Month: June 2017

Review: Life, Liberty & the Defense of Dignity

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Leon Kass‘ Life, Liberty & the Defense of Dignity: The Challenge for Bioethics is an oldie, but a goodie. The premier bioethicist explains the philosophy of dignity, and describes how various technological advances, including cloning and progress toward immortality, threaten dignity and humanity itself.

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The book is heavy stuff. In addition to the gravity of the subject matter, Kass dives into Kantian ethics, etymology, and the philosophy of science. Perhaps this will deter the casual reader, but those interested in the subject should appreciate the thorough eloquence of the author.

The main challenges Kass addresses include: the origins of procreation, genetic therapy, cloning, the sale of organs, the so-called “right to die,” the quest for immortality, and the nature of biology. Throughout, Kass argues in favor of restraint and respect for human nature.

I was particularly intrigued by those  passages of the book in which Kass opines on the nature of humanity itself, writing that the corporeal nature of our situation should not be discounted.

The point is crucial, and stands apart from the text that teaches that: everything high about human life – thinking, judging, loving, willing, acting – depends absolutely on everything low – metabolism, digestion, respiration, circulation, excretion. In the case of human beings, “divinity” needs blood – or “mere” life – to sustain itself. And because of what it holds up, human blood – that is, human life – deserves special respect, beyond that which is owed to life as such; the low ceases to be the low.

If the above quote gets you thinking, I highly recommend reading the remainder of Kass’ book! Indeed, given the attention on healthcare as of late, Kass’ theories are all the more timely and deserving of contemplation.

Independent Living, Hoosier Style

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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: Rising Star

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Earlier this week I finally finished David J. Garrow’s Rising Star: The Making of Barack Obama. I say finally for a few reasons. The book is so long – my e-book, in regular typeface, was about 2,000 pages – and so detailed that it reminded me of War and Peace. In fact, the first chapter opens with 1970s Chicago, well before Obama ever set foot there. And it contains so many different characters that it’s difficult to keep everyone straight. Nonetheless, Garrow effectively shows the inner war and peace Obama encountered on his path to the presidency.

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Those who read Obama’s Dreams From My Father are familiar with the gist of Obama’s background. His mother is a white American and his father was a black Kenyan.  Neither parent was physically present for the majority of Obama’s childhood, and he was raised by his maternal grandparents after living with his mother and stepfather for several years in Indonesia. Obama describes himself, in his autobiography, as someone searching for identity and place.

Garrow unravels the vignettes written by Obama, and digs much deeper into Obama’s past.  While many of Obama’s Hawaiian friends from childhood remembered him as a smart and laid-back individual, Obama’s book doesn’t necessarily portray the same, but instead describes racial conflict. Garrow, instead, posits that Obama actually became more aware of racial conflict and identity while at Occidental College.  It was then that Obama ceased allowing friends to call him “Barry,” and became “Barack.” It was then that he chose his identity as black (rather than someone of multiple ethnicities.)

Another fascinating portion of the book follows Obama’s relationship with Sheila Jager. Garrow suggests that Obama ultimately broke up with Jager because Obama believed that he could not successfully run for higher political office unless he developed ties in the African-American community by marrying a woman from the same. Michelle Robinson filled that role perfectly. (And Michelle Obama did all that she could to keep her husband from running for office, believing politics was beneath his talents.)

I would recommend this book to anyone interested in learning more about President Obama, Chicago politics, or campaigning. While the book focuses on both the personal and the political, the personal accounts, gleaned through interviews Obama’s friends and relations, were the most interesting. They provide insight into the motivations of a man that led America for eight years.

Budget Concerns

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I haven’t written about politics lately, but I’m moved to do so given the Trump Administration budget proposal announced last month. The proposed budget has met criticism from seemingly everyone, regardless of political affiliation. Indeed, this post is also intended as a critique, though geared specifically toward how the budget is likely to affect Americans with disabilities.

Granted, many people with disabilities, as well as organizations supporting groups of people with disabilities, have been outspokenly opposed to the proposed budget. In fact, the Consortium for Citizens with Disabilities, self-described as “a coalition of approximately 100 national disability organizations,” has firmly called upon Congress to “reject” the proposed budget. Two women who self-identify as disabled, Stacey Milbern and Patty Berne, talk about being “terrified” at the prospect of living under the proposed budget, and suggest that changes demanded by implementation would go to “the core of being able to live.”

Most concerning the majority of people with disabilities are the proposed funding levels for Social Security and Medicaid, despite Candidate Trump’s promises not to revoke social safety nets. Although OMB Director Mick Mulvaney has attempted to explain that the proposed budget works to cease the growth of spending, rather than seriously cut funding, it’s difficult to understand how capping spending will not have an adverse effect on people with disabilities over time. Insurance companies will likely continue to pay exorbitant amounts for medical treatment, which counteracts any government attempt to reduce healthcare spending. Indeed, at this point, this Republican has to conclude that the only ways to seriously reduce medical expenses involves either completely removing the federal government from health insurance or mandating universal coverage.

I am dismayed by multiple Facebook posts friends that say Trump, Mulvaney, and Republicans, either together or individually, are working to kill people with disabilities. I have no doubt in my mind that these posts are hyperbolic and false. Nevertheless, I understand the fears of the Facebook posters. Federal law requires Medicaid to cover nursing homes days for eligible beneficiaries, but does not require Medicaid to cover care in home and community-based settings. This is disturbing, first, because home-based long-term care is generally overwhelmingly cheaper than institutional care. If OMB and Congress is worried about healthcare spending, why not flip this paradigm? Second, an overwhelming number of people with disabilities would prefer to live at home than in nursing homes. However, if States have less money to work with, they may need to reduce home-based care in order to cover the mandatory nursing home coverage. Unfortunately, I doubt that many congressmen understand the nuances of Medicaid statutes and regulations, and fear that these concerns will go under their radar.

Also concerning is the fact that the proposed budget wants to merge multiple disability programs into a single entity. For example, State Council on Developmental Disabilities, the Independent Living Program, and funding for traumatic brain injuries would be merged into a single Partnership for Innovation, Inclusion, and Independence.  Budgets for each would be reduced across the board. So, the proposed budget would reduce the ability of the aforementioned advocacy groups to speak up and address concerns like institutional bias discussed above. Even more concerning, the Independent Living movement and the developmental disability community are not always on the same page when it comes to the implementation of solutions. Should this portion of the proposed budget pass, I anticipate more division in the disability community and greater discord overall.

Certainly, the proposed budget is not completely negative. I’m one of the few people I’m aware of that is not completely adverse to the idea of Medicaid block grants. Many are concerned that block granting will  reduce not only the amounts of services available under State Medicaid programs, but also reduce rights and remedies available to beneficiaries. While this is certainly a possibility, I also believe that Medicaid ripe for reform and the ability to innovate at the local level holds promise.

What do you think?