Scenario One:

Imagine you discover that your great-aunt, who recently died, left you $3,000. She had not told anyone she planned to leave you a small sum of money and so it comes as a complete surprise to you and the rest of your family. Because she knew you make minimum wage at your job, your aunt felt you could use the money to buy a few things you can’t afford, maybe a new television or some furniture for your apartment. She said as much in her will. What she did not know, however, was that her gift would devastate your life.

Scenario Two:

Imagine that shortly after finishing high school, you find a job at a fast food restaurant in your neighborhood. You love your job. You feel like a useful member of a team of co-workers and enjoy helping the customers who come to the restaurant. You work hard and look forward to your shifts. After six months, the manager of the store tells you she is pleased with your work and would like to increase your hours to full-time. You would love to say yes, but you cannot.

What’s key to these scenarios?

As an adult American diagnosed with Down syndrome, you are allowed no more than $2,000 in savings in order to keep your Social Security income, your Medicaid health insurance and even, in many instances, your housing and your job. You are not getting rich on your SSI. In Ohio, for example, the maximum you can receive is about $700 a month. Overwhelmingly, your employment options will earn you at most minimum wage (currently $7.85 an hour in Ohio) and if you are working at a Medicaid-subsidized group program, you might only receive a small stipend.

But you want to work; you want to be able to afford things that most Americans take for granted—new clothes, glasses that fit your face, furniture for your apartment, maybe even a down payment on a home of your own. You are a contributing member of society and just want the opportunity to work without the fear of losing the safety net that is so pivotal to your health and independence.

These scenarios and others like them really happen. All. The. Time. The Upside of Downs, a Northeast Ohio support group for people with Down syndrome and their families, regularly receives phone calls from frantic families as they grapple with the sudden loss of so many important things for their child or sibling because of a mere $2,000 windfall or a child who worked too many hours one month and, as a result, are denied Medicaid benefits the following month. Without Medicaid, prescription drugs are often beyond the financial means of an adult with Down syndrome. Furthermore, housing and vocational waivers are provided through Medicaid and their loss could leave you homeless, with no where to go.

Not What Grew Up With

Growing up, I did not know children with Down syndrome because in the 1960s and ‘70s, institutionalization was still common and mainstreaming was not. I first met adults with Down syndrome in the 1980s when the institutions were closing and group homes were opening. I believed the abilities and behaviors of those adults I first met represented the norm for someone diagnosed with Down syndrome. I was terribly wrong. What I observed was primarily the effects of lifelong institutionalization, often from infancy.

I regularly catch myself remarking, with some surprise, “Wow, Lyra is so bright!” and then I wonder why am I surprised. Lyra lives in a rich home environment with two loving parents and four adoring brothers. Twice monthly she works with her team of three therapists: speech, physical and occupational. Our days take into account how to help Lyra overcome her primary challenge—not her cognitive abilities, far from it—but her hypotonia, which affects her speech, her mobility and her fine motor skills (think pincer grip). Lyra is socially engaged, full of speech, both spoken and signed, and eager to learn.

Truly, as a mother of four older children, the only substantial delays I see in Lyra right now are her size (wee, teeny peanut) and her low muscle tone. I fully expect her to read, go to college, drive a car, live on her own and have a rewarding job. She may marry and, yes, even have a child of her own. This is not the Down syndrome of my childhood,when babies where locked away and processed en masse in ways that did not allow anything near the full development children with Down syndrome are capable of. Why would it?  Early and continuous institutionalization stunts the full development of all children, including those with the typical number of chromosomes.

Achieving a Better Life Experience (ABLE) Act of 2013 

For nearly ten years, organizations such as the National Down Syndrome Society (NDSS), activists and self-advocates (persons with Downs syndrome who speak out about the issues they face) have worked on a bill known as the ABLE Act. In short, the ABLE Act would allow people with Down syndrome and other disabilities to have tax-free savings accounts as an expansion of the existing IRS 529 rules, currently used to save for college tuition. Similarly, the ABLE Act 529 accounts would allow people with Down syndrome to save for qualifying expenses such as housing, transportation and medical costs. Most importantly, people could keep up to $100,000 in their ABLE account to supplement their current governmental benefits without fear losing those benefits.

Wow! $100,000 sounds like a lot of money!

Yes, if given $100,000 in one tax-free, lump sum that would be a whole heap of cash. But consider this: When Max and I graduated from high school in the mid-1980s, the life expectancy for someone born with Down syndrome was twenty-five years. Putting aside the distressing idea of losing any child in their twenties, that life expectancy would mean that even though we had Lyra in our mid-forties, we could expect to outlive and continuously provide for her as needed. Now, just thirty years later, the life expectancy for babies born with Down syndrome is sixty years (and rising). No matter how healthy our lifestyle, it’s safe to assume that Max and I will not be centenarians.

So what happens to our daughter when we are gone? How do we plan for her? Just as importantly, how do we assist our other children, Lyra’s four brothers, who will care for her when we are no longer here? She may outlive us by many decades, in which case $100,000 no longer sounds like all that much money to work with.

And this is what Jules and I told our elected officials in Washington D.C. on February 27.

Meeting Old Friends for the First Time

Half an hour after we arrived at our hotel in Arlington, Virginia, Jules sat with me at one of the two tables reserved for Ohio activists, mostly parents, but also siblings and self-advocates. We listened to members of the NDSS discuss the importance of the ABLE Act, the Congressional Down Syndrome Caucus and the intersection between Down syndrome and Alzheimer’s disease before a presenter from Soapbox Consulting coached us on how to talk about these topics with our legislators and their staff members.

And then we had what felt like a family reunion. Because of the Internet, I know many people who have children with the diagnosis of Down syndrome. After our training session, I hugged people with whom I have had online conversations but never met in person, including Jenny Jacobs. Jenny had the brilliant idea to start a Facebook group for families with children who were born in 2012 and 2013 with the diagnosis of Down syndrome. This Facebook group is an amazing resource for information and support, creating a virtual community to turn to with questions, concerns and celebrations at all stages of our children’s development.

When first invited to join this Facebook group, by another mom who lives in Northeast Ohio, I thought it was a local group and all the members posting lived nearby. It was only when a woman with whom I had several exchanges mentioned that she lived in Oakland, California, did I realize that the group was national. At dinner that first night, Jenny told me that it is actually international, as it includes families in Canada and Australia.

The Oakland mama powers out mighty essay after mighty essay on her blog, KimchiLatkes, many of which I have shared on my Facebook wall. Back in December, she told me about the NDSS conference and legislative “march” in support of the ABLE Act. She also invited us to share her hotel room. I have never participated in dating websites such as Match.com or eHarmony, but I suspect I know what it feels like to first meet someone with whom you have had many email conversations, shared photos, and possibly even a few phone calls. I wondered how my Oakland friend and I would find each other—would we like each other as much in person as we seemed to whenever it was convenient to chat online? In this instance, it turns out the online relationship was a good predictor: two nights in a row, for hours after our babies and Jules had fallen asleep, we laid on each of our beds in the dark hotel room and talked like middle school girls at a sleepover.

Meet and Greet on Capitol Hill

Our task was pretty simple. We needed to ask our Ohio legislators to:

• Co-sponsor the ABLE Act or thank them if they already have.
• Sign a letter requesting that the ABLE Act be brought to the House or Senate floor for a vote as soon as possible.
• Sign a letter urging a hearing on, and funding for the research of, the intersection between Down syndrome and Alzheimer’s disease.
• And finally, to join the Congressional Down Syndrome Caucus (House members only).

Of the four legislators we were scheduled to meet with, three were already co-sponsors of the bill and happily agreed to sign a letter urging the ABLE Act up be brought up for a vote. One congressman was already on the Congressional Down Syndrome Caucus, and the other, a newly elected member, seemed open to the idea. All four listened to the information we gave them on the intersection of Down syndrome and Alzheimer’s.

Dear Readers: We need your help!

The only outlier in all this was Senator Rob Portman, a Republican from southern Ohio. His aide insisted that Senator Portman supports the ABLE Act philosophically, but will not commit to co-sponsoring the legislation until he learns the Congressional Budget Office’s (CBO) analysis of what these tax-free savings accounts would cost the federal government in lost tax revenue.

The people I spoke with at the march believe the CBO’s number would come in between one to one and a half billion dollars a year. But that number strictly looks at lost tax revenue. It does not take into account the taxes that would be paid by adults with Down syndrome who are able to work as many hours as they wish without fear of losing their needed benefits. Nor does it take into account differences that are more difficult to tease out with standard accounting, such as loss of sibling income and, therefore, tax revenue, as families must currently make hard choices on how to care for their brothers or sisters with Down syndrome.

Fellow Ohioans, please call Senator Portman’s office and let him know that the benefits of the ABLE Act far outweigh the costs and that it is not unreasonable to consider the ABLE Act budget tax-neutral for all the reasons mentioned above.

Fellow Americans in other states, please visit this NDSS link, which not only discusses the ABLE Act in detail, but also contains links that identify which senators and representatives, state by state, have co-sponsored the ABLE Act. Please check and see if your legislators are co-sponsors and if not, contact them and ask them to consider doing so.

There is nothing wrong with families caring for one another. But families should not be restricted in their ability to do so because one member is diagnosed with Down syndrome. Adults with Down syndrome should not have to choose between employment opportunities, including how many hours they work, or Medicaid. Adults with Down syndrome need to be able to work meaningful jobs,  save the money they earn, and live to their highest potential. And when that happens, so too will it no longer be surprising for adults with Down syndrome to lead lives that look little different than yours or mine.