Hi Rita-- this is indeed surprising. I think that a reasonable solution
for the "disabled community" as a whole will include various
options---people's needs differ as do resources. The concept of group
homes for PWPs, for example, has been discussed on PIEN numerous times, and
we know they exist in some other countries. These could provide safe care
for several persons, and dilute the cost per person. They would NOT be
nursing homes , but truly "assisted living" and would meet the needs of
someone like Ivan (despite the emotional trauma of having to give up his
"PDadapted" house.) Sadly, nobody seems to be implementing this idea in
many places in the USA.!
>Reading Linda Herman's posting this am re: community based care for
>disability ...grants available to some states to implement these programs in
>the $5-8 million range set me to doing some figuring and thinking.
>
>Using figures from various postings related to Ivan's situation in
>Maine....PCA help during the night. I used Ivan's request/comments because
>they have been discussed openly on the list...and it gave me a basis from
>which to start....a "what if" scenario. ...I went to several Maine websites
>re home care and found that PCA (personal care asst) was basically not a
>skilled medical professional, but for the individual who requires "social
>needs and individual can assume responsibility for his/her own care"....So I
>interpret this as being.....not demented, no lifting of a patient, no IVs, no
>catheters, no injections, no wound care....a situation that many individuals
>cope with on a daily basis. (This is as opposed to skilled nursing care....at
>a MUCH higher price tag).
>
>The general figure being discussed seems to have been hopefully $8.50 per
>hour for night time care...for reliable employee.....so I did the math....
>$8.50/hr for 8 hrs.....$68.00 per night ......add benefits and the employer
>(state?) pays a minimum of $85 per night for night time care for one
>individual. extending that further......we go to $595 per
>week........$30,940 per year PER patient for NIGHT time care at home.
>
>Thinking in terms of the grants at $5-8 million.....per state............That
>translates out to 32 individuals receiving night time PCA for each $1 million
>per state. That is a bill for only night time care.......no daytime hours
>are covered in my figures.
>
>Quite honestly....I was shocked at this figure! I do think we really need to
>look at the pricetags attached to the requests that we make. The above
>figures do not cover expenses of managing a program for PCA's.....hiring,
>supervising, scheduling....etc...I don't know what those expenses are...but
>the service does not come free. If we extend that coverage to 16 hours per
>day.....we are servicing only 16 persons for $1 million dollars......and they
>still have 8 hours a day not covered with assistance.....and I still have no
>figures included for someone to "manage the programs".
>
>As Hilary commented, there is a lot of lobbying effort going on for the
>disabled community....and we (PWP) are a very small segment of that
>community......the disabled needing care do range from newborn to
>centennarians......many requiring much more intense (medically necessary) or
>constant (thinking Alzheimer's and profound dementia's).....care than
>PWP's.
> It would be a great idea for us to present a joint effort in some of these
>programs. But I do find it frightening when viewing the overall picture,
>that nighttime coverage in the home could possibly cost $30,900 per
>individual per year.....(If we drop to $6.50 per hour...we are at almost
>$25,000/yr...and are covering 40 persons per year at night for $1,000,000.
>Or we are covering 20 persons for 16 hours per day. How many people do you
>estimate qualify for this type of care in your city? state?).
>
>I would like to have care available to individuals so that we could remain in
>our homes. Our family has had both negative and very positive nursing home
>experiences in the past four years....I know that both exist.
>
>Are our options better addressed with co habitation arrangement....where a
>couple of people with similar/compatible needs share a residence? Group
>homes?? If we irradicated the term "institutional care" would we be more
>accepting?? College dorms are mass living experiences where people can
>support/care.....isn't that what some of the assisted living experiences
>provide? Should we be asking for more support for these communities?
>
>I am asking myself questions out loud. I would appreciate comments. I don't
>know where I would throw my support on these issues at this time. What are
>the alternatives? How does the price tag compare???
>
>Rita Weeks 56/11
>
Camilla Flintermann, <[log in to unmask]>
On PDWebring at : http://members.tripod.lycos.nl/genugten/flinterm.htm
" Knowing when to insist, and when to let be,
is, perhaps, a lifetime learning experience ."
--Mary McCurry
