I was supposed to be dead by age two, instead I am 36 years old, hold a master’s from East Carolina, and work a good full-time job as a business analyst. I was born with a developmental disability called Spinal Muscular Atrophy, a muscle-wasting genetic condition where I need assistance with nearly all aspects of daily life and use a power wheelchair.
You might remember “Jerry’s Kids” from the old MDA telethons in the 90s; that’s us. I am alive and thriving today because in addition to dedicated parents, I receive world-class medical care, science fiction-level cutting-edge treatments, and long-term care services, all, from Medicaid. Yet despite coming this far, I and nearly 19,000 of my brothers and sisters in the broader developmental disability community are staring down an uncertain and terrifying future where our ability to lead productive lives is threatened.
On March 26, over 200 developmental disability advocates, from the coast to the Helene ravaged mountains, made the difficult journey to the General Assembly to share their stories in a listening session hosted by the bipartisan Intellectual and Developmental Disability Caucus. The demand was clear: Innovations waiver slots, and higher pay for the workforce that sustains them. Seventeen speakers, including myself, intimately shared our successes and fears regarding our future.
The NC Medicaid Innovations waiver program is a package of long-term care home and community-based services that allows us to live and work in OUR home, as an alternative to an institution akin to a nursing home. The waiver enables independence and the ability to contribute. Unfortunately, there is a 10- to 20-year waiting list that is approaching 19,000 waiting, one of whom is me. I have some services, but two-thirds of care is still done by my parents in their 70s.
Over the past decade, per a Duke study commissioned by the North Carolina Council on Developmental Disabilities, which I chair, only 2,000 new waiver slots have been funded, while over 10,000 families, desperate for services, have been added to the waiting list. Individuals have died, waiting, as shared at the nearly two-hour listening session, which had legislators in tears through most of it. Waivers are the difference between independence and dependence.
Over 14,000 people with developmental disabilities currently have an Innovations waiver slot, but pay for direct-care workers, the backbone of the program, is woefully inadequate to attract a sufficient workforce. Pay for Innovations direct-care workers currently averages $15 an hour with no health-care benefits, despite these being health care workers. We are losing passionate, dedicated, and skilled professionals to fast food and retail jobs.
Without waivers and a sufficient workforce, those with developmental disabilities face the horrifying prospect of institutionalization. I have been on the waiting list for four years, I expect to be on the waiting list for at least another 10. My life, and that of 18,770 others, is a race between how long we can wait and how long we will have to wait. Losing that race means going into a nursing home, taken away from friends, community, jobs, and lives, assuming a bed is available; if not, it means going to the ER to be boarded. The expense to the state of an individual losing the race for a waiver slot is enormous.
For most people with developmental disabilities needing long-term support services, properly funded Innovations waivers are the most cost-effective and efficient form of care available, cheaper than the equivalent institution and orders of magnitude cheaper than ER boarding. It means delivering high quality care in the community with spectacular outcomes. Innovations is also a jobs program; 10,000 new waivers would mean 13,000 jobs, per Senate Bill 246, introduced by state Sens. Tim Moffitt, R-Henderson; and Lisa Grafstein, D-Wake.
The potential for federal cuts to Medicaid would devastate the developmental disability community. Most of the services people with developmental disabilities rely on, such as Innovations and prescription drugs, are classified as “optional services,” and therefore prime targets for cuts. They are not optional for those with developmental disabilities; they are the difference between thriving and dying.
