This article is based on an evaluation, conducted by the Center on Human Policy, of the Self-Directed Personal Services (SDPS) program operated through Enable, a human service agency in Syracuse, New York. SDPS is a program of the New York State Department of Social Services, for people who receive Medicaid and meet other eligibility requirements (state regulations stipulate that participant’s must be “medically stable” and “self-directing,” or utilize a “self-directing other”), offered by Enable through a contract with the Onondaga County Department of Social Services. Within a state where personal assistance services are typically controlled by service agencies and often limited to those with physical disabilities who do not have high levels of need f or support, the people who established this program envisioned the opportunity for consumer control, as well as the inclusion of people with a wide range of needs and abilities. This vision was based upon the experiences and desires of people with disabilities, as well as various examples, throughout the country, of consumer-driven services.

Personal Assistance Services

Personal assistance services are supports that are designed to assist people to live in their own homes rather than institutions or other facilities. Across the country, such services have been provided in vastly differing ways. In a traditional, medicalized model of home care, personal assistance services are provided by service agencies and encompass a narrow range of household and personal care activities determined in an assessment conducted by a home care agency. In contrast, many people with disabilities and advocates have argued for, and in some cases successfully developed, consumer-driven personal assistance services which encompass a broad array of supports, determined by the needs and desires of the individual with a disability (Centre for Research and Education in Human Services, 1990; Human Services Research Institute, 1991; World Institute on Disability, 1987). As described by the World Institute on Disability (1987, pp. 3, 4): “Personal assistance involves assistance with tasks aimed at maintaining well-being, personal appearance, comfort, safety and interactions within the community and society as a whole…Our conception of personal assistance services goes much deeper than a simple listing of tasks…”

Summary of Evaluation Findings

Themes drawn from interviews with program participants, personal care assistants (PCAs), administrators, county representatives, and others working in the human services form the basic findings of this evaluation. They are summarized below:

1. Participants felt that this program gives them opportunity to have greater control over their lives. In particular, participants highly appreciate having the ability to choose their own PCA and to determine when that person will assist them.
2. Participants generally obtain the assistance they want and need. Most of the participants receive the amount and type of assistance they need from SDPS. However, some people, particularly individuals with higher levels of support needs, felt they had not been allotted a sufficient number of hours of PCA support by the county. In addition, because state regulations limit the tasks of PCAs to a list of Medicaid allowable tasks, some participants reported that they do not receive the type of support they need and desire, such as assistance with child care, community activities, and transportation.
3. Participants have a high degree of dissatisfaction with other traditional home health care agencies. One of the major complaints they had of other agencies was that they had no choice about who was sent as a PCA and little choice as to when this person would come. When assistants did not show up, the agencies were often unable to find back-up support.
4. Many people use their own networks or informal contacts for PCAs. A few participants have found assistants through advertising in the newspaper, but most have selected friends, relatives, neighbors, or people they knew as human service workers at other agencies.
5. PCAs receive a higher rate of pay than in most other home care agencies in the area. Participants feel that this enables them to both obtain and retain higher quality support. In addition, full-time PCAs appreciate the health insurance and other benefits offered to them.
6. Special consideration should be given to cases where people are assisted by a “self-directing other.” For some people, this works well, and they are assisted to make their own decisions and take control of their own lives. For other people, t his may not work well, and they may be essentially under the control of their “self-directing other,” whether this be a family member or another person. Therefore, careful consideration needs to be given to use of a self-directing other, including the following:
   • people should be presumed to be self-directing; a self-directing other should be utilized only when there is clear evidence of need for this;
   • the self-directing other should be a family member, or close, unpaid friend, who is in regular contact with the person, and very familiar with his or her needs and preferences;
   • the person with a disability should make the determination as to who is the self-directing other.
7. Special consideration should be given to the support of people who live in agency-controlled settings. SDPS supports a few individuals who live in agency-controlled settings (e.g., group homes). The philosophy on which SDPS is based is incompatible with the orientation of such settings. Thus, it is unlikely that SDPS supports in an agency-controlled setting would significantly alter an individual’s ability to control most dimensions of his or her life. However, SDPS might work in collaboration with another agency to assist an individual to move to a home of his or her own, with control.

Service System Limitations

As previously stated, those who started this program envisioned consumer control, and inclusion of people with a wide array of disabilities and support needs. However, there are many limitations to achieving this vision based on state regulations for thi s program. Many of these are common in other states as well. They include:

1. Limited pay and benefits. Traditionally, across the country, personal care assistants earn very low pay, and sometimes receive no benefits, as well. This represents a societal devaluation of people who have disabilities and those who support them. The quality of life for people with disabilities would be enhanced, in part, if PCAs received better pay and benefits (World Institute on Disability, 1987). Within this framework, Enable is making a significant effort to do what it can to increase the compensation for PCAs. For instance, the agency allocates a lower percentage of its funding than most agencies in the area for administrative costs, passing along more to PCAs; offers benefits; and offers care for people with high levels of need at costs typically associated with those with lower levels of need.
2. Agency-determined versus person-determined duties of PCAs. People with disabilities should be presumed to know best what they need, and they should therefore be involved in determining what tasks PCAs assist them with (Centre for Research and Education in Human Services, 1991; Lyle O’Brien & O’Brien, 1992).
3. Allowance for in-home only versus home and community supports. PCA programs should support people wherever they need supports to do the necessary activities of their lives, in or outside of the home (National Council on Independent Living, 199 4; World Institute on Disability, 1987).
4. Limitations on types and levels of support. PCA programs should provide people with whatever types and levels of support they need to remain in their own homes (Lyle O’Brien & O’Brien, 1991; WID, 1987). Within New York State’s personal attend ant services program, the list of allowable support tasks is narrow, for example, including only “light housework,” and with no mention of tasks related to dimensions of life such as communication, child care, or civic and community involvements.
5. Restrictions on family members as PCAs. People with disabilities should be able to employ family members as PCAs if they so choose (Lyle O’Brien & O’Brien, 1991; WID, 1987). In many traditional home care agencies, family members are not allow ed to be paid. State guidelines for SDPS are more flexible, though they still contain significant restriction; they permit employment of some family members, but not others.
6. Limited range of funding/management options. Consumers should have a range of options available for managing their personal assistance services, from a direct cash payment model in which they manage their own services, to a model in which an agency assumes some responsibility for this in consultation with the person (NCIL, 1994; WID, 1987). Within New York State, most personal assistance services are provided through agencies which assume control over the management of services. The SDPS pro gram provides the opportunity for people to have control over some aspects of the program (e.g., hiring and firing PCAs) and limits their control over others (e.g., determining what PCAs will assist them with, since this determination is limited to Medicaid allowable tasks).
7. Limitations to diversity of people served. Personal assistance services should be available to all people, with no exclusion based upon health/medical status, type of disability, age, and so forth (Kennedy, 1991; NCIL, 1994; WID, 1987). Currently, within New York State, guidelines screen out people based upon medical stability. The program coordinator of SDPS at Enable has advocated for the inclusion of people who may not be considered medically stable (e.g., some people who have medical fluctuations related to AIDS). In addition, across the country, many personal care assistance programs have been oriented toward people only with physical disabilities and have excluded people with mental retardation, mental health labels, or those with severe and multiple disabilities (Kennedy, 1991). Again, the SDPS coordinator at Enable has advocated for the inclusion of such people within the program.

Conclusions

This program offers people much more control than the traditional home care agencies. In addition, administrators of this program have advocated for the inclusion of people with a wide variety of support needs. However, there still remain many system-level constraints to these efforts in New York and other states. A challenge is to continue to expand these efforts to make available truly consumer-driven personal care services to people with a wide range of disabilities, including those who have high levels of need and/or those who require assistance in managing their own supports.

References

Centre for Research and Education in Human Services. (1990). Self-directed attendant services: Toward a consumer oriented policy and perspective on personal support services. Kitchener, Ontario: Author.

Human Services Research Institute. (1991). New models for the provision of personal assistance services: Final report. Cambridge, MA: Author.

Kennedy, J. (1991). Personal assistance services: Program policy issues. Oakland, CA: World Institute on Disability.

Lyle O’Brien, C., & O’Brien, J. (1992). A checklist for evaluating personal assistance services (PAS) policies and programs. Lithonia, GA: Responsive Systems Associates.

National Council on Independent Living. (1994). Position on personal assistance services. Author.

World Institute on Disability. (1987). Attending to America: Personal assistance for independent living. Oakland, CA: Author.

Note: This article is based on a larger report which is available from the Center on Human Policy: Walker, P., Taylor, S., Searl, J., Shoultz, B., Hulgin, K., Harris, P., & Handley, M. (1996). Evaluation of the Self-Directed Personal Services pro gram operated through Enable.

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.