent of the general population; and clinical preventive services showed disparities for data on tetanus boosters (56 percent versus 59 percent for the general population), Pap tests (69 percent versus 77 percent of women aged 18 years and over in 1994), and breast exams and mammograms (50 percent versus 56 percent for women aged 50 years and over).
Note: Unless otherwise noted, data are from the Centers for Disease Control and Prevention, National Center for Health Statistics, Healthy People 2000 Review, 199899.


Healthy People 2010Summary of Objectives
Disability and Secondary Conditions
Goal: Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the US population.
Number
Objective Short Title
6.1
Standard definition of people with disabilities in data sets
6.2
Feelings and depression among children with disabilities
6.3
Feelings and depression interfering with activities among adults with disabilities
6.4
Social participation among adults with disabilities
6.5
Sufficient emotional support among adults with disabilities
6.6
Satisfaction with life among adults with disabilities
6.7
Congregate care of children and adults with disabilities
6.8
Employment parity
6.9
Inclusion of children and youth with disabilities in regular education programs
6.10
Accessibility of health and wellness programs
6.11
Assistive devices and technology
6.12
Environmental barriers affecting participation in activities
6.13
Surveillance and health promotion programs


Healthy People 2010 Objectives



6-1.

Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify "people with disabilities."

Target: 100 percent.
Baseline: No Healthy People 2010 surveillance instruments include a standard set of questions that identify people with disabilities in 1999.
Target setting method: Total coverage.
Data source: CDC, NCEH.
The call for statistics on people with disabilities is longstanding and increasing. Various Federal agencies have attempted to collect these data in several research areas.[21] Two separate issues exist regarding data collection: (1) using different operational definitions of disability and (2) not collecting information from people with disabilities during surveys. None of the federally funded surveys attempting to collect data on people with disabilities is using the same definition of disability. This lack of standardization has made it difficult to (1) identify and include individuals with a disability, (2) measure the nature and extent of disability in the United States, (3) assess the impact of various disabilities on the persons ability to participate in society, (4) assess the extent of secondary conditions among people with disabilities, and (5) identify environmental barriers to participation and risk factors for poor health in this population. 
The issue of not including people with disabilities is reflected in the initial survey design. Most studies are not designed to include, target, and analyze data on people with disabilities. People with disabilities could be included as a select population if, for example, the data collection method ensured appropriate access and outreach.
To remedy these gaps, a set of survey questions has been developed and is being tested to identify individuals with varying degrees of disability in terms of activity limitations.[22] This short set of questions may be placed in the core of all Healthy People surveillance instruments that collect demographic data to include and standardize information on people with disabilities. On the basis of standardization and inclusion in the Nations disability data collection activities, the call for disability statistics may be satisfied. Once collected, these data will help government policymakers, consumers and advocates, researchers, and clinicians make better and informed choices to promote the health status and well-being of people with disabilities.







6-2.

Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.
Target: 17 percent.
Baseline: 31 percent of children and adolescents aged 4 to 11 years with disabilities were reported to be sad, unhappy, or depressed in 1997.
Target setting method: 45 percent improvement (parity with children and adolescents without disabilities in 1997).
Data source: National Health Interview Survey (NHIS), CDC, NCHS.

Children and Adolescents Aged 4 to 11 Years, 1997
Reported To Be Sad, 
Unhappy, or Depressed

With 
Disabilities
Without 
Disabilities*

Percent
TOTAL
31
17
Race and ethnicity
American Indian or Alaska Native
DSU
DSU
Asian or Pacific Islander
DSU
13
Asian
DSU
16
Native Hawaiian and other Pacific Islander
DSU
DSU
Black or African American
DSU
16
White
31
17
Hispanic or Latino
32
16
Not Hispanic or Latino
30
17
Black or African American
DSU
17
White
31
18
Gender
Female
32
16
Male
30
18
Family income level
Poor
37
20
Near Poor
31
17
Middle/high income
27
17


Geographic location
Urban
27
17
Rural
39
16
DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
*The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.





6-3.

Reduce the proportion of adults with disabilities who report feelings such as sadness, unhappiness, or depression that prevent them from being active.

Target: 7 percent.
Baseline: 28 percent of adults aged 18 years and older with disabilities reported feelings that prevented them from being active in 1997 (age adjusted to the year 2000 standard population).
Target setting method: 75 percent improvement (parity with adults aged 18 years and older without disabilities in 1997).
Data source: National Health Interview Survey (NHIS), CDC, NCHS.

Adults Aged 18 Years and Older, 1997
Reported Feelings That 
Prevent Activity

With 
Disabilities
Without 
Disabilities*

Percent
TOTAL
28
7
Race and ethnicity
American Indian or Alaska Native
22
15
Asian or Pacific Islander
30
7
Asian
DSU
6
Native Hawaiian and other Pacific Islander
DSU
14
Black or African American
31
8
White
28
7

Hispanic or Latino
40
9
Not Hispanic or Latino
27
7
Black or African American
31
8
White
27
6
Gender
Female
30
8
Male
26
6

Family income level
Poor
38
13
Near Poor
30
10
Middle/high income
21
6
Education level (aged 25 years and older)
Less than high school
34
10
High school graduate
29
7
At least some college
25
5
Geographical location
Urban
29
7
Rural
26
6




DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.
Children and adults with disabilities and their families face issues of coping, adapting, adjusting, and learning to live well with the disabilitya dynamic, ongoing process. Good mental health, including refusing to internalize the social stigma of disability and developing a positive attitude and strong self-esteem, is a key ingredient to overcoming these issues.[23] Improving mental health status among people with disabilities and their families will help address psychological barriers and enhance their ability to participate fully in society.[24]




6-4.

Increase the proportion of adults with disabilities who participate in social activities.
Target: 100 percent.
Baseline: 95.4 percent of adults aged 18 years and older with disabilities participated in social activities in 1997 (age adjusted to the year 2000 standard population).
Target setting method: Total participation (parity with adults aged 18 years and older without disabilities in 1997).
Data source: National Health Interview Survey (NHIS), CDC, NCHS.


Adults Aged 18 Years and Older, 1997
Participation in Social Activity

With 
Disabilities
Without 
Disabilities*

Percent
TOTAL
95.4
100.0
Race and ethnicity
American Indian or Alaska 
Native
87.4
100.0
Asian or Pacific Islander
99.6
100.0
Asian
99.5
100.0
Native Hawaiian and other Pacific Islander
100.0
100.0
Black or African American
95.0
99.8
White
95.6
100.0

Hispanic or Latino
93.9
100.0
Not Hispanic or Latino
95.5
100.0
Black or African American
95.0
99.8
White
95.7
100.0
Gender
Female
95.2
99.9
Male
95.7
100.0
Family income level
Poor
93.1
99.9
Near Poor
95.8
99.9
Middle/high income
96.5
100.0
Education level (aged 25 years and older)
Less than high school
94.1
99.9
High school graduate
94.8
99.9
At least some college
96.0
100.0
Geographic location
Urban
95.3
100.0
Rural
95.6
99.9
DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.
People with disabilities report significantly lower levels of social participation compared with people without disabilities.[25] Participating in social activities routinely requires personal interaction with the environment, a component of life that is vital to the well-being of all humanity. ICIDH-2, the International Classification of Functioning and Disability, highlights the importance of participating in social activities as a measurable outcome of living well with a disability.1 The ICIDH-2 framework indicates that the environment should be examined as a barrier to participation.
Social participation can include activities such as volunteering, shopping, going to the movies, or attending sporting events. Targeting increased participation in regular social activities such as traveling, socializing with friends and family, attending church or community events, and voting can result in improved functional status and well-being.



6-5.

Increase the proportion of adults with disabilities reporting sufficient emotional support.

Target: 79 percent.
Baseline: 71 percent of adults aged 18 years and older with disabilities reported sufficient emotional support in 1998 (data from 11 States and the District of Columbia; age adjusted to the year 2000 standard population).
Target setting method: 11 percent improvement (parity with adults aged 18 years and older without disabilities in 1998).
Data source: Behavioral Risk Factor Surveillance System (BRFSS), CDC, NCCDPHP.
Adults Aged 18 Years and Older, 1998
Reported Sufficient 
Emotional Support*

With 
Disabilities
Without 
Disabilities**

Percent
TOTAL
71
79
Race and ethnicity
American Indian or Alaska Native
56
72
Asian or Pacific Islander
49
66
Asian
DSU
DSU
Native Hawaiian and other Pacific Islander
DSU
DSU
Black or African American
53
68
White
74
82
Hispanic or Latino
44
68
Not Hispanic or Latino
72
80
Black or African American
DNA
DNA
White
DNA
DNA
Gender
Female
70
79
Male
70
78
Education level (aged 25 years and older)
Less than high school
58
70
High school graduate
74
76
At least some college
74
83




DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*Data are from 11 States and the District of Columbia.
**The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.
Emotional support often is derived from a persons social support systems. Two hypotheses suggest that social support helps a person cope with stress and that supportive relationships are a protective factor in various life situations.[26] With the information gained by monitoring the personal perspective, the United States may better meet the needs of people with disabilities.





6-6.

Increase the proportion of adults with disabilities reporting satisfaction with life.

Target: 96 percent.
Baseline: 87 percent of adults aged 18 years and older with disabilities reported satisfaction with life in 1998 (data from 11 States and the District of Columbia; age adjusted to the year 2000 standard population).
Target setting method: 10 percent improvement (parity with adults without disabilities in 1998).
Data source: Behavioral Risk Factor Surveillance System (BRFSS), CDC, NCCDPHP.


Adults Aged 18 Years and Older, 1998
Reported Satisfaction 
With Life*

With 
Disabilities
Without 
Disabilities**

Percent
TOTAL
87
96
Race and ethnicity
American Indian or Alaska Native
78
92
Asian or Pacific Islander
78
98
Asian
DSU
DSU
Native Hawaiian and other Pacific Islander
DSU
DSU
Black or African American
83
92
White
88
96

Hispanic or Latino
80
93
Not Hispanic or Latino
87
96
Black or African American
DNA
DNA
White
DNA
DNA
Gender
Female
87
95
Male
86
96
Education level (aged 25 years and older)
Less than high school
84
94
High school graduate
87
95
At least some college
89
97




DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*Data are from 11 States and the District of Columbia.
**The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.
Satisfaction with life is associated with the more general term quality of life, which is a personal evaluation of ones own position in numerous dimensions of life, including physical, emotional, social, spiritual, environmental support, and level of independence.[27] Monitoring the life satisfaction of people with disabilities, as well as that of the broader population, allows an opportunity to evaluate societys progress in accommodating the needs of people with disabilities.





6-7.

Reduce the number of people with disabilities in congregate care facilities, consistent with permanency planning principles.
Target and baseline:
Objective
Reduction in People With 
Disabilities in Congregate 
Care Facilities
1997 
Baseline
2010 
Target


Number of People
6-7a.
People aged 22 years and older 
in 16 or more bed congregate 
facilities
93,362
46,681
6-7b.
People aged 21 years and under in congregate care facilities
24,300
0
Target setting method: 50 percent improvement for 6-7a; total elimination for 6-7b.
Data source: Survey of State Developmental Disabilities Directors, University of Minnesota.
Many people with activity limitations or cognitive impairments need ongoing and long-term assistance, yet some do not require institutional care.[28] From the 1970s through the 1990s, States began reducing the size of and closing State institutions that served people with mental retardation or developmental disabilities. This social, political, and economic movement resulted in a dramatic growth in the total number of individuals served in community residential settingsfrom 5,000 in 1960 to 255,117 in 1996.[29], [30] This movement, coupled with increases in life expectancy and an expanding elderly population, resulted in the development of several community-based and in-home assistance programs, such as home-delivered meals, hospice care, and homemaker and home-health services. The goal to increase home and community-based care will broaden health and lifestyle choices for people with disabilities and their families.[31]
Much of this expansion in community services is funded through the Medicaid Home and Community-Based Services (HCBS) Waiver Program, a Federal-State partnership authorized in 1981 under Title XIX of the Social Security Act. Between 1990 and 1997, the HCBS Program demonstrated a 25.8 percent increase in benefits per person.[30] Despite this dramatic growth to support home and community-based care, in 1993, only 11 percent of long-term Medicaid expenditures and 5.3percent of total Medicaid expenditures went toward community-based care.[32] The other sources of support for community-based long-term care are Medicare, Title III of the Older Americans Act, and the Social Services Block Grant.[32]



6-8.

Eliminate disparities in employment rates between working-aged adults with and without disabilities.

Target: 82 percent.
Baseline: 52 percent of adults aged 21 through 64 years with disabilities were employed in 199495.
Target setting method: 58 percent improvement (parity with adults without disabilities in 199495).
Data source: Survey of Income and Program Participation (SIPP), U.S. department of commerce, bureau of the census.

Adults Aged 21 through 64 Years, 199495
Employment of People With 
Disabilities
Employment of People Without Disabilities*

Percent
TOTAL
52
82
Race and ethnicity
American Indian or Alaska Native
41
77
Asian or Pacific Islander
48
78
Asian
DNC
DNC
Native Hawaiian and other Pacific Islander
DNC
DNC
Black or African American
37
77
White
DNA
DNA

Hispanic or Latino
45
76
Not Hispanic or Latino
DNA
DNA
Black or African American
DNA
DNA
White
57
84
Gender
Female
46
75
Male
60
90
Education level
Less than high school
34
69
High school graduate
54
81
At least some college
63
83
DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
*The total represents the target. Data for population groups by race, ethnicity, gender, and socioeconomic status are displayed to further characterize the issue.
The ability to work has implications for economic and social self-sufficiency, for full inclusion and integration into society, and for personal self-esteem. Work and disability are understood best within the context of a persons abilities and the role of accommodation, accessibility, and legal mandates. The Presidential Task Force on Employment of Adults with Disabilities emphasized the need for a coordinated and aggressive national policy to address the many components of work and disability.[33] Changes in economic policies and benefits underscore the need to continue to examine and address the structural, social, and psychological deterrents to work for some people with disabilities.
In 199495, employment rates varied depending on degree of disability.  For people aged 21 through 64 years with no disability, the rate was 82 percent, whereas those with a nonsevere disability had a rate of 77 percent, and those with a severe disability had a rate of 26 percent. Analyses of rates by gender indicate similar patterns.[2] Moreover, employment patterns for people with disabilities mirror general social patterns of employment rates for age, race, and ethnicity.[34] Education has a positive association with employment for all people, although the association is strongest for adolescents and adults with a work disability.



6-9.

Increase the proportion of children and youth with disabilities who spend at least 80 percent of their time in regular education programs.

Target: 60 percent.
Baseline: 45 percent of children and youth aged 6 to 21 years with disabilities spent at least 80 percent of their time in regular education programs in the 199596 school year.
Target setting method: 33 percent improvement. (Better than the best will be used when data are available.)
Data source: Data Analysis System (DANS), U.S. Department of Education, Office of Special Education.

Data for population groups currently are not analyzed.

This objective aims to improve the well-being of students with disabilities by encouraging academic and learning opportunities and nonacademic social and emotional experiences that can facilitate normal growth and development, postsecondary educational attainment, independent living skills, and economic participation as adults. Serving students with disabilities in regular nonspecial education classrooms is a concern that cuts across the goals of many Federal agencies. The current target of the Office of Special Education and Rehabilitative Services is that 60percent of children and youth with disabilities aged 6 through 21 years will be reported by the States as being served in the regular education classroom at least 80 percent of the time. In support of the target, the 1997 Amendments to the Individuals with Disabilities Education Act states that to the maximum extent appropriate, children and youth with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled.[35]



6-10.

(Developmental) Increase the proportion of health and wellness and treatment programs and facilities that provide full access for people with disabilities.
Potential data source: National Independent Living Centers Network.
For people with disabilities to have the opportunity for healthy lives, both physically and emotionally, programs and facilities that offer wellness and treatment services must be fully accessible. Effective enforcement of the Americans with Disabilities Act can improve services for people with disabilities and help prevent secondary disabilities.



6-11.

(Developmental) Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed.

Potential data source: National Health Interview Survey (NHIS), CDC, NCHS.
In 1990, a one-time survey showed that 2.5 million people said they needed assistive technology that they did not have.[36] The inability to pay for such technology was the main reason given for the unmet need. Assistive technology can be critical in the lives of people with disabilities; thus, technology need, availability, and use must be studied.[37] Technology can aid the independence and self-sufficiency of people with disabilities and can enable people to work, attend school, and participate in community life. Without assistive technology, people with disabilities may become dependent and isolated. 



6-12.

(Developmental) Reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities.

Potential data source: Behavioral Risk Factor Surveillance System (BRFSS), CDC, NCCDPHP.
The focus on measuring the environmental impact on people with disabilities echoes the underlying theme of the disability rights movement and the ADA.[38] Both argue that the most important outcome for people with disabilitiesin fact, for all people in the United Statesis their full participation as active, involved, and productive members of society. Indeed, this participation is the implicit outcome for the overarching Healthy People goals to achieve a healthier life and eliminate disparities.
A special 1999 Colorado Behavioral Risk Factor Surveillance System (BRFSS) survey showed that compared to 43 percent of people without disabilities, 55 percent of adults aged 18 years and older with disabilities reported encountering environmental barriers daily or weekly and/or barriers that were very problematic.[39] Similar data will be collected from several other States.
Full participation cannot be achieved without eliminating environmental barriers found within architectural structures, technology, organizational policies and practices, and social attitudes and without moving toward universal design and nondiscriminatory elements. Thus public health agencies need to measure not only the nature and extent of disability in the United States but also the extent to which environmental barriers and universal design elements impede or facilitate social participation.



6-13.

Increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers.

Target and baseline:
Objective
Increase in Public Health 
Surveillance and Health Promotion Programs for People With 
Disabilities and Caregivers
1999 
Baseline
2010 
Target


Number
6-13a.
States and the District of Columbia
14
51 
6-13b.
Tribes
Developmental

Target setting method: Total coverage.
Data sources: Tribal, State, and District of Columbia reports; Office on Disability and Health, CDC.
The needs of people with disabilities and caregivers should be addressed by public health activities. In a telephone survey, 23 percent of all U.S. households included at least one caregiver.[40] While not all people with disabilities are dependent on the services of an unpaid (usually a family member) or paid caregiver, meeting the needs of those who benefit from personal assistance cannot be easily separated from the needs of people who provide assistance.[41] Whether caring for infants, children, or adults with disabilities or for the increasing number of people who become activity-limited as they grow older, the caregiver is an important health component.[42]

Related Objectives From Other HP2010 Focus Areas

1.
Access to Quality Health Services






1-1.

People with health insurance

1-4.

Source of ongoing care

1-5.

Usual primary care provider

1-6.

Difficulties or delays in obtaining needed health care

1-16.

Pressure ulcers among nursing home residents



2.
Arthritis, Osteoporosis, and Chronic Back Conditions






2-3.

Personal care limitations

2-5.

Employment rate

2-8.

Arthritis education 

2-11.

Activity limitations due to chronic back conditions



3.
Cancer






3-9.

Sun exposure and skin cancer

3-11.

Pap tests

3-12.

Colorectal cancer screening

3-13.

Mammograms





4.
Chronic Kidney Disease






4-2.

Cardiovascular disease deaths in people with chronic kidney disease

4-7.

Kidney failure due to diabetes






5.
Diabetes






5-1.

Diabetes education

5-2.

New cases of diabetes

5-3.

Overall cases of diagnosed diabetes

5-4.

Diagnosis of diabetes

5-9.

Foot ulcers

5-10.

Lower extremity amputations






7.
Educational and Community-Based Programs






7-1.

High school completion

7-3.

Health-risk behavior information for college and university students

7-6.

Participation in employer-sponsored health promotion activities

7-11.

Culturally appropriate and linguistically competent community health promotion programs

7-12.

Older adult participation in community health promotion activities




9.
Family Planning






9-2.

Birth spacing

9-4.

Contraceptive failure

9-7.

Adolescent pregnancy




12.
Heart Disease and Stroke






12-1.

Coronary heart disease (CHD) deaths

12-7.

Stroke deaths

12-9.

High blood pressure

12-10.

High blood pressure control

12-11.

Action to help control blood pressure

12-12.

Blood pressure monitoring

12-13.

Mean total blood cholesterol levels

12-14.

High blood cholesterol levels

12-15.

Blood cholesterol screening






14.
Immunization and Infectious Diseases






14-22.

Universally recommended vaccination of children aged 19 to 35 months

14-24.

Fully immunized young children and adolescents

14-26.

Children participating in population-based immunization registries

14-29.

Influenza and pneumococcal vaccination of high-risk adults




16.
Maternal, Infant, and Child Health






16-1.

Fetal and infant deaths

16-2.

Child deaths

16-3.

Adolescent and young adult deaths

16-4.

Maternal deaths

16-6.

Prenatal care

16-9.

Cesarean births

16-10.

Low birth weight and very low birth weight

16-11.

Preterm births

16-13.

Infants put to sleep on their backs

16-16.

Optimum folic acid levels

16-17.

Prenatal substance exposure

16-19.

Breastfeeding

16-21.

Sepsis among children with sickle cell disease

16-22.

Medical homes for children with special health care needs

16-23.

Service systems for children with special health care needs




17.
Medical Product Safety






17-3.

Provider review of medications taken by patients






18.
Mental Health and Mental Disorders






18-4.

Employment of people with serious mental illness

18-9.

Treatment for adults with mental disorders




19.
Nutrition and Overweight






19-1.

Healthy weight in adults

19-2.

Obesity in adults

19-3.

Overweight or obesity in children and adolescents

19-4.

Growth retardation in children

19-5.

Fruit intake

19-6.

Vegetable intake

19-7.

Grain product intake

19-8.

Saturated fat intake

19-9.

Total fat intake

19-10.

Sodium intake

19-11.

Calcium intake

19-12.

Iron deficiency in young children and in females of childbearing age 

19-13.

Anemia in low-income pregnant females

19-17.

Nutrition counseling for medical conditions

19-18.

Food security



20.
Occupational Safety and Health 






20-1.

Work-related injury deaths




21.
Oral Health






21-1.

Dental caries experience

21-2.

Untreated dental decay

21-3.

No permanent tooth loss

21-4.

Complete tooth loss

21-5.

Periodontal disease

21-6.

Early detection of oral and pharyngeal cancers

21-8.

Dental sealants

21-10.

Use of oral health care system 

21-15.

Referral for cleft lip or palate

21-16.

Oral and craniofacial State-based surveillance system




22.
Physical Activity and Fitness






22-1.

No leisure-time physical activity

22-2.

Moderate physical activity

22-3.

Vigorous physical activity

22-4.

Muscular strength and endurance

22-5.

Flexibility




23.
Public Health Infrastructure






23-4.

Data for all population groups

23-5.

Data for Leading Health Indicators, Health Status Indicators, and Priority Data Needs at Tribal, State, and local levels


23-6.

National tracking of Healthy People 2010 objectives








24.
Respiratory Diseases






24-1.

Deaths from asthma

24-2.

Hospitalizations for asthma

24-3.

Hospital emergency department visits for asthma

24-4.

Activity limitations

24-5.

School or work days lost

24-6.

Patient education

24-7.

Appropriate asthma care

24-8.

Surveillance systems

24-9.

Activity limitations due to chronic lung and breathing problems

24-10.

Deaths from COPD



27.
Tobacco Use 






27-1.

Adult tobacco use

27-5.

Smoking cessation by adults

27-6.

Smoking cessation during pregnancy




28.
Vision and Hearing






28-4.

Impairment in children and adolescents

28-10.

Vision rehabilitation services and devices

28-12.

Otitis media

28-13.

Rehabilitation for hearing impairment

Chapter 6 Terminology
(A listing of abbreviations and acronyms used in this publication appears in the Appendix)

Activity limitations: Problems in a persons performance of everyday functions such as communication, self-care, mobility, learning, and behavior.

Assistive devices and technology: Under the Assistive Technology Act of 1998 (Public Law 105-394), any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities.

Congregate care facilities: An out-of-home facility that provides housing for people with disabilities in which rotating staff members provide care16 or more beds when referring to adults and any number of beds when referring to children and youth under age 21 years. Congregate care excludes foster care, adoptive homes, residential schools, correctional facilities, and nursing facilities.30 

Disability: The general term used to represent the interactions between individuals with a health condition and barriers in their environment.

Environmental factors: The policies, systems, social contexts, and physical barriers or facilitators that affect a persons participation in activities, including work, school, leisure, and community events.

Health promotion: Efforts to create healthy lifestyles and a healthy environment to prevent medical and other secondary conditions, such as teaching people how to address their health care needs and increasing opportunities to participate in usual life activities.

ICIDH-2: International Classification of Functioning and Disability, the World Health Organizations conceptual and coding framework for describing a persons functioning and disability associated with his or her health condition.

People with disabilities: People identified as having an activity limitation or who use assistance or who perceive themselves as having a disability.

Permanency planning: A planning process undertaken by public and private agencies on behalf of a child with developmental disabilities and their families with the explicit goal of securing a permanent living arrangement that enhances the childs growth and development.41

Secondary conditions: Medical, social, emotional, mental, family, or community problems that a person with a primary disabling condition likely experiences.

References

[1] World Health Organization (WHO). International Classification of Functioning and Disability (ICIDH-2): Beta-1 Draft for Field Trials. Geneva, Switzerland: WHO, 1997, 11-21, 206-215, 221-225.
[2] McNeil, J.M. Americans with disabilities 199495. Current Populations Report P7061:3-6, August 1997.
[3] National Institute on Disability and Rehabilitation Research. Trends in Disability Prevalence and Their Causes: Proceedings of the Fourth National Disability Statistics and Policy Forum, May 16, 1997, Washington, DC. San Francisco, CA: The Disability Statistics Rehabilitation Research and Training Center, 1998.
[4] Institute of Medicine. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: National Academy Press, 1997, 2.
[5] U.S. Department of Health and Human Services (HHS). Healthy People 2000: National Health Promotion and Disease Prevention Objectives. Pub. No. (PHS) 91-50213. Washington, DC: HHS, Public Health Service (PHS), Office of Disease Prevention and Health Promotion (ODPHP), 1991, 39-42.
[6] Centers for Disease Control and Prevention (CDC). Health-related quality of life and activity limitationEight states, 1995. Morbidity and Mortality Weekly Report (47):134-140, 1998.
[7] Manton, K.; Corder, L.; and Stallard, E. Chronic Disability Trends in Elderly in United States Populations 19821994. Washington, DC: National Academy of Sciences, 1997, 2593-2598.
[8] Zola, I. Disability statistics, what we count and what it tells us, a personal and political analysis. Journal of Disability Policy Studies 4(2):10-39, 1993.
[9] Hahn, H. The political implications of disability definitions and data. Journal of Disability Policy Studies 4(2):42-52, 1993.
[10] HHS. Healthy People 2000 Progress Review, People With Disabilities. Washington, DC: HHS, PHS, ODPHP, 1997, 1-3.
[11] Seekins, T.; White, G.; Ravesloot, C.; et al. Developing and evaluating community-based health promotion programs for people with disabilities. In: Secondary Conditions Among People With Disabilities: Current Research and Trends. Pacific Grove, CA: Brookes-Cole Publisher, in press.
[12] Lorig, K. A workplace health education program that reduces outpatient visits. Medical Care 9:1044-1054, 1995.
[13] Research and Training Center on Rural Rehabilitation. Cost Containment Through Disability Prevention: Preliminary Results of a Health Promotion Workshop for People With Physical Disabilities. Missoula, MT: University of Montana, the Center, 1996.
[14] Lorig, K.; Lubeck, D.; Kraines, R.; et al. Outcomes of self-help education for patients with arthritis. Arthritis Rheumatism 28(6):680-685, 1985.
[15] National Osteoporosis Foundation. Physician Guide to Prevention and Treatment of Osteoporosis. Washington, DC: the Foundation, 1998.
[16] Melnikova, N; Hough, J.; and Lollar, D. Osteoporosis among women with physical disabilities: Risk factors and protective factors. Paper presented at 126th Annual Meeting of the American Public Health Association, Disability Forum Special Interest Group in Washington, DC, November 17, 1998.
[17] HHS. Healthy People in Healthy Communities: A Guide for Community Leaders. Washington, DC: HHS, PHS, Office of Public Health and Science (OPHS), ODPHP, 1998.
[18] HHS. U.S. Preventive Services Task Force: Guide to Clinical Preventive Services. 2nd ed. Washington, DC: HHS, OPHS, ODPHP, 1995, Chapter V.
[19] HHS. Task Force on Community Preventive Services: Guide to Community Preventive Services. Washington, DC: HHS, in press.
[20] U.S. Public Health Service. Putting Prevention Into Practice: Clinicians Handbook of Preventive Services. 2nd ed. McLean, VA: International Medical Publishing, Inc., 1998, Chapter 36.
[21] National Council on Disability. Reorienting Disability Research: Letter to the United States President. Washington, DC: the Council, 1998, 1-17.
[22] Office on Disability and Health. 1999 Behavioral Risk Factor Surveillance System Disability Module. Atlanta, GA: CDC, 1999.
[23] Tuttle, D. Self Esteem and Adjusting With Blindness: The Process of Responding to Life Demands. Springfield, IL: Charles C. Thomas Publisher, 1984, 61, 145-158.
[24] Sowers, J., and Powers, L. Enhancing the participation and independence of students with severe and multiple disabilities in performing community activities. Mental Retardation 33(4):209-220, 1995.
[25] Kaye, S. Is the status of people with disabilities improving? Disability Status Abstract (21):3-4, May 1998.
[26] Novack, T., and Gage, R. Assessment of family functioning and social support. In: Cushman, L., and Scherer, M., eds. Psychological Assessment in Medical Rehabilitation. Washington, DC: American Psychological Association, 1995, 286-297.
[27] Patrick, D. Rethinking prevention for people with disabilities part 1: A conceptual model for promoting health. American Journal of Health Promotion 11(4):25-260, 1997.
[28] Swain, P. Helping disabled people: The users view. British Medical Journal 306(6883):990-992, 1993.
[29] Braddock, D.; Hemp, R.; Parish, S.; et al. The State of the States in Developmental Disabilities. 5th ed. Washington, DC: American Association on Mental Retardation, 1998, 9-10.
[30] Prouty, R., and Lakin, K. Residential Services for People With Developmental Disabilities: Status and Trends Through 1997. Minneapolis, MN: University of Minnesota, Research Training Center on Community Living, Institute on Community Integration, 1998, xii, 47, 53, 58, 60, 65-67, 76, 88, 101.
[31] Kane, R. Expanding the home care concept: Blurring distinctions among home care, institutional care and other long-term care facilities. Milbank Quarterly 73(2):161-186, 1995.
[32] Hardwick, S.; Pack, J.; Donohoe, E.; et al. Across the States 1994: Profiles of Long-Term Care Systems. Washington, DC: American Association of Retired People, Center on Elderly People Living Alone, Public Policy Institute, 1994, 5-7.
[33] Presidential Task Force on Employment of Adults with Disabilities. Recharting the Course: First Report. Washington, DC: the Task Force, 1998.
[34] Stoddard, S.; Jans, L.; Ripple, J.; et al. Chartbook on Work and Disabilities in the United States, 1998. Washington, DC: U.S. Department of Education (DoE), National Institute on Disability and Rehabilitation, 1998.
[35] DoE. To Assure the Free Appropriate Public Education of All Children with Disabilities: Nineteenth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, Section 618. Washington, DC: DoE, 1997.
[36] Laplante, M.; Hendershot, G.; and Moss, A. Assistive technology devices and home accessibility features: Prevalence, payment, need, and trends. In: Advance Data from Vital and Health Statistics: No. 217. Hyattsville, MD: National Center for Health Statistics, 1992.
[37] National Council on Disability. Study on Financing of Assistive Technology Devices and Services for Individuals With Disabilities. Washington, DC: the Council, 1993.
[38] National Council on Disability. Equality of Opportunity: The Making of the Americans with Disabilities Act. Washington, DC: the Council, 1997, 9-21.
[39] Craig Hospital and the Colorado Department of Public Health and Environment. Craig Hospital Inventory of Environmental Factors. Short form (CHIEF SF). Colorado 1999 Behavioral Risk Surveillance System Disability Study. Englewood, CO: Craig Hospital, Denver, CO, and Colorado Department of Public Health and Environment, Survey Research Unit.
[40] National Alliance for Caregiving and the American Association of Retired People. Family Caregiving in the U.S.: Findings From a National Survey. Bethesda, MD: American Association of Retired People, Washington, DC, 1997, 8.
[41] Singer, G., and Irvin, L. Support for Caregiving Families: Enabling Positive Adaptation to Disability. Baltimore, MD: Paul H. Brooks Publishing Company, 1989, 44.
[42] Pugliese, J.M.; Ingram, T.O.; and Edwards, G. Stability of Employment Status of Caregivers Who Have a Child With a Disability. Birmingham, AL: United Cerebral Palsy of Greater Birmingham, Inc., 1998.

APPENDIX II. 	GLOSSARY OF ABBREVIATIONS and ACRONYMS

AAHD ? American Association of Health and Disability  
AAMC ? Association of American Medical Colleges
AAMR ? American Association on Mental Retardation 
AAP ? American Academy of Pediatrics 
AAPD ? American Association of People with Disabilities
AAPOR ? American Association on Public Opinion Research 
AARP ? American Association of Retired People 
AASA ? American Association of School Administrators 
AAUAP ? American Association for University Affiliated Programs for People with Developmental Disabilities 
ACA ? Amputee Coalition of America
Access Board ? The US Architectural and Transportation Barriers Compliance Board 
ACS ? American Cancer Society
ACTE ? Association for Career and Technical Education 
ADA   Americans with Disabilities Act
ADA ? American Dental Association
ADAAG ? Americans with Disabilities Act Accessibility Guidelines
ADAPT?American Disabled for Attendant Programs Today 
ADD ? Administration on Developmental Disabilities 
ADLs ? Activities of Daily Living
AED ? Academy for Educational Development 
AFT ? American Federation of Teachers 
AHA ? American Heart Association
AHRQ ? Agency for Healthcare Research and Quality (formerly, the AHCPR, Agency for Health Care Policy and Research)
AIA ? American Institute of Architects
ALA ? American Lung Association
AMA ? American Marketing Association 
AMA ? American Medical Association
AMI ? Alliance for the Mentally Ill 
AOTA ? American Occupational Therapy Association 
APA ? American Planning Association
APA ? American Psychological Association 
APHA ? American Public Health Association
APRIL ? Association of Programs in Rural Independent Living 
APTA ( American Physical Therapy Association 
Arc ( See: The Arc
ASA ( American Society on Aging 
ASCD ( Association for Supervision and Curriculum Development 
ASHA ( American Speech-Language-Hearing Association 
ASPE ( Assistant Secretary for Planning and Evaluation (Office of)
ASPH ( Association of Schools of Public Health
ASTDD ( Association of State and Territorial Dental Directors
ASTHO ( Association of State and Territorial Health Officers 
AT ( Assistive technology
ATAP ( Assistive Technology Act Project
ATPM ( Association of Teachers of Preventive Medicine 
AUCD ( Association of University Centers on Disabilities 
BIA ( Bureau of Indian Affairs
BLS ( Bureau of Labor Statistics
BRFSS ( Behavioral Risk Factor Surveillance System
CAHPS ( Consumer Assessment of Health Plans Study
CAPS ( Children of Aging Parents 
CARF ( The Rehabilitation Accreditation Commission
CASE ? Council of Administrators of Special Education 
CCD ? Consortium for Citizens with Disabilities  
CCSSO ? Council of Chief State School Officers
CDC ? Centers for Disease Control and Prevention
CDPR ? Center for Disability Policy and Research
CEBS ? Certified Employee Benefits Specialist program
CEC ? Council for Exceptional Children 
CESD ? Center for Epidemiologic Studies - Depression
CFOI ? Census of Fatal Occupational Injuries
CGCS ? Council of Great City Schools 
CHEA ? Council on Higher Education Accreditation
CHIEF ? Craig Hospital Inventory of Environmental Factors 
CHIP ? Childrens Health Insurance Program
CILs ? Centers for Independent Living 
CMS ? Centers for Medicare and Medicaid Services 
CPG ? cardiovascular treadmill test 
CPS ? Current Population Survey, US Bureau of the Census
CSAVR ? Council of State Administrators of Vocational Rehabilitation
cshcn ? children with special health care needs, as they are referred to generically
CSHCN ? Children with Special Health Care Needs, bona fide program of MCHB 
CSTE ? Council of State and Territorial Epidemiologists 
CVD ? cardiovascular disease
DALYs  Disability Adjusted Life-Years
DANS ? Data Analysis System
DBTACs ? Disability and Business Technical Assistance Centers
DD ? Developmental Disabilities
DDC ? Developmental Disabilities Councils 
DHB  Disability and Health Branch 
DHDD ? Division of Human Development and Disability
DHHS ? Department of Health and Human Services
DME ? durable medical equipment
DNA  Data Not Analyzed 
DNC  Data Not Collected
DOE ? Department of Education
DOI ? Department of Interior
DOJ ? Department of Justice 
DOL ? Department of Labor 
DOT ? Department of Transportation
DPI ? Disabled People International (Canada)
DREDF ? Disability Rights Education and Defense Fund
DSU  Data Statistically Unreliable
DUI trust funds ? Driving under the influence; chemical testing trust funds
EAP ? Employee Assistance Programs 
EEOC ? Equal Employment Opportunity Commission 
EOC ? Equal Opportunities Commission
EPSDT ? Early Periodic Screening, Diagnosis and Treatment 
FAPE ? free appropriate public education
FCA ? Family Caregiver Alliance 
FDA ? Food and Drug Administration
FEMA ? Federal Emergency Management Agency 
FES ? Functional electrical stimulation
FHA ? Fair Housing Amendments Act 
FIM ? Functional Measure of Independence 
FMAP ? Federal Medical Assistance Percentage Handicaps
GAO ? Government Accounting Office 
GIS ? Geographic Information System
HCBS ? Medicaid Home and Community Based Services 
HCFA ? Health Care Financing Administration 
HEDIS ? Health Plan Employer Data and Information Set
HMO  health maintenance organization
HP 2010  Healthy People 2010 
HUD ? Department of Housing and Urban Development 
IADLs ? Instrumental Activities of Daily Living 
IAFP ? International Association of Fitness Professionals
ICC ? Interagency Coordinating Councils (there are federal, state and county ICCs
ICD10 ? International Classification of Diseases 
ICF  International Classification of Functioning, Disability, and Health/may also be referred to as ICFDH or ICIDH-2 (International Classification of Impairments, Disabilities, and Health
ICF-MR ? Intermediate Care Facilities for the Mentally Retarded 
IDEA ? Individuals with Disabilities Education Act
IEP ? Individualized Education Program
IHS ?Indian Health Services
ILIAD ? The IDEA Local Implementation by Local Administrators (ILIAD) Partnership
IRS ? Internal Revenue Service
JCAHO ? Joint Commission on Accreditation of Healthcare Organizations
La Raza ? Hispanic Health Group
LEA ? local education agency
LEND ? Leadership Education in Neurodevelopmental and Related Disabilities 
LRE ? In IDEA, LED refers to the requirement of providing for students with disabilities an education in the "least restrictive environment."  The language used is a "LRE provision" or "LRE requirement." 
LS  life satisfaction  
LTC ? Long-term care 
LTD ? long-term disability 
MCHB ? Maternal and Child Health Bureau
MCO  managed care organization
MEPS ? Medical Expenditure Panel Survey
MiCASSA ? Medicaid Community Attendant and Support Services Act 
MMWR ? Morbidity and Mortality Weekly Report 
MR ? mental retardation
MSA ? Metropolitan statistical area levels
n4a ? National Association of Area Agencies on Aging 
NAACP ? National Association for the Advancement of Colored People
NBA ? National Association of Broadcasters
NABE ? National Association for Bilingual Education
NABSE ? National Alliance of Black School Educators 
NACCHO ? National Association of City and County Health Officials
NADDC ? National Association of Developmental Disabilities Councils
NAEPP ? National Asthma Education and Prevention Program
NAESP ? National Association of Elementary School Principals 
NAIC ? National Association of Insurance Commissioners
NAMCS ? National Ambulatory Medical Care Survey
NAMI ? National Association of Mental Impairments
NAPVI ? National Association for Parents of the Visually Impaired
NASA  National Aeronautics and Space Agency  
NASDSE ? National Association of State Directors of Special Education
NASHP ? National Academy for State Health Policy 
NASN ? National Association of School Nurses 
NASP ? National Association of School Psychologists 
NASSP ? National Association of Secondary School Principals 
NASTHO  ? National Association of State and Territorial Health Officials
NASW ? National Association of Social Workers 
NCAI ? National Congress of American Indians
NCBDDD ? National Center on Birth Defects and Developmental Disabilities
NCC ? National Council of Churches 
NCCDPHP ? National Center for Chronic Disease Prevention and Health Promotion 
NCD ? National Council on Disability  
NCDDR ? National Center for the Dissemination of Disability Research
NCES ? National Center for Education Statistics
NCHRBS ? National College Health Risk Behavior Survey
NCHS ? National Center for Health Statistics 
NCIL ? National Council on Independent Living 
NCMRR ? National Center for Medical Rehabilitation Research 
NCPAD ? National Center on Physical Activity and Disability
NCQA ? National Council on Quality Assurance 
NCS ? National Comorbidity Survey
NCSL ? National Conference of State Legislators
NEA ? National Education Association 
NEGP ? National Education Goals Panel
NFB ? National Federation of the Blind 
NGA ? National Governors Association
NGO  Non-governmental organization
NHAMCS ? National Hospital Ambulatory Medical Care Survey
NHANES ? National Health and Nutrition Examination Survey 
NHDS ? National Hospital Discharge Survey
NHIS ? National Health Interview Survey
NIA ? National Institute on Aging
NICHD ? National Institute of Child Health and Human Development
NIDDK ? The National Institute of Diabetes and Digestive and Kidney Diseases
NIDRR ? National Institute of Disability and Rehabilitation Research 
NIEA ( National Indian Education Association 
NIH ( National Institutes of Health
NIHB ( National Indian Health Board
NILC ( National Independent Living Council 
NIMH ( National Institute of Mental Health 
NINDS ( National Institute of Neurological Disorders and Strokes 
NIS ( National Immunization Survey
NLTS-2 ( National Longitudinal Transition Study
NNHS ( National Nursing Home Survey
NOD ( National Organization on Disability
NOW ( National Organization of Women
NRHCHDR ( National Rehabilitation Hospital Center for Health and Disability Research
NSBA ( National School Board Association 
NSF ( National Science Foundation 
NSFG ( National Survey of Family Growth
NTRS ( National Therapeutic Recreation Society
NVSS ( National Vital Statistics Survey
NYLN ( National Youth Leadership Network 
ODPHP  Office of the Disease Prevention and Health Promotion 
OHSNA ( Oral Health Survey of Native Americans
OMB ? Office on Management and Budget 
OSEP ? Office of Special Education Programs
OSERS ? Office of Special Education and Rehabilitative Services
P&A ? Protection and Advocacy 
PACER ? Parent Advocacy Coalition for Educational Rights
PAS ? Personal Assistance Services
PCA ?Personal care attendant 
PedNSS ? Pediatric Nutrition Surveillance Survey
PHF ? Public Heath Foundation
PPO ? preferred provider organization
PregNSS ? Pregnancy Nutrition Surveillance Survey
PSUMERI ? Physician Survey Under the Medication Error Reduction Initiative
PTA ? Parent-teachers associations 
PTIs ? Parent Training and Information Centers
PTO ? Parent-teachers organizations
PWMI ? People with Mobility Impairments
QEM ? Quality Education for Minorities Network 
QOL  quality of life
RCS ? Respite Care Services
RESNA ? Rehabilitation Engineering and Assistive Technology Society of North America
RFP ? request for proposal
RI ? Rehabilitation International 
RN ? registered nurse
RSA ? Rehabilitation Services Administration
RWJF ? Robert Wood Johnson Foundation
SAMSHA ? Substance Abuse and Mental Health Services Administration
SBA ? Small Business Administration 
SCI ? spinal cord injury
SDS ? Society for Disability Studies 
SED ? In IDEA, SED refers to a "serious emotional disturbance."  IDEA also uses the term "emotional disturbance" (or ED) to refer to the same population.
SEELS ? Special Education Elementary Longitudinal Study 
SEER ? Surveillance Epidemiology and End Results
SET ? Special Education Technology 
SGA ? substantial gainful allowance (for employment)
SHPPS ? School Health Policies and Programs Study
SILC ? State Independent Living Council 
SIPP  Survey of Income and Program Participation
SOPHE ? Society of Public Health Educators
SPDIU ? Survey of Prescription Drug Issues and Usage
SSA ? Social Security Administration
SSDI ? Social security disability income
SSI ? Social security insurance
TBI ? traumatic brain injury
The Arc ? (formerly) The Association for Retarded Citizens
Title V ? Children with Special Needs Act 
TWWIIA ? Ticket To Work
UAP ? University Affiliated Programs 
UCPA ? United Cerebral Palsy Association 
URAC ? American Accreditation HealthCare Commission
USRDS ? United States Renal Data System
VA ? Veterans Administration
VR ? Vocational rehabilitation 
WBGH ? Washington Business Group on Health
WHO ? World Health Organization 
WHOQoL ? World Health Organization Quality of Life Instruments
YHL  Years of Health Lost 
YMCA  Young Mens Christian Association
YRBS  Youth Risk Behavior Survey

APPENDIX III.	THE  LEADING HEALTH INDICATORS

Healthy People 2010 Objective (Short Text)
Healthy People 2010 Objective Number 

 Physical Activity

   Moderate physical activity in adults
22-2
   Vigorous physical activity in adolescents
22-7

 Overweight and Obesity

   Obesity in adults
19-2
   Overweight and obesity in children and adolescents

19-3c
 Tobacco Use

   Cigarette smoking by adults
27-1a
   Cigarette smoking by adolescents
27-2b

 Substance Abuse

   Alcohol and illicit drug use by adolescents
26-10a
   Illicit drug use by adults
26-10c
   Binge drinking by adults
26-11c

 Responsible Sexual Behavior

   Responsible adolescent sexual behavior
25-11
   Condom use by adults
13-6

 Mental Health

   Treatment for adults with recognized depression
18-9b

 Injury and Violence

   Deaths from motor vehicle crashes
15-15a
   Homicides
15-32

 Environmental Quality

   Ozone pollution exposure
8-1a
   Exposure to environmental tobacco smoke
27-10

 Immunization

   Fully immunized children aged 19 to 35 months
14-24
   Flu and pneumococcal vaccination in high-risk adults

14-29a,b
 Access to Care

   People with health insurance
1-1
   Source of ongoing care
1-4a
   Early prenatal care
16-6a
APPENDIX IV.

APPENDIX IV.	HealthierUS: The Presidents Health and Fitness Initiative
     (State Data on People with Disabilities) 


The CDC is expected to publish data pertaining to this presidential initiative in the November 2003, Morbidity and Mortality Weekly Report

HealthierUS emphasizes a select number of HP2010 Leading Health Indicators. The HealthierUS web site is http://www.healthierus.gov


FONT KEY for Table 1

Bold/Underline identifies data that indicate that people w/disabilities are doing equal or better than people wo/disabilities
      
Italics denote objective targeting a population w/a specific chronic disabling condition


This shade

identifies HP2000 objectives not replicated in HP2010

APPENDIX V.  TABLE 1,  HEALTHY PEOPLE 2000 DISPARITIES 

Table 1.  Identifies all Healthy People 2000 objectives and data that address the health of people with disabilities and disparities [19 unduplicated (sub) objectives out of 319 possible objectives]. Highlighted objectives were continued in the HP2010 plan.
Reference:  U.S. Department of Health and Human Services.  Healthy People 2000 Review, 1998-99.  Washington, DC: U.S. Government Printing Office, June 1999.

No.

Objective

2000
Target

Ref. Year

Disability Status

Data Source

Data Agency





With

Without


1-2e
People w/disabilities 20+ years who are overweight

25%

1994 

38%

35%

NHIS

CDC
1-5b
People w/disabilities who report no leisure-time physical activity

20%

1995

29% 

23%

NHIS

CDC
6-5a
People w/disabilities who report adverse health effects from stress

40%

1995

49%

34%

NHIS

CDC
6-8
People w/disabilities who seek help in coping w/personal emotional problems

30%

1995

27%

19%

NHIS

CDC
21-2a
People w/disabilities who had a tetanus booster in last ten yrs.

none

1995

57%

56%

NHIS

CDC
21-2b
Women w/disabilities ages >65 who had a Pap test in past 3 yrs.
none
1995
50%
59%
NHIS
CDC
21-2c
Women w/disabilities ages >50 who had a breast/mammography screen in past 2 yrs.

none

1995

 56%

69%

NHIS

CDC
6-6
People w/mental disorders who use community support programs

30%

1994

34.6%

NHIS

CDC
6-7
People w/major depressive disorder who obtain treatment

54%

1992

34.2%

NCS
U. of 
MI
8-3
Children w/disabilities who are enrolled in preschool
none
1991
1995
56%
63%
NEGP
SHPPS
NCES, CDC
9-11
Adults w/traumatic spinal cord injury and their incidence of secondary conditions
 20%
better


No data in review
No data source


17-2
People w/diabetes or asthma who experience activity limitations




Reported by income and race

NHIS

CDC
17-4
People w/asthma who experience activity limitations
10%
1996
19.6%
NHIS
CDC
17-5
People w/chronic back conditions who experience activity limitations
19%
1996
27.9%
NHIS
CDC
17-10
People w/diabetes who experience secondary conditions: blindness, perinatal mortality and morbidity, end stage renal disease, amputation




Reported by condition
Multiple sources


17-14
People w/chronic or disabling conditions who receive patient education




Reported by condition and race

NHIS

CDC

17-23

People w/diabetes who received a dilated eye exam in past year

70%

1991

52%

NHANES

CDC

20-11a

Institutionalized chronically ill or elderly who receive pneumococcus vaccine

80%

1995

22%

NHIS

CDC

20-11b

Institutionalized chronically ill or elderly who receive Influenza vaccine

80%

1995

61%

NHIS

CDC


APPENDIX VI.  TABLE 2, HEALTHY PEOPLE 2010 DISPARITIES 

FONT KEY for Table 2

Bold/Underline identifies data that indicate that people w/disabilities are doing equal or better than people wo/disabilities

italics denote objective targeting a population w/a specific condition

*asterisks denote objectives specified as Leading Health Indicators


This shade

denotes objectives targeting public, government entities or systems, not people

Table 2.  Identifies all Healthy People 2010 objectives and data that address the health of people with disabilities and disparities. [There are 207 unduplicated (sub) objectives out of 467 possible objectives.]  Reference: U.S. Department of Health and Human Services.  Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health.  2 Vols.  Washington, DC: U.S. Government Printing Office, November 2000.

No.


Objectives with data comparing people with and without disabilities

2010
Target

Baseline Data

Data Source 

Data 
Agency




Ref.
Year

Disability Status







With 

Without



1-1*

People w/disabilities under age 65 who have health insurance

100%

1997

 85%

86%

NHIS

CDC

1-4a*

People w/disabilities of all ages who have a specific source of ongoing care

96%

1998

90%

87%

NHIS

CDC

1-4b

People w/disabilities ages 0-17 who have a specific source of ongoing care

96%

1998

95%

93%

NHIS

CDC

1-4c

People w/disabilities ages 18+ who have a specific source of ongoing care

96%

1998

88%

85%

NHIS

CDC

3-9b

Adults w/disabilities ages 18+ who use protective measures against skin cancer

75%

1998

48%

46%

NHIS

CDC

3-11a

Women w/disabilities ages 18+ who have ever received a Pap test

97%

1998

96%

93%

NHIS

CDC

3-11b

Women w/disabilities ages 18+ who have received a Pap test in preceding 3 yrs.

90%

1998

79%

81%

NHIS

CDC

3-12a

Adults w/disabilities age 50+ who have received a fecal occult blood test in preceding 2 yrs.

50%

1998

39%

35%

NHIS

CDC

3-12b

Adults w/disabilities age 50+ who have ever received a sigmoidoscopy

50%

1998

42%

36%

NHIS

CDC



No.


Objectives with data comparing people with and without disabilities 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With 

Without



3-13

Women w/disabilities age 40+ who have received a mammogram in preceding 2 yrs.

70%

1998

54%

68%

NHIS

CDC

5-2

People w/disabilities who are newly diagnosed with diabetes

2.5 per
1,000

1994-96

6.4 per 1,000

2.5 per
1,000

NHIS

CDC

5-3

People w/disabilities who are new and previously diagnosed with diabetes

25 per
1,000 

1997

87 per
1,000

28 per
1,000

NHIS

CDC

5-4

Adults w/disabilities age >20 whose diabetes is diagnosed

80%

1991-94

66%

69%

NHIS

CDC

6-3

Adults w/disabilities who report sad feelings that interfere with activities

7%

1997

28%

7%

NHIS

CDC

6-4

Adults w/disabilities who participate in social activities

100%

1997

95%

100%

NHIS

CDC

6-5

Adults w/disabilities who report  sufficient emotional support

79%

1998

70%

79%

BRFSS

CDC

6-6

Adults w/disabilities who report satisfaction w/life

96%

1998

 87%

96%

BRFSS

CDC

6-8

Adults w/disabilities ages 21-64 who are employed

82%

1994-95

52%

82%

SIPP

Bureau of Census

6-9

Children w/disabilities who are included in regular education programs

60%

1995-96

45%

100%

DANS

OSERS

7-1

Youth w/disabilities who completed high school

85%

1995

79%

86%

CPS

Bureau of Census

7-6

Employed people w/disabilities age 18+ who participated in employee-sponsored health promotion events

75%

1994

56%

62%

NHIS

CDC

7-12

People w/disabilities who participated last year in one organized health activity 

90%

1998

12%

13%

NHIS

CDC

12-9

Adults w/disabilities who have high blood pressure

16%

1991-94

32%

27%

NHANES

CDC

12-10

Adults w/disabilities who have their high blood pressure under control

50%

1991-94

20%

16%

NHANES

CDC

12-11

Adults w/disabilities with high blood pressure who are taking action to control their blood pressure

95%

1998

86%

83%

NHIS

CDC




12-12

Adults w/disabilities who have had blood pressure measured in past 2 yrs.

95%

1998

92%

90%

NHIS

CDC

12-13

Adults w/disabilities who have reduced mean total blood cholesterol

199 mg/dL

1991-94

208 mg/dL

204 mg/dL

NHANES

CDC

12-14

Adults w/disabilities who have high total blood cholesterol

17%

1991-94

24% 

19%

NHANES

CDC

12-15

Adults w/disabilities who have had blood cholesterol screening in last 5 yrs.

80%

1998

69%

66%

NHIS

CDC
14-27a


Adolescents w/ disabilities ages 13-15 w/3 or more doses of hepatitis B vaccine
90%
1997
46%
48%
NHIS
CDC  
14-27b
Adolescents w/disabilities ages 13-15 w/2 or more doses of measles, mumps, rubella vaccine

90%

1997

91%

89%

NHIS

CDC
14-27c
Adolescents w/disabilities ages 13-15 w/1 or more doses of tetanus-diptheria booster
90%
1997
94%
92%
NHIS
CDC
14-29a* 
Non-institutionalized adults with disabilities ages 65+ who are annually vaccinated against influenza
90%

1998
 63%

60%

 NHIS 
CDC
14-29b*
Non-institutionalized adults w/disabilities ages 65+ who ever received a pneumococcus vaccine
90%
1998
 53%
45%
 NHIS
CDC
14-29c
Non-institutionalized adults w/ disabilities ages 18-64 who are annually vaccinated against influenza
60%
1998
29% 

25%

NHIS
CDC

14-29d

Non-institutionalized adults ages 18-64 who ever received a pneumococcus vaccine

60%

1998

18%

10%

NHIS

CDC

19-1a

Women and men w/disabilities who are at a healthy weight

60%

1991-94

32%


41%


NHANES

CDC

19-1b

Women w/disabilities who are at a healthy weight

60%

1991-94

35%

45%

NHANES

CDC

19-1c

Men w/disabilities who are at a healthy weight

60%

1991-94

30%

36%

NHANES

CDC

19-2a*

Women and men w/disabilities who are obese

15%

1991-94

30%

23%

NHANES

CDC
19-2b
Women w/disabilities who are obese
15%
1991-94
38%
25%
NHANES
CDC

19-2c

Men w/disabilities who are obese

15%

1991-94

21%

22%

NHANES

CDC

19-10

Children and Adults w/disabilities ages 2+ who consume < 2,400 mg sodium per day

65%

1991-94

18%

16%

NHANES

CDC

19-11

Children and Adults w/disabilities ages 2+ who meet recommended daily Calcium

75%

1991-94

44%

44%

NHANES

CDC

19-12c

Women w/disabilities ages 12-49 who have iron deficiency

7%

1991-94

4%

12%

NHANES

CDC

21-4

Adults w/disabilities ages 65-74 who have all teeth extracted 

20%

1997

34%

22%

NHIS

CDC
21-10
Children and adults who annually use the oral health care system

56%

1996

40%

45%

MEPS

AHRQ

22-1

Adults w/disability ages 18+ who engage in no leisure-time physical activity

20%

1997

56%

36%

NHIS

CDC

22-2a*

Adults w/disabilities ages 18+ who are physically activity 30 minutes 5 days/wk

30%

1997

12%


16%


NHIS

CDC

22-2b*

Adults w/disabilities age 18+ who are physically activity 20 minutes 3 days/wk

 30%

1997

23%

33%

NHIS

CDC

22-3

Adults w/disabilities age 18+ who engage in vigorous physical activity 20+ minutes 3 days/wk

 30%

1997

13%

25%

NHIS

CDC

22-4

Adults w/disabilities age 18+ who engage in strengthening exercises

 30%

1998

11%

18%

NHIS

CDC

22-5

Adults w/disabilities age 18+ who engage in activities that enhance or maintain flexibility

 40%

1995

29%

31%

NHIS

CDC
27-1a*
Adult w/disabilities who smoke cigarettes
 12%
1998
32%
23%
NHIS
CDC

  27-1b

Adults w/disabilities who use spit tobacco 

0.4%

   1998

  3.2%

  2.5%

  NHIS

  CDC

  27-1c

Adults w/disabilities who use cigars 

  12.%

1998

  3.7%

  2.3%

  NHIS

  CDC
 27-5
Adults w/disabilities who stopped smoking 1 day or longer in attempt to quit
 75%
1998
43%
39%
NHIS
CDC
28-4

N=58
Children and teens w/disabilities age <17 who also have blindness or visual impairments
 20 per 1,000
1997
92%
19%
NHIS
CDC




No.


Objectives with data on the heath status of people with disabilities or chronic disabling conditions

2010
Target

Baseline Data

Data 
Source

Data
Agency




Ref. Year

Disability Status







With 


1-16
Adults w/disabilities in nursing homes who are diagnosed with pressure sores
8 per 1,000
1997
16 per 1,000	
NNHS
CDC
2-2
Adults w/chronic joint symptoms ages 18+ who have a limitation in activity

21%

1997

27%

NHIS

CDC
2-3
Adults w/chronic joint symptoms who have difficulty w/personal care

1.4%

1997

 2%

NHIS

CDC
2-5
Working-aged adults w/arthritis who are employed

78%

1997

 67%

NHIS

CDC
2-10
Adults w/osteoporosis ages 65+ who are hospitalized for vertebral fracture

14 per
10,000

1998

17.5 per 10,000 adults ages  65+

NHDS

CDC
2-11
Adults w/chronic back conditions ages 18+ who have an activity limitation

25 per
1,000

1997

32 per 1,000

NHIS

CDC
4-2
People w/chronic kidney failure who die from cardiovascular disease

52 per
1,000

1997

70 per 1,000

U.S. RDS

NIH
4-7
People w/diabetes who experience kidney failure

78 per million

1996

113 per million

U.S. RDS

NIH

5-10

People w/diabetes who experience lower-extremity amputation

5 per
1,000

1990

11 per 1,000

NHDS or NHIS, CDC

6-7a

Adults w/disabilities who live in congregate care facilities

46,681


1997

93,362 adults

Survey of state DD Directors, U. of MN or State of the States Study, U. of IL

6-7b

Children w/disabilities who live in congregate care facilities

0

1997

24,300 children
Survey of state DD Directors, U. of MN or State of the States Study, U. of IL

18-4

People w/serious mental illness who are employed

51%

1994

43%

NHIS

CDC

18-9a

Adults w/serious mental illness ages 18-54 who are receiving treatment 

17% better

1997

47%


Multiple data sources

NIH or SAMHSA


18-9b*

Adults w/recognized depression ages 18+ who are receiving treatment

17% better

1997

23%

NHSDA

NIH or SAMHSA


18-9c

Adults w/schizophrenia ages 18+ who are receiving treatment

17% better

1984

60%

NHSDA

NIH or SAMHSA

18-9d

Adults w/anxiety disorder ages 18+ who are receiving treatment

17% better

1997

38%

Multiple data sources

NIH or SAMHSA

24-1a

Children w/asthma under age 5 whose death is due to asthma

1 per
million

1998

2.1 per million

NVSS

CDC

24-1b

Children w/asthma ages 5-14 whose death is due to asthma

1 per
million

1998

3.3 per million

NVSS

CDC

24-1c

Youth and adults w/asthma ages 15-34 whose death is due to asthma

3 per 
million

1998

5.0 per million

NVSS

CDC

24-1d

Adults w/asthma ages 35-64 whose death is due to asthma

9 per
million

1998

17.8 per million

NVSS

CDC

24-1e

Adults w/asthma ages 65+ whose death is due to asthma

60 per
million

1998

86.3 per million

NVSS

CDC

24-2a

Children w/asthma under age 5 who are hospitalized due to asthma

25 per
10,000

1998

45.6 per 10,000

NHDS

CDC

24-2b

Children and adults w/asthma ages 5-64 who are hospitalized due to asthma

8 per
10,000

1998

12.5 per 10,000

NHDS

CDC

24-2c

Adults w/asthma ages 65+ who are hospitalized due to asthma

10 per 
10,000

1998

17.7 per 10,000

NHDS

CDC

24-3a

Children and adults w/asthma under age 5 who incur ER visits

80


1995-97

150 per 10,000

NHAMCS

CDC

24-3b

Children and adults w/asthma ages 5-65 who incur ER visits

50


1995-97

71 per 10,000

NHAMCS

CDC

24-3c

Children and adults w/asthma ages 65+ who incur ER visits

15 per 10,000

1995-97

29.5 per 10,000

NHAMCS

CDC

24-4

People w/asthma whose activity is limited due to their condition 

10%

1994-96

20%

NHIS

CDC

24-6

People w/asthma who receive formal patient education

30%

1998

8.4%

NHIS

CDC

24-9

N=30

Adults w/breathing problems whose activity is limited due to their condition

1.5%

1997

2.2%

NHIS

CDC




No.


Objectives for people with disabilities:
DNA = Data not available
DNC = Data not collected
DSU = Data statistically unreliable 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With 



1-6

Families of people w/disabilities who have problems obtaining health care

7%



DNA

MEPS

AHRQ

5-1

People w/disabilities with diabetes who receive formal diabetes education

60%



DNA

NHIS

CDC

7-3

People w/disabilities in college who receive health-risk behavior information 

85%



DNC

NCHRBS

CDC

9-2

Women w/disabilities ages 15-44 who give birth within 24 mos of a previous birth

6%



DNC

NSFG

CDC

9-4

Women w/disabilities ages 15-44 who become pregnant despite use of reversible contraception

7%



DNC

NSFG

CDC

9-7

Young girls w/disabilities ages 15-17who become pregnant

43 per 1,000



DNC

Abortion Survey

Alan Guttmacher Institute

12-1

Adults w/disabilities whose deaths are due to coronary heart disease

166 per 100,000



DNC

NVSS

CDC

12-7

Adults w/disabilities whose deaths are due to stroke

48 per 100,000



DNC

NVSS

CDC

14-22a

Children w/disabilities ages 19-35 mos who receive 4 doses DtaP vaccine

90%



DNC

NIS

CDC

14-22b

Children w/disabilities ages 19-35 mos who receive 3 doses Hib vaccine

90%



DNC

NIS

CDC

14-22c

Children w/disabilities ages 19-35 mos who receive 3 doses Hep B vaccine

90%



DNC

NIS

CDC

14-22d

Children w/disabilities ages 19-35 mos who receive 1 dose MMR vaccine

90%



DNC

NIS

CDC

14-22e

Children w/disabilities ages 19-35 mos who receive 3 doses Polio vaccine

90%



DNC

NIS

CDC

14-22f

Children w/disabilities ages 19-35 mos who receive 3 1 dose Varicella vaccine

90%



DNC

NIS

CDC

14-24a*

Children w/disabilities ages 19-35 mos who receive all recommended vaccines for at least 5 yrs.




80%



DNC

NIS

CDC

14-26

Children w/disabilities under age 6 who participate in immunization registries

95%



DNC
Annual Immuniz. Program 
Reports

CDC

14-27d

Adolescents w/disabilities ages 13-15 w/1 or more doses of varicella vaccine

90%


DSU

NHIS

CDC

14-29e

Institutionalized adults age 18+ who are annually vaccinated against influenza

90%



DNA

NNHS

CDC

14-29f

Institutionalized adults age 18+ who have ever received pneumococcus vaccines

90%



DNA

NNHS

CDC
16-1a
Women w/disabilities who experience fetal deaths at 20+ weeks gestation 
4.1 per 1,000 live births



DNC

NVSS

CDC
16-1b
Women w/disabilities who experience fetal/infant deaths during the prenatal period
4.5 per 1,000 live births



DNC

NVSS

CDC
16-1c
Women w/disabilities who experience infant deaths within year 1 of life
4.5 per 1,000 live births



DNC

NVSS

CDC
16-1d
Women w/disabilities who experience neonatal deaths (first 28 days of life)
2.9 per 1,000 live births



DNC

NVSS

CDC
16-1e
Women w/disabilities who experience post neonatal deaths
1.2 per 1,000 live births



DNC

NVSS

CDC
16-3a
Teens and youth w/disabilities ages 10-14 who die prematurely
16.8 per 
100,000



DNC

NVSS

CDC
16-3b
Teens and youth w/disabilities ages 15-19 who die prematurely
39.8 per
100,000



DNC

NVSS

CDC
16-3c
Teens and youth w/disabilities ages 20-24 who die prematurely
49 per 100,000



DNC

NVSS

CDC
16-4
Women w/disabilities who experience maternal death
3.3 per 100,000 live births



DNC

NVSS

CDC
16-6a*
Women w/disabilities who received prenatal care in the first trimester
90% of live births



DNC

NVSS

CDC
16-6b
Women w/disabilities who received adequate prenatal care



90% of live births



DNC

NVSS

CDC



No.


Objectives for people with disabilities:
DNA = Data not available
DNC = Data not collected
DSU = Data statistically unreliable 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With



16-9a

Women w/disabilities who have a cesarean with their first birth

15% of live births



DNC

NVSS

CDC

16-9b

Women w/disabilities who have had 
a prior cesarean

63% of live births



DNC

NVSS

CDC

16-10a

Women w/disabilities who give birth to low birth weight infants

5%




DNC

NVSS

CDC

16-10b

Women w/disabilities who give birth to very low birth weight infants


0.9%



DNC

NVSS

CDC

16-11a

Women w/disabilities who give birth preterm

7.6%



DNC

NVSS

CDC

16-11b

Women w/disabilities who have preterm births at 32-36 weeks gestation 

6.4%




DNC

NVSS

CDC

16-11c

Women w/disabilities who have preterm births - <32 weeks gestation

1.1%



DNC

NVSS

CDC

16-13

Mothers w/disabilities whose full-term infants use the back sleep position

70%



DNC

NISP

NIH

16-16a

Women w/disabilities ages 15-44 whose pregnancy begun with adequate
folic acid intake

80%




DSU



NHANES

CDC

16-16b

Women w/disabilities ages 15-44 whose pregnancy begun with adequate median RBC folate level

220ng/ml 



DNA

NHANES

CDC

16-17a

Pregnant women w/disabilities who drink alcohol 

94%



DNC




SAMHSA


16-17b

Pregnant women w/disabilities who binge drink

100%



DNC




SAMHSA


16-17c

Pregnant women w/disabilities who use smoking/tobacco

99%



DNC

NVSS

CDC
16-17d
Pregnant women w/disabilities who use illicit drugs

100%



DNC



SAMHSA
16-19a
Mothers w/disabilities who breastfeed their babies early postpartum  

75%




DNC
Mothers Survey
Abbot Laboratories
16-19b
Mothers w/disabilities who breastfeed their babies at 6 months 

50%



DNC
Mothers Survey
Abbot Laboratories
16-19c
Mothers w/disabilities who breastfeed their babies at 1 year

25%



DNC
Mothers Survey
Abbot Laboratories



No.


Objectives for people with disabilities:
DNA = Data not available
DNC = Data not collected
DSU = Data statistically unreliable 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With



19-3a

Children and teens w/disabilities ages 6-11 who are overweight

5%



DSU

NHANES

CDC

19-3b

Children and teens w/disabilities ages 12-19 who are overweight 

5%



DSU

NHANES

CDC

19-3c*

Children and teens w/disabilities ages 6-19 who are overweight

5%



DSU

NHANES

CDC

19-4

Low-income children w/disabilities under age 5 who have growth retardation

5%



DNC

PedNSS

CDC

19-5

Children and adults w/disabilities over age 2 who eat at least 2 daily servings of fruit

75%



DNC

CSFII

USDA

19-6

Children and adults w/disabilities over age 2 who eat at least 3 daily servings of green or orange vegetables

50%



DNC

CSFII

USDA

19-7

Children and adults w/disabilities over age 2 who eat at least 6 daily servings of grain products (3 are whole grains)

50%



DNC

CSFII

USDA

19-8

Children and adults w/disabilities over age 2 who consume <10% of calories from saturated fat

75%



DNC

CSFII

USDA

19-9

Children and adults w/disabilities over age 2 who consume <30% of calories from total fat

75%



DNC

CSFII

USDA

19-12a

Children w/ disabilities ages 1-2 who have iron deficiency 

7%



DNC

NHANES

CDC

19-12b

Children w/ disabilities ages 3-4 who have iron deficiency 

7%



DNC

NHANES

CDC

19-13

Low-income women w/disabilities in 3rd trimester of pregnancy who have anemia

20%



DNC

PregNSS

CDC

19-17a

All people w/disabilities with hyperlipidemia, cardiovascular disease or diabetes who receive office visits that include education related to diet and nutrition.

75%



DNC

NAMCS

CDC

19-17b

People w/disabilities w/hyperlipidemia who receive office visits that include education related to diet and nutrition.

75%



DNC

NAMCS

CDC



No.


Objectives for people with disabilities:
DNA = Data not available
DNC = Data not collected
DSU = Data statistically unreliable 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With



19-17c

People w/disabilities w/cardiovascular disease who receive office visits that include education related to diet and nutrition. 

75%



DNC

NAMCS

CDC

19-17d

People w/disabilities w/diabetes whose office visits include education related to diet and nutrition. Diabetes

75%



DNC

NAMCS

CDC

19-18

Households of people w/disabilities who have food security and reduced hunger

94%



DNC

CPS

DOC

20-1a

People w/disabilities ages >16 whose deaths are due to work-related injuries in all industry 

3.2 per 100,00 workers



DNC

CFOI

BLS

20-1b

People w/disabilities ages >16 and deaths are due to work-related injuries in mining field

16.5 per 100,00 workers



DNC

CFOI

BLS

20-1c

People w/disabilities ages >16 whose deaths are due to work-related injuries in construction 

10.2 per 100,00 workers



DNC

CFOI

BLS

20-1d

People w/disabilities ages >16 whose deaths are due to work-related injuries in transportation  

8.3 per 100,00 workers



DNC

CFOI

BLS

20-1e

People w/disabilities ages >16whose deaths are from work-related injuries in agriculture, forestry, fishing industries

16.9 per 100,00 workers



DNC

CFOI

BLS

21-1a

Children w/disabilities ages 2-4 who have dental carries 

11%



DNC

Multiple data Sources 



21-1b

Children w/disabilities ages 6-8 who have dental carries 

42%



DNC

Multiple data Sources



21-1c

Youth w/disabilities age 15 who have dental carries

51%



DNC

Multiple data Sources



21-2a

Children w/disabilities ages 2-4 who have untreated dental decay

9%



DNC

Multiple data Sources



21-2b

Children w/disabilities ages 6-8 who have untreated dental decay

21%



DNC

Multiple data Sources





No.


Objectives for people with disabilities:
DNA = Data not available
DNC = Data not collected
DSU = Data statistically unreliable 

2010
Target

Baseline Data

Data 
Source

Data
Agency




Ref. Year

Disability Status







With



21-2c

Youth w/disabilities age 15 who have untreated dental decay

15%



DNC

Multiple data Sources



21-2d

Adults w/disabilities ages 35-44 who have untreated dental decay

15%



DNC

NHANES and OHSNA

CDC and IHS

21-3

Adults w/disabilities, who have none of their teeth extracted from dental carries

42%



DNA

NHANES and OHSNA

CDC and IHS

21-5a

Adults w/disabilities ages 35-44 who have gingivitis 

41%



DNA 

NHANES and OHSNA

CDC and IHS

21-5b

Adults w/disabilities ages 35-44 who have periodontal disease

14%



DNA 

NHANES and OHSNA

CDC and IHS

21-6

People w/disabilities w/oral whose pharyngeal cancer was detected early

50%



DNA

SEER

NIH

21-8a

Children w/disabilities age 8 who have dental sealants on their molars

50%



DNC

NHANES and OHSNA

CDC and IHS

21-8b

Youth w/disabilities age 14 who have dental sealants on their molars

 50%



DNC

NHANES 
and OHSNA

CDC and IHS

27-6

Pregnant women w/disabilities who stop smoking

30%



DSU

NHIS

CDC

28-12


N=84

Children and youth w/disabilities under age 18 who visit doctor for otitis media

294 per 1,000



DNC

NAMCS and NHAMCS 


CDC



No.


Developmental objectives = objectives that had no data source in 2000

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With



1-15

People w/long term care needs who have access to a continuum of services





Developmental 

Multiple
Sources

HCFA, CDC, AHRQ

2-1

Adults w/chronic joint symptoms who have fewer means days of severe pain





Developmental

BRFSS or NHIS

CDC

2-4

Adults w/arthritis ages 18+ with personal and emotional problems who seek help in coping





Developmental

NHIS or BRFSS

CDC

2-7

Adults w/chronic joint symptoms who have seen a health care provider





Developmental





2-8

People w/arthritis who have had evidence-based education integrated into the management of their condition





Developmental





5-9

People w/diabetes who have foot ulcers





Developmental





6-11

People w/disabilities who report not having the assistive devices or technology they need





Developmental	

NHIS

CDC

6-12

People w/disabilities who report environmental barriers





Developmental

NHIS

CDC

14-24b

Youth w/disabilities ages 13-15 who receive the recommended vaccines





Developmental

NIS

CDC
16-21
Children with sickling hemoglobinopathies age <4 who are hospitalized for life-threatening sepsis




Developmental
NHDS
CDC
16-22
Children w/special health care needs who have access to a medical home




Developmental
Title V Reporting System
HRSA

24-5

People w/asthma who have missed number of school or work days due to asthma





Developmental

NHIS

CDC

24-7a

People w/asthma who receive written asthma management plans from their provider





Developmental



24-7b

People w/asthma with prescribed inhalers who receive instruction on how to use them properly





Developmental



24-7c

People w/asthma who receive education about recognizing early signs and symptoms of asthma episodes and how to respond appropriately, including instruction on peak flow monitoring for those who use daily therapy





Developmental





No.


Developmental objectives = objectives that had no data source in 2000 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With



24-7d

People w/asthma who receive medication regimens that prevent the need for more than one canister of short-acting inhaled beta agonist per month for relief of symptoms





Developmental





24-7e

People w/asthma who receive follow-up medical care for long-term management of asthma after any hospitalization due to asthma





Developmental





27-1d

Adults w/disabilities who use other tobacco products





Developmental





28-5

People w/diabetes who experience visual impairment due to diabetic retinopathy





Developmental



CDC

28-6

People with glaucoma who experience visual impairment





Developmental



CDC

28-10a

People w/visual impairments who use rehabilitation services





Developmental



CDC

28-10b

People w/visual impairments who use adaptive devices





Developmental



CDC

28-13


N=23

People w/hearing impairment who have access to rehab services and technology





Developmental



CDC



No.


Objectives that target public, government entities NOT populations 

2010
Target

Baseline Data

Data
Source

Data
Agency




Ref. Year

Disability Status







With



6-10

Health and wellness programs and facilities that provide full access for people w/disabilities





Developmental

National Network of Independent Living Centers

6-13b

Tribes that have public health surveillance and health promotion programs for people w/disabilities and their care-givers

Total coverage



Developmental


NCBDDD, Disability and Health Program

CDC

17-3

Primary care providers, pharmacists and health care professionals who routinely review all newly prescribed and over-the counter medicines w/patients age 65+





Developmental

SPDIU or
PSUMERI

AARP

23-5*

Leading health- and health status- indicators and priority data needs for which data are available at the tribal, state and local levels





Developmental

NCHS

CDC or IHS

24-8

Establish state surveillance systems or programs to track asthma-related deaths, illness, disability, occupational and environmental factors

 25 states



Developmental

CSTE and PHF Surveys

ASPH

6-1

Healthy People surveillance instruments that contain standardized questions identifying people w/disabilities

100%

1999  

0%

NCBDD, Disability and Health Program

CDC

6-13a

States and DC that have public health surveillance and health promotion programs for people w/disabilities and their caregivers

Total coverage

1999

14 States 

NCBDDD, Disability and Health program

CDC

16-23

Territories and states that have service systems for children w/special health needs

100%

1997  

15.7% 

Title V Reporting System

HRSA

21-15

States and DC that have a system for recording and referring children w/craniofacial anomalies to rehabilitation teams

All

1997  

23 states & DC

Survey of State Dental Directors

IL State Health Dept.

21-16

State and DC that have an oral and craniofacial health surveillance system

All

1999

 0 

ASTDD



No.


 Objective 

2010
Target

Baseline Data

Data Source

Data
Agency




Ref. Year

Disability Status







With 

Without



23-4

Population-based HP2010 objectives for which national data are available for the specified populations

100%

1999

11%

NCHS

CDC

23-6


N=12

Healthy People objectives that are tracked at the national level every 3 yrs

100%

2000

82%

NCHS

CDC

* In order to monitor the health and participation of people with disabilities, and to distinguish people with disability as a select segment of the population to be targeted for health promotion, we support the promotion of disability as a demographic descriptor as opposed to a health outcome.
** Following are the two existing questions (currently used in the National Health Interview Survey [NCHS NHIS] and the National Health and Nutrition Examination Survey [NHANES], and beginning in 2001, the Behavioral Risk Factor Surveillance System [BRFSS]): 
1. Are you limited in any way in any activities because of physical, mental, or emotional problems? (Yes, No, Dont know/not sure, refused)  (LIMITED)
2. Do you have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone? (Yes, No, Dont know/not sure, refused)  (EQUIPMENT)
* Source: National Health Interview Survey (NHIS)
** A medical home is a central source of care for a child with special health care needs (cshcn), from which the child receives (at the least) primary care and care coordination.  Care coordination in this context includes direct linkage to and follow-up with specialty and therapeutic health services to address geographic accessibility; continuity of care, comprehensive care (preventive well care as well as illness care).  In addition, a medical home provides assistance with the planning and organization of other services (related to school, insurance, public benefits, and other nonmedical systems) required by the child and/or family.  Given the complexity of some children's health and social needs and the central role families play in the care of cshcn, a clinical practice must be aware of the full range of the child's health and related needs and have an effective partnership with the child's family if it is to provide an effective medical home for the child.  
* CAN.471: During the PAST 30 DAYS, how often did you feel
	so sad that nothing could cheer you up?
	    nervous?
	    restless or fidgety?
	    hopeless?
	    that everything was an effort?
	    worthless?

			ALL of the time
			MOST of the time
			SOME of the time
			A LITTLE of the time
			NONE of the time
			Refused/Not ascertained/Dont know

[Asked of person who at least some of the time have felt sad; nervous; restless or fidgety; hopeless; that everything was an effort; or worthless in the past 30 days.]

AC. 530: We just talked about a number of feelings you had during the PAST 30 DAYS.  Altogether, how MUCH did these feelings interfere with your life or activities: a lot, some, a little, or not at all?
? Other Chapter 6 objective workgroups that should be addressing these issues are Objectives 6.2 (Child Mental Health), 6.4 (Social Participation), 6.5 (Emotional Support), and 6.6 (Life Satisfaction).
** Employers, as well as childcare and education, are also important partners at the local (individual) level.  Employers could be given incentives to maintain retain employees and to keep workers productive.  The  sincecost of rehiring and training is substantial, as are costs from missed days at work.  Employers increasingly are scrutinizing the productivity of workers and they have every reason to be interested in retaining good employees and offering services or programs that will ultimately enhance independence and productivity.  As one example, Ppeople with disabilities may need more health-related time off.  If this could be understood and negotiated by the employer at the time of hiring, individuals would not be dismissed as often, thereby saving money that the employer might have spent in rehiring and training.  
* Definitions from the Assistive Technology Act of 1998, PL 105-394: (1) The term assistive technology device means any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. (2) The term assistive technology service means any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device.  Such a term includes: (A) the evaluation of the needs of an individual with a disability, including a functional evaluation of the individual in the individual's customary environment; (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by individuals with disabilities; (C) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices; (D) coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; (E) training or technical assistance for an individual with disabilities, or, where appropriate, the family of an individual with disabilities; and (F) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of individuals with disabilities.
* Figures from the 1997 Survey on Income and Program Participation (SIPP) conducted by the US Bureau of the Census indicated that 19.7% of the population reported having some level of disability or activity limitation.  In addition, 3.8% reported needing personal assistance with one or more ADLs or IADLs. 
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