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|A Newsletter of FCA's National Center on Caregiving|
August 17, 2011
Volume X, Number 14
State Legislation, Policy & Reports
- OK: First State To Automate Enrollment Decisions For Medicaid Online More...
- SC: Town Adapts Public Safety, Transportation, And Doctor Recruitment More...
- IA: State Reverses Course On Reducing Respite More...
- MT: Assisted Living Home No Longer Plans To Evict Resident Due To Rate Cuts More...
- OH: State Increases Funding For PASSPORT Medicaid Waiver More...
- NH: Manchester Closes Congregate Dining Locations That Serve Frail Elderly More...
Federal Legislation, Policy & Reports
- Businessweek: Super Committee Will Lead To "Superlobbying" More...
- Brief Explains How FMAP Is Calculated And Potential Impact Of ACA More...
- HHS: 17 Million Americans Received Preventive Services More...
- AHRQ Accepting Comments On Draft Report On Case Management For Adults With Medical Illness And Complex Care Needs More...
- Australia: Gvt. Report Calls For Dramatic Shifts In Long-Term Care Infrastructure More...
- UK: Commentary Focuses On Enforced Relocation Of Older People More...
Research Reports & Journal Articles
- Three GAO Reports: LTC Insurance, Nursing Home Ownership, And Guardians More...
- Report: Spending For Hospice Care For Nursing Home Residents Has Increased 70% Since 2005 More...
- Report: National Median Hourly Wage For Personal Care Aides Declined In 2010 More...
- Study: Caregivers And Relatives Perceive Care Differently More...
- Study: Hospitalists Associated With Shorter Hospital Stays, Increased Medicare Costs More...
Conferences & Trainings
- Webinar: Focus On Texas: Caregiver Assessments: September 20th, 12pm More...
- Webinar: Medicaid Management Using Health IT For Care Of Elderly Patients: Aug 18 More...
- Webinar: Focus On ACA And Quality Improvement Organizations: August 23 More...
Funding, Media & Miscellaneous
- Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards More...
- Articles Focus On Caregiving Issues For Baby Boomers More...
- NOFA: The Veterans Transportation And Community Living Initiative (VTCLI) More...
- National Caregiving Recognition Award Will Provide $10,000 To Family Caregivers More...
- Eleanor Clift: "Hospice And The End Game" More...
1. Help Doctors Research Pulmonary Hypertension Treatment More...
2. Study: Metastatic Renal Cell Carcinoma Patients Taking Torisel More...
3. Survey For Family Caregivers More...
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Kaiser Health News profiled Oklahoma's new online enrollment Web Site for Medicaid and suggested that the process (11 minutes) was as quick as setting up a Netflix account. Oklahoma is the first state to fully automate enrollment- meaning people can apply online and receive a decision about whether or not they qualify for SoonerCare (OK's version of Medicaid) online. The move is important because of the approximately 16 million Americans who are slated to become eligible for Medicaid under the Affordable Care Act in 2014. The state predicts that at least 250,000 Oklahomans will become new enrollees when the provision takes effect. Kaiser Health News notes the irony in Oklahoma's new capability at the same time that the state turned down a $54.5 million federal grant to develop its state health exchange. A June Kaiser Foundation report found that 32 states offer an online, publicly-accessible application for Medicaid and/or CHIP that could be submitted electronically while 18 states allow online renewals.
On a related note, a mother announced a lawsuit against the city and county of Denver over a benefit system malfunction which incorrectly told a Walgreens pharmacy that her son did not qualify for Medicaid in 2009. According to the Denver Post, despite having letters from the agency attesting to his eligibility, his mother couldn't get his asthma prescription filled for several months because the computer system indicated to the pharmacy that he was ineligible. Her son died in 2009 after complications from an asthma attack. Colorado's re-vamp of six separate benefit computer systems into one system began in 2002 and has been a rocky transition with lawsuits and settlements over backlogs, wrongful terminations, and incorrect eligibility determinations. For more information, visit:
Kaiser Health News: "Making Medicaid As Easy As A Netflix Membership"
Denver Post: "Mom sues Denver, three workers over child's death"
Kaiser Foundation: "Online Applications For Medicaid And/Or CHIP: An Overview of Current Capabilities And Opportunities For Improvement" (June 2011)
In Aiken, South Carolina, almost 25% of the population is older than 65, and the town is taking steps to recruit more medical professionals while also improving its transportation and public safety infrastructure. To recruit doctors, Aiken's only hospital offers expense reimbursements and guarantees a salary during their first year while they start their practice, which has resulted in 58 doctor recruits. Because of the larger aging population, doctors have to be comfortable with Medicare reimbursements and serving patients who often have multiple conditions. To address public safety issues, Aiken has a free service called Smart 911 that allows residents to have critical medical information appear to emergency personnel when a call comes in from a participant's phone. Aiken is also using GPS bracelets/anklets from Project Lifesaver International to track dementia patients, with one successful "rescue" already as a result of the devices. The town has installed oversized street signs to help older drivers and the Council on Aging operates buses for residents who no longer drive. Unfortunately, the Council on Aging's budget has been reduced about 30% compared to previous years and one result is a waiting list for Meals on Wheels that has doubled in size to 650 people- despite administrative staff from Meals on Wheels also taking on routes in addition to their normal duties. For more information, visit:
Governor Terry Branstad's administration reversed course on a cost-cutting change to a Medicaid program that provides respite to 6,173 family caregivers of disabled Iowans. To help address a projected $570 million deficit in the state's Medicaid budget, the Iowa Department of Human Services had originally proposed capping monthly respite care usage at 48 hours per month- a change that would have prevented families from "banking" unused hours from one month to use in the next month. After an outcry, the state changed course and proposed an annual cap of 576 hours that would have allowed family caregivers to choose when to spend the respite time but would have still equated to a reduction in hours for 700 families that currently receive the most respite hours because their loved ones have severe needs. However, that plan was ultimately nixed as well, and Radio Iowa suggest the change may be due to hundreds of emails that were sent to the governor by family caregivers. The state currently spends $25 million on respite annually and the move would have saved the state almost $2.5 million. For more information, visit:
An assisted living center in Billings, Montana had announced plans last month to evict one of its residents, a Korean War veteran, because of 10% cuts made in Montana's Medicaid reimbursement rate for assisted living facilities. The owner explained that she was already subsidizing the cost of Medicaid residents by about $1,000 a month and couldn't afford to receive the 10% reduced rate of $65 a day. However, Governor Schweitzer recently announced that the rates will only be cut by two percent instead of the ten percent cut announced at the end of the legislative session. He explained the change by saying that he didn't realize that other Medicaid providers (home care agencies, hospitals, and mental health centers) were only facing a two percent cut while assisted living facilities were facing a ten percent cut. The owner of the assisted living facility in Billings explained that while she will no longer plans to evict the resident, she will no longer accept residents who are dependent on Medicaid paying their bill. There are currently 800 elderly and disabled residents in Montana who rely on a Medicaid waiver to pay for their care in assisted living homes. For more information, visit:
The Toledo Blade recently profiled Ohio's response to providing long-term care, especially through its PASSPORT (Pre-Admission Screening System Providing Options and Resources Today) Medicaid Waiver, a program that received an increased appropriation in the state's most recent budget. The enacted budget will provide a $55.6 million increase for PASSPORT through 2013, resulting in 4,800 more Ohioans being able to access home and community-based services through the program at about one-third of the cost of nursing home care. The state will also spend $166 million more in total spending on Medicaid long-term care services and supports in addition to the increased money dedicated for PASSPORT. For more information, visit:
The UnionLeader.com interviewed the executive director of the Manchester Housing and Redevelopment Authority after he announced that two dining rooms in public housing complexes were closed in July due to state funding cuts that zeroed out the appropriation for the Congregate Services Program. The program provides meals, housekeeping, laundry, grooming, and other services to frail public housing residents. The closure affected 35 residents and the executive director explained that while he is trying to keep three other congregate mal programs operating, he is concerned that those programs will also be forced to close if the state doesn't provide a match which is required in order to receive the federal funding. He speculated that people who can't rely on the congregate meals at a cost of $7,300 per year may move to more expensive options, like Choices for Independence at $18,000 a year, or nursing homes at an average of $101,000 per year.
For more information, visit:
A 12-member supercommittee will soon begin work on reducing the federal budget deficit by $1.2 trillion in the next ten years and an article in Businessweek explains that lobbyists are already preparing. If the supercommittee does not reach agreement by November 23, or if Congress rejects their proposals, automatic agency cuts (50% from defense and 50% from other programs, excluding Medicaid, Social Security, and most of Medicare) will be triggered starting in 2013. Democrats on the committee are expected to recommend raising taxes on the wealthy- a move supported by Warren Buffet who recently wrote an Op-Ed that explained his tax rate last year was 17.4% while the rest of his office paid tax rates of 33 to 41%. Families USA released a guide about the process and included a mock invoice of $74,800 to "Mr. and Mrs. Middle-Class America" for "your Mom or Dad's nursing home care," to draw attention to the effects of potential cuts to Medicaid. For more information, visit:
Businessweek: "Lobbyists Take Aim at the Supercommittee"
New York Times Op-Ed by Warren Buffet: "Stop Coddling the Super-Rich"
Families USA: "Medicaid, the Budget, and Deficit Reduction: The Threat Continues"
Kaiser Health News: "FAQ: 'Super Committee' Could Have Big Impact On Medicare, Medicaid Spending"
Brief Explains How FMAP Is Calculated And Potential Impact of ACA
A paper from the Kaiser Commission on Medicaid and the Uninsured provides an overview of the Federal Medical Assistance Percentage (FMAP), how the formula is calculated, and potential changes as more people become eligible for Medicaid under the Affordable Care Act. FMAP is the specific percent that the federal government uses in calculating its share of the cost of Medicaid in each state and is based on each state's per capita income for the past three years relative to the U.S. average. Because the income is calculated using data from the past three years, there is a lag in accounting for economic downturns. The formula gives relatively poor states a higher share of federal money than wealthier states. On average, the federal government pays about 57% of the cost of Medicaid benefits while states pay 43%. For more information, visit:
Kaiser Commission on Medicaid and the Uninsured: "An Overview of Changes in the Federal Medical Assistance Percentages (FMAPs) for Medicaid"
HHS: 17 Million Americans Received Preventive Services
The Department of Health and Human Services announced earlier this month that 17 million people have received free preventive services this year through Medicare while 900,000 Medicare beneficiaries in the donut hole received 50% discounts on their prescription drugs. In addition, year to date, over one million Americans with original Mediare have received an Annual Wellness Visit. The cost of the average Medicare prescription drug plan premium is scheduled to be about $30 in 2012, a slight decrease from $30.76 in 2011. The release also includes links to state-by-state information. For more information, visit:
HHS Press Release: "Medicare prescription drug premiums will not increase, more seniors receiving free preventive care, discounts in the donut hole"
CMS: "Beneficiaries Utilizing Free Preventive Services by State, Year-to-Date 2011"
AHRQ Accepting Comments On Draft Report On Case Management For Adults With Medical Illness And Complex Care Needs
AHRQ is accepting comments on a draft report on case management for adults with medical illness and complex care needs. The draft report evaluates case management as an intervention strategy for chronic illness management and summarizes existing evidence related to how case management can improve patient-centered outcomes, quality of care, and resource utilization. Comments are due by August 23, for more information or to provide feedback, visit:
Australia: Gvt. Report Calls For Dramatic Shifts In Long-Term Care Infrastructure
The Australia government released a report on August 8 that provides an overview of the country's current long-term care needs, an analysis of the challenges currently facing the currently, and proposals to improve. Challenges cited by the authors include difficult navigation, variable quality, limited services, workforce shortages, and inconsistent and inequitable co-contributions. The suggested improvements to the system would result in a National Disability Insurance System (NDIS) that would benefit about 410,000 people who are currently living with a significant disability. NDIS would cover care and support services including therapy, domestic help with cooking, cleaning and shopping, home and vehicle modifications and assistance with activities of daily living. The changes would also come with a price tag of an additional $6.5 billion a year beyond the $7 billion that is already spent annually. For more information, visit:
Australian Government Productivity Commission: "Caring for Older Australians"
The Australian: "Disability and aged-care reforms could transform lives of millions"
UK: Commentary Focuses On Enforced Relocation Of Older People
A commentary in Age and Aging focuses on relocations for older people who are forced to move when care homes close or for other administrative purposes. The brief includes analysis on a recent court ruling in the United Kingdom about relocations and provides in-depth suggestions for practitioners to identify hazards in order to minimize risks when residents must be moved. Characteristics of residents who are most vulnerable during moves include: gender (men tend to do less well), age, dementia, depression, anxiety, and withdrawal in the face of relocation. When moves are inevitable, the authors advise informing residents and their families as soon as possible, making individual plans for each resident and sharing the information with all parties, and comprehensive medical and psycho-social needs assessments of residents with their families. For more information, visit:
Age and Ageing: "Enforced relocation of older people when Care Homes close: a question of life and death?" (article is free)
Three GAO Reports: LTC Insurance, Nursing Home Ownership, And Guardians
The GAO recently released three reports on issues important to family caregivers, including an analysis of a long-term care premium increase in the federal government's long-term care insurance program, an analysis of private investor ownership of nursing homes, and a review of court-appointed guardians in Social Security, the Veterans Administration, and state courts.
The first report analyzes an increase of up to 25% in premiums for 66% of the enrollees in the Federal Long Term Care Insurance Program that was implemented shortly after John Hancock Life Insurance Company was awarded a seven-year contract to administer the program. The report discusses the difficulty in pricing long-term care insurance, an issue that has led many long-term care insurers to raise monthly premiums and/or to exit the market altogether.
The second report analyzes nursing homes that were acquired by private investment (PI) firms and whether or not this ownership affects deficiency rates on state surveys, nurse staffing levels, and financial performance. The authors find that on average, PI and other for-profit homes had more total deficiencies than nonprofit homes before (2003) and after (2009) acquisition. While the reported total nurse staffing ratios (hours per resident per day) were lower in PI homes, there were higher numbers of registered nurses in PI homes than in other homes.
The third report examines guardians who are appointed by the Social Security Administration, Veterans Affairs, and state courts and compared the screening procedures, laws, and information sharing between these three programs. The GAO suggests that there is room for improvement in guardianship monitoring by state courts and information sharing between the three entities. For more information, visit:
GAO: "Long-Term Care Insurance: Carrier Interest in the Federal Program, Changes to Its Actuarial Assumptions, and OPM Oversight"
GAO: "Nursing Homes: Private Investment Homes Sometimes Differed from Others in Deficiencies, Staffing, and Financial Performance"
GAO: "Incapacitated Adults: Oversight of Federal Fiduciaries and Court-Appointed Guardians Needs Improvement"
Report: Spending For Hospice Care For Nursing Home Residents Has Increased 70% Since 2005
A July report from the Inspector General at Health and Human Services examines the growth in hospice care in nursing facilities and suggests that "Some hospices may be seeking beneficiaries with particular characteristics, including those with conditions associated with longer but less complex care." The report recommends that CMS monitor hospices that depend heavily on nursing facility residents and to modify the payment system for hospice care in nursing facilities. CMS concurred with both recommendations and with the suggestion that the current payment structure may incentivize hospices to seek out beneficiaries in nursing facilities who "often receive longer but less complex care." USA Today noted that the two largest for-profit hospice companies, Vitas and Gentiva, have spent $1.1 million on lobbying thus far this year, with a focus on a bill by Senator Ron Wyden (D-OR) that would require CMS to test a new payment system for two years. Medpac, which advises Congress on Medicare issues, expressed concerns in its March report on Medicare about the increase in longer hospice durations (suggesting that some patients may not meet the six month rule) and potential conflicts of interest between some nursing facilities and hospices. For more information, visit:
Office of Inspector General: "Medicare Hospices That Focus on Nursing Facility Residents"
USA Today: "Hospice lobbyists battle over Medicare payment system"
Medpac: "Report to the Congress: Medicare Payment Policy" (Chapter 11: Hospice)
Report: National Median Hourly Wage For Personal Care Aides Declined in 2010
LPHI PolicyWorks released its State Chart Book on Wages for Personal Care Aides earlier this month. The authors find that the national median hourly wage for Personal Care Aides (PCA's) declined from $9.46 in 2009 to $9.44 in 2010, driven by a drop in wages in 17 states. During the ten year period from 2000 to 2010, 23 states and the District of Columbia showed increases in real median wages, however, only four states showed annual increases of at least two percent. Thirty-four states reported average hourly wages that fell below 200% of the Federal Poverty Level ($10.42 an hour) in 2010, thus potentially qualifying workers for state and federal benefit programs. A federal bill has been introduced, the Direct Care Job Quality Improvement Act, that would eliminate the companionship exemption in the Fair Labor Standards Act that currently exempts home care workers from receiving a guaranteed minimum wage and overtime. The report by PHI includes state-by-state data. For more information, visit:
PHI: "State Chart Book on Wages for Personal Care Aides, 2000-2010"
FCA Legislation Center: "Direct Care Job Quality Improvement Act"
Study: Caregivers And Relatives Perceive Care Differently
A recent study interviewed 266 pairs of primary caregivers and their loved one with mild to moderate dementia and the results appear in the August issue of the Gerontologist. Each person was interviewed separately about five values: autonomy, burden, control, family, and safety. The authors found that adult children underestimated the importance of the five core values to their parents with dementia and that the discrepancies were associated primarily with the caregivers' beliefs about their loved one's involvement in decision making. They conclude that it is important for caregivers to gain a more accurate idea about their loved one's values and preferences, perhaps in the earlier stages of dementia, since caregivers will become the surrogate decision makers as the disease progresses. For more information, visit:
PennState Release: "Caregivers and their relatives disagree about care given, received"
Gerontologist: "Understanding Discrepancy in Perceptions of Values: Individuals With Mild to Moderate Dementia and Their Family Caregivers" (abstract is free)
FCA Fact Sheet: "Caregiver's Guide to Understanding Dementia"
Study: Hospitalists Associated With Shorter Hospital Stays, Increased Medicare Costs
A study in the August issues of the Annals of Internal Medicine analyzed the increasing role of hospitalists (doctors who work full time in hospitals) and found that for patients who were cared for by hospitalists, their lengths of stay were about a half day shorter and led to charges for the hospital that were $282 lower. However, Medicare costs in the 30 days after discharge were $332 higher, patients were less likely to be discharged to home, and were more likely to have ER visits and readmissions after discharge. The results were based on a 5% national sample of 58,000 enrollees in Medicare parts A and B with a primary care physician who were cared for by their primary care physician or by a hospitalist during a medical hospitalization from 2001 to 2006. In a posting about the results on The New Old Age, Jane Gross suggests that generalizing the study's finding to the roughly 25% of Medicare beneficiaries cared for by hospitalists equates to hospital savings of around $1 billion a year, but that an equal or greater amount is being paid for by taxpayers in the form of higher readmissions. For more information, visit:
Annals of Internal Medicine: "Association of Hospitalist Care With Medical Utilization After Discharge: Evidence of Cost Shift From a Cohort Study" (abstract is free)
New York Times: "Do Hospitalists Save Money?"
FCA Fact Sheet: "Caregiver's Guide to Discharge Planning"
Family Caregiver Alliance is sponsoring a webinar on September 20th at 12pm (Central) focused on the Texas Department of Aging and Disability Services (DADS) and efforts to implement a caregiver status questionnaire in its Medicaid functional eligibility determination process for HCBS as well as a caregiver assessment in it Older American Act, Title III-E programs. The process began in 2009 and participants will learn about the legislative history behind the assessment, the department's development and implementation processes, how the tool is used and administered, challenges and lessons learned, and future plans for assessing the program. Please note: This webinar is at 12pm Central Time (1pm Eastern, 12pm Central, 11am Mountain, 10am Pacific). For more information, or to register, visit:
FCA Webinar: "Focus on Texas: Caregiver Assessments"
The Agency for Healthcare Research and Quality (AHRQ) is sponsoring a webinar on August 18th at 2:30pm (Eastern) focused on health IT and the care of elderly patients. The webinar will focus on how health IT application can address some of the challenges of caring for elderly patients in different settings. Physicians will learn about health IT strategies that can be implemented in their own practices to improve healthcare decision making, support patient-centered care, and improve the quality and safety of medication management. The free webinar provides continuing education credits for physicians through the Wisconsin Medical Society. For more information or to register, visit:
AHRQ: "Medication Management using Health IT for the Care of Elderly Patients
Webinar: Focus On ACA And Quality Improvement Organizations: August 23
The Administration on Aging is sponsoring a webinar on August 23, from 2:00-3:30pm (Eastern) that is part of a series of webinars focused on the Affordable Care Act and its impact on the aging network. This webinar will focus on the launch of the 10th Scope of Work for CMS-funded Quality Improvement Organizations (QIO) and their relationship with the aging network. Presenters will discuss lessons learned from the 9th Scope of Work and highlight a successful partnership between a QIO and an Area Agency on Aging. For more information or to register, visit:
Administration on Aging: "Defining Communities: Care Transitions Partnerships between QIOs and the Aging Network"
Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards
The application deadline for the fourth annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards has been extended to September 16th. The awards are given in three categories, Creative Expression, Diverse & Multicultural Communities, and Policy & Advocacy. Each of the three award recipients receive a $20,000 award, and applications are invited from non-profits, government agencies, and universities. The new application deadline is September 16, 2011. For more information or to view the application, visit:
FCA: "Rosalinde Gilbert Awards Application"
Articles Focus On Caregiving Issues For Baby Boomers
Three recent articles focused on issues that adult children who are caregivers often face with their parents:
In Forbes Magazine, Carolyn Rosenblatt, an elder law attorney explains the importance of getting a diagnosis, which can help explain dementia-like behavior and ensure that medication interactions, infections, stroke, or even dehydration aren't to blame for memory or behavior problems. Using a friend's dad as an example, she provides four recommendations when a parent shows troubling behavior. They include getting a checkup from a reliable MD, preferably a neurologist who works with aging patients, locating and updating estate planning documents (while people are still competent to sign documents), planning ahead for possible care needs, and discussing the parent's situation with all of the family members during a family meeting.
An Associated Press/Washington Post article highlights a trend of adult children remodeling their homes to create spaces for their parents to move in with them. The National Association of Home Builders reports that 62% of builders they surveyed were working on a home modification related to aging in 2010. A builder interviewed for the story suggested that involving the parents in the conversation with a builder will make a transition smoother. A company in Indianapolis, called Next Door Garage Apartments, can convert a two-car garage into a complete apartment within ten days for $35,000. A woman whose mother-in-law came to live with them explained that the arrangement works well because her mother-in-law doesn't need complex medical care, the family got along well before living together, and the mother-in-law pays for her portion of utilities each month, thus retaining some independence.
A Sacramento Bee article addresses the importance of communication between adult children and their parents around long-term care issues, including end-of-life health care preferences and finances. Barbara Gillogly, a gerontology professor, explains that while conversations are awkward, "If people won't talk about it, they need to understand that at some point, somebody else will make those decisions for them... Do you want the state to make those decisions? Do you want your adult children to make their best guess? Or do you want them to know?" For more information, visit:
Forbes: "The Danger Of Your Aging Parent Covering Up Dementia"
Associated Press/Washington Post: "When an aging parent moves back in: tips for a smooth transition"
Sacramento Bee: "Never too early to discuss end-of-life issues with parents"
NOFA: The Veterans Transportation and Community Living Initiative (VTCLI)
A partnership between the Departments of Defense, Health and Human Services, Labor, Transportation, and Veterans Affairs published a notice of funding of $30 million to improve transportation options and mobility for veterans, service members, and their families. Applicants for the funding must be eligible to receive Federal Transit Administration funding (this includes public agencies like transit authorities, city/county governments, metropolitan planning organizations, or the state) and partnerships with Aging and Disability Networks are also encouraged. The application deadline is September 16, 2011. For more information, visit:
Veterans Transportation and Community Living Initiative Capital Grants Program
National Caregiving Recognition Award Will Provide $10,000 To Family Caregivers
Shire plc, a biopharmaceutical company, is administering the "Shire Brave Awards" of $10,000 each to acknowledge informal caregivers who are relatives, neighbors, or friends who regularly give their time, support and compassion to regularly help someone unable to care for themselves due to health or wellness issues. 2011 is the first year of the awards and the company expects to award up to ten awards this year and is committed to continuing the program in 2012 and 2013. The program is open to eligible nominees in France, Germany, Italy, Spain, the United Kingdom, and the United States. Nominations are due by August 31st. Family Caregiver Alliance is not connected to the awards and all questions should be directed to Shire plc. For more information about the award, visit:
Shire Brave Awards
Eleanor Clift: "Hospice And The End Game"
Eleanor Clift, a veteran reporter for Newsweek and a panelist on the McLaughlin Group, provides a poignant account of hospice care for her husband who passed away from cancer in 2005. Their experience, featured in the August issue of Health Affairs, connects the personally difficult decisions around end-of-life care with the policy issues- for example, the uproar over the Affordable Care Act's inclusion of compensating a doctor to have a discussion about a patient's preferences for end-of-life care. She explains that Senator Johnny Isakson (R-GA) who introduced the provision couldn't understand how an individual stating their end-of-life care preferences was somehow transformed into "death panels." She concludes: "There are those who every day-like my husband, Tom-receive terminal diagnoses and display great courage, surprising their family and friends, and perhaps even themselves. It's not unique to the human experience, and as people enter this last stage of life, they deserve the knowledge to make the choices that are right for them." For more information, visit:
Health Affairs: "Hospice and the End Game" (article is free)
Help Doctors Research Pulmonary Hypertension Treatment
If you or a loved one suffer with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) and the symptoms they bring - shortness of breath, fatigue, chest pain and more - consider participating in this research study of an investigational medication.By participating, you may help researchers learn more about this disease and evaluate the effectiveness and safety of an investigational medication. What's more, you may receive study-related care, monitoring and medication at no-cost to you. Take the online study questionnaire now to see if you may qualify. Go to www.phclinicalstudy.com today for more information
Study: Metastatic Renal Cell Carcinoma Patients Taking Torisel
Stevens, Blair & Company is conducting surveys on patients (or their family caregivers) who are currently taking Torisel or whom have taken it in the past year. The telephone interviews take 60 minutes and participants will be paid $100. The study is not promotional, participants will not be quoted in any way, and all information and identity will be kept confidential. For more information, call: 1-800-482-6660 or visit: Stevens, Blair & Company's Web Site: http://stevensblair.net/
Survey For Family Caregivers
Family Caregiver Alliance is partnering with several other caregiver organizations and experts to focus on assistive technologies and is administering a survey on the topic. Assistive technologies are defined as a piece of equipment, training, or intervention that promote greater independence by enabling individuals to perform task that they were formerly unable to accomplish or had great difficulty accomplishing. The anonymous survey takes about five minutes to complete and participant responses will help guide FCA and other provider organizations on what types of technology are most helpful for family caregivers and their loved ones. To participate in the survey, visit: https://www.surveymonkey.com/s/Survey_FCA
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