Parents of children with disabilities have their own special needs when it comes to financial and estate planning.

A common worry for these parents is that their disabled child will not be adequately provided for when the parents are gone.

For guidance, many have turned to Graeme Treeby, 55, an insurance broker and co-founder of the Special Needs Planning Group, based in Stouffville, Ont. Treeby is a father of three whose youngest daughter, Jenny, has cerebral palsy, developmental delay and other issues.

“When we first attempted to plan for Jenny, we quickly realized that there were very few sources of valid information,” Treeby says. “So, it seemed like a logical move to share my knowledge with other families in similar circumstances.”

Treeby gave up a career in accounting to found Special Needs Planning in 1997. He has been involved in this type of planning since 1993. Over the past decade, he has become a well-travelled speaker and authority on how families can ensure disabled relatives have access to family wealth without being disqualified from the Ontario disability support program, which provides very basic income of up to $999 a month, as well as prescription drugs, basic dental care and some employment counselling services.

Ninety-nine per cent of Treeby’s business is helping families set up absolute discretionary trusts, known as “Henson trusts.” A typical client is a parent or grandparent of a person with a disability who is receiving ODSP payments.

“My practice is almost exclusively focused on providing funding for Henson trusts via life insurance or investment programs,” Treeby says. He finds this niche works better for him than attempting to work as a generalist.

Treeby does not charge a fee to people who seek advice from Special Needs Planning; he makes a living from selling insurance products to families who choose to use insurance to finance the Henson trusts they set up for their children.

Henson trusts are named after the family at the heart of a prece-dent-setting court case, launched after Audrey Henson became the beneficiary of an absolute discretionary trust set up for her by father, Leonard Henson of Guelph, Ont. Henson Sr., fearing for his daughter’s future, had left the money to be administered on her behalf by the Guelph Association for Community Living. But the Ontario government ruled that Audrey owned the assets and cut off her disability payments.

A court ruled in favour of the association, but the Ontario government appealed. In 1989, the case reached the Supreme Court of Ontario, which upheld Audrey’s right to draw benefits. Since then, hundreds of families have set up similar trusts.

Because of the complexity of the issue, Treeby’s expertise is much in demand. He helps people through the process of setting up the trust, and can help newly appointed trustees who find themselves in charge of a sibling’s or another relative’s life.

Treeby is also researching the details of the new federal registered disability savings plan, which won’t be available until late this year or early next year while financial institutions work out the kinks. The RDSP will be similar to the registered education savings plan, in that families will contribute to the plan and receive government grants to augment their contributions, which will grow tax-free.

Treeby obtains new clients through referrals, his Web site, service agencies and estate-planning seminars organized by disability support groups. “My biggest [referral source] is word of mouth,” he says. “There was a time, originally, when I had to cold-call. Now, I do a seminar and wait for them to call me. But I don’t have to wait.”

Treeby meets with families, usually in their homes, to assess the situation, including how much planning has already been done in the areas of wills, powers of attorney, insurance and taxes.

Demand for Treeby’s services is growing. He has travelled throughout Ontario, going as far afield as North Bay and Sudbury; in busy areas such as Burlington, Mississauga, London and Tillsonburg, he has hired associates to help him.

Given the demand, you might think there would be more advisors stepping into the niche. But it’s not for everyone, Treeby says. Dealing with families grappling with severe disabilities can be emotionally draining, he says, and is best suited for someone who has a relative with special needs.

“My organization is a small group of five advisors, all of whom are parents of a person with a disability,” Treeby says. “This provides us with a unique perspective on the issues since we are living them.”

@page_break@Treeby is happy to split cases with other advisors. “If they want to become experts, great,” he says. “If not, they can give us a call.”

Treeby has written a book on the subject of planning for relatives with disabilities, Removing the Mystery: An estate planning guide for families of people with disabilities. It’s available through the Ontario Federation for Cerebral Palsy, for which Treeby acts as a consultant, helping to co-ordinate development of its long-term planning and support program. Treeby has also volunteered on the board of directors of the Community Living York South and serves on various committees of that association.

Treeby studied at York University in Toronto and acquired a certified general accountant designation, which he no longer holds.

His interests outside work include his 1976 Triumph Spitfire and a new motorboat. Says Treeby: “My daughter loves riding in both of these.” IE