Dohn Hoyle, President of the Arc of Michigan joined Community Access staff on Thursday, September 13th 2012 on Staff Renewal Day. For about an hour, Mr. Hoyle had a candid conversation with CAU staff about the progress that has been made in the disability field, as well as the strides that have yet to be taken.
Mr. Hoyle opened his presentation with a quote from Thurgood Marshall noting that the degradation and segregation of those with disabilities rivals, if not parallels, the discrimination endured during the civil rights movement. Opening with this quote was powerful for staff, allowing individuals to realize the supports journey from institution to home. Hoyle then proceeded with recognition of the Americans with Disabilities Act that henceforth ensured that the segregation of people with disabilities is illegal and that despite these measures, barriers between the disability community and society still exist.
In lieu of the gaps in supports and services provided to the disability community, Mr. Hoyle offered a solution to the historical segregation of the disability community: integration. Hoyle asserted to staff that it was only through full integration into community, relationships, and independent lives that persons with disabilities can maximize their capabilities and live outside the shadow of their disability.
In his own state of Michigan, Dohn Hoyle noted that only recently have residents adopted a “person-centered planning” approach to supports. Taking the staff through the models of support, he noted the movement from institution to group home, to smaller group home. This process, despite appearing as a more “human” approach to supports, in reality was the same model stamped upon a variety of residences. The change, for Dohn Hoyle and the state of Michigan, came to human services by viewing people (those with and without disabilities) as our equal citizens. The ability to look at people with disabilities, not as community dollars, but only as people – Hoyle stated – is changing the face of the services the state and organizations provide.
First, he noted that people have the right to a dual diagnosis. Dohn Hoyle declared “just because a person has a developmental disability does not mean they are incapable of having a mental illness – the supports should not be exclusive to one aspect of their need base.” In laymen’s terms, because a person wears reading glasses does not mean that they do not have dental needs as well. Persons with disabilities are entitled to the treatment specific to their condition.
Secondly, the waiting list perpetuates inequality. For Hoyle, the waiting list creates two classes of people – those with, and those without services. Distinguishing between these two types of people, again, is unjust.
That being said, Hoyle spoke of the future of human services for the disability community. Displayed neatly in a chart behind his podium, Dohn pointed out the progressive decrease in funding with an increasing demand. The inverse relationship, he noted, between funding and population served is demanding innovation and a uniquely person-centered approach to providing supports. Serving the disability community is going to be a question of individual preference rather than assumed needs.
“Persons with developmental disabilities should not have ‘targeted services’” Hoyle said, “[targeted services] means that the person with a disability loses their obligation to ask for preferences.”
One of the most important components to the future of disability services is the concept of personal autonomy. Hoyle hopes that the number of persons with guardianship will be reduced – putting an emphasis on the individual. Equally, Hoyle stressed the importance of making the individuals with disabilities aware of their own budgets and aware of how much money is being spent on them. With that in mind, Hoyle hopes to see a continued declined in licensed homes and an increase in independent home ownership. For Hoyle, the right to own a home is an essential component to independence, alongside honoring individual preferences and budget control.
The most important point of Mr. Hoyle speech, however, was the emphasis on quality of life. Hoyle reiterated and emphasized to staff the need for meaningful relationships in the lives of persons with disabilities as well as in their personal lives. “People with disabilities need persons in their lives who are unpaid, who can provide a variety and array of relationships, just as in our own lives… in the same way that we experience relationships with coworkers, friends, family and significant others, people with disabilities need that, too,” Hoyle stated. He continued with the idea that what is deemed “good” in the field of intellectual and developmental disabilities is professionally controlled, which, in turn strips individuals of their rights through institutions such as guardianship.
Guardianship, to Hoyle, is his greatest point of contention within the intellectual/developmental disability field. The ability in the I/DD field to exercise power over another person both inhibits the individuals quality of life and limits the constitutions rights of that individual. Hoyle was quick to point out that “prisoners have more rights than people with guardians,” and highlighted a profound quote that notes that individuals who have the right kind of support will not be “incompetent but rather have ‘assisted competence.’” He then continued “all individuals have a preference, regardless of whether they can articulate that verbally. It is our responsibility to honor that preference and give individuals control over their lives.” Mr. Hoyle then affirmed that is the responsibility of staff to recognize the preferences of those they support, whether or not their form of communication is traditional or non-traditional.
Independence, for all individuals, means participating and working within that person’s skill-set, not seeking success in their weakest areas. Hoyle left the staff with this analogy: “if you are a student and math is your weakest subject, it would be cruel for a university to force you to become an engineer – the same can be said for the disability community and their strengths and weaknesses.” Hoyle asserts that each individual has a “unique contribution to add to a community,” and the historical segregation of those with disabilities hinders the realization of each community’s fullest capabilities.
Ultimately, Mr. Hoyle left the Community Access Staff to reflect upon how they can best serve those with disabilities, by rhetorically asking “For all of us, especially those who make their living on the backs of persons with disabilities, what is our obligation to our fellow citizens who happen to have a disability?”