Much of the work which goes on at CIL and the other independent living centers is aimed at encouraging people to believe that they are capable of solving their own problems, and then providing the services necessary for them to realize their goals. We provide persons with a wide range of services-which the committee will learn about in greater detail from others speakers-to insure that disabled people learn the skills necessary for independent living. We also provide information which enables disabled people to understand the system and work toward assertiveness and selfadvocacy. When an individual is in need of advocacy assistance in informal or formal settings, we will provide them with an individual who will advocate with them. It is important to us that services are provided which allow an inidvidual to make progress at their own pace. We have no closure requirements. In fact, it is fully understood that many of our clients will need our services indefinitely in order to remain independent. Additionally, our primary objective is not employment. We believe that only after an individual is in charge of their own environment can employment become a realistic goal. We have seen that when a client's daily life is operating smoothly and in their own control, they oftentimes become interested in seeking training for employment. We encourage this. The programs at CIL and all the other ILP's have been created to insure that those individuals who wish to work are able to exercise that option. CIL and other ILP's provide direct services to clients, but we also play a very active role within our communities to encourage the removal of barriers. We work closely with city, county, State and Federal representatives on legislation; we work with local coalitions; we work cooperatively with a variety of agencies to give them information on issues concerning disabilities; and we are actively involved in the establishment of local and State coalitions of disabled individuals. None of the ILP's in California have yet achieved the optimum level of service delivery. None of our programs are addressing the needs of all different groups of disabled people. For example, CIL provides services to people who are physically disabled, deaf, blind and elderly. We provide limited services to persons who are mentally retarded, and limited services to children and their families. This is primarily because of the difficulty of obtaining sufficient funds to maintain all services. We believe, however, that we are fully capable of serving all disability groups. Further, we believe that it is in the best interest of disabled individuals to insure that our centers are capable of providing services to all persons with disabilities. CIL and all other ILP programs believe that a comprehensive approach to disability must evolve. Services must be available from onset of disability until the disability either no longer exists or until the person dies. Additionally, it is important to provide services to the family and others playing a significant role in the life of the disabled individual. Having reread Public Law 93-112, the Rehabilitation Act of 1973, the law seems to be-I am not a legislator-permissive enough to allow RSA to sanction many of the services which are currently provided by ILP's. However, it appears that RSA is utilizing a narrow interpretation of the law. For the record, I wish to submit a copy of a memo dated September 2, 1977, which seems to very narrowly define the services that can be provided under I and E programs funded by RSA. It seems to me that the Congress intended to allow services to disabled individuals to be broadly defined to guarantee opportunities for the greatest number of persons to enter the world of work. The conclusion of this statement will be concerned with the changes that we believe need to be enacted in legislation in order to enable disabled individuals to achieve independence. One: A program of supportive services similar to the in-home supportive services and MediCal programs in California must be developed on a national level. However, this program must go beyond what currently exists in California. These services must be available to all persons who are disabled and who need the services irrespective of age or economic status. We believe that this is, in fact, a cost-effective program and the most humane way to treat America's disabled citizens. Warehousing of disabled people is both costly and cruel. Two: Independent living services, such as peer counseling, family counseling, blind services, deaf services, equipment maintenance, legal, education, and financial advocacy, housing assistance, services for the mentally retarded and families, attendant referral, job placement, et cetera, need to be provided through community-based independent living programs, staffed significantly by persons who themselves are disabled. These programs should not be considered to be governmental agencies but should be allowed to establish ourselves as nonprofit corporations. Funds need to be appropriated to establish these programs in all States. These programs should not be considered to be "demonstration" programs. All programs are, in reality, demonstrations. We have proven in California and in other States that ILP's are, in fact, effective. Disabled people believe that these service centers are valuable and are attempting to establish programs across the country. We believe that it costs approximately $200,000 per year to run small independent living program. One might consider funding programs in States according to DR districts defined by the States. Total funding for these programs, we don't believe needs to be provided by the department of rehabilitation. Initially, we feel $200,000 needs to be provided by this agency. Hopefully, what could occur in other communities is what has occurred here in Berkeley and other communities in California is that funding provided by other governmental programs at the city, county and State level. Three: The current Federal structure prevents adequate addressing of the needs of disabled individuals. An office for independent living needs to be established whose executive officer reports directly to the President. This office should have authority over all agencies and programs that affect the lives of disabled individuals. This office should also establish an ongoing review committee that would oversee the activities of the above-mentioned agencies and programs, make recommendations regarding needed legislative changes and review all proposed legislation. This committee should be comprised of representatives of all the above-mentioned agencies and programs and equally represented by persons from national organizations of disabled people. I hope that due consideration will be given to these recommendations. On behalf of myself and the other independent living programs, we look forward to working with you in the future on the development of meaningful legislation. We recognize that we are not considered or have been considered to truly be a part of the traditional rehabilitation family. We believe that this is in part true because we are not necessarily viewed as professionals. However, we believe that we speak for the majority of disabled individuals in this country who are desperately trying to achieve independence. Thank you for coming to California, and we hope to see you again here soon. [Material submitted by Ms. Heumann follows:] SUBJECT: Fall Meeting Agenda Item on Community Independent Living Centers As Dr. Galvin indicated in his August 22 memorandum to you, the We are doing our best to have items 1, 2, and 3 completed so they SEP 1 2 1977 The assistance and cooperation of the Committee is greatly appreciated. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE DRAFT 8-25-77 SUBJECT: PURPOSE: CONTENT: PROGRAM INSTRUCTION STATE REHABILITATION AGENCIES (GENERAL) Community Independent Living Centers (CILs) During the last few years, there has been a tremendous and placement. Each of the activities and services meet a real 121. Community Independent Living Centers (CILs) are an important service resource emerging to help the severely handicapped achieve maximum adjustment in tx their community and to life in general. These resources can often have a broader goal |