The research article “Children with Intellectual and Developmental Disabilities and Mental Health Challenges: Caregiver Familiarity with Clinical Services,” recently published in the journal Intellectual and Developmental Disabilities, sheds a light on the disparity of mental health services – and the knowledge of what is available – for children and youth with intellectual and developmental disabilities (IDD).
Although children with intellectual and developmental disabilities (IDD) more often experience mental health concerns, they do not always receive mental health services. This study examined the barrier of caregiver familiarity with services. Analyzing a statewide survey of 137 caregivers of children with IDD and mental health concerns, high percentages (35 percent to 60 percent) were unfamiliar with common school-based child, community-based child, and (community-based) family mental health services. Especially regarding family services (such as family therapy, behavioral parent training, caregiver therapy), caregivers did not know what services to ask for or where to find them.
Verity Rodrigues, M.S., Ph.D.
“As part of my role as the Tennessee Children’s Mental Health Champion, I had conversations with members of the disability community to get a better understanding of the current state of children’s mental health services across Tennessee, particularly for children with developmental disabilities,” said VKC Mental Health Initiatives Associate Director Verity Rodrigues, Ph.D. “These conversations pointed to different issues regarding access to mental health services, including lack of services especially in rural parts of our state, long waitlists, high cost of services, and lack of parental knowledge of the types of mental health services available and where to access them.
“Recognizing that parents and caregivers are the ones accessing services for their children, it became apparent that we needed to learn more about parents’ knowledge of mental health services across the state and what they identified as common barriers to obtaining these services for their children, adolescents, and young adults with developmental disabilities,” Rodrigues added.
Having a child diagnosed with a disability is, in some circumstances, the first step in being able to access mental health services. However, knowing about and being able to access those services is far from intuitive, research found.
“Although parents whose children received a formal clinical diagnosis were more familiar with both school-based and community-based child mental health services, including individual counseling within schools and the community, there was no difference in familiarity of mental health services for parents of children who had received Individualized Education Programs (IEP) and those who had not,” said Rodrigues.
Researchers hope that, by shining a light on the limited availability and visibility preventing children with IDD from receiving needed mental health services, attention may be shifted toward individuals’ needs for support and caregivers’ lived experiences navigating fragmented systems.
One research participant, a parent of a 21-year-old, shared: “My son has not had a therapist. We are looking, but there is not much information about where to go or what to do. I feel lost. I need information about where to take my son and how to help him, but I’m still looking and I’m not going to give up.”
“Our findings suggest that many families are not just facing a lack of services, but a lack of clear information about what exists, what to ask for, and where to turn, especially for family-based supports,” said Rodrigues. “My biggest suggestion for parents and caregivers is to know that feeling confused and overwhelmed is not a reflection on them, but rather a reflection of how complex and fragmented these systems are.”
“I would also encourage parents to trust your own observations and instincts – you know your child best,” Rodrigues said. “Asking your child’s school psychologist, school counselor, or pediatrician specific questions about what types of mental and behavioral health services are available and what they are called is a good first step. Connecting with other families through support groups, advocacy organizations, or informal networks can be a powerful way to learn about services and service providers who work with the IDD population.”
Lastly, she suggested some credible statewide organizations that can be helpful for connecting to resources such as Tennessee Disability Pathfinder, The Arc Tennessee’s Family Engagement in Special Education, Family Voices of Tennessee, and VKC TRIAD’s family-focused resources and programming.
“I hope this research encourages professionals, systems, and policymakers to prioritize caregiver education, improve cross-system coordination, and more intentionally include mental health services as part of comprehensive care for individuals with IDD.”
Sulmonetti, L. C., Rodrigues, V. L., Herrera Espinosa, G., & Hodapp, R. M. (2026). Children with Intellectual and Developmental Disabilities and Mental Health Challenges: Caregiver Familiarity with Clinical Services. Intellectual and Developmental Disabilities, 64(2), 160–172. https://doi.org/10.1080/19349491.2026.2635300
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