There’s a simple and harsh truth when it comes to serving people with disabilities: If you cut services that allow them to live in the most integrated setting, you will eventually force them into more institutionalized settings. This, in turn, will cost the state more money.
It is well documented that services in the community are cost-effective and, over time, save the state considerable dollars. According to a North Carolina Institute of Medicine Task Force, it costs on average 38 percent more each year in county, state and federal dollars to pay for someone to live in an institution like an adult care home than to pay for someone to live in the community.
We need only look at neighboring states to see both the cost benefits of community services and the consequences to a state with an institutional bias. In Tennessee, the state’s mental health office created more than 9,000 housing options for persons with disabilities in the last ten years. In contrast, North Carolina with 30% more residents has developed a third fewer options. Instead, we rely on institutional settings rather than developing services and supports – including community-based housing. Not only is this bad policy, it’s against the law – which brings us to Georgia.
The Americans with Disabilities Act (ADA) was passed in 1990 and bans discrimination on the basis of disability. Nine years later in a case filed against the Georgia Department of Human Resources, the U.S. Supreme Court ruled in Olmstead v. L.C. that people who live in institutions like state hospitals and nursing and adult care homes have a civil right to receive their care at home if they could live on their own with services and support. Last fall, Georgia avoided going to back to court a second time, this time with the U.S. Department of Justice (DOJ), over the state’s failure to live up to the terms of the Olmstead decision. The state agreed to spend $77 million over the next two years to set up new programs to help people with mental illness and intellectual disabilities get services in more integrated settings.
So what is the difference between an institution – like a state hospital or an adult care home – and more integrated settings in the community? In an institution, schedules are determined by staffing needs. Residents typically eat meals at the same time every day. They have limited choice. Freedom of movement is restricted. Decisions are frequently made on the behalf of residents – what they eat, how much, etc. Residents don’t get to pick who they live with; roommates are assigned. Personal relationships are often restricted or controlled. There is little privacy. Rules by their very nature are developed for the majority and not the individual. Decisions are based on what is best for the most people and the ability of staff to manage the residents. Though obviously different, these setting bear some resemblance to incarceration.
In more integrated settings, schedules are driven by individual need and preference. Independent living skills are developed – individuals learn how to shop and cook and get to decide what to eat and when. If the individual doesn’t want to go out (or feel up to going out) on a particular day, then the trip can be re-scheduled. Decisions can be based on preferences. Individuals have more choice about who they live with and what goes on in their personal space. In short, individuals have more control over their own lives.
An integrated setting does not separate people from community life but includes them in it.
The ADA says that states must develop a system of care that doesn’t rely on institutions. Unfortunately, North Carolina has not complied with this requirement. Instead, it has relied and continues to rely on institutional settings like adult care homes and has failed to develop community housing options. This violates the ADA and that’s why the nonprofit I direct, Disability Rights NC, filed a complaint with the United States Department of Justice last July. In November, the Department notified North Carolina that it would investigate. We’re hoping that if the General Assembly hasn’t heard the message that community services save money, they’ll pay attention to what happened in Georgia.
Fortunately, it looks like Governor Perdue is paying attention. Her proposed 2012 budget would spare mental health services from severe cuts and include $75 million for the Mental Health Trust Fund. Of course, even if the General Assembly were to appropriate a similar amount (something that looks increasingly unlikely given the current bleak budget outlook) there is no guarantee that such funds would be used to develop support housing options or other direct services. Let’s hope that both Governor and the General Assembly can read the writing on the wall and do the right thing.
Vicki Smith is the Executive Director of Disability Rights North Carolina.