Ten years ago last month, Massachusetts enacted a mental health parity law. As with most legislation, there were a lot of compromises along the way and no one was really sure if this law would make a significant difference. (It was an important moral victory, though.) The list of diagnoses was limited to those that were considered to be“biologically based” (bipolar made it in, post traumatic stress disorder was out) and insurers could impose limits on anything that wasn’t “medically necessary.” PAL was the only organization talking exclusively about what children and families needed and worked hard to get the insurance benefit to pay for therapy in other places than an office. We had high hopes for what the passage of parity would do for children with mental health needs and their families and a lot of hopeful guesses.
Ten years is certainly enough time to tell if any law has made a difference. What parity is supposed to do is simply ensure that your insurance covers your mental health treatment just as it does your medical treatment: same deductible, same authorizations, same copayments. Our parity law of 2000 was limited in scope — many called it partial parity. Does that mean it only partly helped?
Here are five ways that the mental health parity law — with all its flaws — has helped children and youth with mental health needs and their families. Sometimes it has made a direct impact and other times its influence has been more subtle.
First, parity increased outpatient visits so that children have as many visits as they need in a calendar year (here’s where that medical necessity standard comes in: it’s frequently the insurer who decides what they “need”). Before this, children often had only 8 visits (or 12 or 20) a year, no matter what. Many families reported running out of their therapy visits in the summer, often right before school was going to begin. For many, the individual therapy and family therapy visits came out of the same pool so that if you had family therapy, your precious number of individual visits was decreased.
Second, by including children in the language of parity we agreed many kids actually didn’t have perfect childhoods and their mental health needs often look quite different from those of adults. The language in the law for children and teens has standards around functioning, not diagnosis, even though it isn’t always used.
Third, we laid the groundwork for paying for mental health services for kids in different settings. The law said you could receive therapy at home, at school or in other settings. Why is this important? Children and youth often resist going to an office or institution and parents can have a heck of a time getting them there. Many also will speak more freely in a familiar comfortable setting.
Fourth, this law actually did help reduce stigma. When Nancy Collier and I first worked on this law, we had to use our own personal stories to highlight the issue in the media. Now, we have many families willing to speak out and tell their stories, hoping to make things better. Hearing about real people, their struggles and successes, always makes the issue come alive. This willingness to speak out wasn’t there just ten years ago.
Last, this law affirmed to parents and their children that mental health is as important as physical health. We know our children and familes are in every city and town in the Commonwealth, from the child who shows up in the school nurses office with a stomach ache (often anxiety in disguise) to the child who experiences trauma and has witnessed violence in his home or community. Their future depends on all of us saying over and over again, children’s mental health matters to me, does it matter to you?
What do you think? Has mental health parity made a difference for you?
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.
A little over a month ago, 5 fearless parents and I conducted a 3 hour workshop for residential providers from all over the country. Their national conference was held in Boston and we were the only workshop with an honest-to-goodness parent panel. Some of the other workshops included youth speaking about their experiences, but we were the lone parent voice. We used our time effectively, recounting experiences and giving advice.
Residential care for children with mental health needs is slowly changing. This is partially caused by changes in funding and certainly influenced by a new understanding that out of home care must be seamlessly connected to a child’s family and community. The Building Bridges Initiative recently held its 3rd summit in Omaha and continues to promote practice and policy to strengthen partnerships between families, youth, community and residential based treatment. There are some truly innovative and exciting programs being developed. It should go without saying that any new policy, practice or design needs to include input from parents.
With this in mind, our presentation also included a top ten list called, “Ten Things Parents Want Residential Providers to Know.” This list is a result of many heartfelt conversations, moments of humor and often exasperation shared by dozens of parents over the years.
Number 10. See me as part of the solution, not just part of the problem. Let me know what you’re finding is effective and what isn’t working – I’ve been through failures before and I know they are part of the process.
Number 9. I know things about my child’s history, strengths, responses and culture that no one else does. I’ve known my child since he/she was an infant and I know things no one else in the world knows. Sometimes I worry that some of the information in his file might be wrong.
Number 8. While you are making decisions based on my child’s needs, I am making decisions based on my family’s needs. With each decision I think about the impact on my entire family, especially the other children.
Number 7. When we have a difference of opinion about what to do for my child, remember I am an expert too.
Number 6. Don’t call me Mom (or Dad).
Number 5. I want to know that you see my child as a special and unique individual. As one parent told me, “Just for the length of this treatment meeting, I want my child to be just as important to everyone else as he is to me every day.”
Number 4. I am tired and frustrated by everything we have gone through to get to this point. There are days when I don’t feel successful at parenting this child. At our first meeting, I was probably at a low point.
Number 3. I really value good information. Getting useful information to help me understand my child’s diagnosis and how to access treatment for him has been very hard to come by.
Number 2. Regular, detailed communication is important to me. I want to hear about my child’s progress and help develop strategies to build on successes. I appreciate all forms of communication (phone, email, newsletters)
Number 1. Please train your staff on the principles of family-driven care. I am getting tired of training each new person myself!