Every parent knows what it’s like to wait for that call back from the doctor when your child’s fever has jumped into the stratosphere. Or the call that tells you what the strep culture showed or if the x-ray revealed a broken bone. If that call doesn’t come right away, you experience a lot of nail-biting anxiety and a sense of frustration watching your child feel just miserable.
Now imagine that the call you are waiting for is because your child’s violent moods are holding the whole family hostage. Or your son is doing risky things and just doesn’t care about his physical safety. Or your daughter talks about death and dying in a way that sometimes makes you think she’s trying to shock you and other times gives you a frightening glimpse of her inner pain. These things are urgent symptoms just as much as a fever is. It hurts as much — if not more — to wait for that call while watching your child’s emotional pain.
Famillies of children with mental health needs have been waiting in this state for decades. For more than ten years, my organization has been documenting how long parents have waited for an appointment with a psychiatrist (months), a therapist (often weeks), a hospital bed (hours or even days) or a therapeutic school placement (weeks or months again). However awful the waits, there have been ways to approach them. Parents are told there is an opening for their child on a certain day or that there are 3 children ahead of theirs on the wait list. After all, this is good customer service. If you know how long it’s going to be, you can draw upon that last bit of fortitude and hang in there for a week or month or however long it is.
In 2006 federal judge Michael Ponsor ordered changes in the way Medicaid services for children and youth are delivered in Massachusetts. At the heart of that order is a requirement of “reasonable promptness” when services are medically necessary. More than 2000 children and their families are enrolled in the new coordinated community-based services offered through the Children’s Behavioral Health Initiative (CBHI). Some families experience a fast response to their phone calls and requests for services. Others, however, are having a much worse experience.
Some families are calling to apply for services and never get their calls returned. Others go through the initial intake process and then hear nothing for weeks. Still others are told that there are no openings near their home; instead they must go to another area and see if there are openings there. When one parent asked where her child was on the waiting list, she was told that “We don’t call them wait lists.”
Waits are nothing new for families whose children have mental health needs in Massachusetts. While it’s disappointing to see that the new CBHI services have lengthy waits in some parts of the state, it’s a puzzling strategy to eliminate the use of wait lists. Most of us use wait lists as a way to check in; to see if there is a system for triaging should our child become worse and as a mechanism to ensure fairness (first come, first served).
Living with a child who has mental health needs includes a lot of uncertainty. Many parents wake up each day and worry, Will it be a good day or a terrible one? A system where there is no way to gauge just how much longer you have to hold on adds to the burden for parents. Waiting is hard enough all by itself.