A mother with an adult daughter with severe mental handicap
Right now there's no pressing need. If I had to arrange something for her today, I'd want to visit the place where she might go, see the people she'd live with, and know that some of them are permanent staff. I need to be sure of continuity. I couldn't bear the thought of E. being placed somewhere temporarily, then moved somewhere else and suffering through the upheaval. Because I'm certain that at best, she'll suffer a little no matter what.
I'd prefer something small, homely in scale, where there are personal relationships and E. has the same person caring for her every day, supported as needed by someone else. In any case, it would be lovely if this small home were part of a larger organization (the Arche), where some people—perhaps most—have taken vows or made long-term commitments.
At best, she'll suffer a little no matter what
I'm sure that, at best, she'll suffer a little in any case
I think every person of good will—including parents—who is willing to work on a project like this should join together with others to think through the broad principles, create a structure, foster a spirit of vocation, and launch individual units as they're needed.
To begin with, some parents who have the means could be invited to make a donation—a kind of endowment—to guarantee a place for their children, or to give a house. Logically, the first people admitted wouldn't necessarily be the children of those who made the donation (though donors should have the assurance that someday their child will be welcomed).
Once started, this organization should be publicized to find staff (through parishes, etc.)
How would it be funded?
Most handicapped people receive a pension today. Each home should have backing—some organization or someone who gives a guarantee (a bishop, a parish, religious sisters, for example)—so the house, until it becomes financially self-sufficient, can be supported by contributions.
A father with an adult daughter with mild mental handicap
Too often we've asked ourselves that anguished question: what will happen to our daughter when we're gone?
Personally, I have two hopes, and I pray to God that one comes true. First, that my older daughter, who loves her sister dearly, will take care of her—though I'm reluctant to place such sacrifice and responsibility on my other children. Second, that generous and good-hearted people, inspired by the Lord, might welcome her into some communal living situation or family home, giving her the love that my wife and I can only give from heaven. I also have great trust that something will be realized through that wonderful and indefinable reality called Faith and Light.
A mother with an adult son with moderate mental handicap
I'd rather not think about it. Every so often, in the evening, the thought comes anyway, even though I wish it never would.
I'd rather not think about it...
To me, a family home is a dream.
M. has two brothers, but how can I burden them with a responsibility that weighs so heavily on me?
I'd rather not think about it...
If my husband had a brother like M., would I have felt capable? I imagine a family home with friends—people like those around M. now—or even paid caregivers, but people who care more about the heart than the paycheck.
A mother with an adult son with mild mental handicap
My idea would be to find a married couple (through the parish or trusted people) who'd grow attached to him and live with him. My apartment is already in my children's names. He has a job and could help with expenses.
A mother with an adult daughter with moderate mental handicap
Ideally, some continuity of family life, whatever form it takes, surrounded by the friendship we've found in Faith and Light. I wish so much it weren't just a dream. She needs to be prepared. Just as Chicco came into being, I hope a community for adults will be created, because I believe attitudes have changed in recent years.
A father with an adult daughter with severe mental handicap
An ideal home should always meet certain clear requirements.
First, the caregivers. There must be continuity. One or two people who are the anchor and point of reference for the home—people the residents can see, as much as possible, as new parents. Rotating shifts are completely unthinkable. Others can help out, but we should avoid having too many people rotating through the home. Volunteering should be minimal for this reason and used only to cover emergencies.
The residents. Select carefully so there are no incompatibilities among them.
When? I think we should start now
The place. A house with a garden and, why not, since we're talking about an ideal home, even a small pool.
When? I think we should start now.
Financing. Pensions and caregiving allowances should form the base and could be enough to maintain the home. The real problem is the initial capital cost. I don't see any solution besides donations from private individuals and religious orders.
When? I think we should start now, even though personally, thank God, it's not urgent. But it's precisely the needs of others that should push all of us parents to form small groups to plan small-scale projects suited to the different kinds of handicaps our children have.