reflections related to disability advocacy, family and (needed) cultural change
Tuesday, August 26, 2008
Interview with Kathy Z.: Transition
My friend Kathy Z. has a 21-year-old son with Asperger’s syndrome and she has dedicated much of the past several years navigating through the thorny process of transition. She has agreed to share some of what she has learned with my blog—perhaps other people will find information here that will help them on their own journey.
This information is great for people whose kids are near transition age, but it is also good information for people with small children--while the details will change before your child is this age, a 'big picture' view of your child will help inform the decisions you make everyday. This shouldn't overwhelm you, just give some direction to your thinking.
So, where do we begin?
A lot of the preparation for transition from high school to the world of adults with disabilities begins years before the actual transition occurs, somewhere between the ages of 18 and 21. Start by asking yourself: what happens when the school bus doesn’t stop anymore? We need to approach transition from two directions: work done in collaboration with the school, and work done by the family at home.
The work of fostering independence begins at home. Difficult as it may be, picture your kid as an adult, and try to envision where she will be living and what she’ll be doing as an adult. A lot of kids expect life to go on the way it has without any real expectation of what might come next or that there might be choices. It is really important to teach our kids “visioning,” that is, picturing themselves in different scenarios. In many respects, this is no different from the things we do for our “typical” children.
• Talk to your child about what they want to do when they grow up. • Ask your kid what type of place they want to live in. When you visit someone who lives in an apartment talk about what it would be like to live there—the same with other types of places. • Talk about what kind of home life they would want and who they would want to live with. • In your travels through the community, point out people at work and ask your child if they would like that kind of job, or something similar. • Pay a lot of attention to your child’s interests and strengths—individualize!!!!! Explore any career opportunities those interests may feed into. • Encourage your child to become part of the community and foster a sense of responsibility. Look for volunteer opportunities. • Remember that almost no one starts out with their ideal life: we all experience Plan A, Plan B, and “when all else fails”! Teach your child to work towards their goals on a step-by-step basis.
Ask your child what their goals are: in most instances you’ll find that they are no different than anyone else’s: a home, a family, and a “good job that pays reasonable money” as my son succinctly put it.
Many people who work with our kids limit their own vision to entry-level jobs where they expect our children to stay forever. Your child may have a progression of ideas or may want to change jobs at some point in their lives—you can teach your kids to look beyond and ahead. Our kids with disabilities often get few opportunities for dreaming and may have difficulty with the concept of time. They need practice.
Show them as many options as possible and get them in the habit of imagining changes. Their life will change anyway as they get older and their families get older—it’s inevitable. Like everyone else, they need the opportunity to THINK about it.
What other skills are important?
Foster independence as much as possible: teach them the life skills they will need to be as independent as they can when they become adults.
Among life skills to consider are:
• Self care and hygiene • Social skills • Relationship skills (for many types of relationships) • Self-advocacy • Problem solving • Organization and schedules • Budgeting/finances • Home maintenance
What else do we need to consider?
• When your child is a teenager you need to be sure that your child is qualified for services through your region’s Developmental Disabilities Services Organization (in NY, called the DDSO, handily enough)—this should happen while your child is still in school. Qualifying (at least in NY) gives you access to family training, service coordination (which gets you help with all aspects of your child’s life!) and Medicaid reimbursement. • Investigate agencies also, find out about their rules, restrictions and options and other possibilities and funding streams. You want to be sensitive to system-driven or consumer-driven philosophies and other possible agendas. For example, some people like a religious connection and some people do not. • You also want to look into SSI, guardianship or its alternatives, and trusts. • It is important to note that adults with disabilities are not entitled to services the way children are entitled to an education. Qualifying will probably REQUIRE negative documentation. So for this, you will put away all of the strength-based work you have done throughout your child’s life and use a deficit-based, needs-oriented approach. This is hard to stomach, but like any label, it is just a doorway to services.
Any other advice?
Transportation is the most important part of any plan! You can have the best job and interests in the world, but if your child can’t get from point A to point B it could all fall through. OK, We have talked about what we need to do at home, what should we be collaborating with the school on?
The work done at home is more extensive and more difficult, but in the long run, the skills you teach and the services you put in place are well worth the effort.
Most people are familiar with the IEP process, and in many respects, this is the easier of the two approaches as you have the might of law and entitlement on your child’s side, and therefore support from school personnel. You begin early assuring that your kids’ education meets their needs and, thanks to IDEA, schools are required to begin planning for transition at age 14. Some things to consider:
• Don’t just think of this year’s goals, always include long-term goals. • Put things that you think might be helpful in your child’s IEP. • Investigate and consider alternative programming and schools. One size does NOT fit all. • Enlist the help of school personnel to brainstorm vocational opportunities. As your child comes closer to graduation, ask for a vocational assessment and request work/study opportunities. • It is also important to remember that your child does not have to graduate in 4 years so you have time for vocational work, etc. By law, schools are responsible for your child’s education until graduation or age 21. • Work with school personnel to foster independence as much as possible.
[Note from Terri: It really is never too late to begin these things. Anything you gain today that you didn’t have yesterday is progress. And, even if these things aren’t all checked off at age 21, it is ok—people learn and mature throughout their lives and so will your child. Do you actually know ANY adult alive who had it all together when they were 21?
It is also important to realize that there are lives and choices for people who cannot make any of these gains. The amount of independence a person has with these and other skills determines the supports they need to have in place, NOT the quality of their lives—and don’t let anyone tell you otherwise!]
Back to Kathy:
Network!!!! Talk to people—officially and unofficially. Pick the brains of anyone and everyone. Brainstorm and ask lots of questions. You are looking for ideas, connections and support.
Strategize about what to ask and who to ask for ideas. People you may want to network with are: • School personnel • Agency leaders • Community leaders • Friends • Family • Legislators • List-servs and on-line communities • Your co-workers (your friends’ co-workers, too)
This all seems so confusing—so multi-focal all at once.
It can become overwhelming. So start early and don’t do it all at once. You do need to have both a big picture concept and small steps. I find a visual organizer like mind-mapping or fish-bones very helpful for visioning and for problem-solving. When you have the whole picture in front of you, prioritize steps and start taking steps.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.