Preparing Students Who Are DeafBlind for Adulthood

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You have spent years working to make sure that your child who is DeafBlind has had every chance to learn and succeed at home and school. Likewise, there were lots (AND LOTS!) of times when you helped educators understand the complexity and the specific work your child needed.

As your family navigated the educational system throughout those early school years, you could not help but think about your child’s future — leaving school and beyond. For young adults who have a disability, this move into adulthood is challenging; for students who are DeafBlind, the process is even more complicated.

Working with Professionals

Your child lacks the information obtained by using vision and hearing. You have been sharing this, and possibly information on additional disabilities, for many years with many people. The need for this information will continue. Providers from adult service agencies will join the educational team and need to learn about your child and Deafblindness.

Many providers are from agencies that primarily serve people who are deaf OR blind and don’t understand the complexities of having BOTH vision and hearing loss. In addition, a major change for you and your child is that these agencies have new entry rules and guidelines to access their services. Where your child was entitled to various services in the educational system, they will now have to show eligibility to access adult services.

Preparing for Adulthood

Before your child begins high school and you start hearing more about planning for the future, it’s important to start preparing — ideally in middle school. Early planning will help ensure a successful move into adult life.

So where has the time gone, and what lies ahead? During this planning, it is important for your family and your child’s team to both look back and plan ahead. In Looking Back, you can tell the story of your child’s growth and progress and gather information about strengths, needs, and interests that will shape their future goals. Planning Ahead with your child and their team to develop goals and steps to reach them will now be a major focus during the remaining high school years and beyond.

Looking Back: Person-Centered Planning — Take the Time!

Hopefully, you and your child have already been a part of a Person-Centered Planning (PCP) process. If not, as your support team comes together, an important first step is to consider starting this approach. It will be well worth the time to make it happen. (Someone from your state Deafblind project who is familiar with the PCP process and Deafblindness can help you and your child get started. The resource section has a link to help you find your state project.)

In Person-Centered Planning, it is important to understand that “the team” is not just your IEP Team. It should include friends, extended family, community members — anyone who knows your child and can assist in building a picture of their future — including new team members from adult service providers. The team’s focus is on the student and their needs and dreams for the future. The team creates maps describing your child’s background, vision, hearing information, communication skills and preferences, strengths, likes and dislikes, dreams, goals, and fears.

Acknowledging Your Child’s Individuality

The uniqueness of your child’s vision and hearing loss is essential information for the team and future planning. Remember how many team members you have seen in your child’s educational history? How often have you had to help everyone understand your child’s needs? The more team members know, the better. Participating in Person-Centered Planning will provide all team members critical information about your child and family and get everyone on the same page about what you and your child want for the future. For your child, the PCP process will be invaluable as the team develops appropriate goals for adulthood.

Often, Person-Centered Planning provides the team with all they need to know about a DeafBlind student’s interests, strengths, self-determination skills, and needs. However, other tools can assist the team in gathering this information and developing a plan of action. A good resource for this is the READY Tool: Readiness Evaluation of Transition to Adulthood for Deafblind Youth on the National Center for Deafblindness website (https://www.nationaldb.org/products/ready-tool/).

Planning Ahead: Focus of the IEP for Adulthood

As your child’s team gathers to plan and develop new goals across different areas and settings, you will learn about a special IEP focused on preparing for adulthood. This Transition IEP will focus on several areas: training and post-secondary education, employment, independent living, self-advocacy, community involvement, and health care. You, your child, and the team should include goals related to each of these areas, as needed, to reach your child’s future dreams. Successful outcomes for your child will rely on careful team planning, with special attention to your child’s hearing and vision needs.

Specific strategies to use in working toward accomplishing these goals may include:

  • Identify the student’s preferred way of communicating (speech, sign, symbols, using assistive technology) and ensure that communication methods are accessible and consistent across home, school, and community environments.
  • Ensure the student has the necessary support to travel independently through O&M training, tactile mapping, mobility aids such as white canes or guide dogs, and/or familiarization with public transportation.
  • Provide experiential learning opportunities where your child can learn and practice “soft skills” such as problem-solving, time management, and self-advocacy.
  • Facilitate work-based learning experiences to build practical skills.
  • Provide access to and training in state-of-the-art assistive technology to aid your child.
  • Empower your child to become a better self-advocate by teaching them to express their needs and preferences effectively.
  • Foster social skills and encourage participation in extracurricular activities to promote social integration and networking.
  • Provide opportunities, when possible, for DeafBlind peers to mentor your child and serve as positive role models.
  • Encourage participation in community activities and volunteer work to enhance social relationships and community access.

Planning Ahead: Independent Living — Success Stories

The following short success stories focus on the area of Independent Living. Reviewing these stories will give you more specific ideas for setting goals with your child. We all learn many skills in taking care of ourselves; the same is true for your child who is DeafBlind.

Independent Living is not necessarily about your child moving out of your home and living alone. Learning and practicing daily independent living skills, including self-care, clothing care, accessing community services, social skills, cooking, making choices, using transportation, and time management, are just a few skills your child can develop during these critical years and beyond.

Thomas

Thomas is 16 and was diagnosed with CHARGE syndrome at age three. He has severe hearing loss, functional vision in his right eye, and light perception only in the left eye.

Using the PCP process, it became clear that Thomas wanted to be more independent in caring for himself. For example, he thought he could get himself up every morning rather than his mom waking him. The team turned the task into a goal. Thomas tried different vibrating/light alarm clocks to see what worked best. He learned to set the alarm and was more independent in this daily task. Likewise, he began doing more household chores like laundry and cooking. These goals included developing a schedule for chores and learning the tasks for each chore. Over time, Thomas became more involved in decisions about his future. He likes cooking and plans to go through a culinary program at a two-year vocational school.

Sasha

Sasha is 17 and faces Usher syndrome, which causes both deafness and vision loss. Despite these challenges, she’s determined to use her limited vision to learn new skills. Her goal is to become a counselor by attending college, and her team is helping her make it happen. Sasha explored vocational services, special college programs for students with disabilities, and different technologies to help her learn. She also started planning how to get to her classes. Her school plan focused on college goals but also covered important life skills like speaking up for herself, managing schedules and money, and handling appointments. Sasha has become a strong champion for her own needs.

Joshua

Joshua is 18 years old and was diagnosed at an early age with Leber congenital amaurosis. He has low vision and associated disabilities, including hearing loss, movement disorders, heart defects, and seizures. Joshua is DeafBlind. He has a beautiful smile and enjoys riding in the car, being out in the community with other people, and different textures. Joshua uses a tactile system for making choices and communication. His team wanted to expand his opportunities in the community once he graduated from school. Joshua learned and used new picture cards to choose preferred activities at different community locations. He even helped develop a grocery list for preferred foods and would go to the store with his father to buy groceries. Joshua now lives in an apartment with another young man with disabilities.

In addition to these stories about independent living skills, the Resources and Tools section includes “success stories” of other young adults who are DeafBlind. Each of these stories provides more ideas for planning in key life areas. Reading about these journeys — and how these students have become successful adults who advocate for themselves — is refreshing and inspiring.

Looking Back – Planning Ahead: Wrapping It All Up

The road toward adulthood is challenging yet doable for students who are DeafBlind. It requires careful planning, individualized support, and a collaborative approach. With early preparation focused on your child’s specific strengths and needs, you can empower your young adult to overcome challenges, become more independent, pursue their goals, and lead a fulfilling life in their community. With the proper guidance and resources, this new journey can be a successful and rewarding one.

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