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Click on the resources below to learn more about each topic. You can also use the search bar above.

Down Syndrome Center

​Down Syndrome Center of Western PA

The Pediatric Down Syndrome Center is located at UPMC Children's Hospital. Services include comprehensive medical assessments and referral of patients to specialists by following the newly updated Pediatric Health Care Guidelines for Down syndrome

​The Adult Down Syndrome Center at UPMC is one of a few clinics in the world that:

  • Devotes its full focus to adults with Down syndrome and remains unique in its team approach to patient care.
  • Offers person-to-person time with adults with Down syndrome and their loved ones.
  • Provides lifespan support – from prenatal diagnosis through adulthood. 

Services include comprehensive medical assessments and referral of patients to specialists by following the Medical Care Guidelines for Adults with Down syndrome. To share with your PCP's, is the Adult Care Checklist.

The Down Syndrome Podcast Series provided by UPMC Children’s Hospital of Pittsburgh and hosted by Kishore Vellody, MD, medical director. These podcasts focus on a wide range of issues related to Down syndrome for parents, caregivers, educators, and medical professionals. Podcasts are updated regularly and feature discussions with medical experts in cardiology, otolaryngology, sleep disorders, infectious diseases, and more

​Reach out to the DSC at DownSyndromeCenter@chp.edu or 412-692-7963


Toolkits

Special Needs Personal Planning Guide by Acheiva Family Trust - Providing peace of mind to individuals with disabilities and their familes. 

Advocacy Toolkit for Self-Advocates - A guide to provide tools and advice to self-advocates with Down syndrome.

Family Care Toolkit - This toolkit is created for the caregiver as it is essential to have important information all in one place.

NDSC's Adult Sibling Toolkit - ​Just for adult siblings, this toolkit is designed to jump-start conversations with parents about becoming more involved in their brother or sister’s life.


Book Recommendations About Down Syndrome, Inclusion, and Acceptance

Our friends at the Down Syndrome Association of Central Ohio have compiled a list of some books that are great options to send to your child’s school about inclusion and acceptance:

• “You Matter” – Christian Robinson
• “Dreamers” – Yuyi Morales
• “A Friend like Anian: The First Day of School” – Meeka Caldwell
• “Happy Right Now” – Julie Berry & Holly Hatam
• “I am Perfectly Designed” – Karamo Brown
• “Outside In” – Deborah Underwood
• “What Do You Do with a Problem” & “What Do You Do with an Idea” – Kobi Yamada
• “Just Ask! Be Different, Be Brave, Be You!” – Sonia Sotomayor
• “You Hold Me Up” – Monique Gray Smith & Danielle Daniel
• “More Alike Than Different: My Life with Down Syndrome” – David Egan
• “Demystifying Disability: What to Know, What to Say, and How to be an Ally” – Emily Ladau
• “You Are Enough” – Margaret O’Hair and Sofia Sanchez
• “Different – A Great Thing to Be!” – Heather Avis


Financial Planning

​Proper estate planning becomes even more critical if you have a family member with a disability, such as Down syndrome. There are many aspects to be considered so that your loved one can experience their best life without jeopardizing their government benefits.

​PA ABLE Savings Program for Disability-Related Expenses

A PA ABLE account gives individuals with qualified disabilities (Eligible Individuals), and their families and friends, a tax-free way to save for disability-related expenses, while maintaining government benefits. Federal and state law authorized the creation of PA ABLE accounts. To enroll or learn more, visit here.

Special Needs Trusts

Achieva Family Trust helping individuals with disabilities and their families plan for the future and enhance their lives through special needs trusts. They host webinars as well as offer individuals resources future planning.
Special Needs Trusts 101
Special Needs Financial Planning with Bob Corcoran


COVID-19

COVID-19 & Down Syndrome

COVID & DS Updated Resource - Collaborate resource developed from national organizations.
COVID Vaccine Statement - Down Syndrome Medical Interest Group-USA
Down Syndrome Center Podcast - Dr. Kishore Vellody hosts this podcast series and listen for most recent COVID updates.
CDC's COVID Materials for People with Intellectual and Development Disabilities and Care Providers
Resources for Caregivers
​Educational Resources


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