November 12, we hosted a free "Choosing to Care" family caregiver breakfast with Amy Goyer. AARP's national spokesperson, author (and caregiver to both of her parents), Amy shared her experince and provided tips that can make a real difference.
The Rhode Island Livable Home Modification Grant program offers qualifying applicants (homeowners as well as renters) up to $5,000 for home modifications benefiting those in need of care, as well as the disabled. Livable Homes Grant Booklet , created in part through advocacy efforts by AARP Rhode Island and its legislative volunteers, the Governor's Commission on Disabilities and a coalition of community partners, helps the disabled as well as both caregivers and those family members and loved ones they care for. Apply now; projects must be completed by June 30, 2020. Will the program be extended?
"This grant program allows many people to remain in their home," said AARP Rhode Island State Director Kathleen Connell. "Sometimes, installing wheelchair ramps, widening a doorway or converting a bathtub to a walk-in shower can make all the difference for the caregiver and the person they assist. Unfortunately, many families are already financially stressed by out-of-pocket caregiving expenses.
"It also is important to emphasize that all taxpayers benefit when people with chronic illness or aging disabilities can stay in their homes, rather than move into state Medicaid-supported nursing homes. We all win when we support caregivers.
"We thank legislators who made this possible. We know it will make a difference for many Rhode Islanders."
RI Earned Paid Sick Leave Is Now the Law
Caregivers in particular will benefit by the new law that requires businesses employing 18 or more workers to provide earned paid sick leave. This includes time off to care for family members or loved ones. Accrual of qualifying hours worked began July 1 2018. The law, championed by AARP Rhode Island and a determined statewide coalition of advocates, was passed by the General Assembly last year. An earlier RI workplace infographic final draft provided a strong impetus for approving the bill.
Employees accrue one hour of paid sick leave for every 35 hours worked. Workers can begin to accrue paid sick leave July 1, or the first day after they start employment, if hired after July 1. If you believe you qualify, you should consult with your employer. The HR/payroll company Paylocity.com has posted clear and informative guidelines, which you can review here.
We CARE! In 2019 , we mark an important AARP advocacy milestone – the fifth anniversary of the enactment of the very first CARE Act! Oklahoma was the first state to pass the CARE Act in 2014, and since then, another 40 AARP state offices have sought and won passage in their states or territories. In July 2018, Missouri passed the CARE Act, making the Show Me State the 40th state or territory to enact the CARE Act, and already this year people across the country are seeing some amazing successes and promising movement towards passage by additional state offices.
The CARE Act in Rhode Island
Passed in 2015 and put into effect in March of 2017, the CARE (Caregiver Advise, Record and Enable) Act requires hospitals to identify caregivers in three clear steps.
Upon admission, a hospital must provide patients with the opportunity to designate a caregiver and have that caregiver’s contact information entered into the patient’s medical record.
The hospital then must notify and alert the family caregiver if his/her loved one is being discharged home or transferred to another facility.
The CARE Act requires hospitals to, prior to the patient’s discharge, provide the family caregiver with instructions on how to perform after-care medical and nursing tasks that the patient will need once they return home.
When accompanying a loved one being admitted to the hospital, caregivers should ask about these new responsibilities. As a reminder, download AARP Rhode Island's free CARE Act Wallet Card and carry it with you.
ER Trips Often Point to Larger Health Problems for Older Patients. Researchers say it should be a wake-up call to caregivers and families.Read the story...
VICTORY for America’s 40 million family caregivers! The RAISE Family Caregivers Act (not to be confused with the CARE Act, below) is now the law of the land. This bipartisan bill will focus on the needs and values of America’s greatest support system, family caregivers. Read more...
Rhode Island legislators added to list of “Capitol Caregivers”
AARP Honors State Elected Officials for Helping Family Caregivers
To recognize their work to support family caregivers in Rhode Island, AARP names Senator Roger Picard and Representative Brian Patrick Kennedy 2016 “Capitol Caregivers.” These elected officials have advanced policies to help family caregivers who are making it possible for older Rhode Islanders to live independently at home—where they want to be.
“AARP thanks these members of the General Assembly for championing passage of legislation that supports caregivers,” said AARP Rhode Island State Director Kathleen Connell. “They provided integral leadership to pass bills in 2016 and helped make the huge responsibilities of family caregivers in Rhode Islanders a little bit easier.”
Sen. Picard and Rep. Kennedy join former Senate President Teresa Paiva, Weed House Speaker Nicholas A. Mattiello, Senators Gayle L. Goldin and Joshua Miller and Representatives Eileen S. Naughton and Joseph M. McNamara who were named 2015 Capitol Caregivers last March.
Senator Picard is honored for his sponsorship of 2016 legislation formally known as “An Act Relating to Towns and Cities – Zoning Ordinances.” The new law allows the owner of an owner-occupied single family home to build an accessory dwelling unit to accommodate a family member who is 62 or older without obtaining a special permit from the town or city in which the property is located. The owner will still need to meet setback and other local requirements.
The legislation addresses the projected shortage of housing for senior citizens. Supporters believed that accessory dwelling units could be a good and affordable alternative to assisted living residences or nursing homes but local zoning ordinances imposed too many barriers for families to build this type of housing. The new law streamlines the requirements and makes them more consistent.
Rep. Kennedy is recognized for his sponsorship of the Telemedicine Coverage Act, which paves the way to easier access to the medical help that caregivers need while at the same time letting doctors dispense proper medical assistance, through the use of technology, without leaving their location.
The Act will allow doctors and patients to use technology, where appropriate, to see and talk to each other even though the patient is not in the doctor’s office. Telemedicine can be another tool that a doctor can use to help patients to stay healthy, recover from illness, or continue to live in the best way that is medically possible.
Telemedicine holds the promise of allowing all of us to get help for ourselves and our loved ones in ways that we have not been able to in the past.
Family caregivers carry a huge responsibility. According to AARP’s Public Policy Institute, at any time during the year, an estimated 148,000 Rhode Island caregivers step up to provide 142 million hours of care for an aging parent or loved one, helping them to live independently in their own homes. Based on this 2009 data, the care that these family caregivers provide is valued at nearly $1.9 billion per year.
They help with bathing and dressing, meal preparation, managing finances, transportation, grocery shopping and more. Today, many family caregivers even perform medical tasks like wound care, injections, and complex medication management.
“Family caregivers are the backbone of Rhode Island’s care system,” added Connell. “And they need our support. And a very important component of meeting their needs stems from legislative leaders who seize the opportunity to make a difference.”
Rep. McNamara, Sen. Felag join AARP in announcing introduction of Livable Home Tax Credit Act
STATE HOUSE — Rep. Joseph M. McNamara (D-Dist. 19, Warwick, Cranston) and Sen. Walter S. Felag Jr. (D-Dist. 10, Bristol, Tiverton, Warren) joined with representatives of AARP Rhode Island at the State House today to announce the introduction of the Rhode Island Livable Home Tax Credit Act.
The legislation ( 2017-H 5778/ 2017-S 0477) would provide a tax credit against the state’s personal income tax for taxpayers who purchase new residences or retrofit residences which meet or are modified to meet standards that make the residences more accessible for elderly and disabled persons.
“As Rhode Island’s population ages, it’s important for us to do what we can to ease the burden of those who have shouldered the burden all their lives,” said Representative McNamara. “From building our country to fighting our wars, senior citizens have made the investment in time, money and untiring devotion to their families, their employers and their country. The least we can do is to make things a little easier at tax time and by helping to accommodate their needs in their later years.”
The act is aimed at helping Rhode Island’s aging population stay safely in their homes longer rather than overburdening the state’s nursing homes, which costs taxpayers millions of dollars each year in Medicaid costs. With the state’s aging population rising each year, there is a distinct need for housing that is safe and adapted to the needs of the elderly.
“The elderly and disabled population in our state have specific needs within their homes that can unfortunately be extremely expensive for themselves and their caregivers. This tax credit would help alleviate the costs to keep our aging and disabled populations in their homes and communities while also saving the state’s taxpayers millions of dollars in nursing home Medicaid costs,” said Senator Felag.
The tax credit would apply for family members and caregivers who spend thousands of dollars out of pocket to care for and adapt existing homes for elderly family members. Adaptations to homes that would qualify pertain to fixes that would help reduce elderly falls within the home and other changes that would keep the elderly and disabled in their communities for longer periods of time.
“AARP works hard to support caregivers, and the family and loved ones they care for,” said AARP Rhode Island State Director Kathleen Connell. “The General Assembly has a track record of sharing this responsibility and demonstrated its commitment with passage of Paid Family Leave and Uniform Guardianship legislation, the CARE Act, implemented just this month, and other key legislation. We believe the Livable Homes bill will win wide support among lawmakers and, upon passage, add to the Assembly’s legacy of helping caregivers and their families.
“A recent AARP Public Policy Institute study found that, nationally, 68 percent of family caregivers say they have to use their own money to help provide care to their relative. Some 39 percent said they feel financially strained,” Connell added. “As costs increase, we must continue to address this challenge. As we hope to demonstrate with this bill, when we work together we can make a difference for caregiver families.”
Click on the image below to watch the news conference on Capitol TV
The House version of the bill is cosponsored by Representatives Julie Casimiro (D-Dist. 31, North Kingstown, Exeter), Lauren H. Carson (D-Dist. 75, Newport), Camille F.J. Vella-Wilkinson (D-Dist. 21, Warwick) and Joseph J. Solomon Jr. (D-Dist. 22, Warwick)
The Senate version of the bill is cosponsored by Sen. Michael J. McCaffrey (D-Dist. 29, Warwick), Sen. Joshua Miller (D-Dist. 28, Cranston, Providence), Sen. Paul V. Jabour (D-Dist. 5, Providence) and Majority Whip Maryellen Goodwin (D-Dist. 1, Providence).
Hospitals are getting the message: Caregivers deserve comfort and support
THE BRONX, NEW YORK -- Clutching a railing for balance, 89-year-old Alan Epstein searched the hospital waiting rooms for families in distress. He paused when he came across a young woman standing alone in the hallway, making a phone call about her grandfather's faltering health.
"Are you aware of the caregiver support center?" Epstein asked when she got off the phone. Just around the corner from the sterile waiting room, he told her, there's a refuge with hot coffee, soft chairs and pleasant company.
Epstein, an energetic former financial broker who still plays tennis twice a week, knows the hallways well: His wife was a patient at the hospital, Montefiore Medical Center in New York City, before she died. Now he's one of 30 volunteers who make their rounds there, recruiting stressed-out families to visit a small suite set aside for their comfort and emotional support. Read the full USA Today story.
New Study Looks at Better Ways to Instruct Caregivers
By Herbert Weiss Published in Woonsocket Call on October 2, 2016
A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.
AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.
Gathering Advice from Caregivers
In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.
“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.
According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.
The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.
In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.
A New Way of Teaching
For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.
“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.
Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.
Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].
“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.
CARE Act Gives More Info to Rhode Island Caregivers
“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.
“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.
“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up. “In short, we need to listen to caregivers and all work together to support the work they do.”
Another caregiving report provides information that supports AARP’s multi-year efforts to improve the lives of family caregivers and their loved ones. Families Caring for an Aging America, a comprehensive, evidence-based, peer-reviewed report, was compiled by a committee of national experts, and published by the National Academies of Sciences, Engineering, and Medicine.
The committee’s charge was to assess the prevalence and nature of family caregiving of older adults, examine available evidence of the effectiveness of family caregiver programs and supports, and to recommend policies to address the needs of family caregivers.
The findings of the 340 page report reinforce AARP’s emphasis on the importance of family caregivers, including calling upon the next Presidential administration to take steps to address the health, economic, and social issues facing family caregivers of older Americans. Other report recommendations include:
Ensuring that healthcare providers recognize a family caregiver’s presence, including recording the family caregiver’s name in the medical record, and engaging and sharing information with the family caregiver in a culturally appropriate manner;
Developing health care providers’ professional competencies to assist their interaction with and training of family caregivers, including viewing family caregivers as a partner in meeting the care needs of a loved one;
Increasing funding for programs and pursuing policies that alleviate family caregiver economic hardships for family caregivers, such as making improvements to caregiver workplace leave policies and considering caregiver tax credits to help relieve caregiver financial stress;
Encouraging the Secretaries of Health and Human Services, Labor, and Veterans Affairs to work with leaders in health care and LTSS delivery, technology, and philanthropy to establish a public−private, multi-stakeholder innovation fund for research and innovation to accelerate the pace of change in meeting the needs of caregivers and their families; and,
Learning from other states’ experiences to implement effective caregiver supports, with a specific mention of the CARE Act as one such initiative for states to consider.
AARP Honors "Capitol Caregivers" at State House Presentations
To recognize their work to support family caregivers in Rhode Island, AARP names Senate President Teresa Paiva, Weed House Speaker Nicholas A. Mattiello, Senators Gayle L. Goldin and Joshua Miller and Representatives Eileen S. Naughton and Joseph M. McNamara as 2015 “Capitol Caregivers,” a bipartisan group from 25 states. These elected officials have advanced policies to help family caregivers who are making it possible for older Rhode Islanders to live independently at home—where they want to be. Click the image below to watch members of the House being honored.
During ceremonies in the Senate Lounge, Senate President Teresa Paiva Weed praised the CARE Act and the support and benefits it brings to caregivers and their families.
The CARE Act, AARP’s signature state caregiving advocacy effort, made a significant impact in 2015 with 16 states and Puerto Rico passing the bill, bringing the total number of CARE Act enactments to 19 since 2014. In addition, a total of 22 states are expected to engage in CARE Act efforts in 2016. So far this year, a CARE Act bill has been introduced in Nebraska and Washington, and CARE Act bills were held over from 2015 in DC, Massachusetts, Michigan, Pennsylvania, Wisconsin, the Virgin Islands, and other states.
NEW! AARP Rhode Island testifies before the General Assembly, urging passing of a Telemedicine Coverage bill which would remove barriers to accessing appropriate healthcare for patients as well as serve as a useful tool for family caregivers helping loved ones stay in their homes. Read more...
The Caregiving Innovation Frontiers study found that, by 2020, 117 million Americans are expected to need assistance of some kind—yet the overall number of caregivers is expected to reach only 45 million.
During the same time span, the overall caregiving market is set to grow 13 percent, resulting in an aggregate revenue opportunity of $279 billion, with 80 percent being out-of-pocket spending. The report also identified six growth areas that technology companies should embrace.
Kathleen Connell: "Rhode Island joins the national effort that focuses on care, not courts, by removing the barriers that prevent caregivers from providing for their loved ones, regardless of where they live.”
New Uniform Act Good News for Rhode Island Caregivers
By Herb Weiss Woonsocket Call, November 29, 2015
With the quick stroke of her pen, Rhode Island Governor Gina Raimondo signed guardianship legislation into law during the 2015 legislative session that would help Rhode Islanders avoid costly and time-consuming red tape when exercising health care, financial and other legal responsibilities for their out-of-state, elderly loved ones. It takes effect on January 1, 2016. Read more...
August 12, 2015, Gov. Gina Raimondo signs the CARE Act, with bill sponsors Sen. Gayle Goldin and Rep. Eileen Naughton looking on with AARP State Director Kathleen Connell.
Rhode Island Family Caregivers Provide $1.78 Billion in Unpaid Care According to AARP Study
New report reveals stress on family caregivers’ healthand finances; identifies policies to help support caregivers
Family caregivers in Rhode Island provided 124 million hours of care—worth an estimated $1.78 billion —to their parents, spouses, partners, and other adult loved ones in 2013, according to AARP Public Policy Institute’s new report, Valuing the Invaluable: 2015 Update. The total estimated economic value of uncompensated care provided by the nation’s family caregivers surpassed total Medicaid spending ($449 billion), and nearly equaled the annual sales ($469 billion) of the four largest U.S. tech companies combined (Apple, Hewlett Packard, IBM, and Microsoft) in 2013. Read our news release...
WE DID IT: The General Assembly passes the CARE Act!
“We are delighted that – upon the CARE Act becoming law – Rhode Island will join 12 other states that have enacted CARE Act legislation, with bills in three other states awaiting their respective Governor’s signatures,” said AARP State Director Kathleen Connell.
After winning approval earlier in the Senate, the Act was unanimously passed by the House on June 10. Governor Gina Raimondo signed the bill into law on June 19.
“Together, AARP worked with a strong coalition of stakeholders, as well as the House and Senate sponsors, Representative Eileen Naughton, and Senator Gayle Goldin, and the members of the House’s Health, Education and Welfare Committee and the Senate’s Health and Human Services Committee," Connell said.
“The passage of the CARE Act dovetails with the release of Caregiving in the United States 2015, which presents a portrait of unpaid family caregivers today. It specifically addresses vulnerable groups of caregivers who face complex, high burden care situations. They tend to be older caregivers, who had no other option but to take on caregiving duties.
“It is sobering to conclude that in Rhode Island, with its above-average older population, we risk seeing more and more of old sick people caring for older sicker people. Clearly, that’s not a good thing and it needs addressing sooner than later," Connell added.
“One thing we noticed as the CARE Act made its way through the General Assembly was that a number of lawmakers shared their own personal caregiving stories. Some issues are harder to personally identify with than others, but when it comes to caregiving, it’s good to know we have this kind of attention. The report adds data and statistics that should help frame solutions.”
AARP is dedicated to supporting Rhode Island caregivers. At the State House, we are a voice to caregivers and their families. We also are a resource for caregivers and the people they serve.
Today, unpaid family caregivers provide the bulk of care for older Rhode Islanders in part because the cost of long term care remains unaffordable for most middle income families. In Rhode Island more than 148,000 residents help their aging parents, spouses and other loved ones stay at home by providing assistance with bathing and dressing, transportation, finances, complex medical tasks like wound care and injections, and more. The value of this unpaid care totals about $1.9 billion.
“Policy discussions may revolve around data and numbers, but it is people – people’s lives -- we’re really talking about," says AARP Rhode Island State Director Kathleen Connell. "As the state’s population continues to age, caregiving as well as long term care will grow as a critical issue for all Rhode Islanders." We need to move forward with greater urgency for our citizens to feel supported in their caregiving endeavors and assured affordable resources are in place that will grow confidence we all will age with proper available care and the dignity everyone deserves.”
May 6, AARP testimoney before the Rhode Island House Finance Committee, recommending passage of the the CARE Act. AARP Senior Legislative Representative Enzo Pastore's testimony begins at 12:30 into the video; volunteer Ruth Bucci's testimony comes at 26:20.
I’ve recently been helping a friend who has been managing her mother’s transitions from a hospital to a rehab facility and then to another rehab facility that now wants to send her home before she, or her family, are ready.
It reminded me of how tough family caregiving transitions can be. I’ve been through so many of them with my parents and my sister — some smooth, others unexpected and rocky. Read more...
Accelerating the Pace of Change for Caregiving Families
By Lynn Friss Feinberg
Not a day goes by that I don’t meet someone who is caring for a parent, another adult family member or a close friend with a chronic, disabling or serious health condition. This unpaid family care — known as “family caregiving” — is almost universal today as our population ages.