Click on the resources below to learn more about each topic. You can also use the search bar above.
Advocacy has many forms that ultimately seeks to ensure that all people have their voices heard, defend and protect their rights, and have their views and wishes genuinely considered when decisions are being made about their lives. Click on "Advocacy" to learn more about local and national issues.
Advocacy involves actions taken by concerned citizens to demonstrate their support for an issue. In the case of Down syndrome advocacy, these issues are usually related to healthcare and research, education, economic self-sufficiency and employment and integration into the community. It is important that advocates for the Down syndrome community engage with federal, state and local government and make their voices heard. Above anything else, the key to effective advocacy at any level of government is to build relationships with elected officials in order to educate and influence their viewpoints on critical issues and legislation facing the Down syndrome community.
Click on the links below to learn more about local and national advocacy-related issues:
Smashing fashion with function, BILLY Footwear has AFO brace-friendly shoes that incorporate zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. Thus the wearer can place his or her foot onto the shoe footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures overtop the user's foot. It's simple. It's easy.
Click above to learn more about some local programs to check out.
Local athletic programs to check out:
- Special Olympics (follow link to find your County)
- Special Olympics Young Athletes Program
- Miracle League of Western PA (follow link to find your area)
- Three Rivers Adaptive Sports
Therapeutic Riding Programs:
- Horses with Hope
- Hilltop Horizons
- Elliott Acres
- In Stride
- Slippery Rock University, Storm Harbor Equestrian Center
Behavior can be frustrating and confusing, but a form of communication. Here are some tools and resources to help you navigate and better understand how to reframe behavior. Click above to learn more.
Behavioral Challenges resource page with the National Down Syndrome Society (NDSS)
Click above to learn about sibling programs, music programs, camps/retreats, wish programs, and more.
Click on the links below to learn more about each program.
- Best Buddies
- The Friendship Circle
- Center for Independence
- The Woodlands
- TRY Special Needs
- Team Friends
- The Watson Institute
- Wesley Family Services
- Easter Seals
- The Barber Institute
- TRY Special Needs
- Apraxia KIDS
- Creative Melodies
- Music Therapy at Wesley Family Services Creative Arts Program
- Kathy's Music
- Three Rivers Music Therapy
- The Woodlands
- PALS Summer Programs
- Future Camp
- Camp PARC
- Camp Laugh-A-Lot
- Camp Apple Program
- YMCA Camp Aim
Can a person with Down syndrome also have autism? Yes! In fact, about 18% of people with Down syndrome also have autism spectrum disorder (ASD)
To learn more about symptoms, potential challenges, and additional support, click on the title above.
Down Syndrome & Autism
Autism is a disorder that affects the brain’s normal development of social and communication skills. The CDC states that one in every 68 children in the general population is on the autism spectrum. It is believed that up to 18 percent (some research suggests up to 39 percent) of individuals with Down syndrome also have autism spectrum disorder.
Learn more about Down syndrome & Autism symptoms, potential challenges, and additional support below:
- Down Syndrome and Autism Spectrum Disorder (DS-ASD) - Resource from Autism Speaks
- Autism and Intellectual Disabilities in Pennsylvania (AID in PA)
- Free Webinar from NDSC - DS-ASD: Recognizing Signs and Tailoring Interventions
- Down Syndrome Resource Foundation
- Down Syndrome - Autism Connection
- Putting the Pieces Together - The Down Syndrome - Autism Intersection Blog
If you have recently heard the word "Autism" on your journey, we would encourage you to read this piece entitled "Recalculating" written by one of our parents.
Your EBT ACCESS card may be eligible for discounts at the following local museums, museums in other states and Amazon Prime.
Check out the National Down Syndrome Society's 2023 Entrepreneurship Webinar, including a panel discussion with entrepreneurs with Down syndrome sharing their stories, insights, and tips for overcoming obstacles and achieving success in the world of entrepreneurship. Panelists included Austin’s Underdawgs, Candidly Kind, John’s Crazy Socks, and Matthew’s Bonfire BBQ. You can also download NDSS' Entrepreneurship Guide here.
Parents are very important participants in the special education process. Parents know their child better than anyone else and have valuable information to contribute about the kinds of programs and services that are needed for their child’s success in school. To ensure the rights of children with a disability, additional laws have been enacted. Click on "Special Education & IEPs" to find invaluable resources on these topics.
Special Education & IEPs
Review the resources below for more information on Special Education & IEPs:
- The PA Parent Guide to Special Education is an invaluable resource
- 2022 Back to School Guide - From the Education Law Center
- PEAL Center - local organization that works with families, youth and young adults with disabilities and special health care needs
- PaTTAN - Pennsylvania Training and Technical Assistance Network
- Resources to support positive behavioral outcomes for students
- Celebrating Communities of Belonging for Students with Significant Cognitive Disabilities
- The Power of Peers: Introduction to the Peer Engagement Implementation Guides
- Down Syndrome: Guidelines for Inclusive Education
- Inclusive Instruction for Students with Significant Cognitive Disabilities
- Comprehensive Guide to IEPs
- Wright's Law FAQ's About IEPs
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
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
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 & 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