The second in a two-part series.
Among the more than 6 million American children estimated to suffer from a serious mental disorder are the cases that elude clear-and-quick diagnosis. These elusive diagnoses can happen when multiple conditions camouflage or overlap the traits of one another. And the parents of those youths can face years of dead ends, of drug trial-and-error, to relieve their children’s anxieties or compulsions, and limited insurance coverage for the steep cost.
Anne Grady is the mother of a son whose discontent was glaring before he left the hospital, and his condition continues as he nears age 12. But coping skills and techniques Grady learned over the years while doggedly seeking help for her son paid off. Those lessons are part of a new book called 52 Strategies for Life, Love & Work, a compilation of easy-to-apply strategies for improving every aspect of your personal and professional life regardless of the hand you’ve been dealt.
Grady specializes in what she dubs “personal and organizational transformation.” She bluntly, often mirthfully, shares how she managed to launch her career, become pregnant (and bedridden for most of her pregnancy), single-parent a high-needs child, and eventually craft a life and household that allowed her to pay the bills and get quality care for her son.
Just this morning, she said, while walking the dogs around the neighborhood before school, her son became frustrated when she told him that he could not pull off the berries of every bush along their route.
“He said, ‘I hate you, you stupid jerk!’ and people are walking by, obviously judging you, giving you that look,” Grady said.
But at least she’s found a diagnosis for his supreme irritability and hair-trigger fury, and the combination of 14 pills a day that medicate him seem to be working.
In general, our country still doesn’t view mental illness as a health condition that rightly falls under the same tent as medical care. Grady said she was often told that her son’s mental illness, while difficult, did not rise to the need for hospitalization. In order to prove the severity of his condition, Grady said she had to wait for his threats or outbursts, and, while keeping herself safe, manage to videotape them.
“What parent would be asked to come back later when their child’s cancer reached stage 4?” she asked rhetorically. “But you can take a blood test or an exam that proves cancer or diabetes.”
Here is Grady’s take for the overall problems and some tips for dealing with an elusive diagnosis and insurance company resistance:
- Psychiatrists and mental health professionals rarely take insurance because of all the bureaucratic BS. Even if you can file your own claim with the insurance company, the doctors are rarely in network.
- If you have a diagnosis of autism (or any other illness for that matter), there are a plethora of services and resources available and treatment is considered a medical necessity, meaning it is almost always covered. There is virtually no coverage for mental illness.
- A large percentage of ER visits are related to mental illness, yet there are no beds or places for these people to go, so they are discharged and can only afford medication and treatment by going to the ER.
- Seventy percent of the juvenile justice system kiddos have mental illness, yet in a given year only 20 percent are identified and receive treatment.
- You are turned away. You can’t receive treatment (and have insurance cover it) at a hospital or residential treatment center until the behavior is to the point that you can prove the child is a threat to himself or others. The “proof” you need depends on the treatment center and/or insurance company, but we had to provide video evidence of meltdowns, stacks of paperwork from multiple psychiatrists and specialists, and wait until a bed became available. Evan could have seriously hurt himself or others in that time period, but every treatment option has to be reactive.
- We have spent over $250,000 on treatment and care for Evan. If we made minimum wage, we would have financial support. But because we technically make too much money (regardless of the fact that we spend the large majority of it on Evan’s care), there is NO support. We are on every government list, but some are over 10 years long.
- Be your own (or your child’s) advocate. Do not assume doctors and especially the insurance company have your best interest at heart. This is a business and they are trying to make money.
- Find a case manager (get as high up the chain as possible) as your primary contact. In all of these cases, there is someone ultimately responsible for making decisions. You want that person to empathize and sympathize so they are willing to help you. I developed a relationship with Evan’s case manager, and she was able to buy him an additional two weeks of care (doctors said he needed another two months, but the insurance company denied it). Our out-of-pocket cost would have been over $500 per day and it would have crippled us.
- Do not take no for an answer. I was a momma bear and would not let down. They are parents, too. You just have to appeal to common sense, not common insurance practice. I told them stories about Evan, what I had tried to do for treatment, how desperate we were, etc.
- Do your homework. There are loopholes and support hidden under rocks. You just have to know how to find it. Of course, no one will talk about this, so you have to build relationships with other families in similar situations. For example, we just got $3,000 to use for Evan’s care from the school district. They certainly weren’t going to tell me it was available. I learned about it from another mother and then had to again prove that Evan was severe enough to need it.
- Find the right doctor. This is much easier said than done. Good pediatric psychiatrists are very hard to come by. Multiple doctors might all give a different diagnosis, but the coding of the diagnosis often determines the support available. For example, I was told that if Evan had a diagnosis of Asperger’s, he could receive free therapy treatments. We went to several doctors and got several diagnoses. We explained our situation and one doctor said, “Of course he could be on the Asperger spectrum.” That was enough to get the services.
For help and referrals, try the National Alliance for Mental Illness.
By: Nancy Wride