Setting the Stage for Change...Setting the Stage for Change Drafting Maine’s State Plan for...

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


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


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 PDD

a

Represents Problem Areas identified by PDD System of Care Group


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


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


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

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


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


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 Cronin Maine Developmental Disabilities Council 1-800-244-3990 [email protected]

Setting the Stage for Change...Setting the Stage for Change Drafting Maine’s State Plan for...

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