Association of functional limitation with health care needs and experiences of children with special health care needs

OBJECTIVE. The goal was to evaluate whether having a functional limitation was associated with health care needs and experiences of children with special health care needs. METHODS. We used caregivers' responses in the National Survey of Children with Special Health Care Needs (2001). Functional limitation was categorized as severe, some, or no limitation. We performed analyses of the relationships of functional limitation to measures of health care needs and experiences. RESULTS. Children with special health care needs with severe functional limitation were more likely to have received specialized educational services, to have had physician visits, and to have needed health services, compared with those with no limitation. They had significantly greater odds of delayed care, unmet health care and care- coordination needs, referral problems, dissatisfaction, and difficulty using health services, compared with those without limitation. Caregivers of children with special health care needs with severe limitation were twice as likely as those with no limitation to report that providers did not spend enough time, listen carefully, provide needed information, and make family members partners in the child's care. Compared with children with special health care needs without limitation, those with severe limitation had worse health insurance experiences, in terms of insurance coverage, copayments, being able to see needed providers, and problems with health insurance. The impact on families (financial problems, need to provide home care, or need to stop or to cut work) of children with special health care needs with severe functional limitation was much greater than the impact on families of children with special health care needs without limitation. For most measures examined, results for some limitation were between those for severe limitation and no limitation. CONCLUSIONS. Functional limitation is significantly associated with the health care needs and experiences of children with special health care needs.