Each state has its own Medicaid policies and each insurance company provides different levels of coverage, though some strategies may work well in general.

• A booklet about the insurance appeal process: Navigating the Health Insurance Appeals Process for Children with Genetic Conditions (negenetics.org)

• Letters of necessity may be needed for a successful appeal. Find sample letters and strategies to share wth clinicians: Letters of Medical Necessity

• Complex Child – Insurance and Medicaid is a feature article in an online magazine.

• Infographic on Insurance Appeals: Navigating the Health Insurance Appeals Process for Children with Genetic Conditions (negenetics.org)

• Appeals: Appealing Funding Denials​
  From the Medical Home Portal, University of Utah
  Age Group:Child, Teen/Young Adult

• ​Children’s Health Insurance
  ​HealthyChildren.org

• Consumer Complaints Toolkit: Health Insurance Resources for Health Advocates, Health Providers and Enrollment Assisters
  ​From Community Catalyst, Boston (June 2016).

• 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.

• 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.

• 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)

• Rare Toolkit: Navigating Health Insurance
  From Global Genes,  one of the leading rare disease patient advocacy organizations in the world

• Implementing the Affordable Care Act in the NYMAC Region

• Affordable Care Act NYMAC Matrix

• Kaiser Family Foundation(link is external)  KFF (Kaiser Family Foundation) is a non-profit organization focusing on national health issues, as well as the U.S. role in global health policy. KFF develops and runs its own policy analysis, journalism and communications programs, sometimes in partnership with major news organizations.

• Catalyst Center(link is external)

• Commonwealth Fund(link is external)

• The Catalyst Center “Health Care Reform: The ACA and Children with Special Health Care Needs”(link is external)