RE: *SPAM (low): Re: Illinois family struggles

[Guest guest]

Excellent advice, Gail. I know that someone also suggested you call Mike

Kaminsky at the Illinois Lifespan Project for more help.

Call me as well if you want to brainstorm some more.

Charlotte Cronin

Family Support Network

309-693-8981

fsn@...

Illinois family struggles

IPADDUnite

Date: Monday, December 1, 2008, 8:35 PM

Hello

I'm a 28 year old female, I am the care-giver for my 22 year old

sister, both of our parents are deceased. Our father passed away

when we were little, and my mother more recently. Every day I

struggle with finding day time care for my sister so I can work. I

have to work, to help support her and myself, Social Security doesn't

give enough to support her.

I applied for home based support, and for her a home to live in, not

an ICF.

The funding is limited to only those in emergency needs? What is an

emergency? Is an emergency that she has no home, no parents, and she

can't take care of herself? She lives with me in my home, I care for

her, I juggle things around and thank goodness for our loving family

that help were ever they can lend a hand with out getting paid for

it.

Why is money short? Is money being spent on other things? Meanwhile

there are people like me struggling everyday to make ends meet, hence

doing a just good deed to those in need.

Why I struggle to find care for her? My sister needs a nurse to feed

her during the day/night, administer seizure medication into her g-

tube, and provide suctioning support, according to some rules they

have at certain facilities, either that or I can have " Joe "

that is making minimum wage be the one giving my sister seizure

medication, and provide suctioning support to her or changing her g-

tube in her stomach. This is someone's life on the line. That is a

job for the nurses, people who have been educated extensively to

provide that support. She had a nurse with her all day long while

she was in school, right by her side to care for her. Now she is

an " adult " she has nothing. Her condition has not improved at all,

actually it has gotten worse. They will not even approve her for home

based support. My sister needs more surgery, and hence she is older

and don't get " children's benefits " anymore, why not have something

similar for the life of the person, why does the amount of coverage

decrease just because they get older?

...

- My sister that is high functioning, only needs the nurse for key

things in her life (feedings, medication, suctioning support) the

rest of help she needs can be provided by a trained staff member.

She cannot eat food, nor speak, she uses sounds, and the little bit

of sign language that her hands can create. Her mentality is 6-10

years behind, and academically she is at a 2nd grade level.

I am looking for a home for her, a job or volunteer work, anything to

keep her mind and body active during the day

-Why don't these adult facilities have unlimited supplies, high tech

rooms, unlimited opportunities, why don't these places have on site

physical therapists, or swimming pools for therapy, the public

schools have them. These are our children, sisters, brothers,

mothers, fathers, family. They should be getting the best services

and the best care opportunities as everyone else.

Why when I call to make a doctor's appointment for my sister, the

first thing they ask me is " what kind of insurance do you have? " As

soon as a mention " public aid, Medicaid, I am cut off with the

words " oh we don't take that! " WHAT? WHY?

Why aren't people with special needs able to get the care from any

doctor in the state, obviously they need " special care " . Why doesn't

the state pay them doctors more so they will want to treat special

needs people.

Concluding I have applied for state funding for my sister, and she

has been denied twice for home based support! Both of her parents

are deceased, and she is living with me temporarily. I am so

outraged at this system and the way people are being treated. What

does it take to get the fair treatment? I have actually thought about

reaching out to a lawyer for some legal advise. Thanks for listening

to our story.

I will take any comments, feedback from anyone.

[Guest guest]

I agree with Charlotte, Gail...I should have mentioned calls to legislators.

Great advice! Andt thanks for your offer of help, Charlotte.

Ellen

Ellen Garber Bronfeld

egskb@...

Illinois family struggles

IPADDUnite

Date: Monday, December 1, 2008, 8:35 PM

Hello

I'm a 28 year old female, I am the care-giver for my 22 year old

sister, both of our parents are deceased. Our father passed away

when we were little, and my mother more recently. Every day I

struggle with finding day time care for my sister so I can work. I

have to work, to help support her and myself, Social Security doesn't

give enough to support her.

I applied for home based support, and for her a home to live in, not

an ICF.

The funding is limited to only those in emergency needs? What is an

emergency? Is an emergency that she has no home, no parents, and she

can't take care of herself? She lives with me in my home, I care for

her, I juggle things around and thank goodness for our loving family

that help were ever they can lend a hand with out getting paid for

it.

Why is money short? Is money being spent on other things? Meanwhile

there are people like me struggling everyday to make ends meet, hence

doing a just good deed to those in need.

Why I struggle to find care for her? My sister needs a nurse to feed

her during the day/night, administer seizure medication into her g-

tube, and provide suctioning support, according to some rules they

have at certain facilities, either that or I can have " Joe "

that is making minimum wage be the one giving my sister seizure

medication, and provide suctioning support to her or changing her g-

tube in her stomach. This is someone's life on the line. That is a

job for the nurses, people who have been educated extensively to

provide that support. She had a nurse with her all day long while

she was in school, right by her side to care for her. Now she is

an " adult " she has nothing. Her condition has not improved at all,

actually it has gotten worse. They will not even approve her for home

based support. My sister needs more surgery, and hence she is older

and don't get " children's benefits " anymore, why not have something

similar for the life of the person, why does the amount of coverage

decrease just because they get older?

..

- My sister that is high functioning, only needs the nurse for key

things in her life (feedings, medication, suctioning support) the

rest of help she needs can be provided by a trained staff member.

She cannot eat food, nor speak, she uses sounds, and the little bit

of sign language that her hands can create. Her mentality is 6-10

years behind, and academically she is at a 2nd grade level.

I am looking for a home for her, a job or volunteer work, anything to

keep her mind and body active during the day

-Why don't these adult facilities have unlimited supplies, high tech

rooms, unlimited opportunities, why don't these places have on site

physical therapists, or swimming pools for therapy, the public

schools have them. These are our children, sisters, brothers,

mothers, fathers, family. They should be getting the best services

and the best care opportunities as everyone else.

Why when I call to make a doctor's appointment for my sister, the

first thing they ask me is " what kind of insurance do you have? " As

soon as a mention " public aid, Medicaid, I am cut off with the

words " oh we don't take that! " WHAT? WHY?

Why aren't people with special needs able to get the care from any

doctor in the state, obviously they need " special care " . Why doesn't

the state pay them doctors more so they will want to treat special

needs people.

Concluding I have applied for state funding for my sister, and she

has been denied twice for home based support! Both of her parents

are deceased, and she is living with me temporarily. I am so

outraged at this system and the way people are being treated. What

does it take to get the fair treatment? I have actually thought about

reaching out to a lawyer for some legal advise. Thanks for listening

to our story.

I will take any comments, feedback from anyone.