Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities.
A Transition Clinic helps only if you also fix the doctor’s time, training, and payment hurdles.
01Research in Context
What this study did
McCauley et al. (2018) opened a Transition Clinic for youth with intellectual or developmental disabilities. They asked primary-care doctors to use the clinic’s checklists, phone consults, and hand-off forms.
The team tracked how many doctors used each tool and asked why some did not. They also noted which parts of the clinic felt helpful.
What they found
Doctors liked the clinic and said the tools were clear. Still, most used only one or two items. Time, short visits, and insurance rules got in the way.
The study shows a helpful clinic is not enough. Workflow and policy fixes are needed too.
How this fits with other research
McGeown et al. (2013) heard the same story from families. Parents said plans started late and information was hard to find. B et al. tried to fix those gaps with a clinic, but the same barriers popped up again.
Smith et al. (1997) and Christian et al. (1997) warned us twenty years earlier. GPs already felt they lacked training and time for extra tasks. The new clinic gave tools, yet the old barriers stayed put.
Warfield et al. (2015) looked at adults with autism and found the same multi-level blocks: systems, practice, and training. Together these papers trace one long line—PCPs want to help but need support at every level, not just a new form.
Why it matters
If you coach teens with IDD, do not assume the doctor will read your report. Offer a one-page summary and a phone time that fits into a 5-minute nurse call. Push insurers for visit codes that pay for care planning. Without these workflow tweaks, even the best clinic hand-off sits unused.
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02At a glance
03Original abstract
Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.
Intellectual and developmental disabilities, 2018 · doi:10.1352/1934-9556-56.1.56