Texas HCS Waitlist Crisis: Unraveling the Perfect Storm

View our original article Texas HCS Waitlist Crisis: The Long Road to Services for Individuals with Intellectual and Developmental Disabilities here. 

Introduction

In Texas, the Home and Community-Based Services (HCS) program is a vital lifeline for thousands of individuals with intellectual and developmental disabilities (IDD). The program provides essential services, including daily living assistance, respite care, and supported employment. However, the program’s severe backlog—known as the HCS waitlist crisis—has left over 100,000 Texans waiting years, sometimes up to 15 years, for critical care and support. This article delves into the roots of the HCS waitlist crisis, the human stories behind the statistics, the state’s response, and the potential paths forward to provide better care for vulnerable Texans.

The Origins of the Crisis: What is HCS and How Did the Waitlist Begin?

The HCS program was created to provide alternatives to institutional care, allowing individuals with IDD to live in community-based settings. Over the years, HCS has expanded in scope to include an array of services that support independent living. However, the program has always struggled with limited capacity, and with Texas experiencing rapid population growth, the demand has consistently outpaced available slots.

Population Growth and Program Capacity

In a state as vast as Texas, the need for IDD services is significant. As of early 2024, the HCS Interest List had grown to over 108,000 individuals, with the average wait time exceeding 5-7 years and, in some cases, stretching up to 15 years. What began as a manageable waitlist has ballooned into a monumental backlog due to population growth, limited funding, and inadequate policy interventions.

Systemic Failures and Funding Shortfalls

The HCS waitlist crisis is rooted in decades of underfunding, systemic inefficiencies, and an outdated application system that fails to meet the growing demand for IDD services. Despite Texas being one of the wealthiest states in the U.S., it consistently ranks near the bottom in per capita spending for health and human services. The state has yet to sufficiently expand resources to match the increasing demand for community-based disability services, leaving families in limbo and exacerbating the crisis.

Impact of the Medicaid Unwinding Process: Compounding the Crisis

In 2023, Texas began the process of "unwinding" its continuous Medicaid coverage, which had been temporarily expanded due to the COVID-19 pandemic. As a result, more than 2 million Texans, including a substantial number of children and individuals with disabilities, lost Medicaid coverage. The unwinding process has compounded the waitlist crisis, as many individuals who rely on Medicaid to access HCS services have been thrown into further uncertainty.

Procedural Denials and Bureaucratic Hurdles

One of the most significant issues during the Medicaid unwinding has been procedural denials. These occur when individuals lose their coverage due to administrative errors or failures to complete paperwork, rather than due to ineligibility. Texas’ procedural denial rate stood at a shocking 35%, far above the national average of 22%. For individuals with disabilities, navigating the bureaucratic maze of renewals and reapplications can be an insurmountable challenge, leading to unintended loss of services.

The Human Toll: Stories of Individuals on the Waitlist

Behind every number on the HCS waitlist is a human story—families struggling to provide care, individuals yearning for independence, and caregivers overwhelmed by the lack of support.

A Mother’s Fight for Services: Maria’s Story

Maria Gutierrez, a mother of two children with autism, has been on the HCS waitlist for over 10 years. For Maria, the wait has been emotionally exhausting, as she juggles the full-time care of her children while working multiple jobs to make ends meet. Her children, now teenagers, have not received the services they need to thrive in school or develop independent living skills.

"I feel like we’ve been forgotten," Maria says. "Every year, I call to check our spot on the list, and every year, we’re told to keep waiting."

Her story is not unique. Across Texas, families are in a similar position—waiting years for services that could drastically improve their loved ones' quality of life.

Benjamin’s Journey: Waiting for a Standing Wheelchair

Benjamin, a 9-year-old boy with cerebral palsy, has been waiting for a standing wheelchair, a device that would allow him to participate more fully in family life. His family has been on the HCS waitlist for eight years, and without the services he needs, Benjamin is unable to take part in basic household activities. "He just wants to help in the kitchen, or play like other kids," his mother explains. "But without that wheelchair, his mobility is limited."

Texas’ Strained Disability Services Network

The impact of the waitlist crisis extends far beyond the individuals on the list. Texas' network of safety net clinics, service providers, and caregivers is also feeling the strain, with 30% decreases in Medicaid revenue reported since the unwinding process began. This financial hit has forced clinics to cut back on staff and essential services like behavioral health, further limiting access to care for individuals with IDD.

Staffing Challenges and Burnout in the Sector

The shortage of Direct Service Providers (DSPs)—workers who provide hands-on care to individuals with disabilities—has become a crisis within itself. With wages remaining stagnant and workload demands increasing, DSPs are leaving the field in droves. Agencies have reported 90% staff turnover in some areas, creating a vicious cycle where fewer staff members are available to care for those who finally make it off the waitlist.

Crisis Diversion: A Stopgap Measure with Limitations

The Crisis Diversion Slot Program was introduced as a stopgap measure to provide immediate support for individuals at risk of institutionalization. Under this system, individuals in critical situations, such as losing a primary caregiver, can bypass the HCS Interest List to receive services immediately. However, the availability of these slots is limited by budgetary constraints and legislative allocations, leaving many individuals without emergency relief even in dire circumstances.

Eligibility Criteria for Crisis Diversion

To qualify for a Crisis Diversion slot, individuals must be at imminent risk of entering an institution, such as a nursing home or state-supported living center. They must also meet specific criteria related to their disability and current living situation. Unfortunately, even when individuals qualify, the limited number of slots means that not everyone in crisis can access immediate care.

Federal Funding and Missed Opportunities

The federal government has stepped in to offer support for Medicaid programs across the country, including Texas. Under the American Rescue Plan Act (ARPA), Texas received an additional 10% federal matching fund increase for Home and Community-Based Services (HCBS). Despite this, Texas has struggled to fully leverage federal funding opportunities, in part due to the state’s decision not to expand Medicaid under the Affordable Care Act (ACA).

Medicaid Expansion: A Political Standoff

Medicaid expansion has been a hotly debated issue in Texas for over a decade. Despite potential federal funding that could significantly alleviate the burden on Texas' healthcare and disability services, political opposition has blocked any meaningful expansion. As a result, Texas has forfeited an estimated $36.2 billion in federal funding that could have been used to improve services for individuals with disabilities and expand the availability of HCS waivers.

Community-Based Care: A Better Alternative to Institutionalization

In the realm of disability services, there has been a long-standing movement to shift away from institutional care and toward community-based care models. The HCS program was created with this exact goal in mind: to help individuals with intellectual and developmental disabilities (IDD) live fulfilling, independent lives within their communities, instead of being placed in institutions or nursing homes.

Texas offers several Medicaid waiver programs designed to provide community-based services for people with disabilities. These include the Community Living Assistance and Support Services (CLASS) program, Deaf-Blind with Multiple Disabilities (DBMD) program, and the Texas Home Living (TxHmL) program, among others. However, access to these programs is often limited due to long waiting lists and funding constraints.

The Benefits of Community-Based Care

Community-based care offers numerous advantages over institutional care, including:

• Increased Autonomy: Individuals living in their communities have more control over their daily routines, activities, and care decisions. They can live in environments tailored to their specific needs and preferences, providing them with greater dignity and independence.
• Personalized Care: Community-based services can be more personalized and flexible, allowing individuals to receive the care they need while maintaining connections with family, friends, and their broader community.
• Cost Efficiency: Studies have shown that community-based care can be more cost-effective than institutional care. Supporting individuals in their homes or community settings generally requires fewer resources than managing large-scale facilities.

Challenges in Expanding Community-Based Care

Despite the benefits of community-based care, Texas has struggled to meet the growing demand for these services. One of the biggest obstacles has been the lack of Direct Service Providers (DSPs), the frontline workers who provide personal care, transportation, and support services. Texas’ DSP workforce has been described as being in crisis, with high turnover rates, low wages, and insufficient support contributing to the shortage of qualified care workers.

Another significant barrier is the lack of funding to fully expand these services. Texas’ decision not to expand Medicaid under the Affordable Care Act has left the state without billions of dollars in federal funds that could have been used to bolster community-based programs. As a result, many individuals who would benefit from community-based services are left waiting for years on the HCS Interest List.

The Importance of Crisis Diversion Slots in the HCS Program

While the overall goal of the HCS program is to prevent institutionalization and provide long-term community-based support, the Crisis Diversion Slot Program plays a critical role in addressing emergency situations. These slots are reserved for individuals with disabilities who are at immediate risk of being placed in an institution, such as those who have lost their primary caregiver or are experiencing a significant deterioration in health.

Eligibility and Application Process for Crisis Diversion

The application process for a Crisis Diversion slot requires a Local Intellectual and Developmental Disability Authority (LIDDA) to submit comprehensive documentation to the Texas Health and Human Services Commission (HHSC). This includes proof that the individual meets the qualifications for the HCS program and that they are at imminent risk of institutionalization.

Despite the importance of these slots, the availability is extremely limited. Due to budgetary constraints, only a small number of Crisis Diversion slots are available at any given time, meaning that even individuals in desperate need of services may face delays in accessing care. This creates a dire situation for families who may be unable to provide the necessary support while they wait for an available slot.

State-Level Policy Responses to the HCS Waitlist Crisis

Over the years, Texas lawmakers have taken various steps to address the growing HCS waitlist crisis, though many of these efforts have fallen short of solving the underlying issues. The Texas Legislature has allocated funds to support the HCS program and the broader Medicaid system, but these efforts have not been sufficient to meet the demand for services.

88th Texas Legislature (2023)

During the 88th regular legislative session in 2023, the Texas Legislature allocated $31 million in general revenue and $61 million in federal funds to support the state's Medicaid unwinding process, which included efforts to address the massive workload of redetermining eligibility for over 5.9 million Texans. Additionally, $6.7 million in general revenue and $14.1 million in federal funds were earmarked for fiscal year 2025 to manage the continued influx of applications for Medicaid and HCS services.

However, many advocates argue that these allocations are not nearly enough to make a significant dent in the HCS Interest List. The state's overall approach to Medicaid policy has been widely criticized for being reactive rather than proactive. Texas’ decision not to expand Medicaid under the ACA has been a particularly contentious issue, as it has prevented the state from accessing additional federal funds that could have been used to improve the HCS program and reduce waitlist times.

Efforts to Streamline Eligibility Determination

In an attempt to address the backlog of Medicaid applications and renewals, Texas has begun exploring the use of express lane eligibility. This approach would allow the state to use already-verified information, such as a child's enrollment in the Supplemental Nutrition Assistance Program (SNAP), as an indicator for Medicaid and CHIP eligibility. While a bipartisan bill supporting this initiative passed the Texas House in 2023, it failed to clear the Senate, highlighting the deep divisions within the state’s political landscape on Medicaid reform.

Behavioral Health and Telehealth Initiatives

Recognizing the importance of maintaining access to mental health services, particularly in light of the Medicaid unwinding process, Texas policymakers have also considered expanding access to behavioral telehealth services for Medicaid enrollees. The COVID-19 pandemic saw a significant increase in the use of telehealth for mental health and substance use services, and advocates are pushing for these services to be made permanent for individuals with disabilities who rely on Medicaid.

Federal Funding and the Role of Medicaid Expansion

One of the most significant factors contributing to the HCS waitlist crisis in Texas is the state’s decision not to expand Medicaid under the Affordable Care Act (ACA). By refusing Medicaid expansion, Texas has missed out on billions of dollars in federal funds that could have been used to improve access to healthcare and disability services.

The Financial Cost of Not Expanding Medicaid

From 2014 to 2024, Texas residents paid an estimated $36.2 billion in federal taxes that have gone toward Medicaid expansion in other states. Had Texas chosen to expand Medicaid, it would have received a significant portion of these funds, which could have been used to reduce the HCS waitlist, improve community-based care options, and address the workforce shortages in the disability services sector.

The American Rescue Plan Act (ARPA)

The American Rescue Plan Act of 2021 provided a temporary 10% increase in federal Medicaid matching funds for Home and Community-Based Services (HCBS). While Texas received these additional funds, the state has been slow to fully implement the necessary reforms to maximize their impact. This has led to missed opportunities for improving service delivery and reducing the waitlist for essential programs like HCS.

Money Follows the Person (MFP) Demonstration Program

The Money Follows the Person (MFP) demonstration program, funded by the federal government, aims to help individuals with disabilities transition from institutional settings to community-based care. Since its inception, the program has helped thousands of Texans move out of nursing homes and into more independent living arrangements. However, the effectiveness of this program has been limited by the overall lack of funding for community-based services in Texas.

A Broader Crisis: Medicaid Coverage Gaps in Texas

Texas has the largest Medicaid coverage gap in the United States, with an estimated 772,000 residents falling into the gap. These individuals are not eligible for Medicaid due to Texas' strict eligibility criteria, yet they also do not qualify for subsidies under the ACA to purchase insurance on the health marketplace. This coverage gap disproportionately affects adults without children and parents with very low incomes.

Demographics of the Coverage Gap

• 77% of those in the coverage gap are people of color, with the majority being Latino (58%) and Black (14%).
• 42% are parents with children at home, and 40% are women of reproductive age.
• 13% are individuals with disabilities, further compounding the challenges for those already on the HCS waitlist.

Consequences of the Coverage Gap

The lack of Medicaid expansion has had profound consequences for health outcomes in Texas. Between 2014 and 2017, an estimated 15,600 preventable deaths occurred among adults aged 55-64 in non-expansion states like Texas. Moreover, the coverage gap exacerbates racial disparities in healthcare access, as people of color are disproportionately affected by the state’s refusal to expand Medicaid.

Success Stories: The Transformative Power of HCS Services

While the HCS program has faced significant challenges, there are many success stories that demonstrate the transformative impact that timely access to services can have on individuals with disabilities and their families. These stories highlight the importance of expanding access to community-based care and reducing the HCS waitlist.

Gabby’s Journey to Independence

Gabby, a middle school student who is hard of hearing, struggled academically and socially due to her lack of access to necessary assistive technology. However, after receiving support through Disability Rights Texas (DRTx), Gabby was provided with the technology and accommodations she needed to succeed. With proper support in place, Gabby achieved straight A’s, won her school’s science fair, and experienced a significant boost in self-esteem.

DeShawn’s Life-Changing Services

DeShawn, a 22-year-old Texan with autism, had been on the HCS waitlist for nearly eight years. During that time, his family struggled to provide the specialized care he needed. When DeShawn finally received an HCS slot, his life changed dramatically. The services allowed him to participate in supported employment, develop life skills, and integrate more fully into his community.

His mother, Kimberly, described the relief of finally receiving services after years of uncertainty: "It’s like a weight has been lifted. DeShawn can be independent, and we can finally plan for the future."

These stories are just a few examples of how community-based services can drastically improve the lives of individuals with disabilities, fostering independence and participation in society.

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Paths Forward: Solutions to the Texas HCS Waitlist Crisis

Addressing the Texas HCS waitlist crisis will require a multi-faceted approach that includes increased funding, policy reforms, and strategic investments in workforce development. Below are some of the potential solutions that could help reduce wait times and improve access to services for individuals with disabilities.

1. Increased State Funding and Federal Collaboration

One of the most straightforward ways to address the waitlist crisis is for Texas to increase its state funding for Medicaid and HCS programs. By allocating more resources to these programs, the state could expand the number of available slots and reduce wait times for individuals on the Interest List.

Additionally, Texas could pursue greater collaboration with the federal government to maximize available funding opportunities, such as the Money Follows the Person program and other HCBS initiatives.

2. Medicaid Expansion

Expanding Medicaid under the Affordable Care Act would provide Texas with billions of dollars in federal funds, which could be used to improve services for individuals with disabilities. Medicaid expansion could also help close the coverage gap and ensure that more Texans have access to healthcare, reducing the strain on the state’s Medicaid system and the HCS waitlist.

3. Workforce Development and DSP Support

Addressing the shortage of Direct Service Providers (DSPs) is critical to improving service delivery in the HCS program. Texas should invest in training, recruitment, and retention programs for DSPs, offering competitive wages and benefits to encourage more individuals to enter the field.

Additionally, Texas could explore offering financial incentives, such as loan forgiveness programs or housing assistance, to individuals who choose to work in the disability services sector.

4. Streamlining the Medicaid Application Process

Simplifying the Medicaid application and renewal process could help reduce the number of procedural denials and ensure that individuals who are eligible for services can access them without unnecessary delays. Implementing express lane eligibility, which uses information from other public assistance programs to determine Medicaid eligibility, could streamline the process and prevent coverage gaps.

5. Expanding Telehealth Services

The COVID-19 pandemic demonstrated the potential of telehealth to improve access to healthcare services for individuals with disabilities. Texas should consider making permanent the expanded access to telehealth services, particularly for behavioral health and other specialized services. Telehealth could provide individuals in rural or underserved areas with access to care without requiring lengthy travel.

6. Enhancing Crisis Diversion Programs

Expanding the availability of Crisis Diversion slots could provide immediate relief for individuals and families in emergency situations. Texas should consider increasing funding for the Crisis Diversion Program and revisiting the eligibility criteria to ensure that individuals in crisis can access services promptly.

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Conclusion: Addressing the Crisis to Ensure a Brighter Future

The Texas HCS waitlist crisis is a complex and urgent issue that affects thousands of individuals with disabilities and their families. Without timely access to the services they need, many Texans face significant challenges in achieving independence, participating in their communities, and maintaining their quality of life.

Addressing this crisis will require bold policy decisions, increased funding, and a renewed commitment to the health and well-being of the state’s most vulnerable residents. By taking decisive action, Texas can reduce wait times, improve service delivery, and ensure that individuals with disabilities have the support they need to lead fulfilling lives.