1. Implementing an Early Childhood Developmental Screening and Surveillance Program in Primary Care Settings in the State of Illinois: Lessons Learned
Anita Berry MSN, CNP, APN, PMHS
Director, Healthy Steps Program, Advocate Children’s Hospital
Patty Mack MA, RN, LMFT, LPHA
Healthy Steps Specialist, Consultant, Advocate Children’s Hospital

2. Enhancing Developmentally Oriented Primary Care (EDOPC)
Who - Advocate Children’s Hospital, the Illinois Chapter American Academy of Pediatrics, the Illinois Academy of Family Practice, the Ounce of Prevention Fund, and the Illinois Department of Health Care and Family Services Goal – improve the financing, and delivery of preventive health and developmental services for children birth to age 3 years in the state of Illinois.
EDOPC was a project among Advocate Children’s Hospital, Advocate Health Care, the Illinois Chapter American Academy of Pediatrics, the Illinois Academy of Family Practice, the Ounce of Prevention Fund, and the Illinois Department of Health Care and Family Services with a goal of improving the financing, and delivery of preventive health and developmental services for children birth to age 3 years in the state of Illinois.
Launched in 2005
Goals
Improve delivery/ financing of preventive health and developmental services for children 0-3
To build on existing programs to develop a range of strategies for primary care settings
Project ran 2004 – IAFP and the Ounce participated in the first three years IDHFS – participated the last 6 years
Why EDOPC
The project was unique in that it engaged many funders, stakeholders, and partners in health care and community-based settings. Through partnerships forged with primary care providers, EPODC aimed to improve the financing and delivery of preventive health and developmental services for children in the state of Illinois.

3. Professional education Ongoing technical assistance for practices
Methods
Professional education
Ongoing technical assistance for practices
Emphasis on referral and connection with community resources
Collection of policy-relevant information on barriers to care
Opportunity for collaboration with stakeholders
Access to resources via EDOPC website
1st with academic detailing, later more web-based and teleconference based

4. Presentation Topics Global development screening
Maternal depression screening
Social/emotional screening
Early autism detection and screening
Coordinating care between early intervention and the primary health care home
Domestic violence screening*
Effects of domestic violence on children*
Early childhood obesity prevention*
Early childhood behavioral modification and limit setting*
Psychosocial issues for children ages 5 to 8 years*
Effects of trauma and violence on young children*
Bright Futures Guidelines for Health Supervision and Bright Futures Tool and Resource Kit birth to 10 years
American Academy of Pediatrics Mental Health Tool Kit for Primary Care*
* Designates topics focused on Mental Health

5. Why Screen and Refer
12% to 16% of American children meet diagnostic criteria for developmental or behavioral disorder
Best long-term outcomes when they receive early intervention (EI) services designed
Research confirms effectiveness of EI
Cost savings
It is estimated that 12% to 16% of American children meet diagnostic criteria for either a developmental or behavioral disorder (Garzon, Thrasher, & Tiernan,
2010; Mackrides & Ryherd, 2011).
Children with developmental disorders have the best long-term outcomes when they receive tailored early intervention designed to maximize their individual potential.
Significant research confirms the effectiveness of early intervention before age 3 years for these children and their families (Mackrides & Ryherd, 2011; Sand et al., 2005).
One program in Minnesota demonstrated an $8 return for every dollar invested in early intervention, with benefits to society including more efficient use of school services and less use of criminal justice and other public systems (Adams, Tapia, & The Council on Children with Disabilities, 2013).
Wait and See Approach - The Centers for Disease Control and Prevention reports that the median age at diagnosis for autism is 48 months and that the median age at diagnosis for autism spectrum disorder/pervasive developmental disorder is 53 months (Daniels, Halladay, Shih, Elder, & Dawson, 2014).

6. Surveillance, Screening, Checklists
What is happening in your practice now?
Define
Surveillance
Screening
Checklist
Surveillance - Nearly all pediatric health professionals practice surveillance. According to Paul Dworkin, surveillance is a flexible, continuous process… whereby knowledgeable professionals perform skilled observations of children during the provision of health care.
This would include
eliciting and attending to parental concerns
obtaining a relevant development history
making accurate and informative observations of children, and
sharing opinions and concerns with other relevant professionals.
[reference: Paul Dworkin: Curr Opin Pediatr. 1993; 5: ]
Screening - a brief procedure, using a standardized commercially developmental tool, to determine whether a child requires further and more-comprehensive evaluation
Administration of a brief standardized tool aiding the identification of children at risk of developmental disorder (AAP 2006)
Goal is to differentiate children who are probably doing fine from those needing further evaluation
Checklist – home made list possibly taken from a list of developmental milestones or some screening tool
Primary care providers (PCP) routinely use developmental surveillance in their practices
Clinical practice guidelines recommend routine use of standardized developmental screening, using validated developmental screening tools
Because of increased recognition of these issues, recognizing that the primary care practitioner’s office is the place most children less than 5 are seen regularly, and increased system responses to these issues, the AAP issued dev screening guidelines in 2001 and revised them in Before this time only about 20% of pediatricians reported regularly using standardized developmental instruments regularly.

7. Screening Tools for Primary Care
Ages and Stages Questionnaire third edition (ASQ-3)
Ages and Stages Questionnaire: Social Emotional (ASQ:SE)
Infant Development Inventory (IDI)
Child Development Inventory
Parents’ Evaluation of Developmental Status (PEDS)
Edinburgh Postnatal Depression Scale (EPDS)
Patient Health Questionnaire -9 (PHQ-9)
Modified Checklist for Autism in Toddlers Revised/Follow UP (M-CHAT R/F)
Hurts, Insults, Threatens, Screams at (HITS)*
Pediatric Symptom Checklist (PSC)
* Not currently billable in Illinois

8. Detection Rates Without Screening Tools With Screening Tools
20% of mental health problems identified
(Lavigne et al. Pediatr. 1993; 91: )
30% of developmental disabilities identified
(Palfrey et al. JPEDS. 1994; 111:
80-90% with mental health problems identified
(Sturner, JDBP 1991; 12:51-64)
70-80% with developmental disabilities correctly identified
(Squires et al., JDBP 1996; 17:
On the left are the detection rates without using validated screening tools. Without these tools, only 20-30% of children with delays are identified.
On the right are the detection rates you can expect if you use good quality screening tools correctly. Almost three times as many children with developmental and behavioral problems will be correctly detected when providers use these tools rather than only using professional judgment alone.
If we look at developmental status repeatedly over time, detection rates longitudinally should be substantially higher.
copyright EDOPC 2007

9. What to Expect When Screening All Children in A Practice
11%: high risk of disabilities & need referrals for further evaluations 20%: low risk of disabilities & need behavioral guidance 26%: moderate risk of disabilities & need developmental promotion/vigilance 43%: low risk of disabilities & need routine monitoring
Extensive research conducted by Francis Glascoe on children’s behavior and development reveals the following:
11% of children have a high risk of disabilities and need referrals for further evaluations.
20% have a low risk of disabilities and need mostly behavioral guidance.
26% have a moderate risk of disabilities and need screening developmental promotion and vigilance.
43% have a low risk of disabilities and need only routine monitoring.
This is what you can expect to see when you are screening all children in your practice routinely. 9

10. Getting a Project Started
Need the “Perfect Storm”
Interest from key groups
Key partners
Funders
More specific to EDOPC
Emerging clinical recommendations
Changes in policy such as Medicaid reimbursement

11. Data Regarding Developmental Screening
90% of providers reported an increase in skills and confidence after EDOPC intervention
Prior to project 10% of children screened
Sites reported before intervention 33% screened by one year visit; one year after intervention approximately 69%
Findings from these data indicated that 90% of providers reported an increase in skills and confidence regarding developmental screening after EDOPC intervention.
Additionally, sites reported an increase in screening at the visits conducted at 1 year (approximately one fourth of sites performed screening and fewer than 33% of patients were screened before the
intervention vs. 69% of sites that performed screening and 85% of children who were screened after the intervention), at 2 years (approximately 10% of sites performed screening and fewer than 45% of patients were screened before the intervention vs. 69% of sites that performed screening and 85% of children who were screened after the intervention), and at 18 months (6% of sites performed screened before the intervention vs. 47% of sites that performed screening and 85% of children who were screened after the intervention; Prior to the (Allen, Berry, Brewster, Chalasani, & Mack,
2010). intervention, fewer than 10% of children were being screened.

12. Screening in Illinois Before and After EDOPC Training Intervention
12 and 18 month visits
before
before

13. Screening in Illinois Before and After EDOPC Training Intervention
2 year visit

14. CHIPRA Child Core Set Data Book: ODS Performance

15. State’s Steps to Improve Reporting of Developmental Screening
Prioritize reporting of the Developmental Screening measure within the Medicaid agency.
Reimburse providers for the code.
“Unbundle” the code, for example from EPSDT payments.
Partner across payers, providers, and other systems to collaborate on performance improvement.
Reinforce the importance of developmental screening
Engage with providers and office staff on the benefits of developmental screening, the importance of recording the CPT code.
Prioritize the Developmental Screening measure in the state’s Medicaid Performance Improvement Projects (PIP) and in any provider pay-for-performance (P4P) programs.
Based on conversations with states, we identified various steps that state’s can take to be able to report the measure according to the measure steward’s specification and ultimately drive improvement in the proportion of children who are screened.
states can prioritize the measure within the state agency. We know that states have been asked to report on many measures, but we hope that more states can prioritize reporting on this measure by, for example, requiring all Medicaid health plans to collect and report the measure to the agency.
States can also reimburse providers for the CPT code. [say what this is if we haven’t already covered this.] The DEV measure specification requires states using the administrative approach to use this specific code to calculate the measure result. If states pay providers for screening through the code, then the financial incentive will drive provider performing and reporting of screenings through the code.
states can “unbundle” the developmental screening, specifically the code, from a bundled payment, such as a well-child visit or EPSDT payment. Offering separate payment for the code or just asking providers to report the code on the claim or encounter even if they are not reimbursed separately for it, will increase the ability of states to collect accurate and complete information for reporting the measure results.
states can partner across payers and other parts of the health care and child serving systems to improve screening rates. We heard that many states partner with their local American Academy of Pediatrics chapters to discuss opportunities to work with primary care providers to increase developmental screening. We also heard from states working with health plans to improve performance. For example, one state worked with a large Commercial and Medicaid health plan to pay for the code across all members and lines of business. This improved reporting of the code, because provider offices could use the same clinical and coding practices across all payers.
States can also offer information in their Medicaid Provider Manuals to help providers perform screenings, such as access to validated screening tools and referral resources for providers to contact if a screening produces a positive result. The Handbook for Providers of Healthy Kids Services that Julie mentioned is great example of a resource.
States can with work with providers and office staff to incorporate screening and reporting into practice flow through existing medical homes program and child health improvement partnerships. For example, medical home consultants can offer 1 on 1 assistance to implement screening protocols into their practice flow . States can also work 1 and 1 with providers and office staff to bill the code when appropriate. This improves the availability of the data needed to calculate the measure result.
Lastly, states can drive quality improvement in developmental screening by including this measure as a focus area in their Medicaid PIPs, as well as reward providers with improved screening rates.
And now, I will turn it over to Michaela Vine to discuss an upcoming technical assistance opportunity.

16. Barrier and Solutions to Screening
Barriers - Provider Expectations
perform physical examination,
administer appropriate
medical screenings
provide vaccinations and
laboratory testing
elicit parental concerns
educate caregivers
provide anticipatory guidance
conduct developmental and mental health
surveillance and/or screening
identify family risk factors and determine the need for referral(s)
lack of sufficient resources solutions
team approach
most frequently cited barrier to developmental screening by primary care providers is lack of time (Sand et al., 2005)
One or two professional staff members should take the lead in implementing the developmental screening program in the practice.
The providers have the knowledge and understanding of the tools. They are also best informed about how to discuss the results thoroughly with families whose children show delays and how to answer questions about development and behavior.
Paraprofessionals can best take responsibility for making the system run smoothly. They can prepare materials for distribution, provide basic guidance to families on how to complete the tools, collect completed materials, score the tools, and provide routine feedback to families of children who are not identified as requiring further assessment. They may also distribute age-appropriate developmental materials to families as part of the practice’s patient education procedures. And they can maintain and update lists of local service providers and specialists that all the practice staff need to make referrals.
Solution Team Approach
Enthusiastic Champion
Leads the team
Encourages members
Knowledgeable resource
The Team Approach
We recommend you work as a team to address these and other issues, beginning now. But the team may need to meet regularly at first to discuss how things are going, to solve problems, and to generate new ideas. Involving all the staff in decision making will help get buy-in and participation. Your staff can be very creative, and everyone will be willing to participate fully when they understand the benefits to the children, their families, the practice and society. And training is
important; once roles are assigned and understood, everyone should be trained in how to perform their specific functions.
Some issues to consider:
Which screenings are going to be performed at what intervals? 6 month or 9 month visit, 15 or 18 month visit, and 24 or 30 month visit.
How do you make time for the screening, scoring, and discussing results?
Which members of the office team can be delegated to which tasks?
Who are community partners who are also screening children?
Who is communicating results and the status of referrals?
Solves problems
Generates new ideas
Encourages participation
Requires training
Examples for Staff roles:
Secretarial staff are key in ordering, reproducing and re-ordering supplies. They will need to maintain master copies and have a handle on how many copies a practice will need for the following month. They will formulate the plan for where to store materials and how to distribute and collect the materials.
Medical records staff can prepare charts prior to the office visit and pull and insert the appropriate screening tool. They will need to know the age of child and the practice’s guidelines for which screening test to use at which visit. They may need to calculate for prematurity in some cases.
The receptionist is the first person families see when they enter the practice and is the first person to greet families. The receptionist should be able to offer the family the form and explain its purpose in a manner that makes them feel comfortable and doesn’t alarm them. The receptionist will also ask the parent or caregiver if she may need assistance completing the form. This might involve assessing the state of the waiting area, or noting how many other children the parent has brought and if that might affect her ability to complete the tool. Your front office staff will need training in how to offer assistance; for instance, asking “Would you like to complete the form on your own or have someone go through it with you?”
Medical Assistants could be involved in scoring the tools. They will need to understand each screening test used in the practice and the techniques for proper scoring.
Registered Nurses can be involved in screening, scoring, and discussing child developmental and behavioral concerns with caregivers, particularly when the tests show that the children are developing normally and guidance focuses on basic parenting and supports. They can also help with referrals to community resources.
Physicians, Nurse Practitioners, and Physician Assistants should be involved in reviewing all completed forms. They should also help monitor scoring to ensure that red flags and items with multiple interpretations are addressed. When indicated, the physician, nurse practitioner or PA would also be the staff member to administer a secondary screening. These medical professionals should also discuss results and concerns with families and make appropriate referrals to community resources and plan for a follow up appointment.
Parents
Parents are reservoirs of rich information, experts on their children
Screening structures observations, reports, and communication about child development
Screening becomes a teaching tool for parents and health care professionals
Screening improves relationships
Parent involvement reduces cost
Screening tools help parents to focus on specific questions they may have about their child’s development. Completing the questionnaire and setting an agenda for discussion jointly at a well child visit builds the relationships between the parent and child, and also between the parent and the provider. Parents will become more aware of their ability to use you for non-medical concerns.
Parent involvement can help reduce cost. Tools that are completed by parents, either in the waiting room or outside the office, require less time than some surveillance techniques.

17. Communicating Results
Use language that encourages follow-up
Be sensitive to cultural meaning of words
Focus on positives first
Practice your language
“Excellent gross motor skills”
“He has a wonderful temperament, so adaptable”
“Would like to help him learn and grow to his full potential”
“Needs some extra attention and support”
How you communicate test results to parents is very important, particularly in cases when the test results indicate further screening or referral.
Always look at the strengths of the child and of the family. Point out the child’s positive areas of development or areas of temperament before discussing the problem areas. Parents want to know that you think their child is great. Find ways to compliment the parent before addressing the areas of potential concern.
The specific language you use can be very important in setting the tone of the discussion. Do not use diagnostic language such as “mental retardation” or “developmental delay.” Instead, find phrases you are comfortable with that prepare the parents for further evaluation. “Children develop differently, and some need extra attention and support during their earliest years. We both want Billy to learn and grow to his full potential, so we need to make sure we know how to support that.” 17

18. Incorporating a Change in Practice: Using Plan Do Study Act Model (PDSA Cycles)
PLAN: Plan a change or test how something works
DO: Carry out the plan
STUDY: Look at the results. What did you find out?
ACT: Decide what actions should be taken to improve
PLAN: Plan a change or test of how something works.
DO: Carry out the plan.
STUDY: Look at the results. What did you find out?
ACT: Decide what actions should be taken to improve.
Repeat as needed until the desired goal is achieved
When does it work best? You may not get the results you expect when making changes to your processes, so it is safer, and more effective to test out improvements on a small scale before implementing them across the board. Using PDSA cycles enables you to test out changes before wholesale implementation and gives stakeholders the opportunity to see if the proposed change will work.
Using the PDSA cycle involves testing new change ideas on a small scale. By building on the learning from these test cycles in a structured way, you can put a new idea in place with greater chances of success
As with any change, ownership is key to implementing the improvement successfully. If you involve a range of colleagues in trying something out on a small scale before it is fully operational, you will reduce the barriers to change.
Why test change before implementing it?
It involves less time, money and risk
•The process is a powerful tool for learning; from both ideas that work and those that don't
•It is safer and less disruptive for patients and staff
•Because people have been involved in testing and developing the ideas, there is often less resistance
Repeat as needed
Until desired goal is achieved 18

19. Questions – Technical Assistance
Anita Berry Website:
Developmental screening and referral services are vital to children’s health. Therefore, practices should feel comfortable billing for provision of screening services.
For your patients on public aid programs such as Medicaid and All Kids, the Illinois Department of Healthcare and Family Services (formerly the Illinois Department of Public Aid) does reimburse providers for using any of 20 developmental screening tools. These tools include the Ages and Stages Questionnaire we discussed today, as well as others such as the PEDS screen.
To bill Medicaid/All Kids for screening, providers must be implementing the screening consistently with all patients and billing all patients for the service.
In addition, practices should review their insurance contracts for the applicable developmental screening codes to see what private insurance carriers will reimburse.