Tag Archives: out of pocket expenses

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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Special Education Advocacy

September 5th, 2012

Special education advocacy has evolved from a voluntary practice by which parents support and advise each other, without the expectation of personal gain, to a highly lucrative service.  Unlike other types of personal services, it is not regulated by the State. 

Parents may not know it, but special education advocacy has become a very profitable business.  There are hundreds of advocates in Massachusetts. Some advocates charge rates as high as $100-$120/hour. Some advocates charge for every contact with the client- email, phone, in person- and they charge by the minute. There are advocates who net $115,000 or more annually. That’s substantial revenue for a service that has no entry requirements and is completely unregulated. Anyone may open a practice as a ‘special education advocate’; there are no educational, training, competency, or licensing requirements.

The purpose of regulation is to protect consumers from wasting money or receiving poor service from unqualified service providers.  Regulation includes educational or training requirements and licensing, which may include exams to prove competency.    Until this type of service is regulated, my advice to parents is to practice certain measures to keep the advocates accountable.

Special education advocacy should be regulated. Clients should be assured of receiving quality service from well-educated, experienced professionals, who have passed examinations to demonstrate competency. Advocates should be required to adhere to ethical guidelines, standards or practice, regulations, and educational requirements. There is a voluntary association of advocates called SPAN: Special Education Advocacy Network. SPAN has published on their website a list of ethical standards, however membership in SPAN is not mandatory.

The State regulates at least 30 categories of service providers including hairdressers, manicurists and aestheticians.  Advocates have the potential to cause more serious harm to clients and their services can be much more expensive. An advocate’s poor judgment or work product could cause a school district to deny services to a child or could waste the client’s money.  Clients rely on advocates to do high quality work, however some advocates make careless mistakes, such as failing to document important conversations.

An implication of the absence of regulation is lack of standardization of training. The training that advocates receive is variable. Some advocates participate in the week-long, optional Parent Advocate training provided by the Federation of Children with Special Needs. Graduates of the course may opt to perform an additional 50 hours of volunteer work; for the combination of the course and volunteer work, they receive a certificate.

Some advocates do work which bears similarity to the work of attorneys, such as giving legal advice and participating in hearings. However, attorneys study law for three years, and pass rigorous bar exams.  The participant in a week-long course cannot possibly obtain that competency in law; advising clients about legal issues requires skills in legal analysis and reasoning that are taught in law school.

Attorneys are also bound to the rules of Professional Responsibility. During one of the summers when I was a law student, I worked for the Supreme Court of Pennsylvania in the office that investigates claims of professional misconduct.  Lawyers who produced poor quality work or who violated the Rules of Professional Responsibility work faced disciplinary proceedings and serious consequences, including disbarment.  There should be licensing exams for advocates and a State agency that would hold advocates’ work to high standards.

This blog entry does not apply to the work of any particular advocate.  The advocates whom I know personally, produce fine work. As a former attorney, I cannot help but wonder what recourse a client would have if her advocate were to make errors of judgment that might have been prevented through appropriate training, or if the advocate were dishonest.

As long as the practice of special education advocacy continues to be unregulated, some advocates could be tempted to act in ways that would cause them to lose their professional licenses if they were attorneys, such as misrepresentation of their expertise or unfair or dishonest practices. 

My advice to the consumer is to keep their advocate accountable and to have a cap on spending, determined at the outset in order to evaluate whether the advocacy is effective, before too many hours have been billed. Consumers should request documentation of advocates’ conversations. Be aware that there is no correlation between the professional rates charged and the qualifications of the advocate.

I am interested in hearing from you: has anyone had an experience with an advocate which might have had a different outcome, if the advocate had passed a licensing exam?

Our guest blogger, Rachael Wurtman, is in private practice as an Mental Health and Autism Spectrum Advocate, who advises parents about and advocates for  interventions and services, at schools and in the community. She finds pediatric mental illness and autism spectrum disorder fascinating and is constantly learning as much as she can. She is trained in law and in child development and has chosen to give up the practice of law.  Visit her web site here.

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Facing Up To Barriers

June 24th, 2010

About a year and a half ago, PAL surveyed parents asking questions about their struggles and successes getting needed treatment for their child with mental health needs. It was a short survey and was available for only 6 weeks. 471 parents rushed to respond and about half wrote comments, told stories and vented about how tough it was to not only get services but to even find out about them. In most surveys about 5% of the respondents take the time to write comments; to have half do so tells us that parents were just waiting to be asked about their lives.

In the report of the survey results, Overcoming Barriers in the Community, there were several noteworthy findings. First, parents reported that out of pocket expenses were hurting their families. This was true for families with little income as well as those in the middle class. Children with mental health needs often see a therapist as well as someone to prescribe medication. So there are two sets of copayments instead of one as well as the copay for medication. Since some parents feel ambivalent about medication in a way that parents whose children have serious medical needs don’t, they are more apt to purchase herbs to help their child sleep or supplements to help them feel less anxious. It all adds up. A 2008 California study reported that there is very little cushion in most family budgets for health care costs and many families make trade-offs with paying other bills or even delaying other medical care.

The survey also asked about respite care and surprisingly, 1 in 5 parents had never even heard of it. Of those who had, 75% thought it was an important part of their child’s care and most found it difficult to get. Many families truly want their son or daughter to stay at home even with challenging behaviors and swinging moods, but the stress of caring for them, coordinating their care and advocating for services is enormous. Quality, timely respite care can make all the difference.

Most poignant were the stories of stigma and the impact of a child’s mental health needs on the family. Parents over and over again wrote of how their child’s behaviors were seen as the end result of their inadequate parenting skills and worse, nearly half said that their extended family made them and their child feel unwelcome. One commented, “It is a frightening and lonely path that I never envisioned….”

Yet throughout their stories, families wrote of their successes. Sure, there were long waits, but when the services were in place improvements began to appear. Yes, it was hard to get useful information, but when they found another parent to exchange information with, share war stories and point out shortcuts, the load was lighter. Overwhelmingly, other parents who’ve been down the same road were named the number 1 resource. That either means that one veteran parent has been very busy helping hundreds of other parents or that parents are networking and supporting one another.

No one raises their hand and says, “Pick me. I’d love to be the one to parent a child with mental health needs and face all these challenges.” But for those that find themselves doing just that, access to good information, effective services and other parents was cause for gratitude.

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