implications of the 2008 statewide autism needs assessment presented at the 24 th annual early...

Implications of the Implications of the 2008 Statewide 2008 Statewide Autism Needs Autism Needs AssessmentAssessment

Presented at the 24Presented at the 24thth Annual Early Intervention Annual Early Intervention and Preschool Conference and “Success by 6” and Preschool Conference and “Success by 6”

ConferenceConferenceMobile, Alabama, November 19, 2008Mobile, Alabama, November 19, 2008

Presenters: Presenters: Brian F. Geiger & Marcia R. O’Neal - UAB Brian F. Geiger & Marcia R. O’Neal - UAB

School of Education and Center for Educational School of Education and Center for Educational AccountabilityAccountability

Heather Vader - UCPHeather Vader - UCPJennifer Robertson - Autism Society of AlabamaJennifer Robertson - Autism Society of Alabama

November 19, 2008 2Autism Needs Assessment

OverviewOverview

BackgroundBackground AACG charge, membership, & AACG charge, membership, &

achievementsachievements Objectives and data sources Objectives and data sources Results and use of data Results and use of data Alabama Autism Task Force updateAlabama Autism Task Force update


BackgroundBackground

Autism Spectrum Disorders definedAutism Spectrum Disorders defined Need for ActionNeed for Action Alabama Autism Task Force formedAlabama Autism Task Force formed

3 Goals3 Goals Needs AssessmentNeeds Assessment

Funded by ACDDFunded by ACDD Conducted AACGConducted AACG


AACG AACG Charge, Membership, Charge, Membership,

AchievementsAchievements ChargeCharge

Provide assessment of needs and resourcesProvide assessment of needs and resources AACG CompositionAACG Composition

Multiple institutions/organizations, 17 Multiple institutions/organizations, 17 individualsindividuals

Guided by Needs Assessment Committee (NAC)Guided by Needs Assessment Committee (NAC) AACG AchievementsAACG Achievements

Complete statewide needs assessmentComplete statewide needs assessment Report findings & recommendations to Task Report findings & recommendations to Task

Force Force


Objectives of AACGObjectives of AACG AssessAssess

needs and resources for children and adults with needs and resources for children and adults with ASDASD

DetermineDetermine

gaps in information, resources, and services gaps in information, resources, and services

PrioritizePrioritizeneeds and gaps in information, services, and needs and gaps in information, services, and

resources resources

Present Present findings and recommendations to the Task Forcefindings and recommendations to the Task Force


Data SourcesData Sources

Professional Literature Professional Literature Community ForumsCommunity Forums Survey on Autism Spectrum Survey on Autism Spectrum

DisordersDisorders Provider SurveysProvider Surveys Key Informant InterviewsKey Informant Interviews Focus GroupsFocus Groups


Diagnosis

Early Intervention

School-based Services

Adult Services

Family Support

Medical Services


Literature ReviewLiterature Review Screening and DiagnosisScreening and Diagnosis

Early ScreeningEarly Screening Diagnostic EvaluationsDiagnostic Evaluations

Intervention/TreatmentIntervention/Treatment Early ChildhoodEarly Childhood School-agedSchool-aged AdultAdult Health Care/MedicalHealth Care/Medical

Family SupportFamily Support Statewide Systems of CareStatewide Systems of Care


Community ForumsCommunity Forums

8 Locations (416 participants)8 Locations (416 participants) Question Categories Question Categories

DiagnosisDiagnosis Early InterventionEarly Intervention School-based ServicesSchool-based Services Adult ServicesAdult Services Medical ServicesMedical Services Family SupportFamily Support


Survey on Autism Spectrum Survey on Autism Spectrum DisordersDisorders

Written and onlineWritten and online 270 completed270 completed

by families, caregivers, & self-advocatesby families, caregivers, & self-advocates during forums, in clinical settings, & onlineduring forums, in clinical settings, & online

TopicsTopics BackgroundBackground DiagnosisDiagnosis Services (EI, Pre-school, Public School, Services (EI, Pre-school, Public School,

Adult)Adult) Health Care / MedicalHealth Care / Medical


Provider SurveysProvider SurveysKey Informant InterviewsKey Informant Interviews

Provider SurveysProvider Surveys (171) – fall 2007 (171) – fall 2007 2323rdrd EI Conference, Birmingham & online EI Conference, Birmingham & online

Key Informant InterviewsKey Informant Interviews (18) – (18) – spring 2008spring 2008 Conducted by AACG membersConducted by AACG members

9 questions9 questions


Provider & Key Informant Provider & Key Informant QuestionsQuestions

Role/relationship with individuals w/ASD Role/relationship with individuals w/ASD Definition of ASDDefinition of ASD 3 strengths/resources3 strengths/resources 3 weaknesses or needs 3 weaknesses or needs Info currently available Info currently available Info needed to identify/meet needsInfo needed to identify/meet needs Best way to gather information Best way to gather information Groups/individuals who should assess Groups/individuals who should assess

needs needs Other comments/issuesOther comments/issues


Provider/Key Informant Provider/Key Informant Response CategoriesResponse Categories

Definitions & CharacteristicsDefinitions & Characteristics Strengths & Weaknesses of ServicesStrengths & Weaknesses of Services Info Currently AvailableInfo Currently Available Info Needed to Identify/Meet NeedsInfo Needed to Identify/Meet Needs Method for Gathering InfoMethod for Gathering Info Other CommentsOther Comments


Focus GroupsFocus Groups

Agency reps, consumers, service Agency reps, consumers, service providersproviders

Four groups – each with one focusFour groups – each with one focus

Conducted by AACG membersConducted by AACG members

9 questions9 questions


Final Report CategoriesFinal Report Categories

Early Screening/DiagnosisEarly Screening/Diagnosis Interventions (Birth-5, School-Interventions (Birth-5, School-

aged, Adult)aged, Adult) Medical ServicesMedical Services Family SupportFamily Support Systems of CareSystems of Care


Early Screening/DiagnosisEarly Screening/Diagnosis-Selected Results--Selected Results-

Age at Diagnosis

0

20

40

60

80

1 2 3 4 5 6 7 8 9 10 11 12 13-18 >18

Years of Age

Nu

mb

er

Dia

gn

osed


Early Screening/DiagnosisEarly Screening/Diagnosis-Results--Results-

NationallyNationally Parental concerns: 1Parental concerns: 1stst 18 months 18 months Average age at diagnosis: 3 yearsAverage age at diagnosis: 3 years

AlabamaAlabama Average time concern to diagnosis: 3 yearsAverage time concern to diagnosis: 3 years Average age at diagnosis: 6 yearsAverage age at diagnosis: 6 years

FewFew trained diagnosticians & trained diagnosticians & providers providers

25% received diagnosis 25% received diagnosis outside of outside of AlabamaAlabama

jennifer muller

Please check this stat. We thought it was 4.5 years.


Early Screening/DiagnosisEarly Screening/Diagnosis-Priority Needs--Priority Needs-

Practice guidelines exist for Practice guidelines exist for screening/diagnosisscreening/diagnosis

SOSO More provider training is needed More provider training is needed

Early screening for should occurEarly screening for should occur

More ASD-specific diagnosticians & More ASD-specific diagnosticians & providersproviders


Early Screening/DiagnosisEarly Screening/Diagnosis-Recommendations--Recommendations-

Implement a statewide screening Implement a statewide screening programprogram

Create educational materials Create educational materials

Develop a regional system of Develop a regional system of clinicsclinics


Interventions for Birth-FiveInterventions for Birth-Five-Results--Results-

Birth to Five Intervention Services NRCC Recommendations vs AACG Survey

4

29

100 100

0

20

40

60

80

100

120

Birth-3 Years 3-5 Years

Age Group

Med

ian

Ho

urs

per

Mo

nth

NRCC

Survey


Interventions for Birth-FiveInterventions for Birth-Five-Priority Needs--Priority Needs-

Increase intervention hoursIncrease intervention hours

ASD training for parentsASD training for parents

Increase number of providersIncrease number of providers

ASD training for providersASD training for providers


Interventions for School-Aged Interventions for School-Aged ChildrenChildren

-Selected Results--Selected Results-Ratings of School Response to Needs

0

5

10

15

20

25

30

35

40

Very Effective SomewhatEffective

SomewhatIneffective

Very Ineffective

Rating

Per

cen

tag

e o

f R

esp

on

den

ts

Academic

Behavioral

Communication

Social


Interventions for School-Aged Interventions for School-Aged ChildrenChildren

-Priority Needs--Priority Needs- Broaden access to servicesBroaden access to services ASD training for school personnelASD training for school personnel

Understanding and awareness Understanding and awareness Evidence-based interventionsEvidence-based interventions

Parent educationParent education Increase support for children with Increase support for children with

ASDASD Greater intensity of servicesGreater intensity of services Transition supportTransition support


Adult ServicesAdult Services-Results--Results-

50% lack appropriate communication 50% lack appropriate communication skillsskills

Many have difficulties with daily living Many have difficulties with daily living skillsskills

Over half need supervisionOver half need supervision

Over half do not have support networksOver half do not have support networks

Small percentages receive servicesSmall percentages receive services


Adult ServicesAdult Services-Priority Needs--Priority Needs-

Education and trainingEducation and training Access to servicesAccess to services Increase transition and future Increase transition and future

planningplanning More ASD-specific specialistsMore ASD-specific specialists Tailored interventionsTailored interventions Support groupsSupport groups


Interventions Across the Interventions Across the LifespanLifespan

Need individually-tailored interventions Need individually-tailored interventions Key elements for effective interventionKey elements for effective intervention

Intensive (min. of 25 hours/wk)Intensive (min. of 25 hours/wk) Targeted toward specific goals/core symptoms of Targeted toward specific goals/core symptoms of

ASDASD Developmentally-appropriateDevelopmentally-appropriate Specific training for providers and parentsSpecific training for providers and parents

Interventions with best research-based Interventions with best research-based evidenceevidence Applied behavior analysis (ABA)Applied behavior analysis (ABA) Developmentally-based socialization techniquesDevelopmentally-based socialization techniques Structured teaching and visual supportsStructured teaching and visual supports Peer and community education and awarenessPeer and community education and awareness


InterventionsInterventions-Recommendations--Recommendations-

Early Childhood and School-agedEarly Childhood and School-aged Increase number of intervention hoursIncrease number of intervention hours Include key elements of interventionInclude key elements of intervention Education/training for educators, families, Education/training for educators, families,

therapiststherapists Provide technical assistance/support to schoolsProvide technical assistance/support to schools Train more ASD professionalsTrain more ASD professionals


InterventionsInterventions-Recommendations--Recommendations-

AdultAdult Coordinate intervention and Coordinate intervention and

supportsupport Implement collaborative Implement collaborative

approachapproach Fund insurance waiverFund insurance waiver Training to provide adult Training to provide adult

support servicessupport services


Medical ServicesMedical Services-Results--Results-

Few medical professionals trained in ASDFew medical professionals trained in ASD

Routine medical/dental care problematicRoutine medical/dental care problematic

Lack of research for some treatmentsLack of research for some treatments

Proliferation of alternative medicine Proliferation of alternative medicine treatmentstreatments

Most had public or private insuranceMost had public or private insurance


Medical ServicesMedical Services-Priority Needs--Priority Needs-

More training for primary care providers More training for primary care providers

Training for a broad range of service Training for a broad range of service providersproviders

Increase coverage from state and insurersIncrease coverage from state and insurers

Provide medically-oriented, rather than Provide medically-oriented, rather than mental health coverage mental health coverage


Medical Services/Health Medical Services/Health CareCare

-Recommendations--Recommendations- Train physiciansTrain physicians Educate parentsEducate parents Support researchSupport research Allocate state resourcesAllocate state resources Increase provider reimbursementIncrease provider reimbursement Work with providers to expand Work with providers to expand

insurance coverageinsurance coverage


Family SupportFamily Support-Results--Results-

Families desire more Families desire more trainingtraining

Families are under Families are under extreme stressextreme stress

Case management not Case management not widely availablewidely available


Family SupportFamily Support-Priority Needs--Priority Needs-

Strengthen local support networksStrengthen local support networks

Increase respite care provided by Increase respite care provided by those with ASD-trainingthose with ASD-training

Increase community programming Increase community programming

Increase transportation servicesIncrease transportation services


Family SupportFamily Support-Recommendations--Recommendations-

Increase respite care, summer camps, Increase respite care, summer camps, recreationrecreation

Increase availability of case Increase availability of case management servicesmanagement services

Provide information about support Provide information about support networks and recommended therapiesnetworks and recommended therapies

Obtain funding to widely distribute Obtain funding to widely distribute results of needs assessmentresults of needs assessment


Systems of CareSystems of Care-Results--Results-

States develop regional centersStates develop regional centers

Need to coordinate care across Need to coordinate care across agenciesagencies


Systems of CareSystems of Care-Priority Needs--Priority Needs-

Develop regional diagnostic Develop regional diagnostic servicesservices

Provide regional training Provide regional training services services

Offer ongoing consultation to Offer ongoing consultation to schools schools

Model intervention programsModel intervention programs


Systems of CareSystems of Care-Summary--Summary-

Significant weaknesses exist in the services Significant weaknesses exist in the services delivered delivered

Other states have effective programsOther states have effective programs Diagnostic servicesDiagnostic services Professional training servicesProfessional training services On-going consultation and technical assistance to On-going consultation and technical assistance to

schoolsschools Model programs using scientifically-based practicesModel programs using scientifically-based practices

These programs provideThese programs provide Certification programs for professionals specializing in Certification programs for professionals specializing in

ASDASD Student practicum placementsStudent practicum placements Opportunities to develop and use new treatment Opportunities to develop and use new treatment

approachesapproaches


Systems of CareSystems of Care-Recommendations--Recommendations-

Examine programs in neighboring Examine programs in neighboring statesstates

Consider integrated services Consider integrated services ASD-related training is a priority in ASD-related training is a priority in

ALAL Need a comprehensive and Need a comprehensive and

coordinated system of care across coordinated system of care across the lifespanthe lifespan

Strengthen statewide advocacy - ASAStrengthen statewide advocacy - ASA


Financial ImpactFinancial Impact-Summary--Summary-

Financial implications of meeting the Financial implications of meeting the training and service delivery needs of training and service delivery needs of individuals with ASD and their families in individuals with ASD and their families in AL are substantial and should be given AL are substantial and should be given careful considerationcareful consideration

Monies spent early in life can decrease Monies spent early in life can decrease dollars needed later dollars needed later

Early intervention programs for ASD are Early intervention programs for ASD are estimated to save society more than estimated to save society more than $200,000 per child by the time the child $200,000 per child by the time the child reaches adulthoodreaches adulthood


Financial ImpactFinancial Impact-Recommendations--Recommendations-

State resources need to be State resources need to be permanently allocated to these permanently allocated to these efforts in the form of budget line efforts in the form of budget line itemsitems

Increase rate of provider Increase rate of provider reimbursement to increase the reimbursement to increase the number of services available to number of services available to individuals with ASDindividuals with ASD

Increase state support for services to Increase state support for services to decrease financial burden for familiesdecrease financial burden for families

Alabama Alabama Autism Task Force Autism Task Force

& & AdvocacyAdvocacy


Subcommittee Leadership – Subcommittee Leadership – Year 1Year 1

Chairman Cam Ward, AL Rep. Dist. Chairman Cam Ward, AL Rep. Dist. 4949

SubcommitteesSubcommittees Training & Education Training & Education (Jim Wrye)(Jim Wrye) HealthcareHealthcare (Bama Hager) (Bama Hager) Family Support Family Support (Matt Remick )(Matt Remick ) Systems of CareSystems of Care (Lee Yount) (Lee Yount) Intervention Intervention (Tim Ferguson)(Tim Ferguson)


Areas to be exploredAreas to be explored


Recommendations from Recommendations from Year 1Year 1

• 22 recommendations were developed 22 recommendations were developed by considering findings of the by considering findings of the statewide needs assessment statewide needs assessment

• Task Force recommendations Task Force recommendations indicated a need for an Interagency indicated a need for an Interagency Autism Coordinating Council and a Autism Coordinating Council and a Regional Center frameworkRegional Center framework

• Additionally, it was determined that Additionally, it was determined that the Task Force subcommittees for the Task Force subcommittees for Year 2 needed reorganizationYear 2 needed reorganization


Advocacy EffortsAdvocacy Efforts

Autism Awareness Day – held April Autism Awareness Day – held April 3, 2008 at State Capitol3, 2008 at State Capitol

Development of brochure in Development of brochure in collaboration with the Alabama collaboration with the Alabama Autism Surveillance Project, the Autism Surveillance Project, the Alabama Autism Collaborative Alabama Autism Collaborative Group, the Alabama Task Force, and Group, the Alabama Task Force, and the Autism Society of Alabamathe Autism Society of Alabama


House Bill 150 / HJR 12House Bill 150 / HJR 122008 regular legislative session2008 regular legislative session

HB 150HB 150 ( (Alabama Autism Support Alabama Autism Support ActAct)) Focus: establish members and duties of Focus: establish members and duties of

Interagency Autism Coordinating CouncilInteragency Autism Coordinating Council Before the session ended, HB 150 Before the session ended, HB 150

became HJR 3 and was enactedbecame HJR 3 and was enacted HJR 12 HJR 12

Extended the Autism Task Force 1 more Extended the Autism Task Force 1 more yearyear


Subcommittee Leadership – Subcommittee Leadership – Year 2Year 2

SubcommitteesSubcommittees Early Screening & DiagnosisEarly Screening & Diagnosis (Hanes (Hanes

Swingle)Swingle) Intervention Intervention

0-5 0-5 (Elizabeth Griffith)(Elizabeth Griffith) 6-21 6-21 (Jim Wrye)(Jim Wrye) AdultAdult (Joe Carter) (Joe Carter)

HealthcareHealthcare (Bama Hager) (Bama Hager) Systems of Care Systems of Care (Jennifer Sellers )(Jennifer Sellers ) Financial ImpactFinancial Impact (John Houston) (John Houston)


Areas of Focus – Year 2Areas of Focus – Year 2

Diagnosis & ScreeningDiagnosis & Screening InterventionIntervention

Birth - 5 yearsBirth - 5 years 6 - 21 years6 - 21 years AdultAdult

Medical/HealthcareMedical/Healthcare Systems of CareSystems of Care


Interagency Autism Interagency Autism Coordinating Council Coordinating Council

(IACC)(IACC)

DMH/MR as lead agencyDMH/MR as lead agency Will hire an Autism CoordinatorWill hire an Autism Coordinator Continue work of Task Force as a Continue work of Task Force as a

more permanent councilmore permanent council


Ongoing Advocacy Ongoing Advocacy EffortsEfforts

Reduce the average age of diagnosis Reduce the average age of diagnosis in Alabamain Alabama

Increase the hours of targeted Increase the hours of targeted intervention available for children intervention available for children birth – 5 yearsbirth – 5 years A challenge due to decreased tax A challenge due to decreased tax

revenues in ’08!revenues in ’08! Increase access to evidence-based Increase access to evidence-based

interventions and trained providersinterventions and trained providers


Upcoming MeetingsUpcoming Meetings Meetings are open to public & posted online at: Meetings are open to public & posted online at:

www.autism-alabama.orgwww.autism-alabama.org www.camward.comwww.camward.com

Intervention birth – 5 years Subcommittee Intervention birth – 5 years Subcommittee MeetingMeeting Tues, Dec. 2Tues, Dec. 2ndnd, 1:00-3:00 p.m. in Rm 123 of State , 1:00-3:00 p.m. in Rm 123 of State

HouseHouse Diagnosis and Screening Subcommittee Diagnosis and Screening Subcommittee

MeetingMeeting Wed, December 10Wed, December 10thth, 10:00 – 2:00 p.m. in Rm 123 of , 10:00 – 2:00 p.m. in Rm 123 of

State HouseState House Please participate!Please participate!


For more information For more information regarding Needs regarding Needs

AssessmentAssessment

Dr. Beverly Mulvihill, PIDr. Beverly Mulvihill, PI

UAB School of Public UAB School of Public Health Health

1530 31530 3rdrd Avenue So., Avenue So., RPHB 320, RPHB 320, Birmingham, AL Birmingham, AL 35294-0022, Tel. 205-35294-0022, Tel. 205-934-7161934-7161


For more information For more information regarding Task Forceregarding Task Force

Rep. Cam WardRep. Cam Ward www.camward.comwww.camward.com

Autism Society of Autism Society of AlabamaAlabama www.autism-alabama.owww.autism-alabama.o

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implications of the 2008 statewide autism needs assessment presented at the 24 th annual early...

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