August 2014 SPHARC Peer to Peer

JOSIE THOMAS

The Parents’ Place of Maryland

MEREDITH PYLE and DEBBIE BADAWI

Maryland Office for Genetics and People with Special Health Care Needs

Maryland’s ASD/DD Quality Improvement Learning Collaborative

SCREENING AND BEYOND

F2F, PTI, MD Family Voices, etc.

What do we do?

One-on-one assistance for families

Information and resources for families and providers

Workshops and training for families & providers statewide

Parent leadership development

Systems change to improve services

The Parents’ Place of Maryland

Maryland’s Title V CYSHCN Program

Infrastructure and Systems Development

Medical Homes Program

Health Care Transition Program

Resource Locator – Online and Phone

Special Projects – ASD/DD and CYE Grants w/PPMD

Newborn Screening Follow Up

Birth Defects Reporting

Children’s Medical Services

PPMD & OGPSHCN Partnership

Family to Family Health Information Center

Maryland COC (D70 grant)

ASD/DD State Planning Grant

ASD State Implementation grant

CYE State Access Improvement Project

Data

= shared knowledge

base

Parents/Families

Government Agencies

Health Care Providers

Advocacy Groups

Service Agencies

ASD/DD Planning Grant 2011 – 2013

Systems Change/Improvement for Maryland CYSHCN

ASD/ DD

CYE

Joint Projects PPMD & OGPSHCN

What’s Happening in Maryland?

Autism

Some Good News!

Maryland ADDM Data Age of Dx

2008 2010 Change

Overall earliest age (median) of Dx w/ASD

66 mos. 56 mos. -10 mos.

Autistic Disorder 59 mos. 50 mos. -9 mos.

PDD-NOS 67 mos. 55 mos. -12 mos.

Asperger Disorder 79 mos. 74 mos. -5 mos.

Developmental Screening

Standardized Developmental Screening during health care visit

2011/12 2007

Maryland 31.8 22.3

Nationwide 30.8 19.5

Source: National Survey of Children’s Health (2011/12 & 2007)

Developmental Screening

By Race/Ethnicity

Source: 2011/12 National Survey of Children’s Health

15

35.3 34.3 34.4 32.4

29.9 31.7 31.2

0

5

10

15

20

25

30

35

40

Hispanic White Black Other

Maryland Nationwide

Developmental Screening

One or more EBD Non-CSHCN

Maryland 57.2 31.88

Nationwide 41.6 29.9

Source: 2011/12 National Survey of Children’s Health

MD: Developmental Screening 2007-2014

Maryland’s

“State Implementation

Grant for Improving

Services for Maryland

Children and Youth with

Autism Spectrum Disorder and other

Developmental Disabilities”

• Strengthen the leadership and infrastructure needed to identify Maryland CYSHCN-ASD/DD by 24 months and ensure access to a family-centered medical home and comprehensive, coordinated care

• Reduce barriers to screening, referral and diagnostic services and increase access to medical homes that coordinate care with pediatric subspecialties

• Support the development of family-professional partnerships among CYSHCN-ASD/DD and the system of care.

Overall Goals

Desired Project Outcomes

By Y3Q4, the percentage of CYSHCN – ASD/DD:

• who are identified by 24 month of age;

• receive first evaluation by 36 months of age; and

• are enrolled in interventions services by 48 months of age;

will increase by at least 10% from the baseline.

The Team

Project Directors Josie Thomas, Executive Director,

PPMD Debbie Badawi, Medical Director,

OGPSHCN

Project Manager Meredith Pyle, Chief of ISDU,

OGPSHCN

Project Coordinators Kseniya Rubejanskaya – ASD/DD,

PPMD/OGPSHCN Stacy Taylor – CYE, PPMD

Parent Partner Coordinator Pattie Archuleta, PPMD

Medical Home Coordinator Mary Jo Harris, MS, OGPSHCN

Medical Homes and Youth Transition Associate Rebecca Furman, PPMD/ OGPSHCN

MPIP/ NIPN Mark Weissman, MD, Director Tamara John, QI Coach Paula Minsk, Executive Director, MD

AAP

Our Project Partners!

Improvement Partners

The Practices

Improvement Partners

QI Learning Collaborative: Screening and Beyond

A Learning Collaborative - a model for conducting a targeted quality improvement project with:

a defined improvement aim

outcomes measures

timeframe

Improvement Partners

QI Learning Collaborative Model

Participate in QI as practice team – get individual MOC (Part 4) & up to 15 CME credits

12 month “virtual” project (June 2014– May 2015)

Web-based learning conferences (live or recorded)

Baseline and monthly chart audits to measure care & improvement

Patient roster tool to identify & track children in the participating practices with ASD/DD

Monthly practice team meeting to look at data & implement mini-improvements

Monthly team leader project calls with other practices to share data & tips

Hands-on QI coaching in practices & by phone

Parent Partner for each participating practice

“Model for Improvement”: PLAN-DO-STUDY-ACT

What are we trying to accomplish?

How will we know that a change is an improvement?

What change can we make that will result in improvement?

Act Plan

Do

From: Associates in Process Improvement

Aim

Measures

Ideas

Act Plan

Study Do

Improvement Partners

Plan

Do

Study

Act PDSA

Plan a Change Identify opportunity What is the problem Suggest the causes Design the change

Do On a small scale

implement change Where you can

control setting Study

Collect data Analyze data

Act Did your change

make a positive or negative change?

If positive, standardize within your practice

Monitor your change over time

What will you work on next?

Three PDSA cycles over 9 months

Implement and measure test of change in practices to improve care for children with ASD/DD

Improvement Partners

Hunches, Theories,

Ideas

Changes That Result in Improvement

A P

S D

A P

S D

Very Small Scale Test

Follow-up Tests

Wide-Scale Tests of Change

Implementation of Change

Repeated Use of the PDSA Cycle: Small scale pilots spread success practice-wide

Improvement Partners

Implement & measure tests of change in practices

After benchmarking practice data (Practice Readiness survey / chart audit),

each practice will be required to develop PDSA pilots

Moves practices closer to shared goal - improving ASDD/DD

care in practice

Measure results of PDSA

Limited monthly chart audit to measure success/impact

Review results and make adjustments to improve

Document three PDSA cycles over 9 months

Improvement Partners

Significant practice improvement in nationally recommended asthma care measures

Previous learning collaboratives had great results!

We are using this model to improve our care for children with ASD and other DDs!

Learning Collaborative Objectives and Measures

Objective A and Related Measures

Increase the percentage of CYSHCN-ASD/DD who are identified by 24 months of age by 10% above baseline

MEASURES:

• % of annual well child visits at 9, 18 and 24 months where an approved general developmental screening tool is administered, scored and documented.

• % of annual well child visits at 18 and 24 months where an approved autism screening tool is administered, scored and documented.

• % where administration of a screening tool for children < 24 months of age is appropriately coded and/or billed.

Objective B and Related Measures

Increase the percentage of CYSHCN-ASD/DD who receive their first developmental evaluation by 36 months of age by 10% above baseline

MEASURES:

• Increase % of children < 36 months of age who fail screening that have a documented referral to early intervention.

• Increase % of children < 36 months of age who fail screening that have a documented referral for diagnostic evaluation.

• Increase % of children < 36 months of age referred to early intervention or a diagnostic evaluation who have documented follow up on referral

Objective B Measures, continued

• Increase % of parents of children < 36 months of age referred for diagnostic evaluation and/or early intervention who have been contacted by a Parent Partner (increase by 25% above baseline)

Objective C and Related Measures

Increase the percentage of CYSHCN-ASD/DD who are enrolled in intervention services by 48 months of age.

MEASURES:

• % of children referred to early intervention, special education or community-based habilitative services < 48 months of age who have documentation regarding entry into services (Goal: 10% above baseline)

• % of parents of children < 48 months of age referred for diagnostic evaluation and/or early intervention who have been contacted by a Parent Partner. (Goal: 25% above baseline)

Chart audit tools & QI coach visit

36

Chart audits:

Baseline chart audits to benchmark

Monthly audits to measure progress on key measures

No identified patient information

Submit electronically

We make it easy

User-friendly tools

Practice site visit by QI coach to get you started

QI Team Space

QI project website to submit and see practice data

Archived learning sessions, videos & webinars

Practice resources for improving screening (and beyond!)

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Sample practice report cards

Improvement Partners

Assembling Practice QI teams

Practice teams need improvement champions - individuals willing to lead other practitioners and care team members in measuring care, identifying gaps and potential improvements, pilot small improvement cycles, implement successes practice wide.

Practice physician champion(s)

Practice project lead/coordinator (data, documentation)

Office staff representative (nurse, admin)

Parent Partner (provided through project)

Why Parent Partners?

The Medical Home Quality Improvement team cannot

appropriately review the quality of their service without

the input of the consumer – the individual families with

whom they work.

Parent Partners in the Learning Collaborative

Benefits of working with Parent Partners

Meaningful family engagement

Helps to improve quality of service delivery

Input regarding the challenges families experience

Improved communication and partnership with families

On-going support and feedback loop from families

Information on community and state resources

Better health outcomes for children

Parent Partners in the Learning Collaborative

Parents of CYSHCN have an extremely rich and valuable

perspective

Have time to commit (access to childcare, etc.)

Emotionally ready to look outside of themselves and family

Enjoy working as part of a team – fit well into a group dynamic

Experience with local/state resources and multiple specialists

Able to share their personal story in a meaningful way

Confident and able to speak up in group settings

Good listeners and communicators

Key Traits of Parent Partners

When practice teams were asked what they thought was an

important trait in a parent partner. Almost all mentioned a

“sense of humor” as being extremely helpful.

~ The Center for Medical Home Improvement (CMHI) Hood Center for Children & Families

Key Traits of Parent Partners

Role of Parent Partners

Equal Members of the Quality Improvement team!

Participate as a member of the Medical Home QI Team

Meet with Medical Home QI Team on a regular basis

Provide input on changes as part of PDSA process

Participate in QI Learning Collaborative

Provide follow-up and resources to families

Administer the MHI and MHFI

Collect and report data

Role of Parent Partners

Care notebooks

Seizure action plan

Care plan for providers

Medication card

Developmental screening follow-up

Identify family resource needs and provide referral

Resource referral follow-up

Share resources with practice staff

Duties may include:

Duties will not include: Clerical help

Parent Partner Competence

Initial Training

Title V CSHCN

Status of CYSHYCN in Maryland

Family/Professional Partnerships

Community-based Resources

Quality Improvement/PDSA

HIPAA Compliance

Medical Home

Follow-Up Training

Independent Learning

MCH Navigator

Medical Home tools & resources

Monthly webinars

ASD and Epilepsy Boot Camps

Accessing existing resources

Medical Home Index and MHFI

Parent Partners Logistics

Helping Practices Prepare for their Parent Partner

Identify Parent Partner liaison/mentor within QI team

Identify Work Space for Parent Partner

o Meetings, improvement activities (PDSA cycles), and outreach

to families will be completed on-site at the medical practice.

Grant Team - Parent Partner Program Coordinator

o Provides on-going training, guidance, and supervision

Accreditations/Incentives

ACCME Accreditation through LifeBridge Health

Up to 15 credits for “Screening and Beyond”

CME certificates will be available at the end of the project

Practitioners will receive individual credit for practice team-based improvements

ABP MOC Part 4 QI credit (25 points)

Practices Receive $2500 Scholarships

Parent Partners

So far, it’s been exhausting, but

worth it!

Questions?

Thank you!