Disability Rights March

Today I attended a disability rights March in Indianapolis sponsored by the Global Accessibility Project. Those who turned out – on a hot day that threatened thunderstorms – both with and without disabilities, are committed to promoting disability rights. A guy from Iowa even stopped by and joined us for a while, sharing that he stood in solidarity with our frustrations about the lack of inclusion of people with disabilities in the broader social justice landscape.

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Photo credit: Global Accessibility Project

As we marched around Indiana’s Statehouse and Government Center, numerous accessibility fails were witnessed:

  • Our permit was for gathering on the south lawn of the Statehouse. It’s impossible to get there without climbing stairs.
  • To enter the Statehouse, those who cannot climb stairs are required to enter in the back, via the basement.
  • Accessible parking is nowhere near the accessible entrances of either building.
  • Flower planters are placed about one foot from the edge of the curb where those using accessible parking are required to parallel park. This makes it impossible for those using the parking spaces to deploy ramps or lifts.
  • One ramp was ridiculously steep, clearly outside Access Board requirements.
  • Many ramps were in poor repair, with potholes at the edges.
  • One ramp was completely inaccessible, as construction materials covered it. There was no opportunity to detour, as construction cones were dumped in the possible detour pathway.

Think that’s a lot of problems? We walked less than two blocks! Perhaps some of our frustration can now be understood…

Review: An American Sickness

You know by now that I love reading and sharing information that I learn from a good book. Elisabeth Rosenthal‘s An American Sickness: How Healthcare Became Big Business and How You Can Take It Back is truly one of the most interesting books I’ve read all year! Especially now, as Senators discuss repealing and/or amending the Affordable Care Act, read this book!!!

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Rosenthal, a former journalist and physician, begins by thoroughly describing how the medical-industrial complex takes advantage of patients and legal loopholes. She devotes a chapter each to the ills of insurers, hospitals, physicians, pharmaceutical companies, medical device companies, ancillary service providers, billing and coding contractors, medical researchers, conglomerations, and patient complacency. The facts presented are fascinating: for example, “[t]he average hospital cost per day in the United States was $4,300 in 2013,” more than triple “the cost in Australia and about ten times the cost in Spain”!

The concept that irked me the most is “venture philanthropy.” Of it, Rosenthal writes:

The problem is that many charitable foundations no longer see themselves as funders of research for knowledge propelled by donor dollars to cure a disease, but instead as inventors in new treatments.

When insulin was developed in the 1920s, researchers did not stand by patent protection to reap income, but instead shared their knowledge with the community. When the March of Dimes helped fund vaccination research, it did not bill children or their families for inoculation. Now, medical charities are investing money in research. Because any successful discovery will likely result in royalties to the charity shareholder, the charity has no financial incentive to advocate for the cost of that discovery to be accessible to those served by the charity. Talk about conflict of interest!

Rosenthal devotes the second portion of the book to offering both systemic reform, as well as individualized, methods to save money on medical treatment. Again, this section was disturbing, given that neither Republicans nor Democrats are proposing many of the reforms proposed by Rosenthal. Although concepts like tort reform have been initiated in states like Indiana, contemporary federal reform efforts appear completely off the mark.

Last, but most certainly not least, the end of the book contains multiple appendices patients can use to arm themselves in price negotiation. Although options for comparison shopping for medical procedures are limited, Rosenthal provides links to those options that are available. She also includes template letters patients can use when objecting to healthcare charges.

This book contains good stuff, all around. I’ve been bugging my coworkers about it all week long, eager to share stories about how we are all getting ripped off. This book, however, is not a ripoff, but a real gem for the bookshelf!

Review: Life, Liberty & the Defense of Dignity

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

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

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

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?

Chapman University, Media, and Society Fail

Last night I heard a news story about Marty O’Connor and his mother, Judy. After becoming quadriplegic, Marty opted to enter Chapman University‘s MBA program.  When he graduated on May 20, Chapman awarded Judy an honorary degree. Judy apparently attended every class with Marty, helping him take notes and providing other physical assistance as necessary. The story has gone viral, and many of those sharing it indicate that the story makes them feel good. Not me. I’m pissed off.

First, I’m curious why Chapman can award an honorary degree but not reasonable accommodations. Chapman may be a private institution, but I have a hard time believing that it does not accept federal funding of any kind, including federal student loans to pay tuition.  Under the Rehabilitation Act, Chapman would be responsible for accommodating students with disabilities. One of the simplest accommodations to provide those with limited mobility is note taking services. There should not have been a need for Judy to attend classes with Marty. Even assuming that Chapman could not provide all of the services rendered by Judy – personal care, for example, would not be a reasonable accommodation in most circumstances – Marty should have been served by the California vocational rehabilitation (VR) program. VR is designed to help individuals with disabilities achieve and maintain their employment goals, and can provide a range of services including personal care, transportation, and assistive technology.

The fact that Judy did not leave her son’s side during his MBA program is not something to be celebrated. Would we fawn over an able-bodied student’s mother going to graduate school with him or her? No! We’d probably be disturbed. If that story was covered by the media at all, it would be to discuss millennials’ failure to launch or overbearing mothers; the mother would most certainly not be praised.

My intent not to malign Judy; I have no doubt that she sacrificed a lot in order to help Marty be successful. And I believe that the media covering the story probably have good intentions, and want to commend the selflessness of a loving parent.  But the current system designed to help people with disabilities relies far too heavily on parents to provide for adult children.  In Indiana, for example, parents must be more than 80 years old in order their adult children with developmental disabilities to qualify for emergency placement on a waiver that provides in-home services. More than a decade after retirement age, Indiana still expects parents to provide the majority of care for adults with disabilities. By praising parents like Judy, who willingly make these life sacrifices, I’m afraid that the media perpetuates the myth that these relationships like those of Marty and Judy should be the norm. Yes, mothers should love their children. But when those children become adults, they need to have the opportunity to gain independence and flourish independently.

I told the above to my own mother, discussing the story with her this afternoon. She said that I was one to talk; after all, I rely on her to provide my transportation to and from work every day. Which brings me to my final point – society is still failing people with disabilities. I would gladly hire someone else to drive me to and from work, but I cannot afford it, even as an attorney.  Though VR legally should have paid for my tuition, it refused, and I graduated with $83,000 in student loans, which I am still repaying.  Though I am on Indiana’s Medicaid buy-in program, it pays caregivers so little – less than $10 per hour – that I cannot attract the quality individuals on whom I must rely. My sister, for example, receives personal care assistance through an agency, and that agency has failed to send someone to get her out of bed more than five times in the last month. It seems that people like Judy and my own mom have to step in because the social programs designed to help us are so crappy.

The next time you read a story like that of Marty and Judy, I encourage you to do more than “feel good.” Ask yourself whether everything is as sunny as it appears. And if the answer is “no,” ask what you can do to help change it.