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|A Newsletter of FCA's National Center on Caregiving|
August 31, 2011
Volume XI, Number 16
State Legislation, Policy & Reports
- CA: Assemblywoman Requests Postponement Of Elimination Of Adult Day Health Care More...
- NY: Agreement Addresses How Crimes Against Disabled Are Reported More...
- CA: Survey Finds 2/3 Of Californians Worry About Cost Of Long-Term Care More...
- PA: Highest Number Of Enrollees For Pre-Existing Condition Program More...
- IA: State Won't Hire Additional Inspectors; CMS Won't Release Data More...
- NJ: County Office On Aging Focuses On Silent Seniors More...
Federal Legislation, Policy & Reports
- SuperCommittee Chooses Staff Member To Lead Panel More...
- Long-Term Care Fundamentals: Medicaid Waivers And Medicaid HCBS More...
- Two Research Reports Focus On Improving Care For Dual Eligibles More...
- Medicaid: States Shifting Medicaid Programs To Managed Care More...
- Canada: Ontario Premier Will Extend Family Caregiver Leave If Liberals Win October Election More...
Research Reports & Journal Articles
- Study: Caregiving Experience Different For Women Vs. Men; Spouses Vs. Children More...
- Study: Out-Of-Pocket Expenses For Cancer Care Average $1,266 A Month More...
- Study: Long Distance Caregivers Have Special Needs More...
- AHRQ: Nursing Home Survey On Patient Safety Culture Released More...
Conferences & Trainings
- Webinar: Focus On Texas: Caregiver Assessments: September 20th, 12pm Central More...
- Conference: 2011 National Lifespan Respite Conference, November 1-4 More...
- Webinar: Mental Health Needs of Family Caregivers: Identifying, Engaging and Assisting, Sept. 14th More...
Funding, Media & Miscellaneous
- 16 Days Left To Apply: Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards More...
- NCOA: Grants To Implement Benefits Enrollment Systems More...
- AARP: Grants To Address Hunger Among Older Americans More...
- Friday Morning Collaborative Survey On Coalitions Working On HCBS More...
- Person-Centered Care Domains Of Practice Released More...
- State Scorecard on Long-Term Services And Supports Report Forum Sept 8, 11:30am More...
- Help Doctors Research Pulmonary Hypertension Treatment More...
- Study: Metastatic Renal Cell Carcinoma Patients Taking Torisel More...
- Survey For Family Caregivers More...
If you are interested in having your study listed, please contact firstname.lastname@example.org
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State Assemblymember Mariko Yamada, the Chair of the Assembly Committee on Aging & Long-Term Care, held a news conference last week calling on Governor Brown's administration to delay the elimination of Adult Day Health Care as a Medi-Cal benefit until March 31, 2012. The benefit is currently slated to end on December 1, 2011, though a lawsuit has been filed to stop the elimination. At a hearing on August 16, Toby Douglas, the Director of the Department of Health Care Services, defended the administration's transition plans for 37,000 current enrollees and explained that the majority of people would be served by managed care. Assemblymember Holly Mitchell represents Los Angels which has a large number of Adult Day Health Care Centers and suggested during the hearing "...the reality is, there will be no place for these people to go...the reality is, X number of people simply will not be served." A hearing on the transition is scheduled for the Senate's Budget Sub-Committee for September 2, at 1pm. A hearing on a lawsuit over the elimination is scheduled for November. For more information, visit:
California Healthline: "Will Ending Adult Day Health Care Services Save State Money?"
CA Department of Health Care Services Adult Day Health Care (ADHC) Transition Strategy
Governor Cuomo announced earlier this month that the state is changing how complaints about abuse against the state's 126,000 developmentally disabled residents are handled. Traditionally, the Office for People With Developmental Disabilities, which runs over a 1,000 group homes and regulates others has relied on self-policing. However, The New York Times reports that Governor Cuomo forced out the commissioner of this office after media attention suggested that less than five percent of crimes were reported to law enforcement. This new agreement will require reporting of crimes to law enforcement authorities for issues including sexual contact between employees and residents, deaths when the cause is unknown, theft of client property, and intentional physical abuse by staff members. Michael Carey, whose son died in 2007 while in state care (the death was ruled a homicide) said it was a positive step forward, but noted that the agreement doesn't have the force of law behind it. For more information, visit:
A survey released earlier this month by the Scan Foundation and the UCLA Center for Health Policy Research of 1,490 Californian voters aged 40 and older found that 2/3 of respondents worry about the cost of long-term care and 2/3 could not afford more than three months of nursing home care if they were paying for it themselves. Thirty-eight percent of survey respondents reported having been a caregiver in the past 12 months, with 63% reporting that it is emotionally stressful, and 29% reporting financial hardships due to caregiving. Ninety percent of respondents had not heard of the CLASS program, though after hearing a description of it, 88% of respondents said they strongly or somewhat favor the program. For more information, visit:
Pennsylvania was recently profiled as the state with the most enrollees for its pre-existing conditions program with 3,617 participants. The Pre-Existing Conditions Plan (PCIP) program was included in the Affordable Care Act and was intended to provide health care coverage for people who would otherwise be denied because of pre-existing conditions. While original projections called for 375,000 enrollees by the end of 2010, only 27,489 people have enrolled as of June 30. Melissa Fox, a representative from the Pennsylvania Insurance Department, explained that the state charges relatively low premiums of $283 a month, and charges the same amount regardless of a person's health status. The eligibility criteria are fairly broad and the application process is only available online and takes 15-20 minutes to complete. A July GAO report examined differences in how states are running their programs, with 27 states opting to run their own program and 23 states letting HHS run their program. Monthly premiums ranged from $240 in Utah to $1,048 in Alaska, and participation and spending on the program are both lower than originally projected. Barriers for enrollment included the requirement that people are uninsured for six months prior to applying, unaffordable premiums, and lack of awareness. For more information, visit:
In July, the Des Moines Register asked the Iowa Department of Inspections and Appeals to release statistical data about nursing homes in the state who fail to meet minimum standards of care. The state contacted the Centers for Medicare and Medicaid Services (CMS), who cited ownership of the data and assumed control of the request. The newspaper originally filed the request citing an interest in whether Governor Terry Branstad has taken a less punitive approach to regulation of nursing homes. Ten nursing home inspector positions were eliminated earlier this year by Branstad, despite the agency successfully lobbying the state legislature earlier in the year for an additional $650,000 to fill the positions. While the department will still investigate specific complaints, a moratorium passed by the legislature banning routine inspections means that some residential care facilities won't be inspected for four and a half years unless a complaint triggers an inspection. For more information, visit:
The Monmouth County Office on Aging in New Jersey was recently profiled for its outreach efforts to connect with seniors aged 60 or older who may need assistance but who haven't asked for help. A representative explained that members of the public can contact the office and an outreach worker will contact the senior to assess the situation (including access to food and health status) and when appropriate, connect seniors with food delivery, transportation, and health care. The agency will also keep an ongoing connection with the senior, especially for those with few or limited other connections. For more information, visit:
The Joint Select Committee on Deficit Reduction, a group of six senators and six representatives chose Mark A. Prater to serve as the staff director of the committee. Prater is currently the chief tax counsel for Republicans on the Senate Finance Committee and the New York Times speculates that his selection may mean the committee will consider addressing the tax code as it attempts to identify $1.2 trillion in deficit reductions over the next ten years. The Center on Budget and Policy Priorities analyzed the results of raising the Medicare eligibility age from 65 to 67, and found that while this would generate $5.7 billion in net federal savings, it would shift costs and result in $11.4 billion in higher health care costs for individuals, employers, and states. For more information, visit:
New York Times: "Republican Staff Member, Steeped in Tax Law, Is Chosen to Lead Deficit Panel Staff"
CBPP: "Raising Medicare's Eligibility Age Would Increase Overall Health Spending and Shift Costs to Seniors, States, and Employers"
Long-Term Care Fundamentals: Medicaid Waivers And Medicaid HCBS
The Scan Foundation released two briefs earlier this month. The first brief, "What is a Medicaid Waiver?" provides an overview of the state application process for a waiver (to CMS), the different types of waivers, and also explains the Medicaid waivers currently operating in California. The second brief, "Medicaid-Funded Home and Community-Based Services" provides an overview of HCBS, with a focus on California. Because the programs have evolved over time in California, they are administered by several different state agencies and consumers must meet eligibility requirements and be approved by each program individually. In addition, the authors explain that Medicaid's bias towards institutional care means that HCBS programs are more likely to be cut during lean budget years. Scan also released a Data brief with a color-coded map of the U.S. that shows the percent each state spends on institutional care vs. HCBS. For more information, visit:
Scan Foundation: "What is a Medicaid Waiver? Long-Term Care Fundamentals"
Scan Foundation: "Medicaid-Funded Home- and Community-Based Services"
Scan Foundation: "Medicaid HCBS Spending"
Two Research Reports Focus On Improving Care For Dual Eligibles
Two recent reports focus on people who are eligible for Medicare and Medicaid and the challenges in improving the quality, coordination, and cost of care for this population. The Kaiser Foundation brief summarizes initial proposals from 15 states that were recently given contracts by CMS to better coordinate care for dual eligibles. The authors analyze a number of aspects within the plans, including service delivery models, target populations, proposed enrollment, benefit packages, financing arrangements, and beneficiary protections. The brief includes a one page analysis of each state's initial proposal, and final design proposals will be due to CMS by April 2012.
The report by the National Senior Citizens Law Center focuses on four areas of Medicare and Medicaid where the programs intersect and gaps occur. These include durable medical equipment, prescription drugs, skilled nursing services, and language access. The authors provide suggestions that they believe could be implemented without broad system overhauls, including: revising authorization procedures for both programs around medical equipment; better transfer of data between the two programs to prevent gaps in prescription drug coverage; collecting and using data on language preferences; improving transition policies (especially for Medicaid beneficiaries who become eligible for Medicare); and better enforcement of existing laws around language services in both programs and especially in rehabilitation services in skilled nursing facilities. For more information, visit:
Kaiser Foundation: "Proposed Models to Integrate Medicare and Medicaid Benefits for Dual Eligibles: A Look at the 15 State Design Contracts Funded By CMS"
National Senior Citizens Law Center: "Medicare and Medicaid Alignment: Challenges and Opportunities for Serving Dual Eligibles"
Medicaid: States Shifting Medicaid Programs To Managed Care
Kaiser Health News analyzed the politics, finances, and consumer impact as at least 20 states shift to managed care for their Medicaid programs. Texas is profiled for a recent shift to managed care in the Rio Grande Valley. While Texas state lawmakers had originally banned Medicaid managed-care from several Texas counties in 2003 (at the urging of doctors and hospitals), this was recently reversed in light of budget difficulties, a New Yorker article that focused on high Medicaid costs in McAllen (older and disabled Medicaid patients costs $15,311 a year on average) and an 18-month lobbying campaign by insurers. The authors suggest one issue that may have to be addressed by managed care companies is the area's average spending on home care and related long-term care services; at $4,791 per patient, it is twice the state's average. For more information, visit:
Kaiser Health News/Washington Post: " Insurers See Growing Risks As Well As Revenues In Medicaid Managed Care"
|Canada: Ontario Premier Will Extend Family Caregiver Leave If Liberals Win October Election
The Premier of Ontario, Dalton McGuinty, promised earlier this month to extend an existing unpaid family medical leave plan to also include people whose loved ones have a serious injury or illness. McGuinty also urged the federal government to make the caregiver leave time eligible for employment insurance benefits, similar to the existing family medical leave plan. Representatives of other political parties complained that the unpaid leave wouldn't help families who can't afford to go without income. Health Minister Deb Matthews also made a pledge that if Liberals are re-elected, they would spend up to $60 million a year to bring back doctor house calls for the elderly. For more information, visit:
The Globe and Mail: "McGuinty promises eight-week unpaid leave for family caregivers"
Toronto Star: "Liberals promise to bring back house calls for seniors and people with mobility issues"
Study: Caregiving Experience Different For Women Vs. Men; Spouses Vs. Children
A working paper that will be featured in a forthcoming issue of Family Relations examines how men, women, spouses, and children experience caregiving and how risk factors are different for these groups. Based on the results, the author suggests that agencies should tailor their services to the different types of caregivers. The authors measure negative caregiving, positive caregiving, care recipient problem behavior, caregiver involvement, reciprocal help from care recipient, availability of other caregivers, family conflict, support from friends or relatives, and caregiver demographics. Female and adult-child caregivers generally reported having more negative experiences than male and spouse caregivers, with wife caregivers the least likely to report positive experiences. Care recipient's problem behavior was the most important risk factor for wife caregivers having a negative experience, whereas positive experience was correlated with reciprocal help from care recipients, suggesting that caregivers need recognition and care from their care recipients. The author explains: "For family practitioners, the unique risk factors found in this study underscore the need to use adaptive interventions (Collins, Murphy, & Bierman, 2004) in helping caregivers, because while some risk factors are universal, others are not. Thus, when designing adaptive interventions to help caregivers, family practitioners and caregivers can start with common factors and then move on to unique ones." For more information, visit:
Bowling Green State University, The Center for Family and Demographic Research: "Negative and Positive Caregiving Experiences: A Closer Look at the Intersection of Gender and Relationships."
Study: Out-Of-Pocket Expenses For Cancer Care Average $1,266 A Month
A recent study used a nationwide survey of people with insurance to examine their out-of-pocket costs for their cancer treatments for breast, lung, or colorectal cancer. The study included 127 patients with a mean age of 65 years old, all of whom had health care insurance while 83% had prescription drug coverage. Seventy-three percent of participants had household income of less than $40,000 and 45% reported a significant or catastrophic financial burden due to out-of-pocket expenses. Out-of-pocket expenses totaled $1,266 a month and prescription medication represented the largest expense at $523 a month. In response, 47% of participants reported using all or part of their savings, 30% did not fill prescriptions, 20% took less medication than prescribed, and 40% borrowed money to pay for prescriptions. Patients experiencing greater financial burden also reported lower levels of satisfaction with their cancer care. For more information, visit:
Kaiser Health News: "A Need For Health Care Reform: Cancer Care Costs And The Patient Perspective"
American Medical News: "Oncologists confront "financial toxicity" of cancer care"
ASCO 2011 Meeting Abstracts: "Impact of out-of-pocket expenses on cancer care"
Study: Long Distance Caregivers Have Special Needs
A study released earlier this summer analyzed issues that are unique to long-distance caregivers (estimated at 14 million people by 2012) and the challenges that they can present to health care professional as well as family members who live locally. In the interviews with 14 distance caregivers (all of the care recipients had cancer), several common themes emerged, including a lack of feeling of control and lack of knowledge. In addition, distance caregivers are unsure about when to visit and some are constrained from traveling by young children and financial constraints. While many distance caregivers sought information online, they wanted more information from health care professionals and felt a need to stay connected by hearing regular updates. In addition, when a parent of an adult child is ill, they may withhold information out of a sense of wanting to protect their adult children. The author speculates that technology devices like Skype may help improve communication between local and long-distance caregivers, patients, and health care professionals For more information, visit:
Oncology Nursing Forum: "Lack of Communication and Control: Experiences of Distance Caregivers of Parents With Advanced Cancer" (article is free)
Oncology Nursing Society Podcast Interview with Lead Author Dr. Polly Mazanec
AHRQ: Nursing Home Survey On Patient Safety Culture Released
AHRQ recently released results from a survey of 226 nursing homes and 16,515 nursing home staff that measures the culture of resident safety in nursing homes from a staff perspective. The survey measures 12 areas of patient safety culture. Of the participating nursing homes, 48% are for profit. The areas of strength include the overall perception of resident safety (average 86% positive response), and feedback and communication about incidents (average 84% positive response). Areas for improvement include non-punitive responses to mistakes (average 51% positive response), and sufficient staffing to handle the workload, meet resident's needs, and keep residents safe (52% positive response).
The report compares responses to questions about patient safety, whether or not an employee would tell a friend it is a safe nursing home, and overall safety ratings. Non-profit/government nursing homes and smaller nursing homes (49 or fewer beds) had the highest ratings for patient safety culture, highest rating of respondents who would tell friends this is a safe nursing home, and the highest percentage of respondents who gave their nursing homes an overall rating of "excellent" or "very good."
Administrators/Managers and Physicians gave the highest positive responses across patient safety culture composites (79% positive) while Nursing Assistants/Aides gave the lowest (63% positive), with similar gaps between whether or not a person would make a referral for friends and overall ratings on resident safety of "Excellent" or "Very Good." There were also differences in respondent's views on patient safety based on whether or not the respondent had direct interaction with residents; those with direct interaction were more negative than those who do not interact directly with residents. Respondents who worked day shifts also gave higher ratings as compared to those who worked night shifts. For more information, visit:
AHRQ: "Nursing Home Survey on Patient Safety Culture: 2011 User Comparative Database Report"
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"
FCA: Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers
This year's 2011 National Lifespan Respite Conference will be held in Glendale, Arizona from November 1-3, 2011, followed by a Lifespan Respite Grantee/Partner Meeting on November 4, 2011for Lifespan Respite Grantees and designated partners only. The conference is being hosted by the AZ Caregiver Coalition in collaboration with the ARCH National Respite Network. The theme of this year's conference, The Many Faces of Respite, will celebrate cultural diversity among family caregivers and will explore innovative and culturally responsive respite services to support caregivers. Early bird registration ends September 16, 2011. For more information visit:
2011 National Lifespan Respite Conference: The Many Faces of Respite
Webinar: Mental Health Needs of Family Caregivers: Identifying, Engaging and Assisting, Sept. 14th
The Administration on Aging and the American Psychological Association are sponsoring a webinar on Wednesday, September 14, from 2-4pm (Eastern) focused on the mental health needs of family caregivers and effective interventions and resources to support those needs. Participants will learn about the demographics of caregivers; the range of mental health issues that may occur; strategies to identify and engage family caregivers experiencing strain; effective interventions; and resources to support caregivers, including APA's Family Caregiver Briefcase. Speakers include Barry Jacobs, Psy.D, William Haley, PhD, Deborah DiGilio, MPH, and Greg Link, MA as moderator. For more information or to register, visit:
Administration on Aging: "Mental Health Needs of Family Caregivers: Identifying, Engaging and Assisting"
American Psychological Association Family Caregiver Briefcase
Family Caregiver Alliance Fact Sheet: "Caregiver Health: A Population at Risk"
16 Days Left To Apply: 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 is 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 application deadline is September 16, 2011. For more information or to view the application, visit:
FCA: "Rosalinde Gilbert Awards Application"
NCOA: Grants To Implement Benefits Enrollment Systems
The National Council on Aging is funding 5-10 grants of $50,000 to $100,000 for the implementation of significant innovations that improve benefits enrollment systems and community-based assistance for seniors and adults with disabilities. The grant is for 12 months and the deadline is October 31. For more information or to apply, visit:
NCOA: Grants To Implement Benefits Enrollment Systems
AARP: Grants To Address Hunger Among Older Americans
The AARP Foundation is providing a total of $1 million in grants (ranging from $50,000 to $300,000) for nonprofits that focus on food security and sustainable food systems for Americans aged 50 and older. Letters of inquiry are due by September 15th. For more information or to apply, visit:
AARP: Hunger Among Older Americans
Friday Morning Collaborative Survey On Coalitions Working On HCBS
The Friday Morning Collaborative, a coalition of national aging and disability organizations, is gathering a list of state-based organizations that work on issues related to Medicaid Home and Community-Based issues. The Collaborative is using an online survey to identify these coalitions and this information will be used in advocacy efforts for Medicaid HCBS. To take part in the survey, or for more information, visit:
Friday Morning Collaborative Survey
Person-Centered Care Domains Of Practice Released
CMS announced in 2009 that it intended to define community living and use a definition across all Medicaid HCBS programs. In response to a notice of these proposed rules, the Center for Excellence in Assisted Living (CEAL) released its recommendations for person-centered HCBS attributes and assisted living indicators earlier this summer. The recommendations include attributes for all HCBS settings as well as indicators that are solely for assisted living. The authors explain that "A service planning and operational process that is focused on PC is able to deliver on the core promises of assisted living including: maximizing privacy, autonomy and choice, meaningful access to the surrounding community, experiencing meaningful life and engagement and quality care." The document includes suggestions for nine domains with indicators for each domain.For more information, visit:
CEAL: "Person-Centered Care Domains of Practice"
State Scorecard On Long-Term Services And Supports Report Forum Sept 8, 2011
AARP, The Commonwealth Fund, and The Scan Foundation are releasing a report on September 8, in Washington DC focused long-term services and supports. The report, "Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities and Family Caregivers" provides a broad evaluation of how states perform, identifies areas of improvement, and highlights policies that result in better performance. The release includes a discussion of the report at the forum, and the event will also be webcast. For more information, visit:
AARP Public Policy Institute
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.
Stevens, Blair & Company
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:
Survey for Family Caregivers
|To find caregiver support services in your state, visit FCA's Family Care Navigator http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083|
?2011 Family Caregiver Alliance. All rights reserved.
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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