Category Archives for Caregivers

Can Our Nation Survive Trump and the GOP’s Control of Capitol Hill?

Published in Woonsocket Call on January 8, 2017

Almost two months ago when GOP presidential candidate Donald Trump trounced his Democratic challenger Hillary Clinton and his party took control of both chamber of Congress. Trump’s surprising victory stunned both voters and political commentators and pundits covering the heated presidential race. According to a November 16, 2016 Gallup Poll, 80 percent of Trump’s voters are “excited,” while 76 percent of Clinton’s voters say they are “afraid.” A large majority of the respondents (75 percent) shared one reaction: “surprise.”

Days after the tumultuous election, Darrell M. West, vice president and director of Governance Studies at the Washington, D.C.-based the Brookings Institution, penned his thoughts about how president-elect Trump might govern the divided nation. His posting, “Four Scenarios for a Trump Presidency,” can be found on the Brooking’s FixGov blog, written on November 14, 2016.

Speculating on Trump’s White House Governance

In his 1,286 word blog, West, an American author, political scientist, pollical commentator who formerly taught political science at Brown University for 26 years, says that Trump might choose to govern as a traditional Republican endorsing tax cuts, deregulation and repealing Obamacare. Like other GOP politicians he would call for reinstituting law and order, fighting ISIS and other extremist militant groups, and controlling illegal immigration from coming into this country. “These typical GOP positions might resolve his philosophical differences on “entitlement reform and free trade,” says West, an author or co-author of 22 books.

Trump just might even turn over the reins of the presidency to Vice President Mike Pence, House Speaker Paul Ryan, and Chief of Staff Reince Priebus, says West, these individuals “becoming the de facto prime minister.”

According to West, like president-elect Trump did during the presidential campaign, he might take on the role of a “popular rogue.” A “populist Trump could break conventional political rules and “attack the political establishment to represent the little guy,” notes West’s blog posting.

West also suggests that Trump might ultimately fail as president. After all he lost the popular vote by 2 percentage points or nearly three million votes and alienated women, millennials, minorities and immigrants with his insulting comments. Scandals and disclosures about his personal behavior and continuing concerns about serious financial conflicts of interest could derail his “honeymoon” phase at the beginning of his presidential term and negatively impact his popularity ratings, he says.

West also speculates in his blog that policy backlashes due to millions losing health care coverage by his push to repeal Obamacare, privatizing Medicare or gutting Social Security, a slow-down in the economy or even Trump’s continued liking of Russian President Vladimir Putin, might make him a one term president, like President Jimmy Carter.

Finally, public outcry and violent protest may turn Trump into an authoritarian leader. If this happens West expresses concerns smear campaigns (waged by White House Strategist Steve Bannon), the use of federal agencies to “attack adversaries” and the use of local police to “crack down” on protestors. “Firing top intelligence officials would suggest that Trump wants compliant people who will do his bidding against foreign and domestic adversaries,” he says.

Big Changes with the GOP in Charge

“It is a scary time in American politics,” says West, who expects to see big changes on Capitol Hill in 2017. The Brookings political pundit predicts that a Trump White House with a GOP controlled Congress will tackle large tax cuts, corporate tax reform, repealing Obamacare (but not having anything to replace it with), and reversing the Dodd Frank financial regulation bill. With the Republicans controlling both chambers of Congress he does not expect gridlock during the first six months of the 115th Congress.

West predicts that in the long-run many of the GOP president and Republican Congressional leadership policy initiatives will be problematic. “They are governing as if they have a clear mandate even though they lost the popular vote, he says.

West, like some political observers, expect many of the GOP’s conservative policy proposals to hurt the people who voted for Trump. The tax cuts go disproportionately to the top one percent and proposed changes in Medicare and Medicaid will limit medical care, he said.

“In a couple of years, the economy probably will be much weaker than it is today, which will undermine the very rationale of Trump’s candidacy,” says West, noting that if this happens the newly elected president could have a 30 percent job approval rating by 2018. “Of course, that is when he really will become dangerous! The risk is he may try things to improve his poll numbers, such as identifying scapegoats or confronting adversaries,” warns West.

“GOP Congressional leaders have plans to privatize Medicare and block grant Medicaid to the states. This will impose limitations on medical care and make it more difficulty for needy people to get the help they need,” adds West, who also sees Republicans moving to reduce home care and medical assistance to America’s elderly.

West sees the “GOP legislative initiatives as being very contentious politically, and will reinforce perceptions of the GOP as cold and heartless [to Americans].”

“Democrats will not be able to pass legislation. Their main power will be trying to block things they don’t like or stop nominations at confirmation hearings that they find problematic,” says West, noting that they will be put in a defensive posture. “They will seek to protect certain gains made during the Obama administration. However, Congressional Democratic leadership may well be able to work together on infrastructure investments,” he says.

West believes that Trump’s fix for the economy will not work. “In the longer-run, there is a risk that inflation will go up. Interest rates already have risen in anticipation of this,” he says.

“The market is expecting Trump to spend a lot of money and not be able to corral spending by the same amount. That will increase deficits and drive up inflation. It will be hard to blame this on Democrats since there has been low inflation for years now. It will be pretty obvious that GOP policies are responsible for the rate increases,” West adds.

Democrats Mobilize, Video Sends Message to Congress

As president-elect Trump’s inauguration approaches, President Obama traveled to Capitol Hill last week to urge Congressional Democrats to block the GOP president and the Republican Congressional leadership’s efforts to dismantle Obamacare, the outgoing president’s signature healthcare reform law and to fight their legislative policy initiatives. Behind closed doors Obama urged Democratic lawmakers to not “rescue” the Republicans by passing replacement measures. He suggested calling the GOP’s new plan, “Trumpcare,” to ensure that they are held responsible for any disruptions in health coverage. At press time there seems to be no GOP health care plan to consider.

After Obama’s meeting Democrats lawmakers have begun using the phrase, “Make America Sick Again, tying into Trump’s wildly recognized campaign slogan, “Make America Great Again.”

Hollywood is moving to block Trump’s policy initiatives. Almost a week ago documentarian Liz Garbus unveiled her one minute and 49 second video (#StandUpForUS), released by Humanity for Progress, to urge Congress to block any legislative initiatives pushed by Trump and his GOP allies that attack groups he marginalized during last year’s presidential campaign. Celebrities and activists lined up to participate in this video. They included Rosie Perez, Keegan-Michael Key, Tavi Gevinson, Lea Delaria, Sally Field, Steve Buscemi, Zoe Kazan, Jeffrey Wright, and Janet Mock, among others.

“The majority of Americans, regardless of who they voted for, did not vote for racism, for sexism, or for xenophobia. And yet Donald Trump won,” notes the video. At the end of the video, viewers are asked to email the video to members of Congress, as well as to sign a petition on http://www.MoveOn.org, to resist Trump and the GOP agenda,

Stay Tuned

The aftermath of the 2017 presidential election has politically split our nation. Although Trump won the Electoral College, Clinton, the former secretary of state, pulled in over 64 million votes. Even without a clear legislative mandate President-elect Trump and Republican Congressional leadership are moving at a quick pace to make major policy and systemic changes during the first 100 days of the 115th Congress. Democrats are now forced to play the loyal opposition for the next four years and fight against GOP policies rammed through the legislative process. Will GOP legislative fixes push American in the right direction? Or will the nation survive these changes? Stay tuned.

Report Hones in on Caregiving Costs

Published in Woonsocket Call on November 20, 2016

On the last day of October, a 537 word proclamation issued by President Barack Obama proclaimed November 2016 as National Family Caregiver (NFC) month. In this official decree the president encouraged the nation to pay tribute to 90 million caregivers who work tirelessly care for family members, friends, and even neighbors.

Obama recognizing the nation’s caregivers came about through the lobbying efforts of Caregiver Action Network (the National Family Caregivers Association). The Washington, DC-based group began its efforts to nationally recognize family caregivers in 1994. Three years later, President Clinton signed the first NFC Month Presidential Proclamation and every president since that time has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November.

On the heels of Obama’s signed proclamation comes the release of a new AARP report that details the out-of-pocket cost of caregiving. According to researchers, family caregivers spend an average of nearly 20 percent of their income providing care for a family member or other loved one. Along with increased out-of-pocket (OOP) expense, the study also explores other financial and personal strains that family caregivers may experience as result of their caregiving activities.

The Financial Strain of Caregiving

AARP’s 56 page research report “Family Caregiving and Out-of-Pocket Costs: 2016 Report,” noted that caregivers spend an average of $6,954 in OOP costs related to caregiving, with Hispanic/Latino and low-income family caregivers spending an average of 44 percent of their total annual income.

“This study spotlights the financial toll on family caregivers – particularly those with modest incomes,” said AARP Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “Whether helping to pay for services or make home modifications, the costs can be enormous and may put their own economic and retirement security at risk. As a nation, we need to do more to support America’s greatest support system. Passing the bipartisan Credit for Caring Act that provides a federal tax credit of up to $3,000 would give some sorely needed financial relief to eligible family caregivers.”

AARP’s report, released November 14, 2016, determined the amount of money that family caregivers spent over the last year providing help or assistance to a loved one. Certain groups of family caregivers spend disproportionately more in OOP expenses, said the researchers.

AARP’s report, prepared by Chuck Rainville, Laura Skufca and Laura Mehegan, noted that family caregivers of all ages spend $6,954 in OOP costs related to caregiving on average. They are earning less than $32,500 are under significant financial strain, spending an average of 44 percent of their annual income on caregiving.

Family caregivers caring for adults with dementia spend nearly twice the OOP costs ($10,697) than those caring for adults without dementia ($5,758), the AARP report found.

Cultural Diversity and Caregiver Costs

Researchers looked at cultural diversity as it related to OOP expenses of family caregivers. According to their findings, Hispanic/Latino family caregivers spend an average of $9,022 representing 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616 or 34 percent, white family caregivers spend $6,964 or 14 percent, and Asian Americans/Pacific Islanders spend $2,935 or 9 percent.

As expected, long-distance family caregivers had the highest OOP costs at $11,923 compared with family caregivers living with or nearby their care recipients.

The AARP report notes that increased OOP forces family caregivers to dip into savings, cut back on personal their spending, and they save less for retirement. Some must take out loans to make financial ends meet. Additionally, more than half of family caregivers are cutting back on leisure spending and also reported a report a work-related strain such as having to take unpaid time off.

“Many family caregivers experience a great deal of physical, emotional, and financial strain,” added Susan Reinhard, RN, PhD, Senior Vice President and Director, AARP Public Policy Institute. “This report highlights why AARP supports the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act that would require the development of a national strategy to support family caregivers.”

AARP Rhode Island State Director Kathleen Connell says that AARP’s recently released report verifies what most family caregivers know all too well: Providing for a loved one challenges caregivers in many ways and out-of-pocket expenses certainly is one of them, she says.

“In conversations I’ve had with caregivers over the years, I have found most all consider their efforts a responsibility as well as a labor of love. They rarely complain about cost because, I suspect, they try never to characterize caregiving as a burden,” says Connell..

Connell says, “With passage of the CARE Act and its implementation coming in 2017, Rhode Island is among the states leading the way in caregiver support. We cannot rest. You may be a caregiver. You may know a caregiver. You may someday rely on a caregiver. Any way you look at it, you need to be in the conversation about future needs.”

This study of a nationally representative sample of 1,864 family caregivers was conducted by GfK from July 18–August 28, 2016. All study respondents were currently providing unpaid care to a relative or friend age 18 or older to help them take care of themselves.

The full results of AARP’s caregiver report can be found here: http://www.aarp.org/caregivercosts

New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.