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.