The Gift of The Medicaid Waiver System
The year was 2018, and Aries had just completed his first pediatric appointment at the UT Physicians Pediatric Center’ Neonatal High Risk Clinic. Located within the boundaries of the Texas Medical Center, this clinic provides an all-inclusive and continuation of services to children who required care in a neonatal intensive care unit (NICU). The team of medical professionals specialized in providing families like ours with the necessary support needed after graduating from the NICU including general pediatric care and the complex medical issues that NICU alum may have.
I would also argue that it is a well-constructed community reintegration effort as well. After months and; for some families, years of being isolated from the rest of the world in a hospital, it truly takes the collective compassion of many individuals to help you overcome the trauma of the NICU and find yourself again in a “new normal.” What I believe was the most valuable asset about this space, was the wraparound support that was offered - particularly through the contributions of a social worker.
Our social worker, Anthony Farfan, truly set the bar of service at a level that very few others could reach. He was such an empathetic spirit and from what I could see, someone who genuinely wanted the best for families. The first time we ever met, he took the time to thoroughly educate me on the machine that was the Medicaid system and to really try to envision the broad spectrum of what the future could hold for a child and; later, adult like Aries. It would be through this conversation that he would provide me with the literature and applications for the Medicaid Waiver Interest programs. This one conversation, for which I would pay the hefty fine of “leave without pay” from work, would prove to be a blessing in the years ahead.
One of several awareness cards we published via social media. The more citizens are aware of these opportunities and their wait times, the better informed we can all be about policymaking and the support needs of the disabled community.
Texas Medicaid waivers are, as he would explain to me, are special programs which permit individuals who need nursing home level support have the opportunity to stay home with their families. This is achievable through the provision of services such as personal care, therapies, and home modifications, instead of institutional care. These programs covered disabilities such as intellectual, developmental disabilities, and medical fragility.
Anthony kept it very real with me in reminding me of my humanity – that my energy and love would bring Aries far, but that this was about sustaining it and setting him up for even greater success. But the years of waiting to make it into even one of these programs would take years to acquire. “Whatever you do,” he said. “Don’t give up. Call as much as you can, and ask what position he is.”
And from 2018 to present day, I followed his advice and routinely called the week before a major holiday. I would enroll Aries on the interest lists for:
Community Living Assistance and Support Services (CLASS),
Deaf Blind and Multiple Disabilities (DBMD),
Home and Community-based Services (HCS),
Medically Dependent Children’s Program (MDCP), and
Texas Home Living (TxHL).
Over the years, the rotation of call center agents would actually become pretty familiar with me and would become just as excited as I would be as I would learn about the his new position number from one season to the next. In 2022, he would move from a starting point of five thousand to being a qualifying participant in the Medically Dependent Children’s Program (MDCP). This opportunity would bring with it welcomed respite care and adaptive aid supports, as well as an annual re-authorization for Medicaid insurance. Via this program, we would be able to find and retain Aries’ caregiver, Ms. Bola, who has become a part of our family since she first started caring for Aries. And; though it took quite the lengthy legal battle on my part, we would also be able to secure partial funding for Aries’ Cubby Bed System via MDCP.
Aries at the age of six with his Cubby Bed Safety System. This was secured through partial funding via the adaptive aids allowance via the MDCP Medicaid Waiver as well as grant funding from the Be An Angel foundation. This unit has provided much ease at night thanks to the security features which include, but are not limited to camera monitoring and motion detection.
We would remain participants in this program until he would transition into qualifying participant status for the Deaf Blind and Multiple Disabilities (DBMD) in October of 2025 with an assessment of needs with a new consumer directed services (CDS) agency in December. The benefits of this program, which includes respite support and adaptive aid allowances also comes with the added benefit of care for an Intervenor to assist Aries with his mobility challenges throughout the day and Medicaid coverage without the pressures of reauthorization stipulations and age restrictions. Most importantly though, it provides Aries with a choice-filled future with supports for employment and residence life upon adulthood.
Please join me in congratulating Aries on becoming a DBMD Waiver Recipient after nearly eight years of being on the interest list!
As Anthony shared with me all of those years ago, one of the major benefits of these programs is about setting Aries up for the greatest chance at success in the long term. And as a mother, the very idea of workforce and residential support for my son brings a great sense of peace to my heart as we both continue to grow with time.
Opportunities to Share:
In addition to the incredible foundation of knowledge Anthony shared with me, I have been the beneficiary of investments in awareness from several other resources. If you are interested in learning more about the Medicaid Waiver System, I invite you to visit these websites:
Navigate Life Texas on Medicaid Waivers
This is just one page that is part of a very comprehensive website that covers so much more than Medicaid waiver programming. As Reigning Opportunities continues to grow, you will see me continue to recommend them as a resource.
Texas Parent to Parent on Services and Supports
This is just one page that is part of a very strong network of families who have achieved greatness through special needs parenting. This particular page, however, focuses on the services and supports for helping one’s child make a successful transition into adulthood.
As the adage often goes, “If you aren’t at the table, you’re on the menu.” Advocacy matters and visibility matters too. Protect Texas Fragile Kids is a network of parents who advocate and educate on the needs of disabled youth across the state. I leverage this to help me keep up with legislative impacts and so much more.
PTFK Warriors is a private Facebook group of parents and caregivers. I have appreciated this as a resource not only for connection, but for asking questions. By default, we become the experts on navigating the experience of raising medically fragile children.
