Using Birth Defects Registries to Refer Children to Services

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Using Birth Defects Registries to Refer Children
to Services

• Colorados Experience
• April Montgomery, MHA

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Colorado Responds to Children with Special Needs
(CRCSN)

• The Birth Defects Monitoring and Prevention
  Program

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Preventing Secondary Disabilities

• One of CRCSNs purposes is
• to help prevent secondary disabilities by
  connecting children and families with early
  intervention services in their home communities

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Elements of a Referral System

• Statutory and regulatory authority
• Conditions to be referred
• Resources
• Evaluation
• Marketing

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Statutory and Regulatory Authority

• Colorados birth defect registry has
• Mandated reporting
• Access to medical records
• Confidentiality and privacy
• Information sharing among public health agencies

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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

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Conditions to be Referred

• Few or many
• Timeliness

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Eligibility Criteria for CRCSN

• Established medical diagnoses
• Medical risk factors for developmental delay
• Environmental (maternal) risk factors

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CRCSN Referral Program

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

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CRCSN Referral Program

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

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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

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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

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• 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

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Resources

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

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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

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

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

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Evaluation

• Tracking
• Referrals
• Outcomes
• Evaluation
• KISS

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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

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CRCSN Referral Program

• In 1999, 1550 children were referred to 60
  counties
• 40 were already known to the local agencies

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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

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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

N1175
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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

N422
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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

N157
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CRCSN Telephone Survey
We have become good friends. I can go to her
and ask her any questions I have. Parent quote
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CRCSN Telephone Survey
We were able to sign up for physical therapy
training class. All activities have involved us
both, and Im very grateful. Parent quote
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CRCSN Telephone Survey
Gave information about the disability that my
child has, very helpful talking to this person
for my family Parent quote
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CRCSN Telephone Survey
Helped us get connected with a dietician Pare
nt quote
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Marketing

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

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Conclusion

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