It’s been a long time since I’ve posted on the subject of Disability.   But with July being Disability Pride Month, I thought I’d put in a word or two about the perils of being a family living with disability, these days.

Perilous

As many of you know, I have an adult son who has autism and intellectual disabilities.  He has a recognized disability that is very well-documented. Since he was six months old (see what happened then at the post Our Stems Are Fragile) he has received some service or another from the State of Florida (Early Steps, Special Needs Preschool, Autism Classroom) and in his adulthood, from the Federal Government (Medicaid, Social Security, Vocational Rehabilitation.)  His latest go-round with Voc Rehab in Fall of 2023 determined that he does not possess the skills to work at this time.

We try to stay out of the limelight in the interests of protecting his privacy and safety, but there is a limit, at which even we are willing to share a bit of our story. This limit is reached when incompetence and inhumanity seem to vie for the reins of our government. 

Able -Bodied

There was a lot of talk about the concept of being “able-bodied” in the lead up to the passage yesterday of the Big Beautiful Bill.  The Bill is named ironically, or perhaps, cynically, since it contains vicious cuts to Medicaid and SNAP, two vital lifelines for people with disabilities and/or limited means.  These cuts are anything but beautiful.

But the average person, looking at my son, who is six foot two and in the prime of life and health, might very well consider him to be “able-bodied.”  This common understanding of the term disregards the fact that there is a difference between the health of the body and the skills it takes to execute the commands and demands of a steady job.

I cannot speak to the details of the bill, but I have heard “work requirements” mentioned as a litmus test for Medicaid.  This is always mentioned in connection with the concept of “able-bodied,” as if a person with a healthy and normal-looking body but a mind that functions a bit differently, is somehow much more qualified to work, that a person with a perfectly capable mind functioning in an average way, who happens to have health issues or has the need to use a wheelchair or braces to get around.

The opposite is in fact the case.  Not that I believe that my son will never work.  But I do defend his right not to have the added humiliation of failure in a workplace that expects more of him than he can possibly do.

I think this concept of “able-bodied: and “work requirement” quite nefarious.  It basically undermines the social contract we all signed up for, living in this country.  We will protect the weak, the infirm, the sick and the aged. 

Or perhaps this is no longer the way we think?

An Insult

The concept of “able-bodied” is insulting, and not only to those who have some kind of difference physically. I, myself, was born with a dislocated hip and limped for five years in pain, before having my hip replaced at a much younger age than most people.  Am I “able-bodied,” or not?  The term is especially insulting for those who have been dealt the hand of a significant difference in a critical area of life, one which threatens not only their enjoyment of life, but their full participation in it. 

The Americans with Disabilities Act was passed many years ago (but not so many that I don’t remember) under President George H.W. Bush.  It was passed to help rectify how differently people were being treated based solely on their disabilities.  People were not having their basic needs met (for example the need to go to the post office which has only stairs, not a ramp, when you get around via wheelchair.) 

People may forget, although it is seared into my memory, the photos of the protesters on the Capital steps, lying there, seemingly helpless, separated from their wheelchairs, to make a point: that without such a law and the assistance it provides, they were indeed unequal.  And this country at that time at least pretended that it stood for Equal Protection under the Law for all.

In addition, the ADA helped to fight discrimination in the workplace, where people with disabilities were being excluded, and judgments were being made about whether peoples’ skills were adequate, simply on the basis of looking at them. Much as was done to people of color and woman and other suspect classes of people.

With the passage of the ADA, discrimination against people with disabilities was supposed to be rendered a thing of the past.

But here we are again. 

Discrimination Nation

The same vile discriminatory language we once heard is being used again.  The same insinuations of cheating, once levied against the impoverished and disabled, are being raised again, even in a system with so many checks on abuse, that it enforces poverty upon those with disabilities.  The same “lift yourself up by your own bootstraps” logic is being used, to indict those lacking bootstraps, and sometimes, even boots.

Most people with disabilities have very little in their possession, due to ancient laws limiting their assets.  These laws require them to make the terrible decision, if they happen to be even remotely employable, between somehow barely earning enough to live on but not enough to pay for healthcare or receiving a pittance from the government and continuing to have health care, though living in poverty. 

We talk about the dignity of work, and isn’t that what people under the ADA fought for?  But there is also a separate dignity, which is, to be allowed to live a fruitful life, despite the inability to work.  The right to be allowed to keep yourself alive, despite the extra needs of your body or mind, despite your differences.

This is a human right which few Americans these days seem to have any regard for, and certainly not those in power.

Oh, the Inhumanity

The system is already pretty inhumane, penalizing not only asset-possession, but also marriage, which can cause an individual with disabilities to fail to qualify, because his or her spouse’s assets are ‘deemed” to be their own.  Minor children may also fail to qualify for help from the government, or their assistance may be lessened, because of their parents’ excessive assets.  Even bank accounts shared with relatives can cause the person with disabilities to lose their benefits. 

The system is full of Catch-22s.  Not to mention the plight of a generation of would-be retirees who are providing homes, without compensation, to their own disabled and aging adult children, bound together in an economic death grip.  Until the parents’ actual deaths, after which…who knows? 

As for “able-bodied” people with disabilities being [FINALLY] given an “incentive” to work in the Big Beautiful Bill (by snatching away their Medicaid if they do not do so) there is already a penalty for not working, at least here in the state of Florida, which applies even if a person has been determined by Vocational Rehab, over a period of 6-8 months, incapable of work. 

The program, euphemistically named “Ticket to Work” makes people with severe disabilities, who already qualify for assistance from Social Security, go through the added indignity of taking tests and undergoing interviews, to see if they have what it takes to hold a job.  This process reminds me of the requirement, applied to my son, that all students take the FCAT in Florida and be held back in 3^rd grade if they fail, regardless of how severe their disability may be.  Such requirements punish the child or adult for the terrible crime of having a disability.

Under Ticket to Work, if the answer to the question of whether the disabled person can work is “no”, they then must prove on an annual basis that they are still disabled, for example, autistic or still intellectually disabled.  These are not conditions that just go away.  Of course, they know these are permanent conditions, but minor details like addresses, who lives with you, and bank accounts are notoriously changeable, and therefore are used regularly to revoke payments.

Likewise, if you do not participate in this program (Ticket to Work) or are found unable to work after initial participation, you are forevermore subject to a call every year to verify your continued eligibility to Social Security. 

Not only that, but in both cases, the proof of eligibility must be given over the phone (not online, for example), in a time and manner chosen by Social Security, after sending a very broad mailed notice of the time period, narrowed to a window of about five hours, similar to that of a cable provider. 

You must wait by the phone, whether you are disabled yourself, or are speaking for a person who cannot speak for themselves.  And heaven forbid, that there should be some glitch technologically, and you miss the call.

Learning from Experience

This happened to us in March.  My iPhone was “too smart by half” as the Social Security rep on the phone at the 1-800 number told me, after I had missed the appointment and called in.  Of course, she was unable to take the information.  I had to wait to get another appointment letter in the mail, if the rep chose to send one, after reading the explanatory email the phone rep told me she had sent to him. 

This was, after all, already my second chance, having mysteriously missed a similar call in February, blissfully unaware of the propensities of my iPhone to hide unfamiliar calls and voicemails until after the caller hangs up. 

Instead of sending me a new appointment letter, the rep handed it differently.  The consequences of my inadvertent failure to pick up were draconian.  My son lost all benefits, including Medicaid, even though nothing had changed, and there was nothing new to report. 

I would not complain about these issues, except that they have happened to my family and are happening to others in similar circumstances.  And they seem to be happening more often, perhaps in response to being short-staffed after DOGE cuts.  This was the first interruption in service we had had in four years, though it would not be our last. 

I filed a request for reconsideration regarding our missed March phone call.  The appeal was granted after we had already missed two months of payments (March and April.) We did receive those payments, too, but nobody ever bothered to tell me the appeal had been received, much less granted. I had to call the 1-800 number and wait for hours before speaking to a live person,, in order to find out.  I made an in-person appointment at the local office at that time, in an abundance of caution, since we’d had so much trouble connecting by phone.  That appointment was several weeks out, in the middle of June. 

The official reinstatement letter indicated that Social Security would call again, although no date or time as to when was given.  I decided I’d better keep my in-person appointment, rather than waiting around for an appointment letter, to finally iron out this update of information issue, once and for all. Just as well, I never received one.

We arrived on time for the appointment, my son and I, and waited a half hour beyond our appointment time before being seen.  I don’t know if you have ever waited in a crowded waiting room with a 250-pound young man with autism and intellectual disabilities, but I must say that waiting is not my son’s forte.  

The result of the appointment was that everything was fine except that we needed to change the bank account we were using.  This bank account had been approved by previous reps, who had told me it was fine, but that was beside the point.  With the mission of getting a new bank account as soon as possible, we left. 

That same day, the rep processed the paperwork to stop my son’s payments again, as of June.  It was after all, Friday the Thirteenth.

As you may know, one does not just walk into a bank and instantly receive service these days.  I had to make an appointment.  I learned in our appointment last week with the bank rep, at which we had to sit for a half hour, waiting, in a far too quiet public room (again, with a 250-pound young man with autism whose forte is not waiting.) Without even ushering us into her office, the rep informed me that in order to open a bank account jointly with me, he needs to have a picture ID. My son does not drive so this has never been a huge issue before. But now it is.

Currently, I am awaiting an appointment with the DMV. It will be a few weeks out, no doubt, and we will be required to wait in a room, again. You can imagine how much I look forward to waiting in that room.

Weeks later, we are still without an appropriate bank account, an ID, or Social Security or Medicaid benefits.  ASAP, indeed!

What a precarious system!

And to throw a wrench (or spanner, as they say in England) into the works, this Big Beautiful Bill would lay another complication at our feet.  It is already a byzantine process, to obtain and maintain access to the very necessary and often life-saving services of Medicaid, as well as Social Security. Fortunately, in our case, my son is healthy, though he needs his meds, and we have private insurance which covers him.  For now. 

But soon he will age out. 

How will that work?  With almost monthly interruptions to his Medicaid coverage?  What if he is in an accident and Medicaid is his only way to be covered?  Do we, as his almost-ready-to-retire parents, have to worry about footing that (uncovered?) bill, too?

Cruel by Design

All this hullabaloo out of nowhere, after four years with not a peep from Social Security or Medicaid!  That this has nothing to do with the recent gutting of Social Security by DOGE is hard for me to believe.  Like this administration, the entire system is Cruel by Design.

Fortunately, I am a lawyer by training.  I have the patience and paperwork- and online-skills necessary to put this ship right.  We are not impoverished   as a family and we can get by and support our adult son, if need be, for the time being. 

What about those who don’t have those skills, don’t have access to that kind of support?  Does the government just allow their accounts to lapse indefinitely? 

The expression comes to mind, there, but for the grace of God, go I.

On the news shows and Substacks I frequent, I have often heard the phrase “Cruel by Design,” describing the current administration and its policies.  “Alligator Alcatraz,” a tent internment camp for migrants captured by ICE, opened vindictively in the Florida Everglades, in my home state, in the blazing July heat. I have heard it referred to as “Alligator Auschwitz” by some, for its shameless resemblance to a concentration camp. The President seemed gleeful to recount how the prisoners will be surrounded by alligators, boa constrictors and mosquitoes. He gestured with his hands to show how you can’t run in a straight line and escape an alligator. He seemed to relish the idea, that some wouldn’t.

Thinking of the many crime shows I have watched (as if immigration could be labeled a crime in any humane world) I imagine the prisoners, having their shoelaces removed from their steel-toed construction boots, being provided more benign footwear, more Floridian footwear, such as flip-flops. Cruel by Design. Alligator Alcatraz is only the latest iteration of this concept.

There but for the grace of God go I, we think, as immigrants are tossed into vans by masked men, off to be warehoused in this or an equally repugnant destination.  We thank God that we are not so treated.  But do we come to the rescue of those who are?  No.

It is similar with those who have disabilities, facing a spiderweb of intricate policies, designed to trip them up and thereby save their state or government a few pennies per month.  Where is the agency that ushers these deserving recipients through the process smoothly, and comes to their aid when they trip up?  I am not aware that there is any such failsafe device. It is proof of our inhumanity that there is none.

The heartless message seems to be, to pull yourself up, by your own bootstraps.

Even if they have taken away your boots.