Health Information Data System (HIDS) User Information
| Date | Screening Staff | Midwives | Audiologists | Educational Audiologists | Early Intervention | Total # of Users |
|---|---|---|---|---|---|---|
| December 17, 2020 | 32 | 8 | 28 | — | 12 | 80 |
| January 11, 2021 | 37 | 8 | 38 | — | 12 | 95 |
| February 5, 2021 | 46 | 8 | 38 | 13 | 105 | |
| March 16, 2021 | 54 | 9 | 34 | 4 | 13 | 114 |
| April 13, 2021 | 55 | 13 | 35 | 6 | 13 | 122 |
| May 11, 2021 | 57 | 14 | 37 | 13 | 13 | 134 |
| June 18, 2021 | 57 | 14 | 39 | 13 | 13 | 136 |
| July 19, 2021 | 60 | 18 | 39 | 13 | 13 | 143 |
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
| Year | Total Live Births | Total Screened | Total Screened Before 1 mos. |
|---|---|---|---|
| 2014 | 66,396 | 65,068 | 63,695 (97.9%) |
| 2013 | 65,536 | 64,195 | 62,696 (97.7%) |
| 2012 | 65,648 | 64,301 | 63,021 (98%) |
| 2011 | 65,514 | 64,066 | 62,922 (98.2%) |
| 2010 | 67,657 | 66,409 | 65,544 (98.7%) |
| 2009 | 69,801 | 68,249 | 67,407 (98.8%) |
| 2008 | 70,529 | 70,086 | 68,406 (97.6%) |
| 2007 | 71,229 | 69,974 | unknown |
| 2006 | 71,084 | 69,646 | unknown |
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.)
| Year | Total Screened | Total 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) |
|---|---|---|---|---|---|---|
| 2014 | 66,396 (65,817**) | 212 | 134 (63.2%) | |||
| 2013 | 65,536 (65,004**) | 202 | 134 (66.3%) | |||
| 2012 | 65,648 (65,188**) | 164 | 106 (64.6%) | |||
| 2011 | 65,514 (65,052**) | 164 | 102 (62.2%) | |||
| 2010 | 67,657 (66,346**) | 121 | 119 (98.6%) | |||
| 2009 | 69,801 | 136 | 133 (91.1%) | |||
| 2008 | 70,529 | 116 | 140 (83.3%) | |||
| 2007 | ||||||
| 2006 | 69,646 | 192 | 60 | 115 | 1.65 |
| Year | Total 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. |
|---|---|---|---|---|---|---|---|
| 2014 | 66,396 (65,817**) | 65,068 | 63,695 (97.9%) | 212 | 134 (63.2%) | 58 | 45 (77.6%) |
| 2013 | 65,536 (65,004**) | 64,195 | 62,696 (97.7%) | 202 | 134 (66.3%) | 61 | 51 (83.6%) |
| 2012 | 65,648 (65,188**) | 64,301 | 63,021 (98%) | 164 | 106 (64.6%) | 55 | 47 (85.5%) |
| 2011 | 65,514 (65,052**) | 64,066 | 62,922 (98.2%) | 164 | 102 (62.2%) | 77 | 57 (74%) |
| 2010 | 67,657 (66,346**) | 66,409 | 65,544 (98.7%) | 121 | 119 (98.6%) | 89 | 72 (80.9%) |
| 2009 | 69,801 | 68,249 | 67,407 (98.8%) | 136 | 133 (91.1%) | 110 | 91 (82.7%) |
| 2008 | 70,529 | 70,086 | 68,406 (97.6%) | 116 | 140 (83.3%) |
Hearing Screening (Colorado)
| Year | Total Births | Total Screened | % Screened | LFU/LTD |
|---|---|---|---|---|
| 2020 | ||||
| 2019 | ||||
| 2018 | ||||
| 2017 | ||||
| 2016 | ||||
| 2015 | ||||
| 2014 | 66,396 | 65,068 | 98.0 | 1,328 |
| 2013 | 65,536 | 64,195 | 98.0 | 1,341 |
| 2012 | ||||
| 2011 | ||||
| 2010 |
Diagnosis/Identification (Colorado)
| Year | Total Screened | Total Not Pass | No Hearing Loss | Hearing Loss | Prevalence per 1,000 Screened | LFU/LTD |
|---|---|---|---|---|---|---|
| 2020 | ||||||
| 2019 | ||||||
| 2018 | ||||||
| 2017 | ||||||
| 2016 | ||||||
| 2015 | ||||||
| 2014 | 65,068 | 754 | 72 | 140 | 2.2 | 484 |
| 2013 | 64,195 | 742 | 74 | 128 | 2.0 | 1,036 |
| 2012 | ||||||
| 2011 | ||||||
| 2010 |
Early Intervention (Colorado)
| Year | Total DHH | Total Enrolled in EI | Total Enrolled in Part C | Total Enrolled in Non-Part C | Total Receiving Only Monitoring Services | LFU/LTD |
|---|---|---|---|---|---|---|
| 2020 | ||||||
| 2019 | ||||||
| 2018 | ||||||
| 2017 | ||||||
| 2016 | ||||||
| 2015 | ||||||
| 2014 | 140 | 58 | 58 | 0 | 24 | 49 |
| 2013 | 128 | 61 | 61 | 0 | N/A | N/A |
| 2012 | ||||||
| 2011 | ||||||
| 2010 |