1

Services & TN’s Families of Children with ASD

Bob Hodapp, Maria Mello, Samantha Goldman & Rick Urbano

2

Today’s Talk =

• Introduction & Methods (short)• Results

– Overall– By age– By rural vs. non-rural– By grand region of state

• Discussion– What we found & what we recommend

3

Project Itself

• Tennessee’s ACT Early Team– to “…improve access to comprehensive,

coordinated health care and related services” for children-youth with disorder (ASD).

– Part of job to perform “resource mapping”– Decided (in 12-11) to perform web-based

statewide survey

4

Timeline of Survey

• Meetings to:– Decide on performing survey (12-11 & 1-12)– Agree on survey questions (2-12)

• IRB approval (late March, 2012)• Uploading survey into RedCap & Testing

survey (Rick, Maria)• Translation into Spanish (Maria & Pathfinder)• Making flyers (English-Spanish--Kylie)

5

Timeline--Recruitment

• Six community conversations re: service needs promoted survey

• Cory Bradfield—coordinator, & John Shouse—facilitator/MC

• Maria’s e-mails-calls (5-12 to 11-12) to…• 538 agencies-organizations

– East = 188; West = 137; Middle = 197• Appearance on Nashville Spanish-language radio

—July, 2012

6

Final Flyer

Participants per Week

7

8

Current

9

Current Status

• N = 421 (with complete data)• 65 of state’s 95 counties

• East: 23.0%; 24 of 34 counties• Middle: 62.1%; 26 of 40 counties• West: 14.9%; 15 of 21 counties

10

Participant Characteristics

• Mothers 84.5%; Fathers 9.7%; Other 4.8%• White = 83.6%; Af-Am = 8.6% (36); Hispanic =

5.9% (25)• Ed levels:

• Less than HS or HS grad = 14.7%• Some college = 27.3%• BA/BS = 29.9%• Professional degree = 28.2%

11

Results: Organization

• Major Categories:– I-Overall (for entire sample)– II-Age-Groups (0-4; 5-13; 14 & up)– III-Rural vs. Non-Rural & TN Grand Division

• Within Each Category– (a) Co-occurring Problems– (b) Diagnostic Issues– (c) Services received, needed, coordinated

(a) Co-Occurring Conditions:% w/ Moderate-Severe Behavior Issues

Series120

25

30

35

40

45

50

55

60

65 Social Interaction

Attention Span

Sensory Issues

Eating Habits

Language Use and Understanding

Compulsive Behavior

Hyperactivity

Mood Swings

Sleep Disturbance

(a) Co-Occurring Conditions

Series120.0%

25.0%

30.0%

35.0%

40.0%

45.0%

50.0%

55.0%

60.0%

AllergiesDevelopmental DelayAnxity/ DepressionADHDSpeech/Oral Motor Prob-lemsLearning Disability

(b) Diagnostic Issues

Age of fi

rst co

ncerns

Age of fi

rst disc

ussing c

oncern

Age of d

iagnosis

0%20%40%60%80%

100%

>60 months48-60 months30-48 months24-30 months18-24 months12-18 months<12 months

(b) Diagnosis: Type of Concern

Series10

10

20

30

40

50

60

70

Delays in speechSocial differencesUnusual behaviorsLimited playMotor delaysBehavior problemsProfessional concern

(b) Diagnosis: # of Pros Consulted

Series10

5

10

15

20

25

30

35

OneTwoThreeFourFive or more

(c) Frequently Received Services

Series10

10

20

30

40

50

60

Special EdSpeechPT/OTHealthBehaviorCounseling/PsychRespite1:1 Aide

(c) Least Frequently Received Services

Series10

10

20

30

40

50

60

Self-CareCoordinationHearing/visionTransportation/MobilityAssistive TechTransition

(c) Recommended Services

Series10

10

20

30

40

50

60

70

80

90

IEPSpeechStructured PreschoolBehavior SupportsIFSPABA

Series10

10

20

30

40

50

60

70

80

90

OT

Behavior Supports

ABA

School Home

(c) Services NOT Implemented

Series10

10

20

30

40

50

60

ABABehavior SupportsIFSPStructured PreschoolIEPSpeech

Series10

10

20

30

40

50

60

ABABehavior SupportsOT

School Home

(c) Recommended Medical Services

Series105

101520253035404550

Medication EvaluationNeuro EvalGenetic TestingSleep EvaluationDAN Doctor

(c) Medical Services NOT Implemented

Series10

5

10

15

20

25

30

DAN DoctorSleep EvalGenetic TestingNeuro EvalMedication Eval

(c) Recommended Parent Services

Series10

10

20

30

40

50

60

Support GroupIndependent ReadingParent WorkshopsContact Other Parents

(c) Parent Services NOT Implemented

Series10

5

10

15

20

25

30

35

40

45

Support GroupParent WorkshopContact Other ParentsIndependent Reading

( c) Recommended Service “Not Available in Area”

Series105

101520253035404550

DAN DoctorParent WorkshopsHome Behavior SupportsParent Support GroupContact Other Parents

(c) Recommended Service “Not offered by school”

Category 10

10

20

30

40

50

60

70

School ABAIFSPSchool Behavior SupportsSchool SpeechHome ABA

(c) Service Coordination

Know About Each

Other

Know Each Other

Talk to Each

Other

Coordinate Servi

ces05

1015202530354045

Fairly/Very Well or Often/Always

Not at all

RESULTS BY AGE GROUP

(a) Co-occurring Issues

Speech

Epilepsy

Vision

Mental Healt

h LD ADD

Anxiety/

Depression

05

101520253035404550

0-4 years5-13 years14 and up

(b) Age of Diagnosis

6-13 years 14 + years0%

10%20%30%40%50%60%70%80%90%

100%

>60 months48-60 months30-48 months24-30 months18-24 months12-18 months<12 months

(c) Services Received

Speech

PT/OT

Specia

l Ed

Behavior S

upport

Health

Respite

1:1 Aide

Transiti

on

Counseling/P

sych

0102030405060708090

0-4 years5-13 years14+ years

(c) Recommended Services

IFSP

ABA

Behavior S

upports0

102030405060708090

School

Speech OT ABA0

10

20

30

40

50

60

70

80

90

0-4 years5-13 years14+ years

Home

(c) Services NOT Implemented

ABA Behavior Supports

IFSP0

10

20

30

40

50

60

70

ABA Speech OT0

10

20

30

40

50

60

70

0-4 years5-13 years14 + years

School Home

(c) Recommended Medical Services

Neuro Eval Medication Evaluation

Genetic Testing

Sleep Evaluation

DAN Doctor0

10

20

30

40

50

60

70

0-4 years5-13 years14+ years

(c) Services NOT Implemented

Sleep Eva

l

DAN Doctor

Genetic Testi

ng

Medication Eva

luation

010203040506070

0-4 years5-13 years14+ years

(c) Parent Services

Support Groups

Workshops0

10

20

30

40

50

60

70Recommended

Support Groups

Workshops0

10

20

30

40

50

60

70

0-4 years5-13 years14 + years

NOT Implemented

RESULTS BY RURAL/NON-RURAL

(a) Co-occurring Issues

Developmental

Delay

Learn

ing Disa

bility

Speech

/Oral

Motor

Compulsive Behav

iors

Mood Swings

0

10

20

30

40

50

60

RuralNon-rural

(b) Diagnosis- Age of 1st Discussing Concern with a Professional

Rural Non-rural0%

10%20%30%40%50%60%70%80%90%

100%

>60 months48-60 months30-48 months24-30 months18-24 months12-18 months<12 months

(b) Age of Diagnosis

Rural Non-rural0%

10%20%30%40%50%60%70%80%90%

100%

>60 months48-60 months30-48 months24-30 months18-24 months12-18 months<12 months

(c) Services NOT Implemented

School B

ehavior S

upports

Private

Behavior S

upport

Private

Speech

Genetic Testi

ng

Sleep Eva

l

DAN Doctor

Parent S

upport Group

Parent W

orkshop

Contact O

ther Pare

nts0

10

20

30

40

50

60

RuralNon-rural

RESULTS BY REGION

(c) Services NOT Implemented

School B

ehavior S

upports

Private

ABA

Private

OT

Private

Speech

Sleep Eva

l

DAN Doctor

Parent S

upport Group

Independent Read

ing

Parent W

orkshops

Contact O

ther Pare

nts0

10203040506070

WestMiddleEast

Five Recommendations

• Acknowledgment that many are possible• But five seem most justifiable from these

findings

Recommendation #1

• Increase Professional Training• Why?

– Lag between parent concern-consultations and ultimate ASD diagnosis

– Going to too many professionals before diagnosis• What exactly?

– Screening (like MD-STAT), for many disciplines– Better referral information (WHO gets called?)

Recommendation #2

• Increase-Target Services for Older Children• Why?

– Many problems increase (mainly anxiety-depression, ADD, other MH concerns)

– Many children with these problems not receiving counseling/MH care

• What exactly?– Identification of MH professionals who serve (are

good at serving?) children-adolescents w/ASD

Recommendation #3

• Increase Specific Types of Services• Why?

– Although all services should to be increased, several seemed especially problematic

• What exactly?– ABA-behavioral supports (school & community)– Parent-related supports (P groups, workshops)– Specific health (DAN doctors, genetic & sleep

evaluations)

Recommendation #4

• Increase Attention to Rural Areas• Why?

– Rural > Non-rural for• Some co-occurring conditions • Higher percentages who cannot access ABA, parent,

and special medical services

• What exactly?– Given relatively short distances (& good highway

system), is issue more one of knowledge-referrals?

Recommendation #5

• Increase Coordination of Services• Why?

– For sample overall:• 90% want service coordination; 6% get it• Only 1/3 of providers even know of others; only 13-15%

often talk with or plan/coordinate services

• What exactly?– Need to develop mechanism to make planning-

coordinating common (& compensated) part of service practice

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Special thank you’s to…• TN Disability Coalition & Community Partners

– Cory Bradfield– Carol Westlake– John Shouse

• Vanderbilt Kennedy Center– Terri Urbano– Jan Rosemergy– Lynnette Henderson– Kylie Beck– Courtney Taylor

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And to…• VKC-TRIAD

– Zack Warren, – Pablo Juarez

• TN Disability Pathfinder (Multi-cultural Outreach Program)– Cecilia Melo-Romie– Carolina Meyerson– Alexander Santana, & – Carole Moore-Slater

• TN Council on Developmental Disabilities

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And to…• Tennessee Disability Partners & Affiliated

Organizations– UT Boling– DLAC– The 538 different organizations and individuals who helped promote

this survey

• All of our respondents

– Thank you.