Edmeston, New York, October 2, 2024 … The Kennedy Willis Center on Down Syndrome has opened registration for its annual fall Lunch & Learn webinar series.  This year’s course, Navigating Changes of Life, will focus on helping people with intellectual disabilities cope with grief, loss, and other difficult transitions. The webinars will be held on four consecutive Wednesdays, Oct. 23 & 30, and Nov. 6 and 13, starting at noon. Registration information is at the Center’s website at kwcdownsyndrome.org.

 “People with intellectual and developmental disabilities experience loss in similar ways to you and I but can also face unique challenges of unrecognized or prolonged grief. This may result in complex reactions as they cope with different losses throughout their life,” said Brittany Goodrich, Director of the Kennedy Willis Center on Down Syndrome. “These losses are not just the deaths of people close to them, but can be smaller experiences such as adjustments to their daily routines, the loss of previously learned skills, changes to people filling volunteer or paid employment positions, or transitions to a new home or program that diminish connections with existing social supports.”

This webinar series will explore the components of the grief process and include age-appropriate strategies that support children, teens, and adults with intellectual and developmental disabilities through challenging life experiences. Arlen Grad Gaines and Linda Clark, expert presenters and career counselors, will share resources and inclusive, practical techniques that help build awareness and address the complicated impact of grief. Registered participants will receive the recorded webinar links, an electronic tool kit of resources, and a digital certificate for three Ongoing Professional Development Hours from the Center following the conclusion of the series.

The $30 registration fee covers all four webinar sessions. The webinars will be on the Zoom meeting platform and facilitated by E. Adel Herge, OTD/OTR/L, FAOTA, Jefferson Elder Care, Thomas Jefferson University, and Director Goodrich.

Featured Presenters Include:

Arlen Grad Gaines, MSW, LCSW-C, APHSW-C is the Director of Social Services with JSSA Hospice in Rockville, Maryland, where she leads the social work, chaplain, and volunteer teams, as well as the bereavement program. With nearly 20 years of experience in hospice social work, Ms. Gaines developed a specialization in supporting individuals with intellectual and developmental disabilities in their grieving processes. She is the co-author of the award-winning I Have a Question book series which addresses complicated topics for children, including those with developmental disabilities.

Linda Clark, LCSW, is a former bereavement counselor at Hospice and Palliative Care, Inc. in New Hartford, New York. Linda provided individual bereavement counseling and also facilitated bereavement groups for young widows, spousal loss, and adult parental loss. She has led workshops and community education on grief and loss and has shared her knowledge and experience with individuals, families, and the greater community for over 25 years. Linda’s youngest daughter, Theresa, has Down syndrome and lives in a supported apartment in upstate New York.

To learn more about the Kennedy Willis Center on Down Syndrome and its outreach initiatives, visit kwcdownsyndrome.org. The Center was established in 1996 at Pathfinder Village with a three-fold mission: to provide education opportunities for families and the community at large regarding best practices in developmental disabilities, to serve as an information and life planning resource, and to host and support studies by accredited research organizations related to Down syndrome and related disabilities.

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Pathfinder Village is an internationally respected livable community and services provider in upstate New York that was founded in 1980 to provide people with Down syndrome and related disabilities an independent, engaging, and fulfilling lifestyle. As it works to provide quality supports for older individuals, the Village also offers successful educational and pre-vocational services and community-based day service options. To learn more, please call (607) 965-8377, Monday through Friday, 8 a.m. to 4 p.m., visit pathfindervillage.org, or visit our social media on Facebook and Instagram.

The KWC ... reaching out throughout the world

Edmeston, New York, February 9, 2024 … The Kennedy Willis Center on Down Syndrome is pleased to announce an expanded partnership with LIFEPlan CCO NY and Advanced Care Alliance of New York (ACANY). Established in 1996 as a leading resource center in the areas of research, education, and life planning needs, the Kennedy Willis Center has spent the last decade advancing its knowledge and expertise in the areas of aging and dementia services for individuals with Down syndrome and other intellectual and developmental disabilities.

“We want to ensure the delivery of quality care across a person’s entire lifespan–but what we consistently hear from families and providers is the unfortunate gaps in available services and training programs that support age and cognitive-related changes for older populations. Establishing readily accessible resources and collaborating with leading provider organizations like LIFEPlan CCO and ACANY will reaffirm the commitment to comprehensive and long-term quality services for people and their caregivers,” said Brittany Goodrich, Kennedy Willis Center Director.

Through this partnership, the Center will work closely with LIFEPlan and ACANY, two of New York State’s largest Care Coordination Organizations who formed a strategic partnership in 2021 that allowed for the expansion of inclusive services to its members and families through a network of highly trained human service and healthcare professionals. Today their services support over 44,000 members across 45 counties in New York State.

"We recognize the importance of person-centered services and resources for individuals with intellectual and developmental disabilities,” said Nick Cappoletti, CEO at LIFEPlan CCO and ACANY. “By partnering with the Kennedy Willis Center, we can further expand and enhance our care management and clinical support to our members with Down syndrome and those who are experiencing age-related cognitive issues. LIFEPlan and ACA are committed to forming partnerships with experts to better serve our members and their families.”

Through the agreement, the Kennedy Willis Center’s staff will maintain a call center for families and direct care staff, participate in service plan meetings, conduct baseline dementia assessments, present specialty webinars, and regularly distribute newsletters and other educational materials. Working closely with LIFEPlan and ACANY’s leadership will facilitate an efficient and effective, person-centered process for assessments, referrals, and consultations.

“This collaboration is an exciting opportunity to extend the Center’s specialty services to individuals, families, and community-based service providers most in need across the Empire State. This partnership adds specialized tools for LIFEPlan and ACANY members and will help families and service providers navigate aging supports,” added Karen Knavel, Pathfinder Village’s President, and Chief Executive Officer.

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To learn more about the Kennedy Willis Center on Down Syndrome and its outreach initiatives, visit kwcdownsyndrome.org. The Center was established in 1996 at Pathfinder Village with a three-fold mission: to provide education opportunities for families and the community-at-large regarding best practices in developmental disabilities, to serve as an information and life planning resource, and to host and support studies by accredited research organizations related to Down syndrome and related disabilities.

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Pathfinder Village is an internationally respected livable community and services provider in upstate New York that was founded in 1980 to provide people with Down syndrome and related disabilities an independent, engaging, and fulfilling lifestyle. As it works to provide quality supports for older individuals, the Village also offers successful educational and pre-vocational services, and community-based day service options. To learn more, please call (607) 965-8377, Monday through Friday, 8 a.m. to 4 p.m., visit pathfindervillage.org, or visit our social media on Facebook and Instagram.

Edmeston, NY, October 5, 2023 … The Kennedy Willis Center on Down Syndrome at Pathfinder Village is hosting a four-part Lunch and Learn webinar series this autumn, Nurturing Your Best Self through Music, Art, Movement & Mindfulness. The noontime series will share useful strategies for families and direct support staff who care for older adults with Down syndrome, dementia, and other disabilities.

The series is part of the Center’s and Pathfinder Village’s observance of October as National Down Syndrome Awareness Month. October was first designated as a national observance by President George H.W. Bush in 1991 and has been recognized every year since. The month is focused on celebrating the abilities and accomplishments of people with Trisomy 21.

Series registration is $30 per attendee; online information and a registration link are at kwcdownsyndrome.org. The series will be facilitated by E. Adel Herge, OTD, OTR/L, FAOTA of Jefferson Elder Care, Thomas Jefferson University, Philadelphia, and Brittany Goodrich, Director of the Kennedy Willis Center, the research and advocacy arm of Pathfinder Village. For over four years, Jefferson Elder Care and the Kennedy Willis Center have collaborated on creating staff training modules, online content, and outreach programs to present best practices in aging for older adults with Down syndrome.

“People with Down syndrome are living longer than ever before, and the changes associated with aging may affect a person’s participation in activities that are important to them,” said Dr. Herge. “The cognitive and physical changes with aging and the onset of dementia make it particularly challenging for individuals to stay active and engaged.”

“Our noontime Lunch and Learn webinar series will explore the relationship of participating in meaningful activities with health and well-being,” added Director Goodrich. “Our knowledgeable presenters will discuss ways you may use music, art, movement and mindfulness to help the people you support stay active, involved in activities, and experience joy.”

The sessions will be on Wednesdays at 12 p.m. and will feature:

Oct. 25   Your Creative Self: The Value of Art, even if You're Not Artistic: Anne Dudley-Smith is the Gallery Director for The Arc Otsego's Main View Gallery, a studio that celebrates the creative powers and insights of individuals with intellectual disabilities. She will discuss how to structure art activities for individuals with developmental and intellectual disabilities and how to involve people in creative processes to achieve wellness goals.

Nov. 1   Fun Fitness Ideas for All Ages & Abilities: Zoe Curtis is an experienced group fitness instructor who specializes in POUND workouts, ZUMBA, and other health movement formats. She has coached for over 12 years in ways that allow people to enjoy movement, make exercise fun, and build their self-confidence while providing an inclusive atmosphere for people of all ages and abilities. She has led in-person and online classes for gyms, private groups, centers for people with disabilities, senior living communities, and substance addiction recovery centers.

Nov. 8   Discover Your Musical Joy: How Music Can Heal Us: Join acclaimed sound healer Jimbo Talbot in this session focused on facilitating transformative music and sound programs to promote health and wellness for people with disabilities. The founder of DrumQuest, Mr. Talbot has led drum circles at Pathfinder Village for over 10 years and offers a variety of programs to meet audience needs. He is a trained Remo Health Rhythms® facilitator, Village Music Circles® Global Drum Facilitator, a graduate of Music For People®, and a graduate of Ithaca College of Music.

Nov. 15   Being Mindful, Positive & Connected: The final webinar is a panel discussion by spiritual providers who have extensively worked with individuals with intellectual disabilities who are seeking advice on life's big issues such as loss, faith, and other topics. Our panel includes the Rev. Douglas Burleigh, Fly Creek, the chaplain at Pathfinder Village and Community Hospice of Albany; and Sr. Mary Veasy and Sr. Susan Lindinger, who provide pastoral care and counseling at Divine Providence Village, Springfield, Pa., a residential community that serves adult women with disabilities and dementia.

To learn more about the Kennedy Willis Center and its outreach initiatives, visit kwcdownsyndrome.org or https://pathfindervillage.org/innovation-kwc. The Center was established in 1996 with a three-fold mission: to provide education opportunities for families and the community at large regarding best practices in developmental disabilities, to serve as an information and life planning resource, and to host and support studies by accredited research organizations related to Down syndrome and related disabilities.

Edmeston, NY, May 5, 2023 … The Kennedy Willis Center on Down Syndrome at Pathfinder Village is hosting a four-part webinar series this June, Nurturing Your Best Self through Music, Art, Movement & Mindfulness. The series will share useful strategies for families and direct support staff who care for older adults with Down syndrome, dementia, and other disabilities.

Series registration is $30 per attendee; online information and a registration link are at kwcdownsyndrome.org. The series will be facilitated by E. Adel Herge, OTD, OTR/L, FAOTA of Jefferson Elder Care, Thomas Jefferson University, Philadelphia, Pa., and Brittany Goodrich, Director of the Kennedy Willis Center, the research and advocacy arm of Pathfinder Village. For over four years, Jefferson Elder Care and the Kennedy Willis Center have collaborated on creating staff training modules, online content, and outreach programs to present best practices in aging for older adults with Down syndrome.

“People with Down syndrome are living longer than ever before, and the changes associated with aging may affect a person’s participation in activities that are important to them,” said Dr. Herge. “The cognitive and physical changes with aging and the onset of dementia make it particularly challenging for individuals to stay active and engaged.”

“Our second annual webinar series will explore the relationship of participating in meaningful activities with health and well-being,” added Director Goodrich. “Our knowledgeable presenters will discuss ways you may use music, art, movement, and mindfulness to help the people you support to stay active, involved in activities, and experience joy.”

The sessions will be on Wednesday evenings at 6 p.m. and will feature:

June 7   Your Creative Self: The Value of Art, even if You're Not Artistic: Anne Dudley-Smith is the Gallery Director for The Arc Otsego's Main View Gallery, a studio that celebrates the creative powers and insights of individuals with intellectual disabilities. She will discuss how to structure art activities for individuals with developmental and intellectual disabilities and how to involve people in creative processes to achieve wellness goals.

June 14   Discover Your Musical Joy: How Music Can Heal Us: Join acclaimed sound healer Jimbo Talbot in this session focused on facilitating transformative music and sound programs to promote health and wellness for people with disabilities. The founder of DrumQuest, Mr. Talbot has led drum circles at Pathfinder Village for 10 years and offers a variety of programs to meet audience needs. He is a trained Remo Health Rhythms® facilitator, Village Music Circles® Global Drum Facilitator, a graduate of Music For People®, and a graduate of Ithaca College of Music.

June 21   Fun Fitness Ideas for All Ages & Abilities:   Zoe Curtis is an experienced group fitness instructor who specializes in POUND workouts, ZUMBA, and other health movement formats. She has coached for over 12 years in ways that allow people to enjoy movement, make exercise fun, and build their self-confidence while providing an inclusive atmosphere for people of all ages and abilities. She has led in-person and online classes for gyms, private groups, centers for people with disabilities, senior living communities, and substance addiction recovery centers.

June 28   Being Mindful, Positive & Connected: The final webinar is a panel discussion by spiritual providers who have extensively worked with individuals with intellectual disabilities who are seeking advice on life's big issues including loss, faith, and other topics. Our panel includes the Rev. Douglas Burleigh, Fly Creek, the chaplain at Pathfinder Village and Community Hospice of Albany; Sr. Mary Veasy and Sr. Susan Lindinger, who provide pastoral care and counseling at Divine Providence Village, Springfield, Pa., a residential community that serves adult women with disabilities and dementia.

To learn more about the Kennedy Willis Center and its training and outreach initiatives, visit kwcdownsyndrome.org. The Center was established in 1996 with a three-fold mission: to provide continuing education opportunities for families and the community at large regarding best practices in developmental disabilities, to serve as an information and life planning resource for those with a loved one with developmental disabilities, and to host and support studies by accredited research organizations related to Down syndrome and related disabilities.

Pathfinder Village is an internationally respected open-access livable community in upstate New York and was founded in 1980 to provide people living with Down syndrome and related disabilities an independent, engaging, and fulfilling lifestyle. As it works to provide quality supports for older individuals, the Village also offers successful educational and pre-vocational services, including its post-secondary transitional program, Otsego Academy, and its community-based day services option. To learn more, please call (607) 965-8377, Monday through Friday, 8 a.m. to 4 p.m., visit pathfindervillage.org, or visit our page on Facebook.