“The experience of living with Parkinson’s disease (PD) is unique to each individual. We really strive to listen to our patients, caregivers, families, providers and the community in creating an all-encompassing supportive services program that helps people to adapt and live well with Parkinson’s across the continuum and at all stages of the disease,” said Amy Lemen, MA, LCSW. “One size does not fit all in Parkinson’s care. We’re here for our patients and families and doing whatever we can to develop new models of care that have meaning.”
Amy is a clinical social worker who manages the NYU Clinical Social Work and Social Work Education for Parkinson’s Program. She built the program with guidance from data from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of PD, with more than 9,000 participants enrolled.
The NYU program offers a multitude of PD-tailored support services, all coordinated by the social work team from the Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence.
“Over the years, I’ve worked to structure the PD social work program using the Parkinson’s Foundation Center of Excellence network model,” Amy said. “In a similar fashion, our social work program works to set a standard of excellence in clinical care, research, outreach and education. Just as centers must meet criteria, I want our social work program to achieve excellence and leadership across the board.”
Amy manages the nationally recognized program that aims to expand the role of social workers beyond the clinic into the community and the home. At NYU, a social worker is not only an expert PD clinical care provider, but an educational leader, community ambassador and home advocate.
“This program has allowed me to meet the needs of our patients and families in a variety of ways throughout all Parkinson’s stages,” said Deanna Rayment, LMSW, social worker and program coordinator. “We emphasize the individual, and not just the disease. Whether it's providing supportive counseling, connecting patients to exercise classes, education or support groups through our Parkinson's Wellness Program or providing home visits, we have the ability to meet the complex needs of our patients and families in a variety of ways.”
Social workers help people with Parkinson’s and their families navigate some of the most challenging aspects of PD. They provide practical and emotional social support, facilitate communication, and help alleviate anxiety, depression and stigma. They play an integral role in the comprehensive care team, working collaboratively with the neurologist to help patients live their best possible life with Parkinson’s.
NYU social work-coordinated programs
- Helping patients, couples, caregivers and families adapt during all PD stages and with its most challenging aspects through comprehensive clinical assessment, supportive counseling, PD education and resource referral
- Development of therapeutic, psychosocial support groups for patients and caregivers
- Coordination of the Edmond J. Safra Parkinson’s Wellness Program-NYC in collaboration with JCC Manhattan
- Coordination of the Edmond J. Safra Interdisciplinary Home Visit Program for Advanced Parkinson’s
- Assistance with clinical studies, such as the newest art and singing therapy studies
- Offering professional education programs for community providers and for social work students
Support in community outreach
Social work is at the heart of the center’s mission to think past the clinic walls in the development of programs. Since its inception, the NYU program, which receives funding through the Parkinson's Foundation and the Edmond J. Safra Philanthropic Foundation, began evolving its community expansion efforts.
Amy was hired in 2007 to help launch social work services at the newly founded NYU center and manage the Edmond J. Safra Parkinson’s Wellness Program-NYC, a medically-connected, community-based partnership with Jewish Community Center (JCC) Manhattan. NYU social workers and the JCC team work together on a daily basis to develop a comprehensive approach to PD wellness through PD-tailored exercise classes (based off of Parkinson’s Outcomes Project exercise studies), support groups and Parkinson’s educational events, all open to the community.
On a weekly basis, up to 95 people with PD utilize this unique program and see real differences in their PD symptoms — both physical and mental. Caregivers are welcome, too. The Edmond J. Safra National Parkinson’s Wellness Initiative, based on the NY program, is now available in Boston, Chicago, Tampa and Washington, D.C., in collaboration with the Parkinson’s Foundation.
This summer and fall, the Institute is collaborating with the Steinhardt School of Education at NYU and NYU Voice Center to launch PD-tailored art therapy and singing clinical studies, taking place at JCC Manhattan. Both clinical studies will involve a variety of measures, including imaging, to determine if art and singing therapy can result in a change in brain structure and function, as well as improvement in the behavioral and psychosocial aspects of Parkinson’s. Studies like these are what pave the way for new Parkinson’s breakthroughs.
“Our program participants are always excited for any opportunity to further Parkinson’s research,” Amy said. “They let us know they wanted art and singing therapy classes, and now we are hosting clinical studies that we hope will develop into best practice programs. Sometimes listening is the best medicine, as well as a spark for creativity.”
Support in the home
The PD social work program was making strides in the community and at the clinic, but the patients that kept Amy and the NYU team up at night were the ones less and less able to make it to clinic.
“Sometimes people can feel isolated as they’re adapting to Parkinson’s changes. Since we don’t want anyone to fall through the cracks in care our team decided to develop an in-home program,” Amy said. “The wellness program and the home visit program really show the heart and soul who we are as a team at NYU.”
The Edmond J. Safra Interdisciplinary Home Visit Program for Advanced Parkinson’s is the center’s latest frontier of social work-coordinated services. The first-of-its-kind program provides a specialized, team-based approach, where the clinic experience is brought to the home. That includes a clinical fellow or neurologist, nurse, social worker and researcher.
“Having a clinical social worker on the home visit team is essential because we know as PD progresses a patient’s psychosocial needs become more predominant, and they need help staying connected and engaged in their care at every stage. This program also allows us to help caregivers,” Amy said.
The home program not only extends the center’s ability to provide comprehensive care, but also serves as a unique training opportunity for fellows, residents, medical students, researchers and social work interns.
Training future Parkinson’s social work leaders
The NYU Parkinson’s social work program has thought of everything: utilizing clinical study data, designing an at-home program and community outreach. What else? The program aims for perfection in training the next generation of Parkinson’s support leaders through its NYU MSW Educational Program for Parkinson’s.
Amy collaborates with colleagues at the NYU Silver School of Social Work with this program. Over the course of the academic year, interns become part of the multidisciplinary team, working closely with patients, care partners and families while learning how to help people adapt to and manage a progressive, neurodegenerative disease.
“The internship program helps us train future social workers and gets people interested in working with Parkinson’s and neurodegenerative illness, but also it helps us build capacity for everything we want to be doing,” Amy said. “I don’t know where we would be without our social work interns.”
Kate Shanahan, MSW candidate and current social work intern, works closely with patients, care partners and families. She is making a difference every day. “I see the significance of a real interdisciplinary approach that truly works with patients and caregivers,” Kate said. “Helping patients navigate all aspects of their diagnosis and access resources so they can live their best life with PD can be challenging. Since Parkinson’s progression can vary from individual to individual, social work will continue to play a crucial role over time.”