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Congress Let an Important Disability Rights Program Expire — Now People Are Trapped In Institutions

Handicapped Parking Spot
Handicapped Parking Spot
Vania Leveille,
Senior Legislative Counsel,
ACLU National Political Advocacy Department
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February 2, 2018

12/12/19 update: Short-term Money Follows the Person funding ends at the end of December. Although key Democrats and Republicans have agreed in principle to a permanent reauthorization of the program, we must make sure it gets over the finish line. Congress must move now to make MFP permanent.

Imagine spending your life under someone else’s control, having to ask for permission each time you wanted to go out to eat, invite someone over, stay out late, or use the internet. For many Americans, this is their reality. Life in institutions and nursing homes often involves severe deprivations of the basic freedoms others take for granted. People with disabilities deserve better.

Over the course of the last several decades, the disability rights movement has fought to expand home and community-based services that assist people with disabilities to transition from institutions to the community. The 1999 US Supreme Court case, Olmstead v. LC, found that holding people in institutions, when they want to live in the community and can medically do so, is unnecessary segregation. Doing so violates both the Americans with Disabilities Act and our constitutional liberties.

The expansion of Medicaid home and community-based services offers people with disabilities a meaningful alternative to institutionalization. Now Congress has an opportunity to expand access to this vital pathway to freedom and independence.

Since 2005, the Money Follows the Person program has been a crucial resource for people with disabilities, supporting the transition of over 75,000 individuals with disabilities into their communities across 44 states. These transitions represent an opportunity for true integration after extended periods within the restrictive and regimented environments of nursing homes and institutions.

Money Follows the Person participants report significant and lasting improvements in quality of life and integration after returning to the community. In addition, their costs to Medicare and Medicaid decrease by approximately 20 percent. This represents an opportunity to improve a beneficiary’s quality of life and freedom of choice, while helping to control long-term Medicaid cost-growth.

Unfortunately, Money Follows the Person expired on Sept. 30, 2016, and states are running out of funding. Sens. Rob Portman (R-Ohio) and Maria Cantwell (D-Wash.) have introduced legislation to reauthorize the program for five years. The EMPOWER Care Act would ensure that states continue to have access to the federal funding they need to transition people into the community.

Last summer, the ACLU joined forces with disability rights advocates to defend the Medicaid program. We recognize that for the disability community it’s not just a health care program — it is the vehicle that allows people to live independently instead of in a nursing home or institution.

Opening the door to community life can be a costly proposition for states, but the federal funding from Money Follows the Person can help bridge that gap and allow people with disabilities to enjoy community living. Congress should act today to reauthorize this program by passing the bi-partisan EMPOWER Care Act. Every person deserves a chance to life in freedom on their own terms.

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