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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
1
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
Comorbidities
Communication:
Thought Disorder,
Disordered Pragmatics

Executive Function:
Hyperactivity, Impulsivity, Inattention

Dysregulated Emotion:
Anxiety, Depression, Mania
Social Interaction/“Empathy”:
?Shyness/Social Phobia,
Disinterest/Schizoid,
“Hostile Intent”/Schizotypal

Asperger’s

Autism

Restricted interests
Rigid behavior
Stereotypic behavior
Compulsions
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
Clinic Access
Limited availability of diagnostic clinics in central and western MA

Autism Consortium Symposium
October 25, 2011
Boston, MA

6
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
CANDO Team
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

8
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
Traditional Service Delivery

CHILD
Caregivers/Family

Town

Insurance

School

Medical

Caregivers/
Family
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
CANDO Service Delivery

CHILD
Caregivers/Family

Town

Insurance
CANDO

School

Medical
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
Evaluation and Treatment Model
Stage 1 – Evaluation
Required Specialties
Family Members
Psychiatrist
Neurologist
Developmental Behavioral
Pediatrician (DBP)
Occupational Therapist
Speech and Language
Therapist
Family Resources Specialist

Stage 2 – Treatment
Required Specialties
Family Members
Psychiatrist
Occupational Therapist
Speech and Language Therapist

Stage 3 - Transition
Required Specialties
Family Members
Psychiatrist
Occupational Therapist
Speech and Language Therapist

Developmental Pediatrician
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 Needed
Sleep Expert
Geneticist
Gastroenterologist

Sleep Expert

Sleep Expert

Gastroenterologist

Gastroenterologist

16
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
Light it Up Blue

Celebrating Autism
Awareness and Acceptance

20

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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 1
  • 2. 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
  • 3. Comorbidities Communication: Thought Disorder, Disordered Pragmatics Executive Function: Hyperactivity, Impulsivity, Inattention Dysregulated Emotion: Anxiety, Depression, Mania Social Interaction/“Empathy”: ?Shyness/Social Phobia, Disinterest/Schizoid, “Hostile Intent”/Schizotypal Asperger’s Autism Restricted interests Rigid behavior Stereotypic behavior Compulsions
  • 4. 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%)
  • 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 Limited availability of diagnostic clinics in central and western MA Autism Consortium Symposium October 25, 2011 Boston, MA 6
  • 7. 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. CANDO Team 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 8
  • 10. 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
  • 12. 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
  • 14. 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
  • 15. 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. Evaluation and Treatment Model Stage 1 – Evaluation Required Specialties Family Members Psychiatrist Neurologist Developmental Behavioral Pediatrician (DBP) Occupational Therapist Speech and Language Therapist Family Resources Specialist Stage 2 – Treatment Required Specialties Family Members Psychiatrist Occupational Therapist Speech and Language Therapist Stage 3 - Transition Required Specialties Family Members Psychiatrist Occupational Therapist Speech and Language Therapist Developmental Pediatrician 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 Needed Sleep Expert Geneticist Gastroenterologist Sleep Expert Sleep Expert Gastroenterologist Gastroenterologist 16
  • 17. CANDO Story “We’ve seen an immeasurable difference…” Mother and Grandmother of “Josh” 17
  • 18. “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
  • 19. 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 20