The Future Starts Now: Discovering the Possibilities for Your Multiply Disabled Child
The Transition to Adulthood
Parents, in general, have mixed feelings when they think about their children growing up and becoming adults, but when their children have multiple disabilities, those feelings can frequently include very serious concerns about the future. There are formal processes for planning a student’s life after high school that are required in the law governing special education services that families need to know about and that they may find helpful. In particular, a transition team is supposed to start meeting toward the end of your child’s time in school to plan his journey, or transition, from high school into adulthood, and life beyond school-age services. This team includes you, your child, and the other members of the educational team, and the team meetings focus on what needs to occur during the last years of school. However, it is important to be thinking about the future well before that time and in a broader way.
Planning for the Future
It can be difficult to think about the future when there is so much to do to plan just for today, tomorrow, or the rest of the school year. That’s why it’s a good idea throughout your child’s life to ask his educational team to set aside time periodically to plan for the future. If your child is older than age three during the school year, team members are charged with collaborating on an educational plan based on an assessment of your child’s needs, called an Individualized Educational Program (IEP), which focuses on educational goals for the year. But in addition to these meetings, planning for your child’s future means developing a cohesive vision that goes beyond his school program to look at all aspects of his life. This kind of planning for the future is often referred to as person-centered planning, or futures planning. It involves:
- examining your child’s interests, strengths, needs, and learning style;
- identifying your child’s dreams and goals;
- considering who is in your child’s support network; and
- planning how these people can come together to support your child in reaching his goals in the near and distant future.
We have a futures planning checklist that you can use to prepare.
Where Will My Child Work?
In planning for the future, it is helpful to have ideas of employment options for young adults who are blind with additional disabilities. The transition from public school moves from one system providing services to multiple agencies that all do various parts of the overall plan. States vary in what types of programs they provide and often have waiting lists for their services. This complexity is one of the reasons it is important to start the planning process early. Supported employment is a popular option for many looking for an inclusive work environment.
Where Will My Child Live?
Just as you have several types of employment options, there are several options for finding a place for a young adult who is blind with additional disabilities to live. In many instances, the transition into a place to live away from the family home does not take place for many years. Employment and options for activities during the day are the first priority. In time, the concept of living away from the family home will become an important aspect of the transition planning.
There are a few options available to families who would like to start saving money for costs that will occur after the transition into adulthood. We have an article, “Planning for the Financial Future of a Child with Multiple Disabilities: Steps 1 Through 12,” that walks you through several of the options. Recently, the Able Act was passed, which provides new options that are similar to college savings plans.
Person-centered planning is usually undertaken with a team of people consisting of your family, other important people in your child’s life, and special educators involved with your child. These meetings should take place regularly—how often will depend on your child and your wishes—and should remain separate from other school-related meetings.
An effective person-centered planning meeting will usually involve the following:
- The meeting focuses on your child with visual and multiple disabilities. It is not an IEP meeting where various professionals share assessment results and plan the IEP. Typically, a future-planning meeting happens before the IEP meeting. Your child is very much involved in the meeting.
- The meeting looks at your child now, in the near future, and in the distant future (5-10 years from now). Spending time looking at your child’s and family’s wishes for the distant future will guide the team in identifying the people who can support your child in achieving his goals, the activities he enjoys doing that can be built on to reach his goals, and the other people and resources your team might ask to join you to support your child’s journey toward reaching his goals.
- Person-centered planning encompasses all aspects of your child’s life. This process is not about the school system and what services are or are not available at this point in time and doesn’t focus on what the school system can or cannot offer. Therefore, this planning supplements and is in addition to any transition planning taking place in school.
Person-centered planning meetings typically last from two to four hours. Often chart paper is used to draw or list information that pertains to your child’s future. There needs to be a facilitator for the meeting, perhaps a special educator you know, who guides the discussion by asking open-ended questions. The tone of the meeting is positive, and members are encouraged to share openly and to “think outside of the box” when it comes to envisioning your child doing the things he enjoys with the support and services he needs to be happy and successful.
A variety of processes have been developed to guide teams in person-centered planning, and you may hear them referred to as Making Action Plans (MAPS) or Choosing Outcomes and Accommodations for Children (COACH). To begin thinking about this kind of planning, it may be helpful to talk to other parents and national organizations for parents and for people with disabilities.
There are great resources available to you from a variety of public and private agencies or groups. The ARC, in particular, has information on their website about futures planning. ARC is an organization that can be a good resource at the community level for learning about particular programs.