The burden of cost borne by families affected by Duchenne muscular dystrophy can be great. Understanding insurance coverage can help reduce the financial costs. Choosing the best plan to fit your family’s needs and learning what is covered and to what extent are first steps in the process. Additional areas of interest include the process for appeals such as challenging denials and mediation and state consumer protection agencies.

Understanding Health Insurance Options

• Health Insurance Basics
  Key health insurance concepts explained
• Triage Cancer®
  Triage Cancer®is a national, nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources.  Many of these resources offer clear, concise information about commercial, state, and federal health insurance.  Fact sheets are available for choosing a health insurance policy to appealing a denial of coverage.  Developed for people affected by cancer, their resources are useful for people affected by Duchenne and Becker muscular dystrophy.

Assistance with Navigating Insurance

• PPMD’s Insurance Access and Coverage Center
  PPMD has assembled resources that will help families and medical providers at each stage of the healthcare access process. Included in our Insurance Access and Coverage Center are resources aimed at guiding you through this complex process – complete with sample letters and links to relevant publications and other resources.
• Little Hercules Foundation
  Little Hercules Foundation provides case management services to patients and caregivers who have been denied access to approved therapies, have questions, or need help navigating coverage concerns.
• Duchenne Family Assistance Program
  This program, managed by Team Joseph, aims to provide financial assistance for families accessing necessary medical equipment, home modifications, travel assistance to clinic appointments, vehicle modifications and more.

Private Health Insurance

• Consumer Reports
  Guide to understanding private health insurance plans and terms
• Health Insurance Plan Finder
  HealthCare.gov’s web-tool to find a private health plan
• Private Health Insurance Plans and Prices
  Web-tool from HealthCare.gov to help view health plan options

Public Health Insurance

• Advocator Group
  Nationwide organization dedicated to helping individuals apply for and obtain Social Security benefits
• Healthcare.gov
  Medicaid and the Children’s Health Insurance Program (CHIP) information and application.
• Coverage Options for People with Disabilities
  Blog post from HealthCare.gov outlining health insurance options for people with disabilities
• Kid’s Waivers
  Source for children’s Medicaid Waiver program
• SSI Child Disability Starter Kit
  Factsheet and Checklist from the Social Security Administration
• SSI Adult Disability Starter Kit
  Factsheet and Checklist from the Social Security Administration
• Social Security Administration’s Benefits Eligibility Screening Tool (BEST)
  The BEST tool helps you find out if you could get benefits that Social Security administers. Based on your answers to questions, this tool will list benefits for which you might be eligible and tell you more information about how to qualify and apply.
• Social Security Administration Red Book
  A summary guide to employment supports for persons with disabilities under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs
• Social Security definition of disability —Musculoskeletal disorders page
  Used as a basis to determine eligibility for state insurance benefits
• Social Security definition of disability —Childhood Listings
  Used as a basis to determine eligibility for state insurance benefits
• Understanding Supplemental Security Income Appeals Process
  Information from the Social Security Administration