If you read the paper, listen to the news or look online, you are constantly bombarded with stories about cuts to funding of programs, especially programs for individuals with special needs. My 30-year-old daughter, Jessica, has severe disabilities and is a recipient of many of the initiatives that are at risk of elimination. This is not a story about what we are losing; rather this is a story about using the resources that are in our community.
Last month, I celebrated Passover with more than 50 people. This was a week before the actual holiday of Passover was set to begin. We all gathered at Temple Beth Tzedek to celebrate. The temple has an enrichment program, called Outstretched Arm, for Jews with special needs. Its philosophy is: Let us celebrate the holidays together and stay in touch in meaningful ways.
There were young, old and middle-aged people like me. There were clergy, families, teachers, students and, most of all, volunteers. And there were individuals with special needs from all over our community, my daughter and her housemates included. Some folks drove more than 90 minutes to get to this service.
We sang songs, participated in the ceremony and we ate – a lot. All throughout the service, volunteers from the temple were offering us more food, more juice, more dessert and more conversation. They couldn’t do enough to make this a fabulous experience for all.
So how much did this cost the state? Nothing! This is called natural support, a support that is provided by the community at no cost to the recipient. It is the community providing a mitzvah – a Hebrew word that is pronounced mits-vah – meaning a good deed.
What was the return on their investment? Priceless! Volunteers were beaming with pride about the community event their temple was able to provide. The families were thrilled to be part of an inclusive ceremony. The students were learning that we are all different, but can come together to enjoy and appreciate each other’s company. Jessica smiled and beamed the entire morning, which, of course, warms our heart and soul.
Jessica needs all of the programs she currently has. She needs support in activities of daily living, learning and social interactions. It will cost New York State more tax dollars, down the road, if programs are eliminated and threaten her quality of life. The long-term potential repercussions are decreased safety, health and well-being.
As parents, we provide a lot of support for Jessica, but no initiative can rely on one person; there needs to be a strong foundation of support. Parents’ age and life situations change. A structure needs to be in place so that individuals who are vulnerable are not relying on the resources of one, but rather the capital of our community.
Our region has so much to offer and share – we are a community of volunteers. Individuals like Jessica need resources from the state to ensure there is a consistent high quality of life, and initiatives from the community to supplement the well-being of all individuals.
Jessica and our family thank the volunteers from Temple Beth Tzedek who made Passover and all of the Jewish holidays a wonderful experience.