Thursday, May 1, 2014

How Family Caregivers can get the Most out of their Insurance Coverage

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Family caregivers are concerned not only with the worry if their loved one is getting the best medical care, but also the financial burden associated with it.  According to Families USA, 60% of all bankruptcies are due to medical debt.  Family caregivers need to know how they can maximize their insurance to lower their costs.   

Don’t take “NO” for an answer
Families have a right to appeal claims that are denied by insurance.  There are different ways to do this based on the type of plan.  All plans come with handbooks explaining this process, whether it’s a public or private plan.  Only 1/3 of families appeal a claim when it’s denied, but half of the time it’s turned around on the first try.  For private plans, it may be something as simple as sending the “explanation of benefits” on why it was denied, along with any missing information requested, and a doctor’s note of medical necessity.  Parents should keep copies of everything, send it certified/return receipt, and follow-up if needed since there may be a deadline on the appeal.  It may be a good idea to send a copy to your state insurance commissioner (see resources); even if the plan is “self-funded/self-insured” and is exempt from state regulation due to ERISA (Employee Retirement Income Security Act), these are the same plans that go for the Medicaid contracts in your state and they don’t want to look bad.  Again, there may be both internal and external appeals, and families need to check the process in their plan handbook. 

New Benefits under the Affordable Care Act
Besides not being able to drop plans due to illness or deny due to “preexisting condition”, there are now no lifetime caps on benefits and children can stay on a parent’s plan until age 26.  It should be easier for families to get mental health care due to the new federal parity law which requires equal treatment for mental and physical health as well as autism coverage under one of the essential health benefits of “behavioral health.”  Qualified health plans in the Marketplace also have to cover children’s dental and vision care.  Prevention and wellness care is at no charge.

What is Coordination of Benefits?
Families of children with special needs may have more than one insurance plan.  Children with disabilities may have private plans as well as public plans like Medicaid or Medicare.  The private plan usually pays first, and the public plan pays the rest.  But families still may have to remind doctors and pharmacies that they need to bill both so families don’t end up paying out-of-pocket.  Other helpful tips:

Ø  If a family has Medicaid as the second insurance but the provider doesn’t take Medicaid, the provider can call the HMO and ask what the process is to bill Medicaid “out-of-network” as the secondary.

Ø  If a family has Medicare and the doctor doesn’t take Medicare, the provider can send in his/her Medicare opt-out letter with the bill to the private insurance.  Families can also file Medicare claims in this manner.

There is a factsheet on how to get the different types of insurance and how to coordinate benefits at
Family caregivers need to get the most out their insurance which will help ease any financial strain on families.  Below are resources that can assist if families need more help.
The Arc
Families USA
Family Voices/Family-to-Family Health Information Centers
SHIP Counselors (Medicare)
State Departments of Insurance-National Association of Insurance Commissioners
Title V of the Maternal/Child Health Bureau

Remain Hopeful,



Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB




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