LTC Must Be Placed on Candidates’ Radar Screen

Published in the Woonsocket Call on May 29, 2016

Presidential candidates might just think twice about their political campaign positions on long-term care. With the graying of nation’s voters, Congress will be pushed to put long-term care on its policy agenda. When the dust settles after the Democratic and GOP conventions, the winning candidates must address long-term care issues in their debates before the November election.

In 2013, America’s age 65 or older population made up only 14 percent of the total population, but by 2040, this demographic group will nearly double to comprise about 22 percent. According to the U.S. Department of Health and Human Services the majority of these individuals will require some form of long-term care services (specifically, help with activities of daily living—such as cooking, bathing, or remembering to take medicine—that can be provided in a home or institutional setting.)

Misconceptions About Medicare and Social Security

Survey results in a 17 page report, “Long-Term Care in America: Expectations and Preferences for Care and Caregiving, released by Associated Press (AP)-NORC Center for Public Affairs Research, notes that most older Americans expect Medicare and Social Security to pay for long-term care services while these federal programs generally do not. The survey findings also indicate that respondents, age 40 and over, strongly supported public policies that help a person save for long-term care services and for those that defray the cost of care giving, including state paid family leave programs.

“This survey provides much-needed data on how people perceive the issue of long-term care in the United States,” says Trevor Tompson, director of The AP-NORC Center, in a statement released on May 16, 2016 with the survey findings… “The need for long-term care services and support to assist seniors with activities of daily living is increasing exponentially. Financing high-quality services so that the costs are manageable for families and governments will remain a big challenge for decision-makers,” he added.

“Older Americans of today and tomorrow have a 50 percent chance of living with substantial and often expensive daily needs,” adds Dr. Bruce A. Chernof, President and CEO of The SCAN Foundation. “Medicare and Social Security were not built to cover long-term care, leaving American families unprotected, and as the survey shows, unaware of this fact,” he says.

The AP-NORC survey found that while older Americans’ confidence in being financially prepared to pay for long-term care services remains low overall, there has been a slight increase in public confidence over the past four years, consistent with other measures of consumer confidence post-recession, according to the Consumer Confidence Index. In 2013, 27 percent reported feeling very or extremely confident in their ability to pay for long-term care, increasing to 29 percent in 2014, 32 percent in 2015, and 36 percent in 2016.

The polling finds reveal that a widespread misconception as to what Medicare covers for long-term care services. Older respondents, with an annual household incomes less than $50,000, are more likely to expect to rely on government programs such as Social Security, Medicare, and Medicaid, while those with higher incomes expect to rely more on personal savings to pay for their needed long-term care services. Still, 3 in 10 of these wealthier older Americans report that they will rely on Medicare to support their care as they age. This reflects common misperceptions among older Americans about the long-term care services that Medicare covers, notes the AP-NORC survey.

Thumbs Up to Aging in Place

Seventy seven percent of the survey respondents would prefer to “age in place” and receive care in their own home, w with far fewer preferring to receive care in a senior community (11 percent), a friend or family member’s home (4 percent), or a nursing home (4 percent). Among those respondents who prefer to receive care at home, there are gender differences in preferences for who provides that care: men would prefer to receive care from a spouse (51 percent vs. 33 percent), and women would prefer to receive care from their children (14 percent vs. 35 percent).

There is widespread support for policies to help caregivers face the costs of providing long-term care, with 72 percent supporting state programs to provide paid family leave, 83 percent supporting tax breaks for caregivers, and 73 percent supporting a Social Security earnings credit for caregivers taking time out from the workforce to provide care.

According to the AP-NORC survey, forty-three percent of the survey respondents have either been caregivers in the past or currently providing long-term care to a family member or close friend. Among those with experience as caregivers, 4 in 10 report having to miss work to provide care.

The researchers found that prior experience with long-term care is associated with greater support for several public policies to help people finance long-term care and to help alleviate costs for caregivers. These individuals expressed higher levels of concern about aging and are more likely to anticipate that it is at least somewhat likely that a loved one will need care in the next five years, compared to those without direct care giving experience.

Finally, one-third of the survey respondents reported having done no planning at all for their own long-term care needs. This 2016 finding is similar to the 31 percent who said the same in 2015 and remains lower than the 47 percent and 44 percent who said they had done no planning in 2014 and 2013, respectively.
One Size Does Not Fit All

Meghan Connelly, Chief Program Development at Rhode Island’s Division of Elderly Affairs, provides some thoughts about the findings of the AP-NORC survey. “Long-term care options are not “one-size-fits-all”. In Rhode Island, there are a number of choices one can make, ranging from living independently and receiving care at home to nursing home care. This report highlights that consumers want options when it comes to making these decisions for themselves, or assisting loved ones with long term care choices,” she says…

Connelly adds, the AP-NORC survey “supports the findings of past research: that the overwhelming majority of people want to receive long term care services at home,” noting that in the Ocean State there are many home- and community-based care options. She says that”home care may be available through a physician’s office; at the time of discharge from a hospital or nursing home; or through referrals to state-subsidized programs administered by agencies under the Executive Office of Health and Human Services.”

“The AP-NORC survey also underscores the need to adopt progressive financial policies that support family caregivers who provide the greatest percentage of needed long term care to their elderly or disabled loved ones at home,” warns Connelly.

Greg Crist, Senior Vice President of Public Affairs at the Washington, D.C.-based American Health Care Association (AHCA), notes, “This data generally tracks what our own research has shown: Americans don’t think of this topic every day, and honestly, this is a topic they’d rather avoid. No one likes the thought of aging, and with that aging, the increasing likelihood they will help in their later years. No one welcomes a loss of independence. But here’s the good news – the sector is adapting and innovating.”

Crist asserts nursing homes are meeting the challenge of caring for aging baby boomers. “We’re meeting the growing demands of Boomers, particularly as clinical needs grow, but also in offering amenities such as custom dietary menus, social media communities, and personal rehab care plans that speed recovery times. Whether in Rhode Island or elsewhere, this is an evolving health practice, recognizing that change is needed to meet the new preferences of older Americans,” notes Crist.

Listen to the Older Voters

The AP-NORC survey findings mirror other “long-term care perception” studies released by AHCA and AARP. Democratic presidential candidates Hillary Clinton, Bernie Sanders, and GOP standard bearer Donald Trump must not forget the needs of America’s exponentially growing older population. These older voters do not want to fall through the nation’s public policy safety net when they require the most assistance, paying for costly long-term care services. As the survey report notes, older Americans strongly support Family Leave programs and also call for government administered Long Term Care Insurance programs.

For a copy of the report go to http://www.longtermcarepoll.org/Pages/Polls/long-term-care-in-america-expectations-and-preferences-for-care-and-caregiving.aspx..

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RI’s State Alzheimer’s Plan Won’t Sit on Dusty Shelf

Seeing a huge rise in Alzheimer’s Disease over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Furthermore, national health care costs are spiraling out of control, says the nonprofit group’s Facts Sheet. By 2050, it’s estimated that the total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s Disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

In July 2013, with the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention released a 56 page report that called for public health officials to quickly act to stem the growing Alzheimer’s crisis. .

Battle Plan Against Alzheimer’s Disease

The State’s Plan to battle Alzheimer’s Disease is the culmination of a yearlong effort co-chaired by Lt. Governor Elizabeth Roberts and Division of Elderly Affairs Director Catherine Taylor, in partnership with the state chapter of the Alzheimer’s Association.

Much of the research and writing was conducted by six subgroups (Caregivers, Access, Legal, Workforce, Long-Term Care, and Care Delivery & Research) formed to identify and tackle the many challenges that Alzheimer’s disease poses to individuals, their families and to the health care delivery system. .

At their meetings, the subgroups drew upon the expertise of staff at the Geriatric Education Center at the University of Rhode Island, the Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, and the Norman Price Neurosciences Institute and the Alzheimer’s Prevention Registry

Public input was crucial in the development of the State Plan. Eight listening sessions were held across the Ocean State, two of them held with Spanish translators, at public libraries and local YMCAs, to get the opinions of those with the cognitive disorder, caregivers, and health care professionals. The probate judges association, law enforcement and other groups with unique perspectives on Alzheimer’s Disease were invited to listening sessions, too. Finally, the draft plan was made available for a ten-day public comment as part of the extensive outreach process.

The narrative in each section, nicely pulled together by Lindsay McAllister, the Lt. Governor’s Director of Health Policy, reflected many of the concerns and challenges identified by many presentations and discussions in each of the subgroup meetings over several months. The State Plan details 30 pages of recommendations outlining solutions and specific steps to be taken for preventing and caring for persons with Alzheimer’s Disease for six identified areas.

A Sampling of Recommendations

The plan encourages the development of social media networks as resources for caregivers, also calling on utilizing existing caregiver newsletters to detail more information about the Ocean State’s specific programs and services. It also calls for better training and education opportunities (for young children) to help them understand the devastating disorder and the creation of a two-week certification program, offered by local colleges and universities with input from the state’s Alzheimer’s Association.

In addition, the plan recommends the timely dissemination of research findings and best practices in nursing facilities, dementia care units, and home care to providers and families. Meanwhile, recommendations note the need to standardize dementia training and educational programs as well as the certification of facilities that offer dementia-specific care so that individuals and families impacted by Alzheimer’s Disease can rely upon high quality “dementia capable” care that they can find more easily.

The plan pushes for all Employee Assistance Programs (EAPs) to receive information about referral resources for employees requiring more intensive or long-term mental health services. EAP’s might also provide educational and informational resources on caregiver support for families dealing with Alzheimer’s disease.

Another key recommendation is the development of an internet resource referred to as the Rhode Island Alzheimer’s Disease (RIAD) Web Site. The site would enable better coordination among researchers and clinicians and assist them in recruiting participants for clinical trials and research studies. It would also provide consistent centralized support to individuals living with Alzheimer’s and their families by making practical care giving information readily and easily available.

“AARP has a long history of supporting Alzheimer’s patients and their families,” said AARP Rhode Island Advocacy Director Deanna Casey. “We applaud the effort in Rhode Island and Lt. Gov. Roberts’ efforts on behalf of those who suffer from the disease,” she says.

Casey says “far too many of our nonprofit’s 130,000 Rhode Island members are painfully familiar with Alzheimer’s, and the work of the many stakeholders in this effort is further indication of the great need to recognize our collective responsibility to help families through what is a most challenging journey.”

“Rhode Island has a tremendous opportunity to be a national leader in response to this disease,” she believes.

Briefing by Key Supporters

Two days ago, the full Alzheimer’s Work group kicked off the implementation phase of the Rhode Island State Plan on Alzheimer’s Disease & Related Disorders, discussing how to move forward with the goal of getting the recommendations up and running.

In Room 116 at the State House, Lt. Governor Elizabeth Roberts and Director Catherine Taylor of the Division of Elderly Affairs were clearly pleased to see their year-long initiative moving into its implementation phase to assist the State to handle a growing number of persons with Alzheimer’s Disease.

On the heels of a nationally released plan to address the Alzheimer’s epidemic, Taylor tells me that it was “great timing” for the Rhode Island General Assembly to enact a joint resolution to create a state plan to “respond to Rhode Island’s specific needs and gaps of service.” She credits the Rhode Island Chapter of the Alzheimer’s Association with the getting the ball rolling on this major health care policy initiative.

According to Lt. Governor Roberts, public sessions where care givers and people with Alzheimer’s Disease told their personal stories allowed the Subgroups to understand the personal impact of the devastating disease on both the afflicted and caregivers. For instance, the listening sessions made it very clear that the specific care needs of middle age adults with early onset Alzheimer’s Disease is quite different from those who are decades older, she said. Taylor agreed, citing adult day care eligibility requirements which keep those under age 60 from participating in this program, one that provides respite care to caregivers.

Lt. Governor Roberts states “younger people can not relate to programs that are developed for older people.” The patient must become the center of treatment rather than the treatment geared to age, she says.

Both Lt. Governor Roberts and Taylor do not want to see the State Plan sit on a dusty shelf, noting that it now becomes important to implement the written plan’s recommendations. “Let’s get the ball rolling now,” says Taylor.

While many of the State Plan’s recommendations may take time to implement, some are easy to implement like a Spanish language support group, says the Lt. Governor. Taylor states that RI has already requested a modification to the Medicaid waiver to expand Adult Day Health Center eligibility to individuals younger than 60 who have a diagnosis of Alzheimer’s.

Senior Police and Fire Advocates need to be trained in every Rhode Island community about Alzheimer’s Disease and resources available for caregivers, states Taylor. “These individuals know those who need programs and services in the community,” she notes, adding that an information conference is scheduled this week to train these individuals.

Lt. Governor Roberts believes that the State plan is a “living document” and it will be around as long as there is one person with Alzheimer’s Disease.”

To review the State plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

Herb Weiss, LRI’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.

Gridlock Threatens Elder Programs, Services

Published in Pawtucket Times, October 11, 2013

At press time, this week continued heated partisan bickering on Capitol Hill that threatens to unravel a fragile economy, along with putting the brakes to an economic upturn that slowly was pushing the nation out of its financial doldrums. With this stand-off, a partial shutdown of the federal government continues. The Republican-controlled House, captured by the ultra-right Tea Party, has refused to budge, opposing the passage of a continuing resolution (CR) to fund government agencies past Sept. 30. House Republican leadership has demanded that passage of the CR must be tied to either the repeal or partially dismantling of President Obama’s signature achievement, the Affordable Care Act. The Democratic President along with a Senate Democratic leadership say no.

Meanwhile, the Democratic-controlled Senate passed a “clean” CR to provide funding through Nov. 15, not putting ACA on the GOP’s chopping block. Even if both legislative chambers sort out differences and hammer out a compromise agreement to open the doors of the federal government, this would not shield the nation from the disastrous impact of the impending second round of sequester cuts and a Oct. 17 deadline for the government to raise the debt ceiling. No action means a first-ever default on the nation’s debt that could send the stock market tumbling and push the nation’s and the world’s economy into a tailspin.

Treasury officials say that congressional deadlock and no action will result in the federal government running out of cash to pay its bills if Congress does not act to raise the nation’s debt ceiling this month.

Get Your House in Order

With the debt crisis looming, AARP Executive Vice President Nancy LeaMond called on Congressional lawmakers to settle the debt ceiling debate to avoiding default on the nation’s debt, specifically to protect the retirement of seniors and future generations.

In her letter, LeaMond expressed concern that any delay in raising the nation’s debt limit may unnecessarily increase borrowing costs, negatively impact retirement savings accounts and harm the nation’s fragile economy.

“Our members are worried that the benefits they have earned may be cut as part of a deal to reduce the deficit, fund government operations, or increase the debt ceiling, and they are increasingly worried that if there is no agreement very soon, they may not receive their Social Security checks and may lose access to their health care,” noted LeaMond.

Ten days ago, the nation entered a government shutdown, forcing furloughs of 800,000 workers, without pay, and suspending services. The last time this occurred was 17 years ago during the Clinton administration. The Congressional impasse has closed national parks and monuments, federally owned museums, such as the Smithsonian, offices overseas that give visas to foreigners hoping to visit the United States, and even many federal regulatory agencies.

So, how does this impact programs and services for older Americans? Simply put, impact on programs and benefits may vary throughout the federal bureaucracy.

The U.S. Department of Health & Human Services will furlough over 40,512 of its 78, 198 employees. The largest percentage of these employees comes from “grant-making and employee-intensive agencies,” such as the Administration for Community Living. This federal agency would not be able to fund the Senior Nutrition programs, Native American Nutrition and Supportive Services, Prevention of Elder Abuse and Neglect, the Long-Term Care Ombudsman program, and Protection and Advocacy for persons with developmental disabilities.

As reported, Social Security checks will be mailed, Medicare and Medicaid benefits will continue to be paid out, because these are considered mandatory programs, not discretionary ones. Benefits under the Supplemental Nutrition Assistance Program, commonly referred to as food Stamps, will continue in October, despite the federal shutdown.

Food Program Takes Budgetary Hit

Jenny Bertolette of the Meals on Wheels Association of America charges that the Federal Government shutdown “adds insult to injury as Senior Nutrition Programs are already dealing with devastating cuts due to sequestration, funding that has never kept up with inflation, increased food and transportation costs and increased need as significantly more seniors are aging and struggling with hunger than ever before.”

Bertolette says that should a shutdown persist for any considerable length of time, local Meals on Wheels programs that rely on government funding could experience a delay in reimbursements for meals and services delivered. Facing such funding uncertainty, programs could be forced to suspend meal services, create or expand waiting lists for meals, cut the number of meals or days they serve and reduce delivery days.

Jenny Bertolette of the Meals on Wheels Association of America charges that the Federal Government shutdown “adds insult to injury as Senior Nutrition Programs are already dealing with devastating cuts due to sequestration, funding that has never kept up with inflation, increased food and transportation costs and increased need as significantly more seniors are aging and struggling with hunger than ever before.”

Bertolette says that should a shutdown persist for any considerable length of time, local Meals on Wheels programs that rely on government funding could experience a delay in reimbursements for meals and services delivered. Facing such funding uncertainty, programs could be forced to suspend meal services, create or expand waiting lists for meals, cut the number of meals or days they serve and reduce delivery days.

Heather Amaral, Executive Director of Meals on Wheels of Rhode Island, agrees, noting that her Providence-based nonprofit program, has already lost $70,970 in 2013 federal funds due to last year’s sequestration cuts.

Amaral says that as a result of these cuts, to maintain meal delivery at the same numbers as last year (360,299 meals), she had to reduce menu items that were once offered. “Although the government shutdown doesn’t have an immediate impact on our program, I am concerned that it could lead to additional cuts,” she says, noting that should the shutdown continue until year end, the nonprofit agency will be forced to rely on donations and reserves to maintain service levels.

“We provide a safety check along with each home delivered meal and are often the only contact our client has that day, adds Amaral, who stresses that her program may be the only thing keeping a senior at home. “If we are forced to reduce the number of meals we serve, these people may be forced to live with a family member or enter a nursing home,” she warns.

Meanwhile, the U.S. Housing and Urban Development (HUD) agency will be unable to fund additional payments to public housing authorities, many providing shelter to older Americans. HUD expects the 3,300 Public Housing Authorities it funds to have enough funding to get through the month of October. But, if the shutdown continues, some public housing authorities will not be able to maintain normal operation.

Also, Quarterly formula grants will not go out for the Low-Income Home Energy Assistance Program (LIHEAP), the Social Services Block Grant (SSBG), or the Community Services Block Grant (CSBG).

Nutrition programs serving older adults face a double whammy with no FY14 appropriations and no reauthorization of the Farm Bill. The Senior Farmers’ Market Nutrition Program expired along with the Farm Bill on Sept. 30. The Commodity Supplemental Food Program (CSFP) requires appropriations to continue operating.

According to well-known Aging Advocate Susan Sweet, this is a partial shutdown that hasn’t really hit aging programs yet. There are funding reductions in programs for older people, but that is due to the sequester, which will have another round of cuts in October, she says.

Sweet predicts that the negative effects of the shutdown itself will become worse with every passing day. For example, there is doubt that veterans benefits and social security will be paid in or after October absent a funding bill. Death benefits, including burial subsidies, have not been paid to the survivors of fallen armed forces members, she notes. Because of the public outcry regarding this outrage, a private charity has stepped up to pay the benefits with the promise of reimbursement when the government re-opens.

“Reduced to its true absurdity, the United States of America has lost the ability to rationally govern,” states Sweet. “The sequester cuts, previously characterized as “cuts for dummies”, have been implemented, we are in a war yet cannot bury our dead from that war, can’t even agree on a temporary fix, and are arguing whether the US should pay its bills or default,” she adds.

“It is perplexing, and we have heard many, many concerns from Rhode Island members, “ said AARP State Director Kathleen Connell. “Since the U.S. government has never failed to meet its financial obligations, we don’t know what payments it could make if the President and Congress fail to reach an agreement.

“One cannot help but wonder what effects this uncertainty has on people – many of whom struggle enough with health and financial issues,” Connell added. “We’re doing whatever we can to urge Congress and the President to act responsibly.”

Herb Weiss, LRI ’12, is a Pawtucket-based writer covering aging, health care and medical issues. His weekly commentaries can be found on his blog, herbweiss.wordpress.com. He can be reached at hweissri@aol.com.