How to self advocate and push towards policy change

Posted by Reeve Staff in Daily Dose on May 10, 2018 # Advocacy and Policy

by Joshua Basile, Esq. from Bethesda, Maryland

No person with a significant disability should ever have to choose between working and nursing care.

In 2004, my life was literally flipped upside down when a wave on a family beach vacation slammed me headfirst against the ocean floor. My 18-year-old body was immediately paralyzed from the shoulders down. Upon returning home from the hospital, I refocused my energy towards physical therapy and pursuing a higher education in order to one day gain employment.

With the help of Maryland’s disability vocational program,Division of Rehabilitative Services, I went on to graduate from the University of Maryland College Park and then graduated magna cum laude from law school. I am now a medical malpractice attorney helping families in Maryland and Washington, DC.

Maryland’s only long-term Medicaid program providing community-based nursing services is called Rare and Expensive Case Management (REM). Unfortunately, a loophole in Maryland regulations prevents any working Marylander with a disability enrolled in the State’s Employed Individuals with Disabilities program (EID) from also enrolling in REM.

The EID program, also known as a Medicaid buy-in program which exists in most states, allows a working person with a disability to earn a salary above Maryland’s $4,440 per year Medicaid low income requirement. The EID program allows Medicaid enrollees with significant disabilities to remain eligible for Medicaid benefits while earning up to $73,860 per year.

This loophole blockage would force me and others with significant disabilities to choose between work and nursing care. As a quadriplegic with no movement in my arms, hands or wrists, I will always choose nursing care over work in order to survive. Not satisfied with this future choice, I reached out to my state level elected officials to put forward a Maryland bill that would allow working persons with rare and expensive disabilities to access REM long-term nursing services.

I took the following steps to fix this issue:

  • researching the problem and brainstorming a fix
  • drafting a bill and securing legislative sponsors/cosponsors within the Maryland Senate and in the House of Delegates
  • setting up in-person meetings with 21 Maryland Delegates and/or their staff members,
  • setting up in-person meetings with 9 Maryland Senators and/or their staff members,
  • testifying at two committee hearings in front of both the Maryland Senate and House of Delegates,
  • working behind closed doors to urge state agencies and officials to fix the problem or work with us by amending the proposed bill,
  • with only days remaining to garner last-minute support and to put pressure on the State, we pursued local TV media in order to share the loophole with a larger audience and all that is at stake for working Marylanders with disabilities, and finally
  • after satisfying all committee votes and procedural rules, the bill was voted upon on the Maryland State House Floor on the final day of the Maryland 2018 legislative session.

After tackling each one of these steps, I am happy to report that the bill OFFICIALLY PASSED creating a 3 year demonstration project for the state to study inclusion of working persons with disabilities within the REM program and to hopefully come up with a future long-term fix during that time.

Closing Similar Loopholes in Your State – YOUR HELP IS NEEDED! This commonsense legislative win should be implemented within every state across the country. It is important that YOU share this story with YOUR STATE LEVEL ELECTED OFFICIALS and ask for them to bring forward a similar bill to allow all working persons with disabilities that require nursing services to have access to this vital care. YOU will need to advocate side-by-side with them in order to share why YOUR WORKING FUTURE AND OTHERS LIKE YOU depend on nursing services continuing while working.

Please take a moment to watch this NBC new story covering the bill’s passage in Maryland

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.