CDA believes that FORCING folks into nursing homes against their will is not only abhorrent but illegal, given the recent US Supreme Court ruling in the Olmstead vs. L.C. and E.W. case, in which the Court endorsed the right of people to receive community-based care when most appropriate to serve their needs. But in 1999 and 2000, some people with disabilities found that their home-health services, which allowed them to remain in the community, were being cut off. This would force them into nursing homes. CDA got involved.
On September 14, 1999, we got a "HELP!!!" message from a 19-year-old girl from Davis, two years post-accident, a ventilator-dependent quadriplegic ("like Christopher Reeve," she says).
Sara wrote, in part: "My funding for the 24 hour a day nursing is better than a majority of other person's in my situation. [Without warning] my home health agency told me that the nurses were unhappy ... The following day they came, knowing my mother was not home and I was by myself and told me they were terminating my case because my nurses did not want to work with me anymore. Later I learned that they had lost several nurses each on some of their other cases, [and were] cancelling my case because I get 24 hour coverage [and] they can pull my nurses and fill in ALL the holes in their other cases."
I do not know what to do. HELP me, what can I do? If I don't find nursing care I will be forced to return to an institution, which is HORRIBLE, HORRIBLE, HORRIBLE. Please help me with ideas, guidance, resources whatever. I need help!!!!!! Thanks Sara"
On December 1, 1999 Blane Beckwith of Berkeley wrote: "I'M TERMINATED. My in-home nursing agency, SunPlus, today sent me a 30 day notice of termination. The final day they will provide me with care is December 29. After that ??? "
CDA Note: This came right on the heels of a similar case, member David Freeman of Berkeley, who had written on September 29, 1999, that his in-home nursing agency (Nightingale) was threatening to drop him too. Eventually David resolved this problem (not the first time it occurred), with the assistance of Berkeley's Center for Independent Living (CIL).
STATE INDEPENDENT LIVING COUNCIL
1600 K Street, Suite 100, Sacramento, CA 95814
voice 916-445-0142
fax 916-445-5973
tty/tdd 916-445-5627
January 11, 2000
Grantland Johnson, Secretary
CA Health and Human Services Agency
1600 Ninth St., Room 460
Sacramento, CA 95814
Dear Secretary Johnson:
I am writing in response to numerous concerns expressed by people with disabilities in California concerning the virtual abandonment of home care cases by nursing agencies. It is my understanding that your office has been contacted about this issue by advocates, family members, individuals who have been affected by these actions, and perhaps even by staff of federal agencies.
This matter was first called to my attention by the family of Sarah Granda, a young lady from the Sacramento area who was recently forced to move from her home to a skilled nursing facility in Santa Clara. The reason for her move was the discontinuation of her case by the home-care agency, allegedly because of a shortage of nursing staff. Subsequently, anecdotal information has indicated that she may not have been an agreeable patient in the opinion of the nurses or their supervisors.
In addition to Ms. Granda's situation, I recently received email correspondence from Jean Nandi, who represents the California Disability Alliance (CDA). That organization is an advocacy group based in the Berkeley area. Ms. Nandi included details of specific cases about additional persons who have been threatened with discontinuation of services, or who have had their cases dropped. I expect to receive more information in the near future, as Ms. Nandi has asked other regions of the state to gather such information as well.
Bob Williams at the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in the federal Department of Health and Human Services has requested that I contact you to assure that you are aware of this situation. Some of these clients are receiving services under the current in-Home Supportive Services program, others might be able to qualify for 24-hour attendant care through a Health Care Finances Administration (HCFA) waiver, and at least one of these individuals was a client of Developmental Services. Rather than work individually with one department director in your agency, it would be helpful to receive your assistance in assembling a group at the deputy or director level to evaluate the problem, take corrective measures as appropriate, and seek long-term solutions so that this does not continue.
Mr. Williams indicates that the HCFA is aware that this is a deteriorating condition in California, and wants to see it corrected immediately. Unfortunately, I do not think there is a simple solution. Many of these individuals are receiving services from registered nurses, at a significantly higher cost, when they could be safely assisted through an individual provider mode. One of the solutions to the problem may include a serious look at the Nurse Practitioners Act to determine if it is still a valid tool in this age of nursing shortages.
This letter, and the attachment, is being provided to the directors of those agencies who have been referenced indirectly in the case histories provided by Ms. Nandi at CDA. I would welcome a call from you, your staff, or key staff in any of your appropriate departments to begin scheduling a meeting on this subject. While any proposed solutions may require legislative action, Governor Davis has expressed support for improving the ability of people to live in the community. I believe that the concerns of the community, when coupled with the expressed support from the administration, will result in appropriate regulatory changes taking place to correct this situation.
If you need any additional information, please give me a call at 445-0142. I look forward to speaking with you about this subject in the very near future.
Sincerely,
Michael C. Collins
Executive Director
Attachment [the attachment was a summary of the problems presented on this website]
cc:
Alfred D. Chichester, Chair, State Independent Living Council
Diana Bonta, Director, Department of Health Services
Rita Saenz, Director, Department of Social Services
Clifford Allenby, Director, Department of Developmental Services
Dr. Stephen Mayberg, Director, Department of Mental Health
Lynda Terry, Director, Department of Aging
Catherine Campisi, Director, Department of Rehabilitation
Jean Nandi, California Disability Alliance