Today, the President’s Committee for People with Intellectual Disabilities (PCIPD) delivered its latest report, "Advancing Independence and Community Integration for All: Supporting Individuals with Intellectual Disabilities Through High-Quality Home and Community-Based Services (HCBS)," to President Biden. The report focuses on the opportunities, promising practices, innovative strategies, and policy reforms necessary to strengthen and increase the availability of the HCBS that help people with intellectual and developmental disabilities (I/DD) live and fully participate in their communities. The report also describes the barriers to community living faced by people with I/DD.
For more than 50 years, the PCPID has advised the president of the United States and the Secretary of Health and Human Services on policies that impact people with I/DD. The independent committee includes 20 citizen members appointed by the president, along with 13 federal members. ACL provides oversight and support. The committee met last week to hear from members of the public, committee members, scholars, and policy experts about emerging issues — and current challenges — that people with I/DD are facing. The agenda also included updates on several federal initiatives to improve opportunities for people with I/DD and discussions about new federal regulations that protect the rights, health, and safety of people with I/DD, such as the historic update to the U.S. Department of Health and Human Services regulations implementing Section 504 of the Rehabilitation Act. (A recording of the meeting and meeting materials will be available on the PCPID page on ACL’s website next month.)
“The Biden-Harris administration has taken unprecedented steps to support people with disabilities through investments in the country’s care infrastructure and policies to expand access to the services that make community living possible. This report, and its recommendations on how to continue our progress, could not be more important or timely,” said Alison Barkoff, who leads ACL. “This report is particularly meaningful because, for the first time in its history, the majority of PCPID citizen members are people with I/DD, living up to the disability community’s mantra of ‘nothing about us without us.’”
The 2024 report focuses on four issues that are critical to people with I/DD:
- Direct support professionals (DSP) and the DSP labor shortage crisis.
- Employment and how employment of people with I/DD can be supported to advance competitive integrated employment in communities.
- Community living and the additional critical supports to promote independence and community inclusion in the areas of housing, safety, technological supports, and transportation.
- Federal supports and the impact of federal public entitlement programs, like Supplemental Security Income (SSI), Medicaid, and Medicare.
The report is intended to inform federal policy and programs for people with I/DD, in accordance with the PCPID’s mission of promoting policies and initiatives that support independence and lifelong community inclusion.
There are approximately 7.4 million Americans with I/DD. Many need services and supports, often provided by direct support professionals through Medicaid’s HCBS program, to help them live and participate fully in their communities and achieve their own goals. These may include case management, personal care services, accessible transportation, financial and budgeting support, behavioral health supports, and support with obtaining and sustaining employment. Over the last 30 years, the number of people with I/DD who live in institutions or other large congregate settings has decreased significantly, and now the vast majority live with their families, in their own home, or in some other community living arrangement.
For decades, the federal government has played a critical role in the development, establishment, funding, and oversight of HCBS to individuals with disabilities and older adults with chronic conditions.
The full report and an easy-read fact sheet can be found on the ACL PCPID page, along with prior PCPID reports and materials from the committee’s meetings.