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Autism Summit 2014 - Dr. Jean Frazier, CANDO, UMass Medical School
- 1. What’s New inAutism 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 theChallenge • 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 ExecutiveFunction: 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 onChild 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 theChallenge • 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 availabilityof diagnostic clinics in central and western MA Autism Consortium Symposium October 25, 2011 Boston, MA 6
- 7. Objectives • Introduction ofCANDO 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
- 9. Family Perspective Putting thePieces Together
- 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
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- 12. Waiting for Validationand 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
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- 14. Solution = CANDO Longterm 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 TreatmentModel 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 seenan immeasurable difference…” Mother and Grandmother of “Josh” 17
- 18. “Tapas” Menu • Evaluationand 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 andContact 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 UpBlue Celebrating Autism Awareness and Acceptance 20