FROM THE STACKS
EDITOR’S NOTE: There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!
Seeking Advisory Board Members: Organ Transplant Equity Study
A new study funded by the National Institute of Child Health and Human Development is exploring how disability-based discrimination may affect organ transplant access for people with intellectual or developmental disabilities (IDD). We are seeking people with IDD with lived experience with the organ transplant process, or their family members, to join a paid advisory board. This includes: (1) adults with IDD who need or received an organ transplant, or (2) family members of adults or children with IDD who need or received an organ transplant. Members will meet virtually 2–4 times a year and receive $500 annually. Diverse voices and experiences are encouraged.
Interested? Contact Dr. Brittany Hand at Brittany.hand@osumc.edu
(HELEN Editor-in-chief’s Note: May was Older Americans Month, but at HELEN we think every month is the right month to celebrate aging!_
Older Americans Month: A Call to Celebrate, Not Sideline, Aging
(McKnights Long Term Care-5/28/2025)
By Charles De Vilmorin
May is Older Americans Month — a time designated to honor the contributions, wisdom, and strength of older adults. But for the senior living and long-term care industry, this month is more than a celebration. It’s a strategic opportunity to fight ageism, spotlight the value of aging, and affirm the dignity of every older adult we serve.
As someone who has long championed person-directed living and fought to reframe how society views aging, my deepest wish is simple yet profound: that all older adults are seen, respected, heard and treated with dignity — not just this month but every day. Because when we see older adults as whole people, with rich histories and continued potential, we don’t just fight ageism — we chip away at the social isolation that too often accompanies it.
Here are a few ways senior living can seize this moment:
Elevate resident voices
Start by knowing more residents through the typical life story process — potentially using technology to then empower teams and family members to build person-directed engagement.
Communities can also invite residents to tell their stories through art, writing, interviews, or public events. Share these narratives widely.
When we center older adults as storytellers and culture-bearers, we help the world see the beauty and relevance of aging. It is important to take opportunities to celebrate and spotlight these stories.
For instance, some communities feature the artworks of their residents on the walls throughout their communities or invite residents to participate in painting a mural in the community. Then they invite families, friends and others to come in and enjoy these creations.
Train against ageism — internally and externally
Host ageism awareness workshops for staff and families. Partner with schools and community groups to run intergenerational education programs. Combatting bias starts with naming it. Break stereotypes about aging.
During the pandemic, for example, a senior community in New York recreated famous album covers of artists like David Bowie, Johnny Cash, Adele and Elvis with their residents. Other organizations have held fashion shows with their residents as models. Some communities have programs where residents advise or mentor people in the community at-large about business and strategic planning for their companies and careers.
These types of efforts show that older people, even those with illnesses and disabilities, can still be fun and cool and still contribute to the world around them. We partner every year with Forest Hills of DC for the Old People Are Cool Walk and Roll, a fun and empowering way to celebrate older adults.
Redesign programming to reflect personhood
Let’s go beyond bingo. Tailor programs that reflect residents’ individual passions, goals, and identities, from gardening to coding, jazz to activism. Engagement isn’t fluff — it’s fuel for purpose and well-being. Know residents and what their lives were like before they entered your community.
For instance, Vista on 5th in New York City is home to many former Broadway performers. They might play piano or other instruments and serenade people in the lobby, or you might find them “jamming” with others. One resident who was a professional artist taught art classes in the community.
Engage the public with a bold message about aging
Use social media, newsletters and local events to celebrate aging. Run campaigns that spotlight “what’s great about growing older”— not just the challenges, but the power, insight, and humor that come with it.
Instead of using stock photos in ads and posts, consider featuring real people (with their written permission, of course). Show real ways older adults are engaging, sharing, making a difference, and creating, connecting, and celebrating life.
Rethink how we use language
Words matter. Say “older adults,” not “the elderly.” Say “people living with dementia,” not “demented.” Create a culture of respect in every interaction.
It’s useful to remind staff and others that nursing home and other long-term care community residents have had colorful, important lives and experienced or witnessed historical events. Side-by-side photos of older adults and their younger selves can showcase the journey of aging and what residents experienced and accomplished along the way.
Lead by example
Every time we create a community where older adults are engaged, known and respected, we model what a better elderhood can look like — for society at large and for ourselves in the future. We need to engage our residents, invite them to share their stories, listen to their wishes, needs and concerns, and show them that we care not only about their health but about their wellbeing and happiness.
This month, and every month, let’s go beyond themed activities and commemorative slogans. Let’s honor Older Americans Month by committing to a bigger truth: Aging is not a problem to be solved — it’s a gift to be shared. When we choose to see older adults for who they really are, we don’t just fight ageism — we build a world where everyone belongs. This is the world I want to live in. Let’s make it happen.
Charles de Vilmorin is the General Manager, Linked Senior with Lifeloop.
The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.
Have a column idea? See our submission guidelines here.
ANCOR Launches New Direct Support Professional Ambassador Program
On the heels of the exciting announcement at ANCOR Connect ’25 last month, ANCOR is pleased to share that they are now accepting applications for our brand-new DSP Ambassador program!
In the face of longstanding workforce challenges, which will only be exacerbated if federal lawmakers are successful in slashing the federal Medicaid program, the direct support workforce demands more visibility now than ever before. That's why ANCOR has designed this new initiative that aims to strengthen the ability of leading DSPs to tell their stories and lend their voices to our advocacy and public awareness efforts.
The DSP Ambassador program will invite a cohort of DSPs from around the country to participate in an eight-month intensive training and professional development program. Professional development opportunities will take place both virtually and in-person at ANCOR’s 2025 Policy Summit & Hill Day, where DSPs will join hundreds of other I/DD professionals on Capitol Hill to educate our federal lawmakers on the need to strengthen the services you deliver.
Why Apply?
Participants in the DSP Ambassador program will enjoy access to a series of trainings that aim to position them as more effective spokespeople when engaging with the press, lawmakers and members of the community. Spokesperson development training will be supplemented with additional professional development opportunities. In turn, ANCOR will call on DSPs to share their stories and add their perspective to outreach to the media and lawmakers when advocating on behalf of the direct support workforce.
Eligibility & How to Apply
We are seeking applications from DSPs who are passionate about working in this field and advocating to strengthen the direct support workforce. Therefore, there is no minimum number of years of experience required, but applicants should have enough experience in the field that they have developed a perspective on the challenges facing DSPs.
Additionally, applicants would ideally see themselves staying in this field in the foreseeable future, either in a direct support role or in another role working in service of a community-based provider organization.
Applicants must be able to:
Demonstrate institutional support for their participation in the program by obtaining a letter of support from their agency’s executive director/chief executive officer or their designee.
Attend ANCOR’s 2025 Policy Summit & Hill Day (September 7-9, 2025).
Be willing and available to share their perspectives as a DSP when the opportunity arises, including by working with ANCOR to respond to inquiries from press.
The deadline to apply for this opportunity is 11:59 pm PDT on Thursday, July 3, 2025.
Mrs. Willie Mae Goodman is Presented With the First-ever "Willie Mae Goodman Family Advocacy Award"
Click here to see event photos
Dear Friends and Colleagues,
As a member of the disabilities’ community, you know what dark images the Willowbrook State School conjures in New York State, as well as the incredible progress we have made since its closure. On May 2, I was honored to join self-advocates, family members, OPWDD providers, government leaders and renowned journalist Geraldo Rivera on the College of Staten Island’s campus to honor the 50th Anniversary of the signing of the Willowbrook Consent Judgement, which occurred on April 30, 1975.
The Consent Judgement, which was followed by the closing of the school, was truly revolutionary in not only what it accomplished for people with disabilities in New York State, but for what it sparked as a worldwide disability rights movement. The progress we have made in terms of the treatment, support, and inclusion of people with developmental disabilities in New York is due to the dedicated advocacy of so many people over the past five decades. We were so fortunate to have two of those trailblazing advocates responsible for the closure of Willowbrook with us to celebrate and receive overdue accolades for their bravery. Mrs. Willie Mae Goodman, a fierce family advocate fifty years ago – and still going strong today – was awarded by OPWDD with the inaugural “Willie Mae Goodman Family Advocacy Award” to honor her tireless advocacy on behalf of her daughter Margaret and all of New York’s children with developmental disabilities. Bernard Carabello, one of New York’s first vocal self-advocates and former resident of Willowbrook, who bravely let journalist Geraldo Rivera into the building to document the atrocities, received OPWDD’s inaugural “Bernard Carabello Self-Advocacy Award” for being someone unafraid to speak truth to power. Bernard and Geraldo reiterated their first-hand accounts during the event and their lifelong relationship that has developed since that time, and caught up with each other in a lively conversation on stage – you can watch the entire program here: bit.ly/WCD50thEventVideo
As I said during my remarks, this anniversary was a momentous occasion honoring the decades of progress made for and by people with developmental disabilities and their families. Being able to hear first-hand from the people who were personally and professionally involved in this historic social justice movement was both educating and inspiring.
At OPWDD we know our work will never end, but events like this one energize me and renew my commitment to helping people with developmental disabilities have an even more inclusive future. We are all advocates, and this celebration was an affirmation of our power to make change.
Sincerely,
Willow Baer
Acting Commissioner