Both the focus groups and surveys demonstrated that families of children with special needs are under very significant stress. Pediatricians must become better equipped to identify and communicate more proactively with families of CYSHCN that are experiencing significant parent burden. Pediatricians and their staff also need to improve their knowledge of community resources and proactively make referrals to community services needed by families of CYSHCN.
We found that for families of CYSHCN, practice-based care coordination in the medical home led to increased satisfaction with the quality of care they received and a reduction of barriers to care. The practice-based care coordination model is utilized by a minority of State Title V agencies and should be considered as a potentially more effective model than the agency-based approach.
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