16 Years and Counting: How One Family is Fighting Back Against Texas’s Broken Disability System
In Texas, everything is bigger — except, apparently, the state’s commitment to its most vulnerable citizens. For families like the Handleys, the road to receiving critical support services for their special-needs daughter has been a long and unforgiving journey through a bureaucratic maze that doesn’t just hinder progress — it erases hope.
Sixteen years after they first applied for Medicaid waiver services to help care for their daughter Caytlin, the Handleys are still waiting. Caytlin, now 30, was diagnosed with intellectual and developmental disabilities (IDD) in her early teens, and like many Texas families, the Handleys were unaware that they should have signed up for the state’s infamous Medicaid waiver interest lists at birth. Now, they find themselves advocating not just for their daughter, but for tens of thousands of other Texans trapped in a broken system.
In an industry often associated with unseen heroes — caregivers, support staff, community programs — the shadow cast by government neglect is inescapable. Across Texas, over 170,000 people are currently stuck on similar waiting lists for essential services, some of them facing delays of more than a decade. These are not luxury services, but necessary interventions, like home-based support, medical care, and therapies that allow people with disabilities to live fuller, more independent lives. As Caytlin Handley and her family’s story shows, this isn’t just an administrative oversight. It’s a systemic failure, one that speaks to how a state known for its big-hearted image is effectively betraying thousands of families in need.
Texas’s Service Desert: 170,000 People Waiting for Help
Let’s start with the numbers, because in a state as sprawling and self-assured as Texas, numbers matter. As of 2022, more than 170,000 people are stuck on Texas’s Medicaid waiver interest lists, waiting for services that range from home-based care and community living support to critical medical and therapeutic interventions. Some have been waiting as long as 15 years or more. The programs in question — like the Community Living Assistance and Support Services (CLASS) and Home and Community-Based Services (HCS) — are lifelines for families managing the complex realities of caring for individuals with severe disabilities.
The situation sounds dire because it is. Even in the best of circumstances, Texas families are left to navigate an incredibly complex system of bureaucratic red tape, with state officials offering little to no guidance on how to apply for services, or even what programs exist. The Handleys didn’t learn about the waiver interest lists until their daughter was 14 years old, at which point they were already more than a decade behind.
And here’s the kicker: signing up for the list doesn’t even guarantee you’ll get help. Eligibility isn’t determined until a spot opens up, which means that families often wait for years, unsure of whether they’ll ever get the services they need. For the Handleys and families like them, this uncertainty can turn into a cruel, never-ending game of “wait and see,” all while trying to manage the physical, emotional, and financial tolls of caregiving.
The Long Wait: Why Services Take So Long
At the heart of the problem is a familiar story of too little funding chasing too much need. Texas offers six Medicaid waiver programs aimed at helping individuals with disabilities, including CLASS, HCS, the Medically Dependent Children Program (MDCP), and STAR+PLUS Home and Community-Based Services (HCBS). These programs are intended to keep people with disabilities out of institutions and in their communities, where they can receive care that is often less expensive and more humane than institutional alternatives.
But there’s a catch: Texas doesn’t have nearly enough funding to cover the demand. As a result, the state uses a first-come, first-served system for its waiver programs, meaning that families are placed on interest lists and have to wait for years before receiving support. The average wait time? Over a decade. By the time most families reach the top of the list, their situation may have changed drastically — some individuals may have passed away or become too old to benefit from certain services. In short, the system is designed to fail those it claims to help.
Complicating matters is Texas’s approach to eligibility. Unlike other states, Texas doesn’t pre-qualify individuals before adding them to the interest lists. This means that thousands of people are added to the lists without knowing if they’ll actually qualify for the services they’re waiting for. In some cases, families wait years only to be told they don’t meet the eligibility criteria, leaving them back at square one.
Family Advocacy: The Handley’s Fight for Change
It’s this very broken system that led the Handley family to take matters into their own hands. After years of waiting in silence, they decided enough was enough. Along with advocating for their daughter Caytlin, who now works four jobs with the support of community businesses, the Handleys have become vocal advocates for legislative change.
Their proposed legislation, dubbed “the Handley Bill,” aims to close one of the most glaring gaps in Texas’s disability services system: the lack of information given to families at the time of diagnosis. The bill would require school districts to refer students with disabilities to their Local Intellectual and Developmental Disability Authority (LIDDA) immediately upon diagnosis, ensuring that families are informed about Medicaid waiver programs and other services from the start. It’s a simple, common-sense solution to a problem that has left countless families in the dark for years.
The Handley family’s journey is emblematic of a broader fight for equity and access in the disability services system. Their advocacy has taken them to the halls of the Texas legislature, where they’ve joined forces with other families and advocacy groups pushing for systemic reform. But even with widespread support from disability rights organizations and lawmakers, the road to change has been anything but smooth.
The Role of Local Authorities: Navigating the Bureaucracy
For families waiting for services, the Local Intellectual and Developmental Disability Authorities (LIDDAs) are often the first point of contact. These county-based agencies are responsible for managing interest lists for two of the state’s waiver programs — HCS and TxHmL — and for helping families navigate the complex web of available services.
But while LIDDAs are meant to provide guidance and support, they too are hamstrung by the broader inefficiencies of the system. One of the most frustrating realities for families is that even after years of waiting, reaching the top of an interest list doesn’t guarantee access to services. LIDDAs conduct biennial checks to confirm that families are still interested in services, but many families report that these contacts are sporadic at best, leading to even longer delays in accessing care.
Moreover, LIDDAs are often under-resourced and overburdened, making it difficult for them to keep up with the growing demand for services. With thousands of people waiting for waiver slots in every county, LIDDA staff are stretched thin, leaving families to fend for themselves in a confusing and opaque system.
The Impact on Caregivers: An Unseen Crisis
The human cost of these delays is immense, and nowhere is this more apparent than in the lives of the caregivers tasked with supporting individuals with disabilities. The stress of waiting for services can take a profound toll on families, particularly on those who have to balance caregiving responsibilities with work, financial stress, and their own health challenges.
Caregivers often report feeling isolated, overwhelmed, and burnt out. Without the support provided by Medicaid waiver programs, many families are forced to take on the role of full-time caregivers, a job that can be physically and emotionally exhausting. Studies show that caregivers of individuals with disabilities are at higher risk for health problems, including chronic pain, anxiety, and depression. The constant juggling act of providing care, managing medical needs, and navigating a convoluted service system can lead to a sense of hopelessness and despair.
For families like the Handleys, the wait for services isn’t just an inconvenience — it’s a daily struggle that affects every aspect of their lives. Without access to respite care, specialized therapies, or community support services, caregivers are left to shoulder the burden on their own, often at great personal cost.
Legislative Efforts: Incremental Progress and Ongoing Advocacy
Despite the long wait times and systemic inefficiencies, there have been some efforts to address the growing crisis. In recent years, advocacy groups like The Arc of Texas and the Coalition of Texans with Disabilities (CTD) have pushed for increased funding and legislative reforms aimed at reducing wait times and improving access to services.
One notable success came in the 2022–2023 biennium, when the Texas Legislature approved $76.9 million in additional funding to open more waiver slots. While this was a step in the right direction, it fell far short of meeting the needs of the 170,000 Texans still waiting for services. Moreover, the process of allocating new waiver slots remains slow and cumbersome, leaving many families skeptical of the state’s commitment to meaningful change.
Advocates argue that what’s needed isn’t just more funding, but a complete overhaul of the system. This includes streamlining the application process, pre-qualifying individuals before adding them to interest lists, and improving coordination between state agencies and local authorities. The Handley family and other advocates continue to push for these reforms, but progress has been incremental at best.
The State’s Response: Promises vs. Reality
For its part, the Texas government has acknowledged the severity of the problem, but its response has been slow and inadequate. In addition to the funding increase approved in the 2022–2023 biennium, the state has launched the Community First Choice (CFC) program, which provides home-based services without a waitlist. While CFC has offered some relief to families, it only covers basic attendant and habilitation services, leaving out many of the comprehensive supports provided by waiver programs.
The state’s emphasis on institutional care over community-based services has also drawn criticism. Despite widespread evidence that community-based services are more cost-effective and humane, Texas continues to allocate a significant portion of its budget to institutional care, which can be far more expensive and less beneficial for individuals with disabilities.
In the end, the state’s response has been characterized by a series of half-measures and incremental changes that have done little to alleviate the broader crisis. For families like the Handleys, the wait for real reform continues.
Moving Forward: The Fight for Systemic Change
The story of the Handleys is just one of thousands playing out across Texas. For every family waiting for services, the reality of the state’s broken system is a daily struggle filled with uncertainty, frustration, and heartbreak. But despite the challenges, families are continuing to fight for change.
Advocacy groups, legislators, and families are pushing for a more responsive and efficient system that can meet the growing demand for disability services. This includes not only increasing funding for waiver programs but also making systemic changes to ensure that families are informed about available services from the start, that eligibility determinations are made earlier in the process, and that the system is streamlined to reduce wait times.
The fight for change in Texas’s disability services system is far from over, but with families like the Handleys leading the charge, there is hope that the system can be reformed to better serve the state’s most vulnerable citizens. Until then, the wait for justice — and for services — continues.
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