Efforts to Revise State Alzheimer’s Plan are in Full Swing

Published in Woonsocket Call on February 25, 2018

By Herb Weiss

Lt. Governor Dan McKee is gearing up Rhode Island’s fight against the skyrocketing incidence of Alzheimer’s disease, called by some as one of the ‘biggest epidemics in medical history.’ Last Wednesday, he announced $30,000 in grants secured by his office and the Rhode Island chapter of the Alzheimer’s Association to hire a consultant to update the state’s five-year plan on Alzheimer’s Disease and Related Disorders. Tufts Health Plan Foundation and the Rhode Island Foundation each pledged $15,000 to support the rewriting of the initial State Plan.

Updating the State’s Alzheimer’s Plan

The updated State Plan, to be created by a collaborative effort of the Rhode Island chapter of the Alzheimer’s Association, the Division of Elderly Affairs and the Office of the Lt. Governor, will provide state lawmakers with a road map for the state, municipalities and the health care system, to confront the continuing Alzheimer’s crisis. It will take a look at the current impact of Alzheimer’s disease on a growing number of Rhode Islanders and outlines what steps the state must take (legislatively and regulatory) to improve dementia-capable programs and services for people with Alzheimer’s and their family caregivers.

Lt. Governor McKee and the Executive Board of the Alzheimer’s Disease and Related Disorders, a working group of comprised of distinguished researchers, advocates, clinicians and caregivers, are now beginning their efforts to meet their deadline by the end of 2018 of having a completed state plan to submit to the Rhode Island General Assembly.

With financial support provided by the Rhode Island Foundation and Tufts Health Plan Foundation, the Alzheimer’s Association, Rhode Island Chapter, as fiscal agent, can now hire a consultant to assist in updating the initial state-five-year plan approved by the Rhode Island General Assembly in 2013. Once the updated report is completed and approved by the Rhode Island General Assembly, the Executive Board can will seek legislative and regulatory changes to carry out its recommendations to ensure that it is more than just a document—that it comes to shape the state’s public policies on Alzheimer’s.

“Rhode Island has been a national leader in Alzheimer’s research. Each day, we make great strides in expanding clinical trials and innovating treatments. Over the last few years alone, the local landscape of prevention and treatment has changed dramatically and positively. The updated State Plan will be an invaluable tool for local leaders, researchers, physicians, advocates and families as we work together to build momentum in the fight against Alzheimer’s,” said Lt. Governor McKee.

“A Living Document”

“We face an emerging crisis with the prevalence of Alzheimer’s disease projected to increase to as many as 27,000 Rhode Islanders by 2025. Alzheimer’s disease is a pivotal public health issue that Rhode Island’s policymakers cannot ignore. With the rapidly growing and changing extent of the Alzheimer’s crisis, it is essential that Rhode Island’s State Plan becomes a living document that stakeholders regularly consult and re-evaluate,” says Donna McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter.

“Communities have greater interest in age-friendly initiatives. There’s a growing understanding of the critical role older people play. They are an asset to community, and their voices and insights are invaluable to the public discourse on what communities need,” said Nora Moreno Cargie, vice president, corporate citizenship for Tufts Health Plan and president of its Foundation.

“A coordinated, strategic approach to Alzheimer’s will lead to better outcomes and healthier lives. Working with generous donors, we’re proud to partner with Tufts to fund this crucial work,” said Jenny Pereira, the Rhode Island Foundation’s vice president of grant programs.

Put Older Woman, Older Veterans on the Radar Screen

The updated state plan must address the growing needs of older woman and the state’s aging veterans population.

Maureen Maigret, Vice Chair of the Long Term Care Coordinating Council and Chair of its Aging in Community Subcommittee, suggests zero in on the special needs of older woman. “Alzheimer’s disease and related dementias is of special concern for older women as the they are more likely to suffer from the debilitating disease due to greater longevity, more likely to need long term care services and supports and are more often than men to be caregivers either unpaid or paid of persons with Alzheimer’s disease. The Aging in Community Subcommittee of the LTCCC has several pieces of legislation to strengthen support for caregivers and to enhance home and community based services,” says Maigret.

Last year, the USAgainstAlzheimer’s, (UsA2), released the issue brief, “Veterans and Alzheimer’s Meeting the Crisis Head on,” with data indicating that many older veterans will face a unique risk factor for Alzheimer’s as a direct result of their military career.

“Forty nine percent of those aging veterans age 65 ((WW2, Korea, Vietnam and even younger veterans, from the Iraq and Afghanistan conflicts in the coming decades), are at greater risk for Alzheimer’s compared to 15 percent of nonveterans over age 65,” say the authors of the issue brief.

UsA2’s issue brief pulled together research findings released by the U.S. Department of Veteran’s Affairs (VA). On study estimates that more than 750,000 older veterans have Alzheimer’s disease and other dementias, another noting that the number of enrollee with Alzheimer’s grew 166 percent from roughly 145,000 in 2004 to 385,000 in 2014.

The minority communities are at even greater risk for Alzheimer’s and minority veterans are predicted to increase from 23.2 percent of the total veteran population in 2017 to 32.8 percent in 2037, says a cited VA study.

The issue brief also cited one study findings that indicated that older veterans who have suffered a traumatic brain injury (TBI) are 60 percent are more likely to develop dementia, Twenty-two percent of all combat wounds in Afghanistan and Iraq were brain injuries, nearly double the rate seen during Vietnam – increasing these younger veterans’ lifetime Alzheimer’s risk.

The Rhode Island Foundation and the Tufts Health Plan Foundation grant funding was key to the Lt. Governor McKee being able to update its state’s plan to battle Alzheimer’s disease. It provides state policy makers with a roadmap o effectively utilize state resources and dollars to provide care for those afflicted with debilitating cognitive disorder. It is money well spent.

The Alzheimer’s Association will shortly issue a Request for Proposal (RFP) seeking a research consultant to assist in revising and updating e the State Plan. For details about the RFP of the State’s Alzheimer’s Plan, email Michelle La France at mlafrance@alz.org.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, healthcare and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.

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Fogarty Retiring as Elderly Affairs Director

Published in Woonsocket Call on January 28, 2018

Just days ago, Director of Rhode Island’s Division of Elderly Affairs (RIDEA), Charles J. Fogarty, announced his retirement to take place at the end of June, after 4 decades of public service. There have been nine directors since the establishment of DEA, including Fogarty.

Fogarty’s plans to retire at the end of the current legislative session. When this occurs, Governor Gina Raimondo will make an appointment to the RIDEA director position. The position requires advice and consent of the RI Senate.

Fogarty began his career in public service in 1978 as a junior policy advisor for Governor J. Joseph Garrahy. He served as lieutenant governor, from 1999 to 2007, having the distinction of being the last lieutenant governor to preside over the State Senate. From 2011 to 2015, Fogarty served as the director of the Department of Labor and Training, ending up his career as the Director of RIDEA.

During his years of public service, Fogarty, 62, has been focused on long term care and home- and community-based services and supports for older Rhode Islanders. He played a key role in steering and expanding the work of the Long-Term Care Coordinating Council during his tenure as Lieutenant Governor for two terms. Under his leadership at the Department of Labor and Training, he reformed the unemployment insurance process. During his stewardship as Director at Elderly Affairs (since January 2015), he has led a division providing services and advocacy for over 166,500 older adults living in Rhode Island.

As a Glocester resident he was elected to the Glocester Town Council in 1984 and in 1990 was elected as a state senator, where he served for eight years. While a state senator, he served as both majority whip and Senate President Pro Tempore.

Fogarty Reflects on RIDEA Tenure

“Throughout my career, I have felt drawn to serve the people of Rhode Island. I look back fondly and feel fortunate to be a part of the forward progress Rhode Island is experiencing–particularly working with Governor Raimondo to empower seniors and help them to remain independent and living in the community,” said Fogarty.

According to Fogarty, under his helm, RIDEA has continued to process of supporting community-and home-based services for seniors and caregivers, but more needs to be done in order to really rebalance Rhode Island’ long-term care system. Aging in the community- in our own homes- is what many Rhode Islanders want for ourselves and our loved ones, he says.

“We’ve restored funding for Meals on Wheels, provided additional funding for respite services, and this year are proposing to double the amount the state invests in senior centers. Senior centers are primary gateways in the community that connect older adults and caregivers to services that can have profound impacts upon their ability to remain healthy and independent,” notes Fogarty.

Fogarty says, “If the general assembly follows Governor Raimondo’s lead and doubles the funding for senior centers, Rhode Island will be taking a huge step in the right direction of providing the appropriate support to these essential senior services.”

“We need to prepare for the shift in demographics that is occurring, and accept that the old model of providing long term care services isn’t working for the large number of Boomers who are marching towards retirement and old-age. RIDEA and other key partners are engaging in the Age-Friendly Rhode Island initiative, and we all need to work together to provide more choices and options for Rhode Islanders as they age, empowering them, and helping them to remain independent and healthy,” adds Fogarty.

Tributes to Fogarty

“Charlie has dedicated his entire professional life to Rhode Island and we thank him for his decades of service to our state,” said Governor Gina M. Raimondo, in a statement, recognizing the key role he played as DEA Director in expanding Meals on Wheels and in repealing the tax that seniors pay on their Social Security.

“As sitting Lt. Governor, I appreciate Charlie being a resource to me on issues important to our state’s seniors. Under his leadership, the Division of Elderly Affairs has been a hands-on partner in executing the initiatives of the Long Term Care Coordinating Council and the Alzheimer’s Executive Board,, says Lt. Governor Dan McKee.

“We are especially grateful for Charlie’s support in launching our Age Friendly RI Report in 2016. In a few weeks, we will be announcing an exciting development in Rhode Island’s Alzheimer’s State Plan that would not be possible without Charlie’s participation. I have enjoyed working with Charlie and I wish him all the best as he begins this exciting new chapter,” adds McKee.

Maureen Maigret, Vice Chair Long Term Care Coordinating Council, sees Fogarty’s experience as oversight as Lt. Governor of the state’s Long-Term Coordinating Council, gave him the insight ad understanding of long term care issues and the needs of older Rhode Islanders.

Maigret says that professionals in the aging network will remember Fogarty for his strong support for and educating the community about need to expand services that help older persons to stay at home and live independently for as long as possible and to pay attention to caregiver support needs.

Adds AARP Rhode Island State Director Kathleen Connell, “I have known Charlie for many years and know him to be a worthy heir of his uncle, the late-great RI Congressman, who was a leading champion of legislation and policy benefiting older Americans.”

“At Elderly Affairs, he utilized many skills and resourcefulness acquired through his time as a legislator, Lt. Governor and Labor & Training director — not to mention his personal interest in the health and wellbeing of all Rhode Islanders. His leadership has been an enormous asset at the Division of Elderly Affairs,” says Connell.

After his retirement from four decades of state service, he will continue to serve on the faculty at Johnson & Wales University, as Adjunct Professor of Leadership Studies. He also plans to volunteer with Meals on Wheels, having seen the significant impact the home-delivery meal program has on combatting senior isolation. He will also continue to be involved at his church.

On a personal level, Fogarty plans to “learn to cook,” by enrolling in cooking classes, travel and perhaps learn to speak Spanish.

 

Aging Report is “Rhode Map” for Change

Published on June 27, 2016 in Pawtucket Times

Next year look for the policy debate in the Rhode Island General Assembly to heat with Governor Dan McKee’s Aging in Community Subcommittee of the Long Term Care Coordinating Council (LTCCC) release of a sixty page report in June documenting the sky rocketing growth of the state’s older population and identifying strategies to allow these individuals to age in place and stay in their communities.

The Aging in Community Subcommittee was mandated by the enactment of the Aging in Community Act of 2014, sponsored by Senate Majority Whip Mary Ellen Goodwin and Representatives Christopher Blazejewski and Eileen Naughton. The Subcommittee, chaired by Maureen Maigret, Vice Chair of the Long Term Care Coordinating Council, and former Director of the Division of Elderly Affairs, staff from Rhode Island College, Brown University and the University of Rhode Island, representatives from state agencies, members of the senior community, and senior service providers.

According to Maigret, it has taken almost 18 months to gather data, host focus groups and to write the “Aging in Community” report. The report provides demographic data snapshot on the state’s older population and also inventories current services and resources. It also identifies challenges faced by older Rhode Islanders and recommends strategies to promote successful aging in community in these nine issue areas.

Maigret believes that this report may take the most comprehensive look at what aging programs and services are available to assist older Rhode Islanders age in place in their communities and it identifies what programs and services are lacking. “The State Plan on Aging does have some data and actions planned but does not comprehensively cover all the domains covered in the “Aging in Community” report,” she says.

A Demographic Snap Shot

In 2010, the report notes that over 152,000 Rhode Islanders were age 65, predicting that this number will sky rocket to 247,000 in 2030. By 2025, Rhode Island will be considered to be a “Super Aging” state where 20 percent of its population will be over age 65. The report noted that two years ago the population of New Shoreham, Little Compton, North Smithfield, North Providence and Tiverton had already reached “Super Aging” status.

The report added that 42 percent of over age 65 household incomes amounted to less than $30,000. Only 49 percent of the retirees have non Social Security retirement income. Fifty two percent of the older renters and 39 percent of the home owners were financially burdened with covering housing costs. Poverty levels for older Rhode Islander vary, from 7 percent in Bristol County to 18 percent in Providence County.

The LTCCC report notes that even with lower incomes older Rhode Islanders have a major impact on the state’s economy. They bring in over $2.9 billion dollars from Social Security pensions and $281 million in taxes into the state’s economy. Older workers account for 33,750 jobs throughout all job sectors.

Rhode Island’s retirees provide an estimated $ 149 million by volunteering and an estimated $ 2 billion in providing caregiving services to family and friends.

A Spotlight on Priority Recommendations

The Subcommittee’s findings were the result of interviews held with aging service providers, an examination of age-friendly best practices in other states and ten focus groups conducted with older Rhode Islander from across the state.

The focus groups attendees gave the Subcommittee valuable information. They stressed that Senior Centers were “highly valued.” Many expressed financial concerns for their current situation and into the future. Attendees were very concerned about the lack of transportation and lack of affordable housing. State customer service employees were viewed by many as “unfriendly.”

Dozens of strategies were listed in the LTCCC report for state policy makers to consider to better assist older Rhode Islanders to successfully age in their community in these nine issue areas: Information and Communication, Community Engagement, Transportation, Economic Security, Food Security and Nutrition, Housing, Supports at Home, Healthcare Access and Open Spaces/Public Buildings

The LTCCC report identifies priority strategies including the restoring of senior center funding based on a population-based formula and continuing RIPTA’s no-fare bus pass program for low income seniors and persons with disabilities. It also calls for increase payments for homecare and for restoring state funding for Elder Respite.

Maigret says that creating a coalition of aging groups to “build an age-friendly Rhode Island” is the next step to take. Businesses can also become “age friendly” and better understand the economic value of older Rhode Islanders bring to the state and its educational institutions, she says.

Political Will Required to Implement LTCCC Report Strategies

There must be a political will to implement the strategies of the LTCCC report, says Maigret, starting with the state’s top elected official. “Governor Raimondo’s proposed budget had added $600,000 in funding for senior centers but the Rhode Island General Assembly removed it,” she said, noting that the decrease in funding got caught up in the negativity surrounding Community Service grants. “We were fortunate the 2017 budget will still have $400,000 in funding for senior centers,” she says.

“Rhode Island’s older adult population contributes a great deal socially, economically, and intellectually to our communities. Ensuring that those Rhode Islanders who desire to age-in-place are able to do so only enriches our society,” said Governor Raimondo. “I’m pleased that Director Fogarty, and members of his senior staff, serve and work with the Long Term Care Coordinating Council and the Subcommittee on Aging in Community. The insight they gain from service with these committees helps to shape State policy and programs related to services for seniors.

“I applaud the members of the Subcommittee for their dedication to creating a clear, comprehensive report on aging that can be a catalyst for change in our state. Their work recognizes that Rhode Island’s older population is growing dramatically and that we must direct public policy to help them remain active and in their homes,” said Lt. Governor McKee. I look forward to supporting the strategies detailed in the Subcommittee’s report to help build stronger, healthier communities for all Rhode Islanders.”

Finally, House Speaker Nicholas Mattiello, also says that the Subcommittee report’s recommendations will also be studied closely next legislative session. “I will be reviewing the findings of the report in greater detail and I will confer with Representatives Chris Blazejewski and Eileen Naughton, who sponsored and advocated for the Aging in Community Act of 2014. Our older population in Rhode Island is a growing one and it is important that we continue to listen to their needs and be responsive. I commend the work of the subcommittee, as well as all those who participated in the focus groups. I would anticipate that any policy and financial recommendations will be fully analyzed by the members of the General Assembly in the 2017 session.”

The LTCCC’s “Aging in Community” report gives our policy makers a road map in reconfiguring the state’s fragmented aging programs and services. With the Governor, House Speaker and Senate President on board, we might just see legislative changes in the next years that might just be what we need to keep people at home and active in their community. Lawmakers must not act penny-wise and pound foolish when considering legislative fixes.

Both the executive summary and the full Subcommittee “Aging in Community” report are available on the Lieutenant Governor’s website at: http://www.ltgov.ri.gov and the general assembly website at: http://www.rilin.state.ri.us/Pages/Reports.aspx.

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.

GAO Study Reports New Trends Push Older Women into Poverty

Published in Pawtucket Times, March 7, 2014

Following on the heels of a Government Accountability Office (GAO) report released last week on March 5, the U.S. Senate Special Committee on Aging held a hearing to put a Congressional spotlight on the alarming increase of older Americans becoming impoverished.  The GAO policy analysts concluded that a growing number of the nation’s elderly, especially women and minorities, could fall into poverty due to lower incomes associated with declining marriage rates and the higher living expenses that individuals bear.

As many as 48 percent of older Americans live in or on the edge of poverty. “While many gains have been made over the years to reduce poverty, too many seniors still can’t afford basic necessities such as food, shelter and medicines,” said Aging Committee Chairman Bill Nelson (D-FL).

Senate Aging Committee Looks at Income Security for Elders

Policy experts told Senate lawmakers on Wednesday that millions of seniors have been spared from abject poverty thanks to federal programs such as Social Security, Medicaid, Medicare, SSI, and food stamps.  The testimony contrasted with the picture painted by House Budget Committee Chairman Paul Ryan (R-WI) earlier this week, who produced a report that labeled the federal government’s five-decade long war on poverty a failure.

Appearing before the U.S. Senate Special Committee on Aging, Patricia Neuman, a senior vice president at the Henry J. Kaiser Family Foundation, stressed the importance of federal anti-poverty programs.

“Between 1966 and 2011, the share of seniors living in poverty fell from more than 28 percent to about 9 percent, with the steepest drop occurring in the decade immediately following the start of the Medicare program,” said Neuman.  “The introduction of Medicare, coupled with Social Security, played a key role in lifting seniors out of poverty.”

Neuman’s remarks were echoed by Joan Entmacher of the National Women’s Law              Center, who credited food stamps, unemployment insurance and Meals on Wheels, along with Social Security, for dramatically reducing poverty among seniors.  The report was highly critical of many programs designed to help the poor and elderly saying they contribute to the “poverty trap.”  Ryan and other House lawmakers have long proposed capping federal spending and turning Medicaid, food stamps and a host of other programs for the poor into state block grants.

Older Women and Pension Benefits

GAO’s Barbara Bovbjerg also brought her views to the Senate Select Committee on Aging hearing. Bovbjerg, Managing Director of Education, Workforce, and Income Security Issues, testified that the trends in marriage, work, and pension benefits have impacted the retirement incomes of older Americans.

Over the last five decades the composition of the American household has changed dramatically, stated Bovbjerg, noting that the proportion of unmarried individuals has increased steadily as couples have chosen to marry at ever-later ages and as divorce rates have risen.  “This is important because Social Security is not only available to workers but also to spouses and survivors.  The decline in marriage and the concomitant rise in single parenthood have been more pronounced among low-income, less educated individuals and some minorities,” she says.

As marriage and workforce patterns changed, so has the nation’s retirement system, adds Bovbjerg.  Since 1990, employers have increasingly turned away from traditional defined benefit pensions to defined contribution plans, such as 401(k)s, she says, this ultimately shifting risk to individual employees and making it more likely they will receive lump sum benefits rather than annuities.

These trends have affected retirement incomes, especially for women and minorities, says Bovbjerg, that is fewer women today receive Social Security spousal and survivor benefits than in the past; most qualify for benefits on their own work history. While this shift may be positive, especially for those women with higher incomes, unmarried elderly women with low levels of lifetime earnings are expected to get less from Social Security than any other demographic group.

According to Bovbjerg, these trends have also affected household savings Married households are more likely to have retirement savings, but the majority of single-headed households have none. Obviously, single parents in particular tend to have fewer resources available to save for retirement during their working years.  With Defined Contribution pension plans becoming the norm for most, and with significant numbers not having these benefits, older Americans may well have to rely increasingly on Social Security as their primary or perhaps only source of retirement income.

Inside the Ocean State

Although the GAO report findings acknowledge a gender-based wage gap that pushes older woman into poverty, Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island and Coordinator of the Rhode Island Older Woman’s Policy Group, observes that this inequity has been around since the 1970s when she chaired a legislative commission studying pay equity. “Progress in closing the gender wage gap has stagnated since 2000 with the wage ratio hovering around 76.5 percent”, she says.

GAO’s recent findings on gender based differences in poverty rates are consistent with what Maigret found researching the issue for the Women’s Fund of Rhode Island in 2010.  She found that some of the differences in the Ocean State can be attributed to the fact that older women are far less likely to be married than older men.  Almost three times as many older women are widowed when compared to men.

Maigret says that her research revealed that older women in Rhode Island are also less likely to live in family households and almost twice as likely as older men to live alone. Of those older women living alone or with non family members an estimated one out of five was living in poverty. For Rhode Island older women in non-family households living alone, estimated median income in 2009 was 85% that of male non-family householders living alone ($18,375 vs. $21,540).

Finally, Maigret’s report findings indicate that around 11.3 percent of older Rhode Island women were living below the federal poverty level as compared to 7.3 percent of older men in the state. Older women’s average Social Security benefit was almost 30 percent less than that of older men and their earnings were only 58 percent that of older men’s earnings.

             There is no getting around peoples’ fears about outliving their savings becoming a reality if they live long enough,” said AARP Rhode Island State Director Kathleen Connell. “One thing that the latest statistics reveals [including the GAO report] is the critical role Social Security plays when it comes to the ability of many seniors to meet monthly expenses. Social Security keeps about 38 percent of  Rhode Islanders age 65 and older out of poverty, according to a new study from the AARP Public Policy Institute.”

“Nationally, figures jump off the page,” Connell added. “Without Social Security benefits, 44.4 percent of elderly Americans would have incomes below the official poverty line; all else being equal; with Social Security benefits, only 9.1 percent do, she says, noting that these benefits lift 15.3 million elderly Americans — including 9.0 million women — above the poverty line.”

“Just over 50 percent of Rhode Islanders age 65 and older rely on Social Security for at least half of their family income—and nearly 24 percent rely on Social Security for 90 percent of their family income” states Connell.

             “Seniors trying to meet the increasing cost of utilities, prescription drugs and groceries would be desperate without monthly Social Security benefits they worked hard for and planned on. As buying power decreases, protecting Social Security becomes more important than ever. Older people know this; younger people should be aware of it and become more active in saving for retirement. Members of Congress need to remain aware of this as well,” adds Connell.

Kate Brewster, Executive Director of Rhode Island’s The Economic Progress Institute, agrees with Maigret that older women in Rhode Island are already at greater risk of poverty and economic security than older men.   “This [GAO] report highlights several trends that make it increasingly important to improve women’s earnings today so that they are economically secure in retirement.  Among the “policy to-do list” is shrinking the wage gap, eliminating occupational segregation, and raising the minimum wage. State and federal proposals to increase the minimum wage to $10.10 would benefit more women than men, demonstrating the importance of this debate to women’s economic security today and tomorrow.”

House Speaker Gordon Fox is proud that the General Assembly in the last two legislation sessions voted to raise minimum wage to its current level of $8 per hour.  That puts Rhode Island at the same level as neighboring Massachusetts, and we far surpass the federal minimum wage of $7.25, he said.  He says he will carefully consider legislation that has been introduced to once again boost the minimum wage.

“Bridging this gap is not only the right thing to do to ensure that women are on the same financial footing as men, but it also makes economic sense”, says Rep. David N. Cicilline.  At the federal level, the  Democratic Congressman has supported the ‘When Women Succeed, America Succeeds’ economic agenda that would address issues like the minimum wage, paycheck fairness, and access to quality and affordable child care. “Tackling these issues is a step toward helping women save and earn a secure retirement, but we also have to ensure individuals have a safety net so they can live with dignity in their retirement years,” says Cicilline.

With Republican Congressman Ryan in a GOP-controlled House, captured by the Tea Party, leading the charge to dismantle the federal government’s 50 year war on poverty, the casualties of this ideological skirmish if he succeeds will be America’s seniors.  Cutting the safety net that these programs created will make economic insecurity in your older years a very common occurrence.

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