Transitioning: Be Prepared!

In our community, a teen transitioning has an entirely different connotations than it does for the rest of the world.

Transitioning in “Autism Speak” simply means a disabled child is becoming an adult, at least legally, aging out of some child services (like high school), but hopefully eligible for new ones or a job. These will, of course, vary by your child’s level of functioning and the services in his area. Post-transition, your child will be referred to as a “DAC.” A DAC is a “Disabled Adult Child.” Oh, so your child is a DAC? asked the person at THHS (aka, the Medicaid office). If you thought SSA was somewhat unpleasant, wait until THHS. If you must go there, try not to bring your DAC with you and do not go on a Monday.

By now, you all will have put your child’s name on the State’s waiting lists—no, interest lists, for there are no guarantees—for Texas Home Living (TxHmL) and Home and Community-Based Services (HCS), Medicaid-funded programs, since the line is about fourteen-plus years long. If you moved here from another State, as we did, you may find yourself in a service gap. . . . other states which turned down Medicaid expansion under Obama pretty much work the same way as Texas, with wait lists 14+ years long.

In the popular retirement state of Florida, for example, the situation has gotten so dire that the ARC of Florida has posted videos warning parents moving to the sunshine state to “Be Prepared!” Medicaid benefits for disabled adults do not transfer! Even though Medicaid is a federal program, the disability (Medicaid waiver) programs are administered by the individual states. If you move to Texas or Florida with a DAC, his name will be placed on the bottom of their “interest” lists for Medicaid-funded services, and thousands (22,000+) are already in line. I don’t mean to be grim, but it often happens that when parents pass on, their disabled adult child goes to live with relatives who may reside in another state. Having states each administer their own waiting lists for Medicaid-funded programs and services doesn’t seem like really a good plan for providing continuity of care for people with disabilities in this day and age, when people don’t live and die in place.

In Texas, the system of getting benefits is particularly confusing, IMHO, and not set up for the convenience of working parents, as I have discovered this year. Be prepared! It will require a lot of your sick and vacation days just to get signed up for services. Multiple trips to local Social Security Administration, MMHRA, and Health and Human Services, meetings with social workers and lawyers at your home, applying and reapplying, are not uncommon experiences for the parents of DACs. Some people I know have hired attorneys and advocates to try to get benefits for their kids.

What, you thought you could just walk into the Social Security Administration after your child turned 18, fill out a form and apply for disability benefits, just like that?

I did. I thought the system would be at least somewhat streamlined. Instead, I have come away with this feeling like I’m doing something no one else in the world has ever done before.

Seriously, we have jobs to go to and DACs to care for! I had to go back to “Waters Road” (SSA office) so many times it became a running joke in our house. “I’m going down to Waters Road! See you tonight!” I had a scheduled appointment with a claims agent handling my son’s case to deliver proof of disability for his claim (your child is not proof, don’t bring him down there, because the evaluators are in Austin), but when I showed up at the appointed time with the requested documents, the agent was “on vacation.” Another agent who barely made eye contact with me handled it; but I had brought too many documents with me, and his scanner was painfully slow (not a normal high-speed scanner like you find in modern offices) as he wasn’t the one who normally does this. He would only accept so many pages to be slid under the thin plexiglass barrier. “If they want more, they will let you know.” I had no idea there was going to be a page limit; I had to beg him to take more, once I realized he wasn’t going to scan in the whole stack. Also, I had imagined when the day came for my son to be enrolled we would be escorted into a private back office area and have some Styrofoam cup coffee hand-holding, not standing in front of a plexiglass window with my child’s whole life hanging in the balance. Don’t expect warm fuzzies at the SSA! And there will be people in the waiting area blaring their phones watching videos to pass the time. It is irritating. My advice? Eat a good breakfast before you go. Also, be forewarned: if your phone rings and you are on it talking for an instant, even to say, “I can’t talk now,” a burly police officer with a buzz-cut will come running over to tell you that you can’t be on your phone. Oh, and there is no free wi-fi at the SSA office, so don’t expect to use your time productively working. I give the experience one star.

I was just down there yesterday, in fact, on solar eclipse day, because now, approximately one year later, I received a letter in the mail saying that my son is no longer eligible for benefits “because he is turning 19,” even after he was determined by the SSA to be disabled for life; or so I had thought. This was not even the first time benefits had just arbitrarily stopped. The day of the eclipse was black-hole-sun day, when his benefits suddenly disappeared. I was there for many hours, no resolution. The claims officers were too busy, and Linda at Window 1, who would not reveal her last name to me, didn’t know what to tell me when my name was called. “The claims agents are too busy. Can you come back another day?” Other stuff happened in the days in between which I won’t go into for the sake of brevity. A week later, a new letter was mailed out, his benefits were on again! But I was also in the middle of applying for Medicaid, but they couldn’t move forward because of the benefits thing with SSA. It was a train wreck, really, and my son was derailed. I was down there at THHS that very morning. “We see in our system that his benefits are ending, so we cannot process his Medicaid application,” I was told.

“Why do we care even about Medicaid?” My husband asked as I was already months into the process. “We have Blue Cross Blue Shield, and no one takes Medicaid.” Talk about triggering! How could he not know how important this was after listening to me complain? Medicaid is the basis for ALL services for disabled people after the age of 18. Everything is Medicaid-dependent, including dayhabs and housing.

No Medicaid, no services. Our child might end up homeless and dying under an overpass.

Parents should not be put through so much grief.

I still haven’t been able to figure out how to get Medicaid for him with SSDI. The Harris Center is helping me to reapply because the form is designed for SSI. But this is unique to us (update as of 12/2024: We got Medicaid approved three months ago, but TxHmL is now off because, despite qualifying for Medicaid, they claim his SSDI benefit, only slightly higher than SSI, is too high to qualify for day hab services in Texas . . . I have a hearing coming up about that).

Here is my advice, not that I feel really in a position to give it at this point. . .

What follows are some things  you might want to do if your special child is approaching 18 in order to facilitate “transition.”

Start looking ahead of time for all new doctors, dentists, and psychiatrists. Pediatric doctors may no longer be able or willing to treat your 18 year-old DAC. Yes, as much as you want to, you cannot continue to take him the pediatrician’s office, with its wall murals and fish tanks and sponge bob bandaids. You cannot take him to pediatric dentists who give him plastic sunglasses to wear while having his teeth cleaned, and the ability to pick from a treasure chest once the ordeal is over. That’s all over now. He’s in a harsher, less friendly  adult world now. There are no stickers. With new patient appointment times taking months, you will want to make these in advance of his 18th birthday. Also, special needs dentists for adults are hard to find; some kids will need to be sedated if dental work needs to be done, but regular dental offices are not equipped, trained or staffed for that.

Get a State ID. New doctors will now ask to see your DAC’s photo ID when you show up for an appointment for the first time. You also must have this ID for travel with your child. The ID will also give police officers (should he come into contact with any) a heads up that your adult child is verbally impaired and may not respond to directions. Bring his State ID and guardianship docs whenever you go to doctors or travel with your adult child.

Get Guardianship. If you are in Harris County, be prepared to spend 5K and you will also need to pay for an ad litem attorney as well. Lawyers on both sides and someone from the court system will want to come to your house to meet you and your child during the work/school day (three visits to your house, plus one day for the hearing, which add up to 4 days off from work if you work far away). Start the process before 18. It will take a few months, being awarded after 18. If you are in Galveston county, I have heard that there is some way you can do guardianship for free through a program for GC residents.

Anyway, people will be coming into your home to meet you and your child, be prepared!

Go through the MHMRA intake process. You will have no choice in the matter, actually. If your child is approaching 18, it is time for all new psychological, IQ and behavioral assessments via the county. If your child is still 17, you will need to pay for these assessments and any other services through what they call a “MAP fee.” You must provide them with your tax returns and they will calculate your fees on a sliding scale. What, you thought Harris County would provide services to you for free?

After things are in motion with your local MRA, various case workers will want to come to your house during the work week to meet with you and your child to explain various programs and services your son qualifies for and have you sign a mountain of paperwork. If you live in Clear Lake and work (need the services to keep your job), everything they tell you about will be way too far away, in the middle of a work day, with a long waiting list. “Our program is located 40 miles away and is from 9-2 for two weeks out of the summer.” It’s just like that, at least so far. But we shall see now that he is going to be getting TxHmL, maybe, fingers crossed (They day his SSDI puts him over the limit?? What fresh Hell is this. . . ). The system is absolutely not designed for working parents, or to keep parents working, or it always assumed that a mom is available to drop off and pick up at hours which fall inside the span of a normal work day.

When you finally exit big waiting lists for services, you are ready to be placed onto myriad smaller wait lists for services. We were on the wait list to attend a special needs coffee shop in El Lago, which was the only thing we could get in our area through Harris County. Really? We’re going to be placed on a wait list to go to a coffee shop in El Lago? I had to work in the library that Friday night.

Maybe it was great, who knows.

Apply for SSI / SSDI. As mentioned above, this will likely require many calls and multiple trips down to the social security office. No one will ever answer the phone at the SSA, don’t bother calling. Eat breakfast and go. Never go on Monday unless you have the day off. Part of the problem in our case was that I was not clear on the SSI/ SSDI distinction, and so I applied for both at the encouragement of a well-meaning person at the Social Security office.

“I can’t tell you which one to apply for,” the man behind the plexiglass shield said, “so I recommend you apply for both.”

Almost every disabled adult child is drawing SSI benefits, not SSDI.

No one will likely even know about “SSDI.” SSDI is a mysterious thing.

Yes, the “D” does indeed stand for “disability,” so it doesn’t make sense that disabled people would not be on that one, right? I myself was totally confused, even though I am sure that over the years I have sat through countless webinars on the topic and even took copious notes at the time. When the moment came in the Social Security Office to pick one, when my son’s number came up, when I had to choose, I was like a deer in headlights. I remembered nothing of what I learned. I had no plan!

Which one do I apply for?

“We cannot tell you that. We are not allowed to.”

And I wasn’t sure if SSDI was not just some flavor of SSI, rather than its own program. Like, when someone says “SSI,” do they really mean it in a generic way, like SSI/SSDI both? Or are they literally just referring to SSI? You must be clear what you are going for, because these are two “different sides” of disability benefits, I was later told. The SSI side doesn’t speak much to the SSDI side, except to ensure your adult child is not double dipping, because you cannot draw both. One day, after months of back and forth, someone claims agent in the DC metro area with the appropriate level of clearance and knowledge of both programs asked me over the phone, “Why are you applying for SSI instead of SSDI? I cannot tell you which one to apply for,” he continued, “but if I were you, I would go with go with SSDI. In fact, I am going to cancel your son’s SSI claim right now so he can be considered for SSDI, for that will be better for him. You will get a notice in the mail that your son has been denied for his SSI claim, but ignore that. You will be approved for SSDI. Goodbye.”

SSDI is for disabled people with a work claim/record; SSI is for disabled people with no work record. That is the difference, as far as I can tell. Disabled kids who become adults tend to not have a work record nor retired parents. However, if one parent is already drawing social security benefits–one parent is old and/or disabled–the adult disabled child can claim on the parent’s work record, which is called “SSDI.” We opted for that since in our case it paid a little bit more than SSI.

But that created a Medicaid issue.

With SSDI instead of SSI, getting Medicaid is more difficult, or it has been for us. We are still in limbo. The whole system is designed for DACs to get SSI, period. It is an automatic thing with SSI. He has been denied Medicaid once. Why? “Not receiving SSI.” That was the box they checked to reject the application. SSDI doesn’t count?

I am trying again.

Open an ABLE Account. If you want to save SSI or SSDI for your child for the future, which the SSI pamphlet clearly states is a legitimate use of the funds, you cannot save it even in his Rep Payee account. Oh, you will need one of those, too. (I had an explanation of that here at one time, but deleted it . . . basically, you must go to the SSA and fill out forms and then they send you a letter you take to the bank.)  You must open an ABLE account to push the money into. Such is my understanding at least. I just want to note that Medicaid will still seize any money in the ABLE account for repayment of benefits once your child passes. The government allows your child to save to cover future expenses like clothes and shoes and haircuts without jeopardizing Medicaid, but all that remains will go to the government in the end.

Apply for Medicaid. When my child turned 18, we failed to apply for Medicaid. I was busy doing everything else, and I just didn’t think to rush out and apply for Medicaid because, well, we have employer-provided health insurance. I also thought there was a two year wait. But that was for Medicare, not Medicaid.

Recently, my son’s name came up on one of the Medicaid-waiver lists, the one called “Texas Home Living.” We have been on that interest list for about 14 years. When I called the number in the package to say, “Yes, we do want this,” my service coordinator said, “Oh no, mama! Why didn’t you apply for Medicaid right when he turned 18?”

Palm to the head. But actually, I think the Medicaid waiver means we do not need to be on Medicaid to qualify? Yes or no? The whole system is too confusing for lay people. We have just re-applied for Medicaid through the Harris Center. This is probably TMI, but if you are experiencing difficulties, know you are not the only one. I have a Master’s degree and it has been difficult even for me, so there.

Here is more advice when things go awry:

Contact the transition service coordinator at your child’s school, because the school district sometimes has inside contacts to the SSA and other agencies. This proved very helpful in my son’s case. He was able to facilitate a resolution for us.

Let your son’s case worker at the local MRA know of obstacles you are experiencing. They can help with the Medicaid application, which is 20 pages long and must be done just right.

Carry around notebook / journal with you where you write down names, numbers, phone calls, conversations. Always have your child’s social on hand. Do not expect anyone who works for the government to ever call you back, so this way you will not be disappointed.

Take time to view the webinars of the Consolidated Planning Group. They will explain the entire transitions process and will help you plan for your child’s future.

Good luck in your respective transition journeys!