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 - 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. - 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
Looking for state-specific resources? Check out our state-specific page
What resources would you like to add or update?
Email your suggestions to resources@parentprojectmd.org!
While Parent Project Muscular Dystrophy (PPMD) strives to make the information on this website as timely and accurate as possible, PPMD makes no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site, and expressly disclaims liability for errors and omissions in the contents of this site. Reference in this site does not constitute endorsement or recommendation by PPMD. Click here to review PPMD’s policy on corporate support.
