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.

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Questions Raised About the State’s New Independent Provider Program

Published in the Woonsocket Call on July 15, 2018

In the waning days of the 2018 legislative session, the Rhode Island General Assembly passed legislation (S 2734 Sub A, H 7803 Sub A) that establishes in the Ocean State the “Independent Provider” (IP) model of at-home care, which allows consumers to hire and manage caregivers of their own choice while the state takes on certain responsibilities, such as setting caregivers’ wages, qualification standards and hours. With Gov. Gina M. Raimondo’s signature, the legislation became law on June 29th.

The enacted legislation is backed by the Rhode Island Campaign for Home Care Independence and Choice, a coalition that includes the Senior Agenda Coalition, RI Working Families Party, RI Organizing Project, District 1199 SEIU New England, RI AFL-CIO, Economic Progress Institute and the RI Chapter of the National Organization of Women (NOW). But, although on the losing side of the legislative debate the Rhode Island Partnership for Home Care continues to express its concern about the impact on the delivery by IPs to seniors and persons with disability.

Overwhelming Support on Smith Hill

The health care legislation, sponsored by Senate Majority Whip Maryellen Goodwin (D-Providence) and Rep. Christopher R. Blazejewski (D-Providence), easily passed both the House and Senate Chambers. The Senate Committee on Labor unanimously passed the measure by a 9-0 vote. By a count of 33-0, the legislation easily passed on the Senate floor. Meanwhile, in the other chamber, the House Committee of Finance put its stamp of approval on the measure by a vote of 13-0, with the legislation ultimately passing of the House floor by a vote of 60-11. But, because the House amended the bill (in committee and on the floor), it had to come back to the Senate for consideration again. The Senate vote on the revised legislation was 28-3.

In a statement announcing the new law, Goodwin and Blazejewski, say “By increasing both availability and quality of at-home care options, the new law’s ultimate goal is to move Rhode Island toward greater use of care in the community rather than in nursing facilities, since at-home care is both more comfortable and satisfying for consumers and less expensive than nursing facilities.”

“Presently, Rhode Island ranks 42nd in the nation in terms of investment in home care. Ninety percent of older Americans prefer home care. Not only is it more comfortable for seniors, it’s more cost-effective, as we’ve seen in states like Massachusetts. High-quality home care is what people want, and it saves money. I’m proud to support this effort to help make excellent home care available to more Rhode Islanders,” said Goodwin.

Adds, Blazejewski, “There is little question that people prefer to stay in their homes as long as possible. Particularly now, as the over-65 population in our state is rapidly expanding, Rhode Island must shift more of our long-term care resources toward supporting home care. Our legislation will help provide more options for home-based services, enhance access to them and establish standards that assure high-quality care.”

Hiring, Finding and Managing a Caregiver

Currently around 77 percent of Medicaid funding for long-term services and supports goes to nursing facility care rather than community-based care. Those who use community-based care generally go through agencies or find, hire and manage a caregiver on their own. This bill would create a third option.

Under the Independent Provider model, which has been in place in Massachusetts since 2008, consumers would still be the direct employer who determines when to hire or fire an employee, but the state would take on responsibilities for maintaining a registry of qualified caregivers, and would set parameters such as rates, qualifications and hours.

While the new law stipulates that they are not employees of the state, it would give home care workers the right to collectively bargain with the state over those parameters. Allowing them to organize would ensure that this otherwise dispersed workforce has a unified voice and a seat at the table to tackle the issues facing Rhode Island’s long term services and supports system, said the sponsors.

Consumers in states with independent provider models report higher levels of client satisfaction and autonomy, received more stable worker matches, improved medical outcomes, and reduced unmet need with agencies delivering fewer hours of care relative to the needs of the consumer.

In testimony supporting the health care legislation, Director Charles J. Fogarty, of Rhode Island’s Division of Elderly Affairs (DEA), told lawmakers that the health care legislation supports two goals of DEA, first it would enable elderly and disabled Rhode Islanders who are medically able to stay at home and second, it would address Rhode Island’s direct service provider workforce shortage.

Fogarty said it’s critical for older adults and people with disabilities to have access to the quality of care that is right for them. “In some cases, care from an independent provider they know and trust will best meet their needs to remain independent. In other cases, a home care agency will be the right fit. And for some, particularly those with complex medical needs, our quality nursing homes are the right option,” he said.

When quizzed asked about The Rhode Island Health Care Association’s position, Virginia Burke, President and CEO, recognized the value of home care in the state’s long-term care continuum but stressed that residents in the state’s nursing facilities “are too sick or impaired to mange at home.” She said, “Our only concern with this proposal is the suggestion that it could drain Medicaid funding from the frailest and most vulnerable among our elders in order to pay for a new Medicaid service. Surely our elders deserve good quality and compassionate care in all settings.”

Calling for More Education, State Oversight of IPs

While most who testified before the Senate and House panel hearings came to tout the benefits of bringing IP caregivers into the homes of older Rhode Islanders and persons with disabilities, Nicholas A. Oliver, Executive Director of the Rhode Island Partnership for Home Care, sees problems down the road and calls the new policy “duplicative and costly.”

In written testimony, if the legislation is passed Oliver warns that Rhode Island will be authorizing untrained and unsupervised paraprofessionals to deliver healthcare to the state’s most frail seniors without Department of Health oversight, without adherence to national accreditation standards for personal care attendant service delivery and without protections against fraud, waste and abuse.

Furthermore, his testimony expressed concern over the lack of oversight as to the quality of care provided by IPs to their older or disabled clients. Although the legislation called for supervision from the Director of Human Services (DHS), this state agency does not have the mandated legislative authority to investigate IPs to ensure that patient safety is met and the recipients of care are protected against harm in their homes. Nor does it require daily supervision for adherence to the patient’s authorized plan of care, he says, noting that is a requirement for licensed home health and hospice agencies.

Oliver observes that the legislation does not require IPs to receive the same level of intensive training that Certified Nursing Assistances (CNAs) receive from their home health care and hospice agencies. While the state requires all CNAs to complete 120 hours of initial training, pass a written and practical examination, become licensed by the Department of Health and maintain a license by completing a minimum of 12 hours of in-service training annually, the legislation only requires IPs to take three hours of generalized training and no continuing in-service training is required.

CNAs deliver the same personal care attendant services as the IPs but have a specific scope of practices that they must follow as regulated by the Department of Health and their licensure board while IPs do not have these requirements, says Oliver.

Finally, Oliver says that “to ensure quality of care [provided by home care and hospice agencies], CNAs are supervised by a registered nurse (RN) that is actively involved in the field and who is available to respond to both the patient’s and the CNA’s needs on-demand to reduce risk of patient injury, harm or declining health status and to reduce risk of CNA injury, harm or improper delivery of personal care.” IPs do not have this supervision., he says.

Safe guards are put in place by home health and hospice agencies to ensure the safety of patient and direct care staff, says Oliver, noting that these agencies are nationally accredited by The Joint Commission, the Community Health Accreditation Program (CHAP) or the Accreditation Commission for Health Care (ACHC) in partnership with the Department of Health for compliance of state and federal rules and regulations, as well as national clinical standards for personal care attendant service delivery.

With the Rhode Island General Assembly bringing IPs into the state’s health care delivery system, the state’s Executive Office of Health and Human Services, granted authority by the legislation to develop the program, might just consider establishing a Task Force of experts to closely monitor the progress of the new IP program’s implementation to ensure that quality of care is being provided and to make suggestions for legislative fixes next year if operational problems are identified. Unanticipated consequences of implementing new rules and regulations do happen and every effort should be state policy makers that this does will not happen in Rhode Island with the creation of the new IP program.

To watch Oliver talk about the Rhode Island Partnership for Home Care’s opposition to the enactment of IP legislation that would increase state involvement in the home care sector, go to http://m.golocalprov.com/live/nicholas-oliver.

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.