SILVER SPRING, MD – The Association of University Centers on Disabilities is deeply concerned about the Administration’s changes to the Department of Health and Human Services (HHS). The changes include mass staffing reductions and reorganization of many sub-agencies in the name of reducing duplicity and increasing efficiency. These actions will eliminate expertise and negatively impact people with disabilities and their families.
Last week, the Administration announced its intention to move significant work supporting students with disabilities under the Individuals with Disabilities Education Act (IDEA) and other education services from the Department of Education to HHS. Today, the Administration announced its intention to cut personnel and absorb agencies serving those same individuals with disabilities at that same Department (HHS). At best this is ill-advised and at worst, this is a malicious undercutting of vital programs and supports for people with disabilities. Furthermore, the continued threat to downsize the National Institutes of Health (NIH) and its disability research and training capacity, and the absorption of Health Resources Services Administration (HRSA) and its training of personnel who work with people with disabilities, sacrifices knowledge and expertise. Lastly is the Administration for Community Living (ACL) which the current Administration is disassembling. ACL is an agency that helps ensure people with disabilities can meet their basic needs through federal funding for nutrition assistance, caregiver support and home care programs. Splitting up ACL across several other agencies in HHS who lack the knowledge and capacity to run ACL’s programs is a direct threat to the rights of people with disabilities to live independently.
“This Announcement represents one of many attacks on people with disabilities and the promises under the Americans with Disabilities Act for independent living, economic self-sufficiency, equal opportunity, and full participation in society,” says Lillie Heigl, AUCD’s Senior Policy Advisor. “HHS fulfills vital functions and supports to ensure that Americans with disabilities have a chance to live dignified, independent lives within the community of their choosing. The HHS announcement by the Administration jeopardizes the health and safety of people with disabilities by decimating the systems that support them. To be clear, the work of HHS is not wasteful, fraudulent, or abusive.”
AUCD supports 143 University-based Network members in their research, training, education, and service. Together, AUCD and Network members can promote the quality of life, health, and well-being of people with disabilities so they can participate fully in their communities. The reorganization and staffing cuts at HHS threaten the work of AUCD’s Centers and Programs. Most importantly, these actions will have impacts on people with disabilities, their families, and their communities.
University Centers of Excellence on Developmental Disabilities (UCEDDs)
The 68 UCEDDs are a nationwide Network of Centers with core funding from the Administration on Community Living (ACL) within HHS. ACL was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and fully participate in their communities. UCEDDs represent an expansive national resource for addressing issues, finding solutions, and advancing research related to the needs of individuals with developmental disabilities and their families. They have played key roles in every major disability initiative over the past four decades. Independence, productivity, and community inclusion are key components of their mission. In the absence of UCEDD programs, people with disabilities, members of their families, state and local government agencies, and community providers will lose a vital connection to a program that produces impactful research, services, and training.
Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs
The 60 LEND Programs are federally funded under the Autism CARES Act and are administered by the HRSA's Maternal and Child Health Bureau. LEND Programs improve the lives of people with disabilities by providing high-quality, interdisciplinary training to health care providers and other professionals that address the needs of children and youth with autism and other developmental disabilities. By providing academic, clinical, leadership, and community-oriented training opportunities, LEND Programs prepare trainees to assume leadership roles and help meet the complex needs of children with autism and other developmental disabilities. In 2022, LEND trainees and faculty provided 138,254 diagnostic services to verify or rule out autism or other developmental disabilities. In the absence of LEND Programs, there will be detrimental workforce shortages of qualified professionals able to screen, refer, and provide services to children and youth with autism and other developmental disabilities.
Intellectual and Developmental Disabilities Research Centers (IDDRCs)
The 15 IDDRCs are and remain the nation's first and continuing sustained effort to prevent and treat disabilities through biomedical and behavioral research. AUCD’s IDDRC membership organizations are funded by NIH NICHD to advance our understanding of the biological processes that contribute to brain health across the life span. IDDRCs commit their funds to strengthen the research ecosystem; each IDDRC provides access to resources, training, and mentoring opportunities for approximately 300 federally funded Research Projects each year, many of which are directly funded or co-funded alongside NICHD, such as the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute of Mental Health (NIMH). Through this invaluable capacity-building and infrastructure support, the IDDRC Network amplifies the overall impact and reach of NIH Research Projects. In the absence of IDDRCs, there will be a gap in discoveries and technologies that have been essential for advancing healthcare for people with disabilities as well as the loss of an ecosystem that advances participation of people with disabilities within the research enterprise.
Action Item
Call your Members of Congress—your Representative and Senators—and reach out to your state officials, such as the governor’s office, to educate them on the important work that the Department of Health and Human Services (HHS) does to protect and support people with disabilities and their families. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.
AUCD is available for contact. Please contact Lillie Heigl, Senior Policy Advisor, at [email protected].
About AUCD
The membership of AUCD includes a national Network–serving every state and territory–of 68 University Centers for Excellence in Developmental Disabilities (UCEDDs), 60 Leadership Education in Neurodevelopmental and Other Related Disabilities (LENDs) Programs, and 15 Intellectual and Developmental Disabilities Research Centers (IDDRCs). Together, these Centers and Programs provide a direct national impact through direct services, the development of new professionals, and the use of new knowledge generated from our research. Find a Center or Program near you. Explore AUCD’s Policy and Advocacy webpage.
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