Tag Archives for Alzheimer’s Association

Splaine Consulting Gears Up to Update State’s Alzheimer’s Plan

Published in Woonsocket Call on July 8, 2018

With the securing of a total of $30,000 in grants, Lt. Governor Dan McKee officially begins Rhode Island’s effort to update its state’s five-year plan on Alzheimer’s Disease and Related Disorders to combat the rapidly increasing incidence of Alzheimer’s disease.

When announcing the successful fundraising effort, McKee noted that Rhode Island has been in the forefront of 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 the momentum in the fight against Alzheimer’s,” he said.

That day, Donna McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter, warned “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. We will continue to work diligently to ensure that the vision of our state’s Alzheimer’s Disease Plan is translated into actual public policy.”

Consultants Bring Content Expertise to Project

With two $15,000 grants provided by the Rhode Island Foundation and Tufts Health Plan Foundation, the Alzheimer’s Association, Rhode Island Chapter, as fiscal agent, released a request for proposal (RFP) for a consultant who would bring writing skills, expertise in public policy initiatives to provide programs and services to persons with Alzheimer’s disease, to the project.

Five consultants responded to the RFP and after a month long-search and a series of interviews, Michael Splaine and Kate Gordon, of Splaine Consulting, a small advocacy and government affairs consulting firm based in Columbia, Maryland, got the contract. No question, Splaine and Gordon brought the right blend of skills to the project. The consultants have provided content matter expertise to over two dozen State Alzheimer’s Plans.

Immediately prior to starting this company eight years ago, Splaine served as Director of State Government Affairs in the Public Policy Division of the Alzheimer’s Association for over 23 years, leading its grassroots network to accomplish state policy priorities, including persuading states to develop comprehensive state Alzheimer Plans in 2007-2008.

While at the Association he was a staff team member for the Association’s Early Stage Initiative (a program working to promote inclusion and programs for persons with Alzheimer’s.) and provided leadership in the Association on the government affairs aspects of the Healthy Brain Initiative, a cooperative agreement with the U.S. Centers for Disease Control, and Prevention continues this work as a consultant to the Association.

Kate Gordon, who has worked with Splaine for over 18 years, has a reputation for being a skilled health policy analyst and grassroots advocacy strategist. She brings expertise in a diverse range of health and long-term care issues topics, including federal and state policies affecting persons with dementia, caregiver interventions, and direct care worker training. Her previous work includes assisting in the development of the first United States National Alzheimer’s Plan and 18 state government Alzheimer’s disease plans.

Gordon was also awarded the prestigious 2013 HHSinnovates People’s Choice and Secretary’s Choice award winner for “Connecting to Combat Alzheimer’s.”

“Kate and I have worked with every level of government from local to global that is taking on the challenge of Alzheimer’s disease, including regionally and globally with the World Health Organization,” explains Splaine. The company’s long listing of clients includes the Alzheimer’s Association in their public health work with Center for Disease Control and Prevention (CDC), Alzheimer’s Disease International, the umbrella organization for over 90 national organizations devoted to persons with dementia, and overtime Splaine Consulting has also worked with the national center on elder abuse, Consumer Voice, Arthritis Foundation to name just a few.

The path that led Splaine Consulting to being chosen to update Rhode Island’s Alzheimer’s Plan may seem ironic to some, says Splaine, because it has most certainly brought him back home. He started his early professional life in the Ocean State, graduating Rhode Island College with a gerontology certificate, even having been married to a native Bristol resident for 41 years.

“My earliest work with people with cognitive impairment included volunteer teaching for Fr. (now Msgr.) Gerry Sabourin who was developing what was then called a special religious ed program and my field placement for Rhode Island College at two different adult day care centers,” says Splaine.

“I am thrilled to welcome Splaine Consulting to our team as we relaunch Rhode Island’s coordinated effort to fight Alzheimer’s disease and provide patients with the highest level of support and care,” said McKee. “Rhode Island is a leader in Alzheimer’s research and treatment but knowing how other states are addressing this devastating disease is essential to our success. Splaine’s experience in crafting other State Plans and their thorough understanding of the national landscape make Michael and Kate valuable partners.”

Combatting the Alzheimer’s Epidemic

The update of the State’s initial five-year Alzheimer’s Plan approved by the Rhode Island General Assembly in 2013, is 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. The final plan will provide state lawmakers, municipalities and the state’s health care system with a policy strategy to confront the anticipated Alzheimer’s epidemic. It will also take a look at the current impact of Alzheimer’s disease on a growing number of Rhode Islanders and most importantly, details the steps the state must take (legislatively and regulatory) to improve programs and services for people with Alzheimer’s and their family caregivers.

Once the updated report is completed and approved by the Rhode Island General Assembly, the state’s Long-Term Care Coordinating Council’s Executive Board 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.

The updated report must be completed by October 31, after which there will be a follow up survey to all stakeholders in the process to see “how we did at capturing their ideas,” says Splaine.

Now, Splaine and Gordon begin their analytical review work of reviewing the existing Alzheimer’s Disease Plan, contacting key state agencies for their input, and planning formal interviews over the next 6 weeks with key persons from care, research, academia, and persons with dementia and family caregivers.

Community input is crucial, says Splaine. “Through the Long-Term Care Coordinating Council’s Executive Board under the leadership of the Lt. Governor, caregiver subcommittee we have a survey out [to solicit comments] that will stay open through the end of August that will be available online and offline, he says. Kicking off on August 5 and concluding August 10, 18 community town meetings are scheduled to allow Rhode Islanders to give their thoughts as to what should be included in the updated State Alzheimer’s Plan.

For a schedule of community town meetings visit, ltgov.ri.gov/alz.

New Report Says Alzheimer’s Disease Is Now Major Public Health Issue

Published in the Woonsocket Call on March 25, 2018

For the second consecutive year, total payments to care for individuals with Alzheimer’s or other dementias will surpass $277 billion, which includes an increase of nearly $20 billion from last year, according to data reported in the Alzheimer’s Association 2018 Alzheimer’s Disease Facts and Figures report recently released last Tuesday.

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system.

“This year’s report illuminates the growing cost and impact of Alzheimer’s on the nation’s health care system, and also points to the growing financial, physical and emotional toll on families facing this disease,” said Keith Fargo, Ph.D., director of scientific programs and outreach for the Alzheimer’s Association, in a statement. “Soaring prevalence, rising mortality rates and lack of an effective treatment all lead to enormous costs to society. Alzheimer’s is a burden that’s only going to get worse. We must continue to attack Alzheimer’s through a multidimensional approach that advances research while also improving support for people with the disease and their caregivers,” he said.

Adds Fargo, “Discoveries in science mean fewer people are dying at an early age from heart disease, cancer and other diseases,” said Fargo. “Similar scientific breakthroughs are needed for Alzheimer’s disease, and will only be achieved by making it a national health care priority and increasing funding for research that can one day lead to early detection, better treatments and ultimately a cure.”

2018 Alzheimer’s Facts and Figures

New findings from the 88-page report on March 20, 2017 reveal the growing burden on 16.3 million caregivers providing 18.4 billion hours of care valued at over $ 232 billion to 5.7 million people with the devastating mental disorder. By 2050, the report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care skyrocketing to more than $1.1 trillion.

Between 2000 and 2015 deaths from health disease nationwide decreased by 11 percent but deaths from Alzheimer’s disease have increased by 123 percent, says the new data in the report, noting that one out of three seniors dies with Alzheimer’s or another dementia. It even kills more than breast cancer and prostate cancer combined. In Rhode Island in 2015, the number of deaths from Alzheimer’s disease was 453, making the devastating brain disorder the 5th leading cause of death in the state.

In 2017, 53,000 Rhode Island caregivers provided an estimated 61 million hours of unpaid physical and emotional care and financial support – a contribution to the nation valued at $768 million dollars. The difficulties associated with providing this level of care are estimated to have resulted in $45 million in additional healthcare costs for Alzheimer’s and other dementia caregivers in 2017.

State Updates Battle Plan Against Alzheimer’s Disease

“The Alzheimer’s Association’s most recent report about Alzheimer’s Disease in Rhode Island illustrates the need to take swift action in updating our State Plan to ensure Rhode Island is prepared to provide the necessary resources to families, caregivers and patients who are struggling with the disease,” says Lt. Governor McKee,

McKee adds that the updated State Plan will be a blueprint for how Rhode Island will continue to address the growing Alzheimer’s crisis. “It will create the infrastructure necessary to build programs and services for the growing number of Rhode Islanders with the disease. The updated Plan will also outline steps the state must take to improve services for people with Alzheimer’s and their families. After the update is complete, my Alzheimer’s Executive Board will seek legislative and regulatory changes to carry out the recommendations of the Plan and ensure that it is more than just a document,” he says.

“One of the many types of caregivers benefiting from AARP’s caregiving advocacy in Rhode Island are family members who care for those with Alzheimer’s,” said AARP Rhode Island State Director Kathleen Connell. “They are among the army of 10 million wives, husbands, sons and daughters nationwide. The majority are women and according to researchers, especially when it comes to dementia and Alzheimer’s care. Approximately 40 percent of those caregivers say they have no other options or choices, and a third say they provide care 24/7.

“The latest report indicates what we already know,” Connell added. “This will continue to be rising challenge in Rhode Island as our population ages. The disease will place more stress on our Medicaid-funded nursing home capacity, which should make this a concern for taxpayers. There is a strong case for increasing research funding so that someday we may reverse the tide.

“Our Web site, http://www.aarp.org, provides abundant resources for these dedicated caregivers. AARP in states across the nation, including Rhode Island, have worked to pass legislation that provides paid respite for caregivers who have jobs as well as caregiving obligations. We have supported the Alzheimer’s Association here in Rhode Island for many years and, last year, a small team of AARP volunteers participated in the Alzheimer’s Walk. Joined by others, they are gearing up for this year’s walk.”

Increased Research Funding Needed Now

Donna McGowan, Alzheimer’s Association, RI Chapter Executive Director, says that the 2018 Alzheimer’s Disease Facts and Figures report should send a very clear message that Alzheimer’s disease is an issue that policy makers cannot ignore. “This is an urgent public health crisis that must be addressed. Early detection and diagnosis of the disease leads to better planning, avoiding preventable hospitalizations, and over all a better quality of life for the patient and the caregiver,” says McGowan.

McGowan warns that the health care system is not ready to handle the increased cost and number of individuals expected to develop Alzheimer’s disease in the coming years. “With a vigorous National Plan in place to address the Alzheimer’s crisis, and annual budget guidance for Congress, it is essential that the federal government continue its commitment to the fight against Alzheimer’s by increasing funding for Alzheimer’s research,” adds McGowan.

Rhode Island Congressman David Cicilline sees the need for increased funding for direct services for those afflicted with Alzheimer’s disease. He voted for H.R.1625, the omnibus spending bill that increases funding for the National Institute of Health’s Alzheimer’s research by $414 million. And two years ago, Cicilline worked to pass H.R.1559, “The HOPE for Alzheimer’s Act,” which President Obama signed into law to expand Medicare coverage for Alzheimer’s treatment.

If Cicilline succeeds to get the Republican-controlled Congress to have a vote on H.Res.160, his bill to reestablish the House Select Committee on Aging, it will allow House lawmakers to hear expert testimony and make new policy recommendations to improve the delivery of care to those afflicted with Alzheimer’s and to assist caregivers, too.

For details, go to http://www.alz.org/facts.

Congress Passes RAISE Family Care Givers Act

Published in the Woonsocket Call on January 14, 2018

With the dust finally settling after the heated partisan battles over the dismantling President Obama’s landmark Obamacare and later reforming the nation’s tax code, Congressional Democrats and Republicans put political and philosophical differences aside to overwhelming pass by voice vote the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.

The RAISE Family Caregivers Act of 2017, introduced in the U.S. Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), was passed on January 8, 2017. Two months earlier a House companion measure (H.R. 3759), introduced by Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL), was passed. At press time, the legislation now heads to the President’s desk to be signed into law.

The caregiver legislation would direct the U.S. Secretary of Health and Human Services to develop and sustain a strategy to recognize and support family caregivers across the nation. This bipartisan legislation has been endorsed by more than 60 aging and disability organizations, including AARP, the Alzheimer’s Association, the National Committee to Preserve Social Security and Medicare, the Elizabeth Dole Foundation, the Michael J. Fox Foundation, and the Arc.

Universal Praise for Congressional Passage

Congress clearly understands that caregiving is not a partisan issue but a life experience for millions of Americans.Yes, everyone at some time in their life may take on the role of caregiver for parents, spouses, children and adults with disabilities, or personally know caregivers.

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregiver step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

“Family caregivers play an essential role in our communities by dedicating time and attention and making countless personal and financial sacrifices to care for their loved ones,” said Sen. Collins upon the Senate bills passage. “I am delighted that our bipartisan legislation to develop a coordinated strategic plan to leverage our resources, promote best practices, and expand services and training available to caregivers will now become law,” adds the Maine Senator, who chairs the Senate Special Committee on Aging.

Senator Sheldon Whitehouse sees the value of the RAISE Family Caregivers and its impact to Rhode Island caregivers. “The passage of the bipartisan RAISE Family Caregivers Act is an important first step toward easing the burden on the caregivers who mean the world to the family members they care for.” says the Rhode Island Senator who serves on the Senate Special Committee on Aging.

“Family caregivers play a key role in supporting their loved ones in Rhode Island and throughout the nation. adds Democratic Policy and Communications Committee Co-Chair David N. Cicilline. “The RAISE Family Caregivers Act ensures that family caregivers have the support and the resources they need to do their jobs safely and effectively. As a co-sponsor of H.R. 3759, I made sure my colleagues understood that this bill needed to become law as soon as possible, and I am glad that it passed both Chambers without objection. Now I urge President Trump to sign it and allow this important law to take effect”

“Thanks to the efforts of bipartisan Senate and House champions—Senators Collins and Baldwin and Representatives Harper and Castor—the RAISE Family Caregivers Act will help address the challenges family caregivers face,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond, in a statement. “Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge,” she says.

According to LeaMond, family caregivers take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. She estimates that the unpaid care that family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.

What’s in the RAISE Family Caregiver Act?

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council (meetings open to the public) would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The development of the initial strategy would take up to 18 months, followed by updates of the strategy biennially. The bill would improve the collection and sharing of information, including information related to evidence-based or promising practices and innovative models regarding family caregiving; better coordinate, assess, maximize the effectiveness, and avoid unnecessary duplication of existing federal government activities to recognize and support family caregivers. The strategy and work around it could help support and inform state and local efforts to support family caregivers, promoting greater adoption of person- and family-centered care in all health and Long-Term Service and Support (LTSS) settings, with the person and the family caregiver (as appropriate) at the center of care teams

In addition to requiring the development of a strategy to support the nation’s family caregivers, the bill also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is authorized and it would sunset in five years.

Calls for More Caregiver Assistance

“In Rhode Island, we’re working hard at staying ahead on legislation supporting caregivers,” said AARP Rhode Island State Director Kathleen Connell. “We passed temporary caregiver insurance, which covers thousands of working caregivers with salary protection much like TDI (Temporary Disability Insurance). Earned-paid sick leave fills in a gap that caregiver TDI may not cover in emergency situations. The AARP-back CARE Act now requires hospitals, upon admitting patients, identify a designated caregiver, inform that person on discharge and provide training for at-home medical tasks. We have passed legislation making it easier for caregivers to modify their homes. And just this month, the state opened applications for a grant program we fought for in the current budget that provides up to $5,000 in hard cash for caregivers who make qualifying home improvements.” (Download a grant application at http://www.aarp.org/ricaregiving)

“We cannot stop here,” added Connell. “And the RAISE Act keeps the need for ongoing strategic planning and smart policymaking on the front burner. The numbers demand escalating action that will improve conditions not just for people who need care, but their family caregivers as well. But it is very important to emphasize that all taxpayers benefit when someone with chronic illness or aging disabilities can stay in their homes, rather than move into Medicaid-supported nursing homes. We all win when we support caregivers.”

NOTE: “The Rhode Island Chapter of the Alzheimer’s Association has a commitment to assisting caregivers navigate the various challenges of caring for someone living with Alzheimer’s and other related dementias,” says Donna McGowan, Executive Director of the Alzheimer’s Association, RI Chapter. Call 1-800-272-3900 for details about caregiver and provider services (including confidential support, information, and referrals to local resources via access to a 24/7 Helpline, care consultation, caregiver support groups, education programs for families, and online information (www.alz.org/ri ).