Our (special needs) families sometime endure extra heartbreak, when we don’t expect more. It’s that “out-of-the-blue” part, the suddenness, that hurts most. Have you had a time when in spite of your best efforts, things fall harder, cut deeper into your soul?
Ponder when it is time to declare victory and depart the field. Yet at the same time, let us continue always to “Look for the Helpers” (Fred Rogers) and hold our peace.
Only God can make some things right. I am not allowed to judge … there’s a verse for that. And if I didn’t have faith, I do not know how I would cope. Over the years, I have ranted at God a few times since our diagnoses. Recently, it’s more a banter. I am guessing that’s a good thing.
I have shared freely and openly about our many interventions, our highs, our lows. My intention is to share so our kids can earn a better adult life. So, May you and your loved ones live well. May your pain heal, May your tears dry. May your spirit rise and laugh again. May you do your best and when that isn’t enough, May you walk away with your head up and your heart forward. May your scars help others. May you save your energy for those who matter.
During COVID-19, there was clemency toward Medicaid coverage for those with disabilities, including neurodiverse and developmentally-delayed children. Coverage was then dropped (I have heard 70%). We are one of those families. Are you?
He was dropped off the Texas Home Living interest list where he was receiving services, on it since age two. John had fallen from Medicaid grace because his dad died, Social Security was informed, Survivorship kicked in. Mom then appealed twice and was denied twice. It was the Survivorship funds that disqualified him from Medicaid and his LIDDA relationship. (He’s now back on that interest list, at about 115,873, starting over. )
He just turned 18, early childhood is over and the Transition Game is fully here. Last month, Thanksgiving 2024, we were out of state, with John suddenly requiring emergency surgery. Thankfully, he has an AETNA policy, a self-pay, COBRA-group conversion from his dad’s life. His only medical insurance.
Complicating things is the SSA (Social Security Admin.) and HHSD (Health and Human Services of Texas) don’t talk, don’t seem to have any coordination. This is not so good for families. Mom (with the OK from the LIDDA) chose to wait until his 18th birthday to re-try to help him re-file for the Texas Home Living Waiver interest list (he went from “got it” to 115,873) and Medicaid insurance coverage.
Each family’s version of transition can be a maddening process. Our personal efforts toward the SSA and the HHSC, with the help of the LIDDA have no result yet. I have been wary to call SSA and HHSC. That, of course, is counter-productive and won’t help my son. So I dial the numbers, prepared to patiently tell his story to each helper to whom I am passed. I take thorough notes with lots of details. After each phone call (never less than 1 hour in length each), I recap all the items in a punch-list letter back to them, keeping a copy myself. (I am glad to share any samples with you if you need.) (Also look into programs MEPD, MCPW, Long-term Disabled and MSP.) Be kind and patient, my advice. I have found it really pays dividends.
One of these things to get done is the FSIQ (Full Scale Intelligence Quotient), done by a doctor, physician and/or the LIDDA.
Another task in the timeline is the the executed SSA-1372-BK done by the school (Local Educational Authority, LEA) diagnostician declaring your child will continue in public school past their 18th birthday and then forwarded to the SSA by mail/fax. Tangled up in that is the application to the SSA to do an evaluation (ours was DAC). My experience is that is processed by phone. Don’t make my mistake of going in. Anyone who tells you to just go in is wasting your time. You will want a phone appointment with a disability specialist at your local SSA.
I suggest you ask for confirmation of instructions in writing. I had prepared a cover letter with John’s priorities, and did ask them to make a copy of my letter (punch list). She said he didn’t yet have a disability folder for uploads. Digital uploads were predicted, but we ended up with the LIDDA faxing a monster 2-part digital file attachment on a 20-page application. Also, the SSA told us we would need to sort out with the LIDDA issues with them, it was not the SSA’s problem.
Still in School? Our LEA adventure has been vigorous, and worth every bit of effort. John has fully used his LEA, and we have no regrets about big, bad public education and extra-curriculars in a big, bad high school. If you want to discuss the Parent Presentation, I am happy to share what I have created for John over his years. Consider it your marketing educational rebuttal plan, all in writing, over the years, into the federal document that is your child’s Deliberations.
Waiver Interest Lists: Hopefully, years ago, you called your county’s LIDDA to get on the appropriate waiver interest lists for your child’s future. Google that if you need to. Maybe you don’t eventually need or want it. (Hallelujah!) It may be one of the hardest phone calls you ever made. Don’t get emotional. Just do it. The sooner, the better. Search for your state, county, LIDDA and the waiver interest lists (Texas Home Living, HCS, CLASS). For example: CLASS has 3 parts: 1. Cognition-challenged. 2. Medically-challenged/fragile. 3. Vision/Hearing-challenged. You will reconfirm with them each 1 or 2 years. You may also find the listings online and/or on the app Your State Benefits (ours is Your Texas Benefits).
Another task of the Transition Game is the broad umbrella of Financial. Check also resources at https://www.consolidatedplanninggroup.com/…/allison… They offer a free initial consult. I then paid for further services. Lots of info on the Consolidated Planning YouTube Channel. Also, learn about Representative Payee. I have a bit of a head start, as I am his Rep Pay due to a divorce and a death.
Please use the experts at your LIDDA. My experiences with SSA and HHSC has always been best with courteous, unrushed phone calls. Their letters are hieroglyphics to me, so I ask a lot of questions. I have always found the helpers on the other end of the phone to be patient. I haven’t been burned yet.
All this is a drop in the bucket. There is still Housing, Legal, Social, Educational, etc. More interventions at this link. Take one step at a time. I can’t multi-task this stuff very well.
