DisAbility Rights Idaho, Comments on proposal for the Partnerships for Innovation, Inclusion and Independence (PIII)
The PIII proposal is one of those concepts that seems like a good idea to people in Washington D.C. examining the various laws and grants, but is obviously a very bad idea to people with disabilities in the states where the councils actually do their work. I do not believe that there is any way to combine the three councils without diminishing their effectiveness. I do not believe that a single council can have effective representation from all of the affected constituencies.
Combining the Councils will destroy their focus and dilute disability representation.
All three councils are concerned with some type of disability, all three councils are required to have some representation of people with disabilities or family members. All three councils have some role in recommending state policies concerning issues involving people with disabilities. Nothing else is the same. Even in these three areas, each council’s mission and makeup are very different. In theory, the councils’ activities could overlap. In practice they never duplicate but sometimes collaborate. In Idaho the DD Council has interacted with the State Independent Living Council (SILC) for thirty five years, complimenting each other’s activities without duplicating or overlapping.
- The State Independent Living Council (SILC) and Centers for Independent Living (CIL) are cross disability organizations, but they are exclusively focused on independent living in the community. The SILC’s activities are focused on adults and transition age youth, soon to enter adulthood. They are NOT directly concerned with conditions in facilities, early childhood services, family support, K-12 education (except for transition), abuse or neglect in facilities, diagnosis or treatment. By concentrating on independent living, the SILC can work on a wide variety of disabilities, although it is a challenge to maintain a board which fairly represents this variety.
- The DD Council is focused on people whose disability is severe and occurs at birth or during the developmental period, but mostly addresses people with Intellectual Disability, Autism Spectrum Disorders, and Cerebral Palsy. By keeping a narrower focus in terms of disability, DD Councils can address issues across the lifespan including prevention, infant and toddler, preschool, Education, medical treatment, abuse and neglect in homes and facilities, specialized skill development, job training and placement, benefits policies, rights protections, and community integration. By having a narrower disability focus, DD Councils can assure that they have representation for the variety of disabilities, different ages and issues, and can include parents of children with DD.
- Congress established the Traumatic Brain Injury (TBI) Programs for the specific reason that the unique problems of people with TBI were not being addressed by the various disability related programs and the medical and rehabilitation establishment. People with TBI found themselves without appropriate treatment, rehabilitation services, education or medical treatment. As the incidence of TBI increased due to combat injuries, and sports injuries, this lack of specialized services was exacerbated. Recombining the TBI program into pre-existing programs would defeat the purpose of the legislation.
There is no way that these councils can be efficiently combined into a single entity. To insure adequate representation of all of the different disability types, ages, and geographic and cultural groups would require a huge and unwieldy council. Maintaining a focus on all of the issues addressed by each of the councils would dilute the targeted efforts and make them less efficient and less effective.
PIII would dismantle a successful program of State and Local innovation, often leveraging private resources to create local solutions.
These Councils have been productive laboratories for state innovation. Congress designed these programs to be focused on specific priorities, but to leave the implementation to the states to find innovative and local solutions. Within each council’s mission they are required to have consumer controlled processes for developing plans and projects. These projects in Idaho have often focused on developing and connecting people with disabilities to local, private or charitable resources to help people integrate more fully into community life, rather than promoting dependence on federal programs. For over 30 years these unique programs have been successful laboratories of innovation, responsive to their constituent communities. In those three plus decades, they have developed cooperative arrangements, collaborating when appropriate, but never duplicating services. In Idaho at least, this process is effective and efficient.
Each Council is an essential part of a State Network.
SILCs have a unique relationship with the state’s Centers for Independent Living (CIL). CILS receive guidance, public policy assistance, coordination and planning assistance from the SILC. CILs are the main focus of the SILC and this very beneficial collaboration could not be sustained at the same level with a broader, less focused, combined council. The SILC also provides a statewide point of contact for broader collaboration with Protection and Advocacy services, and the other two councils.
DD Councils are intimately associated with The University Centers for Excellence in DD (UCEDD), and with the Protection and Advocacy System (P&A). DisAbility Rights Idaho is the P&A system for Idaho. The UCEDD, through research training and dissemination helps to define evidence based “best practices” for people with DD. DD Councils provide planning coordination and public policy guidance to help the state adopt and implement those practices. P&As, in addition to protecting the rights of people with developmental disabilities, monitor the success of those practices and policies and provide important feedback and legal analysis to the Council and the UCEDD (See also NDRN”s comments on this issue, with which we concur). These three entities are required to collaborate on five or more priority issues every year.
TBIACs are integrated with the state TBI program and the Protection and Advocacy for people with TBI (PATBI). This combination of programs provides for collaborative planning and priority selection to help drive state level solutions to the lack of specialized services and treatment for people with TBI.
A combined council could not hope to achieve the level of joint planning and collaboration on the three areas of focus. This would make the process of planning and priority setting cumbersome at best and impractical in general. The focus which Congress placed on particular populations, like TBI, and on particular goals, like independent living, would surely be lost.
Reduced Funding will Reduce Effectiveness.
Since the merger of the councils will not increase efficiency, reduced resources will simply reduce effectiveness. The drastic reduction in overall funding will create destructive competition for shrinking and inadequate resources by diverse and deserving groups of people with disabilities. Making a single council choose between addressing abuse of people with DD in institutions, and finding transportation resources to enable people with disabilities to gain employment, or making web based services accessible for blind people, or improving access to mental health services for people with persistent mental illness, is not productive. These programs are in need of more funding, not less. (See also the comments of NDRN).
Conclusion
The PIII proposal has superficial appeal to people in Washington D.C. reviewing statutes and bureaucracies, but it discounts the collective experience of people with disabilities in the states where these programs have succeeded, and over thirty years, have found effective ways to achieve the Congressional purpose of each program, individually and collaboratively. PIII would destroy the focus of each program and dilute their mission across many dissimilar disabilities and goals. It would make adequate representation of different disabilities, geographic areas, and cultural concerns in a single council impossible. It would disrupt the three networks which improve the effectiveness of the councils. Reduced funding will reduce effectiveness.