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. I was immediately paralyzed at 18 from the shoulders down and since then have focused my energy on pursuing a higher education and to be fully-employed.
With the help of Maryland’s disability vocational program called 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.
Unfortunately, Maryland recently ended their waiver nursing services and informed all waiver enrollees to apply for similar nursing services within Maryland’s only long-term Medicaid nursing program called Rare and Expensive Case Management (REM). After applying, I received a denial letter thanks to a loophole in Maryland regulations preventing any working person with a disability enrolled in the State’s Employed Individuals with Disabilities program from also enrolling in REM.
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 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.
After months of advocacy involving the following:
- 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 Maryland 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 with a larger audience all that is at stake for working Marylanders with disabilities; and finally,
- being able to get the bill to the Maryland State House Floor for a final vote 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 three- 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.
Closing Similar Loopholes in Your State – YOUR HELP IS NEEDED! This commonsense legislative win should be implemented in 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 to share why YOUR WORKING FUTURE AND OTHERS LIKE YOU depends on nursing services continuing while working.
Please take a moment to watch this NBC News 4 story covering the bill’s passage in Maryland.
— Joshua Basile, Esq. from Bethesda Maryland
United Spinal Board Member