Navigating Insurance & Appeals

The Healthcare Access and Financing, Medical Home and Education and Dissemination work groups of the NEGC developed resources for families and providers on how to appeal health care insurance claims denials. Links to external resources are also provided.

• Navigating the Health Insurance Appeals Process for Children with Genetic Conditions
  • ​3 Hints to Help You Navigate the Appeals Process
    1 page infographic for your office or waiting area, stressing the value of families and providers working collaboratively for the best outcomes.
  • Parent Guide
  • Contact list for New England
  • ​​Age Group:Child, Teen/Young Adult

Helpful links:

• Appeals: Appealing Funding Denials​
  From the Medical Home Portal, University of Utah
  Age Group:Child, Teen/Young Adult
   
• ​Children's Health Insurance
  ​HealthyChildren.org
  Age Group: Child

• Consumer Complaints Toolkit: Health Insurance Resources for Health Advocates, Health Providers and Enrollment Assisters
  ​From Community Catalyst, Boston (June 2016).
  Age Group: Child, Adult
   
• Family-to-Family Health Information Centers
  Family-to-Family Health Information Centers are family-led centers that provide free, confidential assistance to families raising children and youth with special health care needs/disabilities. Knowledgeable staff help navigate complex systems of care and connect with needed services and supports. They can help families understand insurance appeals and provide additional resources to help. Find the F2F in your state. 
  Age Group: Child, Teen/Young Adult

• Family Voices
  Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. 
  Age Group: Child, Teen/Young Adult
   
• How Families of Children with Special Needs Can File Insurance Complaints
  Family Voices (July 2016) ​(Also go to your state’s Family Voices organization, found through the national website)
  Age Group: Child

• Maneuvering Through the Maze, a Family Resource Guide for Families having Children with Special Health Care Needs and Disabilities. New Hampshire Family Voices

• Pathways to Reimbursement Success
  Cambrooke Therapeutics (includes several LMN for medical food, seizure disorder, PKU and other metabolic conditions)
  Age Group: All
   
• Rare Toolkit: Navigating Health Insurance
  From Global Genes,  one of the leading rare disease patient advocacy organizations in the world
  Age Group: Child, Teen /  young adult, adult