With a goal of promoting community-wide acceptance of those born with Down syndrome, the Down Syndrome Parents Group of Western New York (DSPGWNY) is gearing up for their 7th annual Step Up for Down Syndrome Walk on Saturday, September 27th from 11am-2pm.. According to DSPG Spokesperson, Gretchen White, special participants will lead this year’s walk.
“Members of The Seven Men Project will carry the DSPGWNY banner and lead our walk this year,” White said. “These are men, ages 24 to 29, who were all born with Down syndrome and grew up together participating in activities such as Special Olympics and the Skating Athletes Bold at Heart (SABAH). They also attended schools and were involved in community activities where they were fully integrated with the rest of the WNY Community. Today they live in a home in a neighborhood, just like any young men their ages. They maintain the home and the property, they plan, shop for and prepare their meals, they go out the door regularly to work, volunteer and learn. They are part of neighborhood events and activities. And while they do have staff supporting their life choices and providing a safe and secure home environment, each one of the seven men is a capable, functioning adult enjoying an independent lifestyle. Our organization is dedicated to proving kids and adults with Down syndrome are the same as anyone in our WNY community and The Seven Men Project provides clear proof of that.”
The Seven Men Project evolved due to the intense need for adult independent living facilities. Currently there are more than 12,000 people on the NYS-Cares adult housing wait-list. In WNY there are more than 1,000 waiting for the opportunity to live independently in a supervised setting. Those long wait-lists encouraged the parents of the seven men to band together and establish an independent home for their adult children. Orchard Park resident and mother of one of the seven, Mary Clare Smith, detailed the process.
“We definitely had to “think outside the box” for a housing solution but, most importantly, we worked hard to balance what was important to our sons as well as what was important for them,” Smith said. “To begin, we, as parents, agreed that the men were mature enough to make the transition from home to living independently in the community. Then we partnered with the Aspire of WNY Agency to find a suitable home— one with seven bedrooms. Finally, after four years of meetings and detailed paperwork, all seven men moved into the house in June of 2013. I have to say they settled in perfectly, not only among themselves, but within their Amherst neighborhood as well. And while all of them still enjoy being with their families, their overall preference has become life in their new home.”
The seven man home is “person-centered” and staff is encouraged to let the men make their own decisions, which empowers each one to define the direction of their own lives. The men come from across WNY having grown up in Buffalo, Hamburg, Orchard Park, West Seneca Lancaster and Tonawanda. As an interesting side story many of the staff are related to a disabled individual, which has led them to this type of work.
The Step Up for Down Syndrome Walk is an awareness-raising event first organized by DSPGWNY in 2008. This year’s one-mile walk will take place Saturday, September 27th from 11am-2pm. beginning at Coca-Cola field to the Buffalo Naval Park and back. Entertainment, games and activities for children will be provided throughout the day. Full details are available at the DSPGWNY website, http://www.dspgwny.org/.
ABOUT THE DOWN SYNDROME PARENTS GROUP OF WNY: The Down Syndrome Parents Group of WNY was founded with the mission of informing, educating, and creating awareness of Down syndrome throughout WNY, while improving the lives and supporting the families of those with Down syndrome. Organization objectives include: providing support to persons with Down syndrome and their families, making current information on Down syndrome readily available, providing information on pertinent educational programs and community services for those with Down syndrome as well as for those impacted and their families, working with other support groups and organizations to improve the quality of life for those with Down syndrome. DSPGWNY website. DSPGWNY Facebook. Step Up for Down Syndrome Walk 2014 Facebook. DSPGWNY Twitter.