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

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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.