Overview
People with intellectual and developmental disabilities (IDD) 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.
Why It Matters
A life in the community with the supports necessary to live as independently as possible is critical for people with IDD.
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 IDD 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.
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 IDD 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.
Care Can’t Wait. Sign the Petition!
Support for people with disabilities and older adults who need assistance with everyday activities can be unpredictable, unaffordable, and often unavailable. Too many families are at a breaking point because of severe underfunding in care programs—and it’s time for a long-overdue investment in these supports and services!
How You Can Help
There are many ways to advocate with and support The Arc’s grassroots movement.
Follow a manual added link
DONATE
Help strengthen our policy advocacy efforts to protect critical programs.
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
