Post on 17-Sep-2020
Setting the Stage for Change
Drafting Maine’s State Plan for Individuals with ASD
Nancy Cronin, MA
ASD Systems Change Initiative Coordinator
ASD Interagency Systems Change Initiative Public 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 Initiative Process 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 Mapping 4 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 PDD
a
Represents Problem Areas identified by PDD System of Care Group
Maine Developmental Disabilities Council
Children's Behavioral Health Services T
T <
2SD
>
2SD
>
2SD
<
2SD
Mental
Health Substance Abuse
Correction
Homelessness
Crisis
Vocational
Rehabilitation
No Long Term
Supports
Long
Term
Supports
>2SD
Eligible
DHHS/D
S
Continuing
Education Individual / Self
Referral
Adult
Protection
Developmental
Services
Waiver Eligible but
Slot Limited
Mental
Health Substance Abuse
Correction
Homelessness
Crisis
Transition Planning Department of Education
Overview of the service systems involved in Transition Services for Youth with PDD
a
Parent Referral
Represents Problem Areas identified by PDD System of Care Group
Maine Developmental Disabilities Council
DRILL DOWN
• Early Identification Value Stream Mapping PDD/Autism Current Experience of the Process
CD
SD
iag
no
sticia
nP
hysic
ian
Th
era
pie
sM
ed
ica
l Is
su
es
Pa
ren
t
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 Worry
Wait 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
Develop
mental
Therapy
Report
Meeting
s
Developmental
Domain Report
– Eligibility
Meetings
Eligibility
Assessment
Observation
Multi-Disciplinary
EvaluationIFSP/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
ConsultationFormal
Screening
with PCP
0-3
Eligibility
determination
CDS
Screening
Bookend
Behavior concrnBookend
Diagnosis or Rule out
Family,
caregivers,
etc
PCP
CDS
0-3 years
3-5 years
1d120
d365d
15d 15d15d
7d 9.5d21d
16d 16d16d
1d 1,826
B AW
PCP Referral
Screening
3-5
Domain
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
Bookend
Behavior concrn
Bookend
Diagnosis 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 Cronin Maine Developmental Disabilities Council 1-800-244-3990 nancy.e.cronin@maine.gov