CEDARHURST, NY — For much of Cedarhurst resident Marc Berlin's childhood, his mother was the person who helped him navigate a world of doctors, hospitals and painful surgeries.
Born with cerebral palsy, Berlin underwent multiple orthopedic procedures while growing up on Long Island. His mother, Judith, was there through the treatments and the long recoveries that followed. Then, in December 2015, she received a devastating brain tumor diagnosis of her own.
"Being that she was my caregiver through all my surgical operations, it was very tough when she got the diagnosis," Berlin recalled.
Judith Berlin died in April 2017 at age 78. Marc's father, Frederick, a pediatric dentist, died seven months later.
The losses left Berlin struggling to find his footing. But they also helped shape a new direction for a man who had spent much of his life navigating the health care system.
Today, Berlin operates On The Marc Patient Advocacy Services, an independent practice helping older adults, people with disabilities and families coordinate medical care, address insurance problems and prepare for the challenges of aging.
His work brings together his professional experience in health care administration and his personal understanding of what it means to depend on others during a medical crisis.
Growing Up With Cerebral Palsy
Berlin grew up in the North Woodmere and Valley Stream area, the youngest of three children.
Cerebral palsy affected his mobility, and his childhood included physical therapy, orthopedic surgeries and experiences of being bullied or underestimated because of his disability.
In fifth grade, he underwent operations on both hips which led to a lengthy recovery and approximately two years of schooling at home. Later, while attending college, he underwent a leg-lengthening procedure that required an external fixation device.
He said the experiences gave him an early understanding of the physical and emotional demands of medical treatment. They also taught him the importance of being heard.
"I know what they're going through," Berlin said of people with disabilities. "I've been through people making fun. I've been through people thinking that you're not good enough."
Berlin earned an undergraduate degree from American University and a master's degree from George Washington University. He went on to work in health care administration, including human resources, provider credentialing and contracting.
Despite his education and professional experience, he said finding stable, full-time employment became difficult after losing a job in the health insurance industry.
"I started because I couldn't find full-time work," Berlin said of his decision to eventually establish his own advocacy practice.
His experience comes into focus during National Disability Employment Awareness Month, observed each October to recognize the contributions of workers with disabilities and promote employment opportunities. The U.S. Department of Labor's 2026 theme is "Celebrating Value and Talent."
Berlin said his disability has sometimes made him feel that he must work harder to demonstrate his professional abilities.
"I'm an independent contractor, and I have to prove myself to people that I'm worthy," he said.
About one in 10 Long Islanders has a disability, according to New York State health data based on 2020–2024 Census estimates. The rate was 9.4 percent in Nassau County and 10.5 percent in Suffolk County.
Berlin said he wants medical professionals and employers alike to look beyond assumptions about a person's disability.
"Look at the individual patient, not too much at their disability, but their ability," he said.
Finding His Way After Loss
When Berlin's mother became ill, the family's experience with health care took on a different meaning.
Judith had supported him through years of medical treatment. Now she was the patient, and Berlin saw how overwhelming a serious diagnosis could be for a family.
His father handled many of the decisions surrounding her care, but looking back, Berlin said he wishes he had played a greater role.
"I wish I would have spent more time with her and been more involved in her care," he said.
After losing both parents within seven months, Berlin struggled emotionally.
"I thought it could have been the end," he recalled.
He eventually found support through bereavement programs at the Friedberg Jewish Community Center in Oceanside. Gloria Lebeaux, the JCC's senior director of social work services, remembers Berlin during that period.
"He was very sad, and he was very lost," Lebeaux said. "He was very close to his parents. He was really looking for friends and for companions."
Lebeaux led bereavement groups for adults who had lost their parents. She said the participants formed close connections, and several members helped Berlin feel less alone.
The JCC became more than a place to process grief. Berlin began participating in programs, using the gym and volunteering, including in activities serving people with disabilities.
Lebeaux had known Berlin professionally before his parents' deaths.
About 15 years ago, while working at JASA, an organization serving older adults, she met him through a business that sold personal emergency-response devices.
She remembered him as kind, honest and attentive to older people. She said those qualities were present long before he became a patient advocate. What surprised her was how much his confidence and determination grew.
Over the years, she watched him become increasingly active in professional organizations, develop his advocacy practice and put himself in situations that once might have seemed intimidating.
"What I hadn't seen was this drive and determination," Lebeaux said. "He's willing to do things even if they're hard and scary, he just does them anyways."
Helping Long Islanders Navigate Care
Berlin began pursuing patient advocacy training around 2020 and 2021, and started taking clients around 2022. He now works primarily with older adults, adults with disabilities and families who need help coordinating care.
His services can include preparing for medical appointments, communicating with doctors, reviewing insurance problems, arranging home health services and helping families understand hospital discharge plans.
"We don't work for the hospital or the facility," Berlin said, distinguishing independent advocates from those employed by health care institutions.
Instead, Berlin works directly for the patients or families who hire him. Berlin estimated that he had worked with about 20 clients since launching the practice.
His services are privately paid, through hourly or monthly arrangements, and are not covered by health insurance.
Berlin is not a physician, attorney or financial planner, and said he refers clients to other professionals when their needs fall outside his role. The potential need for help navigating health care is substantial on Long Island.
More than 564,000 Nassau and Suffolk residents were age 65 or older in 2024, according to the U.S. Census Bureau's American Community Survey, representing about 19 percent of the region's population.
An analysis of the same year's Census household estimates indicates that nearly 118,000 Long Islanders age 65 and older lived alone — approximately 56,900 in Nassau County and 61,000 in Suffolk County.
Living alone can complicate situations involving medical emergencies, transportation, hospital discharges or difficult health care decisions.
Berlin works with some people he calls "solo agers," older adults who may not have spouses, children or relatives nearby to help them navigate those challenges.
He encourages clients to prepare before a crisis by keeping updated medication lists, identifying emergency contacts, considering medical-alert systems and arranging appropriate health care decision-making documents.
When Families Need Another Set of Hands
Berlin also works with families balancing careers, children and the care of aging relatives.
A 2024 AARP New York report found that among surveyed Long Island registered voters age 40 and older, 11 percent were currently caring for an aging loved one and another 31 percent had previously done so.
Among current and former caregivers surveyed, 77 percent reported emotional stress associated with caregiving responsibilities, while 76 percent said they had worked while providing care.
For families already stretched thin, Berlin said, tasks such as coordinating appointments, gathering medical records and following up with insurers can become overwhelming.
An independent advocate can help organize those responsibilities and make sure important questions are addressed, he said.
His advice to someone confronting a frightening diagnosis is to allow time to process the news before making decisions.
"Take a deep breath, sit down, let it digest," Berlin said. "Then go over resources and next steps with your family."
When relatives are unavailable, he encourages people to identify a trusted friend, advocate or other support person who can help them understand their options.
Planning for Independence
For many older adults, the goal is not simply getting through a medical crisis. It is maintaining control over how and where they live.
In AARP's Long Island survey, 96 percent of current and former caregivers said it was extremely or very important that care be available so their loved ones could remain in their own homes.
Berlin's work often involves coordinating the practical assistance that can make independent living possible, including home safety considerations, medical supplies and communication among providers.
But aging in place does not always mean remaining in the same house indefinitely, according to Tara Ballman, executive director of the National Aging in Place Council.
"Aging in place isn't necessarily in the home you've lived in your whole life," Ballman said.
It can also involve assisted living, memory care or other arrangements that better meet an older person's changing needs, she explained.
The important part, she said, is planning early enough to preserve meaningful choices.
"When you find yourself in a crisis situation, the number of options are so limited," Ballman said.
Her organization connects professionals across fields such as health care, housing, transportation and financial planning to help older adults make informed decisions.
The challenge is also visible in publicly supported services.
Suffolk County's Office for the Aging states that both its Expanded In-Home Services for the Elderly Program and Family Caregiver Support Program have waiting lists. The county does not publish the number of people waiting on the cited webpage.
Those government programs are separate from Berlin's privately paid advocacy services, but the waiting lists reflect some of the difficulties families can face when seeking assistance at home.
Recognition for Going the Extra Mile
Berlin serves as membership co-chair of the National Aging in Place Council's Long Island chapter, helping prospective members connect with the organization and encouraging existing members to remain involved.
Ballman said his responsibilities include contacting people interested in joining, coordinating membership inquiries and following up with members whose memberships have expired.
In April, Berlin received the council's 2026 Member of the Year award at its conference in Atlanta.
Ballman confirmed that the organization's board of directors selected him for the honor. At the time, the council had approximately 500 members nationally, she said.
"He is always responsive, always willing to help, always goes the extra mile," Ballman said.
She added that Berlin consistently keeps the needs of older adults in mind, not simply the interests of the organization.
When the award was announced, Berlin appeared genuinely surprised, Ballman recalled.
For someone who has spent years trying to establish himself professionally, the recognition represented an important milestone. Yet Berlin does not consider his work finished.
"I'm happy where I am. I know I can do more. I'm not there yet," he said.
He hopes to expand his client base, establish an office and reach more families who need help navigating complicated health care decisions.
The award also brought an unexpected moment of sadness.
His mother had been the person beside him through the most difficult medical experiences of his childhood. She supported him through surgeries, encouraged his ambitions and, as he put it, kept the family together.
When Berlin received the national recognition, his first instinct was to share the news with her.
"I wanted to call my mother," Berlin said, "which I couldn't do."
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