Each state has its own Medicaid policies and each insurance company provides different levels of coverage, though some strategies may work well in general. See if these links help:
- Find a booklet about the appeal process in New England and helpful links on our web page: Navigating Insuranc & Appeals.
- Letters of necessity may be needed for a successful appeal. Find sample letters and strategies to share wth clinicians, on our web page: Letters of Medical Necessity
- Complex Child - Insurance and Medicaid is a feature article in an online magazine.
- The New England Genetics Network has a variety of materials – GEMSS (genetics education materials for school success) – designed to give teachers, families, and healthcare providers common tools to address school-based issues.
- There’s also an Educators’ Resources link with more information for metabolic conditions.
- Children & Youth with Special Health Care Needs and Connecticut's Medical Home Initiative
- Massachusetts Division for Children & Youth with Special Health Needs – Programs and Services
- Maine Genetics Program
- NH Title V Program Services for Children with Special Health Care Needs
- RI Office of Special Needs
- Children with Special Health Needs (VT)
There are several very active peer-support groups in New England, many linked to national networks. They can help you nativigate the system and more.
This Reference Guide does a great job describing what different family-led organizations do and how they intersect. Once you've clicked on the link for NERGN, scroll down for state-specific contact information. Thanks to the National Genetics Education and Family Support Center for developing the guide!
- New England Consortium of Metabolic Programs
- The New England Connection for PKU and Allied Disorders
- Next Step, Inc.
- Rare New England