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Founder’s Story: Parkinson & Movement Disorder Alliance

At the very heart of Parkinson & Movement Disorder Alliance (PMD Alliance) is a deep desire to meet people where they are at in their movement disorder journey. We roll up our sleeves, hold your hand and remind you that you will not walk alone.

Whether you’re someone living with a movement disorder, or a care partner, an adult child, a friend, a doctor or a support group leader, PMD Alliance is a uniquely people-oriented community designed to care for you. We cannot do this important work alone. Together, alongside donors, corporate partners, volunteer Ambassadors, doctors and advance practice providers, the uniquely supportive PMD Alliance community provides innovative and inspiring programming and resources to those navigating a devastating diagnosis.

Because at our very core – that’s just who we are. That’s why we do this work.

In 1992, we noticed Wayne was having tremors in his right hand. We didn’t think it was anything serious, so we continued our normal, busy schedule. Wayne was an early riser and ran three miles every day! But by 1998, the tremors were more significant and were accompanied by constant fatigue. Just one year later, he was diagnosed with Parkinson disease. – Helen Squires

Helen Squires and her husband, Wayne, were married for 55 years before he died from complications due to Parkinson’s in 2016. At the time, there were limited resources for people living with Parkinson’s, let alone support for care partners and families navigating this disease with a loved one.

 

 

 

 

 

TURNING STRUGGLE INTO ACTION 

It was watching her mother-in-law struggle to keep up with her husband’s declining health that pushed Sarah Jones, CEO and co-founder of PMD Alliance, into action.

Some memories are forever etched in our minds and hearts. I was standing on a moving walkway in the Denver Airport. My wife and I were returning from a visit with her parents. Her father’s Parkinson’s was stealing his very existence and simultaneously breaking my once fiercely energetic mother-in-law. We believed she would die before him because of the stress and strain she was experiencing in caring for her husband,” says Jones.

“As former ministers, my in-laws were active and social – rarely without people. Yet as the disease progressed, their world shrunk. They were told by doctors there was nothing more to be done. Their souls were crushed, and they were alone. And I was outraged.

Millions of dollars were pouring into research in attempt to change the future and meanwhile, no one had a service model focused on the people living with a degenerative disease today. In that moment I knew an organization needed to be created to attend to the tens of millions of people – not just patients – whose lives are impacted by Parkinson’s and other movement disorders.”

A SHARED VISION
Sarah’s vision was one that was shared with co-founder, former colleague and friend, Judy Talley who had spent the previous 15 years working in long-term and residential care settings. She and Sarah met in 2015 when working for the American Parkinson Disease Association in Tucson.

“Motivated by a deep desire to help people trying to keep their heads above water every day, PMD Alliance was born. Having run nonprofits for nearly 25 years, I was determined to create a new set of services that offered real, honest, and empathic services that moved the needle on quality of life and reduced isolation,” says Jones.

Judy Talley adds, “Sarah and I have an amazing ability to quickly and clearly communicate with each other, and together have always been aligned in our aspirations for the organization. For me, the scariest part was the most fun part. Starting something new. Developing new events and new ways to engage people. Coming up with a new paradigm to support people in their daily lives and that honors them in the entirety of their living and was about more than the disease.”

A NEW AND UNIQUE SPACE
One of the “new” things that PMD Alliance has introduced to the movement disorder space is its unique Movement Disorder Care and Support Ecosystem© which focuses on strengthening all persons affected by a diagnosis. When everyone involved is better educated, better supported and more connected, the person with the movement disorder has more opportunities to live more fully.

At PMD Alliance, that translates into support groups for care partners, a Facebook group for adult children, a unique catalog of programming that focuses on everything from physical activity to medication options to end of life care. Just ?ve years since its start, as the organization continues to grow and serve people not only nationally but internationally, PMD Alliance still strives to meet people where they are at in their journey and to ?ll needs when they are seen.

I am amazed how strong people with the disease can be; accepting, resisting, and adapting as they cope through the years. – Judy Talley, Co-Founder PMD Alliance

The reality is there are 40 million Americans living with movement disorders. 40 million. While there is still no cure for Parkinson’s disease, with PMD Alliance there is hope. There is partnership. There is community. And there remains a deep desire shared among everyone involved in the community to touch the lives of many.

Oftentimes among its staff, PMD Alliance asks each other – “what is our ‘why’?”

It’s a good reminder to check-in. To make sure the programs and resources offered meet a need. To search for unmet needs and to innovate. To remember why it is that this work is so important not only to people living with movement disorders, but for those who care about them.

When we do that, we are reminded of Helen Squires and why PMD Alliance was started in the first place. We are all trying to navigate and live our very best lives despite this devastating disease, and if we work together, we have a better chance at doing just that.

Will you join us?

 

About the Author: Sarah Jones, MPA, MS Strategic Design, CEO. With more than 25 years of experience leading non-profits and healthcare programs, Sarah is a visionary leader. As a dyed-in-the-wool dynamo who continually seeks opportunities to impact and address unmet needs, Sarah has designed programs and led training for local, national and international audiences, including groups in Canada and Botswana. Called upon to solve issues of efficiency and develop a culture of innovation, she has also acted as a consultant for global brands, including Campbell’s Soup. Sarah holds two master’s degrees: Master of Science in Strategic Design Management and Master in Public Administration. She has consulted with large health care systems, integrative medicine clinics teaching utilization of strategic design principles to innovate and change end-user experience.  Sarah is driven to create a world that people are excited to live in.

The Power of Breath

I have always been fascinated with the power of breath.

We carry it with us at all times. We breathe somewhere around 20,000 breaths every day. Most of us barely give our breath any thought at all. Yet how we breathe can have everything to do with our health and well-being.

Try it for yourself:

Close your eyes (after reading this of course!) and simply watch and feel your breath, without changing it or judging it in any way.

Notice the length of the breath, the temperature, where it moves through your body, if it’s smooth or rough. Do this for just a few minutes or as long as you like. How do you feel? Relaxed, calm, peaceful, more present?

Help Reduce Stress: Bringing awareness to our breath, even for just a few minutes, can help us feel calm and reduce feelings of stress and anxiety. Research shows that stress is a contributing factor to many diseases.

Maybe while you were breathing you noticed the different qualities of the inhale and exhale. The inhale literally lifts and expands the body and provides inspiration and energy. The exhale contracts the body and provides a sense of release and grounding.

Which do you need more of?

  • Need a boost of energy? Increase the length of your inhale.
  • Need to relax and ground? Increase the length of your exhale.

I lost my mother to Alzheimer’s about ten years ago. While sick, she didn’t want to get out of bed in the morning. I’d sit with her and encourage her to breath in her right nostril and out her left nostril. Right nostril breathing, also called sun breath for its activating nature, stimulates the left side of the brain – the more logical, get up and go, side of the brain. Three rounds of ten would be just enough to get her to re-focus and provide that little boost of energy she needed to start her day. Try it if you feel sluggish yourself at any point during your day.

Trouble sleeping? Try the opposite. Left nostril breathing, or moon breaths for their more cooling and calming nature.

Bottom line: The way we breathe can have a tremendous impact on our energy, mood, stress level, focus and attention, and sleep. These are all factors in healthy aging. If you care for someone, personally or professionally, breath can be a tool to take care of both of you.

Have you paid attention to your breath today?

About the Author: Jane Stelboum is a Yoga Teacher/Trainer, a Certified Brain Longevity® Specialist, and founder of Sarasvate (sar-as-VAH-te´). Through workshops, private sessions and speaking engagements she shares how the tools of yoga, and other lifestyle choices, help maintain brain longevity and healthy aging.

Overcoming Technology Hurdles to Sign up for the COVID-19 Vaccine

While the COVID-19 vaccine has been available for several months – there are still many adults who have yet to receive their first dose.

Aging Life Care Association Corporate Partner CandooTech offers technology solutions for seniors and their families, and has some initial tips to aid those still looking at, or beginning to consider vaccination.

Please note there can be changes in vaccination locations as the variants evolve and conditions change locally, regionally, and nationally.

Each state has its own system for sign up and distribution, many require signing up online. For most people, this has been confusing at best and, in many cases, impossible to navigate. For older adults who don’t feel comfortable with technology in general, this can be an insurmountable hurdle to getting a potentially life-saving vaccine.

Here are our top tips:

1.     Get information to learn if you are eligible:

Find out what your state is offering. This may be different by county or city. You can get an overview by going onto the AARP site.

2.     Get information about where you can get the vaccine and how to sign up:

For example, in California, you can sign up for alerts by county.

In New York state, in addition to adults over 65 years old, the vaccine is now available to healthcare workers, transportation workers and more. You can find out if you are eligible here. Each site has a separate way to register and separate availability. Here’s a list of vaccine locations. For New York City, you can find a location here.

3.     What information you will need to register for an appointment

In order to sign up, at a minimum, you will need to include:

  • Your full name

  • Your date of birth

  • Your address

  • Your insurance information: name of insurance, name of insured, member ID and Group ID

  • Your phone number

  • Your email address if you have one

4.     Getting an appointment:

This can be a challenging and frustrating process. It sometimes requires hours of refreshing a page to see when an appointment is available and/or going to multiple different websites to see what’s available. Don’t give up! Did you know that you can download an app on Google Chrome to help you automatically refresh the page?

5.     Once you get an appointment:

When you get an appointment, you will receive a confirmation by email or text message. You will have some paperwork to fill out. You can either fill it out online, or you can print it out and fill it out on paper. You will need to print this with you to the appointment. You will be asked questions like: “have you ever had a serious or life-threatening allergic reaction before?” “Do you take medication that affects your immune system?” Please be prepared to answer these questions.

If you need help going online to get this information or fill out some of the forms, please call us at 646-758-6606 or email us at support@candootech.com. We can arrange for an online session to help! To sign-up for an online session, go here and use promo code VACCINE.

This blog originally appeared here: https://www.candootech.com/blog-page/vaccinehelp

About the Author: Liz Hamburg, Candoo Founder. Liz is a high energy, entrepreneurial executive who is passionate about making an impact in the world. She has over 20 years of experience starting up and growing innovative organizations both in the U.S. and international markets.

Summer Safety for Seniors

With the pandemic now hopefully behind us, how can seniors most safely enjoy and celebrate this summer?

There are two priorities to keep our community’s elders safe:

  1. avoiding the dangers of excessive summer heat and humidity, and
  2. preventing falls, a year-round need, but one where summer presents some special challenges.

Keeping Cool During Our Hot Summers – Unfortunately, heat exhaustion and heat stroke, which can even lead to death, are much more common in the aging.   Simple prevention includes staying out of the direct sun between 9 am and 3 pm, exercising in air-conditioning or during the cooler times of day, staying well hydrated with water & electrolytes (sports drinks), and wearing loose, lightly colored clothing.   Non-alcoholic iced drinks can also help keep you cool, and be careful consuming alcohol – too much of it can be dangerous, for everyone.

How Do You Spot and Treat Someone Who is Over-Heated?  People with heat exhaustion or heat stroke can display weakness, dizziness, headache, confusion, a fast pulse, heavy sweating or red, hot, dry or damp skin, and lose consciousness (pass out).   Treatment includes moving them to a cooler place, using cool cloths or a cool bath to lower their body temperature, sipping water, and if they do pass out or symptoms get worse, get immediate medical attention or call 911.

Preventing Falls Outside – Falls are one of the major reasons seniors go to the Emergency Dept, get hospitalized, and even suffer an early death.   Along with falling from heat exhaustion/stroke, many summer activities can lead to falls.  This includes falls while hiking up in our beautiful Blue Ridge Mountains or at other area attractions.   Along with taking a sturdy walking stick to navigate curbs and other uneven surfaces, be sure to pack all the supplies you need to stay well hydrated and safe from the heat and sun.  Be sure as well to take a charged cell phone and let someone not with you know where you’re going and when to expect you back.

Closer to home, other activities that can cause a fall includes yard work and anything involving a ladder.   Rather than risking an injury or maybe even your life climbing a ladder to clean a window or paint some trim, hire a college student or a contractor to do the work.  It can save you in the long run, literally!   Yard work can also involve lifting heavy bags, rocks, or other items, all of which can contribute to joint and back pain, one of the most common reasons seniors go to the doctor and use pain medication.   Again, hire someone else to do the work to avoid it becoming a pain in the neck, or your back.

Fall Prevention in the Home – although we all know how important it is to prevent falls, we often avoid or delay making needed home safety modifications.   Right now, during the summer, is as good a time as any to finally make those necessary changes.   Start with a home safety assessment for which there are many good lists online, including from AARP.   Then follow-thru on the priority items, to keep you and your loved ones safe this summer and then the whole year through.

ENJOY THE SUMMER, SAFELY!
About the Author: Fred D. Jung, RN, PhD is the founder of Blue Ridge ElderCare Advisors, LLC. He has expert knowledge and experience in disease management, infection control, healthcare insurance, geriatric & end-of life care. With a PhD in Adult Health Nursing from the University of Texas, he developed one of the first on-line case management courses for the University of Colorado. Fred began his career in long-term care & has held positions as an RN, clinical specialist, faculty member, Director of Quality & Case Management, and as an Administrator at the UVA Health System. He now focuses on improving the quality and effectiveness of care for the aging and elderly in central Virginia and the Shenandoah Valley.

SELF-Compassion is a Gift

Gift of Compassion eventAfter the last year and a half of living with a pandemic and beginning to see the signs of improvement, I was more than ready to listen to the June 6th virtual event by Dr. Lori Stevik Rust, “Compassion is a Gift.” As Aging Life Care Professionals in the human service field, most of us would say we are “compassionate” with our clients and families.

Dr. Stevik Rust pointed out that most people are in favor of offering compassion to others, but less able to offer self-compassion, and reminded us that self-compassion is a gift we bestow on ourselves (e.g. Put on our own O2 mask before helping others.)

She shared a poignant story of her first case during the Aids epidemic in the 80’s and how unprepared she felt. Her uncertainty led to self-criticism and the fight or flight response. She reminded us that the antidote to self-criticism is self-compassion (recognizing we are not perfect) which results in authenticity.

Self-compassion makes authenticity possible. According to Dr. Stevik Rust, research has shown that people who practice authenticity are more successful, resilient, motivated, emotionally stable, accountable, and better leaders.

Compassion Fatigue was discussed which can result in low energy, guilt, anger, self-isolation, feeling burdened, poor self-care, or denial of symptoms as well as the risk for post-traumatic stress disorder in ourselves and others. She asked us to acknowledge and have enough self-awareness that things might be escalating with compassion fatigue and to stop and say “it’s ok to take a break and care of myself.”

Easy quick self-care options were shared: massages, sexual activity, laughter, music, bubble baths, journaling, exercise, reading, etc. These can all help reduce the stress hormone cortisol.

While much of what she shared was not new information for those of us in the field, it was a good reminder of the importance of self-care for the 50 attendees.

I came away being impressed with her warm, engaging manner, and as one attendee said, “I love the fact that you present in a non-saccharine fashion. Very authentic and honest.”

About the Author: Susan Wack started SW Professional Care Management, LLC (SWPCM) in 2007 after working for over 20 years in hospitals, home health, disability services, and long-term care. She is a Certified Advanced Social Work Case Manager (C-ASWCM) and a Licensed Clinical Social Worker (LCSW). Susan received her Master’s Degree in Social Work (MSW) from the University of Iowa and her Bachelor’s of Science in Social Work (BSSW) from St. Louis University. She is a member of the Academy of Certified Social Workers (ACSW), the National Association of Social Workers (NASW), and the Aging Life Care Association (ALCA). Susan provided training on Elder Care Mediation to attorneys and social workers in Indiana, and serves on ALCA’s Midwest Chapter Board of Directors.

How to choose a Skilled Nursing Facility

people in skilled nursing facility

When families have exhausted other options sometimes the decision is made to move an older loved one in a skilled nursing facility.

Usually, this decision is made under stress, without much time, and/or without a lot of information. You do not need to do this alone. Having a partner in this process, i.e. a professional who can help guide, support, and facilitate a good move to the best possible skilled facility is critical.

This decision can be made easier with more information that an Aging Life Care Professional® — certified professionals with degrees in geriatric care management, nursing, social work, or other professions related to aging — can offer, and sometimes even be avoided.

Aging Life Care Professional® and ALCA Board Member Steve Barlam offers advice for families considering a skilled nursing facility (SNF) for their loved one.


When considering a skilled nursing facility, there are gross and fine screening issues to look at. There are several questions to consider to help in the selection process.

Let’s take a look at the gross screening considerations first: 

Gross screening

…has to do with basic issues:

  • Geography / Location – where is the skilled nursing facility located? Close to you? Far away? Will you need an Aging Life Care Professional® (ALCP) to help check in on your older family member?
  • What will be covered by insurance / HMO — Insurance issues can be daunting. An ALCP can help navigate complex insurance guidelines and forms.
  • Open beds – ensuring there is space at the facility is another initial concern that must be cleared up before you can proceed.
  • Basic skills / specialties tied to the condition and diagnosis – what skills or specialties does the staff have? Will they be able to address issues you need dealt with for your family member?

Fine-tune screening

…has to do with items that are important to you.

Not everything will be important, so you would want to be clear on what is important to you:

  • The reputation / record / licensing deficiencies – does the facility have a good reputation? Is it up-to-date on its licenses?
  • The look / feel / smell of the place – How is the lighting? Is it well-lit and welcoming?  Is there an outdoor space available for residents? Visit at two different times if possible, once during the day, and once during the evening to get a sense of the facility for a fuller perspective.
  • How is mealtime handled? Are meals served communally or in the patient’s room? What would your family member be comfortable with?
  • The ability to visit / access the patient? Is it convenient, accessible? What are the visiting hours? During the pandemic, are there more stringent requirements?
  • Staffing – What is the ratio of staff-to-resident? How many patients does the C.N.A. have on the day shifts?  Night shifts?  Who is ultimately responsible for the care?   Director of Nursing? The Administrator? How long have they been in their position? Are they there on-site daily?
  • Communication – If you have identified a need, who will you be able to speak with? If there is a problem, with whom will you be able to speak? Get their name and phone number.
  • Roommates – If your family member will be placed with a roommate, how are they matched? If there is a problem, how is that resolved?
  • Social needs? What is done for the patient’s social needs? Are there activity programs tailored to the individual?
  • Other events – Are religious services accessible? Cultural events?
  • Medical Doctor – Ask who would be the medical doctor following my family member? How long has s/he been there? What’s their bedside manner? Ask “How often will my family member be seen? How does information get communicated with his/her primary care physician and me?”
  • Interdisciplinary Team Meetings? How often does the team meeting? Is the family invited? How often is the plan reviewed?
  • Cost – What is covered and what isn’t.  Is it certified by Medicare / Medicaid?
  • A specialty? What does the facility specialize in? – Dementia care?   If so, is it distinct/separated?
  • Additional Services – If additional services (chemo/dialysis / other specialized rehab) are not provided in-house are needed, how is transportation arranged?

These questions and considerations can help a family get started when considering a skilled nursing facility. However, engaging an Aging Life Care Professional® can help even the savviest family navigate these questions, and can help in the coordination process. Time and money invested in engaging a qualified, certified Aging Life Care Professional® can be a time and money saver in the long run.

FIND AN AGING LIFE CARE EXPERT HERE TODAY: https://www.aginglifecare.org

About the Author: Steven Barlam, MSW, LCSW, CMC. As a Licensed Clinical Social Worker, and after 30 years in the private sector, Steve has assumed the CEO role at JFS Care in Los Angeles, which provides quality eldercare solutions for seniors and their involved families including in-home care, and professional coaching/guidance through Care Management Services. His driving motto is, “It has to be good enough for my mom,” as he is all about ensuring quality care experiences for clients and their families. Steve values both tradition and innovation as he leads his team to grow JFS Care’s presence to deliver better care solutions in Los Angeles. Steve has been a member of ALCA since 1991, was Board of Director’s President in 2003, is currently on the Board of Directors and serves as Co-Chair of the Chapter President’s Committee.

Six Steps to Better Brain Health

While the COVID-19 pandemic has presented us with challenges, it has also taught us lessons. Likely, you have tapped into your emotional reserves and discovered how resilient you are during this time.

Brain health, of which mental health is an essential component, has been at the forefront of many conversations with family, friends, and colleagues during the pandemic.  We have all experienced varying levels of uncertainty, stress, anxiety, and grief during this time. Our brain health has helped us manage and process these emotions as well as exercise resilience.

June is Brain Wellness and Alzheimer’s Awareness Month. Take this opportunity to review and strengthen these 6 key practices, necessary for rebuilding your reserves, strengthening your brain, and lowering your risk of developing dementia, including Alzheimer’s.

Six Steps: Move. Eat. Sleep. Monitor. Engage. Challenge.

  1. Move your body. What’s good for the heart is good for the brain. Regular physical activity improves blood flow to the brain, enhances memory and learning, improves mood and thinking. And it’s never too late to start. Begin with a short walk in your neighborhood or gentle chair yoga. You can find helpful videos online. Here’s one video to get you started. Please check with your healthcare provider first to make sure you are cleared for exercise. And be aware of any hazards (cords, shoes, rugs, poor lighting, uneven sidewalks) in the area where you chose to exercise.

 

  1. Eat smart. It’s true: We are what we eat. One of the best approaches to eating in support of brain health and lowering the risk of developing dementia is adopting a Mediterranean diet. The foundation of this diet is fresh vegetables and fruits, nuts, seeds, legumes, whole grains, herbs, spices, fish, seafood, and extra virgin olive oil. Eat poultry, eggs, cheese, and yogurt in moderation. Only rarely eat red meat. Don’t eat added sugars, processed meats, refined grains, or highly processed foods. Farmers markets are opening again. Fresh produce is abundant. If you garden, all the better.

 

  1. Get your Zzz’s. Often overlooked, sleep is fundamental to brain health and lowering dementia risk. Seven to eight hours of consecutive sleep a night is restorative and cleansing. Sleep also plays an important role in restoring our immune system as well as helping manage stress and balance mood. Regular physical activity and eating smart can also help aid sleep. If you suspect you have sleep apnea, which disrupts sleep patterns and is harmful to brain health, please talk with your health care provider.

 

  1. If you have a health condition such as hypertension, high cholesterol, depression, or diabetes, follow your doctor’s advice closely. Take medication as prescribed. Let unchecked, these health concerns could result in serious complications. All these conditions have been shown to contribute to an increased risk of developing dementia. And if you smoke, quit. Try a smoking cessation program.

 

  1. Social engagement and interaction are important. Many of us have experienced isolation during quarantine. The pandemic has reinforced how vital human connection and interaction are to our overall health, especially our brain health. Research shows that individuals who stay socially engaged experience the slowest rates of cognitive decline. Fortunately, public spaces are slowly reopening and more people are getting vaccinated. Pace yourself but get out there and spend time with family and friends once again. Something as simple as an in-person coffee chat with an old friend can do wonders to brighten your day, enhance your mood, and benefit your brain.

 

  1. Stimulating the brain with intellectual challenges helps trigger new brain cell growth and builds new neural pathways. To strengthen and flex your brain, try something new. Learn a new language. Always wanted to play to piano? Start now! Take a poetry or memoir writing class. How about those salsa dancing lessons you’ve always dreamed of? Here’s your excuse to find a class and get started. The possibilities are endless.

For more ideas, check these Additional Resources & Encouragement:

About the Author: Contributor Keri Pollock directs marketing and communications for Aging Wisdom, an Aging Life Care practice based in Seattle. She is a member of the Age Friendly Coalition for Seattle and King County (WA), serves on the Frye Art Museum Creative Aging Programs Advisory Committee, the Marcomm Council of the Washington State Chapter of the Alzheimer’s Association, and the ALCA PR Committee.

Gray is a Color on the Rainbow

Two men having coffeeJune is Pride Month, a time to celebrate and affirm the diverse mosaic of our humanity. Part of this rainbow coalition includes a growing number of LGBTQIA+ elders. Conservative estimates are that there are over 3 million LGBTQIA+ people over 50 living in the US today. According to SAGE, an advocacy organization for the older LGBTQIA+ community, that number is expected to grow to over 7 million by 2030. LGBTQIA+ adults (ages 65 and older) came of age during the McCarthy Era when their identity was severely stigmatized and criminalized. They had to deny who they were and live under a blanket of silence or risk verbal or physical assaults, job loss, discrimination, and ostracization. Since then, several hard-won victories, such as the Equality Act, bans discrimination based on gender identity and sexual orientation.

However, many older adults in the community still face unique obstacles. Elderly LGBTQIA+ adults are less likely to have had the opportunities to parent, reduce their support system, and increase their likelihood of living alone. The resulting isolation has often led to financial insecurity. As they age, they are much more likely to be caregivers for their friends in the LGBTQIA+ community. Because they have experienced many challenges throughout their lives, they have higher incidences of depression, substance abuse, and HIV. Many older LGBTQIA+ adults experience high levels of discrimination in accessing assisted living or affordable housing. In fact, a transition into senior living for many can mean going back “into the closet” as they do not have confidence that senior residences can accommodate their care and safety needs. This is compounded if they have memory issues. Many same-sex partners are still denied visitation rights in hospitals and long-term care residences. Many LGBTQIA+ elders are not candid about their sexual orientation for fear of receiving inferior care from medical providers.

Some positive developments are on the horizon. There are now an increasing number of senior living residences and aging in place communities that are creating more welcoming and inclusive environments. More and more people realize that LGBTQIA+ cultural competency training for a medical, facility, and home care staff is key to developing affirming and inclusive care. On advocacy, we must continue to pressure federal, state, and local governments to include sexual orientation and gender identity protections in existing housing laws. Senior housing providers must be pushed to adopt anti-discrimination policies (SAGE LGBTQIA-friendly housing resources). On a broader level, the community’s unique needs need to be integrated into systems of care across the continuum so that services for older adults are assessed on their ability to be both welcoming for people who are older and who identify as LGBTQIA+. As we continue to evolve into a more inclusive society, it is past time to show our LGBTQIA+ elders who fought for equality the dignity and respect they deserve and acknowledge and affirm that their dreams for aging well matter.

This blog originally appeared on the HealthSense blog.

About the Author:  Anne C. Sansevero, RN, MA, GNP, CCM is the founder and CEO of HealthSense LLC, an Aging Life Care management consulting practice. She is a master’s prepared geriatric nurse practitioner, and a seasoned nursing professional with over 30 years of experience in the field. Anne has a sub-specialty in neurological disorders and is well versed in all aspects of geriatric nursing. She has particular expertise with communication disorders relating to stroke and dementia and has developed a number of innovative nursing assessment tools and standards to improve the nursing care for frail elders. Anne is a member of the Aging Life Care Association® (ALCA) and Fellow of the Aging Life Care Leadership Academy. She is currently serving on the board of the ALCA, and is Vice President of the New York Chapter. In addition, Anne is a member of the American Academy of Nurse Practitioners and the Nurse Practitioners of New York. Anne is a registered nurse, certified care manager, and a master’s prepared geriatric nurse practitioner.

“Born in Ireland, I come from a strong medical family of physicians and nurses. I was naturally drawn to a career in health care where you can make a real difference in the lives of others. In the 1980s, I was recruited for a nursing career opportunity in the United States and fell in love with the energy and optimism that is part of this country’s cultural DNA. In the acute care work setting, I became very attuned to how stressful hospitalization can be for older, frail adults. I found my calling as a nurse practitioner and Aging Life Care Professional while advocating for the elderly and working to improve their quality of life and to avoid hospitalizations. I have a deep appreciation for the wisdom and resilience that I see in my older clients and feel grateful to be able to contribute to helping them and their families lead happier lives.”

LGBTQ Care Managers in Care Management

lgbtq older adults empowermentWhile Aging Life Care Managers come from a variety of backgrounds and expertise, they all have high qualifications, certifications, and uphold ALCA’s Standards of Practice and Code of Ethics.

Founded in 1985 by a handful of geriatric care social workers in New York City, the organization has grown to be nationwide and include educated professionals experienced in any of several fields related to Aging Life Care management, including, but not limited to counseling, gerontology, mental health, nursing, occupational therapy, physical therapy, psychology, or social work with a specialized focus on issues related to aging and eldercare.

ALCA also aims to diversify membership by highlighting members not only in background, but in race, gender, and sexual orientation.

Here is one member’s account of her life as an active LGBTQ advocate, and her journey to Aging Life Care Management.

Personal Account

I grew up in a bi-racial household in the Washington D.C. area and I’ve been out as a lesbian since I was in my early twenties.

In my twenties, I was active in volunteer work in recreation for the handicapped. I was joined by Gallaudet students who were deaf helping blind children play beat ball. We also went to Tracks together to play volleyball and enjoyed really loud music (they could feel the vibrations). I would try to sign the words of the songs.

I also went to Act Out marches and had the pleasure of working at a Dupont Circle store.

After Hurricane Andrew I moved to St. Petersburg, FL in 1992. Here I worked hard to build friendships and community within my LGBTQ community.

I founded and ran a restaurant with a former partner. We served the LGBTQ community offering live music and drag shows on the weekends. We used the space when we were closed for P-FLAG meetings and LGBTQ youth meetings. We only lasted a couple years, lost more money than we made, but had so much fun. We ended our relationship as a couple, but we would both do it all again, no regrets.

I sang and played in duos and trios in coffee houses and a few LGBTQ bars. During the day I found myself working in healthcare because they were plentiful. I entered a new relationship with my now wife. We went to Tallahassee to protest the law against LGBTQ adoption in Florida and speak with state representatives.

After 5 years working in Oncology, I went to Massage school and became an LMT working for Chiropractors and Spa owners. Then back to school for nursing. A year out of school I landed my dream job as an LPN with hospice, I started part-time on call.

ALCA 2020 Board President Liz Barlowe was just starting her own care management company and was looking for part-time help. She put out feelers that reached me and, after repeated reminders, I reached back. I continued to work two other jobs: one in massage and for Hospice.

As I gained knowledge through Liz’s training and as her business grew, I had to make a choice. I gave up hospice but continued to work as a massage therapist while gaining experience as a care manager associate.

The time came where my services were needed full time in care management. I’ve worked for Barlowe & Associates for almost nine years and June marks five years full-time. My wife and I have been together for 21 years. She works for the city, which offered same-sex partner benefits before our marriage was legal. St. Petersburg provides great affordable benefits for us both.

Advocating Experiences

Cindy also writes about her experiences in advocating for LGBTQ Seniors in St. Petersburg:

A few years ago, I started attending our local Better Living for Seniors (BLS) committee meeting for LGBTQ elder issues. We met in the conference room of Pinellas County Area Agency on Aging. There were other care managers attending as well as an owner of a home care agency, an elder law attorney, an owner of a senior home fitness company, a representative from a local crematorium, and a marketer from a senior living community.

Some of us identified as part of the LGBTQ community, and some friends of the community. Working with our local Senior Center they organized a health and wellness fair held at the Senior center with free food and drinks, many health-related vendors with lots of swag to give away, free living-will legal assistance, speakers, and a trailer running on the big screen that showed still photos of historic moments and activists in the LGBTQ awareness movement.

The plan was to make it an annual event adding live music and food trucks the second year. The first-year turnout was low, but it was new, and trying to notify our target audience was challenging. I wasn’t able to attend the second year but that was the last one they held.

Afterward, I volunteered at the Pride BLS tent providing handouts (The LGBT Elder Initiative Resource Guide), printed for us by AAoA, some of which went to friends as many of them are older than me.

The next year I was asked to serve on an advisory board that had split from the BLS committee due to a group desire to provide direct services, which BLS was prohibited from doing. This group began meeting at Empath Health offices, which had a direct services division called Epic, and which provided services to our HIV+ community and those living with AIDS.

The plan was to develop a division under Epic to provide direct services to LGBTQ elders — all under the umbrella of Empath Health — which encompasses our Suncoast Hospice. There were grants to apply for as funding was needed.

One of the first big projects was a showing of the film Gen Silent, for which we had to gain permission and pay. There were screenings in St. Petersburg as well as Gulfport FL in 2019. A volunteer call program was started to call and check in with LGBTQ seniors. This has remained and been a main source of outreach during the pandemic. I am no longer active in Epic Generations as my work in care management extends into after-hours and weekends.

I will say – it is amazing to look back and see ideas become tangible organizations that serve an underserved population. I am proud of my efforts and our work and I hope more people will be inspired to recognize, and take care of, our LGBTQ older adults.

About the Author: Cindy Hillman, Aging Life Care™ Associate at Barlowe & Associates has over a decade of experience navigating the resources and choices for seniors living in Pinellas County. Since 2000 Cindy has been working in healthcare primarily with older adults. She is a nurse and massage therapist and worked with specialists in the fields of Cancer, Blood disorders, Lung disease, and Chiropractic. Cindy has volunteered for CASA, The American Cancer Society, the Federal Prison at Coleman (Women’s Education Department) and Hospice of the FL Suncoast. She sits on the Advisory Board for Epic Generations.

Equity in Aging for LGBT Older Adults: A Review of the Past Ten Years and Progress for the Future

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//// By: Denny Chan And Natalie Kean, Originally published in the May-June 2021 issue of Generations Today by the American Society on Aging. ////

Ten years ago, Justice in Aging and SAGE wrote a report, “Stories from the Field,” on discrimination LGBT older adults experience in nursing homes. We heard reports of staff at these facilities refusing to help gay men bathe or to use transgender residents’ correct pronouns. This was in addition to discriminatory policies that made it difficult or even impossible for transgender people to get Medicare coverage for prostate and pelvic exams and bans on gay men of any age donating blood. LGBT older adults living in the community have faced other barriers such as discriminatory housing policies.

While new legal protections have been enacted since we published our report, unfortunately many LGBT older adults are still discriminated against and many more continue to live in fear that they will be.  As we documented in our special report on the legal needs of low-income LGBT older adults, the effects of discrimination and poverty among LGBT individuals compound over the lifetime, such that many experience increased levels of poverty and other barriers as they age.

This is especially true for LGBT older adults of color and individuals with limited income and wealth, including immigrants who, depending upon their immigration status and length or residency, may be barred from Medicare, Medicaid, Social Security, Supplemental Security Income and nutrition and housing assistance. These immigrants can end up with little or no choice in providers of health, long-term care and social services.

Foundation for Equal Rights for LGBT Older Adults

In the past ten years, we have seen a foundation being built for equal rights and nondiscrimination for LGBT older adults, and it is worth celebrating. The courts have decided cases establishing landmark anti-discrimination protections and expanding rights for LGBT individuals, including older adults.

The U.S. Supreme Court’s decisions striking down federal and state bans on same-sex marriages in U.S. v. Windsor and Obergefell v. Hodges allowed Social Security spousal and survivor’s benefits to go to LGBT couples and their families and opened the door for Justice in Aging and others to fight against the Social Security Administration’s other discriminatory policies. These decisions continue to help LGBT older adults get relief from benefits miscalculations that occurred even before the cases were decided.

‘THE 2016 HEALTH CARE RIGHTS LAW REGULATIONS ALSO RECOGNIZED INTERSECTIONAL DISCRIMINATION.’

Most recently, in Bostock v. Clayton County, the Supreme Court decided that the prohibition of discrimination in employment “on the basis of sex” in Title VII of the Civil Rights Act of 1964 also prohibits discrimination against individuals based on their sexual orientation or gender identity.

The Affordable Care Act included the Health Care Rights Law (Section 1557). It is the only federal law that bans discrimination on the basis of race, color, national origin, sex, age and disability specifically in health programs and activities that receive federal financial assistance, and it is the first federal law to prohibit sex discrimination in healthcare.

The implementing regulations, finalized in 2016, interpreted Section 1557’s ban on sex discrimination to include prohibitions on discrimination on the basis of sex stereotyping and gender identity. The 2016 Health Care Rights Law regulations also recognized intersectional discrimination, providing a new avenue to challenge discrimination under Section 1557 for LGBT older adults who experience discrimination in federal health programs and activities on the basis of multiple identities, such as gender identity, age and race.

The Push Back Against Progress

Unfortunately, the past ten years have also been met with persistent attempts to attack the rights of the LGBT community. In 2020, the Trump Administration eliminated these explicit protections for LGBT individuals in the Health Care Rights Law regulations. These rollbacks, along with removal of protections for limited English proficient older adults, undermine LGBT older adults’ rights and make it harder to seek redress from healthcare discrimination in court.

Other regulatory actions, such as expanding grounds for health and social services providers to deny services to LGBT individuals and proposals to permit homeless shelters to discriminate against transgender individuals when assigning housing, demonstrated the severe and ongoing hostility toward LGBT individuals.

The attacks continued in court, as well. Last fall the Supreme Court heard oral arguments in Fulton v. City of Philadelphia, a case challenging Philadelphia’s decision to end its contract with a social services agency that refused to certify same-sex couples as foster parents. And the effects of intersectional discrimination against LGBT individuals play out in the COVID-19 pandemic, too, with LGBT people of color twice as likely as white non-LGBT people to report testing positive for COVID-19.

That is why Justice in Aging has joined other advocacy partners in actions to undo these harmful changes and repair the damaging effects of this discrimination. We are challenging the rollbacks to the Health Care Rights Law in court and joined a brief with many other aging advocacy organizations in Fulton.

LEGAL PROHIBITIONS ON DISCRIMINATION CAN BE ADVANCED QUICKLY THROUGH LAWS AND POLICIES—BUT, IT TAKES THOSE POLICIES BEING IMPLEMENTED AND LITIGATED TO MAKE PROTECTIONS REAL.

President Biden signed an executive order extending housing anti-discrimination protections to LGBT individuals, and recently withdrew the prior administration’s proposal to permit discrimination against transgender individuals in housing programs and homeless shelters. The Biden administration also announced that it will interpret and enforce Section 1557 prohibitions on discrimination in healthcare based on sex to include sexual orientation and gender identity, consistent with the Supreme Court’s ruling in Bostock.

Congress has taken up the Equality Act, which builds on Bostock to codify that the prohibition on sex discrimination in major civil rights laws includes sexual orientation and gender identity. The bill, which has passed the House, would directly impact LGBT older adults by expanding the definition of sex discrimination in the Civil Rights Act of 1964, the Fair Housing Act, the Equal Credit Opportunity Act and other laws.

The Equality Act would also expand the definition of “public accommodations” to include healthcare and legal services providers, banks, transportation, food banks and online retailers and service providers, among other businesses and locations. This expanded definition would increase anti-discrimination protections for LGBT older adults, not only on the basis of sexual orientation and gender identity, but also race, national origin, including limited English proficiency, and other protected classes.

If it becomes law, the Equality Act will strengthen LGBT older adults’ rights to access healthcare, housing, long-term services and supports and other aging services without discrimination. Ongoing discrimination also is why Justice in Aging has been championing principles for equitable COVID-19 vaccine distribution to ensure that older adults who are most at-risk do not encounter barriers to getting the vaccine.

As the past 10 years have shown us, legal prohibitions on discrimination can be advanced rather quickly through laws and policies—and this is certainly important. However, it often takes those policies being implemented and litigated to make the protections real. We are encouraged by the Biden administration and Congress taking steps to put more anti-discrimination and equity-centered policies on the books.

Justice in Aging will continue to fight for these types of protections and make sure that those that are passed are robustly implemented so that LGBT older adults, especially those who have been harmed the most by systemic discrimination, can age in dignity and justice.

Denny Chan is directing attorney of Equity Advocacy in Justice in Aging’s (JIA) Los Angeles office and Natalie Kean is senior staff attorney in JIA’s Washington, DC office.