Promised a Lifeline, Given a Nightmare: How Texas’s HCS Program Fails Families with Disabilities
The Texas Home and Community-Based Services (HCS) program has long been hailed as a lifeline for families dealing with intellectual and developmental disabilities (IDD). It’s supposed to offer care, services, and support that keep people with IDD out of institutions and allow them to live in their communities. In theory, it’s a beautiful concept. In practice, however, Texas’s HCS system has devolved into a sprawling, bureaucratic mess that leaves tens of thousands of people waiting — sometimes for over a decade — for services they desperately need. What was supposed to be a humane and responsive system has instead become a Kafkaesque nightmare, with families trapped on endless waitlists, drowning in paperwork, and watching as their loved ones languish without the help they need.
How Texas Became Ground Zero for a Healthcare Crisis
Texas is no stranger to healthcare crises. The state has consistently ranked near the bottom when it comes to access to healthcare, particularly for low-income individuals. It’s also one of only 12 states that have refused to expand Medicaid under the Affordable Care Act (ACA), a decision that has left hundreds of thousands of Texans without coverage. And then there’s the HCS waitlist — a symptom of a much larger, much deeper problem. As of 2024, more than 108,000 Texans were stuck on the HCS waitlist, with some families waiting 15 years or longer for services. Yes, you read that right: 15 years. That’s enough time for a child to go from kindergarten to high school graduation without ever receiving the help they need.
The Texas Tribune reported that many of these individuals have been trapped on the waitlist for so long that their needs have changed dramatically by the time their name is finally called. Some die before they ever receive services. Others are forced into institutional settings, exactly the kind of outcome the HCS program was designed to avoid. And yet, despite the growing demand for services, Texas’s Medicaid system remains woefully underfunded, understaffed, and overwhelmed.
The Perfect Storm: How Medicaid “Unwinding” Made Everything Worse
As if the HCS waitlist wasn’t already bad enough, the state’s bungled Medicaid “unwinding” process has made things even worse. After the federal government ended continuous Medicaid coverage in March 2023 — coverage that had been in place since the start of the COVID-19 pandemic — Texas rushed to redetermine eligibility for more than 5.9 million people. The result? Chaos. More than 2 million Texans lost their Medicaid coverage, many of them because of procedural denials rather than actual ineligibility. Translation: people were kicked off Medicaid because of paperwork errors, lost forms, or bureaucratic incompetence, not because they no longer met the eligibility requirements.
For individuals with disabilities who were relying on Medicaid to access HCS services, the unwinding process has been particularly brutal. Many have lost their coverage entirely, while others have seen their services disrupted by administrative delays. According to reports, Texas’s procedural denial rate is 35%, far higher than the national average of 22%. In other words, one-third of the people who lose Medicaid coverage in Texas are losing it because of paperwork issues. It’s a level of dysfunction that would be laughable if it weren’t so tragic.
A System Designed to Fail: The Bureaucratic Maze of HCS Enrollment
If you’ve ever tried to apply for Medicaid in Texas, you know it’s not exactly a user-friendly process. The system is complex, confusing, and riddled with bureaucratic hurdles that make it nearly impossible for families to navigate. The Texas Health and Human Services Commission (HHSC), which oversees the HCS program, relies heavily on manual processes for both application and renewal forms. Even when forms are submitted online, they often have to be re-entered manually by eligibility workers, adding unnecessary delays and increasing the likelihood of errors. As of early 2024, families were waiting an average of 88 days just for someone to start processing their Medicaid applications.
And then there are the procedural denials — those dreaded moments when you find out your application has been denied not because you’re ineligible, but because some bureaucrat lost your paperwork, or you missed a deadline you didn’t even know existed. Texas has become infamous for this. The state’s heavy reliance on paper-based processes, combined with its refusal to adopt modern data-driven approaches, means that only 6% of Medicaid renewals are processed through automated systems. In other states, that figure is much higher, which means fewer errors, fewer delays, and fewer people falling through the cracks. But in Texas, the cracks are more like gaping chasms, and they’re swallowing up the people who need help the most.
The Crisis Diversion Slots: A Band-Aid on a Bullet Wound
In an attempt to stem the tide of institutionalization, Texas has created Crisis Diversion slots within the HCS program. These slots are reserved for individuals who are at imminent risk of being institutionalized and allow them to jump ahead of the 108,000 others stuck on the waitlist. Sounds good in theory, right? The problem is, these slots are few and far between, and they’re subject to the whims of state budget allocations. Even in emergency situations, there’s no guarantee that a Crisis Diversion slot will be available. Families who are desperately trying to keep their loved ones out of institutions are often left waiting, even when they meet the qualifications for immediate help.
The process for securing a Crisis Diversion slot is, unsurprisingly, another bureaucratic maze. Families have to submit a Request for Home and Community-based Services Crisis Diversion Slot to HHSC, along with a mountain of supporting documentation, including the individual’s Determination of Intellectual Disability (DID) and Inventory for Client and Agency Planning (ICAP) booklet. HHSC staff then review the request and decide whether the individual qualifies for a slot. If they do, and if a slot is available, enrollment in the HCS program is authorized. But again, this is all contingent on there being enough slots to go around, which there rarely are.
The Impact on Disability Services: The Domino Effect of Medicaid Cuts
The Medicaid unwinding process hasn’t just affected the people who lost coverage — it’s also had a devastating impact on disability services across the state. Safety net clinics, which often serve as the primary care providers for individuals with disabilities, have reported a 30% decrease in Medicaid revenue since the unwinding began. This financial hit has forced some clinics to lay off staff, furlough employees, and cut back on essential services like behavioral health and dental care. For people with disabilities, many of whom rely on these clinics for their care, the loss of services has been catastrophic.
And then there’s the Texas foster care system, which is already under federal court supervision because of its many failures. The Medicaid unwinding process has only made things worse, especially for children with disabilities who are already struggling to get the care they need. Foster children with special needs are now facing additional barriers to accessing services, thanks to the state’s bungled Medicaid renewal process. In some cases, these children are losing coverage altogether, leaving them without the critical services they depend on.
The Staff Shortages: A Workforce in Crisis
It’s not just the people who need services who are suffering — the people who provide those services are in crisis too. The workforce that supports Texas’s disability services has been gutted by budget cuts, layoffs, and an inability to recruit and retain staff. The Direct Service Workforce Development Taskforce, which was supposed to address these issues, has made little headway in solving the problem. Community attendants and personal care assistants — the people who provide hands-on care to individuals with disabilities — are leaving the field in droves because they’re overworked, underpaid, and undervalued.
The result is a system that is teetering on the brink of collapse. Clinics and care facilities are struggling to keep up with demand, and the quality of care is deteriorating as staff are forced to take on more patients than they can handle. The people who rely on these services — people with disabilities, foster children, low-income families — are bearing the brunt of these failures, and there’s no end in sight.
Federal Funding: A Lifeline, or a Missed Opportunity?
The federal government has tried to throw Texas a lifeline, but the state has been slow to grab it. In 2024, Texas received over $92 million in federal funds to help manage the Medicaid unwinding process, but that money has done little to stem the tide of coverage losses and service disruptions. Federal initiatives like ex parte processing, which allows states to determine Medicaid eligibility using publicly available data, have been embraced by other states, but Texas has lagged behind. Only 6% of Medicaid renewals in Texas are processed through automated systems, compared to much higher rates in other states.
The federal government has also encouraged states to expand their Home and Community-Based Services (HCBS) programs, offering temporary increases in federal Medicaid matching funds to incentivize expansion. But Texas, predictably, has been slow to take advantage of these opportunities. The state’s refusal to expand Medicaid under the ACA has also cost it billions of dollars in federal funding, money that could have been used to reduce the HCS waitlist and improve services for people with disabilities.
Community-Based Care: The Solution That’s Right in Front of Us
The irony of the HCS crisis is that there’s a solution sitting right in front of us, but Texas refuses to fully embrace it. Community-based care, the very thing the HCS program was designed to provide, offers a more humane, cost-effective alternative to institutionalization. Programs like the Community Living Assistance and Support Services (CLASS) waiver and the Texas Home Living (TxHmL) program allow individuals with disabilities to live in their own homes or in small group settings, receiving the services they need to thrive. These programs are generally cheaper than institutional care and lead to better outcomes for individuals with disabilities.
But access to community-based care is limited by the same thing that plagues the HCS program: long waitlists, underfunding, and bureaucratic delays. Families who apply for CLASS or TxHmL often find themselves waiting years for services, just like those on the HCS waitlist. It’s a vicious cycle, and until Texas invests more in community-based care, it’s not going to get any better.
The Way Forward: Fixing a Broken System
It’s clear that the Texas HCS system is broken, but it’s not beyond repair. Advocates have called for a range of reforms that could help fix the system, including streamlining the application process, increasing the use of automated eligibility checks, and expanding Medicaid to increase funding for disability services. Raising wages for community attendants and personal care assistants would also help address the staffing shortages that are crippling the system.
Perhaps the most important reform, however, would be expanding access to community-based care. By investing more in programs like CLASS and TxHmL, Texas could reduce the waitlists for services and ensure that people with disabilities get the help they need without having to wait a decade or more. The money is there — the state just has to choose to spend it on the people who need it most.
A Crisis of Indifference
At the heart of the Texas HCS crisis is a simple, brutal fact: the state doesn’t care enough to fix it. Whether it’s the bureaucratic bungling of Medicaid renewals, the refusal to expand Medicaid under the ACA, or the failure to adequately fund community-based care, the result is the same: people with disabilities are being left behind. For the families stuck on the HCS waitlist, the message from the state is clear: wait your turn, even if that turn never comes. It’s a crisis born of indifference, and until Texas decides to care, nothing will change.
