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!
This comprehensive guide provides a wealth of information about the accessibility of a wide variety of travel destinations, parks, museums and other attractions throughout the state of North Carolina. It is funded by the North Carolina Department of Health and Human Services, Division of Vocational Rehabilitation Services and actually produced by inmates in NC Department of Correction facilities. Chalk up one for rehabilitation!
ACCESS North Carolina is divided into five regions of the state and there is also a special section with additional related resources. Using a mix of text and icons, each listing includes general information about each tourist site and specific information about:
- Types of paths
- Water fountains and elevators (if available)
Each listing rates (and describes) how accessible the tourist site is for people with physical/mobility challenges. Where applicable the listing also includes rates how accessible the site is for visitors who are Deaf or hard of hearing, visitors with vision loss, visitors with intellectual disabilities and visitors with other types of disabilities. Other information that may be important to planning a visit (e.g. dates of operation, cost, etc.) is also included.
Access North Carolina is available at all North Carolina Welcome Centers and on line at:
A text-only version is also available at www.ncdhhs.gov/dvrs/pdf/ACCESS-NC.txt.
Free copies can also be obtained from the NC Division of Tourism, Film and Sports Development at 1-800-VISIT NC or by calling the NC Division of Vocational Rehabilitation Services at 1-800-689-9090 or 919-733-5924 (TDD: Telecommunicative Device for the Deaf).
North Carolina is a beautiful state and there is so much to do and experience from mountain to coast! Take advantage of the summer break from school. Get a copy of the guide and go out there and access more of North Carolina. The next time that your child complains, “I’m bored!” your response can be, “Let’s go!”