Acute mental health care for kids: a mirage in Massachusetts?

TiredIt’s that time of year again.  Oh wait, it’s actually several months too early.  The “seasonal crisis” around psychiatric beds for children and teens has shown up far earlier this year and with a vengeance.  According to the calendar, there should be at least a few beds available for the children and teens that need them.  A logjam like this is supposed to take place in the spring.

At my office, the phone and emails are nonstop.  Often, they spill over to the weekend.  A few days ago, we heard from a mom whose 14 year old son had swallowed a bottle of Tylenol. This was his third suicide attempt.  She rushed him to the emergency room and got medical treatment right away.  But once that was completed, he needed inpatient mental health care.  “You have to wait, his mother was told twice a day.  “There are no beds.”  She’s a smart and proactive parent and was trying every avenue to budge a system that told her there was nowhere to admit her son for treatment.   When she called us he’d been waiting for four days and counting.

We are not the only state grappling with this issue.  Last summer, the Sacramento Bee reported that hospitalizations for California children and teens had spiked 38% between 2007 and 2012.  Nationally, hospitalizations have also increased but at a slower pace than California.  Connecticut also reports an increase in children and teens coming to emergency rooms in psychiatric crisis.  Data from the state’s behavioral health partnership shows that the number of children and teens stuck in emergency rooms rose by 20 percent from 2012 to 2013.

When a child is put in either a medical (not psychiatric) bed or waits in the emergency room, it is referred to as “medical boarding” or just “boarding.” We are hearing a new term this year:  boarding at home.  Parents are told their child needs a hospital or other acute care bed (which means they are a danger to themselves or someone else) and then told the child will be “boarded at home.”  Unsurprisingly, parents worry both about that child and any brothers or sisters.  This happened to Kelly, a mother of an 11 year old boy,  Her son was aggressive, diagnosed with a mood disorder and had been hospitalized before.  She would have to find someone to care for her five other children if he waited days in the ER.  She agreed to “board” him at home and her worst fears were realized when he attacked his younger sister.  Charges of neglect were filed against her for failing to protect her daughter and she is angry and frustrated.  “I did everything that was recommended, she said.  “And now this.”

Spending days in an emergency room can make some young people’s problems worse.  They see other kids leave and wonder why they are still stuck there.  Some have parents who stay the whole time, while others don’t. Often the behavioral health rooms are stark and isolated, not intended for long stays.

Hannah, the mother of a 16 year old called us after she and her son had waited for a bed for seven days.  His diagnosis was complicated and he was a large teen (over 6 feet tall) so several hospitals had turned him down.  His behavior had escalated at school, with lots of yelling and becoming agitated.  She feared he would be arrested and stayed up all night watching over him before she brought him to be evaluated.  She was told that if she left him alone in the ER she would be charged with abandonment, so she stayed and worried about her terminally ill mother-in-law and how long her employer would be patient.

Hannah’s son was finally sent to a hospital out of state.  Sometimes, that is the only option for children with complicated diagnoses.  But families can’t always make that work, particularly if they don’t own a car, work two jobs or don’t speak English.

There is no true planning going on to fix inpatient care for kids in Massachusetts.  We have meetings, we talk, we share our war stories.  There are worries that more beds will close because the rates don’t cover costs.  There are reports that the kids who are admitted are more acute than they were five years ago and inpatient care might need to be redesigned to address that.  Some speculate that because we have put strong community based services in place we are seeing the unintended consequence of families and clinicians managing children in their homes and communities until the last possible second.  This means children have very acute needs when they come to the emergency room.

Whatever the reasons, the impact on families is enormous.  They often weigh two terrible options.  If they wait for days with their child, their other children suffer or they put their job at risk.  If they bring their child home, they might not be able to manage things and someone could be hurt.  Stephanie, a single mother of three, stayed in the ER by her son’s side last month for four days.  She was told that she couldn’t leave him.  Her mother stayed with her eight year daughter, who missed school.  Even though she called the school to say she was stuck at the hospital, they filed against her saying her daughter was truant.

No one seems to be responsible.

At my office, we are recommending that parents call their insurers directly and ask them for help.  We tell them to call their legislator and let them know we can’t fix this alone.  So far, the best we can do is support each other and advocate like there is no tomorrow.

 

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8 Responses to Acute mental health care for kids: a mirage in Massachusetts?

  1. Suzanne says:

    This tragedy has been going on for years, made worse now by the closing of beds. Children and adults with mental illness are not cared for in this state or country. It is shameful. We struggle everyday with my 6ft 3, 298 lb 17 year old. He’s been hospitalized often. We “boarded” on a pediatric unit for 5 days once, at home with his younger sister farmed out to friends for 7 days and never did get a bed, and in a residential program for 4 days where he laid on the floor, in continent of urine and stool and cried and begged for help. Neither I or the program could move the system. He was “deferred” by 6 facilities before finally being placed in Vermont, 21/2 hours from our home. Thankfully there have been caring professional along the way but they too are frustrated with the system.

    I am a nurse practitioner in pediatric critical care. We are not allowed to “defer ” patients. If a kid needs medical care they get it. If we can’t provide it we are required to find it and are responsible for the child until the other facility assumes care. Not the case in psychiatric care. Kids with chronic illnesses like diabetes or cystic fibrosis are cared for by the same health care team each time they are hospitalized. My son, never been to the same hospital twice nor cared for by the same team of nurses and psychiatrists. Parents are not “required” to stay at their child’s bedside. No one calls DCF if a parent goes to work, though employers are much more accepting and tolerant when a Mom calls and says my son with leukemia is in the hospital than my son with schizophrenia.

    None of this will change until the people and leaders of this state and country recognize that mental illness is just that an illness with biochemical causes. I have been advocating for 14 years and though there have been small improvements mostly what has happened is that I have learned to lower my expectations, that hospitalization is an absolute last resort, and that we are on our own to get my son the care he needs.

    Suzanne

  2. Eileen says:

    We have been through the “deferral” multiple times, as well as boarding both at the hospital and at home. We also had a 51A filed on us for boarding at home when there were other small children in the house, while we waited for a hospital bed.
    My question is, where does one begin to support advocacy to change this system? Clearly more acute mental health beds are needed, and there needs to be a safe system for children and adolescents who are not able to find a bed. Where to start?

  3. Maureen Ney says:

    My granddaughter currently is boarding at a hospital waiting for a CBAT bed. Last week she was waiting in an ER then up on a medical floor and was then told she needed to wait at home and if I did not pick her up they would file a 51A. One week later she was back in the ER and once again waiting for a bed.
    She has been experiencing this revolving door syndrome since age 5. I also had a 51A filed on me the day before I had chemotherapy treatment for breast cancer; I could not go and sign her in to a CBAT because there was a snow storm and I was sick. I really do not understand how this got to be so difficult. I utilize the advice of Therapists, Drs., schools. I sometimes feel that all of this Therapy has made her worse. She’s so confused, I’m confused. All I want to do is get help for my granddaughter. I’m afraid for her.

  4. Charlotte says:

    In April of this year my 15 year old son assaulted my fiance during a rage. We spent three days in the emergency mental health waiting room because there were no beds available. For three days I was not allowed to leave me son, shower or go home to change clothes. My son and I slept on chairs that converted into “beds” while we waited. After three days the only place that had space was a very dirty facility that my son has a very brief horrible stay in the past. I swore I would never put my son there again however I was desperate so we took the bed. Thankfully he was transferred days later to a much better facility in New Hampshire (2 hours from our home). My son is currently at Worcester Recovery Center & Hospital where he is receiving wonderful care. After fourteen hospitalizations, I fully understand the acute care need and hope for major change in the future.

  5. Michelle says:

    My son (now21)had multiple hospital stays and long ER stays. We were threatened with 51a’s when due to the safety of our other children we refused to take him home. Once when we did it was several days before a hospital bed was found and during that time he attempted to stab me and them stabbed himself with a knife. Next time I refused to wait for a bed at home. Later when he got into serious legal difficulty we refused to bail him out of jail again due to family safety concerns. We went to court and were charged with child abandoment. We NEVER abandoned our son. Lucky for us the judge showed a real interest In why we were afraid to bring him home. He ordered an eval which agreed he was not safe to return home and we were finally able to get him the help he needed and we were not charged with abandonment. But at that time we were willing to do whatever it took to protect his siblings at home. I do finally have some
    Perspective on those very very difficult years that I wondered if we would all survive. My heart goes out to all the troubled kids and their parents doing the best they can with what remains a poor network of help for families coping with mental illness.

  6. Maura says:

    Not even sure where to begin, most people say that children are our future but sometimes the actions of adults put that future in jeopardy. For at least some of our children, the most vulnerable, are not given what they need to succeed and that is wrong. The fact that we can get any other kind of hospital bed for our children except when it is a psychiatric emergency is telling both them and us that they are not valued or important. Then you have the additional trauma from the waiting, why would anyone come for help except in the most dire circumstances when you are treated as a person with no value. I have been in those little rooms waiting, and waiting while the stress level increases both for my child and our family.

  7. Meghan says:

    IRTP’s are struggling to fill beds and there should be a more intense process of who goes to one so that acute beds can open up and kids can get the help they need

  8. Christine Eirby says:

    I am writing this reply from the ER at Cambridge Hospital. It’s Sunday at almost 6pm. I’ve been here with my 14 year old son, waiting on a CBAT bed since Saturday at 12:30 pm. His diagnosis is Bipolar Disorder. He’s been physically aggressive / assaultive to myself and his 15 year old sister , resulting in two calls to our local Police Department. He has no other medical issues or other extenuating barriers that should cause a delay in placement. This is ridiculous and for sure, not therapeutic. I’m a single working parent. I am being urged by the ER docs that perhaps a discharge home is better. Really? I need to keep both of my kids safe. I can’t have them together until meds are stabilized. I am saddened that not much has changed in eight years since our journey through the mental health system in MA began. Years ago, I went through this with my daughter, However, I attributed lengthy ER “holding room” waits to the specialized medical care she requires.