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Angie Rylands got off the phone and exhaled. After her son Joe’s* multiple hospital visits, suicide attempts, and encounters with the police, she had finally talked to someone who understood what her family was going through. Although she felt relieved to have found the Institute for Attachment and Child Development, she knew she couldn’t afford the treatment for her son. Angie’s predicament is far too common. Very few parents have the resources available to effectively help their children with reactive attachment disorder (RAD). Angie didn’t let that stop her, however.
Angie had only a Medicaid card for her children’s medical needs—one of the most common resources adoptive parents have for their children. Many parents find that Medicaid won’t cover the expenses for effective treatment for RAD, however. This is often true for parents with adoption subsidies and private insurance as well. Even parents who are financially secure quickly end up in debt due to the costs of medications, various therapies, and residential treatment centers (which are often ineffective anyhow) to help their children to overcome the effects of early trauma.
When parents cannot afford the support and expertise they need to help their children with RAD heal, children typically escalate and the chaos in their homes only gets worse. Children do not “outgrow” early trauma. After Joe’s third hospitalization, Angie knew this to be true. She was worried for the safety of her five sons, Joe included.
Angie began petitioning Medicaid to cover Joe’s treatment at the Institute for Attachment and Child Development. “I felt very strongly that this was life or death for my child,” said Angie. “This [treatment] was medically necessary.” After many phone calls and hours of paperwork, Angie finally succeeded in getting Medicaid to cover Joe’s treatment at the Institute for Attachment and Child Development.
Here are some tips from Angie about how to work with insurance providers to get effective treatment for reactive attachment disorder:
1. Documentation is CRITICAL!
I began keeping a journal to document my son’s behaviors as I tried to find patterns or consistent triggers that I could handle differently at home. This journal grew into my lifeline as I documented every single conversation I had with a professional (think teachers, police, counselors, nurses, doctors etc). Every phone call was written down with my recap of the items discussed. When my son was hospitalized, I documented every visit and phone call, every medication dosage change…you get the idea.
As my attempts to help our son varied, I found it helpful to document approaches and therapies that we’d tried. It is especially helpful to have a separate document where you list dates of service in hospitals, meds or therapies recommended by the staff there. This would later prove to be very helpful when speaking to insurance carriers and physicians.
You’d think the insurance company would have these records, but they conveniently don’t keep track. You should.
2. Don’t accept “no” for an answer.
It is your job as the parent to fight for your child. Be a bulldog. Don’t let a “no” rock your world. In fact, you should expect a no. Maybe more than one. Insurance companies, for a plethora of reasons, are going to deny your claim initially. Be prepared to appeal every negative decision. (This is where your documentation will come in very handy!) Expect that this will take some time and stay calm.
3. Enlist previous caregivers or medical professionals to advocate for our child’s needs.
Most professionals want to help your child. If treated with respect, they will often assist you in documenting what they see as your child’s primary needs, even if they come to realize that their care is not the best fit for your child. In our situation, we came to the conclusion, after two months in a traditional residential care facility, that our son was getting worse and not better. The psychiatrist who cared for him there was very open with me that their treatment model was insufficient for him. She not only supported my decision to discharge him, but also wrote a letter stating that the care model at the Institute for Attachment and Child Development (family-centered therapeutic foster care) was truly what he needed to get better. This letter was a key piece of documentation that the insurance company used as they weighed the merits of our request.
4. Call your ombudsman.
An ombudsman is an independent liaison between government-run insurance companies (Medicaid) and regular people. They can help you understand all the complicated jargon and know your rights. Click here to find an ombudsman in your area.
5. Identify and contact the decision-makers, if possible.
As you advocate for specialized care for a child with a mental health condition, expect that not every employee of your insurance company will have the knowledge to help you. Find the decision-makers as fast as you can. I reached out to Tim Scott, our amazing state senator, for help. His staff did not have any influence over whether or not our claim would be approved. However, they were able to get me in touch with the decision-makers at the insurance company. This helped me to expedite our request and likely saved me weeks, if not months, of searching for the right help.
Find out if the therapist or program you prefer can do a “single case agreement” with your insurance company if they don’t already work together. Research available and similar options in your state so that you are better prepared to speak to the benefits of your preferred program in comparison to others (those that they are more likely to cover). Don’t be afraid to advocate for a non-traditional model of treatment.
7. Don’t give up!
It’s frustrating to work with insurance companies. However, you’ll need to persist until you get the coverage your child needs.
8. Take good care of yourself.
You need to care for yourself in order to keep fighting. Dealing with insurance companies is almost as exhausting as raising your special needs child. It takes a toll on your emotions and resources. Don’t forget to take a break. Share the burden with your significant other, if possible. Get a massage…anything that helps you to relax and breath.
Angie admits that securing funding for effective treatment for children with RAD is extremely difficult. She continues to advocate, not only for her own family, but also for other families in her predicament. She knows how vital the right care is. “We shouldn’t have to fight so hard to keep these kids safe,” said Angie. “The practical ramifications of these children spiraling out of control at the age of 18 into their legal adulthood is a much bigger drain on society financially and in so many other ways than helping them heal to become productive, contributing members of society.”
*Child’s name changed to protect his identity