Clinical Center for Adults With Neurodevelopmental Disorders

Adults with neurodevelopmental disorders (ANDDs), including intellectual disability and autism spectrum disorder, are largely underserved by dedicated specialty centers in the United States. Many ANDDs also have seizures and sensorimotor deficits. To fill the gaps in care for ANDDs, we developed the Clinical Center for Adults with Neurodevelopmental Disorders (CCAND) to provide a multidisciplinary care program. Funding for CCAND staff salaries was solicited from and allocated by the Maryland General Assembly and Governor after our fair market salary analysis determined that physician professional fees would not be adequate to pay staff salaries. We retrospectively (2019-2024) present our clinical cohort at CCAND to demonstrate one strategy to improve quality of care for ANDDs and to illustrate a fiscal model and blueprint for similar centers around the United States. CCAND operates within an academic medical center. ANDDs aged 18 and older were referred to CCAND from regional pediatric providers through care transition, from area neurologists or psychiatrists, or by self-referral. CCAND staff includes a neurologist/epileptologist and psychiatrist, 2 advanced practice providers (certified registered nurse practitioner), a social worker, a certified genetic counselor, and an administrative assistant. Over 5 years, 305 ANDDs were evaluated in CCAND with >90% follow-up rate. During the coronavirus disease 2019 pandemic, all care was delivered successfully through telemedicine. Patients were evaluated for behavioral health needs and medication management. Social work services provided counseling, connection with state-offered services, and assistance with transition to semi-independent living. A total of 131 individuals had a history of seizures requiring ongoing treatment. In total, 150 individuals had not previously undergone standard-of-care genetic ascertainment, and in 17 of 86 individuals who were genetically ascertained by chromosomal microarray or whole-exome sequencing, a new genetic diagnosis was made including copy number and single-nucleotide variants. Care for ANDDs requires a multidisciplinary team approach. Because provider professional billing does not fully cover the salaries needed for support staff, state or other sources of support are necessary. We submit that advocacy to state governments to support other CCANDs could greatly influence access to quality care for ANDDs in the United States.