AMERICAN ASSOCIATION OF UNIVERSITY AFFILIATED PROGRAMS – AAUAP
HOUSE SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION AND RELATED AGENCIES APPROPRIATIONS
David Mank, Ph.D.
Indiana Institute On Disability & Community
Department of Curriculum & Instruction
Eric Feinberg, Student
Mrs. Beryl Feinberg, Parent
2358 Rayburn House Office Building
MARCH 7, 2000
The UAP network is authorized through the Developmental Disabilities Assistance and Bill of Rights Act - most recently PL 104-183. There are 61 UAPs nationwide, housed in university settings - at least one in every state and territory. The UAPs help make community participation possible for people with disabilities through research and training, bringing advances in science into everyday practices across the states and country. Our system is a unique collaborative network with strong research, training and technical assistance emphasis on collaborative, interdisciplinary, cross age span activities. We make a tremendous difference in the lives of individuals with developmental disabilities and their families.
Each UAP competes for core funding every five years. Our "core funding" is a "line item" under the Administration on Developmental Disabilities appropriation. The current appropriation is $200,000 for each UAP – money used to provide the infrastructure and operational base from which programmatic support is sought from additional sources - local, state, federal grants and contracts, private foundations, and fees for services, as well as the host university. Authorized at $250,000 per UAP, the appropriation has remained at $200,000 per UAP since 1987 – there has been no provision for the rise in the cost of living over these years. In my testimony I will make a strong case for the value of UAPs and for increasing funding for them - specifically through the ADD core grant. But first, let me tell you why we are so proud of our system.
Background. With the passage of the Developmental Disabilities Assistance and Bill of Rights Act, the 88th Congress committed the Federal government to the creation of a three pronged system of supports, services and rights protections for people, many of whom had been warehoused in large institutions, many subject to inhumane conditions. The Act was a powerful statement, welcoming individuals with developmental disabilities into their communities, and the UAPs have played a critical role in making that welcome work. The UAP was to translate the best of what science has to offer through interdisciplinary, research, training activities and service demonstration efforts. Since the inception, we have been successfully training professionals for leadership positions and direct care workers for community services; working to ensure that people with developmental disabilities have access to the services and supports they need; conducting research and validating emerging state of the art practices; providing technical assistance; and, disseminating information to individuals with disabilities, families, public and private agencies, and policy makers. We work in concert with our sister systems, the Developmental Disabilities Councils and the Protection and Advocacy Systems. Since you will hear directly from them about the very impressive and important work that they do, I will say only that this three pronged approach to developmental disabilities has a very successful history and is still going strong.
What Congress put into place with the Developmental Disabilities Act continues to meet a significant societal need in the beginning of the twenty-first century - as new science, policies and attitudes evolve for including and supporting individuals with disabilities in the main stream of American Society. The Country has come a long way in building community systems, but we are far from done. Thanks to the leadership of the U.S. Congress with the passage of the ADA, IDEA, the Technology Related Assistance for Individuals with Disabilities Act, the most recent Ticket to Work and Work Incentives Improvement Act, and other broad reaching legislation, people with disabilities have made great strides toward independence. However, the challenge of independence for individuals who present a broad array of unique and intense functional challenges requires continued, creative systems design and change. We view ourselves as partners with federal, state and local leaders; we bridge the gap between their vision and full implementation.
The UAP network started out small. In the early years there were only a limited number in university settings across the country. With each reauthorization of this Act, Congress has reaffirmed our nation’s commitment to independence, productivity and community inclusion and consistently recognized the importance of a UAP in each state. With gradual increases in the numbers of UAP sites in each reauthorization and appropriation, and with your support our long awaited and hard-earned goal of completing the UAP network - with at least one UAP in every state and territory has been finally realized. With so many opportunities for work across multiple states, it is now time to fully realize the potential of this national resource for individuals with disabilities and their families and the communities in which they live.
State and Local Impact. UAPs are true examples of state-federal partnerships. More than 1/4 of the UAP funds come from the states and local communities. The federal funds flowing into the state through UAP grants and contracts benefit the state as well as the nation in developing new cutting edge approaches. As the nation continues to move in the direction of increased state/local decision-making, the UAP will be more important than ever. UAPs are now assisting in TANF and welfare-to-work programs and working to ensure that the CHIP health services for children benefit children with developmental disabilities. The significance of the UAP in every state will continue to increase as federal policies need to be translated into local goals and procedures, trained personnel, and service systems designed to efficiently meet the needs of individuals with developmental disabilities and their families.
Each UAP is housed in a university, but by mandate must translate the best scientifically validated practices into broad-based, high quality, community practices. This is the unique contribution of the UAPs. Best practice disability initiatives such as community-based services, family-centered supports, consumer oriented planning, supported employment and community living, capacity building and systems change, interdisciplinary training, school inclusion, community integration, self-determination, all reflect top quality outcomes for individuals with disabilities and their families. The implementation of these effective practices is the return on the investment in the UAP network.
Preparing Personnel for the Future: Preservice Training. A successful, quality life in the community for individuals with developmental disabilities begins with well-trained professionals. UAPs have the unique ability to deliver high quality local and statewide personnel training in a collaborative, coordinated fashion and to address issues that are 1) lifespan appropriate from early intervention to aging, 2) interdisciplinary, and 3) across health, education, and social service systems. UAP trainees – over 5000 long term and 60,000 short term trainees each year receive the most up-to-date scientific information, practice their skills under the mentorship of experienced faculty from a range of academic and clinical departments, and work in real world community and family settings. Graduates from UAP programs are some of the best prepared professionals in the disability field and can be found in leadership positions throughout the country.
Direct Services and Supports Using Community Training and Technical Assistance: UAPs provide quality, exemplary services directly to families and individuals. These include a broad array of services - based on local needs of individuals and their families, including but not limited to personal assistance, clinical, health, prevention, education, and vocational services, direct service staff training, diagnostic services, supported employment, and person centered planning.
Using their core funding as an instrument of creation, the IL UAP has built the largest community-based assistive technology program in the United States. I have sitting with me Eric Feinberg, a student at Glenbrook North High School in Chicago and his mom, Beryl Feinberg, who wanted to be here this morning as a demonstration of the fine work of the Assistive Technology Unit in Chicago. Last year this center served over 700 individuals with disabilities in the greater Chicago area, with a program that includes 7 mobile units and a fully equipped rehabilitation engineering laboratory. Eric is among those 700 folks served. He has received highly specialized customized equipment designed by the center’s rehabilitation engineers that aids in positioning and pressure relief management. Eric has also received communication assistance from speech language pathologists and occupational therapists. Mrs. Feinberg and Eric will be happy to answer any questions you may have about what these supports have allowed him to accomplish.
In Oklahoma, families with children with significant special health care challenges are remaining intact thanks to the UAP Keeping Families Together project designed to prevent out-of-home placements for children with special health care needs. Over 100 families have been served, including a family in which both parents have disabilities who were able to bring their child home from foster care. The OK UAP also provides training and practicum to special education teachers in autism and other low incidence disabilities. Over 2000 teachers have been trained and report success in using the techniques they learned.
The UAP system is flexible and able to respond to the changing needs of the community. A gaping hole currently exists in training of direct staff in Washington DC and other locals around the country, as evidenced by recent newspaper articles. Many UAPs are now working to fill that gap.
Forty-one percent of the direct care staff in Kansas had been trained with a curriculum created by the KS UAP ...The Minnesota UAP has developed materials that have been used to effectively train over 30,000 direct support staff on important topics related to health and safety, community inclusion, natural supports, rights and respectful interactions. The UAP also developed a statewide credentialing program for direct support staff through the community and technical colleges in Minnesota. ... Direct Support Professionals in Ohio have access to self-instructional direct support professional training through Ohio UAP developed instructional video training materials. They can learn at their own pace and convenience, and at no cost. ... The Parent Case Management for People of Color project of the Minnesota UAP has provided consultation, support and training to over 150 African American and American Indian families seeking to become more involved in care management of services for their family member with a disability.
For many UAPs, it is the technical assistance, as opposed to direct services, that has had the greatest impact on the ability of state and local service delivery systems to adequately meet the needs of people with developmental disabilities. Much of the training material for such new initiatives has been developed in the UAPs and becomes available to service agencies nationwide.
The UAP at Children's Hospital, Boston, enhances the capacity of local schools to include children with chronic special health care needs in their local public school classes. The materials developed to train school nurses in Massachusetts are now used across the country.
The unique feature of the UAP is the synergistic affect of combining research, training AND direct services, providing the opportunity for invaluable interactions between those who investigate effectiveness, those who train service providers and those who actually put the strategies and practices into use.
The Montana UAP trains adult developmental disability agencies on the use of Social Security Work Incentives. This UAP has expanded the use of supported employment into remote communities of the west; collaborates with agencies serving Native Americans with disabilities in creating employment opportunities, and is spearheading efforts to use self-employment for individuals with developmental disabilities.
Research and Dissemination of Information: Findings from UAP research as well as research conducted at other universities is used to better understand and guide policy and practice at the local, state, and federal agency level and results in increased effectiveness and speeds the conversion of research to best practices implementation. UAPs are collecting information and measuring outcomes relative to our Nation’s success at providing care for citizens with developmental disabilities. Governors and State Legislators use the data collected as a guide to evaluate plan and implement policy
The State of the States in Developmental Disabilities, authored by the IL UAP in Chicago, provides information to governors and state legislators on how state dollars are spent for care and services for persons with developmental disabilities and provides historical trends on those expenditures.
UAPs also use cutting edge technology to provide individuals with disabilities and their families access to new and emerging information.
The Family Village project at the UAP in Wisconsin is an Internet system designed to help families with disabilities network with other families around the world. In addition, the system provides families validated disability specific information and organized listings of existing health and community services.
Leading Through Collaboration. Collaboration occurs at multiple levels. UAPs work locally and nationally with other programs to ensure that people have access to a full spectrum of rights and care. UAPs also collaborate with federal agencies to bring developmental disabilities expertise to their ongoing work.
Together with the U.S. Bureau of the Census, the PA UAP is working on an outreach project to raise the awareness of the importance fully participation in Census 2000 for people with disabilities. ... The UAP in Westchester County, NY has a long-term collaborative relationship with the County Department of Social Services to address child welfare issues by assisting the department to meet new State foster home health care standards; working with children, biological and foster families, case workers and family court judges to improve permanency outcomes for children; and providing training, support and information to foster families wishing to adopt foster children in their care.
Emerging trends and issues: Our potential is not limited to the current statutory and/or programmatic structure. UAPs continually look beyond what we know to seek creative solutions to emerging issues.
(1) Under managed care systems children with disabilities are often denied critical therapy services, prescription drugs, and interdisciplinary evaluations. One child in New Hampshire who was diagnosed with a rare heart defect that required surgical repair was denied a referral to Children's Hospital in Boston, only one and a half hours away. Surgeons in NH had little experience with the type of repair and parents were forced to fiercely advocate. The NH UAP worked to educate families, insurers, and state policy makers responsible for contract development to make sure children and adults get appropriate health care services.
(2) State welfare reform initiatives in states have called upon UAP personnel to assist state and community agencies to support those individuals who remain on welfare or are having difficulty maintaining self-sufficiency. An Office of the Secretary for Policy and Planning report estimates that 40% of individuals on welfare have some form of disability. As states move people off welfare, individuals who have "multibarriers" continue to challenge the employers and service providers. The Michigan UAP is examining the impact of welfare reform on mothers of children with disabilities. Having identified barriers such as inadequate and inaccessible childcare, lack of transportation and low pay, they are working with the State legislators to translate the research results into a pilot program specifically targeted on these issues.
(3) UAPs are uniquely positioned to transfer their experiences with developing community support systems to the elderly system, which in most states lacks supports, personnel and services. UAPs are involved with HCFA's initiative to help those who have disabilities and/or are elderly to leave nursing homes and return to their own homes with the proper supports. At the Arkansas UAP Aging With Independence is a collaborative project between the UAP and the Area Agency on Aging. The project provides assistive devices and minor housing modifications in a 7 county area to seniors with sensory and mobility problems, facilitating independence and allowing them to "age in place."
(4) UAP's have been essential in helping states and communities address growing concerns about neglected and at-risk children. UAPs in VA, OR, and NH are working with Child Protective Services, helping them support parents with disabilities who have children in the child neglect system. It is estimated that between 30 and 40% of these parents have disabilities. A California UAP works to decrease alcohol use by low income, ethnically diverse women enrolled in the LA County WIC program.
(5) There is a growing need for well-trained professionals to meet challenges of violence, drug abuse, teen pregnancy and poverty for individuals with developmental disabilities. The PA UAP is working extensively with the criminal justice system seeking "equal justice" for people with disabilities through training, technical assistance and policy-relevant research. The UAP is playing an important role in bringing together the disability service and advocacy system and the criminal justice systems.
(6) A growing number of children in public schools are being medicated for hyperactivity disorders or mental health issues. UAPs are helping universities develop more relevant teacher preparation programs, working with community pediatricians to inform them as to best practices in behavioral supports, and supporting families in decision-making.
(7) UAPs are very involved in the movement to advance individualized supports and family support. UAPs are working with the Administration on Children and Families/Children’s Bureau to impact special needs adoption. With the appropriate training for adoption personnel and potential parents, more children with special needs will be adopted by loving families rather than living in foster homes. ... We also work to prevent the need for adoption. The PA UAP’s Project Star is working closely with parents who give birth to a child with a developmental disability, providing supports and services for the family in an effort to help families feel comfortable in keeping their child. ... The Texas UAP conducts training on developing individual services and supports, with a special emphasis on self-directed, person-centered planning.
(8)UAPs have played a vital role in pushing the envelope for educational services since our inception. Never are we more important than today, as our nation struggles to improve educational outcomes for all students. The approach to generic education reform has a direct and sometimes dramatic impact on students with disabilities. UAPs are at the educational reform table in many states. Kentucky's Alternate Portfolio Assessment, developed and implemented through the KY-UAP for students with moderate and severe disabilities, has resulted in Kentucky having the first fully inclusive, state-wide educational assessment and accountability system in the nation. The Alternate Portfolio has served as the national prototype for the new language in the 1997 Individuals with Disabilities Education Act Amendments requiring all states to have alternate assessment and accountability systems in place by July 1, 2000. To insure that policy makers and practitioners can address the methodological and the technical/content issues that must be addressed in large-scale alternate assessments, UAP staff have published a wide range of research articles and book chapters in national publications, and made numerous presentations throughout the country. UAP staff is currently working directly and onsite with the following states in developing or implementing their federally-mandated alternate educational assessments for students with disabilities: New York, Kentucky, Massachusetts, Tennessee, Washington state, Illinois, Rhode Island, South Carolina, New Hampshire, and Virginia. The KY UAP also directs two significant components of our State Improvement Grant for students with disabilities under IDEA, including transition from school to work and to post-secondary education, and the development of a statewide training program for Kentucky’s paraprofessionals serving children and youth with disabilities. In this capacity, they work with virtually every school district in the state to assist them in improving educational outcomes for students with disabilities.
(9) And, finally, we are looking forward to fully participating in ethical decisions relative to genetic testing and new uses of biomedical and other technologies on behalf of persons with disabilities.
FY 2001 Funding Request. Mr. Chairman, let me close with a discussion about the finances of UAPS. Our dilemma can be summed up in a short paraphrase of Winston Churchill "never have so many done so much with so little." We are struggling. Our outcomes have been impressive, the lives that have permanently changed as a result of our services are many, our programs are strong, but we are losing ground fast. For thirteen years the UAPs funding has been frozen at a core award of $200,000 per site. Because of inflation, the buying power of the $200,000 is far less than it was in 1987. If we apply the CPI over these years that $200,00 is now worth $141,312 - That’s over a 35% reduction over the last 13 years, yet the expectations and roles for the UAPs have only increased over this same time. Without an infusion of additional core funds, the UAP network is in danger of deteriorating at a time when it is sorely needed to continue the drive of people with disabilities toward increased independence, productivity and integration into US society.
The bottom line is "We need additional financial resources". I recognize the dilemma that you are in without authorizing legislation, and we are working very hard to facilitate rapid movement of the reauthorization of the DD Act through the House. Our hope is the major agreements carefully negotiated in S. 1809 will make this process easier in the House. S. 1809 would increase the core authority for each UAP from $200,000 to $500,000. UAPs desperately need these resources to catch up and keep pace with the growing demands on their services. Now that we have finally completed our network - now that we are in each state, the most cost efficient use of tax dollars is to fully utilize this national network on the challenges facing people with developmental disabilities and their families in their communities throughout the country.
Absent an authority to raise the core funding to a level that would accommodate the $500,000 per program provided for in S. 1809, we ask at a minimum that the appropriation for the next fiscal year reach the level of the last authority which would provide $250,000 per UAP. The American Association of University Affiliated Programs for Persons with Developmental Disabilities (AAUAP) therefore recommends that $21 million be provided for the UAP system for FY 2001. Should the reauthorization occur in time for this appropriation process, we strongly recommend the increase an increase to $31 million to provide $500,000 in core funding for each UAP. We also strongly endorse funding levels requested by our sister systems: the Developmental Disability Councils and the Protection and Advocacy Systems.
WitnessDavid Mank, Ph.D.
Local Washington DC ContactsGeorge Jesien, Ph.D.
Director of Governmental Relations
American Association Of University Affiliated Programs (AAUAP)
8630 Fenton Street, Suite 410
Silver Spring, MD 20910
The American Association of University Affiliated Programs for Persons with Developmental Disabilities (AAUAP)
The American Association of University Affiliated Programs for Persons with Developmental Disabilities (AAUAP) is the central office representing the University Affiliated Programs (UAPs) and is their representative to the federal government and constituent organizations and agencies. The mission of AAUAP is to nurture, support, and assist member agencies in their endeavor to enhance the quality of life for persons with developmental disabilities through interdisciplinary training, exemplary service, technical assistance, dissemination of information, and research. The AAUAP represents both the individual and collective needs and interests of its member programs through policy initiatives, national information and reporting system, quality enhancement, collaboration and networking, consumer involvement and education and training.