"The leading national advocacy group, People With Disabilities, has launched a plan which it says will address better access to mainstream services and reduce the need for institutionalised care.
The plan was launched in Sydney last night.
Members of People with Disabilities expressed concern about a lack of dialogue with the Federal Government.
People with Disabilities' vice president Faye Druett says carers get plenty of attention at election time but the disabled community feels ignored." via ABC.net.au
The group's positiion is that, with changes to community care and services, more people can live in the community and many will lead less solitary lives.
Showing posts with label inadequate social services for disabled. Show all posts
Showing posts with label inadequate social services for disabled. Show all posts
Saturday, September 22, 2007
Saturday, September 15, 2007
If I had a power chair that could go outside..
I'd be out right now. I have a manual chair but two injured shoulders so can't use that to go out. I have a scooter but am too tired to sit up in it- from working .(That trunk control thing.) I have a power chair but it's an inside one- and since I bought it on ebay, it's old. Really old. But a lot better than nothing. I'm one of the lucky ones.
Yet I feel inadequate because, although I work as hard as I can, I can't afford to "fix" this. Not only for myself, but for many others I care about. We are not alone. The way the current system is set up, I fall through the holes of it like many others.
So if anyone else out there is reading this and can't afford what they need, but is being told it's their fault (either implicitly or expressly), let me share this little jingle I wrote today as I sit here, yet another sunny day, inside. If your wheelchair is broken and you can't afford to get it fixed, or you've put in a claim and you're waiting for Godot (no not the DME provider - it's a literary reference, google it) - join me.
I hope Peter, Paul and Mary forgive me for stealing their "If I had a hammer " music for this. I dedicate it to all the people on Medicare who suffer with the InHome wheelchair restriction and all my friends who are being denied insurance claims on their ultralightweight wheelchairs. Those who can, hold up your screwdrivers and do the wave as you sing along with me.
"If I had the right wheelchair
I'd roll in the morning
I'd roll in the evening
All over the land
I'd roll for freedom
I'd roll for justice
I'd roll for those who can't roll for themselves
All over the land"
Ok that's the easy part. I see you in the back - hold up that screwdriver! And what do you have there? Ooooh - a roll of duct tape. Excellent. Can I borrow some? Ok, onto the first verse...
"I could give a thousand reasons
Why we should all care
That the high cost of wheelchairs
Is too much to bear
Maybe one day you will know
First hand that you can't go
Anywhere without the right chair for you
Nowhere in the land.
I guarantee that
By then it's too late
'Cause when you speak up
You'll be told to be patient and wait
By others who are out and about
And don't get it when you shout
I want to roll and roll and roll and roll
All over the land!
There's only one hope
That we'll get out soon
That's if we all sing this song
Even if it's in our room
Sing it to everyone
Sing it out loud and strong
Because our words can ring
All over the land.
If I had the right wheelchair
I'd roll in the morning
I'd roll in the evening
All over the land
I'd roll for freedom
I'd roll for justice
I'd roll for those who can't roll for themselves
All over the land"
And, in the meantime, if I can't roll - I'll write. Because I see the neglect caused by the myriad of holes in our system as a crime against those who are on what amounts to house arrest.
May God forgive us all for looking the other way.
Click above if you'd like to learn about the Medicare In Home Restriction .
Yet I feel inadequate because, although I work as hard as I can, I can't afford to "fix" this. Not only for myself, but for many others I care about. We are not alone. The way the current system is set up, I fall through the holes of it like many others.
So if anyone else out there is reading this and can't afford what they need, but is being told it's their fault (either implicitly or expressly), let me share this little jingle I wrote today as I sit here, yet another sunny day, inside. If your wheelchair is broken and you can't afford to get it fixed, or you've put in a claim and you're waiting for Godot (no not the DME provider - it's a literary reference, google it) - join me.
I hope Peter, Paul and Mary forgive me for stealing their "If I had a hammer " music for this. I dedicate it to all the people on Medicare who suffer with the InHome wheelchair restriction and all my friends who are being denied insurance claims on their ultralightweight wheelchairs. Those who can, hold up your screwdrivers and do the wave as you sing along with me.
"If I had the right wheelchair
I'd roll in the morning
I'd roll in the evening
All over the land
I'd roll for freedom
I'd roll for justice
I'd roll for those who can't roll for themselves
All over the land"
Ok that's the easy part. I see you in the back - hold up that screwdriver! And what do you have there? Ooooh - a roll of duct tape. Excellent. Can I borrow some? Ok, onto the first verse...
"I could give a thousand reasons
Why we should all care
That the high cost of wheelchairs
Is too much to bear
Maybe one day you will know
First hand that you can't go
Anywhere without the right chair for you
Nowhere in the land.
I guarantee that
By then it's too late
'Cause when you speak up
You'll be told to be patient and wait
By others who are out and about
And don't get it when you shout
I want to roll and roll and roll and roll
All over the land!
There's only one hope
That we'll get out soon
That's if we all sing this song
Even if it's in our room
Sing it to everyone
Sing it out loud and strong
Because our words can ring
All over the land.
If I had the right wheelchair
I'd roll in the morning
I'd roll in the evening
All over the land
I'd roll for freedom
I'd roll for justice
I'd roll for those who can't roll for themselves
All over the land"
And, in the meantime, if I can't roll - I'll write. Because I see the neglect caused by the myriad of holes in our system as a crime against those who are on what amounts to house arrest.
May God forgive us all for looking the other way.
Click above if you'd like to learn about the Medicare In Home Restriction .
Tuesday, September 4, 2007
NPR: Study shows care for mentally ill lacking
An audio of the Morning Edition deals with this issue. Click above.
"A new study in The Lancet, an independent voice in global medicine, shows no country does a particularly good job caring for those with serious psychiatric illnesses. Among findings: in Africa, there's one psychiatrist for every 2 million people; while in Europe, there's one for every 10,000. Still, there are things poor countries can do to help the mentally ill." Via NPR
"A new study in The Lancet, an independent voice in global medicine, shows no country does a particularly good job caring for those with serious psychiatric illnesses. Among findings: in Africa, there's one psychiatrist for every 2 million people; while in Europe, there's one for every 10,000. Still, there are things poor countries can do to help the mentally ill." Via NPR
Friday, August 24, 2007
Hofstra mourns the loss of Dr. Frank Bowe
Dr. Bowe was a distinguished professor and disability advocate. He passed away on August 21.
"His latest study, released in September 2006, revealed that Americans with disabilities – the nation’s third largest minority – are the least likely of any population within the country to achieve the American dream. Dr. Bowe reported that more than a quarter of this demographic live in poverty (75% earn less than $20,000 annually) and fewer than half have private health insurance. His research found that many adults with disabilities subsist on Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), and although the monthly funds received from those programs provide barely livable wages, the benefit of Medicare and/or Medicaid is something this population cannot do without.
Dr. Bowe also examined education in this study and found that despite measures to level the playing field, educational opportunity for students with disabilities and those without is not parallel. While the typical 9-year-old would be in the 4th grade, a 9-year-old student with disabilities is more than half likely (61%) to be in the third grade. Among high school students, the vast majority of 15-year-old students with disabilities are not with their same age peers in the 10th grade but in 9th or 8th grades." Via Hofstra University web site
A link to Dr. Bowe's site, including his writings and work, can be clicked on the heading of this post.
[visual description: A photo of Professor Bowe is shown. He is wearing a gray suit with a checkered tie.]
Friday, July 6, 2007
If I were disabled, I'd - play checkers?
I once saw a cartoon. There was an amputee, without arms or legs, in a cart in front of a building. A man walking by had put a dollar bill in the amputee's mouth and he was saying "And I don't even get a thank you?"
This image reminded me of the confusion that occurs when well meaning people attempt "helping" people with disabilities before even asking if they want help - or how they want help. Over the years I've had people who showed up to help - only to assume things and then proceed to "help" in various ways that were not helpful.
If anyone is thinking that "the charity case" model no longer exists, let me assure you it's alive and well. It's rampant among volunteers and even in many social service agencies (other than those who have worked really hard to switch over to a "consumer directed model"). While there are exceptions to the charity case model, I've run into it many times over the years. It's a frustrating and often demeaning experience, one that I steer away from at all costs now that I can spot it.
The problem with the charity model is that it creates a trickle down system. Basically, the giver defines what he/she gives and the recipient takes it. Like the little old lady who is taken across the wrong street by a well meaning Boy Scout, the recipient often doesn't feel grateful because what is given may be inappropriate or unwanted - or even put him into a worse position than before. But the recipient is supposed to act grateful anyhow because the giver meant well.
When applied over and over again to the life of a person who is disabled and relying on help, this charity model is disastrous. I've seen it myself where volunteers come in and decide I need two hours of companionship or a game of checkers when I have work due the next day and, if I go along with this, I'll be up until 2 a.m. finishing what I have to do. I can have a pile of papers that need numbering - which would be a great way to be helped, but under the charity model, it's deemed inappropriate for me to pick a task. I've been told so many times.
"These people are giving up their time to come over and keep you company and you won't even play checkers with them?" I've been told.
Yeah, how ungrateful can I be?
In no way at no time do any of these people even see me as a person. I'm a "project". Even though I'd much prefer we spend the time doing other things - maybe grooming my fluffy cat - and things that I can't do because of my hand impairment , that never seems to work out. I know it's not as much fun as checkers, but we can talk while we do those things too.
As you've probably guessed, I no longer participate in programs that use the charity model. I know most disabled people don't. What is really help is when someone asks what I need help with. Of course, they're free to decline helping if they don't want to - and many do. They want to be helpful in their way, doing what they (I suppose) would want done if they were (which they're not) disabled.
Playing checkers.
This image reminded me of the confusion that occurs when well meaning people attempt "helping" people with disabilities before even asking if they want help - or how they want help. Over the years I've had people who showed up to help - only to assume things and then proceed to "help" in various ways that were not helpful.
If anyone is thinking that "the charity case" model no longer exists, let me assure you it's alive and well. It's rampant among volunteers and even in many social service agencies (other than those who have worked really hard to switch over to a "consumer directed model"). While there are exceptions to the charity case model, I've run into it many times over the years. It's a frustrating and often demeaning experience, one that I steer away from at all costs now that I can spot it.
The problem with the charity model is that it creates a trickle down system. Basically, the giver defines what he/she gives and the recipient takes it. Like the little old lady who is taken across the wrong street by a well meaning Boy Scout, the recipient often doesn't feel grateful because what is given may be inappropriate or unwanted - or even put him into a worse position than before. But the recipient is supposed to act grateful anyhow because the giver meant well.
When applied over and over again to the life of a person who is disabled and relying on help, this charity model is disastrous. I've seen it myself where volunteers come in and decide I need two hours of companionship or a game of checkers when I have work due the next day and, if I go along with this, I'll be up until 2 a.m. finishing what I have to do. I can have a pile of papers that need numbering - which would be a great way to be helped, but under the charity model, it's deemed inappropriate for me to pick a task. I've been told so many times.
"These people are giving up their time to come over and keep you company and you won't even play checkers with them?" I've been told.
Yeah, how ungrateful can I be?
In no way at no time do any of these people even see me as a person. I'm a "project". Even though I'd much prefer we spend the time doing other things - maybe grooming my fluffy cat - and things that I can't do because of my hand impairment , that never seems to work out. I know it's not as much fun as checkers, but we can talk while we do those things too.
As you've probably guessed, I no longer participate in programs that use the charity model. I know most disabled people don't. What is really help is when someone asks what I need help with. Of course, they're free to decline helping if they don't want to - and many do. They want to be helpful in their way, doing what they (I suppose) would want done if they were (which they're not) disabled.
Playing checkers.
Monday, June 25, 2007
Lumping together elder care and people with disabilities: a poor fit
At my parish , there is a caregivers group. It focuses mostly on caregiving of parents, although all are welcome. I spoke to the group on issues they face with elderly caregiving and shared some of my experiences as a person who both has a personal assistant and an aging parent.
One thing became massively clear to me: the issues concerning elder care very significantly from those facing people with disabilities who need the services of a PA. I really felt, which I relayed later on to the woman running the group, that there were others better qualified to talk about elder care. I gave her a few names of folks who work in the field.
Our social programs have tended to lump together the services for both elders and disabled folks. It is more cost effective to do so. But it's incongruent. Services geared toward the elderly fulfill different needs than those created for people with disabilities. Our needs are different. Yet we still put seniors and the disabled together in federal housing, meal programs, transportation services and the like.
This has stalled progress in many areas for people with disabilities since, aside from the personal assistant care programs, we lack social programs designed for their needs. At present, a social worker writes down that you're receiving services from such and such a program for seniors. Whether those services meet your needs or not, it's on paper and that goes to decrease the hours you may receive from a PA. Worse yet, if you "complain" that the services don't meet your needs, the pen comes out and you're deemed "noncompliant." The prevailing thought seems to be that you're turning down help and assistance if you point out that the elder service organizations don't meet your needs.
The head of one local organization run for the aged really got perturbed at me when I explained that their services didn't match my needs. The woman began to argue with me, telling me that they "help other young people with disabilities too". I told her that every time I asked for help, she told me it was something they didn't do . Yet even though I received no services from them, they would call and insist I be home to accept a "senior package" which contained items for seniors or a visit or some such thing. They never came when scheduled but would call and reschedule more times that I had to be home for these things, telling me "they" were busy. Whenever this happened I would look down at my stack of work and sigh. I asked her if she could just take me off the list for the packages, etc. and she adamantly refused, saying it would cause them too much work to "treat me differently". She just couldn't see things from my point of view- and ended the conversation by saying I would be struck off the list if I couldn't go along with the packages. That was fine with me! Clearly I had become the noncompliant patient to her.
There is a vast difference between a medical model of care and a consumer model, which disability advocates have fought for and incorporated in personal assistant/independent living programs. A medical model of care sees the recipient as a passive participant. Think of a nursing home situation where others run the schedule and tell the patient what his/her needs are. Compliance is the goal along with efficiency. This model is behind most elder care services to date. (I bet there are lots of seniors who don't like it either.) They tailor their services and you receive them. You have no input into them.
In a consumer model of care which is used in the Personal Assistant Program I am in, the (disabled) consumer is empowered to direct his/her own care. There is a structure in which an evaluation is done and a task list is drawn up, but within those guidelines a consumer acts as the employer of the personal assistant and directs the care.
You can see the vast difference in these approaches. Supplementing hours to a personal assistant program with services from a medical model just doesn't fit. There are legitimately different needs for seniors and disabled people and services designed for the elderly should not be forced upon people with disabiliities when they are inappropriate.
One thing became massively clear to me: the issues concerning elder care very significantly from those facing people with disabilities who need the services of a PA. I really felt, which I relayed later on to the woman running the group, that there were others better qualified to talk about elder care. I gave her a few names of folks who work in the field.
Our social programs have tended to lump together the services for both elders and disabled folks. It is more cost effective to do so. But it's incongruent. Services geared toward the elderly fulfill different needs than those created for people with disabilities. Our needs are different. Yet we still put seniors and the disabled together in federal housing, meal programs, transportation services and the like.
This has stalled progress in many areas for people with disabilities since, aside from the personal assistant care programs, we lack social programs designed for their needs. At present, a social worker writes down that you're receiving services from such and such a program for seniors. Whether those services meet your needs or not, it's on paper and that goes to decrease the hours you may receive from a PA. Worse yet, if you "complain" that the services don't meet your needs, the pen comes out and you're deemed "noncompliant." The prevailing thought seems to be that you're turning down help and assistance if you point out that the elder service organizations don't meet your needs.
The head of one local organization run for the aged really got perturbed at me when I explained that their services didn't match my needs. The woman began to argue with me, telling me that they "help other young people with disabilities too". I told her that every time I asked for help, she told me it was something they didn't do . Yet even though I received no services from them, they would call and insist I be home to accept a "senior package" which contained items for seniors or a visit or some such thing. They never came when scheduled but would call and reschedule more times that I had to be home for these things, telling me "they" were busy. Whenever this happened I would look down at my stack of work and sigh. I asked her if she could just take me off the list for the packages, etc. and she adamantly refused, saying it would cause them too much work to "treat me differently". She just couldn't see things from my point of view- and ended the conversation by saying I would be struck off the list if I couldn't go along with the packages. That was fine with me! Clearly I had become the noncompliant patient to her.
There is a vast difference between a medical model of care and a consumer model, which disability advocates have fought for and incorporated in personal assistant/independent living programs. A medical model of care sees the recipient as a passive participant. Think of a nursing home situation where others run the schedule and tell the patient what his/her needs are. Compliance is the goal along with efficiency. This model is behind most elder care services to date. (I bet there are lots of seniors who don't like it either.) They tailor their services and you receive them. You have no input into them.
In a consumer model of care which is used in the Personal Assistant Program I am in, the (disabled) consumer is empowered to direct his/her own care. There is a structure in which an evaluation is done and a task list is drawn up, but within those guidelines a consumer acts as the employer of the personal assistant and directs the care.
You can see the vast difference in these approaches. Supplementing hours to a personal assistant program with services from a medical model just doesn't fit. There are legitimately different needs for seniors and disabled people and services designed for the elderly should not be forced upon people with disabiliities when they are inappropriate.
Thursday, April 19, 2007
We have to do something about The Boxes
My aide spent hours this afternoon getting rid of boxes. There were big boxes, small boxes, medium sized boxes - all over the place.
Why? Because by the time my aide does everything I need done plus those extra things that happen in life, there is no time left to deal with organizing things . So boxes happen. Clutter starts and grows. And suddenly I'm surrounded by boxes. The boxes become a metaphor for the fact that there's just too much to do.
I get used to them. I roll around the boxes that begin to jut out from the sides of my bed. Then boxes appear in hallways and those extra spaces in corners so that there's just enough room for my wheelchair to get through. Almost like developing body memory, I bump into "new boxes" when they are first placed somewhere but in a few days I learn to go around them. I don't think of them as boxes. I think of them as walls or room divisions. After all I'm a quadriplegic and can't move them at all so once they're placed, they stay put.
Lately it's become clear that something was going to have to be done about the Boxes. I tried to hire a few people to deal with the boxes. Some came once or twice but no one was able to handle the situation. A few ran out when they saw how many boxes had accumulated. Cowards, my aide said to me. Wimps, I agreed. It became apparent that this was yet another thing my aide was going to have to do. We talked about it. "Make a list" my aide said so I wrote down "Do something about The Boxes."
Then yesterday UPS arrived - with three more boxes. There was simply nowhere to put them. It was like a cruel joke. And I emailed her "The next time you come over we HAVE to do something about The Boxes." She wrote back "OK. Will do."
So today my aide arrived wearing combat gear. She has special clothes she wears when she's going to do a Big Job. Boxes were everywhere. She looked around woefully. I felt sorry for her. I watched as she ran her hand through her hair. She took a step back, then held her hands up and said "OK, OK, let me do this. Let me concentrate."
I tried to make a few suggestions but she gave me a look similar to that of Simon Cowell after Sanjaya sings. I sighed and backed off. My aide took things out of small, intermediate and big boxes. Objects flew, papers were stacked and boxes were crushed. Dust rose and fell as she whipped out the hand vac. The cat sat on papers, stepped over things and tried to sit in now empty boxes. I rolled over extension cords, papers and piles of stuff. My aide periodically stopped, looked around frantically at me and the cat and then kept going. For hours. I began to fear for her sanity. I closed my eyes, unable to watch any longer.
And then I heard her say "I'm done."
I opened my eyes. There were no more boxes. Tentatively I rolled around, testing out corners that had reappeared, making turns I hadn't been able to navigate in months and oohing and aahing at the extra space. My aide got herself a diet Coke and stood watching me.
"Thank you," I said.
We hugged. The cat , I think, danced. Maybe not. But the joy was palpable. We were "caught up" despite the system, despite the odds against it - all the things on the "regular list" that need to be done and all the mini emergencies that happen that we dodge and duck.
There is hope in the space that has opened up. For a time, my aide and I can relish the freedom of knowing that we got to The Boxes.
Why? Because by the time my aide does everything I need done plus those extra things that happen in life, there is no time left to deal with organizing things . So boxes happen. Clutter starts and grows. And suddenly I'm surrounded by boxes. The boxes become a metaphor for the fact that there's just too much to do.
I get used to them. I roll around the boxes that begin to jut out from the sides of my bed. Then boxes appear in hallways and those extra spaces in corners so that there's just enough room for my wheelchair to get through. Almost like developing body memory, I bump into "new boxes" when they are first placed somewhere but in a few days I learn to go around them. I don't think of them as boxes. I think of them as walls or room divisions. After all I'm a quadriplegic and can't move them at all so once they're placed, they stay put.
Lately it's become clear that something was going to have to be done about the Boxes. I tried to hire a few people to deal with the boxes. Some came once or twice but no one was able to handle the situation. A few ran out when they saw how many boxes had accumulated. Cowards, my aide said to me. Wimps, I agreed. It became apparent that this was yet another thing my aide was going to have to do. We talked about it. "Make a list" my aide said so I wrote down "Do something about The Boxes."
Then yesterday UPS arrived - with three more boxes. There was simply nowhere to put them. It was like a cruel joke. And I emailed her "The next time you come over we HAVE to do something about The Boxes." She wrote back "OK. Will do."
So today my aide arrived wearing combat gear. She has special clothes she wears when she's going to do a Big Job. Boxes were everywhere. She looked around woefully. I felt sorry for her. I watched as she ran her hand through her hair. She took a step back, then held her hands up and said "OK, OK, let me do this. Let me concentrate."
I tried to make a few suggestions but she gave me a look similar to that of Simon Cowell after Sanjaya sings. I sighed and backed off. My aide took things out of small, intermediate and big boxes. Objects flew, papers were stacked and boxes were crushed. Dust rose and fell as she whipped out the hand vac. The cat sat on papers, stepped over things and tried to sit in now empty boxes. I rolled over extension cords, papers and piles of stuff. My aide periodically stopped, looked around frantically at me and the cat and then kept going. For hours. I began to fear for her sanity. I closed my eyes, unable to watch any longer.
And then I heard her say "I'm done."
I opened my eyes. There were no more boxes. Tentatively I rolled around, testing out corners that had reappeared, making turns I hadn't been able to navigate in months and oohing and aahing at the extra space. My aide got herself a diet Coke and stood watching me.
"Thank you," I said.
We hugged. The cat , I think, danced. Maybe not. But the joy was palpable. We were "caught up" despite the system, despite the odds against it - all the things on the "regular list" that need to be done and all the mini emergencies that happen that we dodge and duck.
There is hope in the space that has opened up. For a time, my aide and I can relish the freedom of knowing that we got to The Boxes.
Thursday, March 22, 2007
Behind closed doors: when a service does us a disservice
When all is said and done about funding difficulties for personal care assistants, I find that there are still inherent difficulties in the arrangement as it is set up in many areas.
We can all agree that the pay scale is horrendously low for personal care assistants. These folks are being asked to perform a multitude of tasks that vary from day to day. Some of the tasks are distasteful, boring or time consuming. It is, in some respects, a job many people would not want. And nothing I write from here on in changes any of those injustices from the pca's point of view. Like many other people with disabilities, I can understand that these problems add to high turnover and poor attitude toward the job.
As a person with a disability, however, my perspective is different. I feel that even if we solved some of these problems, the way these services are being delivered is a fundamental part of the problem. I cannot tell you how often I have worked with a personal care assistant (and make no mistake about it - having one is work) and found it a frustrating experience. And this happens even when the pca has demanded - and received- extra compensation from me in order to even show up. The money is not the entire issue. Because of the way society views people with disabilities, we need to revamp the way these services are provided. This is because the current delivery of services is based on outdated beliefs that most people with disabilities are passive recipients of services.
Why do I say this? Because, in my past experience*, the majority of pca's do not treat their job as a job. They do not show up on time. They are not accountable for what they do - or do not do. This means I have to bring in another person to finish or do their work. They call their friends and family, doctors, car mechanics, etc. during the short hours I am allotted while my time is tied up waiting for them to help me. Some of them bring food and try to squeeze in a half hour of eating during my allotted hours.
This litany of rants is not to condemn pca's - although it may be taken that way . It's to highlight the fact that, along with adjusting the pay scale for pca's, we need to take a good hard look at the level of care that is being provided. I certainly support better pay and working conditions for pca's. I used to work as one for four dollars an hour years ago.
But I also want to see a dialogue started that includes our voices - those of us with disabilities who hire pca's and know the ins and outs of how to and how not to do the job. Being a pca is a service job that involves providing a service to the consumer. Too many times it is treated as if it is not about the person with a disability at all but a matter of just showing up - whenever - and writing it down on a piece of paper. We need a system where there is accountability for job performance just as there is for other jobs.
Saying these things, of course, puts me out on a limb. Any time any of us speak up about poor service from a pca, we put ourselves at risk of being the problem. We all know the drill. The agency tells us we are being unreasonable and difficult. Social workers tell us we have to make compromises. A checkmark is put next to our name on the agency list and we are told we have to find our own aides. This is what keeps many people with disabilities quiet.
Meanwhile we're looking across the room at a pca who is on our couch, watching our TV and eating Cheese Doodles. And we remain hungry, unbathed and in the same clothes we were in when she arrived.
Even considering backlash, we need to speak up about what goes on behind closed doors.
(*This post specifically refers to pca's I have worked with in the past.)
We can all agree that the pay scale is horrendously low for personal care assistants. These folks are being asked to perform a multitude of tasks that vary from day to day. Some of the tasks are distasteful, boring or time consuming. It is, in some respects, a job many people would not want. And nothing I write from here on in changes any of those injustices from the pca's point of view. Like many other people with disabilities, I can understand that these problems add to high turnover and poor attitude toward the job.
As a person with a disability, however, my perspective is different. I feel that even if we solved some of these problems, the way these services are being delivered is a fundamental part of the problem. I cannot tell you how often I have worked with a personal care assistant (and make no mistake about it - having one is work) and found it a frustrating experience. And this happens even when the pca has demanded - and received- extra compensation from me in order to even show up. The money is not the entire issue. Because of the way society views people with disabilities, we need to revamp the way these services are provided. This is because the current delivery of services is based on outdated beliefs that most people with disabilities are passive recipients of services.
Why do I say this? Because, in my past experience*, the majority of pca's do not treat their job as a job. They do not show up on time. They are not accountable for what they do - or do not do. This means I have to bring in another person to finish or do their work. They call their friends and family, doctors, car mechanics, etc. during the short hours I am allotted while my time is tied up waiting for them to help me. Some of them bring food and try to squeeze in a half hour of eating during my allotted hours.
This litany of rants is not to condemn pca's - although it may be taken that way . It's to highlight the fact that, along with adjusting the pay scale for pca's, we need to take a good hard look at the level of care that is being provided. I certainly support better pay and working conditions for pca's. I used to work as one for four dollars an hour years ago.
But I also want to see a dialogue started that includes our voices - those of us with disabilities who hire pca's and know the ins and outs of how to and how not to do the job. Being a pca is a service job that involves providing a service to the consumer. Too many times it is treated as if it is not about the person with a disability at all but a matter of just showing up - whenever - and writing it down on a piece of paper. We need a system where there is accountability for job performance just as there is for other jobs.
Saying these things, of course, puts me out on a limb. Any time any of us speak up about poor service from a pca, we put ourselves at risk of being the problem. We all know the drill. The agency tells us we are being unreasonable and difficult. Social workers tell us we have to make compromises. A checkmark is put next to our name on the agency list and we are told we have to find our own aides. This is what keeps many people with disabilities quiet.
Meanwhile we're looking across the room at a pca who is on our couch, watching our TV and eating Cheese Doodles. And we remain hungry, unbathed and in the same clothes we were in when she arrived.
Even considering backlash, we need to speak up about what goes on behind closed doors.
(*This post specifically refers to pca's I have worked with in the past.)
Sunday, March 18, 2007
John Hockenberry speaks out on returning Iraqi vets and health care issues for people with disabilities
How living with a disability "exposes the big lie in American health care...that investing in acute care somehow reduces the need for rehab and broad social accommodations"
Via Blogenberry
Via Blogenberry
Thursday, March 15, 2007
Sir, may I have more please?
We all know the image of Oliver standing with his empty bowl asking for more porridge because he and the other boys were so hungry and underfed. He was "elected" to go ask for more food, a task that doomed him to censure.
Asking for help when you're disabled can feel like that. Just like the image of the "charity boy" portrayed in Oliver, some people still think assistance to those of us with disabilities makes us "charity cases" . This image does not serve us well.
Many of the agencies designed to help us say they use a consumer model and would be aghast if told they are still treating people with disabilities like charity cases. But they do. I hear from people all over the country every day who report incidents of being treated like a charity case. It doesn't always emanate from the top officials in an organization or agency - although sometimes it does , often in the sense of a tacit agreement to look the other way when others do it.
I've met quite a few social workers, for example, who still adhere to the charity model. I see social workers who completely ignore communications from people with disabilities, ranging from requests for services to complaints about service and then flippantly remark "Oh he (or she) doesn't work and has nothing better to do!" to other professionals. Others make decisions on behalf of clients with disabilities as if the person has been declared incompetent, overreaching in an inappropriate way in order to save their own time and effort.
This results in either poor service to the consumer - or no service at all. I know people with disabilities who prefer not to get services rather than submit to this kind of treatment. It's dehumanizing. And when you're struggling with energy issues to get through the day, dealing with difficult people sometimes feels like too much.
So it may feel to people with disabilities that there is no recourse when this type of treatment happens to them individually. The reality is that employees who treat people this way usually do so across the board. It's not personal - although it can feel that way. As hard as it is to do, it's important to report workers who treat us this way and speak up about it.
If you're dealing with a private company or organization, go up the hierarchy. Talk to the person's manager or boss. If you don't receive any satisfaction, report them just as you would any other business.
If it's a government or public program, you can also go up the hierarchy, but also remember that taxpayers want to know how their money is being spent in these programs. Legislators trying to design programs that do more with less money want to know what services are needed and what programs work and don't work. We are in an atmosphere where change can happen if we speak up.
No one should have to beg for services that provide for one's basic needs or sustenance. We are not charity cases. Don't let the people who are paid to run these programs treat you like that.
Asking for help when you're disabled can feel like that. Just like the image of the "charity boy" portrayed in Oliver, some people still think assistance to those of us with disabilities makes us "charity cases" . This image does not serve us well.
Many of the agencies designed to help us say they use a consumer model and would be aghast if told they are still treating people with disabilities like charity cases. But they do. I hear from people all over the country every day who report incidents of being treated like a charity case. It doesn't always emanate from the top officials in an organization or agency - although sometimes it does , often in the sense of a tacit agreement to look the other way when others do it.
I've met quite a few social workers, for example, who still adhere to the charity model. I see social workers who completely ignore communications from people with disabilities, ranging from requests for services to complaints about service and then flippantly remark "Oh he (or she) doesn't work and has nothing better to do!" to other professionals. Others make decisions on behalf of clients with disabilities as if the person has been declared incompetent, overreaching in an inappropriate way in order to save their own time and effort.
This results in either poor service to the consumer - or no service at all. I know people with disabilities who prefer not to get services rather than submit to this kind of treatment. It's dehumanizing. And when you're struggling with energy issues to get through the day, dealing with difficult people sometimes feels like too much.
So it may feel to people with disabilities that there is no recourse when this type of treatment happens to them individually. The reality is that employees who treat people this way usually do so across the board. It's not personal - although it can feel that way. As hard as it is to do, it's important to report workers who treat us this way and speak up about it.
If you're dealing with a private company or organization, go up the hierarchy. Talk to the person's manager or boss. If you don't receive any satisfaction, report them just as you would any other business.
If it's a government or public program, you can also go up the hierarchy, but also remember that taxpayers want to know how their money is being spent in these programs. Legislators trying to design programs that do more with less money want to know what services are needed and what programs work and don't work. We are in an atmosphere where change can happen if we speak up.
No one should have to beg for services that provide for one's basic needs or sustenance. We are not charity cases. Don't let the people who are paid to run these programs treat you like that.
Friday, March 9, 2007
The bureaucracy of "help"
{Visual description: Man on phone at computer desk is surrounded by papers and a question mark floating over his head.}
Most of us with disabilities are all too familiar with the fact that putting any bureacracy in charge of our needs turns into disaster.
It's inevitable, to some degree, that bureaucracies exist. But the problem is that it surrounds us. It can be a full time job dealing with the very structure that's set up to help. This includes programs like Medicaid and Medicare, but also extends to social service agencies through which we get aides and hands on help, such as volunteers.
This morning I received a call from an agency which has given me no help in several years. Why? Because every time I ask for help I'm told that they either aren't available or can't assist me with what I'm asking for.
Yet I was told they would be making a visit to me. I asked why. Part of this is out of exasperation, because it's the third agency in the past week that has done this - 3 agencies which provide no help, 3 social worker types who need to visit me.
"I know you work," the woman replied. "But - you have to do this."
"Why?" I asked. I pointed out that I was not getting any help from them and, in fact, as memory served me, had not in years.
She sounded flustered. "That's not the point. You're on our list. I can take you off our list and then you won't need to have a visit."
I explained that I didn't mind being on the list, nor was I asking to be taken off, I was just pointing out that I saw no need for a visit if they weren't providing services - especially since my circumstances hadn't changed.
"If you don't want a visit, I have to take you off the list," she said.
So I'm off the list - basically because I just am too busy trying to keep body and soul together to keep up with the bureaucratic requirements of being on lists for places that offer no help.
It doesn't matter anyhow if I'm off the list because they don't give me any services.
How does this happen? This "Kafka-esque" type result can only happen when communication is one sided. When the agencies offering help use a "trickle down" model of services and don't allow consumer input, then the services are going to be useless unless you happen to need what they think you need given to you in the way they think you need it. The other problem is that many agencies have designed services as a one size fits all for seniors and disabled and that just doesn't work at all for me.
I'm often lectured by social worker types as to how this could all be solved if I would stop working. But I'm just persnickety that way. I don't see why I should quit working just to have access to a service - when the whole point is to save energy so I can work.
May I just say "Help!" Or perhaps... never mind...
Friday, March 2, 2007
Shortage of home health care aides
This NY Times article discusses the shortage in the context of elder care, not those of us with disabilities who are greatly affected. It points out how some are opting to use the gray market, hiring aides who do not work for agencies due to cost factors. It mentions how often no criminal background checks or proper training is provided to these workers.
Make no mistake about it - this is one of the most important issues facing the disabled community. Without adequate home care, many of us face institutionalization.
I am always reluctant to mix the issues of aging and disability in discussions because there is a tendency on the part of our social system to provide the same services to young people with disabilities as they do to elders, thus making it very difficult for those of us with disabilities to have the ability to participate in any meaningful work, whether it be paid or volunteer, have a social life or any kind of life.
I have experienced this in my own life and have continually struggled against being pigeonholed into the same services designed for an elderly person. For example, when I need meal assistance and someone suggests a service which requires me to be home every day at the same time to receive a meal, that literally puts me under a form of 'house arrest'. I may need the service, but because there is no program for a younger person with a disability, it doesn't work for me.
I have had home health care aides who will not provide me with times when they are coming, but the rule is I have to be home when they come. This also limits my mobility, income and lifestyle greatly. Because of the shortage and the extent of my disability, I sometimes have had to make this compromise. (My primary aide does not treat me this way but she is the exception in this area, not the rule.)
A shortage also results in less bargaining power with aides for consumers and increases abuse. If I want an aide to go to work with me, he or she may turn my hours down and take hours from someone else who requires less assistance. Aides have told me they will do "one thing" (pick from eating, being clean or getting dressed- forget opening mail or anything else)and then have sat down and watched my TV, telling me to "go ahead and work, it won't bother them". ** Some aides have demanded more and more money from consumers. I know of one aide who worked for a friend with MS. She would walk in, open my friend's wallet and take all the cash in it to "supplement" her pay.
So what about finding other kinds of help? Volunteers through social programs will come, but the programs are set up where you have to commit to the same time on the same day - every week since they are also set up for the elderly who are retired. If you're disabled , this means you have to do a workaround all of the time in order to participate in any of these programs, rather than being allowed to work out a schedule with the volunteer on a one to one basis - or give up this volunteer help, which can help supplement the shortage of aides situation.
This is a serious and growing problem for people with disabilities. We can invoke the ADA to increase our access to opportunities, but for those of us dependent on care and aides, this shortage can mean we have no way to get dressed, eat or showered - and will keep us in our homes or, worse yet, put us in institutions.
**Descriptions of these situations are to show the kinds of behavior I've seen and are not meant to imply that either I, or anyone else, should put up with it or settle for this kind of treatment because there is a shortage.
Make no mistake about it - this is one of the most important issues facing the disabled community. Without adequate home care, many of us face institutionalization.
I am always reluctant to mix the issues of aging and disability in discussions because there is a tendency on the part of our social system to provide the same services to young people with disabilities as they do to elders, thus making it very difficult for those of us with disabilities to have the ability to participate in any meaningful work, whether it be paid or volunteer, have a social life or any kind of life.
I have experienced this in my own life and have continually struggled against being pigeonholed into the same services designed for an elderly person. For example, when I need meal assistance and someone suggests a service which requires me to be home every day at the same time to receive a meal, that literally puts me under a form of 'house arrest'. I may need the service, but because there is no program for a younger person with a disability, it doesn't work for me.
I have had home health care aides who will not provide me with times when they are coming, but the rule is I have to be home when they come. This also limits my mobility, income and lifestyle greatly. Because of the shortage and the extent of my disability, I sometimes have had to make this compromise. (My primary aide does not treat me this way but she is the exception in this area, not the rule.)
A shortage also results in less bargaining power with aides for consumers and increases abuse. If I want an aide to go to work with me, he or she may turn my hours down and take hours from someone else who requires less assistance. Aides have told me they will do "one thing" (pick from eating, being clean or getting dressed- forget opening mail or anything else)and then have sat down and watched my TV, telling me to "go ahead and work, it won't bother them". ** Some aides have demanded more and more money from consumers. I know of one aide who worked for a friend with MS. She would walk in, open my friend's wallet and take all the cash in it to "supplement" her pay.
So what about finding other kinds of help? Volunteers through social programs will come, but the programs are set up where you have to commit to the same time on the same day - every week since they are also set up for the elderly who are retired. If you're disabled , this means you have to do a workaround all of the time in order to participate in any of these programs, rather than being allowed to work out a schedule with the volunteer on a one to one basis - or give up this volunteer help, which can help supplement the shortage of aides situation.
This is a serious and growing problem for people with disabilities. We can invoke the ADA to increase our access to opportunities, but for those of us dependent on care and aides, this shortage can mean we have no way to get dressed, eat or showered - and will keep us in our homes or, worse yet, put us in institutions.
**Descriptions of these situations are to show the kinds of behavior I've seen and are not meant to imply that either I, or anyone else, should put up with it or settle for this kind of treatment because there is a shortage.
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