Joe Shapiro

[Guest guest]

I met Joe Shapiro when he was a speaker at the PArtners in Policy Making

Course that I took. This was as his book was coming into print.

He says it right - it is a civil rights matter. And self-determination is

the answer. With waiver oney available, a person whouls be able to use that

money in a self-determined way.

Let me tell you what happens thoguh when unwatched bureaucrats get hold of

something simple:

There is a family in PA who has 3 young people with the same genetic issue

which causes behavior issues and mental retardation. The cause was ot

figured out until after the 3rd child was born - there is a 4th child who is

" typical " . The family wants their family to stay to gether in a purpose

built home for the 3 young people with staff. The county has an issue in

that the parents want to build the home and have incorpraated as an agency

to act as brokers in the hiring, training and supervising staff. There is

no competing agency in the county in which they live to provide these

services. The county has retaliated over the last 6 years by: refusing to

pay the agency, approving payments after 6 months of " negotiating " , refused

requests from both the state and the feds to explain themselves, the county

has published private family data in the local newspapers, using names, to

intimidate the family.

Now why do I go into such detail?? Because the money (and the issue is

always the money) that comes from the feds has a few strings on it to the

state in how it may be used. But once the state gives it to the the county,

there are guidelines, but not statues, not regulations and thus the county

can play not only politics, but can misuse the funds without any major

issues. Meanwhile, the family who has need of extensive services for their

young people, are forced to use retirement money, go in debt and often must

fire trained staff and work endless hours beyond normal family interactions

to meet these 3 peoples major needs.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: Medicaid Waiver -- history lesson: Nick Dupree's

>Crusade

>Date: Sun, 13 Aug 2006 12:41:08 -0700 (PDT)

>

>

>

>dmartin336@... wrote: Sara you said: Medicaid in most states

>will not pay for DENTAL care after

>age 21!!

>

>

> you may recall the rallying cry of Nick's Crusade--here's a bit of

>history for you all

>

>_INCLUSION DAILY EXPRESS -- Nick Dupree's Crusade_

>(http://www.inclusiondaily.com/news/community/dupree.htm)

>_Accessible Society E-Letter 2/4/2003_

>(http://www.accessiblesociety.org/e_letters/eletter020403.html)

>_NPR : A Medicaid Victory_

>(http://www.npr.org/templates/story/story.php?storyId=974391)

>

>Nick today:

>_User:NickDupree - Wikipedia, the free encyclopedia_

>(http://en.wikipedia.org/wiki/User:NickDupree)

>_Game|Life_ (http://blog.wired.com/games/index.blog?entry_id=1308320)

>

>Donna ez

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>