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.