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The Ragged Edge
Sept/Oct 1997

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Peggy Hecker reluctantly made the decision to use visiting nurses when it became increasingly difficult to find live-in attendants who would work for the wage paid by her state's In-Home Support Services program.

'I have little choice anymore'
by Peggy Hecker

Since January, I have had daily 24-hour registered-nurse and licensed-visiting-nurse care through California's Department of Health Services' In-Home Operations Section, which is paid for by MediCal [California's Medicaid program]. I reluctantly made the decision to go on this program because it had become increasingly difficult to find live-in attendants who would work for the minimum wage paid by California's In-Home Support Services program. Disabled by polio, I've used a wheelchair since age 12; in 1984 I had a tracheotomy and now use a ventilator.

Those of you who depend on a machine to breathe know well the un-fun things that go along with keeping our lungs clear of secretions: nebulizers, percussion and suctioning, which take (or at least, take me) several hours a day.

California's IHSS program, as good as it is, currently pays for a maximum of 283 hours a month -- at a wage of $5 an hour. That's fine -- if you can get by on 9 hours of help a day. Those of us who need more help, though, have a serious problem: 9 hours a day ain't enough!

I have gotten by with attendants all these years -- mostly Latina women from Mexico and Central America -- by giving them a free furnished room and free utilities along with the salary paid by IHSS. These women stayed with me anywhere from one to four years.

But in the last two years my attendants have been leaving after a few months.

I was becoming depressed, anxious and frightened by the possibility of not finding anyone and being left alone. I live by myself and have o family nearby. My neighbors mostly keep to themselves.

I prefer not to have nurses, but I have little choice anymore.

Although the home health agency I selected is a good one and I have complete control of my schedule -- I wake up and go to bed when I choose; they bathe, dress me and handle my care the way I say -- I cannot interview and select he nurses, nor can I decide the number of days I want them to be with me. When I had attendants, I had two people who were with me 24 hours each, one for five days, the other for 2 days. Now I have eight different nurses who do 8-hour shifts various days of the week. That's a lot of people, folks!

For now I'm not unhappy with any of these nurses. If the agency assigns me a nurse I can't get along with, they will, if my reasons are legitimate, do their best to replace her. Most important, I have the security of knowing that a responsible person will always be here.

But one of the things I don't like is that they give reports on my care to one another, and they write things in their "book" -- even the doings of my cat! I am slowly learning to accept even this as one of the trade-offs of my decision to use nursing care rather than attendants.

I feel somewhat of a traitor to my disability community for the road I have chosen. If IHSS ever pays a decent wage of $8 to $10 an hour and allows those of us who need it in order to survive to hire 24-hour care, then I will go back to using attendants for personal care like I used to. I still get 122 hours a month from IHSS of housekeeping and chore services, since nurses don't do this. I have an attendant that comes daily for these chores.

What are others who need more money and hours for attendants doing to survive and stay out of a nursing home?

Readers who want to respond can write "Attendant stories," c/o Ragged Edge, P.O. Box 145, Louisville, KY 40201 or send email to EdgeMag@aol.com.


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