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A Mom’s personal experience with her Deaf-Blind son’s Transition to College

By Debra Pickens 4756155697_a85f3fb6db_m.jpg

“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!

College experience is possible for students with intellectual disabilities!

photo of college studentsThere has been a quiet, but growing movement taking place in the world of post-secondary education.  Thanks to demand from students who have intellectual and developmental disabilities (I/DD) and their families, and the support of a federal initiative, there are an increasing number of post-secondary education programs that allow  individuals with I/DD to have a college experience.  Today many more young people are living their dream of going to college!

Think College! is the joint effort of several federally funded projects.  It is focused on promoting post-secondary education (PSE) as a choice for adults and transition-aged youth with intellectual disabilities across the nation. In 2009 Think College! conducted a survey of existing PSE programs and identified 149 programs located in 37 states.  Today there are at least 212 programs, with 9 located here in North Carolina!

The Think College! website has a wealth of information about PSE programs, evidence-based practices, research findings and related resources. Think College! also provides training and technical assistance for parents, self-advocates, educators, administrators, legislators and others who play key roles in developing and supporting additional high quality PSE programs. Learn more at: www.thinkcollege.net

The Carolina Institute for Developmental Disabilities (CIDD) coordinates the North Carolina Post-Secondary Education Alliance (PSEA), a diverse group of stakeholders who have a mission to expand the PSE options for individuals with I/DD in North Carolina. The PSEA webpage has information and links for those interested in creating new programs as well as information on the existing programs. There are currently programs at 5 community colleges: Alamance, Central Piedmont, Cleveland, Randolph, and Western Piedmont.  There are also programs housed at Appalachian State University, UNC-Chapel Hill, UNC-Greensboro, and Western Carolina University.

Visit the PSEA homepage at: www.cidd.unc.edu/psea  In addition to information about “the Alliance” and its activities, you will find links to comprehensive information about each North Carolina program. For an easy side-by-side comparison, there is also an “At-a-Glance” document that uses a grid format to provide some key information.  Thanks to the PSEA, information about post-secondary options for students with I/DD is now also available on the College Foundation of North Carolina website:  www.cfnc.org, a central information source for all students who are thinking about college.  Now we are playing on the big stage!

If you have, or know of, a young person with I/DD who may be interested in going to college after they leave school, be sure to discuss this with their teacher and IEP team. The student’s transition component, and other parts of the IEP, can be developed to help prepare the student for a successful PSE experience. Focus on the hard and soft skills that will be needed on campus, in the workplace and community, and for independent living. Many of these programs also work with adults who have already been out of school for a while, but some have a special focus on those who are in the process of making the transition to adulthood. Contact any program that you have interest in to get more information, sooner rather than later. That’s how you begin to turn a dream into a goal, and then into reality!