Yes, Greg you sure came up with a lot of super ideas but there are so many
of us who have to pay someone around the clock and then a fill-in every
time she goes to see her boyfriend which is in the contract but she also
needs a break. I need a break from quadriplegic problems and I was so
fortunate to have my husband and my family but now? I need:
- To be able to stay in my own home where by now I do not even have a home
but an apartment that is nice but I have no backyard and my view is the
backyard of a plaza which is extremely noisy. To do this is my caregiver
moves on I would have to hire someone around the clock and they won at
least $12 an hour now and usually more. I know many carers who get $20 or
more an hour to be hired by wealthy families to be a glorified babysitter
and nothing like the care that we need. Those high-level quads like myself
anyway.
- To be able to afford my bills and medical bills. I am still writing out
20% of what I have to pay with my insurance for that 3 week hospital stay
and each and every doctor that saw me as well as each and every diagnostic
test and so much more. I could have done without that!
- To be able to afford a house cleaner because caregivers can't do
everything.
- To be able to afford the co-pays on my medications. They get quite
expensive if you do not qualify for Medicaid sources.
- Utilities, food, gasoline and everything that I am paying for now.
- I would love and Environmental Control Unit and a more elaborate smart
phone and other technologies available in these days for quadriplegics.
- Not have to worry about how soon a power wheelchair representative will
get to your home for repairs or you are stuck in bed. I would purchase 2
power wheelchairs that fit my needs as well as wheelchair cushions.
- I agree with Greg with something like an apartment complex or community
living were several GOOD caregiver that can be TRUSTED with each and every
one of us. I am very fortunate to have found a live-in caregiver I have
now gets my prescriptions, writes out my checks for bills and does all my
care. A true angel.
Even right after my husband and I were married we hired someone (1998) who
we checked out with my cousin who was a local cop and he was supposedly
"clean" only for him to steal so much from us and neither one of us had
ever been stolen from before. He got away with silver bars () that my
husband's father had given him along with a huge "large coins" collection
and jewelry which we could never get back. Not only expensive but
sentimental. He went to the local pawn shop as quickly as he could to sell
all this stuff. My husband was at work while he was slowly and sneakily
getting away with this. We called the cops and they gave us all kinds of
excuses. Thankfully insurance covered a lot of things that we had just
moved into a very nice rental home and let him into our basement to unpack
dozens and dozens and dozens of boxes from when my husband moved from
Houston to New York so we have no idea all that he got away with there.
Back in 2007 I actually approached an author who is very familiar with
quadriplegics, service dogs and such to start such an apartment complex or
community with individual apartments but he wrote back to me saying that if
he were younger he might take on such an elaborate idea but he was 60 years
old and already started a smaller foundation but closer to home and that is
all him and his wife could do.
There actually is an apartment complex for those people with disabilities
but if you require the type of care that I do... it would be unaffordable.
I can't remember the name of it but it is in Pennsylvania. Wait I
think I found it. I actually looked into it when my family wanted me to
move on and I had nowhere to go but they were not very nice and if you
wanted to stay in the complex you got nothing bigger than a dorm and only
got to help every once in a while so it is more conducive to a paraplegic.
Other individual apartments outside the complex costs $.
https://www.regandevelopment.com/new-york-new-jersey-real-estate-developers/inglis-gardens-belmont/
I am sure I can come up with a lot more but need to go lay down.
~Lori
On Thu, Oct 18, 2018 at 6:17 PM Danny Hearn wrote:
> Wow, those are good Idea's you came up with Greg. So many of us Quads also
> can't even afford the disability equipment that we need either.And Also
> like Lori said, if we lose our caregivers we can be in a world of trouble.
> So an apartment for Quads would be a good Idea, perhaps even several
> locations of them . ( Dan H*** )
>
>
> On Thursday, October 18, 2018 7:59 PM, Greg wrote:
>
>
> I can't believe the Lotto is at almost a Billion.
> I assume most of us would donate a lot to something related to SCI.
>
> I'd do some to research, but then something for those now living with a
> SCI. But what?
>
> The whole billion can't help everyone. So what do you do. Help lots a
> little, or help a little a lot?
>
> Start a nation