About peeraction

The Peer Action Alliance is a community of peers organized to advocate for equal access and inclusion of individuals with disabilities

The IL Model vs Business Model

What has changed in Michigan IL services over the
last twenty-five years?

by Darma J. Canter

Money and the decisions that flow from putting an entity’s business success over the well-being of the disabled they are contracted to serve. Large increases in core funding with contracted service relationships with other publicly funded entities has elevated Michigan Centers for Independent Living (CILs) and their administrators to CEOs with soaring compensation packages. Between 2008 and 2017, Michigan households with a working-age disabled member had a 25% increase ib income, $31,000 to $41,000. In 2017 28% of disabled in Michigan lived in poverty. A CIL Director’s salary changed from $50,000 to $90,000 in 2019, nearly 200%, in comparison to disabled income. It represents the elevation of IL leaders to a position superior to the consumers they serve and suggests their voice is not our voice.

Non-disabled professionals have taken over leadership in Michigan’s Independent Living (IL) Program and re-oriented Centers to a corporate model focusing on expanded revenues and partnerships with the systems that segregate and exploit the disabled. Many CILs present themselves as independent, private corporations and assert they are not subject to transparency laws like the Open Meetings Act and FOIA, even when they are 90-98% funded with taxpayer dollars. The Client Assistance Program provider, Michigan Protection & Advocacy Services, has refused to pursue consumer complaints about IL services and cannot or will not provide information about IL grievances and appeals. IL consumer rights processes have nullified. This must be corrected and our rights restored.

Michigan Centers grew out of the local disability community and for many years staff and volunteers advocated for access and inclusion. The Center and staff were allied with disabled community members and shared a vision of social and political change. Over time, Michigan Centers were revised from organizations with boards elected from the membership to boards of appointed directors with their connections to service agencies and influence in the political process; the Centers disengaged from the disability community and enrolled in the local Chamber of Commerce. One day I looked up and our Centers for Independent Living were paying dues to the Association of Rehabilitation Organizations, which specifically lobbies for sheltered workshops.

As Michigan’s IL Network has mutated from a leader in disability empowerment and advocacy to a corporation providing services, our Centers assumed their place alongside Goodwill, Peckham, AFCs, MRS, CMH, and Special Ed. How many programs, case managers, guardians, and payees does a disabled youth need to be self-determined?

Independent Living philosophy assumes the right of every disabled person to be autonomous decision makers. Independence doesn’t mean I don’t need services and supports, but it does mean I am the person with the rewards or consequences of my actions. I will always need some level of assistance and connections to public programs and their agents, which interferes with my independence and autonomy. It has always been easier, faster, cheaper to let the agents act on my behalf, which separates me from the satisfaction and pride of accomplishment as well as the opportunity to learn from my mistakes. Too many youth with significant disabilities are taught to be cooperative, compliant and grateful; and are in fact denied access to all the incentives for growth and independence.

Michigan consumers must reform the IL Network and restore consumer-control, rooted in the local disability community’s values and priorities, and re-imagine the IL service model of peer-delivered self-help and empowerment.

Please read and comment to build a common language and consensus.

IL Language to Guide Empowerment Is Vulnerable to Misuse

by Darma Canter

The benefit of disability identity and culture is counterbalance to the stereotype of disability that perceives us as inferior, less than the non-disabled peer. We refer to that perception as “ableism”. Society has interpreted significant mental or physical differences as undesirable, incapable, unequal, unimportant and treated the disabled as dependent and even a burden. Some differences are observable and some are not, but if a teacher, doctor or parent has labeled you as disabled then you are not deemed worthy; your place in the family or community is diminished. The social model of disability teaches us that “people who have disabilities are more harmed and hampered by discrimination and physical barriers in the community than by their actual bodily impairments”.

In the 1970s, Independent Living leaders used the term consumer in the same way Ralph Nader used it to mean decision-maker. Individuals with disabilities intended to position themselves as informed consumers, directing services and choosing products specific to their individuals goals. Consumers have rights and responsibilities and are ready to be active participants with agencies and service providers to build and maintain a full life in the community. No small step, Independent Living philosophy changed the way we feel about ourselves; we are not our diagnosis, we are not objects to be acted upon, not a social experiment. We are entitled to own our personal hopes and dreams. For my generation, it was liberation from an oppressive social bias, and told a counter-narrative that equated disability and self-worth.

In typical fashion, the swollen disability services business responded to the consumer movement by conflating ‘consumer’ with someone who uses their services. Rather than acknowledge the intended shift in power described in the legislation, agencies adopted  term, but used it as a substitute for ‘client / patient’ and ignored the implied partnership.

Legislation used the term consumer to address the intended shift in decision-making and the power of consumer control to transform the service delivery model. IL funding mandated the Centers for Independent Living (CILs) would be operated by disabled people who deal with ableism, and live with discrimination. The law says the State Plan for Independent Living is written by the Statewide Independent Living council (SILC) and its consumer majority. The concept of consumer control is used to give power and authority to the people who experience the problem and design the solution. Independent Living and the disability rights movement were grassroots political movements by and for people with disabilities. Who could think in a decade the distinction between disabled and non-disabled would evaporate… but not in the way intended. 

Today in Michigan’s Independent Living Program, “everyone has a disability” and every medical condition is disabling. Disability identity as a lived experience is devalued, nullified, and irrelevant. What was once grassroots activism impassioned by our shared experience has been converted to a non-profit service delivery business operated by professionals. Yes, some of the professionals have disabilities, but their disabilities are second to their identity as social workers, employment councilors, business managers and members of the chamber of commerce. Changing policies or practices in the community isn’t fueled by their personal oppression or subjugation; it is rather more an academic issue to study and profit from.  

All the civil rights legislation and the policy changes in disability programs and services occurred between 1970 and 1995 when the disability community drove a social agenda to end discrimination. As the movement gained recognition and secured federal and state funding for peer-run programs, it became an advantage in some situations to claim a disability.

We are experiencing a period when many disabled don’t see themselves as represented in the movement. What does it mean to describe yourself as ‘disabled’ in a medical model vs. a social model? Who has the right to call themselves a consumer? How can the IL movement claim to represent a cross-disability, justice agenda if it continues to be led by business professionals who aren’t motivated by the experience of discrimination?

I am going to think through this dynamic over the next few weeks and I hope you will comment or offer alternative perspectives to the discussion.

On the Road to Justice – Betrayal

Why .. after spending the last year trying to engage with the City of Muskegon – why did the City Commissioners approve an agreement with Disability Network West Michigan (DNWM) to represent Muskegon residents and visitors with disabilities and to guide the City in meeting the “minimum” requirements in the ADA?

Do you believe corporations are people? Is it possible for a corporation to represent a minority community? Should a non-disabled corporate employee speak for disabled residents? The idea is in conflict with the Independent Living philosophy mandated in DNWN’s federal funding.

Elected officials and public employees often ask why minorities perceive prejudice and discrimination, because in their hearts they believe they are not racist, not sexist, not ableist, not ageist. Even when a person experiencing minority status tells you they experience inequality, you can’t agree with what they are telling you, because you are not an “-ist.” How do you change something you can’t see, feel, hear, touch?

What’s wrong with this picture?

“Muskegon City Commission Worksession Chambers

August 12, 2019, MINUTES (PDF):

Present: Mayor Gawron, Vice-Mayor Hood (arrived 5:36), Commissioners Turnquist, Johnson, and German

Absent: Commissioners Rinsema-Sybenga and Warren

Disability Network of West Michigan – Brad Hastings, Presentation information to the City Commission regarding a proposed cooperation agreement. DNWM will help the City and its customers to meet the minimum requirements of the Construction Coded and the ADA and continue to education and influence toward implementing new best practices that incorporate Universal Design concepts. This will be accomplished by providing training and technical assistance to City staff and its customers. This work is aimed at increasing the inclusiveness and accessibility of our built environment and realizing the ultimate vision of access for all, regardless of ability…”

On the surface this ‘agreement’ sounds like it is a positive for the thousands of disabled residents in Muskegon. But in fact, it is a continuation of the prejudice and discrimination the disability community typically experiences in local government.

  1. DNWM is a corporate actor and Mr. Hastings is NOT a disabled person. He does not experience exclusion or inequality and he is not qualified to represent people who do.
  2. The work itself is important, but is he the most qualified person to do the work? Did the city solicit a proposal from a pre-determined provider, or did they put out a public request for proposals? Was the opportunity to contract with the city fairly offered to qualified people, or did it just go to a corporate representative of the chamber?

Twenty nine years of federal mandates to build disability-friendly cities and yet Muskegon’s central city has been torn down and re-built without the essential accessibility features. Should I be satisfied when the City of Muskegon hires a non-disabled adviser to create disability access? WTF.

We’re Back, with Trophies!

After a brief hiatus, Peer Action Alliance is back online at www.peeractionalliance.com.

Here are a few recent accomplishments:

  • The former Executive Director of Disability Network Blue Water Center for Independent Living (BWCIL) in Port Huron who tried to extort $75,000 from consumers has left or been removed from his position.
  • A convicted embezzler who was serving as the accountant for BWCIL and the Michigan Statewide Independent Living Council (SILC) was apprehended and is currently facing new charges of embezzlement.
  • Three SILC Council members were removed from their posts for exceeding their term limits.
  • The federal government informed the SILC that it cannot use its shell corporation to avoid its responsibilities under FOIA and the Open Meetings Act.
  • The former Executive Director of Disability Network West Michigan, which threatened us repeatedly, has left or been removed from her position. Unfortunately, the new Executive Director has chosen the same path and we continue to be excluded from the design and delivery of Independent Living services in Muskegon.
  • The former Executive Director of the SILC has fled to a civil service position within state government. Unfortunately, he will still be able to wreak significant havoc from his new position overseeing Michigan’s Centers for Independent Living at the state level.

We still have significant work to do. We must reform Michigan’s 15 Centers for Independent Living by:

  • Restoring consumer control and making sure every Michigan CIL is closely connected to and driven by the advocacy priorities identified by local disability communities, which are incredibly diverse.
  • Bringing Michigan CILs into full compliance with state and federal law, as well as all taxpayer-funded contract requirements and internal policies and procedures.
  • Ensuring that every Michigan Center for Independent Living is providing Independent Living Plans and the core services required by law, specifically Individual and Systems Advocacy, Peer Support, and Independent Living Skills Training.
  • Educating Michigan CIL staff and board members on Independent Living history and philosophy, as well as state and federal law relating to America’s Independent Living Program.
  • Implementing affirmative action policies as required by federal law.
  • Ensuring that all Michigan CIL board meetings are open to the public.

Yes, the Penguin Project Is Ableist.

This Fall, the Penguin Project is coming to Muskegon. Local children and young adults with disabilities will be cast in a production of the musical “Annie, Jr.” that will run October 14 and 15, 2017 at the Frauenthal.

The Penguin Project describes itself as follows:

“The Penguin Project is a musical theater production that casts children and young adults with disabilities in all roles. All will sing, dance and act in the show. Those individuals (Artists) will get assistance from on-stage peers (Mentors). Who can participate? Artists are children and young adults (ages 10-22) with disabilities. Including (but not limited to) Down Syndrome, cerebral palsy, autism, intellectual disabilities, learning disabilities, visual impairment, hearing impairment and neurological disorders. Mentors are children and young adults (ages 10-22) who do not have disabilities. They will be matched with an artist of similar age and the two will work side-by-side.”

Text: It's called the Penguin Project because penguins can’t fly. Get it? Image: A confused penguin with a speech bubble that says "I use my wings for swimming and diving. I don’t need to change to meet your arbitrary definition of success.” #saynotoableismWhat is the reason that a person with a disability cannot be a mentor?

The disabled actors will be matched with “mentors,” who are specifically defined as non-disabled people. There is only one reason that people with disabilities cannot be a mentor: ableism.

The Penguin Project defeats its own goal by teaching children with disabilities that non-disabled people are their superiors, not their equals. They are being allowed to participate in an activity as long as they accept their role as a recipient of charity needing to be mentored by non-disabled people. That’s not what we want our kids to learn.  Continue reading

Letter to the Inspector General Calling for An Immediate Audit of the Independent Living Administration

The Honorable Daniel R. Levinson
US Department of Health and Human Services
Office of Inspector General
ATTN: OIG HOTLINE OPERATIONS
PO Box 23489
Washington, DC 20026

Dear Inspector General Levinson,

We are writing to request that the Department of Health and Human Services, Office of the Inspector General (OIG) conduct an audit of the Independent Living Program and the legal oversight responsibilities being neglected by the Independent Living Administration (ILA) within the Administration for Community Living (ACL), specifically in regard to contractor and grantee compliance with the laws governing America’s Independent Living Program.  Continue reading