Tag Archives for Maureen Maigret

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.

Rethinking Rhode Island’s LTC Delivery System

Published in the Woonsocket Call on April 12, 2015

AARP Rhode Island releases a state-specific analysis, of the 2014 edition of “Raising Expectations: A State Scorecard on Long-Term Services and Supports (LTSS) for Older Adults, People with Physical Disabilities, and Family Caregivers” that just might give state officials cause for concern, a low rating on its long-term care delivery system, when compared to other states.

The 2011 Scorecard was the first multidimensional assessment of state performance of LTSS. Like this earlier version, the release of the 109 page 2014 report, referred to as the LTSS Scorecard, and its state-specific analysis (prepared by policy consultant Maureen Maigret), measuring how well the nation and each of the states is doing in providing long-term care services, does not bode well for the nation’s littlest state. It finds the Ocean State ranks 38th nationally on 26 performance indicators, with it achieving the lowest rank of all New England States.

“Our analysis provides a closer look at where Rhode Island is keeping pace and where we fall short,” said AARP State Director Kathleen Connell. “The report indicates that, as the state with the highest percentage of persons 85 and older, we face exceptional challenges. It is our hope that the General Assembly and state policymakers find the analysis to be a valuable tool,” she says.

Failing Grades

The 2014 LTTS Scorecard indicates that Rhode Island:

• Ranks 4th highest among states in nursing home residents per 1,000 persons age 65 and over

• Has a high percent of low-care nursing home residents and spends a far higher percent of its LTSS dollars than the national average on nursing home care as opposed to home and community-based services.

• Has some of the highest long-term care cost burdens in the country making private pay long-term services unaffordable for the vast majority of older households.
But, on a positive note, the state-specific analysis noted that Rhode Island’s best progress was made in the Legal and System Supports dimension largely due to the 2013 passage of the Temporary Caregiver Insurance program and Caregiver Assessment requirements for Medicaid Home and Community Based Services (HCBS).

In addition, to revisiting the 19 recommendations made following the release of AARP’s 2011 Scorecard, the more recent 2014 analysis recommends five new major policy initiates to improve the littlest state’s LTSS. Among the recommendations: funding of an Aging and Disability Resource Center; the developing an online benefits screening tool to allow access to income-assistance benefits and conducting outreach programs to increase participation; reviewing the Rhode Island’s Nurse Practice Act to allow nurse delegation of certain health maintenance and nursing tasks to direct care workers; requiring hospitals to provide education and instruction to family caregivers regarding nursing care needs when a patient is being discharged; and exploring emerging medical technologies to better serve home and community based clients.

The current analysis finds that only four recommendations out of the 2011 recommendations have been implemented, most notably those to promote coordination of primary, acute and long-term care and to strengthen family caregiver supports.

Meanwhile, only six recommendations were partially implemented, including the expansion of the home and community co-pay program and authority (but not implementation) under the 1115 Medicaid waiver renewal to provide expedited eligibility for Medicaid HCBS and for a limited increase in the monthly maintenance allowance for persons on Medicaid HCBS who transition out of nursing homes. Finally, nine recommendations, although still relevant, have not been implemented.

Response and Comments

Responding to the release of AARP’s 2014 Scorecard and state-wide analysis, Governor Gina Raimondo says, “we need to ensure that we have a strong system of nursing home care for those who truly need those services, but we must invest our Medicaid dollars more wisely to support better outcomes. We cannot continue to have the fourth highest costs for nursing home care (as a percent of median income of older households) and also rank near the bottom of all states in investments in home and community-based care.”

According to Raimondo, the state’s Working Group to Reinvent Medicaid is looking closely at AARP’s Scorecard and state-specific analysis and Rhode Island’s spending on nursing home and long-term care. Health & Human Services Secretary Elizabeth Roberts has directed her staff to look directly at the proposals recommended by AARP Rhode Island.

“I expect the Working Group will include specific proposals stemming from these findings in their April budget recommendations and their long-term strategic report they will complete in July,” says the Governor.

AARP Rhode Island Executive Director Connell, representing over 130,000 Rhode Island members, was not at all surprised by the findings of the recently released 2014 Scorecard. “Based on benchmarks set in the 2011 Scorecard, it was apparent that there was much work to do,” she says, recognizing that there are “limited quick fixes.”

“Some steps in the right direction will not lead to an immediate shift in the data. This is a big ship we’re trying to steer on a better course. We were encouraged, however, by ‘improving’ grades for lower home-care costs and the percentage of adults with disabilities ‘usually or always’ getting needed support rising from 64 percent to 73 percent,” adds Connell.

Connell says that the Rhode Island General Assembly is considering legislation to improve the delivery of care, which might just improve the state’s future AARP ‘report’ cards.” “In this session, there is an opportunity to improve long-term supports and services with passage of several bills, including one that would provide population-based funding for senior centers,” she says, stressing that it’s a “responsible investment that will help cities and towns provide better services.”

Connell adds, “The proposed CARE Act gives caregivers better instruction and guidance when patients are discharged and returned to their homes. This can be a cost saver because it can reduce the number of patients returned for treatment or care.”

The larger mission for state leaders is the so-called ‘re-balancing’ of costs from nursing care to home to community-based care. That’s where real savings can occur and home is where most people would prefer to be anyway.”

Finally, Virginia Burke, Executive Director of the Rhode Island Health Care Association, a nursing facility advocacy groups, supports the implementation of the policy initiatives recommended by AARP’s state-specific analysis. But, “The primary driver of our state’s nursing facility use is the extremely advanced age of our elders,” Burke says, noting that the need for nursing facility care is more than triple for those aged 85 and older than for seniors just a decade younger. Due to the state’s demographics you probably won’t see a change of use even if you put more funding into community based home services, she adds.

Governor Gina Raimondo and the General Assembly leadership will most certainly find it challenging to show more improvement by the time the next Scorecard ranks the states. Older Rhode Islanders deserve to have access to a seamless system, taking care of your specific needs. Creative thinking, cutting waste and beefing up programs to keeping people in their homes as long as can happen might just be the first steps to be taken. But, the state must not turn its back on nursing facility care, especially for those who need that level of service.

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

Report: Alzheimer’s Poses Greater Risk for Older Women than Men

Published in Pawtucket Times, May 11, 2014

According to the Alzheimer’s Association 2014 Alzheimer’s disease Facts and Figures report released last Month, a woman’s estimated lifetime risk of developing Alzheimer’s at age 65 is 1 in 6, compared with nearly 1 in 11 for a man. As real a concern as breast cancer is to women’s health, women age 60 and over are about twice as likely to develop Alzheimer’s over the rest of their lives as they are to develop breast cancer, says the this years’ report.

The Facts and Figures report, an official report of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The 75 page report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the detailed report has become the most cited source covering the broad spectrum of Alzheimer’s issues.

“Through our role in the development of The Shriver Report: A Woman’s Nation Takes on Alzheimer’s in 2010, in conjunction with Maria Shriver, we know that women are the epicenter of Alzheimer’s disease, representing majority of both people with the disease and Alzheimer’s caregivers. The recently released Alzheimer’s Association Facts and Figures examines the impact of this unbalanced burden,” said Angela Geiger, chief strategy officer of the Alzheimer’s Association. “Well-deserved investments in breast cancer and other leading causes of death such as heart disease, stroke and HIV/AIDS have resulted in substantial decreases in death. Geiger calls for comparable investments in research to reach the same levels of successfully preventing and treating Alzheimer’s as the other leading causes of death.

Adding to women’s Alzheimer’s burden, there are 2.5 times as many women as men providing intensive “on- duty” care 24 hours for someone living with Alzheimer’s disease, says the report, also noting that among caregivers who feel isolated, women are much more likely than men to link isolation with feeling depressed (17 percent of women verse. 2 percent of men).

Also noted in the 2014 Alzheimer’s’ Facts and Figures report released on March 19, 2014, the strain of caring for someone with Alzheimer’s is also felt in the nation’s workplace, too. Among caregivers who have been employed while they were also care giving, 20 percent of women verse. 3 percent of men went from working full-time to working part-time while acting as a caregiver. The report also noted that 18 percent of women versus. 11 percent of men took a leave of absence while 11 percent of women verses 5 percent of men gave up work entirely. Finally, 10 percent of women verse 5 percent of men lost job benefits.

Far Reaching Fiscal Human Impact of Alzheimer’s

Meanwhile the Alzheimer’s Association Facts and Figures report noted that there are more than 5 million Americans living with this devastating disorder, including 3.2 million women and 200,000 people under the age of 65 with younger-onset Alzheimer’s disease (see my May 9, 2013 Commentary). However, Alzheimer’s has far-reaching effects by impacting entire families. Also, it was reported that there are currently 15.5 million caregivers providing 17.7 billion hours of unpaid care throughout the nation, often severely impacting their own health. The physical and emotional impact of dementia care giving resulted in an estimated $9.3 billion in increased healthcare costs for Alzheimer’s caregivers in 2013.

The total national cost of caring for people with Alzheimer’s and other dementias is projected to reach $214 billion this year, says the 2014 Facts and Figures report, not including unpaid care giving by family and friends valued at more than $220 billion. In 2014, the cost to Medicare and Medicaid of caring for those with Alzheimer’s and other dementias will reach a combined $150 billion with Medicare spending nearly $1 in every $5 on people with Alzheimer’s or another dementia.

The Facts and Figures report predicts the cost numbers to soar as the baby boomers continue to enter the age of greatest risk for Alzheimer’s disease. Unless something is done to change the course of the devastating disorder, there could be as many as 16 million Americans living with Alzheimer’s in 2050, at a cost of $1.2 trillion (in current dollars) to the nation. This dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending and a 400 percent increase in out-of-pocket spending.

The country’s first-ever National Plan to Address Alzheimer’s disease has a goal of preventing and effectively treating Alzheimer’s disease by 2025. Ensuring strong implementation of the National Alzheimer’s Plan, including adequately funding Alzheimer’s research, is the best way to avoid these staggering human and financial tolls.

Lack of Understanding of the Alzheimer’s’ Disease

“Despite being the nation’s biggest health threat, Alzheimer’s disease is still largely misunderstood. Everyone with a brain — male or female, family history or not — is at risk for Alzheimer’s,” said Geiger. “Age is the greatest risk factor for Alzheimer’s, and America is aging. As a nation, we must band together to protect our greatest asset, our brains.”

In 2010, the Alzheimer’s Association in partnership with Maria Shriver and The Shriver Report conducted a groundbreaking poll with the goal of exploring the compelling connection between Alzheimer’s disease and women. Data from that poll were published in The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which also included essays and reflections that gave personal perspectives to the poll’s numbers. For the first time, that report revealed not only the striking impact of the disease on individual lives, but also its especially strong effects on women — women living with the disease, as well as women who are caregivers, relatives, friends and loved ones of those directly affected.

Realizing the impact Alzheimer’s has on women — and the impact women can have when they work together — the Alzheimer’s Association is launching a national initiative this spring highlighting the power of women in the fight against this disease. To join the movement, visit http://www.alz.org/mybrain.

Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island and Coordinator of the Rhode Island Older Woman’s Policy Group, concurs with the findings of the Alzheimer’s disease Facts and Figures report. She calls for the education of elected officials on the facts about Alzheimer’s disease and its greater prevalence among women. “It is clearly a tragedy for the women effected with the disease, and can be devastating for their caregivers, mostly daughters, trying to keep them at home,” she says.

Maigret says that Alzheimer’s disease and other dementias at the state level have tremendous implications for this state’s budget. “Data show that in Rhode Island, about three-quarters of persons in nursing homes paid for by Medicaid are older women. An overwhelming number of them have some cognitive decline or dementia, she notes.

“We must do more to ensure that quality long-term care is available for persons with dementia and that robust caregiver support services are in place for the many families dealing with parents, spouses and other loved ones suffering from this disease,” says Maigret, stressing that government funding on research must also be greatly increased in the hopes of finding a cure or ways to prevent its onset.

Director Catherine Taylor, of the state’s Division of Elderly Affairs, believes that the Alzheimer’s’ Association’s released 2014 Facts and Figures report, about a woman’s lifetime risk of developing the devastating cognitive disorder verses breast cancer “really help us understand, in stark terms, what a public health crisis Alzheimer’s disease is, especially for women.”

Taylor notes that the Ocean State is in the implementation phase of its State Plan on Alzheimer’s disease and Related Dementias (see my November 13, 2013 commentary), where state officials are working to improve information, care and supports for every family that confronts Alzheimer’s disease. “The work will continue until there’s a cure,” she says.

“It’s important to note that new research findings also indicates that up to half of the cases of Alzheimer’s disease may be linked to risk factors “within our control,” states Taylor, adding that reducing the risk of developing Alzheimer’s disease may be a simple as eating a healthy diet, staying active, learning new skills, and maintaining maintain strong connections with family, friends and community.

For those concerned about their risk of developing Alzheimer’s disease, join Prevent AD, Rhode Island’s Alzheimer’s disease Prevention Registry. Prevent AD volunteers will learn about prevention studies for which they may be qualified to participate in, as well as the latest news on brain health. For more information, call (401) 444-0789.

The full text of the Alzheimer’s Association 2014 Facts and Figures can be viewed at http://www.alz.org/downloads/facts_figures_2014.pdf. The full report also appeared in the March 2014 issue of Alzheimer’s & Dementia: the Journal of the Alzheimer’s Association (Volume 10, Issue 2).

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