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I know it must be a great concern of parents of adult children who will not be able to fully care for themselves when their parents are gone to provide for those children via trusts and estate planning and/or other arrangements. My heart goes out to you and all such parents. I can offer no advice or suggestions (as I know nothing of the matter first-hand), but I have a cousin who has two such children, and I know it weighs on her and her husband as they reach their late sixties. Both of their children are capable of working, but only at very low-wage jobs under special conditions; one cannot be in a position of dealing with the public. Best wishes to you as you travel this difficult road.
Both a blessing and a curse. Having worked in the DD world I know how loving and giving they can be as well as how much care they require. Kudos to you and your wife and all the best. You have to be very special people.
One of the greatest challenges those of us with adult handicapped kids face is the significant cutback in services. Out here in California, they've cut back on the payment to those folks by over 30% the past few years, plus eliminated many items such as dental and eye care.
When raising these kids, and like many others we also raised "normal" kids too, you often have to make trade offs for time availability. In our case, like many others, we couldn't be a two income family since we needed to make time available for all of the "additional" appointments and services we needed to do for our special daughter (while still providing adequate interest and time in our other kids too). As a result, we had to make due with one income, and also incurred quite a bit of additional out of pocket expenses in providing adequate care and services, especially in a declining services environment.
So in retirement, we continue to try and balance the issues. In our case, due to the cutbacks in medical care for these types of folks we had to purchase additional healthcare insurance to try and ensure she at least gets reasonable care.
Not complaining at all, I had a decent work career and earned a good pension, so we are OK. Just wanted to point out a bit of a different perspective on what some of us have to consider in retirement.
In my case my son is a disabled veteran who has been declared incompetent. The VA takes care of all of his medical including dental and between them and SSD he has adequate money. The question is, who takes care of him when we are gone. Arizona has a terrible record of guardians ripping off the veterans they are supposed to care for
In my case my son is a disabled veteran who has been declared incompetent. The VA takes care of all of his medical including dental and between them and SSD he has adequate money. The question is, who takes care of him when we are gone. Arizona has a terrible record of guardians ripping off the veterans they are supposed to care for
I have a niece that is 30+ with <8 year old mental capacity and numerous other handicaps. Between the government programs and family help the finances have not been the primary worry but the guidance and supervision. This person is difficult for loving parents to handle so we worry how to provide a home long term with any amount of funding no less the modest funds that are available.
The worse part of being a parent with a child like that unable to care for themselves is that eventually the parent will go first. My mother's sister born handicapped blind and no sense of touch. Not paralized but just short of that. Well my grandmother cared for her until she passed away in 84. Then my mom who could not take care of her got her into a really nice nursing home. Now my mom is gone and still my aunt is still kicking.
The worse part of being a parent with a child like that unable to care for themselves is that eventually the parent will go first. My mother's sister born handicapped blind and no sense of touch. Not paralized but just short of that. Well my grandmother cared for her until she passed away in 84. Then my mom who could not take care of her got her into a really nice nursing home. Now my mom is gone and still my aunt is still kicking.
As difficult as it may be to reconcile ourselves to, we cannot save or protect our children, special needs or otherwise, forever however much we may wish to. We can make provisions and hope they're enough but in the end, at some point it's out of our hands. That seems to be the human condition. If there are siblings we can only hope they'll step up and fill the hole we'll eventually leave.
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