Chances for Children in Romania by Vanessa Cummings
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ADVOCACY
CHANCES FOR CHILDREN IN ROMANIA
ONE CHARIty’S wORk wItH vuLNERAbLE CHILDREN IN INStItutIONS
BY Vanessa Cummings
N
early 20 years ago, the world was shocked and horrified by the terrible pictures of hundreds of thousands of undernourished children caged in their cots, in filthy conditions, row upon row in the orphanages of Romania. Living like this, thechildren suffered physical disabilities as well as extreme mental disintegration. Charities throughout the world poured money and equipment into the country, and the government undertook to change the system. What’s the situation like now? While children are still being abandoned, the government has been following a program of closing the large institutions and replacing them with smaller, family homes. They have encouraged a fostering program, and they are trying to reintegrate as many children as possible into their families. So, some progress has been made. But the truth is that, according to published statistics, there are still 300
institutions housing 25,000 children in Romania. And from the viewpoint of F.R.O.D.O., the Foundation for the Relief of Disabled Children, one UK charity working in Romania and focusing on one placement center (as the orphanages are now called) in Bucharest, the children are still living in unacceptable conditions. The Need Crinul Alb houses 56 children aged between 3 and 23, most of whom have either a physical disability or learning disability – often brought on by institutionalization. F.R.O.D.O. first visited the center when we undertook a Treatment & Training mission in October 2007. This program brings over UK and US orthopaedic consultants to work alongside local medical teams to examine children with mobility problems and, where appropriate, operate on them. Two children from the center were part of this program, and over the next 12 months, I visited the center regularly to check up on the children’s post-operative progress. During my visits I saw the children tied to their beds or walking around with their hands tied behind their backs. Others were rocking silently, lost in their own world. Whenever I arrived, children would come rushing up to me, touching me and seeking my touch, eager to have someone take an interest in them, even though they often couldn’t speak. What always struck
But the truth is that, according to published statistics, there are still 300 institutions housing 25,000 children in Romania.
150 THE AUTISM FILE | www.autismfile.com
me was that there was never any activity going on – the children were just there, being supervised by care staff who rarely interacted with them, but when they did, were often harsh and physically abusive. In discussion with the Director of the center, she acknowledged that the care was well below acceptable standards. What she needed, she said, was help to train her staff on how to be with the children in a caring way and how to work with them to provide more educational activities to fulfil potential. A chance meeting with Stephanie Lord provided a real prospect of responding to the needs of the children of Crinul Alb. Stephanie has been head teacher of three schools for children with autistic spectrum conditions and has taught in Kuwait, South Africa, Tunisia, Finland, and Romania. She is a former Principal of Children’s Service for The Disabilities Trust and is currently Director of Special Education for the LVS group of Schools, which is opening a new residential school in Hassocks, West
ISSUE 31 2009
REPRINTED WITH PERMISSION OF THE AUTISM FILE
Sussex. In September 2008, Stephanie joined me on a visit to Crinul Alb to meet the Director and the Romanian authorities. With over 30 years experience, Stephanie was able to quickly identify that the children and staff of Crinul Alb would benefit hugely from a connected learning program covering good management, excellent training, connected learning, and daily living therapy. She has brought together an experienced team of education specialists who are volunteering their skills and time, including Sarah Sherwood and Jackie Doe from LVS Hassocks and Gina Davies, a speech and language therapist. With the support of the management of the Licensed Victuallers’ Charity, we are developing a program in Crinul Alb which reflects the establishment of LVS Hassocks and uses their good practice adapted for Romania.
This partnership between F.R.O.D.O. and LVS Hassocks to transform the conditions for children in institutions started in earnest in November 2008. Gina Davies has produced an account of the first visit which sets the scene for the whole program. Others, including The Autism File, have joined the partnership and are contributing skills and experience that will make this program innovative and adaptable for Romania’s cultural needs. The question of the children’s diet and how it affects the children’s behavior and potential will, for example, be addressed by Jonathan Tommey, Managing Director of The Autism Clinic and Health and Nutritional Consultant of The Autism File. F.R.O.D.O. is extremely grateful to all those interested in helping the children of Crinul Alb. Chances for Children is an exciting program and we expect it to last
for at least a year. For more information about F.R.O.D.O.’s work, please visit our website www.frodokids.org. If you would like to help the program, please contact vanessa@frodokids.org. In November 2008, a documentary appeared on British television showing the Duchess of York and her daughters, Princesses Beatrice and Eugenie, visiting orphanages in Turkey and Romania and exposing the appalling conditions in these institutions. Crinul Alb was the orphanage in Romania, and the whole world saw some children tied to their beds and others rocking in silent apathy. The Duchess of York has subsequently offered support for F.R.O.D.O.’s work in Crinul Alb.
T
rying to think of a way of making a useful and practical contribution to the F.R.O.D.O. project in Crinul Alb was a complicated problem. There was little understanding amongst the staff of what speech and language therapy could achieve, and most staff thought I would
be teaching the residents to speak. The Director of the orphanage had attended PECS training and had attempted to introduce the method, but it was not being used except for very limited 1:1 sessions. The vast majority of staff interactions with residents
were around caregiving routines and challenging behavior. It was necessary to be absolutely clear in recognizing the problems that we faced as a team. The residents in the orphanage were different ages and abilities. There was a huge range in both degree and complexity of disability and additional special needs. Challenging behavior was a big problem and residents sought attention and or stimulation through disruptive, destructive, provocative, and inappropriate interactions. The majority of the residents were nonverbal, and those who did have language spoke Romanian, and we spoke only a handful of phrases. There were lots of very needy residents and few staff. The staff were weary, disillusioned, and - it has to be said openly - skeptical. Volunteers had come and gone before! The team decided that what was needed was a framework for intervention that ensured that:
www.autismfile.com | THE AUTISM FILE 151
ISSUE 31 2009
REPRINTED WITH PERMISSION OF THE AUTISM FILE
As many residents as possible took part Activities were fun and enjoyable for their own sake Sessions were run as groups where all residents were openly welcomed Intervention created failureproof learning opportunities Any staff member could be readily involved and supported Communication was stimulated and shared Social skills were explicitly taught within a social group setting
Activities that had been developed as part of the attention autism approach were used in an adapted form. Activities were designed to be highly visual and appealing, cheap to resource, and were presented within a space that had been cleared of distractions. The lead adult presented the activity for the residents to watch, and supporting F.R.O.D.O. team members modeled the supporting role of staff, for example, demonstrating through use the effectiveness of using symbols and pictures, praising good attention to task, and supporting the structures of turn-taking when residents were taking active roles in the task. Shared attention, turn-taking and tolerance of the adult-led agenda were skills that were specifically addressed. The first few sessions had their difficult moments, but as the week progressed, sessions of 20 minutes were running with residents of hugely varying abilities. They were sharing good quality, positive experiences. They were enjoying themselves, they laughed, they remembered activities, and they engaged their attention with energy and enthusiasm. The staff slowly became involved, increasingly supporting the activity by supplying key words in Romanian and simply through sharing the experience with the residents.
152 THE AUTISM FILE | www.autismfile.com
More work is needed. So much is possible that would change the lives of both residents and those working with them.
It is a small beginning, but much is possible. The specific teaching of attention skills within what were sometimes groups of up to 20 residents was effective. The techniques used provided meaningful structured intervention to all the residents we were able to bring to the sessions. Over three days, the residents learned to share a space and an activity as a group within these structured times. A framework for teaching a core vocabulary, whether spoken, signed, or represented visually could so easily be built onto this method of working. It takes time to bring about change; old habits die hard. But in a short time, we were able to demonstrate that the residents could learn, that they could work together in groups, and that these times were interesting, joyful, and positive with few challenging behaviors. Staff members who feel weary need convincing not through talk but through specialist training and active ongoing support as the skills are mentored into place. They need to see the benefits and experience success with changed methods. They need help when things don’t go according to plan. They need inspiration, practical help, encouragement, and the opportunity to develop in this specialist field. More work is needed. So much is possible that would change the lives of both residents and those working with them.
www.frodokids.org Charity No: 1114639
ISSUE 31 2009
REPRINTED WITH PERMISSION OF THE AUTISM FILE
ADVOCACY
CHANCES FOR CHILDREN IN ROMANIA
ONE CHARIty’S wORk wItH vuLNERAbLE CHILDREN IN INStItutIONS
BY Vanessa Cummings
N
early 20 years ago, the world was shocked and horrified by the terrible pictures of hundreds of thousands of undernourished children caged in their cots, in filthy conditions, row upon row in the orphanages of Romania. Living like this, thechildren suffered physical disabilities as well as extreme mental disintegration. Charities throughout the world poured money and equipment into the country, and the government undertook to change the system. What’s the situation like now? While children are still being abandoned, the government has been following a program of closing the large institutions and replacing them with smaller, family homes. They have encouraged a fostering program, and they are trying to reintegrate as many children as possible into their families. So, some progress has been made. But the truth is that, according to published statistics, there are still 300
institutions housing 25,000 children in Romania. And from the viewpoint of F.R.O.D.O., the Foundation for the Relief of Disabled Children, one UK charity working in Romania and focusing on one placement center (as the orphanages are now called) in Bucharest, the children are still living in unacceptable conditions. The Need Crinul Alb houses 56 children aged between 3 and 23, most of whom have either a physical disability or learning disability – often brought on by institutionalization. F.R.O.D.O. first visited the center when we undertook a Treatment & Training mission in October 2007. This program brings over UK and US orthopaedic consultants to work alongside local medical teams to examine children with mobility problems and, where appropriate, operate on them. Two children from the center were part of this program, and over the next 12 months, I visited the center regularly to check up on the children’s post-operative progress. During my visits I saw the children tied to their beds or walking around with their hands tied behind their backs. Others were rocking silently, lost in their own world. Whenever I arrived, children would come rushing up to me, touching me and seeking my touch, eager to have someone take an interest in them, even though they often couldn’t speak. What always struck
But the truth is that, according to published statistics, there are still 300 institutions housing 25,000 children in Romania.
150 THE AUTISM FILE | www.autismfile.com
me was that there was never any activity going on – the children were just there, being supervised by care staff who rarely interacted with them, but when they did, were often harsh and physically abusive. In discussion with the Director of the center, she acknowledged that the care was well below acceptable standards. What she needed, she said, was help to train her staff on how to be with the children in a caring way and how to work with them to provide more educational activities to fulfil potential. A chance meeting with Stephanie Lord provided a real prospect of responding to the needs of the children of Crinul Alb. Stephanie has been head teacher of three schools for children with autistic spectrum conditions and has taught in Kuwait, South Africa, Tunisia, Finland, and Romania. She is a former Principal of Children’s Service for The Disabilities Trust and is currently Director of Special Education for the LVS group of Schools, which is opening a new residential school in Hassocks, West
ISSUE 31 2009
REPRINTED WITH PERMISSION OF THE AUTISM FILE
Sussex. In September 2008, Stephanie joined me on a visit to Crinul Alb to meet the Director and the Romanian authorities. With over 30 years experience, Stephanie was able to quickly identify that the children and staff of Crinul Alb would benefit hugely from a connected learning program covering good management, excellent training, connected learning, and daily living therapy. She has brought together an experienced team of education specialists who are volunteering their skills and time, including Sarah Sherwood and Jackie Doe from LVS Hassocks and Gina Davies, a speech and language therapist. With the support of the management of the Licensed Victuallers’ Charity, we are developing a program in Crinul Alb which reflects the establishment of LVS Hassocks and uses their good practice adapted for Romania.
This partnership between F.R.O.D.O. and LVS Hassocks to transform the conditions for children in institutions started in earnest in November 2008. Gina Davies has produced an account of the first visit which sets the scene for the whole program. Others, including The Autism File, have joined the partnership and are contributing skills and experience that will make this program innovative and adaptable for Romania’s cultural needs. The question of the children’s diet and how it affects the children’s behavior and potential will, for example, be addressed by Jonathan Tommey, Managing Director of The Autism Clinic and Health and Nutritional Consultant of The Autism File. F.R.O.D.O. is extremely grateful to all those interested in helping the children of Crinul Alb. Chances for Children is an exciting program and we expect it to last
for at least a year. For more information about F.R.O.D.O.’s work, please visit our website www.frodokids.org. If you would like to help the program, please contact vanessa@frodokids.org. In November 2008, a documentary appeared on British television showing the Duchess of York and her daughters, Princesses Beatrice and Eugenie, visiting orphanages in Turkey and Romania and exposing the appalling conditions in these institutions. Crinul Alb was the orphanage in Romania, and the whole world saw some children tied to their beds and others rocking in silent apathy. The Duchess of York has subsequently offered support for F.R.O.D.O.’s work in Crinul Alb.
T
rying to think of a way of making a useful and practical contribution to the F.R.O.D.O. project in Crinul Alb was a complicated problem. There was little understanding amongst the staff of what speech and language therapy could achieve, and most staff thought I would
be teaching the residents to speak. The Director of the orphanage had attended PECS training and had attempted to introduce the method, but it was not being used except for very limited 1:1 sessions. The vast majority of staff interactions with residents
were around caregiving routines and challenging behavior. It was necessary to be absolutely clear in recognizing the problems that we faced as a team. The residents in the orphanage were different ages and abilities. There was a huge range in both degree and complexity of disability and additional special needs. Challenging behavior was a big problem and residents sought attention and or stimulation through disruptive, destructive, provocative, and inappropriate interactions. The majority of the residents were nonverbal, and those who did have language spoke Romanian, and we spoke only a handful of phrases. There were lots of very needy residents and few staff. The staff were weary, disillusioned, and - it has to be said openly - skeptical. Volunteers had come and gone before! The team decided that what was needed was a framework for intervention that ensured that:
www.autismfile.com | THE AUTISM FILE 151
ISSUE 31 2009
REPRINTED WITH PERMISSION OF THE AUTISM FILE
As many residents as possible took part Activities were fun and enjoyable for their own sake Sessions were run as groups where all residents were openly welcomed Intervention created failureproof learning opportunities Any staff member could be readily involved and supported Communication was stimulated and shared Social skills were explicitly taught within a social group setting
Activities that had been developed as part of the attention autism approach were used in an adapted form. Activities were designed to be highly visual and appealing, cheap to resource, and were presented within a space that had been cleared of distractions. The lead adult presented the activity for the residents to watch, and supporting F.R.O.D.O. team members modeled the supporting role of staff, for example, demonstrating through use the effectiveness of using symbols and pictures, praising good attention to task, and supporting the structures of turn-taking when residents were taking active roles in the task. Shared attention, turn-taking and tolerance of the adult-led agenda were skills that were specifically addressed. The first few sessions had their difficult moments, but as the week progressed, sessions of 20 minutes were running with residents of hugely varying abilities. They were sharing good quality, positive experiences. They were enjoying themselves, they laughed, they remembered activities, and they engaged their attention with energy and enthusiasm. The staff slowly became involved, increasingly supporting the activity by supplying key words in Romanian and simply through sharing the experience with the residents.
152 THE AUTISM FILE | www.autismfile.com
More work is needed. So much is possible that would change the lives of both residents and those working with them.
It is a small beginning, but much is possible. The specific teaching of attention skills within what were sometimes groups of up to 20 residents was effective. The techniques used provided meaningful structured intervention to all the residents we were able to bring to the sessions. Over three days, the residents learned to share a space and an activity as a group within these structured times. A framework for teaching a core vocabulary, whether spoken, signed, or represented visually could so easily be built onto this method of working. It takes time to bring about change; old habits die hard. But in a short time, we were able to demonstrate that the residents could learn, that they could work together in groups, and that these times were interesting, joyful, and positive with few challenging behaviors. Staff members who feel weary need convincing not through talk but through specialist training and active ongoing support as the skills are mentored into place. They need to see the benefits and experience success with changed methods. They need help when things don’t go according to plan. They need inspiration, practical help, encouragement, and the opportunity to develop in this specialist field. More work is needed. So much is possible that would change the lives of both residents and those working with them.
www.frodokids.org Charity No: 1114639
ISSUE 31 2009
REPRINTED WITH PERMISSION OF THE AUTISM FILE
