I was disgusted and I was begging. The judge said something, then later someone else said something that aligned, and the lightbulb went off in my head. If you have ever said, “why does helping my 18+ special needs child have to be so hard?”, please consider sharing your experience and wisdom to improve the current plight. Share your good ideas. Here’s the back story.
Remember how you dread checking the mail? All those the denial letters from HHSC or SSA on your kid. Letters asking for more info. A thick pile of empty pages to be filed out with repetitive info, stuff you have already submitted before. And was denied before. A long, sad waste of trees.
Same here. Three more envelopes into two piles, the day’s mail from Texas Health and Human Services Commission (HHSC). We have been up to three Fraud/Fair Hearings Appeals/Denials, all denied but I didn’t know why.
Let’s pause a moment while I share a growing, grass-roots, parent group gathering personal stories of wisdom and experience: Your Life Journey Advocacy. Facebook. Website. We are gathering volunteer family stories of how government can save time, trees and churning. Ways to reduce costs and waste. Will you share your story, your proposed improvements, please?
As an example, instead of 109 different Medicaid programs to “test for” (with untold interpretations a greenhorn employee could misinterpret or lie about), generalize that down to 15, let’s say. Make a one-page chart simplifying qualifiers, ages, relevant factors, a simplified roadmap that a new employee or family could navigate and understand.
Back to my son’s mess, the back-story. Over the last year or so, I have lost track of how many (I could make a very good estimate, if you really wanted to know) phone calls, letters, emails and f2f conversations I have had with both subject-matter experts and those oh-so-not. I appreciate the experts hugely, and have sent emails attempting to connect them to each other. I found this useful HHSC Fair/Fraud Appeals email: AppealsInfoArea2@HHSC.State.TX.us which takes you to an attentive legal side team of HHSC but not connected to the main organization.
You may have heard Texas Health and Human Services Commision (HHSC) “tests” our applications for whichever of the 109 Medicaid programs is indicated. You have 1 in 109 chances of being in the right bucket. That’s less than 1 chance in 100, less than 1% chance of being in the right program.
Then there’s Social Security Administration. As John turned 18, the two agencies went their separate ways. They seem to coordinate with each other much better before the child turns 18 (“Transition”). Their two databases (HHSC’s and SSA’s) can see each other, just in case someone tells you the opposite. Personally, we have a Lost-in-Space DAC application with SSA. I call Disability Determinations every three months or so, with zero luck thus far on where John’s case is and if it’s been assigned. SSA to us is a black hole.
In my frustration, using the advice from many kind helpers, I am copying ever-more experts with each round of HHSC denial. 109 Medicaid programs in Texas, and you are also fighting system quandaries. (I do admit to always kind to the other person on the phone, and I tell them I worry about their Moral Injury. It is always surprising how human they become when I lay down my sword.)
So, we know how to get a Fair/Fraud Hearing triggered: Express dissatisfaction with the outcome or say “appeal”. I have unwittingly triggered three of these.
Eventually, with the help of Allison Schaberg of Consolidated Planning, we discovered the reason HHSC was denying John’s various applications. “TxHmL doesn’t allow the special waiver income limit”. Here is what MEPD said. “Texas Home Living is unique among the Waiver programs because it is the only one which requires the person to be eligible for Medicaid under another full Medicaid program such as SSI, Disabled Adult Child, Pickle, MBIC, etc. to receive services. A person cannot be found eligible for Texas Home Living under the special income limit. In this case, this person was receiving Texas Home Living services under his eligibility for the Children’s Medicaid (CMA) program. When he lost eligibility for CMA, he also lost eligibility for Texas Home Living. To continue receiving services, he would need to either be found eligible for another full Medicaid program or apply for another Waiver program that does use the special income limit.” What that means is when John turned 18, the Survivorship he had been receiving because his dad died now caused him to lose his Medicaid, his case manager at the LIDDA, and his place in the Waiver line receiving services. It took far too much detective work to finally learn why.
So, we wait for the next outcome/denial, which will most likely be the open DAC application to SSA that exists somewhere but no one knows where. Also, it sounds like he will need to wait for his HCS slot, theoretically when he will get the special income limit. Lots of red herrings we don’t know: “Is he working? If so, he could do Medicaid Buy In. There may be some work incentives, which obviously would only apply if he is working and has earned income. There is info about the work incentives that apply to Medicaid. These don’t always apply as some programs do not allow any income to be disallowed, such as the waiver special income limit. It is gross income, counting all income, no exclusions. I have asked my MEPD person exactly which programs the IRWEs apply to.” We are still waiting for that answer, as well as several supervisors who promised to call back.
Time again for the phone call to Andrew, Social Security Administration SSA Disability Determinations, 800-252-7009, who told me John’s SSA DAC application is “definitely in the queue”, is unassigned as of yet. I asked oh-so-nicely to be escalated to a supervisor, he will, he promised, and I should hear back in 3-4 days by phone, which never happened. Each time I talk with SSA, if they answer their phone, it’s a pleasant conversation, but I still hate getting lied to. Still, I make a special effort always tell them “thanks for answering your phone.” Someone told me to set up my son’s SSA account through Login.gov. I did. There is no information in that online SSA acct.
To complicate our case, John has been receiving SSA Survivorship since his father died. Also, John worked TWC’s Summer Earn and Learn program, SEAL, for five weeks. Small paychecks, he is happy there and wants to work. John is 18, so he also has several years left of our ISD’s Adult Transition called TRAILS, very good for his developmental delay. They push on independence and part-time work placement with borrowed jobs. We shall also pursue volunteering. I have confirmed John is still on the HCS waiver list. There are a lot of programs John won’t qualify for, which we are learning the hard way, one-by-one. Hopefully our churning can benefit others going forward, but I have to talk about it, like here. If I just suffer and keep my mouth shut, how do I help you? I did cancel the remaining two HHSC auto-generated Fair/Fraud Hearings, as I have learned it will just be a waste of people’s time.
Out of the blue, I got a phone call on 06.17.25, 9:30am, for 25 minutes, with the kind and informative Ms. Brittney, one escalation from the AppealsInfoArea2@HHSC.State.TX.us team, regarding my email of 06.16.2025. To find her department again, I email the AppealsArea2 team, they will send it on. She’s almost on maternity leave, so no phone number or last name. Very helpful professional. I get some clarity on what isn’t working. It doesn’t bring clarity on what will work, but instead just why the (pointless) denials are coming in the mail. She told me (long story short) that I needed to call HHSC’s PSU Public Service Unit, 1-877-438-5658 and apply for John for Waiver Medicaid, probably Star Plus, which I will do if SSA denies endlessly his DAC application. Why do you care about this endless detail? John’s not been “tested” for any of the right programs since he turned 18. Turning 18 has turned our years of careful preparation on its ear, so be aware?
Ms. Brittney talked about SSDI or RSDI (“RSDI stands for Retirement, Survivors, and Disability Insurance. It’s a program administered by the Social Security Administration (SSA) that provides monthly income to eligible individuals based on their work history and contributions to the Social Security system. RSDI encompasses three main types of benefits: retirement benefits for those who have reached retirement age, survivor benefits for eligible family members of deceased workers, and disability benefits for individuals unable to work due to a disability for him in the future.”) She told me there is no record of John’s SSA DAC application in what she can see of the SSA database. Zero record. (SSA Disabilities Determination does say it exists, they just don’t know where.) She said that HHSC also has a DAC process, but they won’t veto SSA’s vote. We may have to appeal to SSA if they deny DAC. Possibly we can apply to HHSA DAC, but again, they won’t override SSA. She also said we may need to submit an SSI application to SSA(“SSI is for people who are 65 or older, as well as people of any age, including children, who are blind or have disabilities.” She was the one who told me the reason I keep getting Fair/Fraud hearings is the key word “appeal” or great dissatisfaction auto triggers an Appeal. So, a few new clues. Bottom line: Zero accomplished thus far, all that work, time, paper, cost.
Going backward in time, when John turned 18 and our carefully crafted plan fell apart, we initially applied via our LIDDA with their “golden ticket”. We confirmed via HHSC Omsbudsman’s office they did receive the 1,491 pages Ms. Linda faxed in but that never got connected to John’s Medicaid HHSC case. So, 1,491 faxed pages just floating through the computer system. Then, soon, I got three more fat envelopes from you-know-who. Our LIDDA Coordinator has spent days on our reinstatement paperwork. She’s a champ. One of these envelopes wanted my signature on 20 pages of application. Envelopes Two and Three demanded all support re-requested (like they didn’t trust the 20 pages and all the documentation the LIDDA Coordinator had already submitted on John’s behalf) AND they wanted all the pages back by November 21 and 24 respectively. Those deadlines are calendar-impossible. One was as if I was applying, wanting my “self employment receipts”, etc., etc., making zero sense, which I wrote that back to them on their letter in ink. The whole point is John is 18, his own person applying. Mom only wants re-establishment of Rep Payee, based on the FSIQ (Full Scale IQ) and DAC (Disabled Adult Child) application. Such government duplication and stated threats we would lose it / be denied again if I fail to comply timely. Timely was already impossible. Sometimes I respond back via mail, writing on their letters and returning them in their self-addressed envelopes. (Anything to save a little tree.)
Another long phone call this day with HHSC trying to fit the pieces together. They didn’t fit. First call was with Jose @211, then transferred to MEPD and MSP (all very sad acrynoms) with Ms. Claudia. (Still twisting around trying to settle too many applications with no case numbers, that LIDDA two-day fax of five required docs, and two case numbers for John.) Ms. Claudia (HHSC) tells me to write a statement with all the blah blah blah, mail it to them. I get home, feeling really beat-up. My phone rings, Caller ID says “HHSC” so I grab the call. It’s my hero Ms. Ulma/Ular, and she asks me who is messing with her case, that she’s been watching John’s case (like “dibs”?), and I give her the short version. I asked if any of that makes any sense on her side of the table. She laughs and says “yes”. “I am so glad I am not nuts” comes out of my mouth. We proceed to have the kindest, funniest, human-est conversation my heart could ever have imagined. I will do what I am told to do. Please don’t give up hope for your case(s). I hope not to have to involve the Omsbudsman but that is stupid. I have learned to go straight to HHSC Omsbudsman or the HHSC IDD Omsbudsman.
For all the parents fighting medical insurance wars, my blood went cold thinking what if John only had Medicaid (which he still doesn’t have), didn’t have the Aetna COBRA policy he’s paying for from his dad, during our very recent ER surgery on Testicular Torsion in Washington DC in Thanksgiving, 2024. They might have denied emergency surgery? I would be washing dishes for 30 years?
One of the tasks I dread and thus procrastinate on is calling Social Security Administration and Texas Health and Human Services Commission. Can you blame me? I have PTSD shock. My son has 2 cases in limbo, one with each agency now that he is 18 and stuff unbundles when the child turns 18. Before I start writing senators, Tracy with Maximum Health Network told me yesterday at Behavioral Health & Suicide Prevention Task Force: Montgomery County to go into the local offices. Just go in. Big words. In the past, it was a 3-part farce with SSA, but, hey, I called them today, on Good Friday and they were open. Both local agency offices answered the phone, I got the next step with SSA rolling (SSA-1372-BK only lasts 1 year once!!) and Tuesday will show up at the local HHSC at 7:30am and get in line. (HHSC doesn’t make appointments or give get-in-line numbers; the office is busiest at lunch). Nicest guy on the SSA phone, I told him thank you for answering, for helping us with the next things, especially in this hard time. He said they take pride in helping our families. I almost cried. Asked him to tell my other contact there hello for me. He said he would, using her name and my name. So, dear parents, stay proactive, kindly feisty and surely appreciative. Take good notes, don’t delay. I just dialed the number, didn’t over-think it. However, I have been lied to, ignored and returned day after day by “just going in”. What someone tells me on the phone doesn’t match what I am told after standing in line with my little number.
Buoyed up with false hope, I paid a physical visit to our local HHSC office in Conroe,Texas. Got there bright and shiny at 8am, stayed until 11am. I was first in line to check in. A nice mom of five of her own children, the intake CSR, told me wrongly I had to reapply. I eventually got myself to Morgan in Escalation, who told me never to reapply, but instead appeal. No supervisor was in the office. Morgan sent a message to the female who did answer an initial question for her on our behalf via Zoom and apparently became unavailable after that. As our discussion ensued, I asked Morgan to summarize/recap in John’sprofile. I would love to be wrong in believing she didn’t. She said his open case had been terminated/denied. No notice was sent to me as had always been the procedure, “too bad” she said if the Postal Service didn’t deliver it. We talked in circles on the factors she cited, all of which I would label excuses. She did want to win, although she did initially admit what HHSC did test for made no sense. She also went on to say John’s case had been closed because no trust documents had been returned, and that he was ineligible until he was 21 due to Survivorship income. We had a big circle conversation/argument about the timing of the trust docs having been uploaded into their database as a 2-part file uploaded by our LIDDAas outlined in my 11.22.24 letter. (Have I put you to sleep yet?) I confirmed with both Morgan and the intake CSR that all my summary letters were in their database. As well as having already been uploaded, I also offered physical copies of the trusts I had on me, but Morgan said she had already sent the case on, there was no way to contact that person but she would eventually call me. (She never did.) Why do they lie so much? There was no believable explanation as to why John had been denied and had also failed to notify me. In hindsight now, I got the why but dang, it took a long time to get a straight answer. We discussed past confusions of processing John’s case, including wrongly thinking I was wanting benefits for myself and CHIP for John. The STEP DOWN incident is also now moot, and I had fully reported on that, letter in their files. (I have learned to be anal in my documentation.)
In summary: It took way too long to learn why John’s relationship with our LIDDA ended. Our LIDDA didn’t know and they have really helped with the dirty work. (As I said previously, I have confirmed John is still on the HCS interest list. He was on the Texas Home Living list, receiving services, with a Medicaid case, when HHSC dropped him due to Survivorship exceeding income levels in Texas Home Living for those 18+.
SSA in Conroe twice has told me there is no way to check on his case once it goes to the Austin black hole. However, Allison Schaberg had given me the phone number for checking with Social Security Administration Determination Services. I called and got some clarity on its existance but not location.
Then there was the phone call from “Ruby in El Paso Texas Health and Human Services Commission at (915) 759-7667” but no extention shared and who wasn’t in that office when I called. No one knew her, nor that she was really “Rubie in Houston at Texas Health and Human Services”. I had called again Margaret at their Omsbudsman office a week previous, left all the details. No response. I did receive in yesterday’s mail 85 blank pages of #HHSC forms they already have in their database: 1,491 pages of uploaded faxes (all dated 11/6/2024 through 11/12/2024, all sent by our LIDDA, Tri County Behavioral Health Care) and never connected to his two case numbers (I have mentioned this previously). I have also interacted with Supervisor Maggie Stewart. My original Fraud hearing paperwork from Ms. Ivonne Desiga, Hearings Officer, cited Ms. Robin, Assistant, at 737-867-7384 and Ms. Desiga’s supervisor, Ms. Sandra Pinales at the same phone number. The conference call Fraud phone hearing told me to call 1-888-702-5981, Code 16091266898 at 8am CST. It was a very sad hour.
I also had seven days of phone calls and attempted phone calls which I documented in summary letters, also based on 2 envelopes received Friday 05.16.2025 and a thick letter-sized envelope received Saturday 05.17.2025. Then came a phone message from “Ruby in El Paso Texas Health and Human Services Commission at (915) 759-7667” but no extention shared and who wasn’t in that office when I called and no one knew who she was. Turns out Ruby in El Paso is really Rubie in Houston, HHSC. I had called again Margaret at their Omsbudsman office a week ago, left all the details and have heard nothing since.
I get in yesterday’s (05.17.25) mail 85 pages of HHSC info they already have in their database, partly citing some of the 1,491 pages of uploaded faxes never connected to his 2 case numbers in spite of great help from Tri-County Behavioral Healthcare. I kept John home from school Tuesday for their 8am Fraud hearing, they told me “no, we don’t need him” and mail me “yes, we do want him”.
What are families to do? So here’s the answer from our fun-filled one-hour with Texas Health and Human Services Commission and the Fraud Hearing Officer, (John and I on speaker-phone 8a this morning, John was excellent I will add) “denied”, of course, denied based on so many red herrings and irrelevant issues, with submitted “evidence” on only a tiny amount of the issue, I respectfully asked both Mr. Daniel Holcomb, Medicaid Eligibility Texas Health and Human Services Commission Appeals and Litigation and Fraud Hearing Officer Ivonne Sesiga “What is a family to do next?” I had also respectfully said twice how maddening it must be to work there, their only comments were, “go talk to your legislatures and to community groups”. It was all I could do to keep a straight voice for my inside laughing. Daniel Holcomb (HHSC for MEPD, and only MEPD) went on about regulations that we all know change when the child turns 18. All the rules, data bases, prior findings, blah blah blah. They said that all they know is their little silo, they offered zero suggestions. I will get a hearing email, which I will appeal back in writing. I will go back to the Omsbudsman and IDD Omsbudsman offices, copy the LIDDA and Steve Toth and Brandon Creighton staffers, add another layer up and go on living each day. John was out the door like a flash, goosing me to get him to school.
Then I had the greatest phone call of the decade with Ms. Lynn Humphrey, Texas Health and Human Services Commission, 903-677-9206 office number. She’s got 20 years with them, an old-school Case Worker who really cares, who can remember pre-#McDonaldization of the agency. She’s of the customer mindset, happy for you to have her number for cases of #Elderly and #Disabled. The Omnsbudsman office sent her to me. I couldn’t believe it — a real number, she answered it, last name and everything. After we discussed what I should be doing for John, I begged her over and over to give our parent/community group guidance on what needs to be done to make this better. I nominate her to be on the Governors Board, et al, to help as a Subject Matter Expert with great heart, from the inside out. I got the skinny on a lot of processes, all to the purpose of our helping them get better.
We shall be assembling and collating family stories on #DevelopmentalDelay, #HHSC, #SSA, #Disabilities, #MentalHealth. We shall be collating ideas from the families and the community in a public forum.
We ask for yours, positive, action-forward-focused, for the website and YouTube Channel. Send me your link, if you prefer. Make sure it is action-oriented, well-thought-out, positive and forward-looking.
I was so broken hearted earlier today, having received 3 email versions of 2 Fraud Hearing Decisions, all blah blah blah. Today I have also reached out to media. No takers yet on that. I was on a phone call to legal, when Ms. Lynn called and gave clarity and experience to our mission. I took that a sign of direction. Please join us while issues are in churning, voting is in session, budgets are being formed and everything is up in the air, I would argue that this is the time to get Power’s attention. Listen to a few wise people who remember all the good processes, when people mattered, relationships mattered. I got her permission to tell you. Help us. Please don’t sit on your frustrations. That won’t change anything. Send us your stories of what we need to improve, and if you have ideas on specifics, even better. We will soon have a website up, a YouTube channel and a voice for action.
Ms. Lin Humphrey was sent to me on May 21 by the HHSC Omsbudsman Office, with 20 years of HHSC experience as a case worker who still really cares, who can remember pre-McDonaldization of the agency. She’s of the customer-care mindset, possessing great knowledge of HHSC rules. After we discussed what I should be doing for my son, I then begged her to give our parent/community group guidance on what needs to be done to make this quagmire more efficient, much as I had begged the acting judge during our Fraud hearing. She had many pro-active ideas of process improvements, and she gave me great inspiration for our community-based, public story-gathering and advocacy to your offices. As you know, we are all parents with much skin in this game. We have zero luxury to be non-nonchalant or careless in our stewardship. Ms. Lin Humphrey is recognized state-wide as an exceptional Subject Matter Expert (SME) with great heart, to help lead the improvements to the system from the inside out. She helped my heart and spirit heal instantly after our Fraud hearing (nothing personal) that was utterly lacking anything of reality in the lives of our families struggling with HHSC nonsense. Thus, our growing group of parents and community members shall assemble and collate family stories on Developmental Delay, HHSC, SSA, Disabilities, Mental Health in a public forum. While issues are in churning, voting is in session, budgets are being formed and everything is up in the air, our citizen coalition believes this is the time to begin and never stop get Power’s attention. I specifically got Ms. Lin’s permission to tell you.
- We shall not sit on our frustrations. That won’t change anything.
- We shall be publishing family histories / stories with specific ideas and future strategies for the very wide variation of co-concurring issues in (but not limited to) Developmental Delay, Disabilities and Mental Health.
- We have exciting plans for your suggestions. Thank you. We will be keeping you all alerted, as well as all our community boards, support groups, collaborations, friends and families who help each other. Grass roots to the max, using the growing array of tools available to get out the word.
“Talk to your legislators” is what I got when I begged both the Fraud Hearing Officer and HHSC Supervisor (both present on the phone call) “what do families do next?” The angels have a wicked sense of humor, for our NAMI of Greater Houston team had just spent the day in Austin talking to legislators.
On May 23, 2025, I received a phone call from Ms. Smith of HHSC Resource Unit via HHSC Omsbudsman Office’s Ms. Margaret Lopez (see previous notes) request to check back with me. Ms. Smith put this following information both in John’s original Case #102…. (cited in the November appeal and appeal denial) and also current Case #105…. (perhaps showing “closed”). We discussed past history of applications, denials and appeals, RSI (Survivorship) and other programs based on income and home/family size. Ms. Smith was thorough, I told her I appreciated her knowledge, and on behalf of her interceeding because the Omsbudsman office sent her to me. There may be a day when he needs that option, and I can’t be cavalier on his behalf now.
I had a mouthful of food when the HHSC phone call came in. It was Margaret, HHSC Omsbudsman Office, (lucky me on the assignment rotation, she’s got a great heart) at 877.787.8999 (El Paso, I think). We have spoken before. She had seen the phone call report and was checking in. I told her she had the internal summary, my letter to them in the mail. Nice of her not to snort….. She got my long answer to her question, long, thorough, from-the-outside-in, well-coated in my appreciation of the quandaries. She patiently listened to my “this is just like an LEA ARD/IEP team” blah, blah, blah. We talked about policies, legislative skin-in-the-game (that’s when laws change), and how the Omsbudsman Office doesn’t mind playing internal bad cop for our families (my words). They consider it their job. John has some remaining denial-appealed, also-to-the-LIDDA issues, and other than those, we are waiting for Godot ….. er…… two agencies. She parted with this to me: “Fight the Good Fight” #YourLifeJourneyHHSC
Remember that lightbulb? My saying that the Fraud Hearing judge told me “talk to your legislators” when I begged her for “what are our families to do next?” That I talked to Lin Hamilton, HHSC 20-year case manager, got a lot of encouragement. I also talked to Margaret at HHSC Omsbudsman, she said to “fight the good fight”. So there are heroes from the inside out.
#YourLifeJourneyHHSC, #YourLifeJourneySSA, #YourLifeJourneyLEA shall start archiving positive, fact-filled, reform-oriented stories from the outside in.