Brief State Options for Improving Care for People with Intellectual and Developmental Disabilities

An estimated eight million people in the United States have an intellectual and/or developmental disability (IDD), according to the Residential Information Systems Project. IDD can include common conditions such as autism, Down syndrome or cerebral palsy; rare conditions such as Williams syndrome; or unspecified diagnoses.

People with IDD often need lifetime supports to live, work and play in their communities. Supports are often provided through a range of state programs and services, including state IDD agencies, Medicaid, the education system, housing programs and workforce development agencies. The systems of care that support people with IDD can be complex, fragmented and challenging for individuals and their families to navigate.

People with IDD experience higher rates of avoidable health disparities than their non-disabled peers, independent from the health differences caused by their primary condition. Additionally, individuals with IDD who are members of certain racial and ethnic groups or who are female are less likely to have access to routine care, according to the Medicaid and CHIP Payment and Access Commission and a literature review.

As states consider options to improve health outcomes for children and adults with IDD, they may consider policies to address co-occurring behavioral or physical health conditions, family caregiving, access to technology, and home- and community-based services waivers.

Co-occurring Behavioral and Physical Health Conditions

People with IDD may have co-occurring behavioral or physical health conditions separate from the underlying condition causing their disability. According to the Medicaid and CHIP Payment and Access Commission, more than 56% of adult Medicaid beneficiaries with IDD also have a behavioral health condition, and 60% have a co-occurring physical health condition.

In addition, the National Council on Disability reports that people with IDD are particularly vulnerable to poor oral health outcomes. When left unaddressed, these co-occurring conditions can contribute to poorer health outcomes.

Untreated co-occurring conditions can also be costly. A Government Accountability Office review of six states found that state Medicaid spending was 13% to 40% higher for beneficiaries with IDD and a co-occurring behavioral health condition than for those without. Similarly, the National Council notes that unaddressed oral health conditions may lead to emergency department visits that could be avoided with better access to preventive care.

States may consider requiring Medicaid to integrate or cover benefits to address co-occurring conditions. For example, Louisiana HB 55 (2022) requires Medicaid to cover dental care for people with IDD and extends Medicaid dental coverage to enrollees who reside in intermediate care facilities for people with developmental disabilities. Texas HB 4533 (2019) established a pilot program for people with IDD to receive an integrated benefit package that includes dental, behavioral health, housing, employment and other services.

Multi-disciplinary clinics may improve access to care and ensure that health care providers have the experience needed to serve the unique needs of people with IDD. For example, in Kentucky, the Lee Specialty Clinic is a multidisciplinary health center dedicated to providing services for people with IDD and offers a broad range of general health care services, dental, psychiatric, vision, podiatry and other specialty care services. The clinic is funded in part by a $750,000 general fund appropriation pursuant to Kentucky HB 6 (2024).

States may also address interagency coordination in serving people with IDD who have other physical or behavioral health needs. Texas requires its Department of Aging and Disability Services to ensure the development of programs for children with a dual diagnosis of intellectual disability and mental illness and requires the department to increase interagency coordination activities. Oregon SB 1557 (2024) requires the state health authority to adopt rules to facilitate cross-agency coordination for children who receive home and community-based services (HCBS).

Family Caregiving

Family caregivers provide significant support to people with IDD. According to the University of Kansas' State of the States in Intellectual and Developmental Disabilities, more than 5.4 million families provide care to a family member with IDD and 72% of individuals with IDD live with a family caregiver. More than one in four family caregivers are 60 years of age or older, highlighting the aging nature of this caregiving population.

Family caregiving can help reduce reliance on institutional care and mitigate effects of direct care workforce shortages but also comes with challenges. Family caregivers may experience increased stress, loss of income and reduced health and quality of life, according to the National Association of State Directors of Developmental Disabilities Services.

While states have a wide range of policy options to support family caregivers, recent efforts have focused on allowing Medicaid to compensate family caregivers for providing care. During the COVID-19 pandemic, states had greater flexibility to pay family caregivers through the Medicaid program. Since then, some states have extended these flexibilities permanently or otherwise expanded paid family caregiving options. Since 2023, at least eight states (Alaska, Connecticut, Illinois, Nevada, North Dakota, Oregon, Tennessee, Virginia) have passed legislation to extend Medicaid payments for family caregivers.

While paying family caregivers can support people with IDD and their families, historically there have been legal limits to ensure payment is appropriate. Paid family caregiving policies may require nuance and stakeholder engagement to consider:

• Who is eligible to be a paid caregiver.
• How to ensure the rights, preferences and needs of the person with IDD.
• How to fairly distribute limited resources and support families with the greatest needs.

Access to Technology

Technology can assist people with IDD with a wide range of activities-including communication, social engagement, navigation, skill development and task completion. Since 2019, states have increasingly invested in state-funded technology solutions and services, according to a May 2024 report from the University of Kansas Life Span Institute and the National Association of State Directors of Developmental Disabilities Services. These technology solutions and services may include remote supports, telehealth, enabling technology, wearables, communication aids / systems, mobile technology and more.

According to the Life Span Institute, Medicaid HCBS waivers are the primary funding authority for technology and technology supports. Vocational rehabilitation and state general fund spending are, respectively, the second and third largest sources of technology funding for people with IDD.

States have explored a range of policy and programmatic strategies to expand the use of assistive and enabling technologies, including task forces, assistive technology loan funds, evaluation and training programs, and telehealth.

States may establish dedicated task forces to address technology for people with disabilities. Ohio established a Technology First Task Force to expand innovative technology solutions and use technology to reduce barriers for people with DD and align policies across state agencies.

States can consider establishing loan funds to assist with purchasing assistive technology. For example, Virginia and West Virginia have authorized assistive technology loan funds for purchasing technology equipment to enable independence and improved quality of life for people with disabilities. Missouri created the Advisory Assistive Technology Council to administer an assistive technology trust fund, administer grant programs and establish interagency coordination.

States may also consider other actions to support assistive technology. Illinois created the Assistive Technology Evaluation and Training Centers Act to provide people with disabilities with comprehensive evaluations, training and hands-on experience with assistive technology prior to purchase. Puerto Rico created an assistive technology program for the purpose of creating a new system for providing assistive technology to people with disabilities. The program includes coordination across agencies and municipalities to establish an assistive technology equipment recycling and loan program, among other activities.

Telehealth can expand access to care and support services for people with IDD, especially those in rural and underserved areas. During the COVID-19 pandemic, 18 states and Washington, D.C., permanently included the use of telehealth for HCBS services for people with IDD, predominately for employment services, day programs and prevocational services. Illinois passed legislation to ensure coverage of telehealth services for people with IDD through the state's HCBS waiver for adults with developmental disabilities.

Home- and Community-Based Services Waiver Waitlists

Medicaid is the single largest source of coverage for people with IDD, with many supports delivered through home- and community-based services (HCBS) waivers. HCBS waivers permit states to provide enhanced, non-institutional benefits to targeted groups, such as children with autism, who may receive services like applied behavioral analysis services to support development and function. Medicaid spending on HCBS waivers for people with IDD has grown since the 1990s and currently accounts for more than 54% of total state and federal Medicaid spending, according to the University of Kansas, State of the States in Intellectual and Developmental Disabilities.

Unlike most Medicaid services, HCBS waivers allow states to limit enrollment, leading to waiting lists that may delay or restrict access to services. Waitlists are often longer and more prevalent for people with IDD and can lead to inconsistent access to community-based care.

States have taken actions to address HCBS waiver waitlists for people with IDD. Kansas established a joint committee to oversee HCBS programs, including waiver waitlists. Colorado passed legislation requiring the development of a strategic plan to ensure access to HCBS services for people with IDD, including waitlist evaluation. When the legislation was originally enacted in 2014, five of the state's HCBS waivers-all of which served people with IDD or their families-had waiting lists. Currently, the only waiver with an active waiting list is for adults with DD.

Maryland took an approach through both the health and tax codes to cover the costs of HCBS services while individuals wait for eligibility. Maryland established a non-lapsing waiting list equity fund to cover community-based services for individuals that are eligible for Medicaid but not currently receiving community-based services. Taxpayers can contribute to the fund through voluntary tax-deductible contributions.

Ohio updated the state's HCBS waiver waitlist process to make it easier to identify individual needs and coordinate services early in the waiting process. Ohio also adopted of a statewide assessment tool to evaluate the need for services and identify current or immediate needs and moved all individuals from the old waitlist to a transitional waitlist for a new assessment conducted by the county board of development disabilities.

Some states have implemented policies to ensure smoother transitions into adulthood, as young adults with IDD may lose access or be put on waiting lists for services previously available to them as children. Florida SB 1758 (2024) established a transition-focused waiver program for young adults with IDD to prevent crisis-based enrollment into adult waiver programs.

Other states are consolidating waivers to streamline administration and access to services. Colorado HB 1003 (2025) merged separate waivers for children with disabilities and pediatric hospice care into a single waiver for children with complex health care needs, which includes palliative care, respite care and other specialized services.

State efforts reflect a range of policy strategies to strengthen coordinated care, support family caregivers, expand access to technology, and address HCBS waiver waitlists. As states work to improve outcomes for people with IDD, they will continue to tailor and explore approaches based on their unique needs, resources and systems of care.