# 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;

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-   To identify areas of common interest ("crosscutting" issues);

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-   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;

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-   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;

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-   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.

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-   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.

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-   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.

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-   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.

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-   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

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-   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](http://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 21^st^ 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;

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-   The sharing of information about outreach best practices;

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-   Project information is featured on the HSRI web site
    ([www.hsri.org](http://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).

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

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

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

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

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

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

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-   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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