Family Voice Speaks to Behavioral Health Needs of Children and Youth
November 28, 2018
November 28, 2018
Family Champion Susan Graham wrote the creative narrative that appears below to give voice to the emotion-filled stories of family members of children with behavioral health needs. It represents a composite of the many voices that she heard while gathering information for a report on families that present to emergency departments seeking assessment and treatment for behavioral health concerns. The project was funded by The Children’s Fund of Connecticut and administered by the Child Health and Development Institute of Connecticut. The resulting report includes the family narrative below, as well as state and national data, to inform a set of recommendations for advancing policy, system development, and practice innovations that are collectively aimed at addressing this complex issue.
I am the parent of a child in the Emergency Room.
My child is struggling.
My family is struggling.
I am struggling.
My child has mental health challenges.
We need help.
We can’t get the help we need
And we don’t know where else to go.
I remember the first time my child was out of control.
I didn’t know what to do.
I didn’t know who to call.
So, we went to the Emergency Room.
Today is not our FIRST time.
We have been here before.
You see, the things we have tried are no longer working and some are no longer available to us.
I just don’t know what else to do.
I know this may not be the best experience for my child.
Most likely, it will not be the best experience for me either.
We didn’t get the help we needed the last time we were here.
I don’t think we will get what we need today either.
I don’t have a choice.
I NEED to know my child is SAFE.
I NEED to know my child will not get hurt or hurt someone else.
We NEED help.
I am so tired and frustrated.
I want my child to be well.
So, we’re at the hospital again.
I tried calling Mobile Crisis, but we could not wait 30 minutes, and they suggested we call 911 and get the police.
The police have been to our home and the school so many times they know us by name.
I could fill a binder with the safety plans we have tried
Our current plan is no longer working, and the school is concerned about safety, so off to the hospital we go.
At the hospital,
We’re waiting in the hallway.
We’ve been here several hours waiting for a room.
You see, when no rooms are available, they make us wait in the hall across from the nurse’s station.
There is no privacy in the hall.
I feel like we are on display.
Don’t get me wrong, most of the people are friendly, they smile and say hello when they walk by.
Their smiles don’t matter.
I still feel like they are judging me.
Finally, they have a room for us.
The security guard and the aide come and escort us to the room.
The door makes a loud “click” as it locks behind us and it makes me jump.
Now we are inside.
Now I can relax.
My Child is SAFE.
They don’t really do anything, but now my child is calm.
There are no signs of the aggression I experienced at home.
Then the social worker comes in and asks a bunch of questions.
“When we will meet with a psychiatrist”, I ask?
She says, “We do not have a child psychiatrist available.”
I suggest they call the community psychiatrist that we use.
The social worker responds, “we don’t do that.”
I call her myself and try to get the emergency room staff to work with our doctors
This had been helpful in the past, but they don’t seem willing to do that today.
At least this social worker is nice and understands my child’s special needs.
The last time we were here – the staff had no idea how to interact with my child
and I think she made the situation worse.
My child has fallen asleep.
My mind wanders – I start thinking about all the things we’ve tried.
I wonder if this will ever stop.
Things had been going great for a while when we had in-home services.
The team we had was very helpful.
We made progress and things were going great for several months.
We learned our clinicians were leaving.
They had gotten better jobs.
Of course, we were disappointed, but it didn’t really matter.
Because the service was about to end
Our 6 months was up.
I began to search for another program.
I found the perfect program.
Then I learned we weren’t eligible.
I was told that we didn’t have the right insurance.
I did manage to find another program.
It wasn’t perfect.
It was several towns away but the best we could get.
We decided to try it.
Soon after, we decided to stop going because the scheduling and transportation became too stressful for my child and our family.
We managed to get in-home services again.
I was so happy and so hopeful.
They sent a different team of clinicians.
Oh my GOSH, let me tell you about “the girls!”
They were lovely young women.
They were kind, caring and respectful.
They just did NOT have much experience, and very little understanding of the complexity of my child and our family’s needs.
This team was not helpful at all.
I hope the ER nurse comes back soon.
I keep wondering what will happen.
Will we be discharged in a few hours with yet ANOTHER safety plan?
I am hoping we can get into an inpatient program.
I understand it is easier to get a bed if you are in the Emergency Room.
Here she comes with some news.
“Not today,” she says, “you don’t meet the criteria for inpatient.”
We are sent home with a new safety plan and directions to follow-up with our clinicians.
So, tomorrow morning, I will begin making phone calls to schedule follow-up appointments.
I will continue searching for programs to help my child.
I hope I find something.
I hope I find something that works.
If not, I know we’ll be back to the emergency room.
Maybe next time we’ll try a different hospital?
After we get home, I wonder:
What if it were different?
What if there was a PLACE to go?
What if there was a place designed just for families like mine?
A place that could help us when things get out of control.
A place with trained people who really know how to help kids like mine.
Well, it’s nice to dream.
Maybe my dream is too big?
I know change takes time and money.
I understand that a perfect place to go may not be possible right now.
There must be SOMETHING we can do.
What IS possible right now?
What if there was someone to call?
What if there was someone who really understood what it was like?
Maybe a parent, like me, who knows what it was like to struggle and feel hopeless.
What if there was someone like that right at the hospital who could help us when we need it the most?
What if I could connect with someone like that BEFORE we ever had to go to the hospital?
What if that person connected us to resources and walked alongsideme on this journey?
What if that person could help me figure what to do the next time?
Someone who could help me develop a plan and feel confident enough to know what to do.
What if that person connected with our doctors, the school and community and weallworked together on one plan?
I would love to find a person like that.
And if we had to go to the hospital again,
What if the hospital staff knew about our plan and could easily connect with all the members of our team?
There’s a few other things I think would be helpful.
Having people at the hospital know how to interact with parents like me and kids like mine.
Having Emergency Room doctors trained to work with kids.
Having someone right there at the hospital to help parents get connected to resources, something more than a list of numbers to call.
I really hope someone can makes some changes right away.
My child needs your help.
My family needs your help.
Susan Graham is the mother of two daughters and a Family Champion in the State of Connecticut. Because Susan believes it takes a village, she founded Let’s Build IT which provides leadership development training and consultation services in the areas of children’s mental health, child welfare, and early childhood. To learn more about Susan’s work visit Letsbuildit141.com or contact her at firstname.lastname@example.org.