Health Care Access & Financing: Activities

Activities this grant year continue to focus on understanding how families, in which there is a child with a genetic condition, are impacted by health insurance in light of the Affordable Care Act (ACA). 

Results from the group's first survey informed development of a major policy brief entitled New England Children with Genetic Disorders and Health Reform; Information and Recommendations for Policymakers. The brief includes insights into  out-of-pocket costs, the impact on health and well-being, access issues, and the administrative burden of negotiating with insurance and/or Medicaid systems.

The brief was packaged in a compelling way for policy solutions, utilizing real family stories from GEMSS - Genetics Education Materials for School Success website, also a produce of the NEGC.



Activities last grant year were focused on understanding the family perspective on essential health benefits (EHBs) for children with genetic conditions.

  • A survey was developed to gather input from families affected by a child with a genetic condition. The survey used language corresponding to the ACA and provided easily understood examples. The survey asked if services were covered by the family'’s insurance (both public and private) in full, in part, or not at all.  
  • The survey was distributed to families in December 2012, through Family Voices/Parent Information Centers and condition-specific organizations in each New England state.  
  • The work group compiled responses. 
  • Additionally, the group looked at the broad picture, examining what we know from literature about the ACA and essential benefits in the New England states. The review of the ACA and essential benefits was conducted with a focus on the impact upon children with genetic conditions.