Soon after Ian Ferguson was born, complications from a surgical procedure led to him having multiple disabilities, including cerebral palsy and intellectual disability. Once the severity of his disabilities became apparent, several doctors and social workers recommended to Ian’s parents that their son be institutionalized. However, one social worker strongly encouraged Ian’s parents to resist the advice of the others and consider keeping their son at home with them, using community-based services to provide the educational and other supports needed for him to thrive. It was often a struggle and the community did not always provide the services needed or in the amount that was required.
After what is now called the Individuals with Disabilities Education Act (IDEA) was first signed into law in 1975, Ian and millions of other disabled children were guaranteed a “free, appropriate, public education.” However, that did not guarantee adequate family support in the form of respite care or medical coverage. As an adult, Ian lost the legal protection of the IDEA, and joined a world of wait lists and segregated programs. Residential and vocational supports were either delayed or sometimes available only for those living in large group homes. It was often the shared support, both emotional and material, of other families in similar situations that made the difference. Knowing that others were out there fighting the same battles made the individual struggles more endurable.
As more and more disabled individuals stayed in the community rather than being institutionalized, support services grew and the quality improved. Rather than growing up in an institution with the hope of moving back to the community, Ian and many others with similar disabilities were raised in the community, where services could be embedded from the start to match their needs. Funding strategies for flexible residential supports replaced a one-size-fits-all approach. Programs such as supported employment allowed individuals to move from sheltered workshops to more integrated situations, working side by side with individuals without disabilities. Individuals and families were allowed more of a voice in choosing the types of support they preferred. Person-centered planning replaced automatic placement in programs because of this or that label being applied to a person. Inclusion in the community became the goal for everyone rather than the exception for a few.
Eventually, through the efforts of disability advocacy organizations (The Arc, TASH, PeopleFirst), court cases (Willowbrook, Pennhurst, Olmstead, and others), and legislation at the state and federal level, there are now 14 states in the USA that have closed all of their large, public institutions for persons with developmental disabilities--though some private ones remain open in several states. Today, the population of people in the institutions continues to decline in almost every state.
When the push to move people with intellectual disabilities out of institutions began in the 1970s, it was difficult for some people to imagine how individuals with significant disabilities could ever survive in the community. While continuing to focus on moving people out of institutions, advocates around the country also pushed to shut down or limit new admissions to those facilities. By keeping children from being “put away” in large, congregate care facilities, a critical mass of individuals evolved that created pressure on government departments to develop and expand services that these individuals needed. Once those services existed, advocates could point to disabled individuals making their way in the community and argue that those remaining in the institutions could be just as successful.
By closing down the “pipeline” to the institution, the need for expanded community services became much harder to ignore. Rather than continuing efforts to make the institution better, advocates shifted their efforts toward turning community living into the better alternative in the first place. As the population of institutions shrank, the costs per person became increasingly prohibitive, adding another incentive for officials to expand more cost efficient community alternatives. Advocates pointed to people with even intensive disabilities living successful lives in the community and asked why those with similar disabilities remained incarcerated in institutions.
Phil Ferguson is Ian’s father. He is a member of the Board of Directors of Mobility International USA and is also on the Board of the Community Support Brokerage, a small residential support organization based in Eugene, Oregon. Ian is now 48 years old and loves his life in the community, where he is surrounded by friends and family, and the supports he needs to flourish.