Subject: Early Intervention Help, Part 1
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A PARENT'S GUIDE TO ACCESSING PROGRAMS FOR INFANTS, TODDLERS, AND PRESCHOOLERS
WITH DISABILITIES
Update August, 1994
________________________
NICHCY
National Information Center for Children and Youth with Disabilities
P.O. Box 1492 Washington, DC 20013
1-800-695-0285 (Voice/TT)
E-mail: nichcy@aed.org
URL: http://www.nichcy.org
________________________
Note: 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.
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?
For answers to these and other questions, talk to your service coordinator, contact a
parent support and/or training group in your area, or contact NICHCY.
We hope these materials are useful. If you need more help or information from NICHCY, please call us 1-800-695-0285 (Voice/TT), or write to us at this address: NICHCY, P. O. Box 1492, Washington, D.C. 20013-1492
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?
For answers to these and other questions, talk to your special education coordinator or
school principal or contact a parent support and/or training group in your area.
Also, write to NICHCY and ask for a copy of "Questions Often Asked About Special
Education Services" and/or the longer, more detailed "Questions and Answers
about the Individuals with Disabilities Education Act." Both documents contain
information about special education laws and parents' rights in getting school services
for their children with disabilities.
We hope these materials are useful. If you need more help or information from NICHCY, please call us at 1-800-695-0285 (Voice/TT) or write to us at this address: NICHCY, P. O. Box 1492, Washington, D.C. 20013-1492
