State Legislation, Policy & Reports
New Jersey: Governor Signs Bill to Create Prescription Cost-Comparison Web Site
New Jersey Gov. Jon Corzine (D) recently signed a bill that will allow residents to compare prescription drug prices at various pharmacies through a state web site or a toll-free telephone number, similar to programs in Florida, Illinois, Maryland and New York. Consumers and their family caregivers will be able to comparison shop by entering their ZIP codes and name of the prescription drug. For more information, visit:
New Jersey Governor Press Release
Fact Sheets Summarize Medicaid Program Changes in KY and VT
States are moving forward with changes to their Medicaid programs using new options under the Deficit Reduction Act (DRA) of 2005 and existing Medicaid waiver rules. The Kaiser Commission on Medicaid and the Uninsured has released fact sheets examining how Kentucky and Vermont are using DRA to change their Medicaid programs. Kentucky is imposing new cost sharing requirements with a redesign of their Medicaid long-term care program. The goal of the redesign is equal access to institutional and home and community-based services. Vermont is using a Section 1115 waiver in its Medicaid long-term care program to better support caregiving families. For more information, visit:
State Medicaid Fact Sheets
Federal Legislation, Policy & Reports
President Bush Signs Executive Order to Increase Health Care Transparency
On August 22, President Bush signed an Executive Order to promote quality and efficient delivery of health care programs, administered or sponsored by the Federal Government, through the use of health information technology, transparency regarding health care quality and price, and better incentives for program beneficiaries, enrollees and providers. Consumers and their caregivers will be able to access information from a variety of potential sources, including insurance companies, employers and Medicare-sponsored web sites. For more information, visit:
President's Executive Order
Senate Passes Omnibus Veterans Legislation
The Senate passed an omnibus package of veterans bills on August 3, 2006 that would enhance various benefits. The wide-ranging bill (S.B. 2694) includes provisions from other bills that would: authorize a pilot program to provide caregiver assistance and non-institutional care services to veterans (S.B. 2753); expand veterans? benefits to cover nursing home care at state nursing homes for veterans with service-connected disabilities (S.B. 2762) and establish Parkinson?s Disease and Multiple Sclerosis Centers of Excellence within the VA health system (S.B. 1537). For more information, visit:
Library of Congress - THOMAS
Bill to Reduce Elder Abuse Approved Unanimously by Senate
The Senate Finance Committee unanimously approved legislation (S.B. 2010) that would authorize new Department of Health and Human Services (HHS) grant programs aimed at reducing physical abuse, financial exploitation and neglect of older people by family members or personnel in institutions and residential care facilities. A new long-term care consumer clearinghouse would provide information on the types of services, admission criteria, prices and standard of care at long-term care facilities throughout the country. For more information, visit:
Library of Congress - THOMAS
Federal Government Promotes Long-Term Care Awareness for Consumers
The first part of a national clearinghouse for consumers and their caregivers looking for tools and information to help them plan ahead for long-term care is now online. The clearinghouse, which was mandated by the Deficit Reduction Act (DRA), consists of two components: a National Clearinghouse for Long-Term Care Information website, which will be available in late September, and a Long-Term Care Awareness Campaign, "Own Your Own Future", which is currently available. The clearinghouse and campaign are a collaboration of the Centers for Medicare and Medicaid Services (CMS), the Administration on Aging (AoA), and the Office of the Assistant Secretary for Planning and Evaluation (ASPE) and the states. For more information, visit:
National Clearinghouse for Long-Term Care
Thirteenth Anniversary of the Family & Medical Leave Act
The enactment of the Family & Medical Leave Act (FMLA) in 1993 has allowed more than 50 million Americans to take unpaid time off to care for their loved ones or to recover from their own serious illnesses without putting their jobs at risk. The National Partnership for Women and Families urges the Administration and Congress to expand the FMLA to cover more workers and to access paid leave. For more information, visit:
National Partnership for Women and Families
International News
Australia: National Evaluation of Innovative Pilot Projects in Dementia Care
A new report presents the findings of an evaluation of nine Aged Care Innovative Pool Dementia Pilot projects in Australia. The evaluation report describes the range of new care choices for older Australians with dementia and their caregivers that emerged from the pilot projects and presents evidence that these new service offerings have helped clients to remain at home. The report also highlights issues to inform policy on community care for people with dementia. For more information, visit:
National Evaluation of the Aged Care Innovative Pool Dementia Pilot
Research Reports & Journal Articles
Family Caregiving Highlighted in the American Journal of Nursing
The August 2006 issue of the American Journal of Nursing includes four important articles on family caregiving. The article HIPAA and Talking with Family Caregivers: What does the law really say? asserts that the Health Insurance Portability and Accountability Act (HIPAA) has confused and unnecessarily alarmed many conscientious health care providers. The author suggests a major retraining of health care providers at all levels is needed to dampen the "HIPAA scare" and clarify what HIPAA does and does not say about communication with family caregivers. Another article, Family Caregivers: Caring for Older Adults, Working with Their Families, explores the caregiver's experience and concludes that nurses need to know how to identify the primary caregiver, discern the level of strain caused by caregiving, and create a partnership with the caregiver to help ease the burden. In the piece Wanted: Nurses Who Support Caregivers: Why do family caregivers feel so abandoned by nurses?, the author explains the importance of having a conversation with family caregivers prior to discharging a patient to assess their own needs and help reduce their stress. Lastly, A Caregiver's Assessment of Assessments, is a personal account of how the health care system failed a caregiver in need by neglecting to view her as a part of her husband's care team. For more information, visit:
American Journal of Nursing
New Study of the Alzheimer?s Caregiving Experience
According to a new study by the MetLife Mature Market Institute, the cost of care and the related stress for those who care for someone with Alzheimer's disease increases substantially over those who care for someone with another disabling condition. The study reports that the dollar value of family caregiving for Alzheimer's caregivers is 41% higher than for others and that Alzheimer's caregivers indicate that caregiving has caused their health to worsen 45% more often than other caregivers. Additionally, Alzheimer's caregiving requires a greater commitment of time, and spouses of Alzheimer's caregivers more often report having left their jobs to provide care. For more information, visit:
The MetLife Study of Alzheimer's Disease: The Caregiving Experience
Profiles of Nursing Home Residents on Medicaid and Their Families
The Kaiser Commission on Medicaid and the Uninsured's new report, Profiles of Nursing Home Residents on Medicaid, illustrates the experiences and challenges of consumers with low- and modest-incomes who rely on Medicaid to pay for nursing home expenses. Case examples were developed through in-person interviews with nursing home residents and their families to capture the hardships and frustrations common to caregiving families who want to keep their relatives at home, but lack the financial means and adequate community supports to do so. For more information, visit:
Profiles of Nursing Home Residents on Medicaid
Survey Finds Family Problems in Access to Care Coordination Information
A recent survey by the Commonwealth Fund's Commission on a High Performance Health System to determine Public Views on Shaping the Future of the U.S. Health System, found that over one-third (36%) of adults have serious problems in finding information on care for an aging parent or seriously ill family member. There is a shared belief that expanded use of information technology, care teams, and improved delivery of preventive services could improve the quality of care. Respondents felt expanding insurance and controlling costs should be top priorities for federal action. For more information visit:
Public Views on Shaping the Future of the U.S. Health System
Mothers More Likely to Expect a Daughter to Become Their Care Provider
The August 2006 issue of the Gerontologist includes a study which found that mothers ages 65 to 75 are almost four times more likely to expect a daughter, as opposed to a son, to be their caregiver if they become sick or disabled. Data for this study were collected by in-person interviews with a representative sample of 566 mothers between the ages of 65 and 75 years residing in the greater Boston area. Researchers conclude that practitioners who work with older adults and their families should incorporate parents' views of the "likely" caregiver into family counseling protocols. For more information, visit:
Making Choices: A Within-Family Study of Caregiver Selection
Conferences & Trainings
National Long Term Care Symposium: Impact on Women, Family Caregiving, Wellness
The 2006 National Long Term Care Symposium will be held in Washington, DC on September 20, 2006. From politics, public opinion research, business innovations, family caregiving, to government financing and personal costs, the symposium will include a full range of issues that define long-term care. To register for the symposium, RSVP no later than September 12 to [email protected] with "Long Term Care Symposium" in the subject line.
National Organization for Rare Disorders 2006 Annual Conference
The 2006 NORD Annual Conference will be held in Bethesda, MD from September 28 - October 1, 2006. This year's theme will be: Road Map for Rare Disease Research. Speakers from the federal government, patient organizations and industry will talk about nuts-and-bolts issues related to rare disease research. For more information, visit:
National Organization for Rare Disorders 2006 Annual Conference
Institute for Family-Centered Care Seminar
The University of Michigan Health System is hosting a seminar in Dearborn, MI from October 22 - 25, 2006, entitled, Hospitals Moving Forward with Patient- and Family-Centered Care. This seminar provides comprehensive and practical sessions designed to help administrators, clinical staff, patients and families become effective agents for patient- and family-centered change in their hospitals and health systems. For more information, visit:
Hospitals Moving Forward with Patient- and Family-Centered Care
Funding, Media & Miscellaneous
Family Caregiving - A Thirty Year Perspective
Lynn Friss Feinberg, Deputy Director of the National Center on Caregiving at Family Caregiver Alliance (FCA), received the American Society on Aging (ASA) 2006 Leadership Award at the Association's spring conference in Anaheim, CA. An essay, based on her award lecture is published in the July-August 2006 edition of ASA's Aging Today. The essay portrays the growth and development of FCA and highlights Feinberg's experience and insights from three decades of achievements and lessons learned in the field of family caregiving. For more information, visit:
How Far Has Family Caregiving Come? A Thirty Year Perspective
Consumer Reports Rates U.S. Nursing Homes
The report, Nursing Homes: Business as Usual, appeared in the August 2006 issue of Consumer Reports and found the best place for consumers to start looking for a nursing home is an independent, not-for-profit establishment. The report found not-for-profit nursing home patients received more attention from staff - an average of an hour more a day and two hours more a day of time with registered nurses. Consumer Reports looked at staffing levels, quality indicators and recent state inspection reports for about 16,000 nursing homes across the country. It is recommended that families searching for a nursing home look at the home?s owner and read reports on the home by Centers for Medicare and Medicaid Services (CMS) and ombudsman complaints. Paying unannounced visits with careful attention to meals and services is also suggested. For more information, visit:
Nursing Home Quality Monitor
New Report on Balancing Work and Family Responsibilities
The Center for Law and Social Policy recently released the report, Getting Punched: The Job and Family Clock which describes how workers often face dual and dueling responsibilities - those at work and those at home. Getting Punched suggests 10 ways that government should get more involved in promoting responsive workplaces for workers of all wages. The report recognizes that there is a lot that government can and should do to foster creative workplace strategies that recognize that most workers today have family responsibilities. For more information, visit:
Getting Punched: The Job and Family Clock
