co-production Disability Random musings

Anyone for ice-cream?

Written for Making Chromosomes Count: (reproduced here)

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

Contact Preparing for Adult Life

IPSEA Mental Capacity and Decision Making

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