A. Total Services Allowed Per Consumer
There are no explicit service limits for the PCA program, and a number of clients with severe disabilities receive 24 hour services. Some high need consumers complain that reimbursement for night attendants is unreasonably low, but advocates and administrators generally view the service allocation as adequate for the majority of consumers.
B. Type of Services Offered
1. Paramedical Services
Paramedical services are allowed through the PCA program. Consumers are trained in "personal health care maintenance" and "emergency management", as well as how to train and manage attendants. ILCs may contract with RNs for individual instruction on specific medical conditions. It is assumed that people with this level of training will be able to train and supervise their own attendants to perform the PAS tasks they require, including paramedical tasks. The inclusion of people who are not capable of self-management may complicate this and other aspects of the current service delivery system.
2. Emergency and Respite Services
There is no programmatic resource for consistent provision of emergency and respite services, although PCA regulations require that the PCA agencies maintain a current list of emergency attendants. Consumers are encouraged to recruit their own back-up attendants.
3. Homemaker Services
Housekeeping is part of the service plan of most PCA recipients. If the consumer lives with family, they are required to do all or most housekeeping whenever possible.
Supervision is not a PCA service, but inclusion of the surrogacy model will extend PCA services to people with cognitive disabilities as well as physical disabilities; people who only need supervision will remain excluded from the program according to the present regulations.
The surrogacy model attempts to maximize consumer control, by making the recipient responsible for as many aspects of PCA management as is possible. Several ILCs limit services to people with a family member or significant other that could be the equivalent of a conservator. The cognitively disabled consumer and his/her surrogate are trained through the ILC, like the other consumers in the PCA program.
The inclusion of people without family networks to play the surrogate role who would need to rely on professionals (i.e., caseworkers, adult foster care workers) has only been done on a demonstration basis in a pilot run by UCP called the Options program in Tauton, Massachusetts. The Center for Humanistic Change in Western Massachusetts has also been approved to provide this surrogacy model. These surrogates would be funded by the Department of Mental Retardation (DMR).
The surrogacy concept remains controversial among some of the ILCs. Concerns involve not only the philosophical contradiction between surrogacy and the central tenants of independent living, but more programmatic administrative dilemmas:
- How does the disabled individual chose a surrogate?
- Who can and cannot be a surrogate? (Three ILCs will only allow family members or significant others of long standing to be surrogates. These restrictions led to 90% of surrogates involved being parents of technology dependent children under 18 with severe cognitive disabilities.)
- What if something happens to the surrogate? (Two ILCs require that the consumer designate a back-up surrogate.)
- How do you differentiate the role of the surrogate and the role of the consumer? What if the consumer and surrogate disagree?
- How do you differentiate between surrogate and attendant? Can a consumer fire a paid surrogate?
- Will surrogacy cases require ongoing case-management? Will the ILCs be required to provide this case management? Who would pay for the increased staffing requirements?
C. Location of Service Provision
PCA can be provided to people who live in individual homes, apartments, cluster housing and transitional living facilities. The state is considering expanding PCA services to group homes for special populations, including personal care homes for people with AIDS.
Approved services may be provided where the recipient happens to be. The time per task allocations are fairly strict, some consumers say that they don't allow for much flexibility to accommodate other needs outside the home.