Setting the Stage for Change
Drafting Maine’s State Plan for Individuals with ASD
Nancy Cronin, MAASD Systems Change Initiative Coordinator
ASD Interagency Systems Change InitiativePublic and private collaboration since 2006, involving:
• DHHS Division of Early Childhood• Child Developmental Services• Psychologists• Developmental Evaluation Clinics• Medical Professionals• Early Childhood Educators• Child Care Providers• Office of MaineCare Services• Children with Special Health
Needs• Autism Society of Maine• DHHS Children’s Behavioral
Health Services• Disability Rights Center
• Parents• Department of Education• Speech and Occupational
Therapists• Center for Community Inclusion
and Disabilities Studies• Developmental Disabilities
Council• State Office of Information
Technology• Over 200 individuals with PDD,
family members, and professionals as commenter's
Maine Developmental Disabilities Council
ASD Systems Change InitiativeProcess for Change
• Value Stream Mapping
• Report Drafted and Approved by Stakeholder Group
• Request and Compile Public Comments
• Advisory Committee Recommendation on Action Steps
• Administration Approval of Action Steps/Plan
Maine Developmental Disabilities Council
Value Stream Mapping4 Full Days
• Family Group
– Current State
• Stakeholder Group (includes a smaller group of families)
– Current State
– Future State
– Implementation Plan
• Report drafted, vetted, and finally approved by stakeholder group and all families
Maine Developmental Disabilities Council
How do people with ASD utilize the multiple systems of care?
Maine Developmental Disabilities Council
Maine Developmental Disabilities Council
Parent
Pediatrician
Child Developmental Services (CDS)
DEC Clinic
Children's Behavioral Health Services/ Early Childhood Division
Parent Referral
1
2
3
4
Children's Behavioral Health Services
Department of Education
Overview of the service systems involved in early intervention for children with PDDa
Represents Problem Areas identified by PDD System of Care Group
Maine Developmental Disabilities Council
Children's Behavioral Health ServicesT
T< 2SD
> 2SD
> 2SD
< 2SD
Mental Health
Substance AbuseCorrectionHomelessnessCrisis
Vocational Rehabilitation
No Long Term Supports
Long Term
Supports>2SD
Eligible DHHS/D
S
Continuing Education
Individual / Self Referral
Adult Protection
Developmental ServicesWaiver Eligible butSlot Limited
Mental Health
Substance AbuseCorrectionHomelessnessCrisis
Transition PlanningDepartment of Education
Overview of the service systems involved in Transition Services for Youth with PDDa
Parent Referral
Represents Problem Areas identified by PDD System of Care Group
Maine Developmental Disabilities Council
DRILL DOWN
• Early Identification Value Stream MappingPDD/Autism Current Experience of the Process
CD
SD
iag
no
stic
ian
Ph
ysic
ian
Th
era
pie
sM
ed
ica
l Iss
ue
sP
are
nt
Birth
Slow Weight Gain
Food Issues
GI Problems
Seizures
Medications
GI Problems
Slow Weight Gain
Seizures
Food Issues
Medications
Physical Therapy
Developmental / Behavioral Concerns
Doctor
We WorryWait and See
Speech Therapy
Referral to CDSSome Developmental Delay
Referral to Diagnostician
Doctor
Speech Therapy
Medical Specialist
Audiologist
Tubes
Medications
Seizures
Food Issues
GI Problems
We BegOccupational
Therapist Report
Meetings
Speech Therapist
Report Meetings
Diagnostician Report
Meetings
Developmental
Therapy Report
Meetings
Developmental Domain Report
– Eligibility Meetings
Eligibility Assessment
Observation
Multi-Disciplinary Evaluation
IFSP/IEP
Speech Therapy
Occupational Therapy
Developmental Therapy
MULTIPLE SPECIALIST
VISITS
MULTIPLE SPECIALIST
VISITS
BirthDiagnosis/Rule
Out= Wait Time= Wait Time
= Decision Point= Decision Point
1m
3w 3w
1 Year 1 Year
1m
3w
3w
3w
1 Year
3 Months
3 Months
1 Month1 Month 1 Month 3 Months
3w
3w
3w
Maine Developmental Disabilities Council
Family Experience
• Their Doctor saying “Wait and See”• Delays• Some children have medical symptoms such as GI
Issues, Seizures, Dietary Issues• CDS System
The family stories document that obtaining a diagnosis takes an average of 31 months.
Maine Developmental Disabilities Council
Stakeholder Experience of Current System
Entity/Function Current State
Gathering Data
Professional Consultation
Formal Screening with PCP
0-3Eligibility
determination
CDS Screening
BookendBehavior concrn
BookendDiagnosis or Rule out
Family, caregivers,
etc
PCP
CDS
0-3 years
3-5 years
1d 120d365d
15d 15d15d
7d 9.5d21d
16d 16d16d
1d 1,826
B AW
PCP Referral
Screening
3-5Domain Specific
Eligibility determination
21d 56d38.5d
Evaluation(s)
30d 540d240d
240m 420600
20 2020m60m 60m60m
60m 120180
60 6060
240m 240240
480m 720960
CT
ST
Parental Processing
Maine Developmental Disabilities Council
Workgroup Future System
Entity/Function Future State
Universal Screening at
Well Child Visit
BookendBehavior concrn
BookendDiagnosis or Rule out
Family, caregivers,
etc
PCP
CDS
PCP Referral Evaluation(s)
0-3yr 2 wks – 3 Months
CDS / Services
1 2 3
Maine Developmental Disabilities Council
Putting Plans into Action
Early Identification
Achievements (as of 2010)
Developed Universal Screening Protocol
Tested protocol - Six Field Pilots, with over 3,500 children screened
Included screening tools in MaineCare well-child check forms
In Progress
Writing policy to ensure clear and consistent evaluation and diagnosis
Training physicians not to “wait-and-see”
Streamlining the Referral Process
Maine Developmental Disabilities Council
Rinse and Repeat
• Value Stream Mapping – Early Intervention– Transition
• Recommendation Formalized• Agency leads approve various action tasks
(Formal Approval of State Plan)
• Implement what you can and apply for grants to continue the work
Maine Developmental Disabilities Council
For more information Contact:Nancy CroninMaine Developmental Disabilities Council1-800-244-3990 [email protected]