More than seven million people in the United States have an intellectual or developmental disability (I/DD), encompassing conditions like autism spectrum disorder, cerebral palsy, Down syndrome, and other developmental disorders that affect mental and physical functioning.[i] Medicaid plays a crucial role in supporting this high-needs population, accounting for almost a third of total Medicaid expenditures, including those through Home and Community-Based Services (HCBS) waivers.[ii] The intersection of Medicaid and the I/DD service delivery system requires collaboration between state Medicaid and I/DD agencies to address the myriad challenges that individuals face in accessing services, including long waitlists, workforce shortages, and access to behavioral health services. The recently released HCBS Access Rule further underscores the importance of close collaboration, as states must now meet new requirements for I/DD service delivery. This brief highlights the critical role of Medicaid in the I/DD delivery system, including key issues and challenges that individuals and states face. A forthcoming brief will highlight considerations for states as they seek to address these challenges in the context of implementing Access Rule requirements.
I/DD System Serves a Population with a Very Diverse Range of Support Needs.
Although definitions for I/DD can vary, particularly with respect to eligibility for specific programs, there are two common definitions for intellectual and developmental disabilities:[iii]
- Intellectual disabilities, which include conditions that manifest before age 18 and significantly impact intellectual functioning and adaptive behavior; and,
- Developmental disabilities, which include mental and/or physical impairments that manifest before age 22, are likely to continue indefinitely, and substantially limit functioning in areas of major life activities (e.g., learning, mobility, self-care).
The needs of individuals with I/DD extend across the lifespan. [iv] Across all age groups, 60 percent of individuals receiving I/DD services live with family, while 23 percent reside in group settings of varying sizes.[v] Those in institutional settings are typically older or have more intensive service requirements. Regardless of their living arrangement, individuals with I/DD can have a range of support needs, which may co-occur with higher rates of chronic disease and a lower life expectancy compared to the general population. [vi]
Trending Toward Community-Based and Self-Directed Services
The modern I/DD delivery system reflects a broad shift from institutional settings toward community-based services, with the number of people in institutionalized settings decreasing from 194,650 in 1967 to 15,281 in 2021.[vii] While some level of institutional-based services remains, today the I/DD delivery system is largely characterized by the wide range of long-term services and supports (LTSS) and community-based services that are intended to promote individual choice, self-determination, and full integration into the community life, such as:
- Early intervention services focused on infants and children to provide treatment and therapy, such as language and cognitive therapy, during the critical early stages of their development.
- Day programs and vocational services that provide support to individuals in building life and social skills designed to support individual autonomy, participation in community life, and self-sufficiency.
- Supported employment services that help individuals find and engage in competitive integrated employment in the community.
- Residential supports that provide access to services with housing options with varying levels of support.
- Family support services, including respite services and other supports to families and caregivers.
To access these services, individuals with I/DD typically work with a case manager or service coordinator who assists with identifying service needs, develops a person-centered service plan, makes referrals to providers and resources, and monitors service delivery, satisfaction, and the health and safety of the individual. States have also developed self-directed programs whereby individuals with I/DD (or their representatives) direct their own services, typically through either managing a service budget or employing their own providers, further empowering them to make decisions about their own service needs and how they want to be supported.[viii] The types of providers that serve individuals with I/DD are wide ranging, including Direct Support Professionals (DSPs) who are typically non-licensed providers that assist individuals with daily tasks (e.g., personal care, developing skills, transportation), home health aides, behavioral health therapists, nurses, social workers, and others.
Medicaid Plays a Central Role in Funding I/DD Services
Medicaid is a significant funder of services for individuals with disabilities, which represents almost a third of total program spending (more than $208 billion in 2021).[ix] Medicaid is also the largest payer of LTSS for individuals with I/DD.[x] While LTSS for individuals with I/DD includes services delivered in institutional settings (e.g., intermediate care facilities), the strong advocacy for and shift to community-based settings has led to nearly all LTSS being delivered in community-based settings primarily through HCBS waivers. As states have shifted their focus to these community-based services, both LTSS spending and enrollment under HBCS services have increased substantially.[xi] Although service delivery in community settings is substantially cheaper than institutional services, it still represents a significant cost given the complexity of the needs of individuals with I/DD.[xii]
States have the flexibility in defining the scope of services provided through HCBS authorities, which may include community-based services such as support for daily activities (e.g., dressing, eating, managing household finances), supported employment, assistive technology, environmental and vehicle modifications, behavior supports, transportation, skills development, and more.[xiii],[xiv] However, states must comply with minimum requirements established by the Centers for Medicare and Medicaid Services (CMS), including providing access to services using person-centered planning processes and ensuring that settings in which HCBS are provided meet certain characteristics and promote full community inclusion (HCBS Settings Rule). In 2024, CMS released a HCBS Access Rule with new requirements for person-centered service delivery under HCBS authorities, including requirements related to provider payment adequacy and transparency, quality and access reporting, grievance processes, and incident management.[xv] States will continue to evolve their services delivery systems in response to these new federal regulations.
Key Access Challenges for I/DD Delivery Systems
Although the HCBS for individuals with I/DD have significantly expanded over the years, several challenges remain that limit service access, including:
- Waitlists: Most states continue to use 1915c Waiver authority to provide HCBS to people with I/DD. Unlike State Plan Medicaid programs, services provided under Medicaid HCBS waivers are not an entitlement and states can limit the number of people they serve. As such, states have established waitlists that can span thousands of people for many years, limiting access to services and leaving individuals and families without needed supports. Some states have sought to address these issues by establishing separate HCBS waivers or 1915i programs with limited services, which often exclude more costly benefits such as residential services. Other states, like California, have established I/DD services as an entitlement and are using state funding to address gaps in Medicaid financing.
- DSP Workforce Shortages and Training: As with all caregiving systems, including health care more broadly, even after an individual is enrolled in I/DD services, they face challenges in accessing needed services due to widespread DSP workforce shortages. While the scope and severity of workforce challenges vary by state, they are often driven by low wages, lack of benefits, and limited training and advancement opportunities. Several states, such as Ohio and Tennessee, have sought to address these challenges by implementing targeted wage increases and/or linking wage increases to participation in training programs. States are also increasingly paying family caregivers to further extend workforce capacity and leverage their unique understanding of the individuals’ needs.[xvi]
- Linkages to Behavioral Health Systems: Individuals with I/DD experience higher rates of behavioral health conditions than the general population.[xvii] While lack of access to behavioral health services is a challenge that exists across the health system, people with I/DD experience additional barriers seeking mental health and substance use services. Barriers range from discriminatory practices to lack of disability related accommodations and difficulties understanding and navigating the behavioral health system. Additionally, uncoordinated service delivery across health, behavioral health and other support systems, such as long-term services and supports, have real impacts on outcomes for individuals with I/DD.
Looking Ahead
Over the past several decades, significant progress has been made toward expanding access to home and community-based I/DD services and empowering individuals to direct their own lives and supports. Yet, key challenges remain that continue to hinder access to needed services. Given the significant role of Medicaid in the I/DD delivery system, Medicaid and I/DD agencies must actively collaborate with individuals with I/DD, families, providers, and other community partners to assess these gaps, particularly in light of the new HCBS Access Rule, and develop innovative solutions to ensure that individuals with I/DD can receive the services they need and can thrive in their communities.
[i] Sheryl A. Larson et al., In-home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends 2017 (Minneapolis, MN: Research and Training Center on Community Living, Institute on Community Integration, 2020). https://ici-s.umn.edu/files/aCHyYaFjMi/risp_2017.
[ii] https://www.kff.org/medicaid/state-indicator/medicaid-spending-by-enrollment-group/?dataView=0¤tTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D
[iii] https://www.macpac.gov/wp-content/uploads/2021/01/Medicaid-Services-for-People-with-Intellectual-or-Developmental-Disabilities-–-Evolution-of-Addressing-Service-Needs-and-Preferences.pd
[iv] Sheryl A. Larson et al., In-home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends 2017 (Minneapolis, MN: Research and Training Center on Community Living, Institute on Community Integration, 2020). https://ici-s.umn.edu/files/aCHyYaFjMi/risp_2017.
[v] Residential Information Systems Project (2020). Residence Types of People Who Receive LTSS: Living Arrangements of People Served by State IDD Agencies on June 30, 2017. Minneapolis: University of Minnesota, RISP, Research and Training Center on Community Living, Institute on Community Integration. Retrieved from: https://risp.umn.edu
[vi] https://www.healthaffairs.org/content/forefront/advancing-health-equity-people-intellectual-and-developmental-disabilities
[vii] Tanis et al., (2024). State of the States in Intellectual and Developmental Disabilities, University of Kansas
[viii] https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html
[ix] https://www.kff.org/medicaid/state-indicator/medicaid-spending-by-enrollment-group/?dataView=0¤tTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D
[x] https://www.macpac.gov/wp-content/uploads/2021/01/Medicaid-Services-for-People-with-Intellectual-or-Developmental-Disabilities-–-Evolution-of-Addressing-Service-Needs-and-Preferences.pdf
[xi] Larson, S.A>, Eschenbacher, H.J., Taylor, B., Pettingell, S., Sowers, M., Bourne, M.L. (2020). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2017. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
[xii] Sheryl A. Larson et al., In-home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends 2017 (Minneapolis, MN: Research and Training Center on Community Living, Institute on Community Integration, 2020), https://ici-s.umn.edu/files/aCHyYaFjMi/risp_2017.
[xiii] https://www.cms.gov/training-education/partner-outreach-resources/american-indian-alaska-native/ltss-ta-center/information/ltss-models/home-and-community-based-services
[xiv] https://www.kff.org/wp-content/uploads/2013/01/medicaid-s-role-for-people-with-disabilities.pdf
[xv] https://www.federalregister.gov/documents/2024/05/10/2024-08363/medicaid-program-ensuring-access-to-medicaid-services
[xvi] https://www.macpac.gov/wp-content/uploads/2021/01/Medicaid-Services-for-People-with-Intellectual-or-Developmental-Disabilities-–-Evolution-of-Addressing-Service-Needs-and-Preferences.pdf
[xvii] https://hogg.utexas.edu/project/mental-health-idd#:~:text=Depression%20and%20anxiety%20seem%20to,with%20serious%20mental%20health%20conditions.