This is one of the articles supporting genetic screening
that i found.
CLIENT - Special needs
statistics and demographics
parents with disabled children, estate planning means knowing all the options.
Mark and Linda Allen (not their real names) had their daughter, Cathy, last year, they had no idea of the mental and emotional
challenges that lay before them. Born with a genetic spinal disorder, Cathy requires around-the-clock care and over her lifetime,
the Allens can expect to spend thousands on medical care, not to mention the home renovations necessary to accommodate her
physical needs. But these costs are just half of their financial worries. The other half is estate planning-how can the Aliens
make sure that Cathy is cared for if something happens to them?
Diana Frizell, a financial planner at Garry Oak Financial
Group in Victoria,
helps clients with these emotionally, taxing questions all the time. For her, advising clients with special-needs children
is part of a larger personal interest. As the legal guardian of her brother who has Down's syndrome, Frizell knows all too
well the financial planning challenges that face caregivers. "The major issue for most parents is making sure something is
in place to ensure their child is cared for after they are gone," she says. "This means setting up an insurance policy that
designates funds to be held in trust for the child as well as a will that refers to a trust document outlining who will be
administering the funds to the child."
It is this task of specifying a trustee-the person entrusted to make sure the money
goes to the child-that can be the most difficult for a parent, says Frizell. "There's definitely an emotional side because
parents want someone who cares about their child's well-being and has their best interests at heart. They don't want someone
who just has their eyes set on the lump sum of money."
And then there's the issue of making sure the policy payout has
little impact on the beneficiary's government benefits. As it stands now. every disabled person is entitled to a monthly payment
from the government which continues throughout his or her lifetime. However, if the individual receives any extra funds, such
as through an inheritance or an insurance policy that exceeds a certain limit, his or her benefits are significantly diminished
(in Ontario, for example, this lima is $100,000).
"Why should a disabled person be penalized for the financial success
of their parents" says Brian MacIvor a lawyer with Cheadle, Johnson, Shanks & MacIvor in Thunder
Bay. Ont. "Some clients look at the disability support program as a right, not just an entitlement.
Whether or not a disabled person receives benefits should not be based on their parents' net worth".
MacIvor paints this
scenario: Say your clients have three disabled children and $250,000 that they want to equally distribute through a trust.
Under Ontario's $100,000 rule, am' government benefits would remain unaffected.
But if you have a set of parents who have managed to save $1 million and they want to leave it all to their two disabled children,
each child could get only $100,000 in order to continue their eligibility for government benefits. So is there a way the parents
can bypass this rule?
"They could set up a discretionary trust with eight other beneficiaries" says MacIvor. The parents
would ensure the trustee knows the mandate of the trust through a will which is to provide funds to care for their children.
"Since trust law gives the trustee the power to decide who gets the money, as per the parents' wishes, the trustee makes sure
these other beneficiaries get nothing while the children get $100,000 as well as access to the rest of the funds" he saps.
These funds rarely go to the child as cash and are usually used to purchase items like clothing or medical supplies for the
child, says MacIvor, which leaves any benefits intact.
Also, a parent can leave a house or a car to their child without
affecting their benefits because these things don't provide a liquid return, he says.
Paul Hirtle, a Thunder Bay-based
estate planning specialist with Merrill Lynch Canada and president
of the Northwestern Ontario chapter of CAIFA regularly refers clients with special-needs children to
MacIvor for legal advice in planning their estate. He says that insurance policies are not only- a good way for parents who
otherwise don't have the resources to leave money for their special-needs child, but also a way to access the taxdeferred
growth that occurs in a cash value policy.
"The cash value can be transferred to the child on a direct rollover basis,
so it doesnt affect their Ontario Disability Support Program benefits," he says. "This gives the parent the ability, to hide
some cash value in a policy".
Despite the regulatory red tape, helping your clients make sure their special-needs children
have the quality of life they want is challenging, but it is possible if you're aware of all the options. And while youre
advising these parents, Frizell says it's also important not to forget the child. "Special-needs people are people too, and
it's easy to lose sight of the fact that losing a parent is a huge emotional issue for them" she says. "This makes it even
more important to make sure that the person who is left to take care of the child is someone whom they trust and love. I focus
on helping clients figure this out".
This article talks
about how there is a limit on the amount of money a family can leave for their disabled children. There is no limit on the
amount they leave for their kid's with out disabilities. They cone only leave $100, 000 for their disabled kids in Ontario.
They can leave other things to their kids like their house, or car, just not more money. It's supporting genetic screening
because if you think about it, it's saying that genetic screening would be beneficial in this case. This is because you could
do the screening on your baby before its born and not have as many to problems to deal with when its living.