The ADVANCE Conference - The Ruderman Jewish Special Needs Funding Conference

On December 6th I had the opportunity to once again participate in the conference, designed to help Jewish philanthropy increase its attention and commitment to programs for people with disabilities.  Jay Ruderman, the President of the Ruderman Family Foundation kicked off the conference by announcing the first ever prize for inclusive Jewish programs.  See http://www.rudermanfoundation.org/news_and_events/RudermanDisabilityPrize.pdf
The Ruderman Disability Prize is intended to encourage innovating and inclusive programs for people with disabilities in the Jewish Community.  I am helping review the applications and am hoping to read about some wonderful programs.

There were many terrific speakers.  Marlee Matlin the Academy Award winning actress spoke of growing up deaf and Jewish in Chicago, and how her career and her advocacy for people who are deaf coincided.  A great quote from her presentation, when speaking of her parents' desires for her to explore, on her own, her physical community... "If I could not explore the neighborhood, how could I be expected to explore the world?"  Needless to say, she was fantastic.

Tim Shriver also did his usual job of motivating and inspiring people  He showed a short video that is worth watching: http://www.youtube.com/watch?v=1iSlok6muY0  It was produced by a 16 year old girl who has a younger brother with Down Syndrome.  Such talent at an early age.

There were many interesting breakout sessions.  I got to do one with Arlene Kanter, the Director of the Disability Law and Policy Program at  Syracuse University School of Law.  Though I have read her stuff for years I had never actually met her.  I was surprised at some of the strong negative reactions I got to issues related to Article XIX, especially people choosing where they live, as compared with their parents choosing for them.  Lots of work remaining.

Isaac Herzog, a Member of the Knesset (Israeli Parliament) and son of the former President talked about fairness and justice in Israel.  Barry Shrage of Combined Jewish Philanthropies in Boston gave an affirmative presentation on the role and responsibility of Jewish Federations in causing change for people with disabilities and other marginalized populations.

The final speaker was journalist and author Tom Fields-Meter, the author of Following Ezra, a book about raising his son Ezra who is autistic.  He is a great storyteller.  One segment in participial-when a therapist said they should go home and mourn for the child they did not have-a "normal" child.  He said they decided to celebrate the child they did have, and went on to tell some stories about what Ezra could do, what he was learning and how he was growing.  I am going to buy the book.

Jay Ruderman ended, briefly and succinctly, saying that including people with disabilities is about justice.

Until next time......

A New Tool

The Community for All Checklist, and accompanying guide has been published by the Open Society Mental Health Initiative (that includes people with intellectual disability) and the Law and Health Initiative of the Open Society Public Health Program.  Authored by our friend with the famous name - Camilla Parker - a human rights attorney in the UK.  These tools should be helpful to policymakers, advocates and anyone interesting in seeing Article XIX fulfill its potential in their country.  The link to these free publications can be found at http://www.soros.org/initiatives/health/focus/mhi/articles_publications/publications/community-for-all-20111202   or http://tinyurl.com/7fy64gv

Day Two, Part Two, Regional Forum in Kathmandu

The afternoon of day 2 was focused on Inclusive Education.  Diane Richler did her usually brilliant job of explaining why inclusive education, especially in the developing world, was not only a good strategy for students with disabilities, but how it makes sense from a resource perspective.  In places where not all children are yet in school, developing a separate special education system is both unrealistic and not a good use of resources.  Human Rights Watch staffer MukundaHariDahal, from Nepal, presented on how the system in evolving.  But such a long way to go.  95% of children with disabilities in Nepal do not complete primary education.  And those with intellectual disabilities have little offered to them.  Ines Escallon presented on what the CRPD has to say about inclusive education-a lot- and how having just the laws is not enough to assure that children with disabilities get the education promised by the CRPD.

The closing panel included discussions by Nagase Osamu from Japan. He is a great speaker, and spoke about how we can learn from good practices, even when we start small.  Ralph Jones the General Secretary of Inclusion International gave a spot-on talk about why Inclusion International, and the movement of parents and self advocates is so important, not just for people with disabilities but for countries and their advancement.   Ciara Evans, a self-advocate from the UK listed three things for people to consider:  1) Parents need to listen to the voices of self-advocates who speak and understand the feelings of those who do not speak; 2) Ways parents can help the dreams and aspirations of people with disabilities and 3) Why it is important to know the dreams and aspirations of people with disabilities.

The take away saying from the day: Family organizations need to be good roles models!  I remember working at The Arc and having some say that families and people with disabilities did not need to be a strong presence on chapter boards.  Seems that people at this conference disagree-they want, perhaps demand, a strong presence.

Day two of Regional Forum - Kathmandu

In what might be the most beautiful conference setting, with perfect weather and incredibly uncomfortable chairs, we began the second day with a presentation by Monsur Ahmed Chowdhury from Bangladesh.  Mr. Chowdhury, who is blind, is a member of the UN Committee on the Rights of Persons with Disabilities.

I did a presentation on the implications of Article XIX for families and providers of services.  I am concerned that so many are concentrating ont he rights aspects of the CRPD, absent an understanding that the rights translate into laws, policies, regulations and services which may be very different than current practice in many countries, especially in the less developed countries in this region of the world.

There were four presentation groups on the panel after my presentation, from Japan, India, Vietnam and Myanmar.  All had good things to say but perhaps the highlight of this trip for me was the presentation by Pramila Baladundaram from India.  She has develop a grass roots empowerment strategy for very poor families who have children with disabilities.  Working with families and neighbors, she combines micro-enterprise development with support for families.  It is a strength based approach, and this quiet dignified woman laid out an approach that has, I think, great potential in the developing world.  I encouraged her to write it up and Inclusion International could disseminate it.  We then broke into groups and discussed the panel, looking at challenges, solutions and ideas to explore. 

Here are some of the ideas, raw transcript, of what the groups came up with during that session:

What does community mean to you?

1)      How do you define community?

a.       Included

b.      Families supported by the community

c.       Living within families

2)      Access to facilities

3)      Acceptance and learning from community: Works both ways-people learn from the community and the community learns from pwd

4)      Teaching and creating awareness

5)      Being part of the community in every possible way – activities, roles, responsibilities

6)      Living with the family until marriage is tradition (Nepal) – so families supporting people with disabilities miss out on a lot of social activities

7)      Communities are constant and regular: e.g. Neighbors provide support

8)      Community is the future-what will be there after the parents

a.       State support needed

9)      Problems: Keeping the children entertained and their safety and protection

a.       Suggestion of peer to peer networks in schools

b.      Provide teachers with training and support-to recognize and intervene in problem areas

c.       Understand abuse in the family: Parent counseling and training

10)   Be aware of both risks and opportunities out in community and in the family

11)   There are multiple ways of interpretation for the term community inclusion

GAPS

12)   How do you prevent violence and abuse – is there a local solution

13)   Need to improve the environment for people with disabilities in communities.

14)   Communities need to realize they also have a responsibility to their fellow citizens with disabilities

15)   Reach out to “All” segments of the community e.g. develop self help groups for sharing support and innovative answers by experienced parents

16)   Helping parents to value their children-focus on strengths as well as needs – focus on ability not disability

17)   Cultures can change-need strategies

18)   Medical personnel not trained in disability issues

19)   Support needed for people with disabilities in dangerous/risky situations

20)   Negative parental views

21)   Government support needs to be increased

22)   No access to sports and recreation

23)   Provide information on risks and potentially dangerous situations for families and professionals.

24)   How do you get rid of barriers in resource poor communities –need replicable strategies

25)   State an “initiative” to involve the entire community

a.       Start small and with concrete actions

26)   How to get government to take action-to cut through delays?

Rolling Blackouts, Unpaved Roads and the Doha Airport

Due to no internet access for a few days I have not posted anything for a few days.  Sitting in Doha airport and hope to stay awake to summarize the last two days of work in Kathmandu.  Some really good stuff, and some huge challenges.  And then there waws the flight to Mt. Everest. Small plane, breathtaking views, chance to get up close and personal with the pilot and co-pilot and, hopefully, some good photos.  Back to you in a day or so.