American Action Fund for Blind Children and Adults
Future Reflections Convention 2020 NOPBC WORKSHOPS
by Maurice Peret
Introduction by Carlton Walker: Maurice Peret is an orientation and mobility instructor with NOMC certification, and he is in charge of youth mentoring programs for the NFB. In this presentation he talks about the transition planning that officially begins for our blind and low vision children when they reach the age of fourteen.
I want to thank the board of directors of the NOPBC for inviting me to speak to you today. We often say that your children are our children, and it's really true. Your children are our future. It is really an honor to speak on the topic of transition.
Fourteen is a magical age or a miserable age, depending on how you look at it. Before we get to that magical age, I want to remind everyone that an ounce of prevention is worth a pound of cure. Preparation is vitally important! It's important to make sure blindness skills are in place as early as possible. If your child has a progressive eye condition, it's essential for them to learn blindness skills as soon as they can, even if right now they're getting along using the vision they still have. If they learn to use a cane, they're not going to forget how to use their vision! They need to learn Braille as early as they can. Again, learning Braille won't stop them from learning to read print. One more part of literacy for blind kids is keyboarding, or touch typing. Knowing how to type will allow them to use a computer at school and in the workplace.
By the time we get to that magical age of fourteen, a lot of things are happening for our kids. Puberty has kicked in. Friends are changing. Pretty soon peers will be learning to drive. Extracurricular activities change schedules so teens aren't always home when they used to be. They don't have time to eat dinner with the family anymore.
This is a time when kids are learning soft skills. They're learning to prepare meals, even if it just amounts to putting food in the microwave. They need to start learning to travel independently, without an adult, in age-appropriate ways.
At fourteen our kids are in eighth grade, or maybe they're freshmen in high school. The government designates ages fourteen to twenty-one as a period called transition. When our kids reach fourteen they become eligible for certain services. You will need to get your child enrolled with the Department of Rehabilitation Services in your state. In some states rehab services are handled by a commission for the blind. It's wise to start the process as soon as you can, because there can be a lot of paperwork involved.
Until now planning has usually focused on helping your child succeed in classes at school. Developing an IPE is all about long-term strategies. Your child should take an active role in their IPE meetings. They need to think beyond what will get them through a particular class and start to look ahead toward what they want in terms of education and possible career. Vocational rehabilitation (VR) will look at career goals and determine what steps must be taken to support your child's goal. If the student needs comprehensive rehabilitation training, now is the time to begin thinking about it. It might be college, or it might be training in skills that will lead to a professional license in a field such as electronics, auto mechanics, or massage.
A number of transition services are available through rehabilitation programs. These may include youth training programs that take place during the summer, where kids can learn some of the blindness skills I mentioned earlier. They can also work on those soft skills, such as cooking. They can work on travel—indoor and outdoor, in both familiar and unfamiliar places. They begin to socialize with other young people who are also blind or have low vision.
I cannot emphasize too strongly the value of this training. At this point in life, identity becomes extremely important. In order for our kids to hold high expectations for themselves and to believe that blindness won't stand between them and their dreams, they need to know peers who are going through some of the same things they are experiencing. They especially need to know blind adult role models who have gone down this path and can help them solve problems so they don't have to reinvent the wheel. In most cases our kids are the only blind students in their school, or even in their county. Blind adults play an extremely important role by modeling high expectations and showing them what's possible.
When I was growing up, the question in my mind always was: What jobs can I do as a blind person? Now I recognize that that's an unfortunate place to start from. You need to start by thinking about what you want to do. What are your dreams? The meeting with the VR counselor should focus on that goal. Don't let anyone talk your child out of that dream on the basis of blindness. You want to be a medical doctor? We know some blind doctors. You want to go into law enforcement? There are roles in law enforcement that a blind person certainly can play. The time soon may come when opportunities will open up in the military. With all of our digital operations, many tasks carried out in the armed forces do not require vision.
Apart from blindness, of course, your child has to look at the skills needed for the job. We need to recognize all of our children's skills and challenges.
Summer training programs for blind teens can focus on job readiness, career exploration, and even recreation and socialization. Programs might be built around skills such as technology, Braille, or travel.
Rehab services also can help your kids obtain tools and technology they need. Computer skills are critically important. Young people I work with often tell me, "I'm great with technology!" When I explore with them what they mean, I find out they're saying that they know how to use their phone. They know how to text. They don't know much about using email or word processing. We have to make kids get all of those computer skills.
If Braille is the student's primary reading medium, we have to find out which tools will work best in the long run. Often young people are introduced to Braille notetaking devices such as the BrailleNote Touch. However, they need computer skills to use in tandem with the Braille device. If students go off to college with a Braille device and have no computer skills, they won't know how to create documents in the format that professors expect. They will face quite a steep learning curve. We have to make sure that our children are learning to use equipment that will serve them beyond high school. They need to be able to integrate smoothly into a new environment. In college there are no IEPs. Our children need to have strong self-advocacy skills so they can ask for the accommodations they need.
I've spent most of my career as an orientation and mobility instructor, teaching cane travel skills. The NFB challenged the idea that blind people couldn't teach cane travel, which was the prevailing belief among a lot of professionals. The NFB said, "Hey, we've been teaching each other for decades." When I was growing up the term they used to describe me was "partially sighted." I thought that meant I was more sighted than blind, but I was quite mistaken. By the time I turned thirteen I found out that the little vision I had would gradually disappear. Changes in vision can be added to the changes our children are going through by the time they reach fourteen.
I'm curious to know what is on your minds. What are some of the questions you have?
KAREN: One of our frustrations has been accessing things that will help my daughter, who is thirteen right now. Because there is this gateway at fourteen, we keep hearing, "We can't help you until she's fourteen!" There are so many things that would help her in her education, but she can't access them yet. Why aren't we providing opportunities to our younger children so they can start gaining these skills earlier?
MAURICE: It's true; starting services at fourteen is a bit arbitrary. Part of the reason is that there's a bit of a tussle going on between the rehabilitation establishment and the education system. I don't want to let the education system off the hook around providing necessary skills and an equal education. We all know that the education system is often inadequate when it comes to serving our blind children. The schools are responsible for providing those necessary skills to our younger children, however we can make that happen.
The VR system is designed to complement education. It isn't meant to provide education per se, but to support the student's long-range goals. Our NFB training centers around the country host programs for children under fourteen every summer. We also connect with children through our BELL® Academies, where they learn basic Braille and mobility skills and are exposed to blind volunteers who serve as role models.
HAILEY: My son is fourteen, and I just learned that he should be looking into transition services. He's a little bit behind, and I want to know how I can help him try new things that might scare him. Sometimes it seems that state agencies try to force people in directions that they don't want or need to go. For instance, they'll pay for your child to go to their program, which we don't want, but they won't pay for an NFB program. How can we avoid this pitfall?
MAURICE: There is a provision in the VR law called the right to informed choice. If you can make the argument that an NFB summer program can provide something that is not offered by the VR agency's program, they have to honor your choice. It can be a bit of a struggle. Leaders in your affiliate can help by advocating for you.
As far as how to sell a program to your son, you can pitch it by telling him that the summer programs aren't all just scary hard work. There is socialization, the chance to get to know kids his age and to make friends. Some of his emotional delay may come from feeling alienated. In a summer program he won't be the only kid who doesn't present as what you'd expect of a fourteen-year-old.
MARISOL: I'm blind, and I'm interested in getting involved with parents and using my personal and professional experience to help them along the way. Does the NFB have advocates who help parents with the IEP process?
MAURICE: I can say unequivocally yes. Families can invite anyone they want to the IEP meeting. They can bring as many people as they want. You don't have to be a parent to be an advocate, that's for sure!
KIMBERLY: Hi, this is Kimberley Banks. I'm on the board of the NOPBC. If you want to get involved with advocacy, I strongly encourage you to get involved with your state affiliate. Usually the first contact a parent has, when they're dealing with an IEP issue, is with their state affiliate president. The affiliate president will put the parent in contact with an advocate. You also can reach out to us at the NOPBC. We have people who can join an IEP meeting over the phone or through Zoom. Reach out to us, and we can give you more information.
CHRIS: My son is now fourteen, and my daughter is twelve. I want to ask about shaving. Should I get my son an electric razor? How would you tackle that, from a man's point of view?
MAURICE: Now I have to put on my mentoring hat! The cool thing about shaving is that it's inherently a tactile activity. Whether you start out with an electric razor or disposable razors is a matter of personal preference. Your son will have to do a bit of experimentation, but you can show him the basics. Show him the way the blade should be facing and how to check that.
KAREN: You touched on self-advocacy and having your child attend the IPE meeting. I have noticed that when my daughter attends IEP meetings, the experience has exacerbated her depression and self-depreciation. She'll say, "Why am I blind? I hate being blind!" I try to put a positive spin on it—being blind isn't the worst thing in the world. How can you help your child with their emotional well-being while trying to teach them to self-advocate?
MAURICE: I'm so sorry she's struggling with those feelings! Actually those are pretty typical feelings for kids her age. We want to help her understand that going to an IEP meeting, something that makes her feel like an outsider, can really be empowering. You might pitch it as, "You might be an executive some day. This is good practice for going to a board meeting." All the people around the table are there to support her in reaching her goal, and in a way, she calls the shots. A lot of skills come into play, such as negotiating. Help her understand that there is a team to support her, and she is the center of the team. She's the CEO. When she goes to college that team will be gone, and she'll get to be who she gets to be.
Again, skills training is very important. I hear people say sometimes, "I don't want to use a cane! It makes me stand out like a sore thumb." I try to make them realize that once they master the skills of using the cane, they blend in. The cane becomes invisible. You get past feeling that using the cane is weird. Actually, not using a cane when you need one really looks weird! You need to master blindness skills so that they become background. It's a process that your daughter needs to understand. It's not quick and easy.
Maybe the IEP meeting can start by having your daughter lay out her goals. She can explain what she would like to see happen. Then she can have the last word at the meeting as well. No matter what happens in the middle, she can have the first word and the last word. Having an adult blind mentor at the meeting can also help.
KATHY: I'm a rehabilitation counselor with the state of Illinois. When it comes time for a student to have an IPE [individualized plan for employment], the student becomes the leader in addressing their transition goals. This gives the student ownership and responsibility with the IPE.
MAURICE: That's awesome. We need you in other states!
HAILEY: What are some things that parents and students can ask VR to provide that we might not think of right off the bat?
MAURICE: Technology is a big one. Find out what your child needs. Is it software? Is it equipment? What will provide your child with the same access to materials that their classmates have?
I also want to mention that the NFB has a career mentoring program in several states. Your daughter can sign up as a mentee and be connected with blind adults who can help her deal with some of the issues she's going through. She can apply at nfb.org/nfb.mentee.application. The program is in Maryland, Nebraska, and Mississippi, and we're hoping to expand into other states.
I'm on staff at the NFB, and I'd be happy to talk offline to any parents who have questions. I sincerely hope that the next time we get together, it will be in person! My email is [email protected].