Ann T. Cutler, MDacutler@uic.edu

Department of Disability and Human Development

College of Applied Health SciencesUniversity of Illinois at Chicago

Supports and Gaps for

Children with Autism

Disability Rights Consortium 7-22-09

Disclosure Information I have no relevant financial relationships

with the manufacturer(s) of any commercial product(s) and/or provider of commercial services discussed in this presentation.

I do not intend to discuss commercial products or services and unapproved/investigative uses of a commercial product/device in my presentation

Building CapacityScreening

Diagnostic Services

Treatment

Family Support

The Combating Autism Act Authorizes approximately $920 million for

expanded activities related to autism spectrum disorders over a five-year period (FY2007-FY 2011).

Activities covered under the act include screening, surveillance, education, early intervention, prompt referrals for treatment and services, and research.

For more information: http://mchb.hrsa.gov/autism/default.htm

Combating Autism Act Initiative Programs Leadership Education in Neuro-

developmental & Related Disorders (LEND) Training programs

Developmental-Behavioral Pediatrics Training Grants

Resource Centers State Demonstration Grants Research Networks and Nodes

What is LEND?

Leadership Education in Neurodevelopmental Disabilities

Overarching Goal: Provide continuing education, consultation and technical assistance geared to the needs of MCH Health professionals, policymakers and families

Funded by Maternal and Child Health Bureau (MCH)

Based on the Combating Autism Act

A national network of LENDs (www.aucd.org)

Illinois LEND: A Partnership

University of Illinois at Chicago:

IDHD Family Clinics and Units

UIC Autism Center of Excellence

The Autism Program (TAP) of Illinois

Children’s Mental Health and Developmental Neuroscience Center

University of Chicago: Developmental and Behavioral Pediatrics

Rush University: Speech and Hearing

Collaboration with community agencies and Illinois Title Five Maternal and Child Health (MCH) Programs

LEND Disciplines

Child Psychiatry Disability Studies Family Nursing Nutrition Occupational Therapy Pediatrics Physical Therapy Psychology Public Health Social Work Speech and Hearing

What’s Happening In Medicine???

American Academy of Pediatrics Policy

It is important that pediatricians be able to recognize the signs and symptoms of autism spectrum disorders and have a strategy for assessing them systematically. Pediatricians also must be aware of local resources that can assist in the diagnosis of and the management of ASD.

Pediatrics Vol. 120 No. 5 Nov. 2007

Screening and Surveillance Algorithm

Language Delay:Absolute indications for immediate evaluationAmerican Academy of Child Neurology 2006

Age

12 months No babbling

16 months No single words

24 months No functional 2-word phrases (not echolalic)

Any age Any loss of language or social skills

Illinois Chapter of AAP (ICAAP): Enhancing Developmentally Oriented Primary Care

EDOPC at a GlanceGoals

Improve delivery and financing of preventive health and developmental services for children birth to three

Build on existing programs to develop a range of strategies for primary care settings

EDOPC at a Glance

Collaborative project Advocate Health Care Healthy Steps Program Illinois Chapter, American Academy of

Pediatrics (ICAAP) Illinois Academy of Family Physicians (IAFP)

2005 through 2010 Multiple funders

EDOPC at a Glance:Who Has Been Trained

Professionals Trained by EDOPC by Type

Residents192

Other Pediatric Care Staff

1955

Physician Assistants

24

Nurse Practitioner,

69

Physicans633

EDOPC Tools Training

Academic detailing in the practice for all staff Peer-to-peer faculty

Resource Toolkits

Technical Assistance Monthly conference calls Face to face consulting Phone consultation

EDOPC Web site

ICAAP/TAP Collaboration Primary care physician training on early

identification; especially in rural areas Establishing a network of interdisciplinary

diagnostic teams Establishing autism medical homes for

family partnerships regarding coordination of supports

Transition Funding!!

Autism Advocacy Initiative A network of IL physicians

to represent physicians at the local and state level on issues related to autism

The primary mission is to advocate for evidence based treatments

To reach out and provide support to adult medical providers

Access to Treatment for All Current evidence-based practices for autism: Applied Behavior Analysis (ABA)1, [i], [ii] Discrete Trial Teaching1 Pivotal Response Training1 Learning Experiences: An Alternative Program for Preschoolers

and Parents (LEAP)1 Treatments Considered “Promising Practices”: Picture Exchange Communication System (PECS)Incidental

TeachingStructured Teaching (TEACHH)Augmentative/Alternative CommunicationAssistive TechnologyJoint Action RoutinesCognitive Behavioral ModificationCognitive Learning Strategies Social StoriesSocial Decision-Making StrategiesSensory Integration [i] Rogers, S. J. & Vismara, L. A. (2008). Journal of Clinical Child & Adolescent Behaviors, 37 (1), 8-38.

[ii] New York State Department of Public Health Early Intervention Program (2005). Report of the Recommendations: Autism/Pervasive Developmental Disorders. New York: Department of Public Health.