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 Summary								3-6	

Chapter I	Developmental Disabilities Council							
		and Protection and Advocacy Systems				       7-21	

Chapter II	University Affiliated Programs 				                 22-28                 

Chapter III	Projects of National Significance			                29-34

Chapter IV	Conclusion							        35
  
Chapter V	Program Results							        36

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.

  






 



  
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