Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, May 27, 2012

Transition Planning for Teens with Disabilities

Are you the parent of a high school aged student with a disability? Do you wonder what is all the talk about "transition" or are you a parent who has a clue what is going on? I am here to tell you I am not. I have a kid turning 16 in a couple of weeks and I'm already feeling behind in the game. Having Angela as my oldest child with Down syndrome is a lot like doing the "oldest child" thing all over again. This is far different than graduating a typical learner! Friends often call me looking for input about issues they're having with school and I can usually send them in the right direction. Unfortunately when it comes to transition planning I don't have a any idea at all who to call, when to call them, or what to ask when I do!

A couple weeks ago I was invited by PACER (Parent Advocacy Center for Educational Rights) to sit on a parent panel before the State Department of Education to discuss issues related to transition planning.

When I got the email, I laughed out loud. Did you see my first paragraph where I said I don't have a clue what is going on? I replied that I didn't think I was the right person to sit on this panel. People who sit on this panel should have some idea of how the transition process goes.

"No, actually you're exactly who we want on the panel. You know how to advocate for your kids and yet you don't feel prepared for this time in your child's life. There are many other parents out there in just the same boat and you can help us understand why."

Ummm....ok. I think.

So Monday was the day. It was a very small group: Myself, three other parents, a representative from the Dept. of Ed. and a representative from PACER.

I thought it was interesting that the other three parents have kids who are on the autism spectrum. I was the only parent  representing the "other" students. Those who have cognitive impairments due to diagnosis of Down syndrome or other syndromes that affect development.

Here are some questions that were asked. I won't tell you my answers, because these are questions you need to ask yourself about your own child's IEP and transition planning meetings.

1.       What is your greatest dream for your child as they transition into adult living in the community?

2.      What is your greatest fear when you think about your child living as an adult in the community?

3.      Name your child’s greatest strength?

4.      Thinking about your child’s IEP, are there goals that address postsecondary education of training?

5.      Thinking about your child’s IEP, are there goals that address preparing for employment?

6.      Please name the outside agencies or services that have been involved in your child’s transition planning. Have they attended the IEP meetings?

7.      As a parent, do you feel like you are a valued member of the IEP team?

8.      Is your child involved in the transition planning process?

9.      Any other thoughts you would like to share about your child’s transition planning?

The discussion was very interesting, and I will say I learned some things. We also discussed things like what kind of job training is in place for our students. Interestingly all the parents stated everything seems to be centered around factory work or food service. The other parents - who's kids are older than mine - all agreed there seems to be a problem with job training in high school being individualized, with all the kids getting the same training as if ALL the students will be working at McDonalds or on an assembly line.

With three years left until Angela graduates I feel like I already feel like we're running out of time to get the necessary steps completed. I want Angela to have a job she ENJOYS, and to be living as independently as she possibly can. Angela has made it very clear she does not want to live at home, but on her own with her friends. It's my job to see to it these things happen for her.

1 comment:

Tamara said...

Shawen's special ed teacher in middle school started talking about transition in his IEP - I think at the end of 7th grade, but maybe 6th. I've always had a general idea of what I expected for high school - working on academics as much as possible the first four years, introducing "co-op type" services in his junior/senior years, and 100% with co-op type services after he "graduates" with his class. We've never retained him, so we have lots of time on the "back-end" for transitioning.

Illinois is broke, so adult services are very limited. I finally got him on the PUNS list (waiting list of 20,000+ people for disability services) last year. Unless we have some miraculous economic recovery soon, it's doubtful he'll ever get the services he needs from the state. This is one reason why I joined with other parents to start a disability cooperative last year. Our website (which needs updating) is

Every state is different, but I think the mission and vision of the cooperative highlights what we all need to be thinking about - continuing education, training for those who are responsible for adults with disabilities, social/rec opportunities, employment and housing.

It's hard to know what your child's abilities will be when they're young, but you make a plan, then tweak it up or down as you see their interests and skill sets evolve.

Because of some challenges we were having getting Shawen in classes the past two years, we've layed out a long-term plan for high school. We did pretty much what I wanted to do since he was young - with the academic/life skills (co-op, etc. - not "laundry") changing each year. There is a State agency rep that's supposed to attend IEPs, but from what I hear, she doesn't unless you push. I'm hoping she'll attend next year's; but I plan to have some conversations with her in the next six months.

The employment piece is hard, but housing is harder. I'm just focusing on preparing for the employment piece now and will think about housing another day. It's doubtful that Shawen will be ready for an independent living situation the day he's done with high school, and that's okay. We'll have to negotiate that on our own; but, hopefully, we'll have the cooperative to help.

The employment piece is interesting. The most inclusive models in the past have focused on supported employment - where the person is put into a traditional job and has a job coach to help them perform the tasks. It hasn't been all that successful (so we still have tons of sheltered workshops, etc.). The newest model is called Customized Employment. It's an interesting concept - google it. It may be something you want to educate yourself about and find an agency that provides those types of services. It's not cheap. It's an extensive discovery process and then working with employers to carve out a job based on the person's interests and abilities.

I think we've always known that this is going to be the hard part, but I know you'll figure it out! There are resources out there. And if you can't find the right ones, you can certainly create them!