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|A Newsletter of FCA's National Center on Caregiving|
October 26, 2011
Volume XI, Number 20
State Legislation, Policy & Reports
- CO:One Of Four States Without Mandatory Reporting Of Suspected Elder Abuse More...
- MO: Legislation Would Allow Family Members To Make Health Care Decisions More...
- FL: Hospitals And Nursing Homes Work To Reduce Readmissions More...
- WI: Proposed Legislation Eases Some Regulation On Nursing Homes More...
Federal Legislation, Policy & Reports
- CLASS Program Suspended By HHS But LTC Financing Needs Continue More...
- Witnesses Testifies Hearing "At Your Age" When She Applied For Employment More...
- Super Committee Holds Hearing, Deadline Draws Near More...
- Australia: Report On 2.6 Million Australian Family Caregivers More...
- Canadian Elder Standard Measures Cost Of Living And Long-Term Home Care More...
Research Reports & Journal Articles
- Report: Paying Family Caregivers In CA's Medicaid Program Is Less Expensive More...
- Research Examines Divorce And Genetic Ties In Making Caregiving Decisions More...
- Dissertation: Pathways Of Adult Child Caregiver's Roles And Relation To Health More...
- Paper: Invest In Home-Based Health Care And Early Childhood Education More...
- Caregivers Adopt New Ways To Communicate When Loved Ones Have Dementia More...
Conferences & Trainings
- Conference: n4a 2012 Conference Now Accepting Proposals More...
- Webinar: Integrating Physical And Behavioral Health For Medicaid Beneficiaries, November 15, 2:00-3:30 PM (ET) More...
Funding, Media & Miscellaneous
- Daughter Gives Personal Account About Transition Challenges For Father More...
- Patients With Cancer Have Higher Bankruptcy Rates More...
- Talking Health: Long-Term Care More...
- Scan Foundation Releases Six Fact Sheets On Medicare More...
- Lewey Body Dementia Association Survey More...
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The Denver Post recently profiled the efforts of an 82-year old advocate who is lobbying for Colorado to adopt mandatory reporting requirements for social workers and physicians who suspect elder abuse. Legislation mandating the reporting has been introduced on multiple occasions during the past 13 years but has not been enacted, including a 2005 veto by then Governor Bill Owens. A district attorney profiled in the story supports the law, and since opening an office in February 2010, has prosecuted 35 cases of elder abuse. Colorado's Adult Protective Services received 10,846 reports in FY 2010-11 and opened 4,481 cases. Caseworkers had an average caseload of 31 per worker, though the national recommended standard is 25. For more information, visit:
Denver Post: "Colorado advocates push mandatory reporting law for elder abuse"
Forty-four states currently have "family consent" laws that allow family members to make health care decisions on behalf of a family member. A Missouri state representative introduced legislation this year to also allow Missourians to make health care decisions for a family member. Under the introduced legislation, if a person is ill and doesn't have an advanced directive, the bill would establish a default order of family members who could make decisions. Critics of the bill suggest that family members may not have the best interests of the patient in mind, while a hospital social worker from St. Louis was concerned that domestic partners were excluded from the bill. The representative plans to reintroduce the legislation in January 2012. For more information, visit:
KCUR: "End-of-Life Decisons: Family Consent Law Proposed"
The St. Petersburg Times recently focused on partnerships in Florida between nursing homes and hospitals in an effort to address preventable readmissions to hospitals. As part of the Affordable Care Act, hospitals will be penalized in the future for what are considered avoidable readmissions by Medicare. The FL Hospital Association attempted to address readmissions through technology that tracks patients who return to the hospital within 15 days, an initiative that has led to an 11% drop since 2008 in readmissions for heart attack, heart failure, coronary bypass surgery, hip replacement and pneumonia. In Orlando, BayCare Health System studied data on readmissions to its hospitals and found wide variation in readmissions from single digits to more than 80%, and also found that more than half of heart failure patients at one nursing home weren't being seen by a doctor before being readmitted to the hospital. At St. Anthony's Hospital, a partnership with a local nursing home addressed readmissions for heart failure patients by screening patients who were at risk for sepsis, essentially eliminating sepsis as a cause of readmissions. A partnership in Tampa Bay is piloting a uniform discharge form with check boxes (to prevent mistakes from illegible handwriting), and a diagram of a body (to identify potential skin sores), with the intent of ensuring that the entire health team is operating with the same information. For more information, visit:
A proposed bill in Wisconsin would make a number of changes to how nursing homes are regulated, with the ultimate result of nursing homes paying an estimated $1.5 million less a year in forfeitures. Under current law, the state Department of Health Services enforces both state and federal rules for nursing homes, and can issue duplicate penalties under federal and state laws. This law would force the department to issue penalties under either federal or state laws- but not both. Other provisions include a 120 day limit for the department to asses forfeitures (currently there isn't a limit), more time to pay fines (60 days instead of 10 days), more time to appeal violations (60 days instead of 10 days), more power for the state department to sue for federal rule violations (currently they can only sue under state rule violations), and more reasons for the state to revoke nursing home licenses. A law enacted in January of this year was viewed by consumer advocates as favorable to nursing homes in Wisconsin because it restricted the ability to sue for violations when a resident is hurt or killed. For more information, visit:
After several weeks of speculation, Secretary Sebelius announced earlier this month that the CLASS program was being suspended after 19 months of analyzing models and ways to make the program work within the parameters of the law. The accompanying report explained the various models and assumptions that were considered. These include increasing the minimum working periods (from three to five years); increasing the minimum income required to participate (from $1,120 to $12,000 annually); only providing the $50 daily benefit for up to five years, then reducing it to $10; increasing the benefit to a maximum amount of $150 if a person went without claiming benefits for a number of years, and other program changes. The report focuses on the legal issues with changing the program and the potential negative effects on enrollees if eventual lawsuits ended the program. Republican lawmakers have suggested that CLASS should be repealed, while messages from the White House about the future of CLASS have been less clear. While the future of CLASS remains unclear, there is near universal agreement on the need for improvement to the current system of financing long-term care. For more information, visit:
NPR's On Point: "The Future of Elder Care"
HHS: "A Report on the Actuarial, Marketing, and Legal Analyses of the CLASS Program"
Witnesses Testifies Hearing "At Your Age" When She Applied For Employment
At a hearing held earlier this month, several witnesses discussed the importance of programs funded under the Older Americans Act. Gail Ruggles, a witness from Vermont, gave a stirring presentation about the real-life impact of the Senior Community Services Employment Program (SCSEP) in keeping her out of poverty, explaining, "I really don't like public aid offices, the staring, the plastic chairs, the guarded looks from the interviewers, and the sense of having to defend myself and my life's failings and ask for a handout... But the office of Vermont Associates was a different kind of aid station." Ruggles explained that participating in SCSEP increased her self-esteem, employability, skills, and led to a full-time job. Other witnesses at the hearing discussed the negative effects of using the chained CPI for Social Security benefits and NCOA's "One Away" campaign that has highlighted the plight of 13 million seniors who are one life event away from poverty. Senator Al Franken explained that he will be introducing legislation to include a home care consumer bill of rights with additional protections for people using HCBS. For more information, visit:
Hearing: "The Recession and Older Americans: Where Do We Go from Here?"
Super Committee Holds Hearing, Deadline Draws Near
The Super Committee, a group tasked with finding at least $1.2 trillion in budget cuts, is nearing its deadline of November 23. At a hearing today, Senator John Kerry (D-MA) suggested that the work of the committee may have to be repeated in two or three years if the changes are not significant. If the committee doesn't come up with a plan, or if Congress won't approve it, then across-the-board cuts will be enacted within a year. Media reports suggested that Democrats put forth a plan to cut $2.5 to $3 trillion in savings with an equal mix of spending cuts and revenue increases, and with $200-300 billion in new stimulus spending. Family Caregiver Alliance, the National Respite Coalition, and 29 other organizations sent a letter earlier this week asking the committee to refrain from cutting funding for programs that serve family caregivers. For more information, visit:
CBS News "Can the supercommittee save the economy?"
"Letter to Super Committee on Behalf of Family Caregivers"
Australia: Report On 2.6 Million Australian Family Caregivers
The Australian government recently released 2009 data on the country's 2.6 million family caregivers (defined as somebody aged 15 or older providing ongoing caregiving for 6 months or more). Twenty-nine percent of caregivers identified themselves as the primary caregiver, defined as the person providing the most assistance, and women were about twice as likely to fill this role (5% women, compared to 2% for men). One-third of caregivers reported having a disability themselves, as compared to 16% of non-caregivers who reported having a disability. Forty percent of primary caregivers were employed as compared to 66% of non-caregivers, and only nine percent of primary caregivers who cared for 40 hours a week were also able to work full time. Caregivers aged 15 years and older (49%) were more likely than non-caregivers (37%) to live in a household with income in the bottom two income quintiles, and 62% of primary caregivers were in the two bottom income quintiles. In terms of duration, 12% of primary caregivers had been caring for less than two years, 28% had been caring for two to four years, and 6% had been caring for 25 years or more. Of the 98,300 primary caregivers who reported a need for respite care, only 36% had ever used it. Forty percent of primary caregivers providing 40 hours or more of care (per week) were likely to frequently feel worried or depressed, as compared to 27% for caregivers who provide 20 hours or less of care. Twenty-five percent of primary caregivers reported losing touch with their existing friends, while 61% of caregivers with a spouse or partner (who isn't the care recipient) reported that the relationship had been affected. For more information, visit:
Australian Bureau of Statistics: "Caring in the Community, Australia, 2009"
The Australian: "Study highlights the pain of primary carers"
Canadian Elder Standard Measures Cost Of Living And Long-Term Home Care
A research paper from the Social and Economic Dimensions of an Aging Population program at McMaster University (SEDAP) provides the after-tax income needed for Canadian elders living in five cities, known as the Canadian Elder Standard (CES). The authors examine the typical expenses for food, shelter, medical, transportation, miscellaneous living items, and home-based long-term care for elders. The Canadian standard is similar to a U.S. measure, the Elder Economic Security Index. The CES for the five cities ranges from $11,346 (single) $15,454 (couple) in Montreal to $17,213 (single) $21,636 (couple) in Toronto (all figures are in Canadian dollars). The authors explain: "From among a Canadian elder's basic expenses (shelter, food, transportation, medical care, miscellaneous and home-based long-term care), the costs associated with home-based long-term care threatened to be the most severe. This expense is also, unfortunately, the least predictable and the most likely to affect poor elders." For more information, visit:
SEDAP: "The Canadian Elder Standard Pricing the Cost of Basic Needs for the Canadian Elderly"
Report: Paying Family Caregivers In CA's Medicaid Program Is Less Expensive
A study in the August issue of the Gerontologist uses 2005 Medicaid claims and In-Home Supportive Services (IHSS- California's personal care program in Medicaid) data to compare costs between Medicaid recipients with paid spousal caregivers vs. recipients with other relatives or unrelated individuals as their caregivers. The authors find: "The rates of ambulatory care-sensitive hospital admissions and Medicaid-covered nursing home placements were at least comparable among IHSS recipients' with spouse, parent, other relative, or nonrelative caregivers....In no comparison did those with spouse providers have worse outcomes than those with nonrelative providers." The authors conclude that paying spouses, parents, and other relatives (through IHSS) had no financial disadvantages and some advantages (lower average Medicaid expenditures and fewer nursing home admissions) and suggest that their findings support honoring recipient's and family member's preferences for this type of arrangement. For more information, visit:
The Gerontologist: "Allowing Spouses to Be Paid Personal Care Providers: Spouse Availability and Effects on Medicaid-Funded Service Use and Expenditures" (abstract is free)
Research Examines Divorce And Genetic Ties In Making Caregiving Decisions
Several professors at the University of Missouri are researching the effects of divorce on decision making around caregiving. Dr. Teresa Cooney and Dr. Christine Proulx are co-investigators on an exploratory study that will look at women who are caregivers for their ex-husbands and the unique challenges these women face. Dr. Lawrence Ganong is studying decision-making related to divorce, remarriage, and care for older relatives. In a study with Dr. Marilyn Coleman, study participants were presented with hypothetical caregiving scenarios, and while the majority of participants said biological factors are relevant, "they do not automatically require adult children to help older relatives." Relationship quality, a history of mutual assistance, and the availability of resources all influence caregiving decisions. For more information, visit:
Press Release: "Relationships More Important than Genetic Ties When Deciding Who Cares for Aging Family Members, MU Researchers Say"
"Caregiving for an Ex: The Experience of Women Providing Care for Ex-Husbands"
Dissertation: Pathways Of Adult Child Caregiver's Roles And Relation To Health
A dissertation by Dr. Amanda E. Matzek, released earlier this summer, examined pathways of adult child caregiver's roles and their relation to the psychological and physical health of the caregivers. The author analyzes data on 1,300 adult child caregivers (from the Health and Retirement study) and finds strong evidence for a 4-class model of caregivers' role pathways.
The four pathways are:
1) Married, Working Caregivers (22.5%);
2) Married, Retired Caregivers with Co-Residing Child (12.5%);
3) Married, Retired Caregivers (30.5%); and
4) Not Married, Retired Caregivers (34.6%).
Matzek finds that caregiver's experiences are different based on their role pathways: "For example, using descriptive findings, Married, Working Caregivers (pathway I) often reported the most optimal psychological and physical health outcomes followed by Married, Retired Caregivers (pathway III), Married, Retired Caregivers with Co-Residing Child (pathway II) , and Not Married, Retired Caregivers (pathway IV). Based on regression findings, Married, Working Caregivers (pathway I) reported less problematic changes in psychological and subjective physical health and more problematic changes in blood pressure compared to one of the caregiver pathways." In her conclusion, she explains, "Overall, study findings inform family members about the unique long-term challenges experienced by adult child caregivers' and provide insight into what types of caregivers may be most at risk of poorer psychological and physical health." For more information, visit:
Dr. Matzek: "The Impact of Family and Non-Family Roles on Caregiver Health Over Time"
Paper: Invest In Home-Based Health Care And Early Childhood Education
A recent working paper from the Levy Economics Institute at Bard College suggests that spending an additional $50 billion on social care provision- both early childhood education and home health care- would provide strong dividends for both the care recipients and the newly employed care providers. The authors explain that there is a current unmet need for early childhood education, and research has found strong returns on investing in early childhood education. Similarly, while family caregivers provide the majority of long-term care, this also comes with costs, including absenteeism and/or total exit from the labor market. By injecting $25 billion into existing programs (not creating new government programs), the authors' model finds that 1.2 million jobs would be created, with 45% of jobs going to workers from households with income below $39,000 a year. For more information, visit:
Levy Economics Institute: "Unpaid and Paid Care: The Effects of Child Care and Elder Care on the Standard of Living"
Caregivers Adopt New Ways To Communicate When Loved Ones Have Dementia
A survey by the National Family Caregivers Association finds that family caregivers biggest fear is a decline in their loved one's general health and physical decline, and their second biggest fear is Alzheimer's taking away their loved one's ability to communicate. The online survey of 674 family caregivers for people with Alzheimer's found that caregivers adopted new ways to communicate (71%); and feel they have become better communicators (76%). Ninety-two percent of female caregivers said they rely on observing facial expressions to communicate, as compared to 82% for men. Other communication strategies include body language (79%) and using pictures/photos (66%). African-American (81%) and Hispanic (80%) caregivers were more likely to use alternative communication methods as compared to Caucasians (69%). For more information, visit:
NFCA: "New Survey Discusses Impact of Alzheimer's Disease on Family Caregivers"
The National Association of Area Agencies on Aging is now accepting proposals for its conference that will take place in Denver, Colorado, from July 7-11, 2012. The deadline for proposals is November 16th, 2011. For more information, visit:
N4a website: "Call for presentations open"
The Center for Health Care Strategies, Inc. is presenting a webinar on November 15 that will address options for states to integrate physical and behavioral health services within coordinated delivery systems. Participants will learn about strategies in TN, VT, and Arizona. Speakers include Allison Hamblin, Director of Complex Populations at CHCS; Jeanne James, MD, Medical Director, TennCare; Beth Tanzman, Assistant Director, Vermont Blueprint for Health; and Kristin Frounfelker, Behavioral Health Administrator, Arizona Health Care Cost Containment System. For more information, or to register, visit:
CHCS: Integrating Physical And Behavioral Health For Medicaid Beneficiaries
Daughter Gives Personal Account About Transition Challenges For Father
Sarah Stephens recently wrote a poignant personal account of the challenges faced by older Americans and their caregivers when they are "shuttled" between different institutions. Her father was suffering from a form of senile dementia for ten years, and when his wife passed away, he experienced greater confusion and anxiety than he ever had before. After a hip fracture at his assisted living facility, Stephens and her sister approved surgery, because of concerns that he would not stay in bed for six months to let the bone heal naturally. While the surgery was "successful," it increased his agitation to the point that a hospital staff member needed to be with him 24 hours a day. A social worker called after 12 days to notify Stephens that her father was being transferred to a hospital in Massachusetts to have his medications "adjusted."
When Stephens arrived at the hospital and spoke with the doctor conducting the discharge, he answered her question about "care and comfort" care (her father had signed an end-of-life directive stating he did not want heroic measures adopted) by suggesting that "I'm sorry, but because of my own personal and religious beliefs, I am not able to discuss that with you."
Her father was then transferred to a mental hospital in Massachusetts, where an aide was surprised to see the staples holding the hip incision site together, and a social worker speculated that her father's transfer may have been the result of their marketing person's recent visit to the Maine hospital. After a few days at this hospital (which Stephens suggests was to meet the three day minimum to get paid by Medicare), her sister was called to inform them that their father was being transferred to another hospital. At this hospital, her father was finally given hospice care, and he passed away on January 2, 2011.
Stephens concludes: "In the four weeks prior to his death, my father lived under the care of five different institutions in two states. Only the last place, the hospice, appeared willing or able to provide care and comfort to a man who was obviously at the end of his life. Each facility admitted its failure to address my father's needs by moving him on; each transition increased his stress and suffering. It was torture for me and my sister to watch." For more information, visit:
Wbur.org "My Father's End-Of-Life Treatment: Not What He Had In Mind"
Patients With Cancer Have Higher Bankruptcy Rates
Kaiser Health News recently focused on the increased costs associated with continuing advances in cancer treatment. She cites recent AHRQ research that found 13.4% of adults under the age of 65 who had cancer spent more than 20% of their income on health care, including premiums, as compared to 9.7% for people with other chronic conditions and 4.4% for people with no chronic conditions. In a study of cancer patients in western Washington state, .5% had declared bankruptcy in the first year after diagnosis, with 1.9% having declared bankruptcy within five years of diagnosis, as compared to .28% for the general population. Dr. Scott Ramsey, author of the bankruptcy study, explains that while people have job-based insurance, they may lose it if they can't keep working during treatment. Dr. Yousuf Zafar suggests that some drugs can be administered in pill or IV form, and an IV infusion in the doctor's office may be less expensive. For more information, visit:
Kaiser Health News: "When Battling Cancer, Patients Often Face Hefty Expenses"
Talking Health: Long-Term Care
Lynn Friss Feinberg from the AARP Public Policy Institute and Larry Minnix, from LeadingAge, recently participated in an episode of Talking Health to discuss long-term care options with Mike Gilliam. The episode is airing on CUNY-TV in October and is also available on the Commonwealth Fund Website. During the show, they discuss the importance of people retaining their independence, dignity, and activities, regardless of their setting and the importance of using a person and family-centered approach to long-term care. The episode also features visits to long-term care facilities and interviews with residents. For more information, or to watch the episode, visit:
CUNY-TV "Talking Health"
Scan Foundation Releases Six Fact Sheets On Medicare
The Scan Foundation released six fact sheets in September that focus on Medicare beneficiaries, chronic conditions, and spending on Medicare. Data Brief No. 25 compares health service utilization for seniors with both chronic conditions and functional impairments and compares them to seniors with only chronic conditions. Data Brief No. 24 analyzes spending on seniors and is broken down by the presence of chronic conditions and functional impairment. Data Brief 23 describes the distribution of seniors with chronic conditions and functional impairment between Medicare's spending quintiles. Data Brief 22 compares Medicare spending on seniors with chronic conditions and functional impairments to seniors with only chronic conditions. Data Brief 21 compares the proportion of dually eligible seniors with both chronic conditions and functional impairment to seniors who are only eligible for Medicare. Data Brief 20 focuses on the prevalence of functional impairment among seniors by the number of chronic conditions. For more information, visit:
Scan Foundation Publications
Lewey Body Dementia Association Survey
The Lewey Body Dementia Association (LBDA) is conducting a survey to assess if there are differences in how grief is experienced by caregivers for individuals with Lewy bodies, Alzheimer's disease, Parkinson's disease with and without dementia, and frontotemporal degeneration. The survey will also assess the well-being and quality of life for caregivers of individuals diagnosed with the neurodegenerative diseases. Internet access is required to participate in the study, and LBDA needs 500 caregivers who are currently providing care for each different disease that is being studied. For more information, or to participate, visit:
Neurodegenerative Disease Caregiver Study
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The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, contact Policy_Digest@caregiver.org or visit the Family Caregiver Alliance website at www.caregiver.org.
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