Re: Living in Florida...Long

December 7, 2008

Honestly, that has nothing to do with the level of services the state offers to

its disabled residents. In fact, Disney World is almost like a separate entity

within the state, despite a vast majority of the state relying so heavily upon

the tourism it brings each year. Florida claims that it has no money because so

many of the residents never pay state taxes (due to a tremendous number of

retirees, etc.), but it is yet another state that greatly mismanages its

finances and opts to dedicate a vast amount of dollars to in-home care provided

by ridiculously expensive agencies as well as nursing home care.

My doctors began recommending that I move to a warmer climate about three years

ago, and we had initially tried to move west (we’re from the Chicago area). Our

state of choice, northern Arizona, had minimal services that would be terminated

upon my husband finding a job. In learning that, we temporarily put off the

move, hoping to relocate to southern California, but soon realized that we could

never afford to live there (I refused to move my kids from a decent sized home

with a nice backyard to what would feel like a sardine can). We returned to

Illinois, and talked over our options with my ORS Home Services Counselor. She

informed me that so long as I lived in Illinois for a minimum of six months out

of the year, my services would continue. Not wanting to drive nearly 4000 miles

twice a year, we chose to wait and look into closer alternatives.

My doctors’ advice became more persistent over the years, and all warned that if

I spent another winter in the bitter cold of the Midwest, it would be the death

of me. I gave in, and decided to move our entire family to Florida; however, I

made the mistake of advising my new ORS Counselor of my plans. She refused to

make such an allowance and threatened to close my case if I left the state for

more than a three week period. I left regardless, hoping to simply transfer

services to Florida. Oh my God, it has been a complete nightmare!

Florida has NO services; the waiting list for in-home personal care is at least

two years and provided only through nursing agencies. Regardless of the severity

of my condition, I was told that I would be extremely lucky to receive ten hours

of care per week (I currently get 113 hours in Illinois to schedule help). I

tried contacting the various advocacy groups, but made zero progress (heck, the

local CIL, who swore to get some answers, would never even return my calls). I

spoke to people all the way up to the Governor’s Office, and got virtually no

assistance. I actually had one woman at DFS (the division that provides in-home

care funding) tell me to go live in a nursing home, that my “husband” and kids

could visit me there, when I questioned how disabled individuals were expected

survive in the state. Let me tell you, it made me feel really welcome!

We weighed our options: my “husband” thought about getting a job outside the

home (he is one of my PAs), but we were still faced with the reality of nobody

being available to provide my daily care; I incessantly searched for work, but

the economy and existing biases have been immensely playing against me. So, for

the time being, we are in the Midwest, but I have been working with a variety of

connections made in Florida and will be returning as a permanent resident in the

not too distant future (thank heavens because it is freaking cold in Illinois).

I have been offered a job in central Florida and am currently waiting for the

office to be built and the position to begin. Furthermore, in the meantime, I am

working on setting up my own nonprofit organization, and will establish it with

a Florida mailing address. I also hope to sue the state of Illinois to be

granted approval to reside part-time in another state without losing my

benefits, but have

thus far been unsuccessful in finding a lawyer willing to take on such a task.

Any advice from others would be greatly appreciated.

Should you decide to move, make the decision wisely and be prepared to fight.

Florida is a beautiful state with amazing weather, despite the potential for

hurricanes. We vacationed in Kissimmee for two weeks last Christmas, and it was

awesome to be swimming outdoors on Christmas morning. I cannot wait to have that

again…

Good luck,

Amy M.

Really? I heard Disneyworld and all that was more accessible than it is here in

California!

Kemp

Director, OurGV Rewards

From: Behalf of Kerstetter

Sent: Sunday, December 07, 2008 5:29 PM

Subject: Re: Living in Florida

I live in Florida. It's horrible here except for the weather.

I hate to talk you out of your decision, so let others answer first. But really,

if you're disabled, there's virtually nothing here for you. It's ridiculous.

---On Sun, 12/7/08, pidgie508 <pidgie508@...> wrote:

From: pidgie508 <pidgie508@...>

Subject: Living in Florida

Date: Sunday, December 7, 2008, 7:57 PM

I would like to know how many of you live in Florida? I would like to move there

because the weather is healthier for me but I have heard that they have

virtually no pca program to speak of.

Regards,

Patti

www.youravon.com/patriciapanzarino

December 8, 2008

Florida sounds a lot like Texas. Good weather most of the time, horrible

support for people with disabilities!

Austin, Texas

" May I become at all times, both now and forever

A protector for those without protection

A guide for those who have lost their way

A ship for those with oceans to cross

A bridge for those with rivers to cross

A sanctuary for those in danger

A lamp for those without light

A place of refuge for those who lack shelter

And a servant to all in need. "

The Dalai Lama, Insight from the Dalai Lama

Messenger: kh78748

Skype: kh78748

From: pidgie508 <pidgie508@...>

Subject: Living in Florida

Date: Sunday, December 7, 2008, 7:57 PM

I would like to know how many of you live in Florida? I would like to move

there because the weather is healthier for me but I have heard that they have

virtually no pca program to speak of.

Regards,

Patti

www.youravon.com/patriciapanzarino

December 8, 2008

Welcome to the reasons I left Alabama in August and moved to New

York.... My mom could no longer do the care and the state will never

cover the gaps.

I only hope the new president will do something serious about long-term

care. The Southern states provide little to no supports for people with

disabilities.

Nick

Amy M. Marquez wrote:

> Honestly, that has nothing to do with the level of services the state offers

to its disabled residents. In fact, Disney World is almost like a separate

entity within the state, despite a vast majority of the state relying so heavily

upon the tourism it brings each year. Florida claims that it has no money

because so many of the residents never pay state taxes (due to a tremendous

number of retirees, etc.), but it is yet another state that greatly mismanages

its finances and opts to dedicate a vast amount of dollars to in-home care

provided by ridiculously expensive agencies as well as nursing home care.

> My doctors began recommending that I move to a warmer climate about three

years ago, and we had initially tried to move west (we’re from the Chicago

area). Our state of choice, northern Arizona, had minimal services that would be

terminated upon my husband finding a job. In learning that, we temporarily put

off the move, hoping to relocate to southern California, but soon realized that

we could never afford to live there (I refused to move my kids from a decent

sized home with a nice backyard to what would feel like a sardine can). We

returned to Illinois, and talked over our options with my ORS Home Services

Counselor. She informed me that so long as I lived in Illinois for a minimum of

six months out of the year, my services would continue. Not wanting to drive

nearly 4000 miles twice a year, we chose to wait and look into closer

alternatives.

> My doctors’ advice became more persistent over the years, and all warned that

if I spent another winter in the bitter cold of the Midwest, it would be the

death of me. I gave in, and decided to move our entire family to Florida;

however, I made the mistake of advising my new ORS Counselor of my plans. She

refused to make such an allowance and threatened to close my case if I left the

state for more than a three week period. I left regardless, hoping to simply

transfer services to Florida. Oh my God, it has been a complete nightmare!

> Florida has NO services; the waiting list for in-home personal care is at

least two years and provided only through nursing agencies. Regardless of the

severity of my condition, I was told that I would be extremely lucky to receive

ten hours of care per week (I currently get 113 hours in Illinois to schedule

help). I tried contacting the various advocacy groups, but made zero progress

(heck, the local CIL, who swore to get some answers, would never even return my

calls). I spoke to people all the way up to the Governor’s Office, and got

virtually no assistance. I actually had one woman at DFS (the division that

provides in-home care funding) tell me to go live in a nursing home, that my

“husband” and kids could visit me there, when I questioned how disabled

individuals were expected survive in the state. Let me tell you, it made me feel

really welcome!

> We weighed our options: my “husband” thought about getting a job outside the