By the National Association of Councils on Developmental Disabilities
Priorities to bridge aging and disability networks to support health aging for adults with intellectual and developmental disabilities (IDD) and family caregivers. Source: Bridging Aging and Disability Network, NACDD.
More adults with intellectual and developmental disabilities (IDD) are aging and living longer than ever before. At the same time, many rely on family caregivers, who are also growing older. While both aging and disability systems serve adults with IDD and family caregivers, these systems have historically operated separately. This separation can make it harder for older adults with IDD and aging caregivers to plan for caregiver transitions, dementia supports, and long-term services and supports (LTSS), and other aging-related needs. The Bridging Aging and Disability Networks (BADN) initiative, led by the National Association of Councils on Developmental Disabilities (NACDD), helps aging and disability systems work together so older adults with IDD and their families can more easily find coordinated services and support.1
As a part of the BADN initiative, the Community Living Policy Center within Brandeis University partnered with NACDD to publish a journal article that identifies priorities and best practices for systems to improve the aging process for adults with IDD and their family caregivers:
- Future planning: Aging and disability systems should provide accessible, person-centered future-planning resources and support families in developing plans for changes in caregiving, housing, finances, decision-making, and other needs before a transition or crisis occurs.
- Person-centered planning: Aging and disability systems should incorporate aging and future-planning considerations into existing person-centered planning processes, such as living arrangements, decision-making, and long-term supports so that these needs are addressed proactively.
- Information and referral: Aging and disability systems should improve information, referral, and navigation support to help people with IDD and their families understand eligibility requirements and connect to available LTSS and Medicaid Home- and Community-Based Services.
- Family caregiver support: Aging and disability networks should work together to provide caregiver education, navigation, peer support, respite, and other services that meet the needs of aging family caregivers so that they feel more supported and prepared in their role.
- Supported decision-making: States should expand education and resources to providers, disability rights lawyers, and caregivers on supported decision-making and less restrictive alternatives to guardianship to help adults with IDD maintain autonomy over decisions as they age.
- Aging-related supports: Aging and disability systems should provide specialized training to aging service providers and adapt existing services to make aging-related supports more inclusive of adults with IDD.
- Emergency and disaster planning: States should develop coordinated emergency plans across aging and disability systems to ensure that adults with IDD and their caregivers receive appropriate support during emergencies.
- Cross-system collaboration: States should promote collaboration among aging and disability agencies, providers, and people with IDD to improve coordination and create more comprehensive supports for aging adults with IDD.
Several of these priorities are reflected in the work of the BADN initiative, which supports state teams that include aging and disability agencies, self-advocates with IDD, family members, and community partners. Together, these teams create state-specific work plans that strengthen collaboration and improve supports for aging adults with IDD and their caregivers. Their work has already produced several promising practices that other states and partners can learn from and adapt.
As more adults with IDD and family caregivers grow older, collaboration across aging and disability systems is more important than ever. Explore the BADN initiative to discover practical tools, emerging practices, and state-led strategies that can help your organization better support aging adults with IDD and their families.
1In Fiscal Year 2022, the National Association of Councils on Developmental Disabilities (NACDD) was awarded a five-year cooperative agreement made available by the Administration for Community Living at the United States Department of Health and Human Services to support improved resource and service coordination among aging and disability systems.