Session 1 – Defining Caregiving & its Impact on Family, Patients & Friends
The first part of the Caregiving in New Jersey Series was all about defining caregiving and how it impacts caregivers, patients, and friends. Our first presentation was by Courtney Roman of Center for Health Care Strategies, giving an overview on caregiving. Roman explained how a family caregiver can basically be anybody, and we all know people serving in this role. Roman described caregivers as a person who has a significant personal relationship with and provides a broad range of assistance for an older person or an adult with a chronic or disabling condition. These caregivers may or may not live with the person receiving care; their primary goal is to make the person receiving care as comfortable as possible.
Our second presentation was presented by Kathleen Otte of Centers for Medicare and Medicaid Services explaining a national strategy that can be able to support family caregivers. Otte explains how that strategy can be able to empower communities, agencies, and other stakeholder groups to select actions for implementation; this strategy is a significant milestone in our national effort to improve the way we can support family caregivers and the people they are caring for.
The second part of the Caregiving in New Jersey Series was about finding support and building skills. Our first presentation was by Mary-Catherine Lundquist of Rutgers University Behavioral Health Care, COPSA, and Care2Caregivers; Lundquist’s presentation reviewed the different stages of caregiving, as well as what it takes to build a care team while exploring how to identify current connections, exploring community supports, and ways to contact professional support for anyone who is a caregiver.
Our second presentation was by Robyn Kohn of Alzheimer’s Association. Kohn’s presentation talks about Alzheimer’s Disease, including what it is, how common it is, and raising awareness on what an Alzheimer’s caregiver does. Caring for a loved one going through Alzheimer’s is an overwhelming and highly emotional time for the caregiver and rest of the family, and Kohn sheds light on this. Kohn also discussed ways we can help with Alzheimer’s as individuals, as an organization, and in our communities.
Session 3 -Benefits: Family Leave, Respite Care, NJ Family Leave Insurance
The third and final part of the Caregiving In New Jersey Series was about the different benefits related to caregiving, such as Family Leave Benefits, Respite Care, and NJ Family Leave Insurance. Our first presentation was by Lauren Levant of Jewish Home Family talking about the Family and Medical Leave Act (FMLA). FMLA is a federal law that is enacted to protect employees’ jobs and medical insurance when they need unpaid time from work for certain family and/or medical reasons.
Our second presentation was by Jennifer Rutberg of New Jersey Division of Aging Services on Respite Care. Respite care is taking time away from caregiving so caregivers can go back to their duties refreshed and protected from burnout. Respite care can include anything revolving around your self-care and enjoyment.
Our third and final presentation was by Ellen Maughan of New Jersey Paid Leave Outreach Collaborative talking about Paid Family Leave in New Jersey. Paid Family Leave in New Jersey has existed since 2009 and has expanded in recent years. Employees can use Family Leave Insurance to take care of their loved ones, themselves, or cope with any form of trauma or grief.
We want to thank Parker Life for the support of this series!
We will continue to expand our events on caregiving. Our next event will be a webinar for caregivers from Teepa Snow’s “Positive Approach to Care.” This is offered free to NJ caregivers and people who work with individuals with dementia and will be held Tuesday, May 2 at 6pm. Register for this event here: https://us02web.zoom.us/webinar/register/WN_7I3pn_nxTRSGynajBz5qyg
Thanks for being a part of the Caregiving in New Jersey Series!
As the global population continues to grow/age, appropriate housing for older adults is now more important than ever. Most of NJ’s current housing stock was built for young able-bodied adults and nuclear families.
Currently, 30% of homeowners in the US are single and live alone. By 2030, 20% of the US population will be considered “senior citizens,” and most older adults would prefer to live in their own homes for as long as possible. But what if their home is not designed to accommodate them as they age? Fortunately, there are solutions.
Staying in Your Home
Adaptations and renovations can allow people to stay in their homes safely for longer.
For example, AARP has a free HomeFit Guide that explains how to incorporate universal design principles and products into homes, which are safe and easy to use. Most of the elements in the guide can be done without professional assistance
Another option is to hire either an occupational therapist (OT) or physical therapist (PT) who is also a Certified Aging-in-Place Specialist (CAPS). These individuals can make recommendations on how to repurpose your home to reflect your functional, mobility, and cognitive needs so that you can live safely and comfortably.
A CAPS will examine such things as the entry and/or foyer (Is it clutter free? Is there a rug that could cause a person to slip and fall? Is there enough light?). If an individual requires a mobility device such as a walker or wheelchair, are doorways and hallways wide enough to pass? In the kitchen, a CAPS will scrutinize chair height so that sitting and rising are made easier, floor space so that mobility devices can pass, lighting to assist people with visual challenges, etc.
Probably the most important place to have examined is the bathroom, especially since 80% of falls occur here. A CAPS can make recommendations on toilet height, grab bars, slip mats or bathroom chairs for the shower area.
For the rest of the house, stairs should be well lit and have handrails. Another option is a chair lift to take older adults up and down. Smart technology devices might also be beneficial for such functions as turning on the lights or a faucet.
For outside the home, thoughtful landscaping or therapy gardens make a great addition. Engaging with nature has an immense list of health benefits, so make an outdoor space age-friendly. Comfortable furniture for the patio area, safe walkways, good lighting and smart technology increase the ability to enjoy outdoors safely.
Getting Help in the Home
Knowing when help is needed and how to find it can be challenging. One option is to hire assistance directly or via an agency. While Home Health Care (HHC) covers skilled support services (including RN/PT/OT) and is usually paid for by Medicare or insurance following a hospital stay or during recovery, older adults may need a lower level of care to assist them with activities of daily living (ADLs). These services, such as toileting, bathing, dressing, eating, moving, and grooming, can be provided by Certified Home Health Aides (CHHAs). However, CHHA services often have very limited insurance coverage, leaving most people to pay out of pocket.
When deciding what type of provider to employ, consider the following: A family member/caregiver who hires privately may save money, but the “employee” might not have the proper skill set or be insured. Engaging an agency is more expensive. However, such added benefits as knowing that the agency has supervision, specific hiring requirements, insurance, licensed staff, and compliance policies, are often worth the extra cost.
Another option is Adult Day Care. These programs provide care and companionship for older adults who need assistance or supervision during the day. This provides caregivers with a much-needed break and allows them to go to work, school, do housekeeping, etc. Research has shown that social interaction in a Day Care setting improves an older adult’s mental, physical and emotional health as well as reduces the risk of developing depression and dementia.
Finally, for people who need more help or are near nursing-level care, PACE (Program of All-inclusive Care for the Elderly) programs allow people to remain at home. While limited geographically, the number of PACE programs in NJ is increasing. More information can be found here.
When staying in one’s home is no longer possible, what are the options to choose from and how does one assess them?
First, independent living is an option for older adults who do not have severe physical or cognitive challenges. An independent living environment usually includes age-friendly features like grab bars, walk-in showers, emergency response services, community dining, age-appropriate entertainment, transportation services, etc. They are relatively affordable at market prices and many are designated as “affordable housing.” If needed, home care, paid by the resident, can be arranged.
The next option is assisted living. Residents of an assisted living community tend to have physical or cognitive challenges but are still able to retain some autonomy. Assisted living units are often smaller than independent living settings because they lack some of the customary rooms of a typical house, like a kitchen. Staff can help residents with ADLs and medication management.
The third option is a long-term care (LTC) facility or a traditional “nursing home,” which provides shelter and around-the-clock care for people with ADL and health difficulties. Reasons for seeking LTC might include that a person suffered a severe injury or medical emergency and needs rehabilitation to return home, or their physical/mental state is diminishing, which could make them susceptible to injuries or illnesses. Long-term care facilities can also provide hospice care and many offer memory units.
Pulling these options together is the “Life Plan Model,” also known as a Continuing Care Retirement Community (CCRC). Residents can transition their living situation and care level without having to transfer out of the facility. For example, a typical transition might be going from independent living to assisted living or independent living to rehabilitation. This may be the appropriate option for couples where one needs care services and the other doesn’t.
For all of the options in getting help in the home, or relocating to an age-focused place, it is important to plan ahead. Unless related to a hospital stay, Medicare does not pay for home care or long-term care. If someone qualifies for Medicaid or affordable housing, eligibility should be established as early as possible. Long-term care insurance or private insurance may cover some costs, but most people will be paying out of pocket.
Aging is like the weather. You can plan for it, and anticipate what will happen, but you won’t know until it actually happens. Like the weather, aging and finances can change unexpectedly. Older adults deserve to live with dignity and comfort. They deserve affordable, appropriate and accessible housing and must plan ahead and know their options.
William Cotrone recently graduated from Bates College with a degree in psychology and is and future medical student (hopefully in a field related to aging). He previously interned at senior residential sites in Lewiston, ME.
Guest blog by NJAAW Board member Dr. Charisse Smith.
In the spring of 2020, I heralded a call to action for grand-families across New Jersey. Grandparents and other older family members bravely took on the challenge of helping their students with remote or virtual learning during COVID-19.
They assisted their young students with logging onto such online learning platforms as Zoom, Google Classroom, Google Meets, Canvas and plenty of other sites dedicated to virtual instruction. Uploading, downloading, links, passwords, usernames, mousepads, iPads and screenshots had become familiar vernacular for these now tech-savvy older warriors of the web.
This school year, students are back in their classrooms and the laptops and tablets have taken a backseat to in-person instruction.
Additional challenges for in-person learning
Many students are finding it difficult to adjust to a very long and very different type of school day. Masking, social distancing, quarantining and other COVID-19 school protocols have made the school day especially demanding-particularly for the younger ones who had not benefited from any previous type of in-school experience.
Those students who have had the in-person experience of a “normal” school day are also finding it challenging to navigate through an extra set of expectations — wearing masks all day, not sharing materials and sitting socially distanced from friends in the cafeteria — in addition to catching up to grade-level expectations.
Since students returned to school, educators and parents have expressed concern about learning loss due to the shortcomings of virtual learning and the lack of “real school” social interactions.
To help students adjust to the social and academic demands, schools have added an additional layer of supportive learning opportunities to the student day: Social Emotional Learning (SEL).
What is Social Emotional Learning?
According to the Collaborative for Academic, Social and Emotional Learning (CASEL), SEL is “the process through which all young people and adults acquire and apply the knowledge, skills and attitudes to develop healthy identities, manage emotion, and achieve personal and collective goals, feel and show empathy for others, establish and maintain supportive relationships and make responsible and caring decisions.”
There are public school districts in NJ — Westfield, Deptford, Clayton, Paulsboro, Readington, Eatontown and Jackson among them — that have adopted SEL curricula, which address student self- and social-awareness, self-management, responsible decision-making and relationship skills.
When schools are committed to the tenets of an SEL curriculum, the strategic instructional opportunities and practices enhance a positive classroom climate and help students become self-aware, caring, responsible and engaged lifelong learners.
I am again heralding the call to our Grand-families–partner up!
As grand-families and caregivers, you can also support in-school SEL by finding out about your school’s SEL curriculum and becoming more involved with your student’s school.
The benefits of grand-family/school partnerships
Grand-families partnering with schools that support SEL provide a win-win for the entire school community. Intergenerational older adult/student relationships provide wonderful opportunities for SEL and development.
Stanford University psychology professor and Founding Director of the Stanford Center on Longevity, Laura Carstensen, states that as we age, our brains improve in the areas of complex problem-solving and emotional intelligence. Both of these are great qualities of a great mentor! Children can benefit from the counseling and experiences older adults can provide.
Carstensen points out that older adults are exceptionally suited to meet the needs of children because both welcome meaningful, productive activity and engagement. Older adults can help children develop self-awareness and empathetic skills that are essential to building healthy relationships in school by cultivating their relationships at home; identifying, communicating and acknowledging emotions, and modeling empathy and coping skills.
Our students thrive when schools and all families partner together. As one of the first in my school community to see students arriving at school, I have observed our older adult family members walking young students to their class lines outside on the blacktop playground. I’ve also heard their morning conversations, which have included making sure that the students are respectful toward their friends when joining their class line and ensuring that they say “good morning” to classmates.
At lunchtime, my first-graders are eager for me to read their “love notes” — words of encouragement and daily affirmations from their grandmas and abuelitas tucked inside their tiny lunch boxes. These are definitely warm-and-fuzzy moments, even for me!
Grand-families, please help our schools!
Schools have room for improvement. Our schools can be consistent in creating spaces where families feel welcome to share their culture, language, wisdom and skills.
Reach out to your child’s school, teacher or principal to develop a partnership. Join your school’s Parent Teacher Association (PTA) or Parent Association. The skills, wisdom, and time you volunteer may make a difference in how your young family member connects socially and emotionally to school.
Let’s continue this course of positive relationship building and support because we all are family–parents, students, grand-family members and educators. Thank you!
NJAAW Board member Dr. Charisse Smith, principal consultant and owner of Sankofa Educational Consulting, LLC, in Trenton, NJ, is the new Curriculum Supervisor for Social Studies, kindergarten through grade 6, for Trenton Public Schools. A member of the National Sorority of Phi Delta Kappa Inc. – Pi Chapter, an organization of professional educators, she and her chapter sisters focus their volunteer efforts on youth, education and service to the Greater Trenton area community. Smith and her husband, Steven, are the proud parents of Raven and Satchel. She is also a caregiver for her parents, Richard and Saundra.
https://www.njaaw.org/2021/11/01/grand-families-call-to-action/These ideas and resources for my guest blog titled “Grandfamilies: A different call to action” are just a small slice of the Social Emotional Learning (SEL) pie. Grand-family members: Our students still need you! Use those SEL skills that have carried you through life and life’s challenges. Thank you!
SEL partnership questions for the student’s school
Does this school have multiple ways to maintain two-way communication with families; to invite families to understand, experience, inform and partner with the school to support our students’ social and emotional development?
Do families participate in the school’s/district’s SEL team?
Does this school or district provide meaningful opportunities for all families to learn and contribute to SEL?
Ways older family members can support SEL
Participate in any back-to-school events and parent-teacher conferences (in-person or online)
Add yourself as a communication contact between the school and home
Share information with the school/teacher about how your child learns best
Mentor a student or two
Become a from-home volunteer for your child’s school (stapling packets, cutting out laminated decorations, volunteering your translation skills for flyers and information that are shared in the community)
Share your culture with your child’s school
Help unpack and repack your child’s book bag or backpack to check for important information about school and schoolwork
Practice SEL activities with your student
SEL activities you can do at home
Dedicate time to talking with your child about their day to help students navigate the art of conversation
Pay attention to your child’s behavior before and after school
Help establish and maintain routines such as preparing for school in the morning, homework time, playtime, bath time and most importantly, bedtime
Establish an open line of communication (texting, FaceTime-ing, etc. with older students)
Be aware of “red flags” or changes in “normal behavior” (losing interest in school, friends, or favorite activities), eating (loss or insatiable appetites), and/or sleeping behaviors (unable to sleep, sleeping during school hours)
Read books or watch online storytellers that promote SEL
Participate in mindfulness exercises together, such as walking, yoga, meditation, breathing exercises, coloring with crayons or colored pencils or watching clouds
Attend school SEL activities
Resources for grandparents and others caring for school-age children
The Whole-Brain Child by neuroscientist and parenting expert Daniel Siegal and Tina Payne Bryson: This New York Times Bestseller explains the child’s developing brain and how we can best support it.
Troublemakers: Lessons in Freedom from Young Children at Schoolby Carla Shalaby: Follow the stories of four different young children, known in their respective classrooms as the “troublemakers.” This radical take encourages us to shift our adult perspective to better understand the and sometimes confusing behavior of children.
Yo Soy, I Am by Trenton, NJ-native Jacquelyn León: This is the tale of how a child’s name came to be. It is interwoven with family, history, culture and love, to fortify the connection between the child’s name and the child’s identity to the world. The book celebrates and honors the home as the child’s local roots grow and blossom across the world.
Julián is a Mermaid by Jessica Love: Julián is a boy who lives with his abuela (grandmother) in New York City. Although his preferences and attire may seem unconventional, he is supported by those around him to be himself.
The Story of Ferdinand by Munro Leaf: Bulls are supposed to fight, correct? Not Ferdinand. A peaceful and calm bull in the bull-fighting rings of Spain, Ferdinand remains true to himself despite the pressures to change.
Marisol McDonald Doesn’t Match by Monica Brown: Marisol McDonald is a biracial girl with red hair and brown skin. In many ways, Marisol defies the norms and sometimes confuses those around her. She is, however, confidently herself!
Each Kindness by Jaqueline Woodson: Chloe and her friends have no interest in playing with Maya, the new girl at school who wears ratty hand-me-down clothes. But when Maya leaves school and Chloe realizes her mistake, she learns that you don’t always get a chance to apologize.
The Invisible Boy by Trudy Ludwig: Brian is unnoticed by the other students in his class. He is never included or invited until the new student, Justin, arrives and shows us that it just takes one friendship to change a person’s life.
About sharing and gratitude
A Chair for My Mother by Vera B. Williams: Classic and award-winning story about a family’s home being destroyed by fire. A young Rosa, her mother, and grandmother save their coins to buy a really comfortable chair for all to enjoy.
Rainbow Fish by Marcus Pfister: Rainbow Fish has beautiful glittering scales like no other in the ocean. While at first, he refuses to share his most prized scales, he learns that when he does, he creates invaluable friendships.
About overcoming fear and anxiety
The Good Eggby Jory John and Pete Oswald: The Good Egg is always doing what it should, even taking care of the other eggs who are not doing their best. But when the Good Egg’s own shell starts to crack, it realizes that balance and self-care are more important than perfection.
Jake the Growling Dog Shares His Trainby Samantha Shannon: Follow Jake, a sweet, kind, and misunderstood dog, as he learns more about sharing, facing his fears, and the many remarkable differences in the world
SEL literature for older readers
Bridge to Terabithia by Katherine Paterson: Jesse’s colorless rural world expands when he becomes fast friends with Leslie, the new girl in school. But when Leslie drowns trying to reach their special hideaway Terabithia, Jesse struggles to accept the loss of his friend.
New Kidby Jerry Craft: Seventh grader Jordan Banks loves nothing more than drawing cartoons about his life. But instead of sending him to the art school of his dreams, his parents enroll him in a prestigious private school known for its academics, where Jordan is one of a few kids of color in his entire grade.
Esperanza Rising by Pam Munoz: Esperanza thought she’d always live a privileged life on her family’s ranch in Mexico. She’d always have fancy dresses, a beautiful home filled with servants, and her mama, papa and abuelita to care for her. But suddenly, tragedy forces Esperanza and mama to flee to California and settle in a Mexican farm labor camp.
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 firstname.lastname@example.org.
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 email@example.com. 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.
As a young child growing up in New Jersey, I recall spending countless summers in the sandy woods of Wall Township with my maternal grandmother, Carolyn Holland.
On her screened-in porch, we spent hours playing such card games as Pitty Pat, War and Casino. This card shark, with less than an eighth-grade education, showed me no mercy, winning game after game! Through these card games, she fortuitously taught me how to quickly identify numbered groups (subitizing*) and strategy (critical thinking).
My paternal grandfather, Robert E. West of Neptune, instructed me in the art of applying the correct tip for great service at the local Perkins Pancake House. Maternal aunt Doris Sergeant of Asbury Park cultivated my love of reading and storytelling through her reading aloud. Her fluctuating animated voice magically fit each and every character of the stories she read.
As I reminisce about these special moments as a wide-eyed, inquisitive youngster, I now appreciate them as authentic learning experiences. I truly cannot recall specific reading or math lessons or feeling that these moments were “school,” but as an educator, I recognize that the benefits of simple card games and stories read to me set me on the path toward academic success.
Although I assist teachers in applying curriculum and best-teaching practices to classrooms, the simple games, conversations and nightly read-alouds with Carolyn, Robert and Doris were invaluable.
COVID-19 and virtual teaching/learning
According to the New Jersey Department of Education, there are approximately 2,734,950 students in New Jersey’s public and charter schools who are now participating in some form of virtual or remote learning due to the COVID-19 crisis. Many New Jersey schools pivoted from photocopied worksheets and packets to working exclusively online with students in virtual classrooms.
In a matter of a few weeks, New Jersey school districts found themselves quickly gathering their troops of learning experts, teachers and educational technology departments to provide quality learning opportunities for all of their students. Families also found themselves banding together to navigate through digital learning platforms like Zoom, Google Classroom, Google Meets, Microsoft Teams, Class Dojo, Canvas and Blackboard.
Older Americans are teaching/learning, too
Older Americans also fearlessly accepted the call to join the ranks of the virtual homeschooling faculty. Because many parents continue to work as essential workers, older adult family members have been designated as the at-home schoolteacher. These older family members are ensuring that children are logging on, participating and completing school assignments.
One example is a 68-year-old grandmother in Mercer County’s Hamilton Township, Mrs. Jones. She joined the ranks of homeschoolers this March. Mrs. Jones is not only caring for her ill husband, but by working in online learning platforms to assist her kindergarten-aged grandson, has expanded her technological skill set.
Through perseverance and a little bit of coaching, Mrs. Jones is now more comfortable helping her grandson with the daily requirements of cyber-learning such as logging on to online class meetings; monitoring reading, writing, and math assignments in Google Classroom; accessing books online; following up with emails, and communicating with teachers via the Class Dojo app.
Familiarizing oneself with multiple learning platforms can be overwhelming even for the most tech-savvy person. But older Americans, like Mrs. Jones, are courageously balancing the duties of being a caregiver for an ailing spouse, running a household and homeschooling an active kindergartener.
I admire Mrs. Jones for her tenacity and grit during this challenging time. She admits that working with technology is frustrating, and she felt like giving up, but I encouraged her to take care of herself and to do her best. Her best is amazing!
Other ways older adults can share knowledge/expertise
I encourage all older adults who are caring for and/or homeschooling young family members to share their knowledge and expertise by:
Counting and grouping the number of tiles on the floor
Finding a pattern in the carpet
*I mentioned subitizing before. Subitizing is a hot topic in math education circles. It means “instantly seeing how many.” Math educators have discovered that the ability to see numbers in patterns is the foundation of strong number sense. Visit https://mylearningspringboard.com/subitizing/
Following a recipe using measuring spoons and cups
Writing a song together and recording Tik-Tok videos of you singing
Coloring in coloring books
Listening to books on tape or online together
This website features videos of actors reading children’s books, alongside creatively produced illustrations. Activity guides are available for each book. https://www.storylineonline.net/
Older adults have much to give and young people, much to receive! I would dare to guess that there are many Mrs. Joneses here in New Jersey. Are you one? You deserve our gratitude, respect and support.
As a New Jersey educator, I would like to thank all of the caring and brave older Americans in our state who are committed to sharing their knowledge, wisdom, love and expertise to help our students continue to grow and learn!
Dr. Smith is the featured guest on Episode 106 of Aging Insights, with host Melissa Chalker — watch “Learning Together” now!
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.
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.”
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.
“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 JAMAInternal 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.
If you’re a caregiver, or will soon become one, consider the following:
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
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
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.
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.
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.
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.
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.
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.