Initial Thoughts on RFRA

In the last blog, I wrote about Senator Rubio. One of the things I like most about him is that he is willing to invite others into the Republican tent. He doesn’t automatically write off the Latino vote; instead, he talks with members of that community to identify areas of common ground. Similarly, he gently rebuked Mitt Romney for his categorization of 47% of Americans as “takers.” Rubio recognizes that sometimes people are born or fall into bad circumstances beyond their control. This characteristic has been blasted by some hard-line, extremist Republicans, but I think Rubio has it right.

And, although I fervently identify as a Republican, I am disappointed by those same hard-line, extremist social conservatives living in Indiana who have dug in their heels regarding the State’s Religious Freedom Restoration Act (RFRA).

I do feel bad for some Christians who have been left on the hook for astronomical damages after refusing to open their property for a homosexual wedding, etc. While I would not refuse to serve a gay or lesbian individual, I also would not sue a family farm, etc., for refusing to let me wed on their property. Would I publicly shame them? Probably. Would I bitch about them to friends and family? Absolutely. Would I take them to court (or, even worse, a local civil rights administration) to deprive them of their homestead? No. But others have chosen to do so. I believe these are the actions that have driven Hoosier Republicans to pass RFRA. They genuinely want to protect constituents’ ability to act (or decline to act) in a manner consistent with their religious beliefs.

At the same time, that doesn’t mean enacting the RFRA was the proper decision. From a pragmatic standpoint, it does open the door for discrimination. While I do believe that Republicans intended to protect religious beliefs, is ludicrous to ignore the fact that RFRA was passed in the legislative session immediately after homosexual marriage became legally permissible in Indiana. It’s also important to recognize that, while they have been the most vocal opposition group, gays and lesbians are not the only ones at risk of being discriminated against under RFRA. Several years ago, I remember reading Christopher Hitchens’ book, The Missionary Position: Mother Teresa in Theory and Practice. She refused to purchase an elevator for a New York orphanage she ran, claiming that the orphanage’s funds needed to be expended elsewhere. Although perhaps a bit far-fetched, under an RFRA-type law her attorneys could have made an argument that Catholic dogma mandates helping one another and, as Mother Teresa wanted, orphanage employees could carry disabled people up and down stairs. That way, the Church could have carried out more important activities with the funds, such as feeding the poor. Less far-fetched, what if a religious organization believed that disabled people were made that way by an evil force (i.e., the devil)? Could they refuse service to a paraplegic or a blind person?

As a Hoosier, I hate to hear that so many organizations are pulling out of Indiana. As Mayor Ballard has stated, Indianapolis has worked for decades to make the city the tourist destination that it is. Nevertheless, an organization I am affiliated with has its constituents clamoring that the conference be moved. Were it not for over $100,000 in contractual losses the organization would face in moving elsewhere, the organization would be long gone. I doubt it will return in future years unless something is done.

Of course, that’s not to say that a decision is inherently good or bad based upon its public reception. Indeed, many legislative activities that need to be conducted (e.g., Medicaid reform) are politically unpopular. Yet, this bill simply trades civil rights for one constituency for the civil rights of another constituency. That’s the risk of delving into messy social issues.

Ready for Rubio

Last weekend, I finished Marco Rubio’s American Dreams: Restoring Economic Opportunity for Everyone. I’m a fan of Senator Rubio; as his proposals prove, he is in favor of promoting opportunity for everyone.

One of his most interesting ideas discussed in the book addresses solutions for the student loan debt problem. When I graduated from law school, it took me nearly three years to find a job. In that time, my student loan debt ballooned to over $83,000. After paying more than 75% of my income for over two years to Sallie Mae – er, now Navient – and her moneygrubbing pals, I still owe more than $56,000. (Even though I can’t get much compound interest from the bank, the loan company should do!)

Anyway, Senator Rubio proposes allowing wealthy individuals or companies to invest in students. These venture capitalists could contractually agree to pay for a student’s education (or a portion of it) and receive X% of the student’s income for Y number of years. For example, let’s say a student wants to get a bachelors degree in mechanical engineering. The student needs an additional $20,000 to pay for expenses. A company like GE could agree to front the $20,000 in exchange for 6% of the student’s income for a period of five years. If the student is like me, and cannot find a job, that’s too bad for GE – it assumed the risk. If the student is very successful and ends up making $200,000 a year, GE makes a ton of money. Nevertheless, the student is still in good shape and got what he needed.

While many, including former Indiana Governor Mitch Daniels, support this plan, critics call it nouveau indentured servitude. And being beholden to Sallie Mae for life is preferable?! Besides, I’m fairly certain our legal system has come a long way since the late 1600s. Even if certain state laws throughout the country to have prohibitions on the assignment of future income, I believe this proposal is worth looking into. Senator Rubio writes that the system has been adopted as an option in both Europe and South America, where it has allowed many low-income students to reach their educational and professional aspirations.

Improve Yours First, GCPD

You might notice that it took me several days to write about this year’s Annual Conference sponsored by the Indiana Governor’s Council for People with Disabilities, which concluded on December 9. Why was I holding my tongue? Although the year’s theme was “Improve Yours,” the Council did anything but. For the third year in a row, attendees listened to irrelevant speakers prattle on about subjects of little or no interest to people with disabilities.

The Conference opened with an address from keynote speaker Mayor Mick Cornett of Oklahoma City. Yes, a city outside the bounds of Indiana. Mayor Cornett could have shared ideas that he has explored for the betterment of people with disabilities, those that Conference attendees could take back to their hometowns for application, but instead, the Mayor gave a one-hour history lesson about Oklahoma City. Granted, it was entertaining. But I wasn’t there for a comedy show – I wanted to learn something.

In the final 10 minutes or so of his presentation, Mayor Cornett discussed the fact that he put his city on a diet. He was proud to announce that his constituents had lost a collective million pounds. How did they do this? The Mayor said that he didn’t want to take anyone’s food away, so he encouraged exercise programs. He used tax dollars to extend City bike trails. Great. Let me roll down to the bike shop in my wheelchair and get on that…

Fortunately, Conference attendees don’t seem to be willing to put up with terrible conference agendas anymore. Almost immediately, the Mayor was asked about visitability. When he began to discuss tourism, his questioner explained that visitability is a housing concept. If a home is visitable, someone in a wheelchair can get inside through at least one entrance and use one restroom. Sheepishly, the Mayor said that his condo was visitable. Other questions asked from a more aggressive approach regarded public transportation and Oklahoma City’s lack of sidewalks.

After a ridiculously long 2 ½ hour break, attendees were next subjected to an hour-long speech from Dr. Mary Patterson entitled Violence as a Health Issue. Not a single time in her entire address was disability mentioned. Instead, the speech called for reducing violence by getting involved in social programs. Clearly, it was aimed for residents of inner cities. Minority members of inner cities. And those minorities did not come from the disability community. What about theft from personal care attendants? Neglect and abuse against elders and other disabled individuals? Sexual abuse from caregivers?

Although completely ignored by Dr. Patterson, again, Conference attendees were not willing to let the issues drop. State Senator Michael Crider, Reverend Charles Harrison of the Ten Point Coalition, Steve McCaffrey of Mental Health America of Indiana, Director of Public Safety Troy Riggs, Stephen Viehweg of Riley Child development Center, and Gary Mayor Karen Freeman, members of the following panel, were left feel the wrath of unhappy attendees. To their credit, both Mayor Freeman and Director Riggs attempted to provide advice and assistance to the questions they were asked. Most of the panelists were clueless.

I don’t entirely blame conference attendees – speaking gigs are gold stars on resumes, so I why them down? No, I’m too cynical. These are community leaders, and many probably do have an interest in improving services for people with disabilities. They likely had a genuine interest in being part of the conversation.

Instead, the blame rests squarely on the Council itself. After all, don’t they choose the theme and agenda? Have they been listening to feedback from a crowd that gets smaller and smaller with each passing year? Perhaps not.

Source of Income Discrimination in Indy

Monday evening the City-County Council tie voted (14-14) on Proposal 215, which would amend the Municipal Code to forbid landlords from discriminating against (potential) tenants based on source of income. In other words, a landlord could not refuse to rent to an individual solely because that individual receives support from a non-preferred source, such as the federal government. Opponents viewed this proposal as a way to force the acceptance of Section 8.

Normally, I would not support a law that reduces individual freedom. However, housing discrimination is a real problem. Right here in Indianapolis.

This November, the Fair Housing Center of Central Indiana released an audit report on Section 8 denial rates within Marion County. Of 51 tests conducted, a whopping 42 rental properties refused to accept housing vouchers. This means that only 14% of housing providers tested were willing to accept vouchers!

The audit also revealed that last year, over 7000 Marion County residents (4.6% of renters) received vouchers. The demographic breakdown of voucher recipients is as follows: 89% black, 8% white, 1% Hispanic, and 1% other; 18% had disabilities; and 31% had an individual over the age of 51 listed as the head of household.

While the audit’s findings on how race plays into discrimination were incredibly eye-opening (you really should read the entire report), I want to focus on my area of expertise – people with disabilities. As mentioned, 18% of Section 8 voucher recipients are people with disabilities. Surely, some of these individuals can probably live independently. But what about those who can’t?

Poverty and unemployment rates within the disability community are ridiculous. According to the US Department of Labor’s Office of Disability Employment Policy, only 20% of people with disabilities participate in the labor force. Of those still trying to find jobs, the unemployment rate is over 11% – more than double the unemployment rate of individuals without disabilities.

Sure, I’ve known some people with disabilities who are content to play video games and enter contests all day, at the expense of community interaction. However, the vast majority of people with disabilities that I know have sought higher education, work experience, and have hit the pavement to find employment. However, they struggle due to lack of necessary supports and, while I hate to admit it, the stigma that people with disabilities cannot perform as aptly as nondisabled employees. I don’t mean to get off track and venture into employment tangents, I want to demonstrate that not all recipients of housing assistance are lazy ne’er-do-wells.

If landlords can regularly discriminate against these people, where are they to live? Sadly, my guess is nursing homes. If people are sufficiently disabled (i.e., they need assistance with activities of daily living) and have nowhere else to go, case managers will have an obligation to help transition these individuals to a “safe” place. Adult foster care? Group homes? Nursing homes? Yes, not my idea of safe, but it’s where the difficult-to-place get placed.

So, in the way, by failing to protect the freedom of voucher recipients, we take away independence. Instead of contributing to the cost of a community-based housing voucher, taxpayers can take on the $5000+ expense of a nursing home.

And why? Because certain councillors don’t want landlords to have to accept all sources of income. The proposal does not require landlords to accept voucher holders no matter what – it merely forbids them from turning people away solely based on the source of their income. Why would a landlord reject income? Money is money. Who cares where it comes from?

Maybe the problem is not actually the money, but rather the person offering it.

Fortunately, the tie vote resulted in the proposal being sent back to the Rules and Public Policy Committee. A new hearing will be held January 27th. Talk to your Councillors and share your solutions!

“Compassion” & “Choices”: Killing People and the English Language

I’m saddened to see the Brittany Maynard story plastered all over Facebook. It’s sad that a vibrant woman, not yet 30, has been diagnosed with a terminal illness. It’s sadder that Ms. Maynard feels suicide is her best option. It’s perhaps saddest that “Compassion” & “Choices” is using the Maynard family’s crisis to promote its pro-death agenda.

Maynard and C & C are hoping to make suicide the latest viral sensation. The two are collaborating on a video project to garner support to legalize physician-assisted suicide in California. Aside from the ethical issues surrounding both suicide and involving doctors in its commission, I also object to C & C’s lobbying tactics.

In this People magazine article, Maynard is quoted as saying what she intends to do — that is, take a drug overdose, carefully measured to ensure death — does not make her suicidal. Excuse me, what? Intentionally killing one’s self is the very definition of suicide, and desiring to take that act would make one, again, definitionally suicidal.

Instead, I suspect, C & C would like us (and legislators, especially) to look upon Maynard’s plan as “death with dignity.” This relatively newly coined term has a more ambiguous definition than “suicide,” a definition that C & C surely hopes to shape, free of the ethical considerations — er, baggage — suicide brings. I’d call that the very definition of deceptive.

Merging Emerging?

In his latest INforefront blog, Chris Cotterill, proposes decimating the number of State agencies. He suggests several mergers as a starting point, one of which would entail combining the Family and Social Services Administration, Governor’s Council for People with Disabilities, and Indiana Protection and Advocacy Services. Bad idea:

Chris, ordinarily I am in favor of the recommendations that you share on the blog. Today we disagree, at least in part. Merging the GCPD and IPAS into FSSA would be a bad move for people with disabilities.


First, their constituencies are different. GCPD and IPAS are tasked (federally) with serving people with disabilities (and, arguably, their families). In contrast, FSSA serves a broader service group, and must carefully contend with taxpayers at large and provider agencies. These latter two groups have interests that may directly conflict with those of the disability community.


This creates logistical issues. IPAS has the power to sue FSSA, but a agencies don’t sue themselves. Is everyone subservient to the FSSA Secretary? Do GCPD Members still have authority to appoint staff?


Finally, who is left to be the watchdog?

Cotterill did respond, acknowledging my concerns and raising a few of his own. Part of his response was inaccurate — GCPD has actually existed in one incarnation or another for decades — while another was astute. Without improved coordination between the three bodies, people with disabilities aren’t being served as fully as possible.

Anyway, the Cotterills are good people who have served the disability community. Chris’ mother began Indiana’s Ms. Wheelchair Indiana Pageant in 2009, is a long-time supporter of the Rehabilitation Hospital of Indiana, and Editor of People on Wheels. But if merger is entertained, I hope people with disabilities are included in the discussion.

Union Encourages Abandonment of Disabled and Elderly

SEIU and I agree on one thing: good personal care attendants (also known as home health aides) deserve higher wages. We even agree on one method to bring this about — consumer-directed care. In fact, some years ago, SEIU asked me to lobby the General Assembly with them in support of expanding consumer-directed care in Indiana. Without home health care agencies reaping the majority of the approximate $25/hr Medicaid reimbursement rate (of which the best aides receive about $9/hr), the State can afford higher wages and save on overall costs.

But lately SEIU has been stabbing disabled allies in the back. First came the push to eliminate FLSA’s companionship exemption. Now SEIU is encouraging attendants to strike in support of those fast food workers seeking $15/hr wages. Great; abandoning the disabled and elderly to look afters those who are loony by choice…

Is the Party Accessible?

In the latest issue of the National Review, Reihan Salam asks: “How can Republican ideas get a hearing among minority voters?” His article, A Party for All, devotes much of its space musing on whether Rand Paul and Chris Christie’s work on criminal-justice reform might garner more productive exchanges between black voters and the Republican party. In the end, Salam argues:

[T]he best way for conservatives to appeal to African Americans is not to emphasize racially specific themes on criminal-justicee reform or any other  issue, but rather to offer a compelling message to middle- and lower-income voters of all races.  The conservative-reform agenda . . . aims to reduce the intrusiveness of government and its tendency toward excessive regulation, yet it also recognizes the importance of making the public sector work for Americans looking to climb the economic ladder.

I sincerely hope that Salam and fellow conservatives recognize that racial minorities are not the only groups worthy of extra GOP attention. Comprising approximately 20% of the population, people with disabilities are a huge voting bloc, a bloc that tends to vote liberal. Many friends with disabilities believe that Republicans do not care about them, and the GOP has done little to counter these claims. Instead, we are swept up with the “takers,” forgotten as attacks on Medicaid are waged, and — I believe — are misunderstood.

Ironically, there are many policy areas ripe for collaborative reform between people with disabilities and Republican wonks. Union demands are wrecking havoc on people with disabilities’ ability to live independently; the Obama administration is doing away with the FLSA’s companionship exemption, meaning that many caregivers will have their hours cut and individuals needing care are scrambling to find new help. Bureaucratic interference and inflexibility prevent many with disabilities from using their Medicaid long-term care hours in an efficient way; for example, since unused hours cannot be rolled-over for emergency use, many ask for more “just in case” hours which are unnecessary. And, though many are capable and desirous of employment, 96% of severely disabled individuals are unemployed.

Someone from within the GOP ought to build a ramp so my disabled pals can join the party. I think, once inside, they’d enjoy it.

What’s in a Name? Families of SMA Becomes Cure SMA

On August 25th, Kenneth Hobby and Rich Rubenstein, President and Chairman, respectively, of Families of SMA, announced that the organization would henceforth be known as Cure SMA. They emphasized that, while the Mission remains unchanged, the new name will serve as a “rallying cry” for a broader audience. Since the announcement, there has been some crying — a crying out by those adults with SMA who take personal offense to the change.

Before the disability rights movement, people with disabilities were looked on as broken beings, in need of medical intervention, desperate for a cure. They were abnormal under this paradigm, known as the medical model. With the disability rights movement came the social model of disability. From this perspective, disabilities are a part of human variation, and their limiting effects are largely due to society’s failure to accommodate. Society is responsible for problems accompanying disability — not the disability, and most certainly not the person with the disability.

The social model, combined with increasing empowerment amongst members of the disability community, has led to many people with disabilities claiming that if a cure were offered, they would not take it. This view is especially common among people with genetic disabilities who have known nothing else, such as those with SMA. For them, their entire lives have been shaped by disability, and to eradicate such a contributing factor in their personhood would eliminate them.

Even if a cure were accepted, many adults have weakened to the point that cure is unfeasible. Rather than clinical trials, they need durable medical equipment, personal care services, and decent transportation. If money is directed to research rather than supports for these “lost causes,” they cannot expect a decent quality of life. And, critically, this leads others to believe these disabled lives are worth less. For the foregoing reasons, many adults with SMA take issue with the Cure SMA name.

Other adults with SMA stand (or, perhaps more accurately, sit) by the decision. Cure SMA Board Member Melissa Milinovich writes on her Facebook page:

When this idea first came to the board, I will admit, I had to do some thinking on it. I wasn’t sure how I felt about the word ‘cure’ so I had to do some soul searching. What I realized is this, everyone in the community, whether they want to admit it or not, wants a cure. That being said, it’s perfectly fine to have differing meanings of what a cure means to every individual. For example, a cure for me does not mean I’ll get up and walk; it means the progression will stop and it’s no longer something I have to worry about. I’m okay and have accepted that. On the other hand, to a newborn baby, a cure would mean that he or she would never even know what life with SMA is. I’m okay with that too!

Yet the fact remains that “cure” does have a definitive meaning in the English language. Stopping SMA’s progression is not within the definition; reversing its effects is.

The name “Families of SMA” emphasized people. It suggested support for the individuals living with the disability, whether directly or through affiliation. “Cure SMA” does suggest action, but it also transfers focus from people to the disability. Personally, I think that’s a mistake. But I would put forth that the greater mistake is Cure SMA’s failure to hear so many of its moral owners. If this “deafness” can be “cured,” I urge the organization to start there.

Throwing Water on SMA Awareness Month?

The Ice Bucket Challenge is the meme of the month. In case you’ve been living under a rock, the idea is that, if called out or “tagged” via social media, you dump a bucket of ice water on your head or donate $100 to the ALS Association. Once complete, the participant calls on friends to do the same. Interestingly, the fundraiser has been heavily critiqued.

Initially, I was frustrated because August is SMA Awareness Month. What is SMA, you ask? SMA is the acronym for spinal muscular atrophy, a muscle-wasting disease affecting individuals in their youth. Although the cause is different, SMA essentially manifests as ALS for kids. The disorder affects 1 in 6,000, and pretty much is a pain in the ass (sometimes literally) for those who have it. It’s no picnic for their families, either.

While worried that the Ice Bucket Challenge might confuse the disorders or divert SMA donations to ALS charities, until now I’d kept it to myself. I have a difficult time being nasty to those doing good works. Further, there are only twelve months in a year and far more diseases needing to be researched. Okay, I thought, neuromuscular disease crips could band together.

Others did voice concern when their charities of choice were ignored. In particular, proponents of clean drinking water in third-world countries balked at Americans “wasting water.” These comments did more than irk me; they seemed a thinly-veiled attempt to divert donations. If nothing else, sour grapes are always unpleasant. The rationale of we-should-not-use-water-excessively-because-others-lack-it is nonsensical in this situation. Am I going to ship a bag of ice to Haiti? No. Do those with ALS expect people to stop walking because they can’t? No.

One criticism, however, appears quite valid. In a Telegraph article, Willard Foxton refers to the Ice Bucket Challenge as “a middle-class wet-T-shirt contest for armchair clicktivists.” Although the article does not elaborate on the phenomenon at length, “clicktivists” tend to donate social media space and time in lieu of cash. Awareness is great, but cash is king as far as non-profits go. Fortunately, many participants have started donating and dumping. 

If you’d like to help both those with ALS and SMA, consider making a donation to the Muscular Dystrophy Family Foundation or Muscular Dystrophy Association.