# Administration on Developmental Disabilities

# Fiscal Year 2000 Annual Report

United States Department of Health and Human Services 

Administration for Children and Families

Administration on Developmental Disabilities

Washington, D.C.  20201

# Fiscal Year 2000 Annual Report

# Administration on Developmental Disabilities

## Table of Contents

Page

Executive Summary3-6

Chapter IDevelopmental Disabilities Counciland Protection and Advocacy Systems7-21

Chapter IIUniversity Affiliated Programs 22-28

Chapter IIIProjects of National Significance29-34

Chapter IVConclusion35

Chapter VProgram Results36

Appendix        Fiscal Year 2000 Annual Report on Activities of the Protection

                        and Advocacy for Mentally Ill Individuals Act, as amended

# EXECUTIVE SUMMARY

There are nearly four million individuals with developmental disabilities in the United States.  These individuals compose less than two percent of the country’s total population and are among the most vulnerable members of society.  Their severe, life-long disabilities occur during their developmental years, and they require a wide range of services and supports that are often not readily available in the community.  Without appropriate services and supports, the choices open to individuals with developmental disabilities about where they live, go to school, work, and play are minimal.  

The Developmental Disabilities Assistance and Bill of Rights Act (the Act), as amended, created four grant programs – State Developmental Disabilities Councils (DDCs), Protection and Advocacy Programs (P&As), University Affiliated Programs (UAPs), now called University Centers for Excellence in Developmental Disabilities, and Projects of National Significance (PNS).  These programs are administered by the Administration on Developmental Disabilities (ADD), in the Administration for Children and Families, Department of Health and Human Services.  The programs work to assure that individuals with developmental disabilities and their families participate in designing and accessing culturally competent services, supports and other assistance and opportunities that promote independence, productivity, and integration and inclusion into the community.  Programs authorized by the Act received $122,275,000 in Fiscal Year 2000.

**Developmental Disabilities Council Program:**Through a formula award each State received funds for a Developmental Disabilities Council (DDC).  The Council is appointed by the governor to represent and advocate for individuals with developmental disabilities.  The purpose of the Council is to “engage in advocacy, capacity building, and systemic change activities that are consistent with the purpose of the Act and; contribute to a coordinated, consumer and family-centered, consumer and family-directed, comprehensive system of community services, individualized supports and other forms of assistance that enable individuals with developmental disabilities to exercise self-determination, be independent, be productive and be integrated and included in all facets of community life.” Each Council develops a State Plan identifying specific five-year goals based on the needs of individuals with developmental disabilities in their State.  Councils implement their State Plans by providing such activities as outreach, training, technical assistance, and awarding grants for model demonstration projects.

**Protection and Advocacy Program:**Through a formula award each State received funds for a Protection and Advocacy (P&A) agency.  The P&A systems provide advocacy services to individuals with developmental disabilities in areas related to their disabilities, including: education, abuse and neglect, institutional services, personal care services, guardianship and housing issues.

**University Affiliated Programs:** This is a discretionary grant program for public and private, non-profit agencies affiliated with a university.  Annual grants provide for interdisciplinary training, exemplary services, technical assistance, research, and information/dissemination activities.  The program is designed to garner additional assistance for a national network of University Affiliated Programs (UAPs). The UAPs support activities that address a variety of service issues from prevention to early intervention to supported employment, and serve a broad range of disabilities.  There are 61 UAPs that provide clinical and community-based service and technical assistance to community services personnel.

**Projects of National Significance:** Funds are awarded to public or private, non-profit institutions to enhance the independence, productivity, integration and inclusion into the community of individuals with developmental disabilities.  Monies also support the development of national and State policy.  These projects address the most pressing issues affecting individuals with developmental disabilities and their families.  Issues transcend the borders of States and territories, but must be developed in a manner that allows for local implementation of practical solutions.  Examples include: family support activities; data collection and analysis and projects that develop strategies for self-advocacy and leadership skills among individuals with developmental disabilities and their families.

# Roadmap to the Future

In collaboration with consumer and program representatives, the Administration on Developmental Disabilities developed a “Roadmap to the Future” (Roadmap) that linked the DDCs, P&As, UAPs, PNS and ADD to a shared mission and vision of independence, productivity, and integration and inclusion into the community of individuals with developmental disabilities.  The Roadmap has provided ADD programs with a framework for strategic planning and for supporting the principles of the Developmental Disabilities Assistance and Bill of Rights Act, as amended.  This approach was used to chart the direction of the programs and to address current and emerging issues and trends.  The areas addressed were employment, housing, education, health, community support, and self-determination.

Outcome measures were developed in support of goals tied to the Roadmap areas and focus on existing data to establish a baseline of information.  Councils and P&As submit this information to ADD through an Electronic Data Submission (EDS) system.  To date, the UAP and PNS information is submitted through an application and progress report rather than the EDS System.  Information provided include the State Councils on Developmental Disabilities State Plans; State Councils on Developmental Disabilities Program Performance Reports; State Protection and Advocacy Agencies Program Performance Reports; and the State Protection and Advocacy Agencies State Operational Reports.  As each State is unique, each Council and P&A determines which areas relate best with their programs.  Measures also include outcomes that are identified by ADD as those being tracked by the Department in response to the Government Performance Results Act (GPRA).

This Report to Congress provides key outcome information on the areas addressed through the EDS reporting for the Councils and P&As.  This is the second year of reporting.  Comparison with Fiscal Year 1999 data was planned, but after the initial round of reporting, ADD worked with the Councils and P&As to redraft some of the program outcomes.  Some were too broad with reporting on State progress rather than focusing on what actual activities and accomplishments the Councils and P&As were performing.  Also, a State may have chosen to work in an area during Fiscal Year 2000 and not in fiscal year 1999.  Even with these variables, the EDS system has provided valuable information about the services available to individuals with developmental and other disabilities within a state, and it provides useful information on national trends.  

This Report also includes examples of the types of activities the Councils, P&As and UAPs accomplished under the Roadmap framework.  All activities funded under the Act serve individuals with developmental disabilities and some activities also assist individuals who are considered disabled, but do not meet the definition of developmental disability under the Act.  According to Section 102(8) the term “developmental disability” means a severe, chronic disability of an individual that – is attributable to a mental or physical impairment or combination of mental or physical impairments; is manifested before the individual attains age 22; is likely to continue indefinitely; results in substantial functional limitations in 3 or more of the following areas of major life activity: Self-care; Receptive and expressive language; Learning; Mobility; Self-direction; Capacity for independent living; Economic self-sufficiency; and (v) Such disability reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.   In the case of infants and young children, an individual from birth to age 9, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the other criteria if the individual, without services and supports has a high probability of meeting those criteria later in life.

The Report uses terms that are used frequently in the disability field.  The term “transition” is used to explain that an individual with developmental disabilities is passing from one stage of life to another, e.g., a student transitioning from school to work.  Some students may stay in high school well into their 20’s and then transition to part time work with the use of a job coach to initially lend support.  Also, the term “inclusion” is used with respect to individuals with developmental disabilities to mean the acceptance and encouragement of their presence and participation by individuals without disabilities, in social, education, work and community activities. 

The Roadmap and the EDS system are two important management tools for the grantees and ADD.  In Fiscal Year 1997 a Monitoring and Technical Assistance Review System (MTARS) was also designed to institute change in ADD programs through: fostering partnerships and collaboration; involving consumers and peers; measuring outcomes; utilizing self-assessments; and emphasizing and enhancing technical assistance.  Under MTARS, ADD reviews each of the three programs (Councils, P&As and UCDDs) during a single visit to the State and evaluates program collaboration on critical statewide issues.  Federal officials and grantees tailor each site visit to address issues identified by the State’s Developmental Disabilities Network, individual programs, the Federal government, or others.  MTARS offers ADD a more expansive view of program activities in each State with regard to individuals with developmental disabilities and their families, and provided grantees the opportunity for program improvement.  A pilot program was started with Maine and Florida where family leadership was emphasized as a means of developing a common agenda for policy change.  It was recommended after these first reviews that the State’s Developmental Disabilities Network hold joint forums for public input into the process of developing the Council’s State Plan, the Protection and Advocacy’s Statement of Objectives and Priorities, and the University’s Workplan.   

CHAPTER I

## Developmental Disabilities Councils and Protection and Advocacy Systems

Under the Act, each Council is required to develop a State Plan that includes a comprehensive look at which services and supports are “available to” and “needed for” individuals with developmental disabilities and their families.  The plan must specify priority areas selected by the Council that address advocacy, capacity building and systemic change activities.

The P&A program provides for the protection and advocacy of legal and human rights.  The P&A systems provide advocacy services to individuals with developmental disabilities in education, abuse and neglect, institutional and habilitation services, guardianship, and housing issues.  These systems have provided individual advocacy to approximately 40,000 clients each year, pursue class-action advocacy on behalf of hundreds of thousands each year, and also provided training and information and referral services to additional thousands.

In Fiscal Year 2000, DDCs were awarded $65,750,000 and P&As were awarded $28,110,000.  In pursuing their respective mandates, these programs are working towards improved outcomes in the six Roadmap areas as reported through the EDS system.

## Employment 

## Arkansas

One hundred and forty-eight individuals with developmental disabilities obtained employment consistent with their interests as a result of Council activities during Fiscal Year 2000.  These individuals were employed with hourly wages ranging from $5.15 to $10.65 with an average wage of $6.65.  They worked part-time, full-time and 4 persons own and operate their own business.  Seventy-eight employers received training to assist individuals with disabilities in obtaining and maintaining employment.  Training sessions included information on employment, supporting the individual needs of individuals with developmental disabilities, mentoring, and the Americans with Disabilities Act (ADA) regulations.   Five hundred and ninety-three people (including people with disabilities) received training about employment, and 91 persons (including people with disabilities) were active advocates focusing on the issue of employment. 

As more individuals with developmental disabilities become successfully employed, additional opportunities are open to them.  Four individuals moved into their own homes and two individuals have married and are living independently.

## New York

During Fiscal Year 2000, the New York State (NYS) Developmental Disabilities Planning Council (DDPC) focused on developing partnerships and collaborations that make diverse resources of key stakeholders available for individuals with developmental disabilities seeking employment.  There were 13 employment grants in 3 focus areas.

An essential component to creating employment opportunities for individuals with developmental disabilities was the active involvement of the employers/business community.  DDPC worked with the Job Service Employer Committee (JSEC) to increase the knowledge of small business on benefits/incentives for hiring individuals with developmental disabilities.  JSEC provided technical assistance to 2,000 NYS employers on ADA compliance, hiring/interview practices, accommodations, technology to assist individuals with developmental disabilities, employee assistance programs, and federal/state tax incentives and engaged 1,000 employers committed to hiring individuals with developmental disabilities.

DDPC initiated a Business Leadership Network (BLN) for creating employment opportunities for individuals with disabilities in New York City.  This was a national initiative of the President’s Committee on Employment of People with Disabilities.  Under the corporate direction of Verizon, participation of Merrill Lynch, Chase, Time-Warner, MetLife, Citibank, Price-Waterhouse-Coopers and Exceptional Parent Magazine has occurred.

DDPC further developed its placement initiative by adding a temporary staffing services component.  The 9 companies have built successful local collaborations, streamlined recruitment for employers, realized efficiencies in job development and supports and created employment opportunities.   Over 1,000 individuals with significant disabilities have obtained employment with an average cost per placement of $1,900 (a low rate for such placements).  Two companies have expanded into temporary services using different models (independent staffing agency and working arrangements with existing agencies).

DDPC explored the issue of self-employment for individuals with developmental disabilities.  Self-determination activities have spawned interest in supported self-employment that holds promise for creating employment alternatives for individuals with entrepreneurial spirit.  In the pilot program, 20 individuals engaged in learning about small business development assistance in NYS.

## Idaho

The Idaho Council participated in several employment related activities.  The first involved the Council co-authorizing a benefits and planning grant to the Social Security Administration.  Collaborators included the Idaho Division of Vocational Rehabilitation, the State Independent Living Council, the Department of Labor, and Employment Development Corporation.  The State received $70,000 in grant funding to assist individuals with disabilities with employment opportunities and maintaining medical benefits.

A second effort involved Council staff researching information on self-employment, Business Leadership Networks, and other model employment programs.  They enrolled in an Internet-based course on Supported Employment offered through Virginia Commonwealth University (a University Center funded by ADD) and attended the Northwestern Regional Educational Laboratory Work Now and In the Future Conference.  This training will assist the Council in future employment projects.  

Finally, the Idaho Council was part of the Bureau of Special Education, Secondary Transition Workgroup.  An interagency agreement was developed to improve transition services for youth from education to employment or post secondary education.  This project is on going.

## Oregon

The Oregon Protection and Advocacy Center worked with a 19-year-old student with Down Syndrome who was transitioning from high school to employment upon graduation.  Through their actions on behalf of this young man the school district was compelled to provide life skills training twice a week and find two job placements for him in the community in which he resided.

## Texas

Advocacy Inc., the Texas Protection and Advocacy agency provided assistance to seven private attorneys in Title I American with Disabilities Act cases (employment).  Advocacy Inc. provided assistance in drafting complaints and providing case law research. 

## HOUSING

## Alaska

The Alaska Council participated in several activities tied to housing.  One such project involved informing policymakers on SB73, the Alaska Assisted Living Bill, that increased the assisted living rate over a three-year period from $50 to $70 per day.  The Council worked with the Alaska Mental Health Trust Authority, the Alaska Commission on Aging, the Alaska Mental Health Board, the Advisory Board on Alcoholism and Drug Abuse, the Alaska Department of Health and Social Services and the Alaska Department of Administration and advised the legislature on the impact of this legislation for individuals with developmental disabilities.

The Council secured $125,000 for housing modifications from the Alaska Mental Health Trust Authority and the Alaska Housing Finance Corporation, which then allowed 26 individuals with developmental disabilities to live in the homes of their choice.

Through the efforts of the Council $329,700 were appropriated for special needs housing for individuals with developmental disabilities and 13 housing units were built or renovated as a result of these funds.   

Finally, as a result of the Council’s advocacy efforts with the Division of Mental Health and Developmental Disabilities, the waiting list for community services was re-evaluated and 103 individuals with developmental disabilities received residential services and supports in Fiscal Year 2000.

## Maryland

The State of Maryland has taken the issue of waiting lists and the need for community living very seriously in recent years. 

The Governor of Maryland established, through the Council’s leadership, a statewide program to provide low interest mortgages to individuals with disabilities.  Going into its third year, with a budget of $1.5 million, mortgage loans were offered at a fixed interest rate ranging from 0% to 5% (based on what individuals could afford).  

To support this effort the Council, in partnership with the Developmental Disabilities Administration and the Mental Hygiene Administration, funded the Maryland Center for Community Development.  The Center trained housing counselors, realtors and lenders throughout the state on the housing initiative and established a toll-free information and referral line.  Since the beginning of the program, 123 individuals with disabilities purchased homes through the program, 73 during Fiscal Year 2000.

The Council also served on the Advisory and Steering Committees of The Arc (formerly the Association of Retarded Citizens) of Anne Arundel County Opening Doors Project.  This project was funded by the Kennedy Foundation to assist individuals with mental retardation and related developmental disabilities in directly renting or purchasing homes.  The project began in Anne Arundel County, where, working with the local housing authority, the county was able to get 150 mainstream Section 8 vouchers for individuals with disabilities.  Fiscal Year 2000 was the first year of this program and work has begun in Montgomery County and work was planned for Baltimore City in Fiscal Year 2001.

## Texas 

The following grant activities of the Council assisted Texans with disabilities (including individuals with developmental disabilities), to become homeowners and increase independent living choices through the design, development, implementation and replication of best practices home ownership projects.

Over 350 Texas Home of Your Own (HOYO) Potential Homebuyer Profiles were received from the Austin, Houston and El Paso areas.  A total of 59 individuals have purchased homes with assistance from the Texas HOYO Project.  Additional funds for activities have been received from a variety of sources including the Texas Department of Housing and Community Affairs, and two private lending institutions.

These funds have been used for downpayment assistance, home improvement activities, maintenance equipment, and architectural barrier removal.  Information regarding these housing projects were disseminated to disability organizations, community action agencies, consumers, elected officials, and housing organizations.  Formats have included funding alerts, fact sheets, homebuyer profiles, the Housing Choices manual, brochures, and introductory letters.  The Texas HOYO project conducted the organizational, administrative, budget, and contract activities necessary to implement the Fannie Mae HomeChoice loan product and to expand the service area in which the loan product was available.

## New Jersey

The New Jersey Protection and Advocacy, Inc. (NJP&A) intervened on behalf of a twenty-one year old man with cerebral palsy.  The young man and his father attempted to rent an apartment in a private apartment complex.  At the time the father filled out the rental application the clerk made discriminatory remarks about the son and his ability to live in the apartment.  They were never contacted about any vacancies.  The NJP&A filed an administrative complaint with the Department of Housing and Urban Development (HUD).  After their investigation the NJP&A and the apartment management successfully negotiated a settlement providing for the young man and his father to rent a two-bedroom apartment with the first month rent-free. 

EDUCATION

## Alabama

The Council sponsored ARC (Association for Retarded Citizens) of Jefferson County Inclusive Daycare Project that leveraged $105,600 for child development and resulted in the active participation of daycare administrators in an area wide daycare director’s network.  Forty-four day care personnel were trained including children with developmental and other disabilities in regular classrooms.

The Special Education Policy Project leveraged $18,392 from state funds for a Model School Inclusion Awards Program.  Three hundred people were trained to include children with developmental disabilities in regular education classes and 37 people advocated for improved education for children with developmental disabilities.  

With the Alabama Transition Initiative (ATI) 11 students received the education and support needed to reach their goals.  One hundred and thirty-one parents were trained in inclusive education and their children’s educational rights.  Four hundred and thirty-three students have transitioned from school to community and jobs as a result of the ATI project. 

The Partners in Policymaking project trained 34 people, including parents, in inclusive education.  The parents were also educated about their child’s educational rights in the school system.  Twenty graduates of the Partners program have taken an active role in advocacy about inclusive education in their child’s school systems as well as at the State level.

## South Carolina

The South Carolina Developmental Disabilities Council awarded four grants in the area of education.  Through these advocacy, systems change and capacity building activities with the school system, two thousand, five hundred, and thirty-three students received the education and supports necessary to reach their goals.  There were 3,511 students who transitioned from school to the community or employment.  Sixty-seven education districts improved their programs or policies by providing an occupational diploma or created co-ops.  Clemson, Piedmont Tech, Midlands Tech, Greenville Tech and Spartanburg Technical Colleges became inclusive educational programs.  One hundred and seventy two schools improved their Individualized Education Program practices, 257 people facilitated inclusive education and 85 job coaches were trained in inclusive education, while 3,368 parents were trained regarding their child’s educational rights.  In-service training was presented to 16 school districts and 200 teachers to improve their school wide transition programs.  An International Transition Conference instructed over 600 educators, parents and students on transition and transition related services.  Transition information concerning current trends was disseminated to all 86 school districts in South Carolina, as well as, The School for the Deaf and the Blind.  Consumer affairs information was presented to all 86 school districts for use in their schools.

## Puerto Rico

Through the intervention of the Protection and Advocacy office, an 11-year-old female student with developmental disabilities was provided with accessible transportation services.  She was then able to attend classes every day and her grades improved.

## Virginia

The Protection and Advocacy office in Virginia is called the Department of Rights of Virginians with Disabilities (DRVD).  This office employed contract counsel for a 5-year-old with Down’s Syndrome and significant medical needs.  The child, residing in a nursing home outside his home local education agency (LEA) was not receiving educational services from home or outside LEA.  Counsel intervened; the home LEA found the child to be eligible but would not provide services other than limited homebound activities because the parent placed the child in a nursing home.  The State education agency (SEA) was notified of the situation but did not intervene.  DRVD counsel filed due process litigation against the LEA and SEA.  A hearing officer found the county in which the nursing home was located responsible for educating the child.  That LEA appealed.  A reviewing officer (RO) found that the home LEA and the SEA were responsible for ensuring a free appropriate public education was provided to the child.  The RO ordered an individualized education program (IEP) be developed to place the child at an appropriate school in the county where the nursing home was located, at SEA expense until the LEA assumed full responsibility for this child’s education.  Compensatory education for the child from both LEA and SEA were also ordered.

## Wyoming

A mother contacted the Wyoming Protection and Advocacy System, Inc. (WYPA) regarding help for her 6-year-old son with developmental disabilities.  The school recommended a program that required busing him 10 miles away from home.  The mother believed that the school system was labeling her son “mentally retarded” by sending him to another district for special education with mainstreaming into other classes.  The school’s concern was that he needed a total communication program that included interpreters.  WYPA suggested that the child’s placement be in the neighborhood first grade and in a regular classroom setting with pullout time into special education classes for communication skills training.  The mother agreed to this solution and follow-up contacts indicated the child was making excellent gains.

HEALTH

## Nevada

The Council supported the expansion of a donated dental service project in Las Vegas to provide dental services to individuals with developmental disabilities as well as other disabilities and families and seniors with low incomes.  The mobile dental unit that travels from school to school saw over 1,000 children in Fiscal Year 2000 for exams and restorations.

## Iowa

The Council supported activities that assisted 1,550 Iowans with disabilities in maintaining employment and needed health care benefits through the Medicaid for Employed Persons with Disabilities program.

The Council also worked with other State organizations to obtain money from the Tobacco Settlement fund to expand home health care services and day care under the medical assistance program for children with special needs ($4.4 million).  A waiver request in the amount of $35,000 was obtained from Center for Mental Health Services to implement a pilot project to study continuous eligibility for children (including those with disabilities) receiving Medicaid. Also $2.0 million went towards raising the reimbursement rates for service providers in counties with limited mental health/developmental disabilities resources.

## Massachusetts

The Council participated on the Coalition for Managed Care Quality, educating policy-makers on health care issues impacting individuals with developmental disabilities and their families.  The coalition’s efforts resulted in the passage of state legislation, the Patient Protection Managed Care Reform Act. 

Another legislative effort involved the Council’s involvement on the Statewide Personal Services Coalition, working with Medicaid and Center for Mental Health Services to establish consumer control of personal assistance services.  The Coalition was successful in establishing a pay increase for personal care assistants, working with Medicaid to resolve tax and liability issues for consumers, and developing state legislation entitled the Personal Care Assistance Bill of Rights Act.

## Georgia

More than 20 medically fragile children in Georgia received legal and other advocacy support from the Protection and Advocacy office, making it possible for them to use Medicaid waiver services in their homes, rather than be hospitalized.  One example is that of W.C.J., a six-year-old medically fragile child who’s home nursing hours were being reduced by Georgia Medicaid.  Other complicating issues included lack of a pediatrician in his home county, as well as the inability of the nursing provider to find qualified nursing staff in the county.  After a hearing, but before a decision, a compromise was reached that included the family accepting non-skilled nursing assistance and Medicaid providing monitoring equipment that would help in the case of an emergency.  Medicaid also agreed to assist the family in obtaining a waiver for the grandparents, whose care needs had been draining the family’s energy and resources, and to work with the provider in coming up with additional nurses.  

# Community Inclusion

## Kansas

The Kansas Council supported three transportation projects in Fiscal Year 2000.  Through these efforts 14,274 affordable, accessible rides were provided to individuals with disabilities in three Kansas communities.  Prior to these projects individuals did not have access to timely, affordable transportation.  All three projects will continue in Fiscal Year 2001 without Council funding.

## Idaho

In collaboration with the Idaho University Affiliated Program and others, the Council facilitated and supported writing the federal Family Support grant proposal.  The $200,000 grant from ADD was awarded to the Center on Disabilities and Human Development.  In Fiscal Year 2000 the Center established a policy council that was comprised of family members and individuals with disabilities who will guide the implementation of the project – to strengthen support systems, provide training, incorporate statewide philosophy of family support.  The Center has designed curriculum and workshops on self-determination to increase supports to aging families and families in rural and remote areas.  A major accomplishment is the creation of a family support website and bulletin board that establishes a link for families to support services, organizations, and adaptive equipment.    

## Georgia

The Child Care Task Force of the Council developed a set of recommendations to respond to the need for greater options and supports for children with disabilities in day care settings.  From those recommendations, a decision matrix and protocol was designed for use by resource and referral agency information hubs for child care in the state.  As a result, the Division of Family and Children Services allocated $1.3 million to fund a new position in each resource and referral agency to support children with disabilities in day care and established a State central coordinator position to oversee the program.

The Council also funded a rural transportation project to educate consumers about services and budget development.  Instruction was provided and three coalitions were formed.  Accomplishments included: a county transit system ordered three paratransit vehicles, a new 2-van system was started, and a voucher system and additional funding was obtained for an existing system in the state.

## Washington

The Council funded several socialization/recreation projects designed to provide opportunities for individuals with developmental disabilities to attend and participate in community events of their choice.  Projects included: social hours with music and dancing, computer-training classes, matching individuals with developmental disabilities with non-developmental disabilities volunteers in the community who have similar interests, including children with developmental disabilities in day camps and adults with developmental disabilities in walks.  The projects reported tangible results with participants having formed new friendships and feeling more included in their communities.

The Council also funded a project on parenting.  Home visits and parenting skills training were provided to four families where at least one parent had a developmental disability.  Through this effort parenting skills improved and the children stayed with their natural parents.

The Washington Protection and Advocacy System (WPAS) was very involved in community inclusion.  Over two hundred and fifty individuals with developmental disabilities who ended up in a State psychiatric facility due to lack of appropriate supports in the community were moved to the community and received the needed appropriate supports as a result of a class action filed by the P&A.  The legislature funded over $35,000,000 worth of supports and services to fulfill the settlement negotiated between WPAS and the State. 

## Maine

The Council assisted Public Broadcasting Service (PBS) with the video entitled “What About Lindsay?”  This production won a PBS Northeast Emmy Nomination and was aired three times due to public demand.  The film depicts individuals with developmental disabilities making choices on where they want to live and what types of housing options are available and the supports necessary for an individual to be successful in those residences. 

## Kentucky

Negotiations by the P&A with Department for Community-Based Services staff led to a re-writing of the child placement regulations.  State foster care children now may be placed in Supports for Community Living homes, if appropriate, as long as the child placing agency and the State agency with custody of the child agreed with this arrangement.  

SELF-DETERMINATION

## Colorado

The Council supported the efforts of a parent-to-parent group that used a website to provide a forum for family members to correspond with each other about personal issues and about policy issues in the areas of education, medical care, behavioral support, legislative information and advocacy, and coalition-building.  This effort has helped families and individuals with developmental disabilities determine for themselves the types of supports they want and need to succeed in life.

## Florida

The Choosing and Planning project of the Florida Council collaborated with the developmental disabilities state agencies to develop information for consumers, families and support coordinators on choosing services as well as all available services and supports.  An unprecedented $200 million influx of dollars available for consumers to meet their needs in response to lawsuits, in combination with these educational and information materials, gave consumers and families the tools to determine their services and supports.  Over 50,000 catalogs and 6,000 videos were made available statewide in English and Spanish.

The Florida Council completed a training program at a State-operated institution in the concepts of person-centered planning (PCP).  This is where services are planned looking at the specific needs of the individual and their preferences rather than establishing a program based on what is available or is routinely performed.  Six staff was selected to train others, over 500 staff have now received training in PCP and implementation of plans to support individuals with developmental disabilities.  Person-centered planning also allows residents the opportunity to evaluate their progress and in Fiscal Year 2000 19 individuals moved from this institution to the community.

## Maryland

The Maryland Council supported several self-advocacy and leadership projects in Fiscal Year 2000.  Partners in Policymaking trained 30 parents and self-advocates from 12 counties to advocate for choice and services in a positive way.  A Youth Leadership Forum was held over 4 days for students with disabilities that emphasized team building and personal leadership.  The Council sent two people to attend Project Leadership to expand their understanding of and involvement in federal disability policy development and implementation.  Three self-advocacy organizations, Campaign for Freedom, the Arc (Association of Retarded Citizens) of MD, and People on the Go, conducted a Leadership Retreat, a statewide self-advocacy conference and a legislative reception.

## Montana

The Montana Council supported a training project entitled, Life Long Options for Independence.  This training allowed individuals with developmental disabilities, as appropriate, to become their own case manager, thus allowing greater personal freedom.

## Nevada

The Council continued the Consumer Leadership fund which provided 199 people (parents of children with disabilities (including developmental disabilities), and adults with developmental disabilities the opportunity to attend various workshops and training related to self-determination, e.g., the Down Syndrome Conference and the National Autism Conference.

PROTECTION AND ADVOCACY ISSUES TIED TO THE INTERAGENCY COMMITTEE ON DEVELOPMENTAL DISABILITIES

The Interagency Committee on Developmental Disabilities (ICDD), established under the Developmental Disabilities Assistance and Bill of Rights Act, as amended, coordinated and planned activities by Federal agencies for individuals with developmental disabilities.  The Administration on Developmental Disabilities serves as the lead agency for the joint planning and coordination of subcommittee activities.  Other members include representatives from the Substance Abuse and Mental Health Services Administration (SAMHSA), the Center for Mental Health Services (CMHS) and the Rehabilitative Services Administration (RSA).  The Advocacy Subcommittee met monthly to identify and promote coordinated and maximally effective policies, regulations, and activities protecting and advancing the rights of individuals with developmental disabilities.  The Subcommittee focused on programs to increase independence, productivity and community inclusion.  The goals of the Subcommittee are as follows:

· To share timely and relevant information regarding each agency’s advocacy programs and activities;

· To identify areas of common interest (“crosscutting” issues);

· To develop and implement collaborative policies, procedures, and regulations that facilitate the coordination of technical assistance and the sharing of data and other important information on an interagency basis in order to reduce duplication of effort and maximize the use of existing resources;

· To identify legislative, regulatory, policy, and procedural conflicts and barriers between agencies and to develop and propose to the full ICDD solutions for addressing these barriers and conflicts;

· To make recommendations to participating agencies that will enhance collaboration that either directly operate or impact advocacy programs.

The Advocacy Subcommittee worked to address ongoing and emergent program issues of the administration, oversight and monitoring, and delivery of technical assistance and training for the five Federal Protection and Advocacy Programs.  Subcommittee activities included: planning and conducting joint technical assistance, including negotiation of a new contract funded through an interagency agreement; on-site reviews, and joint responses on emerging issues, lobbying and reporting of program income.

Interagency Agreements tied to Protection and Advocacy System

## Interagency Agreement between the Department of Health and Human Services, Public Health Service, Substance Abuse and Mental Health Services, Center for Mental Health Services and the Rehabilitation Services Administration, Office of Special Education and Rehabilitative Services, Department of Education

A training and technical assistance (T/TA) contract was funded jointly via interagency agreements with the Substance Abuse and Mental Health Services Administration (SAMHSA), the Center for Mental Health Services (CMHS) and the Rehabilitative Services Administration (RSA) to the Administration on Developmental Disabilities (ADD).  As the contract was up for competitive bid in Fiscal Year 2000 ADD wrote the requirements for the new T/TA contract with input from the other Federal partners.  For the first time, the Program Support Center of the Department took over contracting responsibilities for the Administration on Children and Families (ACF) and the Administration on Developmental Disabilities.  

The Federal partners meet on a monthly basis with the inclusion of National Association of Protection and Advocacy Systems (NAPAS) contract staff.  All training and technical efforts were monitored and planned at these meetings.  The Committee addressed any issues dealing with the contract and other policy issues as they related to the P&A program jointly.  All documents produced under the contract were edited (on average, five monthly publications).  The partners continued to participate in the subcommittee meetings under the contract and provide Federal guidance.

The Federal partners completed the following major efforts:

· As a result of Federal participation and guidance from ADD, CMHS and RSA, the Passport to Advocacy Learning (PAL), the first skills-based curriculum developed by the training committee under the P&A T/TA contract, was introduced at the June ATTAC/NAPAS Annual Conference.   All workshops at the national training and conferences were developed to reflect these skill areas.  It was well received by the attendees, including Board and Advisory Council members.  All Protection and Advocacy staff as well as the Board of Directors and the Advisory Council members were encouraged to participate and earn a Competency Certificate.

· Lobbying and the reporting of program income were two key issues for the Protection and Advocacy system this fiscal year.  These issues were addressed in consultation with the Federal partners and in the case of crosscutting initiatives, the Office of Grants Management, the Office of the Inspector General (OIG), the Office of the General Counsel (OGC), the Regional Office staff provided input for national training.

· The Federal partners included the Office of the Inspector General’s Office of Audit Services (OAS) in addressing these issues.  OAS staff presented at the annual P&A Fiscal Management Training and presented at the June Annual Conference that included over 500 attendees nationally from various agencies and organizations.   The workshops were geared to P&A financial managers and Executive Directors.  OAS staff addressed such topics as internal controls, lobbying and reporting of program income.  They presented on the federal regulations and laws applicable to proper management of federal funds.  They were able to cite specific examples from P&As that were audited.  These workshops have resulted in a reduction of fiscal compliance issues during federal on-site monitoring visits.

· OAS invited ADD and CMHS lead program specialists to present a one-day orientation on the P&A program and abuse/neglect investigations at their Regional conference in Rhode Island.  This invitation resulted from the OIG’s evaluation of their P&A audits by OAS staff.  They realized that their expertise was fiscal, but their knowledge of the program was minimal.  The program specialists explained the program and each agency’s laws and regulations.  The session was interactive and addressed any questions or concerns by the participants.  This open discussion has led to other collaborative efforts and a non-traditional Federal partnership.     

· The Federal partners also provided input and reviewed the OIG report, Reporting Abuses of Persons with Disabilities (A-01-00-02502).  As a quality assurance mechanism, the Federal partners recognized that the OIG must be included in discussions as states move toward implementation to assure individuals with developmental and other significant disabilities are protected from abuse and neglect.  The OIG continues to be included in discussions and serve as a resource to the Federal partners.  They have also consulted on various P&A monitoring reviews and prompting other national studies ADD has forged other partnerships with Federal, state and national organizations to promote systemic change.

· An initiative, Managing for Results, was identified under the Training and Technical Assistance contract with NAPAS.  Activities included:

· Arizona focused on centralizing their intake and information functions.  The new structure focused on developing one centralized protocol and supervision.

· Arizona, Maine and Michigan resulted in a re-organization.  They moved to a more functional organizational structure.

· Maryland, Missouri and Nevada primarily concentrated on developing a series of focus groups to obtain input from their consumer base.

· Iowa concentrated on Board orientation and worked with staff around roles and job responsibilities.

· Virginia concentrated on Advisory Committee training.

· West Virginia concentrated on Board training and internal management issues.

· As part of the monitoring responsibilities of the T/TA contract, two of the four National meetings/conferences were held in Washington, D.C.  Also, the Federal partners provided an orientation for new staff at the NAPAS Annual Conference.  

CHAPTER II

# UNIVERSITY AFFILIATED PROGRAMS

The Administration on Developmental Disabilities supports a discretionary grant program for university affiliated interdisciplinary training, exemplary services, technical assistance, research, and dissemination.  In fulfilling their mission to positively affect the lives of individuals with developmental disabilities by increasing their independence, productivity, integration and inclusion into communities, University Affiliated Programs have advocated for individuals with developmental disabilities and their families and promoted self-determination activities.  Many Universities have provided services to unserved and underserved populations.  University Affiliated Programs serve as liaisons between academic expertise and institutions of higher learning and service delivery systems so as to positively affect the lives of individuals with developmental disabilities and their families.

The Administration on Developmental Disabilities awarded $18,171,000 in Fiscal Year 2000 to support the activities of University Affiliated Programs.

The network of partners implementing the developmental disabilities programs had a vision through the areas outlined in the Roadmap.  Examples of UAP accomplishments are as follows:

# EMPLOYMENT

## University of Maine

The University of Maine established the Opportunities to Completion Project, which worked toward ensuring access and support for continuing education at the college level.  This capacity-building project targeted recruitment for traditional and nontraditional students, such as older people and individuals with disabilities.  It included a training model for academic advisors and outreach to enhance the climate on campus.  A video and media announcements were produced, as well as a brochure on inclusion of persons with disabilities that continues to be included in response to every request for University of Maine admission materials (over 3,000 packets).  Another outcome was funding for summertime personnel in the Office for Students with Disabilities.

## Temple University (Pennsylvania)

Temple University is a national and international resource in the areas of assistive technology and augmentative communication.  “E-Coaching,” on-line information to support employment of individuals with significant disabilities was offered through this university.  Staff provided training and technical assistance to expand the capacity of providers of services and individuals with disabilities to maximize potential for meaningful and productive employment. 

Eight of the participants were followed in Fiscal Year 2000.  One person went on to full-time employment and three others found part-time work.  The areas of employment included bookkeeping; grounds work at a church, and working in a bookstore.

# Housing

## University of Southern Mississippi

The University of Southern Mississippi has been a leader in promoting the concept of a “home of your own” (HOYO) for individuals with developmental disabilities.  Through training and technical assistance to an Independent Living Center and a local housing authority, home-owning options and strategies were developed that have become cost-effective and empowering alternatives to institutional and other residential placements.  The HOYO project provided 24 homes for individuals with disabilities across the state.  Also, the Center received the Housing and Urban Development (HUD) best practices National Certificate of Recognition for its leadership role in ADD’s Home of Your Own Project.  

## University of New Hampshire

The National Home of Your Own Alliance at the Institute on Disability was created by ADD in 1993 to promote home ownership for individuals with disabilities through nontraditional income streams and federal, state, and local subsidies structured for people historically excluded from the housing market.  Between 1993 and 2000 more than 900 individuals were assisted in buying homes through this initiative.  State coalitions accessed assets for buying down mortgages, providing second loans for down payments, closing costs, and rehabilitation; funding program operating costs; providing homeownership counseling; and offering below-market loans or grants.  Monies were accessed through Fannie Mae, HUD HOME, Housing Finance agencies, Federal Home Loan banks, Developmental Disabilities Councils, and private mortgage companies.  

The expertise developed through the Home of Your Own initiative of this Center was utilized in the incorporation of underwriting concepts and language by the Fannie Mae Home Choices Program and in the preparation and dissemination of 3,000 copies of a 200-page guide to home ownership for housing counselors.

EDUCATION

## Northern Arizona University

Northern Arizona University collaborated with the Navajo Nation to develop a national consortium of American Indian tribal early intervention programs.  Clinical services were provided to 155 Native American clients in 2,783 contact hours.  The University also provided community-based training and technical assistance in vocational rehabilitation to 12 tribal governments and support to the Consortia of Administrators for Native American Rehabilitation in their efforts to increase and enhance service quality.  Research addressed disability and employment outcomes, consumer satisfaction and employment outcomes for rehabilitated and non-rehabilitated American Indians, and improvement of employment outcomes for American Indian youth and adults with learning disabilities, depression, and fetal alcohol syndrome.

## University of Minnesota 

The University of Minnesota assembled 20 technical assistance teams of early intervention faculty, school psychologists, speech/language pathologists, social workers, mental health educators and family members in four States to provide help in developing positive behavioral support plans.  Strategies for service providers regarding challenging behaviors were also presented in workshops including such topics as classroom organization, optimal staffing patterns, and adapting educational tasks to meet the needs of children with a propensity to engage in challenging behavior.  From May through October 2000, the Positive Approaches to Challenging Behavior for Young Children with Disabilities outreach website had 93,356 hits from 9,233 visitors.  The capacity building through training and technical assistance is an example of university activities that resulted in improvements in the lives of children with disabilities and their families.

# HEALTH

## University of Illinois at Chicago

The University of Illinois at Chicago was designated as a Center for Disease Control and Prevention Center on Health Promotion Research for People with Disabilities.  The University studied such conditions as arthritis, diabetes, stroke, spinal cord injury, Down syndrome, and prevention of risk factors for secondary conditions in Chicago minority communities.  It established a health promotion program that included exercise, nutrition, cooking instruction, peer support/health behavior classes, assistive technology, and rehabilitation.  Another Center for Disease Control funded initiative was the National Center on Physical Activity and Disability, a collaborative effort of the University, the Rehabilitation Institute of Chicago, and the National Center on Accessibility at Indiana University.  The University maintained a website and provided information through more than 20 newspaper articles, over 150 public service announcements, and over 5,000 copies of materials at 17 national and local conferences.

The University also was designated by the National Institute on Disability and Rehabilitation Research as a Center on Emergent Disability.  Over 40 professionals from universities, medical centers, government and community agencies, and advocacy groups collaborated in studying the changing impact of major demographic, health, social, and economic trends on the manifestation of disability in the United States.

## New York University Center (Westchester Institute for Human Development)

The Center supports the Consumer Resource Center, a service for adults with developmental disabilities and their family members.  Using a person-centered approach, service coordinators assisted individuals and family members in identifying and obtaining needed services.  The staff is comprised of parents of adults with developmental disabilities.  Their experience and peer-to-peer support is supplemented with that of friends, neighbors, co-workers of the adults with developmental disabilities, and others in the community.  Consumer satisfaction with outcomes is an important element of monitoring and evaluating activities.

Activities and accomplishments included the following:

· four workshops for adults with developmental disabilities (20 participants); 

· six-session workshop on exploring options for community residential alternatives (ten participants);

· four workshops for adults with developmental disabilities and their families on nutrition and speech and hearing (25 participants); 

· person-centered information session (20 participants); 

· 1 workshop on breast cancer awareness (20 women with developmental disabilities); 

· Sixth Annual Positive Strategies Conference (165 participants and presenters, including professionals, direct care staff, and family members); 

· poster session on results of consumer satisfaction survey (200 attendees of AAUAP annual  conference); 

· 400 calls from consumers, family members, and professionals on such concerns as respite, recreation, supported living and employment and managed care;

·  articles on approach of utilizing parents as service coordinators.

COMMUNITY INCLUSION

## Child Care

##  Indiana University 

Indian University participated in the Map to Inclusive Child Care Project, a federally funded statewide systems change project for high-quality, accessible child care for children with developmental disabilities.  The University collaborated with the state early intervention and special education system providers, the Department of Health, and organizations such as the Indiana Parent Information Network.  Indiana University developed surveys on the needs of families for childcare, with more than 1,000 returned for analysis.  More than 61% of respondents were found to use family members and 35% used center-based care.  Eleven percent felt they had been refused enrollment or that services had been terminated because of their child’s disability.  The project report was distributed to Indiana’s legislators, key State decision-makers, and local planning councils. 

## University of the Virgin Islands

The University of the Virgin Islands provided pre-service training through its inclusive Early Childhood Education Certificate and Associate Degree Programs.  With a focus on developmentally and individually appropriate programs for all children and the inclusion of children with disabilities in childcare and Head Start preschool settings, the University had a significant role in influencing child care licensing standards throughout the Virgin Islands.  During Fiscal Year 2000, 61 Virgin Islanders completed the required courses to earn a certificate and 10 students an Associate of Arts degree.  The number of children who benefited was approximately 497.  Seventeen childcare centers participated in training for directors, impacting 340 children.  Four hundred and twenty-three individuals attended an annual early childhood education conference.  An early intervention library program provided information to students, child care providers, teachers and parents.  Five hundred children benefited from this initiative. 

## Recreation

## University of Alaska

The University of Alaska supported a Learning Enrichment Adventure Program that integrated recreation and outdoor education for children and youth with and without disabilities (including developmental disabilities).  The results of this program indicated not only an increase in exercise and mobility for the children but improvements in socialization and independence.  Participants also gained valuable experience in teamwork, personal challenges, and self-confidence that will help these children prepare for community participation and opportunities for employment.  

A total of 30 youth with a variety of disabilities participated in weekly outdoor recreational activities.  When federal funding ended, the program was continued as an after-school project at two high schools on a fee-for-service basis.

## Minot State University (North Dakota)

The work of Minot State University in North Dakota reflects a lifespan approach.  Multidisciplianry teams of trainees worked in retirement facilities with 100 older individuals with developmental disabilities in creating recreational plans monthly activities in music, poetry, movement and crafts.  In the Teens Being Teen project, 15-20 youth with disabilities from ages 13 to 18 with disabilities joined together with partners without disabilities in ongoing monthly events such as picnics, movies, and roller-skating.  A manual was prepared for the teen project that has been replicated and disseminated to others in the State, such as regional children’s councils.

## Transportation 

## Mailman Center at the University of Miami (Florida)

Throughout the state, many of the families served by the Mailman Center at the University of Miami in Florida are in suburban and rural communities where transportation to necessary services is a major concern.  For families unable to travel, the Mailman Center provided a pediatric mobile van staffed with a physician, a nurse, a psychologist, and a nutritionist, as well as trainees in social work, audiology, and law.

The Pediatric Mobile Clinic provided primary care to over 2,500 children, most of whom did not qualify for health insurance coverage.  Over 2,300 of the children served were of Hispanic origin and the remainder were African-American, Caribbean, and non-Hispanic white.  Most children served were provided care in their mother’s preferred language.  Screening resulted in a significant number of medical and developmental diagnoses, including dental, visual, hearing, speech, neurological, and mental health problems.  In addition to follow-up care, children with significant developmental delays or disabilities were referred to community or Center programs.

## University of Montana in Missoula

The University of Montana in Missoula provided input to the state on a rural transportation system.  A voucher program was recommended that would address the needs of families, many of whom are in rural and remote areas.  The University worked with members of a consumer support group, Centers for Independent Living, and the Developmental Disabilities Council (of which more than 50% are family members or consumers with disabilities).

Also, the University recognized the logical connection between accessible transportation and opportunities for employment of individuals with developmental disabilities.  With a strong interest in employment and transition from school to work this University used Social Security work incentives, transition systems change activities, and a series of Workforce Investment projects focused on establishing supported employment and self-employment outcomes in rural settings.  

# SELF-DETERMINATION

## Oregon Health Sciences University in Portland

The Oregon Health Sciences University in Portland focused on the underserved population of women with disabilities (including developmental disabilities), in particular, a Violence Prevention Initiative with the World Institute on Disability.  With input from72 women in focus groups and 330 additional women to validate focus group findings, this project developed an abuse screening tool, field tested with 47 women, and a curriculum, field tested with another 70 women, for identifying and responding to abuse and managing personal attendants. 

Findings indicated that women with disabilities experience abuse at about twice the rate of women without disabilities.  The abuse can be physical, financial, manipulation of medications, destruction or withholding of needed equipment, and neglect of personal care needs.  These findings were the basis for a Call to Action Summit and Paper with 100 leaders from the disability, criminal justice, and domestic violence community in Oregon.  Several research reports followed and similar initiatives focusing on men with disabilities were performed.

## University of Texas at Austin

The University of Texas at Austin had a quality of life improvement project that focused on input from individuals with a disability.  Funded through a Robert Woods Johnson Foundation grant to the Texas Department of Mental Health and Mental Retardation, it was called the Self-Determination Partnership: A Change to Person Centered and Outcome Oriented Services.  The University conducted training for more than 50 individuals in three pilot community mental retardation centers and performed research to determine the factors that lead to successful systems change activities based on this model. 

CHAPTER III

# PROJECTS OF NATIONAL SIGNIFICANCE

Under the Projects of National Significance (PNS), the Administration on Developmental Disabilities awards grants and contracts that:

· Promote and increase independence, productivity, inclusion and integration into the community of individuals with developmental disabilities; and

· Support the development of national and state policy, which enhances the independence, productivity, inclusion and integration of these individuals into the community.

The Administration on Developmental Disabilities awarded $10,244,000 in discretionary grants and contracts in Fiscal Year 2000.  Examples of key activities are as follows:

# EMPLOYMENT

Locating and maintaining successful employment is the key to independence, inclusion, and productivity for all Americans, including individuals with developmental disabilities.  In keeping with ADD’s goals, PNS funds have targeted complex employment issues regarding individuals who experience developmental disabilities and their service providers.  A project with United Cerebral Palsy of Southern Arizona designed and has now implemented an aggressive social marketing campaign to promote adaptations and assistive technology in employment and community inclusion for individuals with developmental disabilities.  In Boston, the Institute for Community Inclusion has completed an in-depth assessment of the program models and vocational services to determine the impact on individual employment outcomes.

# HOUSING

For the past 23 years PNS has been supporting a database on residential services for individuals with developmental disabilities and promoting projects for quality community services.  The University of Colorado Health Sciences Center completed ADD’s sixteenth “State of the States in Developmental Disabilities” study which includes a comprehensive profile and analysis of 50 states and the District of Columbia.  Information from the “State of the States” study is utilized by policymakers, program planners, services, providers, and advocates around the country to assess their State’s progress towards creating less restrictive community living options for individuals with developmental disabilities.

# EDUCATION/SELF-DETERMINTION

ADD’s PNS grantees support educational opportunities throughout the life span.  Recent projects focused on the education and training of individuals with developmental disabilities, from teenagers to senior citizens, to increase self-advocacy, self-determination, and leadership skills.  “Shifting the Power” in North Carolina trained and provided technical assistance to empower individuals, strengthen local advocacy groups, and encourage leadership.  “Mobilizing for Self-Determination” with the Human Services Research Institute utilized web-based communications to disseminate information on the principles of self-advocacy and the necessary skills for creating system change in an accessible format for individuals with developmental disabilities.  In collaboration with the Institute on Community Integration at the Research and Training Center on Community Living, the National Association of State Directors of Developmental Disabilities Services has established an extensive web site to promote promising practices and quality assurance for person-centered planning.  The web site is commonly referred to by advocates and professional as the Quality Mall and can be accessed by visiting www.QualityMall.org.  Visitors to the web site will find resources and products on person-centered planning, listings of upcoming events and related conferences, and live chats and on-going discussions on current topics.  ADD has been fostering promising practices in person-centered community services and quality assurance.  This PNS grant brings together consumers, families, government officials, service providers, and advocates to identify, evaluate, and disseminate information about contemporary best practices and innovations for supporting individuals with disabilities (including developmental disabilities) and their families.  The National Center on Self-Determination and 21st Century Leadership was a consortium of self-advocacy groups, non-profit organizations and institutions for higher education that has expanded opportunities for policy and leadership training to unserved and underserved populations through a PNS grant.   A total of 9 mini-grants were awarded to local and state self-advocacy groups to support leadership development, conference attendance, training activities, and consumer education for the recipient’s membership.  The average amount of these mini-grants was $5,000 each from the National Center.  The following organizations were the nine recipients for Fiscal Year 2000: (1) Jewish Family Service Association of Cleveland, Ohio; (2) People First of Socorro, New Mexico; (3) People First of New Hampshire; (4) People First of Wyoming; (5) Family Voices of Chicago, Illinois; (6) Memphis Independent Living Center; (7) Montana Citizen Advocacy Coalition; (8) People First of Ohio; and (9) People First Collaborative of Tennessee, Georgia, and Alabama.  Additionally, the Center maintained an informative web site, drafted principles for individuals and family self-determination partnerships, and developed consumer manuals such as “Show Me the Money: A Guide to Help Self-Advocates Get Funding from the Organizations that Serve Them.”  Additional awards in this area included the University of South Dakota, in partnership with Sinke Gleska University and the non-profit Management Institute to provide information and resources to the national Tribal College network.  Additionally, Prima Community College, an Hispanic serving institution, in partnership with the Pima Prevention Partnership, a community development non-profit organization, strengthened the capacity of minority organizations to involve individuals with developmental disabilities in their activities and compete for funding in Arizona.   

# HEALTH

Through the PNS grants ADD has supported and promoted a number of efforts to improve the physical well being and mental health of individuals with developmental disabilities.  During Fiscal Year 2000 projects focused on such areas as providing training to professionals, supporting individuals who have experienced abuse, promoting healthy lifestyles, and preventing teen pregnancies.  The “End of Silence” project at Temple University assisted persons with cognitive and speech impairments in conveying their personal stories of maltreatment and receiving equal protection under the law.  The “Personal Safety Awareness Center” in Austin, Texas increased the accessibility of domestic violence programs, crisis intervention, and counseling services for individuals with disabilities who were victims of abuse.  Activities of the “California Girl Power” project included mentoring young women with disabilities (including developmental disabilities) and providing information on women’s health issues to teenage girls.

# COMMUNITY INCLUSION

## Child Care

ADD continued to devote PNS funding towards addressing access barriers to quality childcare services for families of young children with developmental disabilities.  The Wisconsin Child Care Improvement Project through the support of a PNS grant, “Mobilizing Partners for Inclusive Child Car,” provided training on the Americans with Disabilities Act to over 300 child care facilities statewide.  While in the State of Pennsylvania, Community Legal Services has been working with families of children with disabilities (including developmental disabilities) that are residing in poverty.  This project, “Expanding Legal Services for the Poor,” assisted families in understanding their responsibility under welfare reform, changes in disability eligibility, and access to childcare services.

## Recreation

ADD recognizes the importance of access to recreational opportunities and social interaction in the lives of individuals with developmental disabilities.  For example, staff members of the Oregon Health Sciences University took a comprehensive approach to promoting healthy lifestyles for individuals with developmental disabilities by addressing physical and attitudinal barriers to fitness and recreational opportunities.  In Minneapolis, Wilderness Inquiry trained individuals with developmental disabilities in outdoor activities, such as kayaking and canoeing.  In addition to providing positive experiences and increasing self-esteem, PNS recreational grants reduce stereotypes and enhance the independence of individuals with developmental disabilities. 

Transportation

While there were no specific grants devoted solely to impacting the transportation needs of individuals with developmental disabilities in Fiscal Year 2000, each of ADD’s grantees acknowledges the limitations placed on one’s independence, productivity, and inclusion by the lack of reliable, affordable, and accessible transportation, many PNS grantees have to develop creative methods of transportation and encourage ride sharing to ensure that individual with developmental disabilities can attend training sessions and meetings, as well as secure employment.  ADD is planning future PNS announcements to solicit proposals specifically to address the needs for transportation.

INTERAGENCY AGREEMENTS TIED TO PROJECTS OF NATIONAL SIGNIFICANCE PROGRAM

## Interagency Agreement with Centers for Medicare and Medicaid Services (CMMS), the Social Security Administration (SSA) and ADD

A Family Support contract was established to provide training and technical assistance to minority families of children with disabilities (including developmental disabilities) to address problems that impede the self-sufficiency of these families.

The contractor, Human Services Research Institute (HSRI), sub-contracted with local leadership teams within a performance based arrangement to carry out the project.  Activities of the project included:

· The development and implementation of site specific technical assistance plans;

· The sharing of information about outreach best practices;

· Project information is featured on the HSRI web site (www.hsri.org) including information about each site across projects.  In the 42 ADD Family Support Projects noted successes thus far are building family leadership and advocacy; systems planning and direction and providing services and supports.  The noted challenges are: lack of funding; state leadership; collaborative advocacy; service delivery and contextual issues (things that are circumstantial and not in direct control of the project, e.g., geographical barriers such as large or rural sites.

## Interagency Agreement with the Social Security Administration

The Office of Disability of the Social Security Administration (SSA) began funding an interdisciplinary case assessment project with the American Association of University Affiliated Programs (AAUAP) in 1998-1999.  The members of the AAUAP are comprised of 61 University Affiliated Programs supported by funding from the Administration on Developmental Disabilities.  SSA partnered with the UAPs to benefit from their substantive expertise and interdisciplinary approach and their further ability to recommend services.  The purpose of the project was to determine if interdisciplinary assessments change the outcome of case decisions and improve the adjudication process with regard to eligibility for SSI benefits.  In 1999-2000 a total of 172 assessments were conducted on the following groups of children and young adults: (1) continuing disability reviews of children who qualified because of low birth weight; (2) preschoolers (ages 3-5) with cognitive, psychiatric or emotional impairments and (3) adolescents (ages 14-17) with cognitive, psychiatric or emotional impairments resulting in 53 Disability Determination Services allowances or continuances.  There were 45 “no-shows”.  These are cases of individuals who were referred by the Disability Determination Services office (the state agency that does disability determinations for SSA) to the University Affiliated Programs but who refused or failed to attend the examinations.  The remaining 94 cases were determined as not eligible for the program.  In June, 2000, the UAP assessments helped the agency support regulations regarding acceptable medical sources and the knowledge gained from the assessments provided input for the childhood regulations published in September, 2000.

Chapter IV

# CONCLUSION

There are nearly 4 million Americans with severe, chronic developmental disabilities attributable to a mental and/or physical impairment that manifested before these individuals turned age 22.    Developmental disabilities are likely to continue indefinitely, resulting in substantial limitations in self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency, and a continuous need for individually planned and coordinated services.  The programs and services supported under the Developmental Disabilities Act emphasize the empowerment of individuals with developmental disabilities and their families.  This report gives examples of how ADD’s programs, which are authorized by the Developmental Disabilities Act, work in partnership with State governments, local communities, and the private sector to assist individuals with developmental disabilities to reach their maximum potential through supports that promote increased independence, productivity and community integration and community awareness.  

Chapter V

# PROGRAM RESULTS

In FY 2000 activities by an ADD program (Councils, P&As, or UAPs) led to:

· 3,788 adults with developmental disabilities secured employment (Councils).

· 1,324 businesses employed adults with developmental disabilities (Councils).

· 7,308 individuals with developmental disabilities now live in homes of their own (Councils).

· 10,054 individuals with developmental disabilities secured a more appropriate education (P&As).

· 4,791 validated abuse complaints concerning individuals with developmental disabilities were resolved favorably (P&As).

· 4,032 health care providers were trained in the needs of individuals with developmental disabilities (UAPs).

· 25,677 individuals with developmental disabilities were provided legal/advocacy services (P&As).

· Over 120,376 individuals with disabilities (including developmental disabilities) received clinical services either directly at a UAP or a UAP-sponsored community program.

26

2