January 9, 2000

Dr. Todd Forman
Kelly Medical Group
1255 15th Street,
Santa Monica, CA 90404
(310) 319-4700, -4500

Over the holidays, I've called Kelly repeatedly to reach  you.  Usually the message center extension only rings and rings, thus I must send you this fax/letter.

Buc's G-tube will soon be clogged.  I don't believe that her present G-tube is manufactured from good material because within a week of  use, it was beginning to become pitted by her Fiber Source.  I contacted the manufacturer (Bard <bip.webmaster@crbard.com>) but they have not replied about this problem.  It has not lasted one-tenth the time her original G-tube lasted. I believe it is wrong to subject her to repeated G-tube insertions.  What is really ironic, we've got her present G-tube's stoma stabilized:  there is no gross infection or leakage and I hate to change it for this reason alone.  We've tried cleaning it with pipe-stem cleaners, but we really need professional gear to do this, including a way to measure the bulb's inflation and reinflate with water.  This is one more reason why we need nurse practitioner visitation.

As you may know, Buc was admitted to emergency about two months ago. She was bleeding from her stomach through her tube.  She was severely coughing, sneezing and throwing up from a case of the flu, and I believe she might have ruptured a vessal.  She was in emergency from 10 PM to 2 AM and then returned home by ambulance.

She still has no bed as a continuing saga of an ironic twist of fate.  This occurred when one Friday, we were informed that her new bed which you ordered was arriving.  The same day, I then notified the DOC that it was no longer essential pursuing the bed issue with her prior HMOs.  Then Monday I found out that Apria was going to deliver the same bed that she has under the pretense that the bed you ordered is not covered by Medi-Cal or Medicare.  If in fact there is no coverage for her bed, which I do not know for sure, then it is imperative to reinstitute the issue with the DOC.  This is stuff I was hoping Steve Deittlebaum could more effectively handle, but he's been away for the holidays too.  This was all concurrent to Buc's lapse of Medi-Cal coverage by a computer glich in Sacramento lasting for almost four months!

You might note that the longer all social services are stalled for the next five years, Medi-Cal saves lots of money, since after five years they will go after our home for any cost of services accrued after Buc reaches the age of fifty-five.

Recently, Buc communicated to Justin that she is very tired of lying in her bed.

Early this morning (Sunday), Buc was deliberately moving her appendages.  It was crude, but she took great delight.  She really needs more than me as her physical therapist, but it seems like her plan of care has stalled.

Buc has been gnashing her teeth quite abit lately.  She is greatly dissappointed by the absence of care she should be receiving and by the endlessly cruel society around her.  Our condominium association is suing to foreclose and to evict us for four thousand dollars in unpaid condominum dues.  I don't think any of them know what it is like to be paralyzed in a cocoon after playing tennis, and unable to speak for three years as though their mouths were taped shut!

I will be going before a State of California Adjudications Administrative judge to protest the severely restrictive nursing hours the Department of Social Services has allowed and their total lack of support, denial of care and services we should be receiving, inclusive of respite for me, the care giver, which is administered by the County under the County Supervisors. They stonewall at every turn by either restricting access to them or denying (unofficially of course) the actual presence of certain benefits and by refusing to provide specific information outlining all benefits.  What they do, is assign case workers who ask the questions and make pre-determination of the patient's qualification, without clarifying orally or in writing the availability of social services the patient might otherwise receive or qualify.

For example, two county case workers told me that spinal cord injury1 patients receive upwards of seven hundred hours per month, as do certain mentally impaired.  Once before, during an appeals in the State Building downtown, before an Administrative judge,  the case workers defending the County's position, denied anything like this is allowed by law (California Code of Regulations).  Buc won this hearing, and recieved extra hours retroactively, but not the seven hundred.

Three months back, during Medi-Cal's computer glich, I mentioned this to DPSS Deputy Director, who replied that he was unaware of anything like this, despite two of his employees telling me otherwise.  He asked their names, but I refused to divulge this to him.

Essentially, our family is being eaten alive by all the medical supply costs and utility bills which alone can reach $400 per month.  Since Buc has come home, we are charged extra for being above our baseline, by both the Southern California Gas Company and by Edison.  I've appealled to the PUC, but unless we can prove the use of specialized home medical equipment, they will do nothing.  In essence, we are being penalized for having a sick person in our home.  Steve should really be able to do something about that.

In the process of downloading appropriate sections of the Code, I discovered that the County Supervisors administer a relief program for care givers (respite).  Though they and Zev Yaroslavsky's office were well aware of our situation, as well as the computer glich, they chose only to act upon the computer glitch, never providing me application form, case worker nor mention of this assistance.

Sincerely,
 

Joel Webb
910-B 20th Street,
Santa Monica, CA 90403
(310) 828-2292 (310) 829-0767