The burden of cost borne by families affected by Duchenne muscular dystrophy can be great. Understanding private 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

• Understanding Health Insurance Options: A Guide for People Living with Duchenne Muscular Dystrophy and their Caregivers
  Guide to understanding health insurance options

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.
• Duchenne Family Assistance Program
  This program is a partnership between Little Hercules Foundation and Team Joseph. Through their Duchenne Family Assistance Program, Little Hercules Foundation provides case management services to patients and caregivers who have been denied access to treatments, clinical care, equipment, and social services. Team Joseph provides financial assistance for families procuring necessary medical equipment, travel assistance for those who travel long distances for expert care or clinical trial screening/visits, and support to attend educational meetings and conferences for those wishing to better understand Duchenne, standards of care, and the therapeutic landscape.

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
• Centers for Medicaid and Medicare Services
  Individual state Medicaid Waiver and State Children’s Health Insurance Program links
• 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