Future Reflections Fall 2014 TRANSITIONS
The Transition Conversation:
The Journey to Adulthood of Blind Youth with Additional Disabilities
by Lydia Schuck
From the Editor: Lydia Schuck conducts research for a federally funded project that helps school districts support transition programs for youth with disabilities. She is the mother of a twenty-one-year-old blind daughter, a past president of the Michigan Parents of Blind Children, and an active member of the Lansing Chapter of the National Federation of the Blind. This is the third of five articles she plans to write about the transition from school to community for blind and visually impaired young people. Her previous articles appeared in Future Reflections, Volume 32, Number 3; and Future Reflections, Volume 33, Number 1.
In the past, the philosophy of the National Federation of the Blind (NFB) has been explained in this way: "Given the right training and opportunities, the average blind person can do the same things the average sighted person can do." However, people vary in countless ways, whether they are sighted or blind. As a parent, you may know that your blind child with additional disabilities faces many challenges that are far from average.
Much of the blindness and visual impairment that occurs in children is due to extreme prematurity or to an assortment of complex genetic syndromes. It is estimated that more than half of all blind and visually impaired children have one or more additional disabilities. The range of additional disabilities includes hearing impairments, seizure disorders, cerebral palsy, autism, and cognitive delays. Virtually any disability or medical condition that can be found elsewhere in the population can appear along with blindness. Blind children with significant developmental disabilities may not grow up to be lawyers or entrepreneurs, and they might never hold leadership positions in the NFB. Yet they and their families still can benefit from NFB and NOPBC involvement.
The NFB has adopted a new brand statement: "The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can live the life you want; blindness is not what holds you back." The new brand statement fits the realities of families that include blind children and adults who have additional disabilities. Through training and opportunities, the not-so-average blind person can achieve the same goals as the not-so-average sighted person. The new brand statement reflects the former slogan, but now it embraces a much wider range of people.
During your child's journey to and through adult life, blindness does not have to be the storm that sinks the ship. Your child can live the life he wants.
Youth with Multiple Disabilities in Transition to Adulthood
Although transition needs and experiences vary from one person to another, the legal requirements are the same for all students. The Individuals with Disabilities Education Act (IDEA) requires that transition plans consider individual strengths, needs, preferences, and interests. Some young people will be better able than others to talk about their individual strengths and wishes. In some cases, the youth may not be able to speak at all, yet parents, teachers, and other important people in his or her life can provide the information.
When you think about the future, you look ahead to your child's adulthood, even though he may never reach full maturity or be able to exercise self-determination. You probably will ask the same questions other parents ask themselves. What might my child be able to achieve? How does she want to use her unique abilities? How can she have the most satisfying life possible?
Some individuals may never reach adult skill levels in crucial areas. Nevertheless, parents, teachers, blindness professionals, and young adults themselves will all agree that it is important for them to learn and do as much as they can. Independence means something different for each person, yet it is vital for everyone.
Transition Planning for Youth with Severe or Multiple Disabilities
For any young person in transition to adulthood, IDEA requires assessment of the youth's current strengths, needs, preferences, and interests in employment, education, and training, and, if appropriate, independent living. Post-high school goals are listed in the Individualized Education Plan (IEP) in each of these areas. The student's IEP should contain annual school goals that are linked to the goals post-high school. Finally, transition services and activities are added to the IEP to enable youth to reach their post-high school goals. These services are provided until a student reaches a certain age. In most states transition services continue until the student reaches his twenty-second birthday or until he receives a diploma, whichever comes first. A notable exception is the state of Michigan, where school districts provide services through age twenty-six.
Even when a student with additional disabilities has earned an academic diploma, some parents and school districts hold back graduation. In this way the student who does not yet have good independent living skills or who needs job training can remain eligible for programs sponsored by the school district. Some students have syndromes that slow their maturation, so the extra years are a buffer between high school academics and independent adult life. For students who will never earn an academic diploma, these years are used to develop skills until the student ages out of the program. What happens next for those students would be a good subject for discussion within state Parents of Blind Children (POBC) groups.
It may seem hard to believe, but transition assessments have been created for individuals of every skill level, including those who have limited abilities to speak. The Personal Preference Indicators and Child Personal Preference Indicators are two assessment tools that are intended to be completed by parents and by other adults in the young person's life. However, transition assessment does not even have to include a special form or specific process. Even an informal conversation with your child is a kind of assessment, a way to determine where her strengths, needs, preferences, and interests are right now. Make a few notes about your child's expressed interests, put a date on the paper, and take it to the next IEP meeting. It is an informal assessment that could be very helpful in the planning process.
Job Carving
An interesting and useful term in the rehabilitation context is the notion of "job carving." A specifically designed job may be carved out if a student's assessment identifies a particular strength, or if you know about something your child enjoys as a hobby. For example, a young blind woman with additional disabilities enjoys vintage music. She might apply for a job at a vintage record store as a clerk. Through a negotiation with the owner of the business, her job may include dusting the records, stacking, and straightening, but not using the cash register or working at the counter. This is a carved job, because the usual clerk would do all of these tasks.
One of the strengths of the transition assessment process is that the youth can use her interests as a starting point for goal setting. Hobbies can generate interesting goals!
Employment and Education are Not Everything in Life
Take a look back at the new NFB brand statement. Blind individuals with and without additional disabilities can live the lives they want. Disabilities other than blindness may present formidable barriers, but blindness alone should not hold a person back. Good training in alternative techniques and access technology make a world of difference, but a person's quality of life is not the sum of his individual abilities. Quality of life is enhanced when a person lives the life he wants to live. For some youth, achieving a semi-independent life in the local community is the primary post-school goal. This goal requires the school to develop annual educational goals and transition services and activities for the student's IEP. Every goal is worth planning and striving for.
Families of children with additional disabilities are deeply aware of how valuable each person is, regardless of work, education, or even the ability to perform simple self-care tasks. Nonetheless, these families sometimes find themselves severely stressed by the challenges they face every day. Friends must always acknowledge that caring for a child with severe disabilities is not easy, even if the parent has become highly skilled. Such families need support, friendship, and acceptance from other families.
The Role of Your State's Parents of Blind Children Organization and the National Federation of the Blind
The National Organization of Parents of Blind Children (NOPBC) is a membership organization with many state and local chapters. Positive attitudes about blindness, particularly reflecting the NFB's brand statement, are an essential element of POBC activities. One of the first things to know about POBC groups is that they are not primarily support groups. POBC acknowledges that parents may grieve after a diagnosis of blindness. POBC provides a place to talk freely about family and individual challenges as needed. However, the main reason to meet and work together is to move forward the opportunities for blind people in our society, particularly for our kids and their futures. This focus on positive action keeps parents from getting stuck in hopeless worry.
Community and school activities for typical children and youth may need to be adapted in order for a blind child to be included fully. In the same way, activities for families of blind children must include adaptations for children with multiple disabilities, if those families are to be included. As the parent of a blind child with additional disabilities, you may have to explain your child's needs and suggest ways for her to participate in an activity that is being planned. If an activity just won't work for your child, you might want to come without her, just to talk with other parents. You will benefit from the time you spend with other families, and your POBC group will be stronger because you bring a unique perspective.
Making the Most of the State Affiliate and Local Chapters
We can say that blindness does not have to hold our kids back because of the advocacy of NFB members since the beginning of the organization. Not every parent can or wants to be involved in local or state NFB activities. However, parenting a child with multiple disabilities can be very isolating. Local chapter outreach may allow a parent to socialize with people who understand blindness and the world of disabilities. Any parent who wants to gain lifelong friends and help expand opportunities for blind people should join a local chapter. However, adult blind NFB members must avoid oversimplifying your child's needs and offering cookie-cutter solutions that you know will not work. Blind adults were blind children at one time, but they do not know your child like you know him. Mutual respect and listening well can go a long way here.
Take, for example, a blind young adult who has Asperger syndrome with extreme anxiety. He may not be able to attend activities with NFB acquaintances. However, NFB members can become friends and mentors by exchanging emails and talking on the phone. A warm relationship with a blind adult can fill a need for the blind youth and for the parent who is the child's primary social contact.
NFB’s Immediate Past President Marc Maurer once said of a state affiliate's relationships between members, "Try to love each other." This is good advice for all of our chapters and affiliates. Be as involved as you can with the NFB and POBC. The friendship and support of other parents and of blind adults will be helpful to you. In addition, your family's involvement will help other people understand the unique needs of blind individuals with additional disabilities. Go to meetings when you can, read the NFB magazines, and share information with other families. While you may not find other families quite like yours right away, those families are out there. They will be glad to know that you are there, too.
A Personal Note
I am the mother of a blind young adult who is active and verbal, but who has additional disabilities that make employment and ordinary relationships very difficult. For several years we were not able to attend POBC activities because our child did not want to attend and would not be able to have fun at the event. If our child had attended, I would have spent my time running tube feedings and preventing tantrums due to anxiety, not to mention monitoring and feeding our younger children. Still, I went to the local chapter meetings and state affiliate events whenever I could. As our kids became more independent, I have been happy to be more involved. We will probably always provide some level of support to our blind daughter, and she will probably continue to enjoy friendships with NFB members in our home state of Michigan.
References
Child Preference Indicator and Personal Preference Indicator are free resources from the University of Oklahoma Zarrow Center, <https://www.ou.edu/education/centers-and-partnerships/zarrow/transition-assessment--severe-disabilities/preference-indicators.html>. Other free resources, such as the ME! Scale, are also available from the Zarrow Center.
Job carving and job creation resources:
<http://www.communityinclusion.org/article.php?article_id=126>
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