Tag Archives for Long Term Care Coordinating Council

RI’s State Alzheimer’s Plan Won’t Sit on Dusty Shelf

Published in Pawtucket Times on November 1, 2013

Seeing a huge rise in Alzheimer’s Disease over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

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.

Furthermore, national health care costs are spiraling out of control, says the nonprofit group’s Facts Sheet. By 2050, it’s estimated that the total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

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.

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.

In July 2013, with the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention released a 56 page report that called for public health officials to quickly act to stem the growing Alzheimer’s crisis. .

Battle Plan Against Alzheimer’s Disease

The State’s Plan to battle Alzheimer’s Disease is the culmination of a yearlong effort co-chaired by Lt. Governor Elizabeth Roberts and Division of Elderly Affairs Director Catherine Taylor, in partnership with the state chapter of the Alzheimer’s Association.

Much of the research and writing was conducted by six subgroups (Caregivers, Access, Legal, Workforce, Long-Term Care, and Care Delivery & Research) formed to identify and tackle the many challenges that Alzheimer’s disease poses to individuals, their families and to the health care delivery system. .

At their meetings, the subgroups drew upon the expertise of staff at the Geriatric Education Center at the University of Rhode Island, the Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, and the Norman Price Neurosciences Institute and the Alzheimer’s Prevention Registry

Public input was crucial in the development of the State Plan. Eight listening sessions were held across the Ocean State, two of them held with Spanish translators, at public libraries and local YMCAs, to get the opinions of those with the cognitive disorder, caregivers, and health care professionals. The probate judges association, law enforcement and other groups with unique perspectives on Alzheimer’s Disease were invited to listening sessions, too. Finally, the draft plan was made available for a ten-day public comment as part of the extensive outreach process.

The narrative in each section, nicely pulled together by Lindsay McAllister, the Lt. Governor’s Director of Health Policy, reflected many of the concerns and challenges identified by many presentations and discussions in each of the subgroup meetings over several months. The State Plan details 30 pages of recommendations outlining solutions and specific steps to be taken for preventing and caring for persons with Alzheimer’s Disease for six identified areas.

A Sampling of Recommendations

The plan encourages the development of social media networks as resources for caregivers, also calling on utilizing existing caregiver newsletters to detail more information about the Ocean State’s specific programs and services. It also calls for better training and education opportunities (for young children) to help them understand the devastating disorder and the creation of a two-week certification program, offered by local colleges and universities with input from the state’s Alzheimer’s Association.

In addition, the plan recommends the timely dissemination of research findings and best practices in nursing facilities, dementia care units, and home care to providers and families. Meanwhile, recommendations note the need to standardize dementia training and educational programs as well as the certification of facilities that offer dementia-specific care so that individuals and families impacted by Alzheimer’s Disease can rely upon high quality “dementia capable” care that they can find more easily.

The plan pushes for all Employee Assistance Programs (EAPs) to receive information about referral resources for employees requiring more intensive or long-term mental health services. EAP’s might also provide educational and informational resources on caregiver support for families dealing with Alzheimer’s disease.

Another key recommendation is the development of an internet resource referred to as the Rhode Island Alzheimer’s Disease (RIAD) Web Site. The site would enable better coordination among researchers and clinicians and assist them in recruiting participants for clinical trials and research studies. It would also provide consistent centralized support to individuals living with Alzheimer’s and their families by making practical care giving information readily and easily available.

“AARP has a long history of supporting Alzheimer’s patients and their families,” said AARP Rhode Island Advocacy Director Deanna Casey. “We applaud the effort in Rhode Island and Lt. Gov. Roberts’ efforts on behalf of those who suffer from the disease,” she says.

Casey says “far too many of our nonprofit’s 130,000 Rhode Island members are painfully familiar with Alzheimer’s, and the work of the many stakeholders in this effort is further indication of the great need to recognize our collective responsibility to help families through what is a most challenging journey.”

“Rhode Island has a tremendous opportunity to be a national leader in response to this disease,” she believes.

Briefing by Key Supporters

Two days ago, the full Alzheimer’s Work group kicked off the implementation phase of the Rhode Island State Plan on Alzheimer’s Disease & Related Disorders, discussing how to move forward with the goal of getting the recommendations up and running.

In Room 116 at the State House, Lt. Governor Elizabeth Roberts and Director Catherine Taylor of the Division of Elderly Affairs were clearly pleased to see their year-long initiative moving into its implementation phase to assist the State to handle a growing number of persons with Alzheimer’s Disease.

On the heels of a nationally released plan to address the Alzheimer’s epidemic, Taylor tells me that it was “great timing” for the Rhode Island General Assembly to enact a joint resolution to create a state plan to “respond to Rhode Island’s specific needs and gaps of service.” She credits the Rhode Island Chapter of the Alzheimer’s Association with the getting the ball rolling on this major health care policy initiative.

According to Lt. Governor Roberts, public sessions where care givers and people with Alzheimer’s Disease told their personal stories allowed the Subgroups to understand the personal impact of the devastating disease on both the afflicted and caregivers. For instance, the listening sessions made it very clear that the specific care needs of middle age adults with early onset Alzheimer’s Disease is quite different from those who are decades older, she said. Taylor agreed, citing adult day care eligibility requirements which keep those under age 60 from participating in this program, one that provides respite care to caregivers.

Lt. Governor Roberts states “younger people can not relate to programs that are developed for older people.” The patient must become the center of treatment rather than the treatment geared to age, she says.

Both Lt. Governor Roberts and Taylor do not want to see the State Plan sit on a dusty shelf, noting that it now becomes important to implement the written plan’s recommendations. “Let’s get the ball rolling now,” says Taylor.

While many of the State Plan’s recommendations may take time to implement, some are easy to implement like a Spanish language support group, says the Lt. Governor. Taylor states that RI has already requested a modification to the Medicaid waiver to expand Adult Day Health Center eligibility to individuals younger than 60 who have a diagnosis of Alzheimer’s.

Senior Police and Fire Advocates need to be trained in every Rhode Island community about Alzheimer’s Disease and resources available for caregivers, states Taylor. “These individuals know those who need programs and services in the community,” she notes, adding that an information conference is scheduled this week to train these individuals.

Lt. Governor Roberts believes that the State plan is a “living document” and it will be around as long as there is one person with Alzheimer’s Disease.”

To review the State 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.

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.

Rhode Island Nursing Homes Scramble to get Dental Coverage for Residents

Published in Pawtucket Times on March 3, 2003

According to Alfred Santos, executive director of the Rhode Island Health Care Association (RIHCA), one company’s business decision has left Rhode Island nursing homes scrambling to bring dental coverage to thousands of nursing home residents.

Over the last two months, Santos has met with state regulatory officials to inform them of this latest health-care access problem.

Here’s the scoop:

Access Dental Care, a major provider of dental services to nursing facilities, announced in a Nov. 4 member to its 40 nursing home clients that it would no longer offer onsite dental care, beginning Jan 1, 2003. The brief memo cited the extreme physical challenge to dental staff who provided dental services to residents outside the normal dentistry setting as the rationale for dropping onsite dental care.

But a nursing home trade group says that there may be a bigger issue behind Access Dental Care’s decision to not provide onsite dental services to nursing home residents.

RIHCA’s Dental Services Committee believes the actual reason for this business decision may well be tied to a low Medicaid reimbursement for dental care services, said Chair john Gage, who also serves as the trade group’s vice-president. Currently, Gage is the administrator at Riverview Heatlh Center in Coventry.

Gage said 80 percent of nursing home residents rely on Medicaid to pay for their dental services. Access Dental Care’s decision to not perform dental services on site will force m any frail, bedridden residents to be transported outside the facility for treatment, causing needless pain and suffering to them, he said.

“With a severe staffing shortage facing many facilities it will be even more difficult to assign a staff person to accompany the resident,” Gage noted.

According to Gage, it’s not so easy for nursing homes to find other providers to deliver onsite dental services. Complicating this health care access issue, Geage said, is HealthDrive’s policy not to contract with any nursing home to only provide dental services.

At press time, state officials from the Department of Health and Human Services were unavailable for comment about this payment issue.

State Sen. H. Elizabeth Roberts

(D-Cranston), who is chairing a subcommittee of the state’s Long-Term Care Coordinating Council (LTCCC) is currently looking at Medicaid issues, said Access Dental Care’s decision to not provide treatment to Medicaid recipients in the nursing home setting only exacerbates an ongoing problem. That Is, low Medicaid reimbursement  keeps low income seniors from receiving the appropriate preventative and restorative dental care they need.

Roberts said, “inadequate Medicaid rates make it hard for dentists to see residents, because the rates are so far below their costs. When combined with the medical complexity of nursing home patients, the low reimbursement is even more of a barrier, she said.

Robert’s LTCCC subcommittee plans to turn their attention to investigating the obstacles that keep dental care from being provided to Medicaid-eligible seniors in nursing homes and in their homes.

Bringing dental services to low-income children and seniors became an important issue to Roberts when care to a young constituent in the Rlte Care program required the use of an operating room for dental work because of severe tooth decay.

This operation could have been prevented with ongoing dental care, she said, noting that it “took the attention of state government to locale a provider who would accept the low Medicaid provider rate.”

Roberts is working to ratchet up the Medicaid reimbursement for dental care and to streamline the payment process through legislation she has recently introduced. The senator intends to bring together the state’s Dental Society and nursing homes to develop a plan to bring dental care to facilities that no longer received onsite dental service.

Robert Hawkins, state ombudsman and executive director of the Alliance for Better Nursing Home Care, agreed with Roberts’ assessment that there has been limited access to dental services in nursing homes over the past couple of years.

Hawkins has been pushing for appropriate dental treatment for nursing home residents for more than 25 years.

“Medicaid-eligible seniors who are mobile can more easy travel to dental clinics, if they can find treatment, especially with the low Medicaid rates,” Hawkins said. “For the old, sick and feeble, why should they have to go to through the turmoil of leaving the facility to get their dental care?

“Lack of access to dental care is a form of discrimination for those unfortunate to be lower-income and on Medicaid, Hawkins charged.

The Medicaid system has always been “penny wise and pound foolish,” Hawkins said. “When you don’t treat a dental problem early, residents don’t eat, they lose weight, develop bed sores, ultimately requiring costly hospital care.

“Can any one remember having a tooth ach all night long with no where to go?,” Hawkins asked.

Susan Sweet, a consultant to nonprofit groups and a longtime elder rights advocate, added there is also a lack of dental care for low-income seniors that extends into the community as well.

“For some reason, dental care is treated in the health care community as less important as other medical care,” she said, adding that reimbursement for dental care has lagged behind reimbursement for other medical care.

So where do we go from here?

Roberts’ plans to bring the state’s Dental Society together with nursing homes to craft a short-term solution is the first step in removing the obstacles of providing dental services to Medicaid-eligible residents. But a more permanent solution is needed.

With Gov. Don Carcieri poised to shortly release his budget, I hope he and the General Assembly counter Medicaid’s traditional “penny wide and pound foolish,” philosophy by increasing Medicaid payments for dental services. An inadequate reimbursement rate will ultimately reduce the needless pain and suffering that dental problems cause in nursing homes across the state.