Story
The Down Syndrome Center of Western Pennsylvania provides specialized medical care and support for individuals with Down syndrome and their families. We are only able to continue to provide these services thanks to the generosity of our donors.
The families seen by the Center may not have to pay anything for their children's care, but that does not mean that all the services they receive at the Center are covered by insurance. Philanthropy is the unseen partner that makes all the difference.
Regardless of a family's health insurance or coverage under Medical Assistance, here is what the Down Syndrome Center would look like WITHOUT the philanthropic support of individuals, organizations and foundations:
- Pediatric and adult Care Coordinators would not exist, which means families would not have an experienced liaison to connect them with community resources and navigate insurance, school, and legal considerations throughout their children's lives.
- There would not be an adult Down syndrome clinic in Western PA.
- Free, requested prenatal visits would not happen (at any price).
- Wait times for pediatric appointments would be six months or more.
- Visit length would be 15 minutes instead of 60 minutes.
- Visits would not include Care Coordinator.
- The Nurse who families see in clinic may not be the same each time and would not have experience with Down syndrome.
- There would be no dedicated Nurse with expertise in caring for children with Down syndrome to answer questions between visits.
- We would not be able to employ an adult with Down syndrome to work in the Center and attend clinic visits.
- Visits to help pediatric patients and their families transition to adult care would be 15 minutes instead of up to two hours.
- Behavioral health visits (virtual or in-person) with a practitioner experienced in Down syndrome and dual diagnoses of autism would not happen.
- Dr. Vellody's educational podcasts with experts would not exist to help families all over the world navigate the challenges of Down syndrome.
- Training medical school students, pediatric residents and genetic counselors about caring for people with Down syndrome would not happen in Pittsburgh.
- Research would be undercut:
- Patients with Down syndrome may not know about or participate in national studies to improve upon issues that affect people with Down syndrome.
- Physician scientists would not be able to lead research such as that being done by Dr. Robyn Filipink of UPMC Children's Hospital of Pittsburgh Neurology Division to look at regression in patients with Down syndrome, and Dr. Anna White's study of nutrition services and fitness programs for adults with Down syndrome to prevent or address obesity.