The outlook for community-based intellectual and developmental disability (IDD) providers became increasingly dire in 2023, as reports from the nonprofit advocacy organization American Network of Community Options and Resources (ANCOR) show a significant worsening of challenges within the sector. ANCOR’s poll, which surveyed professionals at 581 organizations operating in 45 states and the District of Columbia, revealed a troubling reality: 60% of the organizations reported they were likely to shut down programs if the current high rates of turnover and workforce shortages were not addressed. This finding is particularly concerning, as it represents a 9% increase in pessimism compared to 2022. The sector’s fragility was underlined by the fact that even gains made in other areas were insufficient to offset the looming crisis, signaling the urgent need for reform in light of the growing IDD workforce shortage.
The heart of the issue lies in the critical shortage of Direct Support Professionals (DSPs). These professionals play an essential role in the lives of individuals with IDD, providing not only caregiving but also helping individuals live more dignified and independent lives. DSPs work directly with patients, assisting with daily living activities and ensuring that individuals with disabilities can fully participate in society. However, despite the immense importance of this role, the DSP workforce is shrinking, and the sector is struggling to fill these vital positions. The demand for DSPs has grown alongside the increasing need for community-based services, but the supply has not kept pace, creating a situation where providers are facing impossible staffing shortages. The IDD workforce shortage continues to worsen, leaving many services understaffed and struggling to meet the needs of the population they serve.
Understanding the DSP Workforce and Its Challenges
The U.S. Bureau of Labor Statistics (BLS) does not track DSPs as a distinct occupation, which makes it challenging to accurately gauge the size and scope of the workforce. However, data from related fields can offer some insight into the situation. Home health and personal care aides, which include some DSPs, totaled around 3.72 million workers in 2022, according to BLS figures. Despite this seemingly large number, the gap between supply and demand for DSPs remains significant, with no immediate signs of improvement. In fact, another report cited by ANCOR predicts that demand for home-based care services will increase by 35% over the next decade, which will require the addition of 1 million new jobs for direct care workers, including DSPs.
This growth in demand is not surprising, as more individuals with IDD are seeking services, and communities are placing a greater emphasis on providing care in home and community-based settings rather than institutional environments. However, this also means that the available workforce, which has already been stretched thin, will face even greater strain. The IDD workforce shortage remains a looming challenge, with no quick or easy solution in sight.
The Effects of Staffing Shortages: A Ripple Effect Across the Sector
The impacts of these shortages are far-reaching. The ANCOR survey revealed that 95% of organizations reported experiencing “moderate or severe” staffing shortages over the past year. This shortage is not only affecting current staff but also causing providers to turn away new referrals. In fact, 77% of organizations surveyed admitted to turning away new clients due to a lack of available staff. The situation is exacerbated by the challenges organizations face in maintaining quality standards, with 72% of providers struggling to establish and uphold care quality due to insufficient staffing. The lack of staff also limits the ability of providers to serve those in need, with 54% of organizations operating in areas where there are few or no alternative service providers.
For organizations focused solely on IDD case management, the problem is even more pronounced. A staggering 75% of these organizations reported that they had difficulty connecting individuals to the necessary services because of a lack of available providers. This disconnect between the need for services and the availability of providers has created a crisis in the IDD sector, where people are increasingly finding themselves without access to the care and support they need. The IDD workforce shortage continues to impact these organizations’ ability to meet the growing demand for services.
Underinvestment in Medicaid: The Root Cause of the Shortage
At the heart of the staffing crisis is a systemic issue: underinvestment in Medicaid. Medicaid is a critical source of funding for many community-based IDD service providers, yet the current reimbursement rates are insufficient to cover the costs of providing quality care. The median hourly wage for a DSP is around $14.50, which is significantly lower than what is offered in many other industries with similar job requirements, such as retail and fast food. However, unlike these industries, DSP providers do not have the flexibility to adjust wages based on market forces. Instead, they are forced to rely on payments set by public bodies, which are often insufficient to attract and retain qualified staff.
This underinvestment in Medicaid has led to staggering turnover rates in the DSP workforce, with national turnover hovering around 44%. Vacancy rates in many regions exceed 20%, which means that a significant portion of the workforce is either leaving or not being replaced in a timely manner. As a result, providers are left scrambling to fill positions and maintain the level of care required for their patients. The IDD workforce shortage is compounded by these factors, making it harder for organizations to hire and retain qualified staff.
Legislative Solutions: What Needs to Be Done
ANCOR’s report does not leave the sector without hope, as it suggests several key initiatives to address the workforce shortage and provide support to DSPs. One of the primary recommendations is to increase federal funding for state Medicaid programs that pay for home- and community-based services. By boosting Medicaid funding, providers would have the financial resources necessary to offer competitive wages and attract more workers into the field. To address this, ANCOR points to two key bills currently before Congress: the HCBS Relief Act (S. 3118/H.R. 6296) and the Better Care Better Jobs Act (S. 100/H.R. 547). These bills would provide much-needed funding to support the direct care workforce and improve the quality of care for individuals with IDD.
Another recommendation is to establish a standard occupational classification (SOC) for DSPs. Since the federal government currently does not track DSPs as a separate occupation, establishing an SOC would help policymakers better understand the needs of the sector and ensure that it receives the attention it deserves. This would also allow for more accurate data collection and help policymakers make informed decisions about workforce development. This effort is critical to addressing the IDD workforce shortage, as it will raise awareness about the critical need for DSPs and their role in providing care for individuals with IDD.
Finally, ANCOR calls for the passage of the Supporting Our Direct Care Workforce and Family Caregivers Act (S. 1298) and the Direct CARE Opportunity Act (H.R. 4720). These bills would help create a clear career pipeline for DSPs, improving workforce retention and professionalizing the occupation. By offering training and career development opportunities, these initiatives would help elevate the DSP profession and ensure that more individuals are encouraged to pursue this vital career. These initiatives could help mitigate the growing IDD workforce shortage and provide the support that providers and DSPs desperately need.
The Road Ahead: A Call to Action
The crisis facing community-based IDD providers is clear, and without significant intervention, it will continue to worsen. The shortage of DSPs is not just an issue for the workforce—it directly impacts the individuals with IDD who rely on these services to live fulfilling, dignified lives. The current trajectory of underinvestment in Medicaid and the lack of support for DSPs threatens the availability and quality of care for those who need it most. The IDD workforce shortage must be addressed now to prevent more programs from shutting down and more individuals from going without care.
However, there is hope for a better future. By increasing federal funding for Medicaid, establishing a standard occupational classification for DSPs, and passing critical legislation to support the workforce, the situation can be turned around. But this will require a concerted effort from policymakers, industry leaders, and the public to recognize the value of direct support professionals and the essential role they play in the lives of individuals with IDD. Now is the time to act, before the crisis deepens further and more programs and services are lost.
