The Autism and Financial Planning seminar on Friday went wonderfully. There was lots of information.
Donna Neff covered why it is necessary to have power of attorney documents and what the limitations are. People can't just plan for their death, they also have to have plans in place for their incapacitation. If someone is in a car accident and goes into a coma, their will doesn't kick in and without a power of attorney, it might not be possible to access their accounts to do things like pay the mortgage and support their children.
She also covered how restrictive ODSP (Ontario Disability) can be. It sounds like they'll take just about any excuse to snatch back benefits, which is why parents have to jump through hoops with Henson Trusts, RDSPs and getting approval for helping out. If a person on ODSP receives more than $ 6000 over a 12 month period or owns more than $ 5000 in personal assets, then their benefits are clawed back. And given that ODSP is only a thousand a month, that's not a great amount to live on.
Her final point was to stress seeking professional, experienced help for your particular circumstances. The law is neither intuitive nor obvious and parents can get caught out easily.
Mattieu St. Denis covered RDSPs and tax planning. The message was familiar, for the RDSP: start saving early, contribute regularly. For taxes, get a T2201 completed, consult with CRA to see what deductions are possible and save your receipts.
The star of the afternoon was Gail Vaz Oxlade. She was hilarious, direct and earthy. She spoke mostly about her experiences with her son. Just like on her shows, she took a direct approach to dealing with him based on what was needed at the time. She and her family moved to a country home so they could be mortgage free and she could stop working. If the school didn't have programs or personnel in place, she paid for them out of her own dime and bullied the school into accepting it. When her son was due to have a particularly inflexible and difficult teacher, she pulled him out of public school for the year and sent him to private school. She had a great deal of success with the Fast ForWord program which trains children to hear and pay attention to all of the sounds in speech. (We used the Hearbuilder series, which we also found effective.)
Her advice to parents was direct and clear:
Guilt is a waste of energy. Focus your attention on what you need to be doing.
Don't get suckered into waiting. Do everything that you can to deal with the situation now.
Be up front with your kids about your feelings and concerns.
Have expectations for their behavior. Accommodations can be made but not at everyone's expense.
Share with other parents. Don't keep your "shameful" secrets, they're nothing of the kind.
Tell your kids what to do instead of what not to do. Make the lessons as concrete as possible.
Life is about choices. They may not be easy or without sacrifice but there is always a choice.
Prepare your kids to take their burdens onto their own shoulders. They have to learn how to manage their environment for themselves.
Easier said that done but I prefer it to the "just have faith and it will all work itself out" approach. Her son was diagnosed at 4 and is now in college on his own. The family made a lot of sacrifices to get him what he needed, but he was also expected to take on his own responsibilities. Gail got him an apartment for school rather than having him stay in residence, one of the accommodations they made for him and they got started several weeks before classes started so that he could get used to going to the grocery store for himself, etc.
I could tell that she's worked incredibly hard and she was honest that there were days she was ready to give up and despair. But she always treated them as temporary delusions rather than predictions of reality. I'm very glad to have had the chance to hear her story.