If your baby receives a diagnosis after newborn screening (NBS), help is available. A range of resources exists to provide financial, social, and emotional support.
Financial Resources
Your baby’s health care provider, the specialty clinics, and your state’s children with special health care needs program can provide you with information and assist to connect you to the local, state, or federal financial resources available to your family.
Types of financial resources available include the following:
- Department of Human Services in each state
- Medical Assistance
- Patient Assistance Programs through the National Organization for Rare Disorders
- Social Security
- TEFRA (Medical Assistance eligibility for children whose parents either have too much income to qualify for Medical Assistance or other health care programs or who qualify but the cost would be too high)
Family Support Organizations
Support organizations can help you connect with other families having similar experiences, which can be an important part of NBS.
Families choose to reach out for social support for different reasons. Some want to connect with people who understand what they are experiencing. Others want to find the latest health information about their baby’s condition, learn about new treatments or interventions, or get help navigating the medical and insurance systems.
Support resources for families include the following:
- Condition-specific groups
- These groups focus on a specific condition or group of conditions. They provide support and resources for people affected by that condition.
- Find groups that focus on specific conditions.
- Examples include:
- Support and resources-focused groups
- Fundraising and research-driven groups
- Advocacy and policy-oriented groups
- Alliances or umbrella groups
- These groups work with families and individuals, and other organizations that include a range of conditions, not just one type. They provide broader support and resources aimed at the varying issues families face when going through the health care system for treatments and interventions. They also work with other groups on issues such as insurance coverage, family engagement policies, access to treatments, and research initiatives.
- These groups may offer opportunities for involvement in the health care system through participating in work groups and committees, if or when families are ready for these activities.
- Examples include: