1. 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

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

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

4. 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.

5. 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

6. 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

7. 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

8. 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.

9. 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

10. Individual therapy

11. 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

12. 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

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

14. 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 ) Hazard rate ratio
Bilder, et al. J Autism Dev Disord 2012

15. Research

16. 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

17. Metabolic monitoring at Home

18. 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

19. acknowledgements
HOME Program Team
Our enrollees and their families

20. 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