Special Projects Fund Archives - New York Health Foundation

Elevating the Voices of People with Long COVID and Chronic Illness

While many try to move on from the COVID-19 pandemic, the virus lingers on for some. Some people who had COVID developed a chronic disorder that affects the entire body, known as Long COVID. According to CDC data, roughly 17 million adults and 1 million children experienced Long COVID in 2022. With more than 200 identified symptoms, Long COVID remains poorly understood and overlooked in medicine.

Recognizing the urgent need for more information, NYHealth grantee Long COVID Justice (LCJ) is increasing medical information about Long COVID and advocating for people experiencing Long COVID and other chronic illnesses.

LCJ used NYHealth funding to conduct a needs assessment of people with Long COVID focused on what is often overlooked by public institutions: social needs, care needs, and stigma. LCJ partnered with Long COVID advocacy groups, grassroots organizations, clinics, and providers to conduct outreach to people living with Long COVID, focusing on those disproportionately affected and whose voices have largely been left out, including people living with HIV/AIDS, young people living with chronic illnesses, and gender non-conforming people.

“This needs assessment project is also an organizing project; we’re building relationships with and amongst community-based organizations and patient populations,” said Emi Kane, LCJ Co-Director. “We’re creating a really solid foundation for future work.”

“We are also very involved in elevating patients’ voices and narrative change so that people get a better understanding of the lived experience of people living with Long COVID and associated conditions,” explained Gabriel San Emeterio, LCJ Senior Fellow and Co-Founder.

Participants reported health care providers sometimes overlooked COVID as a significant health event, resulting in underreporting on electronic medical records and affecting care and treatment. By providing additional information and resources to providers and patients, LCJ hopes to improve care plans and broaden community awareness for patients.

LCJ developed a fact sheet with basic information about COVID and Long COVID that helps people with a misunderstood condition navigate health care systems and advocate for themselves. Additionally, LCJ partnered with The Sick Times to help increase awareness about COVID and Long COVID. The partnership used evidence-based resources and reporting to address misinformation in the community.

LCJ is hopeful that Long COVID will attract more resources amid the growing call for a comprehensive understanding of what patients with complex chronic illnesses are experiencing. “There is a long history of [complex chronic illnesses] being underfunded, misunderstood, and overlooked. We are using the latest crisis to draw attention to much larger problems that have existed in society for a long time,” said San Emeterio.

To continue building momentum, LCJ is launching an action plan with policy recommendations and outlines for implementation by engaging community networks. The action plan will include a publicly available, easy-to-use tool that provides suggestions for improving care systems to support people living with Long COVID.

Learn more about Long COVID Justice’s efforts here.

Taking Action to Support Youth Mental Health

NYHealth grantees like the New York School-Based Health Foundation and Organización Latino Americana of Eastern Long Island are working to support the mental health needs of students in communities across New York State.

The COVID-19 pandemic exacerbated existing mental health challenges and highlighted the urgency to increase access to comprehensive mental health services. Findings from an NYHealth data brief showed that while rates of poor mental health among New Yorkers fluctuated throughout the pandemic, more than three in ten (31.5%) adult New Yorkers reported experiencing depression and/or anxiety in March 2023.

Young people’s mental health may be even more precarious. According to a CDC report, the rates of youth who persistently felt sad or hopeless increased substantially between 2011 and 2021, from 28% to 42%.

For newly arrived New Yorkers and those who don’t speak English, language barriers and difficulties navigating complex health systems can compound young people’s symptoms of anxiety, depression, or post-traumatic stress.

School-Based Mental Health Services

The New York School-Based Health Foundation used NYHealth funding to offer technical assistance and develop resources to support in-school mental health services in schools throughout the State. It assisted schools with implementing events like health fairs and screening programs, as well as meetings on topics such as stress management, weight loss, and self-esteem. It also provided staff training on evidence-based mental health support services. Across the two-year project, 1,600 students were screened for behavioral health symptoms, and more than 350 students enrolled in treatment, with the majority receiving care at school-based health centers.

As part of the project, school-based health centers created support groups across various themes. One school-based health center aimed to meet the needs of students who’ve newly arrived in New York.

“Every month, we still get kids who are new to the country; 40% of the kids in the school are newcomers. They’re not alone [in being] the only kid in school that’s new and speaks a different language,” noted a school-based health center social worker. The support group provided age-appropriate social activities, including painting, board games, and vision-board making, to ease anxiety about school. It became a safe space for students to bond over their experiences. “We used this game called My Journey into the U.S., and it allowed for the kids to share their experience when they got here.” She added that addressing the mental health challenges of the school community also means meeting basic needs, including stocking up on toiletries and extra clothing for students who need them. School-based health centers have been playing that crucial role. “Everyone’s trying to survive. You can’t just leave a student who’s struggling without resources and support, but I find that the kids are so resilient.”

Based on the learnings from this project, the New York School-Based Health Foundation has launched a two-year grant program to support school-based health centers in serving students in the downstate region who have newly arrived in New York and are experiencing migration and settlement transitions.

Bilingual Mental Health Support on Long Island

Thousands of Latinos live in the area year-round working in essential industries like landscaping, farming, and hospitality. Many are immigrants, face food and housing insecurity, and have limited access to health and social services. In some school districts in the region, up to 40% of students are Latino, and up to 60% live below the federal poverty level.

Organización Latino Americana (OLA) of Eastern Long Island used its NYHealth grant to expand student access to crisis counseling and mental health services in English and Spanish. OLA’s Youth Connect hosted workshops for Eastern Long Island school districts and provided an estimated 2,000 middle and high school students with access to a confidential bilingual crisis helpline.

Common themes shared with Youth Connect’s anonymous hotline included family tensions, being overwhelmed at school, depression, and anxiety. But there were also concerns about immigration stressors, which underscored the need for trauma-informed approaches.

“They miss the family that they left behind,” explained Adriana Cardona, a Youth Connect crisis counselor. OLA also emphasized the importance of incorporating language justice and ensuring culturally accessible programming. “When they’re in emergent situations, especially for youth and teens, [things] can be misconstrued in some way, or they can’t fully express themselves,” another OLA staff member added. Counselors who speak the same language and understand their culture help young people address their mental health needs while honoring the complex emotions related to assimilation. OLA continues to provide workshops and access to a confidential bilingual crisis helpline. Learn more about OLA’s services here.

Rebuilding a Good Life

Pazir* was ripped from the life he knew when the Taliban bombed the Kabul International Airport in Afghanistan on August 26, 2021.

Pazir had spent two years working at the U.S. Embassy in Kabul. The day of the bombing, everything changed. Pazir lost a close friend and was himself hospitalized for 25 days.

Pazir grew up in Kabul surrounded by a strong support system of family and friends. At 24 years old, he had already started a small business—a bakery—that had turned into a restaurant. “We used to make homemade, delicious food,” he reminisced. Pazir studied public law and had plans in place to grow and expand his business.

When the Taliban attacked the airport, Pazir fought back. “We fought for the country, we fought for the people. We fought for the commitment that we had to the United States government.” While the rest of this team left the country, Pazir was chosen to as part of a trusted team to stay and help the U.S. Marine Corps as an interpreter. After the Taliban took over, an injured Pazir fled to the States, leaving behind the life he knew and loved. He arrived in Fort Dix in New Jersey and spent time in refugee camps before ending up in Buffalo, NY. He found housing and employment within a few days of arriving in Buffalo, working as a cashier in a grocery store.

But the physical and mental trauma of the attack and his sudden relocation weighed on Pazir. “It’s really hard to leave your home where you grew up; where you made yourself; where you made your career; where you established a good life—like, a really good life.” Torn from his life and career, Pazir struggled with mental health issues as well as physical ones. Despite growing up in a culture where speaking to a psychologist is laden with stigma, Pazir recognized that he needed to seek help. He sought out a counselor at Jewish Family Services of Western New York (JFS), who helped him unpack the trauma that had been plaguing him since the explosion. Together, they worked through his disturbing memories and Pazir rediscovered his goals, vision, and direction in life.

“I was totally lost before engaging in this program. Having a good person—a good counselor—like [in] the program is life-saving, honestly.”

More than a year later, Pazir started working at JFS as an intensive case manager and refugee specialist. He hopes to help other refugees like himself work through trauma and settle into a healthy life in New York.

*Name changed to protect privacy

JFS provides complex medical, psychological, immigration, and legal services to immigrants, refugees, and asylum-seekers. Under an NYHealth grant, it provided access to mental health services that often fall outside the boundaries of resettlement services. It worked to deliver and connect refugees to emergency mental health services and nonclinical support groups, as well as help them recognize the signs of mental health issues.

Refugees Get Off to a New Start with Health Care Services

Approximately 3,000–5,000 refugees per year have resettled in New York State, the majority in the upstate region.

After a lengthy vetting process, refugees approved to enter the United States are resettled where other relatives are already living or placed in areas based on the best match between a community’s resources and a refugee’s needs.

Although refugees come from different parts of the world, many experience similar challenges as they seek adequate medical care in their new communities. These challenges are often exacerbated by their exposure to torture, terrorism, poverty, and lengthy stays in refugee camps, as well as cultural shock and language barriers. In the last decade, upstate New York has been home to health care clinics that have either shut their doors to new refugee patients or have closed down altogether because of the financial burden of treating these patients.

However, two NYHealth grantees have found a way to overcome these challenges: Rochester General Hospital (RGH), which devised a financially sustainable refugee health care model, and the Jewish Family Service of Buffalo & Erie County, which launched the Western New York Center for Survivors of Torture, the first of its kind in upstate New York.

Below are the stories of resettled refugees and their families who received quality health care services from these organizations, helping them rebuild their lives.

Som Gurung* resettled in Rochester in 2015. He was a victim of ethnic cleansing in Bhutan in the early 1990s and fled to Nepal, where he lived in a refugee camp for 21 years. Som entered the camp alone at the age of 13 and has spent the majority of his life behind its barbwire confines. At the camp, he suffered from severe weight loss, but the camp doctor treated him only with vitamins.

After resettlement in Rochester, Som met with staff members from RGH’s refugee health care program, and it was quickly discovered that he had juvenile diabetes that was never treated. Som entered into immediate treatment and was introduced to his new doctor. Over a period of several weeks, his diabetes was controlled and he returned to a normal weight.

Initially, Som’s care was delivered in Nepali and all his prescriptions and patient information were written in Nepali so he could understand. Since his arrival, he has learned English and is now in a local community college learning to be a nurse. Without the intervention of the program, Som would have continued to suffer from his untreated diabetes and would eventually have ended up in the hospital with serious complications and expensive care as a result.

To date, the Rochester refugee health care program has entered more than 6,000 newly arrived refugees into primary care services—each one with a similar story. Through the efforts of the program, thousands of refugees have been able to access appropriate health care while the community has benefited from decreased health care costs through the elimination of unnecessary emergency department visits and hospitalizations.

Mohammed Hussan* is an Arabic-speaking refugee from Iraq; because of his Christian faith, he was jailed and beaten in his home country. He fled the Gulf War with his wife and two children and was housed in a temporary refugee camp in Jordan. Mohammed could never return to Iraq, and Jordanian authorities wouldn’t allow him to gain citizenship there. An intelligent, hardworking man who had worked as a carpenter in Iraq, Mohammed and his family arrived in Rochester in 2014.

Upon arrival, they spoke no English and knew no one here. Mohammed also suffered from post-traumatic stress disorder (PTSD). Despite their best efforts to survive in their new city, Mohammed and his family were isolated and had no understanding of how to access resources for help.

Through RGH’s regional refugee health care program, Mohammed and his family received immediate access to care with a culturally sensitive doctor. The site where he received care had appropriate interpreters and support personnel who could help Mohammed beyond the delivery of medical care. His family was assigned an Iraqi peer counselor through the clinic, and they were taught how to increase their independence in accessing health care and how to use the bus route to the clinic. The family’s medical issues were appropriately addressed, and Mohammed gained access to mental health services.

The peer counselor connected the family with an Arabic support group, English classes, and job training at a local nonprofit educational center. Mohammed’s wife was connected with a person in the children’s school system who spoke Arabic and helped the children enroll in school. A few months after arrival, Mohammed was able to find a job as a carpenter—enabling the family to get off public assistance. Mohammed’s therapy sessions helped him overcome some of the symptoms of PTSD, and the family is getting regular preventive care check-ups and has developed a trusting relationship with their new doctor.

Without the interventions of RGH’s refugee health care program, Mohammed and his family would have been at high risk for multiple emergency department and urgent care visits, as well as not getting connected with the right resources to successfully resettle in Rochester. Thanks to the program’s interventions, the family is living independently as productive citizens in Rochester.

Mr. Pha* knew no one in the United States when he arrived in Rochester in 2009 as a refugee from Burma. But within his first week here, he was able to find a place to stay, receive a health screening, and get school placement assistance with help from RGH and the hospital’s local refugee resettlement partners.

Just one year earlier, the only health care option for refugees like Mr. Pha was through costly trips to the emergency department; the last two clinics that had been serving refugees in Rochester had closed their doors. Instead, Mr. Pha was able to access primary care services through RGH’s refugee health care program.

Through this program, when Mr. Pha arrived in Rochester, he underwent an initial health assessment, was assigned a primary care provider, received health-related materials in Burmese, and had access to a translator when meeting with doctors. In addition to receiving health care services, Mr. Pha took a course through RGH designed to help refugees develop their interpreting skills. Mr. Pha now is in sound health and has full-time job, and he remains committed to giving back by staying connected with the Rochester refugee community. He helps fellow refugees navigate some of the American systems that may be unfamiliar or confusing, such as bus and other transportation schedules and public school enrollment for their children.

“I now have opportunity and hope here. It’s a better life,” said Mr. Pha.

Ms. E*, a 38-year-old refugee referred to the Center by one of its local partners. Attacked by a militant group in her home country of the Congo because of her beliefs, she was kidnapped, raped, brutally tortured, and mutilated. As a result, Ms. E suffers severe symptoms of post-traumatic stress disorder, has hearing problems, and experiences difficulties in walking and with her circulation.

Referred to the Center by one of its local partners, Ms. E began working with a care coordination team in October 2014. She was involved in creating her own case plan, which included stabilizing housing, accessing health care, and seeking rehabilitative activities. The Center’s staff has assisted her in finding appropriate health care providers; conducted medical and psychological forensic evaluations; coordinated with her immigration lawyers; and provided emergency assistance as needed, such as food cards and transportation.

After extensive counseling and assistance from the Center, Ms. E has begun feeling better medically. She has placed her trust in the Center and its staff, and also has begun to smile and laugh again. She now volunteers by tending to the Center’s garden, which has helped her break down fear and allowed her to express feelings about her new life in the United States.

Mr. B*, now 36 years old, had been a successful professional in Nigeria, but because of his ethnicity, he was extorted by a criminal group. When he would not pay the extortion, he was kidnapped, placed in a government-run prison, and beaten by prison guards. As a result, he suffers from anxiety and is afraid to be in contact with anyone from his community.

Referred to the Center, Mr. B was involved in creating his case plan, determining the direction and order in which services are provided to him. Since he started at the Center, he has received many services to help him rebuild his life, including medical and psychological forensic evaluations; health services; assistance with employment authorization and employment services; psycho-education on the effects of torture and trauma; training on relaxation techniques and coping skill mechanisms; rental assistance; referrals for prenatal care and WIC for his wife; and linkage with a religious organization so he can practice his faith.

As a result, Mr. B has developed an increased interest in giving back and has begun looking for ways to help survivors. He is able to function in a wide range of activities to support his family and have a relatively safe and stable life.

Read more about the development, implementation, and replication of RGH’s innovative health care model for newly arrived refugees in the NYHealth report, “Opening Doors: A Sustainable Refugee Health Care Model.” Watch a video about the model’s impact on newly resettled refugees, along with the community and health benefits it has generated.

*Name changed or hidden to protect privacy

Vulnerable Children Receive Vital Oral Health Services

WIC Smiles

With support from an NYHealth grant, Albany Medical Center has co-located pediatricians at upstate WIC sites to provide oral health services to Medicaid-eligible preschool-age children in areas where access to dental care is limited. At the sites, mothers receiving WIC benefits also are able to bring their infants and children (up to five years old) to the on-site pediatrician for a basic dental screening and a fluoride varnish application—an important tool in cavity prevention.

Noah’s mother, Becky, first learned about the oral health services during a routine nutrition appointment at her WIC site in downtown Albany. Becky’s WIC counselor told her about the free fluoride varnish and asked if she wanted to make an appointment for her son. One week later, Noah saw the on-site pediatrician and underwent the procedure, which was over in less than a minute. Without the WIC Smiles program, “I wouldn’t have known the varnish was in existence, let alone helpful,” said Becky.

Although Noah didn’t have any discernible tooth problems, he had not received any dental care up until his WIC visit. “It’s good to know he has that extra level of protection now, and it’s a good precedent for kids that sets them up for future dental success,” said Becky.

The vision behind WIC Smiles is to reach children at high risk for oral disease before the onset of cavities or tooth decay. “Prevention is much easier because once they have established tooth disease, it’s hard to reverse,” said Melinda Clark, a pediatrician with Albany Medical Center and initiator of WIC Smiles. “The earlier and more aggressive you are on the prevention side, you can make a huge impact in lessening the risk for oral disease in these children down the road.”

The program, which is sustained through Medicaid reimbursement, also helps lower health care spending in the long run: delivering preventive services to the youngest and most vulnerable patients lessens the need for costlier (and more painful) dental procedures later on.

Pediatricians at the WIC sites see infants and very young children whose teeth are just beginning to emerge. In many cases, these patients do not have regular access to dental care because few private dentists accept Medicaid-enrolled children. The pediatricians also are trained to provide families with oral health education, recognize oral health problems in children, and refer patients to a network of dental providers for additional treatment.

WIC Smiles has been established in four upstate counties—Albany, Cortland, Saratoga, and Tioga—and Albany Medical Center is in talks with four other counties to add sites.

…and Beyond

Albany Medical Center now also has an opportunity to move beyond WIC sites and have an even greater impact on children’s oral health in New York State, thanks to two major policy shifts in 2014. First, the U.S. Preventive Services Task Force (USPSTF)—an authority on prevention and evidence-based medicine—released recommendations that primary care providers apply fluoride varnish to the teeth of all infants and children up to the age of five. The American Academy of Pediatrics then endorsed the USPSTF directives, releasing guidelines for all pediatricians to perform not only fluoride varnishing but also oral hygiene and dietary counseling as preventive primary care services.

As a result, pediatricians across all payers—not just those accepting Medicaid—can provide the varnish and other oral preventive services to their patients and be reimbursed. “This is now a mandate,” said Dr. Clarke. “You will get paid to do this, and it’s good for children’s health.”

Dr. Clarke recognized the policy changes as a critical moment to move beyond the WIC sites and make a statewide push for a wider standard of care for children’s oral health. She approached NYHealth staff with the idea to broaden the grant’s original scope of work to include two new key elements: (1) educating pediatricians and other health care professionals across the State on the guidelines and insurance billing changes and (2) training those providers to deliver oral health services.

With NYHealth’s go-ahead, Albany Medical Center now is working with Community Health Care Association of New York State (CHCANYS) and other statewide and regional primary care provider networks to train providers on how to properly apply fluoride varnish and integrate oral health services into primary care settings—especially in rural health areas where such services have been scant.

While WIC Smiles has improved the oral health of Noah and other Medicaid-enrolled children like him, Albany Medical Center’s collaboration with NYHealth to expand its grant activities is helping many more children across the State obtain access to proven preventive services.

Getting Parents Information on Environmental Health Hazards in New York City Public Schools

In early 2011, several students at Bronx elementary school P.S. 51 started reporting to the school nurse that they had headaches.

Some P.S. 51 parents had noticed many assorted illnesses among children at the school over the years, including stomach pain and coughing, but no one knew what to make of the trend. In addition, construction had recently started to build 10 new high-rise condominiums on the same block, and some parents and teachers found the noise and dust were making classrooms unusable or causing breathing problems. Parents and teachers questioned whether the school would be relocated so that students and staff would not have to come to this unsafe school environment every day.

The school building’s lease was scheduled to expire that same year, and the renewal process required an assessment of toxins on the property. The Department of Education (DOE) began to perform air tests at the school after hours, starting in January of 2011. The testing revealed dangerous levels of toxins, well in excess of State standards, which were likely left over from chemicals used in the school building’s past as a lamp factory. The factory had left behind trichloroethene, or TCE, a chemical which can cause cancer and other long-term health effects. The DOE had not tested the air when it first leased the building 20 years earlier, exposing students and school staff to these toxins daily for years.

The DOE did not tell the school principal, teachers, or parents about the ongoing environmental testing or its results for six months, while school remained in session. By the time the community learned about the air testing and toxicity, it was summer, when the DOE chose a new site for the school and released a report about the environmental hazards in the original building. The reports were too technical for community members to understand, and parents were left confused, fearing for their kids’ health and safety.

Marisol Carrero’s son, Brandon, attended P.S. 51 before and after the school was relocated. “In October, we were still trying to figure out what the environmental reports meant” about P.S. 51, says Ms. Carrero. “The DOE didn’t explain to us what the reports were saying or what they meant for us—what the toxin was, or what the health concerns would be for our kids.”

“DOE was under no obligation to inform the school community about being in the process of doing environmental testing, so they didn’t,” says Allison Manuel, Lead Community Organizer at Northwest Bronx Community and Clergy Coalition (NWBCCC), a community group that many P.S. 51 parents joined. “You don’t want to do multiple tests as if you can test the problem away before you inform the people who are directly impacted by these toxins.”

While the P.S. 51 community struggled to get information and understand how to protect their kids’ health, New York City’s School Construction Authority was implementing an aggressive plan to relieve overcrowding in public schools by establishing 56 new school buildings over 5 years. Because of the scarcity of affordable, clean land in New York City, schools are often sited on property likely to be contaminated with toxins, like the former lamp factory that became P.S. 51. Because of these past uses, the school sites could be contaminated with toxins such as lead, arsenic, and a range of carcinogenic compounds.

Communities across New York City continue to face difficulties establishing safe and healthy school environments, including issues with expansion, relocation, construction, and toxic lighting. For the previous five years, New York Lawyers for the Public Interest (NYLPI) had been working with community boards at a number of New York City schools to empower parents, community members, and elected officials to get information and ensure school buildings are safe, healthy learning environments. However, the scale of the problem meant there was more work to be done, and NYLPI had reached only a fraction of the contaminated sites proposed to become schools.

With support from NYHealth, NYLPI expanded its work on healthy schools and reached more districts where new school sites were being considered, including P.S. 51, to provide assistance and helpful materials. NYLPI instituted ongoing trainings for community boards, parents, teachers, elected officials, and other school community members to help them learn to navigate the complex school siting system and advocate for the information they need. To reach more schools, NYLPI also developed and distributed a series of practical tool kits that explain how community members can get involved in safe and healthy school siting, construction, and renovation practices.

NYLPI staff met with Ms. Carrero, NWBCCC, and other P.S. 51 parents and community members to help them advocate for a healthy school environment and identify ways to get involved in the school siting and environmental testing processes. NYLPI provided the P.S. 51 community with educational materials, including the tool kits, and helped decode the environmental reports so that community members could better understand what toxins were in the air at P.S. 51 and what the health implications could be for students and teachers.

“This [original location] was not a building that should have ever been used as a school,” says Mark Ladov, Staff Attorney at NYLPI. “We wanted to help provide parents with a realistic sense of the level of health risks.”

New York City Council members subsequently reached out to NYLPI for recommendations on best practices for healthy school siting, construction, and renovation. NYLPI provided Council members with the educational materials it had developed under its NYHealth-funded project, including the tool kits designed to enable community involvement. In early 2015, the Council passed new legislation, signed into law by Mayor Bill de Blasio, designed to prevent future situations like P.S. 51. The law requires the DOE to inform parents and school employees within seven days of any environmental test results that show potential health threats in public schools or proposed sites. It also requires the DOE to publish all environmental inspections to its website, and to publish biannual reports for the City Council and the public summarizing the test results of every environmental inspection and site assessment, as well as plans to mitigate risks.

“I’ve spoken to so many parents, and I can’t tell you how relieved they are that something like this law exists out there,” says Ms. Carrero.

“With such a lack of transparent information, it left room for fear to fill the vacuum,” says Mr. Ladov. “Parents were rightfully concerned. An important part of our role [at NYLPI] was to be on their side, and take this energy and frustration to help the next set of parents down the line.”

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Funding Area: Special Projects Fund