Developmental Disabilities Intervention: Right Care, Right Time, Right People, Right Context

Developmental Disabilities Intervention:

Right Care, Right Time, Right People, Right Context

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Executive Summary

Nations are spending billions on developmental disability interventions that too often lack fidelity, effectiveness, or accessibility. Meanwhile, hundreds of children and youth remain on long waitlists, many in rural areas receive no services, and families with the highest-need children often go without support.

Decades of research show that the most effective and cost-efficient interventions occur when care is:

• Delivered in natural environments and daily routines

• Inclusive of parents and natural caregivers

• Provided with fidelity to evidence-based practices

We must restructure its system to financially incentivize contextualized, parent-coached interventions and expand telehealth options. Doing so will increase capacity, improve outcomes, and reduce long-term costs to Medicaid, schools, and corrections.

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Background

“The right care, in the right place, at the right time” is a widely accepted health care standard (Brumsted, 2019). In developmental disability services, this means aligning interventions with the child’s environment, daily routines, and natural supports.

Research consistently demonstrates that contextualized interventions—those provided at home or in the community, during typical routines, and with caregiver involvement—produce the best developmental and behavioral outcomes (Dawson et al., 2010; Bearss et al., 2015).

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The Problem

1. Resource Misallocation: Billions of dollars are spent annually on less effective services while many children remain unserved.

2. Waitlists: Families often wait 6+ months for intervention, undermining early intervention outcomes.

3. Rural Disparities: Families outside metro areas often receive no services beyond the Infant Toddler Program.

4. High-Need Children Left Behind: Those with the most challenging behaviors are least likely to receive sustained support.

5. Poor Fidelity: Services billed as “evidence-based” often lack adherence to research protocols.

6. Provider Skills Gap: Many providers lack the skills to coach parents and embed intervention into natural routines.

7. System Fragility: Systems are unprepared for pandemics or other disruptions that limit in-person service.

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Evidence-Based Solutions

1. Incentivize Contextualized Care

• 5% increase for services delivered off-hours (evenings, weekends).

• 5% increase for services delivered in natural environments with caregiver coaching.

• 10% increase for services delivered to the most at-risk children/youth.

2. Expand Telehealth

• Enable robust telehealth options to reach rural families and reduce waitlists.

• Research confirms telehealth-delivered parent coaching is effective (Vismara et al., 2016; Colombi et al., 2016).

3. Prioritize Fidelity

• Require adherence to validated models (e.g., ESDM, ABA with fidelity, P.L.A.Y., JASPER, PACT) rather than labeling services “evidence-based” without proof of fidelity.

4. Empower Parents

• Parents are the most consistent interventionists. Parent-mediated models such as PACT, P.L.A.Y., JASPER consistently improve child outcomes and reduce parental stress (Bearss et al., 2015; Kasari et al., 2014).

• As Rogers (2019) emphasized: “We need to stop training children and start training parents.”

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Cost-Effectiveness

• Parent-mediated interventions cost a fraction of center-based services while producing equal or better outcomes (Colombi et al., 2016).

• Failure to provide timely, effective care increases downstream costs: juvenile justice involvement, Medicaid-funded placements, and long-term dependency services (JAMA Pediatrics, 2016).

• Contextualized care reduces reliance on expensive, low-yield interventions, improving both outcomes and fiscal sustainability.

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Policy Recommendations

1. Restructure Medicaid and state reimbursement models to reward contextualized, parent-coached services.

2. Integrate telehealth as a permanent option for developmental interventions, especially for rural families.

3. Prioritize high-need children and youth by incentivizing providers to accept and retain them.

4. Mandate fidelity monitoring for all services billed as “evidence-based.”

5. Invest in provider training for caregiver coaching and natural environment delivery.

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Conclusion

Current system often provides the most services to the easiest-to-serve children, in the least effective contexts. To meet rising demand without massive new spending, we must empower families, incentivize contextualized care, and expand telehealth.

By aligning funding with evidence-based practices, governments and providers can deliver the right care, at the right time, with the right people, in the right context—helping children and families achieve their best lives while saving taxpayer dollars.

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Selected References

• Dawson, G., Rogers, S., et al. (2010). Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model. Pediatrics, 125(1), e17–e23. https://doi.org/10.1542/peds.2009-0958

• Vismara, L., McCormick, C., et al. (2016). Telehealth Parent Training in the Early Start Denver Model. Focus on Autism and Other Developmental Disabilities.

• Smith, T., & Eikeseth, S. (2011). O. Ivar Lovaas: Pioneer of Applied Behavior Analysis and Intervention for Children with Autism. JADD, 41, 375–378.

• Bearss, K., Johnson, C., Smith, T., et al. (2015). Effect of Parent Training vs Parent Education on Behavioral Problems in Children With Autism Spectrum Disorder. JAMA, 313(15), 1524–1533.

• Kasari, C., Freeman, S., & Paparella, T. (2014). Joint Attention and Symbolic Play in Young Children With Autism. Journal of Child Psychology and Psychiatry.

• Wood, W., Quinn, J., & Kashy, D. (2002). Habits in Everyday Life: Thought, Emotion, and Action. JPSP, 83(6), 1281–1297.

• JAMA Pediatrics. (2016). Cost-effectiveness of interventions in autism spectrum disorder.