Re: Help for someone offlist re: access mods?

[Guest guest]

I don't have any useful advice. I'm just thinking, wow... 13 years old. Newly

disabled. And in foster care. Poor girl, I hope she's doing alright!

~e

[Guest guest]

I thought the same thing e, how difficult this must be for

her! I hope she is doing alright too.

> I don't have any useful advice. I'm just thinking, wow... 13 years

old. Newly disabled. And in foster care. Poor girl, I hope she's

doing alright!

>

> ~e

[Guest guest]

e, Not only did I think the same thing about the girl, but also

thought about how wonderful the foster parents are!

Later,

Mike Briggs

Photo Gallery: http://www.pbase.com/photogrif/

" Fish Gotta Swim, I Gotta Dive "

[Guest guest]

Thank you Kendra, that was wonderful advice!

> When my parents remodeled our first home, we consulted an

> Architectural Barrier Consultant (ABC) through our local

independent

> living center. Perhaps she could call up some ILC's and ask if they

> have an ABC listing or department. All of our funding came through

> the program as well.

>

> If that fails, I would defintely start with door and room

(especially

> bathroom) dimensions being wide enough for a full turn around and

the

> width of the wheelchair. Roll-in closets for ease of reaching

> supplies (if she still has mobility to do so herself) and all

desks,

> tables and sinks high enough with knee room to pull under them. Oh

> yes, and the best thing we ever did in the bathroom (besides a

> hydrolic lift shower chair) was put the showerhead in the center of

> the tub instead of on one of the sides. This way, no matter which

> position they prefer to transfer, the shower will always be of

reach

> and easily manuevered for a new position.

>

> Also, she may want to consult the ADA (they have extremely specific

> details about buildings - although you can construct your own home

as

> you please - but it is a good place to start) and a construction

> crew. They are SUPPOSED to be trained and have knowledge of all ADA

> regulations. However, we have found that many are not and need

> assistance.

>

> ~Kendra

[Guest guest]

Yeah, I thought that too. They have got to be incredible people! I thought that

foster parents were a temporary thing though... Are they trying to adopt or

something more permanent? (I don't actually expect an answer, since probably

nobody knows and it's really none of my business. I just feel for the girl and

that makes me curious... Besides, she's a Washingtonian, we have a bond!)

~e

In a message dated 10/29/2003 7:54:28 PM Eastern Standard Time,

briggs.m@... writes:

> e, Not only did I think the same thing about the

> girl, but also

> thought about how wonderful the foster parents are!

[Guest guest]

We are in the middle of this same thing. Here's two web sites we've

found very useful.

Jerry

http://www.homemods.org/

http://www.hud.gov/groups/disabilities.cfm

[Guest guest]

Please excuse my cynicism, but we recently had a conversation with

the Social Worker from our local school district about obtaining

funding for E-Mods to our house. She commented that it was too bad

we are our daughter's real parents and not foster parents because it

was easier to get more money for E-mods through state programs as a

foster parent than it is for everyone else. I salute anyone who

takes on the monumental task of being a foster parent, but I am

occasionally taken back by all of the money that is made available to

do so. It'd be nice if such resources were avialble for people

struggling to take care of their own. For a split-second, it would

almost makes someone consider giving up their special needs child to

the government beureaucracy. Oh well, sorry for griping...

Jerry

> Yeah, I thought that too. They have got to be incredible people! I

thought that foster parents were a temporary thing though... Are they

trying to adopt or something more permanent? (I don't actually expect

an answer, since probably nobody knows and it's really none of my

business. I just feel for the girl and that makes me curious...

Besides, she's a Washingtonian, we have a bond!)

>

> ~e

>

> In a message dated 10/29/2003 7:54:28 PM Eastern Standard Time,

briggs.m@c... writes:

>

> > e, Not only did I think the same thing about the

> > girl, but also

> > thought about how wonderful the foster parents are!

[Guest guest]

s, the Unique Princess

" Follow your heart, your intuition, it will lead you in the right direction. "

-Jewel

[Guest guest]

I've been thinking about this tragic and sad situation too. It must be so hard

suddenly being put in the totally new position, having to face completely new

challenges and being forced to deal with all of them. I can only imagine how

much it sucks for people like her (today you can walk, the next day you can't)

and I'm so grateful that I don't remember myself walking, and even if I could

remember it (I have photos of me walking at the age of 2, just don't remember

it) SMA comes so gradually, hardly even noticing the progression, so it wouldn't

be nearly as hard emotionally as it must be with the sudden loss of the walking

ability. But there's always the great human process of getting used to

everything in life and even the greater ability to accept life as it is and as

it comes. So this girl will find that in time it will only get easier, and I

wish her all of the strength and best wishes.

By the way, in this new area where I've recently moved, there a few paraplegics

in the neighborhood - boys and girls around my age. So, it's great to have

people in similar conditions, and I'm hoping to become friends with them, as

I've never really had friends in wheelchair who are in " real life " , not just

online.

Take care,

Radmila

>I thought the same thing e, how difficult this must be for

>her! I hope she is doing alright too.

> I don't have any useful advice. I'm just thinking, wow... 13 years

old. Newly disabled. And in foster care. Poor girl, I hope she's

doing alright!

>

> ~e

[Guest guest]

The decision to either build/buy an accessible home or modify an

existing one is different for everyone. It depends upon where you

live and what your needs are. Until recently, we had intended to

build a completely accessible home from scratch using a local

contractor, BUT... after running the numbers, we have now decided to

modify our current ranch-style home. It'll be cheaper for us and we

will essentially end up with the same thing. Medicaid will chip in

some money for e-mods, but they won't help you buy a new house.

Also, you can complete the mods in stages over time and therefore

spread out your payments. However, in different parts of the

country, we might have made a different dcision.

Jerry

> Is there money/grants out there for the disabled to mod homes? Our

house is

> so small, we've totally outgrown it. My parents dream is to build

a home, so

> that it could be designed to our specifications. Sometimes I think

it be

> cheaper to buy an already built home between 2500 to 3000 sq ft (no

older than 15

> yrs old) and just add on/modify it. Would this be more cost

officient or is

> it better/more cost offecient to build?

>

>

> s, the Unique Princess

>

> " Follow your heart, your intuition, it will lead you in the right

direction. "

>

> -Jewel

>

>

>

[Guest guest]

Even though it's a Federal program, Medicaid is administered by the

states, so it's slightly (or sometimes dramatically) different in

each state. If you qualify for Medicaid already, half the battle is

done. In NYS, you can get money toward environmental mods either

through one of the waivers (if you qualify) or through " family

reimbursement " programs administered by an outside agency. Usually

the waivers are difficult to qualify under because you have to prove

an immediate need that will enhance your ability to live better, but

frequently a descriptive letter from your PT will work for that. The

waivers provide a higher maximum amount. By contrast, the family

reimbursement programs entail making applications to numerous

(sometimes dozens) of agencies that have Medicaid money to give out

during any one year. They usually limit what they pay you to a

couple hundred dollars, and the total Medicaid dollars you can get

from all agencies is capped at around $1,500 a year. Unfortunately,

I can't tell you how FL Medicaid works. I would recommend you start

calling anyone and everyone and being a pest and ask lots and lots of

questions. Call any agency in the phone book (government or private),

and PT , hospital, building contractors. You will eventually find

people who know bits & pieces of information. We've found no one

person who can guide us through what Medicaid offers. I'm not sure

any such person exists!

Jerry

> I live in central Fl and the cost of living is much cheaper here.

So how do

> you get Medicaid involved in e-mods? Basically, I just need a huge

bedroom

> (the size of a master bedroom or a little smaller) w/ a big

bathroom that has a

> whirlpool. Other minor things. I would love to move into a new

home, but

> we'll see what happens!

>

> s, the Unique Princess

>

> " Follow your heart, your intuition, it will lead you in the right

direction. "

>

> -Jewel

>

>

>

[Guest guest]

Jay,

You're right, but a lot of what qualifies depends upon your skill in

writing a justification. For example, we have friends who got

Medicaid to pay for a fence around their backyard. This was done by

saying that their son who is autistic may wander off when playing

outside. Also, the things Medicaid approves is frequently shear

randomness. There's no logic to what gets funded from one minute to

the next. I have met people who have become masters at applying for

Medicaid assistance in paying for all sorts of things you wouldn't

think could get approved. Sometimnes these people seem very

unscrupulous, but they are doing nothing illegal. They just play the

system. I truly believe a lift for your basement could get at least

partial funding if written up the right way. Maybe not on the first

application, or the 2nd or 3rd, but you could get it eventually if

you figure out how to ask for it. I certainly don't condone milking

the system like that, but you should be aware that there are plenty

of people out there doing it every day!

Jerry

> Jerry,

>

> You said, " Usually the waivers are difficult to qualify under

because

> you have to prove

> an immediate need that will enhance your ability to live better " .

>

> However, my understanding is that you must demonstrate a medical

need.

> An example would be, If my son could get into the basement of our

home

> he could participate in a number of hobbies that he can't today

because

> of space constraints in the main living are of our home (ex. model

> railroading, race track, billiards, etc.). To do this we would

need a

> wheelchair lift to get him down there. Unfortunately, these are

things

> that medicaid says are " not medically necessary " , and they typically

> reject them according to our service coordinator. Have you heard

> something different than that?

>

> Jay