BEARR Trust Annual Conference 2015
Support for Vulnerable Groups: Institutions and Alternatives
The BEARR Trust’s 2015 conference, which took place on 20 November, examined regional policy and practice in addressing the needs of vulnerable groups including the elderly, orphans, young offenders, and those with mental and physical disabilities. During the Soviet period, many such people were kept out of the public eye in institutions, where their quality of life was of secondary concern. Since then, there has been a move towards more humane alternatives, with many institutions closing. In a series of panels, our eight speakers offered insights into their work in the region, evaluating the progress which has been made and the challenges which remain.
The Chairman of the BEARR Trust, Robert Brinkley, began the day by thanking the volunteers and trustees who helped to make the conference possible, and the donors who enable the Trust to continue its work in Russia, Ukraine, Belarus, Moldova, the South Caucasus and Central Asia.
SESSION 1: OVERVIEWS
Dr Victoria Schmidt of Masaryk University’s Institute for Research in Inclusive Education started proceedings by providing an outline of the process of residential care reform in the post-Soviet countries. Thus far, attempts to deinstitutionalise care in the region have resulted in failure, with the number of children in institutions having increased in the post-Soviet period. Dr Schmidt stressed the need for a more nuanced, community- and family-orientated approach to prevention, crisis intervention and after-crisis placement. At present, the needs of families are subordinated and parents and guardians receive little support in their role as care-givers. This has resulted in a tendency to criminalise parental behaviour, often leading to the child being placed in an institution.
However, this process is frequently governed by a large degree of arbitrariness and a lack of transparency. There is an absence of checks and balances in place for scrutinising the decisions of social services and special commissions, including limited access to legal aid or mediation for guardians. Once in institutions, children are isolated from community networks. Not only is volunteer involvement limited, but the children’s abilities and needs are also not externally assessed. Despite this, NGOs must remain aware that the stigmatisation of institutions may result in greater stigmatisation of institutionalised children.
In developing alternatives to institutionalisation, the law must consider different levels of parental access. Although adoption is seen as positive, foster care is viewed by many as unnatural and not in line with the region’s cultural traditions. In situations such as this, external input – including from NGOs- can be important in facilitating cooperation. Especially in the current political climate, small projects can be a valuable means of creating bottom-up change.
Lumos’ Advocacy and Campaigns Manager Nolan Quigley agreed that NGOs can function well as incubators of innovation, often being best placed to change community mindsets. Discussing his organisation’s target of ending the institutionalisation of children by 2050, he cited the example of Moldova, which has seen a significant increase in foster care. There has been a parallel decrease in children in institutions from around 11,000 in 2007 to approximately 3,000 today. The country’s commitment to reducing this number to zero has been driven by international developments and supported by NGOs such as Lumos.
Nonetheless, globally around eight million children remain in institutions, including an estimated 600,000 in Russia, up to 95% of whom have at least one living parent. This raises the crucial question, echoing the previous presentation, of what support families need in order to prevent children entering institutions. The role of parents and families is an important part of Lumos’ multi-level work, which incorporates the international legal framework, governments and civil society, as well as those directly interacting with the children.
Regional NGOs can play a crucial part in linking each of these levels, combining top-down and bottom-up approaches. Through their commitment to the Sustainable Development Goals, they can lobby international organisations such as the EU, which has committed to no longer using its Structural and Investment Funds for the renovation – and therefore maintenance – of institutions. Such developments can then be used to influence other organisations and countries. Through partnerships and cooperation on the ground, NGOs can also provide opportunities for the direct participation of marginalised groups, allowing them to act as drivers of change.
The situation for NGOs both globally and in BEARR’s region is undoubtedly challenging, with funding, national and international political trends, and sustainability requiring particularly innovative solutions. Nonetheless, Mr Quigley stressed that cooperation between all levels of society means that Lumos’ goal of ending institutionalisation globally by 2050 is attainable.
SESSION 2: PEOPLE WITH MENTAL AND PHYSICAL DISABILITIES
Beginning the second panel, Dr Nino Makhashvili of the Global Initiative on Psychiatry spoke about the care available for people with mental health disorders in Georgia. She noted that the country lags far behind its European counterparts in mental healthcare, with 60 times fewer nurses creating a treatment gap of up to 90%. Only 2.8% of Georgia’s health budget is spent on mental health; enough to fund just 30 beds per 100,000 people for psychiatric care. Even fewer are available for children up to the age of 15, and there is a profound lack of care for those aged 15 to 18. The conduct and attention disorders often suffered by deinstitutionalised children are particularly prone to being overlooked.
Despite these obvious shortcomings, many patients say they would change nothing about their care, which Dr Makhashvili deemed a syndrome of learned helplessness. However, it is clear that reform is required. Those with mental health disorders remain stigmatised by society, resulting in a high rate of unemployment and isolation. More than 80% are effectively or actually institutionalised. Those in institutions frequently suffer gross human rights violations, including cruel and inhuman treatments.
NGOs have a vital role to play in encouraging reform of the mental healthcare system, through lobbying, advocacy and implementing pilot schemes. There is a particular need to counter resistance to the introduction of a flexible pathway of community-based, user-oriented services. Offering insight into the power struggle at the centre of the quest for reform, Dr Makhashvili noted that this comes not just from policymakers, but also from psychiatrists. However, overly critical reporting of the situation has the potential to damage the work of those organisations, such as Dr Makhashivili’s, which are already active in the field of mental healthcare.
Joining us via Skype from Bishkek, Seinep Dyikanbaeva outlined the situation for Central Asian NGOS supporting vulnerable groups. The Association of Parents of Disabled Children (APDC), which has been active since 1995, implements social programmes designed to integrate disabled children into society, including through raising awareness and empowering parents. It relies on funding and support from a number of international foundations to carry out its work.
The APDC also provides medical, educational and cultural rehabilitation, notably through its family-orientated day centre which enrols 20 children per year. Based on international best practice, the centre evaluates the needs of the child through early intervention and interdisciplinary care. It assists children in socialisation, communication and education, whilst also supporting parents who provide 24-hour care. The programme is also preparing three teenagers for mainstream schooling.
Inclusive education is in its nascent stages in Kyrgyzstan. Government-supported boarding schools employing assistive technology exist for children with visual or hearing impairments, and there are special classes for those with autism. However, there is a lack of special assistants. There are also courses available for young people who would like to go to university, although accessibility remains a widespread problem.
Ms Dyikanbaeva noted that the medical model of disability still pervades in Kyrgyzstan, as in much of the former Soviet Union. The APDC and other active civil society organisations are seeking to reconceptualise this in favour of a social, rights-based model centred on inclusion. The organisation’s cooperation with the authorities has enabled the APDC to make direct recommendations on the improvement and application of legislation. Kyrgyzstan thereby represents a positive example as one of the few countries in the region whose government actively engages in dialogue with NGOs.
SESSION 3: OLDER PEOPLE AND YOUNG OFFENDERS IN RUSSIA
Dr Eduard Kariukhin, founder of the Moscow-based organisation Dobroe Delo, presented his work as both a gerontologist and an activist for the rights of the elderly in Russia and the former Soviet Union.
Although the post-Soviet states exhibit considerable demographic variety, with those over 60 accounting for one fifth of the population in Ukraine, Belarus and Russia, compared to 10% in the South Caucasus and just 5-7% in Central Asia, the elderly may be categorised as a vulnerable group throughout the region. The situation is particularly pressing in Central Asia, where older people may experience destitution, neglect and abuse.
Simultaneously, civil society has neither the capacity nor the funding to meet the needs of this group, with Dr Kariukhin observing that western foundations are leaving Central Asia as well as Russia. Simultaneously only 1% of all NGOs in the region work specifically with the elderly. The lack of capacity is exacerbated by labour migration, particularly in Tajikistan and Kyrgyzstan, up to 450,000 of whose populations have applied for Russian citizenship. This results in grandparents and children being left behind, often permanently.
Meanwhile 18,000 older people are waiting to be placed in care homes in Russia. To bridge this gap, businesses are being encouraged to build private facilities. Dr Kariukhin also referenced the effects of the demographic imbalance which sees women living longer than men, resulting in a ‘feminisation’ of the aging process and requiring extra medical and social provisions.
There are hopes that a National Strategy for the elderly will be formulated by the end of the year, incorporating these issues alongside a care strategy for those with dementia. This should also assist in facilitating open dialogue between NGOs and the authorities, which has been for the most part lacking. An exception to this was the discussion in Russia following Dr Kariukhin’s presentation to the UN criticising the situation of the elderly in his country. Such public discussion is vital for an issue which affects us all.
Alla Pokras drew on her experience with Penal Reform International to highlight Russia’s treatment of young offenders; children who are vulnerable both before and after committing a crime.
Although the number of juveniles in detention has decreased from around 13,000 in 2005 to 1,700 today, this does not necessarily correlate to a reduction in crime. Explanatory factors include the falling birth rate, the lowering of the upper age limit for juvenile detention, and changes to government policy. In fact, the frequency of young repeat offenders is now higher. Of those juveniles in prison, approximately 15-17% grew up in children’s homes, although the figure receiving conditional discharges is substantially higher. The number of juvenile prisons has almost halved to 32 over the past decade, creating travel problems in a country as vast as Russia.
Nonetheless, Ms Pokras characterised the conditions for detained juveniles as good, suggesting that more opportunities exist for young people in prisons than outside through a mixture of education, professional training and leisure activities. While the juvenile justice system requires improvement, the 2012 strategy on young people advocated the implementation of international standards. The role of NGOs is particularly important in this regard, with a number providing training to officials to work in a restorative capacity. Those NGOs which have access to juvenile detention centres – such as the Krasnoyarsk Human Rights Committee – were commended for their positive influence.
SESSION 4: VULNERABLE CHILDREN
Dr Halyna Postoliuk presented the work of Hope and Homes for Children in advocating for the reform of the child protection system in Ukraine. There has been much progress in reducing the number of street children in recent years, which now stands at between two and three thousand. The number of babies abandoned annually has dropped to around 600, and fostering has dramatically increased. However, the problem of institutionalisation remains. It is frequently used by the authorities, and a 2012 poll revealed that 50% of the population consider it an acceptable option.
Attempts at reforming the system have thus far been fragmented, resulting in mainly cosmetic changes. Funding from sources such as the World Bank has been used for the renovation as opposed to abolition of institutions. Policy U-turns have also been made, with the 12,000 community social workers who were introduced in 2012 being abolished two years later. Only 1,000 now remain in their posts as a result of regional authorities having recognised the value of their input.
In this regard, Hope and Homes for Children launched a pilot project in December 2014 focused on preventing the separation of children from their families. By involving the authorities in the programme, the organisers have sought to create a sense of responsibility and ownership. This in turn helps to counter resistance to international NGOs. The project has seen positive results, including a marked decrease in institutionalisation through improvements to the decision-making process and the implementation of an early intervention service.
Ms Postoliuk emphasised that the current decentralisation process in Ukraine presents both challenges and opportunities. Child protection is not currently on the political agenda; a situation which Hope and Homes for Children seeks to change. Following the success of their pilot project, the development of a common strategy on a regional and national level is vital to planning the deinstitutionalisation process. This requires networking and partnerships between NGOs and the authorities: although the government has voiced its approval, a nationwide roll-out of Hope and Homes for Children’s pilot scheme remains some way in the future.
The necessity of sustained political will for successful implementation was also emphasised by Dr Chrissie Gale of Strathclyde University, who gave an overview of her findings based on twenty years of research and experience in Central and Eastern Europe and the CIS region. She cautioned against unrealistic expectations, noting that building a robust child protection system can take a decade or more. This requires both long-term donor support and investment in people, including the provision of support to carers, in order to generate sustainability.
Dr Gale also emphasised the need for a multidisciplinary approach tailored to the context. By contrast, some CIS child protection acts are almost verbatim copies of the UK legislation. As such, those working to support marginalised groups should work closely with national governments to create dialogue and ultimately change. Moldova, for example, has now committed to spending 2% of its education budget on inclusive education.
There also needs to be a greater focus on the reasons for children being taken into care, as at present those most in need of protection are still not identified. In Central and Eastern Europe, social reasons including poverty are the main cause of institutionalisation. In seeking to change this, the prevention of family separation through community-based support services should take precedence. Failing that, more efforts need to be made to reunite children with parents or extended families. Whilst foster care is by no means negative, it is becoming a long-term solution, leaving the child with no legal status and no permanent family.
Dr Gale raised the problematic nature of quota systems, which focus too closely on removing children from institutions whilst neglecting to prevent others from entering the system. Overreliance on inexact data should also be avoided. In this regard, a more child-centric approach is preferable, ensuring that the process of gatekeeping – returning children to permanent families whilst ensuring others do not take their place in institutions – is completed. At the same time, however, it must be emphasised that for some children, small residential provisions may in fact be of most benefit. At its core, therefore, successful child protection requires listening to the child.
In her concluding remarks, BEARR Trustee Nicola Ramsden drew together the day’s key themes. Although there is considerable variability within the region, progress on policymaking supports the trend of moving away from institutionalisation. However, the systemic nature of the care structure in countries throughout the region places constraints on the development of alternatives. In the meantime, those working to end institutionalisation must remain mindful of their huge responsibility, as criticism of institutions may result in the stigmatisation of their residents.
Despite these ongoing challenges, there remains substantial cause for positivity. This is particularly true of the work of NGOs, which have exhibited extraordinary resilience in the face of often extensive obstacles to their activities. They have experienced advocacy success at the highest levels, shaping the policies of international institutions such as the EU. They have become more adept at working with and influencing governments, as demonstrated by Seinep Dyikanbaeva. And in a change to previous years, they have also begun to develop closer cooperation with one another, building stronger alliances for the continued pursuit of an end to institutionalisation.
