The Medicaid Waiver Vindaloop

For about a year, I have been caught up in a weird situation with Medicaid for my child. We need Medicaid not for Medicaid per se, or to pay for health care, but for these things called Medicaid waivers. Having Medicaid, the right soft of Medicaid which can be billed for IDD Medicaid waivers, is needed for things like adult daycare and respite for those with severe intellectual disabilities and their families.

In Texas, Medicaid is administered by Texas Health and Human Services, but good luck speaking to anyone at HHS who really knows anything about Medicaid waiver programs for intellectually disabled adults, or has the power to do anything but transfer your call to someone else who might know more than they do. The people who administer the Medicaid waiver programs and the people who administer Medicaid are entirely separate, which makes it even harder to resolve problems.

Such has been our experience. Ideally, TxHmL allows adult kids with severe intellectual impairment to live at home with supports in their community. It pays for ISS/ dayhab for example. If one/one’s child is denied or mysteriously dropped from Medicaid and / or the Medicaid waiver program–say Texas Home Living–one receives letters saying so. If one disagrees with the decision, one is allowed to appeal the decision (s) by calling a number and scheduling an appeals hearing, which will be done by phone conference call many months down the road. In my case, I appealed the TxHmL denial, which was based on having the wrong kind of Medicaid, and then had to appeal Medicaid, which by then had been cancelled anyway for no known reason.

When you appeal, you must wait several weeks for a hearing scheduled at an appointed time. You will likely be assigned a hearing officer / judge who will speak in excruciating detail for 25 minutes about the procedural rules and administrative procedures of the hearing and allow you time to speak for only 5 minutes. Else, the person representing THHS’s cell phone will drop right after they speak and after that no one can speak or give testimony–the judge will not have it, so we had to remain silent on the line wasting time (thinking: I cannot believe I waited months and I took a day off from work for this . . . ). The judge will issue an opinion regardless, closing the case. You may appeal the actions of that judge through the same lengthy process.

Even though their judicial letterhead with say “Texas Health and Human Services,” that judge will likely know nothing about Medicaid qualifications or Medicaid waiver programs managed by Texas Health and Human Services to be able to adjudicate the case.

They will not be able to get straight what you are saying, since, astonishingly, they do not even know what a “Medicaid waiver” program is.

They will have never heard of “Texas Home Living,” so you must use your precious five minutes of permissible testimony time educating them about things you would really expect them to already know.

Furthermore, they will not have even bothered to look at your evidence, presented far in advance of the hearing, until your hearing time starts, also cutting into your time slot. This was the case with both of my judges.

“No offense, but why are you a Medicaid appeals judge if you do not know about Medicaid, Medicaid waivers or disability law?” I asked this to both of my judges at close. I still do not understand what kind of judge they are–administrative judges? What is that? Whoever heard of that?

They will say, in their defense, that they expect you to hire an attorney to explain the law to them.

They will also reveal, as if it is some sort of consolation to you, that they really have no actual power to order Texas Health and Human Services to do anything with regard to Medicaid anyway.

What is even the point of “appealing HHS’s decision” to deny Medicaid or a Medicaid waiver program–the appeals process is exactly the same–per the instructions stated in the denial letter (If you disagree with this decision of feel it has been made in error please call this number to schedule a hearing. . . ), programs which Harris county says, “Yes, yes, you are entitled to these by law!” if  judges cannot do anything to change the outcome of their decision?

So first we were assigned the “wrong kind” of Medicaid and then assigned the “wrong kind” of judge?

And then, even if you can pay for one, good luck finding a Medicaid attorney! Hah! “Lone Star Legal,” the free legal clinic THHS recommends in their denial letter, will take your information and they will have ten days to call you back. If they don’t, there is no penalty to them. No skin off their teeth! Don’t worry about missing their call, they will not. I am vigilant with my phone. I know who has called and who hasn’t.

You can try to call 211, which is just a call center for Medicaid. You will explain your situation, and they will transfer you. Then you wait on hold. You will explain, and they say they are transferring you to an escalation unit for disabled children and adults. Now we are really getting somewhere, you think to yourself. An “escalation unit.” After that, you will remain on hold for many hours listening to annoying flute music which stops occasionally, making you think someone is about to come on the line. The business day will end and no one will have come on the line. You will repeat this a few times and give up.

Your boss becomes angry with you because your personal life is interfering with your productivity. Obviously, you are in your office listening to flute music or talking to someone about Medicaid day after day. You will grow older and your hair will begin to fall out.

It has been one big aggravation ever since my son’s name came up on the Texas Home Living interest list a year ago.

We had been on that waiting list for 15 years. . . imagine, waiting 15 years to get services for a severely intellectually disabled child with an IQ of 40.

He completed a lengthy intake process and evaluation with Harris County, once right before he turned 18 and another right after. We met with the ISS provider in our house who did her own analysis / test and report. Then, after that, we could not get the program going because HHS was incapable of assigning the right kind of Medicaid billable for that program.

Our MHMRI (Harris Center) completed a referral sheet for Medicaid and the Medicaid Waiver so we could complete enrollment in TXHML. They–Harris County!!–applied for Medicaid twice for my son, explaining to us (and indicating this on their referral sheet) that my son qualified for TXHML.

Each time one files, Medicaid has 45 days to respond, but they are now taking up to 245 days–this was before Trump / Elon set out to make government more efficient by firing workers.

There is no penalty to HHS for their not responding within the designated 45 day timeframe. “It’s taking over 90,” said someone at 211. Then it was 245, according to a recent recorded message. My son was awarded Medicaid, briefly, but it was cancelled because they assigned him the “wrong kind” of Medicaid for TXHML. Why not just assign him the right kind?

The Harris Center showed up for my Medicaid hearings to advocate for my son. Texas Health and Human Services continued to turn us down for Medicaid. Harris County is saying yes, yes, the State is saying no, no.

I wrote to the Governor, to Ted Cruz, and just about everyone.

I don’t want to make this all about me or my situation, but let’s get real: a mentally disabled person cannot be left home alone all day during the work day.

I could probably be arrested for neglect if I did so and something happened to him.

The Texas Home Living program was supposed to provide care at least part of the time I was at work, delivered in one of their scarce ISS centers.

I literally took my current job BECAUSE it was located driving distance to the only ISS center in SE Houston and I knew my child only has one more year left in public school. I had two job offers back then, and I took this one because I could drop my son off at that center when I went to work. That was the plan.

The way the rules were written, as I just found out two days ago, one must have “SSI Medicaid,” and only “SSI Medicaid,” to qualify for the TXHML program. You will not be able to find that information published anywhere. While HCS is transparent, the qualifications for TXHML appear to be some deep dark secret. What I have been able to discern is that the SSA had to assign that type of Medicaid when they award SSI. SSI Medicaid is the ONLY permissible qualification for that program. Recipients of SSDI are just SOL.

This is just plain stupid to me. Because if a child is awarded SSDI when he turns 18, this means at least one of his parents is elderly, disabled and / or dead. While I don’t mean this to be a competition, but SSDI kids with decrepit, demented, diseased or dead parents need Medicaid as much or more than the SSI kids do, whose parents are younger and healthier.

Someone at HHS advised that I go back to the SSA and request “SSI Medicaid only”–not the check, just the Medicaid part, so my son could be enrolled in TXHML. I tried. The SSA said that they have never heard of such a thing as applying only for SSI Medicaid. There is no way to do this, apparently.

I just wanted to share my experiences with the world, as always, trying to make the world a better place.

Maybe HCS will be easier to qualify for when his name comes up on that Waiver list. We got signed up for another one also, called STAR Plus, with a long waiting list. How many are on that one ahead of him? “Thousands,” the voice on the phone responded.

“Wow. Like 999 bottles of beer on the wall, I guess he’ll get there eventually!”

Fingers crossed.