Aging in Place in Your Rhode Island Community

Published in Pawtucket Times on May 2, 2022

As the graying of the nation’s population continues, older persons are choosing to live out their remaining years remaining in their communities in their homes, whenever possible. A new just-released study of adults age 50 and older from the AP-NORC Center for Public Research and the SCAN Foundation, finds a majority of older persons would like to age in place and are confident they can access needed services that will allow them to stay at home in their community for as long as possible.  

Gathering Thoughts About Aging in Place

According to this new national study released last week, two-thirds of the respondents think their communities meet their needs for accessing services like health care, grocery stores and social opportunities. The researchers found that all types of health care services are widely perceived as easy to access in their communities, and most feel that local health care understand their needs (79%) and take their concerns seriously (79%).

But, a closer examination of the small proportion of older Americans (Blacks and Hispanics) who feel less prepared and less supported in their community raises concerns about equity in access to the resources necessary to age in place.

However, the study reported that a few respondents say they had a hard time accessing needed services because of communication obstacles like a language barrier (11%), cultural barrier (8%) or age gap (8%); issues with affordability (15%); or issues of respect for their religious (4%) or cultural (3%) background. 

Those in urban areas—and suburban areas especially—describe their communities as having more supports for aging in place than those in rural areas. Older adults in suburban areas see their communities as doing the best job with meeting needs for healthy food, internet access, and the kinds of foods they want to eat. Suburban areas are also seen as better than rural areas in particular at meeting needs for health care and social activities. Older rural Americans are less likely than those living elsewhere to use a range of services simply because they aren’t available in their area. They are less likely to feel that community services are easy to get and designed for people their age than those in urban or suburban communities as well. And they are less likely to think a variety of health care services would be easy for them to access.

Income disparities are also associated with access to critical aging services. Those with incomes of $50,000 and below are less likely than those earning more to have access to services that are in their language (73% vs. 82%), close by or easy to get to (58% vs. 65%), respectful of their religious beliefs (57% vs. 65%), or designed for people their age (53% vs. 63%). When it comes to medical services, they are also less likely to have easy access to dental care, physical therapy, pharmacies, nursing homes, and urgent care than those earning more.

Additionally, those age 65 and older generally feel more prepared and report better access to important community services than those ages 50-64.

Aging in Place in the Ocean State 

For older adults aging in place, in their own homes, is by far the preferred model, says Mary Lou Moran, Director, Pawtucket Division of Senior Services at the Leon Mathieu Senior Center. “In fact, the theme of this year’s federal observance of Older Americans Month “Age My Way” focuses specifically on this very topic. The coordination, accessibility, and connection to services and programs is critical to the successful delivery of services and is where much work needs to be done,” she says. 

Moran says that senior centers located in communities throughout the state deliver needed information and assistance to older adults on accessing the needed  services to age in place.  Social isolation, access to transportation, food and housing insecurity, economic stability, and connectivity to services, are obstacles to enabling a person to stay in the community in their homes, adds Moran.

Over the years, Rhode Island’s inadequate Medicaid rates have become major obstacles to allowing a person to stay at home. However, recent state legislation, H 7616, to recreate a Department of Healthy Aging, spearheaded by Reps Carson, Ruggiero, McLaughlin, Contvriend, Speakman, Ajello and Potter, addresses some of the challenges that service providers are facing when trying to assist individuals to age in place. Moran adds, as the number of older adults continues to grow exponentially, the time has come to fully put the needs of our elders in the fore front to enable them to age with choice, dignity and respect.

According to Maureen Maigret, policy consultant and Chair of the Aging in Community Subcommittee of the Long-Term Care Coordinating Council, “Rhode Island is fortunate to have a number of government-funded programs that help older adults to age in place.” These programs include Meals on Wheels home-delivered meals program; Medicaid home and community services including home care, adult day services; assisted living and self-directed programs; Caregiver respite and support services; Home Modification grants to help make homes accessible; and elder transportation assistance for those age 60+ for medical trips, to get to adult day.  She also mentioned the Office of Healthy Aging’s Home Cost Share program for persons age 65+ and persons underage 65 with dementia who are not Medicaid eligible with income up to 250% of the federal poverty level and the wonderful programs offered at the state’s senior centers.

However, Maigret says that for some of these services such as home care there may be wait lists due to worker shortages. (People can find out about these programs or to find out what benefits they may be entitled to by calling the POINT at 401-462-4444).

There are also private services available for almost any service needed to help people age in place if they have the financial means to pay for them,” says Maigret.  

The National Village to Village Movement Comes to Rhode Island

While some of these volunteer programs in RI may offer some type of services such as transportation, a relatively new initiative has come to Rhode Island. “The Village Common of Rhode Island (TVC) provides a variety of supports through the efforts of almost 200 trained and vetted volunteers,” says Maigret. 

Maigret says that the goal of TVC is to help older persons to stay in their own homes and connected and engaged with their community. “This “neighbor helping neighbor” model started 20 years ago in Beacon Hill Boston and now there are 300 nonprofit “villages” operating across the country. TVC supports include transportation, running errands, home visits and telephone assurance, minor home repairs and light yard work, assistance with technology, and a virtual caregiver support program. A robust weekly calendar offers virtual events, and a monthly newsletter keeps members and guests informed. All this is done with a lean 1.5 person staff, a working board of directors and almost 200 volunteers,” she notes. 

“I had heard about the “village” model some years back and supported efforts to start a “village” in Rhode Island, she says. “It amazes me that a small band of committed volunteers were able to put all the pieces in place to operationalize a “village” and to see what has been accomplished. There are now active “villages” in Providence, Barrington, Edgewood/Cranston and Westerly with almost 300 members and more “villages” are under development. One of the priority goals of the Board is to reach out to underserved neighborhoods in our urban and rural areas to listen to people and find out what is important to them and what type of “village” program might work in their area,” she says. 

“We know that transportation is a huge issue for folks living in our rural areas and that is a huge concern. And, based on findings of the 2021 RI Life Index: Older Adults in Rhode Island(from RI Blue Cross Blue Shield//Brown University School of Public Health), we know that older persons of color living in our core cities have lower perceptions of community life, access to healthcare and experience lower food security and access to technology,” adds Maigret.  

“Research on the fairly new “village” programs shows promise in fostering feelings of being connected to others and suggest older women living alone with some disability most likely to experience improved health, mobility and quality of life (https://pubmed.ncbi.nlm.nih.gov/28509628/.),” says Maigret, noting that this is an important finding as Rhode Island has such a high portion of older adults living alone.

TVC President Anne Connor (74) says she has been a member and volunteer since 2015. “That we are volunteer supported is noteworthy and having an Executive Director, Caroline Gangji, (formerly acting Executive Director at Age Friendly RI), improves our ability to serve our members”, says the retired librarian and paralegal.

As TVC founder Cy O’Neil once said, ” …you don’t create a fire house when the house is burning.”  TVC is more than services – it is the relationships we build that are key to our success, says Connor.  

For details about The Village Common Rhode Island, go to https://www.villagecommonri.org/.

For specifics programs and services offered by the Rhode Island Office of Healthy, go to  https://oha.ri.gov/.  

Controversial move by CMS limits coverage for new Alzheimer’s drug, Aduhelm 

Published in RINewsToday on April 25, 2022

Earlier this month, amid the pleas of the Alzheimer’s Association, the National Committee to Protect Social Security and Medicare, and other aging advocacy groups, the Centers for Medicare & Medicaid Services (CMS) made its final decision to limit their Medicare coverage of the controversial Alzheimer’s drug, ADUHELM® , for only those Medicare recipients participating in clinical studies overseen by the National Institutes of Health (NIH) or in other approved clinical trials.

When releasing its decision on April 7, CMS noted from the onset, the federal agency “ran a transparent, evidence-based process that incorporated more than 10,000 stakeholder comments and more than 250 peer-reviewed documents into the determination” to make its decision.

Calls for More Rigorous Studies

According to CMS, over 6 million older Americans are believed to have Alzheimer’s, and this prevalence is expected to rise to 14 million by 2060, barring effective interventions. CMS stated that effective treatments are needed, and because of the early, but promising, evidence and the immense burden of this devastating disease on the Medicare population, the agency is finalizing Medicare coverage, calling for rigorous studies approved by the U.S. Federal Drug Administration (FDA) and NIH to help answer whether this class of drugs improves health outcomes for patients.

“Science, evidence, and stakeholder input led our team of career civil servants and clinicians through this national coverage determination process. There is potential for promise with this treatment; however, there is not currently enough evidence of demonstrating improving health outcomes to say that it is reasonable and necessary for people with Medicare, which is key consideration for CMS when making national coverage determination, said Dr. Lee Fleisher, CMS Chief Medical Officer and Director of the Center for Clinical Standards and Quality, in a statement announcing CMS’s regulatory payment decision.

“In arriving at this final decision, we looked at the unique circumstances around this class of treatments and made a decision that weighed the potential for patient benefit against the significance of serious unknown factors that could lead to harm,” added Fleisher. “If a drug in this class shows evidence of clinical benefit through the traditional FDA approval process, then CMS will provide broad access and ensure the results from the rigorous trials are generalizable for people with Medicare participating in a CMS-approved study, such as a registry,” she said, noting that this decision was made to provide CMS flexibility to respond quickly to providing coverage for any new drugs in this class showing a clinical benefit. 

Biogen, a biotechnology company that manufacturers ADUHELM®m , was quick to give its opinion about CMS’s final decision about coverage of this drug. The Cambridge, Massachusetts based company charged that “this unprecedented decision effectively denies all Medicare beneficiaries access to ADUHELM®m , the first and only FDA approved therapy in a new class of Alzheimer’s drugs. It may also limit coverage for any future approved treatment in the class. These coverage restrictions, including the distinction between accelerated approval and traditional approval, have never been applied to FDA-approved medicines for other disease areas.”

When additional data from this new class of treatments become available, Biogen urged CMS to reconsider its final decision for all FDA-approved amyloid-beta targeting therapies. The company says that it is carefully considering its options and will provide updates as the company further evaluates the business impact of this decision.

Creating Unnecessary Barriers to Care 

Calling the CMS decision wrong, the Chicago-based Alzheimer’s Association expressed deep disappointment, charging that it has essentially ignored the needs of people living with Alzheimer’s disease. “CMS has created unnecessary barriers for individuals with Alzheimer’s disease. Patients with Alzheimer’s, a fatal disease, should have FDA approved treatments covered by Medicare just as those facing other diseases do,” said Harry Johns, Alzheimer’s Association chief executive officer. 

Notably, CMS has said in its decision the only way for patients to access the first approved FDA treatment targeting amyloid in those living with Alzheimer’s is to enroll in a clinical trial. While we note CMS has expanded where those clinical trials may take place, in reality this remains an unnecessary and never before imposed barrier to access an FDA-approved treatment, says Johns.

“People living with MCI, Alzheimer’s disease and other dementia deserve the same access to therapies given to those living with other conditions like cancer, heart disease and HIV/AIDS. They deserve the opportunity to assess if an FDA-approved treatment is right for them,” said Joanne Pike, Dr.P.H., Alzheimer’s Association president. “Drugs that treat people in the early stages of Alzheimer’s could mean more time for individuals to actively participate in daily life, have sustained independence and hold on to memories longer,” she said.

According to the Alzheimer’s Association, CMS has incorporated one of its recommendations into the final rule. “Importantly, CMS has decided to utilize a registry for future treatments granted full FDA approval. The Alzheimer’s Association registry will play an important role in collecting and analyzing real-world data. This registry will monitor and report clinical and safety endpoints for patients treated with FDA-approved AD therapies, including accompanying diagnostics, to track the long-term outcomes associated with these therapies in real-world settings. Similar successful registries in heart disease and cancer have enabled researchers, clinicians, health systems and payers to track the long-term performance of therapies using a large, real-world evidence dataset,” the advocacy group says. 

The Alzheimer’s Association also expressed strong concern about the immediate impact CMS’s decision will have on Alzheimer’s and dementia research and innovation. “The agency’s decision to essentially reject the Accelerated Approval Pathway for monoclonal antibodies targeting amyloid for the treatment of Alzheimer’s disease is broad overreach. Accelerated approval is a pathway created by Congress and utilized by FDA to allow for earlier approval of drugs that treat serious conditions, and that fill an unmet medical need. Alzheimer’s is a deadly disease with no survivors,” stated the advocacy group.

“The decision by CMS is a step backward for families facing Alzheimer’s disease,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer. “Years of increased research funding has led to more progress and innovation than ever before, but today’s decision may halt this progress as developers question if there is a pathway forward to coverage,” she said.

Calls for Reducing Cost of Medicare Part B Premiums

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare, calls on CMS to “swiftly reduce the hefty 2022 Medicare Part B premium increase ($21.60 per month), now that the agency has made its final decision to limit coverage of the controversial Alzheimer’s drug, ADUHELM®m, to patients in clinical trials.” 

“The spike in Medicare Part B premiums was partly based on the drug’s exorbitant cost (originally priced at $56,000 per year) and the potential expense of wider coverage,” says Richtman, noting that the agency is still “reviewing” Part B premiums, under previous direction from HHS Secretary Xavier Becerra. “Medicare beneficiaries struggling to pay their bills need relief from this year’s premium increase as soon as possible, warns Richtman. .

“The Aduhelm controversy highlights the urgent need for Medicare to be able to negotiate drug prices with Big Pharma. If the price of Aduhelm had been negotiated, it is unlikely that it would have impacted Medicare premiums so dramatically in the first place,”  adds Richtman, 

For a fact sheet on Medicare coverage policy for monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease, visit https://www.cms.gov/newsroom/fact-sheets/medicare-coverage-policy-monoclonal-antibodies-directed-against-amyloid-treatment-alzheimers-disease.

To read the final NCD CED decision memorandum, visit https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=N&ncaid=305.

New efforts on Smith Hill to increase Medicaid reimbursement rates

Published in RINewsToday on April 18, 2022

On March 8th, a press conference on Smith Hill put the legislative spotlight on introduced rate setting legislation intended to fix Rhode Island’s long-time problem of paying insufficient reimbursement rates to human-service agencies delivering social, human and clinical services to Medicaid recipients. 

Over 80 human service providers, clients, and aging advocates, came to support Sen. Louis DiPalma and Rep. Julie Casimiro’s two pieces of legislation to fix a broken Medicaid payment reimbursement system. These bills would provide for periodic rate review/setting processes to ensure accurate and adequate reimbursement of social, human and clinical services.

“Senate President Dominick J. Ruggerio came, giving his blessings, too. “It is critical that we undertake a review of reimbursement rates so that we have a thorough understanding of the data and we can make informed decisions,” said the top Senate lawmaker. “These bills will help bridge the gap and bring reimbursement rates where they need to be,” he said.

The Reimbursement Fix…

DiPalma and Casimiro’s bills do not specify dollar amounts for adequate hourly wages but would hammer out the “periodic rate review and setting process.”

The first bill (2022-S 2311 / 2022-H 7180) establishes a process which would require the Executive Office of Health and Human Services (EOHHS), assisted by a 24 member advisory committee, to provide review and recommendations for rate setting and ongoing review of social service programs licensed by state departments, agencies and Medicaid. 

The second one (2022-S 2200 / 2022-H 7489) establishes a process which would require Executive Office of Health and Human Services (EOHHS), assisted by a 24 member advisory committee, to provide review and recommendations for rate setting and ongoing review of medical and clinical service programs licensed by state departments, agencies and Medicaid.

At press time, legislation has been referred to the Senate and House Finance committees for review. 

“Years of stagnation in our state’s Medicaid reimbursement rates have negatively affected hundreds of thousands of Rhode Islanders who rely on a wide range of services,” claims DiPalma, (D-District 12, Middletown, Little Compton, Newport and Tiverton), a long-time advocate at the Rhode Island General Assembly for human services providers and disabled Rhode Islanders.  

DiPalma says a comprehensive rather than a piece meal approach is now needed to address this reimbursement issue. Stressing that the two bills would fix the continuing reimbursement issue. “For our providers, the people they serve, and the future of our state, it is imperative we act now,” he warns. 

Rhode Island’s healthcare system is suffering a crisis of care that’s only worsened due to the pandemic, charges Casimiro (D-Dist. 31, North Kingston and Exeter), noting that the state’s human health agencies are understaffed and under-supported and it is hurting the state’s most vulnerable residents.  

“Our reimbursement rates have remained too-low and unchanged for many years and the residents of our state cannot access the crucial services they need if there is no one there to provide the care,” said Casimiro, urging Rhode Island lawmakers to stop the exodus of human services workers for their jobs.  Proper oversight of the rate setting process and appropriate reimbursement rate increases will ensure a high-level of care provided, sorely needed now, she says.    

Providers call for ratcheting up RI’s Medicaid payment rates

Long-time aging advocate and former Representative, Maureen Maigret, translated the rate payment issue into a “dollar and cents” example. Maigret, a policy consultant who previously chaired the Long-Term Care Coordinating Council’s Aging in Community Subcommittee, noted that the Bureau of Labor Statistics show in 2020 in Rhode Island the average wage for a home health aide was less than $15 per hour and nursing assistants slightly $16. “These low wages do not come close to meeting one’s basic needs, forcing workers to work more than one job or, as more are doing, just abandoning this type of work altogether for better pay, she added, stressing that this was before these workers faced 7% inflation and gas prices reaching over $5 per gallon,” she said.

“High workforce turnover rates are especially troubling for patients receiving homecare, who value building a long-term relationship with someone coming into their home frequently, says Bernie Beaudreau, Executive Director, the Senior Agenda Coalition of Rhode Island, “Seniors cannot age with independence and dignity if homecare workers are not treated with respect in wages and working condition,” he says.

This legislation is a step in the right direction and provides the state an opportunity to move toward the realignment of reimbursement rates that accurately reflect the actual cost of the delivery of behavioral health treatment and services,” says Susan Storti, President and CEO of The Substance Use and Mental Health Leadership Council of Rhode Island.

“These bills ask our state a clear, direct question: do we, or do we not, support inclusive lives in our communities? We must reply with an equally clear answer: ‘Yes, we do’ and pass S-2311 and H-7180, says Tina Spears, Executive Director, Community Provider Network of Rhode Island, noting that for CPNRI and its members it is all about inclusion of children and adults with disabilities and behavioral health conditions in our society. 

Time to pay providers adequately  

With all 38 Senators co-sponsoring both his Senate bills, DiPalma is pleased with the positive reception his legislation has received in the upper chamber. “We cannot delay any longer. The time to act is now,” he says, stressing that it’s important for lawmakers to get these bills over the “goal-line. “There are hundreds of thousands of Rhode Islanders counting on us to get this done,” he adds.

DiPalma says that a Senate hearing is being planned  to consider S 2311 and S 2200 on Thursday, April 28 at the Rise of the Senate in the Senate Lounge. All are encouraged to attend the hearing and voice their support.