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 2 ways:

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 elements.