What Does 'Fair' Mean When One Son Has Down Syndrome?
07/18/2013 - 13:33
Allison Wohl
Ben Wohl and Julian Wohl
Ben Wohl and Julian Wohl

Our six year-old has been spending a lot of energy on the concept of “fairness,” as many six year-olds do. To him, fairness is about resources, and he spends his time thinking about what’s fair in terms of his share compared with what is allocated to his younger brother, who is three.

"It's not fair," he says. "He's had the iPad all morning." We try to explain that Julian is 3 and he is 6, and he can do a lot of other things.

But the bottom line is, there is nothing fair about their lives, as his younger brother was born with Down syndrome.

Of course, the inequitable distribution of resources has long been a pressing concern not only of my six-year-old’s. No less a force than the Civil Rights movement strove to address this problem. President Johnson’s War on Poverty introduced many government reforms aimed at providing equality of opportunity for those who had experienced historic disadvantages due to economic injustice. Since then, significant gains have been made by many groups: women, people of color, those with disabilities.

Yet some of the Civil Rights-era reforms intended to empower Americans with disabilities have ensnared them in lives of permanent dependency. Such laws simply have not been adapted for this century and are built on an outdated concept of individuals with disabilities as helpless, hopeless and incompetent.

The Supplemental Security Income Act of 1972, for example, forces people with disabilities to limit their assets in order to maintain their governmental benefits, such as income supports and healthcare. They are effectively driven into poverty and kept there so that they can receive the very benefits necessary for survival. In order to receive Supplemental Security Income (SSI) – the gateway to Medicaid, which provides supports and services such as job coaching, housing, transportation and health care – Americans with disabilities cannot accumulate more than $2,000 in assets at any one time. They are also subject to income limitations.

When our son was born, we had to disinherit him and his grandparents had to do the same so that he won’t accrue assets that may disqualify him for SSI when he’s 21. His bar mitzvah invitations will have to request that he not receive cash gifts for the same reason. We have no choice. He is three years old. This is neither equitable, nor fair.

What’s worse is that employers of those with disabilities, though not themselves disabled, profit mightily from certain government policies. Part of this system of supports and services was created even before the Civil Rights era, and for another time altogether – a time when those with disabilities lived short lives of desperation, often far removed from their families and society.

The Fair Labor Standards Act of 1938 carved out an exemption for employers that allows them to pay less than minimum wage to workers with disabilities. This was premised on the notion that workers with disabilities are less productive than those without.

This exception – known as “14c” is alive and well in 2013 – and utilized mostly by sheltered workshop providers who “employ” hundreds of thousands of Americans with disabilities in this country and reap great profits from the law. Sheltered workshops are entities that employ workers with disabilities exclusively or primarily in segregated settings apart from non-disabled workers often doing menial tasks like sorting at sub-minimum wages. Very few individuals placed in sheltered workshops ever leave them to move to jobs in integrated settings at minimum wage or better.

The time has come not only for equity but also for fairness for Americans with disabilities. As my friend and colleague, Ari Ne’man, remarked, “We make adjustments and accommodations, we add services and we individualize programs as necessary – but the point of what we are doing is not to create something special – it is to create something equal. Justice, not charity.” Indeed, the word that may best capture what is needed is the Hebrew word tzedakah, which literally means “justice.”

Our system has created something “special” and by extension, unfair. Someday, I hope to be able to explain to our older son that while the circumstances of him and his brother’s lives will be more equitable, and far more fair.

Allison Wohl is the Executive Director of the Collaboration to Promote Self-Determination, a coalition of eighteen national disability groups that advocates for reform of the public systems of supports for citizens with disabilities. Allison earned an MBA in 2002 from the College of William and Mary and worked for GE Capital and then two large consulting firms, doing management consulting at federal agencies. She is actively involved in the Down syndrome community and volunteers for local and national advocacy organizations. She is the parent of a toddler who has Down syndrome.

Comments

Thanks for your comment. We actually do have a special needs trust, but it is taxed at the highest rate--39%. And of course it's expensive and most families can't afford one. That's why the ABLE Act is so important. It would give any family the ability to save with a tax-free savings vehicle, just like they can for their typically-developing children. The ABLE Act would add a provision to the 529 code that would allow up to $100 k of savings without losing benefits. It is an end-run around the SSI asset limitation, which the SSA seems to have no interest in changing.

As a lawyer, I would encourage you to look into special needs trusts for your son. Also, I think that the issue of access to Medicaid will be improved under the ACA expansion of Medicaid as long as you live in a state which is doing that. Also money that is spent on someone who receives SSI can be spent on things to meet his needs as long as it isn't food, clothing, or shelter. I know that the $2,000 limit is ridiculous and very outdated and also very frustrating for families. My step-daughter used that benefit and we had to be careful not to violate the rules as you are. We have tried to reform SSI many times and the best we've gotten is the Ticket to Work and other incentives that almost require that the disabled person hires an accountant to figure it out.

However, I will say, that since I have been doing disability advocacy for 40 years, these kinds of limitations in the law are not what we wanted back then. They have been added by the more conservative members of Congress who write laws based on the idea that many people are going to cheat the system. And they don't want it to appear that they are giving away money to people who "don't really need it". This has gotten even worse in the past few years.

The sheltered workshop issues are a different matter and I think we should work to change them.

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