Free Dementia Care Guide Now Better than Ever

A dementia care guide that has been helping direct-care workers since 2006 is now better than ever.

Knowledge and Skills Needed for Dementia Care: A Guide for Direct Care Workers in Everyday Language helps direct-care workers determine whether they have the skills they need to deliver person-centered dementia care — and where to go for assistance if they need training. It also helps supervisors, policymakers, and others evaluate dementia care training programs. It was developed by a team of experts and reviewed by many more, including more than 60 home health aides and CNAs.

“Most people who provide hands-on care for individuals with dementia have big, warm, caring hearts,” says Dementia Project Coordinator Micki Horst. ”They want to learn all they can about how best to care for and interact with someone with dementia. We developed this guide to give them a tool for assessing their own competencies.”

The updated version includes useful additions:

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Voices Institute Graduates - May the Root Thrive!

We just completed another historic and successful step forward for the movement to empower direct care workers and to fix our broken long-term care system!

It is clear that Direct Care Workers want a voice and to have their voices heard to improve the profession and the quality of care and services. It was fitting that direct care workers from 12 states met at a place whose motto is: May the Root Thrive! The 25 leaders from 12 states gathered at the DeKoven Center are the roots of our growing movement! I have no doubt that each and every one of the attendees will ensure that the long-term care care-gap is avoided and direct care workers are empowered by applying the powerful tools we all learned at our five day training program.

The events I witnessed at the Voices Institute Inaugural class reminded me of the gracious, generous and powerful nature of direct care workers and their ability to meet any challenge and thrive: flexibility, ability to solve problems, address crisis situations, balance challenging schedules are the stuff that the daily care-giving experience is made of. And so, all the Voices Institutes leaders gathered and we learned speech making, fundraising, organizational and self empowerment strategies and we all thrived in the intense and challenging environment Bob Hudek designed for us. Thank you Bob Hudek for locating the perfect learning environment and for designing a curriculum that gave us comfort, hope and thought us powerful tools that along with Vera’s empowerment tools will lead us to success.


Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

My Caregiver Magazine

The National Association of Health Care Assistants- NAHCA- used to have a magazine for CNA’s called “CNA TODAY”- it ceased publication a couple years ago. NOW, they introduce a new magazine for ALL direct care workers in the nursing field, titled, “MY CAREGIVER”.

From the MY CAREGIVER web site:

My Caregiver is a quarterly magazine published by the Academy of Certified Health Professionals (ACHP) for and about health care assistants and their role in long term care. It is a special magazine, a publication virtually every person in the long term care industry will want to read.

With a circulation of 10,000, we reach nursing assistants, Directors of Nursing, facility Administrators, nursing home residents, and their families, product manufacturers, policy makers, and other health care associations.

The first issue of My Caregiver debuted March 2008. It evolved from the original CNA Today magazine to focus on health care assistants from diverse settings in long term care. The original magazine, CNA Today, launched June 2001 and was unveiled at the NAGNA National Convention.

Now My Caregiver will prove to be a remarkable resource for information on long term care for all who perform the role or duties of a nursing assistant, regardless of title.

The magazine is published quarterly and costs $15.00/year for non NAHCA members; $10.00/year for members.

NAHCA’s main web site is HERE.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

The Health Coverage Crisis in Direct-Care

Download the report (pdf 1.9MB)

Report Shows High Rates of Injury, Inadequate Health Coverage May Result in Caregiver Shortage

As part of National Women’s Health Week, PHI’ Health Care for Health Care Workers Campaign will deliver a sobering report -– Invisible Care Gap: Caregivers without Health Coverage — on the health insurance status of our nation’s caregiving workforce, 90% of which is female. Based on the most recent data from the U.S. Bureau of the Census and Bureau of Labor Statistics, the report reveals that:

• Nurse aides have the highest rates of workplace injuries and illnesses in the country, making it America’s most dangerous job.
• Nearly 30% of direct-care workers have no health insurance coverage, twice the rate of the general population.
• The country’s fastest-growing workforce—jobs providing in-home personal care services—is the least likely to have health coverage.
• Direct-care wages are so low (median hourly wage of $9.56/hr) that nearly 30% live in or near poverty and few can afford high cost of insurance premiums.
  

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Antipsychotics In Older Adults With Dementia Associated With Serious Adverse Events And Death

Short term courses of antipsychotic medications, when given to older adults with dimentia, are associated with a greater risk of hospitalization and death, according to a report released on May 26, 2008 in the Archives of Internal Medicine, one of the JAMA/Archives journals.

Antipsychotic drugs are used to treat various psychotic disorders -- some conventional examples include haloperidol or loxaprine. The authors point out that a new generation of these drugs has been released, but the effects of short term prescription have not yet been ascertained. "Newer antipsychotic drugs (olanzapine, quetiapine fumarate and risperidone) have been on the market for more than a decade and are commonly used to treat the behavioral and psychological symptoms of dementia," they say. "Antipsychotic drugs are often used for short periods to treat agitation in clinical practice. They are frequently prescribed around the time of nursing home admission." Approximately 17% of nursing home admission begin a regimen of antipsychotic medications, with only 10% on a single prescription. Given this information, they say, it is important to evaluate the effects of short term regimens on patients.

To investigate this issue, Paula A. Rochon, M.D., M.P.H., F.R.C.P.C., of the Institute for Clinical Evaluative Sciences (ICES), Ontario, and colleagues examined older adults living with dementia in the community and in nursing homes between 1997 and 2004. In each setting, three separate groups of equal size were identified, each differing only in their exposure to antipsychotic medications. One group had not received antipsychcotics, one group had been prescribed atypical or newer antipsychotics, and the last group was prescribed conventional psychotics. For older adults in the community, 6,894 were in each group for a total or 20,682 patients. In the older adults with dementia living in nursing homes, each group had 6,853 for a total of 20,559 subjects.

The medical records of each participant were examined, and hospital admissions and death within 30 days of the initiation of therapy were noted as serious adverse events. The team found that, in the general community, those prescribed with nonconventional antipsychotic drugs were more likely to experience adverse events, while those on conventional antipsychotic drugs were even more likely. "Relative to community-dwelling older adults with dementia who did not receive a prescription for antipsychotic drugs, similar older adults who did receive atypical antipsychotic drugs were three times more likely and those who received a conventional antipsychotic drug were almost four times more likely to experience a serious adverse event within 30 days of starting therapy." The authors continue, noting a similar but less pronounced trend in the nursing room group: "Relative to nursing home residents in the control group, individuals in the conventional antipsychotic therapy group were 2.4 times more likely to experience a serious adverse event leading to an acute care hospital admission or death. Those in the atypical antipsychotic group were 1.9 times more likely to experience a serious adverse event during 30 days of follow-up."


Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

CMS Places Three-Year Moratorium On Construction Of New Long-Term Care Hospitals

CMS officials this week announced a regulation that places a three-year moratorium on the construction of new long-term care hospitals and limits the effects of payment reductions to existing facilities, CQ HealthBeat reports. According to CQ HealthBeat, admissions criteria among long-term care hospitals and the industry’s “Medicare-fueled growth” had “raised eyebrows among policy makers.”

As a result, several regulatory provisions, including a proposal to reduce base rates and the extension of the so-called 25% rule, were “putting the hurt” on the long-term care hospital industry. The 25% rule reduced payments for care of each patient from a single referring facility above one-quarter of a long-term care hospital’s patient load. According to CQ HealthBeat, the 25% rule addressed hospitals building long-term care facilities within their own facilities to capture higher revenues associated with long-term care. The new regulation implements provisions of a measure signed by President Bush last year regarding Medicare and Medicaid payments and an extension of SCHIP.

The new revisions “ease the impact” of the 25% rule and block the base rate reduction, according to CQ HealthBeat. In addition, the regulation sets policies for implementing the moratorium and determines which facilities will be prohibited from new construction. CMS will be evaluating exemptions on a case-by-case basis, according to Alec Vachon, a Washington, D.C. consultant and former Senate Finance Committee staffer. The regulation will be published in the Federal Register on Thursday (Reichard, CQ HealthBeat, 5/21).

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Statement By Mike Leavitt Secretary Of Health And Human Services On Two Medicaid Rules, USA

The Administration has been asked several times the impact of implementing two Medicaid rules when an existing moratorium expires May 25, 2008.

1. Graduate Medical Education -- CMS 2279 -- proposed rule published on May 23, 2007; and

2. Cost limit for Providers Operated by Units of Government and Provisions to Ensure the Integrity of Federal-State Financial Partnership -- CMS 2259-FC -- final rule with comment period, published on May 29, 2007.

In response, Secretary Michael O. Leavitt released the following statement today:

"I reiterate the Administration's willingness to work with Congress and Governors to discuss their concerns before the rules go into effect," Secretary Leavitt said. "We will voluntarily refrain from making these rules effective until August 1, 2008, more than 60 days after the moratorium expires. I invite interested parties to sit down with me and my staff in the coming weeks to ensure that we meet our mutual commitments to protect health care for low-income individuals."

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Caregivers For Alzheimer's Patients Record Life Stories With Project StoryKeeper

Project StoryKeeper, a non-profit organization dedicated to preserving family heritage and announced that new findings by the Alzheimer's Association are increasing the need to document the life stories of patients. Caregivers of Alzheimer's patients can get access to Project StoryKeeper's interviewing technology by visiting http://www.storykeeper.org.

"The Alzheimer's Association just announced that one in eight Baby Boomers can expect to develop the disease," said Dennis Stack, Founder of Project StoryKeeper. "That means that more and more family histories - and the richness they hold - will be slipping away if we don't do something now to preserve them. We think Project StoryKeeper is a great way for families and caregivers of all ages to use the latest technology to keep family legacies going strong."

Targeted towards caregivers, Project StoryKeeper's online training program includes questions, interviewing techniques, and recording tips to be used in drawing out the personal histories of senior citizens at home or within elder care settings such as hospices, assisted living facilities, and home care agencies.

Capturing life stories - through technology.

Captured stories can be posted and archived on a private family web page on http://www.lifelenz.com. LifeLenz is a family-centric social network designed to enable families to easily preserve their legacy, stay in touch and communicate in ways not possible before. The tools LifeLenz provides allow for caregivers and family members to share in each other's lives through text, audio, video and photographs.

Easy-to-use online communication tool.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

House measure would outlaw nursing home arbitration clauses

Nursing home operators would be unable to subject residents and prospective residents to binding arbitration clauses under a bill introduced Thursday afternoon in the U.S. House. When a companion bill was introduced in the Senate in April, consumer groups enthusiastically praised it and provider advocates roundly criticized it.

"This legislation will not prohibit arbitration. Instead, it will simply ensure that residents have the choice whether to arbitrate a dispute after it has arisen," said bill co-sponsor Rep. Linda Sanchez (D-CA), whose father recently entered a nursing facility.

Sanchez said hosting three recent hearings on the Federal Arbitration Act as the chairwoman of the Subcommittee on Commercial and Administrative Law helped form her opinions on the topic. "The long term care industry is one stark example where businesses draft take-it-or-leave-it admission agreements for prospective residents that include pre-dispute, mandatory arbitration clauses."

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Measure to expand long-term care options wins House approval

NASHVILLE (AP) -- A proposal that will allow the state to offer more home and community-based care has passed the House.

The House voted 97-0 to pass the bill championed by Gov. Phil Bredesen and sponsored by Rep. Dennis Ferguson, a Democrat from Harriman.

The Senate must approve some small differences between its version and the House's.

TennCare, the state expanded Medicaid program, currently spends almost all its annual $1.2 billion long-term care budget on nursing homes.

The legislation would begin the process of directing about half of those funds toward home-based care over the next decade.

It also seeks to simplify the process for determining eligibility and for enrolling in home-based care programs.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

House Committee Holds Hearing On Concerns About Nursing Home Ownership, Inspections

The House Energy and Commerce Oversight and Investigations Subcommittee on Thursday held a hearing to examine the effects that the "increasingly veiled nature" of nursing home ownership and problems with inspections have had on the quality of care for elderly and disabled residents, CQ HealthBeat reports (Reichard, CQ HealthBeat, 5/15). According to CongressDaily, more than 50% of nursing homes are part of chains, with many of those owned by private equity firms that establish "layered entities" to operate the facilities, "making it difficult" for CMS, states and consumers to determine their owners and operators (Cox, CongressDaily, 5/16).

At the hearing, Lewis Morris, chief counsel to the Inspector General for HHS, said that CMS operates a database called "Pecos" that includes some nursing home ownership information but added that the system does not address the issue adequately. The database includes ownership information on 70% of the nursing homes that participate in Medicare, according to acting CMS Administrator Kerry Weems. He said that CMS seeks to "populate Pecos 100%" and link ownership information to quality data on the Nursing Home Compare Web site but added that the agency must have "usable" ownership information (CQ HealthBeat, 5/15).

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Inclusive Livable Communities for People with Psychiatric Disabilities

Table of Contents

• Executive Summary

  • The Livable Community Framework

• Chapter One: Introduction to Livable Communities for People with Psychiatric Disabilities

  • Terminology

• Chapter Two: The Recovery Model and Its Implications

  • What Is the Recovery Model?
  • An Empowerment Model of Development and Recovery
  • Recovery and Independent Living

• Chapter Three: Housing—The Key Element

  • Programs or Homes?
  • Two Model Programs
  • Recommendations

• Chapter Four: Real Jobs at Real Wages

  • The Importance of Work
  • The Shift to Competitive Employment
  • The Problem with Benefits
  • Work Opportunities in Consumer-Run Programs
  • Federal Policies and Employment
  • Recommendations

• Chapter Five: Stigma and Discrimination—The Invisible Barriers

  • Defining Stigma and Discrimination
  • Stigma and Discrimination Within the Mental Health System
  • Recommendations

• Chapter Six: Livable Communities in Action—Models That Work

  • Identifying What Helps
  • Independent Living
  • Personal Assistance Services
  • Self-Help/Peer Support Programs
  • Networking and Education for Peer Support
  • Provider-Run Programs That Promote Recovery
  • Innovative Uses of Medicaid Funding
  • Person-Centered Planning
  • Self-Determination
  • Recommendations

• Chapter Seven: Other Barriers to Inclusion in Livable Communities

  • People Living in Rural Areas
  • Accessing General Medical Care
  • Recommendations

• Chapter Eight: Envisioning an Ideal Future

• Appendix

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Justice O'Connor addresses full house at Alzheimer's hearing

The Senate Special Committee on Aging played host to two high-profile witnesses this week at a hearing on Alzheimer's that drew an enormous crowd.

Former Speaker of the House Newt Gingrich and former Supreme Court Justice Sandra Day O'Connor, spoke before the committee. O'Connor shared her experience as a caregiver to her husband, John, who was diagnosed with Alzheimer's in 1990. She left the court as a result of his illness. The packed house paid close attention to all the witness' testimony, but was especially rapt by Justice O'Connor, according to National Public Radio.

She called for the expansion of clinical and research efforts to improve diagnosis and treatment of Alzheimer's; emphasizing prevention and early diagnosis; open communication between researchers in real time, as opposed to waiting months for studies to be published; a renewed national commitment to public investment in developing new treatments; and improved support for those with Alzheimer's and their caregivers.

"I don't believe I've ever witnessed as many people at a hearing in the five, six years that I've been in the United States Senate," said Senator Elizabeth Dole (R-NC) of the proceedings.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Explaining the Care Gap

f you need someone to understand the urgency of the growing care gap in long-term care, you might want to pass on a copy of Occupational Projections for Direct-Care Workers 2006-2016.

“Our analysis suggests that demand for direct-care workers over the next decade, particularly in home- and community based settings, will continue to outpace supply dramatically-unless policymakers and employers work together to make these jobs competitively attractive compared to other occupations,” says the six-page fact sheet by PHI Director of Policy Research Dorie Seavey.

Short text blocks and charts like the ones reproduced here interpret U.S. Bureau of Labor Statistics data in often striking ways. For instance, did you know the U.S. is expected to need a million additional direct-care workers, for a total of 4 million, by 2016? Or that direct-care workers will outnumber teachers from kindergarten through high school combined (3.8 million), fast food & counter workers (3.5 million), and cashiers (3.4 million)?

That additional million workers represents an increase of 34 percent in just one decade, the fact sheet points out, and we can’t count on finding all those people in the usual pool of workers - women aged 25 to 54 - since that pool is expected to increase by less than 1 percent between 2006 and 2016.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Center For Medicare Advocacy Issues New Report On Nursing Home Decisions

Nursing home decisions issued by the Department of Health and Human Services' Departmental Appeals Board (DAB) in 2007 highlight serious failures in care that cause residents to suffer unnecessary pain, injury, trauma, and death. "Despite the serious deficiencies reflected by these cases, the federal enforcement response is usually modest, at best," said Toby S. Edelman, Senior Policy Attorney with the Center for Medicare Advocacy and author of the just-released report,, an analysis of nursing home enforcement decisions issued by the DAB. "The federal government imposes only minor fines for these deficiencies," she continued, citing a case where a trivial $4050 fine was imposed when a resident strangled to death on her bedrail, after having fallen out of bed numerous times and been found caught by the bedrail in the same way a week before.

The Center for Medicare Advocacy's study of the 85 decisions is the first study ever made of the administrative appeals filed by nursing homes when federal remedies are actually imposed against them for poor care. "The study shows not only that the problems in care are serious and that penalties are modest, but also that facilities choose to appeal these enforcement actions through the administrative appeals process. Almost always, the facilities lose their cases," Edelman said. The government won 66 of the 71 cases that reached the merits of the appeals - a 93% success rate.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Serious Deficiencies in Nursing Homes Are Often Missed, Report Says

Image via WikipediaNursing home inspectors routinely overlook or minimize problems that pose a serious, immediate threat to patients, Congressional investigators say in a new report.

In the report, to be issued on Thursday, the investigators, from the Government Accountability Office, say they have found widespread “understatement of deficiencies,” including malnutrition, severe bedsores, overuse of prescription medications and abuse of nursing home residents.

Nursing homes are typically inspected once a year by state employees working under contract with the federal government, which sets stringent standards. Federal officials try to validate the work of state inspectors by accompanying them or doing follow-up surveys within a few weeks.

The accountability office found that state employees had missed at least one serious deficiency in 15 percent of the inspections checked by federal officials. In nine states, inspectors missed serious problems in more than 25 percent of the surveys analyzed from 2002 to 2007.

The nine states most likely to miss serious deficiencies were Alabama, Arizona, Missouri, New Mexico, Oklahoma, South Carolina, South Dakota, Tennessee and Wyoming, the report said.

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Elder Justice Act

To amend the Social Security Act to enhance the social security of the Nation by ensuring adequate public-private infrastructure and to resolve to prevent, detect, treat, intervene in, and prosecute elder abuse, neglect, and exploitation, and for other purposes.

• Other Bill Titles

  
  
• Official: To amend the Social Security Act to enhance the social security of the Nation by ensuring adequate public-private infrastructure and to resolve to prevent, detect, treat, intervene in, and prosecute elder abuse, neglect, and exploitation, and for other purposes. as introduced.
  
• Short: Elder Justice Act as introduced.
  

3/29/2007--Introduced.
Elder Justice Act - Amends the Social Security Act (SSA) to establish an Elder Justice program under title XX (Block Grants to States for Social Services). Establishes within the Office of the Secretary of Health and Human Services (HHS) an Elder Justice Coordina more...

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

End-Stage Dementia Patients Deserve The Same Access To Palliative Care As People With Cancer

There is an urgent need to improve end-of-life care for older people in the final stages of dementia, according to an international review published in the May issue of Journal of Clinical Nursing.

"We must act now to stop people with dementia from suffering from protracted, potentially uncomfortable and undignified deaths" says Jan Draper, Professor of Nursing for The Open University, UK.

"The management of dementia is becoming a major international public health concern because people are living longer which means that more people are likely to develop this disease."

Professor Draper teamed up with Deborah Birch, a Clinical Nurse Specialist working with older people in Lincoln,UK, to review 10 years of published research. They carried out a detailed analysis of 29 studies, from the USA, UK, Canada, Israel, Switzerland, Ireland, the Netherlands, Sweden and Finland.

"Our review has reinforced the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and clearly identified some of the barriers to extending such provision" says Professor Draper.

"These include concerns that such an expansion might lead to skills and funding shortages and, in turn, compromise the ability of existing palliative care teams to provide care to cancer patients, who tend to be the main recipients of this kind of care.

"We believe that clinicians and patient groups caring for patients with advanced dementia need to work together with specialist palliative care providers and health commissioners to develop, fund and evaluate appropriate cost-effective services that meet the needs of both patients and their families.


Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

National Long Term Care Leaders to Release New Data, Discuss Negative National Economic, Jobs Impact

/PRNewswire-USNewswire/ -- The leaders of the American Health Care Association (AHCA) and Alliance for Quality Nursing Home Care will conduct a media conference call to release and comment on a new study from The Lewin Group outlining the negative impact to the U.S. economy resulting from the Bush Administration's recently-announced cut of $770 million to Medicare-financed nursing home care for FY 2009, on



Tuesday, May 13, 2008

11 am EDT

Dial in (800) 762-6067



The new analysis will also quantify how the Medicare cuts, announced last week by the Centers for Medicare and Medicaid Services (CMS), will harm the U.S. jobs base and the ability of federal and state governments to generate revenue for key state and national priorities. Speakers will include:





Also to be released is new state by state data from AHCA indicating the 10 hardest-hit states by Medicare cuts to in nursing home care resulting from the $770 million FY 2009 funding reduction.



To reserve a place on the call, please contact Amy Weiss (Amy@pointblankpa.com) 202-203-0448 or Rebecca Reid 410-267-1128 (Reidconsulting@comcast.net).



-- Alan Rosenbloom, President of the Alliance for Quality Nursing Home Care -- Bruce Yarwood, President and CEO of the AHCA -- Al Dobson, Consultant, The Lewin Group, and -- Tony Marshall, Reimbursement Director for the Florida Health Care Association

SOURCE The Alliance for Quality Nursing Home Care

Source :PR Newswire

Norman DeLisle, MDRC
"With Liberty and Access for All!"
GrandCentral: 517-589-4081
MDRC Website: http://www.copower.org/
LTC Blog: http://ltcreform.blogspot.com/
Recovery: http://therecoveringlife.blogspot.com/
Change: http://prosynergypsc.blogspot.com/

Caregiving is Women’s Work

Caregiving is women’s work.

It is with that simple statement in mind that I went to the Raising Women’s Voices Conference last month, sponsored by the Avery Institute, Merger Watch, and the National Women’s Health Network.

I was invited to participate on the opening plenary panel to discuss voices that are traditionally left out of health care reform discussions. I talked about direct-care workers — and about Health Care for Health Care Workers and the broader work of PHI.

The conference brought together women’s health advocates, providers, and women in general to talk about health care issues and shape a women’s agenda for health care reform. There were the usual PowerPoint presentations and policy recommendations, but the way the organizers encouraged presenters to tell our stories made it clear from the start that this was no ordinary conference. Raising Women’s Voices lived up to its name, honoring the power of women’s voices and experiences as consumers and providers.

In my day-to-day work talking with policymakers, I have to show lots of facts and figures about direct-care workers not having health insurance and figure out how to “make the case” that this issue matters. At this conference, people listened intently when I opened my presentation with the story of Iya’ Negra, a direct-care worker in Maine. Iya’Negra was diagnosed with fast-growing fibroid tumors after she was kicked by a consumer with Alzheimer’s and the pain from the kicking did not subside. Because she had no health insurance, her health problem turned into a crisis for her whole family.

Sure, the fact that one in four direct-care workers is uninsured was a new and shocking statistic to many at the conference, but what struck them most was how that issue impacts the day-to-day lives of workers, the consumers they assist, and their families.

Candidates on LTC

from Hollis Turnham:

I thought you all would be interested in a recent article in the New England Journal of Medicine on long term care and the presidential election.

http://content.nejm.org/cgi/reprint/358/19/1985.pdf

Who should MDs let die in a pandemic? Report offers answers

The components of this elitist, eugenics-inspired piece of sh** are available at http://www.chestjournal.org/content/vol133/5_suppl/
I wonder if medical people will exclude their own family members if they fall into these categories?

Doctors know some patients needing lifesaving care won't get it in a flu pandemic or other disaster. The gut-wrenching dilemma will be deciding who to let die.

Now, an influential group of physicians has drafted a grimly specific list of recommendations for which patients wouldn't be treated. They include the very elderly, seriously hurt trauma victims, severely burned patients and those with severe dementia.

The suggested list was compiled by a task force whose members come from prestigious universities, medical groups, the military and government agencies. They include the Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services.

The proposed guidelines are designed to be a blueprint for hospitals "so that everybody will be thinking in the same way" when pandemic flu or another widespread health care disaster hits, said Dr. Asha Devereaux. She is a critical care specialist in San Diego and lead writer of the task force report.

The idea is to try to make sure that scarce resources — including ventilators, medicine and doctors and nurses — are used in a uniform, objective way, task force members said.

Their recommendations appear in a report appearing Monday in the May edition of Chest, the medical journal of the American College of Chest Physicians.

"If a mass casualty critical care event were to occur tomorrow, many people with clinical conditions that are survivable under usual health care system conditions may have to forgo life-sustaining interventions owing to deficiencies in supply or staffing," the report states.

To prepare, hospitals should designate a triage team with the Godlike task of deciding who will and who won't get lifesaving care, the task force wrote. Those out of luck are the people at high risk of death and a slim chance of long-term survival. But the recommendations get much more specific, and include:

_People older than 85.

_Those with severe trauma, which could include critical injuries from car crashes and shootings.

_Severely burned patients older than 60.

_Those with severe mental impairment, which could include advanced Alzheimer's disease.

_Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.

Dr. Kevin Yeskey, director of the preparedness and emergency operations office at the Department of Health and Human Services, was on the task force. He said the report would be among many the agency reviews as part of preparedness efforts.

Public health law expert Lawrence Gostin of Georgetown University called the report an important initiative but also "a political minefield and a legal minefield."

The recommendations would probably violate federal laws against age discrimination and disability discrimination, said Gostin, who was not on the task force.

If followed to a tee, such rules could exclude care for the poorest, most disadvantaged citizens who suffer disproportionately from chronic disease and disability, he said. While health care rationing will be necessary in a mass disaster, "there are some real ethical concerns here."

James Bentley, a senior vice president at American Hospital Association, said the report will give guidance to hospitals in shaping their own preparedness plans even if they don't follow all the suggestions.

He said the proposals resemble a battlefield approach in which limited health care resources are reserved for those most likely to survive.

Bentley said it's not the first time this type of approach has been recommended for a catastrophic pandemic, but that "this is the most detailed one I have seen from a professional group."

While the notion of rationing health care is unpleasant, the report could help the public understand that it will be necessary, Bentley said.

Devereaux said compiling the list "was emotionally difficult for everyone."

That's partly because members believe it's just a matter of time before such a health care disaster hits, she said.

"You never know," Devereaux said. "SARS took a lot of folks by surprise. We didn't even know it existed."

ADAPT Action Folow-up

Apparently, the Democratic Party released this statement today about how
the RNC and Sen. McCain's office treated ADAPT on Tuesday. Just fyi,

For Immediate Release May 1, 2008

Contact: Damien LaVera 202-863-8148

Dean: Arrests Show McCain Out of Touch
With Americans With Disabilities

Washington, DC - This week, even as McCain was traveling the country
outlining a flawed health care agenda that does little to increase access
to quality, affordable health care for Americas working families, John
McCain showed how out of touch he is with Americans with disabilities.
Instead of meeting with disability rights activists to explain why he
refuses to co-sponsor the Community Choice Act of 2007, Senator McCain's
staff allowed more than 20 activists to be arrested in front of his Senate
office. [Associated Press, 4/29/08]

Both Democratic presidential candidates are co-sponsors of the bill, which
would allow countless Americans with disabilities the choice to live and
work in their own homes and communities. In addition, Democratic National
Committee Chairman Howard Dean has met with community activists and
repeatedly expressed his support for the bill. By contrast, McCain has
refused to join the effort to end the persistent institutional bias in
America's health care system that forces too many people with disabilities
into nursing homes and institutions. The bipartisan bill would amend the
Social Security Act to allow people who are eligible for Medicaid coverage
of nursing home costs to spend it instead on home-based or community care.

DNC Chairman Howard Dean issued the following statement:
"At a time when John McCain is on the campaign trail talking about health
care choices, he refuses to explain why he opposes a bill that would let
Americans with disabilities choose how and where to live, work and receive
care. I am proud to lead a Party that supports the fundamental right of
every single American to make his or her own choices about where to live
and work. Apparently John McCain and his staff would rather let activists
get arrested outside his office than explain his position on this critical
issue. John McCain is either profoundly out of touch with the needs and
challenges confronting Americans with disabilities or just doesn't care.
Either way, he's the wrong choice for Americas future."

Paid for and authorized by the Democratic National Committee,
http://www.democrats.org. This communication is not authorized by any candidate or candidate's committee.
FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org/

Elderly In Long-term Care Setting Suffer Depression More Than Those Cared For At Home

t some point after they were admitted, compared to only a quarter of the home-cared elders.

Jodi Shapuras and Lindsay Egan, undergraduate students in the social work program at ISU, conducted the research at their internships as part of a senior-level field practicum class.

“We are both interested in working with the elderly population in our careers, so we conducted this research to get a better feel for the prevalence of depression in those who need some level of outside care,” said Shapuras of Mitchell, Ind. “As social workers, it is important to understand the mental health issues, such as depression, within the different care settings.”

Shapuras and Egan said they weren’t surprised by their findings.

“We actually hypothesized that the long-term care patients would utilize antidepressants more and would self-report depression more,” said Egan of Terre Haute, Ind. “When an individual moves to a long-term care facility, they undergo a tremendous amount of changes. They are no longer able to live independently and are relying on others for care, and this greatly affects how they feel about themselves and the world around them.”

Shapuras added that in the home-care setting, elders are still residing within a familiar environment.

Nursing home evacuation guidelines unveiled at Hurricane Summit

Attendees at the Hurricane Summit in Orlando this week released new criteria for the safe evacuation of nursing home residents in the event of a natural disaster.

New criteria acknowledge recommendations made in a recent Government Accountability Office (GAO) report, which was released in April of 2008. Specific plans of action take into account such factors as a facility's location, its relative distance from the natural disaster and how likely it is to be affected by floodwaters. Representatives of long-term care organizations and state emergency command centers from Southern states attended the summit, which took place on Wednesday.

Lessons from Hurricane Katrina informed the latest guidelines, said LuMarie Polivka-West of the Florida Healthcare Association. Even though only 15% of the population of New Orleans in 2005 was seniors, 70% of deaths resulting from Hurricane Katrina occurred among the elderly, according to the Centers for Disease Control and Prevention. These new guidelines are the latest effort to form a plan that would ensure the safety of those living in long-term care facilities.

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Silver Alert helps rescue lost seniors

hen 83-year-old Helen Long left her North Carolina home without notice last January, her daughter called state police.

The police alerted the community using automated road signs and radio and television ads that aired descriptions of Long and her truck and explained that she had dementia. Within six hours, a UPS driver spotted her vehicle, called for help, and Long was returned home unharmed.

But not all elders with dementia who go missing are rescued with such efficiency — or at all.

North Carolina is one of only six states with a new type of missing persons program called Silver Alert that experts say is urgently needed to address a growing problem.

Transparency in Nursing Homes (What a concept!)

NCCNHR: The National Consumer Voice for Quality Long-Term Care



Action Alert!!!



Now You Can Call Toll-Free to Ask Your Senators to Support

The Most Important Nursing Home Quality Legislation in 20 years!



1-866-544-7573



The Service Employees International Union (United for Quality Care) is sponsoring this toll-free line for you to ask your Senators to support S. 2641, the Nursing Home Transparency and Improvement Act. Please call NOW!



To Make Your Call

Dial 1-866-544-7573. After a brief message about the bill, you will be asked to press "1" to be connected to a Capitol operator. Ask for your senator's office. (Senators are listed in order by State on the Senate website, if you need to find their names.) When the senator's office answers, identify yourself and say:



"Please ask Senator ______ to co-sponsor S. 2641, the Nursing Home Transparency and Improvement Act. The bill is sponsored by Senators Grassley and Kohl. Nursing home residents and their families in [our state] are strongly supporting this bill."





To Get More Information About S. 2641

You can get more details about the Nursing Home Transparency and Improvement Act on the NCCNHR website, www.nccnhr.org. See our Fact Sheet or click here to download the Text of S. 2641.



S. 2641 Will:

* Provide the public information about who owns and operates nursing homes; nurse staffing levels and turnover rates; penalties for poor care; and how much they spend on nursing and other costs.

* Require annual audits and independent monitoring and sanctions for chains with chronic problems

* Increase civil monetary penalties, including fines up to $100,000 when a resident dies from neglect or abuse.

* Require facilities to pay fines into an escrow account while they pursue appeals.

* Strengthen complaint processes.

* Require facilities to give 60 days notice before they close, and continue Medicare and Medicaid until residents are relocated.

* Provide for studies of temporary management, Special Focus Facilities, culture change, and training of nurse aides and supervisors.



Call 1-866-544-7573 Now!

Share this e-mail with your colleagues, networks, friends, nursing home residents, and families.

Recognition of Pain in Cognitively Impaired Older Adults

The May issue of the University of Iowa Geriatric Center E-News, "Recognition of Pain in Cognitively Impaired Older Adults," is available online.

Statehealthfacts.org Posts Updated, New Information On Medicare, Medicaid

New and updated data, Statehealthfacts.org: Statehealthfacts.org has added new and updated data on Medicare and Medicaid. New data from the CMS Office of the Actuary on Medicare on Medicare spending estimates by state of residence for 1995 through 2004 are available for all states. These estimates are based on where individuals reside and include total Medicare spending; spending on hospital care, physician services, dental services, home health care, drugs and nursing home care; total per enrollee spending; per enrollee spending by service type; and the average annual percent growth in Medicare spending from 1995 to 2004. New data on total Medicaid spending estimates by state of residence for 1995 through 2004 also are available for all states (Kaiser Family Foundation release, 5/1).

State cash to boost city nursing care

The Michigan Department of Community Health plans to announce today a $1.7 million investment into Detroit nursing homes to improve the quality and skills of the staff serving a population of low-income, minority residents with chronic and mental health issues.

The state funding will be disbursed over two years to the Detroit Area Agency on Aging, which has identified numerous problems with the city's nursing homes, such as substandard care, financial difficulties and likelihood of closures.

Of the $1.7 million, $350,000 will be used for enhanced training of certified nursing assistants to care for patients with complex needs through a partnership with SEIU Healthcare Michigan, said James McCurtis Jr., a spokesman for the Michigan Department of Community Health.

from Gerald Butler:

5/1/2008

Mental Health Month

Letter to Consumers

In celebration of Mental Health Month we are asking consumers to dedicate this month to their own personal recovery. I am requesting that for the next 30 days we put the negativity in our lives on the back burner, and spend this month enjoying our recovery. This will be for only 30 days after which I guarantee you’ll feel better about yourself. The better you feel about yourself, the better your recovery. We are asking for you to treat yourself with the respect and dignity you deserve. Following are just a few suggestions, as I know each one of you will have better ideas

Support your brothers and sisters in recovery, when they speak, hear them, as you would like to be heard for their daily struggles are the same as yours. Remain humble, but remember, due to your suffering, (the hotter the fire the purer the gold) you have earned the same respect as anyone else. Practice forgiving yourself, it becomes easier to forgive your brothers and sisters. As you learn to love yourself, so you learn to love others. If you make a mistake, apologize to those you may have harmed, but by all means, be sure to keep moving. Walk proud, with integrity and your head held high because not only have you survived but you have also chosen to help others and that makes you heroic.

If you are good on the computer, try a new program. If you’re an artist, try painting something you always wanted to paint. If you are a musician, songwriter, or singer, join the Recovery Band. If you are good at managing an office, maybe check into taking a course, or applying for a new job. Seek out leaders who believe in you. By devoting these next 30 days to doing whatever it is you do best, we can’t guarantee success. We can assure that by ‘Empowerment Day’, (the 30^th of this month) you’ll feel better about yourself, and hopefully want to work harder towards your recovery.

Gerald Butler

Peer Support Specalist

DCW Calls for an End to Management-Sanctioned Discrimination

Licensed Nursing Assistant Patti Green just notified me about a strong piece she’s written about a widespread and little-discussed problem: racial discrimination against direct-care workers in long-term care and the role management plays in allowing it.

“Under the guise of resident/patient rights, aides of color are constantly victims of resident harassment and disrespect. Management bars these aides from caring for said residents - and this leads to resentment and bad morale among all the aides,” she writes in The Quiet Discrimination.

This is an issue that everyone who cares about the quality of direct-care jobs needs to be aware of. As Patti said in her email, this industry-wide pattern of discrimination is “an important issue and one more reason why many aides just leave the work.”

Leavitt: Bush would approve delay of two Medicaid regulations

The Bush administration would accept a moratorium on two of seven proposed Medicaid regulations, Department of Health and Human Services Secretary Mike Leavitt said this week.

Speaking Tuesday, Leavitt said that the president would be willing to delay a rule on reimbursement for graduate medical education (GME) and a regulation curtailing the use intergovernmental transfers (IGT) to healthcare facilities, including nursing homes. The plan so far has the support of only 14 Republican senators, according to the Bureau of National Affairs. It would delay the GME and IGT rules until August, with a possibility of further delays until March 2009. The IGT regulation is considered one of the harshest regulations for nursing homes.

The Congressional Budget Office estimates that not implementing the seven Medicaid rules could cost more than $42 billion to federal taxpayers over the next 10 years, according to BNA. Other reports, however, have shown that the seven rules, if imposed, would cost roughly $50 billion to the states over five years. A one-year moratorium on the seven rules has already passed the House with a veto-proof margin, though it is not clear if the Senate can accomplish a similar feat.

ADAPT's 10 best and worst

For Immediate Release
April 29, 2008

For information contact:
Bob Kafka 512-431-4085
Marsha Katz 406-544-9504
http://www.adapt.org


ADAPT Announces 10 Best and Worst States for Community Services


Washington, D.C.--- In the plaza of the Hall of the States, ADAPT
announced the 2008 Ten Best and Ten Worst States in the delivery of home
and community services to people with disabilities and older Americans.
The Hall of States building is home to the National Governors Association,
an organization that has been very vocal in recent years about the
preference of community services over nursing homes and other
institutions, yet has not been able to inspire its own members to improve
their provision of those services.


Speakers representing states inB both the best and worst categories spoke
at the press conferenceB about the horrors of nursing home life and the
joys of living in the community in those states that provide good
community services. Randy Alexander from Tennessee ADAPT and LaTonya
Reeves from Colorado ADAPT also spoke of the
disability-underground-railroad that assists people in states without
community services to move to states where they can live quality lives in
their own homes with the supports and services they need.


The grouping of states into the top and bottom tenB was based on publicly
available data from highly respected researchers, supplemented by the
results of an informal survey widely distributed across the country by
ADAPT. As has so often been the case over the years, there were few
surprises. Many of the ten states doing the poorest job of providing
services that allow citizens to receive long term care in their own homes
in the community have been on the "worst" list over and over.


The states are listed alphabetically, not ranked numerically;


TEN BEST STATES
Alaska Colorado
Maine Massachusetts Michigan Minnesota
New Hampshire
Oregon
Rhode Island
Vermont


HONORABLE MENTION
Kansas
New York
Washington
Wisconsin
Wyoming

TEN WORST STATES
Arkansas Georgia Florida Illinois Indiana
Louisiana
Mississippi
North Dakota
Tennessee
Texas


DISHONORABLE MENTION
Alabama
District of Columbia
New Jersey
Ohio
Pennsylvania


"No state is ideal, and no state is all bad in how it provides home and
community services," said Bob Kafka, ADAPT National Organizer. "This, as
always, is simply a snapshot based on current information from the Kaiser
Commission, the Research and Training Center on Community Living at the
University of Minnesota, Thomson Healthcare, and our survey. People are
welcome to email me at bob.adapt@sbcglobal.net for more information."

# # #
FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org/

ADAPT in Washington

For Immediate Release May 1, 2008

For information contact:
Bob Kafka 512-431-4085
Marsha Katz 406-544-9504
http://www.adapt.org


Disability Rights Advocates Challenge McCain and Republicans on Lack of
Support for Community Choice Act: McCain's Office Responds by Arresting
Over 40


Washington, D.C.--- ADAPT took over the offices of Sen. John McCain and
the Republican National Committee Tuesday, demanding support for the
Community Choice Act (S799, HR1621) from the only presidential candidate
who has thus far not signed on as a co-sponsor. What they got for their
efforts were arrests, excuses, and statements about how the National
Republican Committee doesn't have the power to call its own presidential
candidate to ask for a meeting.


"I don't get it," said Cassie James, an Organizer with ADAPT of
Pennsylvania, "Sen. McCain's website says 'There is no cause greater
than protection of human dignity.' We were at his office asking him to
partner with us to protect OUR human dignity by supporting legislation
that allows all older and disabled Americans to live in their own homes
instead of being forced into nursing homes where all dignity and personal
privacy are lost. This is not rocket science; it's basic human and civil
rights!"


About 250 ADAPT activists filled Sen. McCain's office in the Russell
Senate Building and the halls just outside the office. A few blocks away
another 250 ADAPT activists stormed the offices of the Republican National
Committee (RNC), with 5 wheelchairs gaining entry, and the remainder
blocking all the doors and driveways. There was a nine hour standoff into
the night, during which the RNC staff refused access to the bathroom for
the ADAPT members who were in the building. The main ADAPT demand was that
the RNC assist to schedule a meeting with Sen. McCain where ADAPT
representatives could talk about support for the Community Choice Act. The
RNC staff repeatedly stated that they did not have the power to call their
candidate's campaign staff to ask for such a meeting.

"I find it very hard to believe that the organization that raises so much
of the funding for the presidential campaign can't talk to its own
candidate," said Randy Alexander, Tennessee ADAPT Organizer, who was
trapped inside the RNC building for nine hours and not allowed to use a
bathroom. "We weren't asking them to guarantee a meeting, just to pick up
the phone, call Sen. McCain, and try to get a meeting set up. Any person
on the street could make that call, yet they said they didn't have the
power to do that."

During the nine hours ADAPT spent trying to gain cooperation from the RNC,
many Congressional co-sponsors and supporters of the bi-partisan Community
Choice Act came by to personally meet some of the people affected by this
important legislation and to congratulate their efforts to get it passed.
The 500 ADAPT activists in Washington this week from nearly every state in
the union represent thousands more ADAPT members back home who don't have
the ability travel to the nation's capitol, a very expensive destination,
to make their voices heard. And those thousands of ADAPT members
nationally are only the tip of the disability voting bloc nationally, a
voting bloc that is currently feeling disrespected and ignored by Sen.
McCain and the Republican Party.

# # #
FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org/