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Using Birth Defects Registries to Refer Children to Services

Using Birth Defects Registries to Refer Children to Services. Colorado’s Experience April Montgomery, MHA. Colorado Responds to Children with Special Needs (CRCSN). The Birth Defects Monitoring and Prevention Program. Preventing Secondary Disabilities. One of CRCSN’s purposes is:

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Using Birth Defects Registries to Refer Children to Services

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  1. Using Birth Defects Registries to Refer Children to Services Colorado’s Experience April Montgomery, MHA

  2. Colorado Responds to Children with Special Needs (CRCSN) The Birth Defects Monitoring and Prevention Program

  3. Preventing Secondary Disabilities One of CRCSN’s purposes is: “to help prevent secondary disabilities by connecting children and families with early intervention services in their home communities”

  4. Elements of a Referral System • Statutory and regulatory authority • Conditions to be referred • Resources • Evaluation • Marketing

  5. Statutory and Regulatory Authority Colorado’s birth defect registry has Mandated reporting Access to medical records Confidentiality and privacy Information sharing among public health agencies

  6. Case Definition • Resident of Colorado • Age to 3 years (may be diagnosed prenatally) • Diagnosis of a birth defect, developmental disability, or risk factor for developmental delay

  7. Conditions to be Referred • Few or many • Timeliness

  8. Eligibility Criteria for CRCSN • Established medical diagnoses • Medical risk factors for developmental delay • Environmental (maternal) risk factors

  9. CRCSN Referral Program • Excludes • Isolated minor conditions • Lethal conditions • Others selected by panel of experts and local agencies • Not all communities accept all referrals

  10. CRCSN Referral Program • Approximately 1600 children are included in CRCSN’s referral program annually • 60 out of 63 counties currently use CRCSN as a way to identify at-risk children in their communities

  11. CRCSN Referral Program • CRCSN notifies local agencies (Public Health and Part C) about families in their community • Each local agency decides which cases to contact depending upon their resources • Agencies are encouraged to make home visits

  12. CRCSN Referral Program • CRCSN is completely confidential • Referrals to non-public health agencies require consent from parents • Children names given to providers only with written permission • Parents encouraged to access services themselves

  13. Notifications made monthly • One notification form for each child • Identifying and diagnostic information • Agency completes evaluation and tracking questions for each child • Form returned to CRCSN

  14. Resources • Funding, funding, funding • Organizational structure and culture • Compatibility of data bases • Available services, resources and staff • Technical assistance

  15. CRCSN Referral Program Organizational Structure • Colorado Department of Public Health and Environment • Division of Disease Control and Environmental Epidemiology • Birth Defects Monitoring and Prevention Program

  16. Organizational Culture Data heads vs service providers Turf wars Ownership of clients Scare resource mentality

  17. Available Services and Resources • Referral and outreach are sparsely funded • State • Local • Unevenly distributed and categorical • Local staff expertise and skill vary

  18. Evaluation • Tracking • Referrals • Outcomes • Evaluation KISS

  19. CRCSN Referral Program Notification Form provides tracking and evaluation • Already known to agency • Contacted • How • Why not • Referred to services • Which services • Need for developmental services

  20. CRCSN Referral Program In 1999, 1550 children were referred to 60 counties • 40% were already known to the local agencies

  21. CRCSN Referral Program Of the 1550 children referred in 1999 • 27% were contacted by the local agencies • 36% of those contacted were referred to services • 33% of those contacted were judged to need developmental services

  22. CRCSN Referral Program • Of those NOT contacted • 29% were already in services • 44% could not be contacted • 5% moved • 2% agency did not attempt to contact • 20% other N=1175

  23. CRCSN Referral Program • Of those CONTACTED • 33 % were judged to need developmental services • 10% were already in developmental services • 37% had no need for developmental services N=422

  24. CRCNS Referral Program Telephone Survey of Families 68 % learned about services and resources 50% were helped by talking to local staff 31% received services as a result N=157

  25. CRCSN Telephone Survey “We have become good friends. I can go to her and ask her any questions I have.” Parent quote

  26. CRCSN Telephone Survey “We were able to sign up for physical therapy training class. All activities have involved us both, and I’m very grateful.” Parent quote

  27. CRCSN Telephone Survey “Gave information about the disability that my child has, very helpful talking to this person for my family” Parent quote

  28. CRCSN Telephone Survey “Helped us get connected with a dietician” Parent quote

  29. Marketing • Legislature • Other agencies and programs • Part C • Early intervention • Public health • Professionals and health care workers • Families • March of Dimes

  30. Conclusion • Birth defects surveillance systems can be valuable in connecting children and their families to services and resources in their communities.

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