Personal assistance services for people with physical disabilities have been available in the federal Medicaid program since 1965, and the majority of states include this option in their state plans. However, these services commonly are used for people with physical disabilities.
It's a different story for people with psychiatric disabilities. If these services can be defined as provision of assistance by one person to another to enable the individual with disability to successfully live in the community, then why aren't more people with psychiatric disabilities using personal assistance services?
Assistance programs are attractive. For one, Medicaid already funds personal care options. But expansion to include the psychiatric population has problems. A big one is the confusion of assistance with other services, in particular case management and psychiatric rehabilitation services.
To study the situation further, these researchers did a national policy assessment and an analysis on existing personal assistance programs. They also talked to people with psychiatric disabilities about what they needed.
From the national survey, they had 41 responding states. Of those states, 32 said they provided psychiatric personal assistance and did so through programs funded by Medicaid. Further questions showed these services were case management services rather than personal assistant services. The services were for rehabilitation rather than long-term independent living.
Four states did fund personal assistance services to people with psychiatric disabilities. To qualify for one of these programs, a person had to be Medicaid eligible, age 18 or older, have severe mental illness, and qualify for long term care. A local mental health center took the applications where a case manager did an assessment. If approved, the consumer and sale manager developed a plan of care. Most of the consumers served had a schizophrenic diagnosis.
A few states also provide personal assistance services only to children with psychiatric disabilities. The assistant typically helps relieve some parents' responsibilities such as getting a child ready to go to school.
Only one state had experience with consumer-directed personal assistant services. It had a failed demonstration project.
Several states expressed frustration with the way waivers and options were determined. Program managers in some states didn't know how to start psychiatric personal assistance services and others feared there wasn't enough money for psychiatric personal assistance services. The majority were more concerned about keeping their existing services rather than starting new services.
"Findings showed that psychiatric PAS is still in nascent state in terms of policy and practice where there is ample consumer interest in these services."
Information was also used from a World Institute on Disability sample of 144 state-level personal assistance programs used for all disabilities and ages. Analysis showed that 41 of the programs indicated that psychiatric disability qualified an individual for receiving personal assistance services. These programs also included people with mental retardation, brain injuries, and other impairments. This means people getting psychiatric assistance are getting it because they qualify under a different disability or because psychiatric disability is in a roster of qualifying conditions.
When asked about needs, 462 consumers in 19 programs in 15 states responded to a survey that had open-ended questions and a service checklist. Half the survey respondents were women. The most frequently mentioned need was transportation followed by emotional support, and help negotiating services systems and agencies. The majority of respondents said they already were receiving these services from family members, friends, roommates, case managers, self-help organizations, job coaches, or others. Fears about having an assistant included paying salary and safety.
This research was supported by the National Institute on Disability and Rehabilitation Research in the U.S. Department of Education. #1421
Pita, D. D., Ellison, M. L., Farkas, M., & Bleecker, T. (2001). Exploring personal assistance services for people with psychiatric disabilities. Journal of Disability Policy Studies 12(1), 2-9.
Keyword: Personal assistance