Department of Human Services Part H Early Intervention Bureau (217) 782-1981 December 1997

Reprint permission granted by Nancy Bennett Legal Counsel Department of Human Services

Forward
Introduction
Parental Consent
Prior Notice
Examination of Records
Confidentiality of Information
Individual Child Complaints
Surrogate Parents
Flow Chart of the Process
Glossary
For More Information

FORWARD
Infant/Toddler and Family Rights under IDEA for the Early Intervention System describes your child's and family's rights, as defined by the Early Intervention program of the federal law - Individuals with Disabilities Education Act (IDEA). IDEA includes provisions for early intervention services for eligible children starting at birth.

Because this document is an official notice of your rights under federal regulation, some terms may be unfamiliar to you. For this reason, some words are defined where they are used in the document and others are defined in the glossary.

The service coordinator working with your family can suggest additional materials to help you understand your rights. He/she can also suggest ways that you and other family members can be partners with professionals to help meet the developmental needs of your child.

Note: Illinois acknowledges and thanks the early intervention systems in the states of South Dakota and Virginia for the use and adaptation of their materials.

INTRODUCTION
The Illinois Early Intervention Services System is a program designed to maximize family involvement and provide explicit parental consent in each step of the process from the determination of eligibility through service delivery. Safeguards have been established to protect parents and children. Parents need to be informed about these safeguards so they have a leadership role in services to their children. Participation in the Illinois Early Intervention Services System for infants and toddlers is voluntary for you and your family.

The general rights you have as a parent include:

• The right to a multidisciplinary evaluation and assessment and the development of an Individualized Family Service Plan (IFSP) within forty-five (45) calendar days from referral for evaluation;
• The right, if eligible under IDEA, to all appropriate early intervention services¹ for your child and family as addressed in an IFSP;
• The right to evaluation, assessment, IFSP development service coordination and procedure safeguards at no cost. You may be charged for other early intervention services on a sliding fee schedule. However, your inability to pay will not prevent your child or your family from receiving early intervention services;
• The right to refuse evaluations, assessments, and services;
• The right to be invited to and participate in all meetings in which a decision is expected to be made regarding a proposal to change the identification, evaluation, or placement of your child or the provision of services to your child or family;
• The right to receive written timely notice before a change is proposed or refused in the identification, evaluation, or placement of your child, or in the provision of services to your child or family;
• The right to receive services in your child's natural environment to the extent appropriate;
• The right to maintenance of the confidentiality of personally identifiable information;
• The right to review and, if appropriate, correct records; and
• The right to an impartial hearing to resolve parent/provider disagreements.

These rights include:

• Parental Consent
• Prior Notice
• Examination of Records
• Confidentiality of Information
• Individual Child Complaints
• Surrogate Parents

PARENTAL CONSENT

Native Language, where used with reference to persons of limited English proficiency, means the language or mode of communication normally used by the parent of an eligible child.

Consent means that: 1) you have been fully informed of all information relative to the activity for which consent is sought, in your native language or other mode of communication; 2) you understand and agree in writing to the carrying out of the activity for which your consent is sought, and the consent describes that activity and lists the records (if any) that will be released and to whom; and 3) you understand that the granting of consent is voluntary on your part and may be revoked at any time.

Your written consent must be obtained before: 1) conducting the initial evaluation and assessment of your child; and 2) initiating the provision of early intervention services. If you do not give consent, the Illinois Early Intervention Services System shall make reasonable efforts to ensure that you:

1. Are fully aware of the nature of the evaluation and assessment or the services that would be available; and
2. Understand that your child will not be able to receive the evaluation and assessment or services unless consent is given.

If you do not give your consent for the initial evaluation, the Early Intervention Services System may initiate an impartial hearing for resolving parent/provider disagreements, including impartial due process procedures.

In addition, as the parent of a child eligible under the IDEA Early Intervention Program, you may determine whether your child, or other family members will accept or decline any early intervention services under this program in accordance with State law. You may also decline such a service after first accepting it, without jeopardizing other early intervention services under this program

Personally Identifiable means that information includes: 1) the name of your child, your name, or other family member; 2) the address of your child 3) a personal identifier, such as your child's or your child's social security number; or 4) a list of personal characteristics or other information that would make it possible to identify your child with reasonable certainty.

Finally, you have the right to written notice of and written consent to the exchange of any personally identifiable information collected, used, or maintained under the IDEA Early Intervention Program, among agencies consistent with Federal and State laws.

(See section on Confidentiality of Information.)

PRIOR NOTICE
Written prior notice must he given to you a reasonable time before the Illinois Early Intervention Services System² proposes, or refuses, to initiate or change the identification, evaluation, or placement of your child, or the provision of appropriate early intervention services to your child and your family.

The notice must be sufficient in detail to inform you about:

1. The action that is being proposed or refused;
2. The reasons for taking the action; and
3. The procedural safeguards that are available under the program.

1. Written in language understandable to the general public and provided in your native language unless it is clearly not feasible to do so.
2. If your native language or other mode of communication is not a written language, the public agency, or designated service provider shall take steps to insure that:
   1. The notice is translated orally or by other means to you in your native language or other mode of communication;
   2. you understand the notice; and
   3. there is written evidence that the requirements of this section have been met.
3. If you are deaf, blind, illiterate, or have no written language, the mode of communication must be that normally used by you (such as sign language, Braille, or oral communication).

EXAMINATION OF RECORDS
In accordance with the Confidentiality of Information procedures in this notice, you must be afforded the opportunity to inspect and review records relating to evaluations and assessments, eligibility determinations, development and implementation of IFSPs, individual complaints dealing your child, and any other area under the IDEA Early Intervention Program involving records about your child and your family.

CONFIDENTIALITY OF INFORMATION
The Illinois Early Intervention Services System provides you the opportunity to inspect and review any records relating to your children which are collected, maintained or used by the System under IDEA. The System complies with a request without unnecessary delay and before any meeting regarding an IFSP or hearing relating to identification, evaluation, or placement of your child, and in no case more than forty-five (45) days after the request has been made.

The right to inspect and review records includes:

The following definitions used in this section: 1) "Destruction" means physical destruction or removal of personal identifiers from information that is no longer personally identifiable; 2) "Educational Records" or "records" means the records covered by Family Educational Rights and Privacy Act (FERPA); and 3) "Participating agency" means any agency of institution which collects, maintains, or uses personally identifiable information, or from which information is obtained, under this part.

1. The right to a response from the System to reasonable requests for explanations and interpretations of the record;
2. The right to request that the System provide records containing the information if failure to provide those copies would effectively prevent you from exercising the right to inspect and review the records; and
3. The right to have someone representing you inspect and review the record.

Each System participant shall keep a record of parties obtaining access to early intervention records collected, obtained, or used under this part (except access by parents and authorized employees of the System), including the name of the party the date access was given, and the purpose for which the party is authorized to use the record.

If any record includes information on more than one child, you have the right to inspect and review only the information relating to your child or to he informed of that specific information.

The Illinois Early Intervention Services System shall provide you, on request, a list of the types and locations of records collected, maintained, or used by the System.

The System may charge a fee for copies of records which are made for parents under this part if the fee does not effectively prevent you from exercising your right to inspect and review those records. The System may not charge a fee to search for or retrieve information under the Early Intervention Program of IDEA.

If yon believe that in information in records collected, maintained, or used under the Early Intervention Program of IDEA is inaccurate or misleading, or violates the privacy or other rights of your child or Family, you may request the System participant which maintains the information to amend the information.

1. The System decides whether to amend the information in accordance with the request within a reasonable period of time of receipt of the request.
2. If the System decides to refuse to amend the information in accordance with the request, you will be informed of the refusal and be advised of the right to a hearing.

If, as a result of the hearing, the System decides that the information is inaccurate, misleading, or otherwise in violation of the privacy or other rights of the child, it amends the information accordingly and will inform you in writing.

1. If, as a result of the hearing, the System decides that the information is not inaccurate, misleading, or otherwise in violation of the privacy or other rights of the child, you will be informed of your right to place in the records of your child a statement commenting on the information and setting forth any reasons for disagreeing with the decision of the System.
2. Any explanation placed in the records of the child under this section must:
   1. be maintained by the System as part of the records of the child as long as the record or contested portion (that part of the record with which you disagree) is maintained by the System; and
   2. if the records of the child or the contested portion is disclosed by the System to any party, the explanation must also be disclosed to the party.

Parental consent must be obtained before personally identifiable information is:

1. disclosed to anyone other than officials of the Illinois Early Intervention Services System participants collecting or using information tinder the Early Intervention Program of IDEA, subject to section (2) at the bottom of page 6; or
2. used for any purpose other than meeting a requirement tinder IDEA.

• Each System participant protects the confidentiality of personally identifiable information at collection, storage, disclosure, and destruction stages;
• One official of each System participant assumes responsibility for insuring the confidentiality of any personally identifiable information;
• All persons collecting or using personally identifiable information receive training or instruction regarding Illinois' policies and procedures under IDEA and FERPA;
• Each System participant maintains, for public inspection, a current listing of the names and positions of those employees within the agency who have access to personally identifiable information;
• The System informs parents when personally identifiable information collected, maintained, or used under this part is no longer needed to provide services to the child; and
• The information is destroyed, at the request of the parents. (Permanent records of child's name address, phone number may be maintained.)

INDIVIDUAL CHILD COMPLAINTS
If you disagree with the Illinois Early Intervention System on the 1) identification, 2) evaluation, 3) placement of your child, or 4) provision of appropriate early intervention services to your child or family you have the right to a timely administrative resolution of your concerns.

Illinois has elected to offer mediation as a possible alternative to resolving disagreements. Mediation is viewed as voluntary and freely agreed to by both parties. Parents/providers are not required to use a mediation process. Mediation may not be used to deny or delay your rights under IDEA. The complaint must be resolved, and a written decision made, within the 30-day timeline.

Mediators and hearing officers are impartial according to the following:

1. have an impartial person must he appointed to implement thee parent/provider disagreement (complaint resolution) process in this section. The person must:
   1. have knowledge about the provisions of the Early Intervention Program of IDEA, the needs of, and services available for eligible children and their families; and
   2. perform the following duties:
      1. listen to the presentation of relevant views about the complaint/disagreement, examine all information relevant to the issues, and seek to reach a timely resolution of the disagreement;
      2. provide a record of the proceedings, including a written decision (hearing only); and
      3. provide the parents the means of filing a complaint.
2. As used in this section, "impartial" means that the person appointed to serve as a hearing officer (or mediator) of the due process proceeding to implement the complaint resolution process--
   1. is not an employee of any agency or program intervention involved in the provision of early services or care of the child; and
   2. does not have a personal or professional interest that would conflict with his or her objectivity in implementing the process.

Under the Early Intervention Program of IDEA, you are afforded the rights listed as follows in any administrative due process proceedings carried out under this section.

1. To be accompanied and advised by counsel and by individuals with special knowledge or training with respect to early intervention services for children eligible under IDEA;
2. To present evidence and confront, cross examine, and to compel the attendance of witnesses;
3. To prohibit the introduction of any evidence at the proceedings that has not been disclosed to you at least five days before proceeding;
4. To obtain a written or electronic verbatim (word by word) transcription of the proceeding; and
5. To obtain written findings of fact and decisions.

No later than 30 days after the receipt of your disagreement (complaint), the due process impartial proceeding required under this section is completed and written decision is mailed to each of the parties.

Any party aggrieved by the findings and decision of the due process hearing regarding an administrative complaint has the right to bring a civil action in State or Federal court under Section 680(1) of the Act.

During the pendency (time period) of any proceeding involving a parent/provider disagreement (complaint), unless a local service agency and you otherwise agree, your child and family will continue to receive the appropriate early intervention services currently being provided.

If you and the provider's disagreement (complaint) involves an application for initial services, your child and family must receive those services that are not in dispute.

To file all individual child complaint, call:

SURROGATE PARENTS
The rights of children eligible under the Early Intervention Program of IDEA are protected if:

1. No parent can be identified;
2. The System, after reasonable efforts, cannot discover the whereabouts of a parent;
3. Legal custody of the child and all parental rights and responsibilities for the care and custody of the child have been terminated by Court order or permanent entrustment agreement pursuant to applicable law; or
4. The child is under the legal responsibility of the Illinois Department of Children and Family Services.

1. Surrogate parents are selected in ways permitted by Illinois law.
2. A person selected as a surrogate:
   1. Has no interest that conflicts with the interest of the child he or she represents;
   2. Has knowledge and skills that ensure adequate representation of the child;
   3. Is not an employee of any agency involved in the provision of early intervention services to the child. A person who otherwise qualifies to be a surrogate parent under this section is not an employee solely because he or she is paid by a public agency to serve as a surrogate parent; and
   4. Resides in the same general geographic area as the child, whenever possible.

1. The evaluation and assessment of the child;
2. Development and implementation of the child's IFSPs, including annual evaluations and periodic reviews;
3. The ongoing provision of early intervention services to the child; and
4. Any other rights established under the Early Intervention Program of IDEA.

Division of Program Compliance
Illinois State Board of Education
100 North First Street, E-228
Springfield, IL 62777-0001

217/782-5589

FLOW CHART OF THE PROCESS

IDENTIFICATION Child is identified as needing an evaluation. EVALUATION and ASSESSMENT ELIGIBILITY DETERMINATION IFSP SERVICES PROVIDED

PARENT PERMISSION If you do not give your consent for the initial evaluation, the local Child and Family Connections may initiate an impartial hearing for resolving parent/provider disagreements including impartial due process procedures. PARENT PERMISSION You may determine whether your child, or other family members will accept or decline any early intervention services under this program in accordance with State law. You may also decline such a service after first accepting it, without jeopardizing other early intervention services under this program

NOTE: If you disagree with the Illinois Early Intervention Services System on the 1) identification 2) evaluation, 3) placement of your child, or 4) provision of appropriate early intervention services to your child or family, you have the right to a timely administrative resolution of your concerns. Confidentiality rules apply throughout the entire process.

GLOSSARY

Assessment:

The ongoing procedures used by appropriate qualified personnel throughout the period of a child's eligibility under this part to identify--

1. The child's unique strengths and needs and the services appropriate to meet those needs;
2. The resources, priorities and concerns of the family and the supports and services necessary to enhance the family's capacity to meet the developmental needs of their infant or toddler with a disability; and
3. The nature and extent of early intervention services that are needed by the child and the child's family to meet those needs in a. and b. above.

Disclosure:

To permit access to or the release, transfer, or other communication of education records, or the personally identifiable information contained in those records, to any party, by any means, including oral, written, or electronic means.

Evaluation:

The procedures used by appropriate qualified personnel to determine a child's initial and continuing eligibility under this part, consistent with the definition of infants and toddlers with disabilities in §303.15, including determining the status of the child in each of the deve1opmenta1 areas.

Family:

Defined according to each family's definition of itself.

Family Assessment:

Identification of the family's resources, priorities and concerns relative to enhancing the development of the child.

IFSP:

Individualized Family Service Plan (IFSP): A written plan for providing early intervention services to eligible children/families that:

1. Is developed jointly by the family and appropriate qualified personnel providing early intervention services;
2. Is based on the multidisciplinary evaluations and assessment of the child and the assessment of the strengths and needs of the child's family, as determined by the family and as required in 34 CFR 303.322; and
3. Includes all services necessary to enhance the development of the child and the capacity of the family to meet the special needs of the child.

Mediation:

A voluntary process freely agreed to by parents and providers to attempt to resolve IDEA Early Intervention Program disagreements. Neither party is required to participate in the mediation process and both parties must approve any agreement reached. Mediation may not be used to deny or delay your right to an impartial hearing.

Multi-disciplinary:

The involvement of two or more disciplines or professions in the provision of integrated and coordinated services including evaluation and assessment activities in §3O3.322 and development of the IFSP in §3O3.342.

Natural Environment:

Settings that are natural or normal for the child's age peers who have no disability.

Parent:

A parent, a guardian a person acting as a parent of a child, or a surrogate parent who has been appointed in accordance with §303.406.

NOTE: The term "parent" has been defined to include persons acting in the place of a parent, such as a grandparent or stepparent with whom a child lives, as well as persons who are legally responsible for the child's welfare.

1. In Illinois, "appropriate early intervention services" are determined through the IFSP process. The IFSP must include a statement of the specific early intervention services necessary to meet the unique needs of the child and the family to achieve the outcomes identified in the IFSP. Federal regulations define early intervention services as services that " are designed to meet the developmental needs of each child eligible under this part and the needs of the family related to enhancing the child's development."
2. The Illinois Early Intervention Services System or System includes, but is not limited to, the following: local Child and Family Connections, agencies, programs, local public and private service providers and service coordinators.