General Assembly: It’s Time to Endorse State Alzheimer’s Plan

Published in the Woonsocket Call on May 12, 2019

Just days ago, the Alzheimer’s Association-Rhode Island Chapter, along with over 75 volunteers and supporters gathered for the group’s Advocacy Day, in the Governor’s statehouse at the Rhode Island State, warning state lawmakers about the increasing incidence in Alzheimer’s disease and its impending impact on state programs and services. According to the Alzheimer’s Association 2019 Alzheimer’s Disease Facts & Figures report, there are now 23,000 people living with Alzheimer’s and 53,000 Alzheimer’s caregivers in Rhode Island. This number will skyrocket as Rhode Island’s population continues to age; they say.

During the two-hour rally, Alzheimer’s advocates pushed for the passage of H 5569, sponsored by Rep. Mia Ackerman (D-Cumberland), and S 310, Sen. Cynthia A. Coyne (D-Barrington), companion measures that would legislatively endorse the newly released State Alzheimer’s Plan.

House Majority Leader Joseph Shekarchi also joined in, calling for passage of H. 5189, his legislative proposal that would create a program under the Department of Health and an advisory council to oversee implementation of programming, requiring training for medical professionals, and establishing Alzheimer’s plans in medical facilities. the Senate companion measure is S 223.

Improving Supports for Those Afflicted with Alzheimer’s

Once the Rhode Island General Assembly passes the legislative proposals to endorses the State Alzheimer’s Plan, the state’s Long-Term Care Coordinating Council’s executive board would seek legislative and regulatory changes to carry out its bold set of recommendations for improving supports to those afflicted by Alzheimer’s and other dementias. But this legislation is stalled.
Twenty-three town meetings,45 expert interviews, combined with a survey of 200 Rhode Islanders impacted by Alzheimer’s, enabled Columbia, Maryland-based Splaine Consulting, a nationally recognized health policy firm, to pull together the content for the State Alzheimer’s Plan. More than 30 recommendations are detailed in this 35-page plan to combat the devastating mental disorder which calls for the implementation of three main recommendations.

The updated State Plan provides Rhode Island with the framework to cooperatively address the full range of issues surrounding Alzheimer’s and other dementias. It will be the blueprint that allows us to take unified, targeted action against the disease, says Lieutenant Governor Daniel McKee McKee, who serves as chair of the state’s Long-Term Care Coordinating Council (LTCCC).

McKee’s LTCCC served as the organizational umbrella for a workgroup, including the Alzheimer’s Association– Rhode Island Chapter, the state’s Division of Elderly Affairs, researchers, advocates, clinicians and caregivers oversaw the development of the newly released State Plan.

“Our updated plan will also position the state, local small businesses and nonprofits to take advantage of federal and other funding opportunities aimed at fighting Alzheimer’s disease,” says McKee.

“Unless we move quickly to address this crisis and find better treatments for those who have it, these costs will grow swiftly in lock step with the numbers of those affected, and Alzheimer’s will increasingly overwhelm our health care system. We must decisively address this epidemic,” says Donna M. McGowan, Executive Director of the Alzheimer’s Association–Rhode Island Chapter, who came to the May 7 news conference on Smith Hill to put Alzheimer’s on the General Assembly’s policy radar screen.

Taking Bold Actions to Confront Alzheimer’s Epidemic

“State government must address the challenges the disease poses and take bold action to confront this crisis now. Alzheimer’s is a growing crisis for our families and the economy. That’s why we are unrelenting advocates for public policy that advances research and improves access to care and support services,” says McGowan.

“Alzheimer’s disease and its impact on society is not only a growing public health concern, it very well may be the next biggest public health emergency that we as policymakers need to address,” said Rep. Ackerman. “We’ve already begun crafting legislation that will establish a program in Rhode Island to address the disease,” she says.

Rep. Ackerman used the Alzheimer’s news conference as a bully pulpit, calling on hospitals, researchers, medical professionals, state agencies, and state law makers to act swiftly to address the looming public health crisis.

“There are many factors to be considered in the great work ahead of us,” Rep. Ackerman said. “From early detection and diagnosis, to building a workforce capable of handling the unique health care needs of Alzheimer’s patients. This is something that will take a lot of effort and a lot of time. Now is the time to get to work on this,” she notes.

Like Rep. Ackerman, Sen. Coyne called for the General Assembly to endorse the State Alzheimer’s Plan and also supported Shekarchi’s legislative proposal, too. She also promoted a bill that she put in the legislative hopper that would allow spouses to live with their partners in Alzheimer’s special care units. Allowing couples to live together would help maintain patients’ relationships, connections and personal dignity, she said.

Rose Amoros Jones, Director of the Division of Elderly Affairs(DEA), noted that the power to the Alzheimer’s Association – Rhode Island Chapter’s Advocacy Day creates connections to people that can influence policy and shine light on the supports and information that families need. “Connection is a core value at DEA – as is choice, she said.

Sharing personal stories, Melody Drnach, a caregiver residing in Jamestown, talked about the challenges of taking care of her father with dementia. From her personal caregiving experiences, she agrees with the updated plans assessment that Rhode Island is dramatically under-resourced to address today’s needs.

Marc Archambault of South Kingstown, who has been diagnosed with the disease, came, too, talking about his efforts to cope with the devastating disorder.

At press time, both Rep. Shekarchi and Rep. Ackerman’s Alzheimer’s proposals have been heard at the committee level and have been held for further study, some call legislative purgatory.

Alzheimer’s Impacts Almost Everyone

The devastating impact of Alzheimer’s may well touch everyone in Rhode Island, the nation’s smallest state. Everyone knows someone who either has Alzheimer’s or dementia or is a care giver to these individuals. It’s time for the Rhode Island General Assembly to endorse the State’s Alzheimer’s Plan especially with no fiscal cost. We need a battle plan now more than ever to effectively deploy the state’s resources to provide better programs and services to those in need and to support caregivers.

Call your state representatives and Senators and urge that H 5569 and S 310 are passed and sent to Governor Gina Raimondo to be signed. For contact information, call Eric Creamer, Director of Public Policy and Media Relations, Alzheimer’s Association – Rhode Island Chapter, (401) 859-2334. Or email ercreamer@alz.org.

Advertisements

McKee to Unveil Updated State Alzheimer’s Plan

Published in Woonsocket Call on February 10, 2019

Seven months ago with the hiring of Michael Splaine and Kate Gordon of Splaine Consulting, a nationally recognized health policy firm that has provided content matter expertise to over two dozen state Alzheimer’s plans, Lt. Governor Daniel J. McKee, who serves as chair of the state’s Long-Term Care Coordinating Council, rolled up his sleeves to begin his legislative charge to update the 2013 state Alzheimer’s plan.

The hiring of the Columbia, Maryland-based consultants was made possible by two grants totaling $30,000 given by the Tufts Health Plan Foundation and Rhode Island Foundation. When announcing the successful fundraising effort to raise those monies, McKee observed, “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 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,” says McKee, noting that it is one of the most challenging public health issues facing Rhode Island today. “With the number of affected Rhode Islanders projected to rise to 27,000 by 2025, elected leaders, advocates, caregivers, clinicians and researchers must come together to take unified, targeted action,” he says.

The compilation of the plan is the result of collaboration between McKee, the Alzheimer’s Association Rhode Island Chapter and the state’s Division of Elderly Affairs (DEA). In 2012, the General Assembly directed the Long-Term Care Coordinating Council to serve as the organizational umbrella for a work group that would oversee the development of the plan. In 2013, the state’s five-year Alzheimer’s plan was published. Last year, efforts to update it began.

Last July under the leadership of McKee, Splaine and Gordon worked closely with the Alzheimer’s Association Rhode Island Chapter, DEA, researchers, advocates, clinicians and caregivers sitting on the Lieutenant Governor’s Executive Board on Alzheimer’s,to develop a community-focused strategy for the 2019 State Plan on Alzheimer’s disease and Related Disorders. Over a six-week period, that group held 23 town hall meetings, conducted 45 expert interviews and surveyed (in both England and Spanish) more than Rhode Islanders impacted by Alzheimer’s.

The Official Release…

On Feb. 26 at a press conference in the State Library at 3:30 p.m., McKee will join Sen. Cynthia A. Coyne (D-Barrington) to officially unveil the plan, Rhode Island’s official roadmap to combat the growing Alzheimer’s epidemic. Coyne will announce the introduction of a Senate resolution on behalf of McKee to officially adopt the plan. (House staff are still reviewing the updated plan. There is no House sponsor at this time)

Coyne’s resolution follows her introduction of legislation to create a Rhode Island program to address Alzheimer’s disease within the Department of Health (DOH). The bill would also create an advisory panel to review and make recommendations to improve the state policies, research and care.

Once the Rhode Island General Assembly approves the plan, the Long-Term Care Coordinating Council’s executive board will seek legislative and regulatory changes to carry out its bold set of recommendations for improving supports to those afflicted by Alzheimer’s and other dementias. More than 30 recommendations are detailed in the 35-page plan, which calls for the implementation of three main recommendations.
In order to keep the plan from sitting on a dusty bureaucrat’s bookshelf, the first recommendation calls for the creation of one director-level position within DOH to assist in the coordination of its recommendations. The second urges promoting Alzheimer’s disease and related dementia research opportunities of all types, including federal opportunities to a broad group of Ocean State researchers. Finally, the third calls for the inclusion of brain health in existing publicly-funded promotion and chronic disease management activities.
Many of the recommendation can be easily implemented without additional state funding or legislative approval, says McKee. But, for those that may require state funding, he plans to make it a priority to lobby for those monies.

Taking a Close Look

Maureen Maigret, co-chair, state’s Long-Term Care Coordinating Council, says, “It is terrific to have the plan update completed as it provides direction to our state government leaders and other persons in key positions to proceed with implementation of the recommendations, which can have such far-reaching impacts on the many thousands of individuals with neuro-cognitive conditions and their dedicated caregivers, both those who are unpaid and those in the paid work force.”

Maigret notes that the updated plan’s recommendations also call for assisting family caregivers who provide the vast majority of care for persons with Alzheimer’s and related dementias, expanding subsidies for home and community care services offered by the state’s Division of Elderly Affairs, and making family caregiver support services part of the Medicaid program.

According to Maigret, one issue not mentioned in the updated plan is the need for increasing state funding for the DEA’s respite care program, which has a waiting list. “This is an important program that gives caregivers small subsidies to purchase ‘care breaks.’ Our Aging in Community Subcommittee and the AARP and Senior Agenda Coalition will all be advocating to restore state funds to this program (in the upcoming legislative session),” she says.

“The Alzheimer’s State Plan is a thorough blueprint to address the growing Alzheimer’s crisis by creating an infrastructure and accountability that will help build dementia-capable programs,” said AARP Rhode Island State Director Kathleen Connell. “We applaud the work that has gone into the report and the continuing efforts to address Rhode Island’s growing needs. We are especially encouraged to see that the plan supports community education about caregiver health and caregiver rights under the CARE Act, which is legislation that AARP championed in the General Assembly. AARP also encourages and supports age-friendly communities, which includes dementia-friendly awareness and resources so that people of all abilities can thrive as they age.”

Sen. Coyne added, “Alzheimer’s impacts tens of thousands of Rhode Islanders, and we need a coordinated strategy to improve education among the public and training for providers, and to promote research opportunities. This plan provides a strategic framework for moving forward to bring positive policy change where it is needed.”

See you at the press conference.

For details about the press conference and the Alzheimer’s State Plan, contact Andrea Palagi, Communications Director, Office of Lt. governor Daniel J. Mckee at
Andrea.Palagi@ltgov.ri.gov.

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.