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.