Health Care Needs and Access to Care
Children with special health care needs require a broad range of services, from primary and specialty medical care to prescription medications, medical equipment and therapies. In addition to the needs of the child, families of CSHCN may need additional services, such as respite care, family counseling, or genetic counseling.
This section describes the percent of CSHCN who need each of a variety of medical and ancillary services, and the percent whose families need each type of support service. In addition, this section presents the percent who say they needed the service during the past year but did not receive it.
Other aspects used to assess access to care are described here as well, including the percent of CSHCN who had difficulty receiving referrals for specialty care when they needed them. In addition, this section includes indicators that describe access to a usual source of care when sick, an important element of primary care for children. These indicators include the percent of CSHCN who have a place that they usually go to when they are sick and whether they have a personal doctor or nurse.
Health Care Needs
To assess the prevalence of need for specific services, parents were asked whether there was a time in the past year when their children needed any of the services listed in the graph below.
Like all children, those with special health care needs require preventive health care and dental services, as reflected in the high proportion or respondents who reported that their children needed these services.
In addition, CSHCN need a variety of other services to manage their conditions, maintain their abilities, and promote their their development. The need most often cited for CSHCN is prescription medication: nearly 88 percent of these children are reported to need prescription drugs. Just over half of CSHCN need the care of medical specialists, such as cardiologists or pulmonologists. Other services needed by a smaller proportion of children include vision care (needed by 36 percent of children); mental health care (25 percent); medical supplies (25 percent); and physical, occupational, or speech therapy (24 percent).
Some of the services needed that are reported infrequently among the entire population of CSHCN are much more commonly needed by children whose conditions usually, always, or greatly affect their abilities. Of the children whose conditions affect them a great deal, nearly half require specialized therapies, 43 percent need mental health services, and 65 percent need specialty medical care.
Other needs vary greatly by age. Preschool-age children (ages 5 and under) are much more likely than older children to need home health care (10 percent, compared to less than 4 percent of adolescents, need this services), medical equipment* (21 percent, compared to 7 percent of adolescents), and health aids (10 percent, versus 4 percent of adolescents). Conversely, adolescents (ages 12-17) are more likely to need mental health services (31 percent, compared to 9 percent of preschoolers) and mobility aids (6 percent, compared to 2 percent of preschoolers).
* Excluding hearing aids, vision aids, mobility aids, communication aids, and medical supplies
Services Needed but Not Obtained
For each service, families were asked if their child received all of the care that he or she needed. Children may not receive services they need for various reasons, including financial barriers, lack of access to providers, competing demands on families’ time, and children’s willingness to receive needed care.
Overall, 18 percent of CSHCN were reported to need at least one health care service that they did not obtain in the past year. Services needed but not obtained are most common among poor children (of whom 32 percent were reported to not receive at least one service they needed) and uninsured children (of whom 46 percent were reported to need at least one service not received).
The service most commonly reported as needed but not received was dental care: more than 8 percent of CSHCN overall needed but did not obtain this service. Other relatively common services needed but not obtained were mental health services (4.6 percent), specialist care (3.7 percent), and therapies (2.6 percent).
Low-income and uninsured children are the most likely not to obtain needed services. For example, among children in poverty, nearly one-third reported at least one service needed but not received, the most common being dental care (16 percent of poor children) and mental health services (9 percent). Similar reports of services needed but not obtained are found among children with family incomes between 100 and 199 percent of poverty.
Among uninsured children, nearly half reported not receiving needed services, with 29 percent lacking needed dental care and 14 percent lacking needed mental health services. In addition, 15 percent of uninsured children with special health care needs did not receive needed preventive care, and 14 percent did not receive needed specialty care. In comparison, the service that privately-insured children are most likely to lack is dental care; 5 percent needed but did not obtain this service.
Need for Family Support Services
In addition to their children’s needs, families of CSHCN may often benefit from services that help them to cope with the challenges associated with their children’s conditions. Family support services addressed in the survey include family counseling (mental health care for other family members), respite care (having someone else care for the child so the parents or other family members can take a break), and genetic counseling (for advice on inherited conditions related to the child).
Overall, family counseling is the support service most commonly needed by families of CSHCN, with the families of more than 13 percent of CSHCN needing this service. Nearly 9 percent needed respite care, and almost 7 percent needed genetic counseling.
Family Support Services Needed but Not Obtained
A total of 5.1 percent of CSHCN reported needing but not obtaining family support services. The most common of these is family counseling, needed by the families of 2.8 percent of CSHCN, followed by respite care (2.1 percent) and genetic counseling (1.3 percent).
While these overall proportions are small, families of low-income and uninsured children were most likely to report needing but not receiving family support services. Of CSHCN in poverty, nearly 5 percent live in families that reported needing family counseling but did not receive it, and 3.6 percent needed but did not receive respite care. Among CSHCN in families with incomes of 400 percent of poverty or more, only 1.3 percent live in families that did not receive needed family counseling and 1 percent live in families who needed but did not obtain respite care.
Families of uninsured children are more likely to report needing but not obtaining support services than those with private insurance. The families of 7 percent of uninsured children did not receive needed family counseling, 4.5 percent did not receive needed respite care, and 4.4 percent did not receive genetic counseling. In comparison, among the families of privately-insured children, 1.9 percent did not receive needed family counseling, 1.1 percent did not receive needed respite care, and less than 1 percent did not receive needed genetic counseling.
Difficulty Receiving Referrals
One important measure of access to care for CSHCN is their ability to receive necessary specialty care, for which a referral is often required. Parents were asked how much of a problem it was over the past 12 months to get a specialty referral for their children.
Of those who needed specialty care over the past 12 months and who required a referral, nearly 9 percent reported having “a big problem” getting a referral and over 13 percent had “a small problem.” Reported problems obtaining referrals were most common among children who are uninsured; one-third of these children had a reported problem receiving referrals, compared to 19 percent of those with private coverage.
Usual Source of Care When Sick
Another measure of access to appropriate care is whether children have an identified place to go when they are sick. The survey asked whether there is a place, and what kind of place, the family usually goes to when the child is sick or when the family needs advice about the child’s health.
Overall, 92 percent of CSHCN have a usual source of sick care. In the vast majority of cases (73 percent), this is a private doctor’s office; for 13 percent of children, it is a clinic or health center; for less than 2 percent, it is an emergency room, and for about 5 percent, it is another setting, such as a hospital outpatient department or a school nurse’s office. Nearly 8 percent of CSHCN have no usual source of sick care.
The proportion of CSHCN with no usual source of sick care did not vary substantially by family income: 8.2 percent of poor children have no usual source of care, compared to 6.4 percent of children in high-income families. However, the types of providers most commonly named as usual sources of care do appear to be related to family income. Only 58 percent of poor children have a doctor’s office as their usual source of care, compared to 82 percent of children with family incomes of 400 percent of poverty or more. Nearly one-quarter of poor children go to clinics or health centers, compared to 8 percent of those in high-income families. Moreover, children in poverty are more than four times as likely to rely on emergency rooms as their usual source of care than are those in higher-income families (4 percent compared to less than 1 percent).
Personal Doctor or Nurse
The survey also asked whether children have a personal doctor or nurse, defined as a single health care provider who knows the child best. Because the health conditions and risks faced by CSHCN can be complex, having such a consistent source of care can be especially important.
Overall, 89 percent of CSHCN are reported to have a personal doctor or nurse and 11 percent do not. The proportion of children who lack a personal health care provider is highest among children from low-income families, of whom 18 percent do not have such a provider. Among children with family incomes of 200 percent of poverty or more, 8 percent lack a personal doctor or nurse.