Autism Summit 2014 - Dr. Jean Frazier, CANDO, UMass Medical School

1

What’s New in Autism in Central Massachusetts?: A look at CANDO

CANDO

Center for Autism and Neurodevelopmental Disorders

UMASS Medical School and UMass Memorial Health Care

January 28, 2014

Extent of the Challenge

• 1 in 50 youth have an Autism Spectrum Disorder (recent CDC survey of parents)

• This rate has been increasing by 20% per year!

• 75% of children with ASD have a comorbid behavioral and physical diagnoses

• Behavioral = anxiety, ADHD, mood disorder, speech and language, sensory processing

• Physical = sleep, gastrointestinal (GI), seizures

• One of the most challenging disorders for families and providers• Emotional toll – “my child is in there somewhere”, strained

relationships, increased stress on siblings and other family members• Financial Costs - $1.4 million to care for person with autism over their

lifetime; $2.3 million if there is also intellectual disability

2

Executive Function:Hyperactivity, Impulsivity, Inattention

Social Interaction/“Empathy”:?Shyness/Social Phobia,Disinterest/Schizoid,“Hostile Intent”/Schizotypal

Asperger’s

Restricted interestsRigid behaviorStereotypic behaviorCompulsions

Communication:Thought Disorder, Disordered Pragmatics

Autism

Dysregulated Emotion:Anxiety, Depression, Mania

Comorbidities

National Survey on Child Health (Gurney et al, 2006)

Children with autism vs. typical children had more:• Depression or Anxiety• Behavior or Conduct Problems• Physician Visits• Treatment for Emotional, Developmental or Behavioral

Problems (75.4% vs. 7.0%)• Prescribed Medications (51.4% vs. 14.5%)

Extent of the Challenge

• In Central Massachusetts, the majority of children receive their initial diagnosis through evaluations from Primary Care Physicians (PCP)

• Most PCP’s are challenged to secure assistance in making the initial and differential diagnoses and in the development and implementation of an individualized treatment plan

• Therefore, families are typically referred to and are required to travel to Boston clinics for further or confirmatory diagnostic evaluations, where the average wait time is 9 – 18 months

•This is particularly challenging for families with limited financial resources and/or family support

•More PT1 Vouchers are used to transport families to Boston from Central MA, thus costing the state more money

5

6

Clinic Access

Autism Consortium SymposiumOctober 25, 2011Boston, MA

Limited availability of diagnostic clinics in central and western MA

Objectives

• Introduction of CANDO within the Division of Child and Adolescent Psychiatry at UMASS Medical School and UMass Memorial Health Care, University Campus

• Provide cost-effective and clinically-sound evaluation and short-term treatment for children with complex comorbid medical and behavioral presentations, which allows for efficient servicing of more children

8

Vice Chair & Medical Director - Jean A. Frazier, MD

Executive Director UMMBHS- William O’Brien, MSW

Program Director – Mary Beth Kadlec, ScD, OTR/L

Assistant Medical Director – David M. Cochran, MD, PhD

Pediatric Neurologist – Christy Stine, MD, PhD

Pediatric Neurologist – Andy Zimmerman, MD

Speech/Language Pathologist – Susan Swanson, MA, CCC-SLP

Autism Resource Specialist – Kelly Hurley

Executive Secretary – Stephanie Hitchew-Marazoff

Currently interviewing for:

Board Certified Behavior Analyst (BCBA)

Occupational Therapist

CANDO Team

Family Perspective

Putting the Pieces Together

Service Delivery Drivers

• Caregiver’s Capacity•Do the caregivers understand and agree with report findings?

• Coordinated Care•Were caregivers concerns addressed in the evaluation process?

•Were practical strategies recommended and resources provided for families?

• Age of Child

• Insurance

• Town

CHILD

Caregivers/Family

Town

School

Insurance

Caregivers/Family

Medical

Traditional Service Delivery

Waiting for Validation and Services

• Waitlist can be up to 1.5 years for an evaluation

• Families seek alternative means to get a diagnosis

• Child and family miss out on valuable services

• More difficult and more expensive when there is a delay in diagnosing and treating

• Family health is negatively impacted

CHILD

Caregivers/Family

Town

School

Insurance

CANDO

Medical

CANDO Service Delivery

Solution = CANDO

Long term

Provide a permanent integrated clinical, research and teaching clinic for patients with ASD and Neurodevelopmental Disorders across the lifespan.

Most Immediate

Launched a first-ever single point of entry in Central and Western Massachusetts for interdisciplinary evaluations, short term treatment, and care coordination for youth and their families with complex comorbid medical and behavioral presentations.

14

CANDO Clinical Approach

• Families identify their hopes and expectations for the evaluation

• This information drives the evaluation and treatment for each youth and family. Family members actively participate in the evaluation and treatment to provide strategies that are relevant for them and their situation

• Focus is on accurate diagnosis with effective and comprehensive short-term treatments

• Taking referrals for youth who have a PCP with a UMASS affiliation

• Applicable clinical activities will be billed to available insurers

15

16

Stage 1 – Evaluation Stage 2 – Treatment Stage 3 - Transition

Required Specialties Required Specialties Required SpecialtiesFamily Members Family Members Family MembersPsychiatrist Psychiatrist PsychiatristNeurologist Occupational Therapist Occupational Therapist

Developmental Behavioral Pediatrician (DBP)

Speech and Language Therapist Speech and Language Therapist

Occupational Therapist

Speech and Language Therapist

Developmental Pediatrician

Family Resources Specialist Family Resources Specialist Family Resources Specialist

Board Certified Behavior Analyst (BCBA)

BCBA BCBA

Case Manager Case Manager Case Manager

Utilized as Needed Utilized as Needed Utilized as NeededSleep Expert Sleep Expert Sleep ExpertGeneticistGastroenterologist Gastroenterologist Gastroenterologist

Evaluation and Treatment Model

CANDO Story

“We’ve seen an immeasurable difference…”

Mother and Grandmother of “Josh”

17

“Tapas” Menu• Evaluation and short term intervention•Anxiety Disorders

•Psychosis

•Autism – Psychiatry and Neurology

•ADHD Clinic

•Speech and Language Therapy

•Occupational Therapy

• To Start within the next 6 months•Mood Disorders Clinic

•Consult Liaison Continuity Clinic

•High End Neuropsychological Testing Clinic

•BCBA

18

CANDO Location and Contact Information

• Located on the 7th floor of the Medical School building •55 Lake Avenue North, S7-714

Worcester, MA 01655

• Phone 774-442-2263•Fax 774-442-2270

19

20

Light it Up Blue

Celebrating Autism Awareness and Acceptance