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

[Guest guest]

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.