A. An Overview of Other State Programs
According to the Institute for Disability Access, roughly 20 programs in 5 state agencies (Department of Human Services, Rehabilitation Commission, Department of Mental Health and Mental Retardation, State Commission for the Blind, Department on Aging) are involved in some aspects of attendant service provision in Texas, and a full discussion of all these programs is clearly beyond the scope of this report. In terms of both expenditures and caseload, programs administered by the Texas Department of Human Services are the most significant.
Aside from Primary Home Care, the largest PAS program is the Family Care Program, a state-funded program which serves over 23,000 clients. This program is similar to Primary Home Care - contract agency providers are used, case-managers oversee many aspects of service delivery, and a maximum of 30 hours per week is provided. However, income eligibility is somewhat higher, no "medical need" must be demonstrated, and RN supervisors are not part of the service delivery system. Provider agencies compete for a DHS contract in a given region, rather than compete for individual clients like the open enrollment system of the PHC program.
The DHS administers the state-funded Client-Managed Attendant Care Program, which currently serves 350 clients on a sliding fee scale at a budget of $2.6 million. Clients are responsible for hiring, firing, training and supervising their own attendant. Paramedical tasks delegated by a doctor can be provided. Clients can either receive a block payment for PAS (only one recipient has chosen this option), or may have a contract agency write the attendant's check and take care of necessary tax withholding. The contract agency also provides for a pool of attendants for emergency back-up.
The DHS also offers a small voucher program which gives individuals or their families up to $300 per month for disability related needs including PAS. Limited sliding fee scale programs exist in certain areas which allow PAS provision on the job for working individuals. Shared attendant programs exist at 3 sites in order to provide more than 30 hours of PAS (recipients live in apartment complexes with at least one attendant on site at all times).
Medicaid waiver programs exist for children with disabilities, for people with mental retardation who would otherwise be institutionalized, and for people eligible for institutionalization, whose developmental disabilities are considered "related conditions", i.e. epilepsy, cerebral palsy, etc. The state is considering applying for waivers for people with AIDS/ARC, and for people who meet the medical criteria for nursing homes, i.e. they need daily observation or treatment by a nurse (e.g. people in a post acute hospital episode, or going through an acute episode in the community).
B. Who is Falling Through the Cracks?
Despite the number of programs existing in Texas, advocates identify many groups who are unserved or undeserved in their homes and communities. These include:
People who cannot go for even one day without assistance or require more than 30 hours of service. Such individuals, if they do not have informal supports and other resources may remain in nursing homes and other institutions.
People who have cognitive impairment or mental illness who do not have ADL deficits but need supervision.
People who have family support may not receive paid PAS, even when informal service provision is causing social and economic distress for the family.
People with head injuries which occurred after age 22, who need intensive supervision rather than direct ADL assistance.
People or families may not know about the services available, e.g. undocumented workers.
C. The Political Future of the Personal Care Program
Primary Home Care will continue to be the largest component of the state's service delivery system. As the aging population grows and state funds become more limited, there will be pressure to direct more consumers to programs which access matching federal funds. The DHS recognizes several policy issues which will need to be addressed as the program develops.
Primary Home Care appears to have fulfilled its mandate to eliminate ICF Level II clients, but it has done this in part through a special waiver to cover the people who were income eligible for nursing home placement but whose income exceeded state levels for Medicaid eligibility outside an institution. The waiver will run out the summer of 1991, however most recipients will remain eligible for PHC because of a special clause in Section 4711 of OBRA 1990 that applies only to Texas.
The relationship between the state funded Family Care program and the Medicaid PHC program has come under some scrutiny. Both programs offer essentially the same service, i.e. PAS through agency providers. The differences between the program regulations have been questioned by both industry representatives and consumer advocates.
PHC serves people who meet strict income eligibility requirements, whereas Family Care has less strict income eligibility requirements. Because of federal regulation, agency RNs have become a critical part of the PHC program. The Family Care program, however, does not use RN supervisors (primarily because of cost considerations). Social workers involved in both programs say that for all practical purposes, consumers in the PHC and Family Care programs have the same conditions and are receiving the same services. Some advocates therefore question the high level of RN involvement for all PHC recipients, saying that this may be unnecessary and intrusive, as well as costly. They suggest decreasing mandated RN supervision, in order to free up program expenditures for more services. The DHS administration does not believe that increased flexibility in RN supervision requirements would in fact lead to significant program savings.
Industry representatives argue that, given the reimbursement level for PHC, the DHS is getting "a tremendous bargain" in the RN supervisors. They suggest that RNs should be added to the Family Care program as well. The DHS administration says that it would like to add RN supervisors to the Family Care program, but believes the cost would be prohibitive.
The state is attempting to develop a solution to the service gap problem in PHC. A study is being conducted to identify the number of clients who are at risk if they are without services for even one day. The DHS administration is meeting with advocates and vendors, and plans to develop recommendations for the DHS board by August of 1991. The result may be that contract agencies will be required to provide dependable emergency services and more frequent supervisor visits for those at risk, and agencies will be reimbursed at a higher rate for these consumers.
The provision of paramedical services remains controversial. Disability activists are frustrated that program changes did not follow modification of regulations by the state Board of Nurse Examiners. The state feels it is bound by federal regulation as well as liability concerns from offering invasive medical procedures as part the PHC services, despite modification of state regulations. The issue appears to be stalemated at this point.
In general, DHS administrators demonstrate an understanding of and philosophical agreement with the goals of the independent living movement. The state appears committed to continuing dialogue and consensus with both advocates and vendors in the development of community based services.