The COVID-19 Crisis at NJ’s Long-Term Care Facilities

May 20th, 2020


We’d like to thank guest blogger and NJFA friend
Laurie Facciarossa Brewer, NJ’s Long-Term Care Ombudsman, for her blog post.

By Laurie Facciarossa Brewer, NJ’s Long-Term Care Ombudsman

The COVID-19 crisis in long-term care facilities is an unprecedented national tragedy. Around the country, tens of thousands of vulnerable residents of nursing homes and assisted living facilities have died.

In fact, as of today in New Jersey, more than 5,400 long-term care residents have lost their lives due to the pandemic. To better put this into perspective, these deaths are more than half of New Jersey’s total cases.

Not only are the numbers themselves horrifying, but the inability of family and friends to physically be there with their loved ones in their final moments-as facilities were locked down to attempt to prevent more infection-makes it all the more painful and traumatic.

I mourn and hold dear the loss of each of these residents and wish peace and healing for their loved ones. And I am deeply concerned about the health and welfare of the long-term care residents who remain, and about the staff who care for them.

As an independent state agency that advocates for long-term care residents by investigating allegations of abuse and mistreatment, the New Jersey Office of the Long-Term Care (NJ LTCO) Ombudsman has been in the forefront in attempting to help residents and families deal with any issues or problems they may be having during this health emergency.

The investigation process

Usually, when we receive a complaint or concern, we make an unannounced visit to the resident in question and obtain consent to do an investigation.

Unfortunately, those visits stopped on March 13 when the federal and state government decided to severely restrict any visits to long-term care facilities, including by state regulators, families and representatives of the Ombudsman program.

The sudden inability to go into the facilities to witness what was happening there–to see firsthand the staffing levels and the physical conditions­­–and to have to rely on phone calls, FaceTime and other technologies to gain insight into what was truly happening, was very jarring and required some out-of-the-box thinking.

Fortunately, the NJ LTCO has highly seasoned and experienced investigators who have deep contacts in, and experience with, long-term care facilities in New Jersey.

In addition, the NJ LTCO has more than 200 highly trained volunteer ombudsmen assigned to an equal number of nursing homes. Under normal circumstances, these volunteers would be in their assigned nursing home every week, speaking with residents and handling their concerns.

So, even though we are not visiting LTC facilities, the NJ LTCO is well-positioned to reach deep into a facility and identify the right person who can solve problems for residents and their families.

Our volunteers continue to keep in contact with residents in nursing homes and have distributed letters reminding residents that the NJ LTCO is still here to assist them with any problems they may be having.

The dramatic increase in calls and cases

Our investigators have never been busier.

During March and April, calls to the NJ LTCO intake line increased by 40 percent, as did the number of cases opened for investigation.

The types of complaints that we have been receiving reflect the deepening crisis in long-term care. Here are some examples:

  • A woman called to tell us that her 56-year-old sister was on a ventilator, fighting for her life after being diagnosed with COVID-19. The long-term care facility in which her sister lived, she alleged, had refused to send her sister to the hospital.
  • A 71-year-old, bed-bound resident called the NJ LTCO to complain that she was not receiving her medication and that she hadn’t been changed–and was sitting in her own urine for more than 24 hours.
  • A nurse called to tell us that she was the only one who showed up to care for more than 60 residents during an evening shift in a nursing home.
  • A man called to see if we could find his mother, who was COVID-19-positive, had a fever and had been hurriedly moved out of her nursing into another one–with no advance notice to the family. He didn’t know if his mother was dead or alive.
  • A family member called to report that he was informed that his father had a fever, that COVID-19 was suspected and that he was fine. He was called 90 minutes later and told that his father had died.
  • Multiple staff members called the NJ LTCO intake line to report that they were not given proper personal protection equipment (PPE) in order to care for residents safely.
  • Dozens of family members called us to state that their loved ones died of COVID-19, alone and without family by their side. Most of these callers alleged care neglect due to poor staffing.

As this crisis unfolds into late spring and early summer, it appears that there is more PPE and more testing available. These are the two things that are absolutely critical to stemming the tide of this horrific virus and getting to a place where our office, state regulators, and families and friends can once again visit long-term care residents.

Stepping up outreach

In the meantime, here at the NJ LTCO, we continue to adapt to this new reality. While we look forward to the day when we can go back into long-term care facilities, we are stepping up our outreach to residents via newsletters, direct phone calls and utilization of tablets and smart phones.

In mid-May, we began to distribute a resident-focused monthly newsletter to residents of long-term care facilities. In the inaugural edition, we remind residents that they have rights and that they can always call us for assistance. In addition, we remind them that most of them will get a $1,200 stimulus payment as a result of the COVID-19-related CARES Act and that this money is theirs-and no one can take it from them.

Conditions at long-term care facilities; hope for the ensuing months

I wish I could say that the tragedy of COVID-19 in our long-term care facilities was totally unforeseeable, but that would not be the whole truth. While the scope and speed at which the COVID-19 tragedy unfolded were certainly new, the conditions in many of our long-term care facilities were ripe to fuel this type of situation.

In the ensuing months, it is my hope that we will see the effects of this terrible virus wane in long-term care facilities. In its wake, I am sure that there will be a clear-eyed assessment of how we, as a society, could have done more to protect vulnerable elderly and disabled people living in residential settings. We have learned much about this virus and the terrible toll it can take in long-term care facilities. My expectation is that we all will apply the lessons we have learned so that we are better prepared for any future outbreaks.

The thousands of souls we have lost and the thousands of vulnerable elderly and disabled people currently living in long-term care facilities deserve at least that much.

For more information on the LTCO, visit nj.gov/ooie/. The LTCO can be reached by calling 1-877-582-6995 or by email at [email protected]co.nj.gov.

Any opinions expressed within guest blogs are those of the author and are not necessarily held by NJ Foundation for Aging.

Caregiving by the Numbers

March 30th, 2020

See resources at the end of this blog, including information for caregiving during COVID-19. 

A Caregiving Report by AARP’s Susan Reinhard and Lynn Friss Feinberg revealed that in 2017, about 41 million family caregivers in the U.S. provided an estimated 34 billion hours of care to an adult with limitations in daily activities. Support included basic functional activities (such as help with eating and bathing), household chores (such as meal preparation and help with shopping), and medical/nursing tasks, to help individuals remain in their homes and communities for as long as possible.

The estimated economic value of their unpaid contributions was approximately $470 billion. By comparison, all out-of-pocket spending on U.S. health care in 2017 was only $366 billion.

Here in the Garden State, nearly 2 million New Jersey residents — this writer included — provide varying degrees of unreimbursed care to family members or friends who are elderly or disabled and limited in their daily activities. Another AARP report noted that the services caregivers provided in the state had an annual value of more than $13 billion.

The prospect that someone will be a caregiver, or potentially need a caregiver, by 2030 is great because the nation’s population is changing and will mark a significant demographic turning point by then, according to the U.S. Census Bureau’s 2017 National Population Projections.

The year 2030 is when all baby boomers will be older than age 65 — meaning that one in every five U.S. residents in 2030 will be of “retirement age.”

In a press release revised in Oct. 2019, Jonathan Vespa, a demographer with the U.S. Census Bureau, said, “The aging of baby boomers means that within just a couple decades, older people are projected to outnumber children for the first time in U.S. history. By 2034, there will be 77.0 million people 65 years and older compared to 76.5 million under the age of 18.”

When it comes to being a caregiver, there appears to be few age boundaries. Of these nearly 41 million family caregivers nationwide, the majority are in their 40s and 50s, AARP reports, but about 1 in 4 is part of the millennial generation.

Conversely, a recent story in the Daily Record of Morris County spotlighted the 100th birthday of Carmela “Millie” Scarnato. A newly minted centenarian, Scarnato is still a caregiver for her son with special needs, who is 57.

COSTS AND CHALLENGES

The work of a caregiver, AARP notes, can often morph into a part-time job or more, and cost caregivers more than $600,000 in lost wages and missed Social Security benefits over a lifetime.

One of the greatest challenges of family caregivers though is training, noted Forbes Senior Contributor Howard Gleckman in his article titled “Compassion isn’t enough for family caregivers. They need training too.” Gleckman contends that family caregivers often provide aid with lots of love and compassion, but zero skills.

“That lack of training makes their lives more difficult and makes it more likely that those they are caring for will fall, get infections, or suffer from dehydration or malnutrition,” Gleckman says in the article. “And as family members increasingly are expected to provide nurse-like wound care or complex medication management, their need for training is even greater.”

Gleckman cites a study published in JAMA Internal Medicine indicating that 93 percent of family members caring for an older adult said they had never been taught how to do this difficult work.

WHAT’S HAPPENING IN TRENTON

In 2018, a bill was signed into law creating the New Jersey Caregiver Task Force to evaluate caregiver support services in the State and provide “recommendations for the improvement and expansion of such services ensuring that New Jersey is doing all it can to support caregivers who provide invaluable services to loved ones and friends.”

The NJ Caregiver Task Force consists of representatives from the public and private sectors.

“Studies show that the emotional and physical health of caregivers often suffers as a result of the stress and physical demands they encounter, particularly when it comes to caring for people with dementia or Alzheimer’s,” said Assemblywoman Vainieri Huttle, a co-sponsor of the bill, in a press release. “This task force will take an honest look at how we can better address these needs.”

The Task Force will:

  • Identify and survey caregivers in the state, in order to develop an aggregate summary of caregiver characteristics, including age, geographic location, the amount of time spent in caregiving activities and acting in the caregiver role.
  • Solicit testimony from caregivers on the nature and type of tasks they perform; the feasibility of task delegation; the availability and sufficiency of caregiver training programs, financial support services.
  • Submit a report to the Governor and the Legislature detailing its findings and providing recommendations for legislation, or for regulatory or programmatic changes.

“Caregivers devote their lives to their loved ones, often missing work and missing out on wages, and this is going to become more of a concern in the coming years with an aging population,” noted Task Force member and Commissioner, New Jersey Department of Human Services, Carole Johnson.

HELPFUL INFORMATION

If you’re a caregiver, or will soon become one, consider the following:

  1. Hire an elder-care attorney to draw up financial and medical power of attorney documents, plus determine if a loved one is eligible for other services. Watch episode 86 of NJFA’s “Aging Insights” TV program, “The Three Most Important Documents,” at https://youtu.be/axmetvdDQQ8
  2. Learn about expanded paid time off for caregivers. Watch “Take the Time You Need,” episode 95 of NJFA’s “Aging Insights,” at https://youtu.be/gJrnqz_Mehc
  3. View “Giving and Getting Support, episode 99 of “Aging Insights,” which is devoted to caregiving, at https://youtu.be/9T5ObyIkdRQ
  4. Visit NJ’s county-by-county Aging & Disability Resource Connection/Area Agency on Aging (ADRC/AAA) for resources  https://www.state.nj.us/humanservices/doas/home/saaaa.html
  5. Caring for a veteran? Check out resources available through Veterans Affairs at https://www.nj.gov/military/veterans/benefits-resources/
  6. Become familiar with the CARE (Caregiver Advise Record Enable) Act, which was enacted to help the growing number of family caregivers know what to do/how to do it after a parent or older loved one’s hospitalization. [Download a wallet card at https://www.aarp.org/caregiving/local/info-2017/care-act-aarp-wallet-card.html]
  7. Social workers and nurses at hospitals and medical practices who are treating your loved one can suggest appropriate local services.
  8. Visit the AARP’s caregiving resource area https://www.aarp.org/caregiving/
  9. Visit the Family Caregiver Alliance for NJ https://www.caregiver.org/state-list-views?field_state_tid=89
  10. Read more about caregiver burnout and ideas to help combat it https://www.aginginplace.org/caregiver-burnout/

Here are resources specific to caregiving and the coronavirus:

https://www.johnahartford.org/dissemination-center/view/coronavirus-disease-covid-19-resources-for-older-adults-family-caregivers-and-health-care-providers

https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/coronavirus-caregiving-for-the-elderly

https://www.ncoa.org/covid-19/covid-19-resources-for-older-adults/

REFERENCES

Links to references are in the blog copy.

by Sue Burghard Brooks, Communications Manager for the New Jersey Foundation for Aging. A published author, Sue is also a caregiver for her Dad, who is a nonagenarian veteran and a Mason.

 

 

Testimony given by NJFA Executive Director Melissa Chalker to the inaugural meeting of the Assembly Senior Services Committee, 1/27/2020

February 6th, 2020

 

The New Jersey Foundation for Aging’s Executive Director, Melissa Chalker, was invited to testify at the inaugural meeting of the Assembly Senior Services Committee on January 27, 2020. The committee includes Chair Valerie Vainieri Huttle, Vice-Chair Shanique Speight and members BettyLou DeCroce, DiAnne C. Gove, Angela V. McKnight and P. Christopher Tully. This was Melissa’s testimony. To read more about the meeting, see the NJ Spotlight coverage here.

“Good afternoon, Assemblywoman Vainieri Huttle and members of the Assembly Senior Services Committee. Thank you for this opportunity to speak with you today. I am Melissa Chalker and I’m the Executive Director of the nonprofit New Jersey Foundation for Aging (NJFA).

NJFA was founded in 1998 by four County Office on Aging Directors. They wanted to create a statewide organization that would address public policy issues related to the changing and diverse needs of our growing aging population. Since then, we have worked with a wide variety of partner organizations, as well as state government officials, to enable older adults to live with independence and dignity in their communities.

Today, I would like to tell you about NJFA’s advocacy priorities and present some current data related to older adults.

FINANCIAL INSECURITIES

NJFA developed the state’s first Elder Index Report — a cost-of-living table — in 2009. In 2015, the NJ State Legislature passed a bill that mandated the use and updating of the report by the Dept. of Human Services — specifically the Div. of Aging Services, which I am sure my friends from the Division can tell you more about.

From the first report in 2009, through the national database update that was unveiled last week, this Elder Index data allows us to look at the cost of living for seniors in NJ, determine how many fall below the Elder Index Benchmark ($29,616 a year for a single elder renter) and focus on how they can be supported by public benefits and other programs to fill the gap.

Because of the Elder Index research, we know that 8% of New Jersey’s older adults live at or below the federal poverty level. Those seniors are among our most vulnerable — both financially and medically.

Additionally, Social Security is the only source of income for 30% of older adults in New Jersey. The average annual Social Security benefit for a retired elder in NJ is $18,065. We know that number is even lower for women, plus there are many other seniors who receive far less than the average benefit. We have received calls and letters from older adults seeking help, stating that they are trying to get by on their monthly Social Security benefit of $700. After paying their rent and health care premiums, they are often left with $100 or less for groceries, co-pays and other expenses.

In addition to those seniors living below the federal poverty level, there are older adults who may be above that benchmark, but still struggling to meet all their basic needs. In fact, the most recent NJ Elder Economic Security Index indicates that more than half (54%) of New Jersey’s seniors do not have the annual income needed to provide for their basic needs. This is what is referred to as New Jersey’s statewide Elder Economic Insecurity Rate (EEIR). These are the older adults that we refer to as being “in the gap.” That gap is having income too high to qualify for government programs, but too low to adequately cover basic expenses.

The Elder Index statistics influence much of NJFA’s advocacy work, including, but not limited to, affordable and accessible homes, nutrition and food security, and access to quality healthcare. However, this data should serve as a reminder that the state must also consider older adults when discussing tax relief programs — including property taxes — and review the structure of retirement income taxes, compared to that of neighboring states.

HOUSING INSECURITIES

Ensuring that New Jersey’s aging population has safe and affordable housing is also imperative. Two years ago, we convened a stakeholder group, which developed a policy recommendation report. I have provided a copy for each of you to review [see the report here].

In the 10 recommendations listed, you will see that we are suggesting increases in vouchers and units for older adults within existing housing programs. We also identified ways to streamline the process and implement incentives to provide more housing to older adults that is safe, affordable and accessible.

When we consider the housing needs of seniors, we must consider every senior — there is no one-size-fits-all for older adults. When implementing policies and programs, we need to recognize seniors with chronic health conditions and those who are facing economic insecurity.

Additionally, there are middle-income seniors who struggle to find appropriate, accessible places to live in their communities of choice, and worry about being able to afford all their retirement expenses — including the potential need for long-term care services, which can add up to $50,000 a year to their costs depending on the level of care. Along with our partners, we’re engaged in discourse about age-friendly communities, particularly how social and wellness services can better be incorporated.

FOOD INSECURITIES

Much like anyone in any age category, the nutritional needs of seniors are a priority. Protecting the SNAP [Supplemental Nutrition Assistance Program] program from Federal cuts would ensure that those who rely on the program will still be able to access healthy foods. What we have learned from partners doing outreach with seniors is that often an older adult on SNAP is better able to follow a doctor’s dietary guidelines because of this benefit.

One area of need, though, is finding and educating seniors who do not know about the SNAP program, or those who fear the stigma of public benefits and the stories about the difficulty in applying for the program. My friends at the Division of Aging Services can confirm that there has been under enrollment of seniors in SNAP for quite some time.

An improvement to SNAP program would be a Standardized Medical Deduction for seniors applying for SNAP, which would make it easier for seniors to take advantage of the medical deduction provision. Having one max deduction amount that all seniors could utilize would make it easier for them to apply for, and receive, SNAP.

FAMILY CAREGIVERS

The issues and struggles surrounding informal, unpaid family caregivers have been well documented. Family members provide most of the care for older adults and individuals with disabilities here in NJ. Our healthcare system will need to respond to the continued growth of the 65+ demographic over the next decade. Relying on family caregivers to fulfill all facets of care is unrealistic; but we know that it will become a necessity for many. Therefore, we need to not only look at policy changes to the healthcare system, but also the support of caregivers.

There is an urgent need to bring greater public awareness to this issue and to advocate for caregivers. Expanding access to home-based, long-term care services for NJ’s older adults would provide some relief in that area. The state has done a great job increasing the number of people who receive home- and community-based services through the state’s MLTSS [Managed Long Term Services and Supports] program.

Therefore, NJFA continues to participate in dialogue around the need for a policy or program to address those who fall in the gap between eligibility for Medicaid and the ability to pay privately for care.

In conclusion, there is no single answer to “how do we better serve older adults in NJ,” because there isn’t just one issue. Across our nation (and even the world), longevity is increasing, which is good news. However, that means that society’s ageist views, which place barriers on the road to aging well, need to be dismantled now. Investing dollars into housing, nutrition and healthcare services (including those that benefit caregivers) will ensure that everyone in NJ has the opportunity to live a long and healthy life.

Thank you for your time.”

Aging and happiness

January 3rd, 2020

(With apologies to beloved game show host Alex Trebek.) Happy New Year! Let’s start 2020 with a “Jeopardy”-esque answer, and you provide the question.

Answer: “According to multiple research studies, our happiest days occur at this age in life.”

Cue the theme music…

OK, time’s up. The correct question? “What is old age?”

Surprised? You’re not alone. Gerontologists and sociologists call this “the paradox of aging.”

Old age, it appears, is often a time defined by peace, gratitude and fulfillment — and not by sorrow, dread and regret, notes author and psychologist Alan D. Castel from the University of California (UC), Los Angeles. In his book Better With Age: The Psychology of Successful Aging, Castel argues that in some ways, our youth and middle years are somewhat of a training period for the unanticipated pleasure of being an older adult.

A landmark longitudinal study across the adult life span — the first of its kind — also reveals that negative emotions, such as anger, anxiety, stress, and frustration, decrease steadily with age, and positive emotions, such as excitement, pride, calm, and elation, remain stable across the life span.

Researchers Susan Charles, professor and chair of psychological science at UC, Irvine, and Margaret Gatz, professor of psychology at University of Southern California (USC), Dornsife, discovered that only the very oldest group they studied registered a slight decline in positive emotions.

When award-winning New York Times reporter John Leland was 55, he began following the lives of six people over age 85, expecting to write about the difficulties associated with growing old. He was also the main caregiver for his octogenarian mother at that time.

That experience changed his understanding of old age, he said, and inspired his book, Happiness is a Choice You Make: Lessons From a Year Among the Oldest Old, a New York Times bestseller.

“When the elders described their lives, they focused not on their declining abilities, but on things they could still do and found rewarding,” Leland wrote in a 2018 New York Times article titled “Want to Be Happy? Think Like an Old Person.”

So why is there still disbelief about aging and happiness?

Researcher Charles admits that when you ask people what they think 80 looks like, they’re likely envisioning dementia and nursing homes.

USC Dornsife’s Norbert Schwarz, provost professor of psychology and marketing, concurs. He says that when we’re evaluating our lives, we tend to focus on the negatives, such as increased frailty, declining independence and health, the loss of loved ones, and eventually, our own demise.

Another common misconception about aging, adds Schwarz, is that increasing awareness of mortality causes unhappiness.

On the contrary. Schwarz states that based on research, activity is tightly tied to the reason why people grow happier as they age. He notes that they may have had jobs they didn’t like and when they retire, they have better days.  Seniors are then spending less time on activities that aren’t very enjoyable and cause higher levels of stress. Additionally, they have more time to spend with others, and “all of that lifts our spirits,” he says.

Leland had a similar experience. “Older people report higher levels of contentment or well-being than teenagers and young adults,” he noted in the “Want to Be Happy? Think Like an Old Person” article he penned.

“The six elders put faces on this statistic,” Leland wrote. “If they were not always gleeful, they were resilient and not paralyzed by the challenges that came their way. All had known loss and survived. None went to a job he did not like, coveted stuff she could not afford, brooded over a slight on the subway or lost sleep over events in the distant future.”

Perhaps now, some won’t look towards the future with a sense of fear and dread — they’ll “think like an old person” and be happy instead!

By NJFA Communications Manager Sue Burghard Brooks

References:

https://dornsife.usc.edu/news/stories/3117/people-get-happier-as-they-age/

https://time.com/5363067/aging-happiness-old-age-psychology/

https://www.nytimes.com/2017/12/29/nyregion/want-to-be-happy-think-like-an-old-person.html

https://www.npr.org/2018/01/24/580212243/reporter-shares-life-lessons-from-a-year-with-the-oldest-old

https://lithub.com/how-the-oldest-of-the-old-taught-me-to-choose-happiness/

Better With Age: The Psychology of Successful Aging and Happiness is a Choice You Make: Lessons From a Year Among the Oldest Old are available through smile.amazon.com. Please select New Jersey Foundation for Aging, Inc. as your charity of choice on smile.amazon.com. Then, every time you make a purchase on the site, AmazonSmile will donate to us, at no cost to you! Thank you!

 

Aging Insights #Roadto100

November 7th, 2019

As we begin to think about the start of a new year, we also get ready to show the 100th episode of Aging Insights! In honor of this major achievement, we thought we’d take a few moments to familiarize you with Aging Insights (if you’re not already), and tell you a little about what’s in store for Aging Insights this year and beyond. 

NJFA’s mission is to provide leadership in public policy and education to enable New Jersey older adults to live with independence and dignity in their communities. And one of our primary goals is to be an information source for older adults and those who care for them to gather information that helps them live independently.

Now that you know that, you might be asking how does NJFA accomplish that?

Well, for starters, right here at this blog and on our website where we provide informative articles and links to resources.

We also aim to connect you to programs, services and trending issues through our TV program, Aging Insights. Never heard of it? Hop on over to NJFA’s YouTube channel (after you finish reading this blog of course!). The show can also be seen on over 70 municipal based TV stations across our state, if your town isn’t airing the show- call and ask them about it.

Aging Insights began as Aging Today and was originally a production of the Middlesex County Department of Aging and was hosted by their former Executive Director Peg Chester (Peg is also a Founding Trustee of NJFA).  NJFA took over production of the show in October 2011 and renamed it Aging Insights. Expanding the focus to a statewide audience.

We are about to celebrate an amazing milestone.  Aging Insights’ 100th episode will air in January of 2020. The episode will feature clips from previous shows and commentary from staff, board members and partners. We hope you’ll join us in celebrating, but also stick around for more- as we are not done yet! We will continue to produce Aging Insights and bring you, our audience more interviews with leaders across our state, more important updates on Medicare, more details about helpful programs like SNAP, PAAD and more. So, won’t you keep watching?

Finally, we want to remind you that Aging Insights is brought to you by sponsorships and donations. If you are able to donate, please visit our website or mail your gift to NJFA 145 W. Hanover St. Trenton, NJ 08618.