Frequently Asked Questions on Child Outcomes Data Collection

Purpose

1. What is the purpose of this study?

First, it is important to emphasize that child outcomes data are not being collected as part of a study. Rather, child outcomes data are being collected to meet federal reporting requirements for all states, established by the U.S. Department of Education Office of Special Education Programs (OSEP) pursuant to the IDEA improvement Act of 2004 (IDEA 2004). IDEA 2004 requires states to develop performance plans to evaluate the State's efforts to implement IDEA, and describe how the State will improve results for children with disabilities.

Under this federal requirement, the OSEP is requiring states to report on the percent of infants and toddlers with Individualized Family Service Plans (IFSPs) who demonstrate improvement, based on exit and entry assessments, in the areas of social emotional skills, acquisition and use of knowledge and skills, and use of appropriate behaviors to meet needs. OSEP permits states to collect and report these data on representative samples of children receiving early intervention services. Child outcome data are being collected to meet this federal data collection and reporting requirement.

Sampling

2. When should sampling of children to collect child outcomes begin?

Each year an email will be sent to county Early Intervention Officials and Managers. The email notification will include the number of children to be sampled and the start date for the sampling. Typically, the sampling will begin on July 1st of each year and should be continued until the number of children in the sample size count have been achieved.

3. Do I enter the first three eligible children into the Child Outcome sample or the first three children referred?

If your municipality's sample size is three children, the first three children referred to the Early Intervention Program (EIP) as of the start date for sampling should be entered into the Child Outcome sample.

4. A child included in the sample may be found ineligible at the first evaluation and then the case is reopened. Do we keep this child in the sample? Do we need to indicate this?

If the child is found to be ineligible at the first evaluation, the child is retained as part of the sample, but the Child Outcomes Summary Form (COSF) is not completed for the child, and no further data collection is necessary related to the child for that current child cohort sample. The EIP data systems (NYEIS or KIDS) will have a record that the child was included in the child sample for that specific year's cohort. The municipality also should document in the child's record that the child was included in the child outcomes cohort sample but was not found eligible for the EIP at that time.

If the child is re-referred to the EIP in the future, it is possible that the child will be selected for a second sample, but only if the child is re-referred to the EIP during a sampling timeframe established by the Department for future child cohorts.

5. Should a child be included in the county sample when the child was previously determined to be not eligible for EIP services and then returned for a supplemental speech evaluation?

See response to question four above.

6. Should children who enter the EIP over 30 months of age be included in the sample?

No. Children must have the opportunity to receive early intervention services for a minimum of six months in order to be included.

7. Should a child be included in the county sample when the child arrived from another county with an IFSP in place?

No. Entry data must be collected before a child begins to receive early intervention services, so a child who is referred from another county and who has been receiving early intervention services in another county should be excluded from the county's sample. Exit information should be collected for the child, and this should be coordinated with the county from which the child is transferring.

8. Should a child be included in the county sample when the child has already had an initial IFSP, moved to another county, returned and then re-referred for EI services?

No. As stated in the answer to question seven, entry data must be collected before a child begins to receive early intervention services, so a child who is referred from another county and who has been receiving early intervention services should be excluded from the current cohort sample.

9. Should a child be included in the county sample when the child's family refuses to have the Child Outcome Entry Summary Form completed?

OSEP has issued guidance to states that since child outcomes data are required for federal accountability for the Part C EIP and since it would not disclose personally identifiable information about the child, families cannot refuse to have their child's assessment data included in the aggregate report. Therefore, the parent cannot refuse to have the Child Outcome Summary Form (COSF) completed for their child. If the parent does not wish to participate in completion of the COSF, the service coordinator, Early Intervention Official/Designee (EIO/D), and evaluator(s) should either each complete the COSF independently and submit individual responses to the Bureau of Early Intervention at the New York State Department of Health (Department) or collaborate to complete and submit one COSF for the child.

It is important to indicate on the COSF who participated in and/or completed the COSF. It is important to be sure that parents understand that the information collected for and reported on the COSF will not in any way affect the child's eligibility for the EIP. The child's eligibility for the EIP is determined in accordance with Department standards and procedures on evaluation and eligibility and the State's eligibility criteria for the EIP, and is determined separately.

The COSF must be completed for all children included in child outcomes cohort samples who are determined eligible for the EIP and for whom an IFSP is developed.

10. The family refused an initial home visit. Should the child be included in the sample?

Any child referred to the municipality within the sampling timeframe, and entered into the EIP data system as a referral, is included in the sample up to the sample size designated for the municipality by the Department.

Municipalities are advised that to ensure the accuracy of data on children referred to the EIP, all children referred must be entered into the EIP data system (NYEIS or KIDS), regardless of the family's willingness to participate in an initial home visit or any other aspect of the EIP.

11. We need to let people in the field have information up front about the use of the forms some time before the IFSP, how do we do this?

For all children included in the municipality's sample, the municipality is responsible for notifying the child's initial service coordinator and the evaluator selected by the child's parents that the child is included in the sample.

Municipalities must establish procedures to accomplish this task. It is recommended that the municipality notify the initial service coordinator and evaluator in writing that the child is included in the sample.

Role of Evaluators

12. What is the purpose of the packet of information sent to by the NYS EIP evaluators?

The purpose of this information packet is to ensure that all evaluators approved to conduct EIP evaluations are fully informed about the Federal reporting requirements on child outcomes and that they understand their responsibilities for assisting with the data collection process for children included in child outcomes samples and for whom they are selected as an evaluator.

13. I am an evaluator; do I need to prepare all of my children for participation in the Child Outcomes data collection?

No. The municipality is responsible for notifying evaluators when a child is included in a child sample. Evaluators only are responsible for assisting in the child outcome data collection process, in accordance with the procedures described in the Department's August 25, 2006 memorandum, for children who are included in a child sample.

14. I am no longer an evaluator and I received a "Dear Early Intervention Evaluator" letter sent to evaluators by the NYS EIP, do I need to take any action?

No.

15. Attachment 5 in the Department's field memorandum, the "Evaluation Outcomes Summary Form" states that it may be used by evaluators. Is it optional?

Evaluators are required to document information gathered through the evaluation process on the child's status in each of the three child outcome areas. The evaluator should use either the "Evaluation Summary – Federal Child Functional Outcome Areas" form or the Developmental Milestones Checklist- Evaluator Edition,developed by the Institute for Child Development, University at Binghamton, to document this information.

16. Must each evaluator who participated in the evaluation be at the first IFSP meeting or be available by phone? Instructions for this plan state Evaluator must participate and then says a representative from the evaluation agency may attend. This representative may never have actually observed the child.

Evaluators are responsible for participating in the IFSP meeting. If an evaluator is unable to attend the meeting, arrangements must be made for the evaluator's involvement in the meeting, by participating in a telephone conference call or having a knowledgeable, authorized representative attend the meeting. This representative must be a person who was directly involved the child's multidisciplinary evaluation.

As stated in the response to Question 15, Evaluators are responsible for submitting either the Developmental Milestones Checklist – Evaluator Edition(developed by the Institute for Child Development, University at Binghamton), or the Evaluation Summary – Federal Child Outcome Areas (developed by the Department and issued as an appendix to the August, 2006 field memorandum), as an addendum to the child's multidisciplinary evaluation report, if the child is included in the child sample and found eligible for the EIP. This information should be used and considered by individuals participating in the IFSP meeting to complete the COSF.

Role of Service Coordinators

17. Evaluator selection is performed by the service coordinator, what do we need to send to the evaluator and to the service coordinator?

First, it is important to emphasize that parents have the right to select an evaluator from the list of approved evaluators.

Service coordinators should receive a copy of the Department's field memorandum and the flyer for parents explaining the federal requirements related to child and family outcomes and Information Packet on Facilitating the IFSP Discussion to Collect the Child Outcome Data, developed by the Institute for Child Development for the Department.

Evaluators should receive a copy of the Department's field memorandum and Evaluator Information Packetdeveloped by the Institute for Child Development for the Department. If the municipality contracts with agencies or individuals for initial service coordination, the municipality may delegate responsibility to the initial service coordinator for communicating with and supplying evaluators with these materials.

All materials are also available and can be downloaded from the Department of Health's website at: www.health.ny.gov/community/infants_children/early_intervention/child_outcomes

18. How can an Initial Service Coordinator participate in the entry part of the outcome study if they did not have the opportunity to observe the evaluation or have not had much interaction with the child?

If the initial service coordinator did not have the opportunity to observe the evaluation and has not had that much interaction with the child, he or she can still participate by helping to facilitate the discussion about the child outcomes. If there is another individual facilitating the meeting (e.g., the EIO/D) then the service coordinator would have a minimal role, but may be able to help if the parents are having difficulty understanding the process or have an emotional reaction to the rating process.

Role of Providers

19.Was the "Dear Colleague" letter sent to providers by the NYS EIP intended to notify the provider that there will be provider-required data collection in the future? Do the providers need to take any action?

At the present time, providers who do not provide service coordination or evaluation services do not need to take any action. The "Dear Colleague Letter" was sent to providers to ensure all participants in the EIP are fully informed about the federal requirements to collect child and family outcome data.

However, providers who deliver early intervention services to children included in child outcome samples will be involved the collection of exit data, for those children who receive services for at least six months. The Department will issue guidance in the near future on procedures to be used for collection of exit data.

20. Will the "Dear Colleague" letter sent to providers by the NYS EIP affect future provider approvals?

Yes, providers will be expected to comply with applicable State and federal requirements, including participation in collection of required federal data on child outcomes.

21. How do I document children's inclusion in the child outcome cohort sample in NYEIS?

On the child's home page in NYEIS, there is a section in which information can be recorded to indicate the child's inclusion in the child outcomes cohort sample. For more information, please refer to the NYEIS user manual or email NYEIS Technical Assistance staff at nyeista01@health.ny.gov

Role of Parents

22. When should the parent complete the checklist that accompanies the evaluation? Should it be done before they receive the evaluation so that their answers are not influenced by having read the evaluation? Also, are parents aware to adjust for prematurity?

First, the parent checklist does not accompany the child's evaluation. As discussed in question 16, evaluators are responsible for submitting either the Developmental Milestones Checklist – Evaluator Edition(developed by the Institute for Child Development, University at Binghamton for the Department), or the Evaluation Summary – Federal Child Outcome Areas (developed by the Department and issued as an appendix to the August, 2006 field memorandum), as an addendum to the child's multidisciplinary evaluation report, if the child is included in the child sample and found eligible for the EIP.

The Institute for Child Development has developed a developmental milestones checklist for parents, which is included in the Parent Information Packet, as a tool to assist parents in participating in the IFSP discussion to complete the COSF. There is no requirement that the parent checklist be completed. Rather, it is suggested as a way to help parents be active participants in the process. If parents choose to complete the checklist, they should do so before the IFSP meeting. It does not necessarily have to be completed prior to the child's evaluation or parent receipt of the evaluation report.

The Developmental Milestones Checklist is not a formal developmental assessment instrument. Therefore, there it is not necessary that any adjustment be made relative to prematurity. However, the COSF does require the IFSP team to consider the child's current developmental status with respect to expectations for the child's age. Therefore, for children who were born prematurely, it is appropriate for the facilitator and/or evaluator to discuss the concept of adjusting for prematurity as part of the IFSP meeting, to ensure the accuracy of the COSF ratings.

Collection of Exit Data

23. A six-month review of the IFSP can be held by telephone. Sometimes, there is no formal meeting for a child when everyone agrees that services are to be discontinued because all goals have been met. This practice does not allow for development of the exit outcome rating. What should be done if there is a phone meeting?

If there is no formal in-person meeting for a child when everyone agrees that services are to be discontinued because all goals have been met, and the child has received early intervention services for at least six months and is included in a child sample, the exit outcome rating can be collected by telephone or by other mechanisms (e.g., submission of independent ratings by service providers, parents, and the child's service coordinator and EIO/D).