The following excerpt is taken from Chapter
of Pervasive Developmental Disorders: Finding a Diagnosis and Getting
Help by Mitzi Waltz, copyright 1999 by O'Reilly &
Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
Once you have an educational program in place, your next job is playing spy
and enforcer. You can't rely totally on the school or the school district to
monitor your child's progress or to ensure compliance with his IEP. Keep a copy
of this document and other important notes at hand, and check them against any
communications notebooks, progress reports, report cards, or other information
that comes home from the school or that your child tells you about activities,
therapies, and results.
Of course you'll want to attend all official meetings, but make a point of
just dropping by occasionally on the pretext of bringing your child her coat or
having paperwork due at the school office. If you can volunteer an hour a week
or so in the school (not necessarily in your child's classroom), even
If the school is not complying with the IEP, start by talking to the teacher
and work your way up. Most compliance problems can be addressed at the classroom
One area that can be especially difficult is monitoring the delivery of
therapeutic services. It seems like a relatively simple task, but parents across
the country report that their school district refuses to provide any type of
checklist that parents can see to make sure their child is receiving the
services listed in the IEP. If your child is verbal, just ask. If she isn't,
that should clinch your need for this essential information.
Another problem area is the administration of medication at school. Some
parents have reported refusal to deliver medication at the appointed time,
mysteriously missing pills (especially Ritalin and other amphetamines), and
missed or mistaken doses. Most self-contained classrooms have many children who
take scheduled medications, and they tend to have processes in place. The worst
medication problems seem to occur in full inclusion settings, especially if the
student is not capable of monitoring medication delivery himself. You may need
to insist on a daily checklist, and increase your own monitoring efforts.
If your IEP includes academic goals, see if there are standardized ways to
monitor progress. Too often parents are told that their child is participating
well and learning, and then discover that he has not gained new skills or has
actually regressed when an objective measure is used.
Be sure to praise your child's teacher and service providers when your child
makes progress, even if it's small. People who feel appreciated work harder.
Besides, we need to encourage the good guys!
If your child needs to have a consistent educational and therapeutic program
year round, most school districts will only provide services during summer
vacations and other long breaks if you can document his need for extended school
year (ESY) services. This requires special attention to monitoring how your
child copes with breaks in the school routine. Teachers and service providers
can help you amass the evidence you need to show that your child loses skills or
regresses behaviorally after being out of school for more than a weekend. During
breaks from school, keep your own log of behaviors and regressions, if any.
Some parents have also been able to qualify their children for ESY services
by showing that services available during the summer satisfy parts of the IEP
not addressed adequately during the school year. For example, a student might be
able to get ESY funding approved for a special summer program geared toward
teaching social skills or independent living skills to autistic spectrum
Due to recent episodes of violence, many US schools are taking a hard line on
verbal threats, aggressive or assaultive behavior, and even on the presence of
students with behavioral, emotional, or neurological disorders in schools. In
some cases, this campaign has crossed over from prudent caution to violating the
rights of special education students. For example, some districts have announced
that all assaults (a category that includes hitting, biting, and even playground
pushing) will result in police being called to actually arrest the student.
Students have been suspended or threatened with expulsion for angrily saying
things like "I wish this school would burn down" or even for singing
that traditional student song that begins with the line "Mine eyes have
seen the glory of the burning of the school," which has probably been part
of American childhood folklore for 100 years.
According to IDEA, students with disabilities are subject to discipline for
infractions of school rules just like all other students--unless the problem is
a result of the disability. For example, it would be unfair to suspend a child
with Tourette syndrome for having a spitting tic, even though spitting would
normally be a rule violation. Likewise, it would be wrong to expel or arrest a
student for biting a classroom aide if his assaultive behaviors were related to
a pervasive developmental disorder.
At the same time, schools do have a duty to protect other students, faculty,
and staff. Case law has upheld the idea that if a student cannot be safely
maintained in a less restrictive setting, the district has the right to place
the student in a more restrictive setting. The devil is in the details, of
course. Parents in these situations find they carry the burden of proving that
the district did not do all it could to keep the student in the least
If you or the school suspects that your child's misbehavior is the result of
her disability, a functional behavior assessment (FBA) and a functional
intervention plan (FIP) are the correct response. The FBA should include:
- A clear description of the problem behavior, including the pattern or
sequence of behavior observed
- Time and place when the behavior occurs (setting and antecedents)
- The current consequences attached to the behavior
- A hypothesis about the cause and effect of the behavior
- Direct observation data
The FIP should derive from the FBA and consist of guidelines for modifying
the student's environment to eliminate or improve behavior, as well as ideas for
teaching the student positive alternative behavior. Creating a workable FIP may
require trying several hypotheses about the behavior and then testing different
interventions. This procedure should be followed whenever a special education
student has a long-lasting behavior problem or has any behavior problem that
puts him in danger of suspension, expulsion, or arrest.
For example, in the situation cited earlier where a child has a spitting tic,
the FIP could include several ideas for handling the problem. The child could go
to the bathroom to spit, use a trash can, or spit into a handkerchief. Adults
could see if stress is leading to increased ticcing and then reduce stress or
try a different medication for tic reduction. For the child who bites, the FBA
could be used to find out why the child is doing so, and the FIP could provide
ways to prevent the behavior.
If a student covered by an IEP is suspended for more than ten days in one
school year or is expelled, the district is responsible for finding an
appropriate alternative educational setting immediately and continuing to
implement the IEP. Suspension of a disabled student for more than ten days
requires parental permission or a court order. The district is also required to
do an FBA and create a FIP if this has not already been done, or to take a new
look at the existing FIP in light of the incident.
Suspensions of longer than ten days constitute a change of placement, and
that means that an IEP meeting must be called immediately. IDEA does not spell
out exactly how this procedure should work, so districts may not have a plan in
place to deal with these emergency placements. Parents have reported that many
school districts respond by putting the student on homebound instruction until a
new placement can be found. This may or may not be acceptable. Delivery of
therapeutic services may be a problem on homebound instruction. Parents will
probably have to get involved to prevent the search process from dragging on too
For the purpose of these protections, the category of disabled students
includes not only those with a special education IEP or other formal agreement
with the district, but also those students whose parents have requested special
education assessment or written a letter of concern about the child to school
personnel (if the parent is illiterate or cannot write, a verbal inquiry will
suffice) before the incident occurred, students whose behavior and performance
should have indicated a disability to any objective observer, and children about
whom district personnel have expressed concern before the incident.
Expulsion is an even more serious matter. Parents must be informed in writing
about the district's intention to seek expulsion, and this document must include
clear reasons for this action, evidence, and information about the child's
procedural rights. There must be an assessment before expulsion can take place,
and parents must also be informed of this in writing. Only if all safeguards are
provided and all procedures are followed can a disabled student be expelled.
And expulsion for a disabled student does not mean the same thing as it does
for a garden-variety miscreant, who may simply be kicked out to rot in front of
the TV at home. It's more like a forced change of placement. By expelling the
student, the district has determined that the current placement is not working.
It must then find an appropriate placement, which means revisiting the IEP.
Some children with PDD-NOS or atypical PDD may not qualify for special
education services, based on the district's evaluation. You should probably
appeal the evaluation, but while you wait for the appeals process to move
forward, your child is still eligible for some special services under Section
504 of the Rehabilitation Act of 1973. These services and accommodations are
written into a document colloquially known as a 504 plan.
In fact, some special education advocates recommend that parents request a
504 evaluation at the same time they start the IEP process. This can mean asking
the 504 coordinator to attend your IEP meetings. It may confuse your district,
because it isn't a common practice, but it will save time in obtaining some
services and accommodations if services are denied under IDEA and the parents
have to appeal.
Unlike special education eligibility, Section 504 eligibility is not based on
having a certain type of disability. Instead, it is based on:
- Having a physical or mental impairment that substantially limits a major
life activity, such as learning (note that, in contrast to IDEA regulations,
learning is not the only activity that applies: 504 plans can cover other major
life activities, such as breathing, walking, and socialization).
- Having a record of such an impairment, such as a medical diagnosis.
- Being regarded as having such an impairment.
A 504 plan can put many helpful procedures in place, ranging from medication
delivery to exemption from timed tests to the provision of a classroom aide. 504
plans are usually not accorded the status of an IEP by teachers and school
administrators, but they have equal legal weight. In fact, 504 plans have a
certain advantage, because you can appeal them at a state level without going
through several district procedures first, as you must with a due process
One thing that a 504 plan can be very good for is ensuring that certain
procedures are followed in case your child has a difficult behavior episode at
school. Many children with PDDs who have progressed well enough to be in a full
inclusion setting still experience an occasional meltdown. These episodes of
anxiety, rage, or unusual behavior may occur in response to stress, fear,
teasing, illness, missed medications, or even from eating a food that the child
is sensitive to. You can develop a response plan in advance and put it in place
via a 504 plan, ensuring that it is there just in case. Other excellent uses for
a 504 plan include medication arrangements, planning for communication between
home and school, classroom accommodations, requiring certain organization
systems for homework and books, requiring in-services or special training for
personnel, ensuring socialization opportunities, and bringing in outside
agencies as part of your education team.
If you apply for 504 status and are still denied services, appeal this
decision to your state's Office of Civil Rights (OCR). If your child has a
medical diagnosis of PDD-NOS or atypical PDD, a 504 plan is the very least he
qualifies for. Even students with mild ADHD or occasional asthma attacks qualify
for services under a 504 plan. Under no circumstances should your child be
denied this limited protection, no matter how "high-functioning" he
What can you do when the school district refuses your child a free and
appropriate public education? Your options include:
- Sitting back and letting it happen (obviously not recommended)
- Advocating for your child within the classroom and the IEP process
- Bringing in an expert to help you advocate for your child
- Requesting a due process hearing
- Organizing with other parents to advocate for a group of students with
- Working with other advocates at a legislative level
- Going to court
Most school problems can be worked out with the teacher or within the IEP
system. While some school districts have a well-deserved reputation for
venality, most are simply hampered by a lack of resources and knowledge. These
are areas where an informed parent can make a difference. You can snow them
under with information about educational possibilities, and you can let them
know that the resource problem is something to take up with government funding
sources, not to penalize children with.
Bringing in an expert can do much to tip the scales in your favor, however.
All over the country educational advocates and self-styled IEP experts are
becoming available. Some of these people work for disability advocacy
organizations or disability law firms. Others are freelance practitioners. Some
are parents of children with disabilities who have turned their avocation into a
You may have to pay for expert services. Services can include researching
programs available in your area, connecting you with appropriate resources,
helping you write a better IEP, and advocating for your child at IEP meetings
and due process hearings.
The words "due process" are guaranteed to strike fear into the
hearts of school district bureaucrats--in fact, some parents have gotten a lot
of mileage out of conspicuously placing a folder marked "Due Process"
on the table during IEP meetings.
Due process usually refers to a due process hearing: an internal
appeals procedure used by school districts to determine whether or not special
education procedures have been handled properly--in other words, whether the
child and his family have been given access to the processes that they are due
under the law.
The due process hearing will hinge on whether the district has followed
federal and state-mandated procedures for evaluating a child for special
education and setting up a program for that child. Violations can include small
things, like notifying parents of a meeting over the phone rather in writing, or
major issues, like using untrained or incompetent personnel to evaluate children
or deliberately denying needed services to save money.
Issues that tend to end up in due process include disagreements over
evaluations or educational labels, provision of inadequate therapeutic services,
placement in inappropriate educational settings, noncompliance with the IEP,
lack of extended school year services when appropriate, and poor transition
Obviously, every due process case is unique. Each state also has its own due
process system. Regulations that all of these systems have in common are:
- Parents must initiate a due process hearing in writing.
- The hearing must take place in a timely fashion.
- Hearings are presided over by an impartial person who does not work for the
- Children have the right to stay in the current placement until after the
hearing (this is called the "stay put" rule).
- Parents can attend due process hearings and advocate for their child.
- Parents can hire an educational advocate or lawyer to represent them at the
due process hearing.
- If the parents use a lawyer and they win, they are entitled to have their
legal fees paid by the district.
Due process hearings resemble a court hearing before a judge. Both sides will
be asked to argue their case and present evidence on their behalf. Both sides
can call on experts or submit documents to buttress their statements. However,
experienced advocates know that, despite the veneer of impartiality, if it comes
down to your word against the district's on educational or placement issues, the
district will probably have an edge.
Some districts offer a less formal procedure, arbitration, also called
mediation. In an arbitration hearing, both parties agree in advance to comply
with the arbitrator's ruling. You can't recover your legal fees in arbitration,
and your rights are not spelled out in the law. Be very cautious before agreeing
to waive your right to a due process hearing in favor of arbitration. You can
pursue mediation while waiting for your due process hearing. That way, if
mediation works, you're done, and if it doesn't, everything is in motion for
your due process proceeding.
Parents may discover that they have a great deal of company in their
disgruntlement. Some problems in special education are systemic, and as such,
they require changes at the top. Parents in several states have banded together
effectively to get better services for their autistic spectrum children. The
organization Families for Early Autism Treatment (FEAT), for example, works to
make ABA programs and similar intensive interventions a part of state and
provincial Early Intervention programs.
You may choose to form your own organization, join an existing group covering
PDD-related issues, or work with a larger group of special education parents. If
you're looking for potential allies, see the list of organizations in Appendix
B, Support and Advocacy. You may also find allies in teacher's unions
and organizations, regular parents associations, and elsewhere in your
If you're not the kind of person who enjoys conflict, advocacy and due
process can be very draining. School districts count on endless meetings,
criticism of your parenting skills, and constant references to their superior
knowledge about your child to wear down your defenses. You must always stay on
guard, and yet be open to logical compromises and the possibility of beneficial
alliances. It's not easy, but it's necessary.
I'm the mother, I know what my child needs! Sometimes my husband is just too
easy--he would let people just have their way as not to have any type of
conflict. But I want what my daughter has coming to her, and I want it now. I'm
her strongest supporter. I will not let the school system push me around!
--Sarah, mother of two-year-old Elaine (diagnosed PDD-NOS, possible
Due process is bad enough. Going to court is absolutely, positively your last
recourse. It's something you do only when nothing else works, not even marching
on a school board meeting with a bunch of disgruntled parents.
Going to court is time-consuming, exhausting, and expensive. The outcome is
uncertain, and while the case drags on, your child may be languishing in an
inappropriate setting. Sometimes it just has to happen, though, as the
now-infamous 1994 case W.B. v. Matula makes clear.
In this case, a New Jersey kindergartner identified as E.J. was refused
appropriate assessment for special education services, given a grossly
inappropriate placement, and punished for actions and conditions related to his
disability. He was later refused appropriate interventions based on an
incomplete evaluation, from which some documents were withheld from the parents.
E.J. was later diagnosed with severe neurological impairments, including
Tourette syndrome, obsessive-compulsive disorder, ADHD, and specific learning
disabilities (he also had marked symptoms of a pervasive developmental disorder,
although this was not diagnosed). E.J.'s mother filed for a due process hearing
and won at that level, but the district refused to comply with the edicts of its
own due process hearing officer.
As a result, E.J.'s mother was forced to obtain evaluations and diagnostic
help at her own expense, provide her increasingly emotionally disturbed child
with psychiatric care at her own expense, and watch her child regress due to
improper educational placement and procedures. Eventually she won a second due
process hearing, after which she sued the district for violations of federal
education law and on Constitutional grounds under the Fourteenth Amendment,
which entitles all citizens to equal protection under the law. To the
consternation of school districts everywhere, she won her case, which included a
substantial financial judgment.
Since the Matula case, school districts have been put on notice that parents
of special-needs children can successfully pursue them beyond the due process
hearing. Besides the federal education laws and Constitutional grounds used in
the Matula case, parents may be able to ask the courts for redress under state
education laws or even contract law. There are few legal precedents as yet, but
as in the area of health insurance and autism, the number of successful legal
challenges is growing.
As noted earlier in this chapter, school districts sometimes contract with
private schools and programs to provide services that they do not. These
programs are usually not religious in nature (there are a few exceptions, such
as residential programs that are affiliated with a religious denomination), and
they must be willing to comply with district regulations.
Sometimes parents have good reasons to opt for private school placement
directly, at their own cost. Perhaps daily religious instruction is very
important to you, or your child's siblings already attend a private school.
Luckily, choosing a private school does not automatically disqualify your child
from publicly funded Early Intervention and special education services.
To receive these services, you will have to have your child evaluated and
qualified within the public system. Then you'll use the IFSP or IEP to determine
which services will be delivered, where they will be delivered, and by whom.
This can get sticky, depending on your state or local district. Some districts
are so cautious about maintaining separation of church and state that if several
children in a parochial school need speech therapy, they will send a
"speech van" to park outside the school, then have children receive
speech therapy in the van rather than allowing a public employee to help
children inside the walls of a parochial school. Other districts have no qualms
about sending employees to private school sites.
Unlike a public school, your private school itself will not be required to
fulfill any academic promises made in an IEP. The IEP is a contract between you
and the school district only. However, enlightened private schools that wish to
better serve students with disabilities are well aware of how valuable the ideas
in a well-written IEP can be. Some parochial and private schools encourage
teachers to be part of the IEP process. In some cases, these private school
representatives have entered their own goals into the IEP, usually under the
aegis of the parent. Private schools that accept any form of public funding may
be subject to additional regulations. Many are also subject to the Americans
with Disabilities Act.
Not everyone has a rosy private school experience. The school that served
your other children well may be horribly wrong for a child with a pervasive
developmental disorder. Educational programming for PDD-NOS and atypical PDD
requires a certain level of knowledge and flexibility that not all schools have,
public or private. You can advocate until you're blue in the face, but in the
end, private schools do not have to take your child.
Educating your children at home is legal in most US states. Each state has
its own regulations about who can home-school, what (if anything) must be
taught, and how (or if ) children's learning will be tested. If these
regulations include standardized testing, exceptions to the testing requirements
for disabled children are usually not written into the law. You will want to be
very careful about doing baseline testing and documenting reasons that a child
may not do well on standardized tests, if they are required.
Eligible home-schooled children are entitled to Early Intervention and
special education services. These services may be delivered in the child's home,
at a neutral site, or in a nearby school or clinic.
Some districts have programs to help home-schooling parents create good
programs for children with disabilities, while others actively oppose the
practice of home-schooling special education students and go out of their way to
make it difficult. In most states, home-schoolers can take part in
extracurricular activities at their neighborhood public school, or even take
some classes while doing the bulk of their schoolwork at home.
For children with social deficits, it's important to set up socialization
opportunities if you are home-schooling. Many home-schooling families share
teaching duties with other parents, bringing several children together for
certain lessons or activities.
If you are forced to home-school your child because your district
cannot or will not provide a free and appropriate educational placement, you may
be eligible to be paid to teach your child. This has been the case for certain
parents in very rural areas, as well as for parents in more populated districts
that could not provide a safe setting for a child with assaultive behaviors or a
tendency to run away.
Transition planning should begin in the early years of high school, when the
student's peers are beginning to gain work skills and amass credits toward high
school graduation. Special education students have a right to also be prepared
for graduation, higher education, and work in ways that fit their needs. For
most, extra support will be needed to make the transition from high school to
adulthood go smoothly. The transition plan should address high school
graduation, higher education, and work skills and opportunities. It may also
include helping the young adult apply for public assistance, supported housing,
and other necessary benefits; learn how to self-manage his medical and
psychiatric care; and gain life skills such as budgeting, banking, driving, and
Many students with PDD-NOS or atypical PDDs will be headed for a regular high
school diploma. This usually requires passing a certain number of specified
courses. If the student needs changes in the graduation requirements--for
example, a speech-impaired student faced with a foreign language requirement
might ask that the requirement be waived, or might ask that fluency in sign
language be allowed to substitute for foreign language proficiency--now's the
time to arrange for these changes.
Some students will need extra coursework to make it through high school, such
as special instruction in keyboarding or study skills. These abilities will also
help with higher education or work later on.
Some students will not be able to earn a regular diploma. A special form of
graduation called an IEP diploma is also available. If a student earns an IEP
diploma, that means he has completed all of the objectives set out in his IEP
A General Equivalency Diploma, which is earned by passing an examination, may
be an option for some other students.
Students who are headed for college may want or need to go beyond the basic
high school diploma. If your state has a special diploma for advanced students,
such as Oregon's Certificate of Advanced Mastery or New York's Regents Diploma,
check early on about any accommodations that may be needed for the examination
or portfolio process for these credentials. Some states (including Oregon, as of
this writing, but not New York) have refused to permit accommodations. This is
patently illegal and will surely be successfully challenged. If you don't want
to be the one to bring the challenge, ask instead for special tutoring in
advance of the test.
In the UK, Australia, New Zealand, and Ireland, special help may be available
to help teens pass their level exams, including modified exams in some cases.
Talk to your LEA or education department for more information about options in
Preparing for the world of work means gaining appropriate skills, such as
typing, filing, driving, filling out forms, using tools, cooking, or lifting.
These skills may be gained in school-based vocational-technical classes, in
classes taken at a community college or vocational school while the student is
still in high school, in a union- or employer-sponsored apprenticeship program,
via job shadowing arrangements or internships, or on the job. Vocational
planning is mandatory for special education students in the US by age sixteen,
and should really be undertaken much earlier.
Transition-to-work services may include moving into the public vocational
rehabilitation system, which trains and places adults with disabilities into
jobs. However, in many states the vocational rehabilitation system is severely
overloaded, with wait times for placement ranging from three months to as much
as three years. Typical opportunities range from "sheltered workshop"
jobs (splitting kindling wood, sorting recyclables, light assembly work) under
direct supervision, to supported placement in the community as grocery clerks,
office helpers, chip-fabrication plant workers, and the like. Often the person
works with a job coach, a person who helps him learn work skills and how to
handle workplace stresses. In some cases, the job coach actually comes to work
with the person for awhile.
School districts may sponsor their own supported work opportunities, such as
learning how to run an espresso coffee cart or working in a student-run
horticultural business. Many schools have vocational programs that give students
a chance to have a mentor in their chosen field, and that may include actual
work experience with local employers.
Some public and private agencies may also be able to help with job training
and placement, such as the state employment department, the Opportunities
Industrialization Commission (OIC), and the Private Industry Council (PIC).
Goodwill Industries also operates a job placement service in many larger
Students with disabilities should receive appropriate vocational counseling,
including aptitude testing, discussion of their interests and abilities, and
information about work possibilities. Parents need to ensure that students are
not shunted into dead-end positions that will leave them financially vulnerable
Students planning to attend trade school, a two-year community college
program, or a four-year (or longer) college program need information far in
advance on which high school courses will be required for entry. This is
especially important for those students with disabilities who carry a lighter
course load, as they may need to make up some credits in summer school or via
Transition programs should address the move from high school to trade school,
community college, or a four-year college program. Students are eligible for
publicly funded education and/or services until age 22 if needed. Tuition in
some programs may be covered for some students, in full or in part. Special
education services and help for students with learning disabilities are
available on campus and in the dorms at many colleges.
It's against the law to deny admission to students based on disabilities; of
course, other admission criteria generally must be met. Public universities and
community colleges may waive some admission criteria for disabled students on a
case-by-case basis if the student can show that they are capable of
college-level work. For example, if a student's poor hand coordination made
getting a high score on the SAT difficult, but the student will have a classroom
aide available at college to make up for this problem in class, she might be
admitted despite the low score. Standardized test requirements might also be set
aside if high school grades or the student's work portfolio look good.
Schools that normally require all freshmen to live on campus may waive this
requirement for a student with special needs. If living at home is not an
option, a group home or supervised apartment near campus might be. Before your
child leaves for college in another city, make sure that you have secured safe
and appropriate housing, found competent local professionals to provide ongoing
care, and rehearsed daily life activities like grocery shopping and visiting the
laundromat. You'll also want to work out a crisis plan with your child, just in
case things go wrong. She will want to know who to call and where to go.