We Don’t Call Them “Wait Lists”

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.

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9 Responses to We Don’t Call Them “Wait Lists”

  1. Meri says:

    It amazes , and is so frustrating to explain the the parent, that has never needed help for emotional pain what the wait is like, why there is limited services, and why the healthcare looks at the two so differently. I do feel that the new services will bridge physical and mental health together.

    They are so suprised at the customer service, stigma, lack of respect and overall disconnect from “regular” healthcare. The WHOLE child is a huge issue for my family and many others. I had a huge challenge understanding the difference in care.

    Let’s be honest that the wait for mental health care needs to change, but lets also be honest that there is a wait list for the new services.

    Families who are on the wait list , or have been since July/ August need customer service- check in or rather a quick connections to parents- PAL!!

    I remember being in the ER with my son and having no one talk to me for 5 hours. Alone, confused and simply shocked that no one wanted to make sure that we were “ok”. The only piece that they were aware was that I was locked in a room with my son and that I would not leave.

    Since that first time I prepare for the wait! I change my language, pack my “maternity” ER bag, and prepare for the friend support that I can call every hour to say “hello” and keep me focused for my sick kid.

    So for the many familes that “wait” – I know what it is like, I look forward to a change for you all and my family also.

  2. Jeanne says:

    Well what about the Mobile Crisis “Service” that is not mobile at least for our family. Or at least we were told they are not mobile for our family and also “do not help stabilize. Will not help stabilize. We will ONLY evaluate for hospitalization”.

    • Barbara says:

      I am sorry to hear Jeanne experience with mobile crisis.I am a family Partner in lawrence area we not only respond to assess for hospitalization but we also make referalls to other agencies if the client is NOT hospitalized.We follow up with families for 72 hours..either by phone or another home visit….the only service that has wait list right now aare “in home therapy”..
      We also respond to schools courts, group home,hospitals or anywhere the MassHealth client is requesting a “mobile crisis response”…

    • Mildred Lefebvre says:

      Speaking of Mobile Crisis, I must say that for my family it is pointless to call them. Each time that I have called them, I have felt that I was stupid enough to even dial their number and disturb them. I had one person tell me, “Are you not the parent”? “When is their bedtime”? “Should they not be in bed by now”? “You need to put your foot down”. “Keep them separated and tomorrow will be a new day, you send them off to school and that’s it.” “What exactly did you want from us”. And that isn’t all that I have gone through. I don’t understand, why bother with mobile crisis. I’d prefer to call 911 and ask them to send the ambulance for transfer to the hospital and there I know they will have to evaluate them and hopefully help our family with some services. This is very frustrating. Not a day goes by that my house isn’t upside down, where my kids are hurting one another and I am doing all the intervention that I can, but I am only one against four at the present. Maybe, I should contact my natural supports as I was told to do being that mobile crisis can not help. At this point, I am ready to do my own wraparound and be my own ICC and Family Partner.

  3. Nancy Collier says:

    I recently waited six months for an appointment with a GI doctor. Thank goodness it did not turn out to be cancer. I think this is a problem throughout the medical field. But ususally with a medical doctor at least you know when your appiontment is. You know if you are on a “cancelation” list and you know you can call if your condition gets worse.

    But this buisness of not knowing were a referral is at and not getting calls or updates is unaceptable. Especially when it comes to your child, a parent needs to have some idea of what is going on.

  4. David Keller says:

    Of course, wait lists only happen in Canada. This sort of thing NEVER happens in the United States.
    I am, of course, being ironic; people are constantly amazed when I tell them that many have to wait in line for care here in the United States. Our fee for service model has created many market distortions, and it will take much time and energy to fix them.
    And the families will, as always, bear the brunt of the burden.

  5. Mark Zanger says:

    Beautifully written point. Like on commenter above, I am a family partner on a mobile crisis team (Boston BEST) that will indeed respond on a 24/7 basis and tries to get kids quick services to avoid hospitalization, or to hospitalize quickly when necessary. But the services are still adjusting to the new system, and we always knew that 20% or fewer of children and adolescents with mental health issues were actually getting treatment, so even a small improvement will flood any existing system.

    That said, my previous experience working with family members of people with intellectual disability exposed a particular issue with “waiting lists,” which is that they provide an opportunity for class actions suits like Rosie D. A little more than ten years ago, DMR (as it was then called) maintained a waiting list for residential services, and there were successful suits for both people with intellectual disability and brain injuries. Result: the litigant class was closed on the dates of the lawsuits, and DMR stopped keeping lists so they wouldn’t have to settle another lawsuit! To this day their priority system is either random or a secret or both.

    One last point on this: provider agencies have been invoking catchment areas, even though the Rosie D. settlement states explicitly that families may elect services from any accredited provider organization in the state. While it is obviously impractical for an agency in Pittsfield to provide in-home behavior therapy for a kid in Taunton, I think families should be able to push back when they are slightly out of area and the agency that admits to covering their town is talking about a four-week wait.

  6. It is true that it can be frustrating for parents to have their children be on waiting lists for counseling and for intensive services. The waiting list is to due to the shortage of qualified mental health clinicians as a result of an broken infrastructure payment and reimbursement system curretly in place. As a clinician, I am seeing more children and teens referred for counseling; some need just individual outpatient counseling while other need intensive services that may take awhile to be seen.

  7. Lynne says:

    Although it is important to give all the “new services” time to get settled and offer services it is disturbing to hear the many families that have been lead down a slippery slope, services through DMH have been cut, I know my son and I got a letter a year ago saying sorry your case is closed! If you need something in the next 12 months give us a call and we will help you.., well that did not happen. My son is eligible for the crisis team if he needs screening, well that is if we lived in an area where they answer the phone but we don’t, so much for that option! We have private insurance that I pay my hard earned money for health insurance which keeps us ineligible for services..I often wonder why those of us who have private insurance have not started our own class action suit! Mental illness is not income based, many private insurance carriers are worse at providing mental Heath care than MBHP!