Day 1- Trip to a Residential Institution
I’m married to J.K. Rowling (Jo), who founded Lumos in 2005. Over the past 12 years I’ve been fortunate to meet some of the phenomenal people who work for Lumos, and heard about the life-changing achievements of the charity. But, until this year, I hadn’t visited the countries where Lumos operates to see this for myself. As a doctor working in the UK for over 20 years I’ve cared for many children and young adults with severe disabilities and complex care needs. I’ve also seen patients with some of the rarer infectious diseases, including leprosy, in different parts of the world. A trip to Moldova in Eastern Europe was something new for me, and I wasn’t quite sure what to expect. However, I was privileged to have Georgette Mulheir (CEO of Lumos) as my guide.
We landed at Chisinau International airport on a very cold but sunny, January day and went straight to the Lumos office in the capital where I was introduced to Lumos staff Dr Irina Malanciuc (director), Domnica Ginu and Valentina Ghenciu. After a quick lunch of salad and pizza we headed off in the car to the town of Orhei, 50km north of Chisinau.
The residential institution in Orhei was created during the Soviet era for the institutionalisation of boys (age 6 to 18 years) with mental disabilities. It continues to be run by government, under the Ministry of Labour, Social Protection and Family.
Considerable efforts had gone into trying to keep this building “hidden”. We drove through the town and out the other side, passing a large graveyard where finally, at the end of the road which had become progressively icier, we came to a high wall with large metal gates. Security guards told Marcel, our driver, the car must remain outside, so we got out and walked down a treacherous path to the front door.
We were met at the door by Diana, the director of the institution, and invited inside. It was a vast structure with long cold corridors, concrete floors and high ceilings. A resident with an artistic flair had painted large murals on some of the walls which added a touch of interest and colour.
Not far from the entrance was a lobby area with a rug, a few chairs and a couple of potted plants, where we met Marius*. He was 20 years old and had been in the institution since the age of 4, after being abandoned by his parents. Marius has a physical disability affecting both legs which limits his mobility. Clearly very intelligent, bright, and engaging (and very politically savvy!), he told us about a recent trip he’d made to a summer camp in Switzerland. Later on, we got to see his musical abilities. With great pride, he took us to view his numerous music awards and certificates. He had a fantastic singing voice, and we were treated to a couple of Moldovan songs. Marius had no difficulty navigating the corridors unaided in his wheelchair and, at times, he opted to crawl across the floor which he found to be quicker. He was very excited to tell us that he would be leaving soon, to live in a small group home within the town.
Marius has a physical disability affecting both legs which limits his mobility. Clearly very intelligent, bright, and engaging (and very politically savvy!), he told us about a recent trip he’d made to a summer camp in Switzerland.
Before we embarked on a tour of the building, Diana took us to her warm and comfortable office on the 1 st floor. She was relatively new to the job, in post for just over a year. With her background in “deinstitutionalisation”, she was proud to have made some improvements in her short time. Her achievements included securing the funds to purchase 2 houses in town, with a plan to move 10 residents into community care. Diana was keen to do more, and was clearly grateful for the Lumos team’s support and advice.
The institution at Orhei currently has 208 residents (61 children and 147 adults). The numbers of children there have declined steadily over the past 7 years (from 147 in 2010) mainly due to a change in the way babies and young children with disabilities are managed in Moldova. The majority of residents (121) are between 19 and 30 years, and although this institution was created for children, these young people have had to remain due to a lack of alternative care. Reform of this particular institution started in 2008 with the support of another NGO and I learned that Lumos’ involvement has been fairly limited until now. Definite progress has been made since 2008: 136 residents with disabilities have been “deinstitutionalised”, and a further 60 children have been prevented from admission. No children entered in the past year. Those who remain in the institution have been the hardest to place in the community due to their more severe disabilities or challenging behavioural problems.
Diana seemed particularly proud of her staffing ratio, which unfortunately didn’t stand up to much scrutiny. 180 staff for 208 residents. “That’s nearly 1 to 1”, she said. But, that’s not even 1 to 1 in simple maths, and it was far from true in terms of actual ‘carer to child ratios’. Her figures included all her staff (administrative, kitchen, laundry etc) and didn’t take rotas and shifts into consideration. The reality, as I was about to see, was that 8 severely disabled children were being looked after by 1 carer, a pattern which seemed to be repeated throughout the whole building.
Diana seemed particularly proud of her staffing ratio, which unfortunately didn’t stand up to much scrutiny. 180 staff for 208 residents. “That’s nearly 1 to 1”, she said.
In the first room we were shown we met 8 boys (and a single carer) watching TV. All seemed small for their age. They were dressed in clean, warm clothes, and most were sitting in wheelchairs of varying degrees of quality and design. A silent boy at the far side of the room was exhibiting odd repetitive movements with his hands and legs; all typical signs of institutionalisation. Others became increasingly excited by our presence, calling out for attention and holding out their hands for us to hold. Some had very tight grips, reluctant to let you go. The largest boy (although not actually that big) was in tears, and we were told he had “painful hips”. Another boy (who was blind), had been clinging to the carer, and was now clearly upset by the noise. He crouched down into a ball, put his hands over his ears, and rocked forward and back.
Within the space of only a few minutes I witnessed many of the key features seen in Adjustment Disorders. Some of the boys showed signs of Reactive Attachment Disorder, characterised by a difficulty calming down when stressed, while not seeking comfort from the carer. However, I was more struck by those boys who were over-friendly, desperate to reach out to a complete stranger. This is in keeping with Disinhibited Social Engagement Disorder, which makes them high risk targets of abuse and trafficking.
Room 2 contained another 8 boys. At an initial glance, their level of disability seemed to be more severe than those in the first room. My eye was drawn to a tiny boy in the bed at the far corner of the room who was being fed by a carer. I asked how old he was, and was told “age 20”. As I was trying to comprehend how a 20 year old could be so miniscule, Georgette asked me “What do you think is wrong with this boy?” and led me over to another child. His name was Alin*, 15 years old and just as small, but fully dressed and sitting up at 45 degrees in a chair. I found out later he weighed just 11.5kg, the weight of a healthy 1 year old. His chest has heaving, and it appeared he was struggling to breathe. I pulled down his jumper to reveal an emaciated chest, and signs he was sucking in all the soft tissues around his ribs with every attempt to breathe. He had an obstructed airway. I gently put my fingers behind his jaw and pulled it forward resulting in a loud groan and a deep inspiratory breath. He smiled and looked into my eyes. His mandible was very mobile, and it seemed he lacked the strength to stop it falling backwards. We were told he had previously been to hospital for this problem, and there was some suggestion that a swelling in his throat might have been removed. The carer told us his condition was not new and they were aware of his breathing difficulties, which were “not so much of a problem when he was lying on his front”. Nonetheless, every time I let go of his jaw he reverted back to near-complete airway obstruction. I suspected, given the poor staffing ratios, that he would not normally have been dressed and out-of-bed. Putting him in the chair that afternoon nearly resulted in his death. It was clear he needed urgent admission to hospital. Irina and Domnica contacted someone from the Department of Health to facilitate his admission, and later that evening he was taken into the Paediatric Intensive Care Unit in Chisinau.
On we went through the institution. Rather than continue with a room by room account, I will jump to the wing where those with the most profound disabilities are cared for. It had become dark outside by the time we reached this area, and it was particularly bleak. This was the nursed-led medical area for those with the greatest care needs, including those who required more specialised tube feeding systems. Some had microcephaly (mostly due to foetal alcohol syndrome), and some had behavioural problems. Boys resided in 2-bedded rooms, and it had been chosen to locate this service here because it was the area of the institution where the heating worked best. Still the staffing ratio was the same: 8 profoundly disabled children (in 4 separate rooms) to 1 nurse. The nurse gets no breaks during her 12 hour shift. The boys themselves don’t leave their own rooms.
How do I reflect on what I saw?
I’ve never seen anything like this institution before. I couldn’t understand how the boys could be so small. It was not like any growth disorder I might see in UK General Practice. It appeared to be “failure-to thrive” on a massive scale, resulting in lots of tiny human beings. The consensus from the local specialists was that this results from a combination of emotional neglect, malnutrition, and (often) an underlying chronic neurological condition. And it’s the emotional neglect (or lack of love) from an early age which probably has the biggest impact of all. The carers I met appeared to be well-meaning and kind, but there also seemed to be a deeper, subconscious desire (at an institutional level) to keep these kids small, through chronic malnutrition. When you stop to think about it, if you are the sole carer looking after 8 boys (age 15 to 20) it certainly makes it easier if they all weigh the same as a healthy 1 year old.
I’ve never seen anything like this institution before. I couldn’t understand how the boys could be so small.
Day 2. Inclusive Education and community visits
My second day in Moldova was uplifting and inspiring, full of some the incredible achievements accomplished by the local Lumos team. It was all about life outside of institutions.
I learned how Lumos works in partnership with governments, professionals and carers, communities, families and children, to replace institutions with community based services that provide children with access to health, education and social care tailored to their individual needs.
We travelled to the Ialoveni district, which is located in the centre of the Republic of Moldova, 14 km from Chisinau. I visited schools, a family home, a foster home and a small group home and met many of the people involved. The day ended with dinner in Chisinau in the company of several government ministers.
This turned out to be a more formal visit than I had anticipated. We were greeted by the local Mayor and a group of children in national dress. After visiting several classrooms we were entertained with some superb dancing, and invited to join in.
The inclusion of children with physical disabilities and/or learning difficulties into mainstream education is very new in Moldova. This school was an excellent example of how it can work. Parents and teachers told us about their anxieties leading up to the children starting at Kindergarten. Both sides wondered “how will we cope?”. Parents worried about whether their children would be accepted, and how they would respond if they were teased. No such problems occurred, due to the huge amount of preparation Lumos was able to provide. Using the experience gained from leading worldwide experts in the field of inclusive education, Lumos ensured everyone involved was fully trained, that there were sufficient support teachers in place, and new policies and changes to the curriculum were made in advance.
High School Inclusive Education Unit
Across the road from the Kindergarten is the main High School. With the support of local government, Lumos funded and built a state-of-the-art inclusive education unit (IEU) which is attached to the main school by a link corridor. World experts in education, health and design were consulted, and the end result is remarkable. It is bright and very welcoming. The artwork is inspiring, and the numerous pictorial signs are perfect to guide people around. We saw the large class-room, soft-play/ physio areas, speech therapy rooms, and my favourite space: the quiet room with special lighting effects. Everything is ideally suited for disability access, including the toilets and showers.
I met a mother with her autistic son, who is now a teenager. She had looked after him alone at home until a few months before, when the unit opened. This was his first experience of education. In tears, she told me how he had made friends for the first time. It has been life-changing for their whole family.
Many of the children/young people attend classes in the main school and then receive extra support in the unit. Some are starting education for the very first time in their mid-teens, and the speed at which they are learning to read and write is impressive. Pupil volunteers from the main school help out in the IEU. Again and again I heard how they felt accepted within the school and that they thought society as a whole was changing.
After lunch with several local and central government officials, I joined 10 students in the pupil participation group. All had been in institutional care at some point due to either a physical disability or a learning disability. It means the world to them to stay at home and attend an ordinary school. Several of the students had previously stayed in a residential institution from Monday to Friday to receive their education, because they were not allowed to attend their local school. They spoke of tears on a Sunday night before the trauma and stigma of the bus journey to the institution on Monday morning. Some cried for most of the week until it was time to return home at the weekend. Traumatic and distressing; certainly not an environment in which to learn anything. One boy spoke of the darkness he felt, and how he just saw “black” in his institution. With no hope, what was his future going to be?
The students I met feel their lives have now been transformed. They have “a voice”, they “want to make a difference in the world”, and want to fight for Inclusive Education for all.
Back in the car again, and off to Tipala village to visit a family home, where we met Mum, Dad and their 16 year old son. Their 19 year old daughter is now in 1 st year of college, so she wasn’t at home. Both children were born with neurological conditions and suffered from some developmental delay. It had been compulsory for them to attend a residential institution for their education (Monday to Friday), which they did for more than 6 years, because there was no such thing as Inclusive education at the time. I heard how traumatic it was for both children travelling to, and staying, in the institution.
The son now attends the local school, which is only 300m from his house. Again, the whole family expressed their anxiety about whether they would be accepted, but like the kindergarten families, they said it was “all good” from day one. A considerable amount of input from Lumos ensured this smooth transition. Preparation within the school and work with the family was required for this to work. The whole family are delighted to be able to live at home together. Lumos also helps the daughter at vocational college, with dedicated lesson plans and guidance for tutors.
Foster Home and Small group home
For those children who don’t have a suitable family to return to, care provision can be arranged in the community by local authorities.
The concept of Foster Care is very new in Moldova, but one which is being embraced. Working with Local Government, Lumos has helped with all aspects of setting up systems for fostering, such as training social workers, devising protocols, and occasionally enabling house alterations. I met two delightful young girls (aged 5 and 7, from different families) who had essentially been abandoned by their own mothers, now living with their new foster mum at home in a village in the Ialoveni District. Both girls had settled well into their new home, and were very happy at a local primary school. They receive allowances from the local authority for clothing and food.
The final stop on our tour of the country took us back into Ialoveni City, where we visited a small group home for children at risk. This specialised service was created in 2013, in the same year when Ialoveni’s special residential institution for children with polio and cerebral palsy was closed down. We met 10 children (8 boys and 2 girls, aged between 11 and 16), with a mixture of backgrounds. Half had no family, and the other 5 came from vulnerable families. Nearly all had been in institutional care in the past. All of them are now receiving education at the local schools, some with an adapted curriculum depending on their previous educational attainment.
The building was a modern, purpose-built large house, which felt much more homely than any institution. We had a quick tour of the rooms before gathering with the residents around the kitchen table covered with local culinary specialities. A total of 10 “specialists” are employed by the local authority to run this home and this includes a Director, 8 social workers and a cook, many of whom were former employees of the special residential school that closed down.
Dinner with Government Ministers
It was already dark and approaching early evening when we left the small group home in Ialoveni, and we needed to get back to the capital to meet up with several government ministers. Dinner was planned at a restaurant near to the Parliament in Chisinau. Developing a good rapport and a working relationship with key people in Government has been essential to achieve any meaningful change in Moldova. Round the dinner table were ministers from the departments of finance, health and education, all of whom have worked with the Lumos team.
The essential “bottom line” fact, and one that often surprises people unfamiliar with the issues, is that it is more expensive to look after children (and adults) in institutions than it is for them to receive care and education in the community. Large institutions are very costly to run. So, if this money can be “ring-fenced” and follow the child out into the community, not only are the children immeasurably better served and safer, there should be an overall cost saving for the country. Workers within institutions worry about losing their jobs, but as I had already seen, with shifting roles there can be as many new work opportunities out in the community.
Deinstitutionalisation is not easy work. The continued determination shown by the whole Lumos team in Moldova to achieve these changes is quite inspiring. Sometimes when progress is made, it throws up additional challenges, requiring a strong political will, and political support, to overcome. Changes in the mechanisms of central and local government funding are part of the answer. Occasionally new laws are required, such as a new national educational curriculum and exam structure to accommodate students who may have missed schooling or who have learning difficulties. This allows pupils with learning difficulties to complete school and proceed to higher education. My dinner companions had worked on all these areas.
Dinner was very relaxed and enjoyable, and I’m hugely grateful to Georgette (Lumos CEO) for being an incredibly patient and skilled interpreter. During dinner I learned about the local custom of “toasting”. The drinking of alcohol waits until a toast has been made, and a new toast is required each time another bottle arrives at the table. And, dinner continues until everyone at the table has made at least one speech and proposed a toast. A custom ideally suited to politicians!
Update on Alin
On the final day which, Georgette and I went to see Alin (the 15 year old boy from Orhei) in hospital, on our way to the airport. We found him in the Intensive Care Unit of the specialist children’s burns unit. He was awake and sitting up in bed, already looking a little better after receiving some intravenous fluids. The doctors explained that they were waiting for maxillofacial surgeons to assess him and we spoke about his malnutrition. Their plan was to transfer him to a ward where specialist paediatric nutritional support could be given.
On the final day which, Georgette and I went to see Alin (the 15 year old boy from Orhei) in hospital, on our way to the airport. We found him in the Intensive Care Unit of the specialist children’s burns unit.
I left the hospital thinking that we’d done the right thing getting him there but, given his very low body weight, his chances of survival must be very low. When I returned home and told Jo about my trip, I said to her that I thought Alin was very likely to die.
However, to my delight, there is good news. Lumos was able to help with a care package for Alin. After a month, he gained 1kg, and with a further 2 months of nutritional support his weight gain was up to 3.5kg. Alin is much brighter and stronger, however he is not out of the woods yet. Lumos colleagues are still looking at what further medical intervention he may need and are seeking a foster care family in the community.
In 2015, Lumos won the overall Charity of the Year award at the prestigious UK Charity Awards, largely due to the incredible success of the project in Moldova to create a new and truly inclusive education system for thousands of children with disabilities. Lumos has also been instrumental in reducing the numbers of children in Moldovan institutions (by over 80%). The job is not done yet, and many obstacles still lie ahead. It was a huge privilege to meet the very inspiring individuals who make up the Lumos team in Moldova, and if anyone can rise to these continuing challenges, they can.
*Names of children have been changed.