Jean Misener is a mother of 4 sons. Her third son Jeff has autism. This year Jeff is turning 60 years old.
Jean has been advocating for Jeff his whole life. When Jeff was young he attended Portia School and was in a self contained class. After Jeff finished school he attended a day program at The Eileen Langley Centre where Community Living is now located. Jean knew it wasn’t the right fit for him. He didn’t connect with others who attended the program and he would prefer to sit and interact with the staff.
It was at this time that Jean met and became friends with Barb Leavitt. Barb asked Jean what her vision was for Jeff. Jean really didn’t have a plan other than his name was on a waitlist for a group home. Something she was unsure of but really didn’t know any other available options for Jeff. Jean admits she didn’t know what she would have done if that call ever came.
There was no respite available at that time, but friends would pick Jeff up and take him to their homes for dinner or overnight to give her a bit of a break. Jean knew that she wanted Jeff to have a good life, but what would that look like? She also knew that she wanted to plan for Jeff and have things in place for him for the future.Jean knew she couldn’t do it alone.
Fortunately, Barb was willing to help. She called friends, neighbours, acquaintances to ask them if they would be willing to form a circle of friends for Jeff. Before long the circle was complete and through conversations the group realized that they all wanted the same things for Jeff. The work began on a vision of what a good life for Jeff would look like.
At this time Jeff was supported through Family Services Perth Huron and things like living in his own home, having the security of funding support, living in a home that felt like a home with a big window so Jeff could see outside were at the top of the list.
Jeff requires support 24 hours a day and his circle knew that in order for Jeff to have a fulfilling life he would need funding so Jean, family members and members of Jeff’s circle started writing letters to the ministry asking for funding. Jean recalls writing so many letters that they jammed the fax machine. Time and time again their request for funding was denied. Historically, individualized funding was only given to families who were in crisis. Jeff’s story was unique. Eventually because of their perseverance and perhaps a stroke of luck, their request for individualized funding came through. It was time to start bringing Jeff’s vision to life.
Jean believes that individualized funding has given them the opportunity to be more in charge, have better communication with staff and to adjust the budget as needed. It has helped to put Jeff in control of his own life. He has been able to travel places and try new things with staff while fostering meaningful and purposeful relationships with others. Staff include Jeff in outings and introduce him to friends and family. Jeff’s staff knows that Jean is just a phone call away if they have questions. Together they have always tried to pick what has worked and then improve upon it whenever possible.
Jean states that even though advocating is a lot of work, pleading, making phone calls and writing letters, it is worth it! Connecting with people and building lasting relationships that enrich Jeff’s vision are so important. People want to help, but often don’t know how to help. Inviting new members into Jeff’s circle of friends helps to keep his vision relevant. Barb refers to the members as the,”The Vision Keepers.”
Jean’s message to other parents is,” Don’t wait, start early. Have a vision and aim for that.Good advocacy is building allies and it takes time.” As a parent, Jean says having a circle of friends in place for Jeff has given her a piece of mind and a reassurance that Jeff’s vision will carry on after she is gone.
Today Jeff lives in his own home. He shares his home with a couple who live downstairs and support him when needed; however they have become like family to Jeff. They enjoy meals and activities together. Jeff continues to live his best life making friends along the way. Most recently he had coffee with his favourite taxi cab driver, Doug.