August 16, 2011
There was a time in Michigan when if you were born with a severe disability you were likely to be institutionalized for the rest of your life. Doctors told parents that institutional care was the best option and discouraged family involvement because it would “confuse” the child and hinder treatment.
It was a life sentence: your freedom to live a productive life with your family and friends, attend a neighborhood school and make decisions for yourself, with trusted assistance when needed, were just some of the rights that were stripped from you.
It was a costly policy from both a human development and tax expenditure perspective. The cost of “care” in a state institution far outstripped the life of opportunities that came from being able to participate fully in one’s community.
Ray Schuholz knows the human cost all too well. “I lost three and a half years of my life in a state institution,” the former Plymouth Center resident recalls with tears welling in his eyes.
Today, however, his smile illuminates the room as he reflects on his new “freedom” after moving from a state institution to a group home to now living in his own home and working as a peer mentor advocate (a person with a disability who is employed to perform training, advocacy and help others navigate the system). “Joy, freedom, I am living my life!” he exclaims.
Today, because of the work of parents, advocates, enlightened governors, investigative journalists and supportive legislators, Michigan is one of only a handful of states — and by far the largest — to have closed all state institutions for persons with developmental disabilities.
There were some 12,000 persons with developmental disabilities in 13 state institutions back in the mid to late 1970s. The last facility, in Mt. Pleasant, was closed in 2010.
This policy decision is morally right and fiscally sound. The lives of individuals with developmental disabilities and their families have been enriched and our communities strengthened, all at less cost to taxpayers — a true win-win for all.
And the celebration is not just in the closure of these large, inhumane “warehouses.” We should be proud as a state that Michigan, to a far greater extent than any other state or nation, has worked to integrate persons with disabilities into their communities.
While advocates celebrate the closure of state institutions, however, they also point out that we still have a long way to go to fully integrate persons with disabilities and enable them to have the type of life to which everyone in the community can aspire. Dohn Hoyle, executive director of the statewide parent/advocacy group Michigan-ARC and someone who has spent a lifetime advocating for persons with disabilities, can fire off the statistics of how many people are still trapped in “community institutions.”
“The ARC believes there is much, much left to do to provide full rights to people with disabilities in Michigan and across America,” Hoyle said. “Today, while some are patting themselves on the back, thousands of people with disabilities are inappropriately ‘housed’ in nursing homes, group homes and in large congregate living facilities.”
Michigan’s system of support for persons with disabilities has evolved, weaving together coalitions built across political lines and engaging parents, the news media, the legal community and persons with disabilities to “educate” and, when necessary, cajole multiple governors and legislative bodies into action.
Although all the institutions have been closed, there is a continued need for vigilance to ensure Michigan does not slip backwards.
Simply living in the community in a provider-centered and institution-like arrangement, instead of a person-centered and home-like environment, is contrary to the freedoms and rights all Americans expect. As a state, we need to be cautious we don’t simply re-establish the former institutions in a new community form.
Poet and philosopher George Santayana is credited with saying, “Those who cannot remember the past are condemned to repeat it.” During these tough economic times, when governmental bodies are seeking ways to scale back, there are whispers — and fears — that “money can be saved” by returning persons with disabilities to larger congregate facilities. This would be morally wrong and fiscally unsound.
One way that Michigan has taken deinstitutionalization and community integration to a higher level is through a concept of “self-determination.” The Michigan Department of Community Health defines self-determination as “a set of concepts and values which underscore a core belief that people which require support from the public aging or behavioral health system as a result of a disability should have access to meaningful choices, and control over their lives.”
Tom Nerney, president of the Center for Self-Determination, compliments Michigan on being a leader in embracing the core concepts of self-determination. Nerney sums up self-determination this way, “All people should have freedom, a home, deep human relationships, meaningful work and control over their income and supports.”
Jim Haveman, director of the Department of Community Health under Governor John Engler, was relentless in his thrust to a community-based system of care. I caught up with Haveman recently, and he continues to advocate for persons with disabilities. “Strong parent groups, together with the department of community health and other organizations and agencies, need to work hard to continue the cadence toward self determination and independent living,” he said.
The transition from institutional care to community care in Michigan began with Governor William Milliken, “Mr. Human Decency.” It has been carried forward and strengthened by each successive governor, Republican and Democratic alike.
It was Gov. Milliken, with his appointment of C. Patrick Babcock as the director of the then state mental health system, that set Michigan on a course to be a leader in reintegrating persons with disabilities back into their communities. Babcock, who continued on with Governor James Blanchard, knew how to harness the anger of parents and work with legislative allies to develop legislation and, more importantly, to secure appropriations necessary to turn policy into positive action.
Clearly, the path “from out of sight, out of mind” state institutional care to integrated community living is not without its challenges.
Elmer Cerano, executive director of Michigan Protection and Advocacy Service, echoes many of the sentiments of Hoyle that Michigan can take pride in the closure of its institutions yet still has much work to do.
In fact, Cerano fears history is repeating itself. More and more, he says, he’s hearing the same rationale that was used to maintain large state institutions back in the 1970s and ’80s: “They can be with their friends,” “They would be safer,” “We can build an activity center right on the grounds.” “There is a movement,” he says, of parents who want to “build segregated villages for their adult children with intellectual disabilities.”
Cerano strongly opposes such a move. “We must not place limits on the human potential of people with disabilities…Remember, it was professionals and politicians only a short generation ago who gave a life sentence, in a state institution, to people born with a disability.” He pleads, “We must not allow the 21st century [professionals and politicians] to hold back the full potential of people with disabilities.”
Andre Robinson, an outspoken advocate, peer mentor and consumer member of the Michigan Developmental Disabilities Council, says, “I have been blessed to taste the dignity of living my life my way; I beg those with power to make decisions to help us keep our freedom.”
Jim Dehem, president and CEO of Community Living Services, which provides administrative and support coordination for approximately 4,000 persons with developmental disabilities and senior citizens in the metropolitan Detroit area, rejoices in the institutions being closed. He, his staff and the CLS network of providers also take great pride in assisting people to live in their own homes, with whom they choose or with their families, and putting behind them the past system of dependency upon group homes and nursing homes.
“At CLS we are assisting people with disabilities to have authority over their own lives,” says Dehem. “As an organization, we have converted to a model of support rather than a system of professionals, programs and facilities — people should not have to give up their freedom and life because they happen to need support as a result of a disability.” He adds, “We all need the support of others in our lives.”
Edmund Burke, author, political theorist and philosopher, said, “all it takes for evil to triumph is the silence of good men.” Over the years, advocates, parents, friends, the media and concerned elected officials refused to remain silent.
Gov. Milliken is a mentor of sorts to our current “reinvention governor,” Rick Snyder. Perhaps Gov. Snyder will complete the job begun by Milliken by helping fulfill the dreams of Andre Robinson and Ray Schuholz and all the people they advocate.
Today, we see the success of that once new approach in the smiles of people who had been institutionalized and those who never saw the inside of a state institution, who are now living their lives, their way, in their communities. We have witnessed what can happen when good people stand up and speak out.
Michigan has come a long way from the days of banishing people with disabilities to large state institutions. Yet we should never rest on our laurels, thinking the job is done because one evil has been eliminated.
Hoyle sums it up, “Until all people with disabilities have the rights and opportunities preordained to every citizen of this great country, there is work that remains to be done.”