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Preparing our special needs kids for a future without us
 

Sylvia

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Joined: 2014-10-29 Posts: 21
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My husband and I are getting older (57 and 62) and although it’s very painful to think about, we must face the fact that we really don’t have all that much more time left here on earth!  We are now in the process of putting our special needs daughter’s future plan of care in place.  We’ve become her legal guardians, appointed standby guardians and now we are finalizing where she will live.  I’d love any thoughts, ideas and suggestions you might also have about this topic.

16 October 2016 11:46 PM # 1

Healing Heart

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Joined: 2014-10-10 Posts: 701
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I honestly try not to think about it as much as I can.  While I’m aging quickly too - and was not a younger mother when my child with special needs came along - there is no one to leave him with.  Absolutely no one.  We have no family, no close friends.  No one.  So making an advanced directive, will or even designation of a trust is really an impossibility.  And it’s painful to think about that we are indeed the only ones in this world that would ever care and love for him.  So my hope is that I’ll live for eternity and that my body will not fail me in all the natural ways aging usually does so that I can care for him for as long as humanly possible.

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17 October 2016 12:54 AM # 2

Sylvia

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Joined: 2014-10-29 Posts: 21
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We are blessed with 8 other children who are willing to help. Do you guys have other children or a service coordinator that might be able to help you come up with a plan?

14 December 2016 05:34 PM # 3

Healing Heart

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Sylvia - 17 October 2016 12:54 AM

We are blessed with 8 other children who are willing to help. Do you guys have other children or a service coordinator that might be able to help you come up with a plan?

8 children sounds so awesome.  I always wanted a big family.  I have only 1 child that I could rely on the older our SN child becomes and I’m hoping he’ll be able to assist, but at the same time I know he’ll want a life and family of his own and worry I can’t expect him to assist us into aging years with our first born.

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Everyday Holds the Possibility of a Miracle

09 January 2017 09:24 PM # 4

Angelyn

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Joined: 2015-04-27 Posts: 28
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This is a complicated and emotional process to think about isn’t it?  We have another child besides our child with special needs, and she’s only 5 right now, but I’d hope she would be willing and able to help ensure her little brother receives the best possible life someday when my husband and I are no longer around or able to care for him.

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Angelyn

16 January 2017 12:32 AM # 5

Gaia

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Joined: 2017-01-16 Posts: 4
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Set up a Henson trust (or equivalent depending on your country).  You can google the trust to get the gist.  Basically, you set all your funds into a trust account, and name up to 3 Trustees for it.  In Canada you cannot name your children as beneficiaries, since the government then claws back dollar for dollar any monies that the children receive.  I would recommend a lawyer as one of the trustees.  The other two would be perhaps family members, or even trusted professionals.

17 January 2017 08:33 PM # 6

Healing Heart

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Gaia - 16 January 2017 12:32 AM

Set up a Henson trust (or equivalent depending on your country).  You can google the trust to get the gist.  Basically, you set all your funds into a trust account, and name up to 3 Trustees for it.  In Canada you cannot name your children as beneficiaries, since the government then claws back dollar for dollar any monies that the children receive.  I would recommend a lawyer as one of the trustees.  The other two would be perhaps family members, or even trusted professionals.

Wish our trusts were that easy, it’s much like that here, you have to be very careful because the government indeed does want to claw back any funding that they can.  Trusts here are also very expensive to draft - attorney costs can range well into the 3K-4K range.  Even the Able Act has some big disadvantages and fine print that make me hesitant to recommend it as a good option.

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