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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!)
37
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!
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