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Gabe Abbondandolo

Practice Improvement Coordinator

A New Normal: Understanding the Challenges of Children with IDD

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According to the CDC, 13% of children under the age of 18 in the U.S. have a developmental disorder. Of this population, 30-50% have a co-occurring behavioral health diagnosis like depression or anxiety.

In fact, when looking at the data for Down syndrome, Williams syndrome, Cerebral palsy, autism and some forms of epilepsy, the rate of co-occurring behavioral health diagnosis is 40-70%. And children with underlying physical conditions – like Down syndrome – are in the “high-risk” COVID-19 group.

For children with co-occurring behavioral health (BH) and intellectual and development disorders (IDD), there are also developmental risks, including alcohol and/or drug use, suicidality, counseling issues and a misguided but enduring systemic belief that their quality of life will always be lower.

What’s more, there may also be significant challenges or difficulties in communication, problem solving, learning and routine social or daily living skills. A child’s intellectual disability may range from mild to more severe, and it may coexist with other disabilities.

Children with co-occurring BH and IDD are also at high risk of trying, misusing and abusing substances. And untreated psychological conditions such as depression, anxiety, conduct or oppositional defiant disorder, untreated ADHD and other learning disabilities that impact social skills and learning may increase the risk of young adults self-medicating.

For their siblings, research has shown higher levels of empathy and altruism, which sometimes show themselves in the form of the sibling assuming the role of an ally. Siblings are also imbued with an increased sense of maturity and responsibilities that, if not addressed, can lead to resentment over time.

For both children, the family plays a critical role in protecting them from harm and enhancing their wellbeing. The unique challenges that parents or caregivers encounter from their child with co-occurring BH and IDD – like behavior issues, learning difficulties and communication concerns – is exasperated in the current climate of the COVID-19 pandemic. It has led to an abrupt change in routine that, for these individuals, can be very disruptive and cause major setbacks, or even crises.

Caregivers are encouraged to keep routine as best they can, which means a regular sleep schedule, eating well and allowing time for outdoor and indoor activities; however, with physical distancing guidelines and other complexities of this pandemic (e.g., working from home, in-home support not available) introducing a new reality, this has been difficult.

During this disruptive time, it is vitally important we keep in mind those outside of our traditional bubble. While transitioning to a new normal of telehealth and physical distancing, this population is often overlooked, as they are one of the most difficult to engage through those methodologies.

We can help. Our Interest Groups are more than just an opportunity to learn and grow – they are communities in which you can share best practices, connect with likeminded peers and better understand the needs of a continuum of care for children. All children – from prevention through treatment.

We would love to begin a dialogue around what you are doing to support children with co-occurring BH and IDD. What modifications to services have you made to better serve this population? How have you increased your support of their parents during this time? Contact us to share and learn more!