Tag Archives for U.S. Department of Health and Human Services

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.

Gridlock Threatens Elder Programs, Services

Published in Pawtucket Times, October 11, 2013

At press time, this week continued heated partisan bickering on Capitol Hill that threatens to unravel a fragile economy, along with putting the brakes to an economic upturn that slowly was pushing the nation out of its financial doldrums. With this stand-off, a partial shutdown of the federal government continues. The Republican-controlled House, captured by the ultra-right Tea Party, has refused to budge, opposing the passage of a continuing resolution (CR) to fund government agencies past Sept. 30. House Republican leadership has demanded that passage of the CR must be tied to either the repeal or partially dismantling of President Obama’s signature achievement, the Affordable Care Act. The Democratic President along with a Senate Democratic leadership say no.

Meanwhile, the Democratic-controlled Senate passed a “clean” CR to provide funding through Nov. 15, not putting ACA on the GOP’s chopping block. Even if both legislative chambers sort out differences and hammer out a compromise agreement to open the doors of the federal government, this would not shield the nation from the disastrous impact of the impending second round of sequester cuts and a Oct. 17 deadline for the government to raise the debt ceiling. No action means a first-ever default on the nation’s debt that could send the stock market tumbling and push the nation’s and the world’s economy into a tailspin.

Treasury officials say that congressional deadlock and no action will result in the federal government running out of cash to pay its bills if Congress does not act to raise the nation’s debt ceiling this month.

Get Your House in Order

With the debt crisis looming, AARP Executive Vice President Nancy LeaMond called on Congressional lawmakers to settle the debt ceiling debate to avoiding default on the nation’s debt, specifically to protect the retirement of seniors and future generations.

In her letter, LeaMond expressed concern that any delay in raising the nation’s debt limit may unnecessarily increase borrowing costs, negatively impact retirement savings accounts and harm the nation’s fragile economy.

“Our members are worried that the benefits they have earned may be cut as part of a deal to reduce the deficit, fund government operations, or increase the debt ceiling, and they are increasingly worried that if there is no agreement very soon, they may not receive their Social Security checks and may lose access to their health care,” noted LeaMond.

Ten days ago, the nation entered a government shutdown, forcing furloughs of 800,000 workers, without pay, and suspending services. The last time this occurred was 17 years ago during the Clinton administration. The Congressional impasse has closed national parks and monuments, federally owned museums, such as the Smithsonian, offices overseas that give visas to foreigners hoping to visit the United States, and even many federal regulatory agencies.

So, how does this impact programs and services for older Americans? Simply put, impact on programs and benefits may vary throughout the federal bureaucracy.

The U.S. Department of Health & Human Services will furlough over 40,512 of its 78, 198 employees. The largest percentage of these employees comes from “grant-making and employee-intensive agencies,” such as the Administration for Community Living. This federal agency would not be able to fund the Senior Nutrition programs, Native American Nutrition and Supportive Services, Prevention of Elder Abuse and Neglect, the Long-Term Care Ombudsman program, and Protection and Advocacy for persons with developmental disabilities.

As reported, Social Security checks will be mailed, Medicare and Medicaid benefits will continue to be paid out, because these are considered mandatory programs, not discretionary ones. Benefits under the Supplemental Nutrition Assistance Program, commonly referred to as food Stamps, will continue in October, despite the federal shutdown.

Food Program Takes Budgetary Hit

Jenny Bertolette of the Meals on Wheels Association of America charges that the Federal Government shutdown “adds insult to injury as Senior Nutrition Programs are already dealing with devastating cuts due to sequestration, funding that has never kept up with inflation, increased food and transportation costs and increased need as significantly more seniors are aging and struggling with hunger than ever before.”

Bertolette says that should a shutdown persist for any considerable length of time, local Meals on Wheels programs that rely on government funding could experience a delay in reimbursements for meals and services delivered. Facing such funding uncertainty, programs could be forced to suspend meal services, create or expand waiting lists for meals, cut the number of meals or days they serve and reduce delivery days.

Jenny Bertolette of the Meals on Wheels Association of America charges that the Federal Government shutdown “adds insult to injury as Senior Nutrition Programs are already dealing with devastating cuts due to sequestration, funding that has never kept up with inflation, increased food and transportation costs and increased need as significantly more seniors are aging and struggling with hunger than ever before.”

Bertolette says that should a shutdown persist for any considerable length of time, local Meals on Wheels programs that rely on government funding could experience a delay in reimbursements for meals and services delivered. Facing such funding uncertainty, programs could be forced to suspend meal services, create or expand waiting lists for meals, cut the number of meals or days they serve and reduce delivery days.

Heather Amaral, Executive Director of Meals on Wheels of Rhode Island, agrees, noting that her Providence-based nonprofit program, has already lost $70,970 in 2013 federal funds due to last year’s sequestration cuts.

Amaral says that as a result of these cuts, to maintain meal delivery at the same numbers as last year (360,299 meals), she had to reduce menu items that were once offered. “Although the government shutdown doesn’t have an immediate impact on our program, I am concerned that it could lead to additional cuts,” she says, noting that should the shutdown continue until year end, the nonprofit agency will be forced to rely on donations and reserves to maintain service levels.

“We provide a safety check along with each home delivered meal and are often the only contact our client has that day, adds Amaral, who stresses that her program may be the only thing keeping a senior at home. “If we are forced to reduce the number of meals we serve, these people may be forced to live with a family member or enter a nursing home,” she warns.

Meanwhile, the U.S. Housing and Urban Development (HUD) agency will be unable to fund additional payments to public housing authorities, many providing shelter to older Americans. HUD expects the 3,300 Public Housing Authorities it funds to have enough funding to get through the month of October. But, if the shutdown continues, some public housing authorities will not be able to maintain normal operation.

Also, Quarterly formula grants will not go out for the Low-Income Home Energy Assistance Program (LIHEAP), the Social Services Block Grant (SSBG), or the Community Services Block Grant (CSBG).

Nutrition programs serving older adults face a double whammy with no FY14 appropriations and no reauthorization of the Farm Bill. The Senior Farmers’ Market Nutrition Program expired along with the Farm Bill on Sept. 30. The Commodity Supplemental Food Program (CSFP) requires appropriations to continue operating.

According to well-known Aging Advocate Susan Sweet, this is a partial shutdown that hasn’t really hit aging programs yet. There are funding reductions in programs for older people, but that is due to the sequester, which will have another round of cuts in October, she says.

Sweet predicts that the negative effects of the shutdown itself will become worse with every passing day. For example, there is doubt that veterans benefits and social security will be paid in or after October absent a funding bill. Death benefits, including burial subsidies, have not been paid to the survivors of fallen armed forces members, she notes. Because of the public outcry regarding this outrage, a private charity has stepped up to pay the benefits with the promise of reimbursement when the government re-opens.

“Reduced to its true absurdity, the United States of America has lost the ability to rationally govern,” states Sweet. “The sequester cuts, previously characterized as “cuts for dummies”, have been implemented, we are in a war yet cannot bury our dead from that war, can’t even agree on a temporary fix, and are arguing whether the US should pay its bills or default,” she adds.

“It is perplexing, and we have heard many, many concerns from Rhode Island members, “ said AARP State Director Kathleen Connell. “Since the U.S. government has never failed to meet its financial obligations, we don’t know what payments it could make if the President and Congress fail to reach an agreement.

“One cannot help but wonder what effects this uncertainty has on people – many of whom struggle enough with health and financial issues,” Connell added. “We’re doing whatever we can to urge Congress and the President to act responsibly.”

Herb Weiss, LRI ’12, is a Pawtucket-based writer covering 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.

Report Examines Myths, realities of Consumer -Directed Services

Published in Pawtucket Times on March 17, 2003

Eighty-nine-year-old Lillian Brannon raves about the Arkansas-based “Independent Choices (A Cash and Counseling Demonstration Program) that allowed her to stay independent and at home with the assistance of four aides.

The program “has really changed my life so much,” she says. “It has really helped me to live more independently than I have ever have …I would not trade it for anything.”

Tammy Svihla, who suffers from MS gives a thumbs-up to the New Jersey-based “Personal Preferences” programs that has allowed her to more creatively used Medicaid funds. Svihla notes she was able to purchase a “Lazy-boy” lift chair, usually not covered by Medicaid. It was logical for Svihla to purchase the lift chair because it was difficult for her to get up from her couch because of soft cushions.

These two  testimonials, among three others, set the tone for a newly released report that examines the myths and realities that now surrounds the philosophy of consumer-directed services.

The orientation allows consumers to make choices about the services they receive, assess their own needs, and determine how ad by whom these needs should be met, and then  monitor the quality of services they have received.

“The Myths and Realities of Consumer-Directed Services for Older Persons,” authored by Marie R. Squillace, PhD., federal project officer, National Family Caregiver Support Program with the U.S. Department of Health and Human Services, and President and CEO James Firman, Ed.D., of the National Council on Aging, attempts to build upon current knowledge obtained from research and demonstration projects to make   consumer direction “an integral part of the options available for all older persons who may need long-term care.”

Throughout the 24-page report the authors use personal experiences, case studies, and research to dispel 12 myths about the philosophy of consumer-directed services.

Let’s take a look at three of the myths.:

Squillace and Firman urge the reader to not believe the myth that consumer-directed services are not appropriate for seniors with disabilities or for those with cognitive impairments.

Here’s the reality: studies of programs like California’s In-Home Supportive Services (IHSS), show that many elderly can express daily preferences for care and can benefit from that control. For more than 30 years, low-income persons over age 65 who are enrolled in the IHSS program have  hired, fired, trained, scheduled and supervised individual providers.

Moreover, the Family Caregiver Alliance in San Francisco adds research indicates that persons with early to moderate cognitive impairment still can express daily preferences for their care, sharing their values and preferences.  For those with significant cognitive disabilities, a University of Maryland Center on Aging report suggests family caregivers, a circle of friends, or close associates who know the consumer well can interpret the person’s non-verbal expressions.

Another myth of the Squillace and Firman report is that “self-directing consumers will “misuse funds” or “be exploited.”

Not true, say the authors, citing “Cash and Counseling Programs” that will allow consumers to use their alliances to purchase needed services so they can stay in their own homes with the assistance of a fiscal intermediary organization (FIO).

In reality, the authors note most prefer to have their funds held by the FIO, which conducts bookkeeping and accounting services to help them manage their individual helpers and pay taxes for their workers. The management can minimize concerns about misuse of funds and financial exploitation of vulnerable individuals while diminishing the administrative responsibilities placed on self-directed consumers, the report says.

Finally, some spread the myth that consumer direction is just an experiment, noting more, nothing less. But Squillace and Firman say this philosophy has progress “far beyond the experimental phase.

A growing number of consumer advocates, program administrators and policy makers are now embracing this philosophy.”

The authors recite a 2001 survey that identified 139 consumer-directed service programs that were operating across most of the nation, except Tennessee and the District of Columbia. “The estimated total number of people being served by these programs reached about half a million.

Squillace and Firman state: “Consumer direction is not a sliver bullet or a panacea for the nation’s long-term care challenge, but it is an important part of the solution.”

I believe that.

If they haven’t, hopefully the directors of the Department of Elderly Affairs and Human Services will develop programs that encompass the philosophy consumer directed services.  Enhanced quality of life can be a result of aging baby boomers and seniors controlling the choice over the purchase of their long-term care services. Ultimately, it is all about empowerment.

For more information about consumer-directed care, visit www.consumerdirection.org.

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