GUEST VIEW: Expiration of disability programs traps people in costly institutions

By VANIA LEVEILLE Senior Legislative Counsel, ACLU & Ari Ne’eman, CEO,

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 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 across 44 states. The program’s 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 approach offers 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 federal funding to help people transition after extended periods within the restrictive environments of nursing homes and institutions.

Opening the door to community life can be a costly proposition for states, but Money Follows the Person can help bridge that gap. Congress should act to reauthorize it by passing the bi-partisan EMPOWER Care Act. Every person deserves a chance to life in freedom on their own terms.

American Civil Liberties Union, 125 Broad Street 18th Floor, New York, NY 10004-2400 United States.