Topeka Independent Living Resource Center
My daughter thinks I ought to live in a nursing home.
Your daughter probably only wants what's best for you. What she hasn't heard is the good news in our state about what's called attendant services.
Attendant services are most of what people get in nursing homes. The new thing that's happened here in Kansas is that attendant services can be available to people in their own homes. People don't have to go to a nursing home any more to get help with the things they do when they live on their own.
Your daughter maybe sees that you need assistance with one or more of the ordinary things people do every day--things like getting dressed, going to the toilet, bathing, eating, getting in and out of bed, paying bills on time, remembering to take your medications, keeping up with housework.
Many people used to go to nursing homes for help like that. Other people had to move in with their families for the same reason.
But I don't want to be a burden.
Today attendant services can be provided in your home by someone who does that for a living, a personal attendant. The attendant answers to you and does things the way you want them done--and always in private.
How much does it cost?
We don't charge you for anything we do. Our services are paid for by the Medicaid program in Kansas.
Who are you?
TILRC stands for Topeka Independent Living Resource Center. We pronounce it Till-Rick. We're a non-profit group, mostly funded by the state and federal governments. The majority of folks who work here are people who have disabilities themselves. They advocate for and provide services to other people with disabilities.
We do lots of different things at TILRC, but one of the most important to us is to help people stay independent and still get the assistance they need.
We help people apply for Medicaid to pay for attendant services directed by the people who use them. We're proud to be able to say that TILRC worked with Kansas government to make this choice available to people in the first place.
Who can I ask about this?
Call your county S.R.S. office, or the Area Agency on Aging. They'll probably tell you what we already know: TILRC has a pretty good reputation for doing what we say we'll do.
Or call us directly. We'll be happy to meet with you, hear about the specifics of your situation, and answer you questions the best we can. Although what we do is fairly complicated, it's not technical.
We work with people all over the state and even beyond. If you're in the Topeka area, you're welcome to come into our offices. But we'd he happy to come to where you are and meet with you. Just say when.
But my home is gone. I have nothing now.
Maybe you're living in a nursing home, or with a relative, and you'd like to have your own place the way you used to. Or maybe you'd like to move in with somebody you know. If you want any of those things, we can make it happen.
Some people we work for don't have a thing of their own left in the world, not a knife or a fork or kitchen table, not a set of sheets or a bed to put them on. Almost everybody has to start out on their own once in life, and some of us have had to do it twice. It takes a lot of figuring out, but we'll be working with you. You won't have to do it alone.
We have some storage lockers where we keep the furniture it takes to get a household started up again. People and companies donate things to us for just this reason. Most of the time, it's not brand new stuff. It's more the kind of thing people get when they first go out on their own. But once you pick it, it's yours. You own it.
We connect people with housing too, whether it's a private home or apartment or a government-subsidized building. We listen to what you'd like, then set things up so you can look over the alternatives and choose for yourself where you want to live.
You and your relatives are probably worried about very real stuff like what if it's late at night and you can't get into bed by yourself and your attendant doesn't show up?
Everybody needs backup in those situations. Attendant services can be worked out so that you always have backup.
What if the person working as your personal attendant is somebody that you just don't trust?
In the attendant services program we run, you're the boss. You choose the attendant who works for you. (It can be anyone you want--as long as you aren't married to them. That part is a Medicaid law.) You could hire a friend or a neighbor or even a relative to get paid for doing your attendant services.
If you don't know anyone for the job, you could run an ad or we can give you a list of people you might want to interview. But always you get to choose who works for you.
After you hire somebody, if they don't work out the way you hoped, we'll help you change. You are in charge.
Another what if: What if you're like that woman in the commercial and you fall but you can't get up? Everybody needs to be able to communicate in case of an emergency. Some people depend on portable phones. Other people use a gadget called Lifeline that calls a control center where people are on duty 24 hours a day to help. Other people work out signals with their neighbors. We can let you know the alternatives. You pick what works best for you.
But my family still says I'd be safer in the nursing home.
With all respect, we think its fair for you to tell your family--or whoever else wants to make decisions for you--that this is your life and you make your own choices. They wouldn't let you run their lives, would they?
It's a dignity thing, and we understand a little something about that. The people of TILRC are people with disabilities. It always seems like once you have a disability, people just naturally start telling you want to do.
The people at TILRC believe that even if we need a little help, nobody but us can make our choices. Here's what we're getting at: You are the number one all-time best-respected expert on what you want and need.
It's the principle of the thing. We make sure people follow that simple principle when they deal with us. You might want to do the same.
I use a wheelchair now, and my house isn't set up for that.
Whether you need grab bars by the toilet or a ramp up to your door or a chair in your shower or a wider door to your bedroom, we can help get it in place for you. TILRC people are people with disabilities who work on accessibility issues all the time.
This is the part that's kind of technical: People who are hard of hearing can get a light that flashes when the doorbell rings. People sometimes need computers they can use to talk out loud. We're pretty familiar with lots of those kinds of things. Sometimes we can help people get wheelchairs and walkers and automatic-opening doors. We help people get tape recorders and talking books. When people need help breathing, we help them get portable respirators and backup generators.
We know about Hoyer lifts and ostomy bags and dialysis and orthopedic braces and none of it is any big deal to us. It's normal to us because we deal with it every day of the week.
Whether you need what they call "assistive devices" or "home modifications" or both, we probably know what program will help pay for it so that independence works out for you.
But what am I going to live on?
If you're living in a nursing home now, your Social Security check goes to the nursing home and you get about $30 of it to spend every month. When you live on your own, you get to keep the whole check. The minimum Social Security check is about $480.
Granted, that's not a lot of money. But we know people who are living real well out in the community on that little bit. We will help you set up a life in the community that you can afford.
Thanks to what computers can do these days, you can get your bills paid directly out of your account without writing checks. We can help you set that up. We can also set up direct deposit of your social security check so you don't have to stand in line at the bank every month.
I don't like everybody knowing my business.
Nothing you tell the TILRC person who works with you is anybody else's business. That's confidentiality. It's the law and we guarantee we will abide by it.
We don't write reports about you or assess you or chart your progress or talk about you to anybody else without your permission. We don't do anything about you without you.
It takes a lot of paperwork, dealing with government agencies the way we do to get things that people need. So yes, we'll have a file with all your paperwork in it. But nobody gets into that file without your permission. And nothing gets put into your file that you don't know about.
There may be things you want us to talk about with your doctor or your son or your landlady. If you ever do have a situation like that, we have a paper you can sign where you give us permission to talk to just that one person about that just one thing just that one time. We're very strict about not even talking to each other about you without your permission.
We promise this because we're the same way ourselves: what's private is private and it stays that way. Period.
What if I make a plan with you and then decide I want something different?
If you truly want to live on your own, we can make that happen. You don't have to do it alone. And, like anybody else on earth, you have the right to change your mind about what you want.
Sometimes people stay in touch with us for a long time after we get them set up. Sometimes people say goodbye on the day they get where they're going and they don't call again until something new happens.
Any way you do it is fine with us. We're here and we'll be here if you want or need us again. What we won't do is come poking our nose into your life. That's a promise.
ANSWERS FOR FAMILIES
Almost always, friends and families try to do what is best for a person they love. Attendant services are, for most people, a new idea that maybe sounds a little risky.
We want you to know that people all over the United States have been using attendant services for many years now.
Since we meet new families all the time, we get to hear lots of questions. On the next few pages you'll see some of them and read some of the general answers we give.
Here's something we hear from families all the time:
The hardest thing I ever had to do was put my mother in a nursing home.
For a long time, people were faced with these horrible choices. Either they give up their job and their family life to take care of a relative or else put a person they loved in a nursing home.
Today, thanks to the government of our state, Kansans who are or will be eligible for Medicaid and who need some everyday assistance to survive can get that assistance in their own homes.
If people still want to go to nursing homes, that's fine. If people want to move in with their families and their families want to be the ones to help with everyday stuff, that's fine too. But now there's this other choice. It's called attendant services.
What attendant services amount to is getting most of the assistance a person would get if he or she lived in a nursing home. Attendant services can include things like assistance with getting in and out of bed, with bathing and toileting, with shopping and making meals, with eating, with paying bills on time and taking medications and keeping up with housework, and sometimes also with having a nurse take vital signs and set up the pills to take during a week.
Who pays for all this?
Kansas Medicaid pays attendants to do their work. In almost all cases, the person they do the work for is the boss. Being the boss means setting up the schedule, saying how the work is done, and hiring the person who does it. If your mother can't or doesn't want to do all that, she can do just a part of it and a home health agency will take up the slack.
But my dad already lives in a nursing home.
We can help him get set up, get going, and keep going in a place of his own again. This probably sounds too good to be true, or too expensive. But it's happening for more and more Kansans every year. That's the heart of what we do for a living, and it doesn't cost them or their families a dime.
We want to spread the word about these new services. That's why we made this booklet.
What qualifies you to do this work?
We're the Topeka Independent Living Resource Center (TILRC for short, pronounced Till-Rick). We're a non-profit agency and we've been in business since 1980. We are people with disabilities who provide advocacy and services for people with disabilities.
Our job with the new Kansas Medicaid attendant services program is to get attendant services set up and do whatever else a person wants and needs to have happen so they can live independently.
If the person is not yet in a nursing home, our job is to get them the services they need to help them stay independent. If they're already in a nursing home, we help them get established in the community again.
Kansas Medicaid pays us to do this for you, so it's a free service to you or your relative. Of course there's a catch: For folks with a higher income or savings, the federal government and the state of Kansas limit the amount of money a person can have and still get attendant services through Medicaid.
They require that people who have too much money to be Medicaid-eligible--but still need what Medicaid pays for, like attendant services--do a thing called a "spend-down" or "client obligation." Depending on your personal finances, that can be a little or a lot.
The state actually gets the money from that transaction, but they make us collect it for them. We'll tell you all the details and limitations in plain language any time you want to hear about it.
What we'd rather talk about here is closer to our hearts: how we do our job. See, it's not like we have some special formula or any kind of a one-size-fits-all service. We do whatever it takes to get the job done, from big things like attendant services and housing and home modifications to the little last-minute work to make everything come together at the same time.
There's nothing canned or processed about what we do. It would never fit on a form. We tailor what we do so it's what the person wants and needs to live the life he or she wants to live.
It's not simple. In fact, what we do can get pretty complicated--complicated but not technical. We try to explain it so that the people we're doing it for understand it every step of the way.
We can do just a little for somebody or a whole lot. That's up to the person who gets the services.
The rest of this brochure is written for that person. We hope you'll start from the front and read it through to get an idea of what we do and how we do it.
But my father can't do anything for himself.
One time we helped a man live in the community when everyone said it was hopeless. He had been in coma for pretty much all the years since he got hit by a car, and this man was probably dying by the time we met him and his family.
His family wanted to see that he was treated right and kept comfortable the way anybody should be. We helped get the man moved into a small apartment of his own, near his family so they could come and look in on him whenever they wanted to. But this way they didn't have to give up earning a living and taking care of their kids to take care of him.
We got that man set up with attendant services so the family could be sure that he got his food and his personal needs taken care of. That's where he lived and how he lived until the day he died.
We figure that if we can put together services for someone who really can't do anything for himself at all, we can probably do it for your relative too.
In a situation like that, the person who gets the services isn't in charge of them. Someone in the family takes that role, to make sure things work out right. In all the others ways, it's the same deal.
We'd be happy to work with you and your friend or relative. Just give us a call. We'll come out and meet with you.
|This brochure available from Topeka Independent Living Resource Center, 501 S.W. Jackson, Topeka Kansas 66603, Tel: 800-443-2207, E-mail: firstname.lastname@example.org, Web site: http://www.tilrc.org