4279 - Illinois Early Intervention Program: A Guide for Families July 2016

State of Illinois
Department of Human Services

IDHS 4279 (pdf)

A Guide for Families
The Illinois Early Intervention Program

Acknowledgments

The Early Intervention Clearinghouse staff thanks the many parents as well as the parent liaisons and service coordinators of the Child and Family Connections offices and the developmental therapists who volunteered their help in the revision of The Illinois Early Intervention Program: A Guide for Families. We also extend our warmest appreciation to our colleagues in the Bureau of Early Intervention in the Illinois Department of Human Services for their support of this new edition.

We wish all families success on their journey through the first three years of their young child's life. We hope that this guide provides help as you move through the Illinois Early Intervention Program.

Susan A. Fowler, Director

Illinois Early Intervention Clearinghouse

The Illinois Early Intervention Program

A Guide for Families

Susan A. Fowler

July 2016

Illinois Early Intervention Clearinghouse

Early Childhood and Parenting Collaborative

Department of Special Education

University of Illinois at Urbana-Champaign

Children's Research Center

51 Gerty Drive

Champaign, IL 61820-7469

Table of Contents

SECTION ONE

Welcome to the Illinois Early Intervention Program! ......................................... 1

Developmental Milestones From Birth to Age 3 .......................................... 2

Why Are Early Intervention Services Important? ....................................... 3

One Family's EI Story .......................................................................................... 3

What Are Early Intervention (EI) Services .................................................... 4

SECTION TWO

Is Your Child Eligible for the EI Program? ............................................................. 5

Step 1: Contact Your Local CFC Office .......................................................... 5

Step 2: Meet With a Service Coordinator ...................................................... 5

Step 3: Participate in the Evaluation and Assessment ................................. 5

Step 4: Find Out Whether Your Child Is Eligible ......................................... 7

Determining Eligibility for EI Services ............................................................ 8

SECTION THREE

Participating in Early Intervention Services ......................................................... 9

Step 1: Develop the Individualized Family Service Plan (IFSP) ................ 9

Step 2: Participate in Services ..........................................................................11

Things I Want You to Know About My Child .............................................12

Step 3: Review the IFSP Every Six Months ..................................................15

What Takes Place During a Typical EI Session? ........................................16

SECTION FOUR

Paying for EI Services ................................................................................................17

SECTION FIVE

When Is It Time to Leave the EI Program? .........................................................19

SECTION SIX

What Are Your Rights? .............................................................................................20

SECTION SEVEN

Questions Frequently Asked by Families .............................................................23

APPENDICES

Appendix A: Glossary ...............................................................................................25

Appendix B: Principles of Early Intervention .....................................................29

Appendix C: Principles of Natural Environments .............................................30

Appendix D: Sample Early Intervention Contact Note ...................................31

Appendix E: Notes From Our IFSP Meeting ......................................................32

"Parenting my premature baby was wonderful and challenging at the same time. My early intervention team helped me find more of the wonderful'

in being a parent by showing me different ways to help my baby move and play and eat and sleep. My confidence grew by miles, as my baby grew by inches and pounds, thanks to their support! "

Name Phone
My Local CFC
Service Coordinator
Parent Liaison
Providers
Helpful Community Resources
Evaluation Date
IFSP Meeting Date

SECTION ONE

Welcome to the Illinois Early Intervention Program!

This guide is for you, your child's primary caregiver. You play a critical role in your child's early years by knowing your child best, supporting your child's development daily, and caring about your child's future. This guide explains the EI program services and eligibility. It describes your role in planning services as a member of your child's team. It also discusses your rights and answers questions that many families ask. We hope the guide will answer your questions and help you make decisions that will give you and your child a good start. In Illinois, early intervention services are provided in your local community through Child and Family Connections (CFC) offices. The Illinois Early Intervention (EI) Program provides a variety of services for families of an infant or toddler with a disability or a developmental delay. The program is based on the principle that all families help their children learn and grow. Families with a child with special needs may need support to figure out the best ways to help their child develop. Families are partners with professionals in the EI program to help their child have the best start in life. (See Appendix B for the principles of early intervention.)

How Do I Find My Local CFC Office?

EI services are provided through your local Child and Family Connections (CFC) office. To find your local office, call (800)323-4769 or visit the IDHS website at www.dhs.state.il

Why Do Some Words Appear in Bold Type?

Bold words appear in Appendix A, a glossary that lists and defines many of the terms used in early intervention.

Developmental Milestones From Birth to Age 3

The milestones listed below are typical for young children. Please remember that every child is unique- growing and developing at different rates. Most of the time differences between children of the same age are nothing to worry about. But for one child in 10, the difference can be related to a developmental delay.

For more information or to make a referral to the EI Program, call your local CFC office. For the number in your area, call (800) 323-4769.

At age 1 month, most children can . . .

  • Raise their heads slightly when lying on their stomachs
  • Briefly watch objects
  • Make "noise in throat" sounds
  • Pull away from a cloth or blanket on their faces

At age 3 months, most children can . . .

  • Lift their heads and chests when lying on their stomachs
  • Show vigorous body movement
  • Follow a moving person with their eyes
  • Recognize a bottle or breast
  • Smile when someone speaks to them

At age 6 months, most children can . . .

  • Sit with minimal support
  • Roll from their backs to their stomachs
  • Turn to locate and identify sounds
  • Transfer objects from hand to hand and from hand to mouth
  • Respond to friendly speech with a smile or coo

At age 12 months, most children can . . .

  • Pull themselves up to stand and may step with support
  • Pick things up with a thumb and one finger
  • Nod their heads to signal "yes"
  • Give affection
  • Say two or three words

At age 2, most children can . . .

  • Hand over toys upon request
  • Kick a large ball
  • Turn pages in a book (two or three at a time)
  • Ask for items by name
  • Recognize a familiar picture and know if it is upside down
  • Use two or three words together, such as "more juice"

At age 3, most children can . . .

  • Walk up stairs while holding the railing
  • Stand momentarily on one foot
  • Open doors
  • Unbutton large buttons
  • Verbalize toilet needs
  • Stack objects of different sizes

Source: Illinois Department of Human Services, Bureau of Early Intervention

https://www.dhs.state.il.us/page.aspx?item=30321

One Family's EI Story

I kept wondering if my baby was developing okay. Carson was 8 months old and still hadn't tried to roll over. He had trouble sleeping and was fussy all the time. He seemed more difficult than other babies I knew. So I talked to our pediatrician, and he referred us to the Child and Family Connections Office. They were great! They understood my concerns and listened to me. They watched me play with Carson and recommended that Carson have an evaluation by a team of specialists. I was at the evaluation and provided information and his medical records.

Afterward, we met and they told me that Carson was showing developmental delays in motor and social-emotional development. We wrote a plan for services, and my service coordinator helped me to choose a physical therapist (PT) and developmental therapist (DT). I was relieved to know I had been right to ask for help. We had PT services for almost a year, and they made a big difference in helping Carson to explore more, to roll, then crawl, and eventually walk and run. I also learned how to encourage and support his efforts and to let him try more. The developmental therapist worked with us until Carson turned 3 years old. She helped me establish routines and showed me different ways to play and connect with my son. I felt like I was part of a team. It made all the difference in the world for our family.

Why Are Early Intervention Services Important?

During the first three years, your child's brain and body are growing rapidly. Your baby will more than double in size every year. Delays are often noticed when babies miss important milestones. The reasons for your child's delay may not be obvious or ever identified. You may want to check your child's development against the list of common milestones listed on the previous page.

If your child was born early or was very small, she may need support to develop like other babies her age. If your baby was born with a disability, he may need extra help to learn and develop new skills. If your child is developing more slowly or differently, then EI can support you and your child in continuing to learn and grow. EI can also help your family and others understand your child's special strengths and gifts. Remember, your child's first three years provide a foundation for life.

What Are Early Intervention (EI) Services?

Early intervention services are designed to meet your child's needs in these areas of development:

  • Physical (how your baby moves and explores)
  • Cognitive (how your baby learns)
  • Communication (how your baby lets you know what he needs)
  • Social and emotional (how your baby engages with you and shows feelings)
  • Adaptive (how your baby uses new skills)

EI services may include:

  • Assistive technology
  • Audiology/aural rehabilitation
  • Developmental therapy/special instruction
  • Family training and support
  • Health consultation
  • Medical services (only for diagnostic or evaluation purposes)
  • Nursing
  • Nutrition
  • Occupational therapy
  • Physical therapy
  • Psychological/counseling services
  • Service coordination
  • Sign language or cued language
  • Social work
  • Speech language pathology
  • Transportation
  • Vision
  • Translation/interpretation to other languages

The delivery of these services should meet your child's and family's preferences, learning styles, and cultural beliefs.

SECTION TWO

Is Your Child Eligible for the EI Program?

What Makes My Child Eligible for Services?

Your infant or toddler (birth to 36 months) is eligible for services through the Illinois

EI program if he or she ...

  • has a significant delay in at least one area of development,
  • has a condition that is known to cause disability or delay, or
  • is at high risk for a substantial developmental delay.

Here are the steps for finding out whether your child is eligible.

Step 1: Contact Your Local CFC Office

You may call your local Child and Family Connections Office (CFC) to talk with a service coordinator about your concerns. If you need assistance finding your local CFC, call (800) 323-4769. Your doctor or child care provider may also refer you to the local office. Once you contact the CFC, they will assign a service coordinator to meet with your family and talk with you about your child's development.

Step 2: Meet With a Service Coordinator

You will meet with a coordinator who knows about EI services and who can help plan an evaluation and possible services. This first meeting is to exchange information and determine whether your child would benefit from an evaluation for services. The meeting may be called an intake meeting because you will be asked to share information about your child and family. The coordinator will ask you questions about your child's growth and development, medical history, and your daily activities (play time, meals, sleep schedules, child care). Or you may be given a checklist to identify your child's skills and strengths.

You will be asked to sign a consent form agreeing that the service coordinator may share information about your child with the EI professionals who will evaluate your child and who may help you plan for services. If you give consent, then your child can be referred for an evaluation. The evaluation is free to all families.

Step 3: Participate in the Evaluation and Assessment

You know your child better than anyone else. You notice what he is trying to do and what he does easily. You know what she likes and doesn't like. You probably know how your child learns best and when he may need help. Your knowledge makes you an important partner on your child's evaluation team. The team will include your service coordinator and at least two other EI professionals. The number of team members may vary depending on the needs of your child and will represent different disciplines (developmental therapy, physical therapy). The team will evaluate your child across five domains of development:

  • physical (how your baby moves and explores),
  • cognitive (how your baby learns),
  • communication (how your baby lets you know what he needs),
  • social and emotional (how your baby engages with you and shows feelings), and
  • adaptive (how your baby uses new skills).

Members of the team will observe your child and interact with him. They may measure your child's abilities and compare them against developmental milestones (see page 2). They may also observe and engage your child in activities to see what he can do and likes to do. They will ask you whether you have concerns about your child's development and what your expectations are. They will ask you if your child is responding in ways that you expect or if he is acting differently than siblings or other children you know. They may ask you to describe family routines, such as bath time and meal time, and how your child responds. You also will have an opportunity to share your family's priorities for your child and needs you may have in meeting those. If you need an interpreter because your first language is not English, one will be provided by the EI team for the evaluation.

Step 4: Find Out Whether Your Child Is Eligible

Your child is eligible if your child has a disability that could delay his development or if the evaluation shows that your child has a developmental delay of 30% or higher in one or more domains. After the evaluation is completed, you will notified by the CFC whether your child is eligible. You have a right to receive the evaluation report. If your child is eligible and you decide that you want your child to receive services, then you will meet to develop an Individualized Family Service Plan (IFSP). The development of the plan is free and must occur within 45 days of your child's referral to the EI program.

If your child is not eligible, then you will not develop a plan or receive services. The service coordinator may provide you with a list of resources in your community that may meet the needs of your family and child. If you have new concerns about your child's development, you may contact the CFC office any time before your child turns 3 years of age to discuss your concerns.

"The early intervention process was entirely new and a little intimidating to us. Our initial service coordinator at the CFC was great. She took time to explain all the steps in the process, she always stressed that any decisions were completely open to us, and she made sure that we were aware of all the options available to us. I felt she truly cared about our son. "

Determining Eligibility for EI Services

Step 1: Contact your CFC office with questions about your child's development

Step 2: Meet with service coordinator for intake visit (no cost)

Step 3: Sign consent or decline evaluation

Consent - Participate in evaluation and assessment (no cost)

Decline - Leave EI Program

Identify community resources that may meet the needs of your child and family

Request reevaluation (if concerns persist)

Step 4: Receive information about your child's eligibility

Is child eligible or not eligible?

Eligible - Meet to plan IFSP (no cost)

Accept or decline IFSP?

Accept - Begin Services

Not Eligible

Identify community resources that may meet the needs of your child and family

Request reevaluation (if concerns persist)

Accept or decline IFSP?

Decline -Leave EI Program

SECTION THREE

Participating in Early Intervention Services

Your EI Service Coordinator …
  • is the first point of contact in the EI system (receives referral),
  • introduces you to other CFC staff, including the parent liaison,
  • coordinates evaluations to determine eligibility for services,
  • helps families understand their roles and rights in the EI system,
  • assists the family and other EI team members in developing and implementing the IFSP,
  • contacts the family monthly while child is in EI,
  • develops and maintains the case (service) record for the child and family, and
  • assists the family in leaving EI services when the child turns 3 years old.

Families who choose to participate are included in all decisions about services. You are a member of your child's team. The first step is planning the Individualized Family Service Plan (IFSP). When you and the team finish the plan, you will sign it to indicate you agree with the services. Then services will begin. The plan will describe what services are to be delivered, how often, and by whom. Because infants and toddlers learn best through everyday experiences and interactions, many families agree to have service providers come to their home. Because of work schedules or other demands, some families have service providers come to where their child spends much of her day. This could be a child care program or the home of a friend or relative. You and your team will review your child's plan and progress at least every six months. The following section describes the service delivery process for you and your child.

Step 1: Develop the Individualized Family Service Plan (IFSP)

The service coordinator will help you to

  • identify your concerns and priorities for meeting your child's needs,
  • choose outcomes for your child and family,
  • select services to meet the outcomes, and
  • determine whether services require payment.

You should have a meeting to develop the IFSP as soon as possible but no later than 45 days from your child's referral to the program. There are no charges or costs for developing the plan.

What Is an IFSP?

The IFSP is a plan that you develop with your EI team. The plan reflects your priorities and concerns for your child. You identify the outcomes that you want for your child and your family or caregivers. These are statements that describe changes and benefits that you want to see for your child and family. You and the team also identify services for meeting these outcomes.

You might begin by asking two questions: What benefits do I want my child to receive from EI? What will be different or better for my child and family when these changes occur?

The plan will have outcomes that help your child to

  • gain and use new knowledge and skills,
  • improve social and emotional skills, and
  • use appropriate behaviors to meet his or her needs.

It will also include family outcomes. Three important outcomes include

  • understanding your child's strengths, abilities, and special needs;
  • helping your child develop and learn; and
  • knowing your legal rights regarding services for your child.

Who Should Be Involved in Developing the IFSP?

Your service coordinator will explain the IFSP process to you and set up the meeting to plan the IFSP. The coordinator

will work with you to identify a date and location that is convenient for you. You will receive a written notice confirming

the meeting. The meeting should be conducted in your primary language. You may ask for an interpreter if you communicate in a language other than English.

The meeting will include you, the service coordinator, and evaluation team. You may invite family, friends, and your child's caregivers to the meeting.

To help you prepare for the IFSP meeting, you may want to complete the worksheet "My Child's First IFSP" on pages 12 and 13. Remember that you are an equal partner in the planning. You can ask for changes to the plan. You can accept some services and decline others. You can stop services at any time. Your participation is voluntary and requires your consent.

Why Do You Sign the IFSP?

Once you and your team agree on outcomes and services for the IFSP, you will sign the plan and receive a copy of the plan. Your signature indicates that you agree with the plan. Your coordinator also will help you determine if you will pay an annual participation fee for delivery of EI services. No fees are charged to families whose income is at or below 185% of the federal poverty level (FPL). If your income is above this level, you will talk about payment options for services. (For more details, see Section 4, "Paying for EI Services.")

Step 2: Participate in Services

Who Provides EI Services?

Your service coordinator will offer you a choice of service providers who are available to provide EI services outlined in the IFSP. Your choice of providers may be limited because of availability, insurance requirements, or the unique needs of your child.

Where Are Services Delivered?

Typically, EI services are provided in the child's natural environments. This means the places where your child is most likely to spend much of his time and where young children without a disability are likely to spend time. Natural environments can be your home, child care, library, a relative's home, or other places where your family typically spends time. Natural environments allow you and your EI provider to use your daily routines to teach new skills or behaviors to your child. If these activities can fit into your child's routines, you and other caregivers are more likely to do them often with your child, even when your service provider is not with you. The key principles related to natural environments are provided in Appendix C.

What Should You Expect During an EI Visit?

You and your EI service provider should agree on a time and day to meet. At the first meeting, your provider is likely to discuss your child's current development and your questions and concerns. He or she will suggest ways that you can work with your child to achieve IFSP outcomes. Your provider will consider you or your child's primary caregiver as a partner in the delivery of EI services. This means that you will be asked to participate actively during EI visits and sessions.

MY CHILD'S FIRST IFSP
Things I Want You to Know About My Child
  1. These are things I want everyone to know about my child:
  2. These are my concerns now:
  3. This is how my child communicates with me and others:
  4. These are ways my child likes to learn new things:
  5. This is what my child does when he or she needs help:
  6. My child's normal schedule is:

Morning

Afternoon

Evening

  1. Places my child likes to go:
  2. These are things I would like my child to learn in the next 6-12 months:
  3. These are things I would like to learn in the next 6-12 months:
  4. The ways I learn best are:

How Do You Participate in EI?

Working with your EI service provider is important so you can support your child's learning and development. Your provider gathers information by talking with you and other family members or caregivers. Your provider also learns about your child's strengths and needs by observing you and your child in everyday routines. Use the "Things I Want You to Know About My Child" worksheet to guide your conversations with providers.

As a partner you can help by doing the following:

  • Get to know your EI service providers.
  • Actively take part in your child's home visits and appointments.
  • Ask your EI providers to explain the activities that they are doing with you and your child. Ask for the reasons behind the activities.
  • Share information about routines, family traditions, and culture.
  • Talk about the places that you and your child go. Include playgroups and friends' homes.
  • Describe the people you and your child enjoy being with.
  • Notice what your child is interested in.
  • Tell your EI provider about any concerns you have about your child.
  • Learn activities to promote your child's development. Include these in your daily routines. Provide lots of opportunities for your child to play and practice new skills during everyday routines-dressing, mealtimes, diaper changes.
  • Identify your family's formal and informal supports and resources. Who can you contact for help? What do you already have that you can use to support you and your child?
  • Ask for help when needed. Let family, friends, and providers know how they can help during challenging times.
  • Play with and talk to your child. She'll know she is special and loved!

What If You Can't Be at Your Child's EI Visit?

Children can receive EI services in many locations, including child care, the family home, and community locations. If you cannot be present during the EI visit, then request that the EI service provider communicate important information about the visit. For example, if your child receives speech and language therapy at his child care program, ask the EI provider and child care provider to tell you about the session. They could do this by writing you notes about the session. (See sample contact note on p. 31.) They also could videotape part of the EI visit so you can see what your child is learning and how you can help continue your child's learning. Or you could request a phone call to discuss the visit and how you can support your child.

Tell us how we are doing: Talk to your parent liaison or your service coordinator often.

How Can You Meet Other Parents in the EI Program?

Your local Child and Family Connections (CFC) office has a parent liaison who has experience with the EI service system because he or she is the parent or guardian of a child with special needs. The liaison's role is to provide information and support to families.

You can ask them to

  • provide you with information about your child's diagnosis,
  • be your advocate,
  • provide personal support that you may sometimes need, and
  • connect you with other parents.

The Early Intervention Clearinghouse (http://eiclearinghouse.org) also is a source of free information for you. You can visit the website, obtain information through the virtual library, receive newsletters, and call or e-mail with questions. An expert in EI will respond within 48 hours to your questions or requests.

Step 3: Review the IFSP Every Six Months

An IFSP can be changed. As your child grows and develops, he or she may need new or different services. The EI team can change services to better meet the needs of your child and family.

You and your IFSP team review your child's progress at least every six months. You and your team will update the plan at least once a year; however, if your needs change, you can review and change the plan more often.

To prepare for the next IFSP meeting, you may want to ask yourself the following questions:

  • Has your child made progress?
  • Do the new outcomes require different or additional services?
  • Have your priorities for your child changed?
  • What services might your child need in the future?
  • Has your child met the outcomes of the IFSP? Are new outcomes appropriate?
  • Has your family met the IFSP outcomes? Are new outcomes needed?

The purpose of the IFSP review also is to determine whether your child continues to be eligible for EI services or whether your child has met developmental milestones and no longer needs services.

"Our provider helped us along the way in early intervention. We wouldn't have known how to start without her guidance"

"Our therapist has been wonderful with my son; she looks out for him, and I feel like we've made progress with her help. She is a very caring person. "

What Takes Place During a Typical EI Session?

A typical visit for EI services usually includes most of the following actions:

  • Advance planning for the visit. The provider reviews notes and plans activities and strategies for the visit. The parent or caregiver may also like to review notes from the last meeting.
  • Arriving and greeting. The provider arrives and chats with the parent or caregiver; they identify goals for the session and get ready to start.
  • Engaging in activities that focus on outcomes. The provider and parent or caregiver work together with the young child.
  • Observing each other. The parent or caregiver may observe the provider interact with their child, and the provider may also observe the parent or caregiver and child interact and provide supportive feedback.
  • Demonstrating and practicing new activities or strategies. The provider may show the parent or caregiver new or different ways to help their child learn.
  • Sharing information and knowledge. Both the provider and parent or caregiver may have important information to share about development, services, supports, and the child's progress.
  • Documenting services provided. The provider leaves written information for the parent or caregiver about what happened during the visit. This is especially important when services are provided when a primary caregiver isn't present, such as at child care.
  • Planning activities and strategies between visits.  The provider can help the parent or caregiver think about ways to fitt the activities they have practiced into their natural daily routines. They also may identify information that the provider or caregiver might gather for the next EI visit.
  • Scheduling the next visit. To ensure that services continue without interruption, the parent or caregiver and provider schedule the next EI session and visit.

SECTION FOUR

Paying for EI Services

Families with children eligible for the Illinois Early Intervention Program often have many questions about paying for services.

What EI Services Are Free?

All evaluations and service coordination provided through the EI program are free. If your child is eligible and you enter the EI program, staff will work with you to develop and coordinate your Individualized Family Service Plan (IFSP) free of charge. If you speak a language other than English, the program will provide a free interpreter or translation service.

What Is a Family Participation Fee?

Families may pay a family participation fee for early intervention services. This fee is set each year and is based on your income, family size, and whether you have excessive out-of-pocket medical/disaster expenses. Your service coordinator can give you information on what your fee will be. If you do not wish to disclose your income, then you will pay the highest fee. Monthly statements are sent to your family indicating the monthly installment as well as the amount the system has paid for your child's services. Families never have to pay more in fees than the system pays for the services.

How Does Using My Private Insurance Help?

Private insurance can help reduce the amount the EI system pays for your child, potentially reducing your family participation fee. If you use your private insurance for services provided by the EI program, EI payments may help you meet your annual deductible. Also, you will not be billed for co-pays for EI services. Any services not covered by insurance are billed to the Illinois EI program. You should discuss your insurance and the billing process with your service coordinator.

How Does Providing Access to My Public Benefits, Such As All Kids, Help the EI Program?

The early intervention program can obtain partial reimbursement for certain services when families provide this access. This provides another potential source of revenue to the overall program. If you don't have public benefits but think you may be eligible, talk to your service coordinator about applying for All Kids. Families who do not have insurance are strongly encouraged to complete the All Kids application and to visit the Get Covered Illinois website at https://getcovered.illinois.gov/

What Does Giving Informed Consent to Use Insurance Mean?

You will be asked to sign a consent form. Signing this consent allows the Illinois EI program to contact and bill your insurance provider or All Kids for EI services.

Why Doesn't the Illinois EI Program Just Pay for Everything?

The EI program is the "payer of last resort." That means all other available funds must be used first. The EI program receives federal funds, but these don't cover the full cost of the program. The state also provides money to support the EI program. Money from private insurance and family participation fees are important supports for the program. They help the program continue to provide high-quality services to all eligible families.

For More Information

If you have additional questions, please contact your service coordinator at your local Child and Family Connections office.

SECTION FIVE

When Is It Time to Leave the EI Program?

Your child may leave EI services when your child's development improves and is no longer delayed by 30% or more. Otherwise, your child continues in the EI program until his or her third birthday. Six months before your child turns 3, you and your EI team will begin planning for a change in services. This gives you time to find out whether your child is eligible for early childhood special education services through your local school district. Not all children will qualify, and your child may require another evaluation. The Illinois State Board of Education (ISBE) is responsible for special education services for children age 3 and older. Here are the steps and your role in the process:

Step 1: Prepare your child and family for transition.

Step 2: Sign a consent form for referral to the local school district. You can accept or decline the referral. If you accept, then your consent to share information is needed.

Step 3: Attend a transition planning conference for your child.

Step 4: Participate in a school district's evaluation of your child, if needed.

Step 5: Determine your child's eligibility for special education services.

Step 6: If eligible, plan your child's IEP. If not eligible, consider other options for your child.

Evaluating Your EI Services

Shortly after leaving the EI program, you will receive a family outcomes survey from the Illinois EI Training Program. This is a very important survey, and we ask that you complete and return it as soon as possible. Your valuable responses will help the Illinois EI program learn about family experiences in the program and consider changes if needed. The survey asks about family outcomes such as (a) understanding your child's strengths, abilities, and special needs; (b) helping your child develop and learn; and (c) knowing your rights. It also asks about the helpfulness of the EI system. The survey can be completed in a variety of ways and is available in English and Spanish. Feel free contact the Illinois EI Training Program (numbers included with the survey) if you want help in completing the survey.

When I'm 3, where will I be?  A FAMILY'S TRANSITION WORKBOOK

This workbook guides Illinois families through their child's transition from Early Intervention Program services. Available at: www.isbe.net/earlychi/pdf/transition_workbook.pdf

SECTION SIX

What Are Your Rights?

The Early Intervention (EI) Program in Illinois was established by Illinois law to comply with Part C of the federal Individuals With Disabilities Education Act. IDEA includes EI services for eligible children starting at birth until their third birthday. This act defines your rights as a parent of a child who is receiving EI services.

Some of your parental rights are described briefly here. More detailed information is available in State of Illinois Infant/Toddler & Family Rights under IDEA for the Early Intervention System, available at http://eiclearinghouse.org/resources/public-awareness/famrights-idea/

Informed Consent

Informed consent means that you are giving permission for you and your child to receive EI services. You are asked to sign the IFSP document to show that you understand and agree with the plan and the services identified in it. You also will be asked to sign permissions to share information about your child and family with early intervention providers or other agencies that serve your child and family. Information can be shared only if you sign a form that identifies who will receive the information. All information should be given in the language you normally use.

Prior Written Notice

Written notice must be given to you before an agency or service provider makes a change in your child's EI services. Notice must be given in the language that you usually use. You should receive written notice of any meetings so you have reasonable time to make arrangements to attend.

Review of Records

You have the right to review any records related to your child's EI services. Records must be available to you within 10 calendar days after you request them. You may request changes in the record if the information is inaccurate or violates confidentiality. If the agency refuses to amend the records, you have the right to request a due process hearing.

Confidentiality of Records

All records of your family's EI services are confidential. Your providers will share information with each other to provide the best services for your family. The records will be shared with others only as strict privacy laws allow. When you and your child prepare to leave the EI program, you will be asked to give written consent before your records are shared with the local school district or other agency that will serve your child at age 3.

Resolution of Concerns

If you have concerns about services, or if you disagree with decisions about your child, you should discuss them with your service coordinator at the CFC. These services or decisions may have to do with identification, evaluation, assessment, placement, or the appropriateness of the services. If you are not satisfied with the result of the discussion, formal options for administrative resolution are provided in the law. These include:

1. Complaints to the state. You may file a written, signed complaint with the Illinois Department of Human Services (IDHS) if you believe that a provider has violated a law or rule regarding the Part C Early Intervention Program. The statement must contain the facts that support your complaint.

IDHS has 60 days from receiving the complaint to investigate and write a decision. During this time, IDHS may carry out an independent investigation.

IDHS's decision must include findings from the investigation, conclusions, and a reason for the final decision. If the complaint is found to be true or valid, then the decision must include procedures to correct the cause of the complaint.

2.  Mediation. If you have a disagreement with the local provider, the CFC, or IDHS, you can request mediation. Mediation is a voluntary session facilitated by a qualified mediator in a location convenient for you within 10 days after the request. The mediator's role is to help the disagreeing parties to talk and reach an agreement. The mediator cannot order an agreement. Discussions that are held during mediation are confidential. Mediation is voluntary, and you must freely agree to participate in it. The state pays for the cost of mediation. A mediation agreement records the terms agreed upon. Previously agreed on services to your child should continue during the mediation period.

3.  Due process hearing. You may request a due process hearing to resolve a complaint with your provider or CFC. If you request a due process hearing, you and your CFC have up to 30 days to resolve the complaint to your satisfaction. If you cannot do so, a due process hearing will be held.

A due process hearing is similar to a court hearing. The hearing must be held at a time and place that is reasonably convenient to you. A hearing officer listens to both sides of the disagreement. The hearing officer may not be an employee of any agency or other entity that is providing EI services for your child. At the hearing, you may bring an advocate or supporter who has special knowledge or training about your child or about children with disabilities. You also have the right to bring your child and to have the hearing open to the public.

You have the right to a copy of the record of the hearing, findings, and decisions, at no cost. The written decision must be mailed to you within 45 days after the 30-day resolution period ends. You have the right to appeal the decision.

SECTION SEVEN

Questions Frequently Asked by Families

What Questions Might I Ask My Parent Liaison?

  • What are good resources in the community for parents like me?
  • Are there community playgroups my child might be part of?
  • Can you help me connect with other parents?

How Can I Keep All the Information That I Get From My EI Providers Organized?

Some parents use a folder to keep all the reports and other documents that they receive from their CFC. They may use another folder or notebook to keep information that they receive from their service providers. Many parents identify one place at home to keep all the notes and papers. You may want to keep a calendar handy to record all your appointments and visits and may check with your parent liaison for tips on how to keep documents organized.

What Do All the Terms Used in EI Mean? Where Can I Get More Information About My Child's Disability?

Like many service programs, the EI program has many different terms and labels to describe the program, the services, and the providers. The glossary in Appendix A will help you understand terms. You may also visit the Illinois Early Intervention Clearinghouse at http://eiclearinghouse.org/. The clearinghouse is designed for families who use EI services and want to learn more. It provides a central directory of services for the state of Illinois, and it also serves as a resource providing a variety of EI information and a link to its library catalog. You can borrow books and videos (at no charge) that will support you during your time in the EI program and beyond!

What Happens If My Family Moves Outside of the CFC Region While My Child Is Enrolled in EI?

The service coordinator will transfer a copy of your child's records to the CFC office serving your new community. The family should meet with the new service coordinator within 15 days to arrange for new providers and services if the original providers are no longer available.

Does EI Provide Medical Services?

EI provides developmental services to help your child develop and learn. Medical services can only be provided for diagnostic and evaluation purposes and not for treatment.

Can I Change My Service Provider or Service Coordinator?

Yes. Some families may find that their schedules don't match that of a provider and would like a new provider who can meet at their time. Or they may prefer a different perspective and ask for a new provider. If other providers or coordinators are available, then a shift can occur following the request. In some cases, the CFC may not have staff available for immediate reassignment. If this happens, then the family should discuss what the likely time frame is for changing providers or coordinators. If they have concerns or disagreements with their EI services, the family should talk with their CFC manager. If they still have concerns, then they may want to review their rights and consider options for resolution of concerns (see page 20).

APPENDIX A

Glossary

Advocate

A person who argues for or supports an individual, a cause or a policy. Family advocates support parents and other family members in seeking and understanding services and options for early intervention.

Assessments/Evaluations

May be formal or informal. A formal initial assessment determines eligibility for services and is usually conducted in five developmental domains (see below) by a multidisciplinary team. Periodic formal assessments also take place while the child is in the Illinois Early Intervention Program. Ongoing informal assessments are used to identify the strengths and needs of the eligible child and the family's concerns, priorities, and resources related to the child.

Child and Family Connections (CFC) Offices

Twenty-five offices funded by the Illinois Department of Human Services that serve as regional points of entry to the Illinois Early Intervention Program. CFC offices responsibilities include Child Find activities, intake of families, coordination of valuation and eligibility determinations for children, oversight of the development of individualized family service plans, and ongoing service coordination, including transition to services after the child turns 3 years of age.

Cognitive

The area of development that involves thinking skills, including learning and problem-solving skills.

Developmental Age

Determined by measuring the age at which your child demonstrates various skills against the age at which those skills are considered typical. Developmental age is established though a formal assessment.

Developmental Delay

The condition of a child who is not gaining new skills at the typical age and/or is showing inappropriate behaviors for his or her age.

Disability

A physical or mental impairment that significantly limits major life activities such as hearing, seeing, speaking, walking, caring for oneself, moving, learning, or working.

Domains

The five main areas of development that address cognitive, language, social-emotional, adaptive skills, and physical skills, including hearing and vision.

Early Intervention

Specialized services provided to infants and toddlers who show signs of or are at risk for developmental delay (see above). Services are planned and implemented with the family and often a multidisciplinary team of professionals. (See also Illinois Early Intervention Program.)

Early Intervention Credential

A credential issued according to Illinois Department of Human Services rules that helps to ensure that professionals working in the Illinois EI system possess appropriate qualifications, continuously participate in professional development related to their fields, and strengthen their understanding of children ages birth to 3 with special needs.

EI Providers

Please see service providers.

Federal Poverty Level (FPL)

A measure based on family income used to determine if a person or family is eligible for assistance through various federal programs. The FPL usually changes annually.

IDEA

Please see Individuals With Disabilities Education Act of 1990 or Individuals With Disabilities Education Act (Part C).

IDHS

Please see Illinois Department of Human Services.

IEP

Please see Individualized Education Program.

Illinois Department of Human Services

The state agency that has been designated as the lead agency for the Illinois Early Intervention Program.

Illinois Early Intervention Program

A statewide, comprehensive, coordinated, interagency program that aids families who have infants and toddlers, birth to age 3, with or at risk for developmental delays in receiving resources and supports that assist them in maximizing their child's development.

Illinois State Board of Education

The state agency that oversees educational services for children ages 3 to 21 in Illinois.

Individualized Education Program (IEP)

An annually reviewed document required by the Individuals With Disabilities Education Improvement Act of 2004 for children in special education, ages 3 years and older. The IEP is created by parents, teachers, service providers, and school staff who design a plan of instruction, including annual goals, methods of evaluation, and the delivery of special education support and services.

Individualized Family Service Plan (IFSP)

A written early intervention plan developed and implemented by the child's parents and a multidisciplinary early intervention team. The IFSP takes into account the family's priorities, concerns, resources, and goals for their child. This information, along with input from additional evaluation and assessment, is formalized into a plan of services and support for the child and family in their natural environment.

Individuals With Disabilities Education Act (IDEA)

A federal law amended in 1997 and reauthorized in 2004 that amends the Education for All Handicapped Children Act of 1975. IDEA ensures services to children with disabilities throughout the nation and governs how states and public agencies provide these services.  Part B focuses on services to preschoolers and school-age children with developmental disabilities. (See also Individuals With Disabilities Education Act [Part C].)

Individuals With Disabilities Education Act (IDEA) (Part C)

The portion of the federal law that focuses on services to infants and toddlers who are at risk for or have developmental delays. (See also Individuals With Disabilities Education Act.)

Informed Consent

The process by which families acknowledge in writing that (1) they have been fully informed of all information related to an early intervention activity, (2) they agree to carry out the activity for which consent is sought, and (3) they understand that the granting of consent is voluntary.

Intake Meeting

Following a referral, the process of service coordinators contacting the family and scheduling an appointment to discuss the Early Intervention Program, including services and fees, family rights, and initial screening. The intake appointment gives families an opportunity to ask their service coordinator questions and share information about their child and family.

Least Restrictive Environment (LRE)

The educational setting that allows a child with disabilities to gain the most educational benefit while still participating in a regular educational environment to the greatest extent appropriate. LRE is a requirement of the Individuals With Disabilities Education Improvement Act of 2004 and usually applies to children 3 years of age and older.

Mediation

One option within the Illinois Early Intervention Program that parents can request when they have an individual child complaint regarding services and want to reach a consensus with another party. Mediation is voluntary and agreed to by the parties in dispute and is conducted by a qualified impartial mediator.

Natural Environments

Home and community settings in which children and families without disabilities would participate. The Individuals With Disabilities Education Improvement Act of 2004 Part C mandates that infants and toddlers with special needs be served in  natural environments.

Outcomes

Statements of what family members want to see happen for their child and their family as a result of their participation in early intervention. Family and child outcomes can focus on any area of child development or family life that a family feels is related to its ability to enhance the child's development. Outcomes often include a real-life context.

Parent Liaison

An individual who is the parent or guardian of a child with special needs and who has obtained a parent liaison credential may provide direct support services to families. These individuals also may provide consultation to team members and other service providers regarding family perspectives.

Priorities

Important components of a child's early intervention services identified by families and given specific attention by the early intervention team. Priorities are established by order of importance in a child's Individualized Family Service Plan (IFSP) (see above).

Referral

Any action that guides children and families to the local Child and Family Connections Office, which assists them in accessing available resources and/or information. Anyone who suspects that a young child has a developmental delay or is at risk for delay can make a referral by calling his or her local Child and Family Connections Office.

Resources

Persons, agencies, materials, or other supports available to families that can be used to support their ability to care for their child or benefit their child's early intervention services.

Service Coordination

The activities carried out by the service coordinator to enable an eligible child and the child's family to receive authorized services within the Illinois Early Intervention Program. These activities may include receiving referrals, ensuring procedural safeguards, protecting rights, documenting services, providing information about services and assisting in identifying goals.

Service Coordinator

A Child and Family Connections employee responsible for service coordination activities, including coordinating EI and non-EI services for families enrolled in the Illinois Early Intervention Program.

Service Provider

A professional contracted by the Illinois Early Intervention Program to provide services for children with or at risk for a developmental delay. Service providers are credentialed by the Illinois Department of Human Services. They can include but are not limited to occupational therapists, developmental therapists, physical therapists, and speech-language pathologists.

Transition

The organized process of helping children who have or are at risk for a developmental delay move between programs, including the Early Intervention Program. Examples of transitions include moving from the hospital to home or from Early Intervention Program services into a preschool program. The child's family and interdisciplinary team are responsible for developing a written transition plan that details the necessary steps for a smooth transition out of the Early Intervention Program.

APPENDIX B

Principles of Early Intervention

  1. The primary goal of EI is to support families in promoting their child's optimal development and to facilitate the child's participation in family and community activities.
  2. The focus of EI is to encourage the active participation of families in the therapeutic process by imbedding intervention strategies into family routines. It is the parents who provide the real early intervention by creatively adapting their child care methods to facilitate the development of their child while balancing the needs of the rest of their family.
  3. EI requires a collaborative relationship between families and providers, with equal participation by all those involved in the process. An ongoing parent-professional dialogue is needed to develop, implement, monitor, and modify therapeutic activities.
  4. Intervention must be linked to specific goals that are family-centered, functional, and measurable. Intervention strategies should focus on facilitating social interaction, exploration, and autonomy.
  5. Intervention shall be integrated into a comprehensive plan that encourages transdisciplinary activities and avoids unnecessary duplication of services. The plan shall be built around family routines, with written home activity programs to encourage family participation in therapeutic activities on a daily basis.
  6. Intervention should be monitored periodically to assure that the strategies implemented are successful in achieving outcomes.
  7. Children and their families in the Early Intervention System deserve to have services of highest quality possible. High standards will be set for the training and credentialing of administrative and intervention staff. Training, supervision, and technology will be focused to achieve excellence.

Source: Illinois Department of Human Services

APPENDIX C

Principles of Natural Environments

  1. Infants and toddlers learn best through everyday experiences and interactions with familiar people in familiar contexts.
  2. All families, with the necessary supports and resources, can enhance their children's learning and development.
  3. The primary role of a service provider in early intervention is to work with and support family members and caregivers in children's lives.
  4. The early intervention process, from initial contacts through transition, must be dynamic and individualized to reflect the child's and family members' preferences, learning styles, and cultural beliefs.
  5. IFSP outcomes must be functional and based on children's and families' needs and family-identified priorities.
  6. The family's priorities, needs, and interests are addressed most appropriately by a primary provider who represents and receives team and community support.
  7. Interventions with young children and family members must be based on explicit principles, validated practices, best available research, and relevant laws and regulations.

Source: Workgroup on Principles and Practices in Natural Environments (March 2008).

Mission and Key Principles for Providing Early Intervention Services in Natural Environments

APPENDIX D

Sample Early Intervention Contact Note

Service provider: Mary Smith

Caregiver(s): Connie Jones

Child: Kisha Jones

Location codes: 12-Home; 16-Family Day Care; 03-Nursery School/Day Care Center; 11-Outpatient Service Facility/Service Provider Location; 62-Early Intervention Program; 99-Other Setting

Date (Minutes) Code Location Code Start and End Time

3-17-16

(60)

 T1027 12 8:30 - 9:30 a.m.

Caregiver report: Connie said Kisha is making progress and is watching her face, making brief eye contact, especially during feeding times, and seems interested in visually tracking her toys or watching her shake her keys.

We worked on the following outcomes with your child today

  1. Making eye contact with adults when they softly touch child and/or sing to child.
  2. Visually following objects in motion. We used bright toys to catch Kisha's attention and moved them up and down and side to side as well as a toy that played music as it moved.
  3. Spending time on her tummy and reaching for toy or trying to roll to toy.

General observations-Kisha was alert and seemed interested in her mother's actions and the toys. She was not as fussy as last visit, and Connie seemed more confident in soothing her when she cried. Connie used diaper changing time to play peekaboo and catch and to maintain eye contact with Kisha. She rolled a ball back and forth to help Kisha track its movement on the floor.

Things to work on between visits

Encourage Mom to hold Kisha during bottle feeding and to respond to eye contact from Kisha by smiling, talking softly, or singing. Have Kisha on her tummy for 20 minutes during waking times 2-4 times a day to strengthen her torso and encourage rolling. Show Kisha bright items to reach for and watch and use objects (keys) that jingle or make noise to catch her visual attention.

Plan for next session: Continue to work on contingent mother child interaction.

Questions caregiver(s) have for next appointment

Connie asked about how much she should share about these sessions with her mother and sister, who sometimes take care of Kisha.

Next visit

March 24, 2016, 9 a.m.

APPENDIX E

Notes From Our IFSP Meeting

I attended our IFSP meeting on

Others who attended:

Names

Role on Team

Important things I learned about my child at the IFSP meeting:

Important outcomes we identified for my family and child:

Resources to help me understand EI and my family's IFSP:

Things that will happen next:

Who I can call if I have questions?

Name

Contact information

Programs, activities and employment opportunities in the Illinois Department of Human Services are open and accessible to any individual or group without regard to age, sex, race, sexual orientation, disability, ethnic origin or religion. The department is an equal opportunity employer and practices affirmative action and reasonable accommodation programs.

IDHS 4279 (R-05-18) A Guide for Families25,000 copies  Printed by the Authority of the State of Illinois P.O.#18-1461