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!
On average, about 20% of the students in our public schools have some sort of chronic health condition. Some of these students have Individualized Education Programs (IEPs) because they require specially designed instruction, but many of them do not. Because students have a wide variety of special needs, sometimes a combination of multiple issues, there are also several different options for meeting their educational and health-related needs. The following list will reflect the range of possibilities going from the most common and least restrictive, to the less common and more extreme. A professional school nurse and the child’s personal healthcare providers will play important roles in each of these situations.
- There are many students who do not require any action on the part of school staff other than to monitor and document the administration of medications that are taken at school. In order for this to happen, parents must provide the school with written documentation of medical need from a physician, physician assistant or nurse practitioner (hereafter referred to as “doctors”). They must also give their written permission for school staff to administer the medication.
- Emergency Care Plans are developed for students who have a health condition that can potentially lead to a medical crisis. In the case of some students who are at risk of a life-threatening allergic reaction, there should be an on-going effort to reduce the child’s exposure to the allergen involved, but also a plan that includes actions that staff should take immediately if there is a serious reaction to accidental exposure. The plan may include things like administering Benadryl, giving an Epi-pen injection, calling 911 and/or notifying the child’s parents. Some students have a seizure disorder that requires the immediate administration of specific medication in order to prevent major escalation of symptoms and possible long-term complications.
- Individual Health Plans (IHPs) describe how a student’s special health care needs will be met while they are at school. The plans are written by the school nurse, other school staff and the child’s parents, using information provided by the child’s doctor(s). The IHP will identify the child’s health condition(s), describe how the child is impacted by it, clearly state the actions that should be taken by school staff to manage or treat the condition, and how to respond if the child shows specific signs of distress or unusual developments occur. IHPs are also written for students who self-monitor their health condition and self-administer medication.
- Section 504 Accommodation Plan. Some students have health conditions that require some adjustment in the way things are normally done in order for that student to have an equal opportunity to access, participate in, or benefit from the public education program. For example, a child with asthma may be allowed to take breaks during intense physical activity like PE class, or a child who has difficulty regulating body temperature may need a climate-controlled school bus. Some children may need shortened school days because of low stamina, and others may need flexibility with the school system’s attendance policy due to frequent health-related absences. Each school system creates its own Section 504 Policy within federal guidelines. A child must be determined to be eligible under Section 504 before an accommodation plan will be developed to address that child’s specific needs.
- Individualized Education Programs (IEPs) are developed for children who have been found eligible for special education services because of disabilities that may or may not be related to a health condition. The IEP describes the services, supports and instructional goals required for the student to receive a free appropriate public education. The plan can include accommodations similar to those of a Section 504 Plan, but it may also include health or nursing services that are part of the student’s IHP. The IEP may include annual goals for the student to learn how to better participate in his own health care. The school nurse can also provide technical assistance and training to other school staff who will be working with the student.That service should be documented on the IEP. Sometimes, especially when the student’s health condition is totally unrelated to the disability that the special education focuses on, the IEP will simply mention implementation of the IHP to make sure that school staff are prompted to read the IHP and understand any responsibilities that they may have.
- Medical Homebound Instruction is sometimes required when a student is unable to attend school for medical reasons. Very specific documentation from a doctor is required, and there is usually an expectation that the student will have to be out of school for an extended period of time. If medical homebound services are approved by the school district, arrangements are made for a teacher to provide instruction in the child’s home or another setting outside of school. Because homebound services are considered to be extremely restrictive, the child’s situation is reviewed on a regular basis to see if the child is still unable to attend school.
Medical needs and special health conditions should never stand in the way of a child getting a free appropriate public education. What it takes will vary from one child to the next, but there is an option that is right for each child who wants to learn. When parents, schools and medical providers all work together anything is possible!
One of the most basic advocacy tips for parents is to make contact with your child’s teachers at the beginning of the school year, or anytime new teachers or service providers become involved. One purpose for this initial contact is to introduce yourself, exchange information about how each of you prefers to be contacted, and to establish a good working relationship long before there are problems to tackle. Another important purpose for this first contact is to share some vital information about your child, such as the fact that the child has a disability and an Individualized Education Program (IEP) or Section 504 Accommodation Plan. Sometimes classroom teachers are not made aware of these things right away.
Beyond the nuts and bolts of diagnoses, accommodations, modifications, special education services and such, it is important to make sure that the people who will be working with your child have a sense of who that child is as an individual, unique human being. Some parents simply write a letter, others have created brochures and PowerPoint presentations. ECAC has developed a couple of tools that make it easy for parents to share important information about their child with others.
Painting the Big Picture This is a worksheet that offers a way to quickly share information about things such as your child’s likes, dislikes, strengths, successes, challenges, as well as your dreams and visions for your child’s future. In each section there is also a place to share tips and successful strategies (what works) that help your child overcome difficulties and build relationships with others. There is even a place to capture Other Helpful Information that doesn’t fit anywhere else. This could include information about special healthcare needs, dietary restrictions, fears, unusual responses and things that can be done to calm your child when he/she becomes upset. Having a written document to refer back to will give teachers and others a big head start as they get to know your child!
ECAC’s Student Snapshot serves the same basic purpose as Painting the Big Picture, but it mainly focuses on the most important information that will make the biggest difference for your child. Areas of concern could include things like emotions, communication, sensory issues, medical conditions, academic needs, etc. In addition to teachers and other school staff, ECAC’s Student Snapshot can be shared with childcare providers, summer camp staff, Sunday School teachers, Scout leaders, etc. It provides a description of something that the adult may notice, an explanation of what that probably means, along a suggestion or two. Statements could go something like this:
When you see that I’m not raising my hand to answer questions, I’m probably not confident that my answer would be correct and I don’t want to embarrass myself. You can help by only calling on me when I do raise my hand.
If I ask to use the bathroom in the middle of an activity, it means that I cannot wait until the next break. You can help by letting me go immediately so that I do not have an accident.
If I’ve been having problems with asthma lately and I seem unusually hyperactive, it may be a reaction to the medicine that helps me breathe better. Please try to be patient and find ways to keep me occupied so that I don’t drive you crazy.
Teachers can also share these tools with parents so that they can get to know their students more quickly. It would also send a clear message to parents that you care about their child. Regardless of who reaches out first, sharing important information will help the people in a child’s life work together as a team. This will give the child a much better chance to have a successful experience.
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.
If you are the parent of teen-aged child who receives special education services, you have probably heard about something called Transition to Adulthood. Basically, schools are required to really think about what should happen in the last few years of school to prepare a student with a disability for their adult life. Regardless of whether they plan to go straight into the workforce, go to college or get other training, or continue to work on independent living skills for a while, there are steps that can be taken to make the transition out of high school a smoother one.
Many school systems offer Transition Fairs to provide an opportunity for students and parents to learn more about various options for adult services, post-secondary education and other community resources, all in one place. Sometimes the transition fairs will also include information sessions on topics that range from understanding Social Security benefits to job interview skills. Even if your child has a bit more time before she leaves school, it is always good to know what’s out there and learn what steps you should take, and when to take them.
Unfortunately, some school systems do a better job of getting the word out about transition fairs than others. Some will target certain groups of students and neglect to inform the parents of other students who have IEPs. Students with disabilities who spend most of their time in the general education setting often don’t get notices about a transition fair that may be going on in their community. Spring is the time of year when many of these transition fairs take place. If you haven’t heard about any in your area, ask your child’s special education teacher, case manager, guidance counselor, or the transition coordinator for your school system. Even if there are no plans to hold a transition fair this year, your questions may give them the idea to have one next year. It’s a win either way.
As the parent of a child with a disability, your first responsibility is to make sure your child gets the healthcare, support and education that meets his or her needs. Participating as an active and effective member of your child’s IEP team, and forming good working relationships with the staff at your child’s school are key ways to accomplish this. However, there are decisions that are made on lots of different levels that also can impact your child’s education and opportunity to be fully involved in their community. Think about how you might be able to influence some of those decisions in a positive way.
- School Improvement Teams and Parent/Teacher Organization- You can make sure that school building-level decisions take students with disabilities (SWD) into consideration. Decisions about equipment purchases, school activities and even procedures for communicating with parents can make a difference in whether SWD are looked at as an equal part of the school community or are overlooked altogether.
- School district Parent Advisory Boards- Parents have an opportunity to discuss issues, solve problems and do future planning with special education administrators at the same table.
- Local School Board- They set policies that apply to the whole school district and also approve budgets for how funds will be spent. Most school board meetings provide a time for public input, and Board members can be contacted individually as well. You can express an opinion, point out a problem, or even ask for their assistance.
- Task Forces- From time to time school systems or other governmental entities will create a task force to address a particular issue. These groups are usually made up of a variety of stakeholders. Most of the time there is an opportunity for parents or citizens to volunteer to participate on them.
- State legislators and the State Board of Education make critical decisions about funding, curriculum, staff qualifications, graduation requirements, public preschool programs, discipline rules, and so much more. Join an email list that will allow you to keep up with things that are being proposed, so that you have a chance to offer your input before the decision is a done deal.
- Get involved with local support and advocacy groups. There is power in numbers and this is also a way to share information about things that may be important to you or your child.
These are just a few examples of ways that you can make your voice heard and make sure that the people with the power to make decision think about how those decisions may impact people who have disabilities. So tune in, look around, ask questions and step up to make a difference in how the system works. Don’t watch things happen. Make things happen!
It’s report card time and time to see how the first half of the school year went. If your child’s report card reflects solid grades and good work habits, some sort of celebration is in order. One of my co-workers learned that her daughter earned a 96 in an advanced math class. She offered to buy ice cream, but her daughter wanted her bedroom painted instead. Fair enough!
If, on the other hand, you were disappointed in your child’s progress or performance, there is still time to turn things around. You and your child can press the reset button by looking for ways to improve on things that you have been doing. Think about changes that can be made on many possible levels.
- If your child has poor sleeping habits, try establishing a bed-time routine that gradually steps down the amount of activity and stimulation in the household. A well-rested brain functions better.
- If your child wastes time in the evening and then stays up late doing homework, set a firm cutoff time to stop working, shut down the computer and place everything in the backpack (which will “live” in a designated spot in another room). Then start winding things down toward bedtime. Provide prompts and reminders earlier in the evening to serve as fair warning. It may take a couple of incomplete assignments or disappointing test grades to get the real message across. Don’t cave in though, because it is essential that students develop good work habits, including learning how to effectively manage their time, if they are going to be able to sustain their success throughout the school and college years. Showing up for class exhausted and inattentive will eventually take its toll. Throwing together projects at the last minute and cramming for tests will also lead to poorer quality results that your child will take less pride in. I know this first-hand from my experience as person who went through school with undiagnosed ADHD.
- If your child is overwhelmed by an over-packed schedule that doesn’t leave enough time for schoolwork and “down time,” consider taking a break from one of the activities. Unless your child is talented enough that a sport or cheerleading scholarship is a real possibility, they might be better off burning the candle from only one end. Keep the activities that give them joy, and set aside those that are on the schedule just because of habit.
- If your child has an IEP or Section 504 accommodation plan, review it to see if it adequately addresses her current needs. It might be time to update the accommodations and supports to match performance expectations that tend to get higher each year. Get your child’s input so that any changes are going to be ones that they think will be helpful and will cooperate with.
- Re-establish lines of communication with teachers and other school staff. If your child will have different classes for the 2nd semester, there may be new teachers who may not be aware of his special needs or the fact that you are a concerned and involved parent who expects to be considered an equal part of your child’s educational team. Set a positive tone and let them know that you are looking for this semester to be better than the last one.
- Look for any other areas where a change for the better might be possible: diet and nutrition, general health and well-being, mental health, organization (personal and/or household), social skills, etc. Consult with trusted friends, family and professionals to see if they have any suggestions.
If things are going great, keep doing what you are doing. If not, try something different that might lead to better results. Remember, there can be no growth without change!
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!