March 20, 2023
Chairman Bernie Sanders
Ranking Member Bill Cassidy
U.S. Senate Committee on Health, Education, Labor, and Pensions
Washington, DC 20510
Re: NCD’s responses to the Senate HELP Committee’s Request for Information (RFI) to address the nation’s healthcare workforce shortage
Dear Chairman Sanders and Ranking Member Cassidy:
I write to you on behalf of the National Council on Disability (NCD) in response to your Committee’s Request for Information (RFI) to address the nation’s healthcare workforce shortage. NCD is an independent federal agency charged with providing advice and recommendations regarding disability policy to the President, Congress, and federal agencies. The responses below are based on NCD’s past research and are intended to assist the Committee in its development of bipartisan solutions that will address the nation’s health care workforce shortages in two key areas – to address the shortage of qualified healthcare providers properly trained to assist people with intellectual and developmental disabilities (I/DD) and to address the shortage of direct support professionals.
In order to address the shortage of healthcare providers properly trained to treat people with intellectual and developmental disabilities (I/DD), Congress should designate people with I/DD as a Special Medically Underserved Population under the Public Health Service Act.
NCD first recommended this designation in our 2017 report, Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities. In developing this recommendation to Congress, NCD relied in part on information from the American Academy of Developmental Medicine and Dentistry (AADMD) Consensus Statement on Health Disparities for Persons with Neurodevelopmental Disorders and Intellectual Disabilities which found that people with I/DD regularly face an uphill battle in finding clinicians properly trained to treat them. This is due in part because most physicians and dentists lack the proper training and exposure with respect to the health and psychosocial needs of this population. According to one study, more than fifty percent of dental and medical school deans have stated that their graduates are not competent to treat patients with I/DD.
The lack of comprehensive disability clinical-care education and disability competency training among medical, nursing and other healthcare professionals perpetuates discrimination in healthcare against people with disabilities. Discrimination in the form of people with disabilities not afforded and equal opportunity to receive the same quality of care as their nondisabled counterparts, resulting in significant health disparities between people with disabilities and those without. Most federally financed medical, nursing, healthcare professional, and allied health professional schools, as well as post-graduate residency and fellowship programs simply fail to incorporate disability clinical care into curricula or training. In a 2019–20 national survey, only 40.7 percent of outpatient physicians were very confident that they could provide the same quality of care to patients with disability as to their nondisabled patients. Moreover, physicians often lack the knowledge, experience, and skills to distinguish clinical concerns arising from disability from those related to other health conditions. One’s apparent disability – even when unrelated to the reason for one’s health care visit – can result in diagnostic overshadowing the clinical concern and can have a negative impact during the health care visit. This lack of familiarity and understanding of disability is detrimental for quality of care, contributing to delays in diagnosis and treatment, unsafe care, and inequities in care.
An abundance of research indicates that the lack of disability competency and interdisciplinary training among medical professionals contributes to the lack of proper healthcare for people with disabilities across the nation. While a limited number of medical schools in the US do provide some degree of disability competency training, the overwhelming majority do not. Standard, comprehensive cross-disability clinical-care education and training of medical, nursing, and other healthcare professionals is essential for a better educated healthcare workforce trained with an understanding of disability.
In order to address health disparities of people with I/DD specifically, it is critical that people with I/DD be legally identified as a SMUP, with the corresponding benefits associated with that designation. These benefits would include (among others): access, doctors accepting training to care for people with I/DD would receive loan repayment and training through the Health Resource Services Administration’s Workforce Development and training programs including the national Health Service Corps Scholarships; and, potentially, incentives for physicians to treat the designated population in the form of higher Centers for Medicare and Medicaid Services reimbursement rates for physician services.
The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act (“HEADs UP Act”), formerly introduced in the 117th Congress as H.R. 6075 and soon to be reintroduced in the current Congress, would designate people with I/DD as a SMUP, thereby initiating a pipeline of adequately trained healthcare professionals into the workforce. While the HEADs UP Act previously did not have a Senate companion bill, NCD encourages the HELP Committee give this legislation serious consideration in its discussions to address the workforce shortage of providers properly trained to treat people with I/DD, and to consider if it could be expanded to address other subpopulations with well-documented health disparities, including those with mobility disabilities.
NCD recently identified legislative and administrative solutions to address the nation’s direct care workforce shortage.
In November of 2022, NCD released its report, Strengthening the HCBS Ecosystem – Responding to Dangers of Congregate Settings during COVID-19, which discusses the direct care workforce shortage and its impact on the ability of people with disabilities to live in their homes and communities. Direct care workers (DCWs) are an essential workforce, and include personal care assistants, home health aides, certified nursing assistants, and home care aides. They are the most important individuals for directly assisting people with disabilities, of any age, so that they can live in their communities. The unfilled need for DCWs is at a crisis level, and the shortage of these workers has created an emergency for millions of people with disabilities, increasing the risk of institutionalization, or remaining in institutional settings like nursing homes and group homes against one’s will, for those who cannot obtain their services for care in the community. According to the most recent estimates from the Centers for Disease Control and Prevention (CDC), 4.5 million people were consumers of home health in 2016, and in a recent study, 58% of home- and community-based services (HCBS) providers stated they intend to discontinue some amount of in-home programs and services. To have such a significant reduction in services to a population this large has and will continue to have serious implications for independent living and the ability to live in one’s home – bedrock national disability policy goals rooted in the Americans with Disabilities Act for full integration.
A major factor driving the shortage of DCWs is low wages. Home health and personal care workers had a median hourly wage of only $11.57 in 2019. The wages are so low that nearly 20% of care workers live in poverty and more than 40% rely on some form of public assistance. Every convening session held in the preparation of NCD’s HCBS Ecosystem report reached the same conclusion: DCWs must be better compensated. This is even more important with an increased competition for entry-level workers across the larger labor market. Many states have increased their minimum wage, which raises the floor for all low-income workers, but may narrow the gap for compensation for challenging jobs in HCBS service compared to less demanding employment options.
The pandemic exacerbated the shortage of DCWs because many left the workforce due to lack of testing and sufficient personal protective equipment, fear of exposure to COVID-19 infection, lack of COVID-19 testing, reliance on public transportation, lack of accessible childcare, competing family obligations and potential infection risk to family members. Also, DCWs were not recognized as an “essential workforce” by local law enforcement and were not prioritized for vaccination. Many more DCWs left the workforce after contracting the virus. Others left to take care of family members or protect themselves from exposure, making an already too small of a workforce to support people with disabilities to live in the community, even smaller.
To meet the growing demand for DCWs, it is essential to create a workforce pathway. Based on a trade model, high school students could complete direct care training while earning their diploma and then move directly into their job after graduation. Opportunities for post-secondary educational credit and a career ladder where workers could envision upward movement could also fortify a pipeline to bring more people into the workforce while retaining those who are there. DCWs could be a meaningful entry-level position for physical therapists, occupational therapists, social workers, nurses, and childcare workers. Work/study, practicum, or internship programs in each of these fields could provide an influx of entry-level workers to the direct care workforce. Apprenticeship programs also hold potential, but currently there are few and they are largely underutilized.
In our HCBS Ecosystem report, NCD advised the following legislative pursuits:
- Congress should enact legislation that includes significant funding for HCBS, similar to the $150 billion in HCBS funding in the Build Back Better Act, and increase pay for the direct care workforce, to facilitate individuals to live in the community.
- Congress should require the Department of Labor (DOL) to immediately devise a plan to address the direct care workforce labor shortage by, for example, creating apprenticeship programs to incentivize individuals to become direct care workers and setting and raising standards for pay, benefits, and working conditions.
- Congress should enact legislation requiring the Department of Citizenship and Immigration Services to establish a new Employment-Based Immigration Visa with a specific preference for direct care workers.
NCD recognizes that these legislative actions alone will not create a robust DCW pathway. For this reason, NCD identified the following solutions for the Department of Labor (DOL), the Centers for Medicare & Medicaid Services (CMS), and the Department of Education (ED) needed to incentivize people to enter the DCW field which may be of interest to this Committee for further consideration:
- DOL and CMS should jointly or separately establish a public–private partnership that matches federal dollars with productive private capital to increase funding for HCBS and increase wages and benefits for direct care workers.
- DOL should designate home health aides and direct support providers as a “Schedule A” shortage occupation.
- DOL should devise a plan to address the direct care workforce labor shortage by, for example, creating apprenticeship programs to incentivize individuals to become direct care workers; setting and raising standards for pay, benefits, and working conditions.
- DOL should establish, with the ED, grants for community colleges to provide career training/courses on direct service to address the current and growing need for direct service workers.
- DOL should collect data on home health care workers to track worker trends over time and help policy makers identify areas for improvement of the profession and career development.
- The Department of Citizenship and Immigration Services should create a new employment-based immigration visa with a specific preference for direct care workers and work with the Department of Labor and the Centers for Medicare and Medicaid Services to inform employers, including home health agencies nationally.
Thank you for the opportunity to share NCD’s research and proposed solutions to address the nation’s healthcare workforce shortage. Should you wish to discuss NCD’s responses above, please contacts Joan Durocher, General Counsel and Director of Policy, at firstname.lastname@example.org.
Andrés J. Gallegos
 American Academy of Developmental Medicine and Dentistry Consensus Statement on Health Disparities for Persons with Neurodevelopmental Disorders and Intellectual Disabilities. http://aadmd.org/articles/health-disparities-consensus-statement. (Accessed October 16, 2017.)
 Kornblau, Barbara L., JD, OTR, FAOTA. “The Case for Designating People with Intellectual and Developmental Disabilities as a Medically Underserved Population.” Autistic Self Advocacy Network, 9.
 Monika Mitra, et al., Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States, Health Affairs 2022 41:10, 1379-1386
 Iezzoni LI., et al., Physicians’ perceptions of people with disability and their health care. Health Aff (Millwood). 2021;40(2):297–306.
 The Joint Commission (on hospital accreditation), Sentinel Event Alert, 2022 (65). https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety-topics/sentinel-event/sea-65-diagnostic-overshadowing-6-16-22-final.pdf.
 Krahn et al. (2015). Persons with Disabilities as an Unrecognized Health Disparity Population, 105 Am. J. Pub. Health S198, S204 (“Every major report addressing the poor health of people with disabilities has called for improvements in training of health care providers about adults with disabilities.”).
 Cheng, E., et al, Mobility impairments and use of preventive services in women with multiple sclerosis: observational study, BMJ, vol. 323, October 27, 2001; Merten, Julie, et al., Barriers to cancer screening for people with disabilities: A literature review, Disability and Health Journal 8 (2015) 9-16; Solenberg, AK Jr., et al., Barriers to Colocrectal Cancer Screening for People with Spinal Cord Injuries and/or Disorders: A Qualitative Study, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100950
 ANCOR. (2021, September). The State of America’s Direct Support Workforce Crisis 2021. Retrieved from: https://www.paproviders.org/ancor-issues-findings-from-2021-state-of-ame... -crisis-survey/.