Data Monitoring

Health Information Data System (HIDS) User Information

DateScreening
Staff
MidwivesAudiologistsEducational
Audiologists

Early
Intervention
Total #
of Users
December 17, 202032828 1280
January 11, 2021378381295
February 5, 20214683813105
March 16, 202154934413114
April 13, 2021551335613122
May 11, 20215714371313134
June 18, 20215714391313136
July 19, 20216018391313143
Data reported by the Colorado Department of Public Health and Environment

Centers for Disease Control and Prevention (CDC) Data

Note: Colorado has not reported any data to the CDC since 2014. There is a request from CDC for an attempt to populate 2019 numbers and a concentrated push by the COEHDI Alliance to collect those numbers. Unfortunately, the information was not gathered in time in order to report to the CDC.

While we have preliminary numbers for 2019, we are not currently allowed to share them with stakeholders at this time. Whenever possible, any data collection and its progress is reported here in the interest of complete transparency and stakeholder accountability. COEHDI is currently supporting the push to collect 2020 data to report to the CDC on a timely basis.

Summary of Colorado’s 1-3-6 Benchmarks

The national early hearing detection and intervention (EHDI) 1-3-6 Benchmarks refers to the systemwide goal of:

  • Screening by 1 month of age;
  • Diagnosis/identification by 3 months of age; and
  • Enrollment in early intervention by 6 months of age.

It is an important parameter in measuring the success of a state’s system in viewing how well it is meeting national benchmarks. The goal is eventually to get to a 1-2-3 Benchmark (screening by 1 month of age, diagnosis by 2 months of age, and enrollment in early intervention by 3 months of age).

Due to this, we will ensure to be as transparent as possible in sharing the data we have at hand related to Colorado’s progress in this area. All data is collected by the Centers of Disease Control and Prevention (CDC) based on data reported to them by individual states and territories.

Colorado’s last report to the CDC was in 2014. There was an attempt to report data for 2019 by the new grant holders (COEHDI), however, the data is incomplete.

There are a variety of systematic barriers and legislation in place that have prevented the reporting of data. To date, Colorado is the only state nationwide that is not reporting data. This shortfall is a serious systematic gap and one that COEHDI stakeholders are acutely aware of and gravely concerned about.

Below, we will explain the information we have, the challenges and opportunities with collecting data, and the progress that has been made to address this systematic gap. Our goal is to present you all the facts at hand so that you may join us in our efforts to once again join the other 49 states and 17 territories in reporting data to the CDC so that we may adequately monitor Colorado’s benchmarks against other states.


Screening

Screening is important because the earlier we can identify a baby as being deaf or hard of hearing, the sooner we can provide support to the child and their families to support language and learning outcomes and ensure the child meets their developmental milestones. The goal is to have all babies screened prior to 1 month of age.

All of Colorado’s 54 birth facilities provide Newborn Hearing Screening. All screening results are reported to the Colorado Department of Public Health and Environment (CDPHE) on the electronic birth certificate. CDPHE only tracks babies born in Colorado. Here is where it gets tricky:

  • Not all babies are born in Colorado hospitals (some are born at home)
  • For those babies born at home, not all midwives have hearing screening equipment
  • Also, for those babies born at home, not all families follow up with screening
  • Some babies are born on federal military bases and not counted under Colorado’s statistics
  • Some babies are born out of state and move to Colorado. They are not counted because they aren’t born in Colorado
  • If an infant has a failed screen, CDPHE will send a letter informing them of the failed screen
  • CDPHE does not follow up with families regarding failed screens to ensure further audiological evaluations are conducted
  • HIPAA rules prevent access to and sharing of information without explicit consent
YearTotal Live Births

Total Screened
Total Screened Before 1 mos.
201466,396 65,06863,695 (97.9%)
201365,53664,19562,696 (97.7%)
201265,64864,30163,021 (98%)
201165,51464,06662,922 (98.2%)
201067,65766,40965,544 (98.7%)
200969,80168,24967,407 (98.8%)
200870,52970,08668,406 (97.6%)
200771,22969,974unknown
200671,08469,646unknown
Data in this table as well as below tables were all obtained from the CDC Annual Data from EHDI Programs

Diagnosis/Identification

If a newborn hearing screening result indicates a “fail” or a “refer with explanation” – follow up testing is needed. Sometimes the follow-up testing indicates typical hearing levels and no cause for concern. At other times, it identifies an infant as being deaf or hard of hearing.

Again, the goal is to have all deaf or hard of hearing babies diagnosed/identified by 3 months of age. The earlier they are identified, the sooner they can receive services to support language and learning outcomes.

This area is the most difficult to engage with in the system just due to the sheer size of the system, the number of people involved, reaching out to families to ensure they follow-up with any failed or missing screens, and ensuring that the appropriate referrals to professionals are made.

This phenomenon is known in the field as “loss-to-follow-up or loss-to-documentation (LFU/LTD).”

There are a few factors that make things difficult and LFU/LTD more common:

  • Due to HIPAA regulations, data cannot be shared without explicit permission/referrals
  • Families may not realize the importance of following up with missing or failed hearing screens
  • Sometimes families are given the wrong information regarding failed screens (e.g., oh your baby is fine, it’s just fluid in the ear)
  • Pediatricians may not get information about newborn hearing screening results
  • CDPHE only sends one letter to families regarding failed screens
  • EHDI (e.g., audiologists, early interventionists, etc.) personnel cannot get involved unless they are explicitly referred to a family
  • Babies cannot let caregivers know they are deaf or hard of hearing
  • Language and learning milestones look very similar for deaf and hard of hearing babies compared to babies with typical hearing levels for the first 6-8 months
  • Sometimes families may receive a diagnosis but it is not communicated with professionals and they “fall through the cracks” and do not receive the appropriate services they may need
  • Sometimes it becomes difficult to contact families for various reasons (moved, changed numbers, ignored calls, etc.)
YearTotal ScreenedTotal Not Passing
Initial Screening
Total Found to have
Typical Hearing
Total Found
to be DHH
Total DX
Before
3 mos.
Prevalence
(per 1,000
screened)
201466,396 (65,817**)212134 (63.2%)
201365,536
(65,004**)
202134 (66.3%)
201265,648
(65,188**)
164106 (64.6%)
201165,514
(65,052**)
164102 (62.2%)
201067,657
(66,346**)
121119 (98.6%)
200969,801136133 (91.1%)
200870,529116140 (83.3%)
2007
200669,646192601151.65
Data in this table as well as below tables were all obtained from the CDC Annual Data from EHDI Programs
YearTotal Live
Births
Total Screened
Total Screened
Before 1 mos.
Total DX
Total DX
Before 3 mos.
Enrolled in EI
Total Enrolled in EI
before 6 mos.
201466,396 (65,817**)65,06863,695 (97.9%)212134 (63.2%)5845 (77.6%)
201365,536
(65,004**)
64,19562,696 (97.7%)202134 (66.3%)6151 (83.6%)
201265,648
(65,188**)
64,30163,021 (98%)164106 (64.6%)5547 (85.5%)
201165,514
(65,052**)
64,06662,922 (98.2%)164102 (62.2%)7757 (74%)
201067,657
(66,346**)
66,40965,544 (98.7%)121119 (98.6%)8972 (80.9%)
200969,80168,24967,407 (98.8%)136133 (91.1%)11091 (82.7%)
200870,52970,08668,406 (97.6%)116140 (83.3%)
Data in this table as well as below tables were all obtained from the CDC Annual Data from EHDI Programs (** reflects a discrepancy between CDPHE** live births and CDC occurent births data based on vital records)

Hearing Screening (Colorado)

YearTotal BirthsTotal Screened% ScreenedLFU/LTD
2020
2019
2018
2017
2016
2015
201466,39665,06898.01,328
201365,53664,19598.01,341
2012
2011
2010
LFU/LTD reasons stated include infant died, parents/family declined, missed, unknown, non-resident, medical reason, or transferred/no documentation.

Diagnosis/Identification (Colorado)

YearTotal ScreenedTotal Not PassNo Hearing LossHearing LossPrevalence per 1,000 ScreenedLFU/LTD
2020
2019
2018
2017
2016
2015
201465,068754721402.2484
201364,195742741282.01,036
2012
2011
2010
LFU/LTD reasons stated include contacted but unresponsive, unable to contact, and unknown.

Early Intervention (Colorado)

YearTotal DHHTotal Enrolled in EITotal Enrolled in Part CTotal Enrolled in Non-Part CTotal Receiving Only Monitoring ServicesLFU/LTD
2020
2019
2018
2017
2016
2015
2014140585802449
201312861610N/AN/A
2012
2011
2010
LFU/LTD reasons stated include includes contacted but unresponsive, unable to contact, and unknown.