In the early 70s, Title XX funded homemaker services were provided through the Executive Office of Elder Affairs and through the Department of Social Service. Administrators in the Massachusetts Rehabilitation Commission (MRC), who were strongly influenced by the early independent living movement, began to develop transitional living programs incorporating the consumer control philosophy of independent living. They gradually moved from housing and traditional rehabilitative services to independent living and peer support. The Boston Center for Independent Living (BCIL) developed out of one of these transitional living programs. Nine other independent living centers were subsequently developed, one from a transitional living program and others which started as advocacy and peer support centers.
In 1976, the MRC had recognized the need for PAS so that people could move into their own homes and apartments, and negotiated with the state Medicaid office to access funds for PAS. Massachusetts added personal care to the state Medicaid plan, but because PCA was such a small part of the budget and the MRC was already involved, the state Medicaid office did little in the way of oversight. This hands-off approach to the program by the state Department of Public Welfare (DPW) has continued, although the state now faces federal pressure to change this relationship. Independent living centers were given the option of adding the PCA program to their service package, and currently six of the ten have done so.
For twelve years the PCA program had no formal regulation or oversight, only a set of guidelines which the ILCs adapted to fit their own community and organizational structure. It almost exclusively served adult wheelchair users who needed 14 or more hours of assistance with IADLs and ADLs. As the program expanded, lack of regulation led to inconsistencies in the administration and coordination of services. Concern also grew among representatives of other disability groups (notably ARC), because the services were limited to people with physical disabilities in areas served by ILCs. This led to increasing pressure on the DPW to define and expand the program.
The DPW responded by formally creating a PCA task force, composed of ILCs as well as representatives of other disability groups, (such as the DD Council, UCP, and ARC) to develop program regulations and iron out how people with mental retardation could be served by a program originally designed as an extension of a physical disabilities rehabilitation. The first regulations were promulgated by the Task Force in October, 1988.
The new regulations defined eligibility far more broadly, including children, and people whose disability did not require a wheelchair. A key issue addressed by the PCA regulations was the inclusion of people with cognitive disabilities who are not able to self-manage all aspects of PCA services. It was expected that the Department of Mental Retardation (DMR) would fund the additional support services needed, and the DPW would fund the PCA portion. The new consumers would be served through something broadly defined as "the surrogacy model", which involved people other than the consumer in PAS management. The new regulations defined the surrogate as "the consumer's legal guardian, a family member, or any other person identified in the personal care service plan to be responsible for performing certain PCA management tasks the consumer is unable to perform. These PCA management tasks may include hiring, firing, supervising and otherwise directing the PCA ... A consumer's surrogate cannot also be his PCA."
Many administrators and advocates in the ILCs had (and continue to have) both philosophical and practical objections to the surrogacy model. They expect the administrative resources required for the surrogacy model to be considerably higher than for self-managing consumers. Surrogates are seen as incompatible with the goals of the independent living movement: by including surrogates, particularly paid service professionals such as case managers, the primary goals of self-determination and personal choice seem endangered. Moreover, some ILC administrators and advocates claim that the service provider functions threaten to overwhelm the advocacy function of the ILCs. By agreeing to include surrogates, ILCs will be even further committed to the business of service provision. Several ILCs discussed the possibility of getting out of the PCA program altogether. Responding to this possibility, the new regulations allow for designation of local nonprofit agencies as PCA program coordinators in areas where the ILCs refused to offer surrogacy.
The 1988 regulations were promulgated during "the Massachusetts miracle", a period of unprecedented economic growth that was nationally publicized in the presidential campaign of Governor Dukalds. An economic decline and a new Republican administration have dramatically changed that climate. The implementation of these regulations and addition of new PCA agencies was delayed, due in part to economic crisis, administrative intransigence, and political infighting among disability groups and among state agencies. During and after the promulgation of the 1988 regulations, some developmental disabilities (DD) advocates became increasingly frustrated with the pace at which the surrogacy model was being implemented, and in 1990 threatened the DPW with a lawsuit if concrete measures were not taken to include people who needed surrogacy.
The worsening budget crisis intruded into this already complicated process. The social service system in general, and the Medicaid budget in particular, were considered to be out of control. The DPW came under intense political pressure to cut costs. Restructuring and a general reduction of administrative personnel led to a loss of practically all administrators involved in any way with the PCA task force and the development of the 1988 regulations. Advocates say that the new administrators' lack of experience and understanding of the political and historical context of the PCA program and constituency it served have led created some friction between many advocates and the DPW administration.
The DMR was facing similar political and economic pressure, and began to cut services. This caused DD advocates to intensify their demands that the surrogacy model be implemented quickly, so that recipients losing DMR services could receive at least some support through the PCA program. Not surprisingly the DPW resisted adding a new population to its already bulging caseloads in the current fiscal climate. Fearing "the woodwork effect", the DPW estimated the potential cost of instituting the surrogacy model, and concluded that there was a possibility that the program expenditures could jump from $25 to $100 million. DD advocates consider the methodology for this estimate very suspect. It included the waiting list of MRC head injured population, the MR waiting list, the waiting list for other people with developmental disabilities (e.g. people turning 22 and no longer eligible for special education), and people in mental hospitals. Based on these figures, the DPW predicted they would add 2500 to 5000 new people to the PCA program at a cost of $75-$100 million. Consumer groups felt that this estimate was quite exaggerated, because it counted people who probably don't need PAS.
In the Spring of 1990, new DPW administrators drafted their own set of PCA program guidelines which contained costs by limiting eligibility and services. Proposals were drafted which suggested limiting eligibility to those who are eligible for SNFs, limiting eligibility to those at risk of institutionalization, instituting a 40 hour per week service cap, and narrowing the scope of reimbursable services. As word of these proposals spread, there was a swift consumer backlash. Some recipients threatened to commit suicide. An emotional public forum with consumers and DPW administrators was organized by members of the PCA task force. This meeting and other political pressures led the DPW to withdraw these proposals.
Between 1988 and January of 1990, there were 16 applications by potential "Personal Care Agencies" which would offer the surrogacy model of service provision, but none had been officially approved during this period. Two ILCs began to offer surrogate services, another started to offer surrogate services but then withdrew. The PCA task force began to review applications for new providers, and by August 1990 the committee had developed a criteria list. A number of home health agencies are considering applying to be providers, but they need to demonstrate a sensitivity to independent living and be able to meet consumer control goals. Two new personal care agencies were recently approved, but at the time of the site visit they were still waiting for reimbursement rates to be set by the state Rate Setting Commission.
The DPW has recently appointed a full time administrator of the PCA program, but the department as a whole seems to remain reluctant to facilitate any program development. DPW officials acknowledge that people with mental retardation and people with AIDS could benefit from PCA services, and plan to work with these groups to develop new PCA agencies.
The ILCs continue to be divided over the surrogacy issue. The ILCs also, face a divisive struggle over the issue of attendant withholding. A recent IRS decision makes the ILCs responsible for assuring that FICA is paid on reimbursements for independent providers. Regardless of how the situation is resolved, additional administration and paperwork will increase the ILC's role in PCA service delivery (a role to which many ILC advocates object).