Saturday 18 April 2015


I wrote this for an audience of adults with disabilities who want to get started using a tech tool to coordinate the help of friends and family in a circle of care.  But the model works for seniors too, as well as anyone who requires some assistance to get through a life challenge.   Here, I talk about Tyze Personal Networks, my personal favorite tool and the one I use in my own family.  But the principles are the same for Lotsa Helping Hands, Caring Bridge and other online tools - just keep in mind that Tyze has the same data security as internet banking.  It's so private that it's owned by a health care company and can be used to include medical professionals in a circle of care if that's required.  Don't forget, Tyze is free!

Having a disability can be a major or a minor inconvenience.  Of course, the severity of a disability will dictate how much and what kind of assistance is needed.  But the quality of help people have – the kind of help that is there just when you need it, then disappears so you can get on with your life – that kind of really assistance is harder to come by.   A personal support network is designed to coordinate the good intentions of both friends and professionals so that their helpful actions are coordinated, not intrusive, and driven by your wishes and needs.   

To illustrate what a network is and what it can do, here are two scenarios.

Life Without a Network:

Paul is a 37 year old, married father of two.  He and his partner Amanda have been struggling to care for their children after Paul’s motorcycle accident left him with chronic pain.  Paul walks with a cane and uses a wheelchair for longer distances.   Paul and Amanda met at a local bowling league and Paul hopes to someday return to his hobby.  Paul receives disability benefits and since his accident, he remains friends with some of his former co-workers.  They have offered to help, but as time goes by, they call less frequently.   Before Paul’s accident, Amanda worked part-time and was active socially in her neighborhood community through schools, her church and her gym.   Now, Amanda has taken a full-time job to help the family and Paul often finds himself at home alone. 

Paul identifies his wish list as being able to manage his pain in order to help more around the house, to make a contribution in his community and to reconnect with friends.  Paul would like to explore how he could bowl again, but he isn’t sure how that could happen, given his pain.

Life With a Network:

Paul set up a Tyze Personal Network.  He learned that Tyze is completely private and that members of his network will need passwords to enter the site.  He sent email invitations to join Tyze to his partner Amanda as well as to two neighbors, two former co-workers and one friend who continues to play in the bowling league.  Paul knows that he can add more friends later. 

Paul’s children need a ride to their weekend gymnastics class and Paul would like to help.  Paul doesn’t drive, so he posts a request on Tyze asking if anyone could bring his children to their class.  A neighbor sees the request in her email, logs in to Tyze and clicks ‘I’ll help’.   

When Paul posts on the Tyze Carewall that he would like to get back to bowling somehow, his league friend speaks with team members and with staff at the facility to brainstorm ways of including Paul.  The bowling league friend posts a date and time on the Tyze calendar to visit Paul at home where they will discuss possibilities.
Paul posts on the Carewall that he would like to see friends, but is never sure if he will feel well enough on a given day.  Amanda suggests that network members post on the calendar when they are free for a visit and Paul can phone last minute to let them know if he feels like company. 

Paul and Amanda are beginning to understand that friends and extended family want to help, but are intimidated by Paul’s injury and the family’s needs. Tyze helps to break down big needs into small tasks and schedule them into a shared agenda.  Everyone in the network is beginning to feel the benefits of contribution and friendship. 

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