A System Built to Fail: How Texas Turned Disability Care Into a Decades Long Waiting Game

View the Texas Watchdog article A System Built to Fail: How Texas Turned Disability Care Into a Decades Long Waiting Game here. 

The Texas Home and Community-based Services (HCS) program is supposed to be the gold standard in disability care, offering individuals with intellectual and developmental disabilities (IDD) a way to live independently in their communities while receiving critical services. But in Texas, as with so many well-meaning social programs, the reality is something much different. What should be a system of care and support has instead become a bureaucratic nightmare, bogged down by endless waitlists, underfunded agencies, and a Medicaid “unwinding” process that has pushed the system past the breaking point. More than 108,000 Texans are currently on the HCS waitlist as of 2024, with some families facing wait times of 15 years or longer. The program designed to help the state’s most vulnerable has become, in effect, a death sentence for thousands, who simply cannot afford to wait while the system works itself out.

Medicaid Unwinding: The Bureaucratic Disaster

Texas’s HCS crisis is bad enough, but the state’s Medicaid unwinding process has made everything much, much worse. The “unwinding” refers to the bureaucratic recalibration of Medicaid eligibility that followed the end of the COVID-19 pandemic’s continuous coverage policies. Since March 31, 2023, over 2 million Texans — the majority of them children — have lost Medicaid coverage. A staggering portion of these losses didn’t happen because people no longer qualified, but because of procedural errors — paperwork lost in the mail, families missing obscure deadlines, or other administrative failures. Texas’s procedural denial rate is currently at 35%, compared to the national average of 22%. Families aren’t losing coverage because they don’t need it; they’re losing it because the state can’t manage the paperwork.

For families caring for individuals with disabilities, the consequences of this bureaucratic mess are devastating. The loss of Medicaid coverage interrupts critical services — everything from behavioral therapy to dental care. Texas clinics that serve as the safety net for disabled individuals have been financially crippled by the loss of Medicaid revenue. Since the unwinding process began, many clinics have reported a 30% decrease in Medicaid revenue, forcing layoffs, furloughs, and cuts to essential services. The effects of these cuts ripple across the entire disability services network, further stretching an already overburdened system.

The Waitlist Crisis: A System at Breaking Point

The HCS waitlist crisis is not just a story of bureaucratic dysfunction; it’s a story of human suffering. For families stuck in waitlist purgatory, the wait for services can stretch 10, 12, even 15 years. By the time their loved one is finally eligible for services, the individual’s needs have often changed dramatically — if they haven’t died in the interim. This isn’t a small problem affecting a handful of people; as of early 2024, over 108,000 Texans are on the waitlist, making up nearly 30% of the national waiting list for Home and Community-Based Services.

The waitlist isn’t just a logistical challenge; it’s a reflection of a much deeper, more systemic failure. While Texas has continued to funnel money into its troubled State Supported Living Centers (SSLCs), it has woefully underfunded community-based care programs like HCS. SSLCs are not only more expensive — costing more than $210,000 per resident per year — but they’re also rife with abuse and neglect. But Texas has a perverse incentive to keep funding these institutions because the state receives higher federal reimbursement rates for institutional care than for community-based services.

In the meantime, individuals who could be living independently with proper support remain on the HCS waitlist, often forced into institutional care they don’t want and don’t need. It’s an outrageous, morally bankrupt system where people who could live fulfilling lives in their communities are instead warehoused in institutions because the state won’t fund their community-based care.

Crisis Diversion Slots: A False Safety Net

In an attempt to triage the worst cases on the HCS waitlist, Texas has created Crisis Diversion slots — a system designed to give immediate HCS access to individuals at imminent risk of institutionalization. The idea is that if you’re about to be forced into an institution because you can’t get the care you need, you can jump to the front of the line. In theory, it’s a great idea. In practice, it’s a Band-Aid on a bullet wound. The slots are extremely limited, subject to the state’s budget whims, and difficult to secure.

The process for obtaining a Crisis Diversion slot is as bureaucratic as you might expect. Families must navigate a mountain of paperwork and submit a formal request through the Local Intellectual and Developmental Disability Authority (LIDDA). This process includes filling out a Determination of Intellectual Disability (DID) form, providing extensive documentation, and crossing your fingers that HHSC will approve the request. Even if a family jumps through all these hoops, the availability of Crisis Diversion slots is always in question. Budget cuts and resource constraints mean that even in dire, life-threatening situations, families may still have to wait.

The Procedural Denial Trap: Bureaucracy Wins, Texans Lose

For the families stuck in the endless cycle of procedural denials, the Texas Medicaid system is a machine built to destroy hope. One-third of Medicaid denials in Texas are based on procedural issues rather than eligibility, and navigating the complex renewal process is a nightmare for families already stretched thin by the demands of caring for a disabled loved one. Lost paperwork, incorrect addresses, missed deadlines — these are the landmines that Texas families face. And the state is in no hurry to fix the problem. While other states have implemented ex parte renewals, which allow Medicaid eligibility to be determined based on existing data without requiring additional paperwork, Texas has been slow to adopt these common-sense reforms. Currently, only 6% of Medicaid renewals in Texas are processed through automated systems, compared to much higher rates in other states.

The result? Thousands of Texans — many of them children — are losing access to life-saving services because the system can’t keep track of its own paperwork. Families are left scrambling to reapply for services, a process that can take months, during which their loved ones go without the care they desperately need.

The Impact on Disability Services: A System on the Verge of Collapse

The Texas HCS system isn’t just failing the people on its waitlist; it’s failing the entire network of care providers who are supposed to deliver services. The Medicaid unwinding process has financially devastated many of the clinics and care centers that provide essential services for people with disabilities. A 30% drop in Medicaid revenue has forced clinics to lay off staff, furlough employees, and cut back on services like behavioral therapy, dental care, and other critical programs. The financial strain has hit safety net clinics the hardest — clinics that are often the last resort for families who can’t afford private care.

The Direct Service Workforce that supports HCS programs has been decimated by the state’s failure to provide adequate funding. Community attendants, personal care assistants, and other workers who provide hands-on care to individuals with disabilities are fleeing the field in droves because they’re overworked, underpaid, and unappreciated. The state has made some half-hearted attempts to address this crisis, but the efforts have been woefully inadequate. The Direct Service Workforce Development Taskforce, created to tackle recruitment and retention issues, has made little progress, and turnover rates remain sky-high. Texas’s refusal to pay these workers a living wage only exacerbates the problem, leaving families without the support they need and workers without the pay they deserve.

Federal Funding: The Money Is There, but Texas Won’t Take It

The federal government has thrown Texas more than a few lifelines to help address the HCS waitlist crisis, but the state has been slow — sometimes outright resistant — to grab them. In 2024, Texas received over $92 million in federal funding to help manage the Medicaid unwinding process, but those funds haven’t been enough to fix the systemic issues plaguing the program. Federal initiatives like ex parte renewals and the Money Follows the Person (MFP) demonstration, which helps transition individuals out of institutions and into community-based care, are grossly underutilized in Texas.

The state’s decision not to expand Medicaid under the Affordable Care Act has cost it billions of dollars in federal funding that could have been used to reduce the HCS waitlist and improve services for people with disabilities. Between 2014 and 2024, Texas taxpayers have effectively sent over $36 billion in federal taxes to other states to fund their Medicaid expansion programs. That’s money that could have gone toward reducing the waitlists for services like HCS and improving care for the state’s most vulnerable residents. But instead of taking the money, Texas has chosen to leave its residents in bureaucratic limbo.

Community-Based Care: The Solution That’s Right in Front of Us

The absurdity of the Texas HCS crisis is that the solution is right in front of us, but the state refuses to fully invest in it. Community-based care, provided through programs like HCS and the Community Living Assistance and Support Services (CLASS) waiver, is cheaper and more effective than institutional care. It allows individuals with disabilities to live independently while receiving the support they need, and it prevents the kind of abuse and neglect that are rampant in institutions like SSLCs.

But community-based care is only effective if people can access it. And right now, Texas isn’t funding these programs at the level necessary to meet demand. The state continues to pour money into expensive institutions while neglecting the community-based care programs that are cheaper, more humane, and more effective. It’s a strategy that defies logic but makes perfect sense when you consider that institutional care brings in more federal dollars under the current Medicaid reimbursement system.

The Way Forward: Reform or Collapse

The Texas HCS system is teetering on the brink of collapse, but it’s not beyond saving. Advocates have proposed a range of reforms that could help fix the system, including raising wages for community attendants, streamlining the application process, and increasing the use of automated eligibility checks to reduce the burden on families. Perhaps the most important reform would be expanding Medicaid under the ACA, which would bring billions of federal dollars into the state to help reduce the HCS waitlist and improve services for people with disabilities.

The Time to Care coalition has been leading the charge for these reforms, pushing the Texas Legislature to take action on long-standing issues like worker pay and service funding. But so far, the state’s response has been tepid at best. In 2021, lawmakers allocated $77 million to reduce the HCS waitlist, but that’s barely a drop in the bucket compared to what’s needed. The systemic issues plaguing the HCS system require a much more significant investment, both in terms of money and political will.

The Price of Indifference

At the heart of the Texas HCS crisis is a fundamental indifference to the lives of the state’s most vulnerable residents. Whether it’s the endless waitlists, the procedural denials, or the chronic underfunding of community-based care, the message from the state is clear: We don’t care enough to fix it. The people who need these services — the children, the adults with disabilities, the families caring for them — are left to fend for themselves in a system that seems designed to make them fail. Until Texas decides to invest in the people it claims to serve, the HCS waitlist will remain a cruel joke, a waiting room with no exit, where the most vulnerable Texans are left to suffer and wait while the state looks the other way.