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|A Newsletter of FCA's National Center on Caregiving|
December 15, 2010
Volume X, Number 23
| IN THIS ISSUE|
State Legislation, Policy & Reports
- Fifteen States Report Budget Gaps For FY 2011 More...
- Changes To Oregon's Health Plan Led To Disenrollment More...
- Texas Insurance Commission Forbids Insurer Provisions Allowing Interpretation More...
- Almost Two Million New Yorkers Serve As Caregivers More...
Federal Legislation, Policy & Reports
- Senate Special Committee On Aging Holds Forum On Alzheimer's Disease More...
- LTC Generosity Index Used To Explain Variation In Medicaid Spending More...
- Congress Still Deciding On Budget More...
- National Alzheimer's Project Act Passes Senate And House More...
Research Reports & Journal Articles
- British Patients Will Receive Their Own Social Care Budgets More...
- Report Analyzes Potential Loss Of Benefits For Disabled In United Kingdom More...
- Two Reports Focus On Caregiving And Alzheimer's Disease In Canada More...
- Report Highlights Demographic Shifts In Parts Of Asia More...
- Guide On Sexuality And Dementia In Residential Care Facilities More...
- Report Highlights Aging And Disability Resource Centers More...
- Literature Review Of Spirituality For Residents With Dementia In Long-Term Care Facilities More...
- Palliative Care For Patients With Dementia More...
- Report Finds Inconsistent Treatment Approaches For Life-Ending Cancer More...
Conferences & Trainings
- Caregiving 101 Webinar Archived More...
- Realizing Health Reform's Potential Webinar: Adults Ages 50 To 64 And The Affordable Care Act, January 6 More...
Funding, Media & Miscellaneous
- Academic Grant For Research On Retirement Income And Disability Insurance More...
- Program Project Grant Announcement From National Institute On Aging More...
- Health And Human Services Revises Rule For Hospital Visiting Procedures More...
- New Website Addresses Workplace Flexibility More...
- Alzheimer's Study Seeks Participants With Mild Cognitive Impairment More...
Fifteen States Report Budget Gaps For FY 2011|
While the national recession officially ended in June 2009, states continue to face large budget gaps due to lower revenues, Recovery Act funding ending, and structural budget deficiencies. According to a recent report by the National Conference of State Legislatures, 15 states are reporting new budget gaps halfway through Fiscal Year 2011 and the sum of these gaps is estimated at $26.7 billion. Medicaid and other health care program spending overruns were reported by eighteen states for FY 2011. The New York Times recently compared state budget problems to the subprime mortgage meltdown based on an estimated $3.5 trillion worth of unfunded liability for state and local pension plans, states using "one-time" budget fixes like selling state buildings, and rating agencies possibly being too generous in their ratings of state debt. Budget shortfalls often translate to health services being cut, for example, a recent story on National Public Radio highlighted the plight of 98 patients in Arizona's Medicaid program who had been pre-approved for organ transplants but were recently informed that there is no longer funding to pay for their transplants. The state decided to stop paying for transplants in the Medicaid program partly due to a $1.5 billion budget deficit. For more information, visit:
National Conference of State Legislatures: State Budget Update November 2010
New York Times: "Mounting Debts by States Stoke Fears of Crisis"
National Public Radio: "Arizona Budget Cuts Put Organ Transplants at Risk"
Philadelphia Inquirer: "Amid Medicaid cuts, states brace for worse"
Changes To Oregon's Health Plan Led To Disenrollment
The December issue of Health Affairs
(Volume 29, Number 12) includes an article detailing the findings of a longitudinal study of Oregon's Medicaid health plan and cost-sharing changes that contributed to a 77% disenrollment rate with 80,000 participants leaving the program over a two-year period. Policymakers made changes in 2003 that increased premiums, raised cost-sharing, and imposed strict payment deadlines for members in the "Standard" version of the program. After the changes were imposed, participants in the "Standard" plan were nearly twice as likely to have unmet health care needs compared to participants in the "Plus" plan. The authors suggest the results are especially relevant for policymakers who may be considering increased cost-sharing in state Medicaid plans in the face of state budget shortfalls. For more information, visit:Health Affairs: "Raising Premiums And Other Costs For Oregon Health Plan Enrollees Drove Many To Drop Out"
Texas Insurance Commission Forbids Insurer Provisions Allowing Interpretation
On December 6, 2010, the Insurance Commissioner of Texas, Mike Greeslin, formally adopted rules that remove insurers' blanket authority to interpret what their policies cover in Texas. The Dallas Morning News
highlighted the changes and explained that prior to these rules being implemented, health and disability plans often included discretionary clauses that allowed insurers the right to interpret their own policies in deciding what benefits were required to be paid. In announcing the need for the rule, the Commissioner cited an insurance policy that stated it had "complete discretionary authority" to review all denied claims to determine whether or not policyholders should have received benefits they were seeking. In addition to day-to-day caregiving issues, caregivers are often forced to work with insurance companies when insurance claims are delayed or denied. As a result of this new rule, consumers will now have the ability to challenge denial of benefits if they consider them unfair, either by contacting state regulators or filing a lawsuit against the company. Both options were described as nearly impossible previously because of the discretionary clauses. Texas joins 22 other states that have enacted bans on discretionary clauses. For more information, visit:
Dallas Morning News: "Texas' insurance commissioner forbids insurers' provisions that allowed them to interpret policies"
Almost Two Million New Yorkers Serve As Caregivers
A recently released report used data from the 2008 Behavioral Risk Factor Surveillance System (BRFSS) survey to estimate that there are 513,023 caregivers in upstate New York who provide an average of 11 hours of care per week. If the 1.4 million caregivers in downstate New York are included, the total number of caregivers in New York State is 1.9 million caregivers. The analysis was conducted by Excellus Blue Cross Blue Shield and found that the majority of caregivers are women (61%) and the majority of care recipients (61%) are aged 65 and older, although 35% are in the 18 to 64 age group. Almost one-third of respondents reported that caregiver obligations affected their employment by either forcing them to take time off or reduce their work schedules while 11% reported retiring or leaving work because of caregiving responsibilities. The Florida Office on Disability and Health at the University of Florida has conducted analysis on data from several other states that have used the BRFSS survey (and accompanying caregiver modules) to better understand the demographics and numbers of caregivers in their state. For more information, visit:
Excellus Blue Cross Blue Shield: "Informal Caregiving in Upstate New York"
The Florida Office on Disability and Health at the University of Florida
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Senate Special Committee On Aging Holds Forum On Alzheimer's Disease|
The Senate Special Committee on Aging held a forum on December 8, 2010, about Alzheimer's disease and its impact on families. Kathy Greenlee, the Assistant Secretary of the Administration on Aging (AoA), testified about programs to support caregivers who are caring for loved ones with Alzheimer's disease. For example, AoA is currently working with 16 states to field test nine evidence-based caregiver interventions. Patricia Grady, the Director of the National Institute of Nursing Research at the National Institutes of Health, explained her agency's efforts to support the estimated 10.9 million caregivers who are serving patients with Alzheimer's. She highlighted a NINR-funded study focused on an evidence-based, nurse practitioner-guided intervention for patients with Alzheimer's disease (or other dementia) and their caregivers. For more information, to read panel statements, or to watch the hearing, visit:
Senate Special Committee On Aging: "FORUM: Until There's a Cure: How to Help Alzheimer's Patients and Families NOW"
LTC Generosity Index Used To Explain Variation In Medicaid Spending
A recent paper by professors from the Health Policy Research Center at the University at Albany, State University of New York, discussed the difficulty for state policymakers in assessing how state Medicaid policy is connected to overall state Medicaid spending. There is enormous variation in state Medicaid programs, for example, the authors explain that in Connecticut, 86 out of 1,000 elderly people have Medicaid-financed nursing home care, while in New Jersey only 48 out of 1,000 elderly people receive this type of care. The authors first analyze the generosity of coverage in terms of what populations and services are covered with the assumption that more generous states would spend more on long-term care services. However, the authors find that "service and coverage generosity are only moderately correlated (.44) with overall per capita long-term care spending..." They suggest that other variables may weaken the explanatory power, for example, a state may have generous policies but difficult application or spend-down policies may discourage enrollment. The second variable examined is the rates paid for particular services, based on the assumption that higher rates would mean higher state expenditures; however, this variable was not perfectly correlated with spending either. The authors use a previously designed "Long-Term Care Policy Generosity Index" that combines eight variables. Using this index, the authors are able to "explain" two-thirds of the variation in long-term care spending across the states. New York is rated the most generous using this index while Nevada is rated least generous. For more information, visit:
Health Policy Research Center: "Medicaid Policy and Long-Term Care Spending"
Congress Still Deciding On Budget
Congress has not yet passed a budget for Fiscal Year 2011 and it is unclear when the budget will pass and what funding will be included in the final bill. The House version is thought to have stronger support from the White House and is a "Continuing Resolution" that would freeze appropriations for FY 2011 at the 2010 level and provide $45.9 billion less than the president requested for FY 2011. The Senate version is an omnibus bill that combines spending bills for a dozen agencies and provides $29 billion less than President Obama requested for FY 2011. Arch National Respite Network, a partner of the National Center on Caregiving at Family Caregiver Alliance, published a recent legislative alert explaining that if funding remains at FY 2010 levels then 200,000 fewer family caregivers would receive support services and three million hours of respite care will be lost. Approximately $104.5 million in additional funding (as compared to FY 2010) for these services was included in the Senate Appropriations Bill for the Department of Health and Human Services that was passed by the Senate Appropriations Committee in July, but was not voted on by the full Senate. For more information, visit:
Arch National Respite Network: Legislative Alert
Politico: "Dem budget bill: $1.1 trillion; 1,900 pages"
National Alzheimer's Project Act Passes Senate And House
The House of Representatives joined the Senate and passed the National Alzheimer's Project Act (S3036, HR 4689) on December 15, 2010 and the bill now heads to President Obama. According to the National Alzheimer's Association, the passage of the act will lead to the creation of a national strategic Alzheimer's plan and would also establish an inter-agency council to work with the Secretary of Health and Human Services. A recent article highlighted the need for additional funding for Alzheimer's and highlighted proposed legislation that would add $2 billion annually to Alzheimer's research funding. For more information, visit:
Alzheimer's Association: "Congress Passes Historic Legislation That Provides Framework for National Alzheimer Strategy"
CBS News: "Alzheimer's and the 'Silver Tsunami:' Is America Ready?"
British Patients Will Receive Their Own Social Care Budgets|
The British government recently announced that a million adults in need of social care will be granted personal budgets that they can use to purchase services they need. The program will start in 2013 and will quadruple the current number of recipients with these types of budgets according to an article in the Guardian. The National Health Service is also allocated 400 million pounds by the government over the next four years to fund breaks for family caregivers. A similar program, known as "Cash and Counseling," is offered in a number of states in the U.S. through the Medicaid program. For more information, visit:
The Guardian: "A million adults to get their own social care budgets"
National Resource Center for Participant-Directed Services
Report Analyzes Potential Loss Of Benefits For Disabled In United Kingdom
In 2009, the British government published a report exploring possible options to reform how the government pays for disability care. After elections in May 2010, the United Kingdom Commission on the Funding of Adult Care and Support was established and charged with making recommendations on how to achieve an affordable and sustainable funding system. The authors of a recent report from the Economic and Social Research Council suggest that two disability programs are potential targets for cutbacks. The authors question the methodology of the 2009 government report and suggest that it underestimated how harmful cutbacks to programs serving low-income, disabled older people will be, especially when the additional costs of being disabled are included in the analysis. The report includes modeling of different funding scenarios for programs that support the elderly and disabled in the United Kingdom. For more information, visit:
Institute for Social and Economic Research
Two Reports Focus On Caregiving And Alzheimer's Disease In Canada
The Canadian Institute for Health Information recently released two reports focused on family caregivers in Canada. The authors use data gathered from Canada's Home Care Reporting System and an assessment instrument used for home care clients. In the first report, "Supporting Informal Caregivers- The Heart of Home Care," the authors analyze a sample of 131,000 home care clients age 65 and older. Caregiver distress (defined in the study as "the overall impact of physical, psychological, social and financial demands of caregiving") is correlated with the amount of time spent caregiving. Clients who receive 21 or more hours of care per week are four times more likely to have a distressed caregiver than those who receive 10 hours or less per week (28% vs. 7%). The caregivers with the highest rates of distress care for home care clients who exhibit verbally and/or physically abusive behavior. In the second report, "Caring for Seniors With Alzheimer's Disease and Other Forms of Dementia," the authors discuss dementia, caregiving, and residential care vs. home care services. For higher-functioning seniors with dementia, those who are newly admitted to residential care are twice as likely to be unmarried, highlighting the role of spousal family caregivers. Nearly all of the home care clients with a dementia diagnosis (99%) receive support from at least one informal caregiver. The authors also find that the strongest predictor of a senior with dementia living in residential care instead of home care is the practice of wandering. The odds of being newly admitted to residential care are seven times higher for seniors who wander as compared to those who do not. For more information, visit:
Canadian Institute for Health Information: "Supporting Informal Caregivers- The Heart of Home Care"
Canadian Institute for Health Information: "Caring for Seniors With Alzheimer's Disease and Other Forms of Dementia"
Report Highlights Demographic Shifts In Parts Of Asia
A recent collaborative report discusses the challenges faced by China, India, and Indonesia, where the population of people age 65 or older will more than triple between 2000 and 2050. This population shift in these countries and other Asian countries coincides with economic and social changes that are changing traditional family structures. The authors explain that some policies will be easier to implement sooner rather than later, for example, programs mandating or encouraging private saving for retirement. In addition, policy makers should start to consider how to fund and administer health care for this aging population that will likely consume more health care than younger residents. The report was released at a Beijing conference from December 8-10, 2011 and a second conference will be held in New Delhi in March 2011. For more information, visit:
U.S. National Academy of Sciences: "Preparing for the Challenges of Population Aging in Asia: Strengthening the Scientific Basis of Policy Development"
Guide On Sexuality And Dementia In Residential Care Facilities|
Alzheimer's Australia recently released a guide for use by people living with dementia, family members, caregivers, and health professionals about sexuality and dementia within the context of residential care facilities. The author of the guide explains that it will not provide "easy solutions," however, the guide does provide a context for discussions about sexuality, consent, privacy, risk management, and developing appropriate policies. For more information, visit:
Alzheimer's Australia: "Understanding Dementia Care and Sexuality in Residential Facilities"
Report Highlights Aging And Disability Resource Centers
The U.S. Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS) have funded over $110 million to states since 2003 to develop Aging and Disability Resource Centers (ADRCs) to assist people in accessing long-term services and support through a single entry point. A recent report from the National Health Policy Forum at George Washington University explains that ADRCs were originally created to assist people navigate long-term services and support. There are currently 325 ADRCs in 45 states. While AoA and CMS are specific about the expected functions of ADRCs, the authors explain that there is still considerable variation in the capabilities of ADRCs and how the functions are implemented. AoA and CMS developed six criteria to measure "fully functioning" ADRCs and AoA reports that as of September 2010, over 80% of states and territories implementing ADRCs have achieved more than half of the measurable outcomes, while almost 30% have achieved more than three quarters of the measurable outcomes. For more information, visit:
National Health Policy Forum: "Aging and Disability Resource Centers (ADRCs): Federal and State Efforts to Guide Consumers Through the Long-Term Services and Supports Maze"
Literature Review Of Spirituality For Residents With Dementia In Long-Term Care Facilities
The October issue of Annals of Long-Term Care: Clinical Care and Aging (Volume 18, Issue 10) includes a literature review of articles addressing spirituality for residents with dementia in long-term care facilities. After all screenings and reviews, 13 articles were included and the authors identify three major themes present in all 13 articles: spiritual needs, methods of assessment, and clinical guidelines. Seven articles discuss clinical guidelines and include suggestions to assist staff to provide spiritual care. Eight articles discuss the spiritual needs of residents, and the authors identify three sub-themes, including individuals maintaining a sense of meaning and purpose; the need to preserve meaningful connections with others, and the need for residents to have a relationship with God. Five articles in the review discuss methods to assess the spiritual needs of residents, including MacKinlay's 2-level method of assessment. However, the authors explain that a check-box scale may not be a valid spirituality needs assessment and staff may need to also use observations and intuition to meet residents' spiritual needs. For more information, visit:
Annals of Long-Term Care: Clinical Care and Aging: "A Systematic Review of Spirituality and Dementia in LTC"
Palliative Care For Patients With Dementia
The November issue of the Journal of the American Geriatrics Society (Volume 58, Issue 11) includes an article based on a survey of 426 hospice and palliative care program directors about the provision and challenges of providing palliative care to patients with dementia. In the survey, 94% of hospice and 72% of palliative care directors report that they have recently cared for patients with dementia, as compared to a 1995 study that found only 21% of hospice programs had provided this type of care. The respondents report that the most common barriers to providing palliative care include a lack of awareness by family members and referring providers, the need for respite services, and reimbursement policies. The most commonly cited needs were family information, assistance with caregiver burden, and behavioral symptoms. Successful strategies included interdisciplinary teams, collaboration with community organizations, and alternatives to aggressive end-of-life care. The first author of the study, Dr. Alexia M. Torke, explains, "Although the general public and many physicians do not associate palliative or hospice care with dementia, dementia is a terminal disease and should be respected as such. Palliative care is needed throughout the illness and can provide those who are unable to communicate their needs with a better quality of life as well as lowering the stress the illness places on caregivers and the entire family." For more information, visit:
Journal of the American Geriatrics Society: "Palliative Care for Patients with Dementia: A National Survey"
EurekAlert Summary of Study
Report Finds Inconsistent Treatment Approaches For Life-Ending Cancer
A recent report by the Dartmouth Atlas of Health Care suggests that patients with life-ending cancers are receiving vastly different treatments based on the hospital where they are treated. Treatments ranged from chemotherapy and other life-prolonging efforts at some hospitals while other hospitals directed most of their patients to hospice care. The authors examine how care was provided to Medicare patients over age 65 with cancer that had poor prognoses, and found that over one-third of patients with poor prognoses spent their final days in hospitals and intensive care units. In at least 50 academic medical centers, less than half of patients with poor prognoses received hospice services. For more information, visit:
Dartmouth Atlas of Health Care: "Quality of End-of-Life Cancer Care for Medicare Beneficiaries"
Kaiser Health News: "Hospice or Hospital? Where You Die Depends on Where You Live"
Caregiving 101 Webinar Archived|
Family Caregiver Alliance hosted a webinar on December 7, 2010, entitled "Caregiving 101: Exploring the Complexities of Family Caregiving." The archived webinar, a PDF of the PowerPoint presentation, and a link to FCA fact sheets for family caregivers is now available on the FCA website. For more information, visit:
Family Caregiver Alliance: "Caregiving 101: Exploring the Complexities of Family Caregiving"
Realizing Health Reform's Potential Webinar: Adults Ages 50 To 64 And The Affordable Care Act, January 6
AARP and Women in Government are cosponsoring a webinar on January 6, at 2pm (EST) that will examine how the Affordable Care Act can help baby boomers who lose employer health benefits to gain access to affordable and comprehensive insurance. Presenters include Richard G. Frank, Deputy Assistant Secretary for Disability, Aging, and Long-Term Care Policy, Department of Health and Human Services; John Rother, Executive Vice President of Policy, Strategy, and International Affairs at AARP; Sara R. Collins, Vice President, Affordable Health Insurance at the Commonwealth Fund; and Michelle M. Doty, Assistant Vice President and Director of Survey Research at the Commonwealth Fund. For more information or to register, visit:
The Commonwealth Fund: "Realizing Health Reform's Potential Webinar: Adults Ages 50 to 64 and the Affordable Care Act"
Academic Grant For Research On Retirement Income And Disability Insurance|
The Center for Retirement Research at Boston College sponsors an annual grant program for researchers in the retirement and disability insurance field. Up to seven grants of $45,000 each will be provided and the submission deadline is January 28, 2011. For more information, visit:
Center for Retirement Research at Boston College: "Steven H. Sandell Grant Program"
Program Project Grant Announcement From National Institute On Aging
The National Institute on Aging recently announced a grant opportunity to support "integrated, multi-project research programs that have a well-defined, central research focus or objective." The application requires a minimum of three individual research projects that contribute to the program objective. There are multiple application due dates and the first due date is January 25, 2011. For more information, visit:
National Institute on Aging
Health And Human Services Revises Rule For Hospital Visiting Procedures
The Department of Health and Human Services (HHS) recently announced a final rule mandating that hospitals have written policies and procedures explaining to all patients their right to choose who may visit them during their inpatient stay as well as their right to withdraw consent for visitation at any time. The rules mean that patients will have the right to choose their own visitors during a hospital stay, including a visitor who is a same-sex domestic partner. The rules update the Conditions of Participation that all Medicare and Medicaid-participating hospitals and critical access hospitals must meet. Hospitals are also required to explain in their written policies the circumstances under which the hospital may restrict patient access to visitors based on reasonable clinical needs. For more information, visit:
Department of Health and Human Services
New Website Addresses Workplace Flexibility
The Sloan Center on Aging and Work at Boston College recently launched a website focused on workplace flexibility. Workplace flexibility (or lack thereof) is an issue faced by many family caregivers and this website provides information for employees and employers, including case studies, types of flexibility, challenges in implementing flexibility in the workplace, and the benefits of flexibility for employees and employers. For more information, visit:
The Sloan Center on Aging and Work at Boston College
Alzheimer's Study Seeks Participants With Mild Cognitive Impairment|
The National Institute on Aging is seeking individuals who are experiencing early stages of mild cognitive impairment for their study "Imagine a World Without Alzheimer's." ADNI GO, a landmark research study sponsored by the National Institute on Aging at the National Institutes of Health, is examining the sequence and timing of events at the initial onset of mild cognitive symptoms and may help scientists to better identify who is at risk for Alzheimer's disease, as well as the effectiveness of potential prevention and treatment strategies. Specifically, researchers seek volunteers between the ages of 55 and 90 who may be transitioning from normal cognitive aging to an early stage of mild cognitive impairment, a condition that may progress to Alzheimer's disease. This two-year, 24 million-dollar study focuses for the first time on people experiencing the very earliest complaints of memory problems that affect their daily activities. Several nationwide clinical research sites are taking part in the ADNI GO study and are looking for participants. For more information, visit:
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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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