Page 24 - Mobility Management, January/February 2021

ATP Series
Aging with Down Syndrome
often structural, are present in about half of all people with Down syndrome. The lungs of children with Down syndrome don’t develop as fully as the lungs of typical children. And craniofa- cial features, such as the flattened mid-face, can raise the risk of or exacerbate respiratory issues, including chronic aspiration, frequent and serious respiratory infections, and sleep apnea.
Low muscle tone, excessive or poor flexibility, and vestibular issues can cause balance problems, according to Children’s Hospital of Philadelphia. And the Down’s Syndrome Association says that while excessive weight gain isn’t inevitable for people with Down syndrome, factors such as low muscle tone, lower metabolic rates, and less physical activity and stamina can raise the risk for obesity.
People with Down syndrome typically have mild to moderate intellectual disabilities, NDSS says. And they are at higher risk for dementia, especially Alzheimer’s, which tends to present in people with Down syndrome at earlier ages versus the general population.
MEET CHARLOTTE WOODWARD,
SUPER ADVOCATE Charlotte Woodward, 30, is the Community Outreach Associate for NDSS. She has Down syndrome.
“A typical workday prior to
the COVID pandemic was I
would get up and have break-
fast and get ready for work,”
Woodward told Mobility
Management. “I would then
commute to work by a car
service into the District of Columbia and get to work at the National Down Syndrome Society’s office, where I take on many projects to advance NDSS’s mission.
Charlotte Woodward
CHARLOTTE WOODWARD: Advocate, Student, Media Star
Charlotte Woodward is a busy woman. She is in her third year as Community
Outreach Advocate for the National Down Syndrome Society (NDSS) while working toward a degree in sociology at George Mason University in Fairfax, Va.
“I would say my advocacy work with NDSS and other disability organizations would be my favorite and most important
activity, but family ties and friendship ties are also important to me,” Woodward told Mobility Management. “My number one personal goal is to develop a fitness routine, and post pandemic I want to get back to traveling — safely, of course — and to play sports competitively. Maybe basketball and baseball?”
But Woodward can add another achievement to her résumé: media star.
TikTok Video Goes Viral
An August 2020 video posted by the NDSS to TikTok went viral last summer, and through mid January it had tallied more than 1.1 million likes. In the video, called, “Things About Having Down Syndrome that Don’t Make Sense,” Woodward explained she’d lose her health insurance
if she got married, and noted that people with Down syndrome who are employed can be paid less than minimum wage.
“I can be denied an organ transplant just because someone thinks less of me,” Woodward added on TikTok.
Indeed, that topic — Woodward, now 30, had a heart transplant in her early 20s — was the subject of a January story in Forbes and a September 2020 story on Today.
The Forbes piece pointed out that people with Down syndrome have tradi- tionally been denied lifesaving organ transplants: They’re defined as ineligible because of developmental or intellectual disabilities. Even now, in more than half
of American states it’s legal for decision makers to cite an intellectual or develop- mental disability when explaining why a patient doesn’t qualify for organ transplant.
A Bill Named After Charlotte
In December, Rep. Jaime Herrera Beutler (R-Wash.) and Rep. Katie Porter (D-Calif.) introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act, which would prevent
a person’s disability from being the sole reason to deny a person an organ transplant.
In the bill’s announcement, Porter
said, “Too often, discrimination stops Americans with disabilities from getting the lifesaving organ transplants they need. I’m proud to partner with Congresswoman Herrera Beutler on critical legislation that bars healthcare providers from denying necessary transplants solely because an individual has a disability. These protec- tions for Americans with disabilities and their families will save lives.”
Since the bill did not pass during the last session of Congress, it will need to be reintroduced this year.
The NDSS has already said it will be mobilizing to build support for the new bill.
And post-pandemic, when face-to-face meetings can be put back onto calendars, Woodward said she plans to resume her regular visits with legislators and policy makers. “Yes,” she said, “I sure hope so.” m
24 JANUARY-FEBRUARY 2021 | MOBILITY MANAGEMENT
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CHARLOTTE WOODWARD TESTIFIES: COURTESY NDSS