I drafted a submission for the Journal of Imaginary Research. It wasn’t accepted but that is ok, as I can just post it here instead… it was only ever meant as a bit of fun, as a way to practice more creative writing. I had no expectations that it would be accepted (though of course it would have been nice if it had been).
Since 2014 there has been a significant increase in parental complaints related to education, health and care for disabled students. It is widely acknowledged that the root cause is not school or local authority failings, rather the blame lies with parents who are increasingly unreasonable in their requests for support, seeking a ‘golden ticket’ for their child.
In an innovative study, four colourful self-service ‘Predict and Reject Education Needs Technology’ (PARENT) machines were introduced into twenty school lobbies, automating the application process for additional SEND support, minimising interactions with challenging parents. Parents were invited to complete a self-assessment questionnaire via PARENT, which using an advanced predictive software programme could quickly ascertain their future personality, knowledge of the SEND system and their resilience. It became possible to calculate their individual ‘risk’ of becoming a problem parent within just 20 minutes. This risk calculation determined what level of support their child could receive: ‘vulnerable newbies’ were signposted to a local support group, ‘happy acceptors’ were given a standard support plan, and ‘problematic challengers’ were required to attend a 12-month rehabilitation programme for those with challenging behaviours, after which they could apply again.
No risks were identified for the national roll-out of PARENT.
Professor C.A.L. Culate first became interested in risk calculations when playing marbles at school, as he calculated his friends’ comparative performance, choosing to only play against those most at risk of losing their marbles. He continues to play in local and national Marbles championships. Previous publications include ‘There are no humans, only risk factors’, ‘Risk: it is in the future’ and ‘Don’t lose your marbles’
Dr N.O. Need never had any marbles to lose in the first place. She was provided the necessary technical expertise to design and build the risk-assessment software, building on valuable experience in the award-winning Predict Every Risk In Litigation (PERIL) and Find, Eliminate And Reduce (FEAR) projects.
I.G. Nore is a PhD researcher and was the research assistant on this project. Prior to this study they spent over 15 years working in a Local authority SEND team identifying those ‘at-risk’, before being made redundant in a cost-cutting reshuffle, ironically a risk they had not considered.
Parental advocacy for disabled children and young people is a thorny issue. An issue that requires careful consideration and thought, especially as the young person approaches adulthood, and it is an issue we are having to currently navigate for our 17 year old daughter who has Down syndrome. This is new to us, as we did not have to think through what our role is as our son’s parents, as he approached adulthood. Now 20 years old, he can make all of his own decisions and can decide how and when to ask us for input or support. Of course, as he still lives at home he has to abide by the house rules (we do not have many!) and as his parents we no doubt do – and will continue to – offer unsolicited advice. However, that is the extent of our role now he is an adult.
“Advocacy is a daily task, for most families with relatives with learning disabilities, most of the time (Walmsley et al., 2017).For our daughter, our role as her parent advocates is likely to be more involved and for a longer period of time in a way that the majority of parents who have ‘non-disabled’ children do not experience (Ryan & Runswick-Cole, 2008). When a disabled young person approaches adulthood, families frequently have to continue to advocate for them within a complex and fragmented service system, a situation which demands both time and resources in advocacy efforts (Carey et al 2020, p7).
So how do we get the balance right between what we think is best for her, and what she thinks is important to her? If there are tensions and disagreements, who should get the final say? How can we ensure that we are promoting her priorities, rather than our own? How do we ensure that we are not limiting her future because of our limited imaginations? These are just some of the thoughts I have been grappling with over the last couple of years.
Parents as allies or obstacles?
Parent advocacy and activism has played an incredibly important role, for example at a collective level parents of disabled children and young people have been involved in setting up services and support groups or campaigning for the rights of all children to have an education, or on an individual level, fighting for services, challenging assessments, sorting personal budgets or sharing their stories on social media or blogs to raise awareness of challenges they and their children face (Walmsley et al., 2017).
However, it is not a given that parental advocacy and activism is always a positive thing, especially if it works to silence the voices of disabled people. Carey et al discuss some of the ways that parents might act as a barrier for their young person, including how parents:
can enter into negotiations with professionals with their own experiences and concerns at forefront of mind
might talk to other parents and this is how their views about what is possible or desirable are shaped, rather than speaking to disabled people
can imagine different futures to the one their child wants, only being able to ‘see so far’
can be risk-averse, focussing on protection
can be ableist in their understandings, for instance of what independence looks like
being present might suggest the disabled person lacks capacity to make their own decisions
Introducing the pink ice-cream van
From as early as planning for secondary school, we were keen to start putting our daughter’s wishes and interests at the centre of our parental advocacy. We were fortunate to be able to take part in a PATH person-centred planning session for her, where she was able to imagine what her future might look like within a collaborative approach bringing together her friends, family, teachers and support staff from school. At the time she wanted to both work with animals and live at Paultons Park with her best friend. She has since gone on to imagine a range of possible futures, including driving a pink ice-cream van and giving out ice-creams to everyone as she doesn’t want people to have to pay for them. Her current vision is back to working with animals, and she still wants to live with her best friend but this time in a mansion with a swimming pool, and a never ending supply of McDonalds!
A few years ago we made a pledge that we would always keep the pink ice-cream van in the plan, by which we meant we would never try to limit her vision of what she wanted in her future. Whilst the ice-cream van might no longer be in the plan, the principle of this remains…
Some closing thoughts…
To draw this to a close, I would like to leave you with some final reflections:
There are no simple one-size-fits-all solutions. Neither parents nor their disabled children are a homogenous group. So you need to do the work, to find out what is best for you and your child, and what your role as a parent advocate can and should be.
There are range of tools available to support person centred planning, which give an output that can be used as the basis of parental advocacy for instance PATH, What matters island, or Perfect week. Some young people will need more support than others to engage with these processes, but they are a great way to document what is important to them, providing us as parents as a useful reminder!
Wherever possible, the disabled child or young person’s ‘voice’ should be prioritised and not drowned out. However, it is important to recognise that ‘voice’ is not equally available to all and some disabled young people may need high levels of parental advocacy throughout their lifetime, to ensure that both what is important for them and what is important to them is built into support and service provision.
Parent advocates should take time to build relationships with disabled self-advocates and activists, to be able to recognise their priorities and also to understand some of the tensions that exist and think carefully about how, when and where they advocate. I would also recommend Carey et al’s book Allies and Obstacles as a good starting point.
Keep the pink ice-cream van in the plan! Don’t let your child’s future be limited by your own views about what might be possible. Instead work with them and the professionals supporting them to help create a way for their dreams to come true (or as close to true as possible). And have fun along the way exploring ways to do that, taking a few risks and mapping out the next steps in the journey together… Good luck!
Useful links about Mental Capacity and decision-making in law
Down’s Syndrome Association The Mental Capacity Act: Frequently Asked Questions https://www.downs-syndrome.org.uk/wp-content/uploads/2021/04/The-Mental-Capacity-Act_FAQ_RF_10.06.2020.pdf
‘The potential of co-productive partnerships with parents/carers’
As a team of researchers invested in critical disability studies, inclusion and ‘all matters SEND’ in different capacities (researchers, parent/carer, practitioners), we were inspired to create a welcoming and productive space where the meanings of co-production could be discussed between parents/carers and practitioners in Education, Health and Social Care sectors (EHC). Having created this ‘safe, inclusive’ sphere for our pilot project into co-productive partnerships, we were overwhelmed with our participants’ response to this opportunity. It became clear that the potential of co-production has not gone unnoticed to the participants in the pilot study with participants sharing their understanding, experiences and critical reflections of co-production; moreover, we discovered that there are many practitioners and parents/carers who are keen to engage with co-production to explore its impact in their individual settings and contexts. Although the pilot study is still at the final stages of data collection, the preliminary emerging themes suggest that Cahn’s pillars of co-production are, indeed, what the partnerships may benefit from to ignite a change in practice. Cahn (2000) defined these pillars as:
Treating all contributors as an asset in the community of practice
Fostering culture of reciprocity where practitioners in the field need ‘service users’ as much as the recipients needs the service.
Enabling the ethos of building cultural capital of all contributors, despite the varied knowledge, expertise, and skills they might be inputting into a joint effort to meet the needs of the community of practice.
Directing the collaborative work towards a social change that creates a transformation of practice that results in social justice.
We agree that these pillars target a significant shift in current ways of working in partnerships; however, as we describe below, these partnerships are in urgent need of an extensive change to address the power distribution between practitioners and parents/carers and establish more inclusive and socially just collaborations.
The current state of partnerships with parents/carers
The concept of partnerships with parents and carers has been discussed for more than four decades within academia, professional practice, and policy contexts. Despite an array of publications and government inquiries urging for more participatory and inclusive partnerships with parents and carers to support a better understanding and aid a more effective planning for support, these partnerships remain unequivocally problematic. The All-Party Parliamentary Groups’ (2021) report which followed the global pandemic, once again, confirmed how unsuccessful and detrimental the public services are in building relationships with families to provide an adequate support for them. Whatever measures have been trialled and implemented in practice recently, they continue to fail those of us in the society who are labelled as ‘different’. While some would argue that ‘the true measure of any society can be found in how it treats its most vulnerable members’ (Ghandi, n.d.), we argue that it is necessary to recognise how ‘different’ families come to be seen as vulnerable within society, whilst simultaneously paying attention to the expertise within their lived experiences, and how this experiential knowledge can enable more inclusive partnerships and more effective support in practice.
What will it take to ignite change, not only in people’s minds, but also in people’s hearts?
Some of the data from our pilot study suggests that the change in people’s assumptions and attitudes is more powerful in changing practice than shifts in legislation alone. Likewise, evidence of this change in practice is argued to be the main factor that could ‘convince’ the policy makers of the potential this change can have on global contexts. Moreover, some participants in the pilot study have asserted that the emphasis should be given to the affective dimensions of partnerships, as well as the particular structure and resources within which they are constructed. The values of inclusion, reciprocity, humanity and respect need to be amplified before the performative measures that often shape the partnerships in practice (e.g., assessments, interventions, capacity of services, etc.). This shift in priorities isn’t, however, aimed at disregarding the reality of available resources – it is necessary to create a change in everyone’s perceptions about the value of human relationships in the world where those relationships are often dehumanised and can amount to impersonal exchanges where value is given to statistics, ‘tick boxes’, forms and presumptions made by practitioners. We hope that by enabling that change in perspectives, resources will be allocated according to needs, rather than needs being allocated according to resources. Likewise, we are becoming increasingly convinced that by engaging in co-productive partnerships, the pernicious divide between ‘them and us’ within partnerships will be addressed and provide a platform to create more spaces where conflict could be disarmed and replaced with inclusive dialogue.
Furthermore, by enabling the parental stories to become influential upon the trajectory of the mentioned partnerships, we believe, practitioners in the field will be able to consider their own assumptions about ‘difference’, perhaps even giving a way to treating it as a variation of humanity, rather than any type of deficiency (Garland-Thompson, 2005).
Can co-production provide an alternative worth trying out?
Despite the compelling principles and potential for a societal change in partnerships working, co-production isn’t flawless – it is an often undefined concept and requires a great shift in traditionally embedded practices.
However, at times where proposed frameworks for partnerships refer to parental advocacy as a ‘terrorist behaviour’ we believe, there is a greater imperative than ever to seek and trial alternative frameworks, to prevent further damage to families and the children who have been ‘forgotten, left behind and overlooked’ for far too long by the policy makers, public services and us as a society (see figure 1 below). We think it demonstrates how, more than ever, we need urgent discussions about how to generate more positive and productive relationships, where parents are neither blamed nor demonised for wanting support that meets their child’s needs.
Therefore, we invite you to engage in the continued evaluation of a proposed framework for co-productive partnerships with parents/carers (Fleming 2021) (see Figure 2 below).