Edge Foundation Blog

Last week we spoke about how to become a better legal advocate for yourself.  Part of that process is gaining an understanding of all of the terminology that surrounds special education.  Here’s a list of the most commonly used terms and their meanings.

504 Plan

A plan setting forth services and/or Special Accommodations for a child with a disability, pursuant to Section 504 of the Rehabilitation Act of Counterpart of an Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA).

Americans with Disabilities Act (ADA)

A Federal anti-discrimination Statute that can be used to protect students with disabilities from discrimination in pursuit of a major life activity (ie Education). The Act prohibits disability based discrimination by agencies receiving Federal funding.

Assistive Technology

An external device or functionality that seeks to remediate a learning disability, or other disorder, or to provide equal access to educational services to children with disabilities.

Attention Deficit/ Hyperactivity Disorder (AD/HD, ADHD and ADD)

This general term encompasses Attention Deficit Disorder (ADD), hyperactive, inattentive or combined types.

Behavior Intervention Plan (BIP)

A plan of positive behavioral interventions, made a part of the IEP of a child whose behaviors interfere with that child’s learning or their peers.

Code of Federal Regulations (CFR)

Set of administrative regulations established by the United States Department of Education to interpret IDEA.

Committee for Special Education (CSE)

Sometimes referred to as the special education team, that is required by the Individuals with Disabilities Education Act (IDEA) to provide an Individualized Education Program (IEP) to address the needs of children from Kindergarten through High School Graduation, or the age of 21, who qualify for Special Education Services pursuant to the statute.

Committee for Preschool Special Education CPSE

Similar in operation to the Committee for Special Education, but deals with children from two years of age up to Kindergarten.

Co-Morbid Disorder

A disorder, or Specific Learning Disability (SLA) that is present along with another functional disability.

DSM IV

Diagnostic and Statistical Manual of Mental Disorders (Fourth Addition) published by the American Psychiatric Association. It is the main diagnostic reference for mental health professionals in the United States.

Due Process Hearing (Impartial Due Process Hearing)

An impartial hearing which commences upon a formal request by either parents or LEA. The hearing is conducted before an Independent Hearing Officer (IHO) or Administrative Law Judge (ALJ) who takes testimony under oath and presides. The hearing is stenographically recorded and a written decision is required to resolve the dispute between the parties. Either party can appeal the decision of an IHO to a State Review Officer (SRO).

Family Educational Rights and Privacy Act (FERPA)

Federal Statute that ensures both the right to privacy and access of a student’s educational records. It is important to note that the protection of this law for children under 18 belongs to the parent and/or legal guardian, while that protection switches to the child at age 18, subject to a few limited exceptions schools and parents must obtain written consent of the student to share educational information.

Free Appropriate Public Education (FAPE)

See IDEA

Independent Hearing Officer (IHO)

An officer appointed by a State Department of Education to hear disputes between parents and school districts at a Due Process Hearing. Depending upon the testimonial record, an IHO has the authority to subpoena documents, and/or order either side to comply with his or her directive.

Individuals with Disabilities Education Act (IDEA)

An Educational Statute enacted by the Federal Government and codified under 20 USC 1400. IDEA governs children up to the age of 21 or up to achieving their high school diploma. The statute, now referred to as the Individuals with Disabilities Education Improvement Act, ensures that children with qualifying disabilities receive a Free Appropriate Public Education (FAPE).

Individual Education Program (IEP)

An education program required by the Individuals with Disabilities Education Improvement Act, to be designed to meet the specific needs of a disabled child who qualifies for Special Education. The IEP must contain annual goals and be reviewed on an annual basis.

Learning Disability (LD) or Specific Learning Disability (SLD)

A disability category under IDEA which includes disorder s that affect the ability to understand and/or use spoken or written language, or which may be manifested by difficulties with listening, thinking, speaking, reading, writing, spelling and/or performing mathematical calculations. LD or SLD also includes minimal brain Dysfunction (AD/HD), dyslexia, dysgraphia developmental aphasia and other disorders.

Least Restrictive Environment (LRO)

A requirement under IDEA, that special education and/or related services be provided in, or as close to a main stream environment as is possible or practicable under the circumstances.

Local Educational Agency (LEA)

The local school district responsible for providing services to a student or group of students.

Mediation

A procedural safeguard under IDEA to resolve disputes between parents and LEA’s. Mediation is a voluntary alternative to a to a due process hearing and may not be used to deny or delay a due process hearing. The medication must be conducted by a qualified and impartial mediator who is trained in effective mediation techniques. The decision of the mediator is non-binding and a disagreement between the parties can still be the basis for a due process hearing.

Obsessive Compulsive Disorder (OCD)

is classified, in DSM IV as an anxiety disorder characterized by distressing intrusive thoughts and/or repetitive actions that interfere with the individual’s daily functioning.

Occupational Therapy (OT)

is a related service used to remediate deficits or developmental problems with sensory integration and fine motor skills.

Oppositional Defiant Disorder (ODD)

refers to a recurrent pattern of negative, defiant, disobedient and hostile behavior toward authority figures lasting aat least six months.

Section 504 of the Rehabilitation Act of 1973 (504)

A Civil rights statute prohibiting recipients of Federal funding from discrimination on the basis of a disability.
Special Education PTA (SEPTA) – Branch of the local Parent Teacher Association specializing in issues concerning children with special needs.

State Review Officer (SRO)

An officer appointed by the State to review the decision, on appeal, of an Independent Hearing Officer (IHO) after a Due Process Hearing.

Traumatic Brain Injury (TBI)

is a disability category under IDEA which includes acquired injury caused by external physical force and open or closed head injuries that result in impairments. It does not include congenital or degenerative brain injuries or injuries caused by birth trauma.

Going off to college and becoming independent is difficult for everyone. There’s so much to be learned about being out on one’s own. It’s a very exciting time and most kids are pretty excited to turn 18 and are eager to take on a new level of responsibility. If you have ADHD there are two very important legal changes to pay special attention to when you turn 18:

• IDEA disability protections change
• FERPA (Family education Rights and Privacy Act) transfers privacy rights from your parent to you

Legal protections and disabilities in college

The laws that protect students with disabilities are not the same when you move on to college and graduate school. Before you graduate from high school, if you have a disability such as ADHD you are protected under the Individuals with Disabilities Education Improvement Act (IDEA). You also are protected under section 504 of the Rehabilitation Act of 1973 (Section 504). IDEA includes a concept known as “Child Find”. Child Find makes school districts responsible to seek out, evaluate and provide services for students with special needs.

When you turn 18 (or leave high school), the only protections that remain are those found in Section 504 and the Americans with Disabilities Act (ADA). IDEA and Child Find no longer applies. While still guaranteeing that you can’t be discriminated against based upon your disabilities, it is now up to you to come forward, provide documentation of your disability, and request appropriate accommodations.

In college, therefore, a working knowledge of the law, an understanding of your disability and an ability to communicate your needs to your school and instructors is crucial. Unfortunately you may not be prepared for this new advocacy responsibility because you haven’t had a chance to take a meaningful part in the advocacy process during high school. Why? Many parents have tried to protect you by taking the position that your disability should be a closely guarded secret to keep from the rest of the world. Other parents may not have involved you, their child, in working with the school, identifying your own needs and seeking services.

FERPA and Privacy Rights

Another legal area that changes with the move to college is your right to privacy. The Family Education Rights and Privacy Act (FERPA) was enacted to ensure that parents have access to their children’s educational records and to protect the privacy of students by limiting access to these records without parental consent. Both the access to your records and the restriction of that access is controlled by parents while you are underage. The privacy rights conferred by FERPA, however, automatically transfer to you when you turn 18 or you begin attending a post secondary institution, at any age. (The only exception being when you are still declared a dependent for tax purposes.)

When you become an adult or leave high school, you have control over the access to your educational records and not your parents. This sounds great, right? But if your parents have been in charge of advocating for you with your school, they will no longer be able to help you without you being directly involved. And unless you’ve already been involved with advocating for yourself you may not know where to start or even which records to access.

What can you do now to become a better advocate for yourself?

• Educate yourself on the law. A great site to find out more about the American Disabilities Act and its impact on you is Wright’s Law. http://wrightslaw.com/info/sec504.index.htm And stop back here at the Edge blog next week where we’ll go over a list of disability related terms you should be familiar with.
• If you are still in high school, get involved. Ask to see your 504 plan or IEP. Talk with your parents about what they’ve learned about what works and what doesn’t for advocating for you.
  Get copies of your evaluations and review them with your parents before you go to college so you have documentation ready when you need proof.
• Find out who the contact person in your school is before you attend. If you can’t figure it out, ask for help. A coach can be a great resource for helping you figure out how to navigate the system and to learn to advocate yourself. You don’t have to do it all by yourself!

One of the things that many ADHD publications advise at this time of year is to start the year off by letting your professors or teachers know about your 504 accommodations. Accommodations are alterations made in the classroom that students with a disability have the right to receive via a 504 plan.  Preferential seating and taking tests in smaller groups are often on the recommended accommodation list for ADHD students.

Getting accommodations can be helpful, but they don’t address the real issues of ADHD.  Let’s step back a minute and look at what makes a student successful.  Successful students usually have four main qualities that help them achieve their goals:

• Sticking with things even when the going gets tough (a.k.a. perseverance),
• Ability to delay gratification and focus on the big picture,
• Time management and organizational skills, and
• Striking the right balance between fun and work.

These qualities, which are also known as your brain’s executive functions, are actually the hallmarks of ADHD. Students with ADHD can’t depend on these skills because these are exactly the skills they are weakest in.  Getting more time on your tests isn’t going to help you with getting organized. And preferential seating won’t solve impulsivity or time management.

For most with ADHD the problem is not so much in knowing what to do, but in getting it done.  If you have ADHD and are reading this, it’s likely that you’ve already tried countless organizational systems, have been nagged-to-death by caring, but overprotective parents, and feel frustrated with yourself because you know what to do, you just can’t seem to follow through.

ADHD coaching works with your strengths to accommodate your weaknesses

There is growing evidence, both research and anecdotal, that coaching helps students learn to plan, prioritize, and persist (i.e. follow the plan). It helps students develop self determination and self confidence and reduces anxiety and feeling overwhelmed. Through being coached, students learn how to coach themselves, and actually strengthen their executive functioning skills – something that no other intervention does.

It’s not too late to get started with an Edge coach. Because many coaches work on the phone, you can “take your coach with you” wherever you go. Starting early in the school year is smart because it is surprisingly easy for students with ADHD to fall behind without even realizing it. Failing classes is a big waste of money and not a good way to start your college career.

Want to learn more?  Sign up to speak to an Edge coach today and see if you don’t find you are more on top of things than you ever dreamed possible.

Going to college when you have ADHD is challenging.  It’s nice to see that people are starting to talk about it. Two recent articles, 18 Critical Factors For Successful Post-Secondary Transition by Joan Azarava, and Learning Disabilities: Stepping Up to the Challenge in the New York Times, both give good advice about how to make the move to living away from home and adapting to the rigors of a more challenging academic environment.

ADHD students don’t need tutors as much as they need coaches

What struck us at the Edge Foundation, however, is that neither article mentioned personal coaching.  High school students have built-in structure and accountability living under their parent’s watchful eye.  In the free-wheeling life of college, however, students face a set of very predictable challenges.  Challenges that going to the tutoring center or getting extended time on their tests will not address.

As Edge Foundation founding board member, Dr. Patricia Quinn points out,  ”While most colleges provide services for students with disabilities, these programs often are not a good match for students with ADHD. While some students with ADHD may need tutoring because they have gaps in their academic skills, or note takers because they have trouble listening in a large lecture, these services do not address the basic problems students with ADHD experience in forming routines and developing a schedule to keep up with their work.” Coaching Students with ADHD: Issues and Answers (Quinn, Ratey, and Maitland, 2000)

For most college students with ADHD the problems are not so much in knowing what to do, but in getting it done. As one student said, “I know how to plan. My problem is very simple; I just don’t follow my plans. I need help making sure that I do what I say I am going to do instead of procrastinating and getting sidetracked by other things.”

ADHD college survival skills are not taught in the learning center

Ms. Azarva rightfully points out the need for students to learn how to persevere, delay gratification, and set up organizational systems that work for them. “The sooner you work on these three things, the easier college will be.”

However, these are exactly the things students with ADHD are weakest in. These skills are not taught at the learning center. These skills are best taught by a personal coach who thoroughly understands ADHD.

Most colleges don’t offer personal coaches

There are over 4000 colleges and universities in the U.S. Of these, only a few dozen offer personal coaching to their students. Yet more and more are finding that personal coaching is the critical piece that’s been missing for their ADHD students. One Director of Student Services found that he and his staff were spending most of their time helping students with ADHD manage themselves and their academics. When he learned about the effectiveness of ADHD coaching techniques, he did his research, got a grant, and put his entire staff through training. That community college is one of the very few colleges or universities nationwide that provide personal coaching for their students with ADHD. If you work with an Edge Coach, your options of where to go to college and have access to coaching open up considerably.

Find a ADHD coach now, so you are ready to go in the fall

One of the nice things about Edge Coaches is they all work on the phone. This takes transportation right out of the equation. You can start working with your coach over the summer and, because you don’t meet in an office, you can “take your coach with you” when you go off to school. You get to your appointments just by picking up the phone, so there’s no commute and you can easily fit your appointments into your schedule. And, by virtue of a phone/email relationship, you stay in much closer touch with your coach than you would if you had to go to an office. This extra contact can make all the difference in being able to stay on top of things.

Think about getting started even before you leave for college. Those first few weeks are guaranteed to be overwhelming, and your coach can help you stay on track. The numbers show that in college it’s surprisingly easy for students with ADHD to fall behind. Getting your first term grades and finding you’ve tanked is a Christmas present no one wants to get. So, start thinking now about getting ready for the fall.  Look into getting an Edge Coach to help you keep it all together.

Editor’s note:  This week we are introducing a new column, Stories from the Edge:  Real stories about how an ADHD coach helps.  Today’s post is written by Kelsey Peterson, a junior at Parson’s School of Design.

I knew from a young age that I had a learning disability.  Growing up with a dad who also had a learning disability was the best wish I could have asked for.  Ever since I was diagnosed, my dad stepped in and took control of getting me the best help he could to help me overcome my disability and stay on track with my classmates. 

My friends have always been very important to me.

Staying in my class with my friends was a huge motivation.  In order to not be held back in grade school, my dad helped me get outside tutoring and inside school assistance.  I knew I had to work twice as hard as my friends in school, but it was worth it to be able to sit in class with them. 

It was hard getting constantly tested and going to tutoring every day after school.  When I graduated from grade school I had to go to a special school for children with dyslexia.  I wasn’t happy about it because all my friends went to another school which I didn’t get accepted to. 

For a year at the dyslexia school I worked hard to be the best in my class and I met with my tutor every day.  At the end of that year I applied to Explorer West Middle School (where my friends were) and got accepted!  My hard work paid off, but it wasn’t over…

I still had to work extra hard to stay in 7th grade with my friends.  High school was the same but I got through with my friends.  When I got accepted to Parsons the New School of Design in New York City for college, I knew the hard work wouldn’t stop. 

My dad set me up with an ADHD coach to help me stay on track.

My coach helped me from getting  overwhelmed by the new school, the new city and the struggles that I was about to encounter.  With my ADHD coach I learned time management -  so I could get all my homework done and have fun with my friends.  My coach helped me plan my days and long term projects so they weren’t so daunting.  My freshman year of college I got all A’s and made friends for life.

Why I love the Edge Foundation.

When my dad was thinking about starting a new project and asked me for some suggestions, I thought back on all he had done for me.  From day one of my diagnoses he knew what to do -  he found the best help for me and helped me every step of the way without question.  I told him that I didn’t think all parents were as good as he was with dealing with children with disabilities and he should help other kids fulfill their full potentials.  He went on to found the Edge Foundation.

Looking ahead… Dyslexia and ADHD are not obstacles!

Now I’m a junior at Parsons and I’m majoring in architecture.  I love school and work with my coach to manage and overcome the struggles I still deal with as a person with dyslexia and ADD.  I plan to share some of what I’ve learned with you, so that you can see you aren’t working hard alone, and it does pay off!

Edge Foundation founder, Neil Peterson, publishes new book:  Embracing the Edge: Stories of Tenacity and Personal Power 

Self-proclaimed “serial entrepreneur” Neil Peterson founded five companies during his 40-plus year career, most notably Flexcar, the award-winning car-sharing company that recently merged with Zipcar.  Peterson’s resume is an impressive list of C-suite positions in both the public and private sectors that also includes heading public transportation agencies in Seattle, Oakland and Los Angeles. Numerous awards, including Time magazine’s “100 Newsmakers of Tomorrow” in Seattle, attest to his success. 

But over the years, Peterson says, “no one suspected I suffered from Attention-Deficit/Hyperactivity Disorder until my two children were diagnosed with ADD and ADHD in their mid teens. It was then that I learned of my own affliction when our doctor explained that ADHD, a complex mental health disorder characterized by inattention, hyperactivity and impulsivity, is hereditary.”

 Embracing the Edge: Stories of Tenacity and Personal Power, Peterson’s newly published collection of personal inspirational stories, recounts how he overcame physical and learning disabilities, as well as life’s normal disappointments, to become a successful entrepreneur, corporate executive and public servant.

Included in this memoir is Peterson’s heart-stopping story about the five-person hiking party he led that survived being swept away by a rogue wave and trapped for many hours in a cave in June 2007 on the west coast of Vancouver Island. The story describes the ordeal with his two children, a nephew and a friend of fending off hypothermia and panic as they struggled to stay calm and focused while searching for an escape route.

In 2006, Peterson decided to do something to help the millions of students struggling with ADHD.  Having seen the benefits of personal coaching in his own life and those of his children as an effective intervention strategy and an important part of a multi-prong ADHD treatment approach, Peterson founded the Edge Foundation, an organization committed to providing professional coaches for students with ADHD to help them realize their potential and their passion, and to become tomorrow’s leaders and innovators.

All profits from the sale of Embracing the Edge will go toward carrying out the vision of The Edge Foundation.  To purchase a copy of the book visit the Edge Foundation store.