Muskegon Disability Community Top 10 Advocacy Priorities 2016

Centers for Independent Living are funded by taxpayers and are required by law to lead disability rights advocacy efforts in their community. Unfortunately, Muskegon’s Center for Independent Living, Disability Network West Michigan, is unwilling to do the job it receives three quarters of a million dollars per year to do. Therefore, we present… a draft advocacy agenda for the Muskegon disability community! Does this agenda match your experience? What items or information would you like to see added to this list?

  1. Transform Disability Network West Michigan into a fully functioning Center for Independent Living that is community-based, cross-disability, and consumer controlled.
  • The founders of the Independent Living Movement created fully funded Centers for Independent Living in federal law. Muskegon’s CIL receives approximately $750,000 / year in taxpayer dollars to be comprised of a majority of individuals with significant disabilities; to provide advocacy to individuals experiencing discrimination; and to provide systemic advocacy to proactively address structures that keep Muskegonites with disabilities dependent. We must bring our CIL into compliance with the law in order to successfully organize and take action on any other issue. A fully functioning Center for Independent Living is our greatest potential asset in our work for disability rights.
  1. Eliminate Subminimum wages in Muskegon County.
  • Subminimum wages are a scheme by which a business or organization is legally allowed to pay workers with significant disabilities less than minimum wage (sometimes pennies per hour) in exchange for labor. That labor is then rebranded as work experience and packaged as a service provided to the individual. The business or organization then bills Medicaid, Rehabilitation Services, or another provider for providing the individual the “experience of work”. These individuals rarely move on to integrated employment and can spend decades in back rooms sorting screws into jars or folding used clothes while CEOs walk away with $100,000 / year salaries. We have experienced first-hand that this practice is alive and well in Muskegon and it must be stopped. Unfortunately, our Center for Independent Living currently supports these practices through active membership in the Michigan Association of Rehabilitation Organizations (MARO) and by partnering with MARO members that currently (and proudly) pay subminimum wages to people with disabilities. That means taxpayer dollars are being used to support advocacy for subminimum wages in our community. We must eliminate this outdated and dehumanizing practice immediately.
  1. Create a system that establishes and supports consumer directed Personal Assistance Services.
  • People with significant disabilities rely – literally in many cases – on personal assistance services to survive. Those services, generally funded by Medicaid or other insurance, are often of a very personal nature. We believe that people with significant disabilities can and should control the services provided to them, including the ability to hire and fire attendants. We will create a system that supports consumer control over personal assistance services, as has been modeled by several successful Centers for Independent Living throughout the U.S.
  1. Eradicate employment discrimination.
  • A casual glance at the local want ads reveals a culture that is not prepared to integrate people with disabilities into the workforce. How many job ads have you seen for positions that require the applicant to “have the ability to walk, speak, and hear”? Ninety percent of the time, that requirement has nothing to do with the essential duties listed in the job description. Requiring a valid driver’s license for jobs that do not involve driving is one way commonly used to deny access before a job seeker with a significant disability even applies. We need to educate the community on discrimination in the hiring process as well as the workplace.

  1. Reform guardianship laws and ensure that parents with disabilities are not discriminated against.
  • Currently, many people with significant disabilities in Muskegon are placed under unnecessary full guardianship by the Courts without being fully informed about their rights. They are often surprised to learn that they no longer have the right to vote or marry and that revoking full guardianship can be a long, expensive, and trying endeavor. People with significant disabilities are discriminated against routinely in custody cases and without a functioning Center for Independent Living, they have no one who understands the law to stand with them in a biased system.
  1. Access
  • A settlement between the US Department of Justice and the City of Muskegon was reached in 2010 and lasts five years. Under the settlement, the City agreed to make its services and programming fully accessible. Unfortunately, Muskegon polling places, parks, sidewalks (and several local businesses) remain out of compliance with the Americans with Disabilities Act. This issue must be addressed systemically and with accountability to the local disability community.
  1. Education
  • We need every member of the Muskegon disability community to be fully aware of our rights under the Rehabilitation Act, the ADA, and the Individuals with Disabilities Education Act (IDEA). We need at least one full time advocate, employed by our local Center for Independent Living, who can provide consumer-driven disability rights advocacy to students and parents navigating the school systems. We want to see students with disabilities empowered to achieve their own goals and for schools to set higher (and equal) expectations for youth with disabilities to be economically independent and self-determined as adults.
  1. Housing
  • We must adopt and enforce universal design standards and require publicly funded housing to meet accessibility standards.
  1. Healthcare
  • Three inaccessible bus stops in Muskegon CountyMany doctors’ offices and clinical services are not fully accessible. Physicians need to be educated about their obligations for translators or interpreters and examination tables and scales must be useable by chair users. Healthcare professionals must learn from people with disabilities about the issues that determine quality of life and satisfaction rather than assume disability is solely a medical problem.
  1. Transportation
  • Three photos of inaccessible bus stops in Muskegon CountyTransportation options for people with disabilities are woefully absent and unavailable in Muskegon County. Bus stops are not fully accessible. Paratransit services are limited to the bare minimum required by law and are not responsive to the needs of the community and to individuals wishing to utilize those services. Transportation Network Companies like Uber and Lyft, which are actively vying for support from the Michigan legislature, are also actively fighting the Americans with Disabilities Act in Court. Accessible taxis are generally unavailable. For many, an ambulance or Medicaid-funded medical transport van are the only options available. The right to travel freely through our community is a civil right. We must address this issue systemically and as a community.

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