The purpose of Training Toward Self-Reliance, Inc. (TTSR) is "to increase opportunities for people with disabilities to lead good lives in places of their own, strengthen their communities, and enjoy a genuine sense of self-worth." TTSR was founded in 1982 to support people with developmental disabilities in the Sacramento area, within the 10-county Alta California Regional Center district.
Over time, TTSR staff have developed particular expertise in supporting adults with developmental disabilities to manage their own personal assistance services (PAS), supporting parents who themselves have disabilities, and supporting people with disabilities whose lives have been substantially affected by social problems associated with poverty, substance abuse, and interpersonal turmoil.
Based on the experiences of agency staff and the people they support, there are a number of lessons that can be drawn related to three critical service system issues: 1) lack of support for people with developmental disabilities to manage their own personal assistance services; 2) lack of support for parents with developmental disabilities to raise their children; and 3) service system control of people.
In California, people with developmental disabilities are eligible to receive PAS. However, often, there is no support available for them in the management of these services. TTSR has devoted significant effort to support people to mange their PAS. Following are some lessons based on their experience.
There is a significant degree of mistreatment of people with developmental disabilities who use PAS. In the experience of staff at TTSR, mistreatment is a big issue. Support from TTSR has helped to reduce or eliminate some of the problems for the people they support. TTSR staff strongly feel that the risks should not be used as an excuse to take away autonomy and control, but rather, that people should receive support to deal with the problems.
We have to work to understand how to sustain the autonomy aspect and still acknowledge that there are risks involved when you hire somebody to come into your home; that's really got to be confronted and managed, rather than just swept under the rug.
A broad range of supports should be offered to assist people with developmental disabilities to manage PAS. The agency began involvement in PAS management support approximately 10 years ago. After a few years, they wrote a grant proposal in order to increase their understanding of key issues:
We were trying to develop more capacity to head problems off--not just run after problems all the time. Also, not to assume that any package of support is going to guarantee prevention of problems with assistants. What we were really trying to do is substantially reduce the odds of problems. And it has really worked well.
TTSR now operates a course on PAS management at a local community college. In addition, staff assist people with such things as recruitment and supervision of assistants; development of back-up support plans; acquisition of technological adaptations; and the establishment of job descriptions and work schedules.
It is important to be prepared to offer support to people in negotiating relationships with assistants. As one staff member described, "Friendships and complications do evolve. A lot of the people we see are so lonely, that fulfilling that loneliness is what they want in a person, that's one item on their job description." TTSR staff don't assume that friendships will evolve; they take the approach that this is an employment relationship. If and when a personal relationship does arise, however, they will assist the person in negotiating it, if desired.
TTSR has been very cautious and hesitant about becoming an employer of assistants. Currently, money for employment of assistants for 10 individuals is funneled through TTSR. This arrangement--part of their supported living services--has enabled these individuals to receive a higher level of support than they would otherwise be able to obtain. But, on the whole, the agency has opted to co-manage assistants only in a small number of exceptional situations. According to the director,
We've been incredibly reluctant to get into the assistant hiring business, because it seems to change our relationship with the participant. The perspective really shifts when the assistant is your agency's employee, and you have two responsibilities, and two obligations, and you've got to keep the employee in mind, and that might be contrary to the preferences of the person who's using that assistant.
When parents with developmental disabilities are charged with child abuse or neglect, this is primarily inadvertent rather than willful harm. Staff feel that it is critically important to offer instruction in various aspects of child care and household management to parents with disabilities. They don't rely on a routine curriculum; instead, they use various resource tools adapted to meet the needs of a specific family. They strive to identify and begin working with parents when they first learn they are expecting a child, rather than waiting until problems arise.
It is important to offer ongoing supports, rather than only time-limited supports. In the past, the agency's services to parents were time-limited, tapering off over an 18-month period. Now, they offer the option of ongoing supports. This is based on their recognition that many families have difficulties or limitations that are not likely to be resolved through instruction. In addition, they feel that societal factors--such as poverty, isolation, lack of available resources, domestic violence--create some situations which call for ongoing rather than time-limited support.
It is important to connect families with as many community resources as possible. While TTSR staff assist families to obtain human service supports that they are eligible for, they place emphasis on developing and expanding people's connections to community resources. TTSR facilitators work exclusively in families' homes and in the community, rather than in a facility-based program. They support parents in a wide variety of ways, including: communication with school personnel and other professionals; participation in parent support groups; and facilitation of their children's participation in various recreational and other community programs.
The agency has avoided participating in the provision of "supported living services" that are characterized by control or supervision. At the same time, they are committed to supporting people who need high levels of support. Along these lines, agency staff collaborate with other agencies, who share similar values, to support people who need intensive levels of support. In addition, they recognize the importance of combining both formal and informal, paid and nonpaid sources of support.
Agency staff strive to maintain each person-centered planning effort as a creative, unique, nonroutinized process. Within a state context where person-centered planning is mandated, there is particular danger that it become a routinized process applied in haste across many individuals. TTSR has made an effort to ensure that this does not occur within the agency. They have used an outside consultant to assist with ideas and strategies, and they spend time together as a staff discussing and brainstorming creative, individualized responses, one person at a time.
Agency staff have made increased efforts to assist people to form and/or expand community connections and social networks in order not to be primarily reliant on agency staff for social support. They recognize their limitations, as part of the service system, in providing social support for people. While staff put significant effort into cultivating close relationships, these are still paid relationships, many of which end due to funding changes, staff turnover, and the like. Thus, one of the priorities for staff is to try to assist people to establish other, nonpaid, potentially long-term relationships.
Note: This article is based on a longer site visit report available from the Center on Human Policy. Appreciation is expressed to Charles Galloway, Executive Director, and Sharon Fallis, Associate Director, for their assistance in the preparation of this article.
The preparation of this article was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.
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