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|A Newsletter of FCA's National Center on Caregiving|
September 28, 2011
Volume XI, Number 18
State Legislation, Policy & Reports
- MN: Family Members Will Be Paid 20% Less Starting October 1 More...
- CA: Middle-Aged Caregivers Face Most Health Risks More...
- NY And DC: Legal Settlements Will Lead To More Community Living More...
- FL: Senate Report Calls For Stronger Regulation Of Assisted Living Facilities More...
- Report: Most Medicaid Beneficiaries Are Enrolled In Managed Care More...
- Seattle: Paid Sick Leave Enacted More...
Federal Legislation, Policy & Reports
- CLASS Program May Be Stopped Or "Paused" More...
- FY 2012 HHS Spending Bill Continues Most Funding At FY 2011 Levels More...
- UK Government Report On Adult Social Care More...
- Ontario Report: 4,500 Patients Currently In Hospital Beds Should Be Elsewhere More...
Research Reports & Journal Articles
- Caregiver Assessments For Doctors And Their Staff More...
- Report: CA Medicaid HCBS Waivers, Benefits, Eligibility From 2005-2008 More...
- Report: Increased Housing Costs Could Limit Ability To "Age At Home" More...
Conferences & Trainings
- Caregiver Assessment Webinar Now Archived More...
- Webinar: Incontinence Care For Family And Professional Caregivers: Oct 5th More...
- Webinar: Vulnerable Medicare Beneficiaries: Opportunities To Transform Care, Oct 13 More...
- Conference: 2011 National Lifespan Respite Conference, November 1-4 More...
- Conference: NRCPDS 4th Annual Biennial Financial Management Services, Nov. 14-15 More...
- Families USA: Facebook Q&A On Medicaid, Medicare, ACA, Sept. 29 More...
Funding, Media & Miscellaneous
- Focus On Youth Family Caregivers More...
- The New Old Age Blog: Is Lying To Parents Unethical? More...
- Too Many Medical Tests For Elderly More...
- New HHS Website Focuses On LTC; Two Surveys Focus On LTC Financing More...
- Timeslips Interactive Website Launched More...
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The State of Minnesota will enact a 20% reimbursement rate cut for Personal Care Assistants (PCA) who are caring for a family member on October 1, 2011. A relative is defined as a parent or adoptive parent of an adult child, a sibling aged 16 or older, an adult child, a grandparent, or grandchild. According to the Direct Care Alliance, the state estimates that 28% of all PCA's meet this definition of relative, which the Minnesota Star Tribune estimates is about 7,000 Minnesotans. The Tribune profiled Rob Gendreau, a 39-year old who suffered a traumatic brain injury in a 1999 car accident. Rob receives $1,005 a month from Social Security Disability, however $499 is used to "spend down" so that he qualifies for Medicaid. His mom, Linda Gendreau, currently earns $11 an hour to provide care for him, but on October 1, her pay will be reduced to $8.80 an hour. She explained to the Tribune: "OK, here's my long-term goal...I stay healthy until I'm at least 85. Rob is 65 then, and we'll go into the nursing home together, so I can still take care of him." The Direct Care Alliance explains that Governor Dayton publicly stated that he "deeply regretted the lack of oversight (both his own and that of DHS administrative staff) that led to the passage of this cut..." While the cuts are planned to take effect on October 1, public comments on the rate reduction are being accepted until October 17th. For more information, visit:
Public Comment Form for Rate Cut
Minnesota Star Tribune: "The Personal costs of budget cuts"
Direct Care Alliance Blog: "Minnesota Personal Care Assistants Face 20% Pay Cut"
FCA Blog: "Are Family Caregivers Worth Less?"
A recent research brief on California family caregivers finds that middle-aged caregivers are at greater health risks for caregiving as compared to older caregivers. One-third of California caregivers live with the care recipients, and these caregivers provide 36 hours of care per week which the authors note is almost a full-time job. Only 7.4% of caregivers report receiving compensation for the care they provide, and 20% report that they spent over $250 of their own money on caregiving in the past month. Older caregivers are more likely to care for a spouse or partner (29.8%), live with the care recipient (45.2%), provide more hours of weekly care (32.2 hours), and care for longer durations (61.8 months). Middle-aged caregivers are more likely to binge drink (25.2%), smoke (15.9%), and/or be obese (30.1%) than both non-caregivers of the same age and older caregivers. Middle-aged caregivers exhibited poorer health status (9.8% with diabetes, 6.8% have heart disease, 34.3% have high blood pressure), and 58.1% report that they have a full-time job in addition to caregiving. The authors note that existing supports for caregivers have faced cuts (for example IHSS) or elimination (Adult Day Health Care) and suggest that "The current long-term care system-with its heavy reliance on unpaid, informal care-will likely be unsustainable in the long run." California announced last week that it was abandoning a plan to add 1,000 additional slots for the Multi-Senior Service Plan (MSSP) as part of its transition to eliminate Adult Day Health Care. A state representative explained that these slots were dropped because there are already 1,600 people waiting long periods of time for MSSP. For more information, visit:
The New York state and Washington DC governments are both nearing closure on cases related to the residential options provided to mentally ill residents. According to the New York Times, the New York case was first filed in 2006 and focuses on whether or not the state offers sufficient options for people who are capable of living independently within the community. Under the settlement, which is expected to impact over 1,000 people, the state agreed to reform the assessment process for determining if a person can live independently and will hire independent contractors to conduct the assessments. The settlement also creates a three-year deadline for the state to move qualified people into the community and commits the state developing 200 new units of supportive housing. The Washington Post reported that a settlement in Washington, DC, will pave the way to end court oversight of its services for the mentally ill. A case was originally filed in 1974 to force the city to provider alternatives to institutionalization, while some progress was made, the city's mental health department was placed into receivership in 1997. The city also agreed to build 300 additional housing units and add $3.5 million to the budget to fund improvements. For more information, visit:
The Bellingham Herald reports that a legislative study conducted by the Florida state Senate is highly critical of the FL Agency for Health Care Administration (AHCA) and its current approach to regulating assisted living facilities (ALF's). The authors recommend stripping AHCA's discretion about the amount of fines imposed on ALF's when serious abuses like intentional death or negligence occur or if deficiencies are recurring. The authors also recommend that the state consider implementing more stringent training/qualifications for administrators and front-line staff of ALF's The authors also recommend designating one state agency as the "lead agency" for regulation of ALF's, and establishing a work-group of current regulators to streamline inspections. Finally, the senate staff recommends the creation of a consumer website, similar to Nursing Home Compare, that would allow consumers to compare quality of ALF's. For more information, visit:
The Kaiser Commission on Medicaid and the Uninsured released results from a survey earlier this month focused on the national trend of states relying on managed care programs to deliver services through Medicaid. The authors find that two-thirds of Medicaid beneficiaries (nationally) are enrolled in managed care programs, including risk-based managed care organizations (MCO) and primary care case management programs (PCCM). More than two-thirds of responding states report that Medicaid beneficiaries in MCO's sometimes experience access problems, especially for dental care, specialists, and other behavioral health providers. However, improved access to primary and specialty care was cited most often as a perceived benefit of managed care (as compared to fee-for-service). Thirty-nine states report that medical home initiatives have been started in their states to better coordinate care for beneficiaries with more complex needs, while over half of states operate PACE sites, with a total national enrollment of about 20,000. Twenty-five states report that dual eligibles are enrolled in Medicaid managed care in 2010, on a voluntary or mandatory basis. For more information, visit:
The Seattle City Council approved legislation earlier this month to mandate paid sick leave for all businesses with at least five full-time employees starting in September 2012. Employees can use the leave to care for themselves or an ill family member. The leave will accumulate at one hour for every 40 hours worked at smaller (5-49 employees) and mid-size (50 to 249) companies, and will accumulate at one hour for every 30 hours worked at large (250+) companies. Smaller employers (5 to 49) will have to provide at least five days of paid sick leave annually, while employers with 50 to 239 employees will have to provide at least seven paid sick days, and larger companies (250+) will have to provide at least nine sick days annually. New companies that are less than two years old will be exempt. Seattle joins San Francisco, Washington DC, and the state of Connecticut in mandating paid leave. The council president, Richard Conlin, was the only person who voted against the leave, citing the fact that 39,000 "very small" companies will be exempt, and that the sick-leave requirement can be waived as part of collective bargaining. For more information, visit:
Media reports last week suggests that planning for the CLASS Act, the nation's first voluntary social insurance program, may have been either stopped or "paused." The Congressional Budget Office had suggested that the start of the program would be delayed by a year, and Bob Yee, the chief actuary for planning the program, sent an email to colleagues last week that was made public which said he was leaving his position because the office was shutting down. In addition, the most recent HHS spending bill did not include $120 million originally requested for starting CLASS. Representatives from HHS have not definitively stated whether or not the program will be shuttered, though Secretary Sebelius has stated on several occasions that the program would not be started if it was not sustainable. For more information, visit:
California Healthline: "Lawmakers Question Sebelius on Future of Reform Law's CLASS Act"
FCA Blog: "If CLASS is Shelved, is it back to the Status Quo?"
FY 2012 HHS Spending Bill Continues Most Funding At FY 2011 Levels
The Senate Appropriations Committee passed the FY 2012 spending bill for the departments of Labor, Health and Human Services, and Education earlier this month and ARCH National Respite Coalition provided a summary of the bill's impact on family caregivers. Funding for the National Family Caregiver Support Program ($153.9 million) and Lifespan Respite ($2.4 million) continues at FY 2011 levels while $120 million originally requested for the CLASS program was not included. Funding for Alzheimer's disease demonstration grants were funded at a reduced level ($4 million), while Aging Network Support Activities (Eldercare Location, Pensions Information and Counseling Program, and Senior Medicare Patrols) were reduced by $10 million from FY 2011. Senior nutrition programs, including congregate and home-delivered meals were kept at a level amount for FY 2011, while LIHEAP was reduced by $1.1 billion. The State Paid Leave fund, which would have provided grants to states to develop paid leave programs, was not funded by the committee, though the president's request was for $23 million. Geriatric education programs were funded at $33.5 million, less than the $43.7 million requested by the president. Funding for the Traumatic Brain Injury Program was level with FY 2011. For more information, visit:
S. 1599 HHS, Labor, Education Spending Bill
|UK Government Report On Adult Social Care
The UK Care Quality Commission released its third annual "State of Care" report that provides data on health and social care. There were 4,608 care homes with nursing as of July 2011, and caring for older people and people with dementia is the most common type of care provided. Approximately 45% of care home residents are self-funding their stays (as compared to the government paying). Thirteen percent of adults and carers who received council-funded social care were able to self-direct in 2009/10. The authors suggest that "the reduction in social care budgets and increased demand is resulting in local authorities tightening their eligibility criteria for people to receive state-funded community care." For more information, visit:
UK Care Quality Commission: "State of Care 2010/11"
Ontario Report: 4,500 Patients Currently In Hospital Beds Should Be Elsewhere
A report commissioned by the Ontario Health Ministry and released earlier this summer suggests that Ontario's infrastructure for long-term care is in need of improvement, especially in regards to assessing patients and connecting them to appropriate levels of care. The author suggests that the current system relies heavily on acute care hospital resources and a culture that focuses on permanent placement of seniors instead of remaining at home with supportive services. This culture often leads to patients being admitted to the ER, then acute care hospital admission, and then waiting in a hospital bed while waiting for alternate levels of care. Recommendations are grouped into six "pillars," including: primary care, community care continuum, special needs populations, acute care hospitals, assess and restore, and LTC community. A story about the report in the Star suggested that the report was belatedly posted to the government's health ministry website two months after it was completed on the eve of elections in Ontario. For more information, visit:
Report: Caring for Our Aging Population and Addressing Alternate Level of Care (ALC)
The Star: "Seniors languish in hospital beds waiting for proper care, hushed report says"
Caregiver Assessments For Doctors And Their Staff
A clinical review published earlier this month explains the importance of caregiver assessments for doctors caring for older people. The authors explain that doctors are well-positioned to identify caregivers, but because of limited time, suggest doctors identify caregivers, briefly assess their needs, and refer to a staff member in the office with interest and training in caregiving issues. Because caregivers often don't self-identify and may be reluctant to accept support, doctors may want to suggest a trial approach, appealing to other family members, or appealing to the importance of maintaining the caregiver's health so that they can assist the patient. The review provides a model assessment which is linked to interventions. In a response to the paper, two authors who developed an assessment tool for use in hospice and palliative care, suggest that time constraints aren't necessarily as challenging as suggested. They also suggest dividing the support domains for caregivers into supports to enable them to be better caregivers and also into supports for them as individuals who have their own needs due to their caregiving status. They also caution against using a template for interventions, suggesting that this may close other possibilities. For more information, visit:
BMJ: "Assessing and helping carers of older people" (article is free)
BMJ: Replies to ""Assessing and helping carers of older people"
Report: CA Medicaid HCBS Waivers, Benefits, Eligibility From 2005-2008
A new report from the California Medicaid Institute at UCSF analyzes data on California's Home and Community Based Services (HCBS) waivers from 2005-2008. California's HCBS waivers have been started at different points in time and are managed by different state agencies, a move that has led to confusion for consumers who are navigating long-term care options. The authors explain that the growing cost of these programs for the state, as well as an expected increase in demand, suggests two questions to policymakers. The first question is the relationship between participation in an HCBS program and the use of institutional settings. The second question is whether or not participation in an HCBS program reduces a person's use of ER visits, hospital stays, and total Medi-Cal spending. The report provides a concise snapshot of all of California's waiver programs, including participation, cost, financial eligibility rules, and history of the program. IHSS, the state's Personal Care Service Program, paid for, on average, 21.4 hours of week in 2008, while the authors note that the national average of care provided (both paid and unpaid) is 31.4 hours a week. For Adult Day Health Care, the program served an average of 41,542 clients at a monthly cost of $879, and total annual expenditures of about $430 million in 2008. For more information, visit:
California's MediCal Home & Community Based Services Waivers, Benefits & Eligibility Policies, 2005-2008
Report: Increased Housing Costs Could Limit Ability To "Age At Home"
A report from the AARP Public Policy Institute analyzes the impact of the mortgage meltdown on older Americans, and suggests that rising housing costs may challenge people's ability to remain in their homes. In addition, decreased property values may limit homeowner's ability to rely on a house as a financial cushion. The report analyzed homeowners with mortgages and without, as well as renters, and how "housing cost burdened" (defined as spending more than 30% of income on housing) the groups are. For homeowners aged 50+ with mortgages, 36% are now considered housing cost burdened, an increase from 29% in 2000. Fifteen percent of homeowners aged 50+ with mortgages are using at least 50% of their income for housing costs. For people aged 50 or older in the lowest income quartile (under $23,128), 78% of renters and 96% of homeowners with mortgages are housing cost burdened. Michelle Singletary, a Washington Post columnist, recently addressed new Census numbers that 21.8 million Americans were "doubled up" for housing in 2011- a two million person increase from 2007, when only 19.7 million people were "doubled up." Her column provides some practical guidance for adult children living with their parents. For more information, visit:
AARP PPI: "Housing for Older Adults: The Impact of the Recession"
Washington Post: "'Doubled-Up' households need clearly established roles"
An FCA webinar earlier this month focused on the Texas Department of Aging and Disability Services (DADS) and their process for implementing a caregiver assessment and caregiver status questionnaire in their Area Agencies on Aging and Medicaid HCBS programs. The audience asked over 20 questions about the implementation process and DADS has provided written answers to the questions. An archive of the webinar, the PowerPoint slides, the questions and answers, and other resources are now available on the FCA website. For more information visit:
FCA: Webinar Archive of "Focus on Texas: Caregiver Assessments"
Caregiver.com and Today's Caregiver are hosting a webinar on incontinence care on October 5, at 2:30pm (Eastern). Michelle Mongillo, RN, MSN, will present on techniques for managing incontinence at home, reducing the frequency of incontinence episodes, and tips for dealing with incontinence and dementia. For more information or to register: visit:
Best Practices: Incontinence Care
Webinar: Vulnerable Medicare Beneficiaries: Opportunities To Transform Care, Oct 13
The Scan Foundation is hosting a Policy Roundtable Series webinar focused on Medicare beneficiaries with chronic conditions and functional impairment on October 13, at 11:00am (Pacific). Presenters will discuss the release of new data on spending and services used by this population and address how this data can inform policy-making to better integrate medical care and LTSS. Presenters include Bruce Chernof, MD; Elana Stair, M.S.c.; Harriet Komisa, Ph.D.; Judy Feder, Ph.D.; and Steven Counsell, MD. For more information or to register, visit:
Scan Foundation: "Vulnerable Medicare Beneficiaries: Opportunities to Transform the System of Care for Seniors with Chronic Conditions and Functional Limitations."
Conference: 2011 National Lifespan Respite Conference, November 1-4
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. Discounted hotel rooms ends this Friday, September 30, 2011. For more information visit:
2011 National Lifespan Respite Conference: The Many Faces of Respite
Conference: NRCPDS 4th Annual Biennial Financial Management Services, Nov. 14-15
The National Resource Center for Participant Directed Services is hosting its 4th biennial financial management conference on November 14 and 15th in Baltimore, MD. The conference will feature workshops with participant direction tax experts within the Internal Revenue Service and other financial management specialist and experts. The conference is divided into two tacks: the Strategic Track and the Tactical Track. For more information or to register, visit:
NRCPDS Financial Management Services Conference
Families USA: Facebook Q&A On Medicaid, Medicare, ACA, Sept. 29
Families USA is co-hosting a Facebook chat with MomsRising to answer consumer questions, especially from the "sandwich generation" about health care coverage questions for both their aging parents and their children, including Medicare and Medicaid questions. Consumers can provide questions in advance on MomsRising's facebook page or during the chat and they will be answered by experts at Families USA. For more information, visit:
MomsRising Facebook Page
MomsRising Description of Event
Focus On Youth Family Caregivers
ASA Aging's September/October issue of Aging Today focuses on the American Association of Caregiving Youth (AACY) that was founded in 1998 to identify and support young caregivers in the U.S. The group was founded by Connie Siskowski, who was a caregiver for her grandfather while she was 13 years old. While completing her doctorate, Siskowski studied the prevalence of caregiving at a school district in Palm Beach, FL, and found that more than 1/3 of high-school age caregivers had issues with missing school and not doing homework because of caregiving duties. A 2005 study by the National Alliance on Caregiving found that there are 1.3 to 1.4 million children (ranging in age from 10 to 20) serving as caregivers, while a 2006 report by the Bill and Melinda Gates Foundation suggested that 22% of high school dropouts leave to provide care for a family member. AACY now has 395 active students and works with eight middle schools, with an overarching role of identifying students, assisting them with skill-building, and providing support. Siskowski suggests that one unforeseen consequence of aging in place is that youth caregivers may be relied on more heavily to assist grandparents who may have otherwise been in a nursing home. For more information, visit:
Aging Today: "Shining A Light on Young Caregivers"
American Association of Caregiving Youth
The New Old Age Blog: Is Lying To Parents Unethical?
The New Old Age blog recently addressed an issue faced by many caregivers: whether or not white lies are ethical. Paula Span, who wrote the blog posting, distinguishes between lying to a parent with dementia and lying to a parent who is stubborn, unwilling to stop driving, or unwilling to spend money they have saved. While two ethicists she interviews are mostly opposed to lying, some family caregivers responding to the blog posting supported fibbing, especially if they allowed a loved one to age at home, concerned driving safety, or were about the cost of a service. One family caregiver noted that "fibbing" can often be a two-way street, with parents insisting that they are okay to drive, or can handle the bills. For more information, or to contribute your own thoughts, visit:
NYT The New Old Age: "White Lies and Worse"
Too Many Medical Tests For Elderly
Kaiser Health News recently addressed whether or not elderly people are given too many medical tests. The article profiles an 80-year woman who receives a mammogram every year, a colonoscopy every three to five years, and her 83-year old husband who faithfully gets PSA tests to check for prostate cancer. Some doctors and researchers suggest that some tests are inappropriate because they are for slow-growing diseases and treatment may reduce the quality of life. Dr. Lisa Schwartz, cites an example of a 78-year old man who was left incontinent and impotent after radiation treatment for prostate cancer. Prostate Cancer generally grows slowly and many men die with it- but not because of it. The U.S. Preventive Services Task Force makes recommendations about screening tests and does not endorse PSA testing or routine colon screening after the age of 75. However, the article cites numerous studies finding that doctors don't necessarily adhere to these guidelines, possibly because of habit, financial incentives, fear of missing something important, or anger from a patient or family member who doesn't want to hear that a patient doesn't need to be screened because they are too old or sick to benefit. For more information, visit:
Kaiser Health News: "Concern Is Growing That The Elderly Get Too Many Medical Tests"
New HHS Website Focuses On LTC; Two Surveys Focus On LTC Financing
The National Clearinghouse for Long-Term Care Information Website was recently redesigned.
The new site provides an easily navigable layout for consumers interested in learning more about planning long-term care and how it is financed, including Medicaid and long-term care insurance.
A survey released earlier this month by the California Partnership for Long-Term Care finds that while consumers are more knowledgeable about long-term care costs, this hasn't translated to Californians purchasing long-term care insurance policies. The reason most cited by survey respondents for not buying long-term care insurance was that it would cost too much (59.2%), followed by 54.7% of respondents who said "my family and I haven't really given much thought to purchasing insurance to pay for long-term care expenses." The survey did not ask about LTC insurance premium increases, though 28.8% of respondents agreed with the statement that "long-term care insurance companies cannot be trusted to pay for the benefits they promise to provide" as a reason they had not purchased long-term care insurance.
Another study, conducted by the NPR, Robert Wood Johnson Foundation and the Harvard School of Public Health examined retiree and pre-retiree attitudes about retirement, health, finances, and other issues. Interestingly, only 38% of pre-retirees and retirees "expect that Medicaid will be very important for them personally during their retirement," while the numbers jump to 65% (pre-retirees) and 74% when speaking about Medicare. Another question asked "If you (or your spouse/partner) were to need care in a nursing home for three months (100 days) or more, how would the majority of costs be paid?" Thirty-two percent of pre-retirees answered Medicare and 43% of retirees answered Medicare, while 10% of pre-retirees answered Medicaid and 7% of retirees answered Medicaid. For more information, visit:
National Clearinghouse for Long-Term Care Information
CA Partnership for Long-Term Care Survey Results
Retirement and Health Poll
Timeslips Interactive Website Launched
The Creative Storytelling Project recently launched a new website, Timeslips.org, that is intended to allow people with dementia and their caregivers to read, create, and share stories, based on hundreds of images and questions provided on the website. Visitors to the website are given pictures with prompting questions to start a conversation, and/or write a story to share with other visitors. Visitors can also read stories about the pictures on the site, for example, a picture of a baby sitting in a suitcase prompted the story called "Travelling Baby" about a boy named "Sam" (for Samsonite) who loved to travel. For more information, visit:
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