Family Caregiver Alliance's Policy Digest

Policy Digest Newsletter
A Newsletter of FCA's National Center on Caregiving

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June 13, 2012

Volume XII, Number 12

I nthis issue section head

State Legislation, Policy & Reports 

  1. NY: Report: Financing Long-Term Care: Few Policy Levers Remain  More...
  2. OH: More Older Drivers, But Fewer At Fault When Accidents Occur  More...
  3. IL: Advocates Unhappy With Nurse Staffing Requirements In Nursing Home Legislation More...
  4. PA: AAA's Criticize Changes To Medicaid Waiver  More...
  5. CA: State Budget Due This Friday  More...

Federal Legislation, Policy & Reports 

  1. US Supreme Court Ruling On Affordable Care Act Later This Month  More...
  2. GAO Report: VA Pension Program Allows For Transferring Assets Before Applying  More...
  3. CMS Seeking Public Comment For State Dual Proposals  More...
International News 
  1. UK: Proposal Would Create Legal Right For Caregivers To Respite, Training  More...
  2. UK: Red Cross Report Suggests Home Care Saves 10,430 More...
  3. Canada: New Report On Home And Community Care More...

Research Reports & Journal Articles

  1. AHRQ: Report On Assessing Risk And Preventive Interventions For Pressure Ulcers  More...
  2. AHRQ: Guide to Patient and Family Engagement: Environmental Scan Report  More...

Conferences & Trainings

  1. Webinar: State Preparation For Medicaid Growth June 20  More...
  2. Webinar: Shelter Volunteer Caregiving Training, June 25  More...
  3. Early Bird Registration Extended For Short Break Association 2012 Respite Conference  More...

Funding, Media & Miscellaneous 

  1. Article: "5 Things Never to Say to Your Sibling the Caregiver"  More...
  2. Three Federal Grant Opportunities: CAP, ADRC, And Aging Network More...
  3. Report: 53% of Americans Aged 65 And Older Use Internet Or Email More...
  4. New Guide From Next Step In Care  More...

Research Registry   


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A new report from the Medicaid Institute at the United Hospital Fund analyzes the challenge of paying for long-term care broadly in the U.S. for consumers and government and what policy levers are available in New York State to address these challenges.  Using the example of a person diagnosed with Alzheimer's, and the average lifespan after an Alzheimer's diagnosis of 8-10 years, the authors suggest a cost of more than $600,000 for eight years of home care (for 10 hours a day, at $22 an hour).  New York, Connecticut, and Florida are the only three states with a spousal refusal policy, in which the "well spouse" can avoid having their assets counted as part of their spouse's application for Medicaid funded long-term care.  However, the "well-spouse" could be sued by a New York local government to recover these costs.  The report concludes that Medicaid is not only the "payer of last resort," but is also the primary payer.  "But this role says less about Medicaid itself than about the absence of a coherent financing mechanism, public or private, that pools risk and prevents unpredictable and catastrophic long-term care costs from sinking middle-class and working families into poverty." For more information, visit:

UHF Medicaid Institute: "Financing Long-Term Care: New York's Limited Options and Medicaid's Vast Challenge" 


The Middletown Journal reports that while the number of older adults grew 24% from 2000 to 2010, less than two percent of drivers aged 75 or older in Butler County who were in accidents in 2011 were found to be at fault.  In comparison, drivers aged 16-40 were found to be at fault about 5.7% of the time.  Professor Kate de Medieros, a professor of gerontology, explains that a decline in "attentional memory" is one of the biggest challenges for older drivers, and suggests that left turns can be difficult because they require processing multiple pieces of information, making a judgment, and executing the turn.  Ohio requires all drivers to renew their licenses every four years, and there are no special requirements for older drivers.  In comparison, Rhode Island requires adults aged 75 or older to renew every two years.  During the first five months of 2011, Ohio officials investigated and closed 52 complaints about elderly drivers, but did not revoke any of the licenses.  An older driver interviewed for the story pointed out that many younger drivers are distracted by their cell phones.  For more information, visit:

The State Journal Register reports that elder advocates are unhappy with the outcome of negotiations on recent legislation (SB 2840) that mandates nursing home staffing levels.  Illinois passed a nursing reform law in 2010 with gradual increases in the number of nurses and personal care that are required for residents. The Illinois Department of Public Health had proposed that at least 20% of the nurses would have to be registered nurses, instead of a combination of RN's and lesser-trained nurses.  Advocates and some state senators supported this provision, however, the ultimate legislation only included a requirement that 10% of the nurses are RN's.  State Senator Jacqueline Collins, who supported the 20% RN requirement, criticized the final provision and suggested that a low number of RN's is especially problematic "at Chicago-area nursing homes in which a majority of residents are black."  For more information, visit:

The Pennsylvania Department of Public Welfare will enact changes for the state's Aging Waiver program on July 1.  The changes will affect who provides care management and how those services are compensated.  Joanne Kline, the executive director of Montgomery County Aging and Adult (MCAAS), explained that under the original waiver agreement, her agency would have received $1.8 million for care management, $885,000 for assessments, and $90,000 for nursing home transitions.  However, under the changes, the $1.8 million care management payment was eliminated.  Instead, the agency will receive $2,214 per year for each client.  With 598 clients, this reduces the agency's state reimbursement to $1.3 million.  A representative from the Department of Public Welfare explained that the changes are intended to give consumers more choice in who manages their care.  The Executive Director of the PA Association of Area Agencies on Aging suggested that the plan to reimburse the agencies after services are provided could create cash-flow issues, and said the association is pursuing legal options.  For more information, visit:
Newsworks: "Agency on Aging says Pa. budget change will force some seniors into nursing homes"                                                                                                                            


California Democratic leaders are set to release their version of the state budget this Friday.  Family caregivers and their advocates are watching the budget process closely because Governor Brown has proposed eliminating the state-wide Caregiver Resource Centers in an earlier budget.  Almost 4,000 caregivers from across the state have signed a petition against Brown's proposed cuts, and both the Assembly and the Senate rejected the cuts, citing a contradiction in eliminating support for caregivers while also shifting the state towards more home and community-based long-term care.  For more information, visit:

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US Supreme Court Ruling On Affordable Care Act Later This Month


The Supreme Court is expected to rule later this month on the constitutionality of the Affordable Care Act.  A health consulting firm has created a "Health Reform Bracket," similar to NCAA brackets, with potential outcomes based on the Supreme Court decision and the upcoming elections in November.  The suggested outcomes in the Health Reform Bracket also highlight what's been referred to as "Taxmageddon," when tax breaks enacted in 2001 (and extended in 2010) expire, automatic cuts to domestic spending begin, and the payroll tax holiday expires.  According to the May Kaiser Health Tracking Poll, the cost of healthcare remains a significant concern for Americans.  For those with health insurance, 23% reported that they or a family member had problems paying for medical bills in the past year, and this number increases to 47% for the uninsured.  UnitedHealth Group and Humana have both announced that regardless of the Court's decision, the companies will continue some popular aspects of the Affordable Care Act, including coverage for children on their parent's policies.  For more information, visit:

Health Reform Bracket 

Kaiser May Health Tracking Poll 

Washington Post: "CBO: Taxmageddon would bring tax pain but debt relief" 

Forbes: "United, Humana In Parade Of Plans To Keep Benefits If SCOTUS Strikes Down Obamacare" 


GAO Report: VA Pension Program Allows For Transferring Assets Before Applying


A new GAO report sheds light on the application process for the VA pension program and possible changes to the program to make the financial application process more like Medicaid and to safeguard veterans from poor financial planning.  While the VA pension is means-tested, there isn't a rule on transferring assets prior to applying, and the GAO cites a case where a claimant transferred over a million dollars three months before successfully applying for the VA pension.  A federal hearing was held on the report's findings on June 6, 2012.   


As part of research for the report, a GAO staff member posed as the son of a veteran and contacted a sample of 25 organization that market financial and estate planning services.  Nineteen of the organizations suggested a person could transfer assets prior to applying for the VA pension, and one of the congressional witnesses was from one of the 19 firms.  At 107 minutes into the hearing, Senator Ron Wyden (D-OR) questioned the head of this firm, including questions about the founder of the company (who is currently incarcerated for fraud), the firm's high profits from annuities, and the company's marketing to assisted living facilities. 

Witnesses explained that poor financial advice during the application process could result in money being tied up in costly/unavailable annuities, claimants incorrectly assuming they will qualify for the Aid and Attendance benefit, and possible implications for qualifying for Medicaid.  Recommendations include establishing look-back and penalty periods, modification of application forms to allow people to report more financial information, verification of financial information during the application process, and clarifying what types of assets should be counted.  A representative from the VA explained that the VA began rule-making to address some of the issues in March. For more information, visit:

GAO: "Improvements Needed to Ensure Only Qualified Veterans and Survivors Receive Benefits" 

US Senate Special Committee on Aging: "Pension Poachers: Preventing Fraud and Protecting America's Veterans"  


CMS Seeking Public Comment For State Dual Proposals

CMS is accepting public comment on state proposals to change how care is provided and financed for people who are dually eligible for Medicare and Medicaid.  After a state submits a proposal to CMS, it becomes publicly available on the Integrated Care Resource Center website, and the general public has 30 days to submit comments.  There are currently 17 states with open comment periods on their proposed plans. For more information, visit:


Integrated Care Resource Center   



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UK: Proposal Would Create Legal Right For Caregivers To Respite, Training

BBC News UK reports that family caregivers in the United Kingdom are set to gain new legal rights related to their caregiving roles.  The Care Services Minister, Paul Burstow, said this would make "a huge difference," and suggested that this will ensure that neither the National Health Service or local councils will overlook family caregivers.  He suggested that possibilities include respite breaks, or even access to computers to help keep in touch with friends and family while also caregiving.  A BBC political correspondent explained that the funding source for the proposal remains unclear.  For more information, visit:

BBC News UK: "Carers of relatives in England to get legal rights" 



UK: Red Cross Report Suggests Home Care Saves 10,430


The Telegraph reports that the Red Cross, which provides home care (social care) to almost 240,000 people in Britain, recently commissioned a report to analyze the costs of cutting funding for social care programs.  The report suggests a "false economy" of reducing funding for social care, because of greater costs due to hospitalization or nursing home care.  The report analyzed savings to the National Health Service and to social services as a result of receiving Red Cross services, and, based on a cross section of people with different medical conditions, the resulting savings averaged 10,430.  There is an estimated  1 billion shortfall in funding for social care, and 82% of the general public and 92% of people with recent hospital stays thought that support for people with fewer needs is already being cut.  Another study that polled general practitioners found that 88% thoughts patients are being put at risk because of a lack of social care support. For more information, visit:


Telegraph: "Red Cross warns of 'false economy' of 'dangerous' social care cuts"
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Canada: New Report On Home And Community Care


A new report by the Conference Board of Canada analyzes the home care industry in Canada.  In 2010, spending on home care ranged from $8.9 billion to $10.5 billion, representing between 4.6 and 5.5% of total health spending in Canada.  The authors estimate that 22-27% of this spending is from private sources.  Citing 2007 research, the authors suggest that absenteeism due to caregiving cost Canadian businesses over $1.2 billion.  The authors conclude that better data collection, including the costs faced by informal family caregivers would better help Canada to meet a need that will grow in the coming years.  For more information, visit: 


The Conference Board of Canada: "Home and Community Care in Canada: An Economic Footprint" (registration is required to download free report) 



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AHRQ: Report On Assessing Risk And Preventive Interventions For Pressure Ulcers


A draft report of a comparative effectiveness review from AHRQ is now available for comment until July 9, 2012.  The review looks at evidence on risk assessment scales that identify people at higher risk for pressure ulcers as well as preventive interventions to decrease incidence or severity of pressure ulcers.  A separate report is focused on effectiveness of interventions to treat pressure ulcers.  A total of 105 studies were included in the review, and the authors conclude that while risk assessments can help identify patients at higher risk for pressure ulcers, additional research is needed to understand how the tools compare to clinical judgment.  For more information or to provide input, visit: 

AHRQ: "Pressure Ulcer Risk Assessment and Prevention: A Comparative Effectiveness Review" 

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AHRQ: Guide to Patient and Family Engagement: Environmental Scan Report

An Environmental Scan Report from AHRQ focuses on patient and family engagement in hospitals.  The report is part of a larger AHRQ report that will focus on patient and family engagement. The report addresses differences in how patients and family caregivers view engagement as compared to health care providers.   The authors note "Most of the literature on patient and family engagement roles focuses on what patients could do (or what researchers and policymakers want patients to do) instead of discussing what behaviors patients and family members currently engage in or would be willing to engage in during clinical encounters."  The authors also note that patients are more likely to engage on specific questions about their care and less likely to engage when it requires confronting healthcare providers, for example, by asking them to wash their hands.  The authors identify a number of gaps between existing tools/materials, including a lack of focus on the patient/family experience (as compared to health professional/hospital views); system-level interventions lacking individual level tools; and having complimentary tools in interventions so that if an intervention suggests an action to patients/families (like washing hands), the health care provider is also prepared.  For more information, visit:


AHRQ: "Guide to Patient and Family Engagement: Final Environmental Scan Report"   




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A webinar on Wednesday, June 20, from 2:30-4:00PM (EST) will focus on the additional 16 million Americans who will be covered by Medicaid in 2019.  The webinar, sponsored by the National Academy for State Health Policy, will include three state  Medicaid officials from Washington, Rhode Island, and New Mexico.  Presenters will address their efforts to prepare for the growth in Medicaid, and will focus on how states have estimated the number of people enrolling, how existing eligibility may change, and how Medicaid will integrate with the state exchanges.  For more information, or to register, visit:


NASHP: "States Prepare for Medicaid's Growth Spurt"




The National Research and Training Center for Personal Assistance Services (PAS Center) is sponsoring a webinar on Monday, June 25, from 2:00-3:00pm (EST). The webinar will focus on a project that recruits and trains shelter volunteer to provide personal assistance services to people who need this type of assistance when they are staying in a shelter after a disaster.  There is no pre-registration for the webinar, though the organizers recommend visiting a few minutes beforehand to allow the software to load.  For more information visit:


PAS: "Promising Practices in PAS in Emergencies: Shelter Volunteer Caregiver Training" 



Early Bird Registration Extended For Short Break Association 2012 Respite Conference


The theme for this year's conference, held in Toronto from October 10-12 is "Respite is Key." Themes during the conference include: "Opening the Door to the Community," "The Key to Strengthening Families," "Unlocking Resources," and "Treasures Found."  Early bird registration was extended to Friday, June 15, for more information, or to register, visit:


Short Break Association 2012 Respite Conference 




Funding, Media & Miscellaneous banner

Article: "5 Things Never to Say to Your Sibling the Caregiver"


A recent article on LifeGoesStrong addresses some of the many issues that can arise when one sibling is a caregiver and the other is not.  The author explains that five statements are especially frustrating for a caregiver to hear, including, "I wish I could help," "I don't think mom is that bad," and "call me before you make a decision like that again."  Strategies to support the caregiver are also included in the article.  FCA also has resources focused on this topic that may be useful for families.  For more information, visit:

LifeGoesStrong: "5 Things Never to Say to Your Sibling the Caregiver"

FCA Fact Sheet: "Caregiving With Your Siblings" 

FCA Fact Sheet: "Holding A Family Meeting" 

FCA Webinar: "Family Caregiving: Work With Your Siblings To Keep Your Life, Family, and Sanity Intact! (with Francine Russo)" 

FCA Blog: "Caregiving From Afar" 


Three Federal Grant Opportunities: CAP, ADRC, And Aging Network


A number of federal grant opportunities were recently announced.  First, funding for the state-based Consumer Assistance Program was announced, all states (including current grantees) are eligible to apply.  Second, funding for Aging and Disability Resource Centers was also announced, with one and three-year grants.  Third, the Administration on Aging announced a funding opportunity to focus on the program design and service delivery of the Aging Network.  For more information, visit:


Consumer Assistance Program Grant Announcement

Aging and Disability Resource Center Program 

Aging Network Capacity  


Report: 53% of Americans Aged 65 And Older Use Internet Or Email


A new survey from the Pew Internet and American Life Project found a new milestone has been reached with more than half of seniors going online.  One-third of internet users age 65 and older use social networking sites, while 18% use them on a typical day.  Email continues to be the most important reason for going online, with 86% of internet users age 65 and older using email, and 48% using email on a typical day.  Cell phone ownership has also increased, with 69% of adults age 65 and older reporting that they own a cell phone.  For more information, visit:


Pew Internet and American Life Project: "Older adults and internet use" 



New Guide From Next Step In Care


Next Step In Care released a new guide for consumers focused on hospitalists, which are full-time hospital doctors. The guide explains the role of the hospitalists and provides eight suggestions for caregivers on working with hospitalists and also includes discharge planning suggestions. All Next Step In Care guides are available in English, Spanish, Chinese, and Russian.  For more information, visit:


Next Step In Care: "What Is a Hospitalist? A Guide for Family Caregivers"  




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

2012 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 or visit the Family Caregiver Alliance website at

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