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

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.

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Raimondo Rolls out Educational Initiative to Financially Empower Rhode Islanders

Published in the Pawtucket Times, August 2, 2013

Everybody has been hit hard over the years with the economic downturn in the Ocean State. The statistics are startling about the impact on Rhode Islander’s pocketbooks. According to the Office of the General Treasurer, two-thirds of Rhode Islanders reported some difficulty in covering their expenses and paying bills. Startling the average borrow in our state has $13,221 in credit card debt, the 5th highest amount in the nation. Almost 47% of the Ocean State’s homeowners are “cost burdened,” that is home ownership costs more than 30 percent of their income.

During her first term, overcoming strong opposition of union groups, Rhode Island General Treasurer Gina M. Raimondo, working with Governor Chafee and leadership in the General Assembly, successfully redesigned Rhode Island’s state-administered public employee pension system. Now the Smithfield native, and mother of two, who graduated from LaSalle Academy, Harvard University and Yale Law School, who became a Rhode Scholar at Oxford University, goes into full gear to financially empower the state’s residents to make informed disciplined choices to achieve their financial goals.

Raimondo’s interest in financial empowerment came from her memories of growing up in a modest-income family, and a house with three kids and her grandfather. “My family had to become very smart about saving and budgeting,” she noted. By financial juggling and hard work, she was able along with her two siblings to attend college. According to Raimndo, getting a good college education allowed her to climb up the career ladder and eventually run for General Treasurer.

Building a Prosperous Financial Future

Recognizing that everyone could use a little free help understanding and managing their finances, last October, Raimondo, in partnership with the Providence-based Capital Good Fund, kicked off their financial empowerment initiative to provide guidance, though the Rhode Island Financial Coaching Corps, to provide free financial help to Rhode Islanders balance their home budgets, managing debt, building up credit and plan for their retirement.

According to Raimondo, becoming financially secure and taking care of your family can become tricky with the huge number of financial products available today. One can become confused with the different types of mortgage and banking products available, especially the proliferation of pay day loans, credit cards and reverse mortgages, she says. “If people are not careful they can be hit hard by hidden fees or hidden risks by choosing the wrong product,” she says.

Recently, Raimondo took her Smart Money Tour out on the road visiting local libraries, farmers markets and senior centers, “right into the community,” she says, noting that it might become a permanent initiative if it proves to be successful. At these locations treasury staff, through an online computer data base, (treasury.ri.gov/unclaimed) also helps people locate their lost or abandoned property for free. Unclaimed property includes items such as long forgotten bank accounts, stocks and dividends and life insurance claims. During the last fiscal year, Treasury returned more than $8 million to over 8,000 Rhode Islanders.

Supporting Common Goals

According to Executive Director Andy Posner, of the Providence-based Capital Good Fund, he met Raimondo during her campaign for Treasurer and found a kindred soul. She had similar interests in bringing financial literacy to Rhode Islanders and a desire to fight predatory practices (pay day loans that have interest rates of 260 percent and rent-to-own centers where consumers ultimately pay more than the product is worth).

Capital Good Fund trains volunteers, for the Empower RI initiative, in financial coaching techniques and provides them with curricula to use either in one-to-one sessions with employees at companies who contract for the service or to those interested in getting help, learning about this assistance at community events or through newspaper coverage or social service agencies.

Since the inception of the program over 200 Rhode Islanders have been helped, says Posner. Currently, the Financial Service Corps, has 17 active volunteers, he added.

Joining the Financial Coaching Corps

Jerry Leveille, a Burrillville resident, jumped at being a volunteer with the Financial Coaching Corps after reading the mission of Empower RI, “Moving Rhode Island forward – one person at a time – through financial empowerment.” The 68-year old retired banker, who served as a senior vice president and lending officer, had worked for over 51 years at Warwick-based Greenwood Credit Union.

Filling out the application at the Capital Good Fund, he was accepted, trained and now has worked with two clients.

In one case, Leveille stated that 83-year-old widow learned the art of balancing her checkbook after the death of her husband, who had managed the family’s household account, paying the bills for over 58 years. The woman still coping with the recent death of her husband only needed a couple of sessions to learn this financial skill.

Meanwhile, Leveille says that a 62-year old woman who worked for a large Rhode Island company for over 30 years made a personal decision to retire. She would later learn that this financial decision would reduce her income by a whopping 40 percent. This was combined with mortgage problems. The single older woman owed more on her family homestead than its market value. She could not get her out of state mortgage company to lower the eight percent interest rate or allow her to extend payments.

Before coming to Leveille “her only choice was to walk away from the mortgage or continue to work,” he said, noting that if this occurred the lender would most likely suffer a $60,000 loss. “As a volunteer I was not going to talk her out of retirement, it was not my role to do this. Ultimately, the Financial Coaching Corps. volunteer would refer his client to Rhode Island Housing who is in the process of negotiating a lower interest rate on her behalf.

“We must be very nonjudgmental when we work with our clients,” says Leveille, noting that humans do make mistakes they regret when making bad financial decisions. “We are there to be helpful. It is what it is and we try to find the appropriate solution,” he says when counseling client.

Cumberland resident, Randy Sacilotto, who serves as Navigant’s vice president of business and community development, joined Raimondo’s effort to ratchet up the state’s financial literacy knowledge. Sacilotto, with 21 years working for the credit union, also brings to his clients the expertise he gained from training to become a certified financial counselor, accredited by the National Credit Union Foundation.

Sacilotto, 52, has met with two individuals and one couple, teaching them how a household budget works and another couple on tips on refinancing their home.

Working on budgeting, Sacilotto told his clients to track the spending of “every penny,” for two to four weeks. Write everything down, he says, because you will learn where your money is spent.

“We don’t always actually know what we spend on things,” he says, and if you track your results, cutting spending on things you don’t need can allow you to put your money into more important things, like saving for a house,” notes Sacilotto.

Finding Satisfaction in Financial Problem Solving

Emerson Gardner, a retired manager of the New York-based Bank of America’s International Banking Office, brought this experience and working in the City’s AARP Money Management Program, to the Ocean State in 2010. Two years later he would join Raimondo’s Financial Coaching Corps.

One of the original volunteers, Gardner is already working on his fifth client (their ages range from early 30s to their 50s). “Any time you help a person get their credit rating up or confront their debt problems it begins with creating a budget,” he says, noting that people need to learn how to live within their incomes.

While Gardner’s clients profit from his expertise gleaned from his banking days and a Masters of Business Administration received from Harvard University, he benefits, too. “I get satisfaction in helping clients solve their problems.” The retiree likes the flexibility of the program, allowing him to decide who to take and when to schedule the counseling session.

“For a person who has financial skills and the time to give because they are retiring, it is a great thing to do,” quips Gardner.

Those interested in volunteering for the Financial Coaching Corps, or meeting with a financial coach should visit http://www.fcCorpss.org.

Pawtucket’s Smart Money Tour is scheduled for August 30, 2013, from 1:00 p.m. to 2:00 p.m. at the City’s Leon Mathieu Senior Center, 420 Main Street, Pawtucket RI.

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