Down Syndrome Center hosts Guardianship & Health Care Issues Seminar

Life planning and establishing guardianship for those with developmental disabilities can be complicated, and the terms of such decisions may have far-reaching effects.  To assist families with these concerns, The Kennedy-Willis Center on Down Syndrome at Pathfinder Village hosted a workshop presented by the New York State Commission on Quality Care and Advocacy for Persons with Disabilities last Friday, March 26.

"Guardianship and Healthcare Issues for People with Special Needs" featured legal experts from the state Office of Mental Retardation and Developmental Disabilities (OMRDD), NYSARC, and the state Commission on Quality Care and Advocacy for Persons with Disabilities.  The workshop offered participants information to establish advance directives, such as guardianship, living wills, health care proxies, and powers of attorney.  An emphasis was placed on the rights of individuals, and how guardianship and end-of-life decisions can best be implemented under current statutes in New York state.

Featured presenters included Patricia W. Johnson, Esq., the assistant counsel for the state’s Commission on Quality of Care; Paul R. Kietzman, Esq., general counsel for the NYSARC, the state’s largest private service provider for people with developmental disabilities; and William Combes, A.C.S.W., the state director of the programs for Protection and Advocacy for Persons with Developmental Disabilties/Traumatic Brain Injury through the Quality of Care Commission.

 “Discussions about guardianship, healthcare, and end-of-life issues regarding loved ones who have developmental disabilities are complicated, but advance planning is the best way a family may make these decisions objectively.  It is important that families seek guidance from qualified professionals while going through this process,” said Carl Koenig, interim director of the Kennedy¨Willis Center on Down Syndrome.

“The establishment of these plans takes time,” continued Mr. Koenig.  “Once guardianship and a life plan are established it is important that these instructions be kept up-to-date to reflect the current status of the individual and his family.”

The Kennedy-Willis Center on Down Syndrome opened in 1996, and provides counseling and training for direct care staff, medical professionals, and families who care for loved ones who have Down syndrome and other disabilities.  The Center has sponsored over 30 conferences on a variety of topics pertaining to Down syndrome, including behavioral patterns, sexuality, life planning, aging, and inherent medical conditions. 

Founded in 1980, Pathfinder Village is a remarkable residential community for children and adults who have Down syndrome and other developmental disabilities.  Additionally, it offers a day school program for students living in the area's school districts.  Pathfinder Village is licensed by the State of New York and its programs are regulated by the State Department of Education, Department of Health, and OMRDD. It is located on State Route 80, two miles east of Edmeston and 15 miles west of Cooperstown.  More information is available at its website, www.pathfindervillage.org, and Pathfinder Village now has a fan page on the popular social network site, Facebook.

Spring Break at Pathfinder Village

Sun-drenched southern beaches are a long way from Pathfinder Village, an extraordinary residential community specializing in Down syndrome and intellectual disabilities. But for Colgate University freshman Griffen O’Shea, and Jennifer Viera, Spring Break at Pathfinder Village has been a life-changing experience.

Colgate University, Hamilton, offers its students opportunities for community service during its Alternative Spring Break program, as a meaningful option to student parties in Ft. Lauderdale, Daytona and Virginia Beach. Pathfinder Village, a recent participant in the University’s program, offers flexible internship experiences for undergraduates and graduate level students who may be considering careers in human services, or who wish to learn more about working with people who have developmental disabilities.

The Alternative Spring Breaks are organized through Colgate’s Center for Outreach, Volunteerism, and Education (COVE) and the Office of the Chaplains. Other student teams went to programs at the Oglala Lakota Nation in South Dakota, the Dominican Republic, and New Bern, North Dakota.

"These trips open students' eyes so that whatever job they end up in, they have an awareness about the world," said Ingrid Hale, COVE director. "We want the participants to become engaged citizens."

“I had applied to attend some of the other programs that were offered, but had been turned down because upper-classmen get first-choice,” said O’Shea, 18, a native of Babylon, NY. “But then the opportunity for Pathfinder came up, and after watching the DVD and looking at the materials, this looked like a lot of fun. Plus, it’s close to Hamilton so I can come back and visit my new friends.”

“This is a great way for us to give back to the community and form new relationships,” added Ms. Viera, 19, Pelham, who is considering a major in education, history, or computer sciences. “I’ve known some people who have had Down syndrome before, but not well. This is a great way to get to know kids in their home environment. They seem so free-spirited and it has taught me the lesson that we should always try to enjoy life.”

O’Shea and Viera have spent their week at Pathfinder working with residential and day students at the Village’s school, which serves 26 children, ages 11 through 21, who have Down syndrome or other learning disabilities. They’ve also moved the school’s library from a small office to a larger area at the Village. In addition, they’ve assisted students in their daily lessons, and helped prepare for the annual St. Patrick’s Day party at the Village.

Their evenings have been spent dining in the Village’s residential homes, and participating in the regular recreation and enrichment programs that are offered to all of the Village’s 80 residents, who range in age from 14 to 58. The interns will share their college with some of the residents during a visit to the Colgate campus Visual Lab/Planetarium to cap-off their exchange program.

“We’re actually happy we got shut-out from the other programs,” Griffen and Viera agreed. “We hope they offer the program at Pathfinder again next year.”

Paul Landers, the Village's chief executive officer, was appreciative of the college interns’ work. “Griffen and Jennifer have gotten to know our residents for the past week, and they learned that working with people who have Down syndrome can be a tremendously rewarding experience. These young people are demonstrating initiative and concern, and will be fantastic leaders in whatever careers they choose. They will be great advocates for people who have disabilities.”

Photos: 

Top:  Griffen O'Shea and Chris Sullivan blow up balloons using a compressor to decorate for Pathfinder Village's annual St. Patrick's Day Party.

Below: Frank Stohlman and Jennifer Viera work to reshelve children's books at the library.