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Services & TN ’ s Families of Children with ASD. Bob Hodapp, Maria Mello, Samantha Goldman & Rick Urbano. 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. Project Itself. - PowerPoint PPT Presentation
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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
50
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
51
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
52
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.