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!

Two day conference on inclusion in the community - and home

The last two days were filled with day-long conference participation.  What an incredible participation rate.  The 2-300 people in attendance showed up at 8 in the morning and were still going strong after 5 pm.  Real commitment to both school inclusion and deinstitutionalization.  I did two presentations, one on the CRPD and its implications for Colombia and the other on working with families around deinstitutionalization.  You can see the first one here....
 https://www.icbf.gov.co/icbf/directorio/portel/libreria/php/frame_detalle.php?h_id=8496

I used a lot of the same material I have been using, and borrowed some slides form both Michael Smull and Nancy Weiss.  For those of you who do not know Michael's work, you can find it at 
http://www.elpnet.net/



Nancy works here with us at UD, and is also a fabulous presenter.

The trip home began with a wake-up call at 4 AM, though I was already up and a quiet ride to the airport which was amazingly bust at 4:45 AM.  Got some coffee for home, candy for work and was glad for the upgrade on the flights home.  The international terminal in Miami is a zoo and, like most things in Florida, not quite right!

Off to Prague in a few weeks.  More on that leter.

Public Agency, Private Foundation a Long Walk and Dinner with Family Leaders

Thursday was a long and intense, mostly, day.  I got to take a long walk in the neighborhood surrounding the hotel after a 5:30 AM breakfast.  It felt good.  This city, at least the district around the hotel, is bustling at 6 AM!

Ines and I went to the ICBF to do a presentation.  I did a presentation on the CRPD and in particular its implications for how services and supports are delivered to the ICBF (https://www.icbf.gov.co/icbf/directorio/portel/libreria/php/03..html) the government ministry that does social protection and services for families, ranging from adoption to disability.  The presentation was coordinated by a young social worker who had been in a presentation on Tuesday, and was to be to a dozen or so officials.  It ended up being over 50 people in an auditorium, with simultaneous translation (everyone wears a headset), and lasted for about ninety minutes, with questions.  The translator was a young Colombian man, who lived as a child in Logan Utah where his father completed his PhD at Utah State University.  So when the questions came, his English was perfect.  Made it easy to answer some challenging questions.  This agency has perhaps the most things to change, and many of their practices are in direct conflict with CRPD.  They are also following national law, so practices will change, some within current law, some after the law changes.  Susanna Helfer-Vogel, from the Ministry of Social Protection, worked at both PAHO and the World Bank in DC and stayed for the presentation, and asked good questions.  A lot of questions about the process of deinstitutionalization and some about child abuse, adoption (thank you Rachel for the dinner table tutorials over the years on that topic) and people with serious and persistent mental illness and community services.  It was intense but productive I hope.

After a wonderful meal of traditional Colombian dishes (thanks Ines for ordering) we walked, on a beautiful day to Fundacion Saldarriaga Concha, set up by a business man in honor of the memory of his son with Cerebral Palsy who died as a young adult.  This organization has influence and assets, and funds services and programs for people with disabilities.  Carolina Cuevas and her mostly young staff and a board member heard the same presentation, and asked a lot of good questions about families, the process of inclusion, and how to move Colombia forward given their role and resources.  They have a lot to contribute, and will also need to change a great deal of what they have been doing.  It remains to be seen if they choose that leadership role.

Finally, a dinner meeting with the Network of Families for Change, a coalition of family groups from across the country.  Relaxed conversation, some stories about successful inclusion efforts that prove both the theory and substantiate the efforts people put into social and school inclusion, and just plain relaxation.  As is almost always the case, families will lead the charge for change, and there are enough of them in this network, with the passion and the willingness to work for it, that I feel good that change will occur.

A long day but went to bed with some hope that this prosperous hardworking nation can move forward on including people with disabilities int he fabric of Colombian society.

The good, and the not so good and the bad.

It is Tuesday October 10th and we left this AM to see an inclusive child care center, called a kindergarten here in Bogata.  Interesting.  If I viewed from U S regulator standards it would not have been good.  Building needed paint, lots of sharp edges, a fence where kids could get their heads caught, mud on the playground.  But watching the 13 kids with disabilities out of about 150 at this center, play and be part of the goings on brings a smile to a person's face.  I will post some pictures when I download them.  It was wonderful.  A rotating special educator shows up three days a week and helps the teachers figure out what will work in particularly challenging situations, of which there are few he said.  Watching teachers, support staff and other students interact with a few of the students with disabilities was sheer joy.  Natural, not posed and easygoing.  For working parents, this center runs from 7:30-5:00 daily and is closed very little during the year.  Including not being able to close for staff development.  It is run by the government directly.

We then visited an "educational" setting that was very segregated, and interestingly run not by the ministry of education but by social welfare.  Not much going on at all, and the buildings were barely accessible for those of us without mobility impairments.  As in every place we have visited, most of the students are people of color and poor.  The staff prepares, from scratch, breakfast, snacks and lunch.  For many of these students the nutrition aspects of the program are vital to their good health.  And talk about incentives in the wrong place.  If children are in these programs, they go all day 9 months a year.  If they go to inclusive schools, which are public, it is a half day only.  What are families to do?

Finally we visited a 70+ person residential institution.  If you have seen one custodial care facility you have seen them all, and this one was no different. Run by contractors, the government owns the building and there is competition to run the places-it is lucrative apparently.

Nothing much going on, again food made from scratch and a lot of cleaning happening.  But 4 or 7 people to a room, 0 personalization and a high school sized locker for all of your personal possessions.  Apparently about half the people there have been abandoned and have no family contact.  For the others, visiting is encouraged but only two days during the week and not on weekends.  I could go on, but you get the drift.  Meaningless days with meaningless activity, or lack thereof.  And Colombia both signed and ratified the UN Convention.

Dinner tonight with a varied crowd at an inclusion conference.  More to come tomorrow.

Greetings from 9,000 feet above sea level

Sunday was on of those travel days.  My flight to Miami and then Bogota was scheduled to leave at 6:00 A.M.so we stayed in a hotel at the Philadelphia Airport, literally attached to the airport and ventured to Philadelphia for dinner.  So far so good.  Lots of calls from American Airlines during the night and the 6 AM flight was finally moved to 9:30.  Being awake, went to the terminal to check my bag at 4:30 AM and, after a wait of over an hour, got a seat to Miami and was re-booked on a much later flight to Bogota.  After breakfast went through security and waited.  And waited.  9:30 became 11:45 and we finally took off for Miami.  American Airlines graciously gave those of us in steerage a granola bar for free.  Oh joy.  So, instead of getting into Bogota in the early afternoon and touring a bit got to the hotel at 9 PM and unpacked and tried to sleep.  Not much luck there.

In the morning on Monday went with Ines Escallon from Inclusion International to visit Fundacion Fe (www.fundacionfe.org).  Ines grew up in Columbia, in Bogota actually, and living in Toronto has not hampered her fluency in Spanish or knowledge of the city.  Foundacion Fe was started by a mom, of course, and she is still involved and on the board 4 decades later.  Programs there range from early intervention to programs for school age children.  The staff all wear white coats, in part because the history and funding tie back into the health agency for funding.  The challenge here is that for adults, there are essentially no services unless the family gives up custody and the person is supported in an institution by the Ministry of Protection.  Nothing except a small pilot for supporting families or for supporting people to live in the community.  The school age programs include a lot of therapy services, as does early intervention which is a clinical model of services.  Parents, mostly mothers, bring their children daily for two hours of therapy and other services.  Pretty much a huge time investment without consideration of the family's needs or other ways of providing early intervention benefits to families.  An official from the government agency ICBF was present and she seemed to understand the need for changes to the system.

After a lunch which was delicious and surely consumed an entire cow, we met with staff working on inclusion from the District Secretariat of Social Inclusion for Bogota. The city, with 8 million people, is divided into 20 districts.  The staff, including one senior official, were primarily young and, after my presentation about CRPD, asked questions for 45 minutes.  They have developed programs to include over 3,000 children in early childhood programs and are working their was into the primary grades.  What a wonderful experience.  We talked about the challenges in closing institutions and developing alternatives, and in how to change the culture which is not supportive of poor and struggling families.

Dinner was with Diane Richler and Gordon Porter from Inclusion International, along with other guests, including Ines, her sister, the Director of the Inclusion International chapter in Colombia, essentially a Down Syndrome parents group, held at the home of Ines' mother-in-law who, at 85 is going strong with some full time support.  I have been in many beautiful houses over the years but this one was magnificent by any standard, and she has lived there for 46 years and is quite the gardener.  Beautiful flowers, lively discussion and a wonderful meal.

That's it for Monday.  Off to visit more programs on Tuesday and an unexpected free day on Wednesday due to a meeting cancellation.  An enormous amount of work to be done here.  Interesting that the government signed and ratified the CRPD yet there is no plan as to its implementation.

Preparing for Inclusion Conference in Prague

Spend half the day working on a presentation on deinstitutionalization, focused on "it's not housing" and some other themes,  The conference organizers wanted it yesterday so they can translate it into Czech,  so I was only one day late! Spent the other half a day working on some background for an international prize for organizations doing inclusive work concerning people with disabilities.  More about that when it is public.

Excited about Prague.  Some strong leaders there are committed to moving forward and have done some very good work in getting people out of facilities.

More when I get to Bogata.