Home
About MAC
What We Do
News & Events
Resources
Melody's Family
Contact Us
Melody Arons Center Logo
Busy Box
A
HANDBOOK FOR PARENTS AND PROVIDERS ABOUT CHILDREN WITH DISABILITIES,
AGES 0-5
Table of Contents
Top
The Parent-Professional Team: Parents
The parent/family must be given full explanations in language they understand about:
Top
Early Intervention and Preschool Steps
The process of early intervention and preschool special education always follows the same steps. Those steps are:
The IFSP connects all of the information from the testing and turns it into a written program for your child. The same is true of the IEP. It is helpful to think about the IFSP and IEP in two ways: (1) Process, and (2) Product.
Process
Process is the meeting(s) that you attend with the evaluators and others who work with your child. You are the most important person at that meeting because you spend the most time with the child. You can ask to see all of the written reports before the meeting, and meet with the evaluators before the meeting so that you are certain that you understand the findings and recommendations. You can write your own report if you want and give it to the group. The IFSP and is required to have a written statement about family resources, priorities and concerns. Much of this should be reflected in the “family-directed” assessment. This is not true of the IEP in that all necessary services are to be provided at not cost to the parent so that a statement of their resources is not required. There will be things that you know and feel that only you can share about your child at the meeting. In addition, you are the only person who knows whether or not the child that is described in the reports is the child with whom you live. Process is the giving and sharing of information by the members on the Parent-Professional team. The result of that discussion is a written contract between the parent and service providers which describes the exact services to be given, who will provide them, and where.
Product
The product is the written IFSP or IEP. At minimum it must include:@. Present levels of development. The strengths and weaknesses of the child and parent must be accurate and in writing.
The Parent-Professinal Team: Professionals
Professionals in early childhood know better than anyone how difficult it is to accurately evaluate an infant or toddler, as well as many preschoolers. Research continues at a remarkable rate that may result in more adequate evaluation tools in the future for this age group. It is important that you specialize in evaluating the 0-2 and 3-5 populations in order to bring both experience and training to the Parent-Professional team. Your rules for evaluating children of all ages are found in the IDEA. Additional emphasis, however, is placed on the role of the family in early intervention and preschool and on evaluating the needs of the family unit.
As an evaluator, you face a profoundly complex task. In evaluating infants and toddlers, you no longer have language as a tool for measurement. The child may have physical impairments, and you must figure out how to measure without language and without certain biological markers. Similar problems are faced in working with children ages 3-5. You need to work with a team of professionals, so that together you can assess all of the necessary systems of the child and determine levels of functioning. What are you expected to do?
Top
Evaluation
In conducting the evaluation of the infant, toddler, and preschooler, the IDEA states that the following is to be done by the professional:
Provision of Services
As professionals involved with the provision of services to infants and toddlers, IDEA expects specific activities to be done. They are:
The IDEA has a specific section regarding personnel preparation and coordinated research. It offers competitive grants to improve transitional services through coordinated research and teacher training. These activities are to lead to new knowledge production and dissemination among the professionals in the field. Emphasis is placed on coordinating and integrating education, health and social services. Synthesizing of useful research is encouraged, as well as the analysis of professional knowledge bases.
Particular focus is upon ensuring that the outcome of publicly funded research is shared with those it affects and that there is a coordinated outreach across all professions to improve the field of early intervention and preschool education. The goal is the prevention of disability and the fostering of readiness to enter kindergarten
Top
The Federal Interagency Coordinating Council
The top-down structure of early intervention is designed to combine funding streams for services at the bottom of each state’s system of service delivery. That federal structure is called the Federal Interagency Coordinating Council. Its purpose is to create national policy in order to meet the urgent need of families with disabled infants and toddlers. This Council does not address the needs of children ages 3-5. The mission of the Council is to minimize the potential for developmental delay so that special education may not be needed by the time these children reach school age. Because of the overlap of medical, family and educational services for children ages 0-2, this interagency system was created to provide comprehensive and coordinated services in all 50 states.
The Federal Interagency Coordinating Council has representatives from 19 federal agencies, in addition to parents of children with disabilities. These parents are only 20% of the total membership and might not have any infants or toddlers. Their 20% comes from families with disabled children under age 12, with only one parent required to be on the Council with a child under age six. Finally, at least two representatives of State agencies are also members. One comes from a state department of education, while the other comes from a non-education agency in a state, such as a state’s Department of Health and Human Services.
What is the practical implication of the membership of this Council? The numbers tell the story. A total of 21 members are top-down people who are political appointees implementing political agendas of the party in power. Twenty per cent of that number is four. Four parents are on the Council, which has a minimum total membership by statute of 25. Only one of the 25 is a parent with a child under age six. Therefore, it becomes clear that national policy and funding is controlled by whoever is elected to the presidency or to Congress. Neither parents nor states have any meaningful representation on the federal council whose ultimate job is to figure out how the early intervention system is to be funded.
MEMBERSHIP OF THE FEDERAL INTERAGENCY COORDINATING COUNCIL
The composition of the Council appears below. (Note: Each acronym is translated below the table. They are to be read vertically in the table, rather than left to right.)
Number of Members per Agency Minus Parents
Names of Agencies/Members
Top
State Interagency Coordinating Council
Similar to the Federal Interagency Coordinating Council created by the IDEA, the State Interagency Coordinating Council was also established in order to better serve individual state’s needs. This state Council is to have quarterly meetings that are publicly announced and open to the public. It is responsible for implementing a statewide system of appropriate early intervention and preschool services that are both supervisory and direct in nature. The State, from a legal point of view, is ultimately responsible for the services that are to be in place for children and families at the local level.
The direct services that each state must provide include:
The division of the membership of the state Council is in three categories. They are (1) parents; (2) service providers; and (3) agencies involved with early intervention services. Upon closer look, however, the makeup of the state Council appears to be even more politically oriented than that at the Federal level. Parents make up 20%, service providers make up 20%, and agencies make up 60%. Additional members can be added at a governor’s discretion.
MEMBERSHIP OF THE STATE INTERAGENCY COORDINATING COUNCIL
(Note: Each acronym is explained in the list below the graph.)
Numbers of Members per Agency
Names of Agencies/Members
PU6…Parent with a child under age 6
P12U..Parents with children age 12 or under
SL…...State Legislature representative
PP…...Personnel preparation representative
DOE…Department of Education preschool services representative
HI……Health Insurance representative
HS…..Head Start representative
CC….Child Care agency representative
O……Others at the discretion of the governor of the state
Top
Conclusion
Things are very busy in the Busy Box of early intervention and preschool services to disabled children and their families. This Handbook has attempted to provide an overview for all of those in all corners of the early intervention and preschool system. It is the hope of the Melody Arons Center that it may encourage a broader understanding of service delivery so that those who need the services most- those at the bottom of the system- can receive them.
Top
For more information, contact: mac@melodyaronscenter.org
Table of Contents
* Introduction
* The Melody Arons Center
The Handbook
* Parents
* Educators and Clinicians
* Legislators and Health Insurers
* The Busy Box
The Structure of Early Intervention and Preschool Special Education
* The Bottom Up
* The Parent-Professional Team
* The Parent-Professional Team: Parents
* Early Intervention and Preschool Steps
* The Parent-Professional Team: Professionals
* Evaluation
* Provision of Services
* The Federal Interagency Coordinating Council
* The State Interagency Coordinating Council
* Conclusion
Introduction
The Melody Arons Center is pleased to provide some help and insight
into the nationwide system of early intervention and preschool services
for children ages 0-5. This is the first Handbook from our
new organization. Our goal is to facilitate dialogue and understanding
between the partners of the decision-making team: families,
service providers, legislators, child care agencies, Head Start,
Medicaid, and all others who may become involved. Each is
a member of a unique team whose purpose is to provide free, appropriate,
and individualized services to young children and their families.
At the core of this uncommon partnership is a federal law called
the Individuals With Disabilities Education Act (IDEA). IDEA
began in 1975 and was recently revised in 1997-1999. Every
decision made by the partners of the early intervention team is
ultimately a legal one. Partners exist at the national, state, and
local level. They are federal appointees at the top and parents
and children in need of services at the bottom. In between
is a busy and complicated system designed to provide statewide,
interagency programs to families with at-risk or developmentally
disabled young children. Little has been published about this
highly specialized area of special education. Therefore, this
Handbook is intended as a brief overview for all of the team members
in order to understand the “Hows” and “Whys”
of the system. Much of the language in the Handbook comes
directly out of the IDEA. Citations from the law have been
omitted because of the broad-based audience intended for this publication.
We have chosen to begin our handbook series with an explanation
about the legal and procedural nature of the system because that
is the one area in which accurate information appears most difficult
to obtain. Subsequent Busy Box Handbooks will be provided
on brain development of young children, and on the topic of assistive
technology.
Top
The Melody Arons Center
The Melody Arons Center for Applied Preschool Research and Education
was created in 1997 in the memory of Melody Arons. Melody
was born in 1968 with multiple disabilities. She overcame
many of her early problems through a combination of the early intervention
of her family and her own internal drive to succeed. Her tragic
and unexpected death in 1997 provided the impetus for the creation
of this living memorial.
Melody’s mother, Marilyn Arons, became known for her work in
developing the field of nonlawyer practice in special education.
As the parent of a disabled child she looked for help in meeting
Melody’s special needs. Even as an educator, she was
unable to find the help that Melody needed. As a result, she
founded the first parent information center in the United States
in1977, the Parent Information Center of New Jersey, Inc.
She developed that organization until her retirement from it in
1999. At the age of 60, she returned to graduate school in
1998 and is scheduled tocomplete an Early Childhood Special Education
degree from the Bank Street College of Education in 2001.
She brings 40 years of educational and legal experience with children
and families to the creation of the Melody Arons Center.
The vision of the Center is to bring together a multidisciplinary
group of professionals with an interest in using and integrating
neuroscientific principles into the field of early intervention.
The importance of understanding brain development and processing
has the potential to improve diagnosis and treatment through the
merger of good science and good education. There is particular
interest in the importance of music, dance, and art, as well as
in pre-birth programs and activities with the parent and caregiver(s).
Top
THE HANDBOOK
Parents
You have just learned that your baby or toddler has a problem.
What do you do? You are frightened. You cry. You
are angry. You may deny there is a problem. You are
overwhelmed and bewildered at what could be ahead. And throughout
this time of inner turmoil, you have a baby that depends on you
for life, for love and for a future. Only a family who has
gone through your experience knows what you are feeling now.
Many people will be telling you what to do and what not to do, many
of them disagreeing with the other. As soon as you are able,
you start to connect with other parents for support. You will
rely on the recommendations made to you by the professionals, but
begin to learn the skills needed to be an equal member of the decision-making
team about the needs of your child. Take it a day at a time,
a step at a time. In the same way that your child is developing,
so too are you developing your skills at advocacy and learning how
to speak up about your thoughts and opinions concerning your child.
In order for you to find your way and make some sense out of what
is happening and will continue to happen, this Handbook attempts
to provide you with the same road map that everyone on the decision-making
team for your child must follow. That map is the language
of the law, the Individuals with Disabilities Education Act, the
IDEA. Throughout this Handbook you will see references to
the IDEA. Whenever you see those letters- I-D-E-A- it means
that what is being said comes directly out of the pages of that
law. The Handbook will try and explain to you about how and
when things will be done in order to provide you and your child
with free and appropriate services. It explains about members
of the team are who make decisions about your child. The most
important member of that team is you. You know your child
the best. Gradually, you will learn to communicate what you
see and experience every day to others who will provide the services.
You will also be providing services, once you are shown what to
do. You do not need a high school diploma or a college degree
to know your baby. You do need to be willing to learn from
others and to teach others what you know about your culture, values
and beliefs. You have the right for everything to be explained
to you in language that you understand. And you have the right
to say “No.” Other members of your team also have
rights, and can disagree with you. All of you have responsibilities
to make the smartest decisions possible for your child. You
will learn to ask questions and become proud of what you are learning
to do for yourself and for your child. Feeling sorry for yourself
and being mad at the world does not solve the problem. Only
your action will make you able to face the future and to feel confident.
Don’t let anyone talk down to you or be discourteous to you.
You are a partner on the professional team assigned to your child.
You have rights and you have responsibilities. You are the
primary caregiver for your child.
Top
Educators and Clinicians
You are committed to serving infants, toddlers and preschoolers
and their families. You know what services are needed and
how to provide them. But you are often beleaguered by the
red tape of the funding bureaucracy. Local policies and pressures
may require that you provide no summer services or that only so
many services can be given on one day. You are flooded with
paper work and rules that seem to make no sense. You entered
early childhood education because you had a passion for the work,
the children and the families. But it is increasingly hard.
More and more is asked of you with less and less support.
You take additional courses and upgrade your skills and knowledge
base. But the system does not seem to work, and is often unresponsive
to your recommendations. As a result, you cannot always do
what your professional judgment dictates. You are torn between
what should be done and what you are able to do.
In many ways, you are in a more vulnerable position than the children
and families you serve. You do not always receive reliable
information about funding and services where you work, so that you
may not know where you fit in the big picture of the service-delivery
system for the child. This impacts upon your partnership with
families, children, and other service providers. It is probable
that you have little idea about the legislative road map that guides
the twists and turns in the path of your state’s service-delivery
system.
Parents expect you to have answers to solve the riddle of their
child’s disability. It is your talent and your burden
to tell them that there may be no specific solutions, and the best
you can do is to try. The job ahead is to develop a working partnership
with the families, teach them what you know, respect their intelligence,
and do the job you were trained to do. Objectivity and patience
are your passwords.Go to top LEGISLATORS AND HEALTH INSURERS
In a very real sense, you are the key players in the successful,
nationwide system of early intervention and preschool services.
It is you job to figure out the funding scheme. That enables the
evaluators, educators, physicians, researchers, and parents to work
successfully as a team in the best interests of young children who
are developmentally disabled or at-risk for developing a disability.
You know well that special education and preschool programs are
politically charged issues. How do you say “No”?
When should you say “No”? Do these expensive programs
pay off in the long run?
You know that you should say “No” to lack of supervision
and oversight. You should say “No” to programs that
show no positive long-term outcome. You know that early intervention
and preschool programs pay off in the long run because of the number
of federal studies on the subject that you have funded in the past.
It is vital that an improved system for funding services to this
growing population of preschool children be established and turf
wars resolved. You have taken a first step, but there is a
long way to go. Identification and coordination of all available
resources needs to be available to you and to your constituents.
Only you can resolve agency disputes and address the concept of
“payer of last resort” for the millions of children who
need services and cannot afford them.
The laws for preschool special education and early intervention
make some of you a member of your State’s “Interagency
Coordinating Council”. Yet, it is probable that you have
little idea about either the history of these services or the intricacies
of the road map that those before you put into place for the integration
of services across agency boundaries. The ever-changing political
agendas of the moment create shifting sands that a baby’s feet
cannot balance on. Without you, there is no balance of power
between our past, our present and our future.
Top
Legislators and Health Insurers
In a very real sense, you are the key players in the successful,
nationwide system of early intervention and preschool services.
It is you job to figure out the funding scheme. That enables the
evaluators, educators, physicians, researchers, and parents to work
successfully as a team in the best interests of young children who
are developmentally disabled or at-risk for developing a disability.
You know well that special education and preschool programs are
politically charged issues. How do you say “No”?
When should you say “No”? Do these expensive programs
pay off in the long run?
You know that you should say “No” to lack of supervision and oversight. You should say “No” to programs that show no positive long-term outcome. You know that early intervention and preschool programs pay off in the long run because of the number of federal studies on the subject that you have funded in the past. It is vital that an improved system for funding services to this growing population of preschool children be established and turf wars resolved. You have taken a first step, but there is a long way to go. Identification and coordination of all available resources needs to be available to you and to your constituents. Only you can resolve agency disputes and address the concept of “payer of last resort” for the millions of children who need services and cannot afford them.
The laws for preschool special education and early intervention
make some of you a member of your State’s “Interagency
Coordinating Council”. Yet, it is probable that you have
little idea about either the history of these services or the intricacies
of the road map that those before you put into place for the integration
of services across agency boundaries. The ever-changing political
agendas of the moment create shifting sands that a baby’s feet
cannot balance on. Without you, there is no balance of power
between our past, our present and our future.
Top
The Busy Box
Each member of the early intervention (EI) or preschool (Pre-K)
team shares common memories, regardless of race, ethnicity or socioeconomic
differences. Think back to a toy that may have been in your
crib, one that had some kind of sliding door, bell, or surprise
when you opened a tiny window. It may have been screwed to
the side of your playpen or bed and called a Busy Box. It
kept you occupied so that your mother or family could work.
Early childhood special education is a different kind of Busy Box.
It is full of surprise tunnels and passageways, unexpected windows
that open and close, and bells and whistles that go off in exclamations
of joy or groans of despair and frustration. Everyone on the
team is trying to negotiate the maze of special education for the
single purpose of helping an infant, toddler or preschooler.
The process of following the IDEA roadmap and learning to work together
is much like learning how to play with a new kind of Busy Box.
We have no frame of reference, no common language to describe our
experience, and overwhelming feelings that make us cry one minute
and laugh the next.
Each person on the team approaches the 0-5 Busy Box from a different
point of view. We’ll call those viewpoints the Bottom-Up
approach and the Top-Down approach. Parents and service providers
share a bottom-up approach. They focus on the needs of one
child and how to help that child reach his/her full potential before
entering kindergarten. Local, state and federal agencies share
a top-down approach. They never see the child or the parent.
They look at numbers and dollars, and attempt to create policies
that will provide the most services for the least amount of money.
They constitute what is called ‘The Bureaucracy”.
Red tape, committees, and answering machines are all that we are
able to find unless we are persistent. But remember.
Legislators and those on committees are also just plain people,
like everyone else. And they are a part of the early childhood
team that is responsible for providing services.
This Handbook is an initial effort to help the all members of the
team successfully play with the Busy Box of the IDEA, no matter
what their approach or point of view. In the same way that
Play is the way that babies learn, so too, this Busy Box may take
some of the discomfort away from the process by playing with new
information. The Handbook helps you learn the moves and language
that opens doors, makes the horns blow, and brings light into the
window.
Top
THE STRUCTURE OF EARLY INTERVENTIONS AND PRESCHOOL SPECIAL EDUCATION
The Bottom-Up
The families and service providers are those closest to the child
in the early intervention or preschool setting. They are viewed
to be at the bottom of a long line of federal and state laws that
fund the services to the individual child and salaries to the teachers
and therapists. Together, they form what should be thought
of as the Parent-Professional Team. All members of that team
need to know that early intervention services are controlled and
supervised by the State Department of Health (DOH).
Once the child turns three, services are to be provided by the State
Department of Education (DOE). This is an important distinction
because the DOH emphasizes more medically based services.
From ages 3-5, the DOE emphasizes readiness skills for entrance
into kindergarten. The DOE frequently takes the position that
medical services are not educational services. It is generally
accepted, however, that when an educational service cannot be separated
from a medical service, the medical service becomes educational
in nature. That is a fancy way of saying that all decisions
are individually determined. Sometimes, medical services are
part of an educational program.
Top
The Parent-Professional Team
As the Parent-Professional team begins to work together, both must
ask:
- What are the unique needs and strengths of the child?
- What are the unique needs and strengths of the family?
- What specific services are needed to help the child develop and learn?
- What kind of testing is needed to better understand all of the child’s needs?
- How are all of the needed services integrated?
- How is the success of the services provided to the child to be measured?
- Who will fund these services?
Top
The Parent-Professional Team: Parents
The parent/family must be given full explanations in language they understand about:
- The nature of the child’s disability;
- The parent’s right to refuse or question recommendations;
- The services to be provided;
- The writing of the contract for services between the parent and the service provider- the Individual Family Service Plan (IFSP)
Top
Early Intervention and Preschool Steps
The process of early intervention and preschool special education always follows the same steps. Those steps are:
- Referral- Your child can be referred to the Department of Health or local school district for evaluation by a doctor, other professional, or yourself. Referral means that there is the possibility of a handicap and the need for services.
- Evaluation- Your child will be tested by licensed and certified
professionals who are trained and experienced in evaluating young
children. More than one test will be done, and more than
one professional involved. Evaluations examine all areas
of suspected disability and are not permitted to be racially or
culturally biased. The tests are to be given in the child’s
native language-or that used by the family. The tests help
the evaluators figure out the developmental and educational needs
of your child. They examine intelligence, as well as physical,
communication, social, emotional and adaptive development.
In addition to testing the child, there is also a “family-directed” assessment. The family is interviewed and a home visit made. The reason is to determine if supports are needed by the family in order to help it meet the developmental needs of the infant or toddler. This assessment is not a value judgment about culture or socio-economic status of the family. The only purpose for this assessment is to help the family to help the child when the service providers are not present. Similar assessment also occurs in preschool and for the same reasons. - Eligibility-This term means that the completed testing shows
that you have an at-risk infant or toddler under age three who
will have significant developmental delays unless early intervention
services are provided. The child is eligible for early intervention
services at little or no expense to you. Parent consent
to eligibility is required before services can be given.
Consent means that you have been fully informed about everything—the
specific meaning of the test results, what the scores on the tests
mean, what part the family plays, and your legal rights.
These rights mean a full understanding of the entire early intervention
system and your role in it. The same is true for eligibility
for preschool special education for children ages 3-5.
The services for which your child can be found eligible follow:
A. Family training, counseling, and home visits;
Eligibility means that services are to be provided at no cost to the family except where Federal and State laws require payment on a sliding scale. This relates primarily to the health services noted on the list. All educational services are to be without cost to the family for ages 3-5, including therapies that are needed for development and preschool readiness.
B. Special instruction;
C. Speech-language pathology and audiology services;
D. Occupational therapy;
E. Physical therapy
F. Psychological services;
G. Service coordination services;
H. Medical services only for diagnostic or evaluation purposes;
I. Early identification, screening, and assessment services;
J. Health services necessary to enable the infant or toddler to benefit from other early intervention services;
K. Social work services;
L. Vision services;
M. Assistive technology devices and assistive technology services;
N. Transportation and related costs necessary to receive another service on this list.
The kinds of professionals that eligibility entitles children to receive services from include:
A. Special educators;
All services are to be given in what is called a “natural environment”. This means the home or other community setting where there are children without disabilities.
B. Speech-language pathologists and audiologists;
C. Occupational therapists;
D. Physical therapists;
E. Psychologists;
F. Social workers;
G. Nurses;
H. Nutritionists;
I. Family therapists;
J. Orientation and mobility specialists;
K. Pediatricians and other physicians.
The IFSP connects all of the information from the testing and turns it into a written program for your child. The same is true of the IEP. It is helpful to think about the IFSP and IEP in two ways: (1) Process, and (2) Product.
Process
Process is the meeting(s) that you attend with the evaluators and others who work with your child. You are the most important person at that meeting because you spend the most time with the child. You can ask to see all of the written reports before the meeting, and meet with the evaluators before the meeting so that you are certain that you understand the findings and recommendations. You can write your own report if you want and give it to the group. The IFSP and is required to have a written statement about family resources, priorities and concerns. Much of this should be reflected in the “family-directed” assessment. This is not true of the IEP in that all necessary services are to be provided at not cost to the parent so that a statement of their resources is not required. There will be things that you know and feel that only you can share about your child at the meeting. In addition, you are the only person who knows whether or not the child that is described in the reports is the child with whom you live. Process is the giving and sharing of information by the members on the Parent-Professional team. The result of that discussion is a written contract between the parent and service providers which describes the exact services to be given, who will provide them, and where.
Product
The product is the written IFSP or IEP. At minimum it must include:@. Present levels of development. The strengths and weaknesses of the child and parent must be accurate and in writing.
- Statement of the family resources, priorities and concerns.
- Statement of specific services. It is important to be as precise as possible about these services so that they do not have to be interpreted. Whatever is going to be provided must be put in writing. There is no assurance that services will be given unless everything is documented in the IFSP or IEP.
- Statement of the outcomes expected by the Parent-Professional team. These statements are called “goals” and “objectives”. A goal is the general area of service, such as language, occupational therapy, or play skills. Each goal must show the child’s level at the start of instruction, and where her/she is expected to be at the end of the instruction or service. At this young age, you may want a meeting every three months in order to see if the services need to be revised.
- Criteria for measurement. How will everyone on the team know that the program is working? Criteria means the agreed upon methods of evaluating growth and improvement in the child. Some criteria will be through observation, while others use formal testing. This is an important part of the IFSP and IEP because of disputes that can arise. The parent may not see improvement in the child. The provider may see significant improvement. Or it may be the other way around. The meeting is the place to have everyone decide what will be used to accurately measure progress.
- Statement of the natural environment used. This means an indication as to whether or not the services will be delivered in the home or someplace else. It is vital to state how the services will be integrated in the natural environment, including how the parent/caregiver will independently carry over services and strategies into the home.
- Identification of the Service Coordinator. The Service Coordinator comes from the profession most immediately relevant to the needs of the child and family in an IFSP. This is not true in an IEP. For children between ages 3-5 there is often a case manager assigned from within the school district. Now is the time to remember that the agency in charge is the Department of Health for the IFSP and the Department of Education for the IEP. Family input to the decision of service coordinator or case manager is very important.
- Consent. Once you participate in developing and writing the IFSP or IEP, you must decide if you agree with all of its contents. Your signature is required in order to start the services. Your signature means that you understand everything that is written, and that you have been a full participant in the process. Even if you sign the document, you can withdraw you consent at any time. If that should occur, put your concerns in writing and request another IFSP or IEP meeting.
- Safeguards. Your signature also means that you have been told about the safeguards or protections that exist if you disagree with the professionals on the team or they disagree with you. Usually, providers think of these safeguards in terms of a lawsuit, or a due process hearing. You should know that they include the right to request an independent evaluation at no cost to yourself, and mediation, among other things. Most importantly, safeguards do not describe to you what your role is in the IFSP or IEP process. When you learn how to effectively participate in these meetings, it is unlikely that you will need to think about anything like a lawsuit. However, you must be certain that you understand about due process in early intervention and preschool special education. Your signature means that you do.
- Transition. A meeting is to occur between six months and 90 days before your child’s third birthday. It is to be scheduled by the Department of Health, which notifies the local school district that an early intervention child will soon be three and potentially eligible for IDEA services. A transition plan is to be developed between early intervention and the local school district so that services are in place on the child’s third birthday from the Department of Education. The school district may do its own testing, or use the last testing from early intervention. This is a crucial change for you and your child. Services that were not questioned before age three may become a serious problem in obtaining after three. Early planning and full knowledge of the process will help you in working successfully with the school district.
The Parent-Professinal Team: Professionals
Professionals in early childhood know better than anyone how difficult it is to accurately evaluate an infant or toddler, as well as many preschoolers. Research continues at a remarkable rate that may result in more adequate evaluation tools in the future for this age group. It is important that you specialize in evaluating the 0-2 and 3-5 populations in order to bring both experience and training to the Parent-Professional team. Your rules for evaluating children of all ages are found in the IDEA. Additional emphasis, however, is placed on the role of the family in early intervention and preschool and on evaluating the needs of the family unit.
As an evaluator, you face a profoundly complex task. In evaluating infants and toddlers, you no longer have language as a tool for measurement. The child may have physical impairments, and you must figure out how to measure without language and without certain biological markers. Similar problems are faced in working with children ages 3-5. You need to work with a team of professionals, so that together you can assess all of the necessary systems of the child and determine levels of functioning. What are you expected to do?
Top
Evaluation
In conducting the evaluation of the infant, toddler, and preschooler, the IDEA states that the following is to be done by the professional:
- Use a variety of testing tools and strategies to gather functional (does it work) and developmental (does it work when it should) information.
- Include information provided by the parents.
- Determine if the child participates in appropriate activities.
- Use technically sound instruments for the age and disability, looking at intelligence and behavior, as well as physical and developmental areas.
- Select tests that are not racially or culturally discriminatory.
- Evaluate in the child’s native language.
- Select standardized tests that are validated for ages 0-5.
- Give tests according to the instructions provided by the publisher.
- Evaluate in all areas of suspected disability.
- Review existing evaluation data on the child.
- Review information from the parents, teacher and service providers.
- Evaluate and pay particular attention to the needs of historically underrepresented populations: minorities, low-income, inner-city and rural.
- Provide a family-directed assessment of the resources, priorities and concerns of the family for ages 0-2.
- Identify the supports and services necessary to enhancing the family’s capacity to meet the developmental needs of the infant or toddler ages 0-2.
Provision of Services
As professionals involved with the provision of services to infants and toddlers, IDEA expects specific activities to be done. They are:
- To provide services under public supervision. That means that whichever public agency is the lead agency, the Department of Health or the Department of Education, it is to supervise the implementation of services to the child and family.
- Provide services at no cost to the families, except when Federal or State law provides for a system of payments by families, including a schedule of sliding fees. All fee agreements are to be written on the IFSP. No costs can be required of children in preschool programs.
- Services are designed to address the developmental needs of infants, toddlers, or preschool children in any one or more areas: physical development, cognitive development, communication development, social or emotional development, and adaptive development. There is to be a direct correlation between the diagnostic findings and the services to be delivered.
- Facilitate service coordination and case management between early intervention, Medicaid, Social Security and local school districts.
- Write an IFSP or IEP with the parents as joint members of the decision-making team.
- Implement and monitor all services as described in the IFSP or IEP.
- Schedule another IFSP or IEP meeting if a change in the level of service is needed.
- Participate in the Annual Review of the IFSP or IEP. The Parent-Professional team is to review the child’s program at least yearly. Be prepared to quantify the growth achieved by the child for the duration of the IFSP or IEP and to project how much growth is reasonably anticipated for the forthcoming year. Listen to and consider the parent input as an equal team member.
The IDEA has a specific section regarding personnel preparation and coordinated research. It offers competitive grants to improve transitional services through coordinated research and teacher training. These activities are to lead to new knowledge production and dissemination among the professionals in the field. Emphasis is placed on coordinating and integrating education, health and social services. Synthesizing of useful research is encouraged, as well as the analysis of professional knowledge bases.
Particular focus is upon ensuring that the outcome of publicly funded research is shared with those it affects and that there is a coordinated outreach across all professions to improve the field of early intervention and preschool education. The goal is the prevention of disability and the fostering of readiness to enter kindergarten
Top
The Federal Interagency Coordinating Council
The top-down structure of early intervention is designed to combine funding streams for services at the bottom of each state’s system of service delivery. That federal structure is called the Federal Interagency Coordinating Council. Its purpose is to create national policy in order to meet the urgent need of families with disabled infants and toddlers. This Council does not address the needs of children ages 3-5. The mission of the Council is to minimize the potential for developmental delay so that special education may not be needed by the time these children reach school age. Because of the overlap of medical, family and educational services for children ages 0-2, this interagency system was created to provide comprehensive and coordinated services in all 50 states.
The Federal Interagency Coordinating Council has representatives from 19 federal agencies, in addition to parents of children with disabilities. These parents are only 20% of the total membership and might not have any infants or toddlers. Their 20% comes from families with disabled children under age 12, with only one parent required to be on the Council with a child under age six. Finally, at least two representatives of State agencies are also members. One comes from a state department of education, while the other comes from a non-education agency in a state, such as a state’s Department of Health and Human Services.
What is the practical implication of the membership of this Council? The numbers tell the story. A total of 21 members are top-down people who are political appointees implementing political agendas of the party in power. Twenty per cent of that number is four. Four parents are on the Council, which has a minimum total membership by statute of 25. Only one of the 25 is a parent with a child under age six. Therefore, it becomes clear that national policy and funding is controlled by whoever is elected to the presidency or to Congress. Neither parents nor states have any meaningful representation on the federal council whose ultimate job is to figure out how the early intervention system is to be funded.
MEMBERSHIP OF THE FEDERAL INTERAGENCY COORDINATING COUNCIL
The composition of the Council appears below. (Note: Each acronym is translated below the table. They are to be read vertically in the table, rather than left to right.)
Number of Members per Agency Minus Parents
| 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 |
Names of Agencies/Members
| O | N | O | M | D | H | D | S | D | N | N | B | I | S | D | C | H | S | P | P | S | N |
| S | I | E | C | D | C | B | S | O | I | I | I | H | G | O | B | S | A | A |  |
E | E |
| E | D | R | H | A | F | D | A | A | H | C | A | S | |
D | |
B | M | H | |
A | A |
| P | R | I | S | B | A | |
|
|
|
H | |
|
|
|
|
|
H | C | |
|
|
The Federal Interagency Coordinating Council is particularly significant when one understands the amount of money available to states, graduate schools and non-profit organizations, among others, through discretionary grants.These grants are competitive and given in the areas of:
Office of Special Education Programs
National Institute on Disability and Rehabilitative Research
Office of Educational Research and Improvement
Maternal and Child Health Services Block Grant Program
Developmental Disabilities Assistance and Bill of Rights Act
Health Care Financing Administration
Division of Birth Defects and Developmental Disabilities of the Center for Disease Control
Social Security Administration
Department of Agriculture, Special Supplemental Nutrition Program for Women, Infants and Children
National Institute of Health
National Institute of Child Health and Human Development
Bureau of Indian Affairs of the department of Interior
Indian Health Service
Surgeon General
Department of Defense
Children’s Bureau
Head Start Bureau/Administration for Children and Families
Substance Abuse and Mental Health Services Administration
Pediatric AIDS Health Care Program, Public Health Service
Parents
State Education Agency (a department of education)
Non-Education Agency
- Research
- Personnel preparation
- Parent training and information
- Technical assistance
- Media services
- Technology development
- Develop a model of things to be assessed in early childhood;
- Create clear guidelines about assessing diverse populations for school readiness;
- Monitor and evaluate current testing instruments for children ages 0-3;
- Monitor and report on the long-term collection of data gathered on the status of young children.
- Outreach to historically black colleges and universities.
Top
State Interagency Coordinating Council
Similar to the Federal Interagency Coordinating Council created by the IDEA, the State Interagency Coordinating Council was also established in order to better serve individual state’s needs. This state Council is to have quarterly meetings that are publicly announced and open to the public. It is responsible for implementing a statewide system of appropriate early intervention and preschool services that are both supervisory and direct in nature. The State, from a legal point of view, is ultimately responsible for the services that are to be in place for children and families at the local level.
The direct services that each state must provide include:
- A central directory with information on:
a. Early Intervention Services statewide
b. Resources;
c. Experts;
d. Research and demonstration sites. - Timely, comprehensive and multidisciplinary assessment of the child and family;
- A comprehensive Child Find system. This means that the state has a duty to seek, find and evaluate any infant or toddler with any suspected disability;
- An assurance that each child in an early intervention program has an IFSP, or an IEP if receiving preschool services;
- That services are given in a timely manner;
- That due process and other procedural safeguards are in place;
- That early intervention services are given in a natural environment, preferably the home, while preschool services are with nondisabled children to the maximum extent appropriate.
- Create innovative strategies to recruit and retain early intervention service providers;
- Create public awareness about early intervention programs, particularly to all of the primary referral sources;
- Create a comprehensive system of personnel development, including standards for teacher licensing and certification;
- Promote fully qualified personnel, particularly in the areas
of:
a. Rural and inner city populations;
b. Transition coordination to preschool and other services. - Identify and coordinate all available resources;
- Resolve agency disputes;
- Develop a procedure for timely reimbursement of funds;
- Collect a variety of data from early intervention.
- The number of children with disabilities by race, ethnicity and disability getting services;
- Disproportionality of children and families based on race or ethnicity;
- Placement of the child/family when the services are given.
The division of the membership of the state Council is in three categories. They are (1) parents; (2) service providers; and (3) agencies involved with early intervention services. Upon closer look, however, the makeup of the state Council appears to be even more politically oriented than that at the Federal level. Parents make up 20%, service providers make up 20%, and agencies make up 60%. Additional members can be added at a governor’s discretion.
MEMBERSHIP OF THE STATE INTERAGENCY COORDINATING COUNCIL
(Note: Each acronym is explained in the list below the graph.)
Numbers of Members per Agency
| 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1+ |
Names of Agencies/Members
| PU6 | P12U | SL | PP | DOE | HI | HS | CC | O |
PU6…Parent with a child under age 6
P12U..Parents with children age 12 or under
SL…...State Legislature representative
PP…...Personnel preparation representative
DOE…Department of Education preschool services representative
HI……Health Insurance representative
HS…..Head Start representative
CC….Child Care agency representative
O……Others at the discretion of the governor of the state
Top
Conclusion
Things are very busy in the Busy Box of early intervention and preschool services to disabled children and their families. This Handbook has attempted to provide an overview for all of those in all corners of the early intervention and preschool system. It is the hope of the Melody Arons Center that it may encourage a broader understanding of service delivery so that those who need the services most- those at the bottom of the system- can receive them.
Top
For more information, contact: mac@melodyaronscenter.org