Pediatric Developmental Surveillance Program

1. Pediatric Developmental Surveillance Program Wake County Human Services Raleigh, North Carolina Jean C. Smith, MD jcsmith@co.wake.nc.us CityMatCH Albuquerque, NM September 22, 2008

2. Pediatric Developmental Surveillance ProgramMission Statement The PDSP is a Wake County Human Services program initially funded in 1998 by Wake County Smart Start. Wake County medical providers and community partners are trained in developmental surveillance of children birth to 5 years of age in order to: • Enhance development • Assure early identification of developmental needs • Link to appropriate services to promote success in school and life.

3. “According to the Milestone Police, Charlotte should have been talking by eighteen months..” “I will always remember toddlerhood as the beginning of the stage of not knowing.” A Special Education: One family’s journey through the maze of learning disabilities Dana Buchman

4. Why is the early detection of developmental problems so critical? Children involved in early intervention programs are more likely: • To live independently • Graduate from high school • Save society $30,000-$100,000 per child

5. “Developmental” History of the PDSP Two previous projects in Wake County from the mid 1990’s: • Healthy Start project - providing PE’s and developmental assessments in child care settings with funding by Wake County Smart Start. • NC Health Choice enrollment initiative – a collaborative between Wake County Human Services and NC Pediatric Society for Wake County practices.

6. ALSO……. • AAP Committee on Children with Disabilities recommended the use of standardized screening tests periodically at well visits. • Early detection = early intervention. • North Carolina Division of Public Health outlined new Medicaid EPSDT screening guidelines.

7. Developmental Screening Tools PARENT QUESTIONNAIRES Ages & Stages Questionnaire (ASQ): 2 months-5yrs Parents’ Evaluations of Developmental Status (PEDS): 0-8yrs. DIRECT ELICITATION Brigance: 21 mos-7.5 yrs. www.dbpeds.org

8. “Do you think there’s anything wrong?” “I don’t know, do you?” “What could it be if there is?” “I don’t know, I wonder whom we'd ask?” A Special Education: One family’s journey through the maze of learning disabilities Dana Buchman

9. Where are infants & young children seen on a regular basis? WELL CHILD VISITS! In 2002, 84% of children < 6 years of age had a well-child visit in past year. In 2000, almost one half of parents had concerns about young child’s speech, social development, or behavior, but only about 45% of parents recalled any developmental assessment being done.

10. The Pediatric Developmental Surveillance Program “bottom line” Putting principles of developmental surveillance into practice and medical practices.

11. Conceptual Models Used in Development of PDSP • Academic Detailing – targeted one-on-one educational program • Process Planning – structured approach to implementation of a new program or procedure

12. PDSP Staff • Developmental-Behavioral Pediatrician • Program Manager • Child Health Nurse Supervisor • Developmental Specialists: 1 RN, 1 MSW, & 1 BS in Child Development

13. MethodsPDSP • Developmental Specialists (DS) directly collaborate with 41 medical practices • DS provides onsite screening, referral and follow-up of children with developmental concerns • DS provides onsite training and consultation to providers

14. Primary Care Practice: Parent completes primary screening tool at well child visits PCP identifies if need/risk present Refers to DS DS: Administers secondary screening tool Consults with PCP Refers for early intervention assessments and services Provides ongoing follow up with family How is this done?

15. Scenario • 18 month old is seen in the pediatric office • Parent completes ASQ questionnaire • Child shows areas of concern with speech • DS screens child with Brigance • Identifies need for referral to CDSA • DS assists with referral • Follows-up to ascertain child received services • Child presents at Kindergarten ready to learn!

16. “No one wants to have a ‘special needs’ child but finding the right resources is the key. You have provided all of this for us and we are extremely grateful.” Letter from a mother to the developmental specialist.

17. Working with Doctors Mentoring Primary Health Care Providers on Developmental Screening and Surveillance

18. Pediatric Developmental Surveillance Program Training • Implementation/Training • Mentoring/consultation • Surveillance/support • Continuing Quality Improvement (CQI)

19. Implementation/Training • Survey the landscape • Identify individual staff levels of expertise/interest/commitment • Introduction of tools, resources, & referrals

20. Mentoring/Consultation • Case centered - use individual cases to teach new tools and expand provider’s skills • Consultee/mentee centered – ‘hone’ provider skills and expand referral networks

21. Surveillance/Support • Monitor system progress • Updates – tools, new guidelines, mandates, web-sites, etc., etc.

22. Continuous Quality Improvement • Monitor and ‘grade’ the process • Offer feedback - include community and practice specific outcomes for children • Offer incentives for continued success

23. 2006-2007 Outputs • 773 children received secondary level screening by Developmental Specialists • 50% were referred for additional assessments/treatments • 148 were enrolled in early intervention through CDSA/WCPSS (does not include private speech providers) • >2500 consultations to providers in medical offices

24. Wake County Child Health Report Card 2007 • Number of children (age 0-3) enrolled in Early Intervention services to reduce effects of developmental delay, emotional disturbance and/or chronic illness- *2002-03 593 children *2005-06 1,255 children 111.6% change

25. PDSP - Lessons learned about working with primary care practices Primary care practices – both public and private – can effectively & efficiently do screening into their practice routines. This furthers universal, community-wide screening for early intervention to meet children’s developmental needs • Practices welcome assistance to provide quality care IF it can be integrated into their individual office setting.

26. PDSP - Lessons learned about working with primary care practices Flexibility in tailoring implementation & training is key in making sure practices own the process of developmental surveillance.

27. PDSP - Lessons learned about working with primary care practices Assigning a developmental Specialist to each practice is essential in establishing a relationship that allows for CQI monitoring, timely sharing of new information of community resources, and about the field of child development in general.

28. From Neurons to Neighborhoods: The science of early childhood development “The charge to society is to blend the skepticism of a scientist, the passion of an advocate, the pragmatism of a policy maker, the creativity of a practitioner, and the devotion of a parent – and to use existing knowledge to ensure both a decent quality of life for all of our children and a productive future for the nation.”

29. REFERENCES Principles of educational outreach (‘academic detailing’) to improve clinical decision making. Soumerai and Avorn, JAMA 1990; 263: 549-556. www.dbpeds.org – developmental screening tools, changing practice patterns, developmental surveillance tutorial

31. “I will always remember toddlerhood as the beginning of the stage of not knowing. It’s a stage that, nineteen years later, still hasn’t come to an end and probably never will.” A Special Education: One family’s journey through the maze of learning disabilities Dana Buchman

32. “Imagine being defined by what you’re worst at-bing tone-deaf, always forgetting people’s names, having allergies. Doesn’t seem very fair, does it?” A Special Education: One family’s journey through the maze of learning disabilities Dana Buchman