The Agony & Angst of Advocacy For Special Needs Children

the-agony-and-angst-od-advocacy-for-special-needs

by Rabbi Richard Address~ A group of colleagues recently attended a presentation by representatives of the local Southern New Jersey Jewish Federation that reported on a recently completed population study of the Jewish community.

There were few surprises. Anyone familiar with the community, or with national trends, could have predicted that we are older and less religious and have changing patterns of affiliation. One trend did jump out at all of us because it was geared to the local community. That was the trend that saw a major rise in the number of special needs young people. Thus the agony and angst of advocacy exists for these special needs children.

Many of us have worked with parents who care for, nurture and advocate for their children with special needs. In many ways, these are modern, unsung heroes. Many years ago, I had the honor to officiate at my first Bar Mitzvah that involved a young man with special needs. He had lived his life with cerebral palsy. His speech was compromised and he used a wheelchair.

I met with his family a year before the date for the service. We went through what was going to be possible and gave the family the assignment. For months on end, this young man’s mom worked and worked with him. We met regularly, as with any other child. On a beautiful May morning this young man was “called” to the Torah for his Bar Mitzvah. He had learned the blessings for the Torah, which he pronounced to a hushed and filled sanctuary. He carried the scroll with him as his mom escorted him in his wheelchair for the procession. When it came time to pronounce the traditional blessing, I looked into his eyes and he looked back and I knew that he knew that he was bursting with pride. As our tradition teaches: “each in their own way”.

I relate this story because of the profound dedication that this mom had to make sure that her son was able to participate, to the best of his ability, in this tradition. Throughout my career I have witnessed similar parent-child partnerships. I have been honored to have been part of a team that created the program on Disabilities Awareness for the Union for Reform Judaism.

This past fall, I was privileged to teach, for the first time at our seminary, a new course on Diverse Learners, which focused on the issue of welcoming young people with disabilities into the community. Throughout all of these discussion was the fact that a reality of our world is that parents need to be advocates for their children, especially within the educational system. Increasingly, synagogues are focusing on this population. My own congregation is blessed to have a woman who works only with the close to 100 young people in our school who have some sort of special need issue.

That demographic study I referred to is typical of what we are seeing around the country. It is a trend that transcends our community. The growing awareness of special needs issues is a continuing trend. The parents of these young people are, as I mentioned, heroes; for they often sacrifice much of their own time and dreams to make sure that their child has a chance to attain their potential. The costs in time, as well as money, can be overwhelming and stressful. The advocacy wave has made it possible for more and more attention to be paid to this growing constituency. From physical and cognitive issues and challenges, behind much of this wave are parents who refuse to take “no” for an answer. We all know these people.

Yet, as society changes, there is one issue that is emerging, ever so slowly, that society has yet, I feel, begun to examine. I first ran across this challenge as we created the Disabilities project and our project on Sacred Aging. This issue is the concern on the part of many Baby Boomers who are caring for their adult children with special needs. Their question is simple, yet so complex: who will care for my child after I am gone?

After all, these young people with special needs will grow up. Is society able to care for them? Are there enough programs for adults with special needs? Who will pay for these programs? Who will care for these adults when their own parents cannot? This is not a reality that is far away. In fact, it is here, but rarely discussed. As Boomers age and the demands on the safety net programs surge, who will make the choices on allocating resources so that all in our society will have a fair chance at a life of dignity? Who will advocate for these adults after their primary advocates are no longer here? This is a challenge that awaits us.

 

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About Richard Address

Rabbi Richard F. Address, D.Min is the founder and editor of www.jewishsacredaging.com. He is the author of “Seekers of Meaning: Baby Boomers, Judaism and the Pursuit of Healthy Aging”. Rabbi Address developed the programs in family issues for the North American Reform Jewish movement and currently serves as a rabbi of Congregation M’kor Shalom in Cherry Hill, N.J. He hosts the weekly “Boomer Generation Radio” in Philadelphia

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