Personal Care for People with Disabilities Through the Decades: A History of the Evolution of the Consumer Directed Model for Care
Pre-1970s – Widespread Exclusion of People with Disabilities
- The possession of a disability was widely equated with the need for institutionalized care, especially for individuals without significant family support systems in place. Independent living as a disabled person was not thought to be possible.
1945-1970 – Assistance for Veterans
- The US Department of Veterans Affairs instituted a program for disabled veterans to hire personal attendants to help them with day-to-day activities.
1953 – Rancho Los Amigos Medical Center in Los Angeles
- In an effort to minimize costs, this California medical center hired personal assistants for 158 iron lung users, and paid $10/day as it was cheaper than inpatient care which cost $37/day
- In 1973, this program developed into the California In-Home Support Services Program
1960-1970s – Independent Living Movement
- People with disabilities pushed for equal involvement in society and mainstream events. Nursing homes and institutions were unnecessary and expensive, but no other options existed in the form of personal care services. The help needed was on a basic level, but no formal organization existed for facilitation of services and caregivers.
1960 – UC Berkeley Self-directed Program
- Small programs sprang up as the Independent Living Movement gained traction. Ed Roberts and other disability rights activists began small self-directed care programs around the country.
1972 – Center for Independent Living
- The CIL began at the University of California at Berkeley campus, founded by Ed Roberts, Hale Zukas, and Jan McEwan. The center made all of academic and social life on campus accessible to all students.
1973 – Rehabilitation Act of 1973
- The Rehabilitation Services Administration was established to provide grants for Independent Living Centers, vocational rehabilitation, personal care assistance, as well as disability supportive employment services. This legislation represented a big push for civil rights for people with disabilities.
- This was later replaced by the Americans with Disabilities Act in 1990.
1981 – Omnibus Budget Reconciliation Act
- Home and Community Based Services are permitted as an alternative to institutionalized care under the 1915(c) waivers, covered by Medicaid. Section 1115 waivers operated to waive service and eligibility requirements to allow the development of demonstration projects.
1985 – Non-Medicaid Eligible Program
- This was the first self-directed care program in Missouri and was created so that disabled people could become employed without having to spend all their time on daily tasks. Through the Department of Vocational and Rehabilitation Services, the state funded personal care attendants for eligible members.
1990 – Americans with Disabilities Act
- This legislation prohibited the discrimination against people with disabilities in any setting, including public accommodations, schools, miscellaneous provisions, and areas of employment.
1992 – Clinton Administration Task Force on Health Care Reform
- This reform included a self-directed care option, as well as establishing the National Institute on Consumer Directed Long Term Services
1993 – Personal Assistance Services (PAS) Program
- Under the oversight of Vocational Rehabilitation, this program was created in Missouri for disabled persons to hire their own attendant and direct their own care; this lead to the opportunity for these people to lead more active lives, while also providing a cheaper alternative to nursing home care.
1995 – New Programs for Disabled Person Empowerment
- Self-Determination Program: this program was specifically for people with intellectual and developmental disabilities, and 18 states received grants to begin their own self-directed care programs
- Independent Choices Program: this program was specifically for seniors and young people with disabilities
1997 – Balanced Budget Act
- In a large advancement for self-determination and community engagement for disabled people, Medicaid Buy-In permitted states to cover people with disabilities to work without losing their Medicaid benefits. The states were also allowed to cover habilitation services in institutional and home settings.
1998 – The Robert Woods Johnson Foundation (RWJF) and Health and Human Services (HSS) Partner Up
- Together these programs launched the Cash and Counseling Demonstration Program which reduced the unmet needs of Medicaid participants in need of PAS and improved their quality of life. Demonstration patients received more of the care they were authorized to receive, and institutional costs for Medicaid were reduced.
1999 – Supreme Court Case: Olmstead v. L.C.
- The Court granted disabled people the right to live in communities rather than institutions, and pressured states to find alternatives to nursing home care for these people.
1999 – Ticket-to-Work and Work Incentives Improvement Act
- Benefits planning and assistance was provided for states to allow coverage for people with disabilities who are employed and might otherwise lose their Medicaid or Medicare coverage.
2000 – National Family Caregiver Support Program
- This program covered care by informal family caregivers, including assistance with counseling services, caregiver training, respite care, and some supplemental services for members.
- This required an update of the Older Americans Act of 1965
2000 – Missouri Independent Living Waiver (ILW) Instituted
- The ILW allowed for a greater number of assistance hours, as well as the purchasing of medical equipment and environmental accessibility adaptations.
2001 – New Freedom Initiative
- The Independence Plus Program and Real Choice Systems Change/Aging and Disability Resources Center Grants were both included in this initiative, which funded disabled people to engage in their respective communities more easily.
2005 – Deficit Reduction Act (DRA)
- A competitive grant program was founded to further push states towards instituting home and community-based care for people with disabilities. A higher matching rate was provided for non-institutional care services, and more types of expenditures were covered.
2005 – Department of Health and Senior Services in Missouri renames PAS as the Consumer Directed Services (CDS) Program
- Anyone is allowed a contract to apply to be a CDS vendor.
2015 – Emerest Consumer Directed Services opens and begins serving hundreds of patients across the state of Missouri
Present Day – There are over 30,000 people enrolled in CDS in the state of Missouri.