When a parent has a child with a disability, they must plan their transition to adult life. This is Part 2 of why creating a vision for their child’s life and transition planning should start on the day of diagnosis.
Parents should write a life vision for their child that will direct all future decisions. Also, parents should ensure their child’s name is on all of the Medicaid Waiver lists as soon as possible. Information on the Waivers can be found under Transition to Adulthood Funding and Services on this website.
Perhaps the hardest part of planning for your child’s future is thinking about the hard stuff. If you envision your child living with you for the rest of their life, realize that the parents usually die first. Therefore, you need to prepare a life for your child without you. There are some links to information on this website to assist you on Wills and Trusts, Legal Help, and Legal Options for Age 18 and Beyond.
Employment skills are also important, and they can be taught at home every day. Even at an early age, parents can teach their child to complete chores. Following a schedule and waking up to an alarm are important skills that they will need later. Any task or training that adds to your child’s independence and work ethic is helpful for the future.
If you envision your child living in a certain housing situation (group home, state school, etc.), then be sure to visit several of those types of homes. See the reality with your own eyes before you include it in your child’s vision. It’s up to you to ensure it’s a good, safe, enjoyable environment.
Research, research, research! View movies that show what is possible for adults with disabilities. Read books and articles. Participate in support groups and online groups dedicated to discussing the future and what is possible.
Ask your child what they want. Whether they can respond verbally or not, chances are you know what is important to them. The transition plan should keep your child safe and healthy and include things your child loves. Your adult child will need a reason to get up in the morning. It’s the things they love that will be that motivation.
Thinking about the future can be difficult and painful, but the result of not planning would be infinitely worse for your child. It is important for parents to begin planning the future today. The transition vision and planning needs to start the day the doctor hands you your child’s diagnosis. Without planning and preparation, the happiness of your child’s future is not at all guaranteed.
While it is hard to face the reality of your child living longer than you, it is critical that you have a plan for when that happens.
You can learn more about transition on this website on Transition to Adulthood section.
I got to sit on a panel discussion for disability-related issues. In addition to another parent, there were three adults with a variety of disabilities who shared their experience on everything from doctors to their time in college.