Tag Archives: insurance

Phone calls, phantom panels and advocacy

May 7th, 2017

The sign on the door said “closed” but did not explain. Further investigation revealed three clinics under the same management were closed by the court at a bankruptcy hearing. As any parent of a child with mental health problems knows, finding a child psychiatrist or clinical nurse is not an easy task. The need for a new therapist as well makes the task even more daunting.  

Cheryl started exactly where she was supposed to start, with a call to their insurance company. “Let us do a search” said the representative. Unfortunately the names they gave her were dead ends due to the doctor not accepting new patients, no longer working there, etc. So when she called the insurance company back with that information they said again “Let us do a search.” This process was repeated more times than Cheryl could count. With each search the options would be further away from her home.  She told the customer service representative “As long as I don’t have to hop a plane, I’m fine.” Still no luck. The insurance company’s list of providers seemed to be what is sometimes referred to as a “phantom panel,” names on a list that are not connected to an actual, available doctor or provider.

Six months after the clinic closed, Cheryl’s son still did not have services and his pediatrician said she was no longer comfortable prescribing his medications. The insurance company was not budging in expanding their panel because they said their panel was big enough. What had become an exercise in futility was fast becoming an emergency.

Cheryl reached out to me for support and guidance. First, I referred Cheryl to the local Family Resource Center. I knew they had the ability to do an expedited referral to an area clinic that was not in her network. Then one morning, coffee in hand, we sat at her kitchen table and called her insurance company. When they told Cheryl they would do another search, I got on the phone. I explained who I was and that Cheryl’s son needed an out of network provider approved. We explained that this had been going on for six months, that Cheryl had done her due diligence by calling all the names provided to her and that no one was available. I was able to explain the larger context:- that three clinics had closed leaving lots of people without services and a limited pool of potential providers more stressed than before. I also explained this child was a DMH client with serious mental health concerns and numerous hospitalizations. That he had not had a hospitalization in a couple of years probably at least in part due to the careful combination of services that he had been receiving. Further, that he had recently been showing signs of decline.

I then said receiving comprehensive mental health treatment was in fact medically necessary and that it was obvious that their in-network panel was not sufficient, at least not in this area at this time. I requested an out of network level of benefits be authorized. The representative was very receptive and took the necessary steps that resulted in a “single case agreement” being approved.

Parents often comment about how hard it can be to navigate through this confusing system. So often they say “I feel bad for people who don’t have the support.”  Cheryl says “I just kept asking for help but– I didn’t know all the right words to use.” This was coming from a parent who is a great advocate for her child. During the previous 6 months she talked to DMH, called doctors who were not on the list, tracked down the old doctor for advice and even talked to the newspapers, still she needed support.

Cheryl called me recently and gave me some news. The psychiatrist her son has been seeing now for over a year is leaving the clinic and they have not been able to find a replacement. They are recommending she start looking elsewhere. After telling me and the DMH worker she started where she knew she had to start, the insurance company. Once again she made that call.  “Let us do a search,” said the representative.

Nancy Collier is a Family Support Specialist in the Lowell Area. She was involved in advocating for mental health parity legislation in Massachusetts.

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What’s in my wallet? Not much after mental health costs.

December 27th, 2016

My ex-husband and I divorced when my sons were 8 and 5 years old.  My 8 year old had already been through three psychiatric hospitalizations, was in regular therapy and routinely threatened to hurt himself as well as his brother.  Unsurprisingly, his brother was in therapy too.  I thought I was smart; as part of the divorce negotiations we set aside $15,000 to cover co-payments and other costs not covered by our very good insurance.  Naively, I thought it would last for many years.  Instead, we blew through that amount in less than 18 months.  So much for lasting.

This is the part of mental health care we don’t talk about enough:  the high cost of paying for it even when you have good insurance.  In the December 2016 issue, Money Magazine takes this topic on and points out, “A mental health challenge can strike deeply at a family’s financial well-being.”  The article goes on to point out that “patients bear 16% of the total costs of mental health treatment, the highest portion of any common illness, including high blood pressure and diabetes.”  Let’s get real here, much of the time, it’s the family taking on the costs.

Many of us have figured out how to make it paycheck to paycheck, maybe even with some extras like taking the family to the movies, or going on a vacation or buying little extras when they go on sale.  But the costs for co-pays, medications and other things not covered by insurance often make that impossible.

Like many parents whose children have mental health needs, at one point I was shouldering the co-payment for three visits per week (both sons and my own) and very high co-payments for four medications each month (because the ones that had been around long enough for there to be a generic version simply weren’t effective).  Like many children and young adults, my son was on several medications targeted to different concerns – anxiety, cycling moods, insomnia, inattention and outbursts. Each medication came with a high price.

My son also had to try medications we were sure wouldn’t work because our insurance had a policy of “failing up.”   He had to be on the cheaper, ineffective medication for two weeks to prove it was a no-go.  That’s two weeks of slowly increasing the dosage, deciding it was a bust, then weaning him off.  This might make financial sense, but it’s an awful way to zoom in on good care. I was gambling that the new medications would work – and was therefore willing to cough up the money.  I am not alone.  Just last month a parent emailed that she had been paying more than $900 per month for her son’s medications – and that was the part insurance didn’t cover.  She added that she had two other children and one was beginning to show signs of a mental health challenge.  She didn’t know where the money was going to come from.

Medicaid (MassHealth) often has better mental health coverage than commercial insurance, paying for more kinds of care and at a lower cost.  But there are still those “other costs,” the ones parents share in story after story.  One mother told me that she had bought 16 remote controls in 6 weeks.  When her son had a meltdown, she said, he threw them and damaged them. If she or her other child wanted to watch television, she had to replace them. He often threw them at lamps, so she was making do with overhead lights. Other parents report that there are holes punched in walls – it cost what to repair that?—in lots of homes.  Until my son was in middle school, he chewed through t-shirts at a rapid clip.  One fall, I bought 15 for the school year and they were all shredded by November.  It can add up to hundreds of dollars, dollars that used to go for family movie night.

Money Magazine also reports that insurance claims for mental health services are denied at a high rate.  Many families pull money out of other places to fund what insurance refuses to pay.  (Yes, they know that they can appeal, but often don’t have the extra wherewithal to take it on.)  One dad told me that his daughter was passively suicidal. He explained that, “She would deliberately walk in front of moving cars unless stopped or would lie down in the street and beg cars to run over her.”  His insurance refused to pay for a neuropsychological evaluation, which he (and the therapist) believed was needed.  “The good news, he told me, “Is that I just received a small inheritance from an aunt.”  He used that money to pay for the evaluation and later for a therapeutic school.  Unfortunately, the money ran out before she stopped needing care.

Not everyone thinks that mental health problems can be life threatening, but they often are.  When your child talks about death or not wanting to live, parents will raid that college fund, go into credit card debt and blow the family budget.  But sometimes, we try and stretch the dollars by spacing out the therapy visits, having treatment breaks or forgoing care for ourselves, even when we need it badly.  This is a stressful job, caring for a child with mental health needs, and can leave even the healthiest of us feeling depleted and enormously stressed.  The choice is between what we can afford and what we need.

What’s harder to measure is the impact on a parent’s earnings.  I worked part time for many years so I could go to countless school meetings, respond to emergencies and drive my son to therapy and other appointments.  Parents turn down promotions, switch to jobs that are more accommodating for employees with erratic home demands and learn the ins and outs of the Family and Medical Leave Act. A great many carve slices out of their work life to accommodate the demands of raising a child with mental health challenges.  Many times, things improve and parents are back on their chosen career track.  But the lost earnings have a long term impact.

There’s a growing recognition of the financial impact of raising a child with mental health challenges, often through young adulthood.  It’s not the first thing parents talk about when they tell their story, but it’s a universal experience.  The multiple co-payments, the high costs of psychotropic medications, the extra costs (like the several dozens of t-shirts I bought each year) all have their impact financially and emotionally.  We all know that someone has to pay, but can we figure out a way to make this work better?

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Bucking Conventional Wisdom in Mental Health

February 4th, 2015

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.

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We don’t tell you and here’s why

December 19th, 2012

The best way to get help for your child with mental health issues is to talk about what’s going on.  But most of us don’t, especially not at first.  Adam Lanza’s mother, Nancy, was reportedly quiet about his problems.  She was happy to talk about gardening, the Red Sox and her hobbies.  But she was quiet (publicly at least) about her son.  I have been, too.  We learn to be.

Even among parents who have kids with mental health problems, many cringe at the idea of exposure.  Liza Long’s stunning post,” I Am Adam Lanza’s Mother”, has prompted many parents to worry that she has exposed her 13 year old son to public scrutiny and taken a terrible risk.  Other parents pour out their own stories, feeling the risk is nothing compared to the pain of dealing with mental illness all alone.  I have been both kinds of parents – the one who keeps quiet and the one who shares her child’s story.

When my son was in elementary school, he was sometimes violent, explosive and unpredictable.  His mind, his focus and his mood would shift and nothing could interrupt the explosion.  Believe me, I tried.  All I could do was send his younger brother to his “safe spot” and manage things the best I could. For reasons none of us understood, his brother was often the target.  I worried for years that I would get a call that the state had removed my younger son because his older brother broke his arm or hurt him grievously.  I went to all the best experts who speculated that maybe he was angry because his brother was “normal.”  Why then, did he attack me too? And why did he also harm himself?

No one was ever sure about the why of it and we learned to live with the mystery and uncertainty.   When he was a little older, my son was able to tell me that every day he woke up feeling emotional pain and most days it was simply horrible.  When he exploded or when he hurt himself, it was like bursting a balloon, he said.  The pain went away for a while.   As he grew older, he hurt himself more and others less.  He reasoned that it was morally a better thing to do.  As his mother, I was still anguished.

When this first began, I told other mothers about it.  They were the parents of his friends and had known him since he was a baby.  Some of them would try to make me feel better.  “All brothers fight” they’d say, “Yours are just more intense.”  Some would look at me with horror or, worse yet, tell me to try things that I’d done long ago and found pretty worthless.  It was clear that they thought it was either my skills or persistence that needed shoring up.  I learned to avoid these discussions and got pretty good at deflecting questions. I learned to be quiet.

It isn’t just friends you are careful with. It’s your child’s teachers, his pediatrician and many others in his life.  We all live in a society where the stigma around mental illness can stop us in our tracks.   It’s far more serious than a lack of understanding. People repeat things to you that cut you to the quick and you learn not to tell them what you are going through.  Instead,  you talk about the Red Sox and gardening.

Then we turn to the mental health professionals, who we think, have seen all of this before.  We learn once again, that we are often on our own. Insurance pays only for short visits with lots of paperwork requirements.  There is  a shortage of mental health professionals with expertise on the most “serious” kids.  Parents like me are told, “I’ve done all I can for your child” and we observe he is not much better. We learn to manage the crises, lower our expectations of help and keep going because we know the burden falls on us in a way that would be unthinkable with another kind of illness.  I’ve read that Adam Lanza’s mother found that only she could defuse his crises. I’m sure that’s what she did until she couldn’t any more.

Finally, if we are lucky, we find other parents like us.  For many it’s both difficult and a relief to say my child is out of control or hurts himself or can’t seem to succeed.   But this time the other person says, “Yes, I know.  It’s like that at my house, too.”  We share, we cry, we laugh.  We applaud each others’ successes and commiserate over the failures.  Most of all we brainstorm, we point each other in the right direction and we slowly make progress.  And we are not quiet.  At least not until we leave the room.

After a profound tragedy such as the shooting in Newtown, Connecticut, talk turns to ways to identify the next Adam Lanza. To do that, we need to be able to talk about our children and our families and receive back compassion, understanding and good advice.  Until that happens, many of us will stay quiet.

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Growing up on medication

April 30th, 2012

Most parents know that the topic of psychotropic medication is charged with emotion.  Everyone from your friends to the anchor on the evening news seems to have not just an opinion, but a judgment.  This month a new book, Dosed: The Medication Generation Grows Up hit the bookstores.  Kaitlin Bell Barnett, the author, argues that American society needs to start listening to the people with the most credibility — the generation who grew up taking these medications.  She says we need “to stop bickering about whether or not kids were “overmedicated” and should, instead, listen to the people best positioned to comment on the subject – the generation of young adults now in their 20s and 30s who spent their formative years taking the controversial drugs in question.”

For her book, Ms. Barnett interviewed several young people in their 20s and 30s.  She tells their stories and explores some of the issues they face, including the impact of medication on a developing child’s sense of self and the toll taken by medication trials and side effects.  Some felt they had little input into the process of deciding to use medication or weren’t told why they were being given a particular pill.  Some grew up to reject medications while others continued taking them.  There is no single experience and there is no consensus.  However, there is a strong, compelling voice added to the debate whether the benefits of medication outweigh the negatives.

Several of the points made in Dosed reminded me of the 2008 PPAL study on psychotropic medication.  While we were going to survey only parents on this topic, we were also able to survey almost 70 youth and hold three youth focus groups.  These young people were 12 to 19 years old, younger than the group interviewed by Ms. Barnett.  But some of their worries about side effects and frustration with unclear information were very similar.  Parents who were surveyed also reported that their insurance was more likely to cover med checks (76%) than therapy visits (53%).  Ms. Barnett also makes this point.  She says that Medicaid and private insurance are “both eager to keep costs down, and therefore preferred relatively cheap psychiatric drugs to long-term talk therapy (despite a growing medical consensus that the most effective treatment for most psychiatric conditions was a combination of medication and therapy).”

For the first time, there are millions of young adults who took one or more psychotropic medication during their growing up years.  In the 9 years between 1987 and 1996, the number of youth under 20 taking at least one such drug tripled, going from 2% to 6% — an increase of at least one million children nationwide.  In 2009, 25% of college students were taking psychotropic meds, up from 20% in 2003, 17% in 2000, and just 9% in 1994.

Many parents report that their children vacillate from opposing meds, to reluctantly trying them, to seeing the positives and negatives and then back again.  Parents, too, often have mixed emotions.  They seldom make the decision to use psychotropic medication for treatment in a neutral, stress-free environment.  They receive conflicting messages not only from their children, but from their extended families, schools and society at large. 

Kaitlin Bell Barnett offers advice to parents, garnered from her own experience and observations. Strong, clear communication is essential, she writes.  Even more essential is taking the time to listen to your child’s feelings and thoughts about medication.  She urges parents to explain why the medications are needed and include them in decision making as much as possible.  She counsels parents to listen to their children’s worries and attitudes about medications and find a therapist who is willing to talk about this topic.  She notes that resisting or rejecting medication is common but parents can mitigate it by having a trusting relationship with their children.

I’ve often said that the most important thing parents of a child with mental health needs can do is nurture and value the relationship they have with their children.  In our medication study, youth told us that while they like speaking directly to their prescribing doctor, they relied on their parents for information and a better understanding about medication. It’s still a highly charged subject.  The best thing we can do is to listen to each other.

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