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Administration on Intellectual and Developmental Disabilities (AIDD)

Bridging Aging and Developmental Disabilities Service Networks

Report Produced by the Institute on Disability and Human Development, University of Illinois at Chicago

March 15, 2012

Elderly mother and disabled daughterBridging Aging and Developmental Disabilities Service Networks identifies policy and service delivery issues pertaining to older adults with developmental disabilities and their families and recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks. Key policy initiatives addressed include the Aging and Disability Resource Centers, the Lifespan Respite Act, the National Alzheimer’s Project Act, and the Patient Protection and Affordable Care Act.


Executive Summary

Background

People with developmental disabilities are aging at unprecedented rates and have unique health and service needs. Adults with developmental disabilities have a higher risk of developing chronic health conditions at younger ages than other adults, due to the confluence of biological factors related to syndromes and associated disabilities. They also may face poor access to adequate health care, as well as lifestyle and environmental issues. These unique service needs of this population pose new challenges for existing service networks. Traditionally the aging and developmental disabilities services systems have run on parallel tracks. Large-scale legislative changes that target long-term care services and supports will require greater communication and coordination between the two systems. In this time of great transformation, it is critical for the two systems to work together as their populations face similar needs including managed long-term, integrated care for people who are dually eligible for Medicaid and Medicare, and rebalancing initiatives that promote community living.

Purpose and Objectives

By assessing key issues this population faces, and the extent to which they are being addressed, this project identifies policy and service delivery issues pertaining to adults aging with developmental disabilities and their families. This initiative includes discussion of the differential and shared philosophies and values underpinning the aging and developmental disability networks. It also provides information for the Administration on Developmental Disabilities (ADD) and other federal agencies on being catalysts for promoting progressive policies across aging and disability populations. And finally this report recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks.

Policy Initiatives

This report discusses recent major policy developments that pertain to the service needs of people with developmental disabilities and their families. Widespread efforts to bridge the aging and developmental disabilities (DD) service systems began in the 1980s in response to the large numbers of adults with developmental disabilities who were surviving into old age, including many who were still living with their parents. States also began to establish managed care plans for health care and long term supports for people with developmental disabilities and other Medicaid beneficiaries to contain escalating program costs.

More recently, passage of the Lifespan Respite Care Act (P.L. 109-442) and National Alzheimer’s Project Act (NAPA, P.L. 111-375) have provided the opportunity for grantees to further involve and incorporate people with developmental disabilities into their services and supports. Additionally, several provisions of the Patient Protection and Affordable Care Act (ACA, P.L. 111-148) will have a positive impact on health care for people with developmental disabilities.

Launched in 2003, the Aging and Disability Resource Center (ADRC) initiative is a joint effort of the Administration on Aging (AoA) and the Centers for Medicare and Medicaid Services (CMS). Aging and Disability Resource Centers bridge the aging and disabilities service networks by establishing local “one-stop shops” that streamline access to long-term services and supports for older persons and younger people with disabilities. Although the ADRC program has been operating for eight years, only a handful of states targeted people with developmental disabilities as the primary disability group their ADRCs serve. Most states chose to serve people with physical disabilities through their ADRCs. AoA is positioning ADRCs to play a key role in linking people to the expanded long-term supports and services that will be provided under the Affordable Care Act. This report examines the facilitators and barriers to bridging the aging and developmental disabilities service networks and provides recommendations for improving access to long-terms services and supports for people with developmental disabilities and their families.

Recommendations

This time of dramatic policy change provides an opening for agencies to improve efficiency and coordination to better serve people with developmental disabilities and their families. The present project recommends four overarching goals: 1) raise the visibility of developmental disabilities concerns in policy reforms, 2) improve program implementation of health and long-term support initiatives to better address needs of persons with developmental disabilities, 3) develop a workforce with knowledge and skills to address disability and aging issues, and 4) better understand the age-related needs and best practices in meeting those needs through research and evaluation.

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Last Modified: 9/19/2013