We Say We’re for Everybody, But Don’t Show it When It Comes to Health
Why the Medically Underserved Population designation is so important.
By: Shawn Aleong, BA Candidate, Temple University and Vanessa Rastović, Esq.
Pictured: Shawn Aleong, BA Candidate, Temple University and Vanessa Rastović, Esq.
Shawn Aleong is serious about Universal Inclusion. He’s a fierce self-advocate for equal rights for people of color with disabilities. A BA Candidate at Temple University in his hometown of Philadelphia and an aspiring lawyer, Shawn knows where he’s going in life and what he wants to accomplish. One thing that Shawn advocates is for people with intellectual and developmental disabilities and autism to be designated as a Medically Underserved Population, or MUP. Here’s why, in his own words:
Some people in America struggle to get adequate and inclusive opportunities to participate in their communities. That’s not fair. We’re still separating people in ways that aren’t always easy to see. Some students go to “special” education classes or live away from their homes and families in institutional settings or care homes because their families don’t have enough support to keep them at home, where they belong. Because of these separations, non-disabled people may hold misconceptions about individuals with intellectual and developmental disabilities (IDD), often due to a lack of understanding or exposure. One common misconception is that individuals with IDD are incapable or less intelligent, which is simply not true. Another misconception is that they always depend on others for everything, overlooking their abilities and potential for independence with the right support.
Additionally, there's a tendency to generalize their capabilities or goals, ignoring the diversity within the IDD community. Lastly, some may assume that individuals with IDD are always happy or childlike, disregarding the range of emotions and experiences they have. Addressing these misconceptions requires education, empathy, and recognition of the individuality and dignity of each person with IDD. We’re all a product of this narrative, so community inclusion is important, especially in health care. When it comes to health, some people are still being left behind, and that’s not fair to anyone.
“America needs to designate people with disabilities, including those with IDD and autism, as a Medically Underserved Population because they are.”
A Medically Underserved Population is a group of people who struggle to get adequate and inclusive healthcare. This could be because they don't have enough money, there aren't enough doctors or hospitals nearby, or they face other barriers like language or cultural differences. Some health professionals may have preconceptions about people with disabilities. They may believe they don’t have the knowledge or skills to provide inclusive care or have concerns about behaviors or communication. Some health professionals may attribute health issues to a person’s disability, called diagnostic overshadowing. Because of these challenges, they often don't get the same quality of healthcare as others, leading to worse health outcomes.
“Happiness and health are for all, but how can we say that when people with disabilities, especially people of color with disabilities, don’t have the same access? Because their status in society is often undervalued.”
Equal access to health care means you can get an appointment when needed. Many medically underserved people, including people with IDD, are forced to go to the Emergency Room to get health care because many health professionals don’t participate in public insurance or accept patients with disabilities into their practices. Equal access means having support available when you need it and that you will be treated equally. It means affordable medications and health insurance to help pay doctor’s bills.
Many people with disabilities have problems with a doctor understanding their disabilities or being taken seriously when they say they have a problem—or having the necessary and accessible equipment to make health care inclusive. All people need to be treated in a dignified way.
Language and communication barriers are common. Does the health care provider have staff who can communicate in sign language or understand communication devices? Those are all parts of inclusive health care.
Photography By: Ryan S. Brandenberg. Pictured: Shawn Aleong at Owls on the Hill, an annual tradition in which Temple students travel to the Pennsylvania State Capitol in Harrisburg.
For people of color, even without a disability, you still have a lot of discrimination that goes on. Many people are denied access to the medication that they need or have to wait hours and hours in the Emergency Room just to get help from a doctor. When it comes to discrimination against people of color in the medical field, it’s not as up-to-date as it should be. As a nation, we love to say that we are for everyone, yet we don’t show that when it comes to health. And honestly, America sometimes shows how much they care about a person by how they treat them, especially when it comes to something as basic as health care.
The Medically Underserved Population designation is important for people with disabilities because it’s a tool that’s already available to help right some of the wrongs that have happened in the past. Some of those narratives still exist throughout our society today. The MUP designation is an important part of Home and Community-Based Services. If a person with a disability can’t get physical, behavioral, and dental health care in their community, are they really a part of that community?
I have a mom who has always fought for me so that I could have the best doctors, the best dentist, and the best everything. Every mother wants the best for her child. Where I think it’s different is that when you grow up in a household, you tend to get better treatment than someone in an institution.
I remember I saw a friend who lived in a group home, and her health was deteriorating, not because of her own doing but because of the group home. HCBS is health care, and health care is HCBS.
“Let us not forget how doctors, nurses, and staff used to experiment with people with disabilities in the medical field in the 1900s and 1950s and even today. We have to make sure that we train doctors, nurses, and staff to treat those who have disabilities with dignity.”
We have a tool to improve health and access to inclusive care. The Medically Underserved Population designation for people with disabilities would increase funding for primary health care, something that can be difficult to find if you have public insurance or a disability. An MUP would increase funding to recruit and train more health professionals, more providers who have learned how to practice inclusive care is a benefit for everyone—with or without a disability.
MUP also helps health professionals pay for their education. When health professionals care for everyone, especially people with disabilities, they perform a valuable service to their whole community. That deserves to be recognized and needs to be made easier to do. The MUP increases research funding to learn how to optimize our health.
Let us be the America we say we are for everyone.
Please join Shawn for a roundtable discussion on the importance of the MUP designation for people experiencing disabilities at the US Capitol on Tuesday, July 23rd from 12–2 at Rayburn House Office Building with the following panelists:
Representative Seth Moulton, 6th District of Massachusetts;
Dr. Adiaha Spinks-Franklin, MD of the Society for Developmental and Behavioral Pediatrics;
Dr. Mai Pham, MD of the Institute for Exceptional Care;
Dr. Steven Perlman, DDS of the American Academy of Developmental Medicine and Dentistry, Special Olympics, and Project Accessible Oral Health,
Jed Soliman, Esq. of the National Council on Disability
About the author
Shawn Aleong is a talented and ambitious African-American male with cerebral palsy, a human rights, disability, and civil rights advocate, and a legal studies and finance student at the Fox School of Business, pursuing a business law and finance degree. As a member of The National Association for the Advancement of Colored People (NAACP), Shawn supports his passion for advocacy by participating in the Advisory Board for the Institute on Disabilities at Temple. He is a citizen member of President Biden’s Committee for People with Intellectual Disabilities (PCPID) and served in the Philadelphia Mayor’s Office as a commissioner for the Police Advisory Commission. Shawn strongly advocates for underserved minority populations and individuals with disabilities. He has spoken on the importance of the ABLE Act, Medicaid, and outside of the Supreme Court for Senator Casey to celebrate the 25th Anniversary of the Americans with Disabilities Act.