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We Need Your Voice to Protect People with Parkinson’s in Nursing Homes

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Approximately 90 percent of people with Parkinson’s disease (PD) receive health care coverage through Medicare. A 2015 analysis of Medicare data published in the journal Neurology found that 25 percent of people with PD resided in a long-term care facility (LTCF), such as a nursing home or assisted living property.

The coronavirus pandemic has vividly highlighted deficiencies in America’s long-term care facilities. Infections and deaths from COVID-19 have been disproportionately high among nursing home residents, and it is critical for lawmakers to determine what needs to be done to protect these Americans.

A recent report from the Kaiser Family Foundation (KFF) found that long-term care facilities account for eight percent of all coronavirus cases but more than 40 percent of all COVID-19 deaths, with significantly higher infection and mortality rate among communities of color, specifically Black, Hispanic, American Indian and Alaska Native populations. Black individuals with PD were 34 percent more likely than white individuals to reside in a long-term care facility. And according to a KFF analysis, as of November 24, the cumulative number of long-term care facility COVID-19 resident and staff deaths reached a staggering 100,030.

Just recently, the Advisory Committee on Immunization Practices voted to prioritize the COVID-19 vaccine — once approved and available — to go to health care personnel and residents of long-term care facilities.

This is a good start, but more needs to be done to protect people with PD living in nursing homes. On behalf of the Parkinson’s community, The Michael J. Fox Foundation (MJFF) is urging Congress to support several bills to ensure no cost, regular testing for residents and personnel; supply of personal protective equipment; require data collection and reporting; and expand tele-visitation to ensure residents and their loved ones are able to stay connected. It also requires stakeholder representation to include caregivers, individuals with disabilities, older adults and their advocates to advise on a state’s use and distribution of federal funds directed toward this effort.

MJFF is also calling for greater investments in home and community-based services so that older adults can stay in their homes and communities which will help alleviate some of the problems in long-term care facilities.

Urge Congress to support these bills that impact people and families with Parkinson’s. With just a few clicks, you can send a direct message and share your personal experience with legislators.

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