New York’s Managed Long Term Care (MLTC) program provides or arranges for and coordinates both the health care and long term care needs of hundreds of thousands of vulnerable patients with complex health conditions. The following member* stories offer real examples about how MLTC plans support the health care needs of New York’s most vulnerable residents.
* Some names have been changed to protect member privacy
Robert
Navigating life while dealing with developmental disabilities was something Robert and his family were managing. However, being diagnosed with a severe form of narcolepsy added new physical challenges and Robert needed more help.
That’s when they discovered the Managed Long Term Care program. Now Robert has a nurse, a case manager and others who monitor his medications and make sure he’s taking them, help him get to appointments, and assist him with day-to-day activities. His sister says the MLTC plan helps Robert manage his health and other concerns, which keeps his health from deteriorating and avoids major crises. All of this allows him to continue to live on his own, and Robert and his family are grateful for the support. As Robert says, “It really helps to have someone on your side. Without it, I think I would be lost.”
Jonathan
Many people think Managed Long-Term Care Plans (MLTCPs) only care for members who are 65 and over, but Jonathan – who at the age of 29 was a victim of a drive by shooting – tells a different story.
In an instant in 2005, he went from being an independent, fully employed father who loved playing catch with his son, to a quadriplegic, totally dependent on others for everything. Determined not to let his condition defeat him, after 5 months in rehab, Jonathan returned home and, with help from his social worker, Mona, began receiving home care services and support. In 2013, under new state regulations, he joined a MLTC plan – and was happy to learn Mona had also moved to the plan. Working together for close to two decades, the two have developed a strong bond. Mona is committed to making sure Jonathan receives the care and support necessary for him to remain safely at home. This includes two 12-hour shifts of home health aide support seven days a week, coordinating with his physicians to ensure prescriptions are filled and that he receives necessary care, and arranging for the medical equipment and supplies that Jonathan needs to live.
“Mona has been there for me. She’s always ensured that I receive the care and support necessary for me to remain safely at home. As a social worker, she makes it easy for me to discuss my emotions and feelings. Her advice has been invaluable. In fact, thanks to her guidance, I learned that my disability benefits also extended to my son, lifting a huge weight off my shoulders.”
Lauren
Lauren, 67, has some physical health issues, but her real challenges are related to mental health — specifically, she suffers from schizophrenia as well as substance abuse which has led to Methadone dependence.
When she first enrolled in her MLTC plan, the plan arranged for Lauren to receive personal assistance care under the Consumer Directed Personal Assistance Program. Unfortunately, issues related to her schizophrenia led her to be hospitalized for a month, and during that time she lost her housing. As a result, when it was time for her discharge, Lauren had no home to return to and the MLTC plan’s only choice was to find a nursing home placement for her. Unhappy at the nursing home, Lauren left the facility against medical orders with no place to live and no support system in place. Learning about this, her MLTC care management team sprang into action and was able to contact her. Lauren answered the call because she trusted her MLTC care team, but because she was disoriented, she couldn’t tell them where she was. Even after the team was able to locate Lauren, the cycle of hospitalizations and discharges without someplace to go continued, during which Lauren’s mental health status worsened and she told people she was hearing voices telling her to harm herself. Lauren’s MLTC care team never gave up , eventually contacting Lauren’s brother who agreed to have her live with him. With her living arrangements secure, Lauren’s plan scheduled a doctor’s visit for her, was able to reinstate home care and home nursing services, physical therapy, and is working to connect her with a psychiatrist. Her brother reports that Lauren is now doing well. She is stable, back on her medication and no longer hearing voices.
Harun
Harun was born in Egypt and emigrated to Brooklyn in the 1970s. Always a hard worker, suddenly about twelve years ago, a spinal cord injury – as the result of a tragic accident – left him as a quadriplegic who is totally dependent on others. Through his MLTC plan, Harun receives two 12-hour shifts of care, seven days a week.
Harun has come to rely on and trust his assessment nurse, Victoria, who works closely with Harun’s care manager and the entire interdisciplinary team. Because their relationship spans ten years, Victoria can quickly identify subtle changes in Harun’s health status and make recommendations for changes in his care or level of services to ensure his health and well-being are maintained. Both Harun and his daughter, who lives out of town, both say they can’t imagine where they’d be without his MLTC plan.
“Going from independent to completely dependent on others is beyond scary. I literally entrust Victoria with my quality of life, ability to remain safely in my home and candidly, my survival. The idea of putting my life in the hands of a stranger – who has never met me in person – is beyond horrifying.”
Margie
With more than 30 years of experience, Margie, a nurse with Nascentia Health, a managed long term care plan in Central New York, understands that calls about a patient needing immediate attention are not unusual. Then came the early morning call telling her that her mother had fallen and Margie’s role changed from nurse to daughter of a patient.
Her mom, Therese, was taken to the hospital. It was the height of the COVID pandemic. While being treated for the fall, Therese got sick. Margie describes the experience as an uphill battle, but after six months in three different institutions, Margie was finally able to bring her mom home to continue getting the care she needed. “There was always the understanding that I was going to bring her home.”
Margie credits Nascentia for providing access to care and services her mom needs delivered at home. Today, Therese is walking with a walker and using a speaking valve to help her talk. She and her husband play cards every day and the family has time to visit together.
It’s been a year since Margie brought Therese home and Margie says the care her mom receives is the reason she is still here, adding, “It’s this gift of time that I’ve been given.”
Nicola
At 102, Nicola has been a member of her Medicaid plan since 2007 when it was the Lombardi program – a predecessor of New York’s MLTC program. When Lombardi was being phased out in 2013, she made the decision to transition into her plan’s MLTC program because she loved her care management team and the services that were provided. She did not want to experience any changes or disruption then, and nearly 10 years later, she feels even more strongly about staying with the plan and the team she trusts.
Nicola suffers from numerous chronic conditions, including diabetes, high blood pressure and osteoarthritis. Her care manager ensures that she receives the services and support necessary and even connected Nicola with the Lighthouse for the Blind to further improve her quality of life.
In 2019, after a hospitalization, Nicola was transferred to a nursing home. She was very clear about her desire to return home. Her care management team listened and made it happen, arranging for round the clock care from a personal care worker, supplemented with bi-weekly visits from a registered nurse. Knowing that Nicola has no family, her care management team plays that role.
Legally blind – and with no family – Nicola relies completely on the care manager who has been by her side for the past 9 years.
Howard
Many believe MLTC plans are just for seniors, but they also care for members like Howard who joined his plan nearly 10 years ago at age 59. He suffers from numerous chronic disorders including diabetes, coronary artery disease, heart failure, and high blood pressure.
Over the years, Howard has had significant care needs. He had end-stage kidney disease but was lucky enough to receive a transplant. When as a result of diabetic ulcers Howard had three toes amputated, his physician prescribed home care and topical oxygen therapy for the wound. Because Howard’s care management team worked with his physician to make sure he received this life-altering treatment, both of his feet were saved. Howard is very appreciative of his care management team and how they have always advocated on his behalf, ensuring that he continues to receive the services and support he needs.
He is also exceedingly grateful for the uninterrupted care he has received during the pandemic, and the efforts of his care manager to supply Howard with masks, gloves, and a thermometer to monitor his health. When the COVID vaccine was approved, she provided information about its importance and safety, and arranged for Howard to be vaccinated. In the midst of the pandemic, Howard faced another challenge – his walker broke. Despite widespread disruption in business across the city, his care manager coordinated everything and got the walker fixed immediately. But it didn’t stop there. Understanding that a standard ambulette was too hard for Howard to navigate, his care manager advocated again to make sure his ambulette had a lift, so that it was easier for him to keep his doctor’s appointments.
Howard would be lost if he didn’t have his plan and the care manager who has not only been his champion – but who has literally helped make it possible for him to have two feet to stand on.
Mae
A critical component of Medicaid plans is the relationship between care manager and member. When the member only speaks a foreign language, in this case Cantonese, and their care manager can speak with them directly – without a translator – it often takes that bond to a very special level. That is certainly the case for Mae. She became a member of the Lombardi Program – a predecessor of New York’s MLTC program – in 2009 and, when the program ended in 2013, made the decision to transition to her plan’s managed long-term care program so that she could keep her personal care worker and care manager. That commitment has not changed.
At 96, Mae suffers from depression, chronic pain, arthritis, diabetes, and high blood pressure. She has had the same care manager supporting her with compassion and respect since 2009. Along the way, they built a strong relationship and her care manager earned her trust. During the past 13 years, Mae has relied on her care manager for more than coordination of services and emotional support. She has also played a critical role by helping with Medicaid recertifications.
Both Mae and her daughter, appreciate how easy it is to reach her care manager whenever they need assistance. They also look forward to her ongoing outreach to answer any questions they may have, provide education about the importance of vaccinations, eye exams and dental checkups as well as ensuring that these important doctor’s appointments are scheduled and kept. Most of all, Mae greatly values the comfort, familiarity and trust that comes from sharing a language, culture, and 13 years of working together.
Managed long term care provides tens of thousands of New Yorkers with care management teams they come to trust and rely on. The bond that is formed – especially for a 96-year-old member like Mae – is crucial to their physical and mental well-being.
Alex
Alex is 75 years old, lives in the Murray Hill section of NYC, is immunocompromised and suffers from a severe cardiac condition. He has been a member of his MLTC plan since 2016 and values the important role his care manager plays in his safety and wellbeing. As part of his care plan, Alex receives much needed assistance with activities of daily living from a personal care worker.
As someone who is severely immunocompromised, this became a real challenge for him during the initial phase of the pandemic. Exceedingly fearful about being exposed to COVID-19 by his personal care worker, Alex temporarily declined services. Knowing Alex well, his care management team immediately intervened, arranging for Meals on Wheels to ensure that Alex received proper nutrition and was able to maintain his strength. With education and support from his care manager, Alex became comfortable that COVID protocols were being observed and allowed personal care services to resume.
Alex faced another challenge in 2021 when he started to experience a rapid decline in his health that led to hospitalization. His care management team modified his care plan to ensure a safe transition home and provide the support needed to address his advancing chronic conditions, providing additional personal care hours and coordinating home care services. Because of the attention and care coordination provided by his MLTC plan, Alex’s condition improved and was stabilized and he has not experienced a single hospitalization in the past 9 months.
Alex is exceedingly grateful to his care management team that he trusts, knowing they were looking out for his needs when he couldn’t.
Galy
Galy, who is 72 and lives in Valley Stream, has a number of serious chronic conditions — high blood pressure, heart disease, a history of mini-strokes, and arthritis — that require her to have a personal care worker provide assistance with bathing, dressing and meals in order to remain safely in her home. Galy has been a member of her MLTC plan since 2018 and values the important role her care manager plays in her safety and wellbeing.
Shortly after enrolling in her plan, Galy required hospitalization. When it was time for her to be discharged, her care management team put a modified care plan in place to support a smooth transition home and arranging for physical therapy in addition to her personal care services. Because of the attention, coordination of care and modified care plan, her condition improved and Galy has not experienced any further hospitalizations.
Then COVID happened and, due to fears about being exposed, she temporarily declined services. Galy’s daughter was able to assist her mom and advise the care team if there was a change in her condition. The care management team more than doubled the frequency of their calls to make sure Galy had everything she needed. With the benefit of education from her personal physician and additional support from her MLTC plan, Galy was among the first to be vaccinated. To further reduce her concern about exposure, her MLTC also provided personal protective equipment along with her regular medical supplies.
Galy credits her MLTC and care manager with “making my life better.” Over the past four years, Galy has developed tremendous trust in her care manager and for her, that doesn’t come easily. She says her care manager is “the first person I turn to. I call him whenever I have questions and he is always helpful and so patient with me. He helps me a lot.”
Galy appreciates everything her MLTC plan and care manager do for her. She knows they play an important role in making it possible for her to remain in her home.
Mary
Mary, an 82-year-old who has multiple sclerosis, osteoporosis and asthma, requires assistance with toileting, taking medications, preparing meals and transportation to her medical appointments.
She’s been enrolled in a Medicaid health plan since 2013, which has provided her with personal care assistance services and durable medical equipment supplies so that she’s able to remain in her home, despite her health challenges. On the few occasions that Mary has needed to go to the hospital, her plan has made sure that the necessary in-home services are in place when she’s returned home, and was able to arrange for an in-home COVID vaccine and flu shot at the height of the pandemic.
As a result of her health plan, over the last eight years Mary has been able to remain at home and in her community.
Chet
Since enrolling in his MLTC plan in 2019, Chet, who is 59 years old and has multiple serious health conditions, says his health has been stable and his quality of life is improved. Dealing with bipolar disorder, hypertension, Type 2 diabetes, systemic Lupus and more, keeping everything in check is a group effort.
An interdisciplinary team including his MLTC plan, health home case manager and his family who are also closely involved with his care collaborate to provide care coordination that track and manage Chet’s health conditions. Chet is very satisfied with the coordination of care and services that keep him safe in his Brooklyn home and have allowed him to avoid hospitalizations related to his psychiatric and medical diagnoses.
Coordination of care and services such as home delivered meals ensures Chet’s needs are met and he can safely remain in the community.
Darnell
Darnell is 52 years old, lives in Manhattan and has been enrolled in his MLTC plan for five years. He suffers from Multiple Sclerosis and hypertension. During a regular monthly check in, his case manager asked how he was doing managing his blood pressure and Darnell reported he didn’t “have a machine.”
His case manager sprang into action and that week Darnell had a follow-up visit to his PCP and neurologist, with the plan highlighting the necessity of having monitoring equipment in the home. The same week, the equipment was delivered and now Darnell doesn’t need to guess what his blood pressure is.
Darnell relies on his managed long term care plan and his team to advocate for him and addresses his health care needs.
Mitch
At the age of 94, bed bound and with dementia and stage 4 chronic kidney disease, Mitch still lives in his home in the Bronx. This remains possible thanks to his MLTC plan where he’s been enrolled for four years.
After noticing muscle atrophy of his lower extremities, in December of 2021, his MLTC plan increased Mitch’s consumer directed personal assistant services to 84 hours per week. This allowed the option to perform transfers and repositioning in bed at least every two hours, preventing further development of pressure ulcers, which have now completely healed.
Mitch remains safely at home with his family with continued services from his MLTC plan.
Stan
A member of his MLTC plan for six years, Stan, who is 65 and lives in the Bronx, has multiple health conditions include anxiety, atherosclerotic heart disease, paranoid schizophrenia, neuromuscular dysfunction of his bladder, and vitamin deficiencies, among other things.
His plan oversees the coordination of Stan’s services and collaboration with his interdisciplinary team — including his health home and housing — to ensure his needs are being met in the community. During the COVID 19 pandemic, his MLTC plan made sure Stan received meals on wheels and support from his personal care assistant home attendant. With the support of his family, health home care team, and his MLTC plan, Stan has been able to successfully manage and control his schizophrenia, without the need for hospitalization, so he can reside in the community safely.
Stan says being a member of an MLTC plan has improved his quality of life in the community. He always expresses gratitude for calls from care management team members and says he feels as though he is speaking with friends.
Ralph
Concerned about his declining health and increased care needs, Ralph enrolled in an MLTC plan in May 2021. At 88 years old, Ralph and his wife live in East Setauket with very limited support at home and in the community.
His MLTC worked with consumer directed personal assistant services to identify someone within the family circle as an option to provide Ralph with assistance with activities of daily living such as bathing and dressing. The plan also made sure that Ralph receives ongoing continued care management services for disease management, instruction about his medication and ongoing support and education.
Being in an MLTC plan has given Ralph peace of mind and a sense of security. He feels he and his wife are safe in their home.
Pamela
Pamela was heathy and independent until contracting viral encephalitis a year ago, which left her with weakness, short term memory loss, and the inability to take care of herself and do basic tasks such as shopping, cooking and meal preparation, bathing and dressing.
She enrolled in an MLTC plan and received a personal care attendant whose services were a great support, allowing this 69 year old to remain in her Bay Shore home. Over time, Pamela continued to get confused and easily frustrated and repeatedly asked to change personal care attendants. Knowing Pamela needed to feel supported towards recovery, her MLTC care manager assisted in coordinating consumer directed personal assistant services that enabled her granddaughter to care for her. The care manager has also been instrumental in coordinating care for services through different programs to make sure Pamela has physical therapy, occupational therapy, and social work services.
The relationship that has been developed with Pamela and her family is crucial to providing the care she needs.
Eddie
Eddie has been enrolled in his MLTC plan for two years. He is 51 years old, lives in the Bronx and has been diagnosed as bipolar and has asthma.
Eddie says one of the biggest benefits of being enrolled in his MLTC plan is that he is assigned to a reliable and a dedicated care manager who is committed to assisting him and ensuring that his care needs are met and he remains safe in the community. Eddie says he is benefiting from the MLTC plan and is thankful for the coordination of community-based services.
As a satisfied MLTC plan member, Eddie says, “I am really thankful for my case manager who readily makes herself available, I feel as if I can call her anytime with any questions that I may have.”
Gladys
Though her name is Gladys, everyone calls her “Sunshine” because she keeps a positive attitude and makes people smile even during dark times like the coronavirus pandemic. At 79, Gladys lives in Brooklyn by herself and has been enrolled in her MLTC plan for almost three years.
Gladys suffers from COPD and is dependent on oxygen 24/7. She is also a breast cancer survivor, has diabetes, arthritis and has had COVID-19. In November 2020 when she had a delay in receiving her oxygen supply, her care manager made all necessary calls, kept Gladys updated with the progress, and made sure her oxygen needs were met without interruption.
She was admitted to the hospital in January 2021 and was there being treated for COVID-19 until March 2021. Her care management team was there to follow her health status during her transfer from the hospital to the rehabilitation center to home. To meet her healthcare needs her care plan was adjusted to ensure a level of care met her health care needs, providing her with all the necessary services to follow up care needed to keep her healthy and prevent any further complications. Gladys has not had any recent hospitalizations since and continues to receive case management, personal care services and care plan adjustments to meet her health care goals.
For a woman nicknamed Sunshine, her health plan helps protect her mental and physical wellbeing, ensuring she keep her positive attitude and a smile for everyone she meets.
