Long absence, Some accomplished.

I know it's been awhile since I included any updates here. It doesn't mean there's been nothing going on concerning the Attendant Care Program. The program is currently on hold. And at this time, the county, meaning Chuck Huckleberry, has announced that he will revisit the issue in July 2009, which is the next financial cycle. Beginning this week, I am apart of a Task force designed to work toward saving, revitalizing and optimizing what is left of the Program that Huckleberry has worked hard to shut down.

In recent months I have had to reorganize my home health care givers. As a result, I am no longer enrolled in the Attendant Care Program. Because the Program has been cut and is now on hold, I could not be matched with a new Attendant as they stopped hiring some time ago. Thus, I have been forced to receive my care from one of the agencies that I have been reluctant about. So far, I have been lucky and have two very good, reliable people coming into my home to care for my personal needs. I have head many horror stories to the contrary concerning other clients in the system, however.

My main concern, as it has been from the start, has been the availability of some sort of backup. I had that while in the system, but now I can no longer avail myself of that backup caregiver pool. All I know of most private agencies, as well as my own, is that in general the office staff is the available backup. Most do not keep a backup pool of people for emergencies. As someone who depends on reliable, skilled daily care, it does not make me feel safe. It feels more like private companies making do and cost cutting. We shall see.

As for the meeting his week, the first step will be to get a letter out there to make sure all of those involved know that we have not given up on the program. In addition to reestablishing the backup system, there is also the hope of making available once again the training programs once taught by the county for the use of private caregivers as well as county employees for better caring for those with physical needs.

It's a start, anyway. I will be making more posts here in the future. This is an issue important for not just people needing services but for the people who will need services someday in the future. Everyone needs to be taken care, eventually. All of us.

Health Department meeting today

I was invited to the Pima County Health Department meeting this afternoon. Apparently, they were asked to make a recommendation for the Supervisors concerning the report, now complete and well over due, from Pima Health System about the Attendant Care Program Proposal. This is the information they should have had ready for the Supervisors back in December, when this issue originally started. So the PHS representative, Robin Gwortz, presented the information in the big pretty binder. It sounded well organized and well studied, and convinced too many members of the board today that the county knows what is best and should be supported in all its endeavors. When Carolyn Trowbridge was given time to present the other side, she was basically dismissed because she was delayed in presenting her paperwork. Even though she mentioned all the deceptions, lies, missing information, cover ups and general disregard shown to the supervisors and all affected by the prospective changes, most of the members seemed bored. Basically, because she didn't have a big pretty binder available for the membership to read in the last week, they implied everything she stated was hearsay and general misinformation. Really, it was disgusting how they treated her and our concerns. And she also pointed out none of them made any appearances at any of the meetings when one of them had the nerve to criticize the public meetings and what he felt was the low number of client turnout. It really never occurred to him that clients were disadvantaged in many ways in regard to the meetings: we were only minimally informed of the meetings and some clients are going to have trouble getting to said meetings. But he saw it as only a lack of concern and problems, again confirming that those of us against the change are overreacting and general trouble makers.

Those who voted for it made their decisions solely on the PHS report. In the end, they voted 3 against and 4 for to recommend the report and its findings to the Supervisors as acceptable.

Now, they only thing we are waiting for is the supervisors' vote. As far as we know at this time, from the meetings with Pima County Interfaith Council and Carolyn Trowbridge, the Supervisors have relayed they are generally against the PHS proposition and most have stated they are planning to vote against it. Which would mean they would have to replace and reestablish what has been dismantled. Chairman Elias was unable to attend the meeting today due to family issues, but his assistant was there and he spoke to confirm that at least Chairman Elias is still very unhappy with the proposal. It didn't seem to make much different today, but at least we have some hope for the near future.

We shall see.

I am not sure of the date when the Supervisors meeting and vote at this time, but I will let you know when I do.

I would love to see the county forced to reestablish everything they have taken apart in the last few months;, the last year, really. I want to know that they are stopped in their tracks. I want to see them have to explain why they still think its okay to walk over the interests of so many for so little. I want to see consequences.

Getting ready for the PCIC seminar was a great deal more work than I thought it would be. The night before, they asked those of us speaking at the opening morning to meet at the hall for a run through. So, there I was suddenly on the spot. I HAD to speak. Had to. They sat us at a table and we waited for the signal and one at a time we read our stories into the mic, to the others there for the run through. And it wasn't as bad a I thought it would be, as scared as I was. My story is, of course, about the attendant Care Program and how I depend on others to get through my day, every day.

The next morning, April 4th, we gathered at Temple Emanu-El, at 8:00am. There was coffee and little muffins to snack on. And the real crowd was big and full of important people, those from the various churches and the government both. And at 9:00am they called on those of us asked to tell our stories. There were six of us with different life stories to tell. Everyone was very nervous and everyone did well. And then it was over. We sat at out table and drank coffee and listened to the morning speeches, numbers, and statistics. It was basically a morning of people being called upon to really, truly get some things done. To see that all the various issues are made obvious and known, as that their importance is made well known.

So, now we wait to find out how much we got started. The goal was to get individuals and groups organized into making changes in the issues presented and to find out what issues are considered more important. There are a lot of things the PCIC wants to be involved with, including immigration, child care, job training, education, and elder & disablilty care, which includes the attendant care program issue. In general though, they want to generate a greater respect for all those groups. The people in those groups tend to be the invisible and disregarded.

So we wait. Any comments or suggestions? Let me know, it's all appreciated.

Forgive my delinquency, but I've been side lined by a severe respiratory infection for over a week now. Breathing is underrated.

As for the article I spoke of last time, it was a disappointment. First of all, the reporter I was told wanted to interview me didn't even show up. Only the photographer arrived and he had no idea hat was going on or what sort of images were wanted for the article. As My attendant and I were requested to be available at the same time, we staged a few poses of him taking off my shoes. And still, the only thing that was published even remotely related to our issue was an article regarding the attendant union, Service Employees International, and its dealings with Pima Health System. No mention was made of the clients, of course. I have no idea if the reporter or her editor had more to do with the final product. And I have also not heard whether there might be a future article of some sort.


It's another media disaster. As far as I can tell, the media refuses to publish even a small part of the information concerning the clients and the closing of the attendant care program. They continue to show regard for the attendants who may lose jobs or get transferred, but no concern at all for the clients who WILL be affected. It's difficult not to feel invisible.

In other parts, I have been asked to participate with the Pima County Interfaith Council's 2008 Community Summit. It's scheduled for this coming weekend, April 4th and 5th. They are holding several workshops on many different topics, including the attendant care program issue. They've asked me, my attendant Jerry, and several members of the union to attend. Apparently we will have about 90 seconds to speak, so I will have a little something written by than. Wish me luck.

I'll be back here again soon and let you know how it goes.

I was asked Friday afternoon to participate in an interview and photo shoot for the Tucson Daily Star. They are putting together an article about our issue, the Attendant Care Program closure. On Friday, the reporter had interviewed the staff of the Union and a small number of attendants. In asking me, they also wanted my care giver Jerry present. As he is also the Vice President of the union, they hope use the two of us an example of what is at stake. I was nervous but prepared. This morning, only the photographer arrived, along with Carolyn Trowbridge to make sure it all went well. Apparently the reporter felt she did not need my input. Jerry had been questioned at the union on Friday. But we did what we could, putting together a few posed pictures of how he helps me with my daily care. I printed out a copy of my letter, the revised version sent to Alan Shaffer, for the reading pleasure of the reporter. I hope she has read it.

So, Tuesday morning, there will be some sort of article in the Tucson Daily Star. I have no idea how it will turn out but I hope for the best.

Let me know what you think.

Saturday I was invited to a meeting of the Pima County Interfaith Council (PCIC). They have been a major player in fighting to stop the Supervisors from dismantling the attendant care program and leaving the clients and care workers in the lurch. They've been in meetings with the supervisors one at a time to discuss the whys, whos and whens of the proposal. So far, as I have been told, 3 of the 5 supervisors are planning to vote against the changes. After all the lies and the misinformation the administrator and his PHS staff have been found to perpetuate, I can only assume the supervisors at least will ensure the county better organizes and prepares for client care.
I like how the PCIC handles the several issues they are intending to support. One of the subjects they mentioned was the coming statewide shortage of care givers in relation to the growing numbers of people in need of personal care services. In relation to the Attendant Care Program concern, it seems to be a small part of the whole issue. The PCIC also discussed immigration policy and employment. It seems not enough people here want to be care givers, is there some way to connect those concerns? As often as we are told people who some to this country are only drains on our systems, we cannot deny the numbers who genuinely come here to work and have a better life. They also discussed the fragile status of a local after school program and the affects possible closures as such affects families who depend on them. One person commented that she does, in fact, know several people who DO use the services of that particular program.
Things are all connected.
So, I digress. The purpose of the PCIC meeting last Saturday was preparation for a seminar they are organizing for the end of this week, to introduce more of their membership to the main points and get more input and plans for reaching their goals.
I understand the County Supervisors are at this time reviewing the collected information and will be making a decision sometime mid April.

Last night was the final of the three hearings discussing the Pima County Attendant Care Program. The turnout was good but not great; perhaps 50 people were there. But this third meeting also reflected more organized, as well as informed, questions and statements from the participants. Once again, it was Robin Gwozdz and Karen Fields to answer questions. More than one speaker stated that we are being humored with the meetings, being unable to shake the feeling the so called proposal has already been initiated. One speaker in particular, a lawyer with a son in the program, asked several pointed questions concerning who, in fact, began all of this, why a system that works is being dismantled, and what the supposed monetary savings might be for the county. Others restated concerns that the quality of care for clients will decline and that the policing of the independent agencies will be more difficult. I am still concerned that attention is being overly focused on the attendants job issues and the real probability that the quality of client care will deteriorate is being deliberately neglected.

And so now the information being collected will be sorted and organized, then passed on to the Supervisors. I understand that by the end of the month, they will be making a decision.

There is still work that can be done. We were given a short contact list, possible ways to make more comments and suggestions. They are as follows:


Phone: Attendant Care program information line 243-8055
Fax: comments may be faced to 243-8453
Email: send comments to attcare@pimahealthsystem.org


Use them all, use them well, use them often. Let the Supervisors know that the decision they are contemplating affects peoples' lives and well being.

Keep an eye here, I will post as much as I can when information is available.

Sorry about the time passing from when last I wrote here. I had a birthday and some out of state family in for a bit. So let me try to review what happened at that Interfaith meeting last week.

I was nervous and had no idea what to expect. I was joined at the meeting by a friend of mine, two members of the Union, with whom I traveled there, another client and her companion, and an older gentleman. When I arrived, I saw signs directing us to an Elder Care Meeting; no specific mention of Pima Home Health. Apparently we were one of many presenters of various topics. Our group was the first up to the microphone and several of us spoke in the assembly, but I was not one of them. I did speak in the smaller group discussions after the presentations. There were two other speakers, doctors of gerontology, one who works in mental health and another working in nursing home care.

During the small group discussions, a gentleman joined our group to ask more information and details. I spoke to him about the dismantling of the PCA Pool and how it will affect clients. Later, he introduced himself as the leader of the Interfaith council and spoke to the assembly about his opinion on the matter. He stated that he sees a great lack of responsibility on the part of churches, as Christians they should be honoring the elders and caring for the less fortunate. I am paraphrasing, of course, but he finished by stating that these are the whole point of churches and if they cannot follow through on these things, then they are no better then cults and should be shut down. The audience gasped. I like him, a lot.

No one else spoke and the meeting was closed. A small group applauded us as we left. I haven't heard anything else on the outcome of the Interfaith meeting or the general issue at hand. The next hearing is next week, March 5, at 6:30.

We shall see.

diving in

I've been asked to speak in front of the Tucson Inter faith council tonight, at 7:00pm at St Phillips in the Hills. They've been a huge part of advocating during the last few months for the clients of PHS. I have no idea how many people will be there or for how long they want me to speak. I am terrified of public speaking and honestly don't know how this will go. But needs to be done. I think all I can do is reiterate my letter and perhaps add a few more thoughts that have surfaced since I sent it out. I am also going to write some notes so I have something in my hands and elsewhere to look besides a room full of people I do not know. My confidence might, too, be diminished because I have to go in my manual chair instead of my electric, which for me means less control. But I could not find another source of transportation on such short notice.

Other than the speaking engagement, there hasn't been much news. Most things are waiting for the final public hearing and some response from the County Supervisors.

I'll write again when I recover from tonights meeting.

Wish me luck and serenity.

Yesterday's hearing was, I think, smaller in numbers, but more informed in general. There was the same ombudsman at the front table, Stew Grabel, as well as Karen Fields and this time Robin Gwozdz made an appearance. Only one of the Supervisors, Richard Elias, sent a representative. I understand according to legislation, the full five Supervisors cannot be in the same room at the same time outside of official meetings, but I think each of them should be sending someone in their stead. As important as this issue is to so many people, I think it's disrespectful to not bother to show up at all. Of course, I also find Chuck Hucklberry conspicuous in his absent. A sheet of proposal questions and answers was handed out the beginning of the hearing. It was noted at one point that this sheet mostly deals with issues concerning attendants as employees and how their jobs might be affected, rather than the issues of the clients. The inference made when these hearings were scheduled was they would center around the clients and their concerns about continuity of care.

It was also announced that the county has sent out questionnaires to be filled out be both attendants and clients. Once I receive mine, I shall write about it here.

Anyhow, several people stood to speak, clients, attendants, and family members alike. Now that some time has passed and people are being given the chance to truly participate in their own care planning, the concerns and questions being presented were clearer and more specific. Several statements made were in regard the county's ability to maintain quality of care when clients are moved away from the current system into 20 or more agencies. Who will monitor the care if and when interruptions of care occur? From the answer Robin G. gave, PHS plans to review all interruptions of service forms sent in once a month. I'm fairly sure I cannot and do not want to wait 30 days or more to find out if the county will act on any failures in my daily care. Several care givers, mostly those taking care of family members, told horror stories of agencies failing to provide care, clients becoming injured and ill, and ensuing nightmares of nursing home visits. But the basic comment being made was that the further from the county our care goes, the more likely there in fact will be interruptions of service with less policing of the contracts made with those agencies.

One very well spoken client pointed out something I've been discussing with several people: if this is a plan only in the discussion phase, why did the attendants receive a letter on December 1, 2007 stating the program was in fact being closed? My related concern has been the dismantling of the PCA pool, a vital part of the whole program. Yet, Robin G. stood up to say the Supervisors have the final say and that vote is planned for some time in March, after they review our input.The discrepancy was pointed a few times, yet she made no direct comment on it. I just cannot shake the feeling these hearings are a huge smoke screen to humor us, but they intend to get this over and done, no matter our concerns.

The above client also talked about the issues involved in the so called consumer directed care program, something she has dealt with here as well as in California, a program initiated by the county so that clients might hire, interview, back ground check, train and fire their own people. This program provides no backup system if schedules fail for any reason. I have in the past had to hire my own care givers. It is a long, exhausting process. She confirmed that for clients requiring several visits daily 7 days a week, such as myself, those type of programs do not work well.

She and one other speaker took on the topic of the care available from the agencies. Both have called the agencies themselves, and I know 2 others who have done so. The final count is the same; few of the agencies at this time can or will provide the services needed by many of the clients. Yet the county maintains that all 20 agencies are by contract required to offer all services currently received by all clients. And again, I am still being told by my own case manager that not one of those agencies will be a good match to me. Another reason I feel we are being lied to.

There were also several speakers, including a representative from the Tucson interfaith council, who touched on what the motives could possibly be behind dismantling the program in the first place. A program that works is being torn down and replaced by a system that hasn't been investigated nearly enough or proven to provide appropriate care to those who need dependable service. And once again, neither Robin nor Karen had good, direct answers.

In general this hearing was a good indictment of the flaws, inconsistencies, and hypocritical information we have up to this date received from the county. A great number of people are now aware of the county's plan and aren't going to just let this go by. I just hope Pima Health System is paying attention. If not, people are going to fall through the cracks.

More later.

Yesterday in the mail I received a response from the county to the letter I wrote at the beginning of this debate. Though two pages long and well written, it does not answer any of my concerns. They still insist that the plan is a go and that the contracted agencies can cover my schedule of care. Yet I have heard nothing but the contrary. The second hearing is tomorrow and I will be there. Here's the letter I wrote, for your convenience, and the county's letter, for comparison:

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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.

Some information about me may illustrate the gravity of this issue. I have been disabled for my entire life and have striven to be as independent as possible. Not a day has passed during which I have not needed assistance for my basic daily needs. That has meant 3 visits a day, 7 days a week, for my entire life. I have been a Tucson resident and part of the Arizona long term care system for more than 12 years. I do not need 24 hour care or respite care, but do need assistance with essential things like bathing, dressing, toileting and a few simple household tasks. These things do not require much time, but are absolutely necessary for me to live independently. I need to know that someone will be at my door in the mornings to get me out of bed, in the afternoons to assist me with the few basic necessities and again each night to help me back into bed. I need to be confident that someone will be at my door on weekend mornings, without fear that I have been overlooked because my needs are not convenient or cost effective.

As for the projected changes in the Pima County Attendant Care Program, It has been made clear by the County Supervisors that personal attendants assignments are guaranteed to remain the same. This is immensely important to the continuity of client care. But what if caregivers choose not to follow with the client? Any interruption in my care plan means lying in bed for long hours, unable to use the rest room and left to soil myself, with no access to food and drink, and no way to know when or if someone might show up.

The availability of back up caregivers in the event of employee illness or any unexpected disruption of service is absolutely vital. I must know that any care agency I am to be transferred to can absolutely guarantee the same level of care I have received up to now. I have not been anxious about lapses in service during my time in the Pima County Attendant Care Program. It has been stated by many people including my own case manager that only one of the 19 agencies currently contracted with the county may, in the future, offer something close to the level of care that I currently receive. You must understand my reluctance to believe that the transfer of my care into the hands of any agency, that has previously proven unable and unwilling to meet my needs, will proceed smoothly. As I understand it, the Pima County Attendant Care Program was created specifically to fill the various gaps in service present in outside agencies. Have those shortfalls been addressed? I believe that further study is warranted before any changes are made.

Finding caregivers willing to work weekends and bedtimes has always been difficult. Private care agencies do not accommodate these needs. Of course, most people would like to have their evenings and weekends free, but I do not have the luxury of foregoing care during those times. I cannot just lie in bed waiting endless hours because caregivers are not available at bedtimes or on weekends, yet this is what I fear may happen.

I am not able to depend on my aging parents or my one disabled sibling for assistance. It is not practical, safe, or appropriate for clients to rely on neighbors and friends, nor is it their duty. I have learned that most people aren’t dependable enough to keep me as independent and healthy as I should expect and deserve. Knowing that a stable structure such as the Pima County Attendant Care Program is in place for clients such as myself is essential that I might continue being healthy, autonomous and secure.

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 so glibly decide my future and my health, without the slightest contribution from me? The Supervisors and Directors seem very comfortable making decisions about my care without ever consulting me. Who knows better about my needs than I do? Yet it is obvious that those most affected by the proposed changes are being deliberately left out of the discussion, by design of the county and the clients’ own physical circumstances.

I only ask to be treated the same as any of you would want to be treated in a similar situation.

Pima County HAS met my needs, until now. I worry that the County Supervisors have chosen to shut down a system that works, in order to make their jobs easier. The Attendant Care Program may simply need a little repair and improvement rather then complete replacement with a system that has already shown to be lacking. The proposed changes are not in any way designed to make clients feel secure for their own wellbeing. To be honest, it makes me feel warehoused and disregarded by those who should know better about the needs of the people they are affecting. I strongly urge the County Supervisors to reconsider their proposed actions.

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And the county response letter:

There hasn't been a great deal of information coming this week. I've had no new news as to any agencies being able to maintain my care plan after the county closes its doors. Information I still insist the county administrators should have gathered before announcing their plan. All I am hearing is how the attendants are guaranteed employment, but not whether the clients are guaranteed matching care. None of the agencies have stepped up to the responsibility.

Meanwhile, the second of the three planned hearings is this coming Saturday, February 9th at 10:30 am, at the El Rio Neighborhood Center 1390 W. Speedway Blvd.

If you want to know more or want to help out in any way, you can contact me. Don't hold back, the louder the better.

Silence is consent.

I've had some small discussions this week with those involved about the continuing and most recent dismantling steps of the PCA pool. Despite the hearings and vast concerns being vocalized at this time, PHS and Huckleberry are not halted in their plans to remove the Attendant care program. And also despite the fact that the final decision is supposed to be pending and solely in the hands of the Supervisors.

I've heard some plans being suggested in this regard, and I will certainly inform right here when I know more.

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!

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.

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.

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.

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!

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:

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.

Some information about me may illustrate the gravity of this issue. I have been disabled for my entire life and have striven to be as independent as possible. Not a day has passed during which I have not needed assistance for my basic daily needs. That has meant 3 visits a day, 7 days a week, for my entire life. I have been a Tucson resident and part of the Arizona long term care system for more than 12 years. I do not need 24 hour care or respite care, but do need assistance with essential things like bathing, dressing, toileting and a few simple household tasks. These things do not require much time, but are absolutely necessary for me to live independently. I need to know that someone will be at my door in the mornings to get me out of bed, in the afternoons to assist me with the few basic necessities and again each night to help me back into bed. I need to be confident that someone will be at my door on weekend mornings, without fear that I have been overlooked because my needs are not convenient or cost effective.

As for the projected changes in the Pima County Attendant Care Program, It has been made clear by the County Supervisors that personal attendants assignments are guaranteed to remain the same. This is immensely important to the continuity of client care. But what if caregivers choose not to follow with the client? Any interruption in my care plan means lying in bed for long hours, unable to use the rest room and left to soil myself, with no access to food and drink, and no way to know when or if someone might show up.

The availability of back up caregivers in the event of employee illness or any unexpected disruption of service is absolutely vital. I must know that any care agency I am to be transferred to can absolutely guarantee the same level of care I have received up to now. I have not been anxious about lapses in service during my time in the Pima County Attendant Care Program. It has been stated by many people including my own case manager that only one of the 19 agencies currently contracted with the county may, in the future, offer something close to the level of care that I currently receive. You must understand my reluctance to believe that the transfer of my care into the hands of any agency, that has previously proven unable and unwilling to meet my needs, will proceed smoothly. As I understand it, the Pima County Attendant Care Program was created specifically to fill the various gaps in service present in outside agencies. Have those shortfalls been addressed? I believe that further study is warranted before any changes are made.

Finding caregivers willing to work weekends and bedtimes has always been difficult. Private care agencies do not accommodate these needs. Of course, most people would like to have their evenings and weekends free, but I do not have the luxury of foregoing care during those times. I cannot just lie in bed waiting endless hours because caregivers are not available at bedtimes or on weekends, yet this is what I fear may happen.

I am not able to depend on my aging parents or my one disabled sibling for assistance. It is not practical, safe, or appropriate for clients to rely on neighbors and friends, nor is it their duty. I have learned that most people aren’t dependable enough to keep me as independent and healthy as I should expect and deserve. Knowing that a stable structure such as the Pima County Attendant Care Program is in place for clients such as myself is essential that I might continue being healthy, autonomous and secure.

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 so glibly decide my future and my health, without the slightest contribution from me? The Supervisors and Directors seem very comfortable making decisions about my care without ever consulting me. Who knows better about my needs than I do? Yet it is obvious that those most affected by the proposed changes are being deliberately left out of the discussion, by design of the county and the clients’ own physical circumstances.

I only ask to be treated the same as any of you would want to be treated in a similar situation.
Pima County HAS met my needs, until now. I worry that the County Supervisors have chosen to shut down a system that works, in order to make their jobs easier. The Attendant Care Program may simply need a little repair and improvement rather then complete replacement with a system that has already shown to be lacking. The proposed changes are not in any way designed to make clients feel secure for their own wellbeing. To be honest, it makes me feel warehoused and disregarded by those who should know better about the needs of the people they are affecting. I strongly urge the County Supervisors to reconsider their proposed actions.

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.

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.