Family Caregiver Alliance's Policy Digest

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A Newsletter of FCA's National Center on Caregiving

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July 11, 2012

Volume XII, Number 14

I nthis issue section head

State Legislation, Policy & Reports 

  1. Affordable Care Act: Mandate Upheld But Medicaid Expansion Is Voluntary For States  More...
  2. WA: Insurance Company And Insurance Commissioner Disagree About Generic-Only Plan  More...
  3. FL: CNN Hero: Police Officer Started Seniors Intervention Group To Assist Isolated Seniors  More...
  4. MI: Detroit Seniors Die At 131% Higher Rate Than Surrounding Cities; Infrastructure Needs Updating  More...

Federal Legislation, Policy & Reports 

  1. ASPE Background Briefing On Long-Term Care Insurance  More...
  2. OIG Report: CMS Oversight Of HCBS Waivers Needs Improvement  More...
  3. CFPB Report: Reverse Mortgage Market Raises Concerns With More Eligible Boomers  More...
International News 
  1. Australia: Catholic Nun And Former Prisoner Starts Christmas Plans In July For Nursing Home Residents  More...
  2. Canada: Strategies To Stay Working After A Dementia Diagnosis  More...
  3. Canada: Report Highlights "Hidden Population" Of Youth Caregivers, Suggests Better Supports  More...

Research Reports & Journal Articles

  1. Data On Caregiving From Bureau Of Labor Statistics American Time Use Survey  More...
  2. Study: Risk Of Future Falls Predicted Five Years Earlier On Testing Of Executive Function  More...

Conferences & Trainings

  1. Application For 2012 Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards Now Available  More...
  2. Grant Funding Opportunity: Aging And Disability Resource Center Program  More...
  3. Grant Opportunity: Focus On Aging And Disability Networks And Managed Care  More...
  4. Solutions Forum Event Will Focus On Impact Of Mortgage Meltdown On Homeowners Aged 50+  More...
  5. Alzheimer's Advisory Council Meeting On Monday, July 23 More...

Funding, Media & Miscellaneous 

  1. GlaxoSmithKline $3 Billion Settlement Includes Details On Unscrupulous Sales Tactics  More...
  2. Scan Foundation: 10 Resources To Help Prepare For Aging With Dignity And Independence  More...
  3. WSJ: Profile of 41 Year Old Patient As 5th Most Expensive Medicare Patient In 2009 With $2 Million Bill  More...

Research Registry  

  1. Family Caregiver Research Study  More...

If you are interested in having your registry listed, please contact [email protected] 


Connect With FCA

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The U.S. Supreme Court ruled on June 28th that the individual mandate within the Affordable Care Act was constitutional (as a tax), however, it also ruled that the federal government couldn't penalize states for not expanding their Medicaid programs to cover adults up to 133% of the federal poverty line in 2014.  Kaiser Health News noted that in addition to not expanding Medicaid, states will also be allowed to further restrict eligibility for Medicaid for adults.  For states that do expand Medicaid coverage, the federal government will pay 100% of the costs from 2014-2017, and 90% of the costs after 2017.  Critics suggest that states would still incur some costs in expanding Medicaid and seven Republican governors have suggested they probably won't expand the program.  The Washington Post created several charts to demonstrate how a state's decision to expand or not expand coverage would affect people.  For example, if Arkansas opted out of the expansion, people with incomes up to 17% of the federal poverty line would continue receiving Medicaid.  However, people between 17% and 100% of the federal poverty level would be ineligible for Medicaid.  They would also be ineligible for subsidies which are only available for people above 100% of the poverty level.   For more information, visit: 

Kaiser Health News: "States Could Cut Medicaid Rolls In 2014 As A Result Of Court Ruling"  

Kaiser Health News: "States Balk At Expanding Medicaid" 

Washington Post: "What happens if a state opts out of Medicaid, in one chart" 


Kaiser Health News reports that the WA State insurance commissioner, Mike Kreidler, is immersed in a battle with Premera Blue Cross, an insurance company, over a catastrophic-type plan they offer. The plan is the only catastrophic plan in the state that offers drug coverage; however, it only covers generics. When two competing insurers attempted to change their individual plans to only cover generics, Kreidler issued an emergency rule in February banning generic-only coverage.  He suggested that generics for disease like MS, some types of cancer, AIDS, and others are not as effective as brand name drugs.  In response, the two competing insurers dropped their bids, while Premera announced in April that it would eliminate all drug coverage effective August 1st.   A spokesperson for the insurance commissioner suggested this was a move to "get rid of high-cost patients" while a Premera spokesperson said that covering all drugs would require increasing monthly premiums by hundreds of dollars.  In 2014, all health plans will be required to cover all drug benefits (generic and brand-name) as a result of the Affordable Care Act.  For more information, visit:

Zach Hudson, a police officer in Lake Mary, Florida, was raised by his grandparents, and a recent profile of him by CNN showed how he is repaying the care they provided for him.  During a home visit with a mother who was 90 and her daughter who was 70, Hudson began thinking about how to better serve seniors.  The two women would alternate between paying for medicine, food, or their electric bill each month.  Hudson formed the "Seniors Intervention Group" in 2009 and the group has assisted almost 1,000 seniors in Seminole County since its founding.   Volunteers have assisted with food, money, transportation, and house maintenance.   Hudson explained: "If you have a crime, then (police) can handle it. If you have a fire, the fire department can handle it. But what do you do when somebody can't pay their electric bill and, as a result, that won't run their oxygen pump? How do you deal with that?"  The group offers both individualized services as well as monthly "operations" such as yard cleanups.   A Vietnam veteran explained that Hudson's group helped repaired his bathroom floor after his wheelchair wore a hole in it and installed a ramp for his front door, both of which helped him keep his independence.   For more information, or to nominate a CNN Hero, visit:


The Detroit Free Press reports on a report recently released by the Detroit Area Agency on Aging that found that seniors in Detroit, Highland Park, Hamtramck, and the Gross Pointes die at a rate that is 131% higher than seniors in other cities in Michigan.  Novella Walker-Page, who is 60 and was an RN for 26 years, suffers from several health conditions, and is also a caregiver for her 95-year old mother.  She is profiled as a typical "new elderly" who are aged 50-59, but whose health age is closer to 60-74.  Another nurse, aged 57, and with multiple chronic conditions, receives help from her husband (aged 80) to ascend and descend the five steps on their front porch while the couple sits on a waiting list for home improvements.  Research released earlier from a task-force focused on long-term care found that Detroit's infrastructure to serve seniors is shrinking.  While Detroit had 50 nursing homes at one point, it has since lost 20 homes, with 16 of them closing in the past 13 years.  Nineteen nursing homes must upgrade or install sprinkler systems by next year in order to continue receiving government funding.  The authors cite a number of challenges for the city's long-term care infrastructure, including losing an average of one nursing home a year; a high dependence on Medicaid reimbursements; and an image problem leading to a loss of potential residents to institutions outside of Detroit.  Recommendations include identifying new capital for new facilities; more HCBS options; more training for direct care workers; better Medicaid reimbursements; and stronger regulation of guardianship services provided by individuals or companies.  For more information, visit:
Detroit Long Term Care System Change Task Force: "Transforming Long Term Care in Detroit"                                                                                                                            


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ASPE Background Briefing On Long-Term Care Insurance


A recent background briefing from the HHS Office of the Assistant Secretary for Planning and Education (ASPE) provides a broad overview of long-term care insurance.  ASPE is one of three federal offices that authored a report in October 2011 on efforts to model the CLASS voluntary long-term care insurance program that was included in the Affordable Care Act but ultimately "paused" last October.  The overview cites research on a number of areas related to the need for long-term care, private consumption of long-term care insurance, comparisons to countries that provide government-sponsored LTC insurance programs, and marketing of the need for long-term care.  Cost of premiums, distrust in insurers, lack of knowledge about the need for long-term care, and concerns about premium increases continue to serve as obstacles for consumers purchasing the product. The authors note that Medicaid is an imperfect substitute for private long-term care insurance and cite a recent survey that 60% of assisted living facilities do not serve Medicaid beneficiaries.  ASPE is currently conducting focus groups on how adults make decisions related to long-term care planning. The report does not address the use of long-term care riders attached to annuities or life insurance policies.   For more information, visit:

ASPE: "Background Briefing on Long Term Care Insurance" 

FCA: "CLASS Round-Up Page"  


OIG Report: CMS Oversight Of HCBS Waivers Needs Improvement


A recent report from the Office of the Inspector General at HHS analyzed the extent to which CMS regulates quality in HCBS waivers. The authors reviewed documents for 33 waiver programs administered in 25 states and also conducted structured interviews with staff from 10 CMS regional offices. States are required to report on "assurances" in order to operate HCBS waivers, including 1) a system to monitor the adequacy of service plans; 2) qualifications of providers; and 3) the health and welfare of beneficiaries. Six states did not have adequate systems to monitor service plans, with one state completely lacking a method to determine if services were provided according to a beneficiaries' service plan, and one CMS official noted: "Some States really have no monitoring systems [for service plans] at all." 

Five states did not have adequate checks on providers, with two states allowing caregivers to provide services prior to the state receiving results from a criminal background check. Four states were not compliant with the health and welfare assurance, with two states lacking a system altogether to track alleged instances of abuse, neglect, or exploitation. The authors note that despite seven states not meeting one or more of the assurance (with an official noting that one state had a "pervasive problem" with its approach to quality management/improvement in all of its waiver programs), all of their waivers were renewed, and two of the states had not adequately addressed the problems almost three years later. 

Of the seven states not meeting assurances, three were not required by CMS to develop a corrective action plan. In response, CMS officials said they have relatively few tools to assure compliance, and also explained that terminating a waiver would leave the most vulnerable at-risk. Suggestions for improvement are provided, including CMS publicly posting a state's quality reviews, which CMS said it would "explore." The states in this report are not identified. A future report from the OIG will analyze HCBS provided in assisted living facilities. For more information, visit:

OIG: "Oversight of Quality of Care in Medicaid Home and Community-Based Services Waiver Programs." 


CFPB Report: Reverse Mortgage Market Raises Concerns With More Eligible Boomers

The Consumer Financial Protection Bureau (CFPB) recently released a report on reverse mortgages and how the industry is changing.  While only two to three percent of eligible homeowners currently have a reverse mortgage, the 32 million baby boomers who are homeowners have a median home equity of $108,000 and are potential customers for this product.  This report finds that reverse mortgage borrowers are increasingly younger, with almost half under the age of 70 in FY 2011, and 73% are taking all or most of their money upfront, a 30% increase since 2008.  Both changes could lead to homeowners with little to no resources in their later years in life.  Taking out lump-sums could also make seniors easier targets for scams or fraud.  Foreclosure is also a risk: as of February this year, 9.4% of homeowners with a reverse mortgage are at risk of foreclosure due to nonpayment of taxes and insurance.  While housing counseling is required to obtain a reverse mortgage, funding for these programs has been threatened in the past few years, and the quality of counseling varies.  Mother Jones noted in 2010 that a reverse mortgage company that hired former Senator Fred Thompson as a spokesperson has been targeted by six state regulators for deceptive marketing.  The CFPB has also published a notice and request for information.  For more information or to answer the request for information, visit:


CFPB Blog: "Understanding reverse mortgages"

Mother Jones: "Law & Order: Mortgage Victims Unit (Starring Fred Thompson)"  



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Australia: Catholic Nun And Former Prisoner Starts Christmas Plans In July For Nursing Home Residents

The Sydney Morning Herald recently profiled Sister Myree Harris, a Catholic nun in Sydney who started  "The Christmas Project" in the 1990's to address an epidemic of loneliness among nursing home residents in the city.  Sister Myree lives in a home in the Gethsemane Community with four people who have mental illness and the basement of the home acts as a storage area for Christmas supplies that begin arriving in July.   Vic Hitchcock, a former prisoner, manages much of the operation.  After leaving jail, the first charity he approached rejected him because of his record, whereas Sister Myree gave him the keys to the house.  The program was originally started for the mentally ill living in Sydney's boarding houses and was expanded to aged care facilities as well. She explains to the paper, ''People lead busy lives, some leave their parents and go away, and in an affluent society maybe visiting old people in gloomy nursing homes is not part of the agenda."  In December, 900 residents will receive gift packs and 800 will receive a Christmas card.  For more information, visit:

Sydney Morning Herald: "Christmas is coming for the old whose families have abandoned them in nursing homes" 



Canada: Strategies To Stay Working After A Dementia Diagnosis


A recent article in the Globe and Mail addresses the question of how long employees can continue working after receiving a diagnosis of dementia and provides suggestions for employers and employees.  There are 500,000 Canadians who currently have dementia and the disease cost Canadian employers an estimated $3 billion in lost productivity in 2008.  With earlier diagnoses of dementia, before symptoms have begun appearing, employers may have more employees who want to stay on the job after a diagnosis. A Toronto employment lawyer explains that under Canadian law, employers are required to accommodate an employee with dementia until it would cause "undue hardship" on the company. Possible accommodations include adjusting work hours, assigning a work buddy, increasing organization strategies for the employee, and possibly changing roles.  For more information, visit:


The Globe and Mail: "Staying on the job, when dementia hits"


Canada: Report Highlights "Hidden Population" Of Youth Caregivers, Suggests Better Supports


A recent report from the Vanier Institute of the Family reviews research on youth caregiving, highlights challenges unique to this population, and suggests policy/program solutions for Canada. Citing research that 12% of youth (aged 12-17) in Vancouver identified as caregivers, the authors explain that this is often a "hidden population."  In this survey, almost 40% of youth were caring for a parent, 36% were caring for a grandparent, 7% were caring for an aunt or uncle, and 16% were caring for another family member.  The authors explain that some advocates have cautioned against language suggesting that youth carers (caregivers) are "parenting their parents," because it may describe the adult as helpless, and "can undermine the already tenuous position many parents with disabilities find themselves in with regard to how other people perceive their parenting role and legitimacy."  The authors suggest looking to the United Kingdom, where young carers are legally recognized and entitled to regular assessments of their own ability to provide care within the larger care plan.   Legislation enacted in the UK in 2009 also prompted the Directors of Adult and Children Social Services to create a series of directives for health care professionals to follow with nine points related to carer assessments and supports.  For more information, visit:  


Vanier Institute: "Young Carers in Canada- The Hidden Costs and Benefits of Young Caregiving" 

The Star "Young carers looking after ailing parents are often overlooked and need support" 



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Data On Caregiving From Bureau Of Labor Statistics American Time Use Survey


The New Old Age blog reports on new data from the 2011 American Time Use Survey, which suggests that in the past three months, 39.8 million people (aged 15 and older) provided unpaid care.  The survey began in 2003, includes 12,5000 respondents who are asked how they spent their previous 24 hours, and starting last year, respondents were also asked about caregiving.   Almost a third of respondents reported taking care of two or more older people, and 23% also had a minor child in their households.  The results also suggest that men caregivers are growing in numbers. The average time spent providing care was three hours, though women spend about an hour more than men.  For more information, visit:

New York Times: "New Numbers on Elder Care" 

Bureau of Labor Statistics: "American Time Use Survey: 2011 Results" 


Study: Risk Of Future Falls Predicted Five Years Earlier On Testing Of Executive Function

A recent study featured on PlosONE suggests that the potential for falls may be predicted by executive function and attention tests.  The study followed 256 community-living older adults who did not have dementia and who had good mobility.  At the beginning of the study, participants answered a computerized set of questions, including an index of executive function, attention, a closely related construct, and other cognitive domains.  The participant's gait was also assessed during single and dual task conditions.  Data on falls was collected on a monthly calendar.  Using regression analysis, the authors find that the executive function index, attention index, and dual tasking gait variability were associated with future fall risk.  Participants with the lowest executive function scores were more likely to fall sooner and to experience multiple falls during the five and a half years.  The authors suggest that screening for executive function could enhance fall risk assessment, and treatment for executive function could reduce the risk of falls.  For more information, visit:


PlOsONE: "Executive Function and Falls in Older Adults: New Findings from a Five-Year Prospective Study Link Fall Risk to Cognition" (article is free)   





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With continuing support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance (FCA) is pleased to oversee the annual Caregiving Legacy Awards program now in its fifth year. The program stimulates innovation in the field of Alzheimer's disease caregiving by recognizing and rewarding those efforts which lead the way in addressing the needs of Alzheimer's disease caregivers.  The deadline to apply is August 17, 2012.  For more information, visit:


Award Application

FCA Blog Post About 2011 Award Recipients and Award Reception 




The Department of Health and Human Services has announced the release of $25 million in funding from the Affordable Care Act to improve Aging and Disability Resource Centers.  There are two grants available, a three year grant (Enhanced ADRC Options Counseling Program) and a one year program expansion supplemental grant.  The grants are intended to help states strengthen and expand services and supports that enable community living for seniors and people with disabilities. For more information, visit:


CMCS Informational Bulletin 



Grant Opportunity: Focus On Aging And Disability Networks And Managed Care


A recently announced grant opportunity will focus on the emergence of managed care in the long-term services and supports systems and how the aging and disability networks can play strong leadership roles.  The funding announcement is for one award that includes two primary tasks.  The first task is to design and implement training and technical assistance for aging and disability networks on issues related to managed long term services and supports.  The second task is to assess the aging and disability networks' involvement in managed long term services and supports.   The Administration for Community Living "anticipates that the successful application for this announcement will represent a collaborative effort of organizations with diverse areas of expertise and target populations including older adults, people with physical disabilities, people with intellectual and developmental disabilities."  Applications for the $250,000 grant must be submitted by August 1, 2012.  For more information, visit:


Building the Business Capacity of Aging and Disability Community-Based Networks for Managed Long-Term Services and Supports 



Solutions Forum Event Will Focus On Impact Of Mortgage Meltdown On Homeowners Aged 50+


An AARP PPI Solutions Forum on Monday, July 23, from 9:00AM to 12:00PM in Washington DC at the Columbus Club in Union Station will include the release of a study focusing on how the mortgage crisis has affected homeowners over the age of 50.  A panel discussion will include representatives from the National Council of La Raza, the National Community Reinvestment Coalition, the U.S. Department of Justice, the Heritage Foundation, and the Federal Reserve Bank of Boston.  Jane Bryant Quinn, a financial columnist and author will moderate a panel discussion.  For more information, contact Cherri Thompson at [email protected]



Alzheimer's Advisory Council Meeting On Monday, July 23


The next meeting for the Advisory Council on Alzheimer's Research, Care, and Services will be on Monday, July 23, from 9:00-4:30 at the US Department of Health and Human Services in Washington DC.  The Council will discuss the implementation of the National Plan to address the disease and the day will include a public session for attendees.  Members of the public who would like to attend are asked to send an email to [email protected] with "July 23 meeting attendance" in the subject line by July 13 so that their names can be added to the list of expected attendees.   In lieu of oral comments, comments can be sent to [email protected].  The meeting will also be streamed live on   For more information, visit:


National Alzheimer's Project Act 




Funding, Media & Miscellaneous banner

GlaxoSmithKline $3 Billion Settlement Includes Details On Unscrupulous Sales Tactics


Kaiser Health News reports that GlaxoSmithKline (GSK) recently agreed to pay a $3 billion fine as part of a settlement with federal prosecutors over allegations that the company marketed a number of drugs for unapproved uses.  Among the more appalling details from the settlement were that Dr. Drew (Loveline, Celebrity Rehab with Dr. Drew) was paid $275,000 to promote Wellbutrin "in settings where it did not appear that Dr. Pinsky was speaking for" GSK.   Wellbutrin was also referred to as the "happy, horny, skinny pill" by sales representatives.  The company also flew psychiatrists to resorts in Puerto Rico and Palm Springs to promote Paxil for children (an unapproved use), and an internal memo suggested these trips had a "significant impact on market share in the months after attendance."  Kaiser Health News notes that future payments to doctors will have to be disclosed because of the Physician Payment Sunshine Act which was included in the Affordable Care Act. The Pew Prescription Project, which advocates for implementation of this Act, estimates the value of direct marketing to medical professionals by the pharmaceutical industry at $20-$57 billion annually. For more information, visit:

Kaiser Health News: "Doc Payments Show Underbelly Of Pill Marketing"


Scan Foundation: 10 Resources To Help Prepare For Aging With Dignity And Independence


The Scan Foundation recently released a brief with a number of helpful resources for people who may need assistance with activities of daily living.  The brief includes links, numbers and contact information for programs including Area Agencies on Aging, Aging and Disability Resource Centers, the ElderCare Locator, Benefits Checkup and FCA's Family Care Navigator.   Additional resources include websites to compare quality of Medicare certified home health care agencies and nursing homes.  For more information, visit:


Scan Foundation: "10 Resources to Help Prepare for Aging with Dignity and Independence"


WSJ: Profile of 41 Year Old Patient As 5th Most Expensive Medicare Patient In 2009 With $2 Million Bill


This past weekend, the Wall Street Journal profiled Scott Crawford, a 41-year old whose medical care was estimated to be the fifth most expensive for Medicare in 2009. Crawford's care and treatment is profiled within the context of high Medicare costs being attributed to a small amount of the population at the end of their life. The Journal's analysis found that for the top 10% of Medicare beneficiaries who received hospital care in 2009, their care accounted for 64% of Medicare's spending on hospital care. The CBO has projected that Medicare spending will grow an average of 5.7% per year through 2022. Despite empirical evidence about the high amount of spending on end-of-life care, especially the last six months of life, the Journal notes that efforts to address this issue were killed by the term "death panel."

Crawford's doctor wrote an Op-Ed in the middle of the "death panel" debate in 2009, in which he cited Crawford's $1.5 million medical tab (without naming Crawford) and suggested that the country needed to confront the realities of the high costs and sometimes futile efforts at end-of-life medical care.

The in-depth article captures the human element of these difficult decisions, with Crawford's parents explaining that they had high hopes that his various treatments would work and would save him. Meanwhile, some of the doctors and nurses who cared for Crawford expressed concern about his ongoing treatments, but in two meetings with the doctors about whether or not to continue care, his family felt that the hospital was primarily concerned about the cost of care, especially since he had used up what Medicare would cover. In December 2009, sepsis overwhelmed Mr. Crawford's system and his father requested to turn off the machines that had been keeping him alive. His father explained, "I always got up and went to the hospital every morning with the hope that he had improved," he said. "I just felt that, up until the last day," he said, "they were going to save him." For more information, visit:


WSJ: "The Crushing Cost of Care" 




Research Registry section head


Family Caregiver Research Study


If you are a family member currently caring for an adult patient who due to his/her medical condition, illness, or advanced age needs help with daily living activities, or have been involved in family caregiving in the last five years, you are invited to participate in a psychological study and share your perceptions and experiences. Participants will be asked to complete a demographic profile and a series of brief questionnaires online (approx. 20-30 min). A good reading knowledge of English is required.  This study is being conducted by researcher Veronica Semenova, a doctoral candidate in the Ph.D. Health Psychology program at Walden University.  Please click here to participate.




To find caregiver support services in your state, visit FCA's Family Care Navigator

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The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, contact [email protected] or visit the Family Caregiver Alliance website at

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