Clinical Scorecard: Examining Structural Barriers in Healthcare Transition for Adults with Intellectual and Developmental Disabilities

At a Glance

Key Highlights

• Transition from pediatric to adult healthcare is fraught with challenges for individuals with I/DD.
• Structural ableism in healthcare creates barriers to access and quality care.
• Less than one-quarter of children with special healthcare needs received help in transition planning prior to the COVID-19 pandemic.
• There is a shortage of healthcare providers willing to work with adults with I/DD.
• The transition period is associated with increased disease exacerbations and emergency room utilization.
• The COVID-19 pandemic further disrupted transition planning and access to care for adults with I/DD.

Guideline-Based Recommendations

Diagnosis

• Recognize the unique needs of adults with I/DD during healthcare evaluations.

Management

• Implement structured transition planning programs tailored for individuals with I/DD.
• Train healthcare providers to recognize and address structural ableism in their practices.

Monitoring & Follow-up

• Continuously assess the healthcare access and outcomes for adults with I/DD.

Risks

• Be aware of the increased risk of hospitalization and emergency care during the transition period.

Patient & Prescribing Data

Adults with I/DD who have aged out of pediatric services.

Need for coordinated care and specialized services to manage complex health needs.

Clinical Best Practices

• Advocate for the inclusion of caregivers in healthcare discussions for non-verbal patients.
• Develop adult healthcare systems that accommodate the specific needs of individuals with I/DD.
• Train healthcare providers to recognize and address structural ableism in their practices.
• Encourage interdisciplinary collaboration in managing care for adults with I/DD.

Related Resources & Content

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