By Darma Canter

Independent Living values have disappeared from Michigan’s Centers for Independent Living. We therefore reassert and stand firmly behind the following truths:

• Independent Living philosophy is grassroots community organizing to confront inequality and exclusion.
• Centers for Independent Living were created to solve a universal disability dilemma: people with disabilities need supports to be independent, but must become dependent on public systems of care in order to access those supports.
• The IL movement was conceived by people who rebelled against the myths and misconceptions surrounding people with disabilities. IL was built by and for the individuals who face a daily fight for dignity and self-respect.

Our History: All over the country, communities of people with significant disabilities formed centers focused on self-help in order to share their knowledge and experience, advocate for change, support the empowerment of their peers, and learn skills to manage their individual supports and services. Four “core” services – funded by Congress – describe the disability community working together as agents of change: advocacy, peer support, information and referral, and independent living skills training. CILs are tasked with changing how we feel about our disability identity: No Pity. No Shame. They are tasked with changing the social assumptions about people with disabilities as less than, powerless. In short, disability rights are civil rights. 

Michiganders with Disabilities March to the Capitol in Lansing circa 1990

My History: I was in my 40s when Independent Living found me, liberated me. IL Centers had been building for twenty years but in the early 1990s the Federal Rehabilitation Act began to fund Centers to “change mainstream society.” I wish I could describe the power and pride palpable in Michigan’s disability community at that time. IL and Centers had a unique vision (consumer-control), with a unique methodology (peer support and empowerment), and were funded for the purpose of advocacy. It was unfathomable. IL was changing the systems that had oppressed us for so long!

So how in God’s name did Michigan Centers become programs and service providers chasing money and working for our oppressors?

Thirty years ago, consumer volunteers played a vital role in delivering core services. There was not much money in IL at that time, but there was a significant amount of people power in the movement. We named ourselves ‘consumers’ – as in informed decision-makers. Disabled advocates won many legislative and regulatory battles, including Section 504 of the Rehabilitation Act, IDEA, the Supreme Court’s Olmstead decision, and the ADA. Now we had their attention. Grants and funding flowed from state and federal government to support the inclusion of people with disabilities. We fought and won.

Medicaid dollars created community living and in-home services, Vocational Rehabilitation dollars were earmarked for supported employment, and an enormous industry grew up around these funding opportunities. Sheltered workshops, also known as “Community Rehabilitation Organizations” or CROs, sprouted up to invent more and more ways to market their services to the state. It’s important to note that these for-profit businesses never marketed their services to the consumers whose benefits funded the supports. Sheltered workshops sold their services to state agencies, which then needed ever more money to keep up with the self-perpetuating demand for so-called community-based supports.

Our precious Centers for Independent Living doubled and tripled their budgets. Now their power and influence was established as equals in the non-profit world of service providers. Within a few years our Center Directors stopped identifying as consumers and they now identify other agencies and their leaders as their peers. At one time, Michigan’s CIL directors and staff looked like the people they served. They shared the same life as experiences as the consumers they served.

Gradually, Michigan’s Centers for Independent Living retreated from their grassroots philosophy to a business model run by a Board of community professionals. They are wholly separate from their foundation in the local disability community. Like a business, they sought revenue streams in the name of improving services with more money and more professionalism. Eventually, Michigan Centers contracted with the Vocational Rehabilitation and the Mental Health system, and have now formed a formal partnership with Michigan’s aggressive sheltered workshops. Our CILs lost all inclination to change the systems that still control, manage, and dictate too many disabled lives.

Our Present: Michigan’s independent living and disability rights movements have been extinguished. The fire is out! Our CILs have banded together as Disability Network/Michigan, which is not accountable to anyone. They do not report to the state or federal government and they have no obligations under the Open Meetings Act or the Freedom of Information Act (FOIA). In a room full of CIL directors, it would be hard to identify any disabled individuals. The leaders and staff of Michigan’s CILs are non-profit professionals with backgrounds in healthcare administration or vocational rehabilitation counseling. They hire non-disabled staff because “there were no qualified applicants with disabilities.” Even the ones who have medical conditions or who count themselves as disabled on their 704 reports never disclose the lessons learned from their disability experience. They are con artists. Elitists. Ableists.

At Pere Marquette, Advocates distribute flyers hold signs supporting consumer control at Disability Network West Michigan (Muskegon’s CIL)

Michigan’s disability community has spent the past 2 years advocating for our CILs to honor their founding legislation and build our state’s IL Program on IL values and philosophy. For all our work, we got nothing. We have repeatedly asked the DSE and state contract manager to enforce the contract. We got nothing. We asked Michigan Protection & Advocacy Services’ Client Assistance Program (CAP) to hold the CILs accountable to the Rehabilitation Act and WIOA. We got nothing.

We have informed the Independent Living Administration (ILA), the newly-created oversight agency for CIL programs within the US Department of Health and Human Services. We’re waiting.

And the dilemma is as always: we have rights to live independently but we depend on systems to implement and enforce the policies and practices that result in people with disabilities living fully and independently.