Saturday, May 1, 2010

The Best Gift You Can Give Your Child (& Yourself) -- Independence!

I know many of you may not be thinking of what your child with special needs will be like as an adult.  But transition to adult life needs to start when children are young and be reinforced all along.  As a parent of a child with multiple disabilities including autism and kidney disease, I realize that not all children will be completely independent adults.  But I’m doing all I can to ensure that my daughter can reach her personal best potential, whatever that may be. 

Sometimes you may have to literally speak for your child.  My daughter was nonverbal and used ASL (American Sign Language) until almost age 6.  This, as well as other forms of technology assisted communication, are options for children who are, or will remain, nonverbal. 

One of the easiest things you can do to foster self-advocacy is to give your child choices.  It can be something as simple as asking a toddler or preschooler which outfit to wear.  But this can be expanded to other areas such as school.  Would your child like to do spelling or math homework first?  And it can be used in medical situations.  Maybe your child doesn’t have a choice regarding getting an injection or labwork, but they can tell you which arm they prefer. 

Children need to learn to speak up for themselves as much as developmentally appropriate.  Once a child is age 14 (16 in some states), they should attend their own IEP (Individual Education Plan) meetings and have input. 

It’s important to remember that transition isn’t just school to work.  It is transition to adult life, which includes healthcare and post-secondary education, (all of which can be in an IEP).  And it’s not just academic, but functional as well.  For example, the doctor can ask your child some questions that they can answer such as if they’ve had an upset stomach, headache, etc. depending on their condition.  College isn’t often thought of for our kids but there is a variety of options.  Students can choose whether or not to disclose their disability at this age.  Although they don’t have the protections like they had in school under IDEA (Individuals with Disabilities Education Act), they can ask for accommodations under ADA (Americans with Disabilities Act) or Section 504.  For more information, check with your Parent Training & Information Center at  There are also colleges which have special programs for students with disabilities.

Families will need to decide if their child will be capable of making educational and/or medical decisions, or whether they need guardianship.  It may sound silly but regardless of the severity of the disability, parents are no longer considered legal guardians unless they go through a court process when their child turns 18.  They may also wish to establish a special needs trust when their child is young so that they are still eligible for Medicaid and SSI (supplemental security income) and parent income doesn’t count against them.  Also there is continuation of medical coverage past age 18 for children with special needs (check with your employer for a form “Certification of Disability for the Handicapped Children Provision”).  In some states families need to know that there is minor consent for mental health treatment beginning as young as age 14.  Families should also know they do not have to give up their parental rights in order for their child to get treatment (for more information contact your local NAMI at ). 

The best resource I’ve found is Centers for Independent Living.  They aren’t residential placement like most people think, but offices where students can learn independent living skills, even an hour at a time.  There are CILS in every state.  Besides vocational skills, CILS teach students self advocacy/self determination.  They can learn money management, how to take public transportation, and other skills which will help them eventually live as independently as possible.

Remain Hopeful,




  • Student Preparation for IEP (simple one pager)

  • Student Transition workbook

  •  Parent guidelines on IEP transition goals

  •  Healthy and Ready to Work (healthcare transition)

  •  Special Programs for College

  •  Centers for Independent Living

  • Transition Toolkit


  1. I agree. My son will be 16 in a couple of weeks and I have started really ramping up my attendance at transition type activities and meetings. I know we've got a few years yet, but not so many. It generally takes my breath away (literally), so I'm getting through that by starting early-ish and getting over that. I am also realizing that I wish I had done more conscious self-determination work with him earlier. He's happy for me to make all the decisions and arrangements and get anyone around him to do for him, instead of taking it upon himself to decide what and how to accomplish what he wants. I am working more with families to start that earlier.