Unpaid Caregiver Care Saves State Money

Published in Woonsocket Call on July 26, 2015

With the graying of state’s population, Ocean State caregivers provided 124 million hours of care—worth an estimated 1.78 billion —to their parents, spouses, partners, and other adult loved ones in 2013, according to a new AARP Policy Institute’s report.  The total estimated economic value of uncompensated care provided by the nation’s family caregivers surpassed total Medicaid spending ($449 billion), and nearly equaled the annual sales ($469 billion) of the four largest U.S. tech companies combined (Apple, Hewlett Packard, IBM, and Microsoft) in 2013, says the 25 page report.

AARP’s report, Valuing the Invaluable: 2015 Update, noted that family caregiving for relatives or close friends with chronic, disabling, or serious health problems – so they can remain in their home – is nearly universal today.  In 2013, about 134,000 family caregivers in Rhode Island helped another adult loved one carry out daily activities (such as bathing or dressing, preparing meals, administering medications, driving to doctor visits, and paying bills), says the report issued on July 16.

Log on to AARP Rhode Island’s caregiving Web page (www.aarp.org/ricaregiving) to download the report as well as access information on recent caregiver legislation passed by the General Assembly and other resources: www.aarp.org/ricaregiving.

The Difficulty of Caregiving

The AARP report detailed how caregiving can impact a person’s job, finances and even their health, says the researchers.   More than half (55%) of family caregivers report being overwhelmed by the amount of care their family member needs, says the report.  Nearly 4 in 10 (38%) family caregivers report a moderate (20%) to high degree (18%) of financial strain as a result of providing care. In 2014, the majority (60%) of family caregivers had full- or part-time jobs, placing competing demands on the caregivers’ time.

According to AARP Rhode Island State Director Kathleen Connell, AARP’s study on caregiving affirms the state’s record as a trailblazer in the field of caregiving. In 2013, Rhode Island became just the third state to enact paid family leave, which is known as Temporary Caregiver Insurance (TCI). Also in 2013, Rhode Island enacted the Family Caregivers Support Act, which requires a family caregiver to receive an assessment,” she said.

Connell said that this year the Ocean State remained in the forefront of helping caregivers with passage of the Caregiver Advise, Record, Enable (CARE) Act, which calls for hospitals to provide instruction to designated caregivers. Additionally, Rhode Island became the 42nd state to enact the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act. In Rhode Island, a court-appointed guardian can make important decisions across state lines.

“This new report, however, does demonstrate that we need and can do more to assist the many caregivers in our state,” said Connell. “Some of the ways we can help family caregivers include continuing efforts to improve workplace flexibility, respite care, tax credits and home care services,” she says.

Adds Charles Fogarty, Director of the state’s Division of Elderly Affairs (DEA), “This study demonstrates that the backbone of long-term services and supports are family members and informal caregivers.  Quantifying the hours and economic value of caregiving provided by Rhode Island families and informal caregivers raises public awareness of the impact these services have upon Rhode Island’s health system and economy.  It is clear that there is a significant need to support caregivers who, at a cost to their own health and economic well-being, work to keep their family members in the community.”

DEA works with the state’s Aging Disability and Resource Centers and local nonprofits and agencies such as the RI Chapter of the Alzheimer’s Association, Office of Catholic Charities of the Diocese of Providence, local YMCAs and Adult Day Care programs, to provide programming, support groups and information to Rhode Island’s caregivers, according to Fogarty.  “Rhode Island also requires that a caregiver assessment be conducted when a recipient of Medicaid-funded Home and Community Based Services has a caregiver providing support in the home,” he says.

Improving State Support for Caregiving

            Although Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island acknowledges Rhode Island as being a leader with progressive laws on the books supporting caregivers, specifically the Temporary Caregiver Insurance Program, more work needs to be done.

Maigret calls for better dissemination of information to caregivers about what services and programs are available.  “In this day and age we should have a robust Rhode Island specific internet site that offers caregiving information about state specific resources,” she says, noting that too often caregivers “just do not know where to turn to find out about programs like DEA’s co-pay program.”  This program pays a share of the cost for home care and adult day care for low-income persons whose incomes are too high to meet Medicaid eligibility.

          Rhode Island also falls short in providing subsidies to caregivers of frail low income elderly to keep them out of costly nursing homes, says Maigret, noting that the program’s funding was cut by 50 percent in 2008, creating waiting lists which have occurred over the years, It’s “short sided” to not allocate adequate resources to this program. The average annual cost of $ 1,200 per family for the caregiver subsidy program can keep a person from going on Medicaid, at far greater expense to Rhode Island taxpayers, she says.

          This AARP report must not sit on a dusty shelf.  It gives an early warning to Congress and to local lawmakers.  As Americans [and Rhode Islanders} live longer and have fewer children, fewer family members will be available for caregiving duties. Researchers say that the ratio of potential family caregivers to the growing number of older people has already begun a steep decline. In 2010, there were 7.2 potential family caregivers for every person age 80 and older. By 2030, that ratio will fall sharply to 4 to 1, and is projected to drop further to 3 to 1 in 2050.

With less caregivers in the trenches providing unpaid care to keep their loved one at home, the state will have to step in to provide these programs and services – for a huge price tag to taxpayers.  State lawmakers must not be penny wise and pound foolish when it comes to caregiver programs.  Funding should not be slashed in future budgets, rather increases might just make political sense especially to tax payers.

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

Survey: Older Americans Puzzled About LTC Programs and Services

Published in Woonsocket Call on July 19, 2015

Planning for your golden years is key to aging gracefully.  But, according to a new national survey looking at experiences and attitudes, most Aging Boomers and seniors do not feel prepared for planning or financing their long-term care for themselves or even their loved ones.

This Associated Press (AP)-NORC (NORC) Center for Public Affairs Research study, funded by The SCAN Foundation, explores a myriad of aging issues, including person-centered care experiences and the special challenges faced by the sandwich generation.  These middle-aged adults juggle their time and stretching their dollars by providing care to their parents, even grandparents while also financially assisting their adult children and grandchildren.

Older American’s Understanding of LTC

This 21 page survey report, released on July 9th, is the third in an annual series of studies of Americans age 40 and older, examines older Americans understanding of long-term care, their perceptions and misperceptions regarding the cost and likelihood of requiring long-term care services, and their attitudes and behaviors regarding planning for possible future care needs.

The survey’s findings say that 12 percent of Americans age 40 to 54 provide both financial support for their children and ongoing living assistance to other loved ones.   Federal programs are often times confusing to these individuals, too.   More than 25 percent are unsure whether Medicare pays for ongoing living assistance services like nursing homes and home health aides. About 1 in 4 older Americans also overestimate private health insurance coverage of nursing home care.

Researchers noted that about half of the respondents believe that a family member or close friend will need ongoing living assistance within the next five years. Of those who anticipate this need, 7 out of 10 reports they do not feel very prepared to provide care, they note.

More than three-quarters of those surveyed age 40 or older who are either receiving or providing ongoing living assistance indicate that their care includes at least one component of “person-centered care.”  This approach allows individuals to take control of their own care by specifying preferences and outlining goals that will approve their quality of life.

The survey also finds that most of those reporting believe that features of “person-centered care” have improved the quality of care

Paying for Costly LTC Services

The 2015 survey findings are consistent with AP-NORC survey findings from previous years, that is older Americans continue to lack confidence in their ability to pay the costs of ongoing living assistance.  Medium annual costs for nursing homes are $91,260; the cost for at-home health is about half that amount, $45,760, says the report.

Finally, only a third of the survey respondents say that they have set aside money for their care. More than half report doing little or no planning at all for their own ongoing living assistance needs in their later years.

“The three surveys on long-term care [by AP-NORC] are helping us create a comprehensive picture of what Americans 40 and older understand about the potential need for these critically important services,” said Director Trevor Tompson, at the AP-NORC Center in a statement. “Experts estimate that 7 in 10 Americans who reach the age of 65 will need some form of long-term care, and our findings show that many Americans are unprepared for this reality,” he says.

Dr. Bruce Chernof, President and CEO of The SCAN Foundation, says that the 2015 study takes a look at public perception regarding long-term care and most importantly, how people can plan for future long-term care needs.  “The insight provided by this research is critical because it will help us promote affordable health care and support for daily living, which are essential to aging with dignity and independence.” he says.

AP-NORC’s 2015 study results are validated by other national research studies, says AARP Rhode Island State Director Kathleen Connell.    “AARP’s research, both nationally and state by state, reveals that people in the 50+ population are concerned about the cost of retirement and especially long-term care,” she says, observing that “very few people seem worry free on this question and rightfully so.”

 Beginning the Planning Process

Connell adds, “I would say our response to this survey is that it adds to the awareness that people need to start thinking about this at an earlier age. And that means not only focusing on saving but also getting serious about health and fitness.”

What can a person do to better prepare for paying for costly long-term care and community based services?   “AARP.org has an abundance of information on long-term care. There’s advice on long-term care insurance, a long-term care cost calculator and many other resources. We also need to remain strong as advocates for programs that support seniors. Social Security, Medicare and Medicaid need to remain strong in order to support Americans entering the most vulnerable chapters of their lives,” she says.

Amy Mendoza, spokesperson for the American Health Care Association (AHCA), a Washington, DC-based trade association that represents over 12,000 non-profit and proprietary skilled nursing centers, assisted living communities, sub-acute centers and homes for individuals with intellectual and development disabilities, calls for increased conversations to help planning for potential future need.  “Given that the need for long-term or post-acute care is a life changing event, it demands some considerable thought, discussion and research,” says Mendoza.

“AHCA’s “Care Conversations” program helps individuals have the honest and productive discussions needed to plan and prepare for the future long-term care needs,” adds Mendoza.  Care Conversations has a Planning Tools page on its website which provides information on advance directives. Learn more at: http://careconversations.org/planning-tools.

Todd Whatley, a certified elder law attorney, notes that some of his best clients are middle age adults who after taking care of their parents want to avoid costly nursing home or community based care services.  “They are then suddenly very interested in some type of [insurance] coverage for the extraordinary expense of long term care when a year earlier, they had no interest whatsoever,” he says.

Whatley, President-Elect of the Tuscan, Arizona-based National Elder Law Foundation, suggests contacting a financial planner or Certified Elder Law Attorney when purchasing long term care insurance, “Get early advice from someone with their best interest at heart.  There are many times that a person simply doesn’t need this product financially, but most people do.

To locate a Certified Elder Law Attorney, contact Lori Barbee, Executive Director, National Elder Law Foundation.  She can be reached at 520-881-1076 or by email: Lori@nelf.org.

For a copy of the study, go to http://www.longtermcarepoll.org/Pages/Polls/long-term-care-2015.aspx.

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

 

 

Palliative Care Can Provide Comfort to Dying Residents

Published in Woonsocket Call on May 10, 2015

           A recently published study, by Brown University researchers, takes a look at end-of-life care in America’s nursing facilities, seeking to answer the question, is knowledge and access to information on palliative associated with a reduced likelihood of aggressive end-of-life treatment?

Brown researchers say when a nursing facility resident is dying, oftentimes aggressive interventions like inserting a feeding tube or sending the patient to the emergency room can futilely worsen, rather than relieve, their distress. While palliative care can pull resources together in a facility to provide comfort at the end of a resident’s life, the knowledge of it varies among nursing directors.  A new large national study found that the more nursing directors knew about palliative care, the lower the likelihood that their patients would experience aggressive end-of-life care.

Susan C. Miller, professor (research) of health services, policy and practice in the Brown University School of Public Health and lead author of the study in the Journal of Palliative Medicine, published March 16, 2015, worked with colleagues to survey nursing directors at more than 1,900 nursing facilities across the nation between July 2009 and June 2010.  The researchers hoped to learn more about their knowledge of palliative care and their facility’s implementation of key palliative care practices.

Knowledge Is Power

According to the findings of the Brown study, the first nationally representative sample of palliative care familiarity at nursing homes, more than one in five of the surveyed directors had little or no basic palliative care knowledge, although 43 percent were fully versed.

“While the Institute of Medicine has called for greater access to skilled palliative care across settings, the fact that one in five U.S. nursing home directors of nursing had very limited palliative care knowledge demonstrates the magnitude of the challenge in many nursing homes,” Miller said. “Improvement is needed as are efforts to facilitate this improvement, including increased Medicare/Medicaid surveyor oversight of nursing home palliative care and quality indicators reflecting provision of high-quality palliative care,” she said, noting that besides quizzing the directors the researchers also analyzed Medicare data on the 58,876 residents who died during the period to identify the type of treatments they experienced when they were dying.

When researchers analyzed palliative care knowledge together with treatment at end of life, they found that the more directors knew about basic palliative care, the lower likelihood that nursing facility residents would experience feeding tube insertion, injections, restraints, suctioning, and emergency room or other hospital trips. Meanwhile, residents in higher-knowledge facilities also had a higher likelihood of having a documented six-month prognosis.

The study shows only an association between palliative care knowledge and less aggressive end-of-life care, the authors say, noting that knowledge leads to improved care, but it could also be that at nursing facilities with better care in general, there is also greater knowledge.  But if there is a causal relationship, then it could benefit thousands of nursing facilities residents every year for their nursing home caregivers to learn more about palliative care, the authors conclude.

Progress in Providing End-of-Life Care

Virginia M. Burke, J.D. President and CEO of the non-profit Rhode Island Health Care Association, said, “We were gratified that the authors found that most of the nursing directors who responded to their survey gave correct answers on all (43% of respondents) or most (36%of respondents) of the “knowledge” questions on palliative care.  We were also gratified to see that the number of hospitalizations during the last thirty days of life has declined significantly over the past ten years, as has the number of individuals who receive tube feedings during their last thirty days.  The need for continued progress is clear.”

Burke, representing three-quarters of Rhode Island’s skilled nursing and rehabilitation centers, adds, “It is not at all surprising that greater understanding of palliative care leads to better application of palliative care.”

The states’s nursing facilities are committed to providing person-centered end of life care, says Burke, noting that according to the National Palliative Care Research Center, Rhode Island’s hospitals are among the top performers for palliative care.  “We suspect that our state’s nursing facilities are as well.  We would be very interested in state specific results in order to see any areas where we can improve.”

Says spokesperson Director Michael Raia, of Rhode Island’s Health & Human Services Agency, “We need to provide the right care in the right place at the right time for all patients.”

When it comes to nursing facilities, Raia calls for reversing the payment incentives so that facilities are rewarded for providing better quality care and having better patient outcomes.  He notes that the Reinventing Medicaid Act of 2015 reinvests nursing home reimbursement rate savings into newly created incentive pools for nursing homes and long-term care providers that reward facilities for providing better quality care, including higher quality palliative care.

Bringing Resources to Families

With caregiving one of AARP’s most important issues, it’s no surprise that the organization provides a great deal of guidance on palliative care, stressing that “it involves organizations and professionals coming together to meet a person’s needs both in terms of pain management, along with emotional and spiritual perspectives,” said AARP State Director Kathleen Connell.

Connell says that “It’s is truly a team effort in which nursing home staff become key players. The resources are important to patient with chronic and terminal issues. Their families need help, too. So it is important any time we learn more about ways we can address this very important healthcare need.”

Adds Connell, “In Rhode Island, I’m confident that we have nursing homes that are dedicated to easing the difficulty of this particularly stressful stage of life. They give patients and their families enormous comfort. We certainly applaud their compassion and hope the report is helpful anywhere it identifies a need for improvement,” adds Connell.

AARP’s Caregiving Resource Center (http://www.aarp.org/home-family/caregiving/) includes an End of Life section. Check out a specific palliative care resource at  http://assets.aarp.org/external_sites/caregiving/multimedia/EG_PalliativeCare.html

To read the Brown Palliative Care Study go to http://online.liebertpub.com/doi/abs/10.1089/jpm.2014.0393.

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