Mary, a 26-year old Zimbabwean refugee living in London, stands less than one and a half metres tall and walks with difficulty, a result of restricted growth due to a condition that makes her bones brittle and vulnerable to breaking. Each time she breaks a major bone she faces months in hospital. For this reason, she is terrified of stairs and other such challenges.
It seems surprising to learn, therefore, that when she first claimed asylum in the UK, the UK government’s asylum support service housed her on the second floor of a building without lifts and with no additional support for her condition. As her story unfolds, a litany of barriers to appropriate support is revealed. To overcome these, she has taken great strength from both her own spirit and determination and also from the emotional and practical support of a local Zimbabwean women’s group, whom she describes as ‘aunties’ to both her and her child. She is quick to emphasise that some individual doctors and social workers have also gone beyond the call of duty to help her but that these have been exceptional cases in a bigger system of health and social care support for disabled asylum seekers and refugees that appears to have failed her. It appears her case is far from untypical for others in her situation.
There is a significant gap in support for this population, compounded by the complexity of law around asylum and disability rights and entitlements, by their refugee-specific needs and by inappropriate provision from those with a duty of care. Anecdotally, it appears that disabled refugees and asylum seekers rely on friends, family and refugee community organisations (RCOs) rather than on the extensive network of mainstream disability agencies, statutory and voluntary, in London.
During the course of the research it became clear that there is a significant lack of official data, confirming the hypothesis that this was a ‘hidden’ population. Both central and local government agencies spoken to do not keep accurate records of how many asylum seekers or refugees are disabled. Voluntary agencies, from large disability charities to refugee support agencies and small community organisations, either do not keep count of disabled refugee clients or else use widely varying counting methods. Larger disability charities appear to have very little contact with disabled refugees and asylum seekers, often do not know whether or not their clients are refugees or asylum seekers and are also unclear as to their rights and entitlements. So most of this population go to RCOs for support. There they find assistance which is both in their own language and culturally appropriate.
Rizgar runs a very busy Kurdish disability support organisation from one cramped room. Surrounded by piles of papers, and with worn-out furniture and an ageing computer, Rizgar works seemingly around the clock, and mostly alone, to offer an impressive depth of support, from form-filling to home care, from legal representation in claiming benefits to interpreting. This is provided on a minimal budget, with volunteers playing an occasional but crucial role. Rizgar’s situation is typical of the disability RCOs we spoke to.
Such groups often provide a less tangible but no less important role: the opportunity to meet others from a similar cultural background, and engage in mutual support, for example with childcare. But RCOs are hampered by limited resources and find it difficult to keep up to date on relevant legislation.
Confusion about entitlements is a barrier to access to services at all levels, and asylum support law is a complex area. There is a stark contrast between the experiences of asylum seekers and refugees seeking assistance from statutory service-providers. While refugees had mainly positive views, asylum seekers had experienced great difficulties due to the complexity of the law around their entitlements, confusion and lack of knowledge about entitlements amongst social workers, contested responsibility for asylum seekers with care needs, and a reported wilful reluctance by some social services departments to assume responsibility.
A crucial issue impacting on the statutory support received by disabled asylum seekers and refugees is immigration status. With social services, as in so many areas, immigration status appears to determine the quality of the support received. Despite a statutory duty to assess people with disabilities regardless of their immigration status, and provide appropriate care, asylum seekers appear to be in some cases refused this service. In addition, the law was felt to be applied inconsistently and inappropriately, with statutory agencies trying to offload their responsibilities onto each other and with confusion about entitlements. The asylum claim process itself posed extra challenges for disabled asylum seekers and refugees, such as lack of provision at asylum interviews for deaf interpreting.
Language is also a major barrier to accessing mainstream support. Although this affects refugees and asylum seekers generally, it has a disproportionate impact on those who are disabled because of their probable need for good support networks, especially if they are far from friends and family. It therefore compounds the isolation which disability may already cause.
There is clearly a significant support gap between the specialist refugee sector and the mainstream disability sector. While RCOs play a crucial role, resources are over-stretched and they are falling short of comprehensively meeting the needs of this population. Most mainstream organisations are also failing to meet these needs, because individuals are not being referred there, because they are confused about eligibility or because they are seen as inaccessible. Disabled asylum seekers and refugees are therefore falling through the net in terms of overall support. With mainstream providers doing little to reach them and current funding trends threatening to further weaken RCOs, this gap is likely to widen.
RCOs also seem to be characterised by organisational precariousness due to a number of interrelated factors. One of these is the competitive funding environment, in which small RCOs are not only disadvantaged in comparison with larger organisations which are better equipped to bid for service contracts but also in direct competition with many other RCOs. Another factor is a shortage of professional staff competent in fundraising, reporting, policy advocacy and understanding UK voluntary sector systems and structures, often compounded by language difficulties. This marginalisation is likely to continue, just as the increasingly restrictive policy environment and exclusions from benefits and resources will continue to put pressure on RCOs to provide a much needed safety net. The report recommends to all statutory and voluntary organisations as well as RCOs that they improve data collection on numbers of disabled asylum seekers and refugee clients and the nature of their disabilities, and that mainstream disability organisations and local health and social care services actively pursue joint working opportunities with RCOs, and vice-versa.
Neil Amas (Neil.Amas.email@example.com) is director and Jacob Lagnado (Jacob.Lagnado.firstname.lastname@example.org) is research and information officer at the Information Centre about Asylum and Refugees (ICAR) (http://www.icar.org.uk/)
This article is based on research undertaken by the Information Centre about Asylum and Refugees and commissioned by the Metropolitan Support Trust, which wanted to understand exactly what kind of support disabled refugees and asylum seekers were receiving and from whom.[i]