My sister recently went on long-term disability. It's made me think about what Alex will go through when he gets older.
Hopefully he won't have the kind of paperwork trouble that she did, since there will already be a long and unvaried history of him needing help. But on the other hand, he will likely need more supports in place than she does, which could be a challenge.
Usually, I try not to think too hard about the future. We make regular contributions to Alex's Registered Disability Savings Plan to ensure he has adequate funding for whatever he will need. We work on his behaviour with an eye to giving him the greatest possible level of independence and security. But that's really as far as my planning goes.
I simply don't know where he will go or what he will need or what will be available. Will we be required to provide everything? How much will be offset by Ontario Disability?
The questions pile up fast and there's no way to really know the answers. The system is in flux. We even questioned setting up the RDSP, since it will be 60+ years before Alex can access that money and who knows what the government's and society's position will be at that time? (And for those who think I'm worrying over nothing, 60 years ago it was still okay to forcibly sterilize someone or lobotomize them if they were a mental patient.) In the end, we decided the compound interest was something we needed but that doesn't stop me from worrying.
All I can do is try to build a solid foundation. And hope that the trend of inclusion and acceptance continues.