Interview

The Bipartisan Attack on People with Disabilities: ‘If This Passes, My Children Will Have a Tougher Life Than I Had’

Editor’s note: This interview was edited for clarity and length.  To listen to the full interview or read the full transcript, visit the Off-Kilter podcast page on Medium.

While all eyes were focused on the latest effort by conservatives to take away your health care, Congress quietly advanced a bill that would roll back the civil rights of people with disabilities by exactly 27 years—to a time before the Americans with Disabilities Act. The ADA Education and Reform Act of 2017 would create onerous red tape for people with disabilities attempting to enforce their rights under Title III the ADA (the part of the statute that applies to places of public accommodation). It would not only shift the burden of compliance from business owners to people with disabilities, but would allow businesses to delay compliance with a decades-old civil rights law for months—if not years.

I spoke with Rebecca Cokley, a Senior Fellow at the Center for American Progress and the former Executive Director of the National Council on Disability, about the stakes of this fight for people with disabilities and allies.

Rebecca  Vallas: So the bill is misleadingly titled “The ADA Education and Reform Act of 2017”. It should probably be called the “Let’s throw the ADA in the sewer and stomp on it with really high sharp heels bill of 2017”. Is that a fair characterization and what would the bill do?

Rebecca Cokley: I think that’s more than fair—and after we step on it with some high heels we’re going to stick it in a paper shredder and then use that to line a bird cage. The bill itself would actually push back requirements around accessibility and accommodations. [The Americans with Disabilities Act] has been the law for 27 years. We’ve had whole generations grow up that have never understood life before it. And what this would do is: a) it would put the onus much more on people with disabilities to prove discrimination in very tedious ways, and b) it would then allow business even more time, a minimum of an additional six months after a complaint is filed, not even to remedy the barrier but to “make substantial progress.” So that could mean instead of having an actual ramp so people could access a place,  somebody could come out and tell them what the ramp would cost.

RV: So say you are a person who uses a power wheelchair, and you get to a building and you find you can’t get inside. And you want to enforce your rights under the ADA.  What new hoops would you have to jump through under this proposal?

RC: The way the complaint process will actually shift is it will require such technical language that the average person with a disability is not going to feel qualified or empowered enough to even understand where in the law their particular situation might fit.

RV: So is what we expect to happen basically the lack of enforcement of a law that’s been the law of the land for 27 years? Is that eventually where this heads?

RC: I think there’s no other destination for it to head than that.

RV: You are a member of what’s often called the ADA generation and I would love for you to paint a picture of what life looked like before 1990—and before the ADA was in place.

RC: I’m part of the 20 percent of people with disabilities that grew up with parents with the same disability that they had. My dad became paralyzed when I was a year and a half and both my parents were little people. I remember my mom being denied tenure because she could only use the bottom six inches of a chalkboard. That was actually used to deny her tenure at the college that she had worked for decades. I remember wanting to go places with my dad who used a wheelchair and not being able to enter buildings. I remember my dad wanting to go vote and them having to bring the ballot out to his car and him getting really upset. He had been very active in voting rights issues in the south and was upset that in 1988 he couldn’t vote for the presidential election the same way that everybody in his family could.

RV: So how did the ADA change things?

RC: I think for so many people with disabilities you don’t even think about it anymore. And people without disabilities don’t even think about it anymore. You’re walking down the street managing your luggage and you take it down a curb cut, which is typically the example people tend to use. Or trying to get suitcases up a flight of stairs and there’s a ramp. The ADA really did a number of different things that were historic, the first of which was laying out a definition of disability that was not based on an inability to work or a requirement for health care. It was really talking about having a condition that affected the activities of daily living.

So let’s say you are a burn victim, and it doesn’t impact your ability to do your job but you are still discriminated against because you’re perceived as a person with a disability. Or you have a history of impairment—if you’re an individual who had a substance abuse addiction and were in rehab and had come through recovery, you still have that past history that qualifies you as a person with a disability. So it really cast a net that included millions of individuals with similar experiences tied to being historically discriminated against.

RV: Attacks on the ADA are nothing new, but this latest wave is actually gaining steam in Congress. This comes on the heels of a 60 Minutes piece that alleges widespread so-called frivolous lawsuits—people with disabilities who didn’t actually face discrimination but are just trying to milk the system and maybe even get money out of it.   Don’t we need to rein in frivolous lawsuits?

RC: Even in the original statute, there is means for dealing with frivolous lawsuits. State courts and state bar associations can punish attorneys who are filing lawsuits that are proved to be frivolous.

RV: So who is behind this bill and what’s really going on here?

'At what point are they going to have to comply with the law?'

RC: It’s important to note that both Democrats and Republicans are behind this bill. We continue to talk about disability rights being a bipartisan issue, but we’re also under bipartisan attack. You know we continue to hear that business feels attacked because they’ve been asked to comply with the ADA every year for the last 27 years. But the idea that after 27 years they should have even more time and then still refuse to be accessible—at what point are they going to have to comply with the law? Or are we just going to keep creating a slippery and slipperier and slipperiest slope—but actually not a slope because we’re not about accessibility, so a staircase.

RV: The 60 Minutes piece is part of a pattern of media coverage of pretty much only knowing, with very few exceptions, how to paint people with disabilities as takers or abusers of a system that they see a way to take advantage of. Am I off base here?

RC: Not at all.  I think there really is a myth that people with disabilities are collecting monetary damages off of this. It is not like you have a bunch of disabled veterans swimming in Scrooge McDuck’s money bin based on ADA lawsuits. People cannot collect monetary damages on these claims. All you can do—the only remedy that’s available—is having that place made accessible.

RV: Attorney’s fees and some [compensation] for their time, but that was intentionally done to enable people to find lawyers who are willing to take those cases.

RC: Exactly. The disability community is a poor community— 50 percent of people with disabilities live at or below the poverty level.

RV: So is the fight that people with disabilities are facing in 2017 categorically different from what other groups that face discrimination are [fighting] at this point in time?

RC: In some ways yes, in some ways no. I think I can connect it most easily with how several of our allies in communities of color felt about the rollback of affirmative action programs. You want your children to have a better future than you. You want your children to have better access to services, to programs, to school, to the world. And if this passes, my children are going to have a tougher life than I had, and that just doesn’t seem right.

RV: And it doesn’t seem very American.

RC: No, not at all.

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First Person

Home Visiting Helped Me Learn How to Parent. Congress Is About to Let It Expire.

In the summer of 2003, at the age of 18, I gave birth to my first child. A week after her birth, I learned I would have a harder path ahead than I had expected: The doctors told me that my daughter was born with a rare genetic condition called medium chain acyl CoA dehydrogenase deficiency. My heart sunk—14 years later, those words still ring in my ears.

I was scared. I worried that other things might go wrong with her after I learned about her medical condition. I started to look for resources, anything that would help me learn to be a good mother. I started a “baby and me” class at the hospital, and I was eventually referred to Parents as Teachers, an evidence-based home visiting program where a trained professional visited my home every week.

My home visitor helped with every aspect of parenting—connecting me to a dietitian who could treat my daughter’s disorder, helping me access WIC so that my baby and I could afford to eat, and helping me learn about my baby’s development.

My baby’s metabolic disorder required her to be fed specific macronutrients every 2 hours. She required breast feeding until she was 16 months, and as she grew older I had to count calories, plan her diet, and account for every gram of fat she ate to keep her blood sugar balanced. It was a lot for me, as a young mother with a husband in the military. But my home visitor was there for me in a way that no one else was—she had time to listen to my feelings, and to talk through everything that was going on with my daughter.

I participated in Parents as Teachers for four months until my husband went back into the military and our little family moved from Idaho to Kansas. Even in that short period of time, I felt like I had learned so much about parenting.

My home visitor was there for me in a way that no one else was

Not long after we moved to Kansas, my husband was injured in combat during Operation Iraqi freedom. Then, in the spring of 2006, our second child was born. That pregnancy had a lot of complications that put me on bed rest, until I went into preterm labor 11 weeks before my son’s due date. There were a lot of shots, appointments, and a couple of hospital stays. But this time, I was able to participate in a local health district home visiting program during my pregnancy. I learned a lot about fetal development, and felt much more prepared for baby number two than I was for baby number one.

2007 brought baby number three, my second son, into our lives. He had a lot of age delays; he was hardly talking when he started Head Start at age 4. One day, his home visitor showed me that he was tongue tied. No doctor had mentioned that before—they’d all missed it. But she spent enough time with him to notice it, and she had the experience to know what it was. When he got his tonsils removed, they clipped his tongue to fix the problem, and his language development came quickly after that.

The thing about home visiting is that it’s not just about children. My home visitors made sure my kids were developing, but they helped me grow, too. We made family goals, and I found myself on the path to higher education. I knew that going to school was my only chance at a future where I could make enough money to support our little family.

So in 2010, when baby number four graced us with his presence, I went to college. I was accepted to the University of Idaho and granted an Operation Education Scholarship, which paid for the rest of my college education as well as living expenses so I would be able to focus on school and raising my children.

When I graduated, I became an Early Head Start teacher. Now I’m a home visitor with Parents as Teachers.

I’ve had 11 different home visitors as a mother. Being able to do the same work that I’d found so valuable makes me feel accomplished. But now, funding for home visiting—Maternal Infant Early Childhood Home Visitation grants (MIECHV)—is about to run out, and Congress’s plan to renew it would come at the expense of hundreds of thousands of people who depend on Social Security.  That violates the entire spirit of the program, which is designed to support families and communities.

The bottom line is, we know home visiting works. It makes sense for taxpayers, since research shows that every taxpayer dollar invested in home visiting programs can return up to $5.70. And as a mother who relied on home visiting, and a home visitor myself, I know how impactful it can be. It changed my life and my children’s lives, and if home visiting is expanded the right way, it has the ability to uplift an entire generation of American families.

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Analysis

Study Shows Kids’ Test Scores Drop When Their Food Stamps Run Out

Last week, researchers released a new study that confirms what every student, teacher, parent, and human being with a stomach already knew: It’s harder to think when you’re hungry.

The study’s authors matched up the timing of math tests in South Carolina to the dates when low-income students’ families received monthly Supplemental Nutrition Assistance Program benefits (or SNAP, formerly known as food stamps). They found that kids’ test scores dropped at times of the month when nutrition benefits had run out. Put another way, access to SNAP substantially improves students’ academic performance—but only when there are actually enough benefits for families to be able to eat.

Running out of SNAP benefits isn’t an anomaly—nearly half of participating families run out before the end of the month. That means many students who receive SNAP see their academic performance dip every single month, and then rebound once their families receive more benefits. That’s not surprising, since SNAP benefits average just $1.40 per person per meal; it’s such a gross underestimation of food cost that nearly 80 percent of benefits are spent in the first two weeks. School meals provide a little bit of a buffer—in fact, kids get as many as half their calories from the National School Lunch and School Breakfast Programs—but these programs aren’t designed to provide all the food a child needs to survive. Plus, they can’t reach kids on weekends or during the summer months.

Many students who receive SNAP see their academic performance dip every single month

This new research adds to a wealth of evidence that hunger hampers kids’ ability to learn, holds back their development of social skills, and leads to behavioral problems. And it complements many careful studies that find that access to SNAP and other programs that provide basic living standards have large, positive effects on kids’ long-term outcomes.

What’s new and different about this paper, though, is that it demonstrates the immediate difference SNAP makes to kids, rather than the long-term effects. And it joins a small but growing body of research that examines how the economic insecurity many families experience on a month-to month—or even week-to-week—basis negatively impacts their lives.

This study also reveals a massive missed opportunity: For the modest cost of boosting SNAP benefits so that they’re enough to last all month—about $15 billion per year—the US could dramatically reduce hunger and significantly boost academic achievement and educational attainment for low-income students. That’s a fraction of what Trump has proposed in tax cuts: It adds up to $1 of food benefits for every $29 he wants to give to wealthy corporations and business owners.

Instead, President Trump wants to slash SNAP by a whopping 29 percent over the next decade. That could mean an average of 3.6 million families—including roughly 1.9 million families with children—would lose access to food assistance each year. Not to be outdone, House Republicans propose cutting SNAP by 42 percent between 2023 and 2027, which could leave 7 million families hungry in 2023.

The Roosevelt Institute’s Marshall Steinbaum calls out the irony here: Many elites insist—sometimes condescendingly—that education is the ticket out of poverty. If you’re poor, they imply, it’s because you should have gone to school longer to secure a higher-paying job. But while education does tend to provide some protection from poverty, this misses a key insight. Sometimes, the barrier to education is poverty itself.

It goes without saying that protecting children from hunger is far and away the most important goal of SNAP—and the only necessary one. But studies like this show that when Trump and House Republicans propose gutting programs that ensure basic living standards, they’re not just leaving kids hungry. They’re ripping away low-income kids’ chances to escape economic insecurity and experience upward economic mobility.

How can we expect our nation’s next generation to focus on a dream—especially one as ambitious as the American Dream—when they’re hungry?

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Feature

Want More Americans to Work? Give Them Medicaid.

Here in the United States, we are obsessed with work. We collectively clock 25 percent more working hours every year than people in Europe. Working hard is still considered one of the top American values, even as longer hours are no longer equated with greater wealth and have been tied to significant increases in adverse health effects such as heart disease, stroke, diabetes, and depression.

This mindset is also reflected in our national politics and apparent in the rhetoric employed by the Trump administration and the GOP in their 2018 budget proposals, which would severely cut safety-net programs.

“There’s a dignity to work, and there’s a necessity to work to help the country succeed,” White House Budget Director Mick Mulvaney told CNN at the end of May. Mulvaney added that the United States should measure its success “by the number of people we help get off of those programs and get back in charge of their own lives.”

The Department of Health and Human Services has used the same rhetoric to justify specific attacks on Medicaid. Only hours after she was sworn into her post, Seema Verma, administrator of the Centers for Medicare and Medicaid Services, and her boss, Health and Human Services Secretary Tom Price, sent out letters to all the nation’s governors urging them to impose insurance premiums on Medicaid recipients and provide work incentives.

Statements like these—and other calls to add work requirements to Medicaid eligibility guidelines—ignore the realities of who the program serves and its actual impacts. For those able-bodied people on Medicaid, the majority are already working. And for the 7 million nonelderly adults with disabilities for whom Medicaid offers primary or supplemental coverage, expanded access to Medicaid contributes to higher employment rates.

Only 19 percent of part-time workers have access to medical care benefits.

I’m one of those people. Eight years ago, I completed my master’s degree with one plan in mind: to launch a successful multi-decade career in environmental policy that would require regular overtime, frequent travel, and at least eight hours a day sitting at a desk and staring into a computer. I made this plan despite a history of sporadic health issues that tended to lay me out completely for several days every month, and debilitating headaches a few evenings every week. It wasn’t until a few years ago, when new diagnoses explained my daily struggle with overwhelming pain and fatigue, that I finally admitted to myself that my health status would prevent me from pursuing full-time work. Since then, I have survived by working a patchwork of part-time positions and freelance gigs, which has lowered my income and made me eligible for Medicaid.

And I am not alone.

According to recent data from the Bureau of Labor Statistics, 34 percent of workers with a disability were employed part-time in 2016, compared with only 18 percent of workers with no disability. Part-time jobs in the United States usually pay low hourly wages and tend not to offer crucial benefits such as health insurance: only 19 percent of part-time workers have access to medical care benefits.

For millions of disabled people in this position, the Affordable Care Act has filled a crucial need by expanding Medicaid coverage. Medicaid expansion significantly raised income requirements (by more than double) for approximately 11 million people living in the 31 states and the District of Columbia that adopted it. It also opened up enrollment to some childless adults, and dropped stringent asset limits. This meant that many more disabled people were now able to work—or work more hours and make higher wages, as well as have more savings—than prior to the expansion.

This was confirmed by a collaborative study released earlier this year that found that working-age adults who identify as having disabilities were much more likely to be employed in Medicaid expansion states than in non-expansion states.

“Having access to comprehensive insurance without having to go through a lengthy and demoralizing disability determination process is very important,” says Jean Hall, Director of the Institute for Health and Disability Policy Studies at the University of Kansas and lead author of the study. “Medicaid expansion allows people with disabilities to work more, and accumulate assets, without fear of losing their eligibility for Medicaid coverage.”

The recently-won expansion has been under continuous threat as Trump and Congressional Republicans have tried to follow through on years of promises to repeal and replace the ACA. The most recent effort, the Graham-Cassidy bill, would slash Medicaid funding and allow insurers to charge higher premiums for those with pre-existing conditions. These changes could have particularly severe consequences for people with chronic health conditions who have Medicaid through the expansion.

'My medications would cost more than I make in a month'

Kelly O’Brien of Sandusky, Ohio, has myalgic encephalomyelitis, postural orthostatic tachycardia syndrome, and peripheral neuropathy. She works part-time in a bridal shop that offers her flexible scheduling and other accommodations while she builds up a freelance writing business on the side.

“My medications would cost more than I make in a month,” says O’Brien. “Yet without my medication, I wouldn’t be able to work at all and thus wouldn’t have any income.”

Even for those who can work full time and have access to so-called comprehensive health insurance through their jobs, the price of their co-pays and deductibles for treatments to manage their conditions can erase most—if not all—of their income gains.

Take the case of 38-year-old Valéria Souza, who recently moved from Missouri back to her home state of Massachusetts. Souza has multiple sclerosis and was spending an average of $6,000 to $10,000 annually out of pocket on co-pays and deductibles to manage her illness. This was despite having what was considered a “good” health insurance plan with her former position in academia. These expenses comprised between 30 to 50 percent of her yearly income, eventually forcing her to work several part-time jobs in addition to her full-time career and forcing her to work in excess of 60 hours a week to compensate for her financial losses.

“This situation is not sustainable for someone with MS as a long-term life plan,” says Souza. “At some point, I won’t be able to work this much.”

This is one of the main reasons why Souza moved back to her home state: Massachusetts expanded Medicaid, while Missouri did not.

“I would like to know that Medicaid is available to me if and when I need it,” she says. Though, if Graham-Cassidy becomes law, that would threaten Souza’s plans.

For those of us with medical conditions that limit our ability to work full time, Medicaid is often our only option. If our government officials want more of us to have jobs, maintaining and building on Medicaid expansion is one proven way to do that. But if they cut it or scale it back in any way, the consequences for us will be severe.

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First Person

Fighting for My Life, Again, Under Trump

Content Warning: The following article contains graphic depictions of domestic violence. 

For 22 years, I did what many Americans do: I worked, I attended college, and I worked some more. I paid my taxes, I voted with my heart just as much as with my mind, and I obtained a career. I did everything right.

Then, on June 30, 2016, my fiancé shot me in the back of my head at point blank range.

As I lay dying, I watched the man I loved turn his gun on himself and take his own life. I was left for dead, but I fought for my life through unimaginable darkness, hurt, and pain. I survived. I am broken, but alive.

I think about that night a lot. I think about it because it shapes everything about my life now, and not just because the bullet fragments in the back of my head and neck leave me in pain. I think about it because the disability I have now, that I acquired with a one-second pull of a trigger, turned my life upside down.

I used to be a senior court clerk within the New York State Unified Court System. My fiancé was a New York State Court Officer-Lieutenant. Together we earned well over $150,000 per year. My career offered great benefits, a pension, and health insurance—and I was privileged enough to take them for granted.

I lost everything because my fiancé decided my life was not worth living. For the past 14 months, I fought to prove that it is: first by surviving, then by working to regain my dignity, self-worth, and independence.

Now, I find myself fighting the same battle with a different opponent. Once again, someone is deciding my life is not worth living. Except this time, it’s my president, and it’s the senators and representatives of my country telling me I have no worth.

Right now, President Donald Trump and congressional Republicans are working to pass a budget that takes desperately needed resources from the people who need them the most. In his 2018 budget, Trump proposed cutting $70 billion from Social Security Disability Insurance (SSDI), which would take away income from up to 1 million Americans with disabilities like me. The House budget, which lawmakers are trying to pass this fall, isn’t as specific but the effects could be the same.

This is not the life I worked for.

Mick Mulvaney, Trump’s budget director, justified these cuts by calling SSDI “very wasteful” and suggesting that not everyone on it is “truly disabled” and people need to “go back to work.” The thing is, I’d love to. This is not a life I wanted, this is not the life I worked for. It is the life that was forced upon me. But I’m at the mercy of those who think this was a choice.

There are a lot of things about what happened to me that I won’t ever understand. I don’t understand why my fiancé got his service weapon back after he’d struggled with his mental health, or why he decided to shoot the person he said he loved. And I don’t understand why any intelligent, self-aware individual would think that my life was a choice—a choice to live a life where food is not a guarantee, where I am never quite sure if I’ll be able to visit the doctor for life-saving treatment or if I’ll have to suffer in pain forever, until the pain paralyzes me.

I live in fear every single day that the people I elected to help me, to help America, will take my life and the lives of millions of other Americans. We are failing as a nation if we continue down this path, if we take from the weakest to feed the strong.

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