A Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities

By: National Information Center for Children and Youth with Disabilites (1997)

Note, October 1997 Dear Reader:

The Individuals with Disabilities Education Act (IDEA) has been amended! This is the law that guides how schools deliver special education and related services to students with disabilities.

You will be reading about the IDEA in this publication. This note is to alert you that, while much of the law remains essentially the same, some aspects have changed as a result of the amendments just passed in June, 1997. Bear this in mind as you read about the IDEA in this publication.

NICHCY prides itself on providing accurate, up-to-date information on disability issues, so we are working hard to update all of our publications to reflect the newest version of the law. Please bear with us while we tackle this enormous job!

If you have questions about the new amendments, please feel free to contact NICHCY.

We have written this Parent's Guide to help families learn how to get help for their young children with special needs (ages birth through 5 years).

We have posed the most asked questions about early intervention services for children ages birth through 2 years old and special education and related services for children ages 3 through 5 years old.

The rules or guidelines for special education in the United States and its territories are outlined in a federal law known as the Individuals with Disabilities Education Act (IDEA), formerly known as the Education of the Handicapped Act (EHA). Each state or territory develops its own policies for carrying out this Act. (You can read more about this law later in this document.)

You'll need to find out what the early intervention or special education policies are in your state and area. The list of agencies and contact people in your state should help you get started. A NICHCY State Resource Sheet for your state is available from NICHCY.

The phrases "children with special needs" or "special needs children" are used throughout this document to refer to children who have disabilities or who are at risk of developing disabilities.

Many of the special education words that appear in this Parent's Guide are defined in the Parent's Dictionary that appears toward the end of this document.

Part I:

Questions and Answers About Early Intervention Services For Infants and Toddlers Who Have a Developmental Delay or Who Are At Risk of a Developmental Delay (Ages Birth Through 2 Years Old)

Note: Many of the words below may be new to you, but they are those that are commonly used in special education. We have used these terms to help you become familiar with them. You can find their definitions in the Parent's Dictionary towards the end of this document.

We have used the term "parent" to mean anyone who is in charge of the care and well-being of a child. These can be guardians, single parents, grandparents, surrogate parents, foster parents, or other family members.

The federal law known as Public Law (P.L.) 102-119 guarantees certain rights to young children (ages birth to 5) with special needs. This law is the most recent amendment to IDEA. (To learn more about this, see the section entitled "Information About IDEA.")

Q: What should I do if I think my child has special needs?

A: First, you'll need to find out if your infant or toddler is eligible for early intervention services. There are many people who can help you with this. We will explain how to get the help you need in the pages that follow.

Q: What are early intervention services?

A: These are services for infants and toddlers that are designed to identify and treat a problem or delay as early as possible. Early intervention services are offered through a public or private agency and are provided in different settings, such as the child's home, a clinic, a neighborhood daycare center, hospital, or the local health department.

Early intervention services can range from prescribing glasses for a two-year-old to developing a complete physical therapy program for an infant with cerebral palsy.

Q: Who do I contact first for help?

A: Each state decides which of its agencies will be the lead agency in charge of early intervention services for infants and toddlers with special needs. In your state, the first contact person may be an early interventionist (an early childhood specialist working with infants and toddlers), someone with the lead agency, or someone in your state's Child Find office.

To find out who can help you in your area, contact the person listed on your State Resource Sheet under "Programs for Infants and Toddlers with Disabilities." If you don't have a State Resource Sheet, call NICHCY at 1-800-695-0285 (Voice/TT).

Explain that you want to find out about early intervention services for your child and ask for a name in your area.

Important. Write down the names and phone numbers of everyone you talk to. (You can use the Sample Record-Keeping Worksheet on the last page of this document as a guide.) Having this information available may be helpful to you later on.

Q: What do I say when I talk to my local contact person?

A: Explain that you think your child may need early intervention services and you would like to arrange for an evaluation and assessment. Write down any information you are given.

Q: What is an evaluation and assessment?

A: Evaluation refers to the procedures used to determine if a child is eligible for early intervention services. Assessment refers to the ongoing process of gathering and using information about how a child is developing and determining what kind of help he or she might need.

In regards to your child, this information may come from some or all of the following:

• Doctors' reports;
• Results from developmental tests given to your child;
• Your child's medical history;
• Observations and feedback from all members of the
• multidisciplinary team, including parents; and
• Any other important observations, records, and/or reports about your child.

Q: Who does the evaluation and assessment?

A: It depends on your state's policies or rules. Ask your local contact person about this. Usually, a team of professionals, which may include a psychologist, an early interventionist, and an occupational or physical therapist, will evaluate a child.

Q: Who pays for the assessment?

A: Under P.L.102-119, evaluations and assessments are provided at no cost to families. Check with your contact person for local guidelines.

Q: Will I have to pay for any services if my child is found eligible?

A: Usually, services are provided at no cost to the family. You may have to pay for some services, depending on your state's policies. Check with the contact person in your area or state. Some services may be covered by your health insurance, by Medicaid, or by Indian Health Services.

In some areas, you may be charged a "sliding-scale" fee that is based on what you earn. Every effort is made to provide services to all infants and toddlers who need help, regardless of family income.

Q: What is a service coordinator (case manager)?

A: When a child's needs are assessed and the child is found eligible for services, a service coordinator will be assigned to the family. This person should have a background in early childhood development and methods for helping young children who may have developmental delays. The service coordinator should know the policies for early intervention programs and services in your state. This person can help you locate other services in your community, such as recreation, child care, or family support groups. The service coordinator will work with your family as long as your baby is receiving early intervention services and, after your child is 2 years old, the service coordinator will help your family move on to programs for children ages 3 through 5.

Q: What is an IFSP?

A: The family and the service coordinator work with other professionals, as appropriate, to develop an Individualized Family Service Plan, or IFSP. The guiding principal of the IFSP is that the family is a child's greatest resource, that a baby's needs are closely tied to the needs of their family. The best way to support children and meet their needs is to support and build upon the individual strengths of their family. So the IFSP is a whole family plan with the parents as the most important part of the IFSP team. Involvement of other team members will depend on what the baby needs. These other team members could come from several agencies, and may include medical people, therapists, child development specialists, social workers, and others.

The IFSP will describe the following: the child's development levels; family information (with parents' concurrence); the major outcomes expected to be achieved for the child and family; the services the child will be receiving; when and where he or she will receive these services, and the steps to be taken to support his or her transition to another program. The IFSP will identify the service coordinator. The IFSP may also identify services the family may be interested in, such as financial information or information about raising a child with a disability.

Each state has developed specific guidelines for the IFSP. Your service coordinator can explain what the IFSP guidelines are in your state.

Q: Are there any parent groups in my area that can give me more information about early intervention services?

A: There are several types of parent groups, including:

• Support groups (such as Parent-to-Parent) for families of children with disabilities;
• Parent training and information programs funded by the federal government, such as the Technical Assistance for Parent Programs (TAPP) Project; and
• Groups concerned with a specific disability, such as United Cerebral Palsy Associations, Inc. (UCPA) or the Arc (formerly the Association for Retarded Citizens of the United States).

We have listed some of these groups on the State Resource Sheet.

Parent groups can offer information, support, and/or training to families of children with disabilities to help parents take a more active role in helping their children. Through such groups, families meet other families with similar needs to discuss resources, day-to-day problems, and personal insights.

Your service coordinator or someone at your local school may be able to tell you about nearby groups. For more details on parent groups, contact NICHCY (1-800-695-0285) and ask for our "Parent's Guide to Accessing Parent Programs."

Q: I still have a lot of questions. How can I find out more about special education laws and about early intervention services?

A: See the section of this document entitled "Information about IDEA" for more information on one of the most important special education laws. Also, see the "References" section for selected additional information on the development of infants and toddlers with disabilities, on early intervention programs and services, and on raising and caring for a young child with special needs.

As time goes by and your child begins to receive services, you will probably have more questions. For example, you might want to know:

• How do I check on the services my child is getting?
• What do I do if I am not satisfied with my child's assessment, program, or progress?
• What happens to my child once he/she is too old for the program?
• What about private therapists and private schools?

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Part II:

Questions and Answers About Special Education Programs and Services for Preschoolers with Disabilities (Ages 3 Through 5 Years Old)

Note: Many of the words below may be new to you, but they are terms that are commonly used in special education. We have used these terms to help you become familiar with them. You can look up their definitions in the Parent's Dictionary towards the end of this document.

The phrases "special education," "special education programs," "special education services," and "special education programs and services" are used interchangeably in this section.

Below are answers to questions people often ask about special education programs and services for preschool children (ages 3 through 5 years old) who have disabilities.

A federal law known as Public Law (P.L.) 102-119 guarantees certain rights to young children (ages birth to 5) with special needs. This law is the most recent amendment to Public Law (P.L.) 94-142, The Education For All Handicapped Children's Act, now called the Individuals with Disabilities Act (IDEA).

Q: What should I do if I think my preschool child needs special education?

A: If you think your preschooler needs special education, you will first want to find out if he or she is eligible for a special education program. There are people who can help you with this. Read on, and we will explain how to contact them.

Q: What are special education programs?

A: Special education programs are specially designed programs in public schools offered at no cost to families of children with disabilities. Today, under P.L.102-119, all schools must offer special education services to eligible 3-5 year olds with disabilities.

Q: Who do I contact first for help?

A: The best place to start is your local public elementary school. (In most cases, this would be the school that other children who live near you attend.) Call and ask to speak to the principal or to someone in charge of special education at the school.

If this doesn't work, look on the NICHCY State Resource Sheet under "State Department of Education." Call the Early Childhood Specialist for children ages 3-5 years and ask for the name and phone number of the person in your area in charge of these programs. Explain that you want to find out about special education services for your child. Ask what you need to do to arrange for an evaluation.

Write down the names and phone numbers of everyone you talk to. (As a guide, you can use the Sample Record-Keeping Worksheet at the end of this document.) Having this information available may be helpful to you later on.

Q: What is an evaluation?

A: Evaluation means the procedures used to determine whether a child has a disability and the extend of the special education and related services the child needs. In regards to your child, this information may come from:

• Doctors' reports;
• Results from developmental tests given to your child;
• Your child's medical history;
• Observations and feedback from all members of the assessment team, including parents; and
• Any other important observations, records, and/or reports about your child.

Q: Who conducts my child's evaluation?

A: Your child's evaluation will be conducted by a multidisciplinary team of group of persons. Who is involved will depend on the rules in your state or school district. Ask your school contact person what the policy is for getting an evaluation for your child.

Q: Will I have to pay for the evaluation or for any services my child may be eligible for?

A: Special education services are offered for 3-5-year-olds at no cost to parents. The assessment and evaluation process is considered part of these services and is provided at no cost to families.

Q: Are there any parent groups in my area that can give me more information about special education?

A: There are several types of parent programs, including:

• Support groups (such as Parent-to-Parent) for families of children with disabilities;
• Parent training and information programs funded by the federal government, such as the Technical Assistance for Parent Programs (TAPP) Project; and
• Groups concerned with a specific disability, such as United Cerebral Palsy Associations, Inc. (UPCA), or the Arc (formerly the Association for Retarded Citizens of the United States).

We have listed some of these groups on your State Resource Sheet. You can also check with someone in your local school or call NICHCY.

Parent groups can offer information, support, and/or training to families of children with disabilities to help them take a more active role in their children's education. Through such groups, families meet other families with similar needs to discuss local resources, daily problems, and personal insights. For more details on these and other parent groups, contact NICHCY and ask for our "Parent's Guide to Accessing Parent Groups."

Q: I still have a lot of questions. How can I find out more about special education programs and services?

A: See the section entitled "Information about IDEA" to learn more about one of the most important special education laws. Also, see the "References" section towards the end of this document for information on raising and caring for a young child with special needs.

Once your child has been found eligible for special education, you will most likely have more questions. For example:

• How do I check on my child's special education program?
• What do I do if I am not satisfied with my child's assessment, placement, program, or progress?
• What happens to my child when he or she is too old for the program?
• What about private therapists and private schools?

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References for Families

Books

• Batshaw, Dr. Mark L. (1991). Your Child Has a Disability: A Complete Sourcebook of Daily and Medical Care. Boston: Little, Brown and Company. (Available from Little, Brown and Company, Attention: Order Department, 200 West Street, Waltham, MA 02154. Telephone: 1-800-759-0190.)

  A book that offers practical information to help parents meet the daily physical and emotional needs of their child with a disability. Includes information on finding the right doctor, the daily and long-term care requirements of different disabilities, behavior management techniques, nutrition, the use of medications, and much more.

• Callahan, Charles. (1990). Since Owen: A parent-to-parent guide for care of the disabled child. Baltimore, MD: Johns Hopkins University Press. (Available from Johns Hopkins University Press, Hampden Station, Baltimore, MD 21211. Telephone: 1-800-537-5487.)

  A book which addresses the challenges of raising a child with a disability by offering both the author's personal experiences and practical suggestions and insights. Discusses the life span of issues, including genetic counseling for parents, issues associated with hospitalization of children with disabilities, their transition from the hospital to home, the family's emotions and stress, support resources, the special education system, and the child's transition to adult life.

• Dickman, Irving. (1993). One miracle at a time: Getting help for a child with a disability (rev. ed.). New York: Simon & Schuster. (Available from Simon & Schuster, 200 Old Tappan Road, Old Tappan, NJ 07675. Telephone: 1-800-223-2336.)

  A book which offers emotional and practical support to parents of children with disabilities. Shares the struggles, strategies, and successes of other parents in regard to caring for a child with disabilities, working with medical professionals, collaborating with school personnel, being an effective advocate, identifying and using assistive technology devices, and providing for the needs of family members. Includes a wealth of information about disability resources.

• Krahl, Rhonda. (1990). Rebuilding your dream: Family life with a disabled child. Iowa City: Author. (Available from Publications Order Department, 100 Oakdale, M105, Iowa City, IA 52242-5000. Telephone: 1-800-235-2665.)

  A book for parents of children with disabilities.. Deals with the many emotions that parents experience when they find their child has a disability. Suggestions are given for adjusting and adapting, maintaining the marriage relationship, meeting the needs of other children in the family, helping grandparents, facing the world, and working with professionals.

• Lawrence, K., Johnson, G., & Stepanek, J. (Eds.). (1994). Parent resource directory (5th ed.). Bethesda, MD: Association for the Care of Children's Health. Available from the Association for the Care of Children's Health, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (301) 654-6549.)

  Directory which helps locate family members who are willing to share their interests, experiences, and expertise. Has been used to find parent-to-parent support, identifying parents with specific types of expertise related to program development, policy formulation, and legislative and other advocacy activities. Lists more than 450 parents/caregivers, including contact information and their child's condition and areas of interest/expertise. Organized/indexed by state/province, names, types of conditions, and topical areas.

• Miller, N.B. (1994). Nobody's perfect: Living and growing with children who have special needs. Baltimore, MD: Paul H. Brooke. (Available from Paul H. Brookes, P.O. Box 10624, Baltimore, MD 21285-0624. Telephone: 1-800-638-3775.)

  >A book for parents that is filled with the voices of other parents who have children with special needs. Discusses the range of emotions many parents experience in raising a child with a disability and offers strategies and emotional support to help parents address parenting issues, work effectively with professionals, and take care of themselves and their children.

• Turnbull, A.P., Patterson, J.M., Behr, S.K., Murphy, D.L., Marquis, J.G., & Blue-Banning, M.J. (Eds.). (1993). Cognitive coping, families, and disability. Baltimore, MD: Paul H. Brookes. (Available from Paul H. Brookes, P.O. Box 10624, Baltimore, MD 21285-0624. Telephone: 1-800-638-3775.)

  A book which offers parents and family members a set of strategies for coping with and successful addressing the daily challenges of disability. Based on the findings of research and the personal experiences of parents, discusses cognitive coping, its impact upon family adjustment and adaptation to stress, and its power to help families enhance their senses of esteem, control, meaning, and well-being.

Other Printed Materials

The Exceptional Parent. A magazine published twelve times a year for parents, individuals, organizations, librarians, schools, and agencies. (Available from The Exceptional Parent, P.O. Box 3000, Denville, NJ 07834. Telephone: 1-800-562-1973.)

Parent's Record-keeping Worksheet

The sample record-keeping worksheet below can help you start a file of information about your child. As you contact different people and places, it's a good idea to keep records of people you've talked with and what was said. As time goes by, you will want to add other information to your file, such as:

• Letters and notes (from doctors, therapists, etc.);
• Medical records and reports;
• Results of tests and evaluations;
• Notes from meetings about your child;
• Therapist(s') reports;
• IFSP and IEP records;
• Your child's developmental history, including personal notes or diaries on your child's development;
• Records of shots and vaccinations; and
• Family medical histories.

Make sure you get copies of all written information about your child (records, reports, etc.). This will help you become an important coordinator of services and a better advocate for your child. Remember, as time goes on, you'll probably have more information to keep track of, so it's a good idea to keep it together in one place.

• Sample Record-Keeping Worksheet
• Problem/Topic:
• Name of person or agency you talked to:
• Name of your contact person (may be same as above):
• Date you called:
• Phone #
• Results of discussion:
• Action taken (if any):
• Person not helpful on this topic, but may be helpful regarding (list topics/areas/issues):

Parent Guide is published once a year. In addition, NICHCY disseminates other materials and can respond to individual requests for information. All services and publications are free. For further information and assistance, or to receive a NICHCY Publications List, contact NICHCY, P.O. Box 1492, Washington, DC 20013. Telephone: 1-800-695-0285 (Voice/TT) and (202) 884-8200 (Voice/TT).

NICHCY thanks our Project Officer, Dr. Sara Conlon, at the Office of Special Education Programs, U.S. Department of Education, for her time in reading and reviewing this document and, as always, for her commitment to the Clearinghouse.

Project Staff Project Director: Suzanne Ripley Deputy Director: Richard L. Horne, Ed.D. Editor: Lisa Kupper

This information is copyright free, unless otherwise indicated. Readers are encouraged to copy and share it, but please credit the National Information Center for Children and Youth with Disabilities (NICHCY). Please share your ideas and feedback with our staff by writing to the Editor.

This document was developed by the Academy for Educational Development (AED) under Cooperative Agreement #H030A30003 with the Office of Special Education Programs, U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

The Academy for Educational Development, founded in 1961, is an independent, nonprofit service organization committed to addressing human development needs in the United States and throughout the world. In partnership with its clients, the Academy seeks to meet today's social, economic, and environmental challenges through education and human resource development; to apply state-of-the-art education, training, research, technology, management, behavioral analysis, and social marketing techniques to solve problems; and to improve knowledge and skills throughout the world as the most effective means for stimulating growth, reducing poverty, and promoting democratic and humanitarian ideals.

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