Need for care

As reported in U.S. government statistics nearly 20% of all U.S. children have at least one special health care needs (MCHB, 2019).  About half of those have multiple needs. 


  • Children with special health care needs (CSHCN) are 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 or amount beyond that required by children generally” (McPherson et al., 1998). 
  • A Caregiver can be a parent, legal guardian, grandparent, etc. who provides care for a child with special needs that is above what is typically needed by children.  Caregivers not only have their typical role as parent, but must also provide for their child(ren)’s special health care needs, and as an advocate for those needs (Whitemore, 2017).
  • Respite is a short break for caregivers and their multiple roles.  The caregivers define what respite looks like for them.  The goal is that the caregiver can receive a short break from their caregiving duties and be assured that their child is under the supervision of a caring, safe, and competent care provider.