Jennifer found the article, published on Saturday, reviewing the hearing on Friday January 25, 2008. Here is the link:
http://www.tucsoncitizen.com/daily/local/75184.php
In general, the article is a disappointment. The reporter spoke to several people at the hearing, had a great deal of paperwork, yet she wrote a neutral, information light article. Hopefully she will be at the two coming meetings and at least continue reporting the issue as still at hand, viable.
I was reminded by my usual PCA care giver visit this weekend that, although the supervisors are insisting the proposed changes are still only being discussed, the PCA pool is shrinking. The have decided to begin immediately dismantling the entire program one piece at a time. Of course, from what I can tell, they started nearly a year ago, with offering the PCAs classes to create a licensed employee set Then offered and gave many of them jobs within the county but outside of the attendant care program. At this time, they are still moving the people in the pool to other jobs, whether care giving or no. I'm worried that time passes, before a final decision has been officially announced, the system will have been deeply damaged, putting clients depending on it in poor situations.
My case manager called this morning to inform me of another agency with whom she spoke that may be an option for the future. But no guarantees yet. I appreciate the time she is putting into this, with her position and I hope they are sincere in their consideration of my well being. But I worry about her reaction to my skepticism. She is frustrated that I am not more excited or at least comforted that one or two of the agencies might be able to help support me once the attendant care program is gone. I still think the Pima Health System should have researched well before the announcement what agencies provide what and who might expand their services even further depending on the needs of clients.
Comments? Suggestions? Please feel free to leave them here. We want to know what you think, what you know, and any stories you might know. Thank you!
28 January, 2008
26 January, 2008
Here it is, the day after the first hearing. I am encouraged by the turn out, around 100 people made their presence known, including a fairly good number of clients. I'm actually surprised that many did show up, as the letters the county sent out were greatly delayed, especially the Spanish language version, which weren't sent until Monday or so. I really feel the county is being at least lazy about producing correspondence, and at the most I would call it sabotaging the clients opportunities to participate. That's my opinion, of course. But let's remember this is a population of people who have to make plans to travel, reorganize their and other peoples schedules to go out of the house. In general it seems a great deal of the communication available is word of mouth only, so of course people are ill informed and fearful of what is happening.
I was there with my Father, who, though he doesn't play a part in my care, knows the importance of this issue to not only me but also himself and my grandmother, his mom. Before the hearing began, I was introduced to Karen Fields, the Director of Pima Health System. I was told to expect very soon a written response to my statement (see earlier posts here to read it). I look forward to it and I have no idea what to expect. Stay turned. The hearing began with introductions and a Spanish translator. They followed with a brief history of the program, which began in 1989 to fill the void of provided care that agencies would not fill. (Sound familiar?) What proceeded was an abbreviated description of the proposed plan. Then about two hours of a question and answer session. Some people were satisfied with the answers to their specific questions, but many people were told, "we'll get back to you on that."
The issues I had with the meeting? For one, the county representatives are continuing to tell everyone that this is just a plan for the future, the supervisors haven't made a decision, yet, one way or the other. But I use the PCA pool every weekend and they are still transferring that staffing group, one at a time, to other, non personal care positions. What started with numbers nearing 30, are now down to 11, give or take. And many of those are out ill or injured at any given time. Second, a few reps from agencies came and spoke about hiring for attendants. But this was supposed to be a forum for client concerns, yet no one corrected these people when they got up to speak. Jobs fairs, where the agencies and attendants care interview each other, have been announced for some time in the near future. Of course, this announcement also tells me the supervisors are going ahead with the major plan or there would be no need for job fairs. Third, only one member of the media showed up, from the Tucson Citizen. She stayed for the entire hearing and interviewed several of us. The article is supposed to be out today, go get a paper or see if it's online!
But still, my on going concern is the same: of the 20 agencies (a number updated at the hearing) not one is set up to cover the care schedule I have currently. I know I am not the only client in this position. Even my county case manager called me Thursday to let me know that, as of her call, only one agency is looking promising. So, understand I am not confident in my choices. Which is why I find it amusing some well meaning people out there want to call users of these services 'consumers.' Makes feel as if I should get a credit card. I know people want me to calm down about this topic, to wait and see that everything will be alright, but I do not have that luxury. If this goes wrong, I am the one who will get hurt.
I've spend a lot of time this week making calls and emails to various groups to inform on this issue. I hope it's made some sort of impact. There are two more meetings in the near future. Here is the schedule:
Saturday Feb 9, 2008 at 10:30am. El Rio Neighborhood center, Community Center Building. 1290 W Speedway Blvd.
Wednesday March 5, 2008 at 6:30pm. TMC Senior Services at Avalon Skilled Nursing, 1st floor meeting room (formerly El Dorado Hospital)
1400 N Wilmot Road
So, see you there!
And now, dear reader, you have heard from both Jennifer and I. I hope we can fulfill our objectives in here, some where. Remember, if you have a story about how in home care has affected you, for better or worse, please let us know! Also, if you might question or information, don't hesitate to contact one of us.
I was there with my Father, who, though he doesn't play a part in my care, knows the importance of this issue to not only me but also himself and my grandmother, his mom. Before the hearing began, I was introduced to Karen Fields, the Director of Pima Health System. I was told to expect very soon a written response to my statement (see earlier posts here to read it). I look forward to it and I have no idea what to expect. Stay turned. The hearing began with introductions and a Spanish translator. They followed with a brief history of the program, which began in 1989 to fill the void of provided care that agencies would not fill. (Sound familiar?) What proceeded was an abbreviated description of the proposed plan. Then about two hours of a question and answer session. Some people were satisfied with the answers to their specific questions, but many people were told, "we'll get back to you on that."
The issues I had with the meeting? For one, the county representatives are continuing to tell everyone that this is just a plan for the future, the supervisors haven't made a decision, yet, one way or the other. But I use the PCA pool every weekend and they are still transferring that staffing group, one at a time, to other, non personal care positions. What started with numbers nearing 30, are now down to 11, give or take. And many of those are out ill or injured at any given time. Second, a few reps from agencies came and spoke about hiring for attendants. But this was supposed to be a forum for client concerns, yet no one corrected these people when they got up to speak. Jobs fairs, where the agencies and attendants care interview each other, have been announced for some time in the near future. Of course, this announcement also tells me the supervisors are going ahead with the major plan or there would be no need for job fairs. Third, only one member of the media showed up, from the Tucson Citizen. She stayed for the entire hearing and interviewed several of us. The article is supposed to be out today, go get a paper or see if it's online!
But still, my on going concern is the same: of the 20 agencies (a number updated at the hearing) not one is set up to cover the care schedule I have currently. I know I am not the only client in this position. Even my county case manager called me Thursday to let me know that, as of her call, only one agency is looking promising. So, understand I am not confident in my choices. Which is why I find it amusing some well meaning people out there want to call users of these services 'consumers.' Makes feel as if I should get a credit card. I know people want me to calm down about this topic, to wait and see that everything will be alright, but I do not have that luxury. If this goes wrong, I am the one who will get hurt.
I've spend a lot of time this week making calls and emails to various groups to inform on this issue. I hope it's made some sort of impact. There are two more meetings in the near future. Here is the schedule:
Saturday Feb 9, 2008 at 10:30am. El Rio Neighborhood center, Community Center Building. 1290 W Speedway Blvd.
Wednesday March 5, 2008 at 6:30pm. TMC Senior Services at Avalon Skilled Nursing, 1st floor meeting room (formerly El Dorado Hospital)
1400 N Wilmot Road
So, see you there!
And now, dear reader, you have heard from both Jennifer and I. I hope we can fulfill our objectives in here, some where. Remember, if you have a story about how in home care has affected you, for better or worse, please let us know! Also, if you might question or information, don't hesitate to contact one of us.
25 January, 2008
The Other Blogger... Jennifer Lewis
Here I am! Sorry it took so long to get here.
I figured it was high time I described what it is I'll be doing here. Considering the goal of this blog is to get information out there for those of us who require assistance to get by in life I figured a brief description of my needs might be appropriate. Don't worry, I won't get too specific... lol! Seriously though, I currently live with my parents, but in the past I have lived with roomates and a boyfriend. I have four Independent Home Health Aides who meet all of my physical needs. They do things ranging from personal care, to basic housekeeping, to turning me throughout the night. While my parents do assist me at times, ultimately, my aides are the ones who do the bulk of the work.
Also, I do work outside of the house, and I do have a modified van that I can drive myself. I will provide information about all of that in another blog. The reason I bring up the fact that I work is that it has recently created a complication with my attendant care, which is provided through a program associated with Medicaid here in Ohio called Waiver IV. This program is designed for individuals who are too disabled to get the basic care provided by Medicaid in the Core Benefit Package which provides up to 14 hours of care per week. Here is an pretty good link describing the differences in the various programs provided by Medicaid:
http://www.odjfs.state.oh.us/forms/file.asp?id=49362
Because I work, the State of Ohio is requiring me to start paying for my care, which works out to approximately $1200 a month. I only make approximately $1200 per month after taxes. Needless to say, it isn't really possible to pay this money. I have appealed it, and I am awaiting the results. If they still require me to pay it, I will appeal it again.
While all of this does sound quite bad, I do have a light at the end of the tunnel. In April, a "Buy-In" program is supposed to begin; however, there was notification that the program COULD be delayed another 180 days from January 24th, 2008 (surprise, surprise...). The "Buy-In" (A.K.A. the MBI-WD program) will make it so that those of us who work will not be required to pay anything for our personal care unless we make over a certain amount. I need to do a little more research on this aspect before I give any definitive amounts, but I will get back with you on this. In the meantime, I did come across these addresses as a possible sources of information for those of you who might be interested:
For Ohio specific inquiries:
Ohio Job & Family Services
30 East Broad Street
Columbus, Ohio 43215-3414
(the State Medicaid Director is John Corlett)
For general Medicaid/Medicare inquiries:
Department of Health & Human Services
Centers for Medicare & Medicaid Services
233 North Michigan Avenue, Suite 600
Chicago, Illinois 60601-5519
(I don't know the contact person in this case)
I've never contacted these departments myself, but I plan on doing so ASAP. I'll let you know what I learn.
In any event, I'm glad to meet you all! I hope Janice and I can be of help to you. Just let us know if you have any questions and if we don't know the answer we'll do our best to find out for you.
I figured it was high time I described what it is I'll be doing here. Considering the goal of this blog is to get information out there for those of us who require assistance to get by in life I figured a brief description of my needs might be appropriate. Don't worry, I won't get too specific... lol! Seriously though, I currently live with my parents, but in the past I have lived with roomates and a boyfriend. I have four Independent Home Health Aides who meet all of my physical needs. They do things ranging from personal care, to basic housekeeping, to turning me throughout the night. While my parents do assist me at times, ultimately, my aides are the ones who do the bulk of the work.
Also, I do work outside of the house, and I do have a modified van that I can drive myself. I will provide information about all of that in another blog. The reason I bring up the fact that I work is that it has recently created a complication with my attendant care, which is provided through a program associated with Medicaid here in Ohio called Waiver IV. This program is designed for individuals who are too disabled to get the basic care provided by Medicaid in the Core Benefit Package which provides up to 14 hours of care per week. Here is an pretty good link describing the differences in the various programs provided by Medicaid:
http://www.odjfs.state.oh.us/forms/file.asp?id=49362
Because I work, the State of Ohio is requiring me to start paying for my care, which works out to approximately $1200 a month. I only make approximately $1200 per month after taxes. Needless to say, it isn't really possible to pay this money. I have appealed it, and I am awaiting the results. If they still require me to pay it, I will appeal it again.
While all of this does sound quite bad, I do have a light at the end of the tunnel. In April, a "Buy-In" program is supposed to begin; however, there was notification that the program COULD be delayed another 180 days from January 24th, 2008 (surprise, surprise...). The "Buy-In" (A.K.A. the MBI-WD program) will make it so that those of us who work will not be required to pay anything for our personal care unless we make over a certain amount. I need to do a little more research on this aspect before I give any definitive amounts, but I will get back with you on this. In the meantime, I did come across these addresses as a possible sources of information for those of you who might be interested:
For Ohio specific inquiries:
Ohio Job & Family Services
30 East Broad Street
Columbus, Ohio 43215-3414
(the State Medicaid Director is John Corlett)
For general Medicaid/Medicare inquiries:
Department of Health & Human Services
Centers for Medicare & Medicaid Services
233 North Michigan Avenue, Suite 600
Chicago, Illinois 60601-5519
(I don't know the contact person in this case)
I've never contacted these departments myself, but I plan on doing so ASAP. I'll let you know what I learn.
In any event, I'm glad to meet you all! I hope Janice and I can be of help to you. Just let us know if you have any questions and if we don't know the answer we'll do our best to find out for you.
23 January, 2008
My first Press Conference
Well, I was nervous, I didn't know what I was going to experience today. My Father made arrangements to go with me, which was good. I appreciated the company and moral support. In the final total, one reporter showed up, one supervisor, 2 union reps, 2 interfaith reps, 2 clients including myself and Carolyn Trowbridge. Not the numbers I expected or hoped. Carolyn did speak for some time, though she mostly preached to the choir, except for the one reporter. I'm disappointed that so few members of the media bothered to show up. My Father mentioned near the end that this is in fact at national issue, we all grow old or infirm and we all know people who, in some way, need assistance. I was flattered that Carolyn handed out copies of my statement to whomever would take one. I hope they went to good homes and are read, once or thrice.
The first hearing is on Friday. I assume the participation will be greater. I am concerned, however, that the letters sent out to clients were too delayed for many to make arrangements for transportation. And I cannot help thinking that the Administration was not really in a hurry to get those letters out. They really just don't understand how or why this is important.
I was informed by someone involved in this debate that one major suggestion would be for the county to secure and rebuild the PCA pool. The PCA pool has worked up to now as a strong back up care giver system, which is one of the great failings of the outside agencies. That plan implemented would ease my mind a great deal. However, I have trouble, in general, not seeing the long term affects of all this. I am a long term client; I need to know that my care will be maintained, consistent and complete.
We'll see how the meeting goes on Friday. More updates soon.
The first hearing is on Friday. I assume the participation will be greater. I am concerned, however, that the letters sent out to clients were too delayed for many to make arrangements for transportation. And I cannot help thinking that the Administration was not really in a hurry to get those letters out. They really just don't understand how or why this is important.
I was informed by someone involved in this debate that one major suggestion would be for the county to secure and rebuild the PCA pool. The PCA pool has worked up to now as a strong back up care giver system, which is one of the great failings of the outside agencies. That plan implemented would ease my mind a great deal. However, I have trouble, in general, not seeing the long term affects of all this. I am a long term client; I need to know that my care will be maintained, consistent and complete.
We'll see how the meeting goes on Friday. More updates soon.
22 January, 2008
Here's a reminder that tomorrow is the press conference at the Old Pima County Court Building, at 115 N. Church Ave, at 10:00am. See the flyer below for more information. Or contact us! See you there!
On to other business. Over the weekend, I received the first letter from the county, concerning changes in my care, that I have ever seen. It was vague, of course, and I imagine they wrote it under duress. They, the administration making these choices, still don't think there is a problem. Yet even my case manager confirmed for me on Friday, at our face to face 90-day review, that not one of the 19 agencies on the list can, at this time, cover my needs and provide the care I currently receive. And even she is counseling me to be patient and wait to see what happens. How can I do that? If I wait till it's all over and it goes badly, the only person who will suffer is me. For everyone else, it's a 9 to 5 job and they get to go home, be done with it and say "oops, sorry about that."
As for the project, it is slow but sure. Still need to get this out there to more people with stories to tell. Another part of the plan is to do a bit of research at the library. Online, there really isn't a great deal of information to be had. So, we are going to do a division of labor. Jennifer is attempting to find information concerning the Midwest and I will see what I can find on the Southwest. We're hoping to find enough to compare the various states and how each handles, or not, the issue and implementation of in home assistance for clients who don't need 24 hour care.
Enough for now, see you tomorrow!
On to other business. Over the weekend, I received the first letter from the county, concerning changes in my care, that I have ever seen. It was vague, of course, and I imagine they wrote it under duress. They, the administration making these choices, still don't think there is a problem. Yet even my case manager confirmed for me on Friday, at our face to face 90-day review, that not one of the 19 agencies on the list can, at this time, cover my needs and provide the care I currently receive. And even she is counseling me to be patient and wait to see what happens. How can I do that? If I wait till it's all over and it goes badly, the only person who will suffer is me. For everyone else, it's a 9 to 5 job and they get to go home, be done with it and say "oops, sorry about that."
As for the project, it is slow but sure. Still need to get this out there to more people with stories to tell. Another part of the plan is to do a bit of research at the library. Online, there really isn't a great deal of information to be had. So, we are going to do a division of labor. Jennifer is attempting to find information concerning the Midwest and I will see what I can find on the Southwest. We're hoping to find enough to compare the various states and how each handles, or not, the issue and implementation of in home assistance for clients who don't need 24 hour care.
Enough for now, see you tomorrow!
20 January, 2008
I've sent a letter out to a great number of the people involved with the County concerning the Attendant Care Program. Here is for your reading pleasure:
Now you know what impetus lies behind starting this blog. But what has worried me the most in this is some of the wildly diverse reactions coming out.
The first press I read concerning the privatization of the attendant care had to do with the employees being affected, but very little about the clients they serve. Everyone is worried about their jobs, of course. But I can't help thinking that, really, they can get jobs anywhere if something goes wrong. They don't have to be attendants, they could find other employment, if it comes down to it. But clients don't have any choice about being taken care of. It's not like I can just get up and walk if someone doesn't show up. Many of the care givers are delighted by the changes because they have the potential to make more money. And good for them. But there has been very little, if any, discussion concerning the quality of care potential or loss for the clients. I've heard of a few who just don't give a damn about how this might affect clients, the very people they supposedly take care of. I suppose they figure it's someone else's problem.
The trouble is, I think, that it really is looked at as just as job. Few understand that the 'job' they are doing affects another person's life. And finally I get to my point...
I want to start a project that will show how important daily living care is to the people who use it. There are a great number of misconceptions that need to be repaired. Assumptions need to be changed.
If you're reading this and you have a story to tell about in home care; good, bad, ugly, whatever, please feel free to share. I would like to collect anecdotes as examples of how daily living assistance has made your life easier or more difficult. Has it helped you keep a job? Has it made you lose a job? A spouse? or family members? How have your benefits or insurance been affected?
If you don't want to post them here as comments, feel free to send it to the email connected to this blog. And let me know if you want to remain anonymous or no.
Well, I suppose I've broken this thing in, so more later.
I am writing in response to the Pima County Supervisors meeting held December 17, 2007. That meeting focused in part on the dismantling of the Pima County Attendant Care Program and attached Personal Care Attendant Pool. I was present at the meeting and feel it absolutely necessary to inform and expand on the items mentioned therein. I found that the Supervisors are less informed and concerned than they ought to be on an issue that impacts the lives of so many citizens in such a profound way.
I am also deeply concerned about the manner in which I found out about the changes being discussed by the Pima County Supervisors. I was not nor have I ever been notified in any way about changes pending in my care. As a client, completely dependent on the program provided by the county, I feel that I should have some say in any modification made to my life supposedly on my behalf. Why would the decision makers of
Pima County HAS met my needs, until now. I worry that the
Janice A. Wallace
Client, Pima Attendant Care Program
Now you know what impetus lies behind starting this blog. But what has worried me the most in this is some of the wildly diverse reactions coming out.
The first press I read concerning the privatization of the attendant care had to do with the employees being affected, but very little about the clients they serve. Everyone is worried about their jobs, of course. But I can't help thinking that, really, they can get jobs anywhere if something goes wrong. They don't have to be attendants, they could find other employment, if it comes down to it. But clients don't have any choice about being taken care of. It's not like I can just get up and walk if someone doesn't show up. Many of the care givers are delighted by the changes because they have the potential to make more money. And good for them. But there has been very little, if any, discussion concerning the quality of care potential or loss for the clients. I've heard of a few who just don't give a damn about how this might affect clients, the very people they supposedly take care of. I suppose they figure it's someone else's problem.
The trouble is, I think, that it really is looked at as just as job. Few understand that the 'job' they are doing affects another person's life. And finally I get to my point...
I want to start a project that will show how important daily living care is to the people who use it. There are a great number of misconceptions that need to be repaired. Assumptions need to be changed.
If you're reading this and you have a story to tell about in home care; good, bad, ugly, whatever, please feel free to share. I would like to collect anecdotes as examples of how daily living assistance has made your life easier or more difficult. Has it helped you keep a job? Has it made you lose a job? A spouse? or family members? How have your benefits or insurance been affected?
If you don't want to post them here as comments, feel free to send it to the email connected to this blog. And let me know if you want to remain anonymous or no.
Well, I suppose I've broken this thing in, so more later.
18 January, 2008
A spark into a fire
It's time to discuss as issue that has always been a part of my life, all 38 years of it. I was born with Spinal Muscular Atrophy stage 2 and have used an electric wheelchair for 26 years. I've spent my entire life striving to be as independent as physically possible. It's exhausting and completely worth it.
For my adult life I have been able to live autonomously, depending on a schedule of caregivers who come to my home 3 times a day, 7 days a week, for short but vital time periods. I have lived in Tucson, Arizona for nearly 13 years and received my care through Pima County Health. The care has been good and it's been consistent. Until now.
The County Administrator has decided to dismantle the Attendant Care Program and transfer the 500 clients in the system to outside private agencies who are contracted with the county. But there is one major flaw: none of the agencies supply the same level of service that I currently receive. So the fight has begun to either fortify the Program currently in place or guarantee that the agencies will adapt to the needs of the clients being transfered.
There are several groups mobilizing to make sure that all the clients in the system will continue to receive their care. I've written a letter of concern and sent it out to a number of people involved. The county as called 3 meetings to occur over the next 3 months, to collect feed back, suggestions, and concerns. I hope it's enough. Here is a flyer that is being distributed to advertise the meeting times and locations:
My plan is to be at every meeting. See you all there.
For my adult life I have been able to live autonomously, depending on a schedule of caregivers who come to my home 3 times a day, 7 days a week, for short but vital time periods. I have lived in Tucson, Arizona for nearly 13 years and received my care through Pima County Health. The care has been good and it's been consistent. Until now.
The County Administrator has decided to dismantle the Attendant Care Program and transfer the 500 clients in the system to outside private agencies who are contracted with the county. But there is one major flaw: none of the agencies supply the same level of service that I currently receive. So the fight has begun to either fortify the Program currently in place or guarantee that the agencies will adapt to the needs of the clients being transfered.
There are several groups mobilizing to make sure that all the clients in the system will continue to receive their care. I've written a letter of concern and sent it out to a number of people involved. The county as called 3 meetings to occur over the next 3 months, to collect feed back, suggestions, and concerns. I hope it's enough. Here is a flyer that is being distributed to advertise the meeting times and locations:
My plan is to be at every meeting. See you all there.
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