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.

Banking by the Disabled

This afternoon, I listened to a webinar produced by the Real Economic Impact Network regarding trends in banking by people with disabilities. It discussed the National Disability Institute’s (NDI) recent report, Banking Status and Financial Behaviors of Adults with Disabilities. The report was generated based upon the findings of the FDIC’s 2015 national survey.

Although it may not sound scintillating, banking issues have interested me since I finished Lisa Servon’s The Unbanking of America. Unbanking, or not having a bank account and instead using alternative resources to handle money, is not in and of itself a negative. In fact, if one has low income and few assets, refraining from the use of a bank account may be rational. However, not using mainstream banking services also comes with downsides, such as an inability to access lines of credit.

NDI’s report, unsurprisingly, finds that households in which at least one person has a disability are more likely to be unbanked or underbanked.  The exact number – 46% of households affected by disability – was larger than I expected. Moreover, the report determined that the particular type of disability affecting a household does not significantly influence the household’s banking status.

Another interesting section involved the manner in which households engage in financial transactions. While 71% of households without disability made electronic payments from their bank account, only 46% of households with disability did the same. This disparity remains statistically significant whether or not the household with a disability is unbanked or underbanked. To me, a person with a mobility disability, it is much easier to make financial transactions electronically. I expected it would also be easier and safer for individuals with other disabilities, such as visual impairments and intellectual disabilities. In fact, one of the worries discussed on today’s webinar was whether the trend to engage in even more banking online will adversely affect people with disabilities lacking the technology to participate.

The entire report is definitely worth reviewing. In addition to presenting the data, NDI also makes policy suggestions to improve the financial health of people with disabilities. For example, NDI suggests that ABLE accounts could serve as placeholders for those unable to access savings accounts by nature of means testing for public benefits. Check out the report and let me know what you think!

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!

5th Annual Fair Housing Conference Debriefing

Last Thursday, I had the pleasure of attending the Fair Housing Center of Central Indiana‘s (FHCCI) Fifth Annual Fair Housing Conference & Anniversary Celebration at the Marriott East in Indianapolis. In full disclosure, I serve as Secretary of the FHCCI  Board, and helped found the organization. Nonetheless, I think everyone in attendance – and this year we set an all-time registration record – enjoyed the event.

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FHCCI Board and Staff

This year’s theme was No Hate in Our Neighborhood: How Fair Housing Laws Combat Hate & Promote Inclusion. (The program’s design credit goes to Projects Coordinator Brady Ripperger.) It highlights both the fact that Indiana is one of only five states without a hate crime law and FHCCI recently received a large grant from the Open Society Foundations to form a coalition combating hatred.

Because of my professional interest, as well as serving as moderator at the first session, both of the breakout workshops I attended addressed fair housing and disability.  At the first session, Indiana Disability Rights’ Managing Attorney Tom Crishon and Relman Dane & Colfax’s Laura Arandes discussed case law/litigation updates from January 2016 to present. The most interesting part of their session, perhaps, came during the question and answer period, when landlords peppered them with questions about the reasonableness of accommodations. At the beginning of the session, Tom joked that perhaps the audience was so crowded due to settlement agreements requiring landlords to get continuing education about fair housing law. By the end of the session, the joke wasn’t so funny as intended.

Indiana Disability Rights was featured in the second disability-related workshop as well, this time by Legal Director Melissa Keyes. Melissa discussed changes required of home and community-based service providers under new rules promulgated by Medicaid. These rules include, for example, that recipients of services are entitled to a lease and a bedroom with a lockable door. Melissa’s co-presenter, Executive Director of HOPE Fair Housing Center Anne Houghtaling, spoke about how people with disabilities are often affected by landlords’ refusal to consider those with criminal records from rental opportunities. Interestingly, she also shared that she is the individual that wrote the original grant for FHCCI startup funding years ago!

The highlight of the conference (aside from getting surprised with a poster in front of the whole audience at lunch, in recognition for five years of service to the organization) was the morning keynote, delivered by Ise Lyfe. I’d heard him speak last summer, at the National Fair Housing Alliance Annual Conference in Washington, D.C. I can’t really explain how awesome his presentations are – they include things like mathematical poetry – and emphasize the importance of the individual, the importance of participation, and of course the importance of our work.

April is Fair Housing Month. If you’re looking for a way to get involved, consider donating to FHCCI, which provides education and enforcement activities regarding fair housing in Central Indiana. Given our commitment to making the conference accessible to those in the community, registration costs do not cover the full expense of the event. Your donation could help further our activities, including the conference.