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.

Why it helps to turn on the electic kettle if you really want tea

Got up just before 4 AM and put water in the kettle for tea, as the coffee is not good at the hotel.  Plugged in the kettle, put the tea bag in the cup and started to check e mail.  When there was no hot water 15 minutes later realized you actually have to turn on the kettle after plugging it in  Am now drinking tea.

Monday was spent in a series of presentations, with people from fifteen countries in the Asia Pacific region of Inclusion International both as presenters and as audience members.  The audience was about 1/3 self advocates, some professionals and the balance being parents and representatives of parent groups.

Klaus Lachwirz the President of Inclusion International gave a good overview of Inclusion International, and the hope of the CRPD.  He explained that when they asked families what they wanted, it boiled down to understanding the implications of the convention, building capacity of countries to support people, networking with other families, raising awareness of the needs and contributions of people with intellectual disabilities and their families and strategies to increase pressure on governments to implement the CRPD.  The quote I took away was "the process of inclusion should be inclusive."  Great phrase.



Nagase Osame, a Council Member, regional representative from the Asia Pacific Region of Inclusion is from Japan and he presented and MC'd  the morning.  He talked briefly about forced sterilization, a practice still prevalent in the region.  He talked about how living in the community is a human right, a sentiment echoed by the self-advocacy panel that followed.  They were members of Inclusion International's Self-Advocacy task force and included David Corner from New Zealand, Mia Farah from Lebanon, Haydee Beckles form Panama, Ciara Evans from the UK and Quincy Mwya from Zambia.  They each gave their thoughts on how to support people being more independent and full participants in society.  Ciara in particular could be hired out to give political stump speeches.  A great speaker.

Connie Lauren-Bowie, Inclusion International's executive director presented the organizations strategy and priority setting process, an open, democratic and inclusive effort.  Well done.  She presented on three articles of the CRPD, Article XII on Legal Capacity, Article XIX on Living and Being Included in the Community and Article XXIV on Inclusive Education.  All three of these will be the subject of Tuesday's meetings.

Mia's mother then spoke about some parents, from four countries, who overcame seemingly impossible odds to better the lives of people with intellectual disability in their countries.  Great stories.

The diversity of how people with disabilities are supported, or not supported, is a wide range in the region from New Zealand, an institution free zone, to speakers from countries where no one had anything positive to say about being the parent of people with disabilities.  That was depressing.

Tim Gadd, the volunteer Inclusion International Treasurer from the UK did a great job of moderating the remainder of the sessions.  He is a born showman.  Some of the presentations were nothing short of outstanding.  United Voice, the self-advocacy group in Malaysia stunned the crowd with its presentation, and the accomplishments they have made.  They were started in the mid 1990's under the wing of the parents association.  They have long since become their own entity with 20 self advocacy groups in Malaysia and 175 active members.  They run a jobs program, and have a grant from the government to explain the self advocacy movement to NGO service providers doing community based rehabilitation!
heard from Chosen Power, the self-advocacy group in Hong Kong.  Another outstanding effort.  Their motto: Advocacy, Liberty, Diversity.  They focus on choice and respect and have many NGOs and companies, if I understand it correctly as partners.  They use performance art-drama, to get across their issues to the public at large, and have performed widely including once in Brazil.  It was great to see, with both Hong Kong and Malaysia, the strength of advisors-helping but not controlling.

VALID, the self-advocacy group from Australia also made a compelling case.  Their motto - Stand Behind, Stand Beside, Stand Before was explained and the support staff with them was our first leadership institute participant from Australia.  It was also nice to see the pairing of a person with intellectual disability and a person with autism who together presented a compelling case for VALID's efforts.

Finally, PARIVARR, the parents association in India presented on a project they are doing on supported decision making.  An important issue in the US and in most of the world as I have seen during my travels.

The evening was a reception and I got to speak with people from a half dozen countries, some I had met before and others who were new to me.  Always interesting.

A good start and a lifetime's worth of work to do here, as everywhere.

Until Tomorrow.

First (Half) Day in Nepal

Greetings from 4,000 feet or so above sea level.  Got to the airport at 1 PM or so-time difference is interesting, hours and minutes different.  First you get off the plane.  Then you wait for a bus as the first buses were filled. Then you go to immigration with all of the forms and they say you must have a photograph to get a visa.  Then you get out of line and go to the photo booth.  They take your picture but will take neither Euros or $.  Then you go to the currency converted and, 18% later, get currency.  Then back to immigration and three different people, sitting next to each other inspect, initial and finally paste a visa into your passport.  Then off to the luggage and a fifteen minute wait.  Then find the hotel driver-easy-but he couldn't find the van.  The ride to the hotel was harrowing.  Traffic laws are, apparently, a suggestion and the crowds are amazing, mostly people on motorcycles and scooters.  Finally arrive at hotel, check in, unpack and prepare for a nap.  The phone rings and we are off to do some tourism and, for the five others I was with, power shopping!  See some photos.


This is my first real experience with developing world poverty and contrasts.  Significant differences, but signs of a middle class.  Incredible small entrepreneurship.  Stores, shops, stalls and sidewalk vendors everywhere.

A long dinner with discussions about the Inclusion International events of the next three days and the day was over.  I met a few self-advocates from New Zealand, Lebanon and Australia.  The guy from Australia was accompanied by a graduate of a NLCDD Leadership Institute (see www.nlcdd.org)  and we plan to get together to chat after the day's events on Monday.

The photos of the Temple that are posted do not begin to show its size and dominance of a market area.  as do street vendors selling everything from food for people to food to feed the pigeons.

Shops of every description circle the Temple, Saw a lot of Monks and made a donation to have them pray for my friends Jim, David and Mary Lou.

Until Monday.

En Route to Regional Forum in Katmandu

Thanksgiving with extended family was quite wonderful.  The day after Thanksgiving my son David drove me to Dulles so I could travel to Katmandu. Anticipating heavy traffic we left very early for a 10 PM flight.  As a result I spend a lovely seven hours at Dulles-and there was essentially no traffic.  I was at least rewarded with an exit row seat.

I am writing this from the Doha airport, where I have a 9 hour layover.  I sprung for a service that included an escort through security and the evening in a very nice lounge.  Several cups of coffee, some lunch (dinner) and a shower later, working on a report and waiting to be tossed out at midnight when I will only have a 4 hour wait for my flight.  Interesting mix of people here.  Men in flowing robes with various types of head covernings, women similarly attired and lots of westerners from various places.  I think I have heard a half-dozen languages in the past two hours.

Until tomorow.

The Alliance for Full Participation Second Conference

In 2005 most of the major disability organizations came together to create the Alliance for Full Participation.  In September of that year nearly 2,000 people gathered in Washington to commit to community inclusion and participation for people with disabilities.  The second gathering was held this past week, and the focus was on employment with a goal of doubling the number of people with intellectual and developmental disabilities who have real jobs by 2015.  It was good, as always to see friends and colleagues, though I was most encouraged when I realized that most of the people there were new to me.  The stories of people who escaped from sheltered workshops were heartening.  Perhaps the most disturbing thing happened during a session masterfully moderated by Frank Sesno, a former CNN correspondent who has a sister with Down syndrome.  Her also moderated the Town Hall in 2005.

One panel was a group of major employers...Bank of America, Lowes and Walgreen's.  They all said the same thing-they hire talent and want to work with the disability community to find that talent.  The audience questions were all social services questions!  Silly questions out of some vocational rehabilitation manual that totally missed the point.  I had hopped for better.

The effort to help people secure meaningful employment need support for the long term.  Hopefully, the Department of Labor will wake up from its decades long stupor and finally help.  We can hope.

Off to Katmandu after thanksgiving for Inclusion International's Regional meeting.  We will continue the focus on Article XIX and see if a country in that region is interested in our efforts.

Travel to Vienna and a small bit of tourism

Got up very early, showered packed and checked out of the hotel.  Walked to the tram stop, adjacent to the hotel and boarded a tram as it arrived.  Quite the feat with a big suitcase, briefcase and a small satchel!

True to form, it was 10 minutes on the tram to the train and I walked to the station, about five minutes from the tram stop.  Not seeing my train posted I found a policeman who spoke English.  Turns out I was at the wrong train station!   He he gave me directions to the main train station, ten minutes away.  Amazing to find so many people on the street before 6 AM.  True to form, the train arrived on time, and I found my car and assigned seat.  The 6:39 to Vienna departed at 6:39.  A long but beautiful ride through the countryside and now no more border checks.  A 20 minute taxi from the train station to the hotel.  Rachel arrived a few hours before I did coming directly from the US, and we had a long relaxed lunch, a two hour stroll and procurement mission for concert tickets, toured the St. Stephens Cathedral and headed back to the hotel.  It is cold here and windy but tomorrow promises to be warmer.  Until later.

Prague, Day Two

Well, the cocktail party turned out to be “heavy appetizers “ and went on, I am told, until after 10:00 PM.  Had an interesting discussion with an Assemblies of God minister, father of six, none of whom have a disability, about inclusion and the role of the church.  We talked about our kids, of course.  His eldest is studying in the US now and working for an EU based NGO.  The food was ok so no dinner and got to read for a while.  For those of you who like US history, I highly recommend : ”The Warmth of Other Suns” which chronicles the migration of African Americans from the Southern US to the Northern US and the West.  Fascinating well written and thoroughly researched book that is also an oral history of three who made the migration in the 20^th century.

The second day of the conference was less well attended, by about 1/3.  I forgot to mention that the entire effort is part of an overall national program to transform social services.  They have a transformation office, and are focusing on leading practices across the board.  Drinking coffee as the day was getting ready to start, I was approached by the head of the training department to talk about The National Leadership Consortium on Developmental Disabilities.  We had a good chat about purposeful leadership development, and she promised to follow-up via e mail. 

The first speaker was a communications professional, working in the Moravian region of the Czech Republic.  She talked about how they are explaining the meaning of the change process to multiple parties, families, municipal officials, the general public, NGOs, etc.  She talked a lot about how they were were aiming to support all people in natural environments, and the challenges of explaining that concept when people are very much accustomed to and comfortable with institutional care for many populations.

The second presenter, Zuzana Filliphova, worked for an NGO that provides community services and began by saying she never worked in a institution.  A new generation indeed. She told a wonderful story about a couple who met while living in an institution, worked to get out into “Supported housing”, our equivalent to a group home and eventually, they moved to their own apartment, got married and bought a dog!  If it can happen here it can happen in Texas, Illinois, Florida, New Jersey, etc.  This one NGO has helped to move over 164 people from institutions.

She articulated five principles they follow: 1) education of people with disabilities, families and staff about the transformation; 2) Cooperation with other NGOs, the institution and municipal government; 3) Communication; 4) A quality inspection system to assure good services and; 5) Working to satisfy the people with disabilities they support.  As with all other presenters the word “clients” is bandied about regularly, though in a respectful way.  That would not fly in the US. She also spoke frankly about the challenges they are facing, from funding to staffing.

The next speaker was a person who had been in an accident, got around in a wheelchair and used a computer to type his presentation on the screen.  A fascinating tale of someone who had been institutionalized in a special institution for people with intellectual disabilities though he was an IT professional, separated from his wife and daughter and worked to get out.  He was frank about infantalization by the institution, and was proud to be living in the community with some support from a personal assistant.  When asked what he did to get “ready” to leave the institution he answered “I packed my belongings and left.”  “When I was in the institution I was like a fragile flower, being taken care of.  Now, it is up to me!”

An artistic director then spoke-proudly about not being a social service organization, but rather a performing arts academy.  They coordinate a film festival and hold small 4-6 person workshops to train people in film, stage performance and other forms of artistic expression.  Sounded wonderful.  She finished with “You know, people with intellectual disability can do interesting things.”  You can look them up on FACEBOOK- iventura

The presentation on children at risk and the foster care system was perhaps the most disturbing thing I heard.  The speaker,  leading the transformation process for children started out with “Family is the best environment for the child.”  Who can argue, but the system still relies heavily on institutional placement, partly due to insufficient social work staff, and partly to old patterns.  It is easier to place a child in the institution than to recruit, train and monitor foster families.  Some municipalities even give back $ for community supports, preferring the institutional way of services.   One of the disadvantages of local control.  She ended with “Disability is never a reason to place a child in an institution.”  Lots of tough questions from advocates and advocacy attorneys, and she seemed shaken up when she left. 

Finally a presentation by a social entrepreneur trying to set up social enterprises-cafes, janitorial business and a bakery, so that people with intellectual disability can work at regular jobs, get paid and interact with the public. Their services are limited to those with mild to moderate disabilities and he said the NGO earns 40% of the cost of providing the service.  His hope is to make these viable businesses, not dependent on fundraising or EU funds, which now provide the other 60%..  He came at this as a former creative arts professional, and got a lot of applause and good

Much of what I heard sounded promising but, of course, I heard things through the eyes of the presenters.  It would be interesting to see the supports offered and compare the rhetoric to the reality.

The day ended with a long walk with Damjan through the center of the city.  90 minutes later, back at the hotel and he faced an eight hour drive back to Zagreb starting near 6:30 PM.  Prague, in the early evening was full of people, the shops still open and restaurants and bars in full swing.  We found the train station (more on that later) and I bought a tram ticket from a vending machine after the hotel people assured me they ran every five minutes at 5:30 AM and it was only three stops to the train. 

Day one in Prague

Arrived in Prague around noon on Monday.  Mostly uneventful trip and a long ride from the airport to the hotel with someone from the conference organization who spoke not a word of English.  As I speak not a word of Czech, it was an interesting ride.  Lot of American rock and roll on the radio so that was interesting!

The Minister of Social Welfare began this conference, on Life in the Community, with a discussion of a goal of everyone living in the community with a decent life, at least that is what the translation sounded like.

Lots of questions in the morning, so I modified my presentation to talk about Article XIX's implications, and deinstitutionalization.  That it is not just about real estate but a way of thinking.  Simultaneous translation aside, 20 minutes of questions and I sense there will be more.

Lunch is over so back to the conference.  More later.

Now it is later and day 1 is done,except for the coctail party of course.

Quotes of the Day:
1) Minister of Labor and Social Affairs-Size makes it impossible to achieve what we want-people living in the community and choosing how to live."  We could have ended the conference right there.
2) Official from the Association of Towns and Municipalities-"We implement change".
3) Ivana Prihonska-Ministry of Labor and Social Affairs-"People without privacy in services deserve better."
4) Tereza Klouckova-Same Ministry-She invited me to this conference and was a participant in our work in Budapest at CEU this summer-and is dynamite!  "People with disabilities are our equal partners."
5)Milan Scerepa from the Czech National Center for Support of Social Services Transformation-an effort to reform all social services-"All groups need to sit around the table and cooperate."
6) Dr. Krupa, a PRofessor and the "Father" of Social Work in the Czech Republic-"We  must plan both the operation of social services and the treatment of all people as human beings...they are not the same thing."
7) Camille Latimier-The Inclusion International Association in the Czech Republic-"People with intellectual disab ility were a vital part of the negotiation for the CRPD."
8) Barbara Rittichova, an attorney from the Mental Disability Advocacy Center-There are 26,000 people in the Czech republic who have been declared Legally Incapacitated and Guardianship in Czech law is poorly defined."
9) Jifi Sobek-Adpontes NGO-"We must balance risk and safety but without risks there is no life."
10) Stepanka Krehlikova from NGO Harmonie - a provider of services-"Match services to the capacity of the person." 
11) Vendula Bradova-also from Harmonie - She spoke and told the story of a person who was institutionalized as a child-and moved to community living then to an independent apartment.  The person was on stage and not asked to speak-powerful story but would had been more powerful if the person got to speak a bit.
12) Damjan Janjusevic from the Association for Self Advocacy in Croatia.  He also participated in our work in Budapest this summer.  I first met him in 2005 in Zagreb.  A powerful advocate for people with intellectual disability and a good staff support person for self advocates-one of the best I have met - "Institutionalization is, on its face, a human rights violation."  and "Human rights are not charity.  If you view people with disabilities as objects of charity then you cannot respect their human rights."

All in all another powerful day in the move to implement Article XIX of the CRPD.

Off to the cocktail party now!