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.

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?

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.

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?