Re: Illinois family struggles

[Guest guest]

I agree that your situation is really dire and you should be getting assistance

with your sister...in fact...I love your description of what SHOULD be for our

sons, daughter, sisters and brothers. I couldn't agree more.

I do not have ready answers. I wish I did. I find myself in awe of what you

and others have to contend with. The best sources of information would be your

Independent Service Coordination Agency...you should have a case worker who is

assigned to your sister. I am sure you must, since you have applied for home

based funding and you would have done that in collaboration with the case

worker. I know there is some funding for medically fragile individuals...It

would be worthwhile to call Mike Kaminsky at Illinois Life Span, 1-800-588-7002.

I will pass this on to two families I know who have gotten some state assistance

for their adult children and see if they have some information for you.

Ellen

Ellen Garber Bronfeld

egskb@...

Illinois family struggles

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]

Here is one reply from another mom with a child who has medical needs...

Wow, sad situation. I have never been told by any doctor at ton Hospital

or prior to that, Children's Memorial, that they don't take Public aide, I never

received a NO. DHS should be giving her hours for her time caring for her

sister and additional hours for a caregiver, of course it is minimal wages.

Perhaps she could go to a day program but she would still need a caregiver for

suctioning and tube feeding. I wish there was better news for her, it takes a

lot of $$ to care for her sister, that is the bottom line and the government

won't really help. Good luck!! Judy

Ellen Garber Bronfeld

egskb@...

Illinois family struggles

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]

This is a sad, but all too common story. I manage a day program for adults with

developmental disabilities, and I can tell you that there is not enough funding

to come even close to enableing someone with this woman's needs in a typical

program. The services and amenities mentioned in her post are a pipe dream -

we're lucky to be able to afford arts and craft supplies! I often end up using

my own money to buy things that we need, or that I think people will enjoy. I

wonder why an ICF isn't acceptable? There are few CILAs that I know of where

tube feeding and suctioning are supported. ICFs, on the other hand, were

intended for people who had more significant medical needs. Also, ICFs are

funded by public aid, and not DHS. I've heard from many people that they are

much easier to get into because of that reason. I would really encourage the

poster to contact her local PAS agent (if she hasn't already done so).

I wish these women the best of luck!

IPADDUnite@...: egskb@...: Mon, 1 Dec 2008

21:27:34 -0600Subject: Re: Illinois family struggles

Here is one reply from another mom with a child who has medical needs...Wow, sad

situation. I have never been told by any doctor at ton Hospital or prior to

that, Children's Memorial, that they don't take Public aide, I never received a

NO. DHS should be giving her hours for her time caring for her sister and

additional hours for a caregiver, of course it is minimal wages. Perhaps she

could go to a day program but she would still need a caregiver for suctioning

and tube feeding. I wish there was better news for her, it takes a lot of $$ to

care for her sister, that is the bottom line and the government won't really

help. Good luck!! JudyEllen Garber Bronfeldegskb@...----- Original

Message ----- From: sweettart_60638 IPADDUnite Sent: Monday,

December 01, 2008 8:35 PMSubject: Illinois family strugglesHello

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]

If community living for people with disabilities was an accepted everyday

occurrence, the young woman's extraordinary daily living needs would not be a

barrier. Too bad, as a society, we decided, many years ago, to shut these

individuals out of community life. It is more mind-set than anything

else...ok...it is also about how we choose as a society to spend tax dollars...

Ellen

Ellen Garber Bronfeld

egskb@...

Illinois family strugglesHello

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, admini! ster sei zure 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 c ut 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]

What kind of SS benefits is she getting?  When did the benefit amount decrease? 

If she has SS benefits (not SSI) she should have Medicare as well as Medicaid.

 

 

" The secret to l'Arche is relationship: meeting people...heart to heart " .  Jean

Vanier

Visit us on the 2nd Thursday of each month!

 

andra Conroy

Executive Director and Community Leader

L'Arche Chicago 1049 S Austin Blvd Chicago IL 60644                     

Office:708-795-1273 Home: 773-287-8249

From: sweettart_60638 <sweettart_60638@...>

Subject: 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]

Your sister ought to be on the emergency list. If she's not, find out how to get

her there.  However,here in IL the emergency list is something like 7,000 people

long.  And one of the reasons that money is short is that IL is broke, and if it

doesn't get its finances straightened out, it might go bankrupt. 

Those of us on this list are working hard to advocate for our kids with

disabilities, so our other kids (or other friends and relatives, if there are

not siblings) do not have this kind of grief.

This may not solve your challenges quickly, but in your shoes, I'd place phone

calls to my state rep and state senator (those are the ones who work in

Springfield, not DC).  Call them every 2-4 weeks until you get some answers.

Others here will give you more specific suggestions, but I will say that in

dealing with people over the phone, stress that your sister *requires* nursing

care daily (or round-the-clock) or she will die, and that you are the *only one*

holding this together.  Do not talk best case scenarios and praise the helpful

relatives.  Tell them flat out, " If I give up my career to stay at home 24/7 to

care for my sister, then we will both have nowhere to live and nothing to eat. 

Is this what your agency wants? "

-Gail

From: sweettart_60638 <sweettart_60638@...>

Subject: 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 would also suggest calling the Department of Rehab Services (DORS) and see

is she can get into the Home Health Care program. It can help with funding

for nursing and some staff. The challenge is finding the staff as they do

not help with that.

I would suggest also calling your network facilitator and making him/her

aware of your situation. If you are in the Chicago area that would be Ed

McManus (312-814-3417). Let him know your situation, get your name out there

and see what he suggests. Network Facilitators are the local DHS reps who

over see services in their region.

I also agree with the other writer about presenting the worst case scenario

when talking to the Network Facilitator and PAS agency.

If you are not able to find providers who accept Medicaid, I think you can

go on the DHS website and find providers.

Lastly, re: day programs, some agencies have 'grant' funded slots.

Realistically there aren't very many and they are probably already filled,

but at least you can call these agencies and ask to be placed on the

waitlist for a grant funded slot.

Another resource to look at is called Illinois LifeSpan, Here is their link

http://www.illinoislifespan.org/providers/index.asp While this is not a

complete list, it can get you started with connecting to some

resources/supports/services.

One more thing- I would also call your local legislator and make them aware

of your situation. The only way there will be a change in programs and

funding is to make the people who vote on this aware of you and your sisters

needs. If you can't find out who your legislator is, then email me where you

live and I can get that for you.

Ok, this is really the last thing- You can also request case management from

your PAS agency even if you are not in the Home-based program. They may be

able to get you connected to supports and services and waiting lists!

Hope this is helpful and feel free to email me directly.

--

Lew, Service Facilitator

Clearbrook

lisamlew@...

phone/fax 847-681-1357

[Guest guest]

thank you all for your support, suggestions, concerns.  I am getting the support

letters together for my sister, and going to apply one more time for home based

support, and contacting our state offices.  IF she is denied again, I have been

in touch with a lawyer to possibly take legal action. 

 

-Dawn

[Guest guest]

My agency is Suburban Access, my caseworker is great, hence I am getting a case

of " my hands are tied "  

Dawn (sweettart_60638@...)