Bills Passed to Assist Rhode Island’s Seniors, Disabled

Printed in the Woonsocket Call on July 7, 2019

With the dust settling after the adjournment of the Rhode Island General Assembly’s 2019 legislative session on June 30, 2019, Rhode Island Governor Gina Raimondo halfheartedly signed the state’s 2020 fiscal year $9.9 billion budget into law.

The newly enacted budget closes a $100 million budget gap while avoiding new taxes for businesses, fully funding the state’s education aid formula, continuing to phase-out the car-tax, maintaining fiscal support for municipalities. And, State lawmakers did not forget older Rhode Islanders and disabled persons, putting tax dollars into programs assisting them.

Included in the state budget signed by Raimondo is $499,397 to fund the Rhode Island Livable Home Modification Grant Act that was introduced by Rep. Joseph M. McNamara, D-Warwick, Cranston and Sen. Walter S. Felag Jr., D -Bristol, Tiverton, Warren.

The grant allows eligible homeowners and renters to retrofit their residence to nationally recognized accessibility standards and receive 50 percent of the total sum spent, up to $5,000, to retrofit their existing residence.

The intent of this state program is to assist older Rhode Islanders and disabled persons to stay safely in their homes longer rather than being admitted to costly nursing homes, which costs taxpayers millions of dollars each year in Medicaid costs. With the graying of state’s population, there is a need for housing that is safe and adapted to the needs of their older occupants. (The Livable Home Modification Grant Application and Post-Retrofit Claim form can be found at http://www.gcd.ri.gov.)

Meanwhile, aging advocates gave the thumbs-up to Rhode Island lawmakers who eliminated a sunset provision in the state budget for a program that provides fare-free bus passes to low-income seniors and elderly Rhode Islanders, making this program permanent.

Awaiting the Governor’s Signature

The General Assembly passed legislation (S 0691A, H 6219), introduced by Senator Frank S. Lombardi, D-Cranston and Rep. Evan P. Shanley, D-Warwick, that would help caregivers to build onto their houses to provide space for relatives. The measure now moves to the governor’s office for consideration.

The passed legislation expands the definition of “family member” for purposes of zoning ordinances to include child, parent, spouse, mother-in-law, father-in-law, grandparents, grandchildren, domestic partner, sibling, care recipient or member of the household.

Under the legislation, the appearance of the home would remain that of a single-family residence with an internal means of egress between the home and the accessory family dwelling unit. If possible, no additional exterior entrances would be added. Where additional entrance is required, placement would generally be in the rear or side of the structure.

This legislative session, State lawmakers also approved legislation sponsored by Sen. Adam J. Satchell D- West Warwick and Rep. Robert E. Craven, D- North Kingstown, to establish a formal process recognizing “supported decision making,” a structure of support for disabled or aging individuals.

The legislation, which now heads to the governor’s desk, establishes a system of personal support that is less restrictive than guardianship to help individuals maintain independence while receiving assistance in making and communicating important life decisions. It is aimed at providing an alternative with more self-determination for individuals who are aging or who have developmental or intellectual disabilities.

Under the bill (2019-S 0031A, 2019- H5909), Rhode Islanders would be able to designate another person, or a team of people, as a supporter who would help them gather and weigh information, options, responsibilities and consequences of their life decisions about their personal affairs, support services, medical or psychological treatment, education and more. The supporter would also help the individual communicate the person’s wishes to those who need to know.

The legislation creates a legal form that establishes the agreement between individuals and their supporters, and designates the types of decisions with which the supporter is authorized to help. The bill establishes that decisions made with support under such an agreement are legally valid, and allows supporters to assist with the accessing of an individual’s confidential health and educational records.

It also requires that any other person who is aware that an individual is being abused, neglected or exploited by their supporter is obligated to report that abuse to the proper authorities.

Protecting Rhode Island’s Seniors and Disabled from Financial Exploitation

Sen. Valarie J. Lawson, D-East Providence and Rep. Joe Serodio’s D-East Providence, legislation (2019-0433A, 2019-H 6091A), “Senior Savings Protection Act,” was passed by the General Assembly and now heads to the Governor’s desk for signature.

The act would require certain individuals to report the occurrence or suspected occurrence of financial exploitation of persons who are age 60 and over or those with a disability between the ages of 18 and 59 years old.

According to the legislation, if a qualified individual, a person associated with a broker-dealer who serves in a supervisory, compliance or legal capacity, believes that financial exploitation is taking place, or being attempted, the individual must notify Rhode Island’s Department of Business Regulation and Division of Elderly Affairs, and law enforcement. The individual may also alert immediate family members, legal guardians, conservators, or agents under a power of attorney of the person possibly being financially exploited.

The legislation also calls for the Department of business Regulation and the Division of Elderly Affairs to develop websites that include training resources to assist in the prevention and detection of financial exploitation against Rhode Island’s seniors and disabled.

Combating Alzheimer’s Disease

With the number of persons with Alzheimer’s Disease expected to increase in the coming years, the General Assembly approved bills to better support Rhode Islanders affected by debilitating mental disorder and to protect against elder abuse. There are an estimated 23,000 Rhode Islanders age 65 and older living with Alzheimer’s disease. In just six years, the number is expected to increase to 27,000.

The Rhode Island General Assembly approved legislation (S 20223, 2019-H 5178) sponsored Sen. Cynthia A.Coyne, D-Barrington, Bristol, East Providence, and House Majority Leader K. Joseph Shekarchi, D-Warwick, to establish a program within the Department of Health dedicated to Alzheimer’s disease, and create a 13-member advisory council that would provide policy recommendations, evaluate state-funded efforts for care and research and provide guidance to state officials on advancements in treatment, prevention and diagnosis. The bill is based on legislation signed into law last year in Massachusetts.

The legislation requires the Department of Health to assess all state programs related to Alzheimer’s, and maintain and annually update the state’s plan for Alzheimer’s disease. It would also require the Department of Health to establish an Alzheimer’s disease assessment protocol specifically focused on recognizing the signs and symptoms of cognitive impairments, and appropriate resource information for effective medical screening, investigation and service planning. The legislation would also require caseworkers working with the Department of Elderly Affairs to become familiar with those protocols. Additionally, the legislation would require a one-time, hourlong training on diagnosis, treatment and care of patients with cognitive impairments for all physicians and nurses licensed in the state.

Most importantly, adoption of the legislation would enable Rhode Island to qualify for federal funding that is available to help states with their efforts to support those with Alzheimer’s disease.

Also gaining final Rhode Island General Assembly approval was legislation (2019-S 0302A, 2019-H 5141) sponsored by Sen. Coyne and Rep. Joseph M. McNamara, D-Warwick, Cranston, to allow the spouses or partners of patients residing in Alzheimer’s or dementia special care unit or program to live with them, even if they do not meet the requirements as patients-themselves.

Finally, Sen. Coyne, who lead the Senate’s Special Task Force to Study Elderly Abuse and Financial Exploitation, successfully spearheaded an effort this session to pass legislative proposals to beef up the state’s efforts to combat elder abuse, that is growing and vastly under reported. For details, go to herbweiss.wordpress.com, to access the June 30 commentary, “Senate Task Force Calls for Action to Combat State’s Growing Elder Abuse.”

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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.

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.