The pandemic has had a harsh impact on our ability to spend time with older relatives, such as grandparents. Conversely, it has awakened us to just how much we cherish those intergenerational ties.
Sunday, Sept. 12 is National Grandparents Day and we wondered about its history. There appear to be three people behind the movement.
According to a recent online Better Homes & Gardens article by Emily VanSchmus, in 1969, 9-year-old Russell Capper penned a letter to President Nixon requesting that a day be dedicated to grandparents — much like the national celebrations of Mother’s Day and Father’s Day. Capper received a letter from Nixon’s secretary indicating that the president liked the idea but couldn’t declare a holiday without a resolution from Congress…
Generations United’s website at grandparentsday.org states that National Grandparents Day is “rooted in the innovative work of two committed and passionate pioneers: Jacob Reingold and Marian McQuade.”
Reingold, who served as Executive Vice President of the Hebrew Home at Riverdale in the Bronx from 1958 to 1995, attended the 1961 White House Conference on Aging. Accordingly, he was so inspired by a speech concerning the “new image of the aged” that he “focused on recognizing the role of millions of older Americans who are grandparents.” That same year, on September 16, the first day specifically honoring grandparents was held at the Hebrew Home. Two years later, it became an official holiday in the borough of the Bronx.
In 1970, West Virginian Marian McQuade, who served on the West Virginia Commission on Aging and the Nursing Home Licensing Board, began campaigning to create a special day of recognition for grandparents. She said she wanted to educate youth about the importance of seniors and the contributions they have made throughout history. She urged the younger generation to “adopt” a grandparent and “learn more about their lives, challenges, and desires for the future.”
She reached out to civic, business, faith and political leaders and began a statewide campaign for Grandparents Day in West Virginia. In 1973, the first Grandparents Day was proclaimed there by Governor Arch Moore.
Reingold and McQuade’s work culminated in 1978 (nine years after Capper’s letter) when Congress passed legislation proclaiming the first Sunday after Labor Day as National Grandparents Day, and President Jimmy Carter signed a presidential proclamation.
(An interesting side note: According to legacyproject.org, McQuade and her husband, Joseph, had 15 children, 43 grandchildren, 10 great-grandchildren, and one great-great-grandchild!)
Wishing those who celebrate a safe, memorable day!
Guest blog by Charles Clarkson, Esq., Project Director, Senior Medicare Patrol of New Jersey
On March 13, 2020, a national health emergency was declared due to the coronavirus pandemic. After many years of running the Senior Medicare Patrol of New Jersey (SMP), I knew it was only a matter of time before we starting seeing SCAMS related to the health emergency. Fraudsters are always looking for ways to scam people, and the COVID-19 public health emergency has been no exception. Initially, fraudsters promoted false cures, sold phony personal protective equipment, given people illegitimate COVID tests and billed Medicare for sham tests and treatments. Now, they are targeting vaccines.
The goals of the fraudsters are very simple: to obtain your information, which they can use to steal your personal and/or medical identity, or to outright steal your money. The SMP has seen a number of vaccine scams. The more you know about these scams the more likely it is you will not fall victim to them.
Head-of-the-line Vaccine Scams
Scammers call and say you can get your vaccine early by providing your Medicare number or other personal information. They may ask for payment upfront and/or insurance information in order to be placed on a priority waiting list for a vaccine you may never receive.
Don’t fall for it. You cannot pay to get in line for a vaccine.
Survey Vaccine Scams
You have gotten your vaccine. You then get an email asking you to complete a health survey. It looks legitimate and has logos and telephone numbers that appear to be genuine. You want to be helpful because you are grateful you were able to get the vaccine. Some of these surveys are also offering money or other incentives to entice you to participate in the survey. The messages may also claim to be urgent, giving a timeframe of expiration to get you to click on their deceptive link to gain personal information.
Don’t fall for it. A vaccine survey offering you an incentive or stating a sense of urgency to complete is a red flag. You should double-check logos and phone numbers and hover over links to see if they are long and suspicious. Don’t click on them.
Vaccine Trial Scams
There are numerous clinical research trials in the race to develop additional COVID-19 vaccines, treatments and cures. Legitimate clinical trials may offer payments to participants under well-defined legal guidelines. However, career criminals know the offer of a paid clinical trial is also an opportunity for financial identity theft.
Scammers are setting up fake websites offering to sell vaccines or vaccine kits. Some are imitating legitimate pharmaceutical manufacturers. In some cases, scammers were asking for payment for vaccines and/or kits via a credit card and sending payment to a specific credit union.
Don’t fall for it. You can’t buy a vaccine.
For More Information About Vaccine Scams Affecting Older Adults
If you think you have been a victim of Medicare fraud, errors, or abuse, contact the Senior Medicare Patrol of New Jersey at 1-732-777-1940 or call our hotline at 1-877-SMP-4359 [1-877-767-4395]. You can also visit our website.
If you have questions related to Medicare billing for COVID-19 vaccines, call 1-800-Medicare [1-800-633-4227] or visit Medicare.
Charles Clarkson, Esq., has been the Project Director of the Senior Medicare Patrol of New Jersey, under the auspices of the Jewish Family Services of Middlesex County, since 2005. The Senior Medicare Patrol of New Jersey is a federally funded program of the U.S. Administration for Community Living and part of the national Senior Medicare Patrol project. There is a Senior Medicare Patrol in every state, including the District of Columbia, Puerto Rico, Guam and the U.S. Virgins Islands. The SMP of New Jersey is responsible for teaching Medicare recipients in the state to become better healthcare consumers. As part of this effort, seniors are provided with information to prevent them from becoming victims of fraud, waste and abuse in the Medicare program. The SMP program also assists beneficiaries in reviewing suspected Medicare fraud and can act as an advocate to assist beneficiaries in fighting Medicare fraud, waste and abuse.
Clarkson is a New York attorney who for many years was Vice President, Deputy Counsel and Corporate Secretary of TLC Beatrice International Holdings, Inc., a multi-billion, international food company.
Excerpt from a speech by Cathy Rowe, DrPH, NJAAW’s new Executive Director
For the last four to five years, I have been deeply involved in age-friendly efforts and communities, and as you have heard in recent weeks — and from some of our [conference] speakers — NJ has committed to becoming an age-friendly state. So, this is an exciting time with a lot of opportunities for all of us in the field of aging to make change where needed, keep all the best of what we do and attempt things we never thought possible before. Now is the time to reach high.
When [NJ’s Director of the Division of Aging Services (DoAS)] Louise Rush told us that 23+% of NJ residents were over age 60, even I was surprised. That’s a lot! It really is a lot.
We have known that the Baby Boomers — the bubble born post-WW2 through 1968 — were the largest population group ever seen in the US, and we have watched for 60 years as they moved through the schools systems, the workforce, started their families and now enter retirement. We built schools for them, colleges, highways and other infrastructure to accommodate this population growth, but we are still not fully prepared for their next stage of life.
Living longer; prepping for the future
Part of this is because when they were born, the average life expectancy was still under 70 years. Now, a child born today may easily see their 100th birthday. That is a big change and a rapid change. Nobody building new schools to accommodate an influx of students in 1960 predicted that those same children would live as long and as well as they are now.
There is a lot to do to prepare. Coming out of COVID, as we rebuild and rebound, we need to keep the lessons we learned and use them for long-term planning, to shape policy and make improvements. No problem that any of us were working on before COVID was solved — most were accentuated. Many new, or rather, unrecognized challenges, were brought to the forefront. And we saw some very creative solutions.
Aging is actually one of the very few things we all have in common. My background is in public health, and I was once asked how public health fit into healthy aging. I responded that healthy aging is the goal of public health. All efforts, research, programs — whether long-term or in quick response to something like a pandemic — are with the goal to help people live long, healthy lives as individuals and as a population.
Not just aging — aging well
So, the question we face is: How do we age well — as individuals, as communities and as a state?
At NJAAW, our role and goals are aligned with our emerging from COVID, the review of the state plan for older adults, and the age-friendly efforts. For 10 years, NJAAW has provided Aging Insights, our award-winning TV program, covering topics that range from health, pandemics to personal finances and just about everything in between. We will continue Aging Insights as well as holding webinars that have provided interactive sessions with colleagues in the field who have found unique ways to approach aging issues in their communities.
Sharing, educating, advocating
And based on the response to our conference’s networking session, and the very active Q&A for presenters, we will offer more opportunities to bring you together for discussions and idea-sharing — one small benefit of the last year is that we can now connect so easily online. Meeting online breaks down the many silos that might block our natural interaction — either by service area or geography.
This is NJ and with over 500 municipalities doing things 500 different ways, it is difficult to see what another community is doing and find ways to implement it for your town or program or agency. We want to help in the sharing of ideas, lessons and successes you all have had in your work.
As NJ works towards becoming an age-friendly state, we will continue the education and advocacy we have done for the past 23 years. We will increase our focus on policy and joining the discussion on age-friendly efforts and the changing demographics of our state.
2030, that looming year we in NJ and many states expect to see the number of 60+ year old residents outnumber the number of students in the classrooms, is not far away.
We will highlight issues of importance with
Academic research and
The experience of local efforts bubbling up and state efforts going down
Where do we meet in the middle?
Your plans for aging well?
I asked Louise Rush and members of the breakout groups what their plans are for aging well — and I am going to keep asking so everybody, start thinking. We are all professionals here, working to help people age well. Whether social worker, housing, health care, recreation, mental health or transportation — we are working now to not only meet needs but to make life better for older New Jerseyans.
But as the flight crew always tells us, “Put on your own oxygen mask first.” Louise Rush said age 0 – 60 goes fast. Age 60 – 90 might slow down for some as you find new time in retirement or might speed up more with additional family, responsibilities, or new careers and activities.
So, do not just think of what needs to be done right now, coming out of COVID, or for the next year, or the next inspection or budget cycle. Think of what YOU can do long term and what WE can do together. What do you personally want for your aging plan? Where do you want to live? Are you financially prepared?
Whether you are new to the field, mid-career or counting the weeks until you retire, envision where and how you want to live and what you will need. Now go do it!
The time is now
The timing for coming out of COVID actually is good, if there could ever be a “good time” or anything good to come from a pandemic. What I mean by that is that we are re-emerging and rebuilding at the exact time other significant changes are about to be made. We are launching statewide efforts to make NJ an age-friendly state just as we are looking at the lessons we learned from COVID.
We saw the devastating fragility of some of our residents who succumbed to this disease. We saw that socioeconomic status, including race and income, had a significant impact on whether someone caught COVID and their ability to recover.
Lessons to be learned
More than ever before, we came further in the last year in recognizing racial inequities, which become more pronounced as we age. We saw some communities embrace technology while others were left further behind. We learned that we do not know enough about our older residents who live in their own homes, who are not in any programs or receiving benefits. What do all of these have in common? They are lessons we learned and data points we can use going forward.
At NJAAW we are going to keep doing what we do well — convening, educating and advocating for older residents. To be as effective as possible at this important time of change, we will examine data more carefully to identify needs and to help shape policy. Look for the data highlights we will include in our newsletter and other communications.
Data = direction
From my time in academia, I learned that it is only with good data that we can help shape good policy and then implement that policy as effectively and efficiently as possible. I am thrilled to have supportive and dedicated people in our statehouse, including Assemblywoman Valerie Vainieri Huttle and the members of the Aging and Senior Services Committee in the Assembly, and Director Rush shaping our next steps in policy and programs. At NJAAW we will share the data and discussions with you and will advocate for policy and the funding necessary to make NJ a state where we can all age well.
About Dr. Rowe
Cathy Rowe, DrPH, was named Executive Director of NJ Advocates for Aging Well in May, 2021. Most recently, Dr. Rowe served as Coordinator for SOMA (South Orange/Maplewood): Two Towns for All Ages, a grant-funded healthy aging initiative in a community with more than 6,000 residents over 60. This cutting-edge collaboration, based on the World Health Organization’s Domains of Healthy Aging, focuses on developing programs to address economic and infrastructure needs for an age-friendly community.
Dr. Rowe has spoken extensively on aging issues at conferences and symposia locally and globally and is an expert in establishing age-friendly communities. In 2020, the National Association of Area Agencies on Aging presented her with a “Best Practices for Socially Engaging Older Adults Award” for the “Repair Café” she established — the first of its kind in NJ. An inter-generational event, the cafe brings together people of all ages and levels of expertise to repair and save treasured items. This also helps to keep such items out of landfills.
Dr. Rowe serves on the steering committee for Impact 100 Essex and is a mentor for the Juvenile Diabetes Research Foundation. Previously, she was a Board member for the Interfaith Hospital Network.
Dr. Rowe earned her DrPH in Health Policy and Management from Columbia University, where she received a Fellowship in Public Policy. Her BA in Economics is from Bates College.
I remember growing up and watching my aging grandmother sit by her living room window, looking out, waiting for nothing in particular to happen – just watching her life pass her by.
That sad, helpless memory always stayed with me, but I was never able to take that sadness and transform it something productive, something that could help people.
Then, 20 years ago, I became involved with the New Jersey Advocates for Aging Well (formerly New Jersey Foundation for Aging).
I joined the organization and first served on an Advisory Council. I then ascended to the Board of Trustees, became its Chair for six years and after my term as Chair expired, I am serving as a Board member again.
Realizing a Wish
I wanted to do something that would make the lives of older adults more meaningful and enriched, so more grandmothers (and grandfathers) would not have to stare out of apartment windows. At the time, then-NJFA, with its emphasis/focus on facilitating seniors to live independently, actively and in their community, gave me the opportunity to realize this wish.
To me, it is the accomplishments and actualization of our vision that is most valuable, as it shows me that we aremaking a difference. Coupled with this is the engagement and dedication of our Board members, who seek to bring those things to life. This is all done in concert with the extremely hard work and devotion of our staff, who move our agenda forward every day. This is why this change in our name, New Jersey Advocates for Aging Well, more accurately describes who we are and what we do.
We tend to think that “getting older” is something that is going to happen in the future. However, it is happening every day, and educating yourself about what you and your loved ones are going to face as you live and age in New Jersey, is critical.
Everyone has a right to age well in the community of their choice. As the New Jersey Advocates for Aging Well, we will continue to provide leadership in public policy and education and work diligently to ensure that all New Jersey residents can do just that.
Included in NJAAW’s name change is an updated logo and this new website, which is a portal packed with reliable information on programs and services available in New Jersey to help you live life to the fullest.
NJAAW will present educational forums and its Annual Conference (online June 3 and 4) offering development opportunities and best practices for professionals entrusted with caring for seniors. Our award-winning monthly TV talk show, “Aging Insights,” features local and national experts and connects seniors, their families and caregivers to community-based services and resources. The program can be viewed on our YouTube channel at youtube.com/user/njaaw/ (where you can subscribe and get notified of upcoming topics), here on our website and more than 70 public-access TV channels throughout our state.
This is an historic moment! Nearly 23 years have passed since we were founded. Now, in 2021, we have a new name, a new logo, a new website. Our mission, however, never changes!
New Jersey Advocates for Aging Well. Join me in celebrating and spreading the word!
Mark Tabakman (MTabakman@foxrothschild.com) is a Partner, Labor & Employment Department, at Fox Rothschild, LLP, where he has practiced since 1987. He is conversant in all aspects of employment law and has expertise in wage-hour and overtime law, including defense of employers in numerous DOL audits and wage lawsuits.
The onset of the pandemic hit NJ’s Foster Grandparent Program hard. The novel coronavirus was particularly concerning to our program because according to public health officials, two of the most vulnerable groups at risk were seniors aged 65 and older and school-age children. Unfortunately, those also happen to be the core segments of our program’s demographics…
New Jersey’s Foster Grandparent Program (NJ/FGP), part of AmeriCorps Seniors, provides low-income senior residents, ages 55 and up, with the opportunity to work one-on-one as mentors and role models to children with special or exceptional needs.
Volunteers, who must be retired and/or receiving Social Security, do this work in classrooms or institutionalized settings throughout the state. Income eligibility (200% under the federal poverty line), criminal history and background checks are required for volunteers to serve, and they receive a tax-free stipend of $3 an hour. Travel reimbursement, free breakfast and lunch provisions, supplemental accident and liability insurance and an annual award-recognition event are some of the program benefits.
Foster Grandparents support schools and community needs related to children where traditional services are not available, such as encouraging socialization, modeling appropriate behaviors and skills, assisting in the development of motor and learning skills, tutoring, listening, talking, singing, walking and reading.
In March, the new reality of pandemic-related lockdowns, social distancing and limits on travel and gatherings were put in place as safety measures by Gov. Murphy’s executive orders. Such measures kept our Foster Grandparent volunteers at home and off duty.
Major fears for our volunteers escalated because many were afraid or not able to leave their homes, even to shop for food. And a few of our volunteers suffer from food insecurities and isolation.
HELP AND KEEPING CONNECTED
My colleagues and I made weekly phone checks to our volunteers, home visits to drop off food to those in need and ran errands as a courtesy to those who expressed a need. We also completed monthly conference calls to keep all of our volunteers connected to the program and each other.
Fortunately, the national office of AmeriCorps Seniors has made it possible to continue monthly stipends during this period by providing a COVID-19 allowance until December 31, 2020. Many of our volunteers have come to rely on these stipends.
BACK TO SERVICE
Now that some of the Governor’s executive orders, COVID curfews and closure restrictions are lifting, and some schools have re-opened, we are working to transition our volunteers back into service. A number of our volunteers remain concerned about the potential risks that COVID-19 may have on their health, and we’re concerned for them as well. Nonetheless, the majority cannot wait to go back to their sites. They love and miss working with the children.
Our pathway back to service includes practicing social distancing, using required personal protective equipment (PPE) and taking on new permissible service roles.
COVID-19 thrusted our senior volunteers into the virtual world. Many of our older adults were not very “tech-savvy” and nervous about all things web-related. Right away, we saw first-hand how Foster Grandparents were deeply affected by the digital divide. Our volunteers not only lacked the knowledge of how to use technology, but they also lacked the equipment and access to the internet.
As a team, we developed a few solutions to address this issue, starting with training. We now have a mandatory “Computing 101” course that includes setting up WiFi, how to log in and how to use Zoom. We have also teamed up with CyberSeniors, a national organization whose mission is to bridge the digital divide, and Rutgers Extension to provide online training content and services.
Besides virtual engagement with the students during the coronavirus, our volunteers have been packing and delivering lunches to students in local NJ communities and serving as School Greeters to walk students to their classrooms, because parents are no longer allowed in school buildings. Those volunteers who are more tech-savvy are helping as in-person guides and assistants to students learning virtually at home or in the classroom.
Foster Grandparents join the program to give back to communities and offer their time, wisdom and unique skills. We are so pleased that NJ FGP volunteers are able to continue to serve children and their families throughout this pandemic.
It is quite rewarding to see our volunteers in their “second act” of life learning new skills and becoming essential resources. “Volunteers add positivity, care, and warmth that the children in our center need to thrive,” Program Director Pat Staltari says. “The volunteers give that extra love and attention that many of our students are not receiving at home. We love our grannies!”
When you volunteer, you’re not just helping others — you’re also helping yourself. Volunteering leads to new discoveries and new friends. Additionally, in a two-year AmeriCorps Seniors study completed in 2018, 85% of participants said that volunteering helped stabilize or improve their health. Plus, 88% of the volunteers said that they felt less isolated and now have a new purpose in life. Other research shows that volunteering helps you live longer and promotes a positive outlook on life. Join us!
For more information on NJ’s Foster Grandparent Program, and to meet guest blogger Lauren Lamin and Grandma LuLu, one of her volunteers, watch Aging Insights, Episode 110 on NJFA’s YouTube channel.
Lauren Lamin (left) is a Program Coordinator with the New Jersey Foster Grandparent Program (NJ/FGP), an AmeriCorps Seniors program. NJ/FGP is sponsored by NJ Department of State, Governor’s Office of Volunteerism (GOV). Donna Teel is NJ/FGP Director and Rowena Madden is Executive Director GOV. For more information, visit https://nationalservice.gov/programs/senior-corps, follow @VolunteerNJ on Facebook, and email Lauren at firstname.lastname@example.org.
Many families and loved ones across the nation are held together by the support of their caregivers. Day in and day out, these brave individuals are the ones making the sacrifice to ensure the well-being of so many.
According to “2020 Report: Caregiving in the U.S.,” a May 2020 research report from AARP, there are an estimated 63 million caregivers in the United States, and this community continues to grow. With aging generations needing more to support their healthcare, many people are finding themselves becoming caregivers.
An intimidating role to step into, being a caregiver is no easy task – especially during a global pandemic. There are many struggles and challenges to face. However, as a nation and as a caregiving community, we are united in resilience to meet them head-on.
Over the years, the caregiving community, healthcare community, government and so many others have come together to bring resources to our bravest individuals – our caregivers. Whether in our homes or on our frontlines, there is always help. Let us show you.
Getting Started The caregiver role can take many shapes. It could be someone caring for an aging parent, a loved one with a disability or even a young adult caring for a relative. You could be getting groceries, helping with physical therapy, arranging appointments, administering prescriptions/medical care and much more. No matter what role a caregiver has, there are several first steps that every caregiver should take:
• Get a solid diagnosis: Having an accurate distinction of the disability or medical condition your loved one is facing will help you become a better caregiver. You will have more of an understanding of what you can do and what you should research to provide the best standard of care.
• Research: The more you know about the condition/disability, the better. This will prepare you for the care you can provide and allow you to have deeper communication with medical staff. Additionally, you can find and connect with caregiving resources that are more central to the needs you find (see below).
• Talk with Family/Loved Ones: It is important to include those who are relevant to your loved one throughout this process. The treatment your loved one receives and how the process is handled can become very personal, and tough decisions may need to be made. Having open and honest discussions can create a better circle of support and understanding as you all go through this together.
• Finances: There should be clear outlines of a financial plan to care for your loved one. Again, this involves talking with those who are relevant to the person needing care, as well as medical providers and insurance. Creating a well-thought-out budget will help you focus on the more important parts of being a caregiver, which will minimize stress.
• Complete Legal Paperwork: This might include a Power of Attorney, Advance Medical Directives, POLST form, wills, etc. Having these documents completed ahead of time will provide answers to questions down the road if the condition worsens, and alleviate stress. It is always better to be prepared, even if these are difficult conversations to have.
Connect with your Local Community There are 63 million caregivers nationwide, and you are never far from help. All across the country, there are people just like you who have come together to create resources for the community. Doing some research to find out what is available in your area can be extremely helpful when it comes to answering questions, finding the best care or even just finding someone to listen to. Locating your closest caregiving coalition, such as Caregivers of New Jersey, can provide you with a more personal level of support and resources.
Caring for YOU Caring for someone 24/7 is no easy job. When you spend so much time caring for others, you may forget to take care of the most important part of caregiving – YOU!
According to a 2020 AARP survey, 26% percent of family caregivers described their situation as “highly stressful.” High levels of stress can take an immense toll on personal health. As AARP notes in their updated May 2020 article, titled “Caregiver Burnout: Steps for Coping with Stress,” 4 in 10 caregivers experience depression, mood swings and resentment due to their position.
There are many resources that can help you avoid this burnout. One of the main things caregivers need is simply time away. This is where respite care steps in. Respite care is short-term or temporary substitute care to relieve the primary caregiver. This can be found through Caregivers of New Jersey, some senior residential facilities, Veteran’s associations, local adult daycares, your local Area Agency on Aging, or even just family and friends.
Do not be afraid to ask for help! The help is there; you just need to speak up for yourself. You cannot be a good caregiver if you cannot care for yourself first. Practicing this “put-your-oxygen-mask-on-first” metaphor is not only better for you but better for your loved one.
Caregivers of New Jersey (CNJ) (njcaregivers.org) is dedicated to providing a central point of contact on caregiving issues, resulting in more effective information dissemination, increased support, awareness and advocacy. CNJ offers a wide array of resources for the caregiving community in counties across NJ, including support coordination, coalitions, and advocacy, as well as training and events. CNJ always puts the caregiver’s best interest at the heart of everything we do.
Caregivers of New Jersey was formed in response to the growing number of caregivers within the state. With more than 1.3 million caregivers in the state, CNJ will work to shed light on the mounting needs of caregivers and the increased need for support.
You – or someone you care about – are older, and having trouble reading print. The simple act of scanning a printed page visually is now laborious and slow-going. It’s time to get that checked out with the eye doctor.
After running some tests, the doctor’s declaration is all-too-familiar and goes something like this: “You have age-related macular degeneration, which is the #1 cause of vision loss in people over 60 in the U.S. THERE’S NOTHING I CAN DO. I AM SORRY.”
Your heart sinks, the floor figuratively falls out from beneath you. Rage, sorrow, grief…all those stages described by Kubler-Ross run through your mind, seemingly at once.
Blindness is one of the lowest-incidence disabilities in the general population, so it’s likely you may not know or have never met a blind person. That doctor must be right; there’s no magic pill or surgery to fix you. Depending on the kind of eye condition you have there may be vitamin therapy or periodic injections into the eye to stave off the loss of more vision. It’s likely, though, that what you have lost will remain so.
Before we continue here, a disclaimer: I am not a medical professional and this blog is not intended to dispense medical advice. Know, however, that I have been part of the scenario just described and have personally spent too many years being angry at my diagnosis of juvenile macular degeneration. My hope is that my experience may save you lots of time in the adjustment process. And while you might have been told there is nothing to be done, that is not entirely true.
There are two commonly-held ways that disability (such as blindness) is perceived. One is the medical model: Your vision is diminishing and that eye doc cannot bring it back. That may be the case. Therefore, in some circles, you and your condition represent failure to a medical professional who has been trained to “fix” what is “wrong” with patients. Your eye condition cannot be brought back to 20/20 or whatever your best vision was. So, in a matter of speaking, there is, technically, nothing that medically or surgically can be done.
There is another way, however, that disability is viewed by those of us who have one (or more). Having a disability is just another way to be – a part of the grand spectrum of human diversity. And a disability needs to be accommodated so that a full life can be had, if that is what the person with a disability wants. Many laws guarantee this, including the 1991 Americans with Disabilities Act, granting equal access to public places, documents and the like as a civil right.
Yes, You Can…
After your diagnosis, the next step is YOUR choice. You CAN have a great life, continue many of the activities that brought you joy and satisfaction before your diagnosis. Your part is the willingness to try a new way to achieve the same ends.
For example, you enjoy reading the daily paper, adore certain magazines and relish best-sellers. What now? You can’t see the print sufficiently to read it fluently and comfortably. Know that the digital age brings with it opportunities to get the same content by downloading them or playing CD audiobooks and periodicals. You also can use assistive technology – software that magnifies and changes on-screen print fonts and colors or reads the screen content aloud. These are just some of the examples of what is possible. Do you love to hike, take bike trips, ski or travel around the world? I’ve done all of that with my diminishing sight.
Yes, you’re going to need some new skills, tools and techniques, not to mention emotional support from other people who already have or are walking the same path as you.
First, have your doctor tell you if you meet the parameters for “legal blindness” (there is, as far as I know, no illegal blindness!), which is that your best vision, with correction, is 20/200. This means that you see at 20 feet what a person without vision loss sees at 200 feet. (Note that I don’t use the term “normal” here; in my life, normal is just a setting on a washing machine, not a classification of the way anyone sees.)
The other element for the classification of legal blindness is a visual radius of 20 degrees or less. This relates to the radius of what your eye can see.
Most people who meet the criteria for legal blindness do see something. Blindness is a spectrum of the range of one’s functional vision. Only 10 to 15 percent of us blind folks see nothing at all.
NJ Commission for the Blind and Visually Impaired
Legal blindness entitles you to services from your state’s agency dedicated to people who are blind or have low vision. So next, contact the NJ Commission for the Blind and Visually Impaired (CBVI), which serves people throughout the lifespan. There are offices in Newark, Freehold and Cherry Hill. Their website is www.state.nj.us/humanservices/cbvi/. Call them at 973-648-3333 or toll-free at 1-877-685-8878 and arrange for what is known as an “intake interview.” A caseworker will collect the necessary information and determine whether you need training to continue a job you felt you had to leave because of vision loss, or perhaps you need training for a whole new career, or maybe how to live the life you want.
Have no second thoughts about requesting services from CBVI – you pay taxes and this service is absolutely there for us. Once you become a client, you can get aids and appliances of all sorts, FOR FREE, to make your life easier. A rehabilitation teacher may even come to your home (once the pandemic is over) to help label your stove thermostat, washing machine and the like to make them simpler to use by touch rather than sight.
There also are support groups around the state for people experiencing vision loss. Find one local to you by contacting Susan Vanino, the social worker at CBVI who coordinates the program, at 973-648-2821. You can also email email@example.com.
Support groups can be so helpful. Their members also are experiencing vision loss and some of the best tricks of the trade, so to speak, come from others who are a few steps ahead on the path. (Many groups continue to meet by conference call, Zoom or similar platforms to keep everyone safe and healthy.)
National Federation of the Blind of NJ
One of the best resources available is the National Federation of the Blind of New Jersey (NFBNJ), part of the National Federation of the Blind based in Baltimore. Check them out at www.nfbnj.org. I proudly serve on their Board. Be sure to look at the Senior Division at www.nfbnj.org/chapters-and-divisions/seniors/. This group meets by phone at 7 p.m. on the third Monday of every month. Annual dues are $5.
The 2020 NFBNJ State Convention, taking place Nov. 18 to 21, is virtual this year, and I highly recommend it. It’s free but you must register in advance at www.nfbnj.org/state-convention/. You’ll hear from engaging and informative speakers and learn about the latest in technology, including Smartphones that read the screen content aloud, dial the phone by voice and even coach you on taking a well-framed photo with its camera.
This brief blog easily could become a book so I will stop here. Remember, whether you are diagnosed with macular degeneration or a similar cause of vision loss, the choice of how you will respond is up to you. Be willing to achieve the same ends by using different means. It really works!
I’m happy to answer any questions or receive your comments about this blog. Please leave them here or if you’d prefer, email them to NJFA Communications Manager Sue Brooks at firstname.lastname@example.org. Include your contact information and I’ll reply.
Annemarie Cooke began losing central vision in early adulthood. She has Stargart’s Maculopathy, a congenital form of macular degeneration. A graduate of Douglass College of Rutgers University, she’s a former award-winning investigative and feature reporter for the Daily Home News (now the Home News Tribune). She later joined Recording for the Blind & Dyslexic (now Learning Ally), where her advocacy work often took her to Washington, D.C. She notes that the advances in assistive technology, combined with the wisdom and fellowship found in several support groups and the National Federation of the Blind of New Jersey, have helped her grow into a confident mentor in a state transition program for blind and visually impaired NJ high school students. Annemarie and her husband are semi-retired and live in a 55+ community in Burlington County, NJ, where she leads a support group for seniors with vision loss.
This article is one in a series of stories about how people across the country are using the Elder Index to understand the true cost of living for older adults and its economic implications. If you know someone who would like to receive information about these stories, send us a note at email@example.com.
Late this spring, New Jersey Gov. Phil Murphy faced a big problem that was all too familiar to other governors across America. The staggering economic impact of the COVID-19 pandemic had created a state budget crisis, with unemployment soaring and new annual revenue projections falling billions of dollars short.
Murphy approached the problem by moving back the start of New Jersey’s next fiscal year from July to October and passing a three-month stop-gap budget to tide the state over. Included in the short-term budget: Cuts to two important property tax-relief programs that help older adults in New Jersey afford to remain in their homes.
This was no small detail. New Jersey homeowners pay the nation’s highest property tax rates, about twice the U.S. average. Nearly 580,000 homeowners benefitted from one of the programs under the axe and 158,000 others took advantage of the other. Both programs primarily benefitted older homeowners and the combined impact of the cuts was expected to exceed $480 million.
Melissa Chalker, executive director of the New Jersey Foundation for Aging, understood all that. Along with AARP New Jersey and other advocates, Chalker immediately launched a campaign to convince the governor and state legislators to restore the critical programs. One of her key tools in advocacy calls and letters: The Elder Index.
“All of these communications would reference the Elder Index,” said Chalker. “It not only allowed us to tell policymakers that 54 percent of older adults in New Jersey have difficulty making ends meet, but a recent related report showed how effective one property tax-relief program in particular was in reducing the economic security gap facing older adults in the state.”
The index, developed and managed at the University of Massachusetts Boston, is a free online tool that provides realistic and detailed cost of living data for older adults living in every U.S. county. Combined with state-level income data, the index can also determine the percentage of older adults who have insufficient income to meet the cost of living in their states. UMass Boston’s Gerontology Institute published a report on state-by-state elder economic security last November.
The New Jersey Foundation for Aging and the Gerontology Institute have been working together for years to provide state and local leaders with clear data about the economic circumstances of their older citizens. The foundation helped promote legislation enacted in 2015 that requires an elder economic security report based on Elder Index data be maintained by state government as a public resource.
A companion report, prepared with Rutgers University and a consultant, analyzes racial and ethnic details in the data, as well other factors including the effectiveness of individual state programs in reducing elder economic insecurity.
“We want to constantly use the Elder Index to remind policymakers and people in state government that there is a need here with older adults,” said Chalker. “Whether it’s the SNAP nutrition program, housing or prescription drug prices, we’ve been able to send letters and testify at the statehouse on those issues stating the Elder Index data.
“We’ve also used it to arm our partners, whether they are funders, county office on aging staff or senior center staff to help them meet the needs of older adults in their communities,” she said.
But the foundation had always understood that housing expenses played an outsized role in New Jersey’s elder economic security problem. The online index can help anyone get sense of those dimensions in just a couple of clicks.
Here’s how: Enter New Jersey and national average queries for older couples in good health who own their own home without a mortgage. You’ll find total monthly expenses more than 20 percent higher in New Jersey, compared with the national average. Housing costs, almost double the national average in New Jersey, account for nearly all of the overall difference.
New Jersey Gov. Phil Murphy signs the state’s budget.
Data like that explain why Chalker and other advocates knew how important it was to save New Jersey’s property tax-relief programs. After a burst of calls, letters and op-ed columns, their efforts paid off last month. Murphy signed a new $32.7 billion budget for the remainder of the fiscal year, preserving both property tax relief programs for the future.
“I think the Elder Index was crucial in terms of the effort,” said Chalker. “You can anecdotally say how hard it is for seniors and tell some very compelling stories. But you’ve got to have metrics if you are making the case to policymakers and the elder economic insecurity reports provided what we needed.”
About the Gerontology Institute The Gerontology Institute conducts research and policy analysis in the field of aging, and offers lifelong learning and pension protection services to older adults. The institute’s priorities include income security, long-term service and supports, healthy aging, age-friendly communities and social and demographic research on aging.
Mornings on the golf course. Weekends with the grandkids. Vacations to dreamed-of destinations.
These are the visions of “successful aging” in many people’s minds, reflections of the one-dimensional view of growing old that is all too pervasive in our culture.
Not that those pretty images of retirement life aren’t experiences that people should desire. But without taking a deeper look at all the potential challenges and opportunities of growing older, many individuals will fail to anticipate later-in-life needs and desires.
In its advocacy work, the New Jersey Foundation for Aging routinely seeks to widen the lens that society trains on the lives and livelihoods of older adults, and the organization’s annual conference this year succeeded in doing just that.
Titled “2020 Vision for Successful Aging,” the conference, held virtually on Aug. 13 and 14, featured presentations on how aging intersects with a range of other policy issues from climate change to LGBTQ rights to immigration policies.
The conference also sought to open attendees’ eyes to the ways in which ageism is so widely normalized and internalized that it can often lead to us making uninformed individual and societal decisions that limit older adults’ choices in later years.
In a keynote address, Cynthia Hutchins, director of financial gerontology for Bank of America Merrill, said people shouldn’t avoid thinking about uncomfortable questions such as how long they might live and whether they will need some form of caregiving at some point.
“Longevity has changed the way we plan for our health and our health-care needs,” Hutchins said.
Previous generations didn’t envision living decades in retirement, but Baby Boomers and the generations that come after them will need to have a better understanding of such things as the limits of Medicare, the different options for long-term care, and how the financial and lifestyle choices they make early on can affect future health and happiness, Hutchins said.
In her presentation, Hutchins pointed out that, although one’s future health might be an unknown, there are useful projections individuals need to be aware of, such as that out-of-pocket health care costs between the ages of 65 and 80 can equal $114,000, and then grow to $247,000 by age 90 and $458,000 by age 100.
Figures like these might seem unbelievable to the average individual, but failing to adequately discuss and plan for future scenarios is what often leads to individuals having inadequate plans, and our government institutions having inadequate policies for the aging of the population.
At the root of our society’s unpreparedness for aging is often ageism, which includes the “prejudice against our future selves” that many of us possess.
Ageism was a focus of several workshops at the two-day conference, some of which examined how it can evolve into elder abuse or translate into a lack of advocacy on key issues that older adults and their advocates should be speaking about more often.
CLIMATE CHANGE + AGING
Climate change is foremost among those issues. Often portrayed as an issue of more concern to younger people worried about the future, what’s often overlooked is the fact that older people are the ones who tend to suffer the most harm from the severe storms and climbing temperatures that are already the result of our warming planet.
Jeanne Herb of the New Jersey Climate Change Resource Center at Rutgers Universityshared data showing that older people are at more risk of heat-related hospitalizations and more likely to have chronic conditions exacerbated by severe weather and the power outages and service interruptions that can result from them.
Similarly, older adults and their advocates need to be aware of how immigrants and people in the LGBTQ community are subject to more discrimination and barriers to housing and supportive services as they age, other panelists at the conference argued.
In addition, the coronavirus pandemic has brought to light the way ageism, and bias toward disenfranchised groups, can lead to alarming disparities in disease exposure and treatment outcomes and to the many gaps and weaknesses in New Jersey’s long-term care systems, many speakers pointed out.
Organizers of the conference hoped that it would serve as a call to action, and ideas were shared on how to combat ageism with intergenerational programming and through the arts.
The study entailed recruiting 72 individuals – ranging in age from 20 to 82 – to perform in skits that reflected age stereotypes. Afterward, participants were surveyed on whether the performances had altered their perceptions of aging and generational differences.
As director of Lifelong Montclair, a now-five-year-old age-friendly community initiative, York said she has come to “recognize the need for culture change as a foundational element of age-friendly efforts.
“As more people understand the scope and value of our work on culture change, I believe our work will be that much more significant, and those battles we face along the way will be that much easier,” York said.
Julia Stoumbos, director of aging-in-place programs for The Henry & Marilyn Taub Foundation, said the NJFA conference provided many useful insights into how the leaders of age-friendly communities can help change views of aging, and also the steps that community leaders take to support the goal of aging in comfort, dignity, and safety.
“Often, the approach that communities take in addressing the needs of older adults is compartmentalized. There’s a big emphasis on leisure and recreation – planning Zumba classes and bus trips to Atlantic City. There’s also a tendency to medicalize old age, with programs focused on how to combat it or treat it like a disease.” ~ Julia Stoumbos, director of aging-in-place programs for The Henry & Marilyn Taub Foundation
“Often, the approach that communities take in addressing the needs of older adults is compartmentalized,” Stoumbos said. “There’s a big emphasis on leisure and recreation – planning Zumba classes and bus trips to Atlantic City. There’s also a tendency to medicalize old age, with programs focused on how to combat it or treat it like a disease.
“Those narrow approaches can sometimes lead to older adults being treated as if they are separate from the rest of the community, as if they are less invested in issues that affect all people at all ages,” Stoumbos said.
“Older adults have no less of a stake in the major issues of the day. They need to be empowered to stay engaged on these subjects, and communities need to make sure they are bringing the generations together in conversations about the weighty issues that affect quality-of-life for all.”
The age-friendly movement was first envisioned by the World Health Organization in 2005 as a way to find local strategies to prepare for the global challenges and opportunities of an aging population. The North Jersey Alliance of Age-Friendly Communitiesis supported by The Henry & Marilyn Taub Foundation and the Grotta Fund for Senior Care. Together those foundations are funding age-friendly initiatives in 16 communities in five counties – Bergen, Essex, Morris, Passaic and Union – which together have a population of more than a half-million people. The alliance also works in partnership with NJFA, AARP New Jersey, New Jersey Future and Rutgers University.
Our communities are like structures that support people’s safety and wellbeing. One of the most important ways we can all contribute to this ongoing construction project is by looking out for warning signs of maltreatment. Does someone you know display any of these signs of abuse? If so, TAKE ACTION IMMEDIATELY. Everyone, at every age, deserves justice. Report suspected abuse as soon as possible.
Emotional & Behavioral Signs
Unusual changes in behavior or sleep
Fear or anxiety
Isolated or not responsive
Broken bones, bruises, and welts
Cuts, sores or burns
Torn, stained or bloody underclothing
Unexplained sexually transmitted diseases
Dirtiness, poor nutrition or dehydration
Poor living conditions
Lack of medical aids (glasses, walker, teeth, hearing aid, medications)
Unusual changes in a bank account or money management
Unusual or sudden changes in a will or other financial documents
Fraudulent signatures on financial documents
WHAT IS ELDER ABUSE?
Elder abuse is the mistreatment or harming of an older person. It can include physical, emotional, or sexual abuse, along with neglect and financial exploitation. Many social factors—for example, a lack of support services and community resources—can make conditions ripe for elder abuse. Ageism (biases against or stereotypes about older people that keep them from being fully a part of their community) also play a role in enabling elder abuse. By changing these contributing factors, we can prevent elder abuse and make sure everyone has the opportunity to thrive as we age.
HOW CAN WE PREVENT AND ADDRESS ELDER ABUSE?
We can lessen the risk of elder abuse by putting supports and foundations in place that make abuse difficult. If we think of society as a building that supports our wellbeing, then it makes sense to design the sturdiest building we can—one with the beams and load-bearing walls necessary to keep everyone safe and healthy as we age. For example, constructing community supports and human services for caregivers and older adults can alleviate risk factors tied to elder abuse. Increased funding can support efforts to train practitioners in aging-related care. Identifying ways to empower older adults will reduce the harmful effects of ageism. And leveraging expert knowledge can provide the tools needed to identify, address, and ultimately prevent abuse.
HOW CAN WE REPORT SUSPECTED ABUSE?
(This section has been edited to include links specific to NJ.)
No matter how old we are, justice requires that we be treated as full members of our communities. If we notice some of these signs of abuse, it is our duty to report it to the proper authorities. Programs such as Adult Protective Services (APS), the Long-Term Care Ombudsmen and Disability Rights New Jersey are here to help. If you or someone you know is in a life-threatening situation or immediate danger, call 911 or the local police or sheriff. The National Center on Elder Abuse (NCEA) directed by the U.S. Administration on Aging, helps communities, agencies and organizations ensure that older people and adults with disabilities can live with dignity, and without abuse, neglect, and exploitation. We are based out of Keck School of Medicine of USC. NCEA is the place to turn for education, research, and promising practices in preventing abuse.
This material was completed for the National Center on Elder Abuse situated at Keck School of Medicine at the University of Southern California and is supported in part by a grant (No. 90ABRC000101-02) from the Administration for Community Living, U.S. Department of Health and Human Services (DHHS). Grantees carrying out projects under government sponsorship are encouraged to express freely their findings and conclusions. Therefore, points of view or opinions do not necessarily represent official ACL or DHHS policy. LAST DOCUMENT REVISION: DECEMBER 2018