PAS: What Every Person with a Disability Thinks About and Plans For
Imagine a typical morning. You wake up to the music (or buzzing) of your alarm clock radio. Sunlight streams through the window blinds, or you can tell it's cloudy because of the dark gray light creeps through the slats. You take a few minutes to reflect on the day ahead. It's time to get up. But if your personal care attendant is late or doesn't show up at all, the individual care apparatus hits a huge snag. Disability time is a lot longer than everyday time. Provide you can move at all, it will take quite a while to get from point A to Point B. Otherwise, you're stuck until someone comes. Not fun if you have to go to the bathroom urgently. You're late for work, or have to take the day off. And that slows down your life, not to mention increases the risk of pressure sores. And it's wrong and unfair!
Everyone with a significant disability thinks about personal care attendant issues. Even though it's a highly personal matter, so many of us in the disability community would benefit from frank sharing with each other on this issue. Don't worry at all about being embarrassed. Helping each other is the important thing. Sadly, my local ILC has apparently dropped their PAS support groups and "meet and greets" with PCAs and people who work with them. These meetings would have been useful.
Each state has different policies and programs regarding PAS, and there are not enough services to go around-either in accessible housing or PAS. Finding the best independent living solution requires thorough planning and research, and that can take years and lots of practice. I've collected many names, addresses and contacts. Most helpful are the Center for PAS Web site: http://www.pascenter.org, the National Council on Independent Living: www.ncil.org, http://www.vasilc.org/, and the American Network of Community Options and Resources: http://www.ancor.org/ and its companion Web site, www.YouNeedToKnowMe.org. ANCOR is the professional association for PCAs and other direct-care workers. They don't get paid enough, and there is frequent turnover. Direct Support Professionals Fairness and Security Act of 2007 (Introduced in House) HR 1279 IH: http://thomas.loc.gov/cgi-bin/thomas.
Logical places to start are the local independent living center and your local vocational rehabilitation office. (Unfortunately, too many people in the disability community are unimpressed with the people working as PCAs, at least as found on ILC rosters. "Don't go with those people!" is a familiar refrain.) But what else are we supposed to do? We with disabilities are "those people."
The Virginia Department of Rehabilitative Services offers a PAS program with various options that is administered by my local independent living center. The funding is limited, and at least 200 people (most likely more) are currently on the waiting list. It's never too soon to be placed on that list.
Close friends and I talk about attendant services a lot. In the world of PAS, one size most definitely does not fit all. For example, one friend is on his own, with help from his brothers and sisters scattered around the region, constantly in touch by phone. A group of trusted local friends always watches his back, lending a helping hand when needed. He learned a lot over the years by trial and error. Another friend still lives with family, but has learned to manage PCAs herself. So many of us have similar, yet different, stories.
My aunt and I have had frequent and long talks about PAS. Recently I reminded her that no one can afford to wait until a week before scheduled surgery, additional medical happenings, emergency out-of-town trips and so on to find qualified PCAs. Hiring a PCA for a family member is an option, but one to be considered and discussed carefully. It may take years to change opinions and viewpoints. It's one of the things in life that are difficult to talk about, but it must be done.
My PAS plan centers on doing as much as I can for myself, adding independence skills on top of my at-home workday as much as possible, but it is frustrating at times. Now that our home is accessible, much more is possible. I ask about how various things work around the house, do laundry, hang up my clothes (good to have them all in one place), and load the dishwasher. Slowly I'm learning to cook-recently I learned to use the salad spinner. Some movements are harder than others. Eventually I will prepare a complete, balanced meal with no assistance. We've spent enough time in the kitchen where I know how to do most things, but utensils can be tricky and heavy. Processes can be terribly slow. Independence in the bathroom is impossible, and transfers are impossible without help. Improving physically is a slow process.
Another family member (and a neighbor) recently asked whom she designated to assist me when she was no longer here. My aunt replied that it was entirely up to me, and that I would have to hire someone. So I keep collecting and reading. To find things out, you have to ask people. Never think those questions are stupid-you're the one who must ask them in order to direct your own future. It may be a better set-up to have a PCA/roommate, even though total independence was always the goal. For others, people coming in once or twice each day will suffice. Every room should have reachers. These are available in many stores and catalogues.
Many experiences have been and are positive, but I've heard my share of horror stories. It's common advice to hire people you trust, but I have major trust issues. Even though you listen to and heed your gut (It will never steer you in the wrong direction), wariness and discernment are valuable attributes. Look people in the eye, and speak confidently and courteously. If a potential PCA is pushy, rude and doesn't listen to what you say, it's not a good fit. Know what and how to ask questions of references. Know your responsibilities and obligations as an employer under your specific program and under current tax laws.
The best wisdom I can offer from limited experience is this: You won't have the same person helping you all the time. Most PCAs last less than a year, and there is quite a revolving door. You are responsible for managing your own life and things. Don't ask anyone else to manage what you can do yourself. Set appropriate and necessary boundaries. But at the same time, be realistic about your abilities and accept help where needed. Respect the person's time and be organized and prepared. Giving clear, precise instructions is a must. Have at least two backups and a spreadsheet or calendar to track hours and schedules. Most of all, never think of these folks as just people there to help you. Be respectful and friendly. They can grow into supportive friends with the right attitude, nurturing and approach.
I would love to hear from others about their PAS experiences. Please post a comment on the blog if you'd like. The following article I wrote on PAS was originally published in Mainstream magazine in 1998 and grew out of a graduate school project. It still has a life on the Web in the September 2001 Bridges newsletter. Here's the link to paste in your browser: http://64.233.167.104/search?q=cache:jcSeFN76oc8J:www.advocacycenter.com/admin/pdf/
sept%2520bridge%252001.pdf+%22Carrie+Smoot%22&hl=en&ct=clnk&cd=58&gl=us. You'll have to scroll down to see it. I hope it is still useful.
PAS in the Workplace
The last day that I went anywhere alone was July 14, 2002. I went into downtown DC to conduct an interview for a magazine article I was writing about local foreign language classes. I finished the interview, found a restroom and then got in trouble-again.
I had pulled up my clothes, but I couldn't get up off the floor to get back in my wheelchair. I didn't have the strength. There wasn't any pain or tears this time, just resignation and embarrassment. Luckily, a security guard helped me. I knew my days of roaming the DC area by myself by bus and subway were essentially over unless I could lose weight and get my health back. Just the week before, citing liability issues, my local library (my home away from home) asked if there was technology or accommodation they could provide to prevent my falls in the restroom. Since there was nothing anyone could do, I said I would bring someone to help me. My aunt has accompanied me most times anywhere since then, at scheduled times, which has worked pretty well, although sometimes I feel hemmed in. I very much want to handle myself independently again. I exercise, try to eat properly, and continue to practice independent transfers. Sometimes progress feels like it's ground to a halt. But you can't worry over past mistakes-it's important to go forward from where you are and work hard to improve. Although I have done well working at home, sometimes it's still hard to ignore full-time opportunities I see in my inbox. I hit the delete button quickly.
My physical problems began while I still worked full time and was always going full tilt, completely ignoring my disability. The troubles began slowly, over time, until one day I couldn't manage by myself anymore. I took myself out of the traditional workforce. No office mates, no matter how supportive, will be willing to assist anyone regularly with that. It's embarrassing and difficult for the person as well.
The person with a disability is responsible for hiring a workplace PCA. Workplace PAS also involves the adjustment or trading of duties, moving things around in the office for easier access, hiring sign language interpreters, etc. The Job Accommodation Network does a great job of giving examples in workplace PAS situations: http://www.jan.wvu.edu/media/PAS.html. There is no easy answer, but you have to keep trying.
Everyone with a significant disability thinks about personal care attendant issues. Even though it's a highly personal matter, so many of us in the disability community would benefit from frank sharing with each other on this issue. Don't worry at all about being embarrassed. Helping each other is the important thing. Sadly, my local ILC has apparently dropped their PAS support groups and "meet and greets" with PCAs and people who work with them. These meetings would have been useful.
Each state has different policies and programs regarding PAS, and there are not enough services to go around-either in accessible housing or PAS. Finding the best independent living solution requires thorough planning and research, and that can take years and lots of practice. I've collected many names, addresses and contacts. Most helpful are the Center for PAS Web site: http://www.pascenter.org, the National Council on Independent Living: www.ncil.org, http://www.vasilc.org/, and the American Network of Community Options and Resources: http://www.ancor.org/ and its companion Web site, www.YouNeedToKnowMe.org. ANCOR is the professional association for PCAs and other direct-care workers. They don't get paid enough, and there is frequent turnover. Direct Support Professionals Fairness and Security Act of 2007 (Introduced in House) HR 1279 IH: http://thomas.loc.gov/cgi-bin/thomas.
Logical places to start are the local independent living center and your local vocational rehabilitation office. (Unfortunately, too many people in the disability community are unimpressed with the people working as PCAs, at least as found on ILC rosters. "Don't go with those people!" is a familiar refrain.) But what else are we supposed to do? We with disabilities are "those people."
The Virginia Department of Rehabilitative Services offers a PAS program with various options that is administered by my local independent living center. The funding is limited, and at least 200 people (most likely more) are currently on the waiting list. It's never too soon to be placed on that list.
Close friends and I talk about attendant services a lot. In the world of PAS, one size most definitely does not fit all. For example, one friend is on his own, with help from his brothers and sisters scattered around the region, constantly in touch by phone. A group of trusted local friends always watches his back, lending a helping hand when needed. He learned a lot over the years by trial and error. Another friend still lives with family, but has learned to manage PCAs herself. So many of us have similar, yet different, stories.
My aunt and I have had frequent and long talks about PAS. Recently I reminded her that no one can afford to wait until a week before scheduled surgery, additional medical happenings, emergency out-of-town trips and so on to find qualified PCAs. Hiring a PCA for a family member is an option, but one to be considered and discussed carefully. It may take years to change opinions and viewpoints. It's one of the things in life that are difficult to talk about, but it must be done.
My PAS plan centers on doing as much as I can for myself, adding independence skills on top of my at-home workday as much as possible, but it is frustrating at times. Now that our home is accessible, much more is possible. I ask about how various things work around the house, do laundry, hang up my clothes (good to have them all in one place), and load the dishwasher. Slowly I'm learning to cook-recently I learned to use the salad spinner. Some movements are harder than others. Eventually I will prepare a complete, balanced meal with no assistance. We've spent enough time in the kitchen where I know how to do most things, but utensils can be tricky and heavy. Processes can be terribly slow. Independence in the bathroom is impossible, and transfers are impossible without help. Improving physically is a slow process.
Another family member (and a neighbor) recently asked whom she designated to assist me when she was no longer here. My aunt replied that it was entirely up to me, and that I would have to hire someone. So I keep collecting and reading. To find things out, you have to ask people. Never think those questions are stupid-you're the one who must ask them in order to direct your own future. It may be a better set-up to have a PCA/roommate, even though total independence was always the goal. For others, people coming in once or twice each day will suffice. Every room should have reachers. These are available in many stores and catalogues.
Many experiences have been and are positive, but I've heard my share of horror stories. It's common advice to hire people you trust, but I have major trust issues. Even though you listen to and heed your gut (It will never steer you in the wrong direction), wariness and discernment are valuable attributes. Look people in the eye, and speak confidently and courteously. If a potential PCA is pushy, rude and doesn't listen to what you say, it's not a good fit. Know what and how to ask questions of references. Know your responsibilities and obligations as an employer under your specific program and under current tax laws.
The best wisdom I can offer from limited experience is this: You won't have the same person helping you all the time. Most PCAs last less than a year, and there is quite a revolving door. You are responsible for managing your own life and things. Don't ask anyone else to manage what you can do yourself. Set appropriate and necessary boundaries. But at the same time, be realistic about your abilities and accept help where needed. Respect the person's time and be organized and prepared. Giving clear, precise instructions is a must. Have at least two backups and a spreadsheet or calendar to track hours and schedules. Most of all, never think of these folks as just people there to help you. Be respectful and friendly. They can grow into supportive friends with the right attitude, nurturing and approach.
I would love to hear from others about their PAS experiences. Please post a comment on the blog if you'd like. The following article I wrote on PAS was originally published in Mainstream magazine in 1998 and grew out of a graduate school project. It still has a life on the Web in the September 2001 Bridges newsletter. Here's the link to paste in your browser: http://64.233.167.104/search?q=cache:jcSeFN76oc8J:www.advocacycenter.com/admin/pdf/
sept%2520bridge%252001.pdf+%22Carrie+Smoot%22&hl=en&ct=clnk&cd=58&gl=us. You'll have to scroll down to see it. I hope it is still useful.
PAS in the Workplace
The last day that I went anywhere alone was July 14, 2002. I went into downtown DC to conduct an interview for a magazine article I was writing about local foreign language classes. I finished the interview, found a restroom and then got in trouble-again.
I had pulled up my clothes, but I couldn't get up off the floor to get back in my wheelchair. I didn't have the strength. There wasn't any pain or tears this time, just resignation and embarrassment. Luckily, a security guard helped me. I knew my days of roaming the DC area by myself by bus and subway were essentially over unless I could lose weight and get my health back. Just the week before, citing liability issues, my local library (my home away from home) asked if there was technology or accommodation they could provide to prevent my falls in the restroom. Since there was nothing anyone could do, I said I would bring someone to help me. My aunt has accompanied me most times anywhere since then, at scheduled times, which has worked pretty well, although sometimes I feel hemmed in. I very much want to handle myself independently again. I exercise, try to eat properly, and continue to practice independent transfers. Sometimes progress feels like it's ground to a halt. But you can't worry over past mistakes-it's important to go forward from where you are and work hard to improve. Although I have done well working at home, sometimes it's still hard to ignore full-time opportunities I see in my inbox. I hit the delete button quickly.
My physical problems began while I still worked full time and was always going full tilt, completely ignoring my disability. The troubles began slowly, over time, until one day I couldn't manage by myself anymore. I took myself out of the traditional workforce. No office mates, no matter how supportive, will be willing to assist anyone regularly with that. It's embarrassing and difficult for the person as well.
The person with a disability is responsible for hiring a workplace PCA. Workplace PAS also involves the adjustment or trading of duties, moving things around in the office for easier access, hiring sign language interpreters, etc. The Job Accommodation Network does a great job of giving examples in workplace PAS situations: http://www.jan.wvu.edu/media/PAS.html. There is no easy answer, but you have to keep trying.
posted by Carrie | 9:09 PM
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