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

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?

When life hits hard, challenge your challenges

lifeYou’re on the bumper of the guy in front of you, frustrated beyond belief that there’s traffic for some reason today, when you need to make an important meeting. As you’re pulling into the parking lot late, it starts to rain. You try sprinting to the door, but slip and hurt your ankle. After a second to collect yourself, you think, ‘why is everything going wrong today?’

After taking a step back, many realize how often these situations happen; everything seems to crash down all at once, usually at the most inopportune times. Your kid gets sick, work gets busy, and you and your spouse have been having martial disputes. Why don’t these life challenges sometimes feel more spaced out? I looked to physics for an answer to this question. Murphy’s Law simply states that anything that can go wrong will. Feels familiar, doesn’t it?

I went searching for this answer after going through an impossibly hard month. On my way to a work meeting, I was in an accident and totaled my vehicle. It was the first car accident I had ever been in, and I was devastated. To my complete and utter shock, not even two weeks later, I was hit in a rotary while borrowing my parents’ car. A couple of days later, I came down with a cold that seemed to hang on forever. That same week, the kitchen sink broke and I could be seen washing dishes in my bathtub. The next week, I faced stolen packages from the stoop of my apartment. When the month was nearing its end, I felt relieved; did this mean my bad luck streak was finally going to be over too?

On the very last day of the month, one last challenge slipped in; I was awakened to my cat eating rat poison! After a long and expensive trip to the ER, I can finally say that it’s all over. The month has finally ended and there were no casualties (much to my surprise).

So what can you do to counteract Murphy’s Law? Unfortunately, not much. Try to refrain from this pessimistic way of thinking whenever you can, and instead, take responsibility for your life and the circumstances that you can control. The more you feel that you are steering your life rather than having life happen to you, the better. Secondly, expect the unexpected. Life rarely happens how you think it will, even when you’ve taken the same route to a work meeting a hundred times. Take a deep breath and realize that that uncertainty is okay; it’s up to you to react to it the best way you can. Lastly, try to find any good that you can in challenging incidents. Your kid gets sick – it could have been something much worse; work is busy – at least you have a job; you’re fighting with your spouse – maybe you’ll be closer after working through these issues.

The better you become at letting unexpected events roll off your back, the easier you will find your day to day. Ask yourself, will this matter in five years?

Most of the time the answer is no. It’s easy to get distracted and brought down by a million little things that can go wrong, but when you stop to think about it, what really matters? Very little actually; security, health, love, happiness… and will any of those be permanently affected by a minor car accident, or a plumbing issue? The answer’s probably not… so why are you still wasting your precious energy on it?

These are questions that I, too, have to continually ask myself. Challenge your challenges.

Erin Edgecomb is our guest blogger. Erin is a young adult and a member of PPAL