A novel subspecialty medical home program for individuals with neurodevelopmental disabilities: Part 1: Structure and outcomes By Deborah bilder, md. Associate Professor, Department of Psychiatry, Division of Child & Adolescent Psychiatry Adjunct Associate professor, Departments of pediatrics and educational psychology Medical Director, Neurobehavior HOME Program Medical director, Autism spectrum Disorder Clinic University of Utah

Disclosures Consultant, advisory board and steering committee member for BioMarin Pharmaceuticals Consultant and scientific and clinical advisors board member for Audentes Therapeutics

Overview Intro to HOME Role of a subspecialty medical home Advancing clinical care through research

Neurobehavior HOME Program A novel, Medicaid-funded medical home model for patients with developmental disabilities throughout their lifespan provides primary care and behavioral health care in one setting A financially viable University-based multidisciplinary clinic Over 1100 enrollees Created by Josette Dorius, RN, MPH and Scott Stiefel, MD in 2000.

An approach to providing comprehensive primary care The Medical Home An approach to providing comprehensive primary care Defined as primary care is: Continuous --Accessible Culturally effective --Coordinate -- Compassionate --Comprehensive -- Family-centered Improves patient outcomes

Fiscally viable funding in a nutshell Combine capitated medical and behavior health funds from Medicaid Co-locate medical and behavior health outpatient services Serve Medicaid’s most expensive patient population Provide preventative and proactive outpatient care to reduce one of the most costly components of care for this population – psychiatric hospitalizations

Managing outbursts By recognizing agitation as a final common final pathway for many underlying causes rather than the treatment target itself, HOME provides a fiscal viability way of optimizing health and functioning, living in the community

Person-centered Approach Design of services for individuals with diverse needs and desires. Each person, regardless of ability, is worthy of respect. Our clients with developmental disabilities have the right to set their own goals and objectives to the best of their ability.

HOME structure Case Management: communication facilitators – with families, within clinic, with outside specialists, hospitals, community agencies Medical: pediatrics, family medicine, nurse practitioners, nutritionist Outpatient visits, immunizations, phlebotomy, EKG, nutrition group Behavioral health services: triple board/psychiatrists, nurse practitioners, therapists, behaviorists, Individual/group sessions, feeding clinic, in-home intensive support “Sister” program – Autism Spectrum Disorder Clinic Specialty psychological evaluations, early intervention, social skills group 60 employees

Individual therapy

Identifying comorbid conditions Physical discomfort (pain) Medical condition (metabolic disorder, endocrine, seizure disorder, sleep disorder) Medication side effect Functional Behaviors (behaviors which “work” for the child) Social stressors Psychiatric disorder

In children and adolescents with autism One Mini PAS-ADD item for OCD overlaps with an ASD criterion (excessive repetition of an activity resulting in functional impairment). When this item was removed from scoring, 22 %(n = 29) continued to meet lifetime OCD case status. In children and adolescents with autism At least 72% had at least one additional psychiatric diagnosis specific phobia (44%) Obsessive Compulsive Disorder (37%) ADHD (31%) Major Depressive Disorder (10%) Oppositional Defiant Disorder (7%) > 1 was common (Leyfer et al 2006) Buck TR, et al. J Autism Dev Disord 2014

Team approach One-hour visits with clients, their caregivers, and their providers to get to the source of our client’s distress.

Mortality in Autism spectrum Disorder N=305 Utah adults with ASD, 73% with co-occurring ID 9.5% (n=29) died during follow-up period 9.9 (CI 5.7-17.2) Hazard rate ratio Bilder, et al. J Autism Dev Disord 2012

Research

Antipsychotic use in HOMe 60.4% taking antipsychotic medication More likely to be taking medication Males Intellectual disabilities Co-occurring intellectual disabilities and ASD Less likely to be taking medication Ages 4-14 years Ages >60 years Triple insurance coverage

Metabolic monitoring at Home

Big Picture Subspecialty HOME Program provides a fiscally viable means of taking good care of medically and behaviorally challenging patients Person-centered approach is a respectful and effective means of reducing disruptive behavior Blending research and clinical care allows us to share what our clients teach us with our collective community of providers, caregivers, and individuals with neurodevelopmental disabilities

acknowledgements HOME Program Team Our enrollees and their families

Psychiatric Comorbidity in ASD Without ID With ID Any diagnosis 80-99% Anxiety 50-56% Depression 45-70% Bipolar 8-9% Psychotic Disorder 4-12% Substance dependence 7-16% OCD 24% Any diagnosis 35-48% Anxiety 4-8% Depression 6-20% Bipolar 11% Psychotic Disorder 6-18% Tourette 2-4% Catatonia 12% Catatonia, severe motor initiation problems, Billstedt ID: Billstead. DISCO, 2-4 hr investigator-based interview, psychiatric exam; Morgan: psychiatric case notes and history; Melville: PAS-ADD Checklist for screening, then if clarification required, psychiatric assessment, review of records; Present psychiatric state for adults with learning disabilities (PPS-LD) No ID: Lugnegard: Structured Clinical Interview for DSM-IV (SCID). Hofvander: SCID or clinical interview with lifetime DSM-IV symptom checklist Lugnegard 2011, Hofvander 2009, Morgan 2003, Billstedt 2005, Melville 2008