During the 18th 19th and most of the 20th century in the standard of care for helping persons with serious mental illness or intellectual and developmental disabilities in the US (to the extent there was any help at all), was institutionalization.
People were often separated from their families & communities and sent to state-operated facilities (like the Arizona State Hospital) for most of their lives. Those institutions often had limited healthcare and few opportunities to have meaningful days etc.
Families were commonly told that institutional placement was the only realistic option. Some did stay with their families, but there was little to no support services or even educational opportunities for most of those decades.
Conditions in many facilities were often bad, with overcrowding, neglect, sometimes even abuse and little personal choice. By 1967, nearly half of the people living in institutions for people with intellectual and developmental disabilities were kids. Super sad.
For people with serious mental illness, care was centered in state psychiatric hospitals, like the Arizona State Hospital.
Deinstitutionalization of persons with a mental illness began slowly in the 1950s and 1960s, driven by better and new medications, changing treatment philosophies and by court decisions that compelled the development of community mental-health programs.
Over those decades (1950s and 1960s) many states closed mental hospitals but at the same time didn’t build the community supports like residential living arrangements, outpatient treatment, crisis services and intensive case management.
A major deinstitutional turning point came with the Rehabilitation Act of 1973. That federal law recognized the institutional model as a violation of civil rights and liberties issue. After that law came into effect, Medicaid agencies couldn’t use federal funds if they excluded or segregated people because of their disabilities.
The 1974 Rehabilitation Act didn’t pay for community services, but it set the stage for Medicaid to start using a community-based care model… what we now call Home and Community-Based Services.
Beginning in 1983, states could use Medicaid money for those kinds of community supports (e.g. providing services in family homes, apartments, supported-living arrangements and small group homes rather than institutions).
Note: Arizona was the last state to implement Medicaid (in 1982). All other states implemented Medicaid in the late 1960s.
The Watershed Moment
The 1999 Supreme Court decision in Olmstead v. L.C. is what really changed the landscape. The court held that unjustified institutional segregation constitutes discrimination under the Americans with Disabilities Act. That gave the 1974 Rehabilitation Act more teeth.
Olmstead didn’t compel (or pay for) community-based care, but it gave people with disabilities (both mental and developmental) a way to compel states to change their Medicaid treatment and care model to a more therapeutic and community-based model.
Arizona was the last state to join Medicaid, launching AHCCCS in 1982 several years after the Rehabilitation Act and just as Medicaid HCBS waivers were becoming available (but many years before the Olmstead decision).
AHCCCS 101 (Part 1 of 4): AHCCCS’ Origin Story – Why Arizona Built Medicaid Different
Arizona built much of its Medicaid system during an era when community living was already mostly established. Arizona still had institutions (ICFMR’s – I won’t define the acronym because it’s disgusting) and the AZ State Hospital.
But, because we weren’t financially and operationally tied to a Medicaid-funded institutional structure like most other states were, Arizona’s transition from institutional care to residential/community care wasn’t as rocky as it was in other states.
Arizona’s mental health system was also shaped by the Arnold v. Sarn lawsuit (filed in 1981) which found that the state had failed to provide the comprehensive community mental-health system required by Arizona law.
Arizona’s late arrival to Medicaid was usually considered a disadvantage, and our late adoption of Medicaid came with tragic human costs… but it also allowed AZ to avoid the hassles that came with fighting care systems to shift from institutional to community care.
The move from institutions to community-based care didn’t happen fast, and it wasn’t easy. It took decades of advocacy, lawsuits, changes in federal law and new Medicaid policies to establish the idea that people with disabilities should be able to live, work and receive services in their own communities.
Arizona benefited from building much of its Medicaid system after that approach had already begun to take hold. Community-based care still depends on adequate funding, a stable workforce, available housing and continued enforcement of the civil-rights protections that helped make the change possible.
In my next piece we’ll explore how the Trump Administration is moving the turn the clock back on community supports toward institutionalization.
