An Open Letter to the President-Elect: Please Don't Forget Persons with Disabilities
Florida Self-Advocacy Central extends a warm welcome to its newest writer, Jason Hahr.
Dear President-Elect Trump,
I would like to congratulate you on a hard-fought victory. I am aware at this time that you are receiving many letters. So, I would like to thank you for taking the time to read mine.
My name is Jason Hahr.
I am 30 years old and have cerebral palsy. Due to my cerebral palsy I am extremely physically limited. I need help with everything, from bathing, getting in and out of my wheelchair, to writing a letter. Despite my physical limitations I have two bachelor’s degrees and a master’s in education. I have had a lifelong passion for advocacy on behalf of persons with disabilities. Currently, I am a part of Florida Self-Advocates Network’D, or FL SAND. FL SAND is a statewide association of people with developmental disabilities who advocate for themselves and on behalf of all persons with disabilities in Florida. Along with promoting improvement in the local communities that comprise the network, the group is heavily involved in promoting legislation statewide.
Throughout the election cycle many issues were discussed by your campaign, including immigration, education reform, and national defense. One issue that was not mentioned formally by your campaign was how your administration would address persons with developmental disabilities. Because of this, many members of the disability community feel as if they were either disrespected or ignored. I will use the rest of this letter to address some important issues that concern the disability community.
During your campaign, you placed great emphasis on jobs and employing Americans. Specifically, you mentioned your administration would enact policies that would reduce unemployment and improve the lives of working Americans. Disability unemployment and underemployment are problems that need to be addressed in the United States as well. Many persons with disabilities live in poverty, perhaps due to outdated employment practices such the subminimum wage for persons with disabilities. Currently, with the exception of four states, certified shelter workshops can pay persons with disabilities less than the federal minimum wage. To close a loophole in the 1938 Fair Labor Standards Act that allows this practice, there is currently a bill in the house (H.R. 188), the proposed “Transitioning to Integrated and Meaningful Employment Act,” or TIME Act. Ending shelter shops and the sub-minimum wage is not the only problem that persons with disabilities face in regard to employment.
Another issue facing persons with disabilities concerns choosing work over quality of life. If an individual like me seeks employment they face a dilemma. We can seek employment in an attempt to support ourselves and become contributing members of society but lose medical and financial benefits, or choose not to seek employment for fear of losing these essential benefits, thus forever remaining on the system. Currently, one presumed solution to the dilemma is a government program known as “Ticket to Work.” Under this program individuals have a nine-month grace period in which they can earn unlimited income at a job while maintaining all of their benefits including Social Security and supplemental income; the theory behind the program being that the employee will earn income sufficient to support him or herself at the new job and enroll in the employer’s health insurance plan. When the nine-month period ends their disability check gets reduced and Medicaid/Medicare is dropped, depending on how much money they earn. In theory, this seems like a sound idea; in practice, however, it doesn’t work for everyone. The primary obstacle I’d face were I to go to work full time would be the loss of Medicaid. The extensive services I need to function are typically not available or are cost-prohibitive in private insurance plans. Under the current system Mr. Trump, although I desperately want to work full time, I simply cannot afford to.
Most people, even those with disabilities, understand that entitlement programs need to be reformed. Oftentimes, however, when Social Security, Medicare, and Medicaid reform are discussed, the conversation focuses on reductions. While this may be merited in some cases, an aspect of the conversation that deserves more focus is systemic change, not just to prevent fraud and abuse, but to more effectively benefit those who are truly reliant on services to live independently and contribute to society. I’m aware that you have great business acumen. You have shown the world that throughout your career. As a young American, I want to contribute to help make America great again, as well, but I’m not sure how to do that in the current system. Would you consider using this acumen to work with Congress to find fair and viable solutions to the problems that impact so many Americans with disabilities?
Mr. Trump, I am also aware that the President cannot act on his or her own to correct all of these problems. I also know the above problems are not the only ones that concern people with disabilities. I am not asking for, nor am I expecting, overnight solutions. But I do wonder if it were possible to have an open and honest discussion with a part of the community of Americans that often feel overlooked? May I suggest looking to appoint people who have worked in the disability community to more government positions? Perhaps, you could also invite a few persons with disabilities to Trump Tower or the White House after the Inauguration to discuss the issues we face and the problems with the bureaucracies created to address them. Would you please take a close look at and strongly consider supporting and signing the TIME Act if it arrives on your desk in the Oval Office? I know there is an HHS department on disabilities and while this is a fine start, the more voices that are involved in the conversation the better.
The morning after the election you said you would bring all people together. Please don’t forget people with disabilities. By no means do I have all the solutions to a great and complex problem, I am simply looking to spark the conversation.
A Proud American