Summary:

Demographics of Children with Special Needs

Spotlight on Key Indicators: Demographics of Children with Special Needs
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Learn More About Demographics of Children with Special Needs

Asthma
Bullying and Harassment at School
Demographics
Demographics of Children with Special Needs
Access to Services for Children with Special Health Care Needs (State-Level Data)
Insurance Coverage for Children with Special Health Care Needs (State-Level Data)
Impact of Special Health Care Needs on Children & Families (State-Level Data)
Quality of Care for Children with Special Health Care Needs (State-Level Data)
Low Birthweight and Preterm Births
Weight
Why This Topic Is Important
More than 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:

1.  Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Retrieved from: Children with Special Health Care Needs in California: A Profile of Key Issues

2.  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.

3.  As cited on kidsdata.org, Special education enrollment, by disability. (2013). Special Tabulation by the State of California, Department of Education, Special Education Division; Assessment, Evaluation and Support.

4.  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

How Children Are Faring
An estimated 15% — approximately 1.4 million — California children under age 18 have a special health care need. Commonly reported conditions among California children with special health care needs include allergies, asthma, attention deficit and hyperactivity disorder, and developmental delay. More than half of California’s children with special health care needs have two or more chronic conditions, and many of these children have very complex needs. In 2012, almost 130,000 such children and youth were active enrollees in the California Children's Services (CCS) program (i.e., they were enrolled for at least 6 months with an eligible CCS diagnosis).

A smaller percentage of California children have major disabilities, 3.1% according to 2010-12 data, meaning they have serious impairments in vision, hearing, walking, cognition, or self-care, according to the American Community Survey. It is estimated that 2.1% of uninsured children in California had one or more disabilities in 2010-12. 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 2013. The percentage of students enrolled in special education for autism grew at a particularly fast rate in recent years, increasing from 2.2% to 10.4% between 2002 and 2013. In fact, the percentage of students with autism in special education increased in all counties with available data in that same period.
Policy Implications
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:

1.  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/

2.  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.

3.  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/

4.  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

5.  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/

6.  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

7.  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/

8.  Lucile Packard Foundation for Children’s Health & Child and Adolescent Health Measurement Initiative. (2013). Retrieved from: Children with Special Health Care Needs in California: A Profile of Key Issues

9.  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

Websites with Related Information
Key Reports
County/Regional Reports