By Nancy Seyden(1) and Bob Robert(2) A rich history lies behind the development of In-Home-Support Services (IHSS) and Public Authorities (PAs) in California. The history is filled with vision, struggle, drama, and the voices of many people. Advocates sought to address the needs of people who are disabled, blind, and elderly who require assistance with personal care and/or domestic services. The people wanted to live independently at home, in homes of their choosing, and to participate in their communities with the hands-on assistance of others. They wanted to have a say in the services provided. With adequate support and assistance from others, they knew independent living could be achieved. Herewith begins the story about independent living, the experience of disabled people who live with assistance from others and who receive public assistance. Many post-polio and respiratory dependent individuals lived at Rancho Los Amigos in the 1950s, a rehabilitation facility in Downey, California, where the story begins. To save money, local administrators decided in 1953 to move about 100 patients into the community. This bold move was only made possible because the March of Dimes offered to pay for the attendant care. The March of Dimes decided to discontinue its support of the program after the anti-polio vaccine had been developed and was successful. Several people who were affected by the cuts went to the California legislature to request funding for their desperate situation. The legislature responded positively with the Attendant Care program but only provided very limited funding. In the 60s and very early 70s, the Aid to the Totally Disabled (ATD) program provided a monthly cash payment of up to $300/month to disabled persons who needed attendant care. Recipients would then hire and pay their provider. The attendant care program came later to be part of the Social Services system instead of the medical system. This distinction is very important because the person is viewed very differently under each of these systems. Essentially, advocates argued this was a social issue where the person with a disability is seen as needing routine care in the community rather than being viewed under the medical system as being sick and needing to be cured where the problem resides with the person who needs specialized care. In January 1974, Supplemental Security Income (SSI) was implemented. It gave a flat grant to recipients for basic living costs. It did not cover costs for attendant care. Since the ATD program was ending, California was forced to create a new program. The home health industry wanted services provided by contract agencies to insure quality control. Disabled individuals, however, wanted to retain flexibility, control, and independence. They made many visits to the Capitol and stressed the importance of users maintaining full control over their attendants. The new program that was created was called the Homemaker-Chore program which later became In-Home-Supportive Services (IHSS). This program emphasized consumer control. The development of IHSS during the 70s and 80s parallels the rise of the Independent Living Movement. Statewide Independent Living Centers, the World Institute on Disability, and Senior Advocacy Groups were the early supporters and advocates who emphasized the concept of consumer directed services. In 1991, there was a huge budget deficit in California. The World Institute on Disability and the California Foundation for Independent Living Centers (CFILC) advocated that Medicaid funding should be brought into the IHSS program. Their recommendation was adopted. New federal funding was acquired that led to a shift of funding from a Social Services block grant to Medicaid. There were problems for some IHSS recipients who were no longer eligible for Medicaid funding. The State responded by dividing the program into two parts: 1) the Personal Care Services Program for people who were eligible for 50% Medicaid funding, and 2) the IHSS Residual Program for people not eligible for Medicaid funding.
Early advocates recognized flaws in the IHSS program. California was in a state of crisis before Public Authorities emerged and wages increased. People with disabilities and the elderly were unable to find providers to meet their basic needs and to keep providers, both of which are essential to survival. Workers were not available, and the turnover was high and continuous. There were no provisions for emergencies to replace a provider who did not or was not able to show up for their shift. There was also no way to help providers who were looking for jobs and likewise consumers did not have any help in finding providers. .There was no employer of record that would allow IHSS workers to organize for wages above minimum wage. A new approach and improvements in services was clearly needed. We now start to see the beginning of the Public Authority concept for In-Home-Support Services in the late 80s and early 90s. Some counties established work groups and task forces that created the groundwork for change. After some resistance, county board of supervisors supported the move toward change. Throughout this period, a coalition was building between IHSS recipients, IHSS providers, advocates, family and labor with the recognition of linkages between the worker and the consumer. At first, the labor unions wanted to have home nursing registries as the employer of record. After education and advocacy by advocates, the labor unions moved to improve the IHSS independent provider mode and to establish Public Authorities. The labor union faced challenges organizing a fragmented workforce without a work site and high turnover. They were also up against the California Welfare Directors. Consumers were concerned that the unions would only focus on wages and benefits and would ignore consumer concerns. Working together as consumers, providers, advocates and family members, we won the support of a majority of those who originally opposed the Public Authority model. The strategy of this grassroots organizing effort gave rise to the Public Authority model. The Public Authority for IHSS is a public agency whose purpose is to make IHSS work better for consumers and providers. Early advocates conceived the PA as either an independent organization or governed by the local board of supervisors. They also conceived an 11-member, community-based, advisory committee/board that would have a majority of disabled and senior participants to provide input and recommendations to the IHSS program. While AB 1682 was being structured, it seemed doomed to fail. It did not include the Consumer Advisory Committees or Consumer Governing Boards. CFILC and other advocates asked for both IHSS consumer representation on the Advisory Boards, and they wanted for there to be an option for a Governing Board with a majority of IHSS consumers. With foresight, they even saw a separate non-profit, anticipating the day that the Public Authorities could become actual free standing organizations. The consumers, advocates, families and labor pulled together in a unified voice, and to the amazement of many, at the 12th hour, in 1999, AB 1682 became law. AB 1682 mandated an employer of record with an incentive to choose the PA as a mode of service by January 2003. AB 1682 also provided funding for the Advisory Committees to support their role in the Public Authority model. San Mateo, Alameda, and San Francisco were the first Public Authorities in the 1990s. They were the first to negotiate agreements with the Unions representing IHSS providers. In 2000, only eight Public Authorities existed. Today, almost all counties have a Public Authority that has brought many changes. California Association of Public Authorities for IHSS (CAPA) was then created to provide leadership to improve the IHSS program and to promote the interests of its members. CAPA is made up of Public Authority Directors. The following changes have resulted from the creation of Public Authorities: As the employer of record, there is a mechanism for collective bargaining now to improve wages and benefits. Providers receive higher wages and benefits. A registry can help consumers find a provider sooner. Training classes are offered to providers and consumers. Screening providers and conducting background checks have been implemented by some counties for those who want to be on the registry. For the first time, the Advisory Committees/Boards have given a voice to consumers and providers to participate in decisions that directly affect their lives and in how services are provided to consumers. Funding was made available for Advisory Committees to carry out their mandate to advise and make recommendations for improvements to the IHSS program. The California IHSS Consumer Alliance (CICA) is a statewide collaboration of IHSS Public Authority Advisory Committee and Governing Board members. We are newly forming and in the process of seeking 501C3 status. We are seeking to become a non-profit organization for tax purposes. CICA will provide education, information and networking opportunities for members to fulfill their mandate to advise on improvements to the IHSS program. CICA also assists in developing Advisory Committees and Governing Boards to their highest potential.
CONCERNS: Changes looming on the horizon will affect both IHSS and Public Authorities. For example, California is in the process of implementing a Quality Assurance Program. As part of Quality Assurance, SB 1104 requires the California Department of Social Services (CDSS), in collaboration with stakeholders, to develop hourly task guidelines for the IHSS program. The HTG will consist of a “range of time normally required for each supportive service task necessary to ensure the health, safety, and independence of the recipient.” & Welf. & Inst. Code 12301.2(a)(2). Once the regulations adopting the HTG are adopted, social workers are required to use them when assessing individuals’ needs and awarding hours. Welf. & Inst. Code & 12301.2(b). If a recipient needs time above or below the HTG range for a given task, an exception may be made, but the social worker must document the need for the exception. Welf. & Inst. Code & 12301.2(c). There is great concern consumer hours will be reduced because the times allocated for each task will not be realistic and will not meet the consumer’s needs. FUTURE EFFORTS: 1) Efforts are underway to organize the consumer voice through CICA to attempt to educate each other and make recommendations for improvements to the IHSS program. 2) There is a constant real fear that IHSS will take over leadership of the Public Authorities and disregard the law that specifies Public Authorities are to be separate entities with employees who are not part of IHSS or the county. 3) There are efforts in some counties to integrate long-term care needs into programs that can address life-long needs, a program that goes beyond IHSS.
IHSS and PAs are unique in the United States. The history of the programs has involved both State and Federal governments, regulations, and laws. Major changes in program raised fear in recipients as to how their lives would be affected. The establishment of Public Authorities, Advisory Committees, and Governing Boards is the first time improvements have been made to the IHSS program in decades. People have worked long and hard to make these important changes. There is still much work to be done, however, to make this program the best it can be for addressing long-term care needs. We must all remain constantly vigilant to proposed changes. * During preparation of this article, we have relied on other peoples memories to refresh our own memories. We draw heavily on previous work by John Chan, Frances Gracechild, Bud Sayles, Patricia Yeager, and Hale Zukas for discussions and their writings on which parts of this presentation have been based. We must, however, take the full responsibility for any errors and omissions.
1. Nancy Seyden
Acting Executive Vice-President CICA. Chair Yolo County IHSS Advisory Committee. Research Associate, Research & Training Center in Neuromuscular Diseases, Department of Physical Medicine and Rehabilitation, University of California, Davis. Has been a recipient of IHSS services and predecessor programs since 1967. Assistance from the program has made it possible for her to live independently in the community for 40 years, pursue a college education, and be employed for the last thirty years. She has lived the history.
2. Bob Robert
Co-Vice Chair of Northern CA of CICA and Webmaster of the CICA webpage. Vice Chair of the IHSS Public Authority of Marin. President of the Marin IHSS Coalition. Board member of Blind and Visually Impaired of Marin. Board member of Marin Homes for Independence. Chair of the County of Marin Access Appeals Board. Aauthor and webmaster of www.quickmatch.org. A founding member of Marin CIL and Executive Director of Marin CIL. He has been a past IHSS provider.
SUBJECT: ARMS OF GOD et al. vs EDMUND G. BROWN JR. - All County Letter: 79--38; June 15, 1979