2017 Conference on Disability

Earlier this week, I attended the 2017 Conference on Disability, sponsored by the Indiana Governor’s Council on People with Disabilities. (Disclaimer: I am a board member.) It was a great time, as usual.

The Sunday before the Conference began, the Indiana Statewide Independent Living Council (INSILC) conducted a town hall meeting. A moderator was brought in to  explain to Hoosiers the basics of centers for independent living, and then hear from the crowd how the centers and INSILC can better serve their constituencies. Common comment themes included frustration that the centers have not engaged more fully in public policy, concern that not many people know about the services offered by their local center, and hope that all of Indiana’s 92 counties may one day be served by a center. INSILC staff listened intently throughout the forum, and were thoughtful in assuring that those who were interested could participate in the event. My only objection is that participants were expected to raise their hand if they wished to make a comment – a task that’s not easy when your muscles don’t work. Nevertheless, it is evident that INSILC has vastly improved from previous years and I look forward to seeing how forum comments are used to further promote the organization and its independent living mission.

Monday’s breakfast keynote speaker was Senator Tom Harkin. The beginning of his speech focused on anecdotes about his Deaf brother and an entrepreneur with intellectual disabilities from Independence, Iowa. In essence, he was preaching to the choir about the ingenuity and dedication that people with disabilities bring to the business sector. Harkin shared that while many Titles of the Americans with Disabilities Act (ADA) have dramatically increased opportunities for people with disabilities, Title I, which addresses employment, has not had the same effect. Employment for people with disabilities is about the same as it was in 1990, the year the ADA was passed. in his retirement, Harkin has decided to work on this issue and recently held the second Harkin Summit on Global Disability Employment. I’m very interested in what he learned at the Summit, but this was not discussed.

Next up was my workshop, Changing the Agency Paradigm: Promoting Choice Through Consumer-Directed Care. I wasn’t expecting a large turnout; not many people in Indiana have taken advantage of the paltry consumer-directed options currently available. However, my room was packed! Attendees were very receptive to my message, and seemed eager to work on advocating for more consumer-directed options. As one attendee pointed out, though, providers need to be part of this conversation rather than sticking their heads in the sand or actively objecting to policy changes. Those providers were nowhere to be found. The session, and the interest of its participants, really got me revved up and excited to continue advocating for the expansion of consumer-directed care options through Indiana Medicaid.

24312795_10213405462764569_6790251941549572215_n.jpg
 Emily Munson presents a PowerPoint presentation from behind a podium with the assistance of Shannon Clark. Photo credit: Shannon Clark.

An independent living panel, consisting of people with a wide variety of disabilities, convened after lunch. Afterward, I attended a workshop by Diana Braun. She showed the film Body & Soul: Diana & Kathy, and then discussed what she has been doing since Kathy’s death. Then I spoke with some of the exhibitors, including the folks at the INDATA Project. The assistive technology available today is truly incredible, including a vibrating GPS system you can put inside your shoes and glasses that can help colorblind people better differentiate color.

Tuesday morning began with a keynote from Dr. Sue Gant. She spoke about what happened at Henry’s Turkey Farm, detailing horror after horror. I went to her workshop about detecting abuse and neglect afterward, although participants hijacked the session by asking specific questions before Dr. Gant even had the opportunity to begin. Disturbingly, one professional in the audience didn’t realize she was a mandatory reporter, nor did she have any idea to whom she is obligated to report abuse, neglect, and exploitation.

Lydia X. Z. Brown brought the energy to their afternoon keynote, Claiming Disability in Resistance: Exploring Disability Justice, Struggle, and Healing. After their speech, I got to purchase a copy of All the Weight of Our Dreams: On Living Radicalized Autism. While they were signing my book, I also got to ask Lydia about her experiences at Georgetown.

My final sessions of the day contemplated community organizing as an advocacy tool and website access. I also got to visit the AbleGamers and play a video game with only my eyes! It was amazing!

HR 620: The ADA Nullification Act

Today has been, overall, disappointing. I got an adverse (and ridiculous boilerplate) agency review decision regarding my eligibility for Vocational Rehabilitation Services. I also learned that eight nursing home residents died after power outages caused by Hurricane Irma. But, I want to write about the issue that may have the greatest and longest-lasting ramifications: HR 620.

It’s sponsor, Ted Poe (a Texas Republican), euphemistically titled the bill the ADA Education and Reform Act of 2017. It should truly be called the ADA Title III Nullification Act of Hopefully Never. Currently, the only way ADA noncompliance is rectified is if a person that has a disability pursues action against the discriminatory party. If, for example, a new store is built with zero means of access for someone in a wheelchair (i.e., the only means of entry is staircases), no one is going to make the store owner comply with the ADA except people with disabilities. They could try to speak to the owner and explain that he or she is out of compliance. Or the person with a disability could file a complaint with a local human rights commission or the US Department of Justice. No government agency is out inspecting and ensuring accessibility. Complete onus is on the person with a disability.  Based on this noncompliance (note that businesses have been aware of the ADA for 27 years and have had more than two decades to learn the rules and comply) and the effects of discrimination, as well as potential out-of-pocket fees spent on court filing and attorney fees, people with disabilities can potentially recover limited damages under the ADA.

Businesses and their buddies, like Representative Poe, are upset that ADA compliance is mandatory and, potentially, costly. It is business that has petitioned for HR 620. The bill, if passed, will be detrimental to civil rights and people with disabilities. Why? If a person with a disability discovers an architectural barrier, he or she will no longer be able to file a lawsuit unless: (1) he or she provides specific notice to the owner of the noncompliant entity regarding the barrier; (2) the owner fails to, within 60 days, provide a description of the changes it will make to become compliant or fails to, within 120 days, make substantial progress on the barrier removal. This is absolutely ridiculous.

The ADA has existed for 27 years; businesses have had ample time to comply. Now, any incentive to do so proactively is gone. New businesses will likely wait until they receive a complaint to make their buildings and services accessible. And, people with disabilities may be less likely to complain. Having to manage attendant care, paratransit, and a regular job can be exhausting, and few will have time to regularly follow up with the business and ensure is making reasonable progress toward compliance. It is much easier to ask an attorney to handle the letter-writing and maintenance aspects of the proposed amendments. Yet, with or without attorney, HR 620 would require a person who has been blatantly discriminated against to wait half a year before they can enforce their rights.

Businesses frequently state that they are frustrated with “drive-by lawsuits,” in which attorneys will search Google maps, look for businesses with noncompliant parking lots, find a local person with a disability to name in the suit, and file. The business may offer to settle, not wanting to engage in costly litigation, and the litigant and lawyer may make off with $2,500 each for minimal work and, allegedly, minimal harm caused by the business’ noncompliance.

This argument is completely bogus. I live in Indiana. We have no problem with ADA drive-by lawsuits. California and Florida may have a problem, but remedies already exist. Rule 11 of the Federal Rules of Civil Procedure prohibits attorneys from filing frivolous lawsuits or harassing the adversarial party. Attorneys are sanctioned if they violate Rule 11, and all law school students learn this in their 1L Civil Procedure class. DREDF also notes that attorneys and Bar Associations have ethical obligations that prohibit inappropriate behavior by attorneys. California sanctioned one attorney regarding his unethical disability litigation methods.

From an ethical perspective, I’m truly disturbed that Representative Poe apparently has no qualms about putting forth a bill specifically designed to diminish the rights of people with disabilities. And I’m even more upset that the bill has 51 cosponsors. Members of both parties have cosponsored it. Are disability rights still a bipartisan issue? Perhaps. However,  I would be remiss if I failed to share that the bill was passed out of the Judiciary Committee along party lines. All 15 Republicans voted in favor of the bill, and all nine Democrats voted against it.

If you are even half as concerned as I am about HR 620, please contact your representative and ask him or her to oppose the bill. Share with them how it diminishes civil rights and encourages noncompliance. Share that, in addition to the arguments given above, the bill is simply immoral. Share that disability rights matter.

Free Our People Film Festival

I got home slightly before midnight, went to work in this morning, and saw the doctor this afternoon. So, you can expect me to be pretty tired. Nonetheless, I have to share how much fun it was participating in the Center for Disability RightsFree Our People Film Festival in Rochester, New York on Tuesday!

In March, my sister, Ginny, and I wrote and produced a seven-minute film, (Crip)perelli Life 2: Home Is Where The Hat Is. The film is a sequel to (Crip)perelli Life, a story about a highschooler with spinal muscular atrophy that joins a Mafia family with similarly disabled people. In the sequel, the highschooler’s service dog racing ring gets busted by the cops, and, without a transition plan in place, he gets stuck living in a nursing home. Members of the Cripperelli family have to bust him out.

Although the movie is satirical, it tackles the important and oft-ignored subject of institutionalization.  In fact, it’s estimated that more than 200,000 non-elderly people currently reside in nursing homes. The Center for Disability Rights sought to bring attention to this topic by sponsoring the Film Festival. Ginny and I came in second place, and had the pleasure of attending the Film Festival in person.

20638011_335773206862999_6188612756733319083_n.jpg
Ginny introducing our production

In addition to watching the winning and third-place videos, the Center for Disability Rights showed a couple of other videos highlighting the terrible consequences of institutionalization. A filmmaker panel concluded the evening, as members of the audience got to ask questions about the films and other disability advocacy projects.

I was privileged to participate in the Film Festival, and encourage anyone reading this blog to check out each of the short films. You will laugh and definitely learn something.  Center for Disability Rights CEO Bruce Darling also committed to promoting a similar Film Festival next year, so keep visiting the website throughout the year if you want more information on how you can participate!

Banishing Bumpiness

Are you a wheelchair user? Do you experience back or neck pain? If so, you’re not alone. Today I listened to a Great Lakes ADA Center webinar on Surface Roughness and Rollability. I was surprised to learn that wheelchair users are twice as likely as the general population to suffer back and neck pain. In fact, 60% of wheelchair users report such soreness. Some of this discomfort may be attributed to vibrations caused by rolling over uneven pathways.

Uneven pathways are bad all around. Presenter Jon Pearlman shared that $30 billion is annually spent on medical costs associated with falls. The elderly population is especially susceptible to tripping. Falls also are the most common cause of traumatic brain injuries. If wheelchairs – and especially scooters – go over particularly uneven pathways, people sitting in them may fall out. Bad, bad, bad!

Dr. Pearlman and his team discovered that, regardless of the wheelchair brand/model, vibrations measured in wheelchair seats that are driven over pathways fall either within or above the vibration caution zone delineated by OSHA. So how do we minimize this danger?

Unfortunately, DME companies have not worked to resolve the problem. Studies reveal that wheelchair cushions actually amplify vibrations into the spinal column of the wheelchair user. Suspension systems are not sufficient, either. However, to create an adequate suspension system for the level of vibration typically experienced by a wheelchair user, the wheelchair would likely become unwieldy.

The solution, then, appears to lie in the proper design of pathways themselves. Surprisingly, Dr. Pearlman reports that some paving stones create smoother pathways than poured concrete. The pattern and bevel of the paver stones are determinative of the vibrations wheelchair users will experience. Municipalities, which are typically responsible for creating pedestrian paths, should take heed of Dr. Pearlman’s data when planning new projects.

Interestingly, the US Access Board funded a portion of Dr. Pearlman’s research. My hope, as a cobblestone-hating wheelchair user, is that the Access Board will develop standards requiring minimum smoothness.

Access and Inclusion Awards

Last Tuesday, I attended the annual Mayor’s Advisory Council on Disability‘s Access and Inclusion Awards. (As for this post, better late than never, right?) This ceremony did not occur last year because the Mayor’s Office was considering merging these awards with other diversity award ceremonies. But, thanks to relentless advocacy from Councilmember Paula Haskin, Mayor Hogsett agreed to a 2017 program.

20246382_1703093743318829_3216696674764224122_n.jpg

The ceremony began with a few words from the Mayor. His speech was geared toward empowerment and appreciation for the 27 years of continuing advocacy people with disabilities have made. His referring to a person in a wheelchair as “wheelchair-bound” was a minor blunder. For those who are unaware, “wheelchair-bound” is a disfavored phrase by many who use wheelchairs. We see wheelchairs not as something we are stuck in, but rather as tools of freedom. It was a teachable moment.

20369008_1703536526607884_1409083705076763274_o.jpg

Awards were received by the following individuals:

  • Scott Wise, owner of Scotty’s Brewhouse, won the award for being an employer offering opportunities to people with disabilities.
  • Indy Pride won for being a community organization going above and beyond to include individuals with disabilities in its programming.
  • Wade Wingler, of Easter Seals Crossroads, won the lifetime achievement award in honor of a life of service to individuals with disabilities.

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.

20228370_297628520710894_5963401881975472821_n.jpg
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…

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.