People With Down Syndrome Face Unique COVID-19 Challenges
There’s no shortage of difficult conversations about how COVID-19, a coronavirus that causes serious respiratory infection, affects our world. The virus and its impact have put a strain on families everywhere, whether you’re facing job loss or trying to balance home-schooling your children while working full-time. But the pandemic poses unique challenges for those with disabilities, including Down syndrome.
For people with Down syndrome and their loved ones, COVID-19 may highlight additional stressors about virus risk, accessing critical therapy services, finding emergency caregiver support and discrimination as hospitals roll out health care rationing policies. It can be hard to know where to turn for support when accessing disability services is difficult on even the best day.
In light of COVID-19, here’s what people with Down syndrome and their families should keep in mind during this uncertain time, and where you can find additional resources.
Down Syndrome and COVID-19 Risk
Experts and patients alike keep asking, “Who is most at risk for getting COVID-19?” The answer isn’t straightforward, and the same holds true for people with Down syndrome, according to Dr. Abbie Smith, a pediatrician and mother of a child with Down syndrome.
“Down syndrome alone doesn’t come with an increased risk for severe complications from this virus,” Smith said on an episode of “The Hope Story” podcast. “We have to look at the underlying conditions that are sometimes associated with Down syndrome to help stratify kids and if they are more at risk or not.”
People with Down syndrome who have certain underlying conditions may be at risk for a more serious course of COVID-19, which can cause symptoms such as shortness of breath, fever, cough and digestive issues. Higher risk underlying conditions include:
- Having a hole in the heart that has not been repaired or other heart issues (those who have had a heart repair and are currently doing well don’t seem to be as high-risk)
- Lung or breathing issues, including asthma
- Compromised immune system, or frequent respiratory infections, ear infections or pneumonia
Smith emphasized that having a higher COVID-19 risk doesn’t mean you’re destined to get it. Taking appropriate preventative measures, including physical distancing, frequent hand-washing and limited contact with outside people, can reduce the likelihood of anyone getting COVID-19.
Intellectual Disability Discrimination
As hospitals prepare for the worst with COVID-19, advocates have raised concerns about policies that discriminate against people with disabilities. Alabama, for example, had a provision written into its health care rationing policy that deprioritized people with intellectual disabilities. For people with disabilities and their loved ones, these policies weigh heavily on their mind.
“As a mother to a son with Down syndrome, it’s absolutely horrifying. I’ve had to think about how I would plead my case if it came to that. What would I say?” wrote Mighty contributor Madison Huntsman, adding:
How would I argue that my son deserves to live as much as the other typical 3-year-old down the hall? It all comes back to the same argument for us as advocating parents. We want the same chances, the same opportunities for our kids. We don’t want them held back or pushed aside or put second simply because they aren’t seen as ‘socially useful.’
However, Ashley Helsing, NDSS director of government relations, pointed out that discriminatory policies against people with disabilities in health care are already illegal.
“This whole issue of deprioritization of people with Down syndrome and other disabilities is a big concern we’ve heard from families across the country,” Helsing told The Mighty, adding:
The thing that I think is so frustrating about this issue is it’s illegal already. The laws are already on the books that don’t allow people to discriminate against people with disabilities for medical care, but it’s something that keeps coming up.
— NDSS (@NDSS) April 1, 2020
In response to disability advocates, the Department of Health and Human Services Office for Civil Rights (OCR) issued a bulletin to remind policymakers people with disabilities by law should be given the same consideration as everyone else. Alabama already updated its ventilator priority policy in response.
“HHS is committed to leaving no one behind during an emergency, and this guidance is designed to help health care providers meet that goal,” OCR Director Roger Severino said in the bulletin. “Persons with disabilities … should not be put at the end of the line for health services during emergencies. Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism.”
Access to Supportive Therapy
Like other kids, children with Down syndrome are also transitioning to online or at-home learning as schools close. Many kids with disabilities also rely on therapies to support their growth and development, like physical, occupational and speech therapy. Conducting these services in-person is largely not an option right now. Many parents are facing challenges in getting their children the services they need on top of schooling.
While it may not be an option for every family, Dr. Smith advised seeing if your child’s therapists can switch to telehealth or provide you guidance for working with your child at home. NDSS also compiled a list of educational resources on its COVID-19 resource page, along with a series of free videos from NDSS Inclusive Education Task Force Member Dr. Jamie McClintic you can try at home.
Our team is here to help! If you are struggling with home learning and need support, ???? please reach out to NDSS’ Manager of Inclusive Education Programming at: [email protected] pic.twitter.com/bZjKUuXrtr
— NDSS (@NDSS) April 6, 2020
COVID-19 is also raising anxieties about caregivers for people with Down syndrome. Many families are wondering what happens to their loved one with Down syndrome if parents or other family members get sick.
“There’s already such a need for caregivers outside of the family,” Helsing said. “If you have a family member who is a caregiver, and if they get sick, resources are incredibly limited.”
The following resources for caregivers may be useful to your family:
- NDSS compiled a list of resources for caregivers
- Free or low-cost respite care may be an option to support families, which offers short-term support in the event caregivers get sick. ARCH offers a national respite provider locator tool as well as resources during COVID-19
- The Family Caregiver Alliance also offers a searchable database to help families locate local organizations or public agencies that can offer support in the event of an emergency
COVID-19 and Down Syndrome
If you’re worried about COVID-19 and a loved one with Down syndrome, you’re not alone. Visit the NDSS COVID-19 fact sheet, where the organization has compiled an amazing collection of resources for people with Down syndrome and their families. Helsing said you can also reach out to NDSS directly to report instances of discrimination or the Office of Civil Rights. In this scary time, the community has your back.
“It’s not ‘just’ somebody with disabilities… and the protections that are in place through the Americans With Disabilities Act and all that are to exactly emphasize that point,” said Helsing. “Now is the time where we need to show our true colors and let people with disabilities know that their lives do matter.”
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