Frank Stoutenburgh of Patchogue practices walking up stairs during a physical therapy...

Frank Stoutenburgh of Patchogue practices walking up stairs during a physical therapy session with physical therapist Lynn Savino at Long Island Select Healthcare in Central Islip. Credit: Newsday/Steve Pfost

    Frank Stoutenburgh carefully climbed the stairs at his physical therapy session, using both hands to clasp onto a rail for support and taking one step at a time.

    "It's all about the technique," said an upbeat Stoutenburgh, who has cerebral palsy and uses a walker to get around. 

    Climbing the handful of steps in about 20 seconds represents a milestone for the 31-year-old after a fall at his Patchogue home left him with a sprained lower back and rattled his confidence in his abilities.

    WHAT TO KNOW

    • Although it serves the wider population, Long Island Select Healthcare's Suffolk clinics work with many people with disabilities. LISH, as the nonprofit is known, is a federally qualified health center.
    • There is not a broad base of caregivers with long-term, in-depth experience serving this community, a LISH official said. That is paired with the patients being more prone to medical complications and issues communicating with medical providers. 
    • In a survey of more than 700 U.S. physicians, about 40% of them felt very confident about their ability to provide equal care to people with and without disabilities, according to the research published in Health Affairs, a journal of health policy.

    He credits the hands-on staff at Long Island Select Healthcare, which specializes in care for people with disabilities, for aiding in his recovery and burgeoning independence.

    "They were that catalyst that was able to push me forward to recognize my own self-worth and my own strength as a person to overcome, not only my fear [of falling], but my disability," Stoutenburgh said.

    Although it serves the wider population, Long Island Select Healthcare's Suffolk clinics work with many people with disabilities. LISH, as the nonprofit is known, is a federally qualified health center, meaning it's federally funded and serves underserved areas and populations, officials said.

    Medical staff at LISH facilities in Smithtown, Riverhead, Central Islip and other Suffolk locations work to overcome transportation, communication and other barriers to provide low-cost care to thousands of people with disabilities that range from intellectual or developmental to those that are physical in nature.

    Barriers to health care

    John Lessard, board president at LISH, says ensuring that people with disabilities have access to health care is a real problem. 

    There is not a broad base of caregivers with long-term, in-depth experience serving this community, he said. That is paired with the patients being more prone to medical complications and issues communicating with health care providers. 

    "People with intellectual and developmental disabilities very often have challenges associated with helping a caregiver understand exactly what's wrong," he said.

    In a survey of more than 700 physicians across the country, about 40% of them felt very confident about their ability to provide equal care to people with and without disabilities, according to the research published in Health Affairs, a journal of health policy. 

    Moreover, roughly 57% of physicians strongly agreed in the survey that they embraced people within the disabled community in their practices, the research said. 

    Kathleen McGoldrick, a clinical associate professor at Stony Brook University who teaches several classes in disability studies, said oftentimes physicians worked within insurance guidelines that limited time with patients. 

    “That creates the need for shorter visits, less time with patients, and you're working with a population of patients who require more time in order to have their needs met,” she said. 

    Scott Landes, a Syracuse University associate professor whose specialties include the sociology of disability, said one of the more significant factors in people with intellectual and developmental disabilities accessing health care was the medical community being unprepared and undertrained to treat members of this community. 

    Dr. Gail Fraser-Farmer sees about 20 patients a day at...

    Dr. Gail Fraser-Farmer sees about 20 patients a day at Long Island Select Healthcare, some of whom can't speak or explain what hurts. Credit: Newsday/Steve Pfost

    Even when a person with a disability finds a physician, he said, there is often diagnostic overshadowing — the idea that no matter the symptom, the medical provider blames the person’s disability. 

    “The doctors simply expect disabled people to have worse health outcomes, period,” he said, noting: “That's just a false equivalence because they're continuing to say, ‘OK, disability means poor health’ when that's not necessarily the case.”

    Although many people with disabilities are on Medicaid, they are less likely in New York to have mammograms or cervical screenings, according to recent data. People with disabilities are more likely to have routine checkups, according to the Centers for Disease Control and Prevention.

    While roughly 70% of New Yorkers without disabilities said in 2020 that they saw a dentist in the last year, about 56% of residents with cognitive disabilities and around 50% of those with a mobility disability accessed that care, the CDC said. 

    At the health center, a team of providers, including physical therapists, dentists, OB/GYNs and neurologists work to close those gaps, according to Audrey Smith, CEO of the organization.

    The day before a patient’s appointment, medical staff look over their file to ensure they understand the person’s medical history.

    "The benefit of our type of providers is that we can dig a little bit deeper and understand some of the underlying issues that somebody may not be able to verbalize. And then we're able to treat the true cause," Smith said.

    LISH at turning point

    Still, Smith, who took the helm at LISH in January, said the organization was at a turning point. They have brought on several new executive staff members. And, eventually, they hope to upgrade several of their six facilities.

    LISH was formed by combining three not-for-profit agencies: the Developmental Disabilities Institute, Family Residences and Essential Enterprises, and the United Cerebral Palsy Association of Greater Suffolk. 

    The combined organization, which started operating in 2016, can provide care to a larger swath of people with intellectual and developmental disabilities, health officials said.

    Today, dentistry remains in high demand, staff said. Many of its patients live various places, including group homes, with relatives, or independently. 

    The Central Islip location features a mock apartment where people learn how to avoid falling out of bed, navigate the shower, cook and clean. 

    Soon after the pandemic forced shutdown to avoid spreading the coronavirus, the health center started deploying virtual care management. Tablets were placed at group homes, and patients there could have their blood pressure checked and have other chronic conditions managed, alleviating some concerns about transportation to the clinics and helping to catch illnesses before they land a patient in a hospital.

    Patients’ accessibility needs 

    On an average day, Dr. Gail Fraser-Farmer sees roughly 20 patients at LISH, conducting annual checkups and other examinations of patients who sometimes can’t speak or say what hurts. 

    In treating this population, she said she must be malleable about her patients’ accessibility needs and get to know them to gain their trust.

    She said there was immense satisfaction in treating disabled people for roughly 18 years and seeing the quality of health care grow for that community.

    "The biggest satisfaction to me is that these patients are being treated like anyone else," she said, noting "they're getting their colonoscopy."

    Steven Asofsky, a rehab supervisor at LISH, said he had seen people with feeding tubes eating a full diet, and people in wheelchairs who were now using walkers. 

    “It's just nice to be able to touch somebody and to improve their quality of life,” he said.

    For Stoutenburgh, who also uses LISH for his primary care and dentistry, the help he has gotten at the facility has helped him immensely. He's beginning to use his crutches more. He hopes to move out from his father’s house and get his own place.

    Working with people at Long Island Select Healthcare has taught him valuable lessons, he said.

    “Just because … you have a physical limitation — or whatever limitation it may be — it does not mean that you cannot move forward and enable yourself to be a stronger and better person,” he said.

    He added: “You just have to have the right people in your corner to make you realize that.”

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