Measures of Access to Services for Children with Special Health Care Needs (State-Level Data) on Kidsdata.org
Children with special health care needs (CSHCN) are defined as those who have a chronic physical, developmental, behavioral, or emotional condition and who also experience consequences due to their condition, such as above-routine use of health and related services or limitations in activities compared to other children. On kidsdata.org, indicators related to access to services for CSHCN include:
- Access to a usual source of health care
- Access to a variety of services, including medical, mental and dental care, as well as community-based services, early intervention, special education services, and transition services to adulthood
See www.kidsdata.org/cshcn
for the full list of indicators related to CSHCN, including data on
demographics, the impact of chronic conditions, quality of health care, and health insurance
coverage. These data come from the National Survey of Children with
Special Health Care Needs and the National Survey of Children's Health,
and are available only at the state and national level. The surveys are
conducted through telephone interviews with parents.
Approximately 1 million California children and youth have a need for
health care services of a type or amount beyond that required by
children generally. Their ongoing health problems -- physical,
behavioral, mental, or emotional -- can affect their ability to function
and participate in activities important to their education and
development. In some cases their health problem, especially if not
treated appropriately, can shorten their lives (1). The care of
children with special health care needs is often complicated by the
co-occurrence of mental health problems, depression and anxiety, along
with their chronic physical health conditions (1, 2). Because of the
higher caregiving burdens of families of children with special needs,
they tend to experience more difficulties in the areas of employment,
child care, and parental stress than families of other children (1).
By definition, children with special health care needs require more
health care services than other children, and they account for more than
40% of all health care costs among children nationwide despite making
up only 16% of the U.S. child population (1). Though advances in medical
care have extended and improved the lives of millions of children,
obtaining timely, appropriate and affordable care remains a problem for
many families. More than four in five children with special health care
needs do not receive one or more basic aspects of quality health care,
in California and nationally (1). Improving access to quality care is
critical to improving the health and well-being of children with special
health care needs.
For more information on this topic, see kidsdata.org’s Research & Links section.
Sources for this narrative:
- Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Children with Special Health Care Needs in California: A Profile of Key Issues
- Blanchard, L. T., et al. (2006). Emotional, developmental, and
behavioral health of American children and their families: A report from
the 2003 National Survey of Children’s Health. Pediatrics, 117(6), e1202-1212. Retrieved from: http://pediatrics.aappublications.org/content/117/6/e1202.full.
Children and youth with special health care needs (CSHCN), like all
young people, need consistent access to appropriate medical,
educational, and social services and opportunities. For children with
special health care needs, especially those with more complex
conditions, common challenges include access to high-quality,
coordinated and consistent medical care; difficulty participating in
school and recreational activities; and family economic insecurity due
to medical costs and caregiving demands (1, 4, 6, 8).
According to research and subject experts, policies to promote the health and well
being of children with special health care needs and their families
should address:
- Comprehensive and consistent health care coverage: CSHCN
need comprehensive health insurance that provides adequate medical and
mental health coverage, including access to specialty care providers.
These children also need consistent coverage, without gaps that can
cause delays or problems receiving critical specialty services (1).
- High-quality, well-coordinated, and consistent services: CSHCN
benefit from evidence-based health care services tailored to specific
and complex health needs; these services should be well-coordinated with
one another and provided in the context of a “medical home” (2, 3, 8).
Quality, consistent services depend on having adequate numbers of
primary and specialty care providers serving CSHCN; policies and
programs should address training and education toward this end.
Appropriate reimbursement also is critical to maintaining an adequate
provider network (7).
- Family-centered care: Children and youth exist within the
context of their families. The values, strengths, cultural norms, and
priorities of families should be met with sensitivity and integrated
into health services. Families also should be included as partners in
all health care decision-making for CSHCN (1).
- Early and continuous screening: Systematic screenings for
special health care needs beginning early in a child’s life have the
potential to reduce long-term consequences of some chronic conditions.
Such screenings help identify problems early and can provide an
opportunity to assess the needs and strengths of families, as
part of providing tailored and family-centered health or educational services (1).
- Inclusion: Providing CSHCN with opportunities for
inclusion with other children in academic, social, and recreational
settings is critical to their development and can maximize achievement and quality of life (5).
- Support for adulthood transition: As CSHCN age, they need
support from their health care, educational, and social service systems
to successfully transition to adulthood. For example, they may need
assistance to move from school to work or post-secondary education, from
pediatric care to adult health care, and/or from family dependency to
self-sufficiency (1, 5, 8).
- Financing of care: Families of CSHCN must navigate a
complicated web of service systems with dueling eligibility criteria and
confusing payment policies. This can result in delayed or denied
services for children and financial hardship for families. State policy
must work toward a unified, efficient and comprehensive payment system
(3, 7).
For more policy ideas related to children with special health care needs, see the Research & Links section on this page.
Sources for this narrative:
- U.S. Department of Health and Human Services, Health Resources and Services Administration. (2006). The National
Survey of Children with Special Health Care Needs Chartbook 2005-2006. Retrieved from: http://mchb.hrsa.gov/cshcn05/
- Inkelas, M., et al. (2004). Access to health care for California’s children with special health care needs: Chartbook. UCLA Center for Healthier Children, Families and Communities. Retrieved from: http://www.healthychild.ucla.edu/PUBLICATIONS/Documents/Chartbook.pdf
- Association of Maternal and Child Health Programs and Lucile Packard Foundation for Children’s Health. (2009). Models
of care for children and youth with special health care needs:
Promising models for transforming California’s system of care. Retrieved from: http://www.lpfch.org/nationalmodels/
- Peterson, S., et al. (2007). Quality care for special kids; Profiles of children with chronic conditions and disabilities. Mathematica Policy Research Inc. & U.S. Health Resources and Services Administration. Retrieved from: http://www.mathematica-mpr.com/publications/PDFs/qualitycareupdate4.pdf
- Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2010). Children with special health care needs: A profile of key issues facing CSHCN in California. Retrieved from: http://www.lpfch.org/specialneeds/
- Okumura, M., et al. (2009). Understanding factors associated with work loss for families caring for CSHCN. Pediatrics, 124(4), S393-S398. Retrieved from: http://pediatrics.aappublications.org/cgi/content/abstract/124/Supplement_4/S392
- Lucile Packard Foundation for Children’s Health. (2009). California's service system for children and youth with special health care needs:
Analysis and recommendations for a service system that works for children and families. Retrieved from: http://www.lpfch.org/californiaservicesystem/
- Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Children with Special Health Care Needs in California: A Profile of Key Issues
In 2009-10, about 1 in 4 (25.9%) children with special health care needs (CSHCN) in California had unmet medical care needs, and more than 1 in 3 (35.2%) had difficulty accessing community-based services. In addition, 33.9% of CSHCN in California had difficulty getting needed referrals to specialty care, which was significantly higher than the figure for all other states (22.2%).* However, the vast majority of California's CSHCN had a preventive medical visit in the past year (87.6%) and a usual source of health care (89.3%), according to 2009-10 data.
CSHCN with more complex health needs or who are low income, of color, or publicly insured are more likely
than other children to have challenges accessing quality health care.
For example, just 30.2% of youth with
more complex special health care needs in California received the services needed to support their transition to the adult health care system, compared to 49.3% for youth with less complex health needs.
* Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Children with Special Health Care Needs in California: A Profile of Key Issues