Silence As Kids’ Psych Beds Cut; What If Cancer Or Burn Beds?

The CDC has just released a report on the prevalence of mental illness among American children. It notes: “A total of 13%–20% of children living in the United States experience a mental disorder in a given year, and surveillance during 1994–2011 has shown the prevalence of these conditions to be increasing.”

Yet as that prevalence increases, treatment options are decreasing, writes Lisa Lambert, executive director of the Parent/Professional Advocacy League, which advocates for Massachusetts families with mentally ill children. Below, she discusses one particular pending loss, of Cambridge Hospital children’s psychiatric beds long especially valued by families. The hospital announced last month that it would consolidate two units with 27 beds into just one with 16 beds. It cited tight budgets, declining utilization and cyclical demand. The details are still in play.

By Lisa Lambert
Guest contributor

When Aiden was seven, it seemed like he would never be safe.

At home and in his second-grade classroom, he repeatedly talked about killing himself. He barely slept, raced from one spot to another and threatened to harm his younger sister. His parents stayed glued to his side, barely taking time to eat, shower or sleep.

One day, his mother caught him lighting a fire in his bedroom. Aiden ended up in the emergency room, and later in a bed in Cambridge Hospital. The staff had seen young patients like him before and they knew what treatment would work and what kind of follow-up care a seven-year-old needs. Without that hospital stay, his mother says, ”We don’t know where our family would be.”

Lisa Lambert of PPAL (Courtesy)

Lisa Lambert of PPAL (Courtesy)

No one likes the idea of admitting a young child to an inpatient psychiatric program. It is a last resort, something to be avoided at all costs. Parents will tell you, however, that when they’ve exhausted all the options, Cambridge Hospital has provided the best possible care. Now, it seems that a major piece of that care is coming to a close, unless a miracle happens.

Last week, the Department of Public Health held a hearing to receive comments about closing the Cambridge Hospital child psychiatric unit and eliminating beds. Nurses stood shoulder to shoulder to tell stories of families they’ve helped and of their pride in the wonderful care they’ve given. Parents came to say that this place was a lifesaver and without it, their children would never have improved.

The Child Assessment Unit is one of a kind, they all said, where parents can visit anytime and even stay overnight. Since PPAL is a grassroots organization, we surveyed families about this and want their voices to be part of the public conversation.

Three years ago, there were 310 inpatient beds for children and teens in Massachusetts. Today there are 252. If those 11 beds at Cambridge Hospital close, that number will be even smaller.

Each spring there is a surge in children with mental health crises and each spring there are waits of hours, even days, for the beds we do have. One mother reported that her very unsafe daughter spent “several days in a locked local emergency room” last fall and again this spring waiting for a bed to become available. Others tell stories of how their child was sent two hours away for inpatient treatment and worry this will become more common.

What they aren’t saying, but needs to be clearly pointed out, is that an additional burden will fall on families who are already overtaxed. Families whose children have mental health needs already have enormous responsibility for their child’s safety and care. When they cannot find a needed hospital bed, parents run a hospital-unit-for-one in their home at great cost to themselves and their other children.

‘What would people say or do if they were closing a pediatric cancer center or burn unit? Isn’t anyone outraged that pediatric psychiatric beds are being closed?’

As one parent pointed out, closing beds has a “major long-term impact on the immediate family, the community and society as a whole. We have to stop removing help while we pile responsibility and blame on the families.”

And then there’s the lack of parity for mental health. Besides their worries about shrinking services, nearly all parents felt this trend in closing beds was a form of discrimination. One wrote, “What would people say or do if they were closing a pediatric cancer center or burn unit? Isn’t anyone outraged that pediatric psychiatric beds are being closed?”

It’s well documented that medical beds for children are filled throughout the year, while psychiatric beds are in demand in the winter and spring and often empty in the summer. But inpatient care is not like a product from Apple or the Gap that doesn’t sell well. If this care becomes scarce, children with suicidal or risk-taking behavior can’t find a substitute product.

Everyone agrees we should find a way to provide good care to children who need inpatient care. And we all seem to agree that Cambridge Hospital has long provided that care because of their dedicated staff and wonderful, innovative practices.

Massachusetts is the place where the telephone, chocolate chip cookie and zipcar were all invented. It seems like we have the ingenuity and dedication to create a solution. Many parents sure hope so.

[Posted by Carey Goldberg]

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  • Katherine Martin

    I am a parent for a young man who has multiple disabilities including mental illnesses. As Lisa stated in the article if these were medical beds parents would be storming Beacon Hill. But because of the stigma associated with mental illness only those who work in the field and those affected understand.

    We need to make our families and our communities understand that these children have BRAIN ILLNESSES. It is not the result of bad parenting. We live in a state with phenomenal health care and yet mental health still lags. Access to compent and compassionate care for children with mental health needs is dependent on insurance and location. Children and adolescents needing in patient care in Western Ma are often sent to VT and NH for treatment. Step down services are sometimes 2 hours away and the one closer to Springfield is not well regarded.

    Intensive Care Coordination Services are limited to those children with MA Health and oft parents do not know they can access these services by filing child disability form. Even then – the most recent report filed with the court under Rosie D shows that Western MA is non complaint with the orders regarding wait lists, lack of ICC Coordinators, In Home Therapy etc because the agencies can’t hire sufficient professional staff.

    We need to start adressing these issues a public health crisis. We need schools to recognize the impact that mental health has on academic achievement and social development. We need special education placement decisions made in the best interest of the student not the cost of theraputic day schools. Parents of children and teens with mental illness need to join with NAMI and make their voices heard.

  • Cathy

    I don’t understand how this can be allowed to happen at a point in time where mental health and crisis services seem to be more needed than ever before. My child may not use these services but I know there are children in her class and in her school that rely on them from time to time. For my child’s safety and well being and the safety of all I can’t imagine standing by wondering what might happen if these services are cut. This is an issue every parent should get involved in!

  • Patty S.

    When will this decision be final? I wonder where our political figures stand on the potential loss of such crucial services and the apparent lack of parity that still exists in mental health. Now what prevents every other hospital from cutting their child mental health services as well? I don’t understand how we can say that helping troubled children simply costs too much when the cost of ending services seems potentially far greater. On Monday I will contact my State Representative to express my concern, I hope others will do the same.

  • Marla

    There are already not enough child psychiatric beds – how can we even about closing some?? I have spent several times waiting for a bed,,with a child so unsafe he was trying to kill his sibling, and they wanted me to go home and wait for an opening….I refused of course, but hello? Unsafe?? If this were anything OTHER than a psyciatric issue it would not even be discussed, it just would not happen. What on earth is wrong with people? THIS COULD BE YOU – IT CAN HAPPEN OVERNIGHT AND ALL OF A SUDDEN IT IS YOU DEALING WITH THIS!

  • Charlene

    Great article. From a grand-parent I see how the entire family is affected. Our children are our most important resources and they need a place that can help them and their families. Just because they have mental health issues does not mean that they cannot be productive citizens, they just need the right kind of help that can be given to them at Cambridge.

  • Cara

    Thank you for sharing this article Lisa. The lack of children’s psychiatric beds in MA is a major problem and needs to be addressed. The fact that there are only 252 beds available in the entire state to our children under age 18 years old is a disgrace, especially given the high number of children who have a psychiatric disability and who are in need of inpatient hospital level of care. If we do not enough beds now, why would they think of closing beds at Cambridge?

    When you go to the ER you expect to get relief and if you can not get relief you typically get admitted. When you have a child in psychiatric crisis, there is little relief an ER can provide. If there are no inpatient beds available, the child has to wait in the ER…with no relief and no treatment. Last month, my 14 year old son, diagnosed with Autism, PTSD and Bipolar Disorder began to decompensated. He had not slept in 48 hours at home and was becoming increasingly aggressive at school. One night that week he became so frustrated that he was not sleeping that his tantrum escalated quickly into serious homicidal threats and he ended up violently attacking me and his ABA therapist to the point where we were both severely injured. When the police arrived, he was so dysregulated his eyes were barely open and it took 5 cops to restrain him, cuff him and eventually get him onto the restraint board to be transported by ambulance to the local ER.

    They determined my son needed to be hospitalized asap, but there were no beds available in the entire state of MA so we waited……..and waited…….and waited….for 5 nights and 6 days. For 6 days we lived in an ER bedroom….me, my son, our ABA therapist and revolving security guards at all times. There was no Child Life Specialist at the hospital so I entertained him day in and day out. My son was in severe crisis, but yet he could not get the treatment he needed; there was no help and no relief in the ER. He was in and out of bed restraints each day and no one understood his Autism, so crisis situations were quite intense. We were stuck and had no where to go. If more inpatient psych. beds were available for children like mine, long waits in the ER would not be an ongoing issue and children and adolescents could get the help they need, when they need it instead of suffering through endless days of crisis episodes because the medical professionals in the ER do not know how to treat our children.

    • Bailey

      Cara, I really relate to your story. although my circumstances are quite different, as a young adult, I’ve been to the ER needing psychiatric care for PTSD. At supposedly one of the best hospitals in NJ, the attending physician refused to see me because she had to “see patients who were ACTUALLY sick.” I was alone, I couldn’t contact my parents. She refused to give me my medicine (triggering major withdrawal!). There were no psychiatrists there to do an eval, so I was transferred to another ER, where I waited 4 days, in a locked room by myself (even without being an immediate threat to anybody– I was very compliant and calm, given the circumstances). I did my best to advocate for myself, but I felt that my hands were completely tied and my requests were not being heard, let alone honored– a very scary experience, especially for someone with PTSD!! After my experience, I wrote a letter to the hospital and the Joint Commission filing a complaint. Also I sent the letter to my insurance company who filed a separate complaint on my behalf. i hope by telling stories like mine and yours, we can effect some change… Thank you for your post.

  • Sandy J.

    I, too, have waited on more than one occasion with my child in the ER for an open bed. His first stay was at the CAU in Cambridge. It is a wonderful program. Quite frankly the very thought of losing beds boggles my mind. We need to be adding more beds and supportive programs for children and their families. The system is broken and needs repair. What more can we as parents do? The programs available now are invaluable. I don’t believe my son, who is today in an IRTP would be alive today without the caring staff at the hospitals and DMH.

  • Amy T

    I have to say that the idea of losing beds, especially these beds, is very disturbing to me. My daughter’s second hospitalization was in Cambridge Hospital only one week after her first inpatient stay somewhere else. I couldn’t get over the treatment that we, as a family, received here. It’s a traumatic thing for a parent to have to walk away from your child in that condition and leave them in someone else hands when there is nothing more that you can do. The staff there is unbelievable, I always felt that she was in good hands here. The doctors spent a lot of time with me discussing her condition and took great care to put things into place that would be helpful in our post-hospital period.

    It truly saddens me that these kids are going to have an even harder time getting placed when they really need it. I’ve spent many hours sitting in ERs only to be told that there aren’t any available beds. I’m praying for a miracle for these beds to remain and for the system to take better care of these kids. Mental Health is a medical issue and it’s true that this discussion wouldn’t be happening if this was a burn unit or cancer center. All kids with health issues, mental or physical, should have the same access to treatment regardless of the particular ailment.

    Thank you for this…

  • Tara Woodbury

    Never used the Cambridge facility but i have personal experience with how hard it is to get inpatient care for mentally ill kids. Never mind quality care. Sounds like this facility is very good and we need more of thst not less.

  • Mniarhos

    One of my children benefitted from the care at CH. our family was supported and our child was treated with gentle care. I am sorry that it is no longer available.

  • Valerie Bowman Hammond

    At this exact moment my friend and her daughter are waiting for a bed to open up. They spent last night in an ER and were told to go to a different ER today. Really? An unsafe child spent the night on a gurney in the hallway and that is ok in Massachusetts? Outrageous.

    Closing accessibility to care for children is unacceptable, and patently discriminatory.

  • Maria

    My child spend about three months total at the Cambridge CAU a few years back when she was eight years old. I cannot begin to express my appreciation for the kindness and professionalism of the staff at the hospital. They treated our family with the utmost respect as parents, as equals, as experts of our child. They did not treat our child as a “little mental patient” (an experience that we had at another hospital) but they remembered that she was a little girl and interspersed with therapy, school and medication trials were times of fun – art, walks to the playground when appropriate, roller skating down the hallway…. enjoyments that a child that was hospitalized for (dare I say) a physical illness would be given. Now my daughter is 14, she still talks about her time at Cambridge Hospital and while she acknowledges that she never wants to be hospitalized again, she still remembers some of the staff and occasionally says that she misses them and how they cared for her. It’s quality services like that which need to be saved. Incidently, since the staff at the CAU helped advocate with the school and get my daughter the services she needed, my daughter has not been hospitalized since – I call that a success story.

  • gratefulFamily

    Our family benefited from inpatient services more than once from the Cambridge Child Assessment Unit (CAU) for a child that was homicidal and suicidal. One time we had to wait over 24 hours in the ER there for a bed to finally open up. Our family is still together today thanks to the inpatient unit at CAU and other similar care later on in life. I can’t imagine where we would be today if the CAU had not been available — we would probably be visiting this child in jail instead. Please keep this unit open and even expand it!!!

    • Linette Buzza Murphy

      We waited in an ER for 5 days while they looked for beds from Maine to Delaware, and it took a call to the Office of the Child Advocate and to my State Senator to finally get a bed for my daughter at CAU. Our children and our families CANNOT afford for any of these beds to be closed! There is already a severe shortage.

  • Linette Buzza Murphy

    Thank you so much for this article! Amazingly enough this news comes during Children’s Mental Health Awareness Month. People need to really educate themselves on the lack of services available to these children and their families. Children’s Mental Health Awareness happens every day for families like mine and without Cambridge Hospital and other facilities in the state, our children will continue to suffer and lack access to the health care they need. Thank you to PPAL and Lisa Lambert for all the work they do, thank you to the hard working healthcare professionals at Cambridge Hospital who truly make a difference in the lives of our children, and thank you to WBUR for sharing this article on a very important topic!