Funding for Seniors in Raimondo’s FY 2020 Budget Blueprint

Published in the Woonsocket Call on January 27, 2019

By Herb Weiss

Almost two weeks ago, Democratic Governor Gina Raimondo formerly unveiled her $9.9 billion budget proposal to the Rhode Island General Assembly. The House and Senate Finance Committees then begin the task of holding hearings on budget plan, getting feedback from the administration and the public. Once the revised estimates of tax revenue and social-services spending is available in May, negotiations seriously begin between Raimondo, the House Speaker and Senate President to craft the House’s budget proposal. Lawmakers will hammer out and pass a final state budget for the fiscal year that begins July 1.

Local media coverage of Raimondo’s ambitious spending initiatives zeroed in on her call for expanding free tuition to Rhode Island College and adding some public pre-kindergarten, increasing minimum wage from $ 10.50 to $ 11.10 per hour, allowing mobile sports betting and legalizing recreational marijuana.

But, Raimondo’s budget proposal gives state lawmakers a road map for what programs and services are needed for a state with a graying population.

According to Meghan Connelly, DEA’s Spokesperson, a nearly 60 percent increase in the State’s population of residents aged 65 and older from the years 2016 to 2040 highlights the need for continued investments in programs servicing Rhode Island’s older adults and their family caregivers.

Connelly says Raimondo’s budget proposal, released on January 17, elevates Elderly Affairs from a division under the Department of Human Services to an Office within the Executive Office of Health and Human Services. The governor shifts financing for the office and 31.0 FTE positions to EOHHS to accomplish this recommended action.

“The projected increase in the state’s senior population – from 174,000 in 2016 to 265,000 by 2040 – coupled with the proven impact of community-based supports and services, highlights the need for continuing to invest in helping our seniors remain home, connected to their families and networks. Support of aging-related health-promotion initiatives are essential to maintain a high quality of life for Rhode Island seniors while minimizing aging-related healthcare costs,” says Connelly

“We are focused on making it easier for older adults to live independent, fulfilling lives for as long as possible,” said Michelle Szylin, Acting Director of the Division of Elderly Affairs. “The Co-Pay expansion [in the governor’s proposed budget] enables additional older adults to age-in-place, remaining safely in their homes and engaging in their communities.”

The Co-Pay expansion enables additional older adults to age-in-place, remaining safely in their homes and engaging in their communities. The governor’s proposal to expand the state’s Co-Pay program [by $ 550,000] will allow more seniors to reside in their communities, staying connected to their family and network of friends and neighbors.

Providing access to the Co-Pay program to individuals earning up to 250% of the Federal Poverty Level will allow more seniors to age-in-place with a better quality of life and delay nursing home admission. The DEA Co-Pay program was established in 1986 as an option for elders who would otherwise be ineligible for subsidized home and community care assistance because they did not qualify for the Rhode Island Medical Assistance program.

Recognizing the importance of the state’s Elderly Transportation Program to keep older Rhode Islander’s independent, Raimondo’s budget proposal calls for additional funding of $1.8 million from general funds to support the State’s elderly transportation program. This program provides non-emergency transportation benefits to Rhode Islanders age 60 and over who do not have access to any means of transportation. The program provides transportation to and from medical appointments, adult day care, meal sites, dialysis/cancer treatment and the Insight Program.

Raimondo’s proposed budget also increases Health Facilities regulation staffing to increase the number of inspections to state-licensed health care facilities. The governor recommends a $327,383 increase in restricted receipt funds for 3.0 FTE positions. These positions will bolster existing staffing to increase the number of inspections to state-licensed healthcare facilities.

The Governor’s proposed FY 2020 budget also through the Rhode Island Public Transit Authority continues to subsidize the transit of elderly and disabled Rhode Islanders through the Rhode Island Public Transit Authority.

Raimondo’s proposed budget also continues the support for the Independent Provider model P model with almost $200,000 in general revenue funds budgeted (about $770,000 all funds) to cover implementation costs. The goal of this model is to increase workforce capacity and create a new option for delivery of direct support services for both seniors and people with developmental disabilities.

Finally, the governor’s FY 2020 budget also allocates funding to an array of programs and services for seniors. Here’s a sampling: $800,000 to support the state’s senior centers through a grant process (the amount was doubled last year); $ 530,000 to support Meals on Wheels; $ 85,000 to implement security measures in elderly housing complexes; $ 169,000 for the long-term care ombudsman through the Alliance for Better Long Term Care, which advocates on behalf of residents of nursing homes, assisted living residences and certain other facilities, as well as recipients of home care services; and $ 500,000 funds the state’s Home Modifications program at Governor’s Commission on Disabilities.

Nursing Facility Provides Take a Hit

Raimondo’s proposed budget plan seeks to freeze the state’s Medicaid payment rates to hospitals, slashing funding by an estimated $15 million overall for the year, and to limit the rate increase for nursing homes to 1%, costing them nursing home providers about $4 million.
“We are beginning the budget process with a 1 percent increase in the COLA (Cost of Living Adjustment), says Scott Fraser, President and CEO of Rhode Island Health Care Association (RIHCA), warning that “this is not enough.”

“Since 2012, nursing facility costs have risen 21.6 percent while Medicaid payment rates have only gone up by 9.6 percent, adds Fraser, noting that by statute, rates are supposed to be adjusted annually for inflation. “We will be advocating for additional funding for nursing facilities throughout the remainder of the budget process,” he warns.

Jim Nyberg, Director LeadingAge RI, an organization representing not-for-profit providers of aging services, joins with RIHCA in calling on Rhode Island lawmakers to restore the full inflation adjustment. “Ongoing increases in minimum wage (up 42 percent since 2012) make it harder for publicly funded providers to compete for skilled workers,” says Nyberg, noting that most of his nonprofit nursing homes have 60 percent to 70 percent of their residents on Medicaid. “A rate increase is needed help nursing homes recruit and retain the direct care workers that are so critical to providing quality care,” he says.

“Since 2016, our nursing homes and consumers have been severely disrupted by UHIP, financially and operationally. The ongoing problems with Medicaid application approvals and payments has resulted in significant increases in staff workload just to maintain operations, let alone the impact on cash flow and financial stability, adds Nybrg.

Nyberg’s group is also advocating to expand the CoPay program for individuals under the age of 65 with dementia. “This has been proposed in the past but not included in this budget. We think that such an expansion will help this at-risk population for whom no publicly-funded programs and services currently exist,” he says.

Lawmakers, AARP Rhode Island Gives Comments

AARP Rhode Island is encouraged to see that the Governor placed an increase in the State Budget for the Department of Elderly Affairs home healthcare Co-Pay program,” said AARP Rhode Island Advocacy Director John DiTomasso. “By increasing the income eligibility from 200% of the poverty level to 250%, more older Rhode Islanders will be able to obtain home care services at reduced hourly rates,” he added. “This will help large numbers of people to extend the time they can age in place in their home and in their community rather than in more costly state-paid long-term care facilities,” says DiTomasso.

Senate President Dominick J. Ruggerio says, “Upon a first look at the budget, I am very pleased that some of the Senate’s top priorities are incorporated. The Governor had to close a significant deficit, and difficult choices had to be made. However, the budget is a statement of priorities, and initiatives like the no-fare bus pass program for low-income seniors and disabled Rhode Islanders are a priority for us in the Senate. I am very pleased to see this program funded in the budget, along with many other services for seniors, and I look forward to deeper analysis of all aspects of the budget in the months ahead.”

AddsD House Speaker Nicholas Mattiello, “The House Finance Committee will soon begin holding public hearings and reviewing every aspect of the Governor’s budget proposal. We will make certain that the level of care and services to older adults will be maintained and hopefully enhanced. We are facing significant budget challenges this year, but we will always keep the needs of our seniors at the forefront of the discussions.”

Older Rhode Islanders and aging groups must continue to push the House to at a minimal maintain the governor’s senior agenda. Hopefully, as Mattiello said, senior programs and services can be enhanced.

For a Senate Fiscal Analysis of Raimondo’s FY 2020 budget, go to http://www.rilegislature.gov/sfiscal/Budget%20Analyses/FY2020%20SFO%20Governor’s%20Budget%20-%20First%20Look.pdf.

Financial Exploitation of Elderly Must Be Addressed

Published in Pawtucket Times, February 7, 2015

 Professor Philip Marshall, Coordinator of the Historic Preservation Program at Roger Williams University in Bristol, entered Room 562 in the Dirkson Senate Building not to testify on historic preservation policy, as he often did, but to share a family tragedy.  Marshall’s testimony detailed how his grandmother, New York philanthropist Brooke Astor, was financially exploited in her later years by his father.

Brooke Astor, a philanthropist, socialite and writer, was presented the Presidential Medal of Freedom by President Bill Clinton in 1998, for her generous giving of millions of dollars to social and cultural cause.  Marshall, one of four witnesses who came before the U.S. Senate Special Committee on Aging this past Wednesday, would say, that his 105 year old grandmother, who died on August 13, 2007, was considered to be “New York’s First Lady,” and a “humanist aristocrat with a generous heart.”

Marshall, a resident of South Dartmouth, Massachusetts, told the panel his mother would never have wanted to be known as “one of America’s most famous cases of elder abuse.”

“Nor did she, while in the throes of dementia, choose to be victimized to be deprived, manipulated and robbed – all as a calculated ‘scheme to defraud,’ as later characterized by the Manhattan District Attorney,” said Dr. Marshall.

Astor’s financial exploitation “may be her greatest, most lasting legacy,” says  Marshall.

In his testimony, Marshall told the attending Senators that after a three-month battle for guardianship to protect his grandmother’s assets, a settlement was reached five days before the court date.  A criminal investigation launched by the Manhattan District Attorney after a potential forgery was referred to his Elder Abuse Unit, would later lead to the indictment in 2007 of his father and a lawyer, says Marshall.

Two years later, after a six-month criminal trial the jury would find Marshall’s father guilty on 13 of 14 counts against him.  All, but one, were held up on appeal.

“While my grandmother’s stolen assets were reclaimed, many elders never reclaim their money – or their lives,” observes Marshall.  “Here, for financial transactions, enhanced detection, mandatory reporting, and greater reporting of suspicious activity will help,” he says.

A Growing Epidemic

 In her opening statement, Senator Susan M. Collins, (R-Maine) who chaired, the Senate Aging Panel’s hearing, “Broken Trust: Combating Financial Exploitation Targeting Vulnerable Seniors,” warns that a growing epidemic of financial exploitation is happening – one that she estimates to cost seniors an estimated $2.9 billion in 2010, according to the Government Accounting Office.

Financial exploitation is a growing problem in Rhode Island, too, notes Senator Sheldon Whitehouse (D-RI), a member of the Senate Aging Panel. “Sadly, this number likely underestimates the cost to victims because older adults often do not report abuse, particularly when it involves a family member.”

Senator Whitehouse noted that this week’s Special Committee on Aging hearing examined the challenges to identifying and prosecuting fraud schemes and highlighted strategies to prevent the financial exploitation of seniors. “There are steps we can take to address this problem, and I strongly support the Older Americans Act, which recently advanced out of the HELP Committee and addresses financial exploitation and other forms of elder abuse,” he added.

“Over the past several years the Rhode Island State Police has experienced a steady increase in the number of complaints of elderly exploitation and larceny from individuals over sixty-five-years, says Colonel Steven O’Donnell, who oversees the Rhode Island State Police.  During the past six years his Agency has investigated 40 complaints amounting to a total loss to victims of over $1,000,000.00.

According to O’Donnell, in 2010, State Police investigated four complaints related to elderly exploitation and/or larceny.  Four years later, 14 complaints were investigated. “These increases may be attributed to the increased computer literacy of willing perpetrators and the increased accessibility to bank accounts online, which provides perpetrators the opportunity to conduct their criminal activity behind closed doors,” he says.

Combating Financial Exploitation

To ratchet up the protection of older Rhode Islanders against financial exploitation, Rhode Island Attorney General Peter Kilmartin and the Rhode Island General Assembly passed a bill last year that extends the statute of limitations for elder exploitation from three years to ten years. Kilmartin says the new law, sponsored by retired Representative Elaine A. Coderre (D-District 60, Pawtucket) and Senator Paul V. Jabour (D- District 5, Providence), gives law enforcement officials the necessary time to build a proper case for charging and subsequent prosecution, bringing it in line with other financial crimes.

“The law about financial exploitation is on the books—let’s enforce it,” says, Kathleen Heren, State Long Term Care Ombudsman, at the Warwick-based Alliance for Better Long Term Care. “What a sad world we are in where a senior or a disabled person loses everything they have scrimped and saved for to a greedy individual who, in the majority of cases, is a family member,” she adds.  Over the years she has also seen financial exploitation involving clergy, lawyers, bank tellers, brokers, and “people who you would never suspect would steal from a frail elder.”

“Many people who hear “elder abuse and neglect” [or financial exploitation] think about older people living in nursing homes or about elderly relatives who live all alone and never have visitors. But elder abuse and financial exploitation are not just problems of older people we never see. It is right in our midst, and as Attorney General, I am committed to doing all I can to protect all of the citizens of our state,” says Kilmartin.

“Many elders rely on others for assistance, but oftentimes think they can easily trust these helpers to handle their financial affairs, only to be robbed of their hard earned money,” says Kilmartin, noting that in some cases the perpetrator leaves the victim penniless.

Kilmartin notes that financial exploitation of elders is one of the most challenging crimes to investigate, charge and prosecute.  By the time law enforcement becomes aware of the abuse and investigates the matter, the statute of limitations has often expired.  “The statute of limitations needs to be more reasonable so these complicated cases can be prosecuted appropriately,” states Rhode Island’s Attorney General. “Seniors, especially those who must rely on others for care, were unnecessarily made more vulnerable by the previous short statute of limitations,” he says.

According to Kilmartin, The Office of Attorney General has a specialized unit of prosecutors and investigators that handle elder abuse cases.  Several years ago, the Elder Abuse Unit was created because of the large percentage of Rhode Islanders who were age 60 and over. The special needs of the older victims and the fact that elder abuse, neglect and exploitation crosses all racial, socio-economic, gender and geographic lines made the need for a special unit apparent.  Coupled with this fact that this age group is the State’s fastest growing demographic, crimes against older persons often times go unreported, presenting high temptation and low risk for prosecution.

In Rhode Island, there is a mandatory duty of all citizens to report a suspicion of elder abuse and/or elder financial exploitation. To report elder physical abuse and/or elder financial abuse, contact your local police, Rhode Island State Police or the Rhode Island Division of Elderly Affairs at (401) 462-3000 or dea.ri.gov.

Herb Weiss, LRI ’12 is a Pawtucket writer covering aging, health care and medical issues.  He can be reached at hweissri@aol.com or at 401 742-4372.

 

Susan Sweet Takes the Reins of AARP’s Community Educational Initiative

Published in Pawtucket Times, July 11, 2013 

            Accepting the challenge offered by organizers of Rhode Island AARP’s “You’ve Earned a Say”, veteran advocate and organizer, Susan L. Sweet, has come out of semi-retirement, stepping to the plate to coordinate a series of “community conversations”  to continue efforts of promoting dialogue throughout the OceanState on the future of Social Security and Medicare.

             After years of paying into Medicare and Social Security, AARP, a Washington, D.C.-based group representing 40 million Americans, believes that age 50 plus aging baby boomers and older persons deserve a voice in the Inside the Beltway debates that impacts their future retirement years.  “You’ve Earned a Say” is a AARP-led national conversation committed to providing people with critical information about the domestic policy proposals being debated in Congress — simply put without the political jargon and spin.

             Regional events to be held in Warwick, Pawtucket and elsewhere – free and open to all — will be scheduled throughout the summer into the fall as Congress and  President Barack Obama begin to weigh in on policy changes for these critical domestic programs.

             “Susan has a remarkable knack for encouraging people to become actively engaged in matters that deserve public attention and involvement,” said AARP State Director Kathleen Connell. “We are fortunate that she has agreed to take this on. She will bring great energy to AARP’s ‘You’ve Earned a Say’ outreach and engagement efforts. The fate of Social Security and Medicare is important to all Rhode Islanders and we hope many will take part in our forums. Working with our staff and other AARP volunteers, Susan will be a tremendous asset. She is a force of nature.”   After seeing her in action for over 18 years this columnist agrees.

             A veteran of the 1960s civil rights movement and the War on Poverty, Sweet joined the state Department of Community Affairs (DCA) in 1972, where she founded and led numerous Rhode Island Division of Women’s programs.  She worked with the General Assembly to secure the first state funding for Domestic Violence Shelters.  While at the DCA, she also wrote a grant, funded by federal dollars, to establish community health centers throughout the state.

             In the late ‘80s and ‘90s, Sweet was Associate Director of the R. I. Department of Elderly Affairs (DEA), creating and developing a number of award winning programs, including the RI Pharmaceutical Assistance to the Elderly Program, popularly known as RIPAE.  She initiated a first in the nation statewide Elder Housing Security program and various legislative and programmatic initiatives to assist elders in the state.

             Sweet, a Rumford resident, earned the monikor as the mother of RIPAE by initiating, planning, organizing, managing and finally directing the state program that would ultimately assist 32,000 Rhode Island  limited income seniors with state co-payment assistance for prescription drugs. After leaving the DEA, three attempts were made by sitting governors (both Independent and Republican) to eliminate the program and the advocate led all three successful efforts to restore RIPAE funding in the state budget.

             After retiring as DEA’s Associate Director in 2000, Sweet has been a consultant and lobbyist on Smith Hill for nonprofit agencies and an advocate for vulnerable populations and issues such as immigrants, domestic violence, homeless and seniors. Her clients have included the Senior Centers Directors Association, the Alliance for Better Long Term Care, International Institute, the Coalition Against Domestic Violence and others.

             On a personal note, Sweet, 72, cares for five adopted cats, all abandoned or abused, putters in her large backyard garden, spends time with two children and two grandchildren.  Being an expert on Roman history she reads many tomes on that era, and on world archeology and history.

Social Security on the Chopping Block

               Democratic President Obama and a Democrat-controlled Senate and a GOP House of Representatives are trying to reach a budget deal in the coming months. President Obama has proposed a change that would slash $127 billion from Social Security benefits over the next ten years, hurting many older beneficiaries who are already living on very tight budgets stretched far to thin by costly prescriptions, rising utilities, and increased health care costs. AARP and other aging groups are pushing hard against these cuts, mobilizing their troops to oppose. 

             Social Security is a self-financed program, not a piggy bank for deficit reduction, noting that aging baby boomers and seniors have paid into this pension program their entire working lives.  According to AARP polls, older Americans expect their elected representatives in Washington to fiscally secure Social Security for future generations and keep the promise Congress made 78 years ago: that this retirement program would provide a financial safety network in their later years.

             According to Sweet, the proposed chained CPI is a flawed policy that will hit Social Security beneficiaries in their pocketbook. Each year the Social Security Administration (SSA) makes the determination, based on market prices, whether to adjust the Social Security payment to beneficiaries and, if so, by how much.  The chained CPI is a formula that assumes that people will simply buy cheaper products.  “But that is not the case for seniors, whose greatest expenses are health care, utilities and other costs that can’t often be replaced,” So, the chained CPI is just a term that means that the average senior will lose more than $2,000 in the next 10 years and even more after that.  It also means that people reaching retirement age and/or planning for retirement will have even more of a reduction.

             Furthermore, Sweet finds it extremely disappointing that a Democrat President would offer, as an opening gambit in the budget process, a reduction in Social Security benefits by using a new and inappropriate method for computing Cost Of Living Adjustments (COLAs).  In fact, Social Security, a program that pays for itself and has never run a deficit, should not be used to offset deficits in other programs. We should be talking about how to strengthen the program, not reducing it, she states.

 State Pension Changes Hits Retirees, Too

             But, with Social Security COLA cuts looming if Congress takes legislative action to endorse chained CPIs, aging baby boomers in the OceanState who will shortly retire or those already receiving their municipal or state pension checks will see less retirement income because of actions of the Rhode Island General Assembly.

                 “Any additional loss of retirement income is certainly a concern for public employees who, as a result of the 2011 slashes in their promised retirement income,” said AARP’s Connell. “Lawmakers need to understand that there are earned benefits. People plan their retirement based on what they are told they can count on – whether it is a public or private pension, or Social Security. As we have said for the past two years, Congress and the President should not address the deficit by pursuing harmful cuts to Social Security and Medicare.” 

             Sweet agrees stating that “Rhode Island was at the very front of the attack on older folks with an extraordinary coup which stripped public service retirees and workers of hard earned compensation for their work. They called it “pension reform”, but that is not what it was.  Everyone knows that it is not fair to change the rules in the middle of the game and certainly not after the game is over.  But that is what is happening around the country, in private and public employment.”

             Social Security and other pensions are not “entitlement programs” but more like insurance programs that you pay into with the promise and expectation of a certain coverage, notes Sweet. The aging advocate asks: “Should the insurance company be allowed to change the benefits upon payout? Should government (state or federal) cut benefits to retirees absent the most pressing of circumstances?”

             But, certainly in the case of Social Security, there is no emergency, but rather a timely need to insure that the program can continue to fulfill its mission, she says.

             Robert A. Walsh, Jr., Executive Director of NEA, National Education Association Rhode Island, representing 12,000 members in education and in city and state government, refers to the recalculation of COLAs by using chained CPIs as “voodoo economics.”  While supporters of this recalculation policy note it reins in Social Security costs, they should at least be honest about the fact that it personally hits the retiree financially, right in their checks, he says.  “If you’re going to cut people’s COLAs, just be honest about it,” he says.

             Many of Walsh’s union members only receive their city or state pension as they are not eligible for Social Security benefits. People retired with certain expectations [as to what retirement income they had] and to make pension changes after they retire is patently unfair, says Walsh, noting they had no opportunity to plan for the decreased income.

             Throughout the nation there is a growing movement of aging baby boomers and seniors, fueled by AARP’s educational efforts, who tell Congress to simply  “Leave Social Security Alone”.  Strengthen it for future generations, they say.

             Sweet and millions of others tell Washington politicians that “Social Security is not a cookie jar to fund other programs.”   Sweet says you can make this known to Rhode Island’s Congressional Delegation, Senators Reed and Whitehouse, Representatives Cicciline and Langevin, by attending the upcoming “community conversations.”  Support their position opposing the change in the COLA and urge them to support Social Security by leaving it out of any budget deal, she urges. 

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

Tale of Two Caregivers

Published October 5, 2012, Pawtucket Times

           Being a caregiver to an older parent while raising children has now become the new rite of passage for aging baby boomers who, by the millions, are moving into their middle age years and beyond. Often called the sandwich generation for having care responsibilities at both ends of the age spectrum, these individuals become emotionally challenged, physically drained in their attempts to cope and juggle a multitude of tasks.

             According to National Alliance for Caregiving and AARP, more than 65 million persons, 29% of the nation’s population, provide care for a chronically ill, disabled, older family member or relative during any given year. The caregiver spends an average of 20 hours per week providing care for their loved ones.

 Taking on New Care giving Responsibilities

           Over seven years ago, Catherine Taylor, 51, the State’s Director of the Department of Elderly Affairs, and her husband, Rob, a practicing attorney, found themselves thrust into this new very demanding role with huge responsibilities. Like many others, the couple took on the demanding role of being caregivers of an elderly parent while juggling the intense domestic demands of taking care of four children, whose ages ranged from 3 years old to age 15.

           The Providence couple was now sharing the care of a very independent 83-year-old widow, who at that time resided in her home in Connecticut, one that she had designed. The older woman still continued to practice as an architect until her health began to rapidly steep decline.    

          In 1995, “We moved her back to Rhode Island six months before she died when she became too infirm to live independently in her home,” remembered Catherine.  

        Catherine wanted her mother-in-law to move in with her family, “but she was just too independent for that,” she said.  Her husband’s mother would ultimately choose to live out her final days in an apartment at a senior living facility on Providence’s Eastside, near the Taylor’s home. 

         As is the case with many caregivers who relocated their loved ones to live close by, packing, scheduling the move, and getting the Connecticut house ready for sale became the first chore of being a caregiver, notes Catherine.   

         According to Catherine, becoming a caregiver while working and raising a large family was incredibly hectic. “Many times we had to be in two or three places at one time,” each day.  Catherine adjusted her work schedule to help her mother-in-law with activities of daily living such as dressing, assisting in going to the bathroom, and feeding, take her to the emergency room or stay with her in the hospital, while wanting to be at home cooking her family dinner, and helping her children do their homework.

 Tips on Coping for Caregivers

            The couple juggled their roles as parents, caregivers and employees as best they could.  For instance, “our oldest child would be charged with watching his younger siblings”, Catherine says.  When visiting her mother-in-law to cook and assist her with eating, Catherine brought the youngest along to the senior living facility, and placed him in a portable playpen next to the kitchen table. Catherine, her husband and his sister, would divvy up cooking chores, each one take responsibility for making either breakfast, lunch or dinner.

           Supplemental care, provided by a home health aide, was especially needed when the aging baby boomer couple had to be at work.   

          While taxing for the entire family, care giving did have a positive impact on Catherine’s children.  “It really impressed on them how our family pulled together,” she said, noting “that it made them feel useful because they had specific jobs to perform to keep the family running.”    

           When asked if she got enough respite care for herself, Catherine quipped, “I never get enough!”  She added, “For us being part of a large nuclear family, also having a large extended family, we were able to trade off with each other.  But a lot of people don’t have that option,” she notes.  One of the hardest things about being a primary caregiver is how alone you can feel, Catherine said. “You’re living a different life from most other people.  You watch other families make snap decisions to go to the movies, and just hop in their car and go.  For you to do the same thing, the logistics tend to be like the invasion of Normandy.  You just have to go through so much organizing to have simple pleasures that other people don’t think twice about”.

          “Most family caregivers look like they are doing fine and think they are doing fine, but family, friends and neighbors, and sometimes community agencies, need to check in and give them a break so they care recharge their batteries.”

          Catherine suggests that caregivers maintain their relationships with friends and colleagues as hard as that is to do so they will look in on you, stop by for coffee, bring you dinner and help recharge you.  “This will allow you to keep doing your care giving job with love.”

 Double Duty as a Caregiver

          Sixty-four-year-old, Kathy Heren, Rhode Island’s Long-Term Care Ombudsman, a licensed practical nurse and caregiver, and her husband, John, 63, a chef, slipped into the care giving in the mid-1990s, watching out for two elder family members at the same time, a 72-year- old mother and her 78-year-old uncle.

          Both frail relatives (one had dementia and the other a heart condition) lived independently in their homes located in East Providence and on the Eastside. “Being Irish, they were both very stubborn in accepting assistance,” the aging advocate remembered. While professionally helping others cope with care giving and long-term care issues, Rhode Island’s Ombudsman had to carve out time to personally perform chores for her two frail family members. Chores included shopping, paying bills, and cleaning their houses.   Scheduling and transportation to doctor appointments and med management took additional time away from her very demanding job and family duties.

            When dealing with her Mother’s finances became just too difficult, Kathy, along with her sister, filed for guardianship.  “If you realize that there are some things you just can’t control, then seek outside services or assistance,” she recommended.  

           “Depending on personality of the person you are taking care of you may have to just step away from being a caregiver, if it impacts on your health,” she says.  “It may become the right time to turn to a nursing home or home care services, to take care of your frail family member.”

           “Make sure you turn to respite care if needed because it is always available”, Kathy suggests.  “You need to know when to seek out this assistance and go on a trip to recharge your batteries. When taking care of your loved one, do not forget your own health, family, or nutrition,” she says. .

 Seeking Respite Care Programs

             Rhode Island will receive $250,000 under the federal Lifespan Respite Care Act to support families caring for aging or disabled individuals with special needs, increasing access to short-term, or respite care. This relief offers family members temporary breaks from the daily routine and stress of providing care to loved ones with special needs.

             You can get information about respite care programs and resources available to care givers by calling by calling the Rhode Island Department of Human Services, Division of Elderly Affairs at (401) 462-3000, or you can go to www.dea.ri.gov. TTY users can call (401) 462-0740.

             The Rhode Island State Ombudsman, at the Alliance for Better Long-Term Care, monitors the quality of the Rhode Island’s nursing homes, assisted living facilities, home health agencies and hospice services, and address issues of elder abuse, guardianship, neglect and financial exploitation.  For more information, call  (401)785-3340.

             Herb Weiss is a Pawtucket-based freelance writer covering aging, health care and medical issues.

 

The Best Of…The Challenges of Caring for Your Aging Parent

           Published July 3, 2008,  All Pawtucket All The Time

          It’s not easy being a parent.  Combine this with being a primary caregiver for an aging frail relative and you work a 48 hour day.  Sixty year old Karen Sciolto, like many of her aging baby boomer peers, took on care giving responsibilities in her mid-fifties.

           Five years earlier, the Scituate resident began her experience of taking care of frail adults by working as a Certified Nursing Assistant (CNA).  “You really had to physically be able to move a person around and help to meet their emotional needs,” she stated.  She acknowledges that she was “sort of a jack-of-all-trades” and had to “know a little bit about a lot of things.”

          With her CNA job, Sciolto knew that the caregiver role and responsibilities in her family would ultimately fall upon her shoulders because her parents, even relatives were getting older.  “Very soiled long-john underwear discovered after the visit to an emergency room and a later inspection of the uncle’s house revealed “cockroaches and filth.”  He just could not take care of himself, she said.   Scattered piles of newspapers mingled with important papers and money found hidden in holes in his mattress pushed the niece in 2000 to become a caregiver for her 87-year-old uncle whose physical and mental health were deteriorating. 

         For six years, Sciolto was the solo caregiver of her uncle.  She would drop him off each day to the local senior center to give him physical, emotional and social stimulation.  The aging baby boomer would also juggle a variety of daily tasks — CNA assignments, housework, along with raising her daughter and caring for three horses.  “As a caregiver my whole life, revolved around meeting his needs,” she said. 

       Many times she was overwhelmed with the stress of providing 24 hour a day care for her frail uncle.  “You were lucky if you went to bed and could get a good nights sleep,” she added. 

A Generational Experience…

         According to Roberta Hawkins, Executive Director of the  Alliance for Better Long-Term Care, Sciolto’s care giving experiences are not unique but common to thousands of aging baby boomers in Rhode Island.  

         Rhode Island’s most visible aging advocate, who has led this nonprofit agency for over 32 years, understands care giving both on a personal and professional level.  In her sixties, Hawkins looks back at her personal experiences. In her younger days she took care of grandparents while raising her young daughter. In recent years, Hawkins would raise her grandchildren while providing care to her disable husband.

        Hawkins warns aging baby boomers “not to take on [responsibilities] that you can’t do.”  Know your abilities and also your limitations, she says.  “You really need to think clearly if you are the right person who can provide that care.”

        “Often times, adult children will feel guilty if they do not take care of their disabled parents,” observes Hawkins. “This may not be the right move due to their responsibility of raising children.  They may have limited patience to deal with the changing health care needs and personality of their older parent.”   

        If older parent and child did not get along in their earlier years, care giving just won’t work,” Hawkins says.  “There won’t be the patience or the connection needed to provide care in peace and harmony.”

 Every Day and Night

          “Care giving is a 24 hour, 7 day a week job,” Hawkins says. “Even if you bring in outside caregivers during the day you will still have to deal with nighttime and weekends,” she says.  “Nobody is happy” with household stress.  This may push the older person into withdrawing more into themselves so they become less of a burden to their adult children.   

          Sending your older parent to a senior center or day care site might not be the most appropriate strategy,” Hawkins adds.  “If the person was not a friendly or a social person, attending day care will not be a very happy experience,” she says.

         Meanwhile, Hawkins says that some problems may also surface if an adult child hires an outside caregiver to keep their aging parent at home.  “The older parent may be a mistrustful person and not want a stranger coming into their own home. This person may resent the fact that their children won’t be there for them and this can result in continuous complaints about the caregiver,” she says.

       “Before hiring an outside caregiver or becoming one yourself, always have a very frank discussion with the older person about your decision,” Hawkins recommends.  Conversations should begin before a health issue forces an adult child or spouse to make this decision without the wishes and desires of their older parent being known, she adds.

       Also, when the time comes to consider placement in an assisted living or nursing home facility, it becomes crucial for the older person to be included in the decision making process.  “Give them all the pros and cons for each and every decision,” Hawkins says.  “Match the older person to the place they are going to live in, not the other way around.”

Promises Made, Promises Broken

       Finally, caregivers must give themselves some time off to recharge their batteries.  “If there are siblings around be adamant that they help take care of their older parent, too” she tells aging baby boomers shouldering the care giving responsibilities.  “Everyone promises but they tend to be too busy with their lives to give any assistance,” she says.

       Sadly, Hawkins brings up the old saying “One mother can bring up five children but five children may not take care of the mom.”  So, true, she says, noting “I see it all the time.”

       Herb Weiss is a Pawtucket-based freelance writer covering aging, medical and health care issues.  The article was published in the July 3, 2008, All Pawtucket All The Time.  He can be reached at hweissri@aol.com.

The Best of…Little Things Count When Deciding on a Nursing Home

            Published April 23, 2001, Pawtucket Times          

           It isn’t easy operating a nursing facility these days.

           The high turn over rate of certified nursing assistants has drastically impacted the quality of care provided in facilities.  And this direct care staffing shortage is also financially hurting facilities too, reducing their financial stability, even pushing many towards bankruptcy.

          According to the Rhode Island Health Care Association, eight out of the state’s 105 nursing homes have filed for Chapter 11 Bankruptcy, two are currently in state receivership and two more were recently ordered closed by the Department of Health.

         In these difficult financial times for nursing facilities, especially with a state-wide shortage of certified nursing assistants, youmusts become a better shopper when seeking the most appropriate nursing facility to place your loved one.

       “Until there is a health crisis, families don’t often think about nursing facility care until it’s too late,” states Roberta Hawkins, executive director of the Alliance for Better Long Term Care who serves as the state’s ombudsman on the behalf of 10,000 Rhode Island nursing home residents.  “If  it’s possibly, just plan ahead,” Hawkins recommends.

      “Your state health department provides a comprehensive list of nursing homes and their survey results to help you determine if the facility is reputable,” states Hawkins.

       According to Hawkins, word of mouth or personal recommendations from family, friends, neighbors, hospital discharge planners, and her nonprofit advocacy group about a nursing home’s care are key bits of information to determine if the facility is well managed.

        “The Alliance also offers a free phone help line to assist matching the particular needs of a person with a specific facility,”  Hawkins adds.

       With more than 20 years of experience under her belt in assisting families find the right nursing facility for the loved ones, Hawkins gives simple tips on selecting a facility.

        Hawkins suggested that a need for upgraded services for residents requiring intensive medical care, special rehabilitation therapies and dietary requirements, along with religious and cultural needs should also be taken into account before selecting a facility.

       Location should not always be a deciding factor in selecting a nursing facility.  Carefully choose a facility that meets your loved ones medical, personality and social needs.

       In many cases, this critical decision is made only for convenience of family members or visitors.  If an elderly spouse can not drive, make sure that the selected facility is on a bus line.  Keeping a married couple close together is very important for their psychological well-being.

       Always have the older person in need of skilled nursing care, actively participate in choosing a facility even if they can’t physically visit the site.  Family members can also provide this person with brochures and admission materials.

      Don’t choose a facility on the basis of a beautiful physical exterior, fancy rugs, or glittering chandeliers, Hawkins says.  When visiting a nursing facility, always observe how staff members interact with residents and each other — look for laughter, a pleasant environment, and a strong activity program.

       For those frail residents who are bed bound, look for a stable nursing staff.

       Ask yourself, is the facility’s environment cheerful in appearance and clean?

        Are the bedrooms warm looking and do they reflect the residents individuality?  Or do they all look the same, like hotel rooms.

        Find out if residents are allowed to bring in personal belongings such as chairs, tables, lamps or even a television set into their rooms.

        For those persons who always loved nature and being outdoors, find out if the nursing facility has an outside area for sitting or walking.  Determine if this area is accessible to a wheelchair bound person who might want to roll outside to listen to the birds.  This simple amenity is very important.

        When touring a facility determine if a dining room is available for eating meals and space to allow residents to socialize with each other and participate in activities.

         Is there a real working activities room?  A resident who has always been involved in crafts and enjoys participating in group activities will want to select a facility with a well-run activities program.

         Also, be aware of how the nursing facility smells.  Sometimes you may smell strong odors of deodorants.  This might be covering up unpleasant odors.

        Listen for sounds of buzzers, rung by residents in need of help, and observe how quickly staff responds.

         When walking the halls, say “hello” to the staff you meet.  Do the staff pleasantly respond to you?  IF not, consider that they may not respond           well to your loved one.

         Walk in and talk with residents gathered in a community room.  In conversation, find out how long they have lived at the facility.  Ask if they like the facility and are they respected as individuals by staff.

         If you see residents in restraints lying or sleeping in a chair or wheelchair, this may be a red flag for poor care.  The facility may not have enough staff to allow the residents to lay down in bed for a nap in the afternoon.

         After you locate your facility, “put your name on the waiting list,” Hawkins recommends, even if the nursing facility admissions will occur months later.

         For those afflicted with Alzheimer’s and related dementia, it is wise for these individuals to be admitted earlier in the disease process to get them acclimated to the facility and for the staff to learn more about the resident’s habits, likes and dislikes.

        Herb Weiss is a Pawtucket-based freelance writer covering aging, health care and medical issues.  This Column appeared in the Pawtucket Times on April 23, 2001.