The financial challenges of raising a child with special needs can be overwhelming. Studies have shown that depending on the state of residence, 91% of families of children with special health care needs experience an added financial burden. Extra costs include therapies, rehabilitation, specialty doctors, hospitalizations, and medications.
Low-income families are especially at risk for financial challenges. A large percentage of their income goes to caring for the child and if the money isn’t there, it can be the child’s health that suffers. Parents are forced to choose between paying the mortgage and paying for treatments. In addition, for many children with special needs, daycare is not an option. Therefore, one parent must stop working in order to care for the child, which can drastically reduce the families overall income.
Each state runs their programs, such as Children with Special Health Care Needs, differently and therefore, families in states like Massachusetts spend less on the same treatments and care that their child needs than families who live in Georgia do. However, despite the family’s location, 40% of those who use their state CSHCN program stil experience financial burden due to their child’s condition, regardless of the help they are given. See how your state ranks.
The hope is that this information will help policy makers understand the financial challenges that families of children with special needs face and how those challenges are effecting the health of children. State programs such as Medicaid and SCHIP can be altered to alleviate some of the burden on families. Program funding can be increased and eligibility levels can be changed.
Families should never have to choose between caring for their disabled or chronically ill child and having a roof over their heads. When policy makers work together using this evidence-based information, lives of children and the well-being of families can be saved.
