Ageing with Down's

DNA Daily News and Analysis (India) - 14 Dec 2008

Quote :

The current generation of people with Down’s Syndrome — an abnormality that causes developmental and physical disabilities — will be the first to survive its parents. But how do parents arrange for financial, residential and caretaker needs? Kareena N Gianani reports

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Wow, that was depressing.

Oh that was interesting reading about different ideas with adults. It's a great reminder to me as I think sometimes I keep my head in the sand about the future. My husband's first reaction when our daughter was diagnosed with DS was "oh no! we'll have a child living with us for the rest of our lives". While that doesn't bother me so much (she's so lovely I couldn't bear to part with her!), one day I may not be here for her and I do need to have that goal in mind of where will she be and what will she be doing when I'm gone. It's also a good reminder to me of others who are in this position and the worries they must be experiencing. I guess it's not necessarily all as rosey as I like to think?

Cas

The article showed a fairly good representation of what I think the real possabilities for our kids are. i know I've already wondered how best to ensure Patrick's future when Paul and I aren't around and ideally the best outcome is for him to live as independantly as possible but this will probably mean in some type of supported accom. There are different models in America but I'm not sure about here. I read where one family had their son and a friend of his with a disability living together somewhere they had organised and a worker came in to check on them daily and assist where needed. I'd hope that as a group local families might be able to organise our own small group homes rather than rely on govt. ones. (There are not enough now and the one's I know of have about 5-6 residents with different disabilities. I forget what the waiting list is but remember a figure of about 200 and I'm sure it will not get shorter in a hurry).
This takes money though so that is something Paul and I work towards with all our decisions. We also personally don't want Rebecca to feel she has to be responsible for Patrick. Whatever course her life takes she needs to be free to make her life the way she wants it to be.
As always, we hope for the best and deal with what we get, Coral