Filling Gaps in Your Services

No single organization can meet every family’s needs, but with strong partnerships and knowledge of available services, we can ensure that families receive the full spectrum of support. During this month’s Medical Outreach Meeting, Dr. Stephanie Meredith walked through essential resources that can help fill gaps in your organization’s services.

Emotional and Medical Support

• Courageous Parent Network: CPN is a phenomenal resource for families of children who are medically complex. They have a library of resources and host regular webinars for families.
• Local churches and faith-based communities: Faith communities frequently serve as first points of contact when a family receives a new diagnosis. By forming a relationship with local churches, you can ensure that they have the essential information to emotionally and practically support families. Key tips:
  • Identify churches with a Special Needs Ministry
  • Build relationships with leaders who support congregants after a diagnosis
  • Provide resources for faith leaders to share with families
  • For more information, check out our meeting on Reaching New and Expectant Parents through Faith-Based Organizations!
• National Down Syndrome Adoption Network: NDSAN provides non-directive information to help families explore options after learning about a diagnosis of Down syndrome. If they decide to pursue adoption, NDSN ensures that children are matched with families who are qualified and prepared to raise a child with Down syndrome.
• Postpartum Support International: PSI is a great resource for parents experiencing mental health challenges related to postpartum depression, emotional distress, or difficulty coping. They offer:
  • A 24/7 hotline
  • Connections with other parents experiencing similar things
  • Counseling with trained mental health specialists

Financial Support

• Supplemental Security Income (SSI) for Children: SSI for children is based on both disability status and household income. Children with Down syndrome almost always qualify on the disability criteria, so eligibility depends on parental income and strict asset limits. Social workers at your local hospital are the best point of contact for families beginning this process.
• SSI for Adults: The vast majority of adults with Down syndrome qualify for SSI, which can support daily living expenses.
• State Programs: Many states offer long-term support programs that provide financial assistance for things like medical equipment and support staff. These programs go by different names in every state, and vary widely in their structure. They can have long wait times, making it important to apply as early as possible.

Health & Development Support

• Medicaid: Foundational for many families to access healthcare.
• Katie Beckett/TEFRA: These programs support children with disabilities regardless of parental income. These waivers can cover services that are not normally covered by insurance, or provide insurance to those who cannot otherwise receive insurance. These programs go by different names in different states, and funding levels and waitlists vary widely between states.
• Home and Community Based Service Waivers: HCBS waivers fund services and supports such as health services and support staff. Some state HCBS waivers allow family members to be paid caregivers, while others do not.
• Prenatal and maternal support programs: These programs differ by region, but many counties and states have programs that offer services such as transportation to appointments, help securing newborn insurance, and resources for medically vulnerable or underserved communities. Example programs include:
  • Babies Born Healthy
  • Healthy Mothers, Healthy Babies
  • Planning for Healthy Babies
• Early Intervention: Each state provides different Early Intervention services, and typically include services such as developmental evaluations and physical, occupational, and speech therapy. Find your state’s Early intervention program through the Parent Center Hub directory.

The Role of Medical Outreach

Clinicians cannot know all the resources available for children with Down syndrome, and that’s where we come in. By building relationships with providers, clinics, and hospitals, we can help them identify supports and services that address critical social determinants of health and improve long-term outcomes.

Thank you to everyone who joined this week’s meeting! To join future Medical Outreach Meetings, email viviane.pederson@geneticsupportfoundation.org!