ditto here, except you cannot assume you will outlive your child.
One of the things we pay taxes for as a society s to provide a floor of economic support for disabled citizens, so do not think if it as charity or welfare. Just because some abuse the generosity and civic compact of our society with programs for the disabled, does not mean all do
Right, but you darn well know we are not the norm. We have a son with a rare genetic syndrome (missing a chunk of a chromosome) who is almost 7. We have been preparing financially for him since diagnosis.
For those of you who don’t live in our world who are reading this, this is what it means: We are financially responsible for our son for all 70 (or so) years of his life. The burden is immense as he will never live unassisted. Special needs financial planners, lawyers, therapists and doctors are all involved in setting up a special needs trust and a 2nd-to-die (rich) life insurance policy (and 2 $1M policies on me and my wife) and paying for them annually is not easy.
My wife and I make a good living and we already, with 14 years at the LEAST left with our son under our roof, already thinking about housing and living expenses for our son. And I really don’t know if we’ll be able to do it to the extent we’d like to. How can we know if we’ll be able to physically handle him in the future? We certainly won’t be able to forever, that’s for sure.
Private assisted living that we can trust? How many thousands of dollars/month will that be in 15 years?
The lack of adult special needs housing for all incomes is a HUGE problem, no matter how you slice it.
I understand that - but my greatest fear is that she would become a ward of the state.
My wife and I accept that we cannot do what others' our age are able to do - most of our life is lived in our home (or church), and tens of thousands (out-of-pocket) have been spent on specialists and therapies.
We are parents - that is the job God has tasked us with - we joyfully serve Him this way.