Angie’s interview series:
Angie’s interview series:
Click above to watch interview. This video is the last of a series. To catch up, please click here.
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
Please click on the image above to watch Angie’s interview. This is the third segment of the series. To catch up, please click here.
Angie was exhausted. As a widow with five sons—one on the moderate to severe end of the reactive attachment disorder spectrum—she was up most of the night to keep her kids safe. Angie watched the cameras in her home diligently, making sure *Joe didn’t hurt himself or her other four boys. She didn’t know what else to do at the time—no one seemed to be able to help her, particularly the professionals she turned to for assistance.
When Joe was hospitalized for the third time, Angie knew she couldn’t have him back in the home and keep her family safe. She knew he’d return from the hospital just as destructive as when he had left. The hospital was a place for temporary safekeeping, not real treatment. “I realized that there are so many opportunities along the care path…where kids [with reactive attachment disorder] are mislabeled, misdiagnosed, highly misunderstood, and that inappropriate treatment can cause further damage,” said Angie.
Where the lack of knowledge about reactive attachment disorder lies
Angie’s experience as a parent of a child with reactive attachment disorder (RAD) is common, unfortunately. Parents simply don’t have the resources required to help their children with RAD. There’s “a severe lack of qualified professionals,” said Angie. Many clinicians struggle to diagnose and work with clients with early trauma backgrounds. Much of the problem stems from the lack of information provided to graduate students studying to become clinicians. Many professors skim over the topic of RAD within the context of larger topics. As a result, clinicians often have limited information about RAD from graduate school and don’t have adequate knowledge to diagnose the disorder in practice.
To make matters worse, the standard resource in which clinicians rely upon—The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) published by the American Psychiatric Association—also lacks sufficient information. The symptoms of RAD in the DSM-5 aren’t comprehensive. After clinicians refer to the DSM-5, they often miss common red flags from clients with RAD or misdiagnose the disorder for something else, such as attention-deficit hyperactivity disorder.
Even when clinicians do recognize and diagnose a child with RAD, many have trouble working with such clients effectively. Given the nature of their disorder, children with RAD often manipulate their clinicians and blame their parents for all of their problems. Many clinicians mistake parents as the sole culprit of their children’s struggles and therefore miss addressing core issues. In the end, many clinicians cultivate further problems within families and make attachment even more difficult.
How to find (not teach) good clinicians
Like many other parents, Angie spent a lot of time attempting to educate the professionals tasked with helping her child—an overwhelming, frustrating, and time-consuming task. Like many parents, she felt bewildered by the lack of knowledge about RAD on behalf of the clinicians who cared for her son. “As a parent [of a child with reactive attachment disorder], you’re desperate for a professional to look at you and say, ‘I get it.’”
The clinicians who are able to make real differences for families battling RAD have a true passion for the field. Qualified therapists for children with RAD are often clinicians who—
When parents find a qualified RAD clinician, they don’t have to teach them anything. Good RAD clinicians stand beside, support, and educate emotionally healthy parents—as it should be. (Click here for 6 questions to find a qualified therapist for your child with reactive attachment disorder).
“Finally, someone understands.”
One day, Angie finally had the conversation she’d longed for with someone who finally “got it”.
When Angie called the Institute for Attachment and Child Development (IACD) and spoke with Executive Director Forrest Lien, she felt heard and understood for the first time in her journey to help her son. “I’ll never forget how that felt physically, to exhale and say, ‘Finally. Somebody understands where my child’s trauma is coming from and understands a different way to approach it.’”
Angie began filling out the extensive IACD intake packet after her conversation with Forrest, even before she had the financial resources to pay for the program. “How in the world is a widow with five kids on Medicaid ever going to afford to give my child the best treatment options? There was no question that I didn’t have the resources at my disposal,” said Angie. Yet, she felt compelled to move forward.
After reviewing Angie’s extensive intake packet for several days, Forrest called Angie back. “I really believe we can help him,” he said. Angie sighed with relief and then began tackling the next battle so many parents of kids with RAD face—affording effective treatment.
*name changed to protect identity
As a newly married couple, Angie and Tom didn’t plan to have children. “God had very different plans for us, thankfully,” said Angie. Today, Angie is a widow with five boys—one biological and four adopted sons. Their family journey has been difficult, to say the least.
When Angie found out her husband had been diagnosed with cancer and only had five more weeks to live, it was obviously devastating for their family. For one of their sons in particular, the diagnosis was particularly troublesome. Her son Joe* had just begun to bond to Tom—a monumental task for a child who’d been abused and neglected for years before Tom and Angie had adopted him.
Tom’s death created a downward spiral for Joe from which Angie was afraid he’d never recover. “It was like looking at the same streetwise, need-nobody kid that we picked up in China.” All of the progress and attachment Joe seemed to have made in the three years he lived with the Rylands seemed to have been lost. That year, Joe ran away from home, threatened suicide, jumped out of a second-story window with a knife, had numerous run-ins with police, and had to go to an acute care hospital several times. “I began to realize that we had the perfect storm of trauma, loss, abuse, teenage rebellion, and tremendous grief,” said Angie. “And I wasn’t able to fix any of it.”
Angie is right—there’s no quick fix for the aftermath of trauma. It doesn’t just go away. Children who have been abused and neglected have access to triggers their whole lives. People spend lifetimes working through early trauma.
As little humans, our brains work hard to avoid conflict and pain and to feel joy and relief. The longer the brain practices pain avoidance, the longer it takes for the brain to learn healthier ways to deal with conflict. Therefore, our brains get hardwired for how to navigate relationships early on—either in healthy or non-healthy ways.
Here’s the good news, however—people can also learn to manage their PTSD triggers in healthier ways. It is possible for kids with RAD to grow up to have meaningful relationships with friends and family members with the right help.
Parents can’t “fix” RAD but here’s what they can do:
1. Don’t take behaviors personally. Children with RAD aren’t doing what they do as a personal attack against their parents, although it can certainly feel that way. They are simply relying on primal survival mechanisms they learned early on to push people away and stay safe. To separate the disorder from the child will help you to stay calm and, therefore, to allow your child to feel safer with you.
2. Attain a psychiatric evaluation for your child. Adults who abuse and neglect children often do so as a result of their own mental illnesses (read more here). Thus, abused and neglected children typically carry an unfortunate combination of mental illnesses from their biological parents (“nature”) and attachment disorders due to their early trauma (“nurture”). A child can’t begin to efficiently work on attachment when he’s in the midst of battling his mental illness.
3. Get help for your child from highly specialized family attachment therapists. Just as you didn’t cause or create your child’s disorder, you can’t fix RAD—love is not enough. Family therapy can help foster connections.
4. Get help for yourself. The chaos, stresses, and emotional upheaval of raising children with RAD often result in parents having PTSD too. Those raising children with RAD need to get the professional help and self-care they need in order to effectively parent their children.
5. Have realistic expectations. Look at the child through the lens of mental illness. Children with RAD are different from other children without trauma but that doesn’t mean they can’t heal. Your child’s healing may look different from what you once imagined. For example, she may not want you to hold and kiss her but may let you brush her hair or sit on the couch with you.
When children are able to let down their guards and learn that healthy adults will keep them safe through tight structure, they can learn to trust and connect. This is far from easy. However, attachments are possible with the help of highly specialized attachment therapists and lots of work, patience, and time.
*name changed to protect identity
Most people in the general population have never heard the term “reactive attachment disorder” (RAD). For those who have heard the term, they often have a fuzzy idea of its meaning. What’s left are people who understand the concept but often have all sorts of misconceptions about what makes the disorder better or worse. Only a minority of people have a truly thorough grasp on what reactive attachment disorder is and what can be done. When misinformed people offer their advice to those raising children with RAD, it often creates more harm than good.
Many people have good intentions when they give advice or try their best to support those raising children with RAD. Unfortunately, those people often leave parents feeling more misunderstood, judged, and overwhelmed. Given that parents already feel exhausted, this unfounded advice is the last thing they need. The best means to overcome this common problem is education, education, education. Please read below and join our mission of advocacy.
Misconception #1 – “If neglect and abuse “broke” a child then love will “fix” it.”
Those raising children with RAD didn’t cause or create their children’s early trauma, nor can they “fix” it with love alone. Children who were abused or neglected at early ages don’t trust caretakers. They will push away the people who try to get the closest to them at all costs. For them, it’s survival. It’s the very premise of their disorder – they reject the very thing they need the most.
Misconception #2 – “It’s a phase that will pass.”
Children with RAD can look similar to toddlers. They are often demanding, want things on their terms, and throw tantrums if they don’t get what they want. Such behavior is developmentally appropriate for toddlers. For children overcoming early trauma, however, such behaviors are symptoms of their disorder. They didn’t get their needs met appropriately as toddlers and are “stuck” with toddler-like minds as a result. They don’t outgrow it with age. If they don’t get the help they need early on, they often grow into adults with the mentality of toddlers and have cluster B personality disorders.
Misconception #3 – “Your child just needs a safe and stable home with good old-fashioned morals, traditions, and parenting. He’ll settle into your family with time.”
Yes, stable and safe home lives are important for all children. Such environments, however, don’t erase all of the unsafe and unpredictable situations children experienced early on. Children with RAD learned to rely only upon themselves for safety and to seek control at all costs at very young ages. Therefore, they sabotage healthy circumstances and create chaos in their homes to feel safe and in control. Time doesn’t ease their instinctual survival mechanisms.
Misconception #4 – “I know a good therapist who really helped my neighbor/child/nephew/etc. She’ll help your child too.”
There are plenty of good therapists who do a world of good for various people. Children with RAD, however, need very specific attachment therapists who are highly skilled at working with such clients. Depending on the severity of the child’s disorder, he may actually need even more than a good out-patient attachment therapist. Good attachment therapists know when to refer clients for more comprehensive help.
If you’re a parent, keep persisting and educate those who will listen. For those who don’t and continue to point fingers at you, let it go. You’ll likely never change their minds. Reserve your energy to find people who will support you.
If you’re someone supporting those raising children with RAD, thank you for reading this all the way to the end. It’s a sign that you’re truly committed to learning more and effectively supporting them. Keep it up. The more people learn about RAD, the more support families battling early trauma can find.
Here’s an infographic to address what doesn’t “fix” reactive attachment disorder for you to share via social media (just scroll down and click “share” on the lower left corner and the social icons will appear on the image). If you’re a blogger, feel free to grab the HTML code below the infographic to share it on your site. Thank you for your advocacy!
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