Family Well-being in MA
Background on Data
The survey, the National Survey of Children with Special Health Care Needs, was sponsored by the Maternal and Child Health Bureau and administered by the National Center for Health Statistics. The survey is a random digit dial telephone survey conducted from October 2000 to April 2002 that screened households for children under age 18 in all 50 states and the District of Columbia. Children with special health care needs (CSHCN) were identified using the CSHCN Screener, a 5-item parent survey-based tool that identifies children based on consequences of their condition, as opposed to their specific diagnosis. The Massachusetts sample includes 744 children with special health care needs, the New England sample includes 4,476 CSHCN and the national sample includes 38,886 CSHCN.
Two sets of analyses were conducted. First, we examined the financial impact on Massachusetts’ families with CSHCN. Second, based on input from the Family Participation Workgroup, we examined unmet health care and family service needs for CSHCN in Massachusetts and for a subset of CSHCN with a more severe condition. We further examined financial impact and unmet need as it relates to child and family characteristics and to the Maternal and Child Health Bureau’s key indicators of progress towards Healthy People 2010 national goal for service systems for CSHCN.
The Maternal and Child Health Bureau has set a national agenda for children with special health care needs that has been the foundation of state Title V programs. The agenda calls for the development of systems of care for children with special health care needs that are family-centered, community-based, coordinated and culturally competent. A national goal (Healthy People 2010) was set to increase the proportion of states that have these service systems in place. Six core outcomes have been identified to measure states’ progress towards this goal:
1. Families of CSHCN will partner in decision- making and will be satisfied with the services they receive.
2. CSHCN will receive coordinated ongoing comprehensive care within a medical home.
3. Families of CSHCN will have adequate private and/or public insurance to pay for the services they need.
4. Children will be screened early and continuously for special health care needs.
5. Community-based service systems will be organized so families can use them easily.
6. Youth with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence.
This study examined financial burden among families of CSHCN as it relates to 3 of the above outcomes (2, 3 and 5) and unmet need as it relates to 4 of the above outcomes (1, 2, 3 and 5). For more information on these outcomes visit http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm
