Because families are their child's primary caregiver and because CYSHCN often need services not covered by insurance, the impact of caring for a CYSHCN is felt by the families in many ways. The following information is taken from the Data Resource Center.
According to the 2005/2006 National Survey of Children with Special Health Care Needs, over 18% of families report financial problems due to child's health conditions. For those families of CYSHCN who have functional limitations or who require above routine Rx meds and service use, this percent is even higher.
Families of CYSHCN with Financial Problems
Many services that a CYSHCN needs are often not fully covered by insurance, such as therapies, home health care, prescription drugs, mental health care, medical equipment, and dental services. As a result, families must pay for these services out-of-pocket. Families of over half of CSHCN reported spending $250 or more on health care in the previous year for the care of their CSHCN. The families of 13 percent of CSHCN spent between $501 and $1,000, and the families of 20 percent of children spent more than $1,000.
Families of CYSHCN and Out-of-Pocket Expenses
Time Spent Providing Care
Families often need to spend considerable time caring for their CYSHCN, depending on their needs, which may include administering medications, assisting with therapeutic exercises, maintaining equipment such as g-tubes and respirators, transporting their children to appointments, monitoring their child's conditions, and communicating with providers. According to the 2005/2006 National Survey of Children with Special Health Care Needs, 47% of families of CSHCN spend less than an hour a week on these activities, 34% devote 1 to 4 hours a week to these tasks, and 10% families spend 11 hours a week or more. As shown in the chart below, for children with functional limitations, almost 25% of families spend 11 hours a week or more.
Time Spent Providing and/or Coordinating Child's Health Care
Effect on Employment
Because for many families of CYSHCN caring for them takes considerable time, many families have had to cut back their work schedule or give up their jobs. The 2005/2006 National Survey of Children with Special Health Care Needs reports that almost 24% of families of CYSHCN have cut back or stopped working. When this analysis is done by type of special need, it is evident that families of children with functional limitations are even more severely impacted.
Families who Cut Back or Stopped Working
However, giving up a job or reducing the number of hours worked puts parents in an unconscionable bind as they need money to pay for their child's care, as shown above. Overall, 40.3% of families of CYSHCN are between 0-199% of the Federal Poverty Level compared with 36.7% families without CYSHCN.