Independent Living, Hoosier Style

I’ve spent the last two days in a training program for the Indiana Statewide Council on Independent Living  Council (INSILC). We had the pleasure of being trained Paula McElwee, our technical assistance coordinator from Independent Living Research Utilization (ILRU), and Kimberly Tissot from able South Carolina. The information conveyed by Paula and Kimberly was well-received by INSILC members and prospective members, myself included.

What I did find concerning, however, was confirmation from individuals across the state that many people – both with and without disabilities – are still unfamiliar the philosophy of independent living. I want to devote this post to spreading the word. Independent living is essential, especially as fears loom about political plans for re-institutionalization.

Independent living is generally considered the brainchild of Ed Roberts. Roberts was paralyzed from polio, and used a respirator and an iron lung for respiratory support. Nonetheless, he knew that he had much to contribute, and applied for services from vocational rehabilitation (VR). VR decided that he was too disabled and turned him away without assistance, effectually deeming him unemployable. Roberts pressed on, undeterred, and was admitted to Berkeley. There, Roberts lived in the campus clinic, as opposed to a dormitory, and his brother provided personal care assistance.

As more students with physical disabilities gained admission to Berkeley and forged friendships with Roberts, their band became known as the Rolling Quads. They demanded more equal treatment from Berkeley, including the removal of environmental barriers and the provision of personal care services. Yes, their goal was to live independently. Although they could not “independently” complete the physical tasks of activities of daily living, their independence came through the direction of how those activities were completed. Independence is about choice.

(By the way, in case you were wondering, after Roberts completed his education, he was appointed by the Governor as VR Director. Mwahahahahaha!)

With prompting from those in the disability community, the federal government began funding what are known as centers for independent living (CILs). Today, the funding scheme is fairly complex, but CILs are tasked with providing core services for people with disabilities in their service areas:

  • Information and referral. Staff can refer clients to local community resources such as transportation, accessible and affordable housing options, sources for durable medical equipment, etc.
  • Advocacy. Staff can help clients learn methods for self-advocacy, such as best practices for asking an employer for reasonable accommodations. Staff may also engage in systems advocacy, informing policymakers about the ways in which proposed legislation may affect people with disabilities.
  • Independent living skills. Staff can provide instruction on things like personal care assistance, accessible transportation options, adaptive sports, etc. Obviously, the skills imparted to clients will depend on each client’s individualized needs.
  • Peer counseling. Since many CIL staff have disabilities themselves, they can provide clients with insights about their own experiences. Learning from an experienced peer can demonstrate that independent living, holding a job, etc., is possible, regardless of what the client has heard elsewhere.
  • Transition. Staff can help clients transitioning from high school to higher education or the workforce. Important tips, such as getting a benefits analysis and exploring Medicaid buy-in options, can be very helpful to those transitioning into adulthood.

Important stuff, no doubt. Although the day-to-day operations of the CILs are largely autonomous, the state independent living council in each state is responsible for drafting a state plan for independent living. This plan, which incorporates feedback from people with disabilities, CILs, and community partners, directs the overall operation of independent living within the state. The drafting and monitoring of this plan are primary responsibilities for councils, including INSILC.

Crucially, INSILC is the only gubernatorially-appointed board in Indiana that contains a majority of people with disabilities as voting members, with a consistent mission of promoting independent living within the state. They are, most certainly, a necessary voice. The past two days’ training sessions were great; it makes me happy to see INSILC’s commitment to continue striving to represent the interests of peers with disabilities.

Review: In Our Hands

You might’ve heard about political scientist and professor Charles Murray recently. He was the subject of a recent campus protest, and is also (in)famous for writing The Bell Curve. I picked up the most recent draft of his call for the creation of a universal basic income (“UBI”), In Our Hands: A Plan for Replacing the Welfare State.  As a person who relies on government welfare programs (e.g., Medicaid), I’m skeptical of most libertarian plans for reform. However, Murray and his book surprised me in a very positive way!

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Unsurprisingly, Murray calls for the elimination of most wealth transfer programs, including Social Security, Medicare, Medicaid, and additional programs that may not initially come to mind when one thinks about welfare (e.g., farming subsidies). However, people – citizens, at least – will not be left completely without government support. Wealth transfer programs will be replaced by UBI. The figure Murray gives is $13,000 per year for each individual aged 21 and older (the amount can be proportionally reduced by up to $6,500, depending upon how much income a given citizen receives each year). Lest you think this is going to cost taxpayers even more than current welfare programs, Murray’s proposal is actually less costly than the status quo!

Unlike current programs that place in enormous restrictions on how each form of wealth transfer may be used, Murray’s UBI has at least $3,000 each year must be used to purchase catastrophic health insurance. This should please Democrats, in that all Americans would have healthcare. It should also please Republicans, in that catastrophic care truly is health insurance. Believe it or not, I am also impressed by Murray’s proposal because he states that long-term care would be included in the mandatory health insurance packages. People with severe disabilities in need of personal care assistance have been looking for a Medicaid alternative for years – could Murray’s UBI be it?

There is much more to discuss in this short book, and perhaps this blog will revisit some of the other benefits of UBI at a later time. I’m intrigued with the idea, and have been mulling over Murray’s proposal all week. Needless to say, this is definitely a book I recommend to anyone interested in government reform.  AEI-affiliated ideas strike again!