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!

Review: The Poverty Industry

One of my clients recently recommended that I read Professor Daniel Hatcher‘s The Poverty Industry. So I did. Now I understand why my client was so adamant that I read the book, and with the same urgency, I recommend that you do the same.

9781479874729_Full.jpg

Hatcher addresses the “poverty industry,” akin to the military industrial complex of which President Eisenhower warned. But it’s worse than that:

In 2011, the defense industry spent in excess of $134 million on government lobbying efforts. Impressive. But the healthcare industry spent almost four times that amount – more than half a billion dollars, including a significant focus on lobbying related to government healthcare problems for the poor. The defense industry also spent almost $24 million in 2011 on campaign contributions, but the healthcare industry multiplied that amount by almost eleven. In fact, campaign contributions made only on behalf of hospitals and nursing homes were about equal to all the campaign contributions made on behalf of the entire defense industry.

Not many Americans are aware of the extent to which private interests are intimately involved in healthcare aspects of what Hatcher refers to as “fiscal federalism.” Most of us believe that the federal government provides money to states, and permits states to deliver those funds to vulnerable populations in a manner most meaningful to the particular circumstances of those populations. But private contractors are interjected into this relationship, creating the iron triangle and the worrisome statistics noted above.

Contractors like MAXIMUS and PCG (the Public Consulting Group) operate internationally, helping governments’ take advantage of financial opportunities. What opportunities that we talking about? Taking Social Security benefits from children in the foster care system.  Taking Medicaid payments for nursing home care, and applying them to state general fund coffers or other projects that have absolutely no linkage to care of the elderly. (By the way, such contractors are often also hired by the federal government for audit activities, creating a scenario in which they are responsible for checking off on their own behavior.)

One of the examples Hatcher shares in the book hits close to home. The Marion County Health & Hospital Corporation in Indianapolis began buying for-profit nursing homes throughout Indiana. It then contracted with American Senior Communities to manage them. Owning the nursing homes permitted the claiming of more federal dollars, which would presumably be used to increase the quality of care nursing home residents were receiving. (Note that Indiana rates abysmally in regard to the quality of care experienced by nursing home residents.) In fact, the Indiana General Assembly passed a bill that would require any additional federal dollars to be spent on nursing homes. However, Governor Frank O’Bannon vetoed the bill, allowing the federal dollars to be routed elsewhere. Ultimately, they were used to fund Eskenazi Hospital. Quality of care in Indiana’s nursing homes is still deplorable.

The Poverty Industry describes numerous other examples of private companies – often with shareholders to keep in mind – working with the government to take advantage of those to whom the money was intended. It is a great eye-opener, and is likely to disturb you like no other non-fiction book on the market. I strongly recommend that everyone read this and then look into how their own state manages public benefits coming from the federal government.

Review: The Smear

I’ve read a bunch of books since my last review, but none of them lent themselves to a review on this website. This afternoon, I finished reading Sharyl Attkisson’s The Smear: How Shady Political Operatives and Fake News Control What You See, What You Think, and How You Vote. (Yes, long title, long book. But one worth reading.) Anyone who is concerned with the declining state of American media – which should, presumably, be everyone – should read this book for a behind-the-scenes account of transactional journalism, super PACs, and the smear.

5114jqVksFL._SX328_BO1,204,203,200_.jpg

Attkisson is an Emmy award-winning journalist, frustrated with how the media has become a unit of propaganda. One day, a couple of congressional staffers approached  her with dirt on their opponent. Attkisson was a disgusted:

I let the thought swirl around in my head. These men are being paid tax dollars to supposedly serve the public interest working for a member of Congress. Instead, they are using time on the clock to smear political enemies.

But this is the status quo in contemporary Washington, D.C.

Working with friendly journalists isn’t the only tactic used by those wanting to discredit an enemy.  The Internet is also a powerful propaganda tool. Attkisson describes a tactic known as “astroturfing,” which allows PR firms, nonprofits, and anyone else to sway public opinion anonymously online. Entities can create hundreds of anonymous online profiles to make it appear that there is grassroots support when none truly exists.

Perhaps most disturbingly, Attkisson documents how Democrats attempted an astroturfing campaign against “fake news.” At the time, Media Matters and President Obama were proclaiming citizens were deeply concerned about the onslaught of fake news, and that something must be done about it. Both Obama and Media Matters trainees called for websites, including Google and Facebook, to curate news. The problems? The American public is not calling out for the First Amendment to be restricted; surveys do not support that fake news is one of the biggest concerns of the American electorate. Media matters and Obama are overselling the threat of fake media, as perceived by Americans at large. The second concern is that, to solve the “threat” of fake media, Obama and Media Matters are calling upon Google, Facebook, and other companies to curate news. Such a “solution” leads to serious concerns about censorship and protection of the First Amendment. (Although Democrats’ plans fizzled when Trump co-opted the term “fake media,” it is still deeply worrisome that Google and Facebook may curate news to the advantage of a singular ideology.)

My biggest critique of this book is that it focuses almost exclusively on the 2016 election. I realize Attkisson is a political reporter, but it would be interesting to see how the smear affects those outside of politics, if at all.Anyway, if you are a propagandist in the making, are a journalist, or have an interest in learning about how the powerful are trying to manipulate you, check out The Smear.

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.

Review: Devil’s Bargain

Not long ago, I quickly finished Joshua Green‘s Devil’s Bargain: Steve Bannon, Donald Trump, and the Storming of the Presidency. I actually read it after Bannon left the White House; I never really understood the controversy over his entry or exit in the Trump Administration, and bought the book in order to provide insight. To an extent, the book was helpful, but only insofar as providing the typical left-of-center perspective dished out via the mainstream media.

410svr+grgL._SY346_.jpg

Green’s initial description of Bannon is “as a colorful version of a recognizable Washington character type: the political grifter seeking to profit from the latest trend.” He is also repeatedly portrayed as slovenly, apparently having only recently decided to “swap[] the cargo shorts for cargo pants and toss[] a blazer over his many layers of shirting.” His motto? “Honey badger don’t give a shit.”

Much more interesting than Green’s perspectives on Bannon are those regarding Trump. Reportedly, Trump is incredibly superstitious, going so far as to throw salt over his shoulder during meals. Apparently Corey Lewandowski and Trump had a falling out as Lewandowski believed that, because Trump treated him as a son, he could act like one. Not the case. Green also writes that Governor Chris Christie also irked Trump, repeatedly attempting to ingratiate himself with the family and refusing to respect Trump’s personal space.

Gossip about individual quirks aside (and Green does make a point of noting that his writing is extensively sourced), the book speculates that Trump became serious about running for president after he was humiliated at the White House Correspondents’ Dinner by President Obama and Seth Meyers. He did run, and when Paul Manafort’s efforts to mold Trump into a more conventional candidate began tanking the campaign, the Mercer family encouraged Trump to bring Bannon on board.

The book discusses Bannon’s background, both personally and professionally, but never really explains why he is so incredibly disliked, aside from his efforts to have the Clintons discredited. Although Green appears to dislike populism, in general, he never offers policy arguments to illustrate why Bannon’s platforms are wrong or inappropriate. While I did learn gossipy tidbits mentioned above, Devil’s Bargain falls flat when it comes to anything more than that.

Review: The Vanishing American Adult

I didn’t read Senator Ben Sasse‘s The Vanishing American Adult: Our Coming-of-Age Crisis and How to Rebuild a Culture of Self-Reliance when it initially came out because I was put off by the title. Do we really need another anti-millennial book? And is anyone truly self-reliant in contemporary culture? Moreover, I was reluctant to read yet another politician dictating policy solutions when he has little grasp on those upon whom he is prescribing policy. Indeed, I only picked up the book at the recommendation of my friend, T.K. Small. I’m glad T.K. recommended the book and have since learned not to judge a book by its title (or it’s author’s profession)!

51etAA6pA1L._SX327_BO1,204,203,200_.jpg

What first impressed me about Sasse was his writing itself. I was not expecting syntax and diction that were pleasant to read; I suppose a stereotype Nebraskans as boring farmers, but Sasse’s style is entertaining. Moreover, it is based in fact; he uses a fine balance of academic literature and personal anecdote to convey information in a well-paced manner.

And, although the beginning of the book does discuss how millennial Americans fail to meet many of the standards of their forbearers, Sasse does not blame millennials for these shortcomings. Rather, he takes the reader through an interesting history of the American education system and the goals of social reformers like John Dewey. As immigrants arrived from various backgrounds and jobs became harder to get, school was a good place to stick new arrivals and provide a standardized baseline. However, education transitioned from the classical toward the pragmatic. More time was continually devoted to the classroom, taking students away from family, the community, and jobs. Learning became a passive endeavor.

Dewey’s student ultimately has no soul. The only thing that matters, in the end, is man’s relation to his society. The societal here and now is the all in all. The goal is expressly not the full flowering of the individual, but rather ‘all education preceded by the participation of the individual in the social consciousness of the race.’

Certainly, other factors contribute to the lack of well-roundedness with which today’s young adults must grapple, but the mere fact that so much of one’s youth is spent in the classroom contributes significantly to the problem.

In the second, and largest, part of the book, Sasse offers concrete ideas for helping youth grow into adulthood. Importantly, none of the five proposals is a policy idea, but instead direct action that parents can take to enrich the lives of their children. He proposes: ensuring that young people spend time with those of a range of ages and experiences; arranging for youth to work; diminishing consumption of material goods; traveling; and sharing great works of literature with young people. Sasse uses his own family’s practices as examples for instituting the above ideas, but also recognizes that implementation will look different for every family. For example, he notes that one need not travel far in order to try one’s hand at navigating, managing a new environment, and participating in new experiences.

I’ve already noted that I was impressed with the book, and believe others would learn from its pages. In particular, I would recommend this book to parents and those who have children in their lives, including aunts, uncles, and mentors.

Review: Dangerous

I really hesitated before purchasing Milo Yiannopoulos DangerousI was afraid of the controversy that reading the book in public might entail. One of my work colleagues and I discussed Milo and his movement after the riot that followed him at Berkeley. Before hearing about the massive damage left in his wake, I had never heard of him, nor read his Breitbart columns. Shortly after the Berkeley incident, Milo made the news again, resigning from Breitbart after allegations that he supported pedophilia. So, you can imagine why I was leery.

It turns out that Milo relishes the spotlight, referring to himself as a “dangerous faggot” and adopting the drag persona Ivana Wall. His book describes the role he’s created for himself, eagerly pushing boundaries and challenging liberals who try to suppress the free speech of himself and others. Milo promises readers that he is a “good troll,” only using “a certain level of disregard for other people’s feelings” when “reasoned argument and polite entreaty have failed.

Nonetheless, in Dangerous, Milo is occasionally downright mean for no apparent purpose, other than getting himself put squarely back in the limelight. Milo regularly complains about “ugly women” and “fat people,” yet claims he only trolls “deserving targets,” including “the disabled.” What did people with disabilities ever do to get on Milo’s bad side? I find his attitude toward people with disabilities particularly ironic given that Milo claims HIV/AIDS is still a problem worthy of attention, particularly amongst the gay male population. Funny that, when the Americans with Disabilities Act was being passed, disability advocates fought tenaciously to get HIV/AIDS recognized as a disability within the Act’s protection.

The surprising thing is that Milo actually has many astute points. Particularly in regard to social media censorship and the millennial generation’s engagement in the political sphere, Milo has many thoughts worthy of discussion. Because I actually learned something from Dangerous – something interesting, I promise, completely aside from name-calling – I feel compelled to recommend that others give the book a chance. At the same time, I understand if and why you don’t. Fortunately, you have to freedom to expose yourself to Milo. (I’m sure he’d get a kick out of it!)

51GWPkjQH4L._SX331_BO1,204,203,200_.jpg