Overview

People with intellectual and developmental disabilities (I/DD) often need community-based long term supports and services (LTSS) to support their needs and to live as independently as possible. This includes assistance with daily activities, such as getting dressed, taking medication, preparing meals, job coaching, residential supports, and managing money. However, the nation has lacked a comprehensive, proactive national public-private system of delivery. The current system is a patchwork of inadequate funding, with the main source of federal funds provided by the Medicaid program, which requires most people to be impoverished to receive services and has a bias toward institutional settings rather than in the community.

You can learn more about The Arc’s position on community-based long term supports and services by reading our position statement.

Woman with developmental disability in wheelchair being fed by direct support professional in a classroom setting

Why It Matters

A life in the community with the supports necessary to live as independently as possible is critical for people with I/DD.

Medicaid is overwhelmingly the largest source of funding of long term supports and services for persons with disabilities. But currently individuals who want to receive their long term supports and services in community settings are not entitled to home and community-based services (HCBS). States have the option — but are not required — to fund HCBS programs, and the demand greatly outpaces the availability, creating waiting lists and an unknown number of people not even on the radar of the service delivery system.

There are currently over 500,000 people with disabilities on waiting lists for home and community-based long term services and supports. The wait can be as long as 8-10 years in some states. This crisis results in unnecessary, unwanted, and costly institutional care; the desires of people with I/DD to live in and be a part of the community being denied; family members being forced to quit jobs or take on second jobs to help care for their loved one; and having to leave their loved ones unattended. And a well-trained, fairly compensated direct support professional workforce is essential to providing the necessary supports and services to our constituents where they live and work.

Young woman talking with man in wheelchair as they walk together outside

What The Arc Is Doing

In order to meet this national challenge, the federal government must take the lead in developing a coordinated, comprehensive approach to LTSS.

Our Policy Goals
The Arc’s Public Policy Goals include many recommendations on how to expand, modernize, and, where appropriate, maintain national policies that provide individualized supports to better meet the needs of people with I/DD in a person-centered manner. In order to meet this national challenge, the federal government must take the lead in developing a coordinated, comprehensive approach to long-term supports and services.

Our Coalition Work
The CCD LTSS Task Force, which The Arc co-chairs, works with Congress and the Health and Human Services Administration to support the expansion of LTSS and opposes efforts to repeal, weaken, or block implementation of relevant LTSS provisions.

Large orange text that says "Support Staff, Families, Service Providers. Essential for independence. Essential for Community. #WeAreEssential". To the right of the text, there is a photo of a woman in a white sweater placing a mask on her face.

Tell the 117th Congress: Include Disability Community in COVID-19 Relief Bills!

Congress once again passed coronavirus pandemic relief legislation that left out people with disabilities and those who support them! The critical needs of people with disabilities, their families, and the direct support professional (DSP) workforce must be included in the first coronavirus relief bill of the new Congress – we cannot be left behind.

ACT NOW