Part of the “Facts at Your Fingertips” Series of
Informational Materials for Parents and Families Enrolled in the First Steps
System in Vigo County
Parents’ Rights. It sounds
important and it is. Parents’ Rights
are something our service providers talk about from the very beginning of the
First Steps process. We hear it dozens
of times. Sometimes, however, we’re so
busy dealing with our children, with writing IFSP outcomes, with making sure
our children are getting the supports and services that will be most helpful
that we don’t always take the time to really understand what Parents’ Rights
mean. This issue of “Facts at Your
Fingertips” is dedicated to explaining the rights parents of children enrolled
in First Steps have.
Little Background Information
Why do we have
Parents’ Rights? It sounds like
something that has to do with laws and in fact, it does. First Steps is Indiana’s name for the
federal program that serves infants and toddlers with disabilities and
developmental delays. This federal
program is part of the larger federal program known as I.D.E.A. or
Individuals with Disabilities Education Act. This law was originally passed by Congress in 1975 and later
updated several times. In 1986, the law
included providing services to infants and toddlers. So, it really is part of the law.
In writing the law,
Congress knew that it was important to guarantee to parents of children served
by the program, certain rights. By
doing this, Congress ensured that parents are active participants in the
process and there are protections and safeguards to ensure that the system is
supportive to children and families.
The 10 points
listed below will explain Parents’ Rights in the First Steps system in
Right to an Evaluation
Eligibility in First Steps is based on the gathering of lots of
important and relevant papers and information that help give a full and clear
picture of your child’s development. A
‘multidisciplinary team’ of professionals representing at least two different
areas of expertise does the evaluation.
Evaluations, or any tests, should always be done in your child’s native
language. No one test can be used to
determine whether or not your child is eligible. You also have the right for your child to have regular and
ongoing evaluations of your child’s strengths, skill levels, progress, and
The evaluation should be completed within 45 days from the time your
child is referred to First Steps.
The Right to a Coordinated Plan
Also within 45 days
from the time your child is referred, your service coordinator and those people
who will make up
your child’s multi-disciplinary team (including you) should come together
to create your child’s Individualized Family Service Plan (IFSP). This plan is the map for your child’s
services for the coming year and includes your child’s and your family’s
strengths, priorities, needs, and the services that will help meet those
identified needs, including how much service, when it will take place, where,
and who will provide the service. It includes the outcomes you would like to
see your child achieve. The IFSP is reviewed at least every 6 months and is
rewritten every year and you are an important part of that review process.
The Right to Consent
The right to give
consent or permission must always be obtained, in writing before an evaluation
can be done and
before services can be started or stopped.
Parents can choose not to give consent for any particular
jeopardizing any other services.
Consent can be revoked, or stopped at any time as well.
The Right to Prior Notice
Nobody likes major
surprises and in First Steps, the rules have been created to see that you have
no major surprises. Before any service
can be started, stopped, or changed, parents have the right to have 10 days
notice, in writing. These notices
should also explain your rights and give details for the decisions that are
being suggested. The notice should be
in your native language and be clearly explained to you.
The Right to Privacy
There are several
things that protect your privacy. One
is that, it’s just the right thing to do.
It is unethical for any service provider to share information about you
with anyone without your permission.
The other protection you have is legal.
The Family Education Right to Privacy Act (FERPA) is a law that
says any personal information about you cannot be shared with another person or
agency or program without you permission.
While it’s very important that service providers be able to work with
your child’s other providers and this requires that they talk together, you
must first give your permission for them to do so. The providers must contact you, explain the situation, and ask
for your written permission. Several of
the ‘release of information’ forms that you signed at the beginning of the
program give providers the right to talk together to best plan for meeting your
child’s needs. Remember that their
conversations are strictly professional and do not discuss your personal
Right to Review Records
Every child enrolled in First Steps has an official Early
Intervention Record (sometimes called the SPOE Chart) that is kept in the
System Point of Entry (SPOE) office.
Parents have the right to inspect, review, and amend their child’s
record. Parents also have the right to have a copy of this official
record. Every SPOE filing cabinet must
show a list of the people who have access to files and every individual record
contains a listing of those providers who have read the files. Records are not exchanged or sent to another
agency without a parent’s informed, written permission. If a parent disagrees with something that is
in the file, they may request that this information be changed or removed. If the provider does not agree that this
information should be removed or changed, parents have the right to request an
impartial hearing be scheduled to come to an agreement.
Right to Participate
No one knows your
child better than you do and no one is a more important member of your child’s
multi-disciplinary team than you are.
Every parent has the right to be a full and equal partner in planning
their child’s services, the delivery of those services and in the evaluation of
those services. Parents are such an
important part of this process that meetings should never take place without
their being there.
Right to Understand
Every parent has the right to know exactly what is going on with their
child’s service plan and the types of services their child is receiving. In order for this to occur, parents need information
to be shared with them in methods that are easy to understand. Information should take into account a
parent’s native language and any cultural issues that might be present. First Steps does not discriminate based on
race, ethnic background, religion, disability,
to Have an Advocate
The First Steps process can seem overwhelming and confusing, especially
in the beginning. It’s important for
parents to feel comfortable while they’re learning the new system and
comfortable as time goes on and their child participates. For this reason, parents are encouraged to
build their own support system through friends, family members, and other
parents who have participated in the program and other service providers. This support team can be a real help to
families during any part of the First Steps process.
Not every part of any service delivery system will make families
happy. Sometimes, parents and providers
may disagree on an issue. If this
happens, parents have the right to seek help in resolving any issue. As a rule, parents should first discuss any
difficulty with their child’s service coordinator. If this doesn’t work, there are other avenues of complaint, all
the way up to a complaint filed at the state level. There are parent support services available to help parents
understand the complaint system.
This informational packet was designed to explain, briefly, the rights
of parents who have a child who participates in the First Steps system. These rights should be shared with you, as
parents, throughout the time your child is enrolled in First Steps. If you ever have a question regarding your
rights, feel free to speak with your service coordinator, or call the Local
Planning and Coordinating Council coordinator for more information, at (812)