Disparities in Services between Latino and Non-Latino White Children with ASD and Next StepsChildren with ASD and Next Steps

Sandy Magaña, PhD, Rebecca Paradiso, MSW, Arellys Aguinaga BAUniversity of Wisconsin-Madison

Research on disparities

Disparities in diagnosis of autism among Disparities in diagnosis of autism among Latinos are well established

Discrepancies in classification have been Discrepancies in classification have been found among Latino children Assessments often do not take into account Assessments often do not take into account

language barriers and assessment tools not validated for Spanish speaking populations

Research continued

Early intervention programs in states withEarly intervention programs in states with higher African American and Latino children are less able to meet increased demand of

i hild i h iserving children with autism Age of diagnosis: Latinos and African

A i l t th L ti hitAmericans later than non-Latino whites Latinos and African American children with

ASDs have lower access to health care thanASDs have lower access to health care than non-Latino whites

Research questions

Do Latino and White children differ in age of diagnosis? ever receiving key public services (birth to three, preschool

services k-12 special education)?services, k 12 special education)? the total number of services received and number of unmet

services at time of interview?

D t l d ti l l d b f f Do maternal education level and number of sources of knowledge about autism mediate the relationship between race/ethnicity and services?

What are barriers to receiving services for Latino children?

Study

Surveys: 105 totalSurveys: 105 total 46 Latina mothers Data collected as part of larger study with in-home p g y

interviews Recruited through service providers and support

groupsgroups 59 non-Latino White mothers Mail survey on service questions Mail survey on service questions Recruited through services providers and

organizations

Demographics

Characteristic Non-Latino LatinoWhite

Mom’s age 44.5 38.6*

HS or less 5.4 54.3***Some collegeCollege grad +

19.675

23.919.6

Mom employed 66.1 48.9

Married or living 92 9 68 1**Married or living w/ part.

92.9 68.1**

Demographics

Ch t i ti N L ti L tiCharacteristic Non-Latino White

Latino

Annual incomeAnnual income0-$29,00030 000-49 000

5.510 9

56.5***23 930,000-49,000

$50,000+10.983.6

23.919.6

Child Age 9 8 9 4Child Age 9.8 9.4

# of child 4.80 3.79*behavior probs

Age of diagnosis

4

3

3.5

4

2

2.5

Latino

1

1.5 White

0

0.5

Age first noticed age told MD Age of DXg g g

Age of diagnosis by age group

6

5

6

3

4

Latino

1

2White

0

1

0 to 5 6 to 11 12 and upp

When concerns brought to MD

35

40

45

20

25

30

35

white

5

10

15

20 white

Latino

0

5

said child growout

said too early dev. Normalout

When concerns brought to MD

40

30

35

40

15

20

25

white

5

10

15 latino

0ordered test referred to spec overall active

responsep

What did diagnosing professional do after giving diagnosis of ASD

PercentPercentGave info on available services 58Gave literature on autism 41Gave literature on autism 41Spent time talking about autism 41Referred to autism specialist 24Referred to autism specialist 24Referred to support group 21P id d dditi l i f 12Provided no additional info 12

Families learned about autism from

fri nd

books & Mags

fam mbr

friends

internet

other parents

books & Mags

white

Latino

sup grp

ed profes.

0 20 40 60 80 100 120

HC profes.

Key public services in Wisconsin: Ever received

90

70

80

90

40

50

60

White

10

20

30 Latino

0

10

Birth to 3 Early child Special Ed autismwaiver

Services received at time of interview

ti l

physicaltherapy

occupationaltherapy

White

Latino

i l k

speech therapy

0 50 100 150 200

social worker

Services currently received

respite

intensive autism therapy

psychological services

p

White

Latino

recreational programs

0 50 100 150 200

medical assistance

Services and sources of knowledge

Barriers for Latino children for intensive autism therapy (waiver)

didn't know avail

service not app

wait list

child will not accept

other

not eligible

Barriers for Latino children for Respite

didn't know avail

service not app

wait list

child will not accept

not avail

other

too expensive

inconvenient

Barriers for Latino children for psychological services

didn't know avail

service not app

no insurance

not satisfied

no spanish spk

other

Barriers for Latino children for recreation services

didn't know avail

service not app

too expensivetoo expensive

child will not accept

other

Pathway to services

EarlyDiagnosis

County DDServices

Waiver ProgramIntensive autism

therapy

right away

Birth to Three

therapy

Waiting list forWaiting list forCounty services

Late diagnosis

What do we do now?

Clearly must get needed information aboutClearly must get needed information about services to Latino families

Agencies need to reach out to populations g p pthat lack access to knowledge, information, networks, etc.

Information must be presented in a culturally and linguistically appropriate manner

New pilot intervention study in progress

Entendiendo el Autismo Puedo Entender Entendiendo el Autismo, Puedo Entender Mejor a mi Hijo (By Understanding Autism, I Can Better Understand My Child).y ) Funded by UW Madison’s Institute on Clinical and

Translational Research (ICTR) Community Partner: Wisconsin Family Assistance

Center for Education Training and Support (WI FACETS)FACETS)

By Understanding Autism, I B tt U d t d M ChildI can Better Understand My Child

Advisory committee

Latino parents of children with autism; localLatino parents of children with autism; local social service and medical professionals who work with Latino families; autism d E il Il d h deducator Emily Iland; research and

FACETS staffM t l ti t i d i Met several times to review and give feedback on program content

Will continue to meet throughout course of Will continue to meet throughout course of project

d dAdvisory Board

Promotoras de salud

Program delivered by Promotoras de SaludProgram delivered by Promotoras de Salud (i.e. community health workers (CHWs)) Definition: A lay health educator, or peer leader,

indigenous to the target community who receives training to provide health education

Unique approach Unique approach Hired 3 mothers of children with autism Received intensive training in Spanish to review Received intensive training in Spanish to review

program content Conduct home visits with participants

P d S l dPromotoras de Salud

C f C l i fCeremony for Completion of Program Training

Autism education for parents

Program consists of 2 modules; each have 8Program consists of 2 modules; each have 8 weeks of content

1 session administered/week Each session approximately 1 hour long Sessions includes activities, discussions and ,

home work assignments

First module

Focus on child development; understand an Focus on child development; understand an autism diagnosis; learning about available autism resources and services; and ;explaining a child’s behaviors to others.

First module sessions

Session One: Introduction and pre-testp Session Two: Understanding Child Development Session Three: Understanding the Autism Spectrum

and Your Child’s Needsand Your Child s Needs Session Four: How to be an Effective Advocate Session Five: Advocacy in the School System Session Six: Talking About Autism and Building

Social Support Session Seven: Stress and Depression Session Seven: Stress and Depression Session Eight: Looking Ahead and Post-test

Second module

Focus on strategies parents can do to work Focus on strategies parents can do to work with their child on enhancing social and communication skills and reducing problem g pbehaviors

Second module sessions

Session One: Introduction and Pre-test Session Two: Learning About Research-Based

Interventions Session Three: Understanding Behavior Problems Session Three: Understanding Behavior Problems Session Four: Preventing and Reducing Problem

Behaviors Session Five: Communication Session Six: Social Skills Session Seven: Play Skills Session Seven: Play Skills Session Eight: Looking Ahead and Post-test

In conclusion

Clear disparities exist for Latino children comparedClear disparities exist for Latino children compared to non-Latino white children In age of diagnosis How families get information Birth-to-three and intensive therapy Number of services accessed and unmet service needs Number of services accessed and unmet service needs

overall Need more programs to provide information in

culturally competent ways

Acknowledgements

Students: Holly Morton, Maria Hernandez, Martha De Leon,

Arellys Aguinaga, Rebecca Paradiso Funding and Support:

Center on Disparities in Health (CDH), UW-Madison School of Medicine(NIH Center Grant)School of Medicine(NIH Center Grant)

UW System Institute on Race & Ethnicity Hilldale Student Fellowship Programp g UW Institute for Clinical and Translational Research

(ICTR) Waisman Center

References

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Mandell, D., Novak, M., & Zubritzky, C. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116, 1480-1486.

Mandell D Wiggins L Carpenter L Daniels J DiGuiseppi C Durkin M et al Mandell, D., Wiggins, L., Carpenter, L., Daniels, J., DiGuiseppi, C., Durkin, M. et al., (2009). Racial and ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493-498.

Overton, T., Fielding, C., De Alba, R. (2008). Brief report: Exploratory analysis of the ADOS revised algorithm: Specificity and predictive value with Hispanic children referred for autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1166-1169.spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1166 1169.

Reinschmidt, K.., Hunter, J.., Fernández, M.., Lacy-Martínez, C., et al. (2006). Understanding the success of promotoras in increasing chronic disease screening. Journal of Health Care for the Poor and Underserved, 17, 256-264.

Wise M Little A Holliman J Wise P & Wang J (2010) Can state early intervention Wise, M., Little, A., Holliman, J., Wise, P., & Wang, J. (2010). Can state early intervention programs meet the increased demand of children suspected of having autism spectrum disorders? Journal of Developmental and Behavioral Pediatrics, 31, 469-476.