Many families raising children and youth with special health care needs (CYSHCN) have higher routine expenses for such things as transportation to and from appointments, parking, electricity, and specialized clothing that health insurance does not typically cover but that are directly related to a child’s health needs. Families also incur additional expenses to modify a vehicle or housing. To help with the extraordinary expenses that can overwhelm a family’s budget, several states have relief funds that help families avoid financial hardship and medical debt.
The Special Bequest Fund in Kansas is a trust that provides financial support for medical equipment, education, or other items that can improve health outcomes or function, and quality of life for individuals with special health care needs.
The Michigan Children with Special Needs Fund is an endowment that helps support some equipment needs for families with CYSHCN when there is no other federal, state or private insurance funding available. The Title V programs works directly with vendors and helps pay them for the services and/or equipment they provide to eligible families.
Massachusetts’ Catastrophic Illness in Children’s Relief Fund is a payer of last resort for families who incur excessive financial burdens in caring for a child with expensive special health care needs and disabilities. Families can apply for financial assistance and be reimbursed for costs not covered by insurance or other sources of financial support. Children do not have to have a catastrophic illness to be eligible for this fund. The name merely recognizes that the out-of-pocket costs of providing needed services for a CYSHCN can have a catastrophic effect on a family’s finances.