Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

What Lisa Wants

Lisa* entered adult services in Vermont five years ago from a residential school. She lives in her own apartment, with staff support from 9 - 4 weekdays, and overnight five nights a week. For two years, she received her supports through an agency, where the agency hired and trained the staff who supported her. Over time, however, she began having significant difficulties in relationships with her support staff. These difficulties pervaded every aspect of Lisa’s life, causing her to feel as though she had no control, which was expressed through sometimes violent actions and reactions. Through the agency, there were limitations on her ability to replace staff, and, overall, to feel a sense of control.

Lisa and her mother began meeting with a service coordinator at the agency to look for solutions to the problem. The result of these conversations was a shift to consumer- controlled services three years ago. The agency still plays a role in Lisa’s services, primarily one of limited liability, monitoring, and service coordination. An agreement was drafted specifying the responsibilities of the agency, and of Lisa and her family. This was the first time that such an arrangement had been created by this agency, but as the result of the pioneering efforts of Lisa and her family, in conjunction with agency staff, others have worked out similar arrangements since that time.

There have been many advantages of this arrangement for Lisa. With the assistance of her sister, who is also her guardian, Lisa hires her own staff. One of these staff people formerly provided support through the agency, and they had a good relationship. She has found other staff on her own. Overall, she feels very positive about her relations with her staff now. And, over time, she is learning how to manage her staff, including how to work on problems and issues that arise.

When supports were provided through the agency, there were limitations on Lisa’s control of her time and activities, on times when staff were available, and on the mileage that staff could charge for providing transportation. With this consumer-controlled arrangement, Lisa has the opportunity to make more decisions about use of staff time. In addition, she can hire staff for whatever hours she needs and can reimburse them for whatever amount of mileage that she needs.

Lisa has always had close ties to her family, something that is very important to her. However, her sister feels that working on this together with her family has given Lisa an even greater sense of connection to them. Overall, Lisa is very satisfied with this arrangement for services, and having this sense of control has positively affected her entire quality of life. She says, “Things are better now. I like having control over who works with me, and having choices about relationships with my friends and boyfriend.” As her sister put it, “Her life used to be more about what staff wanted; now it is more about what Lisa wants.”

*Note: pseudonym

Contributed by Pam Walker, Center on Human Policy, Syracuse University, Syracuse, New York .