Increasing Access to Identification and Comprehensive Care for

Children with Autism Spectrum Disorders (ASD) and Other Developmental Disabilities (DD)
ACCESS: Assuring Comprehensive Care through Enhanced Service Systems for Children with ASD and other DDs
Implementing Evidence-based Strategies in Oregon Communities
Robert Nickel, MD, Marilyn Berardinelli, BS, Shelley Barnes, BS, Sheryl Gallarde, MSc, Amy Doss, BA, and Marilyn Hartzell, M.Ed.
Oregon Center for Children & Youth with Special Health Needs at Oregon Health & Science University
Project Summary: Improve the identification and management of children with autism spectrum disorder and other developmental disabilities (ASD/DD) in their local communities.

Current Challenges in Oregon:

Lack of communication and coordination across service systems

PCPs are not prepared to assume care of children with ASD/DD

Total Children Evaluated

51

Number of Children Identified with ASD

37

Number of Children Not Identified with ASD

Separate eligibility determination for education services for ASD. Some children are found

Multnomah

Evaluation Data to Date*

Long wait lists for medical evaluations for ASD/DD

Washington

Clatsop

Oregons autism rate is 11.4% v. 7.9 nationally

ACCESS Project Sites

Columbia

eligible for education services but do not receive an ASD diagnosis after a medical team

Average Age (in months)

evaluation, and vice versa

Number of Disagreements between Medical

and Education Team Members

Tillamook

Yamhill

1. Medical and neurological concerns are assessed through an interdisciplinary

Wasco

Clackamas

To be
developed
Fall, 2015

10

Umatilla

Wallowa
Union

Gilliam

Marion

Polk

Wheeler
Lincoln
Benton

Baker

Jefferson

Linn

Grant

45 months

Crook
Lane

Malheur

Deschutes

4
Douglas
Coos

evaluation.)

*Evaluation data published June 2015

process1.

Sherman
Morrow

(These children were referred for further

Evidence-based Strategies:

Hood
River

Harney

Curry
Josephine

Jackson

Klamath

Lake

2. Practice facilitation for implementation of the medical home strategies2 using Plan-DoStudy-Act (PDSA) cycles takes place in practices.
3. Peer-to-peer support for parents of children with new diagnoses3 happens as part of the
team evaluations.

Project Objective #2: Improve the management of children

with ASD/DD in the medical home

Project Objective #1: Establish timely process in the local community that

Work with pediatric practices in 6 sites on a six-month Quality Improvement

(QI) program

determines both educational eligibility for autism services and medical diagnosis

Support office-based QI teams which include a physician champion and parent

Education and health care providers do usual evaluations

Autism Identification Teams

o

Screening all children in the practice based on AAP guidelines

Conduct family interview based on DSM-5 criteria

Flagging charts of children with established ASD/DD diagnosis

Evaluate child with the STAT (Screening Tool for Autism in Toddlers and Young

Identifying office care coordinator

Children)

Conduct physical exam with focus on minor physical anomalies

Team meets to discuss results, complete DSM-5 checklist and conference with the family

Project staff help ASD teams identify Parent Partners and

QI teams
o

Project staff helps medical home identify Parent Partner and

provide initial training and ongoing support

(practice addresses any issues in screening and identification first)

Health care providers:

in all aspects of the project. Parents are part of:

provides initial and ongoing training

Identify QI goals which include:

o

ASD ID Team & Medical Home

Project Objective #3: Involve parents of children with ASD/DD

PDSA cycles

Partner to work with local educators, including early intervention and autism eligibility staff

ASD ID Team
Medical Home

of a child with ASD/DD to implement a quality improvement process based on

8 communities have worked to identify a pediatrician, mental health provider, and Parent
Local providers form Autism Identification Team

Key

Parent Partner contacts families prior to evaluation, attends the

conference with the family, and calls one month post-evaluation

Identify additional QI goals through completing the Medical Home Index-SRF

Parent Partner provides materials and resources to families

and reviewing Key Components of Medical Home for Children with ASD/DD

Project advisory committee

document.

Internal project planning team

Significance: The Autism Identification Team expands access to comprehensive team evaluations in the familys home community, decreases the time for evaluation and entry into autism services, and decreases cost to health plans for team evaluations.
References
1Filipek,

P., Accardo, P., Ashwal, S., et al. (2000). Practice parameter: screening and diagnosis of autism: report of the quality

standards subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55(4), 468-479.
1Mcclure,

I., Mackay, T., Mamdani, H., & Mccaughey, R. (2010). A comparison of a specialist autism spectrum disorder

assessment team with local assessment teams. Autism, 14(6), 589-603.

2Baskerville,

N. B., Liddy, C., & Hogg, W. (2012). Systematic review and

3Ainbinder,

J. G., Blanchard, L. W., Singer, G. H., Sullivan, M. E., Powers, L. K., Marquis, J. G., &

meta-analysis of practice facilitation within primary care settings. The

Santelli, B. (1998). A qualitative study of parent to parent support for parents of children with

Annals of Family Medicine, 10(1), 63-74.

special needs. Journal of Pediatric Psychology, 23(2), 99-109.

2Nagykaldi,

3Russa,

Z., Mold, J. W., & Aspy, C. B. (2005). Practice facilitators: a

review of the literature. Family Medicine, 37(8), 581.

M. B., Matthews, A. L., & Owen-DeSchryver, J. S. (2014). Expanding supports to improve

the lives of families of children with autism spectrum disorder. The Journal of Positive Behavior
Interventions. 17(2), 95-104.

ACCESS is funded by Health Resources and Services

Administration, #H6MMC26249, State
Implementation Grant for Children/Youth with ASD
and other Developmental Disabilities