Do children of Somali Descent Have a Higher ASD

Prevalence?

Great Lakes LEND Collaboration September 26, 2013

Project Background and Overview

Background: MDH Investigation Estimated administrative prevalence (AP) (2009)

MPS ECSE administrative data for children ages 3-4 for 2005-6, 2006-7, 2007-8

Birth cohorts using MN birth certificate data

Results: AP Somali > AP non-Somali across most

assumptions, school years, program types Somali: non-Somali AP ratios ranged from 2-7 times

greater for Somali children but differences decreased rapidly over the 3 school years

AP for Asian, Native American children strikingly low

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Background: Ongoing Community Concerns

Strong Somali advocacy Concerns regarding numbers & severity

Educators: Early intervention, K-12 Professional advocates: PACER, Arc Clinicians

Compelling advocacy at IACC

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Project Overview

Overall Project Objectives Estimate ASD population prevalence for children ages

7 through 9 years with at least 1 parent a resident of Minneapolis in 2010

Compare ASD prevalence by subgroup to assess differences in population prevalence

Engage the Community Conduct Case Verification

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Project Funding Jointly funded

CDC NIH AS

Cooperative agreement managed through AUCD

Funding period July 1, 2011 to June 30, 2012 7/1/12 to 6/30/13 extension No cost extension to 10/13

Initial Research Question

“Is there a higher prevalence of autism in Somali versus non-Somali children who live in Minneapolis?”

Evolved Research Questions What was the prevalence of ASD among children aged 7 through 9 years in

2010? Was the prevalence of ASD among Somali children aged 7 through 9 years

significantly different from non-Somali children in 2010? Were children of Somali descent with ASD more likely to be identified at school

data sources than clinic data sources compared with children with ASD who were not of Somali descent?

Were children of Somali descent more likely to have an ASD classification identified in existing health and school records than children who were not of Somali descent?

Were children of Somali descent more likely to be classified with ASD at a later age than children not of Somali descent?

Were children with ASD and of Somali descent more likely to have intellectual disability than children with ASD who were not of Somali descent?

Did children with ASD of Somali descent have the same degree of severity rated by the clinical reviewer as children with ASD who are not of Somali descent?

Did children with ASD of Somali descent have the same distribution of ASD symptoms noted in records as children with ASD who are not of Somali descent?

Research Questions: Simplified version from community report What is ASD prevalence? Where were children identified? At what age were children likely to be classified

with ASD? What other conditions and disabilities did

children with ASD have? What was the degree of severity rated by the

clinical reviewers of the children with ASD? What was the distribution of ASD symptoms

noted in records of children with ASD?

Eligibility Criteria

Population Ages 7 though 9 in 2010 (born between 2001

through 2003) One parent/custodial guardian a resident of

the City of Minneapolis in 2010 Rationale

Base population requirement: 10,000-15,000 children

Age range with age 8 as the midpoint

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CDC ADDM Network Public Health ASD Surveillance Methodology

A retrospective & records-based design: Identify children meeting age & residency criteria from multiple sources Abstract information from records that contain “triggers”

detailed descriptions of behaviors, developmental delays, co-occurring conditions; ASD & other test results; evaluator’s summary diagnosis or opinion

Review records using standardized coding scheme based on DSM-IV-TR to determine a child’s surveillance ASD status

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ADDM Network

Current ADDM Network Sites: Alabama, Arizona, Arkansas, Colorado,

Georgia/CDC, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, Wisconsin

Data Gathering/Reporting Cycle

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Minneapolis Surveillance Data Sources

ADDM 2008 Surveillance Minnesota 2010 Surveillance

4 sites: health

sources

8 sites: education and health

sources Education and health

sources

* ADDM sites with health only access tend to have lower ASD prevalence estimates, suggesting the importance of including school records in ASD surveillance.

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Modified ADDM Methodology Expanded research questions Age cohort 7-9 year olds MNLINK data set

Used for sensitivity analysis Additional QA checks Oversight

Monthly calls with joint funders On site monitoring and review of records and

processes by CDC Weekly calls with Coordinator and CDC

Community engagement expectations

Educational Data sources Public & Charter Schools

Educational Record Abstraction

Catchment: Age: 2001, ‘02,

’03 Geo: Mpls SY: 2010

Identification: IDEA

exceptionality codes

1 District: 58 schools

1702 records

identified

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1356 participating

records 309 non-participan

ts

FNF

Charter School Identification and Abstraction

Reasons to engage charter schools 35 charter schools in Minneapolis; identified 22 serving

children in our age range (grades 1-4) Community concern that many Somali children with

ASD attend charter schools; a criticism of 2009 MDH report

MN high user of charter schools

Data for consideration of charter school inclusion School size Participation in special education Comparability with MPS population

Charter schools included xxx

Clinic Sources

Identification of Clinic Sources

Catchment: 63 sites

Establish selection

criteria and gather data

Prioritized Clinic

Partners

Type of Practice N

Hospital/Multispecialty 9

Pediatric/medical specialty clinics 3

Psychology/mental health specialty 19

Independent Clinicians 32

Total 63

Criteria for inclusion • Serve children residing in

Minneapolis • Contain specialty clinics for

developmental disabilities • Conduct diagnostic evaluations

Clinic Source Record Review, Abstraction, and Case Determination

Data received from clinic sources

Clinic source data matched with educational source data

Clinic records with no educational match

Clinic source record review and abstraction

Clinic records with educational match

Clinic records reviewed, abstracted and compiled with

educational records

Clinician Review

Case status

Abstracted educational records with no clinical match

Findings To Date

No findings to report yet Anticipated mid October

Community Engagement

Context Minnesota’s Somali population is largest in U.S. (source ACS 2011)

32,000 MN 85,700 U.S. OH, WA, CA

Early 1990’s at time of civil war Minneapolis but increasingly smaller

cities/towns Strong settlement, social services,

refugee assistance agencies, job market

Somali mean age 25 yrs compared to general population 37 yrs

Multigenerational households

Stigma of IDD, Autism, Mental Health No words for autism Regarding mental health only “crazy” and “sane”

Somali Families Need Information and Access to Services

Families Want “Cause” Answer

Vaccination as cause MMR vaccination decline in

MN Strong belief and advocacy

Divided community

Families and professionals

Community Liaison and Facilitators Staff and Contractors

Amira Adawe, BS, Community Liaison Anab Gulaid, MPA, Community Facilitator, Abstractor

and Communications Coordinator *Istaahil Maalin, Parent, Community Facilitator *Nasro Mohamed, MSW, Community Facilitator Halima Abdulahi, Parent, Community Facilitator Hodan Hassan, Parent, Community Facilitator

Additional help from 2012/2013 LEND Fellows Ladan Yusef Salma Huessein Jamal Mohammed

* Previous LEND Fellow

Community Advisory Board Role Identify the best communication strategies to

ensure collaboration Somali public television Community center presentations Informational flyers

Assist in planning regular community meetings to ensure consideration of cultural differences essential to the project’s success

Assist the project team in best disseminating findings

Community Advisory Board

Abdirashid Warsame Abdulirahem Adem, Mpls

Public Schools Ann Fox, Mpls Public

Schools Anne Harrington, DHS Farhan Hussein Farhio Khalif, Somali

media Idil Abdull, Parent Isamil Ahmed

Jennifer Daulman Johnson, Arc GTC

Kaltun Dubbe Lada Yusef, Hennepin

County Mariam Egal, Advocate Mohamed Mohamud Osmah Ahmed Osob Mohamed Saeed Fahia, Shelly Brandl, Fraser

Community Engagement Examples Recruited community facilitators Convened Advisory Committee meetings Monthly updates to advisors Held community meetings for providers and parents Met individually with Imams & Somali community leaders Participated in training events for AuSM and Ramsey

County Somali radio and t.v. interviews Somali community event participation Conducted several newspaper/magazine interviews Filmed interview for documentary on ASD in Somali

community Radio interview on NPR - All Things Considered Legislative testimony Faith based inclusion session form LEND Forum

Early Communication Planning Documents

Project Overview (Somali and English) FAQ (Somali and English) Internal talking points for communication/public

relations staff

Coordinated Meetings Across Campus Departments Communications, public relations staff from three

colleges Office of Equity and Diversity Office for Diversity in Graduate Education University of Minnesota President’s Office

U of MN and Minnesota Department of Health

Release Communication Planning Communication tool planning

Review and approvals

Comprehensive communication plan UMN, MDH, CDC, NIH, AS

Focus on two week period Embargo Press release Meetings with partners and advisors Press engagement Community specific engagement

3 month post release outreach Identify/leverage roles

Specific Somali Focused Strategies Somali Media

Somali TV MN Somali Media TV Somali Mai TV KFAI African American

Show Somali Public radio Somalida Maanta BBC Somalia Voice of America Somali Soomalida Maanta Warsan Times

List Servs eDemocaracy Metro Refugee task force

Somali Other Community leader

meetings Somali community

events Friday Mosque event or

Sunday teaching event Internet sites

Mogodishu Times Hiiraan Online Bartamaha African News Journal

Mainstream media contacts Three leaders

Communication Tools

autism@umn.edu http://rtc.umn.edu/autism/ Podcasts

What is Autism or Autism Spectrum Disorders? Parent story Current Treatments

Learn the Signs Act Early Materials Brochure Booklet

One page summary

Community Report Executive Summary Project Overview What scientific methods did we use? What did we find? Community perspective How can information from this

project be used by others? What are some important questions

to answer? What additional information about

autism might be helpful? Where can I get more information? Who helped make this project

possible? References

Challenges 36

Timelines going into project Ripple effect Relationship building

IRB and authorities Sentinel surveillance Birth record linkage UMN, MDE, MDH, each charter school

High profile Advocacy pressure Budget issues

Leverage other sources (e.g. LEND, ICR/income)

Somali photos and video footage for tools Language

e.g. not a “study”

Next Steps Finish analyses Release findings (October 2013) Continued community engagement

Post release activities Implications of findings

Systems needs (e.g. MDE, DHS, MDH) Practice (e.g. assessment, diagnosis) Research (e.g. on-going surveillance, beyond Mpls)

Verification phase roll out All Somali children case confirmed We’d like to

All Somali children probable Sample non-Somali children in both

FOR INFORMATION Amy Hewitt – hewit005@umn.edu, 612-625-1098 Anab Gulaid – gula0021@umn.edu, 612-624-0730 Kristin Hamre - khamre@umn.edu, 612-625-7593 Amira Adawe - amira.adawe@co.ramsey.mn.us, 612-250-4263