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.

Meals on Wheels Should Be Expanded

Published in Pawtucket Times, October 25, 2013

A warm, nutritious meal combined with social interaction can go a long way to putting the brakes to a state’s spiraling Medicaid costs. According to new study findings detailed in this months issue of Health Affairs by Brown University public health researchers, expanding programs like Meals on Wheels, would save 26 of 48 states money in their Medicaid programs, just by allowing a person to stay in their own homes.

Kali Thomas, Assistant Professor of Research in the Brown University School of Public Health, says that if every U.S. state in the lower 48 expanded the number of seniors receiving meals by just 1 percent, 1,722 more Medicaid recipients avoid living in a nursing facility and most states would experience a net annual savings from implementing the expansion.

Put the Brakes to Medicaid Costs

According to the study’s findings, Medicaid cost savings would be different in every state. For instance, Pennsylvania would see the greatest net savings – $5.7 million – as Medicaid costs for nursing facility care decrease more than costs rose for delivering the additional meals. Meanwhile, Florida would see a net cost of nearly $11.5 million instead. Overall, 26 states would stand to see a net savings according to the Brown University Public Health analysis, while 22 would end up spending more.

Every state would enable more seniors, who could live independently except for meals, to remain in their homes regardless of whether they are on Medicaid.

Thomas, the study’s lead author, believes the study’s findings can provide guidance for state lawmakers and state policymakers as they hammer out budget funding for home-delivered meals programs, which are conducted under the Older Americans Act.

“We wanted to provide a roadmap for people,” Thomas said.

To calculate Medicaid savings, Thomas and co-author Vincent Mor, Brown’s Florence Pirce Grant Professor of Community Health, examined data, including how many seniors in each state receive home-delivered meals and how much it costs each state to provide those meals. She and Mor also took a look at nursing facility and Medicaid data to estimate the number of seniors that Medicaid maintains in nursing facilities who are “low-care,” meaning they may have the functional capabilities to live at home. Finally they looked at the per diem Medicaid pays in each state for seniors to live in nursing facilities.

Keeping Seniors at Home

The study findings allowed them to estimate the incremental cost of providing meals to 1 percent more seniors in each state, the number of additional seniors on Medicaid who would no longer need to live in nursing facilities, and how much less Medicaid would have to pick up for the higher level of care in each state.

The researchers found that the 1 percent expansion nationwide would bring meals to 392,594 more seniors at a cost of more than $117 million. Because 1,722 seniors would no longer have to live in costly nursing facilities paid for by Medicaid, total program savings would total $109 million.

The reason why the study’s findings indicate that additional food delivery costs outstrip Medicaid savings nationwide, even though most states would save money on a net basis, is that in some very large states with relatively few low-care seniors or relatively low Medicaid per diems, food costs outweighed the resulting Medicaid savings on a relatively large scale.

“In states like California and Florida where a 1-percent increase in the 65-plus population is a lot of people, it will cost those states a lot more to feed them,” Thomas said.

But, as she and Mor wrote in Health Affairs, “Our analyses suggest that 26 states with high Medicaid nursing home per diem reimbursement rates, a large proportion of low-care [nursing home residents on Medicaid], and a relatively small population of older adults, could save money.”

Thomas said states projected to lose money can opt to focus their efforts in ways that are more precise than an across-the-board expansion.

“We’re not proposing that all states simply increase the proportion of age 65 plus receiving meals by 1 percent,” she said. “But if they were to target these vulnerable people who are at risk for nursing home placement they would likely see more savings. This is a program that has the potential to save states a lot of money if it’s done correctly.”

Policymakers should consider not only the fiscal implications of providing home-delivered meals, which the study quantifies, but also the impact on individual seniors, said Thomas, who has seen the benefits anecdotally as a Meals on Wheels volunteer in both Florida and Rhode Island.

Thomas’s research, detailed in this month’s issue of Health Affairs, which was completed last December, is featured in AARP Rhode Island’s award-winning documentary Hungry in the West End. Creator and director John Martin of the AARP

Rhode Island state office screened the documentary in August at the Meals on Wheels Association of America National Conference in Boston. You can watch Hungry in the West End online at www.aarp.org/hungry.

Although the quality of life argument is easy to see, other researchers, like Thomas, are closely looking at how the Meals on Wheels program can lower Medicaid costs.

Based on a study by the Washington, D.C. based Center for Effective Government released in April 2013, every dollar invested in Meals on Wheels today could save taxpayers up to $50 in Medicaid costs down the road.

Other Benefits of Meals on Wheels

Ellie Hollander, President and CEO of the Meals on Wheels Association of America, observes that both Brown University and the Center for Effective Government studies specifically focused on Medicaid savings attributable to nursing homes, but do not take into consideration significant savings that would be realized through reduced Medicare costs as well, through fewer visits to physicians and the emergency room and less hospitalization or reduced readmissions.

Hollander says, “We have long known that the value of Meals on Wheels goes beyond the social and moral imperative of helping to address the epidemic of senior hunger in America. “The friendly visit and a safety check are a lifeline enabling seniors to live more independently and healthy in their own homes, which in turn avoids far more costly health care alternatives often paid through Medicare and Medicaid,” she says.

“The Brown University research proves what our work has long suggested to us: the Home Delivered Meals Program not only makes a positive impact for the senior, it is a good investment for the state as well,” says Executive Director Heather Amaral, Meals on Wheels of RI.

Another study is in the works to support Thomas’ efforts to closely look at the impact of nutritious home delivered meals. According to Hollander, a $350,000 grant from the AARP Foundation and the Meals on Wheels Association announced on Oct. 6 will enable Thomas to begin her randomized controlled trial of 600 seniors representing a cross-section of rural, urban, low income and minority populations across the country and a majority of the grant will be used to feed these seniors.

In this upcoming study, 200 seniors will receive meals daily, 200 more will receive a delivery of frozen meals once a week and then another 200 will continue on the waiting list as before as a control group. The study will compare quality of life, isolation, and health care utilization among individuals before and after they begin receiving meals and across the three groups.

Holland says, “Through our generous grant from AARP Foundation, and with Dr. Thomas and Brown University’s help, we will seek to monetize the value add of the “more than a meal” component of Meals on Wheels.”

A Call for Support

On AARP.org, Kathleen S. Connell, Rhode Island AARP State Director, calls on state lawmakers to take a very hard look at how they fund the state’s Meals on Wheels program. Connell urges Congress not to put the Meals on Wheels program on the budgetary chopping block as a way to chop the huge federal budget deficit.

Connell says that “Leaders need to be reminded that Meals on Wheels recipients aren’t unemployed workers waiting to return to jobs that will accompany an economic recovery. They are older retirees living on limited fixed incomes. With the cost of prescription medicines, healthcare and utilities going up, they sometimes can’t afford to eat. Many commonly sacrifice on food because of money worries – real or feared.”

Connell notes, “Meals on Wheels is a big deal [to seniors]. No one should take it for granted.”

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

Aging Groups Gear Up to Oppose Cuts in Social Security

Published in Pawtucket Times & Woonsocket
Call, October 18, 2013

Worried Americans woke up to good news yesterday morning. After weeks of political bickering Congress had finally hammered out a political compromise, one that would keep the nation from free-falling off the fiscal cliff.

Over the weeks, Democrats and political pundits had warned that not raising the nation’s debt ceiling by Oct. 17 could lead to the nation’s credit rating being downgraded. If this occurred, average Americans might see higher interest rates for mortgages, car loans, student loans and even credit cards. Higher business expenses, due to expensive borrowing rates, could even force businesses to stop hiring and start laying people off. Housing prices would drop and retail sales slow.

Because of Congressional gridlock, furloughed federal workers, along with the unemployed, would have less money to spend, reinforcing the negative impact on the nation’s economy.

House GOP leadership, catering to its Tea Party allies, led a political impasse between the Democratic-led Senate and President Obama, with demands that the president’s signature “Obamacare” healthcare law be defunded.

But, on the heels of an 11th hour deal, late Wednesday evening, the Senate passed, 81 to 18, a bipartisan temporary fix, supported by a large majority of Senate Republicans, ending the partial federal government shutdown and the threat of default. Hours later, the Tea Party-controlled House conceded to the political reality that any attempt to derail the Senate compromise would have a serious backlash against the GOP brand, passing the measure by 285 to 144.

On day 16 of the closing of the federal government, President Obama with the flick of his pen signed the bill ending the threat of the nation defaulting on paying its bills along with allowing hundreds of thousands of federal workers to return to their jobs.

This agreement raised the U.S. debt ceiling until Feb. 7 and gave the Treasury Department flexibility to temporarily extend its borrowing if Congress does not act before that date. Also, the measure keeps the federal government’s doors open until Jan. 15.

At the end of the Congressional vote, Senator Ted Cruz (R-TX) and his House Tea Party allies saw their efforts fail to delay or to scrap “Obamacare.” However, the GOP Senator did get lawmakers to make a tiny political concession to require the government to verify the eligibility of people receiving federal subsidies under the health care program.

Domestic Entitlements on Chopping Block

Of concern to aging groups, the agreement calls for creating a 12 member House-Senate bipartisan panel that would identify long-term deficit cuts, either overhauling the nation’s tax code or by identifying cuts in entitlement programs like Medicaid, Medicare or Social Security. The panel, led by Budget Committee heads Republican Rep. Paul Ryan of Wisconsin and Democratic Sen. Patty Murray of Washington, is charged with completing its task by December 13, but they are not required to come to an agreement.

“While Washington’s latest self-imposed crisis is over, this is no time to celebrate as another set of random deadlines loom, says Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare, remarking “Here we go again.”

“Yet another committee has been formed in which Social Security and Medicare are the big bargaining chips on Washington’s political poker table, noted Richtman, making it clear for him the “economic security of millions of Americans isn’t a game” .

“And while the vast majority of the American people do not support cutting Social Security and Medicare benefits, the President and some in Congress appear ready to do just that through proposals like the Chained CPI, expanding Medicare means testing to the middle class and raising the retirement age,” warns Richtman.

According to Richtman, President Obama stated “what’s good for the American people” is what should guide this next debate. “Cutting benefits to millions of middle-class Americans who took the biggest hit in the recession clearly does not fit that stated goal,” he says.

In a letter to Congress, Richtman, called for other ways to rein in the nation’s budget huge deficient rather than putting Social Security on the chopping block. Richtman suggests that “instead of cutting benefits, comprehensive reforms in the Affordable Care Act (ACA) that are containing costs in the entire health care sector, including Medicare and Medicaid, ought to be given a chance to work and to be strengthened.”

“Moreover, Social Security does not face an immediate crisis and is not driving either the short-term deficit or long-term debt. We believe Social Security should be strengthened for the long-term by raising the current payroll tax cap on earnings,” adds Richtman.

AARP, the nation’s largest aging advocacy group, was quick to comment on the bipartisan-brokered legislative deal, saying that “AARP is pleased that the President and Congress temporarily averted an economic crisis that threatened our members’ access to Social Security and Medicare, but we are deeply concerned that harmful cuts to these vital programs are on the table for a new round of budget negotiations.”

The statement acknowledges that “some Congressional lawmakers want to trade cuts to Medicare and Social Security benefits to pay for other government spending. Others are calling for cuts to these vital programs to reduce the deficit.” However, according to AARP polls, “the American people, on the other hand, across all ages and party lines, are strongly opposed to cuts to Social Security and Medicare.”

“Whether it is cutting their programs to reduce the deficit or using them as a piggy bank to pay for other government spending, their message to the President and Congress is clear: “Don’t bargain away my Medicare and Social Security benefits,” says the AARP statement.

As the House/Senate Bipartisan Committee begins to organize, AARP is preparing to mobilize its massive membership to block any attempts to slash Social Security bennies or cut Medicare, specifically through a Chained CPI to determine cost of living increases and any reductions in Medicare benefits.

Susan Sweet, a well-known aging advocate clearly sees that a Congressional tinkering with Social Security could severely hit the pocketbooks of older Rhode Islanders. She asks, “Is it too much to ask that seniors, disabled people and veterans not pay the price of huge farm subsidies for agribusiness corporations, disgraceful and unnecessary tax benefits for gargantuan oil companies that are making their biggest profits ever, and wasteful pentagon spending for projects in war zones that are either never built or are soon destroyed?”

She calls on Rhode Island’s Congressional delegation to “stay strong and not compromise on keeping Medicare and Social Security fulfill its promises to seniors, disabled people and veterans by keeping benefits at current levels.”

“Dollars to cut the federal deficit might just come from extra revenues which could be generated from allowing Medicare to negotiate with drug companies and lifting the Social Security payroll tax cap so that wealthy people pay the same rate as middle class and poor people,“ she says.

AARP Gears Up for a Fight

This week AARP launched a series of radio and print ads opposing a Chained CPI Social Security benefit cut and harmful cuts to Medicare in the nonprofit organization’s latest discussion of the nation’s fiscal issues. The print and radio ads target members of the House and Senate in 18 states. The ads follow letters to Congress and the White House, as well as postcards, e-mails and calls to members of Congress opposing a budget deal that would balance the budget on the backs of older Americans.

“Americans have paid into Medicare and Social Security and they’re tired of their hard-earned benefits being used as bargaining chips in another last-minute budget deal,” said AARP Senior Vice President Joyce Rogers. “They deserve responsible solutions that will strengthen Medicare and Social Security now and for future generations, not harmful cuts that will hurt all of us.”

Herb Weiss, LRI ’12, is a Pawtucket-based freelance writer who covers aging, health care and medical issues. His weekly commentaries can be found on his blog, herbweiss.wordpress.com. He can be reached at hweissri@aol.com.