Services & TN’s Families of Children with ASD Bob Hodapp, Maria Mello, Samantha Goldman & Rick Urbano

Today’s Talk = Introduction & Methods (short) Results Discussion Overall By age By rural vs. non-rural By grand region of state Discussion What we found & what we recommend

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

Timeline of Survey Meetings to: IRB approval (late March, 2012) 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)

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

Final Flyer

Participants per Week

Current

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

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%

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

(a) Co-Occurring Conditions

(b) Diagnostic Issues

(b) Diagnosis: Type of Concern

(b) Diagnosis: # of Pros Consulted

(c) Frequently Received Services

(c) Least Frequently Received Services

(c) Recommended Services Home School

(c) Services NOT Implemented School Home

(c) Recommended Medical Services

(c) Medical Services NOT Implemented

(c) Recommended Parent Services

(c) Parent Services NOT Implemented

( c) Recommended Service “Not Available in Area”

(c) Recommended Service “Not offered by school”

(c) Service Coordination

Results by age group

(a) Co-occurring Issues

(b) Age of Diagnosis

(c) Services Received

(c) Recommended Services School Home

(c) Services NOT Implemented School Home

(c) Recommended Medical Services

(c) Services NOT Implemented

(c) Parent Services Recommended NOT Implemented

Results by rural/non-rural

(a) Co-occurring Issues

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

(b) Age of Diagnosis

(c) Services NOT Implemented

Results by region

(c) Services NOT Implemented

Five Recommendations Acknowledgment that many are possible But five seem most justifiable from these findings

Recommendation #1 Increase Professional Training Why? What exactly? 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? What exactly? 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? What exactly? 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

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

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

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.