Category Archives for Caregivers

Unpaid Caregiver Care Saves State Money

Published in Woonsocket Call on July 26, 2015

With the graying of state’s population, Ocean State caregivers 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 a new AARP Policy Institute’s report.  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, says the 25 page report.

AARP’s report, Valuing the Invaluable: 2015 Update, noted that family caregiving for relatives or close friends with chronic, disabling, or serious health problems – so they can remain in their home – is nearly universal today.  In 2013, about 134,000 family caregivers in Rhode Island helped another adult loved one carry out daily activities (such as bathing or dressing, preparing meals, administering medications, driving to doctor visits, and paying bills), says the report issued on July 16.

Log on to AARP Rhode Island’s caregiving Web page (www.aarp.org/ricaregiving) to download the report as well as access information on recent caregiver legislation passed by the General Assembly and other resources: www.aarp.org/ricaregiving.

The Difficulty of Caregiving

The AARP report detailed how caregiving can impact a person’s job, finances and even their health, says the researchers.   More than half (55%) of family caregivers report being overwhelmed by the amount of care their family member needs, says the report.  Nearly 4 in 10 (38%) family caregivers report a moderate (20%) to high degree (18%) of financial strain as a result of providing care. In 2014, the majority (60%) of family caregivers had full- or part-time jobs, placing competing demands on the caregivers’ time.

According to AARP Rhode Island State Director Kathleen Connell, AARP’s study on caregiving affirms the state’s record as a trailblazer in the field of caregiving. In 2013, Rhode Island became just the third state to enact paid family leave, which is known as Temporary Caregiver Insurance (TCI). Also in 2013, Rhode Island enacted the Family Caregivers Support Act, which requires a family caregiver to receive an assessment,” she said.

Connell said that this year the Ocean State remained in the forefront of helping caregivers with passage of the Caregiver Advise, Record, Enable (CARE) Act, which calls for hospitals to provide instruction to designated caregivers. Additionally, Rhode Island became the 42nd state to enact the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act. In Rhode Island, a court-appointed guardian can make important decisions across state lines.

“This new report, however, does demonstrate that we need and can do more to assist the many caregivers in our state,” said Connell. “Some of the ways we can help family caregivers include continuing efforts to improve workplace flexibility, respite care, tax credits and home care services,” she says.

Adds Charles Fogarty, Director of the state’s Division of Elderly Affairs (DEA), “This study demonstrates that the backbone of long-term services and supports are family members and informal caregivers.  Quantifying the hours and economic value of caregiving provided by Rhode Island families and informal caregivers raises public awareness of the impact these services have upon Rhode Island’s health system and economy.  It is clear that there is a significant need to support caregivers who, at a cost to their own health and economic well-being, work to keep their family members in the community.”

DEA works with the state’s Aging Disability and Resource Centers and local nonprofits and agencies such as the RI Chapter of the Alzheimer’s Association, Office of Catholic Charities of the Diocese of Providence, local YMCAs and Adult Day Care programs, to provide programming, support groups and information to Rhode Island’s caregivers, according to Fogarty.  “Rhode Island also requires that a caregiver assessment be conducted when a recipient of Medicaid-funded Home and Community Based Services has a caregiver providing support in the home,” he says.

Improving State Support for Caregiving

            Although Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island acknowledges Rhode Island as being a leader with progressive laws on the books supporting caregivers, specifically the Temporary Caregiver Insurance Program, more work needs to be done.

Maigret calls for better dissemination of information to caregivers about what services and programs are available.  “In this day and age we should have a robust Rhode Island specific internet site that offers caregiving information about state specific resources,” she says, noting that too often caregivers “just do not know where to turn to find out about programs like DEA’s co-pay program.”  This program pays a share of the cost for home care and adult day care for low-income persons whose incomes are too high to meet Medicaid eligibility.

          Rhode Island also falls short in providing subsidies to caregivers of frail low income elderly to keep them out of costly nursing homes, says Maigret, noting that the program’s funding was cut by 50 percent in 2008, creating waiting lists which have occurred over the years, It’s “short sided” to not allocate adequate resources to this program. The average annual cost of $ 1,200 per family for the caregiver subsidy program can keep a person from going on Medicaid, at far greater expense to Rhode Island taxpayers, she says.

          This AARP report must not sit on a dusty shelf.  It gives an early warning to Congress and to local lawmakers.  As Americans [and Rhode Islanders} live longer and have fewer children, fewer family members will be available for caregiving duties. Researchers say that the ratio of potential family caregivers to the growing number of older people has already begun a steep decline. In 2010, there were 7.2 potential family caregivers for every person age 80 and older. By 2030, that ratio will fall sharply to 4 to 1, and is projected to drop further to 3 to 1 in 2050.

With less caregivers in the trenches providing unpaid care to keep their loved one at home, the state will have to step in to provide these programs and services – for a huge price tag to taxpayers.  State lawmakers must not be penny wise and pound foolish when it comes to caregiver programs.  Funding should not be slashed in future budgets, rather increases might just make political sense especially to tax payers.

Herb Weiss, LRI ’12 is a Pawtucket writer covering aging, health care and medical issues.  He can be reached at hweissri@aol.com.

Report: Caregivers Face Demanding Personal and Professional Challenges

Published in Pawtucket Times, October 3, 2014

Providing care to cognitively and complex chronically impaired family members can be hazardous to the health and mental wellbeing of caregivers, says a jointly issued report by the United Hospital Fund and AARP Public Policy Institute. The researchers found that the demanding personal and professional challenges lead to high levels of self-reported challenges.

According to Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions, a publication in the “Insight on the Issues” released on Aug. 19, a majority of respondents (61 percent) reported constant stress from having their feeling stress “sometimes to always,” between their caregiving responsibilities and trying to meet other work or family obligations.

Adding to the challenge, people with cognitive and behavioral conditions (collectively termed in the 13 page report “challenging behaviors”) were generally sicker than other people requiring caregiving. These persons needing care often had chronic physical health diagnoses—including cardiac disease, stroke/hypertension, musculoskeletal problems (such as arthritis or osteoporosis), and diabetes—at higher rates than those without cognitive and behavioral conditions. Further illustrating the complexity, family caregivers of people with challenging behaviors often met with resistance from the person they were trying to help. Caregivers noted that “more cooperation from their family member” would make one key medical/nursing task—managing medications—easier.

The new findings are drawn from additional analysis of data based on a December 2011 national survey of 1,677 family caregivers, 22 percent of whom were caring for someone with one or more challenging behaviors. Earlier findings were published in the groundbreaking Public Policy Institute/United Hospital Fund report Home Alone: Family Caregivers Providing Complex Chronic Care and in earlier publications in the “Insight on the Issues” series, including Employed Family Caregivers Providing Complex Chronic Care and Family Caregivers Providing Complex Chronic Care to Their Spouses.

The report concludes, “All caregivers need training and support; caregivers who are responsible for people with challenging behaviors are among those most in need of assistance.”

Focused caregiver assessments were one of six recommendations outlined in the report. The others were better integration of behavioral and physical health programs, efforts to set up respite and adult day care programs for family caregivers, training of family caregivers to better understand and respond to challenging behaviors, better training of health care providers to work more effectively with family caregivers, and revisions to most support and training materials for family caregivers to reflect care management of the whole person, rather than just the specific condition.

“Caregiving is rarely uncomplicated, “said AARP State Director Kathleen Connell. “Add these issues and the stress on the caregiver grows and can feel unceasing. We need to be mindful of the circumstances caregivers face. In the larger scheme, this points to the need a strong strategy that provides support to all caregivers.”

Susan Reinhard, AARP’s Senior Vice President for Public Policy, adds: “Take a hard look at this profile of today’s overstretched and overstressed caregiver for someone with cognitive or behavioral issues,”. “This is the face of caregiving’s future unless we improve long-term services and support for family caregivers,” she said, pointing to the expected surge in the incidence of Alzheimer’s disease and the projected drop by more than half in the ratio of potential caregivers to those likely to need care.

“Caring for a family member is hard enough when the family member is on the same page,” said co-author Carol Levine, Director of the Families and Health Care Project for United Hospital Fund. “But when that family member has a cognitive impairment, like Alzheimer’s, or a behavioral issue, such as depression—things that can interfere with daily life as well as decision-making—the burden on the caregiver is multiplied. And currently, our health care system often doesn’t provide the kind of support that can make a difference.”

Gearing Up

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient. As indicated by the recently released AARP/United Hospital Fund report, many of these caregivers will doubly challenged by taking care of a loved one with chronic diseases who also have chronic and behavioral issues.

As reported in a previous commentary, both federal and state officials are gearing up to battle the nation’s impending Alzheimer’s epidemic.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

Amazingly with the November election looming, candidates for Lt. Governor may be discussing a multitude of issues, but not the Ocean State’s impending Alzheimer’s epidemic and its impact on caregivers. Nor are the candidates talking about how they would continue the work of Lt. Governor Elizabeth Roberts in implementing the Long-Term Care Coordinating Council’s efforts to fully implement the State’s Alzheimer’s plan.

With the Lt. Governor being given the responsibility of overseeing the work of the Long-term Care Coordinating Council, maybe aging policy issues like the state’s impending Alzheimer’s disease epidemic and its impact on state resources and caregivers should be thoroughly debated. It’s a no brainer.

Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions was produced with support from the John A. Hartford Foundation. The report is available at https://www.uhfnyc.org/publications/881005.

To review the Rhode Island’s Alzheimer’s plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

Herb Weiss, LRI’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.

Rhode Island Families Can Benefit from Expanding State’s TDI Program

Published in Pawtucket Times, May 17, 2013

In the 2012 legislative session, it was very easy for Pawtucket Rep. Elaine A. Coderre to say yes to Sen. Rhoda E. Perry, when the Providence lawmaker came looking for a House sponsor of S 2734. Perry’s legislative proposal would amend the State’s existing Temporary Disability Insurance (TDI) program to include coverage for caregivers who care for loved ones during a health care emergency or to take time off to bond with a child.

Years before, unexpectedly being pushed into the role of caregiver would bring Coderre to become the primary sponsor of H 7862, the companion bill to S 2734. To the disappointment of the Pawtucket lawmaker and her Senate colleague, their legislative proposal would be held for further study, effectively killing it.
Understanding a Caregivers Needs

In 1997, taking care of her dying mother became time-consuming for Coderre, a part-time lawmaker who served full-time as Executive Director of the Emergency Shelter of Pawtucket. Before the onset of the terminal illness, Coderre’s 78-year-old mother had lived independently on the second floor of her daughter’s three floor tenement.

With her elderly mother quickly losing her ability to live independently, being diagnosed with fourth stage Alzheimer’s disease and fourth stage colon cancer, the fifty-year old Coderre instantly became a very stressed caregiver

For over ten months, Coderre skillfully juggled the responsibilities of working two very challenging jobs, meeting family demands, and becoming the primary caregiver to her frail mother. To provide care seven days a week, 24 hours a day, Coderre would rely on her husband, three adult children, sister and her husband, to assist.

“It was a scheduling nightmare, remembered Coderre, referring to the complexity of making sure each family member was inked in the schedule and were notified when to report for duty. “We were committed to making my mother, in her final days, feel safe, secure and to have a quality of life,” she said, noting that her family did work well together, making the care giving schedule work

Looking back, Coderre considers herself extremely fortunate because she had her immediate family and was able to hire a homemaker, to provide more of the physical care, from 9:00 a.m. to 4:00 p.m.
Supporting Temporary Caregiver Insurance

But, Coderre realized from this experience and calls from constituents that not everyone has a large network of family and friends, or adequate finances to take care of a very sick loved one, even to know where to find caregiver support services. Becoming a care giver to a frail family member, an experience that many Rhode Islanders will face during their adult life, pushed Coderre to again become the primary sponsor of House legislation to create a Temporary Caregiver Insurance Program (TCIP), for the second time around.

During the 2013 legislative session, Coderre has joined Sen. Gayle Goldin, who represents areas in Providence’s Eastside, to reintroduce companion measures in the Rhode Island General Assembly (H 5889 and S 231) to create a TCIP. The legislative proposal, modified to address opponent concerns from the last session over the length of the benefit, would expand TDI to employees who must take time out of work to care for a family member or bond with a new child in their home.

If enacted, employees would be eligible to receive up to 8 weeks of replacement income while providing care for a seriously ill family member or new child. The law would provide employees with job security by allowing them to return to work when their caregiver responsibilities have concluded. The average weekly benefit for an employee would be $408.

Like Coderre, Goldin, a first-term Senator, had her own life experience as a caregiver. Over the years she, as a family advocate, she has also talked with many parents who told her of their own children’s health needs and financial and emotional stress it created and how important this program was for them.

“Paid family leave is a cost-effective way to give employees the time to balance family and work responsibilities without jeopardizing their economic security,” said Goldin.

In the early 2000s, Goldin’s interest in research on TCIPs was piqued when the program was implemented in California. Last year, as a member of the Providence-based Women’s Fund of Rhode Island’s Policy Institute, she brought this knowledge to the table when working with seven women to get legislation introduced on Smith Hill.

At that time, out of five state’s nationwide that had TDI, like Rhode Island, identified two (California and New Jersey) allowed the program to be used by caregivers, not just those who are suffering the illness or injury themselves.

The research findings gathered from the Women’s Fund of Rhode Island’s Policy Institute would give ammunition to Sen. Perry and Coderre to push for the TDI program expansion in 2012. When Goldin took over Perry’s Senatorial seat when the long-time Providence Senator retired, she picked up the TDI cause, bringing Coderre back to the plate this legislative session, to assist her in the House.
Advocates Rally to Support

On April 11, eleven groups, including AARP Rhode
Island, the Senior Agenda coalition, Woman’s Fund of Rhode Island, the Economic Progress Institute, Rhode Island Kids Count, and the Rhode Island SEIU State Council, came before the House Finance Committee, to push for passage of H 5889.

Dr. Marcia Conè, Ph.D., CEO, of the Woman’s Fund of Rhode Island, told lawmakers that the TCIP is just an updated extension of the current TDI program that “best addresses the new health and lifestyle changes of today’s society, giving “everyone the flexibility of needed to balance the new realities of family and work responsibilities.”

To put the brakes to a “brain drain” out of the Ocean State, due to higher salaries available in bordering states, Dr. Conè stressed that H 5889 would offer what all employees need, time off to care of family business in a crisis. “The prestige of having the most family friendly work environment in New England is a very strong incentive for families to stay in the state to make Rhode Island their home,” she told the panel.

In her testimony, Executive Director Kate Brewster, of The Economic Progress Institute, stated that the state’s Parental and Family Medical Leave Act of 1987, and the Federal Family Medical Leave Act of 1993, give employees up to 13 weeks of “unpaid leave” to care for a family member or new child. “These laws protect employees’ jobs, but not their wages,” she said, observing that low-income Rhode Islanders can not afford to take unpaid time off from work, they need their wages.

Countering Brewster’s comments, submitted testimony by R. Kelly Sheridan, representing The Greater Providence Chamber of Commerce, warned that H 5889 would expand the State’s existing TDI program to allow employees time off to care for family members, when most states do not even have a TDI system. This expansion “would make Rhode Island’s business climate an outlier compared to our neighboring states and would send the wrong message to the business community regarding improving the business climate in our state,” he said.

While Matt Weldon, Assistant Director, of the State’s Department of Labor and Training, took no position on the TCIP legislative proposal, he came to answer questions. Weldon noted that there could be a .2 increase to the rate an employee is mandated to pay into TDI. Currently, the state program takes 1.2% of the first $61,400 out of an employee’s paycheck.

Maureen Maigret, Policy Consultant for the Senior Agenda Coalition of Rhode Island, told the House panel that nobody can predict when a family crisis will come, specifically “the critical illness of a child or spouse, an older person’s fall and subsequent need for care.”

Maigret estimated, for just pennies per week paid by workers – the cost of a cup of coffee — passage of H 5889, would allow workers to take temporary leave to deal with sudden critical family needs and still have some income.

With the Rhode Island General Assembly gearing up to finish the people’s legislative business by the middle of June, We Care for Rhode Island (WCRI), a grass roots coalition consisting of 32 organizations, including small business owners, workers, policy centers and family and health care advocates, was established at the end of April, to push for the passage of a Rhode Island TCIP.

Last Saturday, visiting local retail stores on Hope Street, Steve Gerencser, of WCRI, passed out literature, calling on owners to support his group’s attempts to create a TCIP in the Ocean State. “It can be a boon for businesses,” he says, citing a 2011 research study detailed on his Legislative Fact Sheet, supporting the passage of H 5889 and S 231. Gerencser notes that the findings estimate that program would save employers $89 million a year by improving employee retention and reducing turnover costs.

Goldin agrees with WCRI’s assessment a TCIP’s benefit to businesses. Moreover, she claims that there is really no impact on the State’s budget, to start up this new program. “It’s revenue-neutral and is solely funded by the employee, business owners and taxpayers do not contribute.”

With a negligible expense to implement, with no cost to the taxpayer or even the business community, it’s penny-wise and pound foolish for state lawmakers to not create a Temporary Care Giver Insurance Program, to financially assist Rhode Island employees when they take off time to help seriously ill family members or to care for newly adopted child.

Sound public policy, like this legislative proposal, can only send a clear message across the United States, that the Ocean State is finally taking steps to become more family-friendly, a great way to competitively attract large corporations and even smaller businesses into our borders.

Herb Weiss, LRI ’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.