Holes in the system

As we try to prepare for our sons future, we are realizing there are huge holes in the system.  So a couple of months ago I had a meeting with one of our supports, I thought I might as well ask about what happens when he turns 18??  Should be easy transition right?? Well think again.............

When he is 17.5 years old I have to apply him for disability so that he gets the funding he needs but also at that age he will start changing all his doctors to adult doctors, which seems wrong that he has had the same doctors since birth but that changes at 18?? And to top it off there are waiting lists so that should be interesting.  Those things we will deal with the best we can, but one area that I was shocked with and later have learnt so many others are shocked with is the services we will have to wait for.....................................................................................

Housing 8-12 year wait list
Respite stops and there's a wait list but we can pay our respite with his disability money??????
Services wait list
Day Programs not where we live so I will be transporting him

Ok so I have a huge problem with this.  He will go to school till he's 21 where he will learn as many life skills as possible for him to be independent as he can be, yet it could take up to age 30 before he can get housing??

Don't get me wrong, we would gladly take care of him at home for the rest of our lives, but we know that wont be what he needs, our small community doesn't have programs for him or transit which is one of the many life skills he learns at school.  So when he turns of age do we pack up our whole lives and move to a city centre where he can still have access to programs ect? Do we move our daughter who will be on her last years of high school so her brother gets what he needs??  Do we uproot everyone now? The only place I have help that I need from family and where my business is??

What about the people who care for their children till they no longer cant then do they have to wait 8-12 years??  This makes no sense to me. Why isn't there the housing and supports for people like my son, who will need assisted living? What about the people that need more help, cant help themselves at all??

I feel he may lose those important life skills that he will work so hard on in his high school career, we know he has a cognitive delay, we know he is no longer progressing in his learning, so why isn't there more help for families like ours and how do we try to get more?? Government?? Lol.

I have total anxiety over it, his whole life we have tried to make him the most independent person he can be, we make things and do things to help with that, a wonderful school so he can do the best he can do, even though its 35mins away from home, early morning and late afternoons home.  But we do all that so he can thrive and at 21 he's on his own with no supports, schools done, home with mom and dad and then what??????????????????????????????????????????????? Wait till he makes it to the top of the list, I guess that's the only option we have.

There are big giant holes in our system for him, for others, for families, and where do we start to fix it????