PC2139: A Transition Clinic and Primary Care Medical Home for Adults with Intellectual And/or Developmental Disabilities

Purpose/Objectives: Young adults with intellectual and/or developmental disabilities and their families arrive at the critical transition point between pediatric and adult care and are often unable to find adult providers that meet their medical needs. This poor transition process has been shown to cause adverse outcomes and a decline in quality of life. We conducted a needs assessment survey in 2020 to understand the needs of our patient community and improve the process of transitioning from pediatric to adult providers. Our multifaceted transition clinic and primary care medical home for adults with intellectual and/or developmental disabilities aims to address these health disparities through a model that consists of disability-sensitive transition questionnaires, care-coordination, and both primary care and subspecialist providers who are passionate about and committed to providing optimal care for people with disabilities.

Design/Methods: The interdisciplinary team consists of medicine-pediatrics physicians, an adolescent medicine pediatrician, a medical student, a licensed clinical social worker, and self-advocates. The survey consisted of 15 questions that inquired about specialties of interest, accessibility to telehealth, telehealth vs. in-person preference, clinic structure, and disability/chronic condition.

Results: We received a total of 82 responses. 71% indicated their disability/chronic condition as Autism Spectrum Disorder. 84% reported an interest in primary care. 76% indicated interest in psychology/social work and 63% indicated interest in a navigator/case manager. Respondent priorities include care-coordination, a primary care medical home, a network of specialist providers experienced in caring for people with disabilities, disability education for all members of the care team, and telehealth availability.

Conclusion/Discussion: The stakeholder needs assessment established the value and need for a clinic specifically designed for people with intellectual and/or developmental disabilities and informed the design and development of a transition clinic and primary care medical home. Care-coordination is a continual component of the clinic workflow in that the care-coordinator follows all aspects of the patient’s care. The clinic workflow includes disability-sensitive intake questionnaires (including the TRAQ questionnaire), social-work/care-coordinator visits, primary care physician medical visits, and as-needed visits with subspecialist providers who are identified as part of the disability-sensitive referral network. Intake questionnaires are given to both the patient and their pediatric providers to foster a smooth transition that captures all aspects of the patient’s needs and goals of care. The community of adults with intellectual and/or developmental disabilities indicated an overwhelming interest in a clinic designed to best reflect their needs including care-coordination and providers educated on disability. Clinic workflow was developed to reflect community priorities from the stakeholder survey. Disability sensitivity education is provided to all care team members and a healthcare provider training on best practices for caring for people with disabilities is being developed.