Tuesday 25 August 2015

Technology & Teamwork Can Ease Transition for Kids With Disabilities

For most, high school graduation is a happy and hopeful celebration as parents launch their children into a successful, independent life.  But there’s an expression that parents of children with disabilities use to describe graduation and their child’s transition to adulthood. They call it ‘falling off the cliff’.  This turn of phrase especially epitomises the new reality of young adults with severe disabilities. 

Transitioning a child with disabilities into adulthood can be fraught with anxiety, loneliness, confusion and even hopelessness, especially if the disability is severe.  In this age of public funding austerity, parents are expected to lead the process of building lives that are safe as well as rich in meaning and purpose for their vulnerable children.   

Organising a safe and meaningful life for a young adult with disabilities is possible, but it requires a team approach.   Achieving a smooth transition to adulthood for a young person with disabilities is a large and complex task.  That’s why it’s important to have the help of extended family, friends and willing, qualified community members.  When a big job such as transition is divided into small manageable parts, team helpers understand they can make a tangible contribution.  This is especially true when tasks are matched to helpers’ skill sets.


The first year of high school is a good time to begin putting together a ‘transition team’ for a teen with disabilities.  Starting early is ideal and will ease the way later on, but a future planning process can begin anytime.  Of course, at an early stage, families’ dreams about supported housing, employment, friendships and social activities will not be fully formed.  A vision for community contribution and money matters will be murky as well.


That’s why research and information gathering are so important.  Every transition team will need someone who agrees to investigate local supported housing options and innovative models of group or independent living.  Someone else can help by compiling a list of community resources for social engagement (these could be clubs of interest, volunteering opportunities, community centres, church groups, etc.).  Another friend or family member might wish to take on researching government supports, eligibility and regulations.  There are disability savings plans, education savings plans that are flexible enough to cover the costs of post-secondary skills training and trust arrangements that do not impinge on disability pension benefits.  Professionals who can help advise families and transition team members are school guidance counsellors, representatives of relevant government agencies, employment counsellors and those in the know about supported housing such as cooperatives, IndependentLiving Centres and allied non-profit agency leaders.  There are lawyers and financial advisors who specialise in wills and estate planning for families who can and wish to protect assets for their child with disabilities. Frequently the best sources of information and lived experience are other parents who have walked the walk and achieved great results.  There are many online family forums and bulletin boards to gather and exchange information about future planning.  A terrific guide to all the practical aspects of future planning is ‘Safe and Secure’ by Al Etmanski and Vickie Cammack.


Person Centred Planning, or Person Directed Planning is a process that helps to clarify life dreams and transform them into practical plans.  Trained facilitators gather information from family, friends and close associates of the young adult regarding his or her gifts, goals, interests and aspirations.  In the course of group meetings, a MAP of dreams is evolved and from there, reasonable and actionable plans are made.  To locate a Person Centered Planning facilitator, google Person Centered Planning in your city.


Like any complex task with multiple players, communication is key.  Tyze Personal Networks is an online tool that can help.  Tyze has a shared filing cabinet for all gathered information about transition as well as a shared calendar for meetings and deadlines.  There is a ‘Care Wall’ where all messages appear so that every team member is in the loop.  Private or small group messaging is possible for private chats.  There is a page where members can ‘set a task’ or claim one by clicking ‘I’ll do it!’  And goal setting with tracking is built in to the programme as well.  Tyze is completely private and password encoded because future planning for a young person with disabilities is a highly personal affair.  Tyze is not searchable and contains no advertising.  And because it’s linked to team members’ email addresses, reminders or alerts are sent automatically when deadlines loom, so jobs get done.   Parents are in control of who participates online; they can invite or remove people from the Tyze network on an as-needed basis and they can share those Tyze administration privileges with whomever they wish.

Like able-bodied teens, young adults with disabilities and their families want to celebrate high school graduation, not mourn it.  Transitioning with confidence and relative ease from childhood to adulthood is possible, but careful planning and teamwork is essential to success.  Teamwork and Tyze can help.

PS:  If you are already using another care coordination tool such as Lotsa Helping Hands or Caring Bridge, try this method of intentionally designing of your preferred tech tool to ease transition of your son or daughter into adulthood.  

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