The Secret World of Disability Support

Who wins? Those with middle class parents.

Twenty-three years ago, we were on the public dole. We qualified for food benefits from Women Infant and Children (WIC), because we made the error of having our first baby while in graduate school. Two decades later, as parents of a young adult with autism, we are preparing to go back on the public dole. Technically, Ian is the person actually going on the dole since he’s the one with a disability, but it’s me who’s really filling out all the paperwork and cashing the checks.

The WIC program certainly had its stupidity — I’m happy to tell you about their weird milk requirements — but this disability system is beyond bizarre. The national and state system of support for disabled people in our country is opaque, overly reliant on parents, and as a result, regressive.

After attending a series of webinars for parents last year, I learned that my first step was to get Ian into the federal system - Social Security’s Supplemental Security Income (SSI). I spent an entire year working through phone trees, filling out forms, and going to seedy doctor’s offices without any certainty whether or not he would qualify for those benefits or how much he would get. These hurdles weren’t easy. One time we had to drive to really seedy part of Jersey to a doctor’s office in a mini-mall, who checked to see if Ian really has autism, even though I provided them with a mountain of paperwork from doctors and other professionals.

While Ian has autism, he doesn’t have cognitive challenges, so his case could have gone either way. He qualified - whew! - and then I found out for the first time that he would receive about $550 per month to be used for food, medicine, and recreation. I had asked social workers and others who guided us through this process about payments, and nobody would commit to a number.

I’m still learning all the rules regarding his payments. For example, Ian can’t ever have more $2,000 in his bank account or earn anything over their salary cap. I don’t know how much money he is allowed to earn before his benefits are cut off. I guess I’ll figure it out as I go along.

So, I went through a year of paperwork with no certainty about whether my son would actually qualify for a benefit and with no knowledge about what that benefit would be.

And now I have to start that process again. While $550 is all he will ever get from the federal government, until we get older — don’t ask me about those rules yet — the state does have two separate bureaucracies for handling benefits for disabled people. Since he qualified for SSI, he was automatically triggered for Medicaid, which then triggered his eligibility for state services. Of course, I have to go through another year of paperwork, according to the state’s handy timeline. And I have no idea what is at the end of this rainbow.

I’m told that if Ian qualifies for benefits from the state, he will get a voucher for services. The amount of this voucher is dependent on the level of disability — the more disabled you are, the more money you get. However, the parents don’t actually see that voucher or cut the checks. They have to shop for a third-party organization and then that group will fill out the paperwork and pay for services at approved activities and organizations. I hear through the rumor mill that the state will pay for college classes, swim lessons at the YMCA, housing vouchers, job coaches, and social skills classes, but I won’t know until I get to the end of this year.

On top of the mystery around qualification and benefits, this process is entirely dependent on having a parent or guardian with a significant amount time and resources.

A parent has to find the forms, know how to fill out the forms, know how to respond to the errors, be able to wait on hold with the government for up to an hour, maintain records, locate services, and interact with government agencies on a daily basis until they die. Managing an adult child’s life becomes the full time job for one parent. Only middle class families have those resources.

We do have those resources. Me. So, my son isn’t the tragedy. He’s doing just fine, and will receive all sorts of useful support in the future. However, the system should work better for those who don’t have someone like me in their corner. I suspect that middle class parents aren’t vocal about the problems in the system, because they’ve been through hell and do not have the bandwidth to advocate for others. Many fear that their children will lose benefits, if they point out problems. Maybe they are right, and I should shut my trap.

What is the best way to run a bureaucracy is an age-old question. Should government resources be doled out by an army of impartial (and incompetent) civil servants, or is it best to give the control (and responsibilities) to the beneficiaries and private organizations? Public schools or vouchers? Blue Cross or Obamacare? Harvard or Rutgers? The disability bureaucracy seems to incorporate the worst of both worlds - inefficient and unfair.

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LINKS

I am beyond tapped out, due to some negotiations with our school district and a work deadline, so I don’t have too many links today.

On the blog: Photo dump of family fun and a political discussion around recent developments

Blurring the lines between education and workforce: A proposition to ‘blur’ the boundaries between K-12, higher ed and the workforce industry