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|A Newsletter of FCA's National Center on Caregiving|
January 25, 2012
Volume XII, Number 2
State Legislation, Policy & Reports
- NJ: Funding Cuts Trickle Down To Local Services That Enable Aging In Place More...
- NY: Federal Report Criticizes State's Oversight Of Developmentally Disabled More...
- WA: Legislation Introduced To Provide Paid Leave More...
- FL: Report On Florida's Move To Managed Care Raises Questions More...
- NASUAD: State of the States Survey 2011 More...
- CA: Impact Of Governor's Proposed Budget On Seniors And People With Disabilities More...
Federal Legislation, Policy & Reports
- Article Explains Importance Of Health Literacy And Current Efforts To Improve More...
- Op-Ed: "Take The Fear Our Of Paying For Elder Care" More...
- UK: Pilot Named "A Good Death" Envisions Larger Role For Landlords More...
- Canada: Report Suggests Current System Of Supports For Caregivers Is Limited More...
Research Reports & Journal Articles
- Report: 55% Of Caregivers Are Overwhelmed By Amount Of Care They Provide More...
- NIA Report Gives Update On Alzheimer's Research in 2010 More...
- Study: Medicare Chronic Special Needs Plan Reduces Hospitalization More...
- Study: 5% of U.S. Population Accounts For 49% Of US Health Care Spending More...
Conferences & Trainings
- Graduate Internship With National Council On Aging More...
- Graduate Internship With NASI, In Partnership With CDF And CBPP More...
- Eisner Prize: $100,000 Cash Award To Recognize Uniting Multiple Generations More...
- Health Technology Healthy New Year Video Challenge More...
Funding, Media & Miscellaneous
- New Poster: Caregivers Should WAVE: Wash Ask Questions Vaccinate Ensure Safety More...
- Report Examines Financial Obligation Attitudes Of Generation X, Y, And Boomers More...
- GAO: State Regulation Of Death Care Industry Varies More...
- Report: Large Difference Between Involvement And Engagement For Seniors More...
- Clinical Trial Recruiting Stroke Patients More...
- University of Washington Study: (LIFT) Life Improvement Following Traumatic Brain Injury More...
- Lewey Body Dementia Association Surveye More...
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An article in the New Jersey Herald examines a reduction in state funding to a local, publicly-owned and operated nursing home, which will likely result in cuts to other supportive services, including Meals on Wheels, an adult day center, hospice, and respite services. The state's funding for the nursing home, (through Medicaid), was reduced by $295,690 this year, almost a 50% reduction from the previous year. The state funding requires the local nursing home to grant at least 10% of the money to local supportive services like Meals on Wheels. In the past year, the local government decided to supplement this 10%, with an additional $67,500, however, if they wanted to grant the same amount for 2012, they would need to increase their supplement by almost $100,000. The County Administrator explained that comparing the various program's effectiveness at keeping people out of nursing homes is difficult: For more information, visit:
New Jersey Herald: "Funding cuts would hit services for the elderly"
The New York Times reports that HHS released a report earlier this month that was critical of New York's oversight of programs serving the disabled. In the report, HHS criticized the fact that the Commission on Quality of Care and Advocacy for Persons with Disabilities as well as the Office for People with Developmental Disabilities both report to the governor's office, which is unlike most other states where the agencies are independent. The Times has been examining New York's approach to serving the disabled and the lack of oversight of these programs during the past year as part of a series, "Abused and Used." For more information, visit:
Legislation was introduced earlier this month in the state of Washington that would mandate paid sick leave starting in January 2013. The legislation distinguishes between employer sizes, for smaller employers, employees would accrue one hour of leave for every forty hours worked, while employees at larger employers would accrue one hour for every thirty hours worked. Depending on the type of employer, employees can "carry over" some earned leave year-to-year. Employees cannot take leave until they have worked at least 180 days. The leave can be used
for caregiving for a relative, which is broadly defined, though the proposed legislation does not include caring for a sibling. For more information, visit:
A report from the Health Policy Institute at Georgetown University analyzes Florida's plans to use two waivers to convert its Medicaid long-term services and supports to a managed care program. The authors highlight several key issues as Florida moves forward, including existing wait lists with almost 27,000 Floridians. They note: "Therefore, it appears that the initial choice for many people who newly qualify for long-term care services will continue to be between nursing facility services or a waitlist for community-based services." The authors also suggest that Florida's implementation timelines may be overly optimistic, and note that other states have succeeded when they have involved stakeholders, but that "Consumer involvement has not been a prominent feature of the
planning process for Florida's Long-Term Care Managed Care program." For more information, visit:
NASUAD's "State of the States Survey 2011" was recently released and states report that they are working in the midst of several changes, including a shift to managed care, consolidation of state agencies, and ongoing budget strains. Six themes identified by the authors include a loss of historical knowledge, agency restructurings, a shift to managed care in Medicaid long-term care, some interest in the Affordable Care Act, and shrinking budgets contrasted with increased demand for services. For almost 30% of the states, funding from the Older Americans Act comprises between 26 and 50% of their overall funding. The authors also note that "...rising costs of living and the extended recession are negatively impacting family capacity to deliver such supports to older adults and persons with disabilities, resulting in higher demand for publicly-financed services." For more information, visit:
Article Explains Importance Of Health Literacy And Current Efforts To Improve
An article in Health Affairs explains the importance of health literacy as a large factor in the quality and cost of health care and also provides an update on federal initiatives designed to improve health literacy. The authors cite a 2003 study on adult literacy that found only 12% of Americans are proficient enough to understand and use health information effectively, while more than 1/3 of Americans are considered "basic" or "below basic," meaning they may fail to understand warnings on over the counter medicine. Efforts to address health literacy include medication counseling (one study found fewer medication errors as a result), and training doctors on communication (one study
found increased colon cancer screening rates after doctors received communication training). Current efforts include a requirement in the Affordable Care Act that mandate clear language in health plans (recently voted to be the most popular provision of the Affordable Care Act), a National Action Plan to Improve Health Literacy, and the Plain Writing Act of 2010. For more information, visit:
Health Affairs: "New Federal Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The Cycle Of Costly 'Crisis Care'" (Article is free)
Op-Ed: "Take The Fear Our Of Paying For Elder Care"
An Op-Ed in the Telegraph by Andrew Dilnot, who chaired the Commission on Funding of Care and Support, suggests placing a cap on the costs for long-term care of between ?25,000 and ?50,000 ($39,000-$78,000). Dilnot explains that under the current system, people have to pay the costs of residential care until they have spent their assets (including their house) down to less than ?23,250 ($36,200). Two-thirds of people will need long-term care, and Dilnot suggests that for one in 10, the costs will exceed ?100,000 ($156,000). He explains: "We have to find some way of removing the fear, encouraging people to take more control of their lives, facilitating better and more diverse care, and getting the financial services sector to help out. It seemed reasonable to our commission that individuals should expect to prepare for care costs, since most of us will face them, but that the government should intervene to put a cap on the total costs any of us might face." For more information, visit:
The Telegraph: "Let's take the fear out of paying for elderly care"
UK: Pilot Named "A Good Death" Envisions Larger Role For Landlords
The Guardian reports on a pilot project to improve end-of-life care for people who are tenants. Home Group, an organization that manages 51,000 homes and provides care and support services to more than 20,000 people, is part of the pilot. The pilot currently has nine housing clients with terminal illnesses, and while the program leaders thought that home adaptations and home aides would be popular, people have asked for a wide range of assistance. For example, a client with stage four breast cancer requested a dishwasher to assist her with the 15 equipment sterilizations she has to do every day, while others have asked for technology assistance, or practical help with applying for benefits or planning a funeral. The pilot is expected to grow to 40 clients by the end of the nine months. For more information, visit:
The Guardian: "A pilot scheme for end-of-life support in the comforts of home"
Canada: Report Suggests Current System Of Supports For Caregivers Is Limited
A November report by the Institute for Research on Public Policy provides an overview of the research on the approximately 2.7 million caregivers in Canada, and the areas for improvement. The author notes: "Current long-term care policies assume that families (mostly adult children) are available to provide the care needed by their dependent elderly members, and that they have an obligation to do so." The author explains that in the United Kingdom, caregivers have the legislated right to ask for an assessment separate from the care recipient, and she suggest that Canada must also focus on supporting family caregivers. She suggests financial compensation with in-kind support including home help, education, and referral services. For more information, visit:
Institute for Research on Public Policy: "Supporting Caregivers and Caregiving in an Aging Canada"
Report: 55% Of Caregivers Are Overwhelmed By Amount Of Care They Provide
The American Psychological Association released results from its Stress in America survey earlier this month. The survey polls 1,226 U.S. residents, and 44% of respondents reported that their stress has increased over the past five years, and less than one-third of respondents believe they are doing an excellent or very good job at managing stress. Caregivers in the survey reported higher stress levels (6.5 on a scale of 10 as compared to 5.2 for the general public), and caregivers are also more likely to say they're doing a poor/fair job of practicing healthy behaviors, including managing stress (45% vs. 39%) and getting enough sleep (42% vs. 32%). For more information, visit:
APA: "Stress in America: 2011"
NIA Report Gives Update On Alzheimer's Research in 2010
The National Institute on Aging released its 2010 Progress Report on Alzheimer's disease, which 2.4 to 5.1 million Americans are estimated to have. The authors explain that the population of people aged 85 and older, who are most at risk for Alzheimer's, is expected to triple by 2050. The report mentions the National Alzheimer's Project Act, the new guidelines for diagnosing Alzheimer's, and gives an update on research into the disease conducted at NIA, and other institutes at the National Institutes of Health. For more information, visit:
NIA: "2010 Alzheimer's Disease Progress Report"
Study: Medicare Chronic Special Needs Plan Reduces Hospitalization
A study in Health Affairs analyzed Medicare Advantage Chronic Condition Special Needs Plans (C-SNPs) and found fewer hospital stays as compared to fee-for-service plans. The authors analyze the model of care used by the largest C-SNP, Care Improvement Plus, and compares diabetes patients in this plan to other beneficiaries that are enrolled in fee-for-service Medicare plans. The model of care emphasizes direct patient contact to address gaps, and to promote both primary and preventive health care. Participants in the C-SNPs had lower rates of hospitals stays (19% lower as compared to fee-for-service Medicare enrollees), while doctor visits were 7% higher for C-SNP enrollees as compared to fee-for-service enrollees. For more information, visit:
Health Affairs: "Medicare Advantage Chronic Special Needs Plan Boosted Primary Care, Reduced Hospital Use Among Diabetes Patients" (abstract is free)
National Journal: "Study: Special Home-Visit Program Could Promote Prevention"
Study: 5% of U.S. Population Accounts For 49% Of US Health Care Spending
A study by AHRQ focuses on health care spending in 2002 and finds that for 5% of Americans, annual medical expenses (not counting health insurance premiums) equaled or exceeded $11,487 per person. The 50% of the population with the lowest expenses accounted for only 3% of overall US spending on health care, with average expenses of less than $664 per person. People aged 65 and over represented about 13% of the U.S. population in 2002, however, they were responsible for 36% of health care spending. For more information, visit:
AHRQ: "The High Concentration of U.S. Health Care Expenditures"
The National Council on Aging has a fellowship program that is open to graduate or professional students to work in Washington, DC, during the summer of 2012. The application deadline is January 31, 2012, for more information, visit:
NCOA: Graduate Student Fellowship Program
The National Academy of Social Insurance (NASI), in partnership with the Children's Defense Fund (CDF) and the Center on Budget and Policy Priorities, offers a graduate internship for students interested in social policy with a focus on disability. The application deadline is March 1, 2012, for more information, visit:
NASI Graduate Internship
Eisner Prize: $100,000 Cash Award To Recognize Uniting Multiple Generations
The Eisner Foundation is accepting nominations for the Eisner Prize for Intergenerational Excellence, which includes a $100,000 cash award. The award recognizes excellence by an individual or non-profit in uniting multiple generations, especially seniors and youth, to bring about positive and lasting change in their community. Nominations are due by March 16, 2012, for more information, visit:
Health Technology Healthy New Year Video Challenge
The Office of the National Coordinator for Health Information Technology is inviting video submissions of 2 minutes or less that share a New Year's resolution for improving your health or the health of a loved one and how you'll use technology to achieve your goal. There are small cash prizes for five winners. Submissions are due by February 16, 2012. For more information, visit:
Healthy New Year Challenge
New Poster: Caregivers Should WAVE: Wash Ask Questions Vaccinate Ensure Safety
A new poster from the HHS Partnership for Patients, suggests that people do the "WAVE" to ensure patient safety. Noting that at any given time, 1 in 20 hospital patients has a healthcare associated infection, the guide provides suggestions for caregivers, noting: "As a family member or friend who assists in patient care, you are a "caregiver" and, therefore, a member of the healthcare team. Caregivers have an important role in preventing healthcare-associated infections." For more information, visit:
Do the WAVE
Report Examines Financial Obligation Attitudes Of Generation X, Y, And Boomers
An online survey from MetLife examined how different generations perceive financial obligations, including adult children assisting their parents. All generations said they valued being financially independent in old age, and "not being a burden on their children." Forty-six percent of respondents across generations believe that children have a responsibility to provide financially to their own parents or in-laws if they need it. Fifty-eight percent of respondents believe this means allowing a parent to live with them if the parent isn't healthy enough to live alone, while 50% believe parents should be able to live with them if they are experiencing financial difficulties. In contrast, 42% of parents said they would not accept help from their children in old age, and only 9% said they have accepted financial help from their adult children. For more information, visit:
MetLife: "Multi-Generational Views on Family Financial Obligations"
GAO: State Regulation Of Death Care Industry Varies
The GAO released a report that updates a 2003 report on the death care industry- defined as funeral homes, cemeteries, crematories, pre-need plans, and third party sales of funeral goods. The GAO updated this report in light of several media accounts of grave desecration, and a federal bill that was introduced in 2011, the Bereaved Consumer's Bill of Rights Act. The Federal Trade Commission (FTC) enforces the Funeral Rule and also conducts undercover shopping at funeral homes to test compliance with the rule, and has found an overall compliance rate of 85%. In a survey, state regulators were fairly mixed on the need for additional regulation, with sales of pre-need plans gaining the most support for more regulation by state governments (20%) and by the federal government (13%). For more information, visit:
GAO: "State Regulation of the Death Care Industry Varies and Officials Have Mixed Views on Need for Further Federal Involvement"
Report: Large Difference Between Involvement And Engagement For Seniors
A report from the Sloan Center on Aging and Work suggests that the idea of "just doing it" in reference to seniors and working, volunteering, caregiving, or taking classes may not provide much benefit as compared to seniors who are more deeply engaged in these activities. Using data from the National Institute on Aging's longitudinal Health and Retirement Study, and AARP, the authors explain that 21% of seniors are working, 21% are volunteering, 20% are caregiving, and 25% report being enrolled in a class in the previous five years. Thirty percent of the respondents were caregiving (childcare and care for a disabled friend or family member), with an average of 71 hours of caregiving per week. The authors conclude: "The results of this part of the survey suggest that being involved in one of the four activities but not feeling particularly excited about it, dedicated to it, or challenged by it - aspects of engagement - is about as good for one's well-being as not being involved in the activity at all. However, the well-being of those who are highly engaged in any of the four activities appears to be considerably enhanced." For more information, visit:
The Sloan Center on Aging & Work: "Just Do It?... Maybe Not!"
Clinical Trial Recruiting Stroke Patients
This clinical research study is testing the safety and therapeutic potential of a new stem cell therapy. In animal studies, measurable improvements in use of limbs were shown. Study patients will undergo periodic exams for two years. Study-related costs will be covered. You may be eligible if you:
- suffered an ischemic stroke within the past six months to three years;
have arm or leg weakness;
- are 18-75 years old;
- have no history of seizures;
- had only one stroke.
Trial locations: Palo Alto, CA and Pittsburgh, PA. For more information, visit:
University of Washington Study: (LIFT) Life Improvement Following Traumatic Brain Injury
After a Traumatic Brain Injury (TBI), many people experience symptoms including low mood, poor energy, loss of interest in usual activities, and changes in appetite and sleep. The LIFT study uses a particular approach to education and counseling, called Cognitive Behavioral Therapy (CBT). LIFT Researchers hope to find out if CBT can help people with a TBI get back to activities they enjoy, develop positive mental habits, and improve overall quality of life. Participants may receive 12 sessions of CBT over the telephone and will be paid up to $100 for their time and participation. For questions about LIFT please contact Kenneth Marshall at (206) 543-4213 or 1-866-577-1925 or visit:
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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