Columns

Senior Power: Caregiving

By Helen Rippier Wheeler
Monday January 31, 2011 - 09:11:00 PM

Syndicated political cartoonist Bulbul says it well. Hands on hips, faced with a lengthy medical bill and zero Medicare, an elder confronts a gent who displays a MedBiz diploma on his office wall. She grrrs “No it’s not senile dementia— It’s too much MEDI and not enough CARE!” 

This column is about some of the care-giving and care-givers of the elderly. Nursing homes, care homes, in-home social services, and Ombuds. 

An October 2010 press release announced "With first baby boomers on the verge of turning 65, Eldercare Locator gears-up for a rapidly aging population." The Eldercare Locator is said to be the first step to finding resources for older adults in any U.S. community, enabling them to live independently in their communities and to offer support to caregivers. “Just one free phone call (1-800-677-1116) or website visit (www.eldercare.gov) instantly connects people to community resources. Eldercare Locator is a free, national service of the U.S. Administration on Aging.” If you have time and patience, try it. I waited 20 minutes, gave up. Doubtless, it’s still gearing up. 

Alameda County Social Service’s In-Home Supportive Services (IHSS) is “a federal, state, and locally funded program designed to provide assistance to those eligible aged, blind, and disabled individuals who, without this care, would be unable to remain safely in their own homes.” I tried the phone number provided in its website (510-577-1900)and couldn’t get a real live person: in short, if you are a low-income old and or disabled person, to apply you are advised to go online or come in to the office! Many low-income senior citizens need a capable caregiver (“a chore provider”) until they go to a nursing home or otherwise depart. They may live alone or be without families. They may need temporary care following hospitalization or a fall. Following major surgery, I was unable even to get a response to my application. I am aware of two excellent IHSS caregivers of low-income disabled senior citizens; I am also aware pf unacceptable treatment by others. 

This is not, by definition, “assisted living.” For a timely account of costly “assisted living,” read Patrick Egan’s New York Times (December 7, 2010) article concerning his father, “When the assisted-living bill balloons.” 

A grannycam is a camcorder that records 24/7 how your older relative is being treated by any given caregiver, assuming it’s plugged in! Cynthia Hubert reports "Grannycam video spurs state to shut Fair Oaks care home." (January 14, 2011 Sacramento Bee) How is your older relative being treated? How are you being treated? Whether in a group home, nursing home, or in the care of a relative?  

The patient mentioned in the Bee article had a relative, and a video camera was near her bed and wheelchair but someone unplugged it. A small video clip was preserved. A law suit charging abuse, neglect, and wrongful death was filed. The nursing home denies all accusations. The California Department of Social Services did an investigation, and ordered the operators of the home to close by the end of that day. The same thing might happen if a relative or hired caregiver is taking care of a patient at home. Will the state revoke the home's license? Or will the home open again? Emergency actions to close a nursing home are rare. Were there regular Ombudsman visits and reports? 

There it was, the March 22. 2010 TV news. Events associated with the Elmwood 

Nursing and Rehabilitation Center [for profit-corporation owned by Shattuck Health Care, Inc., certified in 2005, rated below average, participates in Medicare and Medicaid, 74 beds, reports the presence of a Resident Council] once again brought nursing homes and caretakers into the news. Then-Attorney General Jerry Brown's office had charged theft, elder abuse, false imprisonment and other charges.The Department of Justice also found that an administrator had conned a patient’s son into paying her to keep his mother at Elmwood. (For an account of my visits to this place of care and caregivers, see Planet, April 1, 2010). 

When were the last Ombudspersons’ visits? Did they consult the so called Resident Council? When a low-income senior is hospitalized, where s/he goes after the three-day hospital stay is pretty much up to the surgeon or other physician, who may or may not record a recommendation on the chart. Another human factor is whether there is family.  

Fraud and exploitation by staff are inevitable precursors to abuse of patients, senior citizens especially (especially those without family and low-income), in nursing homes and hospitals. CalQualityCare provides free ratings of such long term care providers as nursing homes, home health care agencies, and assisted living facilities. Medicare compares nursing homes and rehabilitation centers. 

Closely related to successful nursing home support services is the Ombudsman: “1. A man who investigates complaints and mediates fair settlements, especially between aggrieved parties such as consumers or students and an institution or organization. 2. A government official, especially in Scandinavian countries, who investigates citizens' complaints against the government or its functionaries.” (American Heritage dictionary, 4 ed.) The ombudsman concept has been adopted in individual states in the United States, and the term has also been expanded to include people who perform the same function for business corporations or newspapers. 

Local Ombudsman programs in California are listed, by county, by the California Department of Aging at www.aging.ca.gov. AlamedaCounty’s Long-Term Care Ombudsman Program is listed as (510) 638-6878, where I spoke with a person who was willing to listen, repeat, and respond! I learned that the ombudsman is not applicable to elders renting in Section 8 housing projects: a “police report” must be made. I recently wrote the Alameda County Social Services Agency Ombudsman requesting that she share ombudsmen's reports relative to nursing homes located in Berkeley. Not even acknowledged. 

An online document titled California Department of Aging Ombudsman / Advocacy Assistance Program Narrative it includes the following regarding “Access:” Ombudsman program Information and Assistance is available 24 hours a day via the CRISIS line at 1-800-231-4024. Every licensed long-term care facility in the State is required to display at least one poster, in an area accessible to residents, advertising this number. Ombudsman and information about services and can also be accessed through the Information and Assistance programs by calling the statewide toll free line at 1-800-510-2020, the local Area Agency on Aging (Alameda County’s Area Agency on Aging “Senior Information Line). 

So, if you have a relative in need of full time care, you may need an ombudsman plus a grannycam plus someone who visits frequently and checks to see whether the camera is operating. 

I am weary of the assumption that every senior citizen has “family members,” a decent income (one in six American seniors lives in poverty), and choice. People who can't help themselves need a caregiver who will not be abusive to older, helpless people out of frustration, anger, or emotional problems. Most elders want is to stay in their homes and be surrounded by those who love them. What type of care do you want for yourself? Cuidado. Be careful choosing a nursing home or elder care residence just because the operators have similar ethnic origins to yourself or your relative.  

It has been suggested that, sometimes for the same cost, you might as well build an extra room and bath onto your house for your relative and perhaps a caregiver. Again, what about old people who have no family and or significant income? 

Old people are still hidden away when they start falling instead of finding out what in their activities, nutrition, or medication might unsteady their ability to balance and to take action such as exercise that strengthens their balance and prevents continuous falls.  

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In November 2010, National Public Radio (NPR) featured a series of reports on nursing home care titled "Home or Nursing Home: America's Empty Promise to Elderly, Disabled."  

Many people mistakenly believe that nursing home residents are too sick to live at home. Yet many people who have the same disabilities found in nursing homes are able to live in their own homes with assistance from family or aides (“caregivers”). Care at home is a new civil right according to Joseph Shapiro. A growing body of law and federal policy states that when the government pays for someone's care in a nursing home, that person should be able to choose to get that care at home. NPR’s Investigative Unit looked at this emerging civil right to live at home and found that although it has been established in law and federal policy, the chance to live at home remains an empty promise for many people. States are slow to create new programs. Government's enforcement record is spotty. There are often contradictory federal and state policies about how to pay for long-term care. (National Public Radio's All Things Considered December 2, 2010 show, is at http://www.npr.org/2010/12/02/131751461/care-at-home-a-new-civil-right). 

State-To-State Nursing Home Data Differences, an NPR analysis of unpublished data on nursing homes in America, shows that nursing home residents and the degree of their disability vary from state to state. Data were obtained by NPR's Investigative Unit via a Freedom of Information Act request. The study concludes that home-based care may save states money over time; the degree to which nursing home residents can do things for themselves varies from state to state; states vary in the portion of Medicaid (called Med-I-Cal in California) spending they devote to serving the elderly and disabled. 

States are supposed to create programs to help with that hard work of moving home, and to get people with mild and moderate disabilities out of nursing homes. Many state Medicaid directors get nervous about the idea that living at home is now a civil right. 

The Americans with Disabilities Act (ADA) is a 20-year-old law that bans discrimination on the basis of disability. Twelve years ago, the U.S. Supreme Court ruled in Olmstead v. L.C. that people who live in such institutions as state hospitals and nursing homes but who could live successfully on their own have a civil right, under the ADA, to get their care at home. Since then, federal policy was updated in the recent health care overhaul, which says that states need to spend more money on Medicaid programs for people to receive their long-term care at home. But federal law requires states to pay for nursing homes, while community-based care programs are optional.So states only slowly add, or even cut, programs designed to help elderly and disabled people live at home. State officials say they don't disagree in principle, but there's a shortage of wheelchair-accessible apartments and thousands of people on a waiting list.  

Multiple studies have shown that over the long run, home-based care is cheaper. An AARP Public Policy Institute study found that nearly three people can get care at home for the same cost of one in a nursing home. When the Supreme Court established a civil right to home-based care, it specified that it was not an unlimited responsibility for states. It had to be something they could do within existing budgets. 

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Similar, but sometimes different, caregiver problems exist in Australia, Canada, China, Japan, and the United Kingdom. 

In the news in AUSTRALIA: "Experts call for reform as aged care gripes rise."  

CANADA: "Program to fight seniors abuse: Suffering In Silence. Information campaign launched across Quebec."  

CHINA: "Mercy may be shown to the elderly."  

IRELAND: "An 'appalling vista' in our nursing homes.”  

JAPAN: "Protecting the elderly from abuse.” 

SCOTLAND: "Proposal to rein in treatment for elderly 'horrifying'."  

UK: “One in five nursing homes failing to offer 'good' care.”
 

IN THE NEWS: 

The American Society on Aging’s annual conference -- “the largest gathering of a diverse, multidisciplinary community of professionals in aging, health care and education” -- will be held in San Francisco, April 26-30. Reduced early registration is available until Feb. 15. (My application for a Press Pass was denied.) The Conference Schedule at a Glance lists numerous topics and events that should interest anyone concerned with aging and about ageism.  

On Thursday, Feb. 10, 2011, 5:30-7 PM, “Old People Driving”award-winning documentaryby Shaleece Haas, will be shown in Room 470 of UC,B Stephens Hall (See UC Berkeley campus map: http://berkeley.edu/map/maps/CD45.html ; Stephens is located in area 5D.) Note: RSVP is required: email Desi Owens asap at: desiowens@berkeley.edu. Space is limited.