On kidsdata.org, indicators related to children with special health care needs include national- and state-level data on demographics, the impact of conditions on children and their families, health insurance coverage, access to, and quality of health care and other services (1). See http://www.kidsdata.org/cshcn/ for a full list of indicators.
Kidsdata.org also provides the number and percent of children under 18 with major disabilities, as 1-year and 3-year estimates (2).
In addition, the number of public school students enrolled in special education by county and school district is available, as is the number and percent by disability and by race/ethnicity at the county level (3).
Finally, kidsdata.org offers the number and percent of active enrollees in the California Children's Services (CCS) program (i.e., enrollees with paid claims), by age group and county (4).
- These data come from the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health. On these surveys, 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.
-
These data come from the American Community Survey, in which children are classified as having disabilities if they have serious difficulties in one or more of the following areas: hearing, vision, cognitive ability (asked only of ages 5-17), ambulatory ability (asked of ages 5-17), self-care (asked of ages 5-17), or independent living (asked of ages 15-17).
-
Special education gives students with specific disabilities
access to a public education. Special education programs provide early
intervention services for disabled children from birth to age 3, early
childhood education from ages 3-5, and instruction in the least
restrictive environment up to age 22. According to the California Department of Education, children and youth ages 5-18 account for about 90% of the population enrolled in special education; children ages 0-4 and youth ages 19-22 account for about 10%.
- These data come from a report compiled by the Stanford University Center for Policy, Outcomes and Prevention. The CCS program helps to ensure access to essential health care services
for California children ages 0-21 with serious diseases. It is a joint
state/county program that provides medical case management and health
care service authorization to eligible children. For more information
and eligibility criteria, visit the CCS site.
CCS eligibility extends to children with chronic diseases as well as to
those with acute injuries; therefore, many, but not all, CCS enrollees
can be considered 'children with special health
care needs'.
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). The demographic data provided here can be useful for projecting needs and developing policies to ensure that all children with special health care needs reach their maximum health potential.
Nationally and in California, the majority of children with specific disabilities receive special education services; the most common condition among children in special education is learning disabilities (3). There are many forms of learning disabilities, which can affect speaking, reading, writing, thinking, and/or computing (4). Many of these conditions go unrecognized. Students with learning disabilities tend to have lower high school graduation and college enrollment rates, and, as adults, have higher rates of unemployment (4).
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.
- As cited on kidsdata.org, Special Tabulation by the State of California,
Department of Education, Special Education Division; Assessment,
Evaluation and Support. Special education enrollment, by disability: 2012. Retrieved from: http://www.kidsdata.org/data/topic/table/special-needs-education-enrollment-disability.aspx
- Cortiella, C. (2011). The state of learning disabilities: Facts, trends, and indicators. New York, NY: National Center for Learning Disabilities. Retrieved from: http://www.ncld.org/types-learning-disabilities/what-is-ld/state-of-learning-disabilities
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 for health care services
(3, 7), as well as ensuring adequate funding for special education services (9).
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
- Minow, M. L. (2001). Funding mechanisms in special education. National Center on Accessing the General Curriculum. Retrieved from: http://www.cast.org/publications/ncac/ncac_funding.html
An estimated 10.6% — approximately 1 million — California children under age 18 has a special
health care need.
According to 2009-10 data, the most commonly reported condition among
California children with special health care needs was allergies
(41.4%), followed by asthma (34.9%), attention deficit and
hyperactivity disorder (23.1%), and developmental delay (18.5%). In
addition, about 52% of California’s children with special health care needs had two or more chronic
conditions, and many of these children have very complex needs.
A smaller percentage of California children have major disabilities, 3.1% in 2011, meaning they have serious impairments in vision, hearing, walking, cognition, or self-care, according to the American Community Survey. Estimates of children with major disabilities vary widely at the community level.
Students with learning disabilities and speech or language impairments together comprise the majority of students in special education in California, about two-thirds of all special education students in 2012. The percentage of students enrolled in special education for autism grew at a particularly fast rate in recent years, increasing from 2.6% to 10.5% between 2002 and 2012. In fact, the percentage of students with autism in special education increased in all counties with available data in that same period.
In 2009, almost 150,000 children and youth were active enrollees in the California Children's Services (CCS)
program (i.e., they had at least one paid claim that fiscal year). This
equates to 4.9% of all children under age 1 and 1.1% of all children
and youth ages 1-21 in California. The percentages of active enrollees
varied at the county level, ranging from 2.0% to 14.2% for
children under age 1 and from 0.4% to 2.3% for children and youth ages
1-21.