Children's Mental Health: the problem of boarding - Linette's story
May is Mental Health Awareness month and to celebrate, the HCFA blog in partnership with the Children’s Mental Health Campaign will be posting a series of blogs about children’s mental health throughout the month to raise awareness.
The Children’s Mental Health Campaign (CMHC) is a coalition of families, advocates, health care providers, educators, and consumers from across Massachusetts dedicated to comprehensive reform of the children’s mental health system. The Coalition is led by five partner organizations - the Massachusetts Society for the Prevention of Cruelty to Children, Boston Children’s Hospital, the Parent/Professional Advocacy League, Health Care For All, and Health Law Advocates - and includes more than 140 supporting organizations across Massachusetts.
The Campaign has received a grant from the C.F. Adams Charitable Trust for a 3-year project whose goal is to develop a better understanding of the factors which contribute to pediatric psychiatric "boarding" and ultimately, to successfully advocate for solutions. Boarding occurs when a person in the Emergency Department (ED) requires inpatient care, but there are no appropriate psychiatric placements available, leading to longer stays in hospital EDs or on non-psychiatric medical units. To learn more about the campaign’s boarding project and advocacy efforts in general, visit www.childrensmentalhealthcampaign.org or follow us on Facebook and Twitter.
Below is Linette's family’s experience with boarding:
Creating a Supportive Village for Families in Crisis
By Linette Murphy
Linette Murphy connected with PPAL (Parent-Professional Advocacy League – a leading voice in Massachusetts for children’s mental health) several years ago when her daughter had been waiting weeks for a hospital bed. She has been involved with PPAL ever since and is also a voice for Children's Mental Health Week as she runs a Facebook group called "Where's Your Ribbon?"
Having a daughter with a significant mental health diagnosis has deeply affected our family. Our daughter, and by extension, our entire family endured the traumatizing experience of being medically boarded in an emergency room for 21 days while waiting for a pediatric psychiatric placement.
“Boarding” occurs when a patient goes to the emergency department in a mental health crisis and waits in the ED for more than 12 hours for appropriate care, in many cases for a placement in an inpatient psychiatric unit.
Our daughter was turned down by every inpatient psychiatric hospital in New England, and even some as far away as Virginia, time and again for 3 weeks. While this was an incredibly frustrating ordeal, I have chosen to remain positive. In many ways, my family was blessed throughout this traumatic experience of childhood psychiatric boarding. During the days, and weeks of waiting, I turned my anger at the broken system into social media posts where I wrote about our experience. It was with my online community that I began educating others about the issues within the mental health systems as well as built compassion amongst my friends and family. I refused to feed into the stigma, to hide, or to ashamed of what my daughter was facing. I chose to be open and honest and have the strength to have real conversations about the issues my family was dealing with. I knew that by giving voice to our struggle, we were breaking down stigma and barriers for other families.
I was fortunate to have family support and relied on them to try to maintain a sense of normalcy for my other child. My community was also incredibly supportive as they set up a Meal Train, brought meals to the house every other day for over a month and put together gifts to bring to the hospital. Other moms who had experience with boarding with their own children visited and brought coffee, and sat with my daughter long enough for me to take a shower. One insisted I take a break from the stress and took me out for lunch. When these parents had to return home and take care of their own families, yet more friends took turns taking care of my other child, making sure he got to school and his extracurricular activities. They had slumber parties, even on school nights, with their own children so that my son was taken care of while I lived in the hospital with my daughter. My support system helped me to keep going when I no longer had the strength to fight the system anymore.
On day 18 of our 21 day ordeal, seven friends cleared their busy schedules, donned green mental health awareness ribbons and went to Beacon Hill with me to get media attention, beg Senators, Representatives, and even our State Attorney General to help my daughter. My own State Representative came in to the hospital to visit my daughter and hospital administration I used the Family Medical Leave Act to take time away from my job, but I also spoke openly with my employer about the nightmare I was in the midst of battling for my daughter. My boss and my entire team at work were amazing, understanding, and compassionate. Everyone pitched in to back me up while I was out. I worked out a plan to work from the ER, nights, whenever I could squeeze it in so that I could save vacation days and keep my job. I was lucky to have a compassionate employer who understood my situation, but not everyone is so lucky. Boarding impacts families emotionally but can also create massive financial burdens. Those three weeks were the most tragic, and exhausting weeks of the life of our whole family. However, we were so incredibly blessed by having the support of so many friends, family members, neighbors, and community members. I truly believe it is because I was open and honest and didn’t feed into the stigma that mental health can bring with it.
For the many parents who are dealing with boarding, I would encourage you to speak up about these important issues. Families with children who have mental health needs often complain that we don’t get the same level of support as parents of a physically disabled child. However, I experienced an outpouring of compassion from my “village” throughout my daughter’s hospitalization and afterward. People truly want to help when they know there is a need. Throughout this ordeal, I educated those around me about the fragmented state of our mental health system and how hard it can be for children in crisis.
Things will not get better, our families will not be supported, and change will not happen until we educate others about what our children and families go through. Don’t be afraid to speak up!