“When we first went through this process, we were told we would be better off in Guam than in Texas.”
Several years had passed since Serena Ritch embarked on the arduous journey to secure state-funded services for her daughter, Sophie, who has an Intellectual & Development Disability (IDD). And while Serena’s words carried a touch of sarcasm, they were not entirely devoid of truth.
In Texas, there are nearly 160,000 people with IDD on the state’s waiting list for the home-and community-based services (HCS) waiver. This Medicaid waiver is highly sought after, because it provides essential services like respite care, physical therapy, and personal attendant support for individuals with IDD. It is also the only waiver that includes supported housing options, like group homes. The Case for Inclusion’s 2024 Report highlights the severity of the situation in Texas, stating “If you’re a person on a state’s waiting list for IDD services, there’s a better than 50-50 chance that you live in Texas; 63% of all who are waiting live in Texas.”
Serena experienced this firsthand. When Sophie was around a year old and missing important milestones, the decision was made to engage in sophisticated genetic testing. It was then they learned she had 22q11.2 – a genetic disease caused by a missing piece of DNA on the 22nd chromosome. Symptoms can include feeding difficulties, speech problems, developmental delays, behavioral challenges and psychiatric issues.
“It wasn’t immediately clear how significant her needs would be, but as time went on it became very apparent that she was going to need significant support,” Serena begins. “However, it wasn’t until she entered adolescence that things got really rough.”
Serena came to Metrocare when Sophie was around 10 years old and struggling with her mental health. Sophie was immediately placed on the (HCS) waiver list – with the understanding it could take up to 15 years to receive a spot in Texas.
“I discovered the hard way that there is a black hole in services for adults with IDD and psychiatric issues, because they don’t benefit from talk therapy, and applied behavior therapy for adults is few and far between,” Serena begins. “The critical thing for her was her medication. Metrocare was a critical part of the team I put together with UT Southwestern and doctors all over the world who specialize in her syndrome.”
Serena credits much of Sophie’s progress to her daughter’s own strength, the right medication, and, above all, time. Time spent advocating relentlessly for her, connecting with other families facing similar challenges, and, perhaps most agonizingly, waiting. Then, one day – 12 years after she had first been placed on the HCS waiting list – Serena received the long-awaited notice: Sophie had been approved. The raw emotion in Serena’s voice was still palpable as she recalled the moment.
“It was right around Easter when I got that news. I remember telling my family that we had received a miracle,” Serena says. “I feel like I’ve been pretty lucky in life, but I couldn’t afford to private pay the cost of a group home for the rest of her life. Getting that waiver, particularly for a single parent, was huge.”
The financial burden of long-term care is a challenge for the majority of families. Skilled nursing homes, which offer more intensive care, can be even more expensive. While assisted living or personal care facilities may be a more “affordable” option, the overall cost of long-term care remains overwhelming. Moreover, there is a direct care workforce crisis. Medicaid pays $10.60 per hour for staff who are asked to provide meals, supervision, prescription administration, transportation and grooming assistance. “I am fortunate that Sophie’s group home provider is a nonprofit and is able to fundraise the difference between what Medicaid pays and the actual cost of care. It is critically important that we all partner together and educate our legislators, so they consider raising the hourly rates.”
“The one thing I wish for all families going through this is advocacy. I think of families who don’t have support or who might speak English. Even as somebody with resources, having an additional advocate is critical,” Serena says. “That’s where Metrocare really stepped up. They advocated for Sophie, kept me updated on the waiver list, and helped us develop options to transition her to the next phase of living.”
Now, 30 years old, Sophie has been living at a group home facility for the past nine years. Residing only ten minutes away from her mom has given Serena peace of mind and has, most importantly, allowed Sophie to stay close to family, rooted in her community. Consistent care through group homes is essential for individuals with IDD, helping them avoid more costly and restrictive settings while simultaneously reducing the risk of unnecessary hospitalizations. Most importantly, it ensures that people like Sophie have ongoing support beyond their parents’ lifetimes, offering a future of stability and care.
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