Re: What is a day like

[Guest guest]

Hi Sara,

Thank you for writing with so many details.  Did you move to GA because of the

waiver situation?  Our waiver situation in TN seems hopeless. We are on a small

self-determination waiver that pays for some personal assisstance and respite,

but the big waiver is not automatic just based on age of participant or

parents.  It would take an " act of God " to get him on it. 

What happens when finishes school and he wants to get married or otherwise

move on with his life? Is the state or some agency involved to keep

this situation going or do you have to find someone all over again. 

My children are all younger than PJ and I would like something in place where

they can be sibs and not grow up worrying that they have to be caretakers-

especially since there is another sib that will not be independent. 

Gotta go.  I'll write more later

Thanks,  

________________________________

To:

Sent: Saturday, December 27, 2008 11:49:52 AM

Subject: What is a day like

First a question: have you filed for social security for your son? Now

that he is 18, he qaulifies for social security and could qualify for food

stamps as well.

Elie met his friend at the sheltered workshop. From day one, we expressed

the idea that we were looking for a host family or life sharing partner for

Elie as he would not be happy in a group situation. HE does not other

people making plans for him or making noise around him or eating with him -

unless it is his adult friends!!!!.

One of the staff, a young man of 24 who had worked at the center since he

was a teen, approached us about Him renting/buying a house for himself and

Elie if we could get a residential waiver. We had looked into this after

ruling out INNISFREE (we are from VA) and then CAMPHILL(we lived down the

road from there for a time) . As you say - both those places will take

social security but get no other funds and it costs about $3,000/month -

money we do not have.

Anyway - found a wonderful 2 yo 3 br, 2 bath house in Ellijay - a

mountain little town on the way to Chattanooga. HE is in a lease/purchase

agreement and gets paid $100/day for caring for Elie. He also gets a

portion of Elie's SS and Elie's food stamps (which Elie uses to learn

shopping skills buying food for the house and learning to prepare food).

Then the support person gets about $800/month for working with Elie in the

community for about 20 hours a week. During that time, is going to

school to finish his degree. All of this is under the MEdicaid waiver, Home

and community services.

Elie is now part of the " gang of guys " who grew up together in the

mountains. But he doesn't live with them. , ELie and another firend of

's live at the house. HE goes out to eat with them (his favorite

thing), goes bowling and " girl watching " with them. He rides the golf cart

when they play golf (one of the friends is a semi-pro) and then sits on the

TEE - the guys say he is better than a flag on the tee. reports that

Elie (or L.E.. as the guys style it) is a girl magnet. Elie will walk up to

a girl who strikes his attention. Then his first thing is to say - " What's

your name? Want a hug?. The guys did not tell him that. HE always has

said that to strangers. But now he is focusing on interesting girls. Then

the guys have an opening to make an acquaintence. OR as says - now the

girls whom he has known all his life are paying attention to him because of

Elie!

He even plays a new game called ELIE POKER - they play poker with Elie

walking around the table calling out the cards! Rules have been amended to

the players trying to remember what Elie calls out.

The important things - Elie is living a fulfilling life. HE is very happy.

He likes to visit us and for us to visit him - but he makes it clear that it

is only a visit.

Oh yeah - the LR at his new house has a putting green and a bell ringing

basketball shooting maching - Elie LOVES shooting baskets on that machine.

Frat house!!!

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

See below: IN RED

On Mon, Dec 29, 2008 at 11:50 AM, Clarity wrote:

> Hi Sara,

> Thank you for writing with so many details. Did you move to GA because of

> the waiver situation?We moved despite knowing that the GA situation would

> be difficult. We joined the GA PARENT NETWORK and the GA CHILDRENSNETWORK

> both at yahoogroups for more incite. Truth to be told, we actually got

> really good services here as we have needed them Our waiver situation in

> TN seems hopeless. We are on a small self-determination waiver that pays for

> some personal assisstance and respite, but the big waiver is not automatic

> just based on age of participant or parents. It would take an " act of God "

> to get him on it.We had 20,200 (approx) in the self determination waiver

> in PA. which we used for respite and habilitation (get this child OUT of

> the house).

>

> What happens when finishes school and he wants to get married or

> otherwise move on with his life? I can't be sure, but grew up with a

> man living in his family as part of the family. His friends (male and

> female) all accept Elie as 's brother and part of their friend group.

> However, we have made aware that we will review the situation after

> one year IF HE WANTS out. His thinking - at 24- is that this is a life

> choice. Is the state or some agency involved to keep this situation

> going or do you have to find someone all over again. At this point, Elie

> has a support coordinator from one agency AND the agency which hired

> and thru whom the Waiver oney goes . We have other options, but are really

> happy ( since September).

>

We found the system here in GA to work - if we took the time to learn who

what where. We quickly learned the county, regional, state was much

different from what we were used to, but that we could find the help which

we needed. I know that is NOT tru across the state. But we are in a rural

area where services are more limited, but help seems to be bertter.

As to what does he do all day: for the first year after h/s we tried a day

program where he was picked up at 7Am and came home about 3:30. At the day

program, he had daily trining in widget jobs - all of which he learned and

then refused to do again,. So each new task, he woould learn 1:1, and then

he would quit when the 1:1 stopped. Then he would very happily sit and

watch others, go eat his packed lunch, go out and either watch or shoot

baskets, go on weekly outings to the park, or town, bowling, or out to eat.

But - he had to have hamburger, FF - no matter what everyone else voted on

he always needed to have his FIX - then he would take the bag and go to what

ever place was chosen to eat. At the end - he became sad and refused to go,

started saying that he didn't want to see certain people. There had been a

change in personnel and I think he was feeling threatned (or someone

actually tried to frighten him).

Now he has a day support person for 6 hours, 3 days a week. HE goes to 2

nursing homes to meet and greet and help with recreation. HE generally

lasts 2 hours. Then he eats his packed lucnch in a park if it is nioce or

in the car. Then they go walking - at Walmart on bad days, in the park on

good days. Elie needs to walk to strech his achilles tendons and for

health. They also go grocery shopping, using Elie's debit card. We are

looking for other work opportunities, but I have removed him from ANY pay

positions right now because of the horrific economy in our mts. HE can live

without a salary. I would like him to work at the community thrift store,

helping to move items and we are working on that. Heavy lifiting is very

calming for him.

On ddays he does not go out with day support, he helps clean house, do

laundry, and plays Wii Sport or

Arcade basketball. HE also goes out with the " guys " . They eat out alot!!

he is very happy right now.

>

>

> My children are all younger than PJ and I would like something in place

> where they can be sibs and not grow up worrying that they have to be

> caretakers- especially since there is another sib that will not be

> independent.

>

> Gotta go. I'll write more later

> Thanks,

>

> ________________________________

> From: Sara Cohen <pastmidvale@... <pastmidvale%40gmail.com>>

> To:

> Sent: Saturday, December 27, 2008 11:49:52 AM

> Subject: What is a day like

>

>

> First a question: have you filed for social security for your son? Now

> that he is 18, he qaulifies for social security and could qualify for food

> stamps as well.

>

> Elie met his friend at the sheltered workshop. From day one, we expressed

> the idea that we were looking for a host family or life sharing partner for

> Elie as he would not be happy in a group situation. HE does not other

> people making plans for him or making noise around him or eating with him -

> unless it is his adult friends!!!!.

>

> One of the staff, a young man of 24 who had worked at the center since he

> was a teen, approached us about Him renting/buying a house for himself and

> Elie if we could get a residential waiver. We had looked into this after

> ruling out INNISFREE (we are from VA) and then CAMPHILL(we lived down the

> road from there for a time) . As you say - both those places will take

> social security but get no other funds and it costs about $3,000/month -

> money we do not have.

>

> Anyway - found a wonderful 2 yo 3 br, 2 bath house in Ellijay - a

> mountain little town on the way to Chattanooga. HE is in a lease/purchase

> agreement and gets paid $100/day for caring for Elie. He also gets a

> portion of Elie's SS and Elie's food stamps (which Elie uses to learn

> shopping skills buying food for the house and learning to prepare food).

> Then the support person gets about $800/month for working with Elie in the

> community for about 20 hours a week. During that time, is going to

> school to finish his degree. All of this is under the MEdicaid waiver, Home

> and community services.

>

> Elie is now part of the " gang of guys " who grew up together in the

> mountains. But he doesn't live with them. , ELie and another firend of

> 's live at the house. HE goes out to eat with them (his favorite

> thing), goes bowling and " girl watching " with them. He rides the golf cart

> when they play golf (one of the friends is a semi-pro) and then sits on the

> TEE - the guys say he is better than a flag on the tee. reports that

> Elie (or L.E.. as the guys style it) is a girl magnet. Elie will walk up to

> a girl who strikes his attention. Then his first thing is to say - " What's

> your name? Want a hug?. The guys did not tell him that. HE always has

> said that to strangers. But now he is focusing on interesting girls. Then

> the guys have an opening to make an acquaintence. OR as says - now

> the

> girls whom he has known all his life are paying attention to him because of

> Elie!

>

> He even plays a new game called ELIE POKER - they play poker with Elie

> walking around the table calling out the cards! Rules have been amended to

> the players trying to remember what Elie calls out.

>

> The important things - Elie is living a fulfilling life. HE is very happy.

> He likes to visit us and for us to visit him - but he makes it clear that

> it

> is only a visit.

>

> Oh yeah - the LR at his new house has a putting green and a bell ringing

> basketball shooting maching - Elie LOVES shooting baskets on that machine.

> Frat house!!!

>

> >

> >

>

> --

> Sara - Life is a journey- we choose the path.

>

>