Setting the Stage for Change

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


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


How do people with ASD utilize the multiple systems of care?



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


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


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


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.


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


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


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


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


For more information Contact:Nancy CroninMaine Developmental Disabilities Council1-800-244-3990 [email protected]

Documents

Setting the Stage for Change