2013 Data Training Sessions Training for CCS HRIF Program Web-Based Reporting System

1. California Children’s Services (CCS) & California Perinatal Quality Care Collaborative (CPQCC)High Risk Infant Follow-Up (HRIF) Quality of Care Initiative (QCI) 2013 Data Training Sessions Training for CCS HRIF Program Web-Based Reporting System Erika Gray, BA HRIF-QCI Project Manager CPQCC

2. CCS HRIF Program

3. Brief Background • 1979 CCS Standards for “Tertiary” NICUs were developed addressed CCS HRIF examinations. “CCS may pay for follow-up examination of high risk NICU graduates even though a CCS eligible condition does not exist“. • July 1, 2006 restructured CCS HRIF Program went into effect Core Diagnostic Services • Comprehensive History & Physical Exam with Neurologic Assessment • Developmental Assessment • Family Psychosocial Assessment • Hearing Assessment • Ophthalmologic Assessment • Coordinator Services

4. CCS & CPQCC designed the High Risk Infant Follow-up Quality Care Initiative (HRIF-QCI) Reporting System to: • Identify quality improvement opportunities for NICUs in the reduction of long term morbidity • Allow HRIF programs to compare their activities with all sites throughout the state • Allow the state to assess site-specific successes • Support real-time case management

5. Reporting Requirements Reference: CCS Program Letter (PL): 01-0611 • CCS-approved HRIF Programs are required to complete and submit reports to CPQCC using the web-based HRIF-QCI Reporting System for infants and children enrolled in a CCS-approved HRIF Program as of January 1, 2009, and thereafter. • CCS-approved NICUs are responsible for ensuring that all high-risk eligible infants discharge from the NICU are referred to their CCS-approved HRIF Program or have a written agreement for the provision of these services by another CCS-approved HRIF Program.

6. https://www.ccshrif.org/download.html

7. CCS HRIF Program Medical Eligibility Criteria Data should be collected on infants/children under three years of age who meet California Children’s Services (CCS) HRIF medical eligibility criteria and who met CCS medical eligibility criteria for Neonatal Intensive Care Unit (NICU) care OR had a CCS eligible medical condition at some time during their stay in a CCS-approved NICU, even if they were never a CCS client. Infants are medically eligible for the HRIF Program when the infant: Had a CCS eligible medical condition in a CCS-approved NICU, regardless of length of stay, (as per California Code of Regulations, Title 22, Section 41800 through 41872, CCS Medical Eligibility Regulations). Met CCS medical eligible criteria for NICU care, in a CCS-approved NICU, regardless of length of stay, (as per Number Letter 05-0502, Medical Eligibility in a CCS-approved NICU). OR AND MET ONE OF THE FOLLOWING Birth weight > 1500 grams and the gestational age at birth ≥ 32 weeks and one of the following criteria was met during the NICU stay: Birth weight ≤ 1500 grams or the gestational age at birth < 32 weeks. OR Cardiorespiratory depression at birth (defined as pH less than 7.0 on an umbilical blood sample or a blood gas obtained within one hour of life) or an Apgar score of less than or equal to three at five minutes. A persistently and severely unstable infant manifested by prolonged hypoxia, acidemia, hypoglycemia and/or hypotension requiring pressor support. Persistent apnea which required medication (e.g. caffeine) for the treatment of apnea at discharge. Required oxygen for more than 28 days of hospital stay and had radiographic finding consistent with chronic lung disease (CLD). Infants placed on extracorporeal membrane oxygenation (ECMO). Infants who received inhaled nitric oxide greater than four hours for persistent pulmonary hypertension of the newborn (PPHN). History of documented seizure activity. Evidence of intracranial pathology, including but not limited to, intracranial hemorrhage (grade II or worse), periventricular leukomalacia (PVL), cerebral thrombosis, cerebral infarction, developmental central nervous system (CNS) abnormality or “other CNS problems associated with adverse neurologic outcome”. Other problems that could result in neurologic abnormalities (e.g., history of CNS infection, documented sepsis, bilirubin in excess of usual exchange transfusion level, cardiovascular in stability, hypoxic ischemic encephalopathy, et cetera. • HRIF Program Referral Process: • Communication is between the CCS-approved NICU and HRIF Program. • The discharging/referring NICU/Hospital will refer eligible infants to the HRIF Program at the time of discharge to home, and complete the “Referral/Registration Form” via the web-based HRIF-QCI Reporting System. • The discharging/referring NICU/Hospital or HRIF Program will submit a Service Authorization Request (SAR) to local CCS Office. (Service Code Group [SCG] 06, should be requested). http://www.dhcs.ca.gov/ • services/ccs/cmsnet/Pages/SARTools.aspx • The discharging/referring NICU/Hospital will send a copy of the Discharge Summary to the HRIF Program. Medical eligibility for the HRIF Program is determined by the County CCS Program or Regional Office staff. The CCS Program is also required to determine residential eligibility. As the HRIF Program is a diagnostic service, there is no financial eligibility determination performed at the time of referral to CCS. However, insurance information shall be obtained by CCS. An infant or child is eligible for the HRIF Program from birth up to 3 years of age. Revised 9/1/2011

8. Reporting Requirements This web-based Reporting System was developed for CCS HRIF Program medically eligible infants, regardless of insurance status or CPQCC eligibility.

9. HRIF Quality of Care Initiative

10. Committees & Work Groups Executive Committee – meets quarterly and provides expertise and guidance Data Advisory Abstractor Work Group – meets annual to review data collection and provides recommendations Steering Committee – ad hoc group that provides specific expertise Ad hoc Work Groups - NICU Report; Quality Improvement; Medical Eligibility Criteria and Cerebral Palsy

11. 5 Major Outcomes • Standardize California HRIF Programs • Identify Quality Improvement Issues for NICUs • Early Identification: Infants Who Would Benefit From HRIF Program Services • Serve as a Surveillance Tool: Monitor NICU Medical Risk Factors • Case Management Profile: Manage Patient Resources and Monitor Infant’s Actual Service Profile

12. Reporting System Users • 69/115 (57%) CCS NICUs have a HRIF Program • 67/69 (97%) HRIF Programs reporting online • 19/20 Regional • 43/44 Community • 2/2 Intermediate • 17/46 (37%) referring CCS NICUs reporting online • 14/31 Community • 3/15 Intermediate

13. Reporting Submissions

14. Reporting Form Summary

15. Referral/Registration Form It is the responsibility of the discharging to home California Children’s Services (CCS) Neonatal Intensive Care Unit (NICU)/Hospital OR the last CCS NICU/Hospital providing care to make the referral to the High Risk Infant Follow-up (HRIF) Program. Upon referring an infant to the High Risk Infant Follow-up (HRIF) Program, a “Referral/Registration Form” is completed (except HRIF I.D. Number) by the discharge/referring NICU/Hospital at time of discharge to home.

16. HRIF Program Referral Process: Communication is between the CCS-approved NICU and HRIF Program. The discharging/referring NICU / Hospital will refer eligible infants to the HRIF Program at time of discharge to home, and complete the “Referral/Registration Form” via the web-based HRIF-QCI Reporting System. The discharging/referring NICU / Hospital or HRIF Program will submit a Service Authorization Request (SAR) to the Local CCS Office for HRIF services. (Service Code Group [SCG] 06, should be requested). http://www.dhcs.ca.gov/services/ccs/cmsnet/Pages/SARTools.aspx The discharging/referring NICU / Hospital will send a copy of the Discharge Summary to the HRIF Program. The HRIF Program will accept the infant’s case and all applicable information will be carried forward to the “Standard Visit Form” as appropriate in order to decrease entering data that is already in the system.

17. Standard Visit Form The HRIF Program has three core visits that take place during the following time periods: Visit #1 (4-8 months), Visit #2 (12-16 months) and Visit #3 (18-36 months). During the third and final core visit (18-36 months) a developmental test, such as a Bayley III Scales of Infant and Toddler Development, must be performed and reported. It is highly recommended that an Autism Spectrum Screening tool such as the MCHAT be performed between 16-30 months of age. Incomplete Standard Visits If you cannot obtain a neurologic or developmental assessment during the core visit, schedule a return visit for the infant to complete the assessment(s) and indicate the reason why the assessment was not performed. When the infant returns the missing neurologic or developmental assessment data can be entered on the incomplete “Standard Visit Form.” The date of the return visit should be entered into the “Date Performed” field(s).

18. Additional Visit Form If an infant requires additional visits for further assessment, an “Additional Visit Form” must be completed. Additional visits may occur before, between and/or after the recommended time frames for Standard Visits. This form only captures the date, reason (Social Risk, Case Management, Concerns with Neuro/Developmental Course or Other) and disposition for the additional visit.

19. Client Not Seen/Discharge Form Used for the following 5 case scenarios: Infant referred to your HRIF Program, but your staff was unable to contact the infant’s parent (primary caregiver) to establish an initial core visit. No Show: parent (primary caregiver) rescheduled (less than 24 hours) of a scheduled appointment or did not come to a scheduled core visit appointment. Infant eligible for HRIF Program, but parent (primary caregiver) declines service. Infant expired prior to core visit, family relocated, insurance denial, etc. Infant transferred/referred to another HRIF Program for follow-up services. This form captures only the date, category, reason and disposition for the client not seen visit.

20. 2013 Release Reporting System Improvements & Reports

21. REFERRAL REGISTRATION FORM “Unable to Complete Form”check box – online only ShouldONLY be used for the following (3) case scenarios: Infant expired prior initial core visit - disposition: Closed Parents refused follow-up services – disposition: Closed Lost to follow (unable to contact the family after multiple attempts) – disposition: Closed NOTE: Complete a “Client Not Seen/Discharge Form” to capture the reason why the Referral/Registration Form will be incomplete. Reporting Forms

22. REFERRAL REGISTRATION FORM 1. CPQCC Reference Number NOTE: Enter“00000”as the CPQCC Network Patient ID Number, if your not sure if the infant met the CPQCC NICU Eligibility Criteria or the CPQCC data contact person is backlogged and, therefore has not assigneda CPQCC Network Patient ID Number for the infant. Use the “CPQCC Reference Number Report” to replace assigned CPQCC Network Patient ID Numbers. 2. Date of Discharge to Home (*Required Field) Enter the date when the infant/child was discharged home (Foster Care or Medical Foster Care) from your hospital without ever transferring to another hospital using MM/DD/YYYY. NOTE: Discharge to home occurs when an infant goes home from your hospital, not the NICU.

23. STANDARD VISIT FORM 3. Core Visit (*Required Field) The HRIF Program has three core visits that take place during the following recommended time periods: Visit #1 (4-8 months), Visit #2 (12-16 months) and Visit #3 (18-36 months). Enter the appropriate Core Visit by selecting “1”, “2”, or “3”. NOTE: Core Visit #1 is the initial first visit to the follow-up program, even if the patient is older than 8 months corrected age. 4. Hospitalizations Since Last Visit If this is the infant/child’s first core visit, indicate if the infant/child was hospitalized since NICU discharge and prior to the first HRIF core visit. If this is the second or third Core visit, indicate if the infant/child was hospitalized between HRIF Core assessment visits. NOTE: A hospitalization is defined as admission and at least an overnight stay in the hospital. This should be distinguished from a long emergency room visit or urgent care outpatient clinic visit that may or may not have been over night during interviews with the family.

24. STANDARD VISIT FORM 5. Medications Since Last Visit New item “Oral Steroids” NOTE: The purpose of this question is to capture the significant and/or consistent medications that the child is taking or has taken during the intervals described. Occasional use of acetaminophen, ibuprofen, or over the counter cough or cold medications should not be captured. 6. Equipment Since Last Visit New item “Helmet” 7. Does the Child Have Visual Impairment / Hearing Loss? - sections Added “per specialized clinical exam or parent report”to definition.

25. STANDARD VISIT FORM 8. Neurologic Assessment New item “C. Is There Scissoring of the Leg on Vertical Suspension? If “Abnormal”or“Suspect” was checked for neurologic assessment exam, indicate if there is persistent “scissoring” (crossing of the legs) when the infant/child is vertically suspended (supported under arms). Select “No”, if there is no scissoring of the legs on vertical suspension present. Select “Yes”, if there is scissoring of the legs on vertical suspension present. 9. Medical Therapy Unit (MTU) –New Section The Medical Therapy Program (MTP) is a special program withinCalifornia Children's Services that provides physical therapy (PT), occupational therapy (OT) and medical therapy conference (MTC) services for children who have handicapping conditions, generally due to neurological or musculoskeletal disorders. Website: http://www.dhcs.ca.gov/services/ccs/Pages/MTP.aspx Is the Child Receiving Services Through CCS Medical Therapy Program (MTP)? Check all instances (options) that apply at the time of core visit. Valid options are “No”,“Yes”,“Referred”, “Referral Failure”, “Parent Refused Service”,“Determined Ineligible by MTP” or“Unknown”.

26. STANDARD VISIT FORM 10. Child Protective Services (CPS) Added: “Is a Child Protective Services (CPS) Case Currently Opened?” Select one option that applies at the time of core visit. Select “No” Select“Yes”,if CPS referral is pending or currently opened Select “Referred at Time of Visit”

27. STANDARD VISIT FORM 11. Disposition (*Required Field)–Redefined Select only one option that applies at the time of core visit. • Select “Scheduled to Return”,the infant/child will be scheduled for another follow-up core visit at the HRIF Program. • Select “Will Be Followed by Another CCS HRIF Program”when the infant/child is transferred and receiving follow-up care from another CCS HRIF Program. • Select “Discharged Graduated”,the infant/child has completed the three HRIF Program follow-up core visits and has reached the 3-year age limit. No further data will be submitted to CMS/CCS. • Select “Discharged, Will Be Followed Elsewhere”,when the infant/child will be receiving follow-up care from a NON CCS HRIF Program or from out of state. No further data will be submitted to CMS/CCS

28. STANDARD VISIT FORM 11. Disposition (*Required Field)–Redefined continue • Select “Discharged, Closed Out of Program”,the HRIF Program has determined that the infant/child is no longer needs to be followed within a CCS HRIF Program. No further data will be submitted to CMS/CCS. • Select “Discharged, Family Withdrew Prior To Completion”,the infant/child’s primary caregiver(s) decides not to return or continue follow-up core visits at the CCS HRIF Program, before the final (3rd) visit or the child’s third birthday. No further data will be submitted to CMS/CCS. • Select “Discharged, Completed HRIF Core Visits, Referred for Additional Resources”, the child has completed the three HRIF Program follow-up core visits, has reached the 3-year age limit and referred for additional resources. No further data will be submitted to CMS/CCS.

29. ADDITIONAL VISIT FORM 13. Disposition (*Required Field) –Redefined Select only one option that applies at the time of core visit. • Select “Scheduled to Return”,the infant/child will be scheduled for another follow-up core visit at the HRIF Program. • Select “Will Be Followed by Another CCS HRIF Program”when the infant/child is transferred and receiving follow-up care from another CCS HRIF Program. • Select “Discharged Graduated”,the infant/child has completed the three HRIF Program follow-up core visits and has reached the 3-year age limit. No further data will be submitted to CMS/CCS. • Select “Discharged, Will Be Followed Elsewhere”,when the infant/child will be receiving follow-up care from a NON CCS HRIF Program or from out of state. No further data will be submitted to CMS/CCS

30. ADDITIONAL VISIT FORM 13. Disposition (*Required Field) –Redefined continue • Select “Discharged, Closed Out of Program”,the HRIF Program has determined that the infant/child is no longer needs to be followed within a CCS HRIF Program. No further data will be submitted to CMS/CCS. • Select “Discharged, Family Withdrew Prior To Completion”,the infant/child’s primary caregiver(s) decides not to return or continue follow-up core visits at the CCS HRIF Program, before the final (3rd) visit or the child’s third birthday. No further data will be submitted to CMS/CCS. • Select “Discharged, Completed HRIF Core Visits, Referred for Additional Resources”, the child has completed the three HRIF Program follow-up core visits, has reached the 3-year age limit and referred for additional resources. No further data will be submitted to CMS/CCS.

31. CLIENT NOT SEEN/DISCHARGE FORM 14. Category (*Required Field)–Redefined Select “Discharged”,if the infant/child will be referred to another CCS HRIF Program or other program (Non-CCS HRIF Program) for follow-up services. 15. Disposition (*Required Field)–Redefined • Select “Scheduled Appointment”,if the infant/child has been scheduled for a return follow-up core visit. • Select “Will Schedule Appointment”,if the infant/child will be scheduled for a return follow-up core visit. • Select “Will Be Followed by Another CCS HRIF Program”when the infant/child is transferred and receiving follow-up care from another CCS HRIF Program.

32. CLIENT NOT SEEN/DISCHARGE FORM 15. Disposition (*Required Field) –Redefined continue • Select “Discharged, Will Be Followed Elsewhere”,when the infant/child will be receiving follow-up care from a NON CCS HRIF Program or from out of state. No further data will be submitted to CMS/CCS • Select “Discharged, Closed Out of Program”,the HRIF Program has determined that the infant/child is no longer needs to be followed within a CCS HRIF Program. No further data will be submitted to CMS/CCS.

33. Data Quality Audit Reports • PART 1 – Referral/Registration Missing Data (RMD) • PART 2 – Duplicate Records • PART 3 – Patient Case History (RCH)

34. PART 1 - "Referral/Registration Missing Data (RMD) Report", this report only identifies records (infants born in 2009 and 2010) with missing data items in the HRIF Program dataset (birth mother's DOB, caregiver information, missing CPQCC ID numbers, language, race and ethnicity).  PART 2 - "Duplicate Records", an email was sent to all HRIF Program Coordinators October 2nd - 8th, identifying duplicate records found in the Reporting System. Deadline to removal duplicate records is November 5, 2012. PART 3 - "Record Case History (RCH) Report", this report displays the dates and dispositions for infants born in 2009 and 2010, including attached forms (Standard Visits, Client Not Seen/Discharges and Additional Visits) submitted in the HRIF Program. The purpose of this report is to help HRIF Programs track and close case records. *Use these reports as a tool. Please login the web-based HRIF-QCI Reporting System to update any records by January 13, 2013.

35. Duplicate records across programs Programs registering infants who expired in the NICU Programs registering infants who haven’t been discharge to home (transfer date is entered as discharge to home date) Missing CPQCC ID #’s (difficult to obtain from CPQCC Contacts) Incorrect OSHPD codes used for CPQCC Reference Number Mother’s identified as primary caregiver, but Mother’s DOB is unknown NON CCS hospitals are be selected as “Referring CCS NICUs” Quality Audit Findings

36. No communication between NICU CPQCC Data Contacts and Discharge Planner/HRIF Program with CPQCC Network Patient ID#’s CCS NICUs not referring eligible infants via the web-based Reporting System Transferring data in a timely manner (NICU to HRIF Program) Referral/Registration Forms not submitted at the time of discharge to home HRIF Programs ONLY enrolling infants who show at the initial core visit (missing infants who may have qualified at time of discharge) Data Quality Gaps

37. Reporting System Improvements, Reports & Tools • Universal Duplicate Record Feature • Patient Data Self Audit Instrument Report • HRIF Summary Report • NICU Summary Report • CPQCC Reference Number Tool • Parent Questionnaire Tool • Tracker Tool – available Feb 2013

38. Complete the Reporting System User Contact Form and fax to 650-721-5751, Attention: HRIF-QCI Support Staff.Available on the www.ccshrif.org Homepage. USER ACCESS ACCOUNTS (contacts can have multiple accounts): Data User: CCS-approved HRIF Program staff submits all data forms (Referral/Registration, Standard Visit, Additional Visit and Client Not Seen/Discharge) for infants/children receiving follow-up services from their own HRIF Program. Data Users can generate HRIF Program and Patient Summary reports. Referral User: CCS-approved NICU and/or HRIF Program staff refers HRIF eligible infants to a CCS HRIF Program and only has access to submit the “Referral/Registration Form”. Currently no access to generate/view reports. NICU User: CCS-approved NICU staff (read-only access) generate/view NICU reports. System Access *User Interface Access Accounts Overview – available for download: https://www.ccshrif.org/download.html

39. Universal Duplicate Record Feature Identifies existing records across the entire HRIF-QCI database that have the same “Date of Birth”, “Gender”, “Singleton/Multiple”status, “Birth Hospital”, and “Mother’s Date of Birth”.

40. Click the HRIF ID # to review record Contact the HRIF Program who registered the patient Email support@ccshrif.org request to transfer the record

41. Patient Data Quality Self-Audit InstrumentLocated on the “Case History” screen

42. HRIF Summary Reports Allows HRIF Programs to view HRIF follow-up outcome data and compare to all HRIF Programs. Users are able to view their own HRIF Program or “All”, and filter based on “Discharge NICU”, “Infant’s Birth Year”, “Infant’s Birth Weight”, “Report Name: Referral/Registration, Standard Visits (1, 2, or 3) or by age range” and “Report Section Name”. Located under the “Report” tab

43. HRIF Summary(Registration)

44. HRIF Summary (Standard Visit #1) Report

45. NICU Summary Reports Allows CCS NICUs to view HRIF follow-up outcome data for infants cared for in their NICU and compare to all CCS NICUs. Users are able to view their own NICU hospital or “All”, and filter based on “Infant’s Birth Year”, “Infant’s Birth Weight”, “Inborn/Outborn”, and “Standard Visit (1, 2, or 3) or Adjusted Age Range” at follow up. NOTE: In order to view this report, you must have “NICU User” access. Located under the “Report” tab

46. CPQCC Reference Number Report Purpose to update/enter multiple CPQCC ID Numbers and verify data entry.

47. Parent Questionnaire Form To collect social-demographic information about High Risk Infant Follow-up (HRIF) patients and their families to determine the specific needs of this patient population and develop better standards of care for California HRIF Programs.

48. HRIF Tracker Help programs schedule and track patient records. Coming Soon Early 2013

49. Best Practice/Resources • Transfer Patient Records Process • Website: Homepage • Website: Download Page • HRIF-QCI Manual: Web-based Reporting System Review • CPQCC & HRIF-QCI Directory • CPQCC Newsletter

50. Contact the CCS HRIF Program Coordinator where the patient will be transferred for follow-up care, to inform them of the patient. Submit a “Client Not Seen/Discharge Form”, before requesting to transfer the patient’s record: Category:  "Discharged” Reason: "Infant Referred to Another HRIF Program" Disposition: "Will be Followed Elsewhere"  Email HRIF-QCI Reporting System Support (support@ccshrif.org)to request the record transfer to another CCS HRIF Program. Include in the email request the patient’s “HRIF ID Number”, “Date of Birth” and the “HRIF Program, where the patient will be transferred”. NOTE: Records are transferred every Friday; request received on Friday will be transferred the following week. Transfer Patient Records Process