This policy note reports the first findings from a yearlong effort to follow the lives and challenges encountered by several dozen representative older Californians in Los Angeles, San Diego, San Francisco and Santa Clara who are enrolled in Medicare and Medi-Cal and who receive in-home and community care.
The documentary project comes as California lawmakers consider additional cuts to a network of services that help seniors remain "safely in their homes" — the stated goal of these public programs and the way in which an overwhelming number of Americans say they want to age.
The policy note, "Holding On: Older Californians with Disabilities Rely on Public Services to Remain Independent," shows seniors struggling to live functional lives in the face of already reduced caregiving hours. For example:
Caring for the caregivers
Sara cares for her disabled son and husband, whose heart disease, diabetes, incontinence and limited mobility require 24-hour care. There's help from In-Home Supportive Services (IHSS) and other family members, but Sara is the primary caregiver. Now, her back is acting up. She's been delaying seeing a doctor to take care of her own needs — who will care for her family if she's hospitalized?
Paralyzed by polio, Mary breathes with the help of a ventilator and gets around in a wheelchair. She needs help to dress, bathe, use the toilet and eat. She's created an elaborate system to meet her needs, using maximum IHSS hours of support and offering room and board to another caregiver in return for care. Mary's happy with her life and rates her health as "excellent," but she knows that even a small change in the delicate balance of her care system will send her to a nursing home.
Incapacitated by stroke and diabetes and confined to a wheelchair, Jack spent time in a nursing home a couple of years ago, and he's not in a hurry to go back. In the nursing home, he felt unsafe and more isolated than he does in his own house with support from IHSS. Jack's a realist. He knows a nursing home may be in his future again, but he wants to choose when and where he'll go.
According to the researchers, all participants in the study are aware that the networks of care they've cobbled together could easily unravel, and most say they'd rather "make do" by eating less often, letting their homes become less safe or allowing their medical conditions to worsen than give up their independence and go to a nursing home — the likely scenario if they lose the in-home services they now rely upon.
"These seniors are using every sort of innovation and self-deprivation to make do," said Steven P. Wallace, the study's senior author and associate director of the UCLA Center for Health Policy Research. "They have nowhere to turn if their fragile care systems are further undermined.
"Policymakers need to see the faces of these vulnerable Californians as they crunch the numbers in budget discussions," Wallace added. "Further cuts are an assault on their independence. Slashing in-home and community care will also increase total health care costs as these seniors increasingly use emergency room care, are hospitalized or enter institutions — under conditions that could have been prevented."
Budget cuts looming
California, which is home to the largest number of older adults in the country, has several programs funded by federal, state and local dollars to assist low-income adults with disabilities. Proponents of these programs say that while such care isn't perfect, it is far less expensive and more humane than the alternative — placing seniors in publicly financed nursing homes.
Yet, IHSS program-hours were trimmed by 3.6 percent in January 2011, and they face further across-the-board cuts of 8.4 percent, plus additional targeted reductions in the governor's proposed budget. Adult day health care centers are slated for elimination, and supplemental security income cash benefits are to be reduced for single low-income aged and disabled individuals.
All the older adults in the study receive IHSS support, ranging from 20 hours of in-home help each month to the maximum of 283 hours per month. Most need help with household tasks, such as cleaning and cooking, and personal tasks like getting dressed or taking medications. Many require help getting in and out of bed, bathing and using the toilet. Some who might benefit from adult day health care or other supportive programs are unable to participate because of limited mobility or lack of transportation.
"California's current system to support old and young adults with disabilities at home operates in silos and is not person-centered," said Bruce Chernof, M.D., president and CEO of the SCAN Foundation, which is funding the study. "The Brown administration has an important opportunity to design a more stable, integrated, efficient and person-centered system that can meet the needs of these vulnerable residents throughout the state."
Read the policy note: "Holding On: Older Californians with Disabilities Rely on Public Services to Remain Independent."
The SCAN Foundation is an independent nonprofit foundation dedicated to advancing the development of a sustainable continuum of quality care for seniors that integrates medical treatment and human services in the settings most appropriate to their needs, and with the greatest likelihood of a healthy, independent life. The foundation supports programs that stimulate public engagement, develop realistic public policy and financing options, and disseminate promising care models and technologies.
The UCLA Center for Health Policy Research is one of the nation's leading health policy research centers and the premier source of health-related information on Californians.
For more news, visit the UCLA Newsroom and follow us on Twitter.
Nancy Brands Ward | EurekAlert!
Smart Data Transformation – Surfing the Big Wave
02.12.2016 | Fraunhofer-Institut für Angewandte Informationstechnik FIT
Climate change could outpace EPA Lake Champlain protections
18.11.2016 | University of Vermont
A multi-institutional research collaboration has created a novel approach for fabricating three-dimensional micro-optics through the shape-defined formation of porous silicon (PSi), with broad impacts in integrated optoelectronics, imaging, and photovoltaics.
Working with colleagues at Stanford and The Dow Chemical Company, researchers at the University of Illinois at Urbana-Champaign fabricated 3-D birefringent...
In experiments with magnetic atoms conducted at extremely low temperatures, scientists have demonstrated a unique phase of matter: The atoms form a new type of quantum liquid or quantum droplet state. These so called quantum droplets may preserve their form in absence of external confinement because of quantum effects. The joint team of experimental physicists from Innsbruck and theoretical physicists from Hannover report on their findings in the journal Physical Review X.
“Our Quantum droplets are in the gas phase but they still drop like a rock,” explains experimental physicist Francesca Ferlaino when talking about the...
The Max Planck Institute for Physics (MPP) is opening up a new research field. A workshop from November 21 - 22, 2016 will mark the start of activities for an innovative axion experiment. Axions are still only purely hypothetical particles. Their detection could solve two fundamental problems in particle physics: What dark matter consists of and why it has not yet been possible to directly observe a CP violation for the strong interaction.
The “MADMAX” project is the MPP’s commitment to axion research. Axions are so far only a theoretical prediction and are difficult to detect: on the one hand,...
Broadband rotational spectroscopy unravels structural reshaping of isolated molecules in the gas phase to accommodate water
In two recent publications in the Journal of Chemical Physics and in the Journal of Physical Chemistry Letters, researchers around Melanie Schnell from the Max...
The efficiency of power electronic systems is not solely dependent on electrical efficiency but also on weight, for example, in mobile systems. When the weight of relevant components and devices in airplanes, for instance, is reduced, fuel savings can be achieved and correspondingly greenhouse gas emissions decreased. New materials and components based on gallium nitride (GaN) can help to reduce weight and increase the efficiency. With these new materials, power electronic switches can be operated at higher switching frequency, resulting in higher power density and lower material costs.
Researchers at the Fraunhofer Institute for Solar Energy Systems ISE together with partners have investigated how these materials can be used to make power...
16.11.2016 | Event News
01.11.2016 | Event News
14.10.2016 | Event News
02.12.2016 | Medical Engineering
02.12.2016 | Agricultural and Forestry Science
02.12.2016 | Physics and Astronomy