Rhode Islanders Will Benefit for Long-Term Care Improvements

Published in Pawtucket times on April 5, 2004

An AARP membership application just arrived last week, inviting me to join the nation’s largest senior advocacy group.

AARP’s invitation to join clearly announces my major milestone in my life, when my June birthday officially pushes me into my 50s.

Celebrating my 50th birthday is no problem for me on a personal level, especially with my philosophy that, as with wine, one gets better with age.

But, as a writer on health care and aging issues, I see problems as to how I might access needed home and community-based services or nursing hoe care in my later years, especially if the state does not fix its problematic long-term care deliverly system.

The graying of Rhode Island’s population is taxing the state’s existing long-term care delivery system and will continue to do so for years to come. In response, state policymakers have taken a Band-Aid approach in trying to fix the fragmented system.

Already the Ocean State’s senior population, ages 60 and over, comprises more than 18 percent of the state’s total population. Gov. Don Carcieri and state lawmakers should be very concerned that Rhode Island’s population continues to age at the same time its long-term care delivery system needs an immediate overhaul.

Everyone knows it is extremely difficult for caregivers and seniors to negative the Ocean State’s long-term care system. Just ask any aging baby boomer (persons born between 1946 and 1964), and many will say that it is extremely difficult to find the needed programs and services to k eep mom and dad at home.

Today, many adult children who are juggling careers and raising children are also shouldering additional caregiving responsibilities to their olde parents. Even if their parents have been able to put a little money aside for their retirement, their children see their inheritance quickly being whittled down by thousands of dollars a month, all spent on costly pharmaceuticals and long-term care services.

Money can buy you anything in life, including home and community-based care and nursing home services.  Staying independent at home is still difficult for may moderate-income Ocean State seniors who cannot pay or find providers , especially with the Department of Elderly Affair’s (DEA) co-pay program not being fully-funded.

DEA’s co-pay program aids more that 1,500 frail seniors who do not qualify for the state’s Medicaid program, but who require ongoing services to remain in their homes. This funding helps pay for certified nursing assistants, who assist seniors with bathing, meals, shopping, laundry and light house keeping. DEA’s co-pay program slso provides subsidies for adult day care.

Last October, DEA’s freeze on new admissions to its co-pay program left more than 200 frail seniors on a waiting list for home and community based services.

While Gov. Carcieri recently gave an additional $ 200,000 in funding to DEA’s co-pay program in his 2005 budget, senior advocates have warned this amount is not enough. It is estimated this additional funding will serve 60 to 80 seniors out of the 200 persons currently on the waiting list.

Meanwhile, DEA has even put a freeze on new admissions to its respite program, which enables caregivers to take a break from the grueling physical and psychological demands of taking care of a frail elderly family resident.  This freeze will continue for the rest of this fiscal year, and nobody is sure how long the freeze for this initiative will last.

Hugh Hall, chair of the R.I. Health Care Association, tells All About Seniors that nursing homes will also be especially hit hard as state funding continues to diminish at the same time as  the cost of services and regulatory requirements increases.

“The state’s budget crisis is causing the governor to not meet a commitment in restructuring an antiquated Medicaid reimbursement system that pays for the care provided to 75 percent of the 10,000 frail residents in nursing homes,” said Hall.

This year, Carcieri, citing budgetary constraints, did not keep his promise to move forward with Part Two of the Medicaid reimbursement restricting, said Hall.

“This will have serious effects on the financial viability and quality of care provided in more than 70 small nursing homes throughout the state,” he said.

The huge budget deficient will continue to force Carcieri’s and state lawmakers hacking of many worthy programs and services previously funded in the state budget.  However, the state’s 2005 budget must adequately fund DEA’s co-pay and respite initiatives that keep frail seniors at home in their communities through the use of less costly home and community-based services.

The state must also keep its promise to adequately fund the state’s nursing homes for providing the needed medical care to those who are too sick to stay at home.

Hopefully, in 15 years, when I reach my next milestone – turning 65 – the state policy makers will have hammered out a much improved long-term care delivery system.

A commitment by Carcieri and state lawmakers to fix today’s fragmented long-term care delivery system will have long-range consequences, ultimately beneiting aging baby boomers, their children, and their children’s children.

Indeed, all future generations in this state will ultimately benefit from sound long-term care policy.

Fogarty, Senior Advocates to Rally for Increased Funds for State’s Co-Pay Program

Published in Pawtucket Times on March 22, 2004

Research is just beginning to show what Rhode Island aging advocates already know – that more assistance is required for helping the disabled and seniors to reside independently in their homes in the community.

According to researchers at the Disability Statistics Center at the University of California at San Francisco, about 3.3 million community-residing adults who require assistance with two or more activities of daily living (ADLs) need help from another person.

Of these, almost one million people need increased care, more than they are receiving – particularly those who live alone.

ADLs include bathing, dressing, getting into or out of bed or a chair, toileting, eating and other activities that are required to maintain their homes, such as shopping and preparing meals.

This study, published in the March issue of The Journal of Gerontology: Social Sciences, is considered to be the first to estimate the level of care required to help people.

“Individuals who need personal assistance with two or more of the five basic ADLs [mentioned above] and whose needs are unmet, have a shortfall of 16.6 hours of help per week,” said lead author Dr. Mitchell P. LaPlante.  Joining him on the project were Drs. H. Stephen Kaye, Taewoon Kang, and Charlene Harrington, in a written statement.

Among adults whose assistance needs are not fully met, people living alone fare worse than those who live with others, the researchers said. The study found those living by themselves receive only 56 percent of the help they need, while those living with family members or friends receive 80 percent of the hours of help, they need.

The research findings indicate that having unmet needs is linked with numerous adverse consequences, including discomfort, weight loss, dehydration, falls, burns and dissatisfaction with the help they do receive.  This puts these people at risk of being forced to leave their homes and move into costly nursing facilities.

Additionally, the University of California at San Francisco study also reported that unmet needs among people living alone are more an issue for the elderly, since two-thirds of those living alone and needing more help are age 65 or older.

This research study, probably the first of may to come that estimates the assistance required by the nation’s disabled and elderly, should be delivered to the doorstep of Gov. Donald Carcieri and every state lawmaker.

Even with the graying of the Ocean State’s population, the governor and the Rhode Island General Assembly are moving too slow to adequately fund less costly community-based care programs.

Carcieri has given an additional $ 200,000 in funding to the Department of Elderly Affairs (DEA) co-pay program in his recently released proposed 2005 budget.

While appreciative for this increase in funding in the showdown of the state’s huge budget deficit, senior advocates say this is not enough to keep people off the waiting list for this worthy program.

DEA’s co-pay program keeps 1,500-plus low-income frail seniors who do not qualify for the state’s Medicaid program but who require ongoing services to remain in the community in their homes by providing a little bit of funding for certified nursing assistants (for assisting with bathing, meals, shopping, laundry, and light housekeeping). And DEA’s co-pay program also provides subsidies for adult day care.

Last October, a DEA freeze on new admissions to the co-pay program left 200 frail seniors on a waiting list for home and community-based care, said senior advocates.

According to the state’s Long-Term Care coordinating Council (LTCCC), the typical person in DEA’s co-pay program is between ages 65 and 104, with the average age being 84. Most are women and more than half live alone. Without the state’s co-pay, these seniors will have to pay the entire fee for their care –    which they cannot afford – or enter a nursing home, or go without the help they need to do simple things such as bathing, shampooing and dressing.

Susan Sweet, a consumer advocate  who sits on the LTCCC, expressed concern that a DEA freeze – putting the copayment program on hold – for those on the waiting lists still exists this fiscal year.

“These people have been waiting a long time to get the home care or adult day care services that they need. I am afraid that waiting longer will result in many of them entering nursing facilities prematurely,” said Sweet.

Sweet noted Carcieri’s proposed 2005 allocates an additional $ 200,000 in funding for next year’s DEA’s co-pay program.

“It will take more funding than that to take care of the frail seniors still left on a waiting list,” Sweet charged, noting that DEA Director Adelita S. Orefice, did say another $ 250,000 would be needed in FY 2005 to meet DEA’s co-pay program demand.

Lt. Gov. Charles J. Fogarty, who is chairman of the LTCCC, will join senior advocates today at 11:00 a.m. at the Statehouse, calling for the state to reopen admission to a state-funded co-pay program that helps limited-income seniors pay for home and community-based care.

The press conference is expected to draw several family caregivers and representatives of AARP-RI, Choices Coalition, Respite Services, R.I. Adult Day Care Services Association, Alzheimer’s Association of R.I., R.I meals on Wheels, R.I Partnership for Home Care, R.I. Senior Center Directors Association, Senior Agenda Consortium and the Silver-Haired Legislature.

“Freezing the DEA co-pay program is a fiscal folly,” Fogerty said in a written statement obtained by All About Seniors that will be released at today’s rally.

“It is shortsighted from both a financial and a human perspective. It is not as if this freeze will result in overall cost savings,” said the Lt. governor.

Fogarty said this freeze was ordered to avoid having the DEA spend more than what was budgeted for the program in the current fiscal year – an amount that was less than what was spent on the program in FY 2003.

At this rally Fogarty will call for the state to provide adequate funding in the FY 2005 budget for DEA’s co-payment program to address the unmet need.

“To the contrary,” Fogarty said, “it may wind up costing taxpayers much more, because these seniors are still going to need care and they’re going to get by being forced into nursing homes where the taxpayers will pay tens of thousands more than we would have paid for the co-pay program.”

According to Fogarty, in FY 2003, the state supported 1,457 seniors in the program, spending $ 3,650,117, or $ 2,505 per senior. That’s less than 1 percent of all long-term care spending. Contrast this, he said, in is written statement, with the annual cost per nursing home resident – between $ 32,000 and $ 53,700 (this figure excludes the average 20 percent patient contribution to care and includes state and federal dollars).

Fogarty said, “It boggles the mind that in tight budget times, we would opt for the more expensive solution – especially in light of the fact that the less costly option of keeping seniors in their homes is the most humane option.”

As mentioned in a previous column, there is also a freeze and waiting list for the state’s respite program, which provides assistance to family caregivers. This freeze continues and no additional funding has been allocated for this program in Carcieri’s proposed 2005 budget.

Carcieri and state  lawmakers must not continue to put patches on the state’s old dilapidated long-term care deliver system. As I previously mentioned, now is the time to tackle the thorny issues of long-term care and its rising costs.

Rhode Island must move to create a long-term care delivery system that will adequately provide funding for keeping seniors independent in the comfort of their homes while adequately providing reimbursement to nursing facilities that take care of sicker patients.

Seniors can support Fogarty’s call for adequate state funding for DEA’s co-pay program by attending the rally scheduled today at 11:00 p.m.at the Statehouse.

Meanwhile a DEA budget hearing will be held before the House Finance Committee later in the afternoon, at 1:00 p.m. in Room 35 of the Statehouse.

Seniors can attend this hearing to give their support for increased state funding for community-based care long-term programs. Testimony taken from the public will be televised on the state’s access cable channel.

Alliance for Better Long-Term Care Celebrates 25th Anniversary

Published in Pawtucket Times on October 20, 2003

Next Friday, nursing home advocates, state officials, residents and their families and friends along with long-term care providers are invited to North Kingston to celebrate the 25th anniversary of the Alliance for Better Long-Term Care.

With its emergence on the advocacy scene in 1988, the Alliance for Better Home Care (later renamed the Alliance for Better Long-Term Care) has effectively defended the rights o those who can no longer speak for themselves – the elderly who receive care in the state’s nursing homes. Later in the late 1990s, the nonprofit group expanded its advocacy role into the assisted living, home care and hospice sectors. (This would result in the above-mentioned organizational name change).

Back in 1986, a thirty-something Roberta Hawkins had just raised her two daughters, Robin and Cindy. The former facility worker with 15 years’ experience under the belt working at Warwick-based Levitons Manufacturing Co., sought out a new career in human services.  Hawkins enrolled at Rhode Island College to become a  social worker.

At this time, she joined the federally funded program, Volunteers in Service to America (VISTA) “to make a difference.”

Hawkins would later be assigned to assist low-income Rhode Islanders in applying for eligible federal and state benefits. However, poor nursing home care provided at the Rhode Island Nursing Home in Providence would later lead to refocusing of the nonprofit group’s mission, one that would aim to protect the health and dignity of the Ocean State’s growing nursing home resident population.

With VISTA funds and small grants drying up at the beginning of the Reagan years, around 1888, Hawkins’ nonprofit group received funding from the Department of Elderly Affairs to refocus her group’s new advocacy role in the state. The Alliance for Better Nursing Home Care was born.

Hawkins, along with six fellow VISTA volunteers, would later form the staff of the newly created statewide, advocacy group.  Three years later, Hawkins would take over the helm of the group.  Three years later, Hawkins would take over the helm of the group. Ultimately, she would become the sole staffer, with an organizational budget of $ 8,000.  Volunteer staff, consisting mostly of family members of nursing home residents, would help Hawkins formulate advocacy strategy, recruit new members, write and disseminate a newsletter and organize fundraisers.

Twenty-five years later, Hawkins Alliance for Long-Term Care has an operating budget of $ 770,000 with a staff of 14 people and a core group of 40 volunteers.  Several years ago, the Department of Elderly Affairs (DEA) out-sourced ombudsman duties to this non-profit group.

Since its inception, the Alliance for Better Long-Term Care has assisted families in both understanding and choosing the most appropriate care setting to place their loved ones, said Hawkins, in a multiple of care settings – from assisted-living nursing homes or to their own homes, through the provision of home care services.

As the state’s official ombudsman agency, Hawkins and her staff work to educate family members and residents of their state and federal rights.  Care complaints are investigated a resolution mediated between residents and the long-term care providers.

As an advocate, Hawkins testifies on behalf of nursing home residents at legislative and regulatory hearings.

Where does Hawkins go from here?

Hawkins said she looks forward to making  bigger changes in the Ocean State’s long-term care delivery system.

“When delivering services, state agencies sometimes cut people off from the services when they reach a certain age,” like rehabilitation and mental health services, she said.  “That’s totally inappropriate,” she adds.

Hawkins also told All About Seniors she will continue to work toward “putting the home back into nursing homes.” The facility must truly become are a resident’s home, she urged.

Rhode Island’s most visible nursing home advocate also wants to see facility staff adequately paid for the valuable work they perform.

“We must get rid of the staff that do not care about providing good care to the elderly and keep those who really do, by paying them livable wages and providing a good working atmosphere,” she said.

Hawkins has gained the respect of a wide variety of state officials, aging advocates and providers in her 25 years of advocacy.

Lt. Gov. Charles Fogarty, who worked with Hawkins when he was a state senator and as chair of the state’s Long Term Care Coordinating Council (LTCCC), said Rhode Island is fortunate to have such a dedicated and committed advocate.

“We all sleep better at night knowing that she is there for us to advocate on behalf of the thousands of frail and vulnerable elderly in long-term care settings,” he said.

Lucille Massemino, administrator of Charlesgate Nursing Center, a Providence-based 160-bed skilled nursing facility and a former m ember of its board of directors, said she sees Hawkins as a passionate advocate pushing for the quality of life of nursing home residents.

“She is very assertive with administrators, knowing the needs of residents and prodding facilities towards fulfilling those needs,” she said.

Meanwhile, Hugh Hall, president of the Rhode Island Health Care Association has seen Hawkins in action over the past 18 years, working tirelessly for the improvement of Rhode Island’s long-term care services.

“She has lobbied the state legislature for better care in nursing homes [urging lawmakers to pay facilities an adequate reimbursement rate and calling for the state to address a nurse staffing shortage],” he said.

Hawkins said she plans to stay around as long as she is effective and as long as her passion to fight for nursing home residents remains. For the sake of the tens of thousands of Ocean State seniors and young disabled people who need long-term care services, hopefully we’ll see her around advocating on their behalf for a long time to come.