|How Much Money?
by David Wetherow
A parent asked (on the ARC discussion board), “What is
a realistic expectation of how much money we need to try to put aside
for our family member?”
That’s a great question. We tend to think about it in
First, among our 5 children (we’re a blended family),
Amber is clearly the most vulnerable. If our other kids ‘came into
money’ that would be a nice event, but it wouldn’t be essential for
them to have good lives. For Amber, having a source of funds that is
independent of government is essential for her to have a good life.
We don’t intend to cut the other kids out of the
picture at all. However, it makes sense to us to give Amber the benefit
of our entire estate as long as she needs it. So the way we’ve
expressed our intention is that our entire estate will go into a
Discretionary Trust for Amber. When she passes on, the remainder of the
estate will be divided equally among our other surviving children (or
their estates). Amber needs it now. They can use it later. In order to
unburden the other four children from any conflict of interest, none of
them will serve as trustees (otherwise they could possibly be accused of
failing to use the money on Amber’s behalf in order to retain as much
as possible for themselves).
So the first answer to your question is all of it,
as long as she needs it.
It's important for us to keep Amber’s life out of the
hands of the state. There is value to helping her retain
eligibility for financial and other supports, but there is a clear
boundary, and that is when her access to public support becomes the
determining factor in her life; determining where she lives, with whom
she lives, who provides her care, how she spends her days, etc. We want
Amber and ourselves (I’ll get to who “ourselves” are in a minute)
to have day-to-day control over those things.
So one way of approaching the question of “how much
money” is to look at how much money would be needed for her to have
control over of housing, care, transportation, etc. The cost of these
provisions depends greatly on how we arrange them. If we arrange things
in a way that required shift staffing, the amount of money required to
retain control would be very great indeed. On the other hand, if we can
figure out a way for Amber to remain in her home (our home) and to share
her home with devoted caregivers, what we need financially begins to
look like one reasonable family income (which is what we presently have
to work with).
When Amber turned 18, she started to receive a monthly
government check that is intended to provide for her room and board,
clothing , etc. This isn’t a lot of money, but it has no strings
attached. It is her money.
When she leaves school in June, we will probably apply
for ‘continuing care’ funds that will allow us (allow her) to employ
assistants for a specific number of hours per month. Because we (she)
would be the employer (rather than an agency), this source of funds
would not control her life. If it did, we would want to be in a
financial position where we could walk away from it if necessary.
Now, to the question of who am I talking about when I
say ‘we’ want to retain control?
While Faye and I are alive, it is Faye and me, Amber and
her Dad (I mentioned we were a blended family). All of us together or
any of us who are left, will retain control. In addition, we are
pulling together a more extended personal support network for ourselves
and Amber - essentially trying to expand the family circle. At least two
members of the circle will be the trustees of the discretionary trust. I’m
hoping that our four children will consider themselves honoured members
of the circle, but the core of the circle needs to be geographically
close to Amber.
We are trying to follow the principle of having Amber,
her family, and ultimately her personal support circle retain control
over the essential elements of her life. This means we need to organize
legal, financial, housing, and personal support arrangements so that she
has what she needs without being dependent on government 'program'
funding. We will do what we can to retain her eligibility to draw on
government funds, but we have to be prepared to walk away from it as the
source of funding if it begins to interfere with her life.
Are we there yet? Not by a wide margin. But we have a
pretty good idea of what we need to be working towards and a clear idea
of the principles that will shape our actions. The thing that is clear
is that this is not as simple as just making a will, or buying an
insurance policy; it’s a matter of working on several elements at once
and making sure that all of the elements work together. We've
found PLAN's book, A Good Life, to be a
great guidebook for designing the pattern and securing each of the
© 2003 David and Faye Wetherow !