THE IMPACT OF ONE MS ACTIVIST: DONNA PARISI TAKES ACTION IN NEW JERSEY

Donna Parisi

For the past seven years, Donna Parisi has been a resident of Preakness Health Care Center in New Jersey. More recently she has become not only a resident, but an advocate for the nursing home’s Medicaid patient community. Donna is a retired teacher with advanced Multiple Sclerosis who relies on a wheelchair and receives essential services through Medicaid.

Donna’s advocacy efforts began with her awareness about New Jersey’s intention to significantly alter its Medicaid program and move nursing home residents into private managed care. Traditionally, states have been reluctant to extend managed care to people with disabilities for various reasons including their complex needs. However, recently, largely due to constrained budgets and a desire to improve delivery and quality of care, some states like New Jersey are considering it. As this is being proposed and is happening, some including the Society want to make sure that the following types of things happen: care is not disrupted; care remain person-centered and based on personal choice; and people will disabilities maintain access to the wide range of services needed for their complex needs and access to qualified providers.

Determined to take action, Donna began investigating and discovered there were no citizen groups in New Jersey dedicated solely to advocating on behalf of nursing home residents. So, Donna stepped in and now tracks the news relating to her nursing home. 

Over the past two years Donna’s advocacy efforts have taken place inside Preakness and outside its doors. How does she do it? By creating momentum and giving her community a voice. Donna has gathered 11,000 electronic signatures on a MoveOn.org petition, she asks any visitor at Preakness to sign the letter, works to enlist support from local politicians and citizens, encourages everyone to call or write President Obama and the U.S. Department of Health and Human Services (HHS) (the federal department that would approve or reject New Jersey’s application) to register their opposition, and attends freeholder meetings. Donna has had a letter to the editor published and was recently featured in an online article in NorthJersey.com. Click here to read the article and learn more about Donna’s awesome advocacy efforts. 

Because of advocacy efforts such as Donna’s, New Jersey has delayed moving its 30,000 Medicaid nursing home residents into managed care. Initially intended to take effect July 1, 2012, New Jersey state officials are now aiming for January 2013 and may roll out the program slowly for a smoother transition. 

The Society applauds Donna for taking an issue that affects her personally and that she is passionate about and doing something about it. She has raised her voice, joined with others, and made a direct impact. That is what activism is all about. Thank you for your hard work as an MS Activist, Donna! Keep up the great work!