Co-housing

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DaisyJane

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Yesterday I picked up the keys for my son's house! A couple of months ago my husband and I made an offer an a two bedroom bungalow around the corner from our own home. Far enough away that I have some emotional and physical distance, but close enough that I remain connected to all aspects of Matthew's care and life.

The plan is that Matthew and a friend with disabilities will live together, with support staff, and a full-time housing assistant. My eldest son has asked to be the housing assistant for the first winter. There is a suite in the basement that works well and allows the assistant to have their own space.

We've had the architects through and hope to begin renovations soon!

I have been flirting with names for Matthew's house and like LittleL'Arche - but are interested in suggestions.

I would love to hear other stories of co-housing. The good, the bad, the ugly!
 

KayTheCurler

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This sounds like a worthwhile, creative adventure. Sending friendly thoughts your way for success.

Little L'Arche seems to be a great name.
 

Lastpointe

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That is really wonderful. I hope things run smoothly for the renovation

Wonder if L’Arche is a protected name whether you add little in front or not?

“Our Home”
 

BetteTheRed

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Does Matthew's disabled friend have similar disabilities, or his own set of challenges?

Support staff would be PSW's? Housing assistant would plan menus, shop, prepare and serve meals, clean house? That is so cool that Eldest son wants to pilot the role.
 

DaisyJane

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Matthew's friend has similar disabilities. Both boys require their own 1:1 support. We will likely share overnight support, but during the days each individual has their own tailored care. Matthew is tube fed, so things like meals aren't an issue. The general plan, bearing in mind we're new and don't really know what we're doing, is that the support staff (PSWs, nurses) will provide care, while the housing assistant deals with the house (maintenance, snow removal, grass, etc). The housing resident also provides onsite support and "overseeing". They are my "eyes on" - in exchange for free rent. Our eldest will do it for the winter, while we get the hang of things, and we already have a plan for who the next person will be. We want to create a win-win situation that will support someone who values community and embraces the idea of living with people with diverse needs, in exchange for free housing.

Down the road we like the idea of this housing being available to a young couple or perhaps refugee student (we live near a university). We believe that the more people who come to care about, and value, our son is a good thing.
 

ChemGal

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Sounds like a good plan, as long as relationships stay intact ie. things like the friend paying rent & for the shared overnight support, plus visitor issues.
The housing assistant likely has the biggest potential for problems, but as long as you find the right people, and always have someone who can be a backup in case of a sudden change in the situation.

It's something rather unpleasant to think of, but if Matthew were to outlive his friend do you think you would know another family that would be interested/able to afford the costs?
 

DaisyJane

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Sounds like a good plan, as long as relationships stay intact ie. things like the friend paying rent & for the shared overnight support, plus visitor issues.
The housing assistant likely has the biggest potential for problems, but as long as you find the right people, and always have someone who can be a backup in case of a sudden change in the situation.

It's something rather unpleasant to think of, but if Matthew were to outlive his friend do you think you would know another family that would be interested/able to afford the costs?
We've thought of a lot of those issues. Part of the reason the house is around the corner from us is so I can be there in five minutes should the need ever arise. The two families have known each other for about 20 years - we met when our kids were babies at a local treatment centre. We've talked about the inevitability of conflict, but hope our commitment to the kids and each other will help us.

In terms of costs. My husband and I own the home (legally) - but a beneficial trust has been established for Matthew. In essence, he owns the house outright. Matthew can also afford its costs without a housemate. Because he is incapable he cannot legally own a house - hence the beneficial trust. This means that if my husband and I were to die the house doesn't become part of our estate.

If Matthew were to die - a reasonable question given his life expectancy - we've discussed a few scenarios. We would sit down with our friends and explore whether they would like their son to remain in the home and find a new housemate. If so, either we would continue as landlords and they would rent, or we would sell them them the home for a reasonable, but not necessarily "market" price that they could afford. If they wish to explore other options the thought at the moment is that we would either sell, or bequeath the house to Matthew's primary caregiver.

I agree the housing assistant could be challenging. Right now the thought is that the assistant is hand picked with care. My eldest will do it for the winter and we have a caregiver that we plan to offer the suite to afterward. The thought is that the housing assistant MUST be someone who is invested in the quality of life of the boys.
 

DaisyJane

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The other part of the plan is that each family, at least for the moment, will choose the pace and timeline for which their son transitions to the home. We plan to have Matthew there 3-4 nights a week as soon as renos are completed, while the friend may only come for one weekend a month initially and transition to more time at the home over several years Each family will tailor their child's care and transition as per their needs. There is little sharing of staff because of the needs of the two boys - other than overnight care. Both boys have well-established teams of caregivers that will be simply be relocating where the care is provided.

Right now, the biggest concern I see, is the possibility that the two well established teams of caregivers might not always see eye to eye, and that meshing our approaches to care might take some time. It helps that we expect that each child will continue with their own routine.
 

Lastpointe

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Daisy Jane

Was the decision to buy a house and set up your own “group” home because you had trouble finding something suitable for Matthew?

And that makes me ask, Will you have things to consider like employee health and safety laws, health inspections, .......

I have another friend whose has a child, now a young man. They struggled for years but seem to have lucked onto a home. However I know they constantly worry that he will be too much for the staff and asked to leave. And then what? By coincidence their child is also a Matthew and i know they looked for a long time to find something for him as he approached adulthood

I wish you the best. Judging by your comment about both boys easing into the new home, I gather they both react strongly to changes in location and staff. It is nice for him to have a friend to live with, such a normal part of growing up. I hope they will thrive and interact somewhat and experience life on their own

“On Our Own”?
 

Waterfall

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Will you be creating a website that journals your experience?.....my sister and husband have been considering this very thing for their son, and she would benefit from your family's experience, and I suspect others would too.
 

DaisyJane

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Lastpointe. Let me see if I can answer your questions.

My first thought is, define "suitable". We had a shared care arrangement with a facility to provided adequate care to Matthew. However they were an institutional model (group home) that was fairly far away. We could have lived with it, but we wanted something closer and more community based. I think what we will end up with will be vastly superior and more tailored to Matthew's needs.

We aren't a formal "group home", so we don't need to jump through all the hoops. We already do things like manage schedules, payroll, WSIB, taxes (in some cases) and so on. Some staff are "staff", and some are considered private contractors and are paid accordingly. These are things we did our own home, so moving them to Matthew's home shouldn't be too challenging - I hope. I'm the first to admit that I don't quite know what I'm doing and I expect to learn a lot on the way. But I figure Vanier didn't know what he was doing either, and it all worked out!

As your friends have found out, long term housing for adults with disabilities is a real problem. People are increasingly exploring creative options and we wanted to be part of that.
 

DaisyJane

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Waterfall.

I know I want to write about this experience. For me, writing is often a way I process an experience. I maintained a blog for a while, but I haven't blogged for a while. As my dissertation heated up, all my writing energy seemed to be focused in that directly. I haven't decided if I will resurrect my old blog, start a new one, or journal in a different way. It has occurred to me that this journey could offer the foundation for a book on caregiving/co-housing/disability. I'm going to need a new outlet now that my dissertation is done!!
 

Lastpointe

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Best of luck for the Reno’s and the house buddies

Best buddies house?
 

Seeler

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I hope that you will remember your friends on Wonder Café 2, and let us know how things are going (even if it's just to connect us with your blog). I followed your postings here from the beginning, and was pleased to meet you and Matthew and at Five Oaks way back in the original Wonder Café days.

Best of luck in in your housing arrangements. I'm glad that your older son has chosen to be involved.
 

Mrs.Anteater

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A bit different issue, but I spoke with a neighbour of mine, who has severe sensitivities and lives in a rented duplex at the end of my road. She noticed that her neighbour was using scented products ( their two pets pee/ poop on puppy pads because they don’t walk the dogs), as well as the laundry seems to exhaust somehow into their attic/ laundry room. She has been reacting severely to it and offered them to buy them a different laundry detergent as much as they need. They reacted quite nasty. Really difficult to live in rented space if you have to deal with that. Co- housing could be a solution if you find someone else with similar problems. There really aren’t enough divers options out there for people with special needs.
 
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