Gretchen Emond and Anna Dellarosa have a relationship forged from years of common experience.
“We are parents with lived experience raising a child with a mental health challenge,” said Emond, a family support therapist and co-director of The Support Network, which assists families in the difficult task of navigating the mental health system.
The two women sat recently in Dellarosa’s living room in Turners Falls, Massachusetts. Dellarosa is one of Emond’s clients.
“I wouldn't even know where my mind would be if I did not call this woman and say, ‘I'm losing my mind,’” Dellarosa said, nodding toward Emond. “‘Could you give me advice really quickly, so I can just take a deep breath and just go, you know, the next few hours?’”
Emond played a critical role in advising Dellarosa as she raised her now-grown children, both of whom struggled with mental health issues. That might have been the culmination of their relationship if Dellarosa’s three great-nieces hadn’t suddenly needed her to become a parent all over again.
“And here I go,” Dellarosa said. “I stepped up with DCF. I took over and I am guardian of the children until they’re 18. Three beautiful little girls, 12, 7 and 2. And I wouldn’t change it for the world.”
But Dellarosa’s tone changed quickly when describing the mental health challenges her nieces face.
“Now these girls have been traumatized,” she said.
Dellarosa was careful not to share too much of her nieces’ stories, but the outcomes of their experiences are severe.
“It's maximum depression, anxiety, panic attacks,” she said.
Other diagnoses include PTSD and ADHD.
“One of the children, she's very ADHD. She's a sick baby. She has nightmares a lot,” Dellarosa said.
On the waitlist
A 2019 study in the Journal of the American Medical Association found that 7.7 million U.S. children had a treatable mental health disorder, but only half were being seen by a mental health professional. One reason: a long-term shortage of child therapists.
Dellarosa has come up against this shortage numerous times while searching for therapists for her nieces.
“It took [the agency] a very long time to get back a hold of me,” she said.
Long as in a year.
“I just felt a bit overwhelmed,” she said. “Like I wasn’t getting the services I needed.”
Overwhelmed parents trying to figure out the mental health bureaucracy: according to Emond, that’s a bad combination.
“It's very complicated,” Emond said. “And we tell parents all the time, if you are on a waitlist, you need to call frequently, because for some reason, your name will disappear from that waitlist. Nobody should be on a waitlist for a year. For any service.”
The shortage of pediatric psychiatrists is especially acute, although like most things in health care, access depends on where you live.
The American Academy of Child and Adolescent Psychiatrists says for every 100,000 children, there should be at least 47 child psychiatrists.
In western Massachusetts, only Hampshire County meets that threshold, according to the organization. Hampden County's rate is less than a quarter of the recommended level. Statewide, Massachusetts has among the highest rates in the country, yet still falls short of the recommendation.
Collateral
Amanda Harrison is director of The Children’s Clinic, part of Cutchins Programs for Children and Families in Northampton. She said the shortage of child mental health care providers — including psychiatrists as well as therapists — has numerous causes, most of which come down to money.
“It comes back to fair reimbursement for the work that people are putting in, and that really does get driven by the insurance companies,” Harrison said.
Picture your average adult therapist. They see their client once a week and bill insurance for the visit.
Now consider the role of the child therapist, who’s in frequent consultation not only with their kid client, but also with the kid’s parents and teachers, and maybe their special education provider or their speech pathologist.
All those extras are called collateral. Frequently the therapist is not reimbursed by insurance companies for collaterals, Harrison said.
A 2017 report from the Blue Cross Blue Shield Foundation (PDF) says, “Stakeholders overwhelmingly reported that reimbursement rates for mental health services are not adequate in Massachusetts.”
MassHealth is one insurance provider that does cover collaterals, but according to the same report, the overall reimbursement rates from MassHealth are lower than commercial providers.
Harrison said the math is both simple and discouraging.
“When you sort of divide out, OK, insurance paid us for one hour, but two hours of work went in. [Therapists] really are working for less money,” she said.
In Northampton, Cutchins uses a grant from the United Way to help cover staff time on collaterals, but many children’s clinics and child therapists do the work for less pay. Some simply can’t do all the work that’s required for quality care.
The impact of this is enormous, Harrison said, because treating kids early makes a difference.
“If we're able to treat younger [patients], we have healthier adults, we have more engagement in community, we have less likelihood of repeating the cycles of trauma and addiction,” she said. “But you have to have the folks who can provide the services to the kids.”
Harrison said burnout is frequent in her profession, not only because the work of child therapists is undervalued, but also due to the level of exposure therapists have to their clients’ trauma.
“At the end of the day, we're human beings working with other human beings,” she said. “And as much as we can have professional training to ‘leave it at work,’ the reality is we have a very taxing and draining job.”
‘I give it all to you, Nana’
Many agencies have high turnover rates among their staff. Even after Anna Dellarosa found therapists for her nieces, communication was spotty, and she was never certain which therapist would show up.
Gretchen Emond said the lack of consistency is counterproductive.
“When a child knows that every Wednesday at 3, they're going to meet with their therapist, and then [that therapist is] gone, and we don't know why, that's not very therapeutic,” Emond said.
In a system where the necessary care is hard to find, it falls on parents and guardians to hold everything together. This was true before the pandemic, and all the more so now. Dellarosa recently took a leave from her job as a personal care assistant to be home for her nieces.
“I just found that mentally and emotionally they needed me here. So I had to make a choice. So I had to apply for assistance in October,” she said.
It’s hard to tell who Dellarosa worries over more, her 12-year-old suffering from panic attacks, or the middle child, whose extreme ADHD has recently put the family’s housing situation at risk. It doesn’t help that, during this long pandemic year, the kids have been home most of the time.
Sometimes Dellarosa has to chase her niece and hold her to keep her from banging the floor.
“I don't think she has control over that,” Dellarosa said. “So I am scared of losing my place to live. Because I know that could happen. Because it's too much noise.”
Dellarosa said that sometimes after a mad burst of energy, the middle child will come over and sit on her lap.
“She'll come over to me after a little bit,” she said. “And she'll ask me, ‘Could I ask you something about Papa Dios?’ That means Father God. And I said, ‘Sure, what do you want to ask?’ And she said, ‘I need to ask him if he can help me stay still and stop shaking and jumping everywhere.’”
They’ve developed a routine. In addition to taking her medication, the child will sometimes “shake off” her excess energy and, in her words, “give it” to Dellarosa, who she calls her “Nana.”
Dellarosa goes along with it — and said that at this point in the pandemic, she’ll take all the extra energy she can get.
“She'll come up, hug me, shake it off,” Dellarosa said, before imitating the child's voice. “‘Now you have it, and I give it all to you, Nana. Go ahead, go clean the house, do what you got to do.’”
Challenging conditions
The shortage of child therapists that Dellarosa encountered is, in many ways, a fuel that exacerbates other deficiencies and shortages in the mental health care system.
These include a dearth of youth psychiatric hospital beds and a revolving door of acute treatment, in which patients often end up back in overcrowded emergency rooms due to inadequate outpatient care in their communities.
Clinicians I spoke with all said the shortage of child therapists didn’t start with the pandemic. And numerous studies, like a 2019 article and commentary in the journal Pediatrics, show that the number of kids in the ER for mental health emergencies was on the rise even before March 2020. The system has been prohibitively bureaucratic — and the labor of child mental health providers has been undervalued — for years.
The pandemic has only made these conditions worse.
But somewhat to my surprise, the parents I spoke with for this series each expressed a sense of hope. They said the pandemic’s exposure of deficiencies in mental health care could lead to a growing awareness, even an urgency, about what it will take to truly care for the mental health of our kids.
This is the third report in a three-part series about the challenges faced by families seeking mental health care for children and adolescents in western Massachusetts. Read part 1 here, and read part 2 here.
