What does it mean to be a child with special healthcare/medical need?

The US Department of Health and Human Services 1 considers children with special healthcare/medical needs as children who “have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type beyond that required by children generally.” 2

These healthcare needs and/or medical issues include serious health conditions such as cancer, heart defects, muscular dystrophy, and cystic fibrosis. It also includes chronic conditions such as asthma and diabetes; congenital conditions such as cerebral palsy and dwarfism; and health threats such as food allergies and obesity, among other things.

If you are the parent, caregiver, or loved one of a child with special healthcare/medical needs, you are not alone. The National Survey of Children with Special Health Care needs, completed by the US Department of Health and Human Services in 2005/6, showed that 13.9 percent of U.S. children have special health care needs, and 21.8 percent of households with children include at least one child with a special healthcare need. 3

Children with special healthcare/medical needs and their families face a challenging journey; they may require extensive, thorough, and sometimes invasive medical testing. They face long hospital stays, and may require expensive equipment and accommodations for disabilities. Their families have to deal with frequent crises, uncertainty, worry, and emotional and financial stress. These families may have to make decisions which they do not feel equipped to handle, and face conflicting theories regarding treatments, medications, and diagnoses. The wealth of information surrounding children with special healthcare/medical needs can sometimes be overwhelming.

The staff of M&L Special Needs Planning understands what you are going through, and we are available to help you. If you need helping planning for the future of your child with special healthcare/medical needs, please contact us. We would love to hear from you.

Special Healthcare/Medical Needs Resources:

Child and Adolescent Health Measurement Initiative (CAHMI)
This website contains a wealth of information relevant to children with special healthcare needs, including a Data Resource Center, which contains information gathered from parents and children regarding medical care for special healthcare/medical needs.

National Survey of Children With Special Health Care Needs:
In 2005/6 the US Department of Health and human Services administered a survey to gather information and statistics regarding children and families of children with special healthcare/medical needs.

Children’s Health Campaign
This Washington, D.C. based, diverse group of organizations represent health care providers, educators, parents, advocates, and others, all of whom share a commitment to our nation’s children. This website has a number of different resources, including a .pdf (http://www.childrenshealthcampaign.org/assets/pdf/Children-with-Special-Needs.PDF) which contains a number of pertinent facts and statistics relevant to children with special healthcare/medical needs.

 

Footnotes

1 McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, Strickland B. A new definition of children with special health care needs. Pediatrics, 102(1):137–140, 1998.
2 US Department of Health and Human Services, http://mchb.hrsa.gov/cshcn05/
3 US Department of Health and Human Services, http://mchb.hrsa.gov/cshcn05/