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3rd National Self-Advocates Conference in Jerusalem

February 2015

IE Self-Advocates convene from across the  State of Israel 

On December 25, the National Self-Advocates Conference was held in Jerusalem for the third year in a row.  Over 120 self-advocates, facilitators and professionals attended, all of whom are active in 11 self-advocate groups throughout Israel.

In preparing for the Conference, group members were asked what subjects they would like to see addressed.  The most popular ones were guardianship and preparing for retirement.  Self-advocate Sivan explained, “On the subject of guardianship, we were all asked if we need guardians, or if we can manage alone or need some help. Regarding retirement, we spoke about ageing parents and the question of whether they would continue being our guardians…”

Group members thought this subject needed further discussion due to its importance and in view of the proposed law regarding the right of an individual to choose his or her guardian and which issues do or do not require a guardian.  “Some parents may oppose the law, saying that their child absolutely must have a guardian,” Sivan pointed out, “which is why it needs to be raised at the Conference.”

She continued, “This is an important discussion.  I believe a guardian is needed for monetary matters and medical treatment, because the guardian needs to know how to proceed and hear (professional) opinions.  I don’t know if people with intellectual disabilities can manage alone.  If someone wants to buy CDs or expensive items, a guardian’s approval is required, and that’s good, because these are expensive articles and money shouldn’t be wasted.”

During the Conference, the air buzzed with anticipation as participants broke up into discussion groups to expand on each of the chosen subjects.  Netali says, “I was very excited during part of the group discussion, but Yechiel and Abed helped me and the discussion about guardianship was important.  We spoke about supported decision-making.  I felt that my ability to say things in the group was brave – things I’ve been keeping to myself but were important to get out into the open.  I learned that if I need something, I must persist, just as I did when I wanted to live in the community.”

Simona related that she has “good relations with my father, who is my guardian, and it was important for me to say that.”

Sivan said the discussions were not easy.  “Participants didn’t understand the subject that well and weren’t sure what to say, where they do want a guardian and where not.  Some said they do, others don’t.  After the discussion, representatives from both groups reported back to the full audience.”

In talking about his difficulties in the group discussion, Yechiel said, “It was great and exciting because I enjoyed the guardianship discussion with Netali despite it being somewhat hard.”

Other subjects relating to guardianship also were raised, such as marriage.  Sivan explained, “Here, too, parents should decide whether or not their children should marry, but I don’t know if it’s logical that children first decide and the parents then veto it if they don’t like the other family.  First the couple should decide.”

Conference attendees spoke about the significance of their participation and what they had learned.  “They learned more about people with disabilities, to prepare them for life,” noted Sivan.  Netali was “very excited that I had the courage to call people up to the open mic session together with Dudu.”

Simona summed up, “I enjoyed the food, the disco and seeing lots of friends and am already looking forward to next year.”  Netali also enjoyed the disco, adding, “It was great seeing people like me and I was excited to learn.”  Sivan concluded, “Guardianship relates to our lives, the future and independence. I hope it will lead to lessons being learned.  In other words, guardians are responsible for protecting their children, and people with disabilities will try to manage alone and consult with their guardian only when needing help, such as with money.”

The Self-Advocacy project is made possible in partnership with the Ruderman Family Foundation and the Jewish Federation of Greater Los Angeles.

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