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!

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.

Review: Planet of the Blind

In honor of Disability Awareness Month, I decided to read a memoir about disability: Stephen Kuusisto‘s Planet of the Blind. It was a great choice, and I give it two thumbs up.

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As a person with a disability, myself, I’m not a big fan of the disability memoir-genre. Typically, they tend to bemoan lost status (especially those written by authors with spinal cord injuries) or start out from the perspective of wanting to inspire readers. While Kuusisto does expend pages writing of his desire to “pass” in “normal” society, he uses more to show the folly of his attempts. In effect, Planet of the Blind is a story of disability acceptance.

Perhaps what I enjoyed most about Kuusisto’s work is that he is a poet, and his prose is stunning. For example: “My masculinity is fragile, my ego crawls around blindness like a snail exploring a piece of broken glass.” For the most part, readers are free from repeated clichés about overcoming and finding peace; Kuusisto has the vocabulary to invite readers more deeply into his thought processes and emotional responses.

In chart, if you are interested in reading something more than a memoir, consider Planet of the Blind.

Bound and Gagged?

Yesterday evening, a terrible story broke: a white 18-year-old, described as “having mental health challenges,” was kidnapped in a stolen van by four African-American young people and tortured. The victim was sworn at (“fuck white people” and “fuck Donald Trump”), physically assaulted until he bled, and forced to drink toilet water over a period between 24 and 48 hours. It’s difficult to imagine, but for the actual footage the assailants broadcasted on Facebook. Absolutely sickening.

You’d think that organized minority groups, and justice arms of the government, would come out strong against this behavior. After all, these are the entities that clamor for hate crimes legislation and are supporting one another on the eve of Trump’s assuming office. I expected to go on my own Facebook account and see my liberal friends sharing the story, condemning the unjustifiable behavior of the assailants that demonstrably victimized someone on the basis of his disability and his race. To date, only one of my 900+ Facebook  friends registered as a Democrat has expressed disgust at the story.

Okay, I reasoned. My friend who posted the story is a fellow disability rights attorney. Maybe people simply haven’t heard about the victim and his torture. Not so. I believe they simply fail to see the depravity in the actions. Why? CNN host Don Lemon plainly stated – and then repeated – “I don’t think it’s evil.” Police Commander Kevin Duffin stated, “Kids make stupid mistakes.”

So… Because the perpetrators hated Trump, like their liberal comrades, taking a disabled man, binding and gagging him, and torturing him for hours upon hours, their actions might be justified? Or, at least, understandable? Fathomable? Logical? This boggles my mind!

Speak out, liberal friends. Unlike this tragic victim, you’ve not been bound and gagged – use your voice and condemn this violence!

EEOC’s New Affirmative Action Rule

Today the Equal Employment Opportunity Commission (EEOC) published its final rule on Affirmative Action for Individuals with Disabilities in Federal Employment. It becomes effective 60 days from publication, and its provisions are applicable beginning January 3, 2018. Indeed, federal employees with disabilities – and federal job seekers with disabilities – have some great things to look forward to!

Most importantly, the rule adds two significant requirements to the administration of the Rehabilitation Act. First, those federal employees with targeted disabilities requiring personal assistance (PA) services for work and work-related travel can receive them from their employing agency as a reasonable accommodation. This is huge! People with significant mobility disabilities may now be able to use the restroom at work, eat lunch, and have someone put their coat on before they leave for the day. Importantly, the EEOC expects federal agencies to even provide PA services outside of the agency’s infrastructure for those individuals telecommuting.

I would feel a bit strange about my employer being involved in my toileting routine. Fortunately, the EEOC specifically notes that when hiring a PA service provider, the agency shall “give primary consideration to the individual’s preferences to the extent permitted by law.” This means, for example, that if a female employee with a targeted disability only feels comfortable with the assistance of another female, the agency must consider this request. I am grateful to those submitting comments to the EEOC regarding the intimacy of the relationship between a PA service provider and the recipient of those services.

Second, the EEOC is requiring federal agencies to take specifically-designated steps toward hiring more people with disabilities, and particularly those with severe disabilities. (It should be noted that the EEOC specifically refrained from using the word “severe,” after a commentor indicated the lack of political correctness. You’ll get no political correctness from this crip; consider my succinctness a reasonable accommodation for exhausted vocal muscles.) Specifically, the final rule mandates that the following steps be taken to increase the hiring advancement of those with disabilities:

  • Programs and resources should be used to identify applicants with disabilities;
  • Contracting with disability organizations, including vocational rehabilitation programs, centers for independent living, and employment networks;
  • Ensured availability of sufficient personnel to answer disability-related questions;
  • Creating a plan of action to ensure that disable employees have opportunities for advancement, including information about training opportunities and/or a mentoring program;
  • Inclusion of disability within the agency’s anti-harassment policy and training materials;
  • Adoption of easy-to-understand and easily-available reasonable accommodation policies and rights to accessible technology;
  • Guarantee that the agency evaluate its entire budget when determining whether a reasonable accommodation would constitute an undue hardship; and
  • Provide applicants or employees with a written notice (in an accessible format) of why a reasonable accommodation was denied, along with instructions on how to file a discrimination complaint and appeal.

How’s that for being a model employer?! Any guesses on when we can expect the private sector to get on board?

Debriefing: Conference on Disability 2016

Earlier this month I had the pleasure of attending the Indiana Governor’s Council for People with Disabilities‘ annual Conference on Disability. As in years past, the conference was a great opportunity to mingle with disability advocates across the state. This year, the Council also took steps to appeal to a larger audience, offering more flexible registration options for professionals (such as attorneys and social workers) and speakers known throughout the nation. This year, the Indiana Statewide Independent Living Council also sponsored an independent living conference track and offered scholarships for people with disabilities.

The night before the actual conference began, I attended the screening of Including Samuel and the discussion with filmmaker (and father of Samuel) Dan Habib. habib_dan_color_pngI tend to think of movie screenings as early-access events; this film is about a decade old, so it felt a little stale. I didn’t learn anything new, and fear that fellow attendees with disabilities related a bit too well with Samuel. Certainly, the film would be helpful to those wanting to learn more about the special education system, including parents of newly diagnosed children and special education teachers. However, I’m not sure I would have ventured out in the December cold to participate in this event had I known what to expect. That being said, Habib was a gracious speaker, and had a special connection with Indiana’s current class of Partners in Policymaking, having participated in the New Hampshire program after Samuel’s diagnosis.

Monday morning’s keynote presentation was given by Jonathan Martinis, an attorney jmartinisperhaps best known for his work in the “Jenny” Hatch case. There, he fought Jenny’s guardian, who was unnecessarily controlling Jenny’s life and limiting her opportunities. Martinis, who now serves as Senior Director for Law and Policy at the Burton Blatt Institute is a proponent of supported decision-making in lieu of guardianships. Supported decision-making enables people with disabilities to pursue self-directed life outcomes and independence, unlike guardianships which constitute the civil death of the ward.

I attended two of Martinis’ Supported Decision-Making from Theory to Practice workshops: Health Care and Life Planning and Special Education and Vocational Rehabilitation. Both were available for continuing legal education credit, and Martinis generously encouraged attorneys in the audience to steal his language for powers of attorney and other legal instruments. Also importantly, Martinis directed audience members with questions to Indiana Disability Rights, the State’s protection and advocacy agency.

My afternoon workshops were presented by Stephanie Woodward, Director of Advocacy at the Center on Disability Rights. Woodward came from New York to encourage Indiana’s
woodwardadvocates to get more aggressive, and shared a number of tools people with disabilities can use to promote community change. On a lighter note, Woodward also thanked everyone for being a friend, leading the audience in multiple singings of the Golden Girls theme song.

Woodward’s Encouragements continue the following morning, when she was joined by  Associate Director of the White House Office of Public Engagement Maria Town. The two discussed their respective roles as activist-demonstrator and activist-on-the-inside. I was pleased that m_townmoderator Amber O’Haver asked my questions about the victories and failures of the Obama Administration, hopes and fears about the Trump Administration, and  tips for advocating for the Disability Integration Act. I also enjoyed listening to Woodward and Town given their inside perspective as people with disabilities; they felt authentic.

The final major presentation was by Dr. Ruthie-Marie Beckwith, author of the intriguing book Disability Servitude: From Peonage to Poverty. (Yes, it is the most expensive book I’ve ever purchased for “pleasure” reading.) Beckwith’s presentation was especially riveting in that Indiana is currently home about 40 sheltered workshops. Beckwith was clear in beckwithconcluding that people with disabilities have historically been treated terribly in sheltered workshops and other institutions where labor is not remunerated equitably, and multiple people expressed discomfort with the presentation. Personally, I was glad to see that so many people were uncomfortable – Indiana needs to innovate and offer people with disabilities alternative employment opportunities that permit them competitive wages within their community.

Of course, the Conference would not be complete without a few words from me! My colleague, Bonnie Bomer, and I gave a workshop following Dr. Beckwith’s presentation entitled “A State That Works… For Subminimum Wage.” Our workshop was the first time Indiana Disability Rights released data collected during its sheltered workshop site visits occurring across the state in Summer 2016. We got a lot of great feedback, and anticipate sharing the data with others again soon.

I’m already looking forward to 2017’s Conference on Disability. What are your ideas for themes, workshops, and presenters?