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.