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|A Newsletter of FCA's National Center on Caregiving|
December 21, 2011
Volume XI, Number 24
State Legislation, Policy & Reports
- PA: Governor Can Now Sign Update Of Family Caregiver Support Program More...
- VT: Advocates Sue State Over Slow Response To APS Complaints More...
- NC: Report Suggests Better Employment Supports For Family Caregivers More...
- State Variation In SSDI Applications; New Report Will Focus On SSDI Judges More...
- CA: Judge Temporary Halts 20% Cuts To IHSS More...
Federal Legislation, Policy & Reports
- Caregiver Initiative Left Out Of FY 2012 Budget, Payroll Tax Cut In Limbo More...
- Companionship Exemption May Be Removed More...
- Long Term Services And Supports Opportunities In Affordable Care Act More...
- New Reports On Medicaid, Including HCBS Data, Dual Eligibles, And MFP More...
- Canada: Caregiving Leave Legislation Introduced More...
Research Reports & Journal Articles
- 2010 National Survey Of Residential Care Facilities More...
- Land Use, Transportation, And Housing Policies That Enable Aging In Place More...
Conferences & Trainings
- Aging In America Conference 2012 Conference More...
Funding, Media & Miscellaneous
- New Consumer Guide To LGBT Caregiving More...
- Jane Gross Asks: Are Family Caregivers "Mad As Hell?" More...
- Award For America's "Best Intergenerational Communities" More...
- 'Twas the Night Before Christmas Adapted For Caregivers More...
- Cautionary Tale For Organizations And Employees On Health Data Theft More...
- Clinical Trial Recruiting Stroke Patients More...
- Lewey Body Dementia Association Survey More...
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Legislation updating Pennsylvania's Family Caregiver Support Program was passed unanimously by the state Senate earlier this month and is now sitting on Governor Corbett's desk, awaiting his signature. The law updates several provisions in the program, including increasing the maximum amount of assistance that a caregiver (for a care recipient whose household income levels are 200% or less of FPL) could receive for out-of-pocket expenses including respite services, other supportive services, and consumable supplies like incontinence pads. The bill also broadens the definition of caregivers to include non-relative caregivers and removes the requirement that the caregiver must live with the care recipient in order to qualify for services. For more information, visit:
DailyReview.com: "Baker's Caregiver Support Program bill passes Senate"
FCA Legislation Center: House Bill 210
VT: Advocates Sue State Over Slow Response To APS Complaints The Bennington Banner reports that Disability Rights Vermont and the Community of Vermont Elders is suing the state for not responding in a timely manner to cases reported to Adult Protective Services. The two groups suggest that APS investigators have caseloads that are twice as large as the national average, and that the state has not met the terms of a corrective plan put in place in May of this year. Susan Wehry, the commissioner of Disabilities, Aging, and Independent Living suggested that the state is making progress both on solving the immediate problems facing APS and on broader plan to improve APS. For more information, visit:
A new report from the North Carolina Justice Center provides policy recommendations for state leaders to better support family caregivers who are providing child care and elder care. Recommendations include paid sick leave, family leave insurance (currently offered in NJ and CA), broadening the definition of family beyond the Family Medical Leave Act, and more flexibility in the workplace. The authors also suggest that Family Responsibility Discrimination is a growing issue in North Carolina and nationally. Two laws that have been introduced in North Carolina are cited in the report, including a paid sick days bill and a bill that would broaden the FMLA's definition of family. For more information, visit:
A new working paper from the Center for Retirement Research Center at Boston College examines the large variation in Social Security Disability Insurance application rates between states. The authors find that health, demographics, and employment explain over 70% of the variation in total SSDI application rates. State-mandated private temporary disability insurance as well as having a Republican governor are both associated with lower application rates, though the two variables only explain 4% of the variation. States with stricter health insurance regulations also had lower SSDI applications.
The Wall Street Journal reports that the Social Security Administration has commissioned an independent review of SSDI, which may focus on the 1,500 administrative law judges who oversee disability appeal cases. A series of articles by the newspaper found large inconsistencies among the judges, with a Houston judge awarding benefits in 13% of his cases while a Tennessee judge awarded benefits 99% of the time. The national average is about 60%, and the Journal reports that Social Security Commissioner Michael Astrue suggested that 100 judges who approve 85% of cases cost the agency an addition $1 billion a year. For more information, visit:
California Healthline reports that a federal judge has temporarily paused the 20% trigger cuts that were supposed to be enacted for California's In-Home Supportive Services, with a hearing now scheduled for January 19. The state has also filed a declaration that 66,000 Californians would be exempted from the cuts, including any children younger than 21. Melinda Bird, an attorney for Disability Rights California, suggested that the exemption was surprising, as was an assertion from the state that county social workers have some authority to restore IHSS hours when recipients show significant need, which she suggests contradicts instructions the counties have received from the state. For more information, visit:
Caregiver Initiative Left Out Of FY 2012 Budget, Payroll Tax Cut In Limbo
Congress recently approved spending bills for Fiscal Year 2012, and the analysis from the National Council on Aging indicates a mixed bag for family caregivers. President Obama's "Caregiving Initiative," originally announced in 2010, would have provided an additional $104.5 million in caregiver supports, but was not included as part of the enacted spending bills for FY 2011. The president re-requested funding for FY 2012 but this funding was also left out of the FY 2012 enacted budget. In the enacted budget for FY 2012, Title IV funding (research in aging) was completely eliminated, and funding for the Alzheimer's Disease Demonstrations were cut 65%. The Senior Community Service Employment Program will remain at the Dept. of Labor with level funding of $449.1 million while LIHEAP is funded at $3.5 billion, a large decrease from the $4.7 billion in FY 2011.
At the time of writing, Congress continues to debate whether or not to extend the 2% payroll tax cut for two months, with House Republicans voting on Tuesday against legislation that passed the Senate by 89 to 10 votes. If the payroll tax holiday isn't extended, the rate will revert to 6.2%, at an estimated annual cost of $1,000 for the average family. The debate on the tax cut extension is highly charged, with over 4,200 reader comments on the Washington Post's article about the impasses on the tax bill. For more information, visit:
NCOA: "Congress Finalizes OAA and Other FY12 Appropriations"
Washington Post: "Pressure mounts on House GOP over payroll tax measure"
Companionship Exemption May Be Removed
The Obama Administration announced last Thursday that the Department of Labor intends to update the companionship exemption in the Fair Labor Standards Act that currently exempts direct care workers from receiving over-time or minimum wage protections. According to the New York Times, Labor Secretary Solis said that Medicare or Medicaid, which pay pays for 75% of the nation's home care costs, would pay between $31 million and $169 million more each year as a result of the change, representing .06% to .29% of federal spending on home care. The Labor Department also suggested that the proposal would "level the playing field" for home health care agencies who would no longer feel pressure to underpay their workers in order to gain a competitive edge. Federal legislation was also introduced earlier this year that would address the companionship exemption. PHI released a report earlier this month with in-depth analysis on the estimated 2.5 million direct care workers in the U.S. who provide care for the elderly and disabled. For more information, visit:
New York Times: "Wage Protection for Home Care Workers"
FCA Legislation Center: Direct Care Job Quality Improvement Act
PHI: "Caring in America: A Guide to America's Home Care Workforce"
Long Term Services And Supports Opportunities In Affordable Care Act
A new technical assistance brief from the Center for Health Care Strategies provides a brief outline of the Money Follows the Person, Balanced Incentives Payment Program, the Community First Choice Option, and the modified Home and Community-Based State Plan option. For each program, the authors outline the budget impact/FMAP opportunity, application process, participant eligibility, care coordination/plans, and data reporting/evaluation. For more information, visit:
CHCS: "Long-Term Services and Supports Opportunities in the Affordable Care Act"
New Reports On Medicaid, Including HCBS Data, Dual Eligibles, And MFP
The Kaiser Commission on Medicaid and the Uninsured released several new reports focused on Medicaid.
The Medicaid Home and Community-Based Services Programs: Data Update provides an update on the number of people served through HCBS programs in 2008, as well as overall trends from 1999-2008. While there is wide variation between states and the three HCBS programs, total Medicaid spending on HCBS increased from 1999 to 2008 by 162%, ($27 billion), an annual average increase of 11%. In 2010, 40 states reported using waiting lists in HCBS while 8 states did not report waiting lists. There were a total of 428,571 people on waiting lists in 2010, (an increase of 17% from 2009) with 268,220 on MR/DD wait lists and 121,149 on Aged/Disabled wait lists, and an overall average wait time of 22 months.
The Financial Alignment Models for Dual Eligibles: An Update provides information on the 37 states and Washington, DC, that are planning to better integrate care for participants who are dually eligible for Medicare and Medicaid. CMS will allow states to select a capitated model (between the state, CMS, and participating health plans), or a managed fee-for-service model (between CMS and the state), or states can use both models. The brief includes a chart explaining the main differences between the two models for: responsible entities, benefits package, provider network adequacy, benefits financing, and shared savings arrangement between CMS and the state.
Money Follows the Person: A 2011 Survey of Transitions, Services, and Costs provides updated data on the 44 states who are participating in this demonstration. Based on a survey completed earlier this year, almost 17,000 individuals have transitioned back into the community, with 46% of the transitions taking place in Ohio, Texas, and Washington. The average MFP participant is 50 years old, took 4.6 months to transition home, and most often moved into an apartment setting. Affordable housing and workforce capacity (especially direct care workers in rural areas) continue to be challenges for the program and states reported a reinstitutionalization rate of 8.3%. A case study of Georgia's MFP program and profiles from 5 participants in Georgia's MFP program were also recently published.
|Canada: Caregiving Leave Legislation Introduced
The Canadian Press reports that legislation expanding a caregiver leave program was introduced earlier this month on the last day of the legislature before the winter break. The legislation would extend an existing program that provides up to 8 weeks of unpaid leave for people caring for a loved one who is dying to also include caring for a family member with a serious injury or illness. The bill would also make the caregiver leave time eligible for employment insurance benefits, a provision currently in place for the family medical leave plan. The political outlook for the bill remains uncertain because the Liberal party would need the support of at least one of the opposition parties in order to get the bill passed. For more information, visit:
The Canadian Press: "Liberals introduce caregivers bill"
2010 National Survey Of Residential Care Facilities
The National Center for Health Statistics at the Center for Disease Control released results from its 2010 survey of the 31,000 residential care facilities (RCF) in the U.S. that provide 971,000 beds nationwide. About half of RCFs were small facilities with 4-10 beds, and about 4 in 10 RCFs had one or more residents who had some or all of their long-term care services paid by Medicaid, while extra large RCFs (100+ beds) were least likely (32%) to serve residents whose services were paid for by Medicaid. Forty-two percent of RCFs are located in the West, while only 8% are located in the Northeast. For more information, visit:
NCHS: "Residential Care Facilities: A Key Sector in the Spectrum of Long-term Care Providers in the United States"
Land Use, Transportation, And Housing Policies That Enable Aging In Place
AARP's Public Policy Institute released a new report that examines how state and local policies can support aging in place. For example, a land use policy that encourages/requires implementing transit-oriented development near (half mile or less) a transit stop can help can enable seniors who are no longer driving to access transit. In 25 states and DC and Puerto Rico, "complete streets" policies are intended to allow all users (including cyclists, walkers, motorcyclists, transit riders), regardless of age or disability, to navigate easily. Naturally Occurring Retirement Communities (NORC) in six states and Communities for a Lifetime in four states are highlighted as models that allow seniors to remain in their homes instead of moving to assisted living or retirement centers. For more information, visit:
AARP PPI: "Aging in Place: A State Survey of Livability Policies and Practices"
The 2012 Aging in America conference, sponsored by the American Society on Aging, will take place March 28-April 1, 2012 in Washington, DC, and the event typically attracts 3,000+ attendees. Family Caregiver Alliance will host several sessions, including "Family Caregivers: Policy Perspectives and Media Musings," as well as a reception to honor the 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. For more information, visit:
Family Caregivers: Policy Perspectives and Media Musings
The 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards: A Reception Honoring the Award Recipients
Aging in America 2012
New Consumer Guide To LGBT Caregiving
Next Steps in Care, in collaboration with SAGE and SAGECAP, recently released a fact sheet that provides practical advice for LGBT caregivers. In addition to a checklist on important legal documents, the guide also explains how hospital discharges happen, and recommends "Do not wait for the social worker on the unit to find you. Instead, find the social worker as soon as you can." If a caregiver and their loved one lives near a state border or spend a lot of time in two states, the guide also recommends obtaining documents for both states since civil union or domestic partner laws may not carry across state lines. For more information, visit:
Next Steps in Care: "A Guide to LGBT Caregiving"
Jane Gross Asks: Are Family Caregivers "Mad As Hell?"
On the New Old Age blog, Jane Gross asks if caregiving has reached a tipping point in this country, with caregivers coming out from behind closed doors and demanding better rights and supports. The majority of caregivers are women, and Gross explains: "Most mysterious is that this is a women's issue. Boomer women changed the world for themselves and those who followed at each stage of life - and now they have fallen silent." Gross highlights several efforts, including the Conversation Project, started by Ellen Goodman, a former journalist. While the project is in its early stages, she has an article in the upcoming "12 Audacious Ideas" in Harvard Business Review. Dr. Joanne Lynn is gathering a roundtable of influential feminists to give a louder voice to caregiving, while Bill Novelli, the former head of AARP, launched the Coalition to Transform Advanced Care. Gross explains: "So why are we not leaning out our windows, in the midst of our own personal lightning storms, shouting, 'I'm mad as hell and I'm not going to take this anymore,' like characters in the movie 'Network'? Denial, I'm told; ours is a death-denying culture. We do the right thing by our parents, and when it's over, we squeeze our eyes shut." FCA blogged earlier this week about three policy "gets" that would better support family caregivers in 2012. For more information, visit:
The New Old Age: "Mad as Hell"
FCA Blog: A Caregiver Policy Wonk's Christmas List
Award For America's "Best Intergenerational Communities"
Generations United and the MetLife Foundation are sponsoring a "Best Intergenerational Community Award" that will be awarded to five communities in 2012. Awardees will be featured in a public recognition event in Washington DC. The application deadline is January 31, 2012, and the application website also feature resources for community leaders interested in making their communities more intergenerational. For more information, visit:
GU: "Best Intergenerational Communities Awards"
'Twas the Night Before Christmas Adapted for Caregivers
FCA's Blog features a new rendition of the Night Before Christmas, as imagined from a caregiver's perspective, one of the verses is featured below:
Her brother was nice, he sometimes called,
Though when she asked him for help he'd often stone-walled,
And, yes, her sister had sent a list of suggestions,
Of 25 books filled with caregiving lessons.
To read the full poem, visit FCA's blog: Caregiver's Carol
Cautionary Tale For Organizations And Employees On Health Data Theft
The New York Times recently published a compelling narrative that details the experience of Micky Tripathi, the president and CEO of the Massachusetts eHealth Collaborative, a non-profit, and his experience after an employee's laptop was stolen from their car. Tripathi explains that the laptop contained unencrypted records for over 13,000 patients and the data breach cost the organization almost $300,000 in legal, private investigation, credit monitoring, and media consulting fees. Health organizations are required to report data breaches of more than 500 people to HHS, and a breach could land an organization on the "Wall of Shame" which includes 380 breaches affecting over 18 million people. Tripathi explained: "Breaches are going to be one of the big challenges as more physicians and hospitals adopt electronic health records... We're entering a brave new world." For more information, visit:
New York Times: "Digital Data on Patients Raises Risk of Breaches"
Clinical Trial Recruiting Stroke Patients
This clinical research study is testing the safety and therapeutic potential of a new stem cell therapy. In animal studies, measurable improvements in use of limbs were shown. Study patients will undergo periodic exams for two years. Study-related costs will be covered. You may be eligible if you:
- suffered an ischemic stroke within the past six months to three years;
- have arm or leg weakness;
- are 18-75 years old;
- have no history of seizures;
- had only one stroke.
Trial locations: Palo Alto, CA and Pittsburgh, PA. For more information, visit:
Lewey Body Dementia Association Survey
The Lewey Body Dementia Association (LBDA) is conducting a survey to assess if there are differences in how grief is experienced by caregivers for individuals with Lewy bodies, Alzheimer's disease, Parkinson's disease with and without dementia, and frontotemporal degeneration. The survey will also assess the well-being and quality of life for caregivers of individuals diagnosed with the neurodegenerative diseases. Internet access is required to participate in the study, and LBDA needs 500 caregivers who are currently providing care for each different disease that is being studied. For more information, or to participate, visit:
Neurodegenerative Disease Caregiver Study
|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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