Sorry, you need to enable JavaScript to visit this website.

Sign Up For Mailing List Button

Donate to Genetic Alliance

Disease Search Button

Insurance & Financial Assistance

Facebook icon
Twitter icon
LinkedIn icon

When we decided to try private therapy until the early intervention would start in the fall, I looked at both my and my husband's employee handbook for guidelines. Both carriers required a doctor's prescription, listed qualifications of the physical therapist, and supervision of the therapy by a physician. So following guidelines for both primary and secondary insurance, we started physical therapy. It wasn't until months of claims were submitted, that the insurance company sent denial letters. That's when I found out that only 1/3 of families appeal denied claims and insurance companies depend on people either not appealing or giving up, even though most of the time it's turned around on first appeal. But families must be persistent. Keep copies of everything and send it certified return receipt. We had the doctor who prescribed the therapy send a note saying it was medically necessary. Doctor's notes are golden and often all that is needed is a prescription; but if that isn't sufficient a note of "medically necessary" will usually resolve this. The insurance companies kept asking for additional information such as treatment and diagnosis codes, tax id, therapist license, etc. This went on for a year and a half, then they finally relented. Ironically, the following year my husband's insurer actually put an addendum in the employee handbook that they no long cover these types of therapies for children. Fortunately by that time our child was getting services through early intervention, and later related services under IDEA at school.

-Story from a parent advocate


Care Coordination Notebook: Financing and Managing Your Child’s Health Care- Partnership for People with Disabilities and Parent to Parent of Virginia

Girl standing in front of Supreme Court advocating for Health Insurance

Sarah advocates for health insurance coverage in front of the United States Supreme Court.

The Affordable Care Act: What Disability Advocates Need to Know- The Arc

FloridaHATS- FloridaHATS

Writing Winning Insurance Appeal Letters- The Oley Foundation

Health Care Advocacy Across the Lifespan: What Parents of Children with Disabilities Need to Know- Statewide Parent Advocacy Network of New Jersey (SPAN) 

A Lifetime of Advocacy: What Families and Individuals with Turner Syndrome Need to Know- Valerie A. Powers Smith, Esq., Turner Syndrome Foundation

Secondary Transition Guide- Pennsylvania Youth Leadership Network

A Greater Understanding Patients: How to Discuss the Costs of Healthcare Treatments With Your Provider- Patient Advocate Foundation

Guide To Community Services in Oklahoma for People with Disabilities and Their Families (Oklahoma)- Center for Learning and Leadership

Taking the Next Step: Life After High School- National Youth Leadership Network

Managed Care: Doing It Right- The National Advisory Board on Improving Health Care Services for Seniors and People with Disabilities (NAB)

Return to Advocacy ATLAS Homepage

Follow Us

Twitter icon
Facebook icon
LinkedIn icon
YouTube icon

4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.