CHARGE RE: The Story Of 's Home, part 1

February 16, 2007

Hi,

Just wanted begin the story for you guys on the development of

's home.

As I have stated before our County MHMR agency was less than

helpful in adressing any of 's needs once he graduated from high

school.

I sought out advocate groups who pointed me in the right directions

in getting answers.

I became involved in the PA Waiting List Campaign started by the

organization Vision for Equality. I meet many people in the working

fields of MR and advocacy though the Waiting List Campaign. One of

those people was Bill (now retired) from the Federal Department

of CMS (Center for Medicare and Medicaid Services) formally known as

HICFA. He was the Federal agent for CMS services here in PA. This man

helped me with more information and support than anyone I meet

working in the MHMR field. This information is of upmost importance

for anyone starting down the road to community living. Don't be

afraid or hesitant to tap into your state and federal MR system when

you hit roadblocks at the County level. Currently there is a mass

change over within most States. Givning parents the right to choice

and variety of choice when before there was none.

My county agency showed me in the very beginning that they didn't

have a clue how to deal with 's issues of deafness. They wanted

me to go away with all my demands and questioning. They tried to

convince me they had no other deaf clients needing community living.

The first Assisted Living home they sent me to put me in touch with

two other people who were deaf and needed a home. There was a

casemanager from OVR,() who was deaf working with those two,

(Debra and ) She was also trying to get a deaf group home

started. She and I joined forces. We came up with the idea of

starting a group consisting of mainly people who were deaf. These

were people who had interest in working in a home as staff, and

others who were deaf that simply wanted to support the idea of a home

for deaf. (Though most people in our group were deaf we also had a

number of hearing people who worked as certified interpreters. We set

a goal of becoming a provider agency ourselves. if we suceeded,

, Debra and would be part of the organization and owners

of their own home. Quite a lofty goal. We had regular meetings and

became incorperated at the state level. In the meantime I was working

at securing waiver for , Debra and . PP & A had become

involved with Debra's and 's situation. had spina bifada,

mild MR, and hard of hearing, Debra had mild MR, deafness, degenetive

nerve desiease,and a severely clubbed foot(which was never repaired).

She and were both in wheelchairs. Neither one of them had

family involvement. I surmise that is why the agancies were able to

put them into Assisted Living. We were able to get into a

residental program for Spina Bifada while we worked on getting a

home. Debra was not so forunate. She had to remain in the Assisted

Living home. Henry, and I became her family and advocates. At

one point Debra was removed from the Assisted Living due to

acusations of abuse. The county agency asked our organzation to house

her with menbers until they could find housing for her. I ended up

with Debra here at home with me because a casemanager from MR agency

(who was suppose to sucure a home for her) told me to just drop her

off at a red cross shelter if our members couldn't keep her. (Not

kidding!!) Well I was on phone to State Office of MR next morning.

Next day they moved Debra into a hospital for evaluation. From there

she went into a nursing home from which we got her moved into a

temporary group home until our deaf home was opened. Though

unforunate for Debra, this all gave me what I needed to push and

succeed in getting Waive money for what would eventually be four deaf

adults. Our fourth young man's name is Greg. His mother contacted me

from out of state. Their family was moving back to the area and were

looking for comminity living for Greg. He is MR, deaf, and autistic

with Island Suevant tendencies. This wonderful young man can solve a

rubics cube in under 2 minutes. Draws tractor tailers trucks that

resmeble machanical drawings. He only wants to draw trucks.

I have to let you know that has since moved on to living with

support in an apartment by himself. Their were some personality

problems between him and the other 3. came to the choice that

he would enjoy living alone with staff. We supported him in that

choice and he is now happily living in an apartment. He lived in our

home for over 3 years.

I will be giving you guys part two at a future date. There's allot

more to tell but I have housework needing to be done. LOL

mom to (31)

February 17, 2007

wow now i just hope martha is out there reading this in fact pam would u

mind thinking we should fwd it to her LOL

>

> Hi,

> Just wanted begin the story for you guys on the development of

> 's home.

>

> As I have stated before our County MHMR agency was less than

> helpful in adressing any of 's needs once he graduated from high

> school.

> I sought out advocate groups who pointed me in the right directions

> in getting answers.

>

> I became involved in the PA Waiting List Campaign started by the

> organization Vision for Equality. I meet many people in the working

> fields of MR and advocacy though the Waiting List Campaign. One of

> those people was Bill (now retired) from the Federal Department

> of CMS (Center for Medicare and Medicaid Services) formally known as

> HICFA. He was the Federal agent for CMS services here in PA. This man

> helped me with more information and support than anyone I meet

> working in the MHMR field. This information is of upmost importance

> for anyone starting down the road to community living. Don't be

> afraid or hesitant to tap into your state and federal MR system when

> you hit roadblocks at the County level. Currently there is a mass

> change over within most States. Givning parents the right to choice

> and variety of choice when before there was none.

>

> My county agency showed me in the very beginning that they didn't

> have a clue how to deal with 's issues of deafness. They wanted

> me to go away with all my demands and questioning. They tried to

> convince me they had no other deaf clients needing community living.

> The first Assisted Living home they sent me to put me in touch with

> two other people who were deaf and needed a home. There was a

> casemanager from OVR,() who was deaf working with those two,

> (Debra and ) She was also trying to get a deaf group home

> started. She and I joined forces. We came up with the idea of

> starting a group consisting of mainly people who were deaf. These

> were people who had interest in working in a home as staff, and

> others who were deaf that simply wanted to support the idea of a home

> for deaf. (Though most people in our group were deaf we also had a

> number of hearing people who worked as certified interpreters. We set

> a goal of becoming a provider agency ourselves. if we suceeded,

> , Debra and would be part of the organization and owners

> of their own home. Quite a lofty goal. We had regular meetings and

> became incorperated at the state level. In the meantime I was working

> at securing waiver for , Debra and . PP & A had become

> involved with Debra's and 's situation. had spina bifada,

> mild MR, and hard of hearing, Debra had mild MR, deafness, degenetive

> nerve desiease,and a severely clubbed foot(which was never repaired).

> She and were both in wheelchairs. Neither one of them had

> family involvement. I surmise that is why the agancies were able to

> put them into Assisted Living. We were able to get into a

> residental program for Spina Bifada while we worked on getting a

> home. Debra was not so forunate. She had to remain in the Assisted

> Living home. Henry, and I became her family and advocates. At

> one point Debra was removed from the Assisted Living due to

> acusations of abuse. The county agency asked our organzation to house

> her with menbers until they could find housing for her. I ended up

> with Debra here at home with me because a casemanager from MR agency

> (who was suppose to sucure a home for her) told me to just drop her

> off at a red cross shelter if our members couldn't keep her. (Not

> kidding!!) Well I was on phone to State Office of MR next morning.

> Next day they moved Debra into a hospital for evaluation. From there

> she went into a nursing home from which we got her moved into a

> temporary group home until our deaf home was opened. Though

> unforunate for Debra, this all gave me what I needed to push and

> succeed in getting Waive money for what would eventually be four deaf

> adults. Our fourth young man's name is Greg. His mother contacted me

> from out of state. Their family was moving back to the area and were

> looking for comminity living for Greg. He is MR, deaf, and autistic

> with Island Suevant tendencies. This wonderful young man can solve a

> rubics cube in under 2 minutes. Draws tractor tailers trucks that

> resmeble machanical drawings. He only wants to draw trucks.

>

> I have to let you know that has since moved on to living with

> support in an apartment by himself. Their were some personality

> problems between him and the other 3. came to the choice that

> he would enjoy living alone with staff. We supported him in that

> choice and he is now happily living in an apartment. He lived in our

> home for over 3 years.

>

> I will be giving you guys part two at a future date. There's allot

> more to tell but I have housework needing to be done. LOL

>

> mom to (31)

>

February 17, 2007

Ellen,

you are very thougthful-I think Martha is on, but I am forwarding to her offline

address.

thank you.

pam

Re: CHARGE RE: The Story Of 's Home, part 1