Information, Events, Tips and Advice for Parents of Special Needs Children in Pensylvania

Do You Need a Non-Attorney, Education Advocate?

Although parents often can obtain the services their child needs at school through their own efforts, they may sometimes need a helping hand from someone who "knows the ropes." One option is to bring in a non-attorney, education advocate. An education advocate can help you get organized, get ready for an IEP meeting or other school meeting, attend the meeting with you, and follow up as needed. In some cases, if they think you need an education attorney, they will discuss that with you. Think of it this way. If you were about to begin a hike of many miles through unfamiliar terrain, would it be helpful to have someone who had traveled that path many times before, who could help guide you through it and keep you from getting lost?

We sometimes receive phone calls from parents who don't need an education attorney now, or don't want to incur the cost of an attorney now, but need some one-to-one guidance from a knowledgeable person. In those cases, we may recommend a non-attorney education advocate and, for this purpose, we list education advocates in eastern and central Pennsylvania at our website (http://www.educationlawadvocates.com/CustomPage.shtml). As shown, some of those advocates charge a fee; some are employed by organizations that do not charge a fee. Some of the advocates are moms of special needs kids themselves, who learned to advocate for their own children and now work to help other parents negotiate the special education "maze."

Although we feel fortunate to know and work with many education advocates, we do not know everyone on that list. So if you need an advocate, we encourage you to call more than one in your area and ask questions that will allow you to make an informed decision about whether a particular advocate is a good fit for what you need.

Pat Howey's 10 Tips for Education Advocates

Pat Howey is a well-known, non-attorney, education advocate from Indiana, who works with parents, writes and does advocacy training in association with Pete and Pam Wright of Wrightslaw, one of our favorite "national" websites. (www.wrightslaw.com). We like Pat's article in the 12/02/08 issue of the Special Education Advocate, the free Wrightslaw newsletter, entitled "10 Tips for Good Advocates," so we are passing it along to you here. (We encourage you to subscribe to it at http://www.wrightslaw.com/nltr/08/nl.1202.htm, where you will also find Pat's article).

As you read through Pat's tips, keep two things in mind. First, in our view Pat's approach generally will lead to better results. We aren't saying it's the only approach or that a different approach may not be necessary sometimes. We're just saying that we think her approach, if followed, will lead to better results in most cases. If you are considering bringing on an education advocate, we encourage you to find out from them in advance what kind of approach they use in their practice. Second, although Pat's "tips" are directed primarily at people who work as education advocates, remember that you as a parent are an advocate, too. We think you as a parent could benefit in most cases from following her approach as well.

So here are Pat's "10 tips for Good Advocates":

1. Good advocates facilitate the IEP process.

Advocates must set an example for the entire IEP Team. They must be a role model of behavior for the parent. Challenging school experts, demeaning school staff, or being inconsiderate or impolite, will not advance the child's cause. Your goal is to get better school services for the child. Good advocates ask questions and make valuable suggestions to advocate for a child. It is okay to disagree. It is not okay to put down or verbally attack someone.

2. Good advocates know the child and understand the disability.

Do your homework before you attempt to advocate for the child. Research the child's disability. Be ready with ideas about instructional methods that are research-based and peer-reviewed. Meet the child and the family in the home environment. Put off making recommendations until you fully understand how the child's disability affects his or her life and education.

3. Good advocates try to reduce existing barriers between the parent and the school.

Your goal is to bring the school and the parent closer to agreement. Good advocates explain to parents that negotiation is part of the IEP Team process - and a part of life! Pouring gasoline on a fire ensures that everyone gets burned and does not improve the child's lot.

4. Good advocates are willing to admit mistakes and to apologize.

No one is perfect. We all make mistakes. Good advocates are not afraid to say they are sorry when they make a mistake. They may even write a note to everyone involved, apologizing and asking for forgiveness.

5. Good advocates hone their listening skills to a fine edge.

You must learn to listen to everything that others say. Sometimes, what others do not say is most important. If you are not listening, you may not hear what others say and what they do not say. Good advocates repeat and paraphrase what they have heard to avoid misunderstandings. They ask others to verify that they understood correctly. Good advocates ask follow-up questions. They do not interrupt even when they are faced with rudeness and discourtesy.

6. Good advocates learn the art of negotiation.

Remember the old saying, "You catch more flies with honey than you do with vinegar?" Learning to negotiate is not a sign of weakness or that the parent's position is not valid. Negotiation is an art that good advocates polish to a fine finish. Successful negotiations allow everyone to come out of the IEP Team Meeting feeling like winners. Brice Palmer, noted advocate from Vermont, says it best: "Good advocates learn to develop a language of persuasion rather than a language of positional combat."

7. Good advocates understand special and general education law and the interrelationship between these and other laws.

The law is not a static entity. It changes every day through court decisions and other types of clarifications. Good advocates review special education law often. They know that answers to frequently asked special education questions may be found in other unrelated laws. For example, Department of Agriculture regulations address special dietary requirements for children. A State's Department of Health regulations may address classroom size, lighting, and window light. General education law may provide insight into class size and case load issues. The U.S. Justice Department provides guidance on bullying and harassment. Good advocates understand that school policies often omit the special needs of students with disabilities. School emergency plans may not address the needs of children in wheelchairs or children who are deaf or blind. Good advocates learn to research many different laws.

8. Good advocates know that understanding the law is different from quoting the law.

Good advocates know the law but they understand that it is often ineffective and counterproductive to quote it. Pete Wright once said, "[A] parent should never quote law, even if they are an atty, it simply polarizes relationships, instead seek "help" in better understanding something best left to rocket scientists and lawyers. -- Pete Wright Deltaville, VA USA - Tuesday, March 02, 1999 at 20:55:35 (EST).

9. Good advocates understand the importance of ethical behavior in their practice.

There is no Code of Ethics or Professional Responsibility for special education advocates. Advocates have nothing to look to for guidance and there is no governing body to oversee their practice. There are no penalties for advocates who act unprofessionally or unethically. This does not suggest that advocates should disregard ethics and engage in irresponsible behavior. Good advocates understand that the professional respect of the IEP Team is a key to successfully assisting parents achieve an appropriate education for their child.

10. Good advocates treat others the way they would like to be treated.

No one likes surprises. Members of IEP Teams do not respect or trust advocates who drop bombshells. Taking the team by surprise is likely to backfire, especially if the team "captain" is a gatekeeper or is determined to be the one who runs the show. Making the IEP Team Meeting a war of wits does not benefit the child nor does it facilitate the process for the parents.

Got a question about advocacy? Give us a call or email us. We would be glad to help.

A Short History of Special Education Law - and the Parent as the "Missing Link."

Years ago, in the 1960's, the schools' job was primarily to "teach" and to prepare "typical" kids for college or employment. No-one had heard of "ADHD" then. Only a few had heard of "autism." Far less was known then about "specific learning disabilities" and the advanced methods of reading remediation. Children who were thought to be a little "slower" than their peers were placed in special education programs, which sometimes included training in "auto mechanics" or other vocational training, as well as remedial assistance in reading and math. Millions of children with more severe problems, including disciplinary problems, were sometimes deemed "uneducable," and excluded from school entirely.

The Sherriff Comes to Town!

The passage of the "Education for All Handicapped Children Act" in 1975 required public schools accepting federal funds to provide students with mental or physical disabilities with a "free appropriate public education" (a "FAPE"). Schools were required to identify and evaluate disablied children and design an educational plan based on their unique needs that was reasonably calculated to allow them to make meaningful progress in school from year to year.

The new law recognized the key role to be played by parents in shaping the programs for their special needs kids at school. Therefore, it required parent participation in the evaluation and planning process. It required schools to notify parents before evaluating a child or changing an IEP, and to advise them of their legal rights. It included procedures for deteriming whether serious disciplinary incidents were caused by the child's disability. It empowered parents to challenge a school's decisions respecting their child, either informally or through formal methods, such as mediation or filing a "due process" action using the state's administrative agency procedures. It gave parents the right to appeal adverse decisions affecting their special needs child to state or federal court. It provided for an award of "compensatory education" if a school district failed to provide a disabled child with the "appropriate" education that the law required. In some cases, a school district could be required to pay a disabled child's tuition at a private school that could meet the child's needs.

In sum, the new federal law required public schools to take on a much broader mission to find and assist children with special needs. Over the years, the basic structure set out in the original Education for All Handicapped Children Act of 1975 has remained in place, despite changes in the law. The current law, known as the Individuals with Disabilities Education Act of 2004," covers children as young as three and young adults up to age 21, so long as they have not graduated. Federal and state law work together to protect the rights of special needs kids and their parents. So-called "gifted" children now have rights, too, under state law in Pennsylvania.

The federal and state special education laws are based on a very simple principle, which Congress stated as follows:

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improvidng educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic selt-sufficiency for individiauls with disabilities.

20 U.S.C. Section 1401(c)(1)

(http://idea.ed.gov/explore/view/p/%2Croot%2Cstatute%2CI%2CA%2C601%2C).

The End of the "Little Red Schoolhouse"

So it's not just your grandmother's "little red school house" anymore. Now, schools have the legal duty to find, evaluate, and assist disabled children to benefit from an education and training. This includes providing "specialized instruction" and "related services" to special education students, such as psychological evaluation, occupational, speech and physical therapy, and social skills training, where necessary, as well as the more traditional educational instruction and remediation. At the IEP table, you now may find a psychologist, a therapist, or a "transition" specialist, as well as a special ed teacher and a "regular ed" teacher. Or sometimes you may find an "education advocate" or lawyers for the parents and the school district at that table. That is because disabled children now have a legally enforceable right to a free appropriate public education that they did not have many years ago.

While the schools (and courts) have been adjusting to this vastly expanded role, there also has been an explosion in the number of children diagnosed with "special needs' that qualify them for "special education" or other special treatment by the schools. Similarly, new and expanded theories and methods for educating and treating children with particular disabilities are being developed, such as the TEACCH and Lovass methods for treating autism or the "multi-sensory" language training programs, such as Orton-Gillingham and the Wilson Reading methods. There also is an increased emphasis on "research-based" approaches, "response to intervention," and more accurate and "scientific" ways of monitoring and recording the results of education and treatment. And while the schools' role has been expanding, the funding for these services has not kept pace.

With all of the laws and changes, and the schools' vastly expanded role, is it any wonder that the system's parts do not always mesh as they should? And that you as a parent may sometimes feel confused and overwhelmed? For some parents, entering the school building for an IEP meeting can seem a little like traveling to a strange country late at night. Many "tribes" occupy that country. There's the "special education" teacher tribe, the "school administrator" tribe, and the "regular ed" teacher tribe. The school psychologist, occupational therapist, speech therapist, physical therapist, and personal care attendant ("PCA") all come from different tribes. There are still other tribes comprised of outside tutors, therapists, psychologists and psychiatrists. There is even the "lawyer" tribe, who sometimes speaks a strange language known as "legalese" and refer to laws that only they seem to understand.

Many of these "tribe members" have lived in this place for a long time. They are familiar with its customs, even if they cannot always understand each other. You see, they studied different things in college. They may each view your child through a separate "window," based on their education, training, experience, life history, and assigned role in the educational system. Sometimes, they may see your whole child through their "window"; sometimes, they may see only the part closest to their window. Sometimes, they may think they "see" your child, but it's really a different child they see or a composite of many children that they mistake for your child.

Most of the teachers and others at school do the best they can under challenging circumstances, in our view. But there are lots of moving parts in this system. It doesn't always work as we want it to. And sometimes, it is not easy to figure out what programs would provide a child with what she needs. Experts may disagree about not only the kind of programming a child needs, but also about the nature of his disability.

The Parent as the "Missing Link."

The one constant as you and your child move through what may sometimes seem like a strange "land" from year to year and grade to grade is . . . you! That is why the law encourages your active participation in the process. Teachers, administrators, treaters and other "professionals" may come and go, but you as the parent are the "missing link" who provides continuity and information to the school team from year to year. You ultimately must take the responsibility for getting clear on what your child needs and ensuring that your child gets those services. Unless you understand and participate in the process at school, you cannot fulfill that role.

It is not easy, of course. As a member of the "parent" tribe, you may not always be completely welcomed by the "school" tribes who inhabit the school building. They have their own customs, rituals and ways of doing things. In some cases, they may resist you and your new ideas for how to help your child. Of course, they may also have important knowledge and ideas about your child, which may be different from your own. In our view, you should listen carefully to what they have to say. But, in the end, you as the parent must decide whether your special needs child is getting what she needs.

Don't be overwhelmed! You will never know "everything." No-one can. But focus on the "fundamentals." Try to understand how the system works. Prepare for school meetings. Follow-up. Document important communications with the school in a quick email. Read and learn about your child's disability. Review and understand your child's school evaluation and IEP. If you need help in understanding those documents, get it. Learn about available resources that can help you become a more effective advocate for your child. Be proactive, persistent and polite. Focus on getting clear on what your child needs and how to get it. Monitor the results so you can know whether an approach is working or not.

Stay involved. It's not easy - but it will be worth it!