Impact on Families
Having a child with special health care needs can affect a family’s finances, employment status, and mental health. The demands on families may require that parents cut down their work hours or give up a job, at the same time that they face burdensome out-of-pocket health care costs.
This section describes the impact that children with special health care needs have on their families. One way to measure this impact is in dollars, as families often have substantial out-of-pocket expenses for their children’s health care that are not covered by insurance. Parents were also asked whether their children’s conditions created a financial burden, another measure of the economic impact of having a child with special health care needs.
Another measure is the time spent by family members in providing care directly or arranging for and coordinating their child’s care. The third indicator presented in this section is the number of hours parents spend per week on these tasks.
Finally, parents were asked whether their children’s needs had required them to cut down on work or stop working altogether to care for their child—requiring both the parent’s time as well as a financial sacrifice.
Families are often required to pay out of their pockets for health care services not covered by their insurance plans; these services may include therapies, home health care, prescription drugs, mental health care, medical equipment, and dental services. Families of nearly half of children with special health care needs reported spending $250 or more on health care in the year preceding the survey (this includes only expenses for the child with a special health care need, not other family members). The families of 13 percent of CSHCN spent between $501 and $1,000, and 11 percent of CSHCN live in families that spent more than $1,000 in a year.
Children from low-income families are less likely to have high levels of expenditures than are children from families with higher incomes. This could be because children in low-income families are likely to be covered by Medicaid and CHIP. In addition, these data only include the expenses that families actually paid; low-income families may be more likely to have unpaid bills that are not reported here.
The families of non-Hispanic White children are the most likely to pay more than $1,000 in health care expenses: nearly 13 percent do so, compared to the families of 4 percent of non-Hispanic Black children and 10 percent of Hispanic children. Non-Hispanic White children are also the least likely to live in families that pay less than $250 per year.
The level of out-of-pocket costs borne by families of CSHCN also varies by their children’s insurance status. Twenty percent of uninsured children’s families pay more than $1,000 annually, compared to less than 13 percent of those with private coverage and 4 percent of those with public insurance. Similarly, 76 percent of children with public coverage live in families that pay less than $250 per year for their out-of-pocket health care expenditures, compared to 42 percent of those with private insurance and 36 percent of the uninsured.
To further assess the financial impact of a child’s condition on his or her family, the survey asked whether their child’s condition or need has caused a financial problem. It was reported that slightly more than 20 percent of CSHCN have conditions that create financial problems for their families. Even though children from low-income families have lower out-of-pocket costs, these children are more than twice as likely as children from higher-income families to have conditions that result in self- reported financial problems.
This financial burden appears to be greatest for the families of CSHCN who are uninsured. Over 40 percent of uninsured CSHCN live in families that reported a financial problem, compared to 24 percent of those with public coverage and 17 percent of those with private coverage.
Families of children whose conditions have a severe impact on their abilities are also the most likely to report experiencing financial problems. Nearly 40 percent of children whose conditions affect their abilities always, usually, or a great deal live in families that report experiencing a financial problem, compared to only 9 percent of children whose conditions never affect their abilities.
Time Spent Providing Care
Many families devote substantial amounts of time to
care. Many families participate in providing health care to their children
through such tasks as administering medications and therapies, main-taining
equipment, and providing transportation to appointments. Families also
spend time arranging or coordinating care for their child by making appointments,
making sure that care providers are exchanging information, and following
up on their child’s health care needs. While the families of over
half of CSHCN spend an hour a week or less on these activities, the families
of 22 percent devote 2 to 5 hours a week to these tasks, and the families
of 13 percent spend 11 hours a week or more.
The greater the impact of a child’s condition on his or her functional ability, the more time the family spends on the child’s care. The families of over 28 percent of children who are affected usually, always, or a great deal by their condition spend more than 11 hours per week providing, coordinating, or arranging their care, compared to the families of more than 5 percent of children who are never affected by their conditions.
Impact on Employment
The complexity of a child’s special needs and the parents’ need to devote time to the child’s care sometimes requires that parents cut down on the number of hours they work or stop working completely to care for their child. Overall, the parents of nearly 17 percent of CSHCN report having cut back on work and the parents of another 13 percent have stopped working because of their children’s needs.
Of course, giving up a job is likely to reduce a family’s income. Therefore, it is not surprising that children in lower-income families are more likely to have parents who have given up their jobs: 26 percent of CSHCN in poverty and 19 percent of those between 100 and 200 percent of poverty have parents who reported stopping work to care for their children, compared to less than 7 percent of children with family incomes of 400 percent of poverty or more.
A change in employment status is also more apt to occur in families that have a child who is more affected by his or her condition. The parents of over half of children who are affected usually, always, or a great deal by their conditions either cut back on work hours or stopped working entirely. Among children who are never affected in their abilities, only 15 percent have parents who decreased work hours to care for their children.