Overview of the Evaluation and Eligibility Process

Introduction

Purpose of this document: To convey standards and best practices for determining eligibility for early intervention services so there is a consistent approach to eligibility determination with clear and specific guidelines for each domain. This document reflects the work of the Eligibility Workgroup that convened on a regular basis from March 2001 to July 2003.

Both the federal Individuals with Disabilities Education Act (IDEA) and the state law (Chapter HFS 90, Wisconsin Administrative Code) give guidelines on eligibility determination. However, questions remain and clarification is needed. To maintain a quality Birth to 3 Program statewide, consistent standards are appropriate. This document is an attempt to clarify Wisconsin’s guidelines for the process of determining eligibility within the Birth to 3 Program.

In accordance with the law, determining eligibility means that any child who meets the criteria for “developmental delay” or who has a diagnosed condition with a high probability of resulting in developmental delay may be eligible for services through the Birth to 3 Program. The decision about eligibility is made by a team. This document describes the process of referral, the composition of the Early Intervention team (EI Team) and determination of eligibility prior to the provision of intervention. For the purposes of this document, EI Team means the interdisciplinary team as defined in HFS 90.03 (17).

This document includes specific considerations and resources for evaluating each of the five developmental areas: cognitive, communication, gross and fine motor, social/emotional and adaptive/self-help. Screening, evaluation and assessment are defined and their differing applications during the process of eligibility determination are presented.

The Law

Chapter HFS 90, Wis. Adm. Code

Guidelines in Determining Eligibility

According to HFS 90.08 (5) and (6), a child is eligible for early intervention services in the Birth to 3 Program if the EI team determines that the child is developmentally delayed or that the child has a diagnosed physical or mental condition which will likely result in a developmental delay.

HFS 90.08(5) Determination of a Developmental Delay.

• (a) A determination of developmental delay shall be based upon the EI team’s clinical opinion supported by:
  • 1. A developmental history of the child and other pertinent information about the child obtained from parents and other caregivers;
  • 2. Observations made of the child in his or her daily settings identified by the parent including how the child interacts with people and familiar toys and other objects in the child’s environment;
    AND
  • 3. Except as provided under paragraph (b), a determination of at least 25% delay in one or more areas of development as measured by a criterion referenced instrument, or a score of 1.3 or more standard deviation below the mean in one or more areas of development as measured by a norm referenced instrument, and interpreted by a qualified professional based on informed clinical opinion. In this subdivision, areas of development mean:
    • a. Cognitive development;
    • b. Physical development, including vision and hearing;
    • c. Communication development;
    • d. Social and emotional development; and
    • e. Adaptive development which includes self-help skills.
• (b) If the results of the formal testing under paragraph (a) 3 closely resemble but do not equal the standard in paragraph (a) 3 for a developmental delay but observation by qualified personnel or parents indicates that some aspect of the child’s development is atypical and is adversely affecting the child’s overall development, the EI team may use alternative procedures or instruments that meet acceptable professional standards to document the atypical development and to conclude, based on informed clinical opinion, that the child should be considered developmentally delayed.
  Note: Examples of atypical developments are asymmetrical movement, variant speech and language patterns, delay in achieving significant interactive milestones such as exhibiting a pleasurable response to a caregiver’s attention, and presence of an unusual pattern of development such as a sleep disturbance or eating difficulties.

Currently a note follows this section in HFS 90. This note will be replaced with a reference to the list that appears in this document on page 15, titled “Diagnosed Conditions and Atypical Development –Guidance for Wisconsin’s Birth to 3 Program”. High probability means that evidence has been shown that the condition has a 50% or greater likelihood of resulting in a developmental delay.

Setting the scene

Any discussion of federal and state laws and their application is incomplete without incorporating the guiding principles and mission of Wisconsin’s Birth to 3 Program. This mission and these guiding principles provide the framework for all decisions and discussions about infants and toddlers who have special needs. They continue to be as appropriate today as when they were developed in 1988. They are indicative of the commitment of the Wisconsin Birth to 3 Program to children and their families.

Guiding the Way

Guiding principles outline what we believe to be important. They provide a framework for our decision-making. The following guiding principles were adopted by the Governor's appointed Interagency Coordinating Council in December 1988.

• Children's optimal development depends on their being viewed first as children and second as children with a problem or disability. All children have the same basic needs for acceptance, affection, nurturing and security. The system should encourage the integration of children with disabilities with children who do not have disabilities. The developmental, social, emotional and physical needs of all children must be considered in the delivery of any service. We must always ask ourselves, are we considering the whole child or just one facet of the child?
• Children's greatest resource is their family. Children are best served within the context of family. Young children's needs are closely tied to the needs of their family. Both must be met to adequately serve the child. The nurturing, love, and commitment of a family cannot be replaced by any array of services. The best way to support children and meet their needs is to support and build upon the individual strengths of their family. The Individualized Family Services Plan (IFSP) focuses on how the system can support the "whole" family, its cultural values, strengths, and needs.
• Parents are partners in any activity that serves their children. Parents or primary caregivers have a unique understanding of their children's needs. They are the primary teachers of their children. They have the special bond of kinship and commitment that no professional will ever have. They must be given the opportunity and encouragement to be a part of the decision-making process and empowered so that they are partners in the services developed for their child.
• Just as children are best supported within the context of family, the family is best supported within the context of the community. Families depend on the positive relationships they make through the formal and informal networks in the community. Community resources should be open and able to respond to all families. Successful supportive services value the integrity of the family, its unique needs and cultural heritage, and provide a link to traditional community resources.
• Professionals are most effective when they can work as a team member with parents and others. This requires flexibility and openness, joint training experiences, shared views of infant and family development, and commitment to team cooperation. The abilities of a variety of individuals both paid and volunteer to teach, assist, and develop relationships which help families must be recognized and promoted.
• Collaboration is the best way to provide comprehensive services. No single agency is able to provide all services to all children and families. Cooperation and shared responsibility are necessary components of a service system that is able to meet the varied needs of children and families. Just as agencies must establish partnerships at the local level, the state must assume a role as a partner with local communities to enhance our mutual ability to serve young children with disabling conditions and their families.
• Early intervention enhances the development of children. Early intervention is appropriate for children and families. It is often cost efficient and effective for society and the taxpayer. The goals of early intervention are to: enhance the capacity of families to meet the special needs of their child, maximize the potential for independent living, and reduce costs to our society.

Mission Statement

The Birth to 3 Program is committed to children under the age of three with developmental delays and disabilities and their families. We value the family’s primary relationship with their child and work in partnership with the family. We work to enhance the child’s development and support the family’s knowledge, skills, and abilities as they interact with and raise their child.

For information on the Birth to 3 program go to the Birth to 3 website:
www.dhfs.Wisconsin.gov/bdds/birthto3

For information about the evaluation and assessment processes, including additional resources, visit the Birth to 3 Program Training and Technical Assistance sites at http://www.waisman.wisc.edu/birthto3/evalandassess.php

In addition to Wisconsin’s Guiding Principles listed above, two national organizations with interest in young children have studied and published principles and recommended practices regarding the evaluation and assessment of young children. The work of the Zero to Three National Center for Infants, Toddlers, and Families and the Division for Early Childhood are included in Appendices 3 and 4. Readers should reflect on these recommendations and integrate them into practice when conducting evaluation and assessment.

While this document defines procedures in determining a child eligible for Birth to 3 services, the Guiding Principles, the Mission Statement, the ZERO TO THREE Principles (Appendix 3) and the Division for Early Childhood (DEC)Recommended Practices (Appendix 4) stress the relationship aspects of evaluating and assessing young children within the family context.

Determining Eligibility for Early Intervention Services

Procedures for determining eligibility for the Birth to 3 Program differ depending on the nature of the referral. The flowchart on page 8 summarizes these procedures. Several definitions and descriptions of team members will help clarify the language used in the chart. A full narrative follows the chart to explain procedures in greater detail.

Definitions:

Screening – Screening is the process of observation, parent interview, and informal assessment of a few indicators of developmental status that indicate whether or not further evaluation is appropriate. If the referral source is unclear about whether the need is for screening or evaluation, further questioning may clarify the issue. If the child has a diagnosis that has a 50% or greater probability of resulting in a developmental delay proceed directly to evaluation. Screening should not be conducted for children who have a strong indication of need for evaluation.

Evaluation – Evaluation is the process of gathering data to determine initial and continuing eligibility. This data may include diagnostic information, records review, parent interview, observation in a natural environment, and administration of formal tests.

Assessment – Assessment is an initial and ongoing process of gathering information to determine developmental functioning in the five areas of development. The purpose of assessment is to identify the unique strengths, needs, and resources of the child and family. It may consist of additional observations and interviews, and administration of formal or informal assessment tools. Assessment may begin concurrently with evaluation. Assessment is useful for appropriate planning for intervention and determining the effects the intervention.

Role of the Service Coordinator

The service coordinator is assigned as soon as possible after the referral. After reviewing the referral information and information from the intake visit the service coordinator selects the team, ensuring that team membership reflects the area(s) of suspected delay.

The service coordinator is the primary contact person for the family and the rest of the team. It is this person’s job to ensure that the family is involved and consulted throughout the entire evaluation process. The service coordinator facilitates the team and schedules evaluations, eligibility meetings, IFSP meetings, and reviews. (See Appendix 5 for best practices involving parents in planning and carrying out the evaluations)

Prior to evaluation the service coordinator should get the child’s medical history, developmental history, educational history (previous interventions), and social history (siblings, peer interactions, behaviors, etc). Any information that is learned about the child’s routine, temperament, and frustration level is also important for the evaluation process. This information should be shared with the team prior to conducting their evaluations.

Coordination with medical and other health care providers is part of the role. To insure good team communication, the service coordinator should facilitate information gathering and sharing during all phases of eligibility determination, the IFSP process and service provision.

Early Intervention Team Membership

The early intervention team must include at least two persons qualified to perform evaluations and assessments, the parent(s), and a service coordinator. (The service coordinator may also be one of the evaluating members, given the appropriate credentials.) The membership of the team must reflect the areas of suspected need. One member of the team must be knowledgeable about typical and atypical development and program planning.

According to HFS 90.08(3)(b) personnel who are qualified to serve on the early intervention team to perform evaluation and make the determination of eligibility are the following (see HFS 90 for qualifications for each):

1. Audiologists
2. Nutritionists
3. Occupational Therapists
4. Physical Therapists
5. Physicians
6. Psychologists
7. Rehabilitation Counselors
8. Registered Nurses
9. School Psychologists
10. Social Workers
11. Special Educators
12. Speech and Language Pathologists
13. Other persons qualified by professional training and experience to perform evaluation and determine eligibility.

Considerations for team membership when there is suspicion of delay in only one area of development

Evaluators must be from at least two different disciplines in area(s) of concern. [HFS 90.08(3a)] One team member must have expertise in the area of typical and atypical development. The composition of the early intervention team depends on the concerns presented by the child and the focus of the evaluation determined by the parents and the rest of the team.

The service coordinator could be the second discipline for the evaluation only if qualified in an area of concern. In this role the service coordinator/evaluator must represent a discipline different than the other early intervention team member. For example, if the service coordinator is an educator, the service coordinator could perform the role of the educator and service coordinator, provided another person on the team represents a different discipline such as speech and language. If the service coordinator is a social worker, the social worker may be the second qualified provider if that person’s skills and training relate to the referral concerns. For example if there are concerns about behavior, social-emotional development or family interactions, a social worker may be prepared to evaluate these concerns.

Both disciplines need to be involved in evaluation and must be represented at the eligibility meeting and IFSP development meeting.

Birth to 3 Program Flow Chart

Flow Chart Narrative

Referrals to the Birth to 3 Program can be made by anyone with knowledge of the child. Possible referral sources include, but are not limited to, parents, grandparents, physicians, hospital discharge planners, social workers, public health providers, child care providers, teachers, Early Head Start providers, etc. The referral may be in writing or may be made in a telephone call. The first job of the Birth to 3 Program intake person is to determine the intent of the referral.

• Does the child have a diagnosed condition?
• Is the child being referred for an evaluation due to a suspected developmental delay or atypical development?
• Is the child being referred for a screening?
• Is the referral non-specific?

Each of these scenarios will be addressed and procedures for follow-up will be provided. If the referral is for evaluation, the 45-day timeline begins with the referral. If the referral is for screening, the 45-day timeline begins if and when a need for further evaluation is indicated.

The child is referred with a diagnosed condition.

1. During the initial referral call or contact, the intake person gathers information to help determine the nature of the diagnosed condition. A service coordinator is assigned immediately. The 45-day timeline begins with the referral. The service coordinator contacts the parents to schedule a home visit and discuss the referral from the parents’ perspective.
2. During the initial visit, the service coordinator establishes rapport with the family, describes the Birth to 3 Program, interviews the parents and obtains appropriate consents (record releases, consents for other team members, consents for evaluations). As much information as can be is gathered in the five areas of development (cognitive, communication, motor, social/emotional and adaptive/self-help). Any available records are reviewed as well as documentation of the child’s diagnosis.
   • a. If the condition is on the list of those with a high probability (50% or greater) of resulting in a developmental delay (see Diagnosed Conditions and Atypical Development Chart 1), an eligibility meeting is scheduled. (Eligibility is a team decision.) Screening should not be done. Evaluation may not be necessary if there is sufficient information available about the child’s current development.
   • b. If the condition is on the list of diagnosed conditions that do not have a high probability of resulting in developmental delay (see Diagnosed Conditions and Atypical Development Chart 2), assemble the Early Intervention Team and schedule evaluation.
   • c. If the condition is not listed on either chart and there are concerns about the child’s development decide with the family whether to screen or evaluate the child and proceed accordingly.
3. Based on the known concerns about the child’s development, the Early Intervention Team is gathered to review reports and conduct any evaluations needed. At a minimum, this team includes the parents, the service coordinator, and qualified persons from at least two disciplines that are appropriate for the area(s) of concern of the child. The discipline in which there is a probability of delay should be represented on the team. At least one person with expertise in typical and atypical development and program planning is a required member of the team.
4. After the initial visit, records and any information gathered by the service coordinator are shared with the rest of the team.
5. The Early Intervention Team meets at a time and location of the family’s convenience. At this eligibility meeting, findings are discussed and a brief summary report is developed. The five areas of development are addressed. Statements of the child’s health status, hearing, vision and nutrition may be included. Together the team makes a determination of eligibility based on the information gathered and informed clinical opinion. The team members sign the summary report.
6. If the team agrees that the child is eligible for services:
   • a. Arrangements are made for further assessment to identify the child’s unique strengths and needs. With parent consent, the family’s strengths, resources, priorities and concerns are also determined. At this time, the child and family’s natural environments, routines and activities are identified. Information about the child’s health, vision, hearing and nutrition should be gathered if it has not already been done.
   • b. The IFSP team (including the family) meets to develop the IFSP. Family and child-focused outcomes are developed and appropriate services and strategies are identified.
   • c. Provide the Early Intervention services and supports as listed on the IFSP under the guidelines of HFS 90.11.
7. If the Early Intervention Team determines after reviewing the records that the child is not eligible based on the diagnosed condition (the probability of developmental delay is less than 50%) and there are concerns about the child’s development:
   • a. The team arranges and conducts an evaluation to determine whether a developmental delay exists or if development is atypical. This evaluation consists of parent interview, observations of the child in typical setting, records review, testing as needed and informed clinical opinion.
   • b. Each team member involved in evaluating the child may prepare an individual report although individual reports are not required. These reports may express opinions about the child’s needs but should not include recommendations for services. While it is understood that some providers may need to make recommendations on reports for third party pay sources, it is not appropriate to bring these to the meeting. This needed information may be added to the report after the meeting. Any individual reports should be made available to the family prior to the meeting.
   • c. The Early Intervention Team meets at a time and location of the family’s convenience. At this eligibility meeting, findings are discussed and a brief summary report is developed. The five areas of development are addressed. Statements of the child’s health status, hearing, vision and nutrition may be included at this point if the information is available. Together the team makes a determination of eligibility based on the information gathered and informed clinical opinion. The team members sign the summary report.
   • d. If the team agrees that the child is eligible for services:
     1. Arrangements are made for further assessment to identify the child’s unique strengths and needs. With parent consent, the family’s strengths, resources, priorities and concerns are also determined. At this time, the child and family’s natural environments, routines and activities are identified.
     2. The IFSP team (including the family) meets to develop the IFSP. Family and child-focused outcomes are developed and appropriate services and strategies are identified.
     3. Provide the Early Intervention services and supports as listed on the IFSP under the guidelines of HFS 90.11.
   • e. If the team determines that the child is not eligible for services at this time, an offer to rescreen the child within 3-6 months is made, information about appropriate community programs is shared, and, if the parent requests and consents, the service coordinator assists with and makes a referral to other programs (HFS90.08 (7)(j)).

The child is being referred for an evaluation due to suspected developmental delays or atypical development. (Screening has already been completed.)

1. During the initial referral call or contact the intake person gathers information to help determine the nature of the referral. A service coordinator is assigned immediately. The 45-day timeline begins with the referral. The service coordinator contacts the parents to schedule a home visit and discuss the referral from the parents’ perspective.
2. During the initial visit, the service coordinator establishes rapport with the family, describes the Birth to 3 Program, obtains appropriate consents (record releases, consents for other team members, consents for evaluations) and interviews the parent(s). As much information as can be is gathered in the five areas of development (cognitive, communication, motor, social/emotional and adaptive/self-help). Any available records are reviewed.
3. The Early Intervention Team is gathered. At a minimum, this team includes the parent(s), the service coordinator, and qualified persons from at least two disciplines that are appropriate for the area(s) of concern for the child. At least one person with expertise in typical and atypical development and program planning must be a member of the team.
4. After the initial visit, records and any information that has been gathered by the service coordinator are shared with the rest of the team.
5. The Early Intervention Team conducts an evaluation to determine whether or not a developmental delay exists or if the child’s development is atypical. The evaluation consists of parent interviews, observation of the child in a typical setting, records reviews, testing as needed and informed clinical opinion.
6. Each team member involved in evaluating the child may prepare an individual report although individual reports are not required. These reports may express opinions about the child’s needs but should not include recommendations for services. While it is understood that some providers may need to make recommendations on reports for third party pay sources, it is not appropriate to bring these to the meeting. This needed information may be added to the report after the meeting. Any individual reports should be made available to the family prior to the meeting.
7. The Early Intervention Team meets at a time and location of the family’s convenience. During this eligibility meeting, findings of the team are discussed and a brief summary report is developed. The five areas of development are addressed. Statements of the child’s health status, hearing, vision and nutrition may be included at this point if the information is available. Together the team makes a determination of eligibility based on the information gathered and informed clinical opinion. The team members sign the summary report.
8. If the team agrees that the child is eligible for services:
   • a. Arrangements are made for further assessment to identify the child’s unique strengths and needs. With parent consent, the family’s strengths, resources, priorities and concerns are also addressed. At this time, the child and family’s natural environments, routines and activities are identified.
   • b. The IFSP team (including the parents) meets to develop the IFSP. Family and child-focused outcomes are developed and appropriate services and strategies are identified.
   • c. Provide the Early Intervention services and supports as listed on the IFSP under the guidelines of HFS 90.11.
9. If the team determines that the child is not eligible for services at this time, an offer to rescreen the child within 3-6 months is made, information about appropriate community programs is shared, and, if the parent requests and consents, the service coordinator assists with and makes a referral to other programs (HFS90.08 (7)(j)).

The child is referred without specification for screening or evaluation.

1. The intake person attempts to determine the intent of the referring party. If no screening has been conducted, the child may be screened to determine if there is reason to proceed to evaluation. Proceed to step 3.
2. If the concerns indicate, screening may be skipped and the service coordinator is assigned to begin the evaluation process (step 4).
3. If the screening does not indicate the need for an evaluation, the family is offered rescreening within 3-6 months and is informed of appropriate community resources.
4. If screening indicates the need for evaluation a service coordinator is assigned immediately. The 45-day timeline begins when the screening indicates the need for evaluation.
5. The service coordinator contacts the parents to discuss the screening results and schedule a home visit.
6. During the initial visit, the service coordinator establishes rapport with the family, describes the Birth to 3 Program, secures appropriate consents (record releases, consents for other team members) and interviews the parent(s). As much information as can be is gathered in the five areas of development (cognitive, communication, motor, social/emotional and self-help/adaptive). Any available records are reviewed.
7. The Early Intervention Team is gathered. At a minimum, this team includes the parent(s), the service coordinator, and qualified persons from at least two disciplines that are appropriate for the area(s) of concern for the child. One person with expertise in typical and atypical development and program planning is a required member of the team.
8. After the initial visit, records and any information that has been gathered by the service coordinator are shared with the rest of the team.
9. The Early Intervention Team conducts an evaluation to determine whether a developmental delay exists or if the child’s development is atypical. The evaluation consists of parent interviews, observation of the child in a typical setting, records review, testing as needed and informed clinical opinion.
10. Each team member involved in evaluating the child may prepare an individual report although individual reports are not required. These reports may express opinions about the child’s needs but should not include recommendations for services. While it is understood that some providers may need to make recommendations on reports for third party pay sources, it is not appropriate to bring these to the meeting. This needed information may be added to the report after the meeting. Any individual reports should be made available to the family prior to the meeting.
11. The Early Intervention Team meets at a time and location of the family’s convenience. At this eligibility meeting findings are discussed and a brief summary report is developed. The five areas of development are addressed. Statements of the child’s health status, hearing, vision and nutrition may be included at this point if the information is available. Together the team makes a determination of eligibility based on the information gathered and informed clinical opinion. The team members sign the summary report.
12. If the team agrees that the child is eligible for services:
    • a. Arrangements are made for further assessment to identify the child’s unique strengths and needs. With parent consent, the family’s strengths, resources, priorities and concerns are also addressed. At this time, the child and family’s natural environments, routines and activities are identified.
    • b. The IFSP team (including the family) meets to develop the IFSP. Family and child-focused outcomes are developed and appropriate services and strategies are identified.
    • c. Provide the Early Intervention services and supports as listed on the IFSP under the guidelines of HFS 90.11.
13. If the team determines that the child is not eligible for services at this time, an offer to rescreen the child within 3-6 months is made, information about appropriate community programs is shared, and, if the parent requests and consents, the service coordinator assists with and makes a referral to other programs (HFS90.08 (7)(j)).

The child is referred for screening:

1. The child is screened to determine if there is reason to proceed to evaluation
2. If the screening does not indicate the need for an evaluation, the family is offered rescreening within 6 months and is informed of appropriate community resources.
3. If screening indicates the need for evaluation a service coordinator is assigned immediately. The 45-day timeline begins when the screening indicates the need for evaluation.
4. The service coordinator contacts the parents to discuss the screening results and schedule a home visit.
5. During the initial visit the service coordinator establishes rapport with the family, describes the Birth to 3 Program, secures appropriate consents (record releases, consents for other team members) and interviews the parents. As much information as can be is gathered in the five areas of development (cognitive, communication, motor, social/emotional and self-help/adaptive). Any available records are reviewed.
6. The Early Intervention Team is gathered. At a minimum, this team includes the parent(s), the service coordinator, and qualified persons from at least two disciplines that are appropriate for the area of concern for the child. At least one person with expertise in typical and atypical development and program planning is a required member of the team.
7. After the initial visit, records and any information that has been gathered by the service coordinator are shared with the rest of the team.
8. The Early Intervention Team conducts an evaluation to determine whether or not a developmental delay exists or if the child’s development is atypical. The evaluation consists of parent interview, observation of the child in a typical setting, records review, testing as needed and informed clinical opinion.
9. Each team member involved in evaluating the child may prepare an individual report although individual reports are not required. These reports may express opinions about the child’s needs but should not include recommendations for services. While it is understood that some providers may need to make recommendations on reports for third party pay sources, it is not appropriate to bring these to the meeting. This needed information may be added to the report after the meeting. Any individual reports should be made available to the family prior to the meeting.
10. The Early Intervention Team meets at a time and location of the family’s convenience. At this eligibility meeting findings are discussed and a brief summary report is developed. The five areas of development are addressed. Statements of the child’s health status, hearing, vision and nutrition may be included at this point if the information is available. Together the team makes a determination of eligibility based on the information gathered and informed clinical opinion. The team members sign the summary report.
11. If the team agrees that the child is eligible for services:
    • a. Arrangements are made for further assessment to identify the child’s unique strengths and needs. With parent consent, the family’s strengths, resources, priorities and concerns are also determined. At this time, the child and family’s natural environments, routines and activities are identified.
    • b. The IFSP team, including the family, meets to develop the IFSP. Family- and child-focused outcomes are developed and appropriate services and strategies are identified.
    • c. Provide the Early Intervention services and supports as listed on the IFSP under the guidelines of HFS 90.11.
12. If the team determines that the child is not eligible for services at this time, an offer to rescreen the child within 3-6 months is made, information about appropriate community programs is shared, and, if the parent requests and consents, the service coordinator assists with and makes a referral to other programs. [HFS90.08 (7)(j)]

Diagnosed Conditions and Atypical Development

Guidance for Wisconsin’s Birth to 3 Program

Children are found eligible for Wisconsin’s Birth to 3 Program because of:

• a) A diagnosed physical or mental condition with a high probability of resulting in a developmental delay, based on the early intervention team’s informed clinical opinion and supported by a physician’s report documenting the condition.
• b) A developmental delay of 25% (or 1.3 standard deviation below the mean) in one or more areas of development. This delay is documented from a number of perspectives (i.e., observations in natural environments, testing procedures, review of records, parent report and informed clinical opinion) by a qualified early intervention team that includes the parents.
• c) Atypical development that is based on the informed clinical opinion of the early intervention team. When testing results closely approach but do not demonstrate a delay (25% or -1.3 S.D.) and observations indicate that some aspect of the child’s development is atypical and adversely affecting the child’s overall development, the early intervention team may use alternative procedures to document atypical development and conclude that the child should be considered developmentally delayed.

The following information was prepared by the Birth to 3 Eligibility Work Group to give clarity to an evaluation team in determining a child’s eligibility for the Birth to 3 Program in Wisconsin.

A. Diagnosed Conditions:

Some children served by Wisconsin’s Birth to 3 Program are found eligible based on a diagnosed condition that has a high probability of resulting in a developmental delay. High probability implies that a clearly established case has been made for a developmental delay. In Wisconsin, “high probability” is defined as 50% or greater likelihood of delay.

Information regarding diagnosed conditions changes as medical advances and new information becomes available. For example, it was once believed that all children born with HIV or cocaine exposure would have a high probability of having developmental delays. Recent research and experience has described different outcomes for these children.

Research is a dynamic process and reflects medical and intervention advancements. As a result the eligibility work group has developed a list of diagnosed conditions that is based on the best thinking and research in 2003. The list is based on a) a review of other states’ lists of diagnosed conditions, b) input from physicians with expertise in genetics, neonatology, and development and c) a review of published literature.

See Chart 1 for a listing of the current conditions that conform to the 50% or greater probability guideline. A diagnosis of one of these conditions would mean a child is eligible for Birth to 3 regardless of their current development functioning. Information about the child’s developmental status, however, is needed to develop an Individualized Family Service Plan. This list is definitive in that the conditions listed in Chart 1 have a 50% or greater probability of resulting in delay, but it is not inclusive as there may be other conditions that will be added.

B. Developmental Delay:

It is not necessary to have a diagnosed condition to be eligible for the Birth to 3 Program. In fact, the majority of children served in Wisconsin’s Birth to 3 Program are eligible because of developmental delays (25% or –1.3 standard deviations below the mean) in at least one of the following five areas of development: cognitive, communication, motor, self-help/adaptive, and social emotional.

Research suggests that there are numerous diagnosed conditions that do not have a high probability of resulting in developmental delay. Clearly, there are some diagnosed conditions such as neurofibromatosis and torticollis, for which there is not evidence that a developmental delay will result. This means that these conditions in and of themselves do not point toward eligibility for early intervention; however, there may be other circumstances in the child’s life (e.g., health status, family situations) that may influence the course of the child’s development. When developmental concerns exist concurrent with these diagnosed conditions, the child’s evaluation team would determine eligibility based on whether there is delayed or atypical development. (See Chart 2-I & II.)

C. Atypical Development: In some instances a 25 % delay or a -1.3 SD below the mean may not exist, but in the opinion of the early intervention team, some aspect of the child’s development is atypical. The development may be unusual in its pattern and adversely affects the child’s overall development. Under these circumstances, the team substantiates their clinical opinion with observations, interpretations of test results, review of records, and parent reports to determine eligibility based on atypical development. Under these circumstances, it is the child’s atypical development, not a condition that leads to eligibility. (See Chart 2-III.)

Chart 1: Diagnosed Conditions

Examples of diagnosed conditions with a high probability (50% or more) of resulting in developmental delay are listed below. Please note that this is a definitive, but not an inclusive list.

1. Genetic
   • A. Chromosomal anomalies
     (Down syndrome, trisomy 13, trisomy 18, 5p deletion syndrome (Cri du chat), 4p deletion syndrome, 1p36 deletion syndrome, 17p13.3 deletion syndrome (Miller-Dieker syndrome), Fragile X syndrome-in boys)
   • B. Inborn errors of metabolism
     (Storage disorders (such as Hurler syndrome, Hunter syndrome, and I-Cell disease), Untreated or poorly controlled PKU, Maple Syrup Urine disease, Tay-Sachs disease, Lesch-Nyhan disease)
   • C. Other:
     (Angelman syndrome, Prader-Willi syndrome, Cornelia deLange syndrome, Smith-Lemli-Opitz syndrome, Williams syndrome, CHARGE syndrome, Osteogenesis Imperfecta, Achondroplasia
2. Perinatal
   • A. Extreme prematurity (born at 26 weeks gestation or earlier)
     (This is not a standard definition but for use with this document only.)
   • B. Extremely low birth weight (less than 1000 grams or 2.2 pounds)
   • C. Prenatal infections
     (Toxoplasmosis, Rubella, CMV, Herpes, TORCH)
   • D. Prenatal toxic exposures
     (Fetal alcohol syndrome-FAS)
   • E. Fetal and Neonatal Hemorrhage
     (Grade III or Grade IV Intraventricular Hemorrhage )
3. Neurological
   • A. Congenital anomalies of the brain
     (holoprosencephaly, lissencephaly, microcephaly)
   • B. Anomalies of the spinal cord
     (meningomyelocele)
   • C. Degenerative or progressive disorders
     (muscular dystrophies, leukodystrophies, spinocerebellar disorders, pediatric AIDS)
   • D. Cerebral palsy, all types, including generalized hypotonic patterns
   • E. Abnormal movement patterns
     (ataxias, myoclonus, dystonia)
   • F. Neurocutaneous diseases
     (Sturge-Weber, Tuberous sclerosis)
   • G. Other Central Nervous System (CNS) influences -CNS trauma
     (shaken baby syndrome or sudden impact syndrome)
   
4. Sensory
   • A. Blind or visually impaired
   • B. Deaf or hard of hearing as defined by the Wisconsin Birth to 3 Universal Newborn Hearing Work Group, 2001 (See page 19.)
   • C. Deafblind
5. Physical
   • A. Congenital
     (Arthrogryposis multiplex congenita)
6. Social-emotional
   • Autism disorders, pervasive developmental disorder (PDD) as diagnosed by a licensed psychiatrist or clinical psychologist under the classification system in the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood/ American and/or the Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders (DSM-IV R)

Chart 2: Evaluate for Developmental Delay, including Atypical Development

This chart describes the five areas of development considered for determining a developmental delay and lists examples of diagnosed conditions and atypical behaviors that may bring a child to the Birth to 3 Program for consideration of eligibility. Children with these conditions or characteristics should be screened and/or evaluated for Birth to 3 eligibility based on concerns regarding their current developmental circumstances.

• I. Developmental Delays
  To conclude that a child is eligible, the early intervention team must document a 25% delay or development that is 1.3 standard deviations below the mean in one or more of the five developmental areas below.
  • A. Cognitive development;
  • B. Physical development, including vision and hearing;
  • C. Communication development;
  • D. Social and emotional development; and
  • E. Adaptive development, including self-help skills
• II. Diagnosed Conditions
  The following diagnosed conditions do not have documented evidence of having a high probability of resulting in developmental delay. However, children with these conditions may have developmental delays or atypical behaviors that would result in their eligibility for the Birth to 3 Program. If the child has a condition not listed below in Chart 2 or previously in Chart 1, the early intervention team should investigate the probability of the condition resulting in delay. Please note that this is a definitive, but not inclusive list.
  1. Genetic(with increased risk for developmental delay)
     • A. Chromosomal anomalies
       (e.g., Turner syndrome, Fragile X syndrome (in girls), 22q deletion syndrome)
     • B. Inborn errors of metabolism
       (e.g., Classical Galactosemia, Homocystinuria)
     • C. Other Syndromes
       (e.g., Goldenhar syndrome, Neurofibromatosis, Marfan syndrome)
  2. Perinatal
     • A. Premature (born 27 to 37 weeks gestation)
     • B. Small for gestational age (SGA) (weighing less than the 10th percentile for gestational age, using a standard weight-for-age chart)
     • C. Low birth weight (born 1001 to 2000 grams)
     • D. Prenatal toxic exposures
       (e.g., alcohol, polydrug exposure, fetal hydantoin syndrome, exposure to cocaine, exposure to narcotics)
     • E. Fetal and Neonatal Hemorrhage
       (e.g., Grade I intraventricular hemorrhage)
     • F. Other Conditions originating in the perinatal period
       (e.g., seizures, low apgars)
  3. Neurologic
     • a. Anomalies of the brain
       (e.g., absence of the corpus callosum, hydrocephalus, macrocephaly)
     • B. Anomalies of the spinal cord
       (e.g., tethered cord)
     • C. Epilepsy
     • D. Abnormal movement patterns
       (e.g., severe tremor, gait problems, asymmetry in movement)
     • E. Other Central Nervous System (CNS) influences
       1. CNS or spinal cord tumors
       2. CNS infection (e.g., meningitis, abscess)
       3. CNS toxins (e.g., lead poisoning)
     • F. Variant speech and language patterns
       (e.g., intelligibility, fluency)
  4. Sensory
     • A. Low vision after correction
       (e.g., severe strabismus, visual field defects, poor functional use of vision)
     • B. Intermittent hearing loss
       (e.g., chronic otitis media or serous otitis media greater than 4 months duration)
  5. Physical
     • A. Congenital
       (e.g., cleft lip and palate, torticollis, limb deformity, club feet, hip dysplasia)
     • B. Acquired
       (e.g., severe arthritis, scoliosis, brachial plexus injury)
     • C. Chronic illness or medically fragile
       (e.g., delays in a child’s development that may result from an illness or treatment for an illness such as chronic heart disease, cystic fibrosis, technology dependent, hypothyroidism, or cancer)
  6. Social Emotional
     Diagnosed psychiatric conditions or severe emotional/behavioral disorders diagnosed by a licensed psychiatrist or clinical psychologist under the classification system in the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood /American and/or the Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-R). (e.g., mood disorders of infancy or early childhood - anxiety, depression, disruptive behavior disorders, reactive attachment disorder of infancy or early childhood, post traumatic stress disorder, self-injurious behaviors)
• III. Atypical Behavior The following examples describe circumstances under which a child may demonstrate atypical development that should be considered a developmental delay. When parents and others identify concerns in these areas, and test results approach, but do not demonstrate a delay (25% or -1.3 S.D.) or scattered skill development is present, alternative measures including observations and parent reports should be used to make an informed opinion about whether a child should be considered developmentally delayed.
  1. Growth and Feeding
     (e.g., severe growth delay, failure to thrive, feeding problems, gastrostomy for feeding)
  2. Sensory and Regulatory
     (e.g., chronic problems with sleep, attention, and/or eating; sensory processing disorders)
  3. Chronic Illness/Medically Fragile
     (e.g., differences in a child’s development that may result from an illness or treatment for an illness such as chronic heart disease, cystic fibrosis, technology dependent, hypothyroidism, cancer)
  4. Social Emotional
     (e.g., atypical social interaction with caregivers and peers, delays or differences in ability to communicate emotional needs or achieve expected emotional milestones such as pleasurable interest in adults and peers)
  5. Motor
     (e.g., asymmetrical movements, atypical tone, poor balance, problems in motor planning)
  6. Communication
     (e.g., variant speech and language patterns)

Determining Eligibility for Children with Hearing Loss

The process for determining eligibility for early intervention is the basis for determining eligibility for children with hearing loss. A child is eligible for early intervention services under the Birth to 3 Program if the evaluation conducted by the early intervention team determines that the child is developmentally delayed or that the child has a diagnosed physical or mental condition which will likely result in developmental delay. A determination of high probability that a child’s diagnosed condition will result in a developmental delay must be based upon the team’s informed clinical opinion supported by a physician’s report documenting the condition. High probability implies that a clearly established case has been made for a developmental delay.

Early intervention team members. Any early intervention team performing an evaluation must include a service coordinator and at least one member who has expertise in the assessment of both typical and atypical development and expertise in child development and program planning. Parents should be involved throughout the evaluation process. Members of the early intervention team must be from two different disciplines in the areas of the child’s suspected needs.

Therefore, for a child with a diagnosed hearing loss, one or more members of the early intervention team must be able to interpret audiological reports and understand the developmental impact of hearing loss.

Eligibility for a child with diagnosed hearing loss. The regulations for the Birth to 3 Program do not base eligibility on specific types or degree of hearing loss. There is no required decibel loss nor are children with unilateral hearing loss excluded.

Once a child with a diagnosed hearing loss is referred, the early intervention team needs to determine whether the child’s hearing loss is likely to result in a developmental delay. The team needs to consider factors such as the type and degree of the hearing loss, the presence of other conditions, and the potential effects of the hearing loss on the development of the child. The team should make use of the scientific evidence about the long-term developmental consequences of hearing loss in infants and toddlers. A child with a hearing loss does not need to demonstrate a developmental delay to be eligible for the Birth to 3 Program.

If the early intervention team determines that the child’s hearing loss is not predicted to result in developmental delay, they must offer to reconsider the child’s eligibility within 6 months. The early intervention team should also provide information about, and offer to refer the family to, community services that may benefit the child and family. (2001)

Procedures for Initial Evaluation

Regardless of the expressed area(s) of concern there are basic commonalities for the evaluation process for all domains. The evaluation process begins with the referral and continues until the eligibility meeting. The guidelines presented here outline a procedure that insures that the child’s and the family’s best interests are served and that the evaluation is comprehensive and considers “the whole child”. The following components should be part of every evaluation.

1. Prior to Evaluation
   • Review records including referral information and any medical records:
     • Gather pertinent information regarding birth history, medical history, diagnosis, and caretaker concerns prior to the scheduled evaluation.
     • Identify family concerns.
     • Consider the diagnosis, area(s) of concern from the referral source and complications.
     • If joint evaluation, discuss evaluation times and strategies.
     • Calculate the child’s chronological and adjusted age (if the child was born less than 37 weeks gestation). Adjust for prematurity until the child is 24 months old.
   • Schedule an appointment with the family for the evaluation
     • Begin to establish a rapport with the family from your first contact with them.
     • Schedule an evaluation in the child’s natural environment at a time that is optimal for the child and allows a family member to be present.
   • Select the evaluation approach. Individualize the evaluation based on the child, observations, the records review and concern(s) expressed by the family. No single procedure may be used as criteria for determining eligibility [HFS 90.08(7)(e)]. In selecting the evaluation approaches and instruments it is critical to consider any motor, language, or sensory impairments of the child in order to ensure accurate reflections of the child’s skill development (HFS 90.08 (6).
     • Possible Evaluation Procedures:
       1. Interviews
       2. Developmental observations
       3. Criterion or norm-referenced evaluation tools (See Appendix 6 for a partial listing. Additional tools will be found in the sections for evaluation of developmental areas.)
       4. Parent/caregiver developmental history report
   • Determination of a developmental delay for the Birth to 3 Program is based upon the identification of at least a 25% delay in one or more areas of development as measured by a criterion-referenced instrument or a score of 1.3 or more standard deviations below the mean in one or more areas of development as measures by a norm-referenced instrument, and interpreted by a qualified professional based on informed clinical opinion (HFS 90.08 (4)).
   • It is important that evaluators understand the differences in criterion- versus norm-referenced tests, objectives of the test and test characteristics when interpreting and reporting scores used for the determination of a developmental delay. (See Appendix 7 for other considerations.)
   • Criterion-referenced tests (25% or more delay for eligibility):
     • Compare individuals to themselves over time rather than to standardized population and a given point in time.
     • Identify performance along developmental continuum from least to most advanced.
     • Measure the degree to which an individual achieves specific level of development or performance.
   • Norm-referenced tests (1.3 or more standard deviations below the mean for eligibility):
     • Compare an individual’s average level of development with others of similar age, gender, and socioeconomic status,
     • Result in percentile norms/standardized scores.
2. At the Evaluation
   • Discuss the evaluation with the family:
     • Confirm that you have the needed consent for evaluation.
     • Explain the process of the evaluation. Give functional examples of test items and explain why the skill is important or what it assists in developing.
     • Explain the role of each evaluator, the areas to be covered and the tools to be used.
     • Gain information about the child’s current health and mood for that day.
     • Review family concerns.
     • Review medical reports and information gathered by the service coordinator.
     • Ask the parent some of the child’s favorite things to do, and bring that into the evaluation.
     • Ask about recent developmental changes (i.e. since the intake interview).
     • Ask parents if they have any questions and encourage them to ask questions throughout the evaluation.
     • If adjusting for prematurity, explain this to the family.
     • Observe the child in his/her natural environment and in interactions with parents and siblings.
     • Establish a rapport with the child by respecting his/her personal space needs.
     • Administer evaluation tools in accordance with their individual guidelines.
   • Clinical Observation During Evaluation
     Consider the following questions:
     • What impairments may have been affecting the child’s ability to complete a task (vision, motor impairment including strength and tone, hearing, language delays, social/emotional issues)?
     • What types of modifications are needed? Are environmental modifications needed (smaller space, softer voice, singing voice, visual cues)?
     • What type of reinforcement is the child responding to?
     • Is attention interfering with child’s ability to complete the task?
     • Is the child able to complete the task spontaneously, in imitation, or with verbal or physical cues?
     • How does the child interact with his toys versus toys used for evaluation purposes?
     • Does the child generalize skills to different toys, people, and environments? Seek parent input.
     • What is the child’s learning style? Does the child learn best auditorally, visually, through manipulation of objects, combination of some?
     • Are there behaviors interfering with the child’s performance? If so, what are they?
     • Are there sensory processing issues that are interfering with the child’s ability to participate? Are they on constant defense or is their level of arousal too low?
   • Follow-up questioning – Ask parents questions to “fill in the blanks”. Was child’s performance typical of him/her? Are there any other things that didn’t show up during the evaluation?
   • Closing Conversation
     • Communicate initial impressions. Include child’s strengths.
     • Invite caregiver questions.
     • Provide home activity suggestions if requested.
     • Address all of the family’s questions and all of their initial concerns during the evaluation session.
     • Tell the family that the service coordinator will make a follow up contact to schedule a discussion regarding eligibility.
   • After the Evaluation
     • Interpreting Test Results/Preparing Evaluation Report
       Score test in accordance with protocol and analyze findings. Never alter statistics by changing a standard score into a percent delay.
       • Whenever possible, use standard deviation scores in accordance with the HFS 90.08 to determine extent of delay.
       • Describe strengths and functional limitations and/or developmental milestone delays identified through the evaluation.
       • Write a family-friendly report that avoids or defines technical lingo. The individual report should:
         • Provide a common understanding of the child’s current development.
         • Include the child’s strengths and address the items the child was able to do.
         • Help parents participate as equally informed members of their child’s team.
         • Assist with communication with physicians, extended family, childcare providers, and other people and agencies involved with the family.
         • Support applications for other programs (Katie Beckett, Family Support, etc.).
         • Facilitate third party reimbursement.
         • Represent the Birth to 3 Program in the community.
         • Should not state eligibility nor make suggestions about specific services. This information can be added later if necessary for third party reimbursement. Opinions may be expressed, however.
         • Be made available to the service coordinator, the family and all team members prior to the eligibility meeting.
   • Participate in Eligibility Meeting
     • Eligibility is a team decision that includes the family. Individual evaluators should present their findings and observations. The team discusses these findings and observations. Determine if tests scores meet eligibility criteria (1.3 standard deviation below mean for norm-referenced test or 25% delay in one or more areas of development).
     • If there is not adequate information from testing, it will be important to use informed clinical opinion and team input to determine eligibility. Evaluations or assessments may not show a significant delay, but clinical opinion or team discussion may validate eligibility. Be sure to document this information in the team report.
     • Each initial evaluation (whether or not the child was found eligible) must result in a written report. The report should be readable and useful to parents and members of various disciplines. The EI team summary report reviews the findings of all team members and includes a statement of the team’s consensus about eligibility. The report should summarize the child’s development in the areas of cognitive development, communication development, physical development (gross motor, fine motor, vision and hearing), social/emotional development, and adaptive/self-help development.
     • The report should also include the location of the evaluation and a brief description of the process and instruments used. A summary of the family’s role in the evaluation process is helpful. When reviews of outside evaluations are used, indicate that such a review was performed in the written report
     • The initial evaluation should include a statement of eligibility including the reason why the child was found eligible or not. All team members must sign the report.

Informed Clinical Opinion
Standardized instruments are often insufficient to adequately measure the developmental levels of infants and toddlers. They may not provide enough information and the scores obtained from available evaluation instruments may not be as valid or reliable as one would like. They may not identify children who are indeed in need of Birth to 3 services. Therefore, it is extremely important to use informed clinical opinions of qualified team members when making decisions regarding eligibility for very young children. In a report by the U.S. Department of Education’s Office of Special Education Programs (OSEP), the issue of informed clinical opinion as a component of evaluation and determining eligibility was addressed. “Requiring that the evaluation and assessment of each child be based on informed clinical opinion in determining eligibility helps to ensure that children needing early intervention services will be appropriately identified at the earliest possible age” (OSEP, August 25, 2000).

Eligibility
If the team decides that the child is eligible, arrangements are made to continue the process of IFSP development. (See page 10, #7d.) Following eligibility determination further assessment may be necessary prior to IFSP development.

Ineligibility
If the team determines that the child is not eligible for services at this time, an offer to rescreen the child within 3-6 months is made, information about appropriate community programs is shared, and, if the parent requests and consents, the service coordinator assists with and makes a referral to other programs (HFS90.08 (7)(j)). Additional information offered to the family may include:

• Handouts of activities to facilitate area(s) of developmental concern that led to the initial referral.
• List of resources available in the community that may facilitate/enhance child’s development or parent/child interactions.
• Name, address, phone number, email address of contact person in case of future concerns.
• Follow-up letter to physician and/or referral source to summarize findings.

Appendix 1

Eligibility Workgroup Members

Michelle Bjella
Speech and Language Pathologist
Achievement Center

Theresa Danner
Parent
Menomenee Falls

Michelle Davies
Early Childhood Special Education
CESA 5

Diane Fett
Program Coordinator
Fond du Lac Co. DCP

Sharon Fleischfresser
Children with Special Health Care Needs
Division of Public Health

Patricia Grede
Program Coordinator
Penfield Children's Center

Jill Haglund
Early Childhood Special Education
Dept. of Public Instruction

Jean Koszalinski
Program Coordinator
Waupaca Co. DHS

Nicole Lauritzen
Early Childhood Special Education
Waupaca Co. DHS

Liz Kraniak
Program Coordinator, Birth to Three Prog.
Milwaukee Co. DHS

Donna Miller
Facilitator
Birth to 3 Program

Vicki Mulvey
Service Coordinator/Program Coordinator
Brown Co. DHS

Seth Newman
Physical Therapist
Bridges for Families

Jesse Raymaker
Program Coordinator/ICC
Cerebral Palsy, Inc.

Paula Rhyner
SLP/Dept of Communication Science & Disorders
UW-Milwaukee

Peggy Rosin
SLP/Dept Communicative Disorders
UW-Madison

David Sorenson
Birth to 3 Program Coordinator
Birth to 3 Program

Jan Stevens
Occupational Therapist
Rehab Resources

Linda Tuchman
Personnel Development/ICC
WI Personnel Devel. Project

Norma Vrieze
Program Coordinator
St. Croix Co. Birth to 3

Rita Young
SLP/Program Coordinator
RCS--Early Intervention Prog.

Karen Wollenburg
RESource Technical Assistance Project
CESA 5

Appendix 2

Diagnosed Conditions and Atypical Development Committee Members:

• Sonja Blihovde, Statewide Genetics Consultant
  Wisconsin Department of Health and Family Services
  Division of Pubic Health, Bureau of Family and Community Health
• Barbara Coyle, RN BSN COHN-S
  Wisconsin Department of Health and Family Services
  Occupational/Reproductive Health Nurse Consultant/Bureau of Occupational Health
  Division of Public Health
• Sharon Fleischfresser, MD, MPH CSHCN Medical Director
  Wisconsin Department of Health and Family Services
  Division of Public Health, Bureau of Family and Community Health
• Jill Haglund, Early Childhood Consultant/Birth to 3 Liaison
  Wisconsin Department of Public Instruction
• Elizabeth Kraniak, Coordinator
  Milwaukee County Birth to 3 Program/Milwaukee Department of Human Services
• Donna Miller, Birth to 3 Program & Policy Specialist
  Wisconsin Department of Health and Family Services, Birth to 3 Program
• Linda Tuchman, Director
  Wisconsin Birth to 3 Personnel Development Project/RESource
  Waisman Center, Madison, WI
• Michelle E. Urban, MD, Chief Medical Officer Long Term Care,
  Division of Health Care Financing, Department of Health and Family Services
• Norma Vrieze, Coordinator
  St. Croix County Birth to 3 Program, New Richmond, WI

Medical Consultants

• Philip Giampietro, MD, PhD, FACMG
  Medical Genetics
  Marshfield Clinic
• Frank R. Greer, MD
  Professor of Pediatrics
  Department of Pediatrics
  University of Wisconsin Medical School, Madison
• Christina Iyama, MD
  Associate Professor/Developmental Pediatrician
  Department of Pediatrics
  University of Wisconsin Medical School & Waisman Center
• Richard Pauli, MD, PhD
  Professor/Medical Genetics
  Department of Pediatrics
  University of Wisconsin Medical School & Waisman Center
• Andy Paulson, Ph.D., Director
  Integrated Development Services, Madison
• William Rhead MD, PhD
  Professor/Medical Genetics
  Medical College of Wisconsin, Milwaukee
• Mark D. Simms, MD, MPH
  Professor of Pediatrics
  Department of Pediatrics
  Medical College of Wisconsin, Milwaukee

Appendix 3

Basic principles of assessment for infants and young children

ZERO TO THREE; National Center for Infants, Toddlers, and Families, with the support of the A. L. Mailman Foundation, convened a work group of clinicians, researchers, and parents representing the state-of-the-art knowledge base for assessing infants and young children. The work group took on the task of formulating the basic principles of assessment for infants and young children. It attempted to articulate:

1. Principles that clarify what constitutes an appropriate assessment; and
   • Assessment must be based on an integrated developmental model
   • Assessment involves multiple sources of information and multiple components
   • An Assessment should follow a certain sequence
   • The child’s relationship and interactions with his or her most trusted caregiver should be the cornerstone of an assessment
   • An understanding of sequences and timetables in typical development is essential as a framework for the interpretation of developmental differences among infants and toddlers
   • Assessment should emphasize attention to the child’s level and pattern of organizing experience and to functional capacities, which represent an integration of emotional and cognitive abilities.
   • The assessment process should identify the child’s current competencies and strengths, as well as the competencies, which will constitute developmental progression in a continuous growth model of development.
   • Assessment is a collaborative process
   • The process of assessment should always be viewed as the first step in a potential intervention process
   • Reassessment of a child’s developmental status should occur in the context of day-to-day family and/or early intervention activities
2. Current assessment practices that are at odds with state-of-the-art understanding of development in infancy and childhood and that should be avoided.
   • Young children should never be challenged during assessment by separation from their parents or familiar caregivers
   • Young children should never be assessed by a strange examiner
   • Assessments that are limited to areas that are easily measurable, such as certain motor or cognitive skills, should not be considered complete
   • Formal tests or tools should not be the cornerstone of the assessment of an infant or young child

Appendix 4

DEC Recommended Practices: Assessment

Professionals and families collaborate in planning and implementing assessment.

• A1 Professionals provide families with easy access by phone or other means for arranging initial screening and other activities.
• A2 Professionals ensure a single point of contact for families throughout the assessment process.
• A3 Families receive a written statement of program philosophy regarding family participation in assessment planning and activities.
• A4 Professionals meet and collaborate with families to discuss family preferences and reach consensus about the process, methods, materials, and situations of assessment that will meet the child’s needs best.
• A5 Professionals solicit information from families regarding the child’s interests, abilities, and special needs.
• A6 Professionals review, with parental consent, agency information about the child and family.
• A7 Professionals and families identify team members and the team assessment style to fit best the needs and goals of the child and family.
• A8 Families participate actively in assessment procedures.
• A9 Families choose their roles in the assessment of their children (e.g., assistant, facilitator, observer, assessor).
• A10 With each family’s agreement, professionals help families identify their resources, concerns and priorities related to their child’s development.
• A11 Professionals, families, and other regular caregivers work as equal team members for purposes of assessment (i.e., give equal priority to family/caregiver’s observations and reports, discuss assessment results, reach consensus about the child’s needs and programs).
• A12 Program administrators encourage the use of assessment procedures that ensure consultations and collaboration among families and professionals (e.g., the whole team discusses qualitative and quantitative information and negotiates consensus to make decisions).

• A13 Professionals use multiple measure to assess child status, progress, and program impact and outcomes (e.g., developmental observations, criterion/curriculum-based, interviews, informed clinical opinion, and curriculum-compatible norm-referenced scales).
• A14 Professionals choose materials and procedures that accommodate the child’s sensory, physical, responsive and temperamental differences.
• A15 Professionals rely on materials that capture the child’s authentic behaviors in routine circumstances.
• A16 Professionals seek information directly from families and other regular caregivers using materials and procedures that the families themselves can manage to design IFSP/IEP goals and activities.
• A17 Professionals assess children in contexts that are familiar to the child.
• A18 Professionals assess children after they have become familiar to the child.
• A19 Professionals gather information from multiple sources (e.g., families, professional team members, agencies, service providers, other regular caregivers).
• A20 Professionals assess the child’s strengths and needs across all developmental and behavioral dimensions.

Division for Early Childhood of the Council for Exceptional Children, (2000). DEC Recommended Practices in Early Intervention/Early Childhood Special Education, Sopris West, Longmont CO.

Appendix 5

Parent-Professional Partnerships

In the following suggestions for building relationships with families the terms “evaluation/assessment” are used interchangeably. However, in the Birth to 3 Program the term “evaluation” refers to the gathering of information for eligibility determination. Some assessment may be useful for making this decision. However, assessment is used to individualize intervention planning. (Refer to page 6 for more discussion.)

Building Parent-Professional Partnerships

Pre-Evaluation/Assessment:

• Parental consent must be received in writing prior to initial evaluation/assessment.
• Explain the process/procedural safeguards.
• Ask about the need for an interpreter if the family's first language is not English.
• Suggestions are offered to the family about how they might prepare for assessment.
• Determine location; if center-based, discuss things to bring (e.g. toys, clothes, snack).
• Time options (best for child and family) are discussed.
• Discuss possible roles for family and how they wish to participate.
• Parents may be asked to think about goals/outcomes/dreams. The McGill Action Planning System (Forest & Lusthaus, 1990) is an example of a process to assist parents in preparing for the evaluation or assessment.
• Parents may fill out pre-assessment surveys in areas of concern.
• Parents are asked if they want others (e.g. advocate, friend, relative) involved in evaluation/assessment or at the meetings.
• Parents might be asked if there are other settings that their child should be observed in.
• Ask parents to describe their child's preferences regarding materials (e.g., toys, snacks).
• Ask parents how they feel their child might be engaged to elicit his or her best behavior, e.g., structuring the environment, presenting toys or tasks (motor, visual).
• Elicit parents' concerns and preferences for the evaluation.
• Discuss who will be involved in evaluation/assessment and why.
• Ask parents if siblings will be at the evaluation/assessment and whether the parents would like child-care arranged for the sibling.
• If parents ask questions to which the professional doesn't have answers, explain how the evaluation/assessment might answer the questions or that you will try to find out from other sources. However, be prepared to acknowledge that sometimes the answer is not known.
• Ask parents specifically about what questions they might have about their child's development.
• Discussions with parents at this stage can occur in a variety of settings, and information can be gathered through a variety of formats.

Evaluation/Assessment:

• Parents' preferences for time, location, participation are respected.
• Parents and professionals discuss the evaluation/assessment protocol and how it addresses the parent's concerns.
• Test/instruments/methods are explained as presented.
• Professional/facilitator checks with parents as to whether the child's behavior is typical.
• Prior to administering a standardized test, the parent's role is explained to maintain standardization.
• Parents are encouraged to ask questions.
• Parents' opinions are sought if the child's state indicated the need for a change in tasks or a break, etc.
• Jargon and acronyms, if used, are explained.
• "People first" language is used; for example, a report would refer to "a child with Down syndrome" rather than "a Down syndrome child."

Post-Evaluation/Assessment:

• Parents are asked if they feel the evaluation was valid. If not, why? What was not observed or elicited?
• Immediate feedback regarding the evaluation is provided to the extent possible.
• A positive approach focusing on strengths is taken rather than focusing on deficits.
• The parents' concerns are clearly addressed, even if there are not answers to all the questions.
• Ask parents how they would like to have feedback/staffing conducted, e.g., one person talk, others support, or answer questions. What level of detail (test scores, Standard Scores, age equivalency) would parents like?
• Use visual/graphic information rather than just words.
• No jargon is used unless it is explained.
• Reports are written in "people first" language.
• A "Circle of Support" might be used rather than traditional staffing (Mount & Zwernik, 1988)
• Parents are asked about next steps. They are asked if and when they would like to meet with the team or specific team members to follow up on issues that are not resolved.
• Parents are invited to speak first and are encouraged to ask questions and make comments.
• Ask parents about additional questions and if there were things discussed that were not clear or do not reflect their child as they see him or her.
• Discuss with parents when they will receive written reports.
• Provide the parents with one or two concrete suggestions related to their concerns.

Reprinted from Partnerships in Early Intervention: A Training Guide on Family-Centered Care, Team Building, and Service Coordination by P. Rosin, A. Whitehead, L. Tuchman, G. Jesien, & A. Begun, 1993 Waisman Center, Early Intervention, University of Wisconsin-Madison.

Appendix 6

Varying Approaches to Assessment

When assessing the skills of young children, from birth to three years, different modes of obtaining children skills can occur along the continuum from structured formats to open-ended approaches. A norm-based assessment compares a child’s performance to other children his/her chronological age. One is able to obtain a child’s age level as well as a standard score. A standard score enables one to compare the performance of the targeted child on different measures. From this comparison, an educator can describe the strengths and weaknesses of a child using different tests. Examples of these norm-based assessments are: Bayley Scales of Infant Development-II, Battelle Developmental Inventory, etc.

In contrast, a curriculum-based assessment has the advantage of determining how children are progressing along the curriculum. What is being assessed is what is being taught. Often in the birth-to-three population, typical developmental milestones are being determined. Yet, curriculum-based assessment could contain individualized objectives focusing on a child’s particular needs, such as demonstration of sign language in order to request an object, communicating a simple two-word sentence using a communication board, etc.

A curriculum-based assessment has the advantage of one being able to use alternative materials. With a standardized assessment, one is expected to use the test procedures and materials, which come with the assessment tool. A curriculum-based assessment does have the flexibility in use of materials being used and the types of skills which could be assessed. Unfortunately, a curriculum-based assessment does not give an educator standard scores, so the results are not comparable across tests. Rather, curriculum-based assessment is most useful for program planning. An example of a curriculum based assessment is the Carolina Curriculum for Infants and Toddlers with Special Needs (Second Edition) (Johnson-Martin, Jens, Attermeir, & Hacker, 1991).

Another assessment approach which is beneficial for program planning is process-oriented assessment. One is able to determine how a child approaches a task, which will then assist the teaching techniques and skills to emphasize with the child. For example, a child could perform a Piagetian object permanence task. How the child is able to solve the “problem-solving” task will determine at what Piagetian stage the child is functioning. The Ordinal Scales of Psychological Development by Uzgiris and Hunt (1975) is one example of a process-oriented assessment.

Process-oriented assessments could include a child’s reaction to a humorous event, such as reacting to a slapstick humorous event. If a child with a severe level of physical involvement responded to this type of humor, one could conclude that the child have an intact cortex and a social problem-solving skill of about one year. This stimulus event refers to the use of information processing paradigms in which children develop a familiarity with a set of objects/stimuli and then immediately notice a change in the events (novelty) by about 10 weeks of age. One can conclude that the child is demonstrating rudimentary evidence of classification.

A fourth approach to assessment is the use of ecological assessment, in which an evaluator determines a child’s skills in his/her typical environment. The educator determines which characteristics are available to child and then is able to attach a qualitative descriptor along a continuum such as most favorable to least favorable. Caldwell and Bradley (1978) developed the Home Observation for Measurement of the Environment on which one can record the presence and frequency of various types of adult behavior, events, and objects in the home.

An approach focusing on the parent-child relationship, the interactive assessment, focuses on the transactional nature of this dyad. The Parent Behavior Progression by Rose Bromwich (1979) includes observational items including the frequency and the quality of the behaviors of both the child and his/her parent. This unique type of assessment enables one to determine the child’s contribution to the relationship as well as the parent’s influence on the relationship.

Also, educators have found that play-based assessment can enable an educator to determine a child’s hypothesized level of functioning in varying developmental domains. One is able to ascertain the child’s level of symbolic play. A wide range of typical environments could be used for play-based assessment. Unfortunately, one cannot obtain standard scores for comparison across tests. Yet, the results could facilitate effective programming.

Patricia Caro, Ph.D.

Appendix 7

Evaluation Instruments – Some Advantages and Disadvantages

HFS 90 allows both norm and criterion-referenced instruments to determine eligibility.

Norm-referenced Instruments – Advantages

• Useful for its intended purpose
• Eligibility
  • Can interpret the scores in a standard way
  • Consistent eligibility
• Often multi-domain
• Simplify evaluation
• Can minimize resources up front
• Lends itself to monitoring progress
• Standard for most criterion-referenced tools

Norm-referenced Instruments – Disadvantages

• Few tools for age group
• May not be normed for populations on which used
• Non-standardized results can be misinterpreted as norm-referenced results (e.g. age equivalents)
• May not include adjustment for prematurity
• Deficit focus
• Families report controlled administration and comparative outcomes difficult
• Limited information about each stage of development
• May miss important developmental tasks
• May not capture functional application of skills
• Limited information for intervention

Criterion-referenced Instruments – Advantages

• Useful assessment information for intervention
• Administration can vary to capture functional application of tasks in natural setting
• Focus on strengths
• Can include several tasks at varying stages of development
• Can be linked to curriculum/intervention
• Usually derived from standardized tests
• Validates good understanding of child development and observations

Criterion-referenced Instruments – Disadvantages

• Results are not easy to interpret relative to other tests
• May include limited description of tasks
• Relies on child development knowledge and observations of administrator
• May require more than one administration
• Age ranges difficult to use to determine eligibility
• May not provide information for interventions within family routines and activities