History of Act 150 Attendant Care in PA
In December, 1987, Pennsylvania passed the ATTENDANT CARE SERVICES ACT (P.L. No.150). This was in many ways the great climax of a concerted effort of people with severe disabilities, human service agencies, and legislators across the Commonwealth to create a community-based alternative for long term care services.
Attendant Care had actually started through budget funding by the legislature in 1984 which was followed by the actual supporting legislation of 1987. The PA budget line enabled demonstration grants to provide services and to test models of service, including the Consumer Employer Model.
Until the demonstration grants and later Act 150, families and friends were stressed to the breaking point to provide care for individuals with disabilities who were trying to survive in the community in a personal living situation. At the breaking point, these individuals were swept into group living situations, such as nursing homes and personal care homes.
These individuals gave up privacy, independence, personal possessions, and self-determination in exchange for personal care: a sudden and profound change to those critical components to quality of life in the American society. Some individuals fared well in the exchange. Others suffered greatly from the loss.
Act Crafted to Create Choice
The Act was carefully crafted to create a choice for those individuals for whom self-direction and autonomy was most important. The opening policy statements of Act 150 include from Section 2:
#1 The increased availability of attendant care services for adults will enable them to live in their own homes and communities.
#2 Priority recipients of attendant care services under this act shall be those mentally alert but severely physically disabled who are in the greatest risk of being in an institutional setting.
#3 Recipients of attendant care have the right to make decisions about, direct the provision of and control their attendant care services. This includes, but is not limited to, hiring, training, managing, paying and firing of an attendant.
These policies set the stage for a program design unlike anything the Commonwealth had ever experienced. Within the Department of Public Welfare, the Commonwealth turned to those community based organizations most committed to personal empowerment and freedom of choice for people with severe disabilities for implementation of Act 150. Centers for Independent Living took the lead as contractors in the urban areas. United Cerebral Palsy took the lead in the more rural communities where there were no strong Centers.
With more philosophy than well-tested models to start from, the Act 150 Attendant Care Program began as a demonstration project. Bidders for the state contracts were encouraged to experiment within the policy guidelines in the design of the local program. Some projects took the matters of consumer-control to the absolute limits. Other projects followed more the traditional lines of structured regularity with a great deal of agency control. The contractor’s meetings were exciting times to compare notes and learn how risk-taking had succeeded or had failed. The local community advisory groups had much to debate and to study. Individuals with severe disabilities who benefited from attendant care services became very obviously more secure in their family and community life.
In an on-going process of evaluation, it became necessary to standardize the program requirements so that there was a uniform array of program options statewide. Available options could no longer be related to geographic residence and which agency was the service provider in that geographic region. It was determined that both the consumer-control option and the agency-control option had benefits to different types of people. People are individuals with differences, and one “size” does NOT fit all.
True consumer empowerment was now recognized to happen only when the provider offered the full spectrum of consumer-control and agency control model options with every shade in between. Those agencies that tended to be comfortable with one model over the other were forced to come to grips with the true meaning of consumer choice. It was no longer just a “catch-phrase.” Independent Living Centers and other providers of the program learned more about their consumers. The individual programs became more complex. As more choices became available, consumer demand increased and the statewide waiting list for services grew.
Focus on the Most At-Risk
The Independent Living providers of attendant care services continued to become more focused and educated about people with the most severe disabilities. Over time, the population most frequently served by centers for independent in Pennsylvania were no longer the typical employment-seeking clients of the Office of Vocational Rehabilitation. Instead, the most active independent living centers in PA were now working most closely with the group of individuals who had started the nationwide independent living movement in the 1970’s: those persons who were the most severely disabled and who were the most threatened with institutionalization.
Act 150 clearly directs the Department of Public Welfare in the selection of providers under Section 4:
“©Proposal selection criteria.–Proposals shall be selected based on service priorities developed by the department; however, priority shall be given to proposals that will serve the severely disabled and those at greatest risk of being institutionalized as defined by the department.”
“(e) Participation of eligible clients.–Providers, where appropriate, shall include eligible clients in the planning, start-up, delivery and administration of attendant care services and training of personal care attendants.”
In conjunction with this process, the centers for independent living also became providers of services under a new, innovative program within the Department of Public Welfare. It was called the Community Services Program for Persons with Physical Disabilities (CSPPPD) and was based upon the Federal OBRA ’87 legislation requiring deinstitutionalization services for people with developmental disabilites that were segregated in nursing homes for services when a more integrated setting was more appropriate.
This new program took Independent Living Center staff into the nursing homes. In these institutions, they found those individuals who had slipped into an institution before the advent of the Attendant Care Program. Since many of the managers and independent living center staff and board members are also persons with severe disabilities, the full impact of the absence of attendant care services hit a VERY PERSONAL CHORD.
Every day independent living staff with disabilities had to face and struggle to undo the devistation to individual lives caused by the absence of community options. In an URGENT effort to prevent that devistation from happening to others (like themselves), the attendant care waiting list became the “all-consuming agenda” of the independent living movement in Pennsylvania.
ADAPT OR PERISH
The fact that the elimination of the attendant care waiting list was a “personal issue” and not a academic or agency budget issue provoked the independent living centers to discount the risks of powerful systems advocacy. Time was of the essence. The methods of ADAPT were studied and employed. This included training and organizing “at risk-individuals” to work in letter writing campaigns, intense meetings with state officals, rallys, demonstrations, civil disobedience, and sleep-ins at the Capitol. As a direct results of these efforts and the responding efforts of Governor Ridge and his adminstration, the waiting list for the attendant care program that began in 1985 was eliminated in the State Budget for 1998/99.
Expansion to the Attendant Care Waiver
Another part of the evolution of the Pennsylvania Attendant Care Program has been the move by the state in conjunction with attendant care providers to seek Federal Waiver funding under Title XIX. During the 1980’s, the Federal Waiver programs could not permit the consumer-control emphasis that the Pennsylvania Act 150 program required. However, the Health Care Finance Administration had been pressured by the independent living movement nationwide (most notably ADAPT) to offer the states greater flexibility and to move away from strictly medically oriented definitions of long term care.
When the Federal policy relaxed, a court order interpreting the language in Act 150 forced the State and the attendant care providers to revisit the issue of seeking Title XIX Waiver money to expand the program. This directive is clear in Act 150 in Section 5:
“(b) Federal and private funds.–Programs for attendant care services, under this act, shall use federal funds, wherein possible. The department shall apply for and use, subject to specific appropriation by the General Assembly, all federal funds which become available to carry out a program of attendant care services under this act. The department shall use any private funds which become available to carry out a program of attendant care services under this act.”
The preparation, submission, and enrollment process in the Attendant Care Waiver was laborious and complicated for all parties. Great effort was taken to make the Waiver as similar as possible to the Act 150 program. But there are subtle differences that affect the state, the providers, and the consumers. The mastery and marriage of the two programs has been an exercise in frustration and complexity. Once again, providers had to reach deeply into their understanding of consumer’s needs in order offer them acceptable service options that would also expand attendant care services to more people statewide. The fact that more individuals could be served through the dual program became the over riding justification for the effort to work toward full implementation of both programs statewide.
The Unique Nature of Attendant Care:
Many policy makers and potential providers fail to grasp the distinction of attendant care from otherwise available home health services. Attendant Care, as defined by the World Institute on Disability, is “one person assisting another with tasks the individual world normally do for him/herself if he or she did not have a disability.”
These tasks include:
- personal maintenance and hygiene, such as dressing, bathing and catheter care;
- mobility needs, like getting in and out of bed or wheelchairs;
- household responsibilities, including cooking and cleaning;
- cognitive tasks, like money handling and budget planning; and
- communications access, such as interpreting and reading.
Attendant Care aims at maintaining well-being, personal appearance, comfort, safety and positive interactions with the community and society with maximum direction from the consumer.
Attendant Care differs from traditional home care and homemaker service in several ways:
- Attendant Care is available when the consumer needs it seven days per week, twenty-four hours per day; where as traditional services are available only during traditional service hours.
- Attendant Care provides long term service where as traditional services are short term.
- In Attendant Care, the consumer’s right to determine the extent to which he/she control and direct his/her own service is paramount; whereas in traditional home health care and homemaker service, the provider agency selects and supervises the care giver, designates the duties and sets the schedule.
According to the research and training Center on Public Policy and Independent Living at the World Institute on Disability, in the U.S. alone, it is estimated there are 9.6 million persons who need Attendant Care. Of these 7.8 million people live in the community, 1.5 million live in nursing homes.
The story of the Attendant Care Program continues in Pennsylvania. It is a continuous struggle for all involved, state officials, advocates and service providers. But, the historical momentum is clear: Consumer control and the reversal of the institutional bias in the provision of long term care services will continue to shape public policy and service implementation in Pennsylvania’s.
Essay by Kathleen Kleinmann, April 1996