A. An Overview of Other State Programs
The Department of Human Resources operates a state funded PAS program called In Home Aide Services (IHAS), which served 3,407 clients per month in FY 1989 and had expenditures of roughly $13 million. Recipients can receive up to 20 hours of service per week unless service is necessary to prevent imminent nursing home placement or abuse or neglect. In these two cases, services are provided as needed up to a cost cap of 67% of the average statewide public cost of nursing home care. Services are provided by salaried state employees, private or nonprofit agencies, and self employed individuals. Self employed attendants may be family members in certain situations. The program is not an entitlement, and there is an extensive waiting list (2,776 persons in 1990). The DHR ranks cases according to risk of institutionalization, and must withdraw services from current recipients who are not at risk of institutionalization when a person at risk is placed on the waiting list. Transportation, respite, escort and chore services are offered, as well as personal care. The population served by IHAS tends to be older and somewhat less poor than the MAPC recipients.
The IHAS program is often cited as a contrast to the MAPC program by advocates pushing for reform of the Medicaid program, but "both have their problems." According to advocates, neither program is really adequate to the needs of people with severe functional limitations. In order to assure the state legislature that there is no duplication of services between the DHMH and the DHR and that federal matching payments are captured whenever possible, anyone eligible for MAPC services is referred by DHR to MAPC. IHAS regulations allow anyone who "is unable to obtain the necessary paraprofessional services form another resource" to receive IHAS services and about 100 Medicaid eligible services are receiving IHAS for this reason. If a MPCP provider became available, these MPCP eligible persons would be transferred to MPCP to take advantage of the federal matching payments and increase the total number of persons who could be served by attendant programs.
The state Office on Aging administers a $4-5 million state funded program for personal care and chore services for older people. The Department of Vocational Rehabilitation offers a very small state program (37 clients) for people who are either employable or at risk of institutionalization. The program is not a major provider of attendant services in Maryland. It is small (37 clients in comparison to the 4000+ served by the DHMH and DHR), 100% state funded, and capped by the state allocation each year. There are rarely openings in this program; 95% of recipients who began with this program are still receiving its services.
The DHMH currently has three Medicaid waivers: (1) A model waiver for elderly people, which allows for case loads to increase in increments of 50, and is therefore considered "very manageable" by administrators, (2) A waiver for technology dependent children, and, (3) A community service waiver for people with mental retardation in ICF-MRs. The last is a cold bed waiver (tied to the number of people removed from lCF-MRs) which is intended to facilitate deinstitutionalization. The department sees the waivers a way to "focus resources" for specific populations, but do not see this as a viable funding base for a large-scale program.
B. Who is Falling Through the Cracks?
There are a number of populations who are unserved or underserved in Maryland. These groups include:
Persons 18-64. Although there are waiting lists for attendant for persons of all ages, the state budget sets aside special funding in both the DHR and Office on Aging budgets to be used for community based service only to persons 65 and older.
Any person who needs more than a few hours of PAS per day. These include people who use ventilators, people with Alzheimer's or AIDS.
People who work. There are tremendous work disincentives in the present system.
C. The Political Future of the Personal Care Program
The state, providers, recipients, and advocates are all clearly unhappy with the present structure of the program, but no major changes are planned for the coming year. The MAPC program, despite its growth, remains a relatively small part of the DHMH services, but it requires a growing amount of administration and coordination. Moreover, it is garnering a tremendous amount of political attention from the public, the legislature, and the governor's office. DHMH administrators express frustration with both the administrative demands and political heat, but feel bound by budget considerations from taking significant action. They are told by the governor's office that any policy reforms must at least be cost-neutral, so changes are constantly couched in the terms of a "more services for fewer people, or more people for fewer services" dichotomy.
There is little doubt that the program currently seems designed to serve best those who are least in need, but the program has come to fill an important niche in the service delivery system for relatively less disabled individuals, and removing services would certainly cause disruption for many of these recipients. The DHMH reports that some cases service applicants are pregnant or are recent mothers who simply want help with child care (they were of course denied). Such incidents show how this unstructured program has come to be viewed as a solution to a plethora of social service needs.
A DHMH proposal to drop all level I clients and increase level II and III reimbursement rates met with stiff opposition, and brought charges of attempting to "buy off" the people with high degrees of physical disability who make up the core of the consumer movement. Other advocates say it is foolish to remove services to the only people who are really benefiting from the program, especially if these people must then receive services through the state funded and overloaded social service system (e.g. the people with MI currently being served by Prologue Inc.).
DHMH administrators believe that resources need to be refocused to those who are most in need (i.e. DD, MI, Aged going to nursing homes, physically disabled with high ADL needs), but are at a loss as to when and how they will make this shift. The state Developmental Disabilities Administration (DDA) is pushing for a broadening of eligibility in order access to the federal match for its' community based residential programs. The DHMH questions whether the MAPC program with it's untrained attendants is appropriate for this population.
The DHMH administration seems interested in moving to a private agency model. In the view of state administrators, agencies would be responsible for hiring, training, and supervision of attendants as well as other administrative functions, and the DHMH could return to the role of overseer and rate setter (with which it is clearly more comfortable). The increase in expenditures required for the switch would be prohibitive at this point, unless the total caseload is cut through stricter eligibility requirements or some other mechanism. Underlying problems such as adequacy of service, degree of consumer control, and scope of services would not necessarily be addressed by a private agency model.
Members of Marylanders for Adequate Attendant Care (MAAC) and the advisory committee of Governor's Council on Handicapped Individuals have come up with a detailed proposal for overhauling the state's PAS system. The proposal creates a single PAS program which eliminates eligibility restrictions on age, income and employment status. A sliding fee scale would be established, and consumers would have a choice of independent providers, home health agencies or state employees. A residential center would be established for people that need 24 hour PAS with a supervisor for the attendants. A benefit coordinator would assist residents to obtain all federal and state benefits for which they are eligible. The proposal is an impressive attempt to consolidate PAS programs while maximizing consumer control. Political inertia and the estimated $5.1 million required for implementation or the necessity of limiting services only to those most in need may unfortunately preclude this reform package.
At least in the short term, the state seems determined to focus on cost containment and political damage control instead of developing a consensus for policy action. Advocacy groups such as MAAC are committed to keeping up political pressure, so attendant services will continue to be a hot issue in Maryland.