By Amy LaGrange

 

ALBANY, NY MAY 2, 2007 Opportunities for individuals living with Down syndrome in the Capital Region and beyond are about to get even better.

            On Wednesday, April 25^th, the board of directors of Down Syndrome Aim High, a local organization serving individuals with Down syndrome, met to vote on several motions. These included dissolving Aim High, transferring their resources to the Down Syndrome Resource Center and a new name for the combined organization.

            The Down Syndrome Resource Center, another local facility, has begun processes of merging with Aim High, both organizations inform and promote the acceptance of people with Down syndrome. Each organization brings a huge contribution to the population of people with Down syndrome living in the Capital Region, and beyond. The new organization is named Down Syndrome Aim High Resource Center, Inc.

            Located on Marcus Boulevard, the center alone serves people with Down syndrome by providing information to expectant and current parents of children with Down syndrome, a library for professionals and parents, seminars and informative meetings, and events to bring together people with Down syndrome from all over the state and nation.

            Down Syndrome Aim High, the other facility involved was founded 25 years ago and has always consisted of an all volunteer board of directors. Harm Velvis, president of Aim High from 1999-2002 and current Executive Director of the resource center, found that there were too many questions, of such high complexity for the volunteers to handle.

            Five years ago, Velvis, also a local physician began looking into opening a medical clinic for people with Down syndrome in Albany to fulfill the needs of local people with Down syndrome, which Aim High could not. Velvis found that a paid coordinator, who could coordinate care with all local physicians, would be the best option. Aim High, however, being a volunteer organization could not pay any employees to do this. Therefore the resource center was created, with three paid employees.

            After five years of working concurrently, the Resource center and Aim High have decided it is time to merge.

            “In five years, it became obvious they were doing things overlapping each other, it makes more sense to have one organization” said Velvis.         

            Down Syndrome Aim High Resource Center, Inc. will be funded through fundraisers, including a golf tournament, donations and a small grant from OMRDD. The new organization will be run by the current staff of the resource center as well as the volunteers from Aim High. “You can just call the office and get answers, you don’t have to leave a message,” says Velvis.

            Separately, these organizations each have a lot to offer, combined, the effect will be intensified.

            Each organization reaches beyond the Capital Region, beyond New York and even beyond the United States. Last year, 95% of the people that the center served were located in 29 counties here in New York, 4% of the people served were from other states and even 1% were from countries other than the United States. The center and Aim High are able to extend its borders out of its office in Albany through their website.

             

The combined website provides information on what Down syndrome is, by a “fact-sheet” from the National Down Syndrome Congress as well as information on reasons as to why a person would be born with Down syndrome. Articles on subjects ranging from how to announce the birth of a child born with Down syndrome to the typical head circumference for 0-3 month olds can be accessed through the website. 

According to Velvis, over 500 people and families subscribe to the Aim High newsletter, which is nationally accredited.

Together, Aim High and the Down Syndrome Resource center present a remarkable calendar of events. This calendar of events is jam-packed; giving people with Down syndrome, professionals and parents many opportunities to socialize, learn, and grow.

Every Wednesday, a support group meets from 2:30 to 4:00. This group, according to the website, “deals with the problems of stress, anxiety, and sadness that can sometimes feel overwhelming.”

Furthermore, benefits are held to raise money for the library and other events. Participants enjoy trips to see the Albany River Rats, mother-daughter movie nights and seminars about many different subjects all of which are scheduled to happen in the coming weeks.

All events are open to absolutely anyone, some at a small cost. People with Down syndrome, families, friends, extended families, teachers, doctors, nurses, therapists, students and anyone interested are invited to join.

Local parent of two children with Down syndrome, Brenda Vanderbilt has experienced first hand what these two places have to offer. The resource center has helped her construct her son’s Individualized Educational Program (IEP), as well as other educational issues, which many parents must deal with on a daily basis.

According to Programs Coordinator, Marietta Shork-Velvis, volunteers are always needed, especially for one very large up-coming event. From July 9-13 and July 16-20, the center will host their second annual “I Can Ride” Bike Camp. This camp is held at both the Hudson Valley Community College Campus and Union College Campus. For this event the center teams up with STRIDE and the Albany Chapter of the Autism Society of America to help individuals with, not only Down syndrome, but any impairment, which limits ones ability to ride a two-wheeler. During the 2006 Bike Camp, 67% of participants successfully learned how to ride a two-wheeler bike in just five-75 minute sessions.

Vanderbilt’s son successfully learned how to ride a bike at this bike camp.

Diane E. Lang, executive director of the center, also manages the centers’ library. This library is open to anyone needing information on Down syndrome. The collection of books at the resource center can be utilized by anybody in need, including college students doing research and local teachers.

“The extensive library is always open for people to read,” says Velvis.

Because of having a professional staff including Shork-Velvis and Lang, both of whom are parents of teenagers with Down syndrome, the programs offered are more intense, dealing with many issues. Professionals and local students may be interested in a workshop which offers help writing IEP’s. There is also a girls club, open to teen girls and deals specifically with issues that teens face, according to Velvis.

“I like teen dances, dinner dance, Bike Camp, conference, borreltje, Red Cross Babysitter's Training, Financial Awareness Seminar, and Girl's Club” said Jennifer Lang, a local young woman living with Down syndrome, also the executive directors daughter.

Velvis would like to see more individuals, families and professionals become involved in the combined organization in the future.

Down Syndrome Aim High Resource Center, Inc. will have a 13 member volunteer board. 11 board members are parents of children with Down syndrome, one member has no family ties to Down syndrome, and one member is an individual with Down syndrome, who is also a self advocate.

According to Velvis the new organization will be dominated by family members. In fact, the by-laws will say that the majority of the board will be either people with Down syndrome or family members so that the organization can be, “for and by people with Down syndrome and families.”

“It is extremely exciting to have a new organization with professional staff and volunteers, the more people involved, the bigger the ripple effect is” said Velvis.

“I think they should be together. It’s a wonderful addition to the community,” said Vanderbilt.