PART I: Questions
and Answers About Early Intervention Services (0 to 2 years)
Information Center for Children and Youth with Disabilities (NICHCY)
Note, October 1997--
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.
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.
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. Having this information
available may be helpful to you later on. The sample record-keeping worksheet
below can help you start a file of information about your child. 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;
--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
Name of person or
agency you talked to:
Name of your contact person
Date you called:
Results of discussion:
Person not helpful
on this topic, but may be helpful regarding (list topics/areas/issues):
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
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
-- 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 Parent's Guide to Accessing Parent
Information Center for Children and Youth with Disabilities
- A Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers
P.O. Box 1492 Washington, DC 20013 1-800-695-0285 (Voice/TT)
E-mail: firstname.lastname@example.org Url: http://www.nichcy.org