Intellectual and developmental disabilities (I/DD) services have long faced significant challenges, particularly regarding reimbursement and workforce stability. A recent report released jointly by the ANCOR Foundation and United Cerebral Palsy (UCP) highlights how the COVID-19 pandemic has only exacerbated these existing problems, creating an urgent need for systemic change. Today, more people than ever are stuck on waiting lists for vital I/DD services, and the report paints a stark picture of the obstacles that stand in the way of timely care and support. This situation is a clear reflection of the growing I/DD services workforce crisis that demands immediate attention.
Understanding the Current Landscape: What the Report Reveals
The ANCOR Foundation, which represents over 1,800 I/DD provider members nationwide, partnered with UCP to conduct a thorough two-part study assessing the state of I/DD services in the United States. By analyzing more than 80 different data points, the report illustrates a systemic lack of adequate funding and support for these critical services at both the state and federal levels.
One of the central focuses of the report is the Medicaid-funded Home and Community Based Services (HCBS) program, which reimburses a significant portion of I/DD support services. The study reveals that reimbursement rates have not kept pace with the rising costs of care or the demands of the workforce, creating ripple effects throughout the system and worsening the I/DD services workforce crisis.
Workforce Challenges: The Backbone of I/DD Services is Under Strain
Direct Support Professionals (DSPs) provide hands-on assistance to individuals with I/DD, helping them with daily living activities, community integration, and health management. Yet, this essential workforce faces unprecedented challenges. The report shows that the DSP turnover rate nationally increased to 43.6% in 2020—a troubling sign of instability. Additionally, vacancy rates for full-time DSP positions surged by nearly 45% between 2019 and 2020.
Several factors contribute to these workforce shortages, underscoring the severity of the I/DD services workforce crisis:
- Inadequate wages: DSPs’ wages are largely determined by Medicaid reimbursement rates, which have historically been low. The report stresses that these wages fail to reflect the skill and dedication required for these demanding roles.
- Pandemic-related challenges: Unlike many private-sector jobs that responded to labor market upheaval by offering hazard pay and wage increases, community disability service providers—almost entirely reliant on Medicaid funding—could not afford to do the same.
- Workforce demographics and equity issues: Approximately 63% of DSPs identify as Black, Indigenous, or people of color (BIPOC), highlighting broader social equity concerns. Despite being a workforce rich in diversity, DSPs are among the lowest-paid caregivers in the healthcare continuum.
The consequences of these workforce challenges are tangible: fewer DSPs mean fewer services can be delivered, leading to delays in support for individuals with I/DD and increased strain on their families. This is the core issue driving the I/DD services workforce crisis nationwide.
The Waiting List Crisis: Thousands Left in Limbo
The report’s national assessment uncovered a staggering 589,940 individuals on HCBS waiting lists for I/DD services across all 50 states and the District of Columbia. Even more concerning, 78% of those waiting are concentrated in just five states, indicating uneven access to care across the country.
Families and individuals waiting for services often face months or even years of uncertainty without clear communication about when support might become available. This lack of transparency adds emotional and financial stress to families already managing complex care needs, compounding the effects of the I/DD services workforce crisis.
Why Are the Wait Lists So Long?
The report ties the high waitlist numbers directly to workforce instability. With high turnover and vacant DSP positions, providers struggle to deliver services to everyone in need. The insufficient Medicaid reimbursement rates limit providers’ ability to offer competitive wages, making it difficult to recruit and retain qualified staff.
Without adequate staff, providers can only serve a fraction of the population needing assistance, which causes waiting lists to grow and the backlog to worsen. This vicious cycle is the heart of the I/DD services workforce crisis.
Recommended Solutions: What Needs to Change
ANCOR and UCP offer a series of thoughtful recommendations designed to address the root causes of the crisis:
- Federal incentives to states: The organizations urge the Biden administration to incentivize states to use federal funding strategically to address workforce shortages. Federal dollars should be tied to measurable improvements in wage levels and workforce stability.
- Standard Occupational Classification (SOC) for DSPs: A key ask is for the U.S. Bureau of Labor Statistics to create a distinct SOC code for DSPs. Currently, DSPs are grouped under broad caregiving or support roles, which allows states to justify low wages based on comparison to other professions. Recognizing DSPs as a distinct occupation would help legitimize fair wage demands and drive better reimbursement rates, directly targeting the I/DD services workforce crisis.
- Aggressive pursuit of federal funding: States are encouraged to proactively apply for every federal funding opportunity targeting I/DD services, ensuring that available resources are fully utilized to expand capacity.
- Focus on stabilizing the workforce: Spending plans should prioritize direct support workforce retention strategies, such as wage increases, benefits, training, and career development pathways.
- Transparent waitlist management: States should provide families with clear, accurate timelines for service availability and improve communication about waitlist status.
The Broader Implications: Why This Matters
The I/DD community represents a vital part of our society, encompassing individuals with a broad range of abilities and needs. Access to timely, high-quality support services directly impacts quality of life, independence, and long-term health outcomes.
When the system fails to support the workforce or adequately fund services, the most vulnerable people pay the price. Families face emotional and financial hardship, and individuals with I/DD may experience avoidable setbacks in development, health, and community engagement.
The I/DD services workforce crisis is not just a labor market issue—it’s a social and moral imperative.
The Path Forward: A Call to Action
Despite the daunting statistics and challenges, ANCOR and UCP’s report is ultimately a call to action, grounded in hope and commitment. The authors acknowledge the difficulties but emphasize that these realities drive their determination to fight for better funding, workforce support, and policy change.
For real progress, coordinated efforts between federal and state governments, service providers, advocates, and the I/DD community will be essential. Only through sustained investment and strategic policy decisions can the growing waiting lists be reduced, the workforce stabilized, and the promise of accessible, quality care fulfilled for all individuals with I/DD.
Addressing the I/DD services workforce crisis is critical to achieving these goals.
Conclusion
The pandemic has exposed and intensified long-standing issues within the I/DD services system—issues that demand urgent attention. As the ANCOR Foundation and United Cerebral Palsy report clearly illustrates, the path forward must include fair reimbursement, workforce recognition and support, and expanded funding opportunities.
Families, advocates, and providers alike are counting on policymakers to act decisively. The time to transform I/DD services is now, ensuring that everyone who needs support can access it promptly, with dignity and respect. Tackling the I/DD services workforce crisis head-on will bring us closer to that future.
If you or your family are affected by intellectual or developmental disabilities, staying informed about these policy changes and advocacy efforts is critical. Together, we can support a future where no one is left waiting for the care they deserve.
Would you like help connecting to local resources or advocacy organizations focused on I/DD services? I’m here to assist.
