How our Healthcare System makes disabled people into paupers

It is August and I must re certify again that my 6-year old son, Geoffrey, is destitute and that our family doesn’t make too much money. It will be easier this year as I emptied his child’s savings account late last year.

Why, you might ask?

Every year, we need to do three things to keep our son’s access to MediCal insurance to help cover his health services for autism active:

1. We need to prove (every year), that he still has autism to our California’s disability system (in our case, Golden Gate Regional Center) and that he is using some of there services… this one is coming in late September.

2. We need to do that to keep his healthcare referral for autism to California’s Medi-Cal program (California’s version of Medicaid). We re-certify his autism diagnosis with Medi-Cal every year in January or February.

3. And, now, each year, in August we prove once again, that Geoffrey is sufficiently poor (and we aren’t too wealthy) to qualify for Medi-Cal. This is less of a crisis, but critical in for the long term for him.

Why did we make sure our son is broke?

Why go through this … every year?

See episode details.

Well, I have a question for you – do you know what your “out of pocket maximum” is for your health insurance?

I’m your host, Steven Davis and welcome to Episode 6 of Disability Democracy Radio. This weekly podcast is about practical actions we can take – that YOU can take – to make a difference in your community. The goal of Disability Democracy Radio is to accelerate the disability community revolution. Find out more at disabilitydemocracy.org.

2017 was quite a year for our family. It was the first year that my son was qualified for all of the services for his autism diagnosis. It was also the year both my parents had heart surgery.

Everyone is fine.

But, guess who hit their out-of-pocket maximum for health insurance?

Not my parents.

We did.

My son gets a raft of services through our health insurance because of his disability. He qualifies for 16 hours a week of behavior therapy, an hour of speech therapy. For a while, he also had an hour a week of occupational therapy.

18 hours a week.

Plus school.

Basically, at age 6, Geoffrey has a full time, 40 hour a week job.

He also has a co-pay or two every day for each service.

$30 or so. Each.

In a typical year, Geoffrey hits his “out-of-pocket” maximum before April.

Even with good insurance, that is several thousand dollars. Our numbers are pretty good… the average additional costs per year for a family of a child with autism is around $5,000…

And that is where Medi-Cal / Medicaid comes in.

For us, as a pretty solidly middle-class family with pretty good health insurance, Medi-Call takes care of $2000 to $3000 in co-pays.

By the way, we are lucky. There are many disabilities and illnesses that don’t. Welcome to US Healthcare Roulette . For those families, there are grim choices.

But, as long as we qualify, we’re OK. For us, it would be harder, but do-able if Geoffrey lost Medi-Cal.

And, it gives us an emergency safety net to take care of Geoffrey if anything goes wrong with our health insurance..

And that is only the beginning.

Once Geoffrey is an adult and if he needs full disability services, he may be eligible for Supplemental Social Security to provide basic income and MedicAID.

It is a safety net for Geoffrey and other people with serious disabilities, but it is also a trap.

You have to be “poor” to access these services.

Because, instead of handling disability services as a standard form of insurance, like MedicCare or standard Social Security, it is treated as an “assistance program” through MediCaid.

And that makes all the difference.

Because America hates poor people.

We treat them like they are lazy.

We treat them like they are going to scam the system.

If you are a bit older, you might remember the “Welfare Queen” stories back in the 1980s?

Welfare queens were, so the story usually goes African American women, who allegedly were scamming the welfare system. Pretending they had tons of kids and turning the our social assistance programs into a great lifestyle. Driving Cadillac’s. Living in luxury.

There may have been one person who did this. The story was essentially a lie. Both racist and an attack on our social assistance programs.

The number of people who defraud our assistance programs is very, very low.

And there is a huge cost both in the system itself and to the individuals who need assistance to try to eliminate fraud.

But, because of the misconception that poor people are lazy crooks out to scam the system to live high on the hog of government benefits, the government puts lots of hoops for people to jump through to qualify for any sort of “assistance” services.

So, while my autistic son was born autistic and likely will be autistic his entire life, we get to prove to the government that he is autistic every year… you know, in case we are going to defraud the system.

And, once he is an adult and if he still needs support services, we’ll likely need to do this for both Supplemental Social Security AND MedicAid.

We aren’t there yet and maybe we won’t be, but I’m certain that we’ll have to do all of this paperwork for each service ever year.

If we forget or something gets screwed up, he may lose his benefits and have to start again.

So, we have to keep him poor.

We have to be very, very careful that he never gets much money.

And, because of the review process every year, we basically are better off making sure he doesn’t have any assets in his name.

There are a couple of tools to keep him from being totally destitute.

First, there are ABLE accounts which are a savings program similar to those for college. You should definitely set one of these up if you or your child are qualified. It is easy. It is quick. Go set up an ABLE account now! Seriously. They are a great tool. Hit pause on this podcast. I’ll wait.

It gives a basic core of savings. But it is limited.

Next, if you have any assets, like a house or stocks or any other savings that you want your disabled child (or later disabled adult) to have or inherit, you must set up a “Special Needs Trust”. Yes, it is actually called a “Special Needs Trust”. This basically allows you to put assets for the benefit of a disabled person in a place where it won’t affect their eligibility for services.

You need a lawyer. Another way the system is set up to make things difficult and discriminatory.

But, what if my son want’s to work? Or get married?

Just a reminder that full episode transcripts and additional resources are available at disabilitydemocracy.org. We welcome your comments, feedback, and suggestions. Let us know how we can make Disability Democracy Radio more accessible and actionable for you.

The ttile of this episode is “Why I impoverished my son – How our Healthcare System makes disabled people into paupers”. It is based on the title of an essay “Why I burned my book” by the disability rights advocate Paul K. Longmore. The essay was written in the early 1990s, almost 30 years ago.

In the essay, Dr. Longmore talked about how our disability assistance system actually worked from the inside. It is well worth reading. He talks about his experience as a man with a serious physical disability and his difficulty getting a good education… he ultimately earned a PhD… and then that he basically couldn’t work or he would die because he couldn’t afford to pay for his necessary healthcare services himself so that the only way to keep those services was to NOT work.

Marriage worked the same way. Marry someone with ANY economic assets (you know, like a job), and you lose your access to disability services.

Pathetic paupers by design.

Almost 30 years later, and this is still largely true.

No job. No marriage.

We. Us. Our system will kind of let disabled people stay alive.

This is what we have built.

Now maybe you’re thinking.. Wow, Steve, that is terrible. Tough for you and your kid.

Maybe you’ll even write a check. Or sign a petition or something.

But you’ll think “Whew, Thank God, that doesn’t affect me”.

It does… or it could.

If you live long enough, you may need serious, ongoing healthcare assistance. Maybe even need to live in a nursing home.

Are you rich?

If not, you are going to have to get yourself poor.

Because, just like with disability, elder care isn’t an insurance program in the US, it is an assistance program.

And you basically, have to be poor to qualify.

My grandfather, Edwin Brinckmann, my Mom’s dad, was a hard worker. He was a career accountant for the US Army starting before World War 2. He worked his way up from nothing. No college degree and he retired a full Colonel. And then he went on to a long successful career in the civil service… ultimately, he had two full pensions for him and my grandmother. Sadly, he died in the mid 1970s. I only met him a couple of times. But, he had done a good job saving for my grandmother.

When she developed Alzheimer’s in the early 1980s, my Mom moved her from her condo in Florida to California. My Mom encountered these same systems. That even though my grandfather had done a great job to ensure a good financial future for my grandmother and a legacy for his kids, there was no way he could have anticipated the costs of care for someone with dementia.

My mom went through the process of emptying my grandparent’s estate and running down my grandmother’s assets so that she could afford to be poor enough to qualify for Medicaid.

This happens to many families. And, now, while the system won’t necessarily take away your house while your alive, they may seize it and any other remaining assets to pay-off the assistance you’ve used.

No legacy for your family. Just ashes and dust.

So, what can you do?

Well, there are the same kinds of tactics that we’ve used for my son. Using lawyers and such to take away assets so there is nothing to get.

Of course, the government. Our government. Our systems are always getting better at making sure “assistance is paid for”.

Or we can start thinking of healthcare and disability care for the elderly and disabled as collective insurance for everyone.

And decriminalize our “assistance” programs driven by pity and contempt.

Allow kids like my son to grow up, work, marry, and be as productive a member of society as they can be.

And our parents, and eventually us if we’re lucky, to end our lives with good healthcare and able to leave a legacy to our families.

This episode of Disability Democracy Radio was sponsored by Not Without Us. Not Without Us is a 501c4 mutual benefit corporation. Our goal is equality for all disabled adults and kids with disabilities. You can learn more about our work at notwithoutus.org. Our strategy is built on democratic action – whether it is providing support for disability organizations and allies through our directory at disabilitydemocracy.org, training aspiring local candidates for office, endorsing candidates, or directly working on issues.

We’d like to thank Deborah Fields and Dennis P. McBride, for their contributions to Not Without Us. You can support Not Without Us with an annual, monthly or one-time donation at notwithoutus.org/join. If you have any questions or comments on this episode, visit disabilitydeomcracy.org – you can email us, leave a comment, or even a voice message. I’m Steven Davis and on behalf of Not Without Us, we think that democracy comes not from a vote every two years, but from the actions we can take every day.