A surprising pandemic effect
Murray GC, McKenzie K, Martin R, Murray A. The impact of COVID-19 restrictions in the United Kingdom on the positive behavioural support of people with an intellectual disability. British Journal of Learning Disabilities 49(2):138-144. https://onlinelibrary.wiley.com/doi/10.1111/bld.12379
It has been assumed that the Covid-19 pandemic and the restrictions associated with it would have a negative impact on positive behavioural support (PBS) for people with learning disabilities. However, an online survey of 58 staff who had recently completed a PBS programme revealed a rather different picture. Apart from the obvious restrictions on activities that lockdown imposed on the whole population, the interviewees reported that there had generally been a neutral and sometimes a positive effect on their support for people.
Many staff developed creative solutions for providing support. They were able to spend more good-quality time with individuals, and offered support and reassurance over the phone. They became more flexible in supporting people to become more settled and retain their quality of life, even if things had changed because of pandemic restrictions.
Respondents also felt that the person they were supporting had opportunities to make choices and learn new skills. Some felt they had thought and reflected differently on “behaviours”, leading to a better understanding of how changes affected people and how to support them to cope with changes in routine.
Drawbacks and benefits of personal budgets for carers
Turnpenny A, Rand S, Whelton B, Beadle Brown J, Babaian J (2021) Family carers managing personal budgets for adults with learning disabilities or autism. British Journal of Learning Disabilities 49(1):52-61. https://onlinelibrary.wiley.com/doi/10.1111/bld.12348
While a rising number of people with learning disabilities are accessing personal budgets in the form of direct payments in England, these budgets are often managed by someone else, typically a parent. The authors interviewed 13 family carers who manage personal budgets about their experience of setting up and managing payments for their relative with a particular focus on issues around securing suitable support and the implications for their own wellbeing.
Interviewees reported positive outcomes for themselves, such as being able to stay in employment and achieving a better work-life balance and family life. They identified difficulties in managing the dual role of professional and family carer and found they needed resilience and determination to manage the complexities of the system. Motivations for establishing direct payments included more choice and control over the delivery of support, more flexibility than traditional services and better continuity and consistency of care. There were, however, constraints on both how budgets could be spent and what was available in local areas.
Overall, flexibility was cited as a big plus, because it allowed arrangements to be less formal and more responsive.
Minority vegetarians
Bates C (2021) “I heard about the way the animals are treated and slaughtered, and I don’t like it”– attitudes of vegetarians or vegans who have learning disabilities. British Journal of Learning Disabilities, 49(1):62-71. https://onlinelibrary.wiley.com/doi/10.1111/bld.12343
This research is based on interviews with eight people with learning disabilities who are vegetarian or vegan. Their over-riding reason for not eating meat was concern over animal welfare. They cared passionately about the welfare of animals. They often found themselves in a minority among other people with learning disabilities and felt inhibited about advocating their lifestyle to others.
One interviewee felt people with learning disabilities were often patronised and not exposed to the same information as the rest of the population. Most were reluctant to push their views, citing discomfort with advocating animal rights to others. Health was also cited as a factor in people’s eating choices, with interviewees saying that they wished to avoid hazards they associated with meat eating such as weight gain and certain cancers.
The author concludes that, in their diet choices, people with learning disabilities are often seen as homogenous rather than having a multiplicity of viewpoints. Vegetarianism and veganism can offer people the chance to integrate into mainstream organisations where their views are shared but this will only happen if such organisations are inclusive.
It matters where you live
Wark S (2020) Does intellectual disability research consider the potential impact of geographic location? Journal of intellectual and Developmental Disability 43:3:363-369. https://doi.org/10.3109/13668250.2017.1310826. Also in: Clegg J (ed) (2019) New Lenses on Intellectual Disabilities. Routledge
This paper considers a point that seems obvious once highlighted but is often overlooked: the tendency of researchers not to consider geographical location as a factor in their findings. The paper makes its point well. Half of the research examined in this literature review did not give any information about geographical location of participants at all, sometimes not even identifying the country in which they lived.
Given the socioeconomic disadvantages within many rural areas and the large disparities in lifestyle and access to facilities between urban and rural settings, this is surely a major omission, the authors argue. Not taking geographical location into account in research can lead to important factors being disregarded. For example, people living in very isolated areas may have no alternatives to the services they use, staff may have little access to training, and public transport systems may be limited or nonexistent.
The absence of geographical information in many studies masks both a reliance on research carried out in built-up metropolitan areas and an assumption that most people live in such areas. The authors recommend protocols for the inclusion and consideration of geographical data in all research.
