Support Brainstorming
Together, we brainstormed a list of ideas and resources to support families facing access barriers:
Transportation
- Apply for grants or seek donations for transit costs
- Cover parking for NICU parents
- Consider location accessibility (e.g., determine where families are coming from, host events in places accessible by public transit, have multiple sections in larger cities)
Financial
- Access Early Intervention: https://www.parentcenterhub.org/
- Find a Parent Training and Information Center: https://www.parentcenterhub.org/find-your-center/
- Find a Family-to-Family Health Information Center: https://familyvoices.org/felsc/whataref2fs/
- Apply for Supplemental Security Income (SSI): https://www.ssa.gov/ssi (generally monthly stipend + Medicaid coverage)
Food
- Provide meal vouchers for families in hospitals (many may donate for this cause!)
- Donate non-food essentials (e.g., wipes, blankets) that might then allow families to afford food
- Host a food drive, food order, or meal trains for families in need (e.g., families with health emergencies, recent death): You can organize meal trains in a group chat/email thread or use tools like https://www.mealtrain.com/
- Organize holiday support such as end-of-year fundraising campaigns or food and gift holiday drives
- Apply for SNAP benefits: https://www.fns.usda.gov/snap/state-directory
- Find a local food bank: https://www.feedingamerica.org/find-your-local-foodbank
Housing
- Help families find family support or low cost housing
- Apply for Section 8 Housing: Apply for a housing choice voucher through your local Public Housing Agency (PHA) https://www.hud.gov/contactus/public-housing-contacts#close
Healthcare
- Apply for Supplemental Security Income (SSI): https://www.ssa.gov/ssi (generally monthly stipend + Medicaid coverage)
- Apply for Katie Beckett waivers (depends on state)
- Find free or low-cost clinics, safety net hospitals
- Apply for HCBS waivers (waitlists depend on state):
General Support
- Ask for volunteers, donations, food, etc: https://www.justserve.org/
- Connect with local food pantries and meal programs and find resources for housing, financial assistance, health care, and more: https://www.findhelp.org/
- For families truly in distress, moving states for increased support may be the best option. You can help families determine what states cover Katie Beckett waivers and other support programs through online resources such as:
October Accomplishments
Thank you to everyone for all your incredible work this October in celebration of Down Syndrome Awareness/Acceptance Month! Here are just a few of our participants’ accomplishments:
- Lettercase: Added Haitian Creole translation to Understanding a Down Syndrome Diagnosis
- Down Syndrome Association for Families of Nebraska: Translated printed materials into Spanish and Arabic (all links are to Arabic resources, A Book of Stories includes stories from local families about Down syndrome)
- Virginia Down Syndrome Association: Hosted their Step UP for Down Syndrome event in new regions
- North Carolina Down Syndrome Alliance: Hosted their annual Buddy Walk
- Western Colorado: Conducted outreach for Halloween
- Central Illinois Down Syndrome Organization: Provided materials for classrooms
