A. An Overview of Other State Programs
Services in Massachusetts are generally compartmentalized within departments serving specific constituencies. Aside from DPW funded PCA services, people with disabilities may access the ILC managed PCA system in two other ways: (1) Through the state's insurance system for people with disabilities, Commonhealth Extra. Although there are no income or asset limits, there is a sliding scale. (2) The MRC offered PCA services for working people with disabilities. Since Commonhealth Extra has been created, the MRC has closed intake. The MRC also provides up to 10 hours per week of basic homemaker services for roughly 1100 working age individuals with disabilities.
Older disabled people are generally not served by the PCA program (only 7% of the 1989 PCA caseload was over 65). They tend to use services in the Department of Elder Affairs are coordinated through local Area Agencies on Aging (AAAs). Many elderly people, particularly couples, cannot meet current Medicaid income eligibility requirements. There is a Medicaid Waiver for people over 65, which served 3381 clients in 1990. The waiver has more generous income eligibility, but funds are very limited. In 1974, 27 state-funded homecare corporations were combined with AAAs, and these function as independent assessment and case-management agencies. The AAAs contract with provider agencies for provision of PAS and homemaker services. In the current fiscal crisis, AAAs have had to cut off services to "the least frail" consumers, and institute across the board service cuts. The state spends roughly $1 billion on nursing homes per year. A pilot pre-admission screening program run by three AAAs was so successful that the program was expanded statewide this year. However, an AAA administrator observes that "there is nothing to divert them into", i.e., homecare is so limited that it cannot be a viable alternative to nursing home placement. Adult foster care is utilized by some older people with disabilities.
The Department of Mental Retardation (DMR) has historically relied on a costly system of ICF/MRs and state schools, but this system has been called into question by DD advocates such as ARC. A recent study commissioned by the governor says that nine "state schools" for people with mental retardation were built to house 10,000 people are currently housing only 2,600 with a staff to client ratio of three to one. The study recommends closure of these facilities and placement of residents into community facilities. A large DMR Waiver (which served 14,024 people at a cost of $49 million in 1990) has redirected a significant percentage of funding into community services. Smaller group homes are being expanded, and other resources such as adult foster care and more individualized "adult family care" are being developed.
As previously noted, the state has modified its regulations to allow for PCA services to people with supervision as well as personal care needs. A local ARC agency has been approved as a PCA coordinating agency which will offer the surrogacy model, and advocates hope PCA services can ultimately be extended to the following groups:
- people with cognitive disabilities living in the community with aging parents.
- people coming out of special education at age 22, who would probably have been picked up by state funded programs (such as sheltered workshops) before the budget cuts.
- residents of schools for those with behavior problems (those with both physical disabilities and mental disabilities).
- people living in group homes who could become more independent over time and move to their own apartments.
B. Who is Failing Through the Cracks?
Massachusetts offers extensive services to most people with disabilities, but these services are not comparable across populations. The ILCs' traditional constituency is young people with disabilities, and this is reflected in the PCA caseload breakdown. People with cognitive disabilities or older people who could probably benefit from the independent living orientation of PCA services do not currently access the program, and may end up in far more restrictive services. Advocates for people with AIDS/ARC are beginning to look at PCA services, and the state would like to designate an AIDS service agency as a PCA coordinating agency for this growing population (as an alternative to more costly services such as home health). DD advocates say that the relatively small number of PCA providers limit access to all people with disabilities who are not residing in a geographic area served by an ILC, but an advisory council member points out that Massachusetts is a relatively small state and geographic access is not a big issue.
People who rely on solely state funded agencies are most likely to fall through the cracks in the current economic crisis, hence the concern over consumers in both the Department of Elder Affairs and the DMR. AAA administrators say that their system is in crisis as resources shrink and populations grow both in number and in severity of disability. However, the present concern over expenditures may in fact lead to more comprehensive community based services, as the state looks for ways to contain soaring institutional costs.
C. The Political Future of the Personal Care Program
The federal match is making the personal care option an increasingly attractive funding source for services to different disability groups. The most vocal to this point have been the DD advocates, but there is an enormous need for expansion of PAS in the state's senior services system. An AAA homecare agency has applied to become a PCA coordinating agency, and others will no doubt follow. There is some talk of using PCA services in the state's rest homes for the elderly.
At this point, both the DPW and the ILCs seem to be resisting the pressure for expansion of the PCA program. The surrogacy issue is symptomatic of this struggle. How can Massachusetts increase services to people who need them, while maintaining the unique features of consumer control that define the service delivery system? Can the state afford such an expansion?
There are no easy answers for these questions. A growing number of advocates are saying that the ILCs should get out of the business of service provision altogether, that the ILCs are becoming "Medicaid mills" instead of advocacy resources. The fact that the PCA program has become the primary source of revenues for several ILCs suggests that there is some truth to this argument, but also makes it unlikely that these ILCs will abdicate their service provider roles. Advocates among the ILCs are clearly split on issues of surrogacy and attendant withholding. Representatives of different disability groups such as the DD advocates are often at odds with the ILCs on many PAS related issues.
The friction between the DPW, disability advocates and other state agencies on issues such as surrogacy is understandable, given the current climate of crisis. To this point, the DPW's main responsibility for the PCA program has been to reimburse the ILCs. During the interviews, there was a palpable sense of anxiety among DPW administrators as they braced for new staffing cuts. Moreover, HCFA representatives have singled out the PCA program as discriminatory and poorly managed. Proposals requiring increased administrative commitment and greater expenditures will therefore undoubtedly be viewed with trepidation by the beleaguered DPW staff.
Despite the impediments to cooperation among advocates and state agencies, cooperation is precisely what is required for the program to weather the current crisis. Massachusetts' PCA program is nationally recognized by the disability movement as a model of consumer control, and the state administration is struggling to maintain this focus. Figuring out how to facilitate provision of consumer controlled PAS in a cost-effective manner to people of all ages and all disabilities has thus far eluded all states, but Massachusetts has probably come the closest. If the impacted groups are willing to coordinate and consolidate their resources, there is a potential for an extraordinary system of community-based service delivery.