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STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH October 9 th , 2015
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STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

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Page 1: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS

Presented by:Lindsay Shea, MS, DrPHPJ Turcotte, MPH

October 9th, 2015

Page 2: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 2

DATA DRIVES PROJECTS: CENSUS, NEEDS ASSESSMENT, FOCUS GROUPS

Census Data

Needs Assessment Data

Focus Group Findings

ASERT Projects

Page 3: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PENNSYLVANIA AUTISM CENSUS PROJECT

2009Pennsylvania

Autism Census Project

2014Pennsylvania

Autism Census Update

“How manyPennsylvanians are living

with autism?”• Where do they live?• How old are they?• Is the number increasing?• Is this group changing over time?

Page 4: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 4

SERVICE SYSTEMS ACCESS BY AGEPre-Elementary:

EI services are available until age 5

Elementary:Special Ed and BHRS services

Middle/High School:Special Ed until age 22 and BHRS

services until age 21

Adults:~500+ slots for the Adult Autism Waiver and Adult

Community Autism Program

Page 5: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 5

PA Autism Census

Department of Human

Services (DHS)

Pennsylvania Department of Education

(PDE)

2009 PENNSYLVANIA AUTISM CENSUS: DATA SOURCES

Page 6: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 6

Office of Developmental

Programs(ODP)

Office of Children,

Youth, and Families (OCYF)

Office of Medical

Assistance Programs (OMAP)

2014 PENNSYLVANIA AUTISM CENSUS:DATA SOURCES

PA Autism Census Update

Office of Vocational

Rehabilitation

Department of Human Services

(DHS)

Pennsylvania Department of

Education (PDE)

Criminal

Justice

Pennsylvania Commission on

Crime and Delinquency-

Juvenile Justice

Intellectual Disability Services

Autism Services

Page 7: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA AUTISM CENSUS: FINDINGS

Page 8: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 8

2009 PENNSYLVANIA AUTISM CENSUS PROJECT

Page 9: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 9

2014 PENNSYLVANIA AUTISM CENSUS PROJECT

Page 10: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 10

DISTRIBUTION OF ASD IN PA

Page 11: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 11

BUT WE ARE STILL UNDERCOUNTING…

55,830

188,000 Who We FoundReceiving Public Services with ASD diagnosisi.e. School supports or Medicaid

Where is everyone else?• Private Insurance• Undiagnosed• Do not meet program eligibility because of

functional skill/IQ requirements• Not receiving services

127,000

Purple=Autism Census FindingRed=Assuming 1% ASD PrevalenceGray= Assuming 1.47% Prevalence

Page 12: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 12

GROWTH OF AGES OF AUTISM POPULATION: PENNSYLVANIA

13%

56%

20%

4%7%8%

49%

25%

7%11%

4%

26% 25%

13%

32%

0%

10%

20%

30%

40%

50%

60%

0-4 Years 5-12 Years 13-17 Years 18-20 Years 21+ Years

Proportion of ASD by Age Group

2005 2011 2020

• The population overall is growing each age group

• The proportions are shifting over time

• By 2020, the adult population will be the largest proportion as compared to the other age groups

What does this mean?

Page 13: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 13

RACE/ETHNICITY OF INDIVIDUALS WITH AUTISM

Black/AA13%

Hispanic7%

Other4%

Asian2%

White74% White, 77.9

Black/AA, 11.6

Asian, 3.3

Other, 0.6 Hispanic, 6.6

Page 14: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 14

2014 PA AUTISM CENSUS: SERVICE SYSTEM PREVALENCE

PA Department of Education (PDE)

38,974

Department of Human Services (DHS)

35,713

Office of Children, Youth and Family (OCYF)

1,933

Justice System≈ 500

Office of Vocational Rehabilitation (OVR)

1,705

Page 15: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA AUTISM CENSUS: JUSTICE SYSTEM

Page 16: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 16

JUVENILE JUSTICE CHARGES: PENNSYLVANIA

Simple Assault-Bodily InjuryHarassment-Strike, Shove, KickDisorderly Conduct-Engage in FightingSimple AssaultCrime of Violence-Intent to Terrorize

Top 5 Charges

10 11 12 13 14 15 16 17 18 19 20 21

PA

Ages with Highest Number of Charges

Page 17: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

JUVENILE JUSTICE BY CHARGE FREQUENCY

0

50

100

150

200

250

300

10 11 12 13 14 15 16 17 18 19 20 21

Num

ber o

f Cha

rges

AgePerson Property Other

*Numbers reflect the number of pre-adjudicated charges, not the number of individuals. Multiple charges could be committed by a single offender. These trends are being investigated further to gain a clearer understanding

of these relationships.

Page 18: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA AUTISM CENSUS: OFFICE OF CHILDREN, YOUTH, AND FAMILIES

Page 19: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 19

OCYF: RACE/ETHNICITY AND GENDER

43%

1%

50%

6%

Black/African American Hispanic Asian White Other/Missing

26%

1%

70%

3%

Black/African American Hispanic Asian White Other/Missing

Non-ASD Population ASD Population

54% Male 74% Male

Page 20: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 20

OCYF: DISABILITY STATUS

PROPORTION WITH ANY DISABILITY

18.1

52.1

29.9

50.1

36.4

13.5

0

10

20

30

40

50

60

Disability Present No Disability Not Yet Determined

Perc

ent

Non-ASD

ASD

Page 21: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA AUTISM CENSUS: OFFICE OF VOCATIONAL REHABILITATION

Page 22: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 22

OFFICE OF VOCATIONAL REHABILITATION

~20.3% increase in 1 year

2012: 2,051

people served

2011: 1,705

people served

Mean age served = 22 years old

Served= Number of Individuals with ASD served statewide in the

Office of Vocational Rehabilitation

Page 23: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 23

OVR: PLAN STATUS

1705

131 15662 46

0

200

400

600

800

1000

1200

1400

1600

1800

Number served Closed employed Closed after plan foremployment was

initiated

Closed before planwas initiated

Closed atApplication

Number Served and Plan Status

Page 24: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 24

OVR: JOB PLACEMENT

28.2%

3.1%

10.7%

23.7%

22.9%

11.5%

Occupations of Individuals with Autism Receiving Services from the Office of Vocational Rehabilitation

Training/Education, Management orSales

Computer, Math or Science

Health or Personal Care

Food Prep/Service

Construction, Maintenance orProduction

Transportation/Logistics

Page 25: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA AUTISM NEEDS ASSESSMENT

Page 26: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 26

NEEDS ASSESSMENT FINDINGSExpert from the Summary Report

Service Needs

Barriers toServiceAccess

Unwanted Outcomes

Employment

Getting a Diagnosis

Family Impact

Page 27: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

WRAP-UP

Page 28: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PAautism.org/censusPAautism.org/needsassessment

Page 29: STATE OF THE STATE PENNSYLVANIA AUTISM CENSUS · STATE OF THE STATE: PENNSYLVANIA AUTISM CENSUS. Presented by: Lindsay Shea, MS, DrPH PJ Turcotte, MPH. October 9. th, 2015

PA Autism Census| 29

ASERT is funded by the Bureau of Autism Services, PA Department of Human Services

Website: www.PAautism.orgEmail: [email protected]

[email protected]