What You Need to Know About Insurance for Children with Down Syndrome

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Trisomy 21 Update

For families who have a child with Down syndrome, where you live determines your eligibility for government insurance. Laws in Pennsylvania and New Jersey are different; these differences are explained below.

No matter where your family lives, once your child is legally an adult at age 18, he or she is eligible to apply for Medicaid and Social Security Income (SSI) without taking parental income into account. In almost all cases, your child will qualify for both benefits at this time. You can submit the application as early as the young adult’s 18th birthday.

Eligibility in Pennsylvania

Children with disabilities are eligible to receive Medicaid (government) insurance, regardless of family income. Down syndrome is one of the diagnoses included in this category. This means that even if your child is denied SSI based on your family’s income, he or she can still receive Medicaid. This special insurance eligibility is called “PH95.” It is helpful to use this term if you are having any difficulties obtaining Medicaid for your child. Your child can have Medicaid insurance even if he or she is covered through a parent’s insurance as well. Having Medicaid is helpful as it often pays for things that private insurance does not, such as some types of medical equipment, additional therapies and diapers for children older than 3 years of age.

Once you have chosen a health management organization (HMO) — such as Keystone First or Aetna Better Health — it is helpful to call the member services number on the back of your card and speak with the Special Needs Unit. All HMOs in Pennsylvania have Special Needs Units that can help with coordinating medical appointments, finding local resources and dealing with other insurance concerns. The Special Needs Units have specific expertise in working with children with disabilities.

Eligibility in New Jersey

New Jersey’s law is different when it comes to providing Medicaid for children with disabilities. However, because of the Affordable Care Act and Medicaid Expansion, children without insurance living in middle-income families are now eligible for New Jersey Medicaid (sometimes for a small fee and/or copay). Visit NJ FamilyCare to view the current New Jersey Medicaid income guidelines. Usually, the child needs to be without insurance for three months before qualifying, but occasionally exceptions can be made. Call 1-800-701-0710 to speak with a health benefits coordinator to see about these exceptions.

Down syndrome and autism diagnosis

If your child has an additional diagnosis of autism, many private insurance companies are required to cover applied behavior analysis (ABA) services for children 21 years and younger. If your child has an autism diagnosis, it is recommended that you contact your insurance company to see if it covers this type of therapy.