By Billy Pickens, Intern
As a senior in college, I have had the pleasure of taking many classes in which I received a great deal of powerful information. One thing that made every college class worthwhile was the fact that, no matter how important I felt each class was, I still learned a valuable lesson that would leave a lasting impact on my life. Some of these lessons were immediately recognizable. However, there were some that did not occur to me as extremely valuable until I really thought about them.
One specific example of the latter was a lecture given by my General Psychology professor. In this lecture, we were discussing the history of mental illness in America and how it has been dealt with over time. My professor made the point that prior to scientific research and progressive movements within the disability community, those with disabilities were often seen as useless or less than human. Many were seen as being under the spell of a demon and therefore were locked away, abused or even killed simply because they did not live up to the standard of what was considered “normal.”
While I found this history both riveting and disheartening, it was a story I had heard too many times before as a person with a disability. For that reason, at first I did not see it as anything inspiring or thought-provoking. It was not until I began serving on the Student Advisory Board for my school’s Disability Services that these stories gained more impact and became more important to me.
As a student advisor, one of my tasks is to go into classrooms throughout my school and talk to students about how I have managed to live a normal, productive life despite my disability. My peers and I share stories of how we had been underestimated, written off and treated unfairly by many who had negative perceptions of persons with disabilities. It was through our stories, and students saying that our testimonies really changed their own perspectives, that I was reminded of my professor’s lecture.
I began thinking more about my own journey and how I found myself in college striving for employment, yet many of my friends with my disability are still relying heavily on the support systems around them. While pondering the perceptions of the world and the history of disability culture, I came to the conclusion that one of the key reasons why many with disabilities struggle to flourish in today’s society is society’s attempt to change a person’s disability instead of adapting to it. However, I believe that this is not so much the fault of society in general, but the support system of the person with a disability.
From the time I was born, my parents were prepared for the possibility that I would be totally blind with gradual hearing loss. There had been a slight hope that maybe I would be born completely normal. However, being that my condition was genetic and the chance of me inheriting the gene was extremely high, my parents knew that this was highly unlikely. Even so, I was raised normally, participated in activities relevant to my age group and attended public school.
There was always the lingering conversation of restoring my sight. I remember from a young age attending conferences centered around vision restoration. While I willingly agreed to attend these conferences with my parents, restoring my sight was hardly ever a desire of mine. What is the point? I am achieving my goals despite my blindness and have no time to focus on changing it.
I say this to say that if you are a person who has a disability or are associated with someone who has a disability, the last thing you should do to help that person is try to cure them of that disability. I am not saying that if the opportunity to cure someone of a disability arises you should not benefit from it. However, you should focus more on adapting to the present situation than trying to find a cure. In my opinion, this is the most important characteristic of someone who overcomes obstacles and turns perception into progression.
We have come so far as a culture in awareness of our value to society. We are showing the world each day that we can break down barriers, and do it with our disability. People like Helen Keller, Louis Braille and others were not respected just because of their disability, but because of what they chose to do with that disability. Those who embrace their disabilities and use them as motivation instead of defeat will have the main ingredient in conquering any obstacle that comes their way. Likewise, people who support those with disabilities may experience a shift in their own perspective when they focus more energy on teaching skills to successfully adapt to the environment. Through this approach, they will see how obstacles are conquered and real progress is made.
By Debra Pickens
“If you don’t ASK, they won’t TELL!”
Have you ever had a feeling in your gut that something wasn’t right? When the Director of Disability Services told me that they didn’t know the Braille special math code, and that my son should drop College Algebra, I knew immediately why I had that feeling in my gut. “Here we go again, I thought. Another battle to fight!”
My son Billy was born on February 13, 1997 with Norrie’s Disease. He is totally blind with progressive hearing loss. Billy received early intervention services in the home and daycare. We established his IEP when he turned three and most of his one-on-one Specialists transitioned with him to public school, where they had a Visually Impaired (VI) resource room with a full-time Teacher of Visually Impaired (TVI).
Billy learned how to read and write Braille early. With the help of the TVI, Braillewriter and Braille Note taker, Billy was on the A/B Honor roll throughout his 12 years of public school. He graduated with a 3.5 GPA and a strong desire to attend a four-year college. He knew that there would be obstacles, and he had learned how to advocate for himself. What he didn’t know is that he would not have ACCESS to his academic materials in a timely manner when school started.
We met with The University’s Disability Services in late June and Billy’s counselor emailed his accommodation letter out to all of his professors early July. The letter told them “What” to do but not “How” to do it. When school started at the end of August, we found that his College Algebra class would be conducted mostly online, which was not in the course description when he registered. If you don’t ASK if it is an online course, then they want TELL you. We immediately reached out to the Director of Disability Services for guidance. Her advice was to drop the course until they could figure out how to get him ACCESS to the material. We knew that was not an option. He only had registered to take 12 hours and if he dropped the course, then his financial aid would not be granted.
The second suggestion was to audit the course or take an incomplete until he could obtain ACCESS to the material. Billy decided that he wanted to try using a one-on-one personal assistant to read to him and assist him in navigating the online system. This did not work because his one-on-one personal assistant did not know how to teach him College Algebra. We are still working with the Director of Disability Services to receive his quizzes and tests in Braille, which is his preferred method of communication.
The next battle was with his Theater class. The “Plays” were emailed to him as photo copies or in a pdf document. The documents would not translate to Braille on his Braille Note taker. We didn’t know to Ask them to convert to a format, which could be saved on a digital card and transferred to his Braille Note taker for him to read it in Braille, and they didn’t Tell us. He sat in class one day while the rest of the students were taking a quiz and he didn’t have ACCESS to the quiz in Braille. The inexperienced professor told Billy that she had reached out to Disability Services to ask “What” and “How” to get him ACCESS to the material and no one had responded.
By this point, Billy was overwhelmed and finally reached out to Mom for help. I communicated with the Director of Disability Services via email, telephone and face-to-face. I found out that all of the information submitted to be brailled a month ago had not been brailled yet, including the syllabuses for his classes. All of his professors were willing to make accommodations for Billy, but didn’t know “How” to do it. The Director of Disability Services had to reach out to them individually and explain the process of getting Billy ACCESS to his course materials.
The technology battle is still ongoing. Billy met with the AT Specialist at the University several times, but the AT Specialist did not know how to use this specialized equipment and Billy had a hard time understanding his accent. We had to request training through Division of Services for the Blind (DSB) and we are still waiting on a response. In the meantime, we paid for an AT Specialist who knows Billy’s specialized equipment to travel to Charlotte and train Billy on how to use some new technology. I regret that I did not include more detailed technology goals within his IEP starting in middle school.
The Orientation and Mobility (O&M) battle was by far the worst transition experience we both encountered. I sent Billy’s class schedule to DSB in early July. He was referred for O&M services in late July. He did not start receiving services until late August. She worked with him only 3 hours per day for about 3 days and she was not available during Billy’s first week of school. I had to pay for him to have a one-on-one personal assistant to help him get around the campus during that first week. The O&M Specialist was also not trained to teach someone who was born Blind and needed sensory orientation as well as mobility directions. Once again I had to pay for someone to come from out of town to train Billy on how to use the GPS Trekker.
Along the way I began to question whether or not college was for Billy? Now I know that, regardless of the obstacles we face, with or without a disability, it is okay to REST but you should never QUIT! Therefore, when I wake up in the morning, I will continue to ASK and FOLLOW UP until I find someone who can TELL us not only “What” to do but “How” to do it!
Children with disabilities may get into trouble every now and again, just like other children. When it comes to the discipline of students who have disabilities, public schools have a special obligation to consider the possible role of the child’s disability. There are federal and state laws that provide guidance in this area.
Section 504 of the Rehabilitation Act of 1973 prohibits any program that receives any federal funds from discriminating against an “otherwise qualified” individual based on their disability, when it comes to accessing, participating in, or benefiting from that program. If a student is punished for a behavior that is caused by his disability, that could be considered discrimination. In order to be sure that such discrimination does not happen, schools should take a look at any possible connection between the behavior in question and the student’s disability when making decisions about discipline. Many school systems use a process that is similar to Manifestation Determination Review (MDR) that is described in the Individuals with Disabilities Education Improvement Act of 2004 (IDEA ’04). Each school system must develop its own Section 504 policy so you would need to check with your local school system to learn the details about how the discipline of students with disabilities is handled.
IDEA ’04 and state special education laws, allow school officials to consider the discipline of students who receive special education services on a case-by-case basis. This allows them to consider things like the nature of the child’s disability, the functioning level of the child, the intent of the behavior and other relevant factors. This flexibility is there to help make sure that schools respond to violations of the code of student conduct in an appropriate way, especially when a change in placement is being considered.
If a decision is made to change the placement of a child with a disability (as defined by IDEA), the school must hold an MDR meeting to determine whether the behavior in question was caused by, or had a direct and substantial relationship to the child’s disability. The group, which includes the parent, a representative of the school district, and relevant members of the child’s IEP team, will also consider whether the behavior or violation was the direct result of a failure to properly implement the child’s IEP. If the answer to either of these questions is “yes”, then the behavior is determined to be a manifestation of the child’s disability and the child is returned to his or her previous placement and provided with appropriate positive behavior intervention and supports.
Sometimes the team that conducts the MDR looks too narrowly at the child’s disability. They may only consider the child’s category of eligibility for special education services. Instead, the team should review all relevant information in the child’s special education record, including the child’s IEP, along with teacher observations and any relevant information provided by the parents. As an example, a child’s category of eligibility could be specific learning disability, but consideration of the child’s “disability” should also include possible impacts of ADHD and anxiety disorder diagnoses. The team should look at the whole child as they make a decision about whether the behavior was a manifestation of the child’s disability, just as they should consider the whole child when determining eligibility for special education, or when developing the IEP.
We often have to remind parents of children who receive special education services that it is the school district as a whole that is responsible for providing a free appropriate public education (FAPE) for their child. They are not limited to the resources within their child’s specific school building. This would seem like a no-brainer, but it is surprising how often that detail is missed when an IEP team or other school staff are trying to address the needs of a student who has a disability.
School staff will sometimes only think about the personnel that is currently assigned to that school when they are considering instructional strategies, adult-to-child support, equipment and assistive technology, behavioral interventions and supports, etc. Sometimes good ideas are dismissed because “we don’t have the resources for that.” Lack of resources is not a legitimate reason to fail to meet a child’s educational needs, but it is also a reality that resources are not unlimited.
One of the qualifications to serve as the LEA Representative on an IEP team, is for that individual to have knowledge of the resources of the entire school district or Local Education Agency (LEA). The LEA Representaive should be able to tell the team about LEA staff with special expertise who can be brought in as consultants who can provide ideas, training or help create a plan of action. Behavior Specialists and Psychologists can lead the functional behavior assessment (FBA) process and help develop positive behavior support plans. Reading specialist can help identify which reading program might be a better fit for a particular student. Specialists can also help staff better understand a particular disability, how it may impact the child in question, and offer research-based interventions and strategies that have been proven to be effective. Many school systems have staff who can conduct assistive technology assessments and help identify devices or equipment that might be appropriate for a specific child. Other specialist have much to contribute as well. Somebody just needs to invite them in!
There may also be specialized programs offered within a school system that not everyone knows about. In a worst-case example of that, there was child who received only very limited home bound services for months due to his behavior. The school had told the parent that they had tried “everything” before removing the child from the school. After the parent sought help from the Parent Training and Information Center, an IEP meeting was held with several Exceptional Children’s Department central office staff members present. It turned out that the school district had three different alternative education programs that could have provided this child with a full-time education in a less restrictive setting. These programs were not considered because the people in the school building were not aware of them.
Many state education agencies also offer consultants who can be called on for help, often at no cost to the school district. There may be centralized funds that can be used to meet a student’s disability-related needs. There may also be clinicians and programs available within the local community that can help either during or outside of school hours.
The bottom line is that school teams should keep looking and asking questions until they find something that will work for the child. When they have tried everything in the school building tool box without success, they should go out and get more tools. Giving up or settling for anything less than true FAPE is not an option.
Individuals with disabilities that affect their access to print have some free options for obtaining audio and braille books, magazines and pod casts. The local public library is bound to have a collection of popular audio books that can borrowed at no cost, as long as you have a library card and return the books on time. In many libraries, books can be reserved in advance and/or brought in from another branch so you are not limited to what happens to be on the shelves of that branch on a particular day. Public libraries often raise money by selling donated books and used ones that they have replaced. It’s a low-cost way to build your home library.
The North Carolina Library for the Blind and Physically Handicapped has a history that goes back to 1958. With Federal, State and private funding, it eventually became part of a regional network of libraries operated by the the Library of Congress. Even though the name of the library has not kept up with current preferred disability language, the library itself has continued to change with the times and now offers materials in a wide variety of accessible formats fr people of all ages. Individuals must complete an application and provide documentation of a disability that qualifies them to use the library. Please visit the website to learn more http://statelibrary.ncdcr.gov/lbph . If you don’t live in North Carolina, ask for the branch that serves your area.
Bookshare is another great resource for people who have print disabilities. Bookshare is free for qualified U.S. students and schools, thanks to funding from the Office of Special Education Programs (OSEP) of the U.S. Department of Education. Organizations and non-students can apply for paid memberships that will give them access to accessible materials through Bookshare. Check out Bookshare at https://www.bookshare.org to see if you or someone that you know can benefit from what it offers.
Whether you are reading for school, work or pleasure, it’s good to know that there are some free services available to make sure that people with print disabilities have access to the information, ideas and wonderful imagining that is contained in printed text. Read on!
For many students who have disabilities, the accommodations that are provided through their Individualized Educational Program (IEP) or Section 504 Accommodation Plan are extremely important to their school success. The accommodations are the things that are being done in a different way because of the impacts of the child’s disability. Accommodations could involve changes in the physical environment, school assignments, how the student participates in school activities, instructional materials, how much time a student is given to complete a test or assignment, additional supports, etc. The range of possible accommodations is mind-blowing, but they are selected based on the unique needs of each individual student.
Children should be told about their accommodations as soon as they are old enough to understand what they are and why they were chosen for them. Many parents are not comfortable talking to their child about his or her disability. They worry that it might negatively impact the child’s self-esteem. This concern suggests that the child is unaware that they have a disability. Even if the child does not know the name of a “condition” that they may have been diagnosed with, most kids are very aware of the things that they have trouble with. They know that it’s harder for them to write neatly, read, do math, remember things, see the board, walk fast, speak clearly, and so on. If they do have a diagnosis, learning that there’s a reason for why they struggle with certain things can come as a big relief. Even if there is no diagnosis or other explanation for why, it is generally helpful to have others at least acknowledge that things are difficult, and that it’s not their fault.
Talk to your child about how each accommodation is expected to help and how it should be implemented. Explain that sometimes a teacher or other school staff member might not be aware of the accommodations. Talk to him about how to handle situations where an accommodation is not provided. Discuss or role play what your child can do or say to let the adult know that he is supposed to have extra time, be moved into a separate room for a test, etc. Let your child know that it is also important for him to tell you when accommodations are not followed. You want to be able to address any problems as soon as possible.
Speaking with your child about her accommodations also gives her a chance to tell you about what is, and is not, working for her. It could be time to take another look at different ways that your child’s needs can be met, and maybe see if another accommodation would be more appropriate at this point. IEPs and 504 Plans are fluid documents and student input can sometimes make the difference between whether you have a document that looks good on paper, or one that actually works for your child.
Having these conversations, and preparing your child to handle “what if…” situations, can help your child learn how to effectively advocate for himself. That is an important life skill that he needs to start learning as early as possible.
For students in middle and high school it is extremely important for parents to keep up with the courses that they are taking. The classes should offer the right amount of challenge (not too easy, not too hard). They should be preparing your child for whatever their goals are for life after high school. More importantly, the courses need to be chosen so that they meet the graduation requirements for your school system. With many schools using computer programs to create schedules for students, it’s not hard for the needs of individual students to be overlooked.
For many students who have disabilities, course selection is even more critical. For some students it will be important to make sure that they are placed in the course sections that are co-taught by both regular education and special education teachers. This can offer real-time assistance and support to help students be successful with grade-level material. The co-taught classes can be selected in the areas most likely impacted by the student’s disability. Sometimes the assumption is made that, because the student has an IEP, they should automatically be placed in the lowest level course available. This approach would keep many students from building on their strengths to reach their full potential. Students who need support in some subjects can also take typical or even honors classes in subjects that are areas of strength for them.
These days, most high schools are using block schedules that cover the entire content of a course during a single semester. It may be important to make sure that the courses that will be most challenging for your child are not all piled into the same semester. With thoughtful planning, the school can create a schedule that spreads the work load out more evenly. For example, your child can take two really hard classes at the same time plus a support class and an elective in an area of interest. This kind of planning from the very beginning will usually allow students to complete all of their graduation requirements within 4 years so they can graduate with their peers. Even if they have to pick up a summer class or return for an extra semester, the goal is that the student experiences success and gains knowledge that will help them throughout their life. The extra time will be well spent.
Parents also need to look out for other kinds of scheduling problems:
- Make sure that courses are taken in the right sequence. The level1 course should come before the level 2 course.
- Make sure that your child is not assigned to a course that they have already successfully completed. With rare exceptions, they will not earn course credit the second time around.
- Make sure that your child was not placed in an elective course that they have no interest in, or one that is a poor fit, just because there was space in that class. Forcing an extremely shy kid to take a drama class will probably not end well.
- Make sure that your child is on track to graduate when expected. Your child could be taking math and science classes that are counted as “electives” that do not meet the graduation requirements for that subject area. If your child comes up short by missing even a single graduation requirement, they will not get a diploma. At least once a year have your child’s guidance counselor review the courses that your child has taken and compare them to the courses required for graduation.
Read your child’s class schedule carefully as soon as you get it. If you see anything on that doesn’t look right, contact staff at the school immediately. Go to the school in person if you need to. The sooner any problems are corrected, the easier it will be for your child, and the better their educational experience will be.
In most states physical education is part of the standard school-age curriculum. In North Carolina, all students in kindergarten through 8th grade have physical education at least once per week, with daily opportunity for other outside activity. Students who have disabilities are also expected to participate in some form of physical education.
Some students have disabilities that require some accommodations in order for them to successfully participate in a typical physical education (PE) class. Other students require specially designed physical education, based on the unique needs associated with their disability. If the student has an Individualized Education Program (IEP) the goals for special physical education (sometimes called “Adapted PE”) will be determined by the IEP team, just like goals for other academic or functional skills. Needed accommodations for physical education will also be documented on the IEP or Section 504 Accommodation Plan.
While this seems pretty straight-forward, there are a couple of specific situations that were unclear enough that guidance was sought from the U.S. Department of Education. In both cases, the children involved were at an age or grade where physical education was not an automatic part of the regular education program for students without disabilities.
Most high school students are only required to take one physical education class in order to meet graduation requirements. The high school may offer additional PE classes as electives, but those classes are not required. In most public preschool programs the children will usually have the opportunity for play and outdoor activity, but it is not part of a structured physical education program.
Does this mean that school systems do not have to provide physical education services for students who have disabilities in preschool, or after the PE graduation requirement has been met? As with most things having to do with students who have disabilities, the short answer to that question is, “it depends.”
The U.S. Department of Education issued two letters in 2013 which clearly made the point that, if a student with a disability has an IEP that calls for specially designed physical education as a way to meet their unique needs, the school system must provide that service, either directly or through another public or private program. The letters further clarify that, in this situation, the right to a free appropriate public education, in conformity with the IEP, would include special physical education regardless of the location where most of the student’s services are delivered. Even students who participate in a community-based transition program would be entitled to special physical education services if it is listed on their IEP.
Ultimately, the decision about whether a student with a disability requires specially-designed physical education rests with the IEP team. The IEP team is also responsible for determining the accommodations that will allow a student with a disability to participate successfully in a PE elective course, whether that course is taken out of interest or as a way to maintain an adequate degree of fitness. The school district’s responsibility is to implement the IEP. It’s really not that complicated after all.
Part of the excitement of going back to school is thinking about the fun parts of the school experience. Many children look forward to playing with friends during recess, having lively conversations at lunchtime or on the school bus, and field trips that bring history, art and science up close and personal. Many schools also offer extra-curricular activities that range from sports, music, and drama to special interest or service clubs. It is through these activities that many students form lasting friendships, discover gifts and talents, or gain experiences that help prepare them for future careers.
Students that have disabilities should be encouraged to consider becoming actively involved in all parts of school life. By law (Section 504 of the Rehabilitation Act of 1973), they should be given an equal opportunity to participate, but sometimes that message is not clearly communicated to the students, or to the adults that make the extra-curricular activities possible. In some schools, notices about club sign-ups, team tryouts or driver’s education courses are not even distributed in the special education classrooms. It’s hard to make a choice when you don’t know what the options are.
School staff may need to be more intentional in their effort to publicize these opportunities throughout the entire student population. Parents can also ask about what’s going on at their child’s school and the process for becoming involved if their child has an interest in a particular activity.
Some students with disabilities may need accommodations, assistive technology or other supports to successfully participate in their chosen extra-curricular activity. They may also need accommodations for some of the non-academic parts of the regular school day. IEP teams and 504 committees sometimes overlook these times when they are discussing the child’s educational needs. In some cases, this amounts to a missed opportunity to enhance the child’s school experience by supporting them through their disability-related challenges, or continue to work on IEP goals in a non-classroom setting. For other children, such an oversight can set them up for avoidable social or behavioral difficulties.
The good news is that IEPs and Section 504 accommodation plans are living documents that can be revised whenever the need to do so arises. Teachers, coaches and other adults also have the freedom to make many accommodations on their own when they identify a need for them. It almost goes without saying that a child may need different types of support for different activities.
The I’m Tyler video http://imtyler.org/index.php/video/ does a powerful job of making the point that students with disabilities are capable of participating in a wide range of activities when the adults around them focus more on what they can do than on what they can’t do. A little effort, imagination and open-mindedness goes a very long way toward giving students with disabilities the chance that they deserve to experience each day as full members of their school and larger communities.