By Pamela Hoye
March 17, 2010 (San Diego) -- I was relieved to read in East County Magazine that the federal Department of Justice has come forward to support court challenges that would block Governor Schwarzenegger’s funding cuts to the State’s In-Home Supportive Services Program (IHSS). But there other ways to kill a program, and do so quietly, besides funding cuts. Those of us currently receiving services are facing a vastly altered and far less caring program that threatens to force many of us into nursing homes.
Although disabled by cerebral palsy since birth and unable to keep a pace required by regular employment, I have been a productive member of society. I have worked as a freelance writer, editor, and desktop publisher, in addition to serving on citizen advisory committees and being active in political action groups.
These activities and life itself have been made possible solely with the help of caregivers who get me up in the morning and put me in bed at night, bathe me, dress me, cook for me, feed me, take me to the bathroom, clean my home, cut my nails. Anything one needs to do as part of normal daily life, my caregivers must either assist or more often, do for me. Once I am in front of the computer, with my typing stick in my mouth, this is when I become independent and free.
Except for a brief period when a small inheritance from my father enabled me to be a woman of independent means, I have relied on IHSS to pay for my caregiving needs for the bulk of my adult life. IHSS is an income based program, serving low-income seniors and people with disabilities. I served on the various County IHSS advisory committees for many years, retiring in 2006. It seems ironic that detrimental and oppressive changes have arisen since I abandoned my watch, catching me unaware.
First, senior and disabled persons receiving IHSS are to be fingerprinted within the coming year and our homes are now subject to unannounced visits. While the State says that unannounced visits have not yet commenced, I know of one that has taken place in San Diego County, by a member of the State Police. These measures are in addition to regular yearly assessment visits by social workers that have always been a part of IHSS requirements.
For years advocates have pointed out that the State could save money by requiring fewer visits to permanently disabled individuals, since our conditions are unlikely to improve. The Governor is trying to cut services to all but the most severely disabled, yet he has taken an even more costly, less understandable approach.
The fingerprinting and unannounced visits are part of the Governor’s “IHSS Fraud Prevention” plan, which, we are now told, brings IHSS in accordance with Medi-Cal laws. Under the new rules, both those who need services and their caregivers will be required to place their fingerprints on regularly submitted timesheets that we each currently must sign. Are you wondering like I was: what exactly is the “fraud” the Governor is looking for?
To me, fraud means dishonesty or deliberate misrepresentation. For me to commit fraud I would need to be pretending to need services I didn't need or pocketing money that was meant for my caregivers.
Thus, when one of my caregivers showed me the new “orientation packet” she had been sent – for the first time ever – what I read came as a shock. While I am aware of more than most who receive IHSS services because of my years of volunteering with the County IHSS Program, NEVER in 35 years have I been informed of limitations within “authorized services” in my role as a program “recipient.” From this information packet I learned, for example, that my caregiver can be paid to drive me to the doctor, but not for going to the appointment with me. I have speech impairment as well as being unable to wheel my own chair I cannot see a doctor on my own. I've been committing fraud without knowing it. Now, do I give up going to the doctor? Considering that I am nearly 61 and recovering from spinal surgery, this is probably not a wise option.
Still more disturbing to discover was that a time-for-task regimen has, at long last, been encoded into IHSS. I have advocated against imposing time-for-task because it WILL NOT WORK. No one lives their lives moment-by-moment by a time clock, but rather by segments of time. Within each segment one has an idea of what he or she hopes to accomplish and a sense of "priority". If time is running out, this sense of priority kicks in and ones tries to finish what he/she considers important.
This is how I have lived with help from IHSS, meeting the needs I am able to meet within the service hours allocated. As a friend observes, I'm not a UPS delivery, which can be time-tasked. I'm a disabled person, whose needs and the time it takes to address them can change not only day-by-day, but within a day. I'll wager that even a UPS delivery person has some flexibility within their schedule. Not so for disabled persons and seniors.
The caregiver information explicitly says that if my needs exceed the allocated time for any given task, whether by daily or monthly calculation, we may not use time allocated to other tasks. It is FRAUD for me to pay caregiver for the extra time I take going to the bathroom, feeling it more important than sweeping the floor or putting away all the laundry. Of course, if folding my laundry takes longer than the allocated time it must be left unfinished.
In the past, it would never occur to me to ask the IHSS program for more time for unexpected needs. Life is about adjusting, making do with what's available. Now, I read that “to make do” is to commit fraud.... This is really tough for me to wrap my common sense and moral sensibility around.
The basis for time-for-task is an assessment tool created to help social workers assess how many hours to assign a person needing IHSS services, because not every senior or disabled person has the same needs. The developers envisioned it as a guide only and never intended it to be used as time-for-task. Through the years conservative elements have tried to institute this ridiculous misapplication as a “money-saving” measure. Yet if I and others begin asking for extra task time whenever we need it, IHSS will likely cost more, not less, for both services and administration. Each request will have to be processed, even those that are denied.
So, on a beautiful day I am apparently committing fraud if I ask and pay my caregiver to set me out in the sun or if I take longer than “authorized” to be fed dinner because I’m coughing more one night. I am certainly committing fraud if I ask them to take me to visit Mom at her board & care. The limited scope of "authorized services" is a whole other topic needing public scrutiny and most likely legislative change. But to give information about program limitations to caregivers only and not to seniors and disabled persons receiving these services is to dehumanize us.
And to threaten our caregivers with fraud for the slightest variation is to hold a weight over their heads in turn, putting a wedge between we who need help and our caregivers. Fear of their own conviction empowers caregivers to report possible violations by us and, in some cases, they are mandated to do so.
Most "violations" typically arise out of need and have been met in the past with compassion. IHSS has worked well because it fostered genuine care and concern. It afforded both caregiver and the person needing care the necessary interpersonal contact on which to build trust, mutual respect, and .friendship. Decent people have a really hard time working in nursing homes and care facilities. With its emphasis on fraud and time-for-task the very heart of caring is being cut out from the IHSS Program by turning my home into an institution.
Going forward, it will be difficult to attract the quality of caregivers as I have in the past. The compensation is too low; The $9.50 per hour paid in San Diego is better than minimum, but not a living wage. And the hurdles for becoming or remaining a HISS caregiver are huge, To begin with, our caregivers must now pay anywhere from $50 to $75 for their own fingerprinting and Department of Justice background check. If the DOJ revels anything the State has deemed unacceptable, one will find a longtime, trusted caregiver is out the door.
Currently the system chokes as the State and counties grapple with implementing the Governor’s new regulations, which are in a sate of flux due to multiple court challenges. I have been trying to signup my neighbor as a backup caregiver for two months. It is frightening to contemplate having to replace a primary caregiver under this system even when the process is snag free. When I need to go the bathroom or eat, get in or out of bed, these will not wait for paperwork and bureaucracy. One silver lining in this is that the IHSS Public Authority Registry has been in operation for several years and maintains an updated list of potential caregivers. So while we may no longer be able to hire friends or neighbors quickly, we do have this potential resource.
Finally, when I first learned that I would be finger printed and that my home would be subject to unannounced visits — recipients were at least given notice of these changes — I felt violated, as if I and all who use IHSS services were being made to feel like criminals without trial. I felt that my dignity had been stripped from me and my civil rights violated. I still feel this to be true. However, now that I have seen the Provider Orientation information I understand I am guilty and that, since I cannot and will not live by the tick of a timed-task stopwatch, I will remain so. I am generally pretty resourceful... and I am overwhelmed by the changes.
My heart breaks when I think of those who will be "hit" unaware. Indeed, one of my friends recently informed me that she is considering throwing in the towel and moving into a nursing home facility because of the state's actions to reduce in-home care.
As I said, there are other ways to kill a program besides cutting funding.
Systematically criminalize those who depend upon the services while simultaneously rendering the program ineffective. Oh, and waste millions of dollars building a new bureaucracy to accomplish this. Rumor from the Capital is the State plans to drive us all into nursing homes within five to seven years, despite evidence that nursing home care is much more costly. But of course, then the burden of cost will then fall more heavily on the federal government.