• Monitoring progress
  
• Extended school year services
  
• Dealing with behavioral dilemmas
  
• Suspension and expulsion
  
• 504 plans
  
• Taking on the school system
  
• Due process
  
• Public advocacy
  
• Going to court
  
• Private schools
  
• Home-schooling
  
• Transition planning
  
• Graduation
  
• Work
  
• Higher education
  

Monitoring progress

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 better.

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 level.

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!

Extended school year services

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 individuals.

Dealing with behavioral dilemmas

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 restrictive setting.

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.

Suspension and expulsion

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 long.

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.

504 plans

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:

1. 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).
2. Having a record of such an impairment, such as a medical diagnosis.
3. 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 complaint.

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 may be.

Taking on the school system

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 similar problems
• 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 vocation.

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.

Due process

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 planning.

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 district.
• 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.

Public advocacy

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 community.

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 oral-motor apraxia)

Going to court

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.

Private schools

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.

Home-schooling

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

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 cooking.

Graduation

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 for graduation.

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 your area.

Work

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 cities.

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 as adults.

Higher education

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 correspondence courses.

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.