Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Outcomes, Colorado, 2014-2016 (ICPSR 37131)

Version Date: Sep 5, 2018 View help for published

Principal Investigator(s): View help for Principal Investigator(s)
Beth McManus, University of Colorado at Denver; Mary Khetani, University of Illinois at Chicago

https://doi.org/10.3886/ICPSR37131.v1

Version V1

Part C of the Individuals with Disabilities Education Act authorizes states, with the incentive of federal financial support, to create Early Intervention (EI) systems, which is a primary source of rehabilitation (e.g., physical, occupational, and speech therapy) services for infants and toddlers with, or at risk for, developmental delays. Having worked with two EI Colorado (EI-CO) programs that employed electronic documentation, the researchers sought to leverage their electronic administrative data in order to examine social disparities in EI service use, including specific rehabilitation services.

The dataset for this data archiving project was generated in collaboration with a large, urban EI program in Colorado, a community partner for an NIH/NCMRR R03 study. This academic-community research partnership provided researchers with access to an urban EI program's electronic administrative database; The researchers' goal was to make these data available for further EI research. Therefore, a database was created and a number of variables were derived that could be of importance to EI stakeholders when conducting clinical queries for quality improvement. Examples of derived variables include EI service use intensity (i.e., hours per month) for all EI services, as well as discipline-specific (e.g., physical or occupational therapy) service use. The researchers obtained permission from the partnering EI agency to archive their EI program data through this project.

The dataset included as part of this collection includes 2045 cases for 44 variables; demographic variables include: race, ethnicity, language, sex, age, and developmental condition type.

McManus, Beth, and Khetani, Mary. Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Outcomes, Colorado, 2014-2016. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2018-09-05. https://doi.org/10.3886/ICPSR37131.v1

Export Citation:

  • RIS (generic format for RefWorks, EndNote, etc.)
  • EndNote
United States Department of Health and Human Services. National Institutes of Health. National Center for Medical Rehabilitation Research (1R03HD084909-01A1)

Zip Code

Access to these data is restricted. Users interested in obtaining these data must complete a Restricted Data Use Agreement, specify the reason for the request, and obtain IRB approval or notice of exemption for their research.

Inter-university Consortium for Political and Social Research
2014-10 -- 2016-09
2014-10 -- 2016-09

Part C of the Individuals with Disabilities Act authorized (with the incentive of financial support) statewide early intervention (EI) systems for infants and toddlers with, or at risk for, developmental delays. There is critical need for robust research evidence about the adequacy of EI services relative to functional outcomes in order to improve EI service delivery. However, a major barrier to building this knowledge about the adequacy of EI services lies in the current state of EI documentation. Most EI-Colorado (EI-CO) programs have paper-based systems, and are at various stages of transitioning to electronic systems for surveillance and to capture care planning and service use activities. Therefore, Since 2014, the researchers worked with two EI-CO programs that employed electronic documentation. The researchers secured National Institutes of Health (NIH) funds to leverage their electronic administrative data, and examined social disparities in EI service use, including specific rehabilitation services.

The purpose of gathering these data was to describe children's diagnostic, social, and functional characteristics associated with access and use of core EI services. The majority of states are using the Child Outcomes Summary (COS) approach. COS scores are generated by consensus rating among members of the child's EI team after gathering multiple sources of information. COS scores represent estimates of the child's functional performance for the purposes of EI care plan development and outcomes monitoring within the EI program, and for federally-mandated outcomes reporting by the EI program on an annual basis. To the researchers' knowledge, routinely collected COS data have not yet been included in EI service use studies.

Early Intervention (EI) Service Use:

EI service use was described according to the number of core services (sum of discipline-specific services received), number of EI hours, and duration of EI service (in months). EI intensity, the number of all EI service hours per month, was calculated as total EI hours divided by total duration of EI service (in months). EI service use was also described by core discipline (i.e., Physical Therapy, Occupational Therapy, Speech Therapy, Psychology, or Developmental Intervention.) For each core discipline, the researchers estimated 1) "any" discipline-specific service and 2) discipline-specific service intensity. Children were categorized as receiving "any" discipline-specific service if they received at least one billable service from that discipline. Discipline-specific service intensity was calculated as the total service hours for each discipline, divided by the total duration of service.

Child Characteristics:

Child's race and ethnicity were categorized as White/Non-Hispanic, Black/Non-Hispanic, Hispanic, and other race/Non-Hispanic (including Asian, Pacific Island and children reporting more than one race). Age at EI referral was grouped into 12 months, 12-24 months, and 25-35 months. Child's sex was also included. Reason for EI eligibility was categorized according to the child's developmental condition type (diagnosed developmental condition versus developmental delay). Children were automatically deemed EI-eligible if they had a diagnosed developmental condition that typically resulted in developmental delay. These conditions were based upon federal legislation and additional diagnoses chosen by states. In the study state (Colorado), developmental delay is defined as performing at least 1 standard deviation below the mean on a standardized developmental evaluation administered by the EI team. The researchers included variables for primary language spoken at home and health insurance type.

Child Outcomes Summary (COS):

Child Outcomes Summary is currently used by most states and measures functional performance for the purposes of EI care plan development and outcomes monitoring. It has potential to be a marker for discipline-specific EI service need, as children whose COS scores reflect difficulty with functional domains (e.g., cognition) presumably would benefit from greater breadth and intensity of EI services. COS scores are related to 1) having positive social relationships, 2) acquiring and using knowledge and skills, and 3) taking appropriate action to meet needs. Each COS score is on a 7-point scale, from 1=Very Early Skills (i.e., child does not use any immediate foundational skills related to this outcome) to 7=All Skills Expected (i.e., there are no concerns about the child's function in this area) per the EI team consensus. Since the EI program did not mandate that COS be routinely collected on families enrolled during the study period, COS scores were recorded for 65 percent of EI-enrolled children.

Despite the strengths of using COS data, it's essential to understand and acknowledge its limitations. There is a concern for data collection bias and variability of information about the child that is available when generating the COS rating. For example, family assessment results captured parent perspectives about the child's functioning, but were not always available at the time of the COS rating. Moreover, there were multiple functional areas covered in each COS sub-scale (e.g, there are mobility items in the adaptive behavior domain), and COS items specify how a functional task is performed, which may not differentiate it from an age-normed developmental score. It is therefore likely that the required developmental assessment was weighted heavily compared to the family assessment, which was not completed by all families. As quality improvement initiatives continue to evolve, it will be important to determine best practices related to collecting relevant data for the COS process. It will also be important to determine its convergent and divergent validity and clinical utility.

The study sample was derived from electronic administrative data at a large, urban early intervention (EI) program which services approximately 1000 families annually (about 12 percent of all EI children in the state). Sample children 1) were discharged from the EI program between 10/1/2014 and 9/30/2016, and 2) had at least one billable EI service. These dates were chosen to coincide with the adoption of an expanded electronic data capture system by the EI program.

The study sample included 2,045 children and of those, 342 were discharged during the study period without receiving any services because the family could not be contacted. Of the 1,703 children who had at least one billable EI service, 1,681 received a core EI service. The remaining 22 chidlren only received EI care planning services. Child Outcomes Summary (COS) information was available for 65 percent (n=1,326 out of 2,045) of all children discharged during the study period and 70 percent (n=1,180 out of 1,681 of children who received a core EI service.

Cross-sectional

Children who were discharged from an urban early intervention (EI) program in Colorado between October 2014 and September 2016, and had at least one billable EI service.

Individual

Electronic administrative records from an early intervention (EI) program in Colorado.

administrative records data

  • Early Intervention (EI) Service Use: Variables include number of core services, number of EI hours, service use intensity, and duration of EI services in months.
  • Child Characteristics (demographics): Variables include child's race, ethnicity, age, sex, and developmental condition type.
  • Flag Variables: IFSP_FLAG is a flag variable to indicate children who received at least one EI service; COS_FLAG is a flag variable to indicate children who have complete Child Outcomes Summary (COS) data.

Scales included as part of this data collection relate to variables regarding entry and exit scores of EI children.

  • PSK: Positive Social Emotional Skills
  • AUK: Acquiring and Using Knowledge and Skills
  • TAAM: Taking Appropriate Action to Meet Needs

2018-09-05

2018-09-05 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:

  • Checked for undocumented or out-of-range codes.

Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.

  • The citation of this study may have changed due to the new version control system that has been implemented.
ADDEP logo

This study is maintained and distributed by Advancing Research on Disability.