By Melinda Young
Parents raising children with developmental, emotional, or behavioral issues face substantial stress. They navigate multiple healthcare visits and complex medication regimens. They also spend considerable time, energy, and money on managing day-to-day activities with their children.
Researchers studied whether adequate care coordination could improve their ability to cope with the strain, finding that it was very helpful for these families.1 About 30% of children with special needs have an emotional, behavioral, or developmental problem, including anxiety, depression, attention-deficit/hyperactivity disorder, conduct problems, autism, or cognitive or intellectual delays.1,2
“It’s very, very stressful raising a child with mental health needs, and they often have co-conditions of emotional and developmental disabilities,” says Genevieve Graaf, MS, MSW, PhD, lead study author and an assistant professor at the University of Texas at Arlington School of Social Work. “Working with these children is different from working with a kid who has just one condition of intellectual disability. The combination of issues makes them very difficult to work with, and it makes it particularly stressful for families when they have both developmental and mental health issues.”
Graaf was drawn to studying how care coordination could help these families, based on her early experience as a social worker in community-based practice working with children with emotional and behavioral conditions.
“I was trying to find the kind of support families get from community-based resources and see if that increased the level of coping,” Graaf explains. “If they have a good internal support system — [e.g.] friends, church groups — how does that compare to receiving some sort of services from a therapist, support group, or parent peer support?”
Peer support could be a parent who is trained to help caregivers navigate experiences with their children. They have experience working with these children. Personal social support may help caregivers cope. So can more formal supports, such as a group or therapist. “The most vulnerable families are those with no formal or informal social supports,” Graaf says.
Graaf and colleagues found that caregivers who receive adequate care coordination and emotional support services are likely to report positive coping with their children with special needs. They also benefit from informal sources of emotional support.1
Care coordination can help caregivers navigate the multiple therapist appointments, physician visits, meetings, services, care plans, and insurance hoops. “The whole process of managing the care and system of care is very burdensome for a lot of families — and we put all of it on families,” Graaf says.
Providing caregivers with emotional support is also important. This could be in the form of family support groups through health systems. “Connecting a family to those formal supports and community-based mental health sources and peer support would be really helpful,” Graaf adds.
Care coordination would ensure referrals are made for the family and provide follow-up. The follow-up is important and should be a priority, Graaf says. “When you just give a family a list of phone numbers, that is not good care coordination,” she notes. “In some settings, there are reasons — policy and practice restrictions — around why that has to occur. But if you have a family in crisis, any sort of burden a care coordinator can take off the family is invaluable.”
This means care coordinators or case managers contact community resources for the family and set up appointments so all they have to do is show up for their next clinic visit, Graaf says.
“Think of mental health resources they can hook into before leaving the hospital or as soon as they leave the hospital and do the intake as soon as possible so they have immediate post-acute care in the community,” she explains. “Set up the intake of any new service so all they have to do is show up for the intake, and make sure the new provider has the insurance information they need. It’s really critical.”
The level of care coordination needed is like what case managers do for older adults discharged from the hospital. “A really good hospital case manager has already contacted and created all the paperwork so all you have to do is show up with the patient at the next setting,” Graaf says. “That works very well for some patient populations, but it’s often not well coordinated for children with mental health needs.”
Every population with complex care needs should receive the same high level of care coordination. This means health systems should invest in hiring a pediatric care coordinator who knows the community’s resources for children. “We are seeing increasing rates of kids and teens in inpatient settings, presenting to the emergency department, and we lack services outside of the hospital,” Graaf says. “Sometimes, there is nowhere to send them when they leave the hospital. We just don’t have infrastructure in the community.”
The infrastructure could be available in urban areas but lacking in rural settings and healthcare deserts. “Case managers can play a key role in advocacy around this issue,” Graaf says. “If you’re at the hospital, you’re in the frontlines of seeing who is not getting the care they need.”
An important component of advocacy is meeting with state policymakers about expanding services in the community. States need to act to protect children who are experiencing a mental health crisis nationwide, particularly since the COVID-19 pandemic began. States are beginning to recognize this crisis.
“In the current environment, from state mental health administrators I work with across the country — every state I talk to says there’s an influx of state money allocated to building out mental health structures for these kids,” Graaf says. “They’re recognizing that kids are in trouble right now, and they’re allocating funding to serve these kids in the community. We’ll see the impact of that 12 to 18 months from now.”
State funding for mental health services is aimed at increasing the workforce and increasing pay to keep people in the field.
“One problem is not having enough providers,” Graaf says. “A lot of people left the workforce during the pandemic.” Other solutions include more training in mental healthcare, she adds.
Caregivers need help because their role is exhausting and leads to a lack of sleep. They worry about keeping their child safe, as well as keeping their other children safe from a special needs child who acts out.
“They have fear, stress, anxiety, and worry,” Graaf says. “A case manager can be a source of emotional support to parents through [an attitude of being] nonjudgmental, supportive, and empathetic.”
Case managers can remove at least some of the administrative burden from parents during these crisis moments. A nonjudgmental attitude is important. “A lot of parents feel very judged by providers,” Graaf says. “They talk about it. One parent said, ‘I had breast cancer, and you’d never believe how nice everyone is at the chemo clinic vs. how I am treated when I bring my kid to the mental health clinic.’”
Parents do the best they can with what they have and want the best for their children, including their children’s safety, Graaf adds.
REFERENCES
- Graaf G, Hughes PM, deJong NA, Thomas KC. Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders. J Dev Behav Pediatr 2023;Dec 21. doi: 10.1097/DBP.0000000000001230. [Online ahead of print].
- Blanchard LT, Gurka MJ, Blackman JA. Emotional, developmental, and behavioral health of American children and their families: A report from the 2003 National Survey of Children’s Health. Pediatrics 2006;117:e1202-e1212.
Parents raising children with developmental, emotional, or behavioral issues face substantial stress. Researchers studied whether adequate care coordination could improve their ability to cope with the strain, finding that it was very helpful for these families.
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