Re: Re: New York (was Living in Florida...Long)

[Guest guest]

Just my $.2, but NY winters absolutely suck. I wasn't outside for more

than five minutes today before my hands started hurting, and it wasn't

even THAT cold (31). I can't take the kids alone anymore because we'd

walk everywhere, and snow is so not conducive to wheelchair usage.

Yeah, the PCA program is decent, but losing my independence for 7+

months just isn't worth it anymore. =(

On Dec 17, 2008, at 12:32 AM, Amy M. Marquez wrote:

>

>

> Hey Amy,

>

> Sorry for the delay in responding; things have been just crazy here

> and, on top of it all, I've been fighting something (not exactly

> sure what) that is kicking me in the butt the last few days. I'm not

> entirely sick, but am definitely not feeling myself. Thanks for the

> response, I tend to enjoy your lengthy and thought out replies even

> though we don't always see eye-to-eye.

>

> Unfortunately, I am pretty limited as to where I can consider moving

> mainly due to the vast climate differences that exist throughout the

> United States. Over the years, it has become increasingly more

> difficult for me to function in temperatures below 55 degrees, and

> am at my prime in weather above 65 degrees. In trying to remain as

> healthy and active as able for myself and my kids, I need to avoid

> areas that sustain long, harsh winters and endure significant

> amounts of snow and ice. While New York is far better than Illinois

> in providing services and experiences less severe winters, it's just

> not enough. We had the opportunity to travel through NY on the way

> back from the FSMA Conference this past June (we went to visit

> Niagara Falls), and found the state to be absolutely beautiful.

> However, by the time evening rolled around, it became downright

> chilly...and this was towards the end of June. I can't imagine what

> a winter would be like up there (though

> Steve used to live in Maine and has somewhat of an understanding)

>

> So, while I'd love to have the chance to " hang out " with another

> SMAer named Amy, I just cannot move to NY or anywhere in that

> general area. My days of playing roulette with my health and being

> couped up in the house for several months throughout the winter are

> over. I simply need to find a solution that benefits myself as well

> as those who will come after me, but my ideas appear to be bigger

> than I ever imagined and will definitely require the help of many

> others in similar situations and circumstances.

>

> Luckily, we had the chance to travel to Florida numerous times over

> recent years, and was initially shocked by the heat and humidity

> present over the summer months. However, I soon discovered that

> being surrounded by such extreme conditions really caused me to be

> far more in-tune with my body than ever before. It wasn't long until

> the weather became tolerable and not such a big deal. But what

> really sold me on the idea of moving to Florida were the winters; we

> spent the holidays last year and spring break this year in the

> Orlando area, and it was incredible! It was warm enough on Christmas

> Day that the girls were able to swim outdoors and, after talking to

> locals, we learned that it was actually a pretty rough winter for

> the state since coats were needed for about a week. Now that's a

> winter I can handle! It was just very nice for once, throughout the

> winter, to not be cold to the point of it being impossible to warm

> up; that bone chilling cold which

> doesn't leave until the summer thaw. More importantly, I was

> physically able to be outdoors in the midst of winter for great

> lengths of time, and my health never suffered in the least bit.

>

> If given a choice, I would not opt to spend the summer months in the

> south. Then again, when have the disabled, as a group, ever been

> given an option? It is getting late and I am worn out, so I'll be

> calling it a night. Thanks for your input and advice...

>

> Amy M.

>

> From: Amy <charmedcripchic@...>

> Subject: Re: Living in Florida...Long

>

> Date: Monday, December 8, 2008, 4:25 PM

>

> This post is such an important thing to share. State by state

> services are a total minefield.

>

> I too considered moving to Florida to be in a better climate and

> closer to relatives {that were still alive at the time}, but I ended

> up finding so many road blocks in services that would seriously put

> me in jeopordy of being ware housed in a nursing home.

>

> I had a health emergency while visiting Fla that also helped me

> discover how very little health professionals in fla knew anything

> about SMA.

>

> I had the same Fla ILC experiences. Their general philosophy is that

> independent living is only for folks less disabled than myself.

> Folks like me 'belong in nursing homes' I've been told by ILC

> directors. They treated it like some sick kind of civic duty to

> unburden my loved ones from care giving the rest of my adult life

> as 'doing the right thing and admitting myself into a home'

>

> The most people can get are homemakers of the agency's choice {not

> your choice} for a measly few hours a week.

>

> There is a " Cash and Counseling " pca program but it's funds a capped

> and it dose not have ear marked gov funding. So as an 'experimental

> program' the state can budget slash this pca program away at any

> given whim.

>

> Remember as well the same goes for independent living related jobs.

> The state budget can easilly reallocate IL or voc rehab funding away

> from these offices and use the money towards hurricane relief, frost

> bitten orange crops or senior citizen programs instead. With central

> florida's recent real estate collapse there are much greater

> forclosures than the norther states are dealing with. Last week more

> than one out of every four homes were being forclosured on {Boston is

> 1 in 10 homes at the momment}.

>

> If you are going to move to Fla year round at least visit during

> summer months and make sure the summer weather is okay for you. I

> had a lot of breathing issues from fla summer weather with mold and

> humidity.

> I think the better tactic would be to get your Illinois legislators

> to advocate {or connect you with a civil rights advocate} to get to

> the bottom of how many months residency is required and then winter

> in Fla.

>

> civil rights and liberties case you could get an advocate that wants

> to champion your cause as a crusade. Many law schools have groups of

> volunteer pro bono lawyers who are yearning to help an oppressed

> person win justice. {if you haven't already} start calling health

> law advocates, disability law, civil liberties groups and email head

> proffessors of law schools and tell them about your situation.

>

> I got some great help this way from energetic people who enjoyed

> sticking it to medicaid for trying to dictate how many times a day

> they'd allow for a pca to help me eat and pee. Another pro bona

> lawyer got the IRS off of my back for years when the IRS wanted to

> count my PCA payroll as my income {which also would've killed my

> services for SSI, food stamps, rent subsidy, etc}. Each of these

> situations didn't win any money from law suits but they did give me

> peace of mind , restored my services, and hopefully made the culprits

> think twice before screwing over another disabled person.

>

> Other things to think about- would you ever consider moving to

> another state that's warmer than Ill but not in the southern 'no

> services for disabled folks' zone?

>

> New York state has better PCA services than California or

> Massachusettes. It's not as warm as Fla but it is warmer than

> Chicago. {you'd also be a few hours from here if you ever wanted to

> hang out with another SMAer named Amy }

>

> I used to want to relocate to California but I'm now very glad I

> didn't because the smog fires smoke earthquakes and extremely high

> energy costs would've sunk me. The PCA system pays different rates

> depending on the county due from union actions {or inactions}.

> Medical is worse for covering things than my current Masshealth.

>

>

[Guest guest]

South Texas has very short & mild winters, excellent pca & rehab services,

and top notch medical services where doctors know about SMA. Both Austin & San

have great accessible transportation services, too.

Vicki

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

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cemailfooterNO82)

[Guest guest]

I am from N.Y. and left due to the winters.  My health improved greatly and so

did my social life when I moved to Texas.  I left and never looked back!

L

________________________________

From: Amy <blueyedaze@...>

Sent: Wednesday, December 17, 2008 12:02:46 AM

Subject: Re: Re: New York (was Living in Florida...Long)

Just my $.2, but NY winters absolutely suck. I wasn't outside for more

than five minutes today before my hands started hurting, and it wasn't

even THAT cold (31). I can't take the kids alone anymore because we'd

walk everywhere, and snow is so not conducive to wheelchair usage.

Yeah, the PCA program is decent, but losing my independence for 7+

months just isn't worth it anymore. =(

On Dec 17, 2008, at 12:32 AM, Amy M. Marquez wrote:

>

>

> Hey Amy,

>

> Sorry for the delay in responding; things have been just crazy here

> and, on top of it all, I've been fighting something (not exactly

> sure what) that is kicking me in the butt the last few days. I'm not

> entirely sick, but am definitely not feeling myself. Thanks for the

> response, I tend to enjoy your lengthy and thought out replies even

> though we don't always see eye-to-eye.

>

> Unfortunately, I am pretty limited as to where I can consider moving

> mainly due to the vast climate differences that exist throughout the

> United States. Over the years, it has become increasingly more

> difficult for me to function in temperatures below 55 degrees, and

> am at my prime in weather above 65 degrees. In trying to remain as

> healthy and active as able for myself and my kids, I need to avoid

> areas that sustain long, harsh winters and endure significant

> amounts of snow and ice. While New York is far better than Illinois

> in providing services and experiences less severe winters, it's just

> not enough. We had the opportunity to travel through NY on the way

> back from the FSMA Conference this past June (we went to visit

> Niagara Falls), and found the state to be absolutely beautiful.

> However, by the time evening rolled around, it became downright

> chilly...and this was towards the end of June. I can't imagine what

> a winter would be like up there (though

> Steve used to live in Maine and has somewhat of an understanding)

>

> So, while I'd love to have the chance to " hang out " with another

> SMAer named Amy, I just cannot move to NY or anywhere in that

> general area. My days of playing roulette with my health and being

> couped up in the house for several months throughout the winter are

> over. I simply need to find a solution that benefits myself as well

> as those who will come after me, but my ideas appear to be bigger

> than I ever imagined and will definitely require the help of many

> others in similar situations and circumstances.

>

> Luckily, we had the chance to travel to Florida numerous times over

> recent years, and was initially shocked by the heat and humidity

> present over the summer months. However, I soon discovered that

> being surrounded by such extreme conditions really caused me to be

> far more in-tune with my body than ever before. It wasn't long until

> the weather became tolerable and not such a big deal. But what

> really sold me on the idea of moving to Florida were the winters; we

> spent the holidays last year and spring break this year in the

> Orlando area, and it was incredible! It was warm enough on Christmas

> Day that the girls were able to swim outdoors and, after talking to

> locals, we learned that it was actually a pretty rough winter for

> the state since coats were needed for about a week. Now that's a

> winter I can handle! It was just very nice for once, throughout the

> winter, to not be cold to the point of it being impossible to warm

> up; that bone chilling cold which

> doesn't leave until the summer thaw. More importantly, I was

> physically able to be outdoors in the midst of winter for great

> lengths of time, and my health never suffered in the least bit.

>

> If given a choice, I would not opt to spend the summer months in the

> south. Then again, when have the disabled, as a group, ever been

> given an option? It is getting late and I am worn out, so I'll be

> calling it a night. Thanks for your input and advice...

>

> Amy M.

>

> From: Amy <charmedcripchic>

> Subject: Re: Living in Florida...Long

> @gro ups.com

> Date: Monday, December 8, 2008, 4:25 PM

>

> This post is such an important thing to share. State by state

> services are a total minefield.

>

> I too considered moving to Florida to be in a better climate and

> closer to relatives {that were still alive at the time}, but I ended

> up finding so many road blocks in services that would seriously put

> me in jeopordy of being ware housed in a nursing home.

>

> I had a health emergency while visiting Fla that also helped me

> discover how very little health professionals in fla knew anything

> about SMA.

>

> I had the same Fla ILC experiences. Their general philosophy is that

> independent living is only for folks less disabled than myself.

> Folks like me 'belong in nursing homes' I've been told by ILC

> directors. They treated it like some sick kind of civic duty to

> unburden my loved ones from care giving the rest of my adult life

> as 'doing the right thing and admitting myself into a home'

>

> The most people can get are homemakers of the agency's choice {not

> your choice} for a measly few hours a week.

>

> There is a " Cash and Counseling " pca program but it's funds a capped

> and it dose not have ear marked gov funding. So as an 'experimental

> program' the state can budget slash this pca program away at any

> given whim.

>

> Remember as well the same goes for independent living related jobs.

> The state budget can easilly reallocate IL or voc rehab funding away

> from these offices and use the money towards hurricane relief, frost

> bitten orange crops or senior citizen programs instead. With central

> florida's recent real estate collapse there are much greater

> forclosures than the norther states are dealing with. Last week more

> than one out of every four homes were being forclosured on {Boston is

> 1 in 10 homes at the momment}.

>

> If you are going to move to Fla year round at least visit during

> summer months and make sure the summer weather is okay for you. I

> had a lot of breathing issues from fla summer weather with mold and

> humidity.

> I think the better tactic would be to get your Illinois legislators

> to advocate {or connect you with a civil rights advocate} to get to

> the bottom of how many months residency is required and then winter

> in Fla.

>

> civil rights and liberties case you could get an advocate that wants

> to champion your cause as a crusade. Many law schools have groups of

> volunteer pro bono lawyers who are yearning to help an oppressed

> person win justice. {if you haven't already} start calling health

> law advocates, disability law, civil liberties groups and email head

> proffessors of law schools and tell them about your situation.

>

> I got some great help this way from energetic people who enjoyed

> sticking it to medicaid for trying to dictate how many times a day

> they'd allow for a pca to help me eat and pee. Another pro bona

> lawyer got the IRS off of my back for years when the IRS wanted to

> count my PCA payroll as my income {which also would've killed my

> services for SSI, food stamps, rent subsidy, etc}. Each of these

> situations didn't win any money from law suits but they did give me

> peace of mind , restored my services, and hopefully made the culprits

> think twice before screwing over another disabled person.

>

> Other things to think about- would you ever consider moving to

> another state that's warmer than Ill but not in the southern 'no

> services for disabled folks' zone?

>

> New York state has better PCA services than California or

> Massachusettes. It's not as warm as Fla but it is warmer than

> Chicago. {you'd also be a few hours from here if you ever wanted to

> hang out with another SMAer named Amy }

>

> I used to want to relocate to California but I'm now very glad I

> didn't because the smog fires smoke earthquakes and extremely high

> energy costs would've sunk me. The PCA system pays different rates

> depending on the county due from union actions {or inactions}.

> Medical is worse for covering things than my current Masshealth.

>

>

[Guest guest]

Is that an invitation? I'd give anything to move away from here! Do

you know much about the PA services down in TX?

On Dec 17, 2008, at 7:45 PM, Lori G wrote:

> I am from N.Y. and left due to the winters. My health improved

> greatly and so did my social life when I moved to Texas. I left and

> never looked back!

>