App.com recently ran a story about a college student with SMA at Georgetown University. Anna Landre graduated from Freehold Township High School, in New Jersey, as valedictorian in 2017. She is currently thriving as a college undergraduate and was recently offered a summer internship.
The problem: Landre may not be able to accept this internship because it would interfere with her medical benefits.
In Landre’s home state, the New Jersey Division of Disability Services would reduce her allotted caregiver hours significantly if she were to take the internship. The $14-an-hour salary she would receive exceeds the amount she is allowed to make by her government services, so receiving it would prevent her from keeping the personal care assistance that she needs.
Sadly, this kind of backward bureaucracy is a reality that far too many people with disabilities are familiar with, myself included. When I try to explain to people why I haven’t moved out of my parent’s house yet, I explain how the system works and how I’d be responsible for covering not only my living expenses but also the many hours of caregiving services that aren’t provided by the government.
This App.com article perfectly sums up what Landre’s post-college life might look like: “Let’s say Landre earns a job in D.C. paying $50,000 per year after graduation — not making bank, but clearly above the poverty line. Based on WorkAbility rules the aide would cost her $52,000 out of pocket, putting her in an immediate hole.”
Whenever I explain this to people, they are shocked, angry, and confused as to why this kind of systematic oppression is still in effect in 2018. I’m not mincing words here, because these policies are clearly based on this message: There are many people today (particularly, those in power) who reject the notion that people with disabilities want to work. These policies are blatantly oppressive, and it’s time for a change.
A few years ago, I was at an SMA conference, attending a lecture by a successful entrepreneur who also had SMA Type 2. He worked full-time, lived independently, and owned and operated several businesses. As a college student eager to learn from successful SMA adults, I listened intently to hear how this man managed a career and an independent lifestyle.
The catch was that he worked seven days a week, year-round. To fulfill his goals, he received no government assistance and had to work constantly to afford caregiving services.
I was distraught. I realized then that under the current system, I have to choose what I really want and what I’m willing to sacrifice. I knew that working constantly wouldn’t fulfill me. I saw no point in being independent if I didn’t have a life outside of work. Still, I spent a lot of time wondering about my future and how life after college would play out.
I’m fortunate enough to be where I am today. I work full-time and still retain Medicaid, and I have a great caregiver who’s stuck with me for four years now. Still, I cover a lot of his hours out of my pocket. If I were to move out, covering all of those financial issues would be nothing short of a logistical nightmare.
Ever since the passing of Section 504 of the U.S. Rehabilitation Act of 1973, there has been tremendous progress in regards to the rights of citizens with disabilities. More people with disabilities are working and living independently. But we still have a long way to go.
I know an SMA author who’s married and has two grown children, yet he still receives financial support from his stepfather to help cover caregiving costs. I know others with college degrees and endless qualifications who are still unable to find employment.
My message to our politicians and our society is simple: Many of us with disabilities want to work, want to contribute, and we have the capability. All we need is some assistance. Our abilities and our needs are not mutually exclusive, so stop pretending they are.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.