Cerebral Palsy and Education
Cerebral Palsy and Education
Cerebral Palsy and Education
As a parent of a child with cerebral palsy, it is likely that you have put considerable thought into your
child's education. Depending on the severity of his or her cerebral palsy, you may be considering
special education, or you may be considering mainstreaming" your child. You may also be concerned
about testing your child's abilities, and deciding what is best for your child, or how you will afford to
pay for specialized educational services. In this section of the directory, you will find information on
schools, scholarships, government financing, and IFSPs, IEPs and IHPs.
Early Intervention
An early intervention service is one that begins before three years of age and is designed to improve
the development of a child with a developmental delay or disability. These services can include
special instruction; physical, occupational, or speech therapy; health services; family training and
counseling; or assistive technology services.
If your child has motor problems, whether or not he or she has been formally diagnosed with
cerebral palsy, it is important that he or she receive special education and therapy services as soon
as possible. Intervention is vital during this very early time (before the age of three) because the
young brain has a certain degree of plasticity, or the ability to be molded with appropriate input. At
no other stage in life does a child learn and develop more quickly as he or she does during the first
few years of life. Through early intervention, infants and young children with cerebral palsy can be
helped to develop more normal posture, muscle tone, and movement patterns; they can be taught
the movements they will later use in feeding, bathing, and dressing themselves and in doing school
work; and they can learn through play and teach experiences that are adapted to their specific
needs.
In addition to giving your baby the best chance for optimal development, an early intervention
program can provide support and guidance to your family as you learn about your baby and his
special needs. The program can help you deal with the disappointment, anger or sadness you may
feel since finding out that your baby has cerebral palsy. It can help other family members learn how
to make these early days of caring for and playing with your baby easier and more enjoyable. It can
also help you begin to learn how you can help your child become the most capable person he or she
can be. Early intervention can help you begin to focus on what your baby can do, rather than on
what he cannot do. Early intervention can help you begin to do something positive to guide your
baby down the road of growth and development.
As soon as you know that your baby has a motor delay, you should seek early intervention services.
If your baby has mild problems and you begin the intervention early, he or she may need services
during only the infant and preschool years. If your childs motor problems are severe, or if he has
other related disabilities such as mental retardation, he may continue to need special educational
and therapeutic services throughout his school years.
By beginning intervention early, you can help prevent muscle contractures and deformities that
might other wise develop and that could make it more difficult for your child to move and take care
of him or herself. You can also help alleviate the learning problems your child may have because he
cannot handle and relate to toys and objects as other children do.
Early intervention programs for children with cerebral palsy should have a family-centered
approach. Because your child depends upon your family for his or her survival and well-being, his or
her program should be designed around the goals that you identify as being important for your child
and family. For example, you may want you baby to improve his or her ability to suck and swallow so
he or she can finish a bottle in thirty minutes. Or once your child is slightly older, you may want him
or her to learn the names of his or her favorite foods, so that he or she can communicate at home
and with friends and family. You may want to work on your childs balance while sitting and standing
with support so he or she can learn to walk alone. These types of goals are known as functional
outcomes, because they are intended to help your child function as normally and independently as
possible within your family and community.
Occasionally, early intervention is approached as a child-centered service, rather than a family-
centered service. You may find a program that resembles a preschool or elementary school program
that has just been moved down to a younger level. The teacher and therapists determine goals and
objectives for children, and parents get reports of what their child is able to do with each of his or
her specialists. If your child is placed in such a program, try to find ways to show the program staff
that you as the parents are valuable members of the team. Remember, you have information about
your child relevant to the goals of the professionals, and you also have a need to know about
adaptive handling, positioning and learning experiences for your baby. Your child needs your input
and support to make the most of his or her early intervention program.
Family
Any change within a family has the potential to create stress in the family situation. When children
are involved, it can sometimes seem like a wise thing to hide the facts to avoid an emotional
meltdown. This, however, is never the way to go about bringing your children into the reality of
change. Since the unknown is always worse than the known, you should always give your children
enough information to ease their fears.
You don t need to get technical, but give them information appropriate to their age-levels. For
instance, if you are helping your cerebral palsied child with some exercises to help with their
movement and muscle tone, their siblings may be curious. Instead of trying to explain the
physiological reasons behind the exercises, you might say, They need some extra special exercises
to help their legs get stronger, or Their muscles dont work the same as yours; he cant move
around as well and he might not for a long time, so we need to help him a little more. Try not to tell
you children half-truths, even if it seems easier at the time. Even if one answer may be easier for you
to explain why your child is crying, saying hes sad when it is because of his cerebral palsy will only
further confuse his siblings. Assuring your children that their sibling cannot die for cerebral palsy is
important, as they will no-doubt quickly sense that something is wrong due to the frequent visits to
many different doctors and therapists. You should also try to reassure your child that it is okay to
feel strongly about their siblings disability, and that it isnt anyones fault that they have cerebral
palsy. Remember, a straightforward approach diffuses fear and helps your child feel important and a
vital part of the care-giving.
Once you have explained your childs disability to your other children, you should still expect to have
to re-explain it. Even once they understand that their sibling is disabled, they still may not know
what their sibling can and cannot do, and as the disabled child grows and becomes stronger or
begins to master the use of special mechanical aids and communications devices, what they can and
cannot do will change drastically. You can help this process of understanding along by periodically
pointing out your disabled childs small victories to his or her brothers and sisters. For instance,
Remember when he couldnt walk? Now he can run on his crutches! Or, Isnt it amazing how she
uses her communication board? Shes faster than all of us now! Not only will this help them to
better understand their siblings progress, it will also be positive reinforcement of their attitudes and
feelings towards their disabled sibling.
As a parent, having a new child with special needs can be overwhelming, and having other children
in the home already can lead to much competing for attention, even when the newborn is not
disabled. Be assured that this is a normal reaction for older siblings, and as long as you do your best
to balance the attention, it should eventually dissipate. Having a child with special needs means that
they may not always be able to accompany the family on special outings. For instance, if your family
has planned to go on a picnic, but there is quite a lot of hiking required to get there, it is likely your
child with cerebral palsy will not be able to go. Instead of canceling the whole family outing, as the
other siblings may feel they are suffering on the behalf of your cerebral palsied childs enjoyment,
have one family member stay home and plan a special activity for just the two of them. This will help
to avoid possible resentment by other siblings.
Having other children in the home will in the short run complicate the matter of your childs special
needs, as the stress of the adjustment may seem greater with more family members. In the long run,
however, having other children in the home can immensely aid the social development of both the
child with special needs and his or her siblings. To begin with, your childs siblings can help him or
her to develop social skills, as it is not uncommon for cerebral palsied children to have some
developmental difficulties in the realm of social interaction. Being comfortable around people closer
to his or her age will help him learn to be himself, and not feel like he is always under pressure to
perform. As for your children who are not disabled, studies have shown that having a child with
disabilities has a positive influence on the lives of children in the family. These studies have shown
that children who are actively involved with a brother or sister with a disability have a better sense
of themselves and better relationships with others. They are also more sensitive and aware of the
world around them. Furthermore, having a child with cerebral palsy in the family can result in new
perspectives and a tolerance that might not have occurred otherwise.
Children, however, are not the only members in your family equation hat must be taken into
account. Grandparents and other relatives will also need to be told about your childs disability.
There is no universal way to break the new of your childs cerebral palsy to your relatives, and the
manner in which you do so will depend greatly on your relationship with them and whether or not
they had any prior knowledge of any worries you may have had about you childs development.
However you decide to tell them, be ready for a series of reactions. Like you, they may feel grief,
anger, shock, denial or a vast array of other emotions. Your parents may feel that they are somehow
to blame for your childs cerebral palsy because of genes, or they may even attempt to pin blame on
you, your spouse or the medical profession.
After they have begun to deal with the reality of your childs disability, family members will often
overwhelm you with cures they have read about, or referrals to specialists they have heard about.
While this behavior may be unsolicited, it is rarely meant as a means to belittle your parenting
ability, and is generally just bourn out of a desire to help your child.
Grandparents in particular tend to shower disabled children with affection, and are often tempted to
smother, overprotect or spoil your child. This should always be discouraged, as it can impede normal
social development and case resentment among other family members grandchildren.
The adjustment of having a new family member with cerebral palsy is usually a large one, but is
definitely not where your familys usefulness ends. While it is important for everyone after they have
adjusted to treat your disabled child as an equal member of the family, it is also essential to the
childs progress for his or her family to be their best source of support. Growing up with cerebral
palsy is difficult, and an important role of the family is to take away any undue difficulty. It doesnt
have to be just you that helps your child with exercises and stretches, or plays with him or her to
help their skills develop. The whole family can be involved in the development of your disabled child,
and having an understanding and supportive family while growing up with cerebral palsy can make
all the difference.
Cerebral Palsy: Society & Education
The United Cerebral Palsy Associations estimate that more than 500,000 Americans have cerebral
palsy. While this is only a mere .002 % of the overall U.S. population, there are many organizations,
both governmental and private, that have been established to help people with cerebral palsy live a
successful and fruitful life. One of the biggest problems that arises with cerebral palsy is the
transition to school, and then to adulthood. As a child with cerebral palsy, it can be much easier to
get the medical help you require to develop at a more normal rate. As an adult, while you may not
need developmental assistance, you will still require money, medical attention, and, while perhaps
not necessary but still quite important, someone to share your life with.
All of these aspects of living with cerebral palsy, from your first day of school to your first day on the
job, can be quite stressful. Before your first day of school, you have to be evaluated, have and
Individual Education Plan drawn up for you, and it must be decided whether or not you will attend a
special education school or a mainstream school. And beyond that, these decisions must be re-
visited at least every year. Once you have completed your educational career, your wishes, as with
most other adults, disabled or not, will likely be to be able to live independently and get a job,
regardless of whether or not you have government funds. Once you have gone through the process
of finding a way to live on your own (at least with minimal assistance), and once you have found a
job, it is likely that you will desire companionship on a deeper level. Sexuality can be hard for people
with cerebral palsy to express, mainly because of the societal taboo of people with disabilities being
sexual, but it doesnt have to be.
This website will explore some of the issues surrounding cerebral palsy, from school and the
education system, including: parents rights, evaluations, early interventions, whether you should
attend regular or special education schools and training plans (the IFSP, IEP and IHP), to transitions
to adulthood, such as adulthood and occupations and sex and adulthood. Each section has links to
organizations and websites that may be of interest to you
Educational Issues
Education is the cornerstone of our future lives. It is the key that opens the door to all our future
opportunities. Most everything we are able to do as adults is a result of what we have learned as
children. This includes the value we put upon ourselves as human beings, as well as our social
standing and ability to be financially and domestically independent and to fulfill our ambitions. The
kind of education we receive can empower or inhibit depending on where we are taught, what we
are taught, by whom we are taught and with what end in view.
The focus of the education your child receives will impact the skills that he learns, thus deciding
what kind of focus his or her education revolves around is quite important, both in the short and
long term. If the childs education is aimed at giving him or her the ability to live independently, it is
possible that the skills that might lead him to achieving a rewarding career may be cut short, as to
make sure he or she will be able to survive independently. If your aim is to help your child by giving
him the skills through his or her education to obtain a gainful and rewarding employment
opportunity, it is possible that skills that might lead him to live independently will be overlooked to
some extent.
The early years of education usually bring about significant changes for children, including the child
with a disability. In between the ages seven and twelve, a childs rate of physical improvement has
leveled off in areas such as balance and coordination, and it is generally considered as a good point
in the childs life to refocus their efforts from physical improvement and toward intellectual learning
and growth. Children without disabilities are likewise being encouraged to concentrate more on
academics and less on play, but for the child with cerebral palsy these years usually involve coming
to term with a decreased level of physical function.
It is important to consider many factors when choosing a learning environment for your child. You
must consider that a child needs to be in an environment where he or she can learn without being
overly frustrated. It is clear that children with cerebral palsy benefit greatly from interacting with
children who do not have disabilities, but they need to be placed in an appropriate leaning
environment, as well.
The choice of school environment is often difficult. In many school districts across the nation,
parents are not given reasonable options, and this of course complicates the process of placing a
child with special needs into an appropriate educational setting. Depending on the type of cerebral
palsy and the degree of its severity, the current trend is to mainstream the child, or place the
disabled child into regular classes with non-disabled children. For instance, if a diplegic child who is
only mildly affected is mainstreamed, it allows him or her to become involved in normal activity as
soon as possible, thus giving them the opportunity to perhaps grow socially and emotionally with
their non-disabled peers. If the child is moderately to severely affected, the school may choose to
mainstream the child only in the case of art and music classes, so they may still be able to have some
integration into activities with their peers. Make certain that properly trained staff are available to
meet the needs of your child and to manage interactions with other children. It is often quite
uncomfortable, embarrassing and even belittling for a child to be pointed out as different form his or
her peers, so it is important that you strike a balance when choosing the appropriate school.
Whatever the extent of your childs disabilities, he or she will no doubt be helped quite a bit by a
little extra preparation before entering a full-time educational environment. Pre-school is an
excellent opportunity to prepare your child for a more academically-centered setting, as well as
helping him or her to learn how to interact with non-disabled children in a comfortable manner.
There is much research to suggest that the earlier a disabled child begins to interact with his or her
peers, the more likely it is that he or she will be more socially successful later in their educational
career.
A common consideration in the process of educating your disabled child is whether or not your child
has a learning disability. Many children with cerebral palsy frequently develop learning disabilities. A
child with a learning disability has an average or above average level of intelligence, but has difficulty
processing certain types of information. In addition to possibly having a learning disability, many
children with cerebral palsy are limited in their ability to communicate. Because of this, they are
sometimes deemed to have much less intellectual ability than they actually do, as teachers may not
be able to tell whether or not the child understands the lesson if they are unable to speak. Due to
this, many children with cerebral palsy are unnecessarily placed into special education programs,
many of which focus much of the time in school on different therapies, to the detriment of academic
progress. Because of this common misconception of intelligence levels and cognitive ability among
children with cerebral palsy, it is important that you enlist professionals to help you assess your
childs specific educational strengths and needs. Learning problems usually become evident in the
pre-school or early school years. Often they are a result of two other problems common in children
with cerebral palsy: visual-perception disorders or developmental language disorders. Sometimes, a
child with mild or minimal cerebral palsy may outgrow their cerebral palsy, but later develop
learning disabilities. A special education program tailored to your child, whether or not you choose
to place your child into a segregated special school or into a mainstream school, can be invaluable to
helping them minimize their learning disabilities, or even avoid them completely.
Obviously, school systems vary from district to district, city to city, state to state. Be sure to research
your choices in educating your child. Some regular schools have aides in the classrooms, so that
more attention can be given to the learning needs of disabled children, and some schools have only
one teacher for all the students. Whether or not you choose to place your child in a special school or
a mainstream school should depend on how much it will benefit your child. Because every child,
disabled or not, is unique, a special school with only disabled children may not suit your child, as the
education is not tailored to your childs specific needs. Do not assume that simply because a school
is for disabled children, it will best fit your disabled child. Likewise, even if you believe that
integration into an educational setting with your childs non-disabled peers will help his or her
development, do not force your child into regular education if it is obvious that they would benefit
from services offered at a special school.
No matter what path of education you choose for your child, be sure that it fits them, and that you
are there to support them and listen to them every step of the way. Especially if your child is in a
mainstream school, he or she may come up against bullying, ridicule and isolation. Listen to his or
her fears and concerns, and always make sure to help the child understand that it is not their fault.
Keeping the childs positive image of themselves alive and well will help them to succeed in every
facet of life.
Training Plans and IFSP, IEP & IHP
A child with cerebral palsy can face many challenges in school and is likely to need individualized
help. Fortunately, states are responsible for meeting the educational needs of children with
disabilities.
For children up to age three, services are provided through an early intervention system. States
receiving grants to provide early intervention services must draft an individual family service plan,
or an IFSP, for each family.
The IFSP is a family-centered plan, and does not solely provide service for your child with cerebral
palsy. In addition to any services your child may receive, IFSPs describe services that will be provided
to: help you learn how to use daily activities to teach your child with cerebral palsy; and help siblings
learn to cope with having a brother or sister with cerebral palsy. The procedures and strategies for
developing a useful IFSP are the same as those for developing an Individualized Education Plan (IEP).
Bear in mind that your IFSP should be reviewed every 6 months.
One important recent change to the Individuals with Disabilities Education Act (IDEA) requires that
early intervention services be provided to children and families to the maximum extent
appropriate in the childs natural environment. This requirement means that services should be
provided at your home or a place familiar to your child rather than at a center. This reflects IDEAs
strong preference for inclusion, or placing disabled children in regular schools with their non-
disabled peers.
IDEA recognizes that each child with a disability is unique. As a result, the law requires that your
childs special education program be tailored to his or her individual needs. Based on your childs
evaluation, a program designed specifically to address her developmental problems must be
devised. This is called an individualized education program, or more commonly and IEP. The IEP is a
written report that describes: your childs current level of development; your childs developmental
strengths and needs; both the short-term and annual goals of the special education program; the
specific educational services that your child will receive; the date services will start and their
expected duration; standards for determining whether the goals of the educational programs are
being met; the extent to which your child will participate in regular educational programs; the
behavior intervention programs that will be used to enable your child to participate in regular
education classrooms without impeding his or her or other students learning; your childs
communication needs; and parent concerns.
Under federal regulations, educational placements must be based on the IEP, not the other way
around. In other words, the services your child receives and the setting in which he or she receives
them should be determined by your childs individual needs, not by the availability of existing
programs.
A childs IEP is usually developed during a series of meetings between parents, teachers, and other
school district representatives. Your child may be present at these meetings if you feel so inclined as
to bring them. School districts are required to establish committees to make these placement and
program decisions. These committees are sometimes referred to as Child Study Teams or
Administrative Placement Committees.
Writing an IEP is ideally a cooperative effort, with parents, teachers, therapists, and school officials
conferring on what goals are appropriate and how best to achieve them. Because of IDEAs emphasis
on inclusion, regular education teachers are required to be on the IEP team. Preliminary drafts of the
IEP are reviewed and revised in an attempt to develop a mutually acceptable educational program.
The importance of your role as parent in this process cannot be overemphasized. You cannot always
depend on teachers or school officials to recognize your childs unique needs. To obtain the full
range of services, you may need to demonstrate that withholding certain services would result in an
education that would not be appropriate (as IDEA has specified a childs right to a free
appropriate public education). For instance, if you want an academic-oriented program for your
child, you must demonstrate that a program that only emphasizes vocational or functional skills is
not appropriate given your childs skills, abilities, and needs.
IEPs should be very detailed. You and your childs teachers should set specific goals for every area of
development, and specify how and when those goals will be reached. Although the thought of
specific planning may seem intimidating at first, a detailed IEP enables you to closely monitor the
education you child receives and to make sure he or she actually receives the services prescribed. In
addition, the law requires that IEPs be reviewed at least once every year, and more often if
necessary, to ensure your childs educational program continues to meet her ever-changing needs.
Because your child has special needs, his or her IEP must be written with care to meet those needs.
Unless you request specific services, they may be overlooked. You should made sure school officials
recognize the unique needs of your child- the needs that make him or her different from other
children with disabilities.
Before the IEP meeting, you should do some preparing by exploring available educational programs,
including public, private, federal, state, county and municipal. Try attending some classes at your
local mainstream school, and see if you think your child with cerebral palsy would benefit from
attending school there. Also, before the meeting you should collect a complete set of developmental
evaluations to share with school officials, and look over them yourself. And last, but most certainly
not least, decide for yourself what short-term and long-term goals you think are appropriate for you
child, and in what kind of program you think best suited for him or her. After youve made this
decision, suggest it at your childs IEP meeting.
To support placement in a particular type of program, you should collect evidence about your
childs special needs. Then, support your position that a particular type of placement is appropriate
by presenting letters from physicians, psychologists, therapists (speech-language, physical, or
occupational), teachers, developmental experts, or other professionals. This evidence may help to
persuade a school district that the requested placement or services are the appropriate choices for
your child.
When the time has come for your IEP meeting, do not attend it alone- bring a spouse, lawyer,
advocate, physician, teacher or whomever you would like for support, including, of course, your
child. While at the meeting, try to keep close track of everything the IEP team says, and take notes if
possible, always get everything in writing and be assertive. Children with unique developmental
challenges need parents to be assertive and persuasive advocates during the IEP process. This does
not mean that school officials are always adversaries, but does mean that you are your childs most
important advocate, because you know him or her best.
Many years down the line, when your child has finished his or her educational career, it will be
important for you as a parent to help you child to set up a career. In much the same way that an IEP
is developed, and in much the same way that an IEP helps your child get the most out of his or her
education, when your child is ready to enter the work force, he or she will no doubt benefit from an
Individualized Habilitation Plan, or an IHP. The IHP sets forth the services needed to enable a person
with a disability to work productively, as well as the services needed to live independently, if
desired. For instance, if a personal assistant is required for a person with cerebral palsy to help with
cooking meals, cleaning house and grooming so that he or she can live in the community, it should
be included in the services prescribed by the IHP. Because the trend to include personal assistants in
services is fairly new, however, public funding is still spotty. While it is improving, it is not
guaranteed that your state covers it through Medicaid, as it is still optional for them to include it or
not.
Parent and Individual Rights
As a parent of a child with cerebral palsy, it is important to understand the laws that apply to your
child and you. There are laws that guarantee your childs rights to attend school and to lie and work
in the community; laws that can provide your child financial and medical assistance; and laws that
can govern your long-term planning for your childs future.
If you know what your child is legally entitled to, this knowledge can help to make sure that your
child receives the education, training and special services he or she needs to reach his or her
potential. As well as knowing that you are entitled to governmental support, you are also entitled to
be treated with the respect every person deserves, regardless of disability. Knowing what is
considered as illegal discrimination can allow you to assert your or your childs rights as dictated by
law. Also, if you know that, at times, laws can cause problems for families of children with
disabilities, you can avoid making unsuspecting mistakes that could be a detriment to planning your
childs future.
While there may be quite a few things you will encounter that in raising your child that are exclusive
to your child and cerebral palsy, there are no laws that deal solely with cerebral palsy. The laws that
govern the rights of a person with cerebral palsy can be found along with the same laws that pertain
to all disabled persons. Because the laws that provide your child with the right to an education are
so complex and numerable, and as they differ from state to state and locality to locality, this is only a
brief discussion of the most important. For more information on the particular laws in your area,
contact the United Cerebral Palsy Association (UCP), the national office of The Arc (formerly the
Association for Retarded Citizens), or local governmental offices.
Your childs rights to an education are among the most essential rights people with disabilities have
been granted. Until the middle of this century, children with disabilities were generally excluded
from public schools. Often, they were sent away to residential schools, homes and institutions,
or their parents grouped together to form private part-time programs. In the 1960s, federal, state
and local governments began to provide educational opportunities to children with disabilities;
these laws have continued to expand and improve to present day.
Perhaps one of the most influential laws to affect a disabled childs right to an education is the
Individuals with Disabilities Act (IDEA), first enacted in 1975 and extensively amended in 1997 and
administered by the U.S. Department of Education (DOE). IDEA has vastly improved educational
opportunities for almost all children with disabilities. Under IDEA, the federal government provides
funds for the education for disabled children for each state that has a special education program
that meets the standards established by IDEA and the regulations issued by DOE. To qualify for
federal funds, each state must demonstrate that it is providing all children with disabilities a free
appropriate public education in the least restrictive environment that meets IDEAs standards. At
a minimum, states that receive federal funding under IDEA must provide approved special education
services, opportunities for participation in the regular curriculum (called inclusion or
mainstreaming), and a variety of procedural rights to children with disabilities and their parents. The
allure of federal funds has been attractive enough to induce all states to provide special education
for children with disabilities, including children with cerebral palsy.
IDEA, however, has its limits. The law only establishes that the minimum requirements in special
education be met by every state that desires federal funding. It does not require states to adopt the
most ideal educational programs for children with disabilities, and neither does it require uniformity
throughout the programs in the U.S. The special education programs will always vary by state to
state, including such variables as the student to teacher ratio and what teaching materials are
available. State can create special education programs better that what is required by IDEA, and
some have. Check with the placement or intake officer of the special education department of your
school district to determine exactly what classes, programs and services are available to your child.
One of IDEAs most fundamental aspects is the guarantee of free appropriate public education.
Free means that no matter what your ability to pay for your childs education is, your child is
entitled to his or her education at public expense, including all special needs your child may have. If
the state cannot provide an appropriate environment for your child to learn in, it will place that child
in a private program at the states expense. If you decide to place your child in a program that the
state has not approved for your child, however, you may have to bear the full cost of his or her
special education.
While IDEA may not require states to establish educational programs that are the best money can
buy, if they receive federal funding, there are still goals that must be met. IDEA requires that states
receiving federal funding achieve educational success. They must establish measurable
performance goals for children with disabilities that lead towards economic independence,
community living, and employment as adults. IDEA holds each state responsible for the effectiveness
of its special education program.
Only you know what your child is capable of, and only you can assure that your child receives the
most appropriate placement and special services. Under IDEA, parents and teachers are required to
work together to design an individualized education program (IEP) for each child.
Under IDEA, an appropriate education consists of special education and related services. Special
education means instruction specifically designed to meet the unique needs of the child with
disabilities, provided in a range of settings, including regular education classrooms, separate
classrooms, home instruction, or instruction in private schools, hospitals or institutions. Regular
education teachers, special education teachers, therapists and other professionals, all provided by
the school district at public expense, are responsible for delivering these educational services. In
addition, supplementary aids and services can be provided to enable a student to participate in
regular education classrooms. Related services are defined as transportation and other
developmental, corrective, and supportive services necessary to enable the child to benefit from
special education.
IDEA also specifies that the child must be educated in the least restricting environment possible. The
least restrictive environment is the educational setting that permits your child to have the most
contact possible at school with other children who do not have disabilities as well as involvement in
the general curriculum. In this sense, IDEA is specifically intended, at least in part, to end the
historical practice of isolating children with disabilities either in separate schools or out-of-the-way
classrooms and is intended to open the doors of your neighborhood school to your child with
cerebral palsy. Once the doors are open, IDEA requires your school to find ways to truly integrate
your child into the typical educational life.
A child is covered by IDEA from the age of three until at least the age of 18, and in states that allow
non-disabled people to attend school until 21; the same is true for your child with disabilities. Under
IDEA, a state must provide more than the traditional 180-day school year when the needs of a child
indicate that year-round instruction is a necessary part of a free appropriate education. In most
states, the decision as to whether or not your child should receive year-round instruction is based
greatly on whether or not your child will regress, or lose a substantial amount of the knowledge
obtained in the school year. If so, summer instruction will be provided at the states expense. Some
children with cerebral palsy can regress without year-round services, and if this is the case for your
child do not hesitate to request year-round instruction.
IDEA can only go so far as to provide the right to an education for your child. You must carry out that
opportunity and make sure your child receives the education and special services he or she needs.
Sexuality and Cerebral Palsy
Western culture has always portrayed sex as taboo for anyone, disabled or not, and for many years
it was assumed that people with disabilities were asexual, or that they did not have a desire for
sexual intimacy. This, of course, is quite false. Disabled or not, every person has sexual urges that are
completely biological and inevitable. Many parents feel quite awkward toward discussing the topics
of sex, sexual maturation and masturbation with their adolescents. This can be especially
uncomfortable if your child is physically restricted, as it is possible that they will be physically unable
to have intercourse. Some people with cerebral palsy tend to have severe muscle cramping and
spasms during intercourse, and so it can be more painful than pleasurable in many cases. This does
not go for all cerebral palsied persons, as there are many men and women with cerebral palsy who
are married and have children.
Even if the actual act of intercourse is not possible for the severely disabled person, sexual intimacy
is still possible, and can be quite satisfying. Things such as sensual massage can lead to orgasm, as
well as other sexual aids and techniques. When a person is unable to express him or herself sexually
(unless it is by choice), they often do not feel like a whole person. Many times non-disabled people,
especially teenagers, may discriminate against disabled people, in that they may consider them as a
good friend, but would never consider them as a partner or lover. This can be a very painful cycle of
rejection for many people with a disability, and helping your child to have a strong self-esteem is one
of the best ways to combat any negative effects such discrimination might have on them.