READINGS
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Serving Adults with Cognitive Developmental Disabilitiesby Darrel Christenson The Problem Centers for independent living (CILs) are often criticized for not adequately serving individuals with cognitive developmental disabilities even though CILs are required to provide services on a cross-disability basis. This is understandable when considering the traditional method of service delivery for this population. Sheltered workshops and group homes, characteristic of developmental disabilities services, are contrary to the consumer-controlled, community-integration philosophy of CILs. Separate funding streams add to the problem. Although services for the developmental disabilities population in Arizona are funded with millions of federal and state dollars annually, approximately 90% of consumers with cognitive limitations receive only emergency services. They are not eligible for Title XIX funding unless they have a profound or serious cognitive limitation. Those consumers whose cognitive disability is considered moderate or mild receive no services unless in a crisis situation (e.g., homeless or sexually/financially exploited). Arizona’s Division of Developmental Disabilities identified more than 3,000 consumers in this category statewide. Isolation, poverty, poor health and worse are often the conditions under which these consumers live. Consumer control, self-determination and community participation are the exceptions. The Alliance Arizona Bridge to Independent Living (ABIL) is a CIL that serves all of Central Arizona with a three-county rural and urban population of more than 3 million people, 62% of the state’s total population. Continued massive growth during the past decade with no increase in Part C funding (other than cost of living adjustments) and no state funding at all for independent living services caused significant unserved/underserved conditions within our service area. ABIL’s board of directors approved a strategic plan based heavily upon collaboration with other community-based organizations. Collaboration proved difficult when attempting to ensure partnerships with organizations that embrace the independent living philosophy. A natural partnership with our local Parent Training and Information Center (PTI) established under Title VI of the Individuals with Disabilities Education Act (IDEA) developed. Then called Pilot Parent Partnerships, our PTI became an ally due to its commitment to a then emerging movement called “self-determination.” We discovered that the philosophy we promoted for adults with disabilities, Pilot Parents promoted for families with children with disabilities. Concurrent with the partnership established between our CIL and PTI, a new director of our Division of Developmental Disabilities was hired from another state. He brought with him a plan to change the character of the Division to embrace the concepts of self-determination and inclusion. Pilot Parents, already a developmental disabilities provider, invited ABIL’s executive director to join a Division of Developmental Disabilities task force. The group’s task included evaluating existing service taxonomies to determine whether they adequately achieved the “self-sufficiency” embodied within their service description language. Were there other services that might increase family/consumer participation in decision making? At each meeting, ABIL’s director introduced peer mentoring as a service that could be interwoven with developmental disabilities services as a means of offering role models in a “natural supports” (i.e. real world) environment. At first, blank stares were the response; clearly, this was a foreign concept to those participating in the group. Over time, however, with repeated discussion and support from the trusted PTI, the group began to understand the concept and accept its potential. The group leader, a manager within the Division, asked the CIL director to write a proposal to do such a program. Once done, however, the proposal could not be funded; it did not fit within the funding parameters of allowable developmental disabilities services. Regardless, the alliance had been formed. Trust and commitment had been established between the CIL and the Division - a major step forward. The Plan: Community Living Options The original task force disbanded. The Division of Developmental Disabilities manager, however, continued to contemplate the peer mentoring potential. He paired up with an exceptionally passionate, dedicated case manager who had an idea called “Community Living Options.” They discussed the concept with other community partners: the Volunteer Center, Arizona State University School of Social Work and, of course, ABIL. Division staff believed that “drop-in” counseling and recreation centers and “foster care homes” would be the primary flavor of the project. The CIL staff, however, dreamed of consumers living in their own homes or apartments, perhaps with roommates of their choosing, and friends and family visiting regularly. ABIL staff envisioned the consumers going off to competitive, community-based jobs that paid real wages with benefits and employers who provided natural on-the-job supports. The resulting project design includes all of these options, just like real life! The Division lined up a cadre of interns to train as the first mentors. The CIL identified existing peer mentors within the CIL for the project. The CIL proposed the project to the Valley of the Sun United Way. United Way funded the project with $22,000 in start-up funds. This allowed for a half-time program coordinator. The CIL committed existing Title XX funds (Rehab Instructional Services and Counseling) for the other half of the coordinator’s salary, management and support. The use of multiple funding sources for the project creates record keeping hassles but supports the project appropriately. What Services are Provided? Duties and Roles of ABIL and Division of Developmental Disabilities Staff and Interns I. Help individuals with emergency services II. Help individuals with employment opportunities III. Help develop peer mentor relationships IV. Help individuals in community network relationships V. Help Developmental Disabilities Support Coordinators VI. Other The Success The Community Living Options Project started in September 1998. The results are far beyond anything we thought possible in many respects. The project dovetails with ABIL’s Project With Industry (PWI) grant by referring Community Living Options consumers to the PWI to explore employment opportunities. To date, six consumers are gainfully employed in competitive, community-based jobs. Eight Arizona State University interns volunteered more than 4,400 hours of time to the project, reducing our per hour cost to $6.42! The experience with the Community Living Options project provides data for ABIL’s advocacy unit to promote inclusion and self-determination in the Developmental disabilities community in general. Major dialog between the People First self-advocates, CILs statewide, the statewide independent living council (SILC), Parents/PTI, Arizona Rehab Services Administration (VR), the legislature and traditional developmental disabilities service providers is occurring, sometimes tense and confrontational, but necessary to achieve more and better options for consumers with developmental disabilities and their families. The Outcomes to Date
Overall, more that 400 consumers have been contacted to participate in the Community Living Options program one way or another. Some family members have expressed interest in volunteering in the program, helping with transportation, activities, etc. A Story M.S. is a very happy young man right now. It wasn’t always so. He was living with an older sister who took his money and sometimes made him sleep outside. He would hang out all night drinking and sleeping in alleys. Upon hearing about the Community Living Options program, his Support Coordinator referred him to the program, thinking it was a long shot but worth a try. He moved in with another sister and brother who agreed to work with the CLO Program Coordinator to help M.S. improve his situation. He had no identification whatsoever. He now has a Social Security card, Arizona identification card, and a new birth certificate. His brother is his payee. The brother helped M.S. open a savings account. M.S. purchased new clothes and shoes. He volunteers at a church two days a week putting food boxes together. He doesn’t drink anymore. He’s trying to quit smoking. He has a job at Bank One Ballpark which he loves. He developed a friendship with a co-worker who helps look out for M.S. In return, M.S. translates Spanish for his friend as well as other co-workers. His next goal is to move into his own apartment. For more information on the Community Living Options program, contact: Darrel Christenson ©2000 ILRU |
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| This document may be reproduced for noncommercial use without prior permission if the author and ILRU are cited. The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field. ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred. ©2005 ILRU Program, All rights
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