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This Is Home

Shane (middle) surrounded by his family.

This story comes from a previous version of the Coming Create Change newsletter.

By Ray McIsaac with Una Tucker, Newfoundland & Labrador

Laurel Drive in Stephenville, Newfoundland is the place Shane Spencer calls home.

At the age of 21, Shane came upon the idea that he definitely wanted his own place. He is now 42. He has been enjoying supportive living ever since. The world unfolded as it should for Shane and he is happy in life.

Shane now lives in the former family home which became available to him when the family moved down the road from Stephenville to Port au Port East in 2010. The family, for the purposes of this article,  consists mainly of the parents, Kathy and Ray, brother Mitchell and sister Haylee.

Having his own home is for Shane is as important as the air he breathes. Ten years ago he was a panellist on the subject of what it means to have your own place. He was asked, “what do you like about having your own place?” He replied, “I don’t know, you get a little peace and quiet every now and then, I guess.” Needless to say, this put things in perspective.

At Shane’s house, the family pictures and paintings are off the wall. They have  been replaced with pictures of the New England Patriots and all things Boston. Looking around there’s a computer, a high definition TV, a blue ray disc collection and all the modern necessities.  Shane is very involved in the community. He knows a lot of people and has an extensive Facebook network of family and friends where he shares a love of music and sports with others. Preparations are being made to have friends in to watch the Grey Cup and eventually the Super Bowl. These are the high points of the social season.

Recently, Shane visited Nashville. He has family there who provided him the opportunity for him to see the beloved Boston Bruins and the city’s many famous sites. The big trip for the future is New York and Boston where the family will go as a unit and this will hopefully happen next year. Some of these opportunities are made possible because Shane has been working for the past 16 years. He is near, if not at the top of the seniority list at Dominion Stores, a division of Loblaw’s. Shane is highly regarded at work and seen as a very good worker. 

The combination of work and having his own place has made life good for Shane. The family is now looking forward to the future and planning to make sure that support measures are in place as his parents age.

In spite of having a lot of knowledge and ability, Shane does require support in a number of areas. His successes are a demonstration of what is possible when a person has the right support.

The province of Newfoundland and Labrador recently developed a provincial program called “paid family caregivers”. This program is in response to labour market shortages making it difficult to recruit and retain support workers. This program comes at a very good time for this family as formal planning and estate planning is fully under way. 

This affords the possibility for Shane’s brother Mitchell, 32, a nutritionist and teacher by profession, to stay home to provide high quality support to Shane. This gives him the opportunity to participate in the early stages of succession planning, a process he has agreed to oversee in the future when his parents are gone. He is also able to help the family in many other ways at the present time.

Shane is getting to go more places, take day trips and going to Corner Brook and St. John’s. They are both part of the local fitness center and are starting to look fit and feel good. Food preparation and expanding diet choices are coming together spectacularly. 

In addition, there is another part of the story. Haylee, sister to Shane and Mitchell, lives with mom and dad. She has significant medical and disability-related needs. She is 30-years-old and equally loves her space. Her mom is an injured nurse who experiences medical complications due to chronic pain and is really a person who needs care but is in a position of having to be a caregiver.

This is a time when the family is looking towards the future.

The goal is to make sure that continuing to live in the family home happens for Shane and Haylee and that the supports are secure and close to what is in place now.

There are a number of people in the family and extended family who have committed to directing part of their estate into a living trust which has been set up. The main family assets will go into trusts set up in the parents wills. Both Shane and Haylee have Registered Disability Savings Plans. These were set up in 2008 when the program was announced. These plans are a vital part of any plan that will see supportive living in the community realized.

There are other issues that are not financial that are equally important to safe and secure futures in the community. 

The importance of sharing information to those who will stand in the place of primary caregivers is critical. Dealing with unique forms of communication, making sure that it matters that a person is happy and that the home environment is friendly and nurturing. 

The challenge of having this plan become a reality without breaking down at any stage is formidable. However, all that can be done is being done to make that happen.