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|A Newsletter of FCA's National Center on Caregiving|
November 23, 2011
Volume XI, Number 22
State Legislation, Policy & Reports
- CA: Adult Day Health Care Settlement Announced More...
- NYC: Settlement With Federal Government Prompts Fears About Service Cuts More...
- MD: Patient-Centered Medical Home Program Pilot Profiled More...
- MA: Legislation Focuses On State's Direct-Care Workforce More...
- GA: Profiles Of State's Medicaid Program More...
- 6 States Receive Community Based Care Transition Program Grants (GA, OH, ME, AZ, MA, IL) More...
Federal Legislation, Policy & Reports
- Supercommittee Fails; Dr. Donald Berwick Resigns From CMS More...
- Report: Caregiver Credits In France, Germany, Sweden Provide Lessons For US More...
- Report: Changes To Social Security Would Be Harmful For Direct Care Workers More...
- Policy Brief: Suggestions For "Selling" Value Of Integrated Care To Stakeholders More...
- Report: Job Quality Effects On Employment, Social Activities, And Caregiving More...
- Report: Italians Rely On Mostly Immigrant Workforce For Caregiving More...
- Report: Gray Tsunami In Canada Or "Apocalyptic Demography?" More...
Research Reports & Journal Articles
- Report: Caregivers For Loved Ones With Alzheimer's Have Higher Health Costs More...
- Report: Policymakers Need To Address Needs Of LGBT Seniors And Caregivers More...
- Report: Will You Still Want Me Tomorrow? The Dynamics Of Families' LTC Arrangements More...
Conferences & Trainings
- Webinar: Creativity, Communication and Dementia, December 8, 12:00pm (PST) More...
- Forum: The Challenges Of Family Caregiving: What Needs To Be Done? More...
- Webinar: National Alliance For Caregiving Innovations In Caregiving Grants, Nov. 29, 3:00PM (EST) More...
- Grant Opportunity: National Institute On Aging More...
Funding, Media & Miscellaneous
- Activities During National Family Caregiver Month More...
- Personal Accounts From Caregivers More...
- Report: How To Pull Together Medicare And Medicaid Data More...
- Lewey Body Dementia Association Survey More...
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A settlement was reached last week between the state of California and Disability Rights California, which had sued the state to block the elimination of Adult Day Health Care as an optional Medi-Cal benefit. The settlement still needs to be approved, however, it postpones the elimination of Adult Day Health Care until February 2012, when a similar program, Community-Based Adult Services (CBAS) will be started for former ADHC participants who are deemed eligible for CBAS. In an interview with Capital Public Radio, a state spokesperson estimated that about half of current ADHC clients will be eligible for CBAS, while other participants will be offered case management. State officials have suggested that In Home Supportive Services (IHSS) may be another form of support for former ADHC participants. However, a recent revenue forecast from the Legislative Analyst's Office suggests that low state revenues may force "trigger cuts" which include a 20% reduction in hours for IHSS. No decisions on the "trigger cuts" will be made until another report is released by the Department of Finance in the middle of December. For more information, visit:
Disability Rights California
California Association for Adult Day Services
Capital Public Radio: "Settlement Keeps Adult Day Health Care in California, But Only for Some"
CA Budget Project: "Statement: Jean Ross on the Legislative Analyst's Office Forecast"
Several weeks ago, New York City agreed to pay a $70 million fine to the federal government after a whistle-blower suggested that New York City improperly approved home health care services in its Medicaid program for the past ten years. Last week, advocates for the disabled sent a letter to CMS as well as the United States Attorney for Manhattan (who had originally brought the lawsuit against the city on behalf of the federal government), suggesting that the city is now over-reacting as a result of the suit and starting to reduce or withhold in-home services. In response, the US Attorney suggested that New York State formulates Medicaid policies, and the Department of Justice only enforces them, while a city representative acknowledged that the city was being "more vigilant" as a result of the settlement. For more information, visit:
The Washington Post recently profiled a primary care practice in Maryland that is taking part in a federal pilot program (along with 51 other primary care practices) to provide a patient-centered medical home. The focus of the program, which serves about 245,000 patients and started in May this year, is to improve the quality of care provided through greater coordination with patients, including longer office hours, same-day appointments for urgent appointments, using electronic health records, and a team approach to coordinating care, which includes following up on referrals. This approach is more costly, though a doctor interviewed also estimates that the practice will receive about $300,000 in payments through the program this year that will help pay for new technologies and staff. For more information, visit:
PHI National reports that a hearing was held in Massachusetts earlier this month focused on legislation (S.45) to assess the adequacy of the state's long-term care workforce. The legislation would create a task force to gather and analyze data on the number of direct-care workers, turnover, and wages and benefits. The members would also be expected to assess the state's current training/credentialing infrastructure and develop policies to ensure there are sufficient number of employees for home and community-based settings. A report would be due by December 31, 2012. For more information, visit:
A recent article in the Atlanta Journal Constitution focuses on the role of Medicaid in paying for long-term care in Georgia. Medicaid currently pays for almost 28,000 Georgians living in nursing homes, and while the state receives 2,200 Medicaid applications a month, more than 40% are denied. Similar to other states around the nation, Georgia has shifted more money to home and community-based services through its Community Care Services Program, which currently serves 12,000 people, however, there are 1,707 people on the waiting list for the program. A mother and daughter are profiled in the story, while the mother was initially declined for Medicaid because of her pension ($3,000 a month from the Dept. of Defense), using a qualified income trust, she was approved for Medicaid, with almost her entire pension check going to the nursing home and Medicaid paying for the remainder. For more information, visit:
Partnerships in six states were recently awarded grants under the Community Based Care Transition Program (CCTP), a demonstration that is part of the Affordable Care Act. Through the program, community-based organizations (CBOs) are partnering with acute care hospitals to implement care transition interventions for people with Medicare who are at high risk of hospital readmission. The goal of the three-year program is to reduce hospital readmissions, test sustainable funding streams for care transitions, and to save money in the Medicare program. CCTP is part of a broader federal campaign, the Partnership for Patients, which aims to reduce hospital-acquired conditions by 40% and hospital readmissions by 20% by 2013. For more information, visit:
On Monday, the members of the Supercommittee announced that they had failed to reconcile differences over whether or not to raise taxes, which became the large stumbling block for the committee moving forward. In theory, the failure of the committee means that $1.2 trillion worth of automatic cuts will begin in 2013, and President Obama said he would veto any legislation "undoing" the 50% of the cuts that would be made in defense spending. On a related note, Dr. Donald Berwick, the chief administrator of the Centers for Medicare and Medicaid Services (CMS), resigned today (effective next Friday) after 42 Republican senators announced earlier this year that they would block his confirmation when his recess appointment expires at the end of the year. Berwick had been in the position for 18 months, spreading his message of health-care reform focused on improving patient experience, improving population health, and reducing costs. According to the Washington Post, the White House plans to appoint Berwick's second-in-command, Marilyn Tavenner, as his replacement. For more information, visit:
Washington Post: "CMS administrator Don Berwick steps down"
Report: Caregiver Credits In France, Germany, Sweden Provide Lessons For US
A number of proposals to ensure the long-term sustainability of Social Security have been suggested during the past several years. Within the context of these proposals and to address the potential for women being more negatively impacted by reforms to Social Security, a recent report by an analyst from the Social Security Administration examines caregiver credit components in retirement programs in three other countries. Caregiver credit programs are designed to support women who have a greater likelihood of leaving the workforce due to caregiving responsibilities (and therefore may receive less from government retirement programs like Social Security). In the United States, in 2008, 11.9% of women lived below the poverty line as compared to 6.7% for men, and rates are even higher for nonmarried (16.9%), widowed (15.4%), and divorced (19.5%) women. Based on his analysis, the author recommends four issues for consideration in designing caregiver credits, including the duration of years an individual will be eligible to receive credits; how credits will be calculated; who will be eligible (mother, father, or both); and whether a person has to leave the labor force completely to receive the credit. A blog posting by the author of the report, John Jankowski, will be featured as part of FCA's 30 Days of Caregiving on November 29th. For more information, visit:
Social Security Bulletin: Caregiver Credits in France, Germany, and Sweden: Lessons For the United States
Report: Changes To Social Security Would Be Harmful For Direct Care Workers
A recent report by the Direct Care Alliance and the Center for Economic and Policy Research analyzes the potential impact on direct care workers if changes are made to Social Security. The author explains that Social Security is especially important to direct care workers because only about one in four participate in an employer-provided retirement program and the housing meltdown has also destroyed an important source of wealth for many Americans. The report analyzes proposals to increase the retirement age to 67 and to reduce the Cost of Living Adjustment, both of which would be harmful for direct care workers. The author includes several policy proposals developed by the Commission to Modernize Social Security, including eliminating the income cap on Social Security (currently, earnings above $106,800 are not taxed); increasing the special minimum benefit to 125% of the poverty threshold; implementing caregiver credits; and increasing the survivor's benefit for widowed spouses. For more information, visit:
DCA/CEPR: "Maintaining and Improving Social Security for Direct Care Worker"
Policy Brief: Suggestions For "Selling" Value Of Integrated Care To Stakeholders
As part of the Affordable Care Act, there is an increased focus on improving care (and reducing costs) for dually eligible beneficiaries (people eligible for Medicaid and Medicare). A recent guide from the Center for Health Care Strategies provides a roadmap for state officials who are considering integrating care for this population. The author explains that finding dually eligible stakeholders may necessitate increased outreach beyond groups that usually provide input. Options for communicating with stakeholders include meetings, webinars, focus groups, project-specific websites, and Requests for Information. The author also suggests that beginning stakeholder meetings with a story that illustrates the need for better integrated care can help provide focus. For more information, visit:
Center for Health Care Strategies: "Communicating the Value of Integrated Care to Stakeholders"
Report: Job Quality Effects On Employment, Social Activities, And Caregiving
A recent report uses data on employed Europeans aged 50-65 to estimate the effect of job quality on participation in the labor market, social activities, and caregiving. Similar to past research, their model finds that women are more likely to be caregivers, and the model also finds that age had a negative impact on whether or not a person is employed. While the model finds that the necessity to provide care did not appear to be a factor of people leaving jobs early, being employed full-time did reduce the chance of being a caregiver. The authors note that this may not account for the possibility of shared obligations within families, financial transfers, access to formal care, and the possibility of work/family arrangements. In addition, while this study is focused on employed seniors, "the burden of informal care is to a large extent carried by inactive and unemployed females of this generation." Participating in social activities increased the likelihood of being a caregiver, and the authors suggest that the positive rewards people receive from social activities may make them more likely to be a caregiver to members of their club, association, or network. For more information, visit:
Centre d'Economie de la Sorbonne: "The social economy of ageing : Job quality and pathways beyond the labour market in Europe"
Report: Italians Rely On Mostly Immigrant Workforce For Caregiving
A recent report analyzes the direct care workforce in Italy through interviews with direct care workers. The authors explain that the public provision of caregiving is fairly limited, and while women had historically served as family caregivers, the changing economy means that fewer women are taking on this role. As a result, the main "pillar" of social care (not medical) for the elderly are the estimated 780,000 Personal Assistants (badanti), who are personally recruited by the family of the care recipient and are hired on an informal basis. It is estimated that 90% of the badanti are foreign workers. The cost of hiring a personal assistant in the underground market is 30-40% less than going through the regular market channels. All of the experts interviewed for the paper explained that the largest issue related to these caregivers is the lack of a regulatory agency to monitor what happens in the home between the worker and care receiver. The personal assistants who were interviewed preferred being directly hired by a family (rather than through a publicly-funded program) because the publicly-funded programs include a Individual Care Plan which specifies few and limited hours of assistance. In addition, there are means tests to qualify for publicly-funded care, meaning the recipient lives in poor social and housing conditions, as compared to working in a private household that has the financial capability to hire direct workers. For more information, visit:
WALQING: "Once there were wives and daughters, now there are badanti"
Report: Gray Tsunami In Canada Or "Apocalyptic Demography?"
An October report examines the current state of long-term care in Canada, with a focus on family caregivers and the estimated $25 billion in "free" care they provide every year. The authors explain that Canada's current system assumes a large amount of family caregiving is available and views the health care system as more of a safety net when family care isn't available or sufficient. While the authors caution that the shifting demographics and higher health care use for older Canadians can be over-blown (labeled as Apocalyptic Demography), they suggest that Canada does need to have a national, transparent conversation about home health care, with a greater focus on the needs of family caregivers as part of the long-term care system. Two possibilities are enacting legislation related specifically to long-term community care, or adding long-term community care to Canada's medicare program. They conclude: "Despite the many calls for the federal government to take a leadership role in establishing formal support for caregivers, to date help has not been forthcoming." For more information, visit:
IRPP: "Population Aging and the Evolving Care Needs of Older Canadians"
Montreal Gazette: "Caregiver shortage 'major cause of concern'"
Report: Caregivers For Loved Ones With Alzheimer's Have Higher Health Costs
A new report from the National Alliance for Caregiving analyzed data on 583 family caregivers taking part in the REACH 1 project who provided care in the home over an 18-month period. The average age of the caregivers was 61.7 years, 58% were white, 23% were African American, and 18% were Hispanic/Latino, 82.8% were female, and the average amount of care provided was 7.9 hours per day. The average duration was 4.3 years, while the average age of the care recipient was 78.7 years old. The authors use data from the Medical Expenditure Panel Survey (MEPS) to compare health care use and costs between caregivers with non-caregiver women. Non-caregivers had 2.6 ER visits per 100 women (per month) as compared to 5.5 visits for caregivers, and doctor trips were also much higher at 95.5 per month (per 100 women) for caregivers as compared to 34.3 for non-caregivers. The authors calculate that the caregiving results in average health care costs of $4,766 more per month for caregivers. For more information, visit:
NAC: "CAREGIVING COSTS: Declining Health in the Alzheimer's Caregiver as Dementia Increases in the Care Recipient"
Report: Policymakers Need To Address Needs Of LGBT Seniors And Caregivers
Caring and Aging with Pride, a project based at the University of Washington School of Social Work, recently released a report which used data from the caregiver module in the BRFSS survey in Washington State as well as interviews with LGBT older adults from across the nation that were coordinated through 11 community-based agencies. The authors estimate that 2% (more than two million) of adults age 50 and older currently self-identify as lesbian, gay or bisexual, and this number will likely double by 2030. In contrast to the general population of caregivers, LGBT older adults had high rates of caregiving for both men (26%) and women (30%). While the authors focus on the challenges faced by LGBT seniors, they also highlight their societal contributions: "Forty-one percent of transgender older adults, 41% of bisexual men, 34% of gay men, and 6% of lesbian and bisexual women participants have served in the military." In interviews, LGBT seniors said their community needs senior housing, transportation, legal services, social events, and supportive long-term care facilities. Policy recommendations include targeting social and health programs for LGBT older adults within programs funded by the Older Americans Act; ensuring economic security through maintaining entitlement programs and extending benefits to same-sex partners; and amending the FMLA for same-sex partners. For more information, visit:
Caring and Aging with Pride: "The Aging and Health Report Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults"
FCA 30 Days of Caregiving Guest Blog from SAGE: "Day 12: Caregiving in the LGBT Community"
Report: Will You Still Want Me Tomorrow? The Dynamics Of Families' LTC Arrangements
A working paper from the Human Capital and Economic Opportunity Working Group at the University of Chicago uses data from 1995-2004 from the Oldest Old Survey to analyze family's long-term care decisions. The authors model three dimensions of care arrangements: the use of each potential care arrangement, the selection of the primary care arrangement, and hours spent in each care arrangement. Their models also distinguish between modes of care, including care provided by a spouse, an adult child or child in law, formal home health care, and institutional care. They find that as the weekly cost of full-time formal home health care increases by $100, the predicted probability of receiving this care decreases by five percentage points and the probability of this type of care being the primary care arrangement decreases by 3.3 percentage points. State Medicaid income limits also were related to care arrangements, for each $1,000 increase in the annual income limit facing unmarried individuals, there was a 4.3 percentage point increase in a lone elder relying on formal home health care (and predicted hours increased 5.7 hours per week), and a 2.1 percentage point increase in relying on institutional care. The effect was smaller for married individuals, but the likelihood of institutional care for married elders was negatively correlated with the income limit. For more information, visit:
HUMCAP: "Will You Still Want Me Tomorrow? The Dynamics of Families' Long-Term Care Arrangements"
Family Caregiver Alliance is sponsoring a webinar: Creativity, Communication and Dementia webinar on December 8, 2011 at 12:00 p.m (PST). Two professionals in the aging field, Drs. Anne Basting and Gay Hanna, will discuss (1) the importance of increasing awareness among arts and aging professionals, family caregivers and others about the link between the arts and wellness in older adults; and (2) TimeSlips, a current program which has been effective with individuals with dementia. For more information or to register, visit:
FCA: "Creativity, Communication and Dementia"
AARP's Public Policy Institute is hosting a forum on December 1, 2011 from 9:00am to 12:00pm in Washington DC at the Columbus Club (Union Station) to discuss how public policies can more effectively address the needs of family caregivers. Susan Dentzer, Editor-in-Chief of Health Affairs is moderating, and guests include Howard Gleckman, Jane Gross, Robert Kane, Carol Levine, Suzanne Mintz, Walter Mosley, Peter Rabins, Jonathan Rauch, and Gail Sheehy. The guests will also discuss how health care professionals can improve support for family caregivers. The event will be webcast for those unable to attend in person. For more information or to register, visit:
AARP PPI: "The Challenges of Family Caregiving: What Needs To Be Done?"
Webinar: National Alliance For Caregiving Innovations In Caregiving Grants, Nov. 29, 3:00PM (EST)
The National Alliance for Caregiving is sponsoring a webinar focused on their grant program, the Innovations in Caregiving, which provides startup funds of $10,000 to five non-profit organizations for new caregiving education and support programs. The proposal deadline is January 27, 2012. For more information, or to register for the webinar, visit:
National Alliance for Caregiving: "Innovations in Caregiving" Webinar
National Alliance for Caregiving: "Innovations in Caregiving" Application
Grant Opportunity: National Institute On Aging
The National Institute on Aging announced a grant opportunity focused on the implications of the economic downturn for health, wealth, and work at older ages (Funding Opportunity Announcement Number PA-12-009). One of the potential topics for a grant includes research on how aspects of the financial crisis have influenced the tradeoff between working and caregiving. The earliest submission date is January 5, 2012. For more information, visit:
National Institute on Aging
Activities During National Family Caregiver Month
A number of organizations have honored family caregivers during the month of November. The Robert Wood Johnson Foundation has featured postings from their grant-funded work focused on caregiving on its Human Capital Blog. The National Family Caregivers Association is offering free posters and brochures, and Suzanne Mintz also gave an interview with PHI National about the relationship between family caregivers and professional caregivers. Family Caregiver Alliance's "30 Days of Caregiving" has featured guest blog posts focused on the new VA Caregiver program, what a family caregiver strike might look like, and today's topic, written by the Executive Director of Care Alliance Ireland, focuses on the experiences of former caregivers.
Personal Accounts From Caregivers
Caregivers have shared a number of touching stories about their experiences during the month of November, and four of their stories are highlighted below.
"The elderly dilemma: Medicare-Medicaid fail middle class families" from the Washington Times. Peter Bella, a retired Chicago Police Officer, wrote a column about his experience caring for his 96-year old mother who has been living with him for the past six years. Bella explains: "The laws, regulations, and qualifications regarding home health care entitlements are confusing, contradictory, arcane, vague, and sometimes, arbitrary and capricious" and concludes that "If something is not changed, large numbers of us, or our children, will be faced with severe financial burdens or the dilemma of making quality of life choices that satisfy no one."
"Long term care: 'My aunt fell through cracks in the system'" from The Telegraph. This article by Emma Wall chronicles the story of Daren Birch and his struggle to get appropriate care for his aunt who is in the advanced stages of Alzheimer's. Despite being told that his aunt needed an EMI (Elderly Mentally Infirm) home, she was placed in a residential care home without the proper support for a year. While she was eventually moved to the appropriate setting, Birch is still appealing decisions by the local government primary care trust to not pay for his aunt's care.
"A Note from a Caregiver" from the VA's blog, VAntagePoint. (This was published earlier this summer.) Jennifer Conlon, the wife of a veteran who returned from two tour in Iraq as an infantryman in the Army, discusses her experience shifting from a wife to a caregiver. She explains that when she heard about the VA's new caregiver program for post 9/11 veterans, "I almost didn't apply. I've been so used to not being taken seriously by people, friends and family included, about my husband's condition." As part of the application process, nurses from the VA came to their house for a home visit. While she initially nervous, she explains: "The visit took thirty minutes at the most and again was enjoyable. I had more support and I felt so validated, finally, people believe me, they saw our struggles, they didn't try to downplay anything, I didn't have to fight for help, I didn't have to plead my case, I didn't have to defend my husband's condition or actions. Finally I wasn't alone anymore, finally I have a support system."
Committed to Randol: One Family's Long Term Care Journey from Kaiser Health News
This video profile of Randol Brock, and his sister-in-law, Doris, who has been his primary caregiver since 1999 is a touching and honest interview about the realities of caregiving. Randol had a high fever as a child that caused brain damage, and while doctors predicted he wouldn't live long, he is now 52 years old. Doris became Randol's caregiver in 1999 when his mother passed away. However, about three years ago, Randol's health declined and last December, Doris made the decision to move Randol to a group home.
Report: How To Pull Together Medicare And Medicaid Data
Earlier this summer, the California Medicaid Research Institute at the University of California released a report focused on California's Home and Community-Based Services waivers from 2005-2008. The institute also released a report that described their work creating a database with data from Medi-Cal and Medicare on claims, assessment, and enrollment for both programs. The report explains how the authors acquired the data, as well as the contracts and data use agreements that enabled the sharing of Medi-Cal and Medcare data, and how the Institute complied with these agreements. For more information, visit:
"Studying Recipients of Long-Term Care Services and Supports: A Case Study in Assembling Medicaid and Medicare Claims and Assessment Data in California"
CA Medicaid HCBS Waivers, Benefits, Eligibility From 2005-2008
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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