Mum and dad must let go

Case study

The names of the service user, his parents and personal assistants have been changed

Situation: Christopher Chambers is 28 and has Down’s syndrome. He lives in a self-contained in the basement of his parents’ house, which was converted for him four years ago. His mother, Alice, is head teacher at a privately run residential school for children with learning difficulties, which Christopher attended. His father, Tom, is the school caretaker and also has use of the caretaker’s house on the school land. Alice and Tom have permission to use this house for short-lets for their friends and family

Problem: Christopher is reasonably independent. He has been in his part-time job (he is an advocate worker) with a council-funded project for a year. A friend of his parents, Martin Collier, 45, has been staying at the caretaker’s house. About a month ago Christopher’s personal assistant, Alison, 22, whom he employs with direct payments, quit to take a gap year touring the world. Christopher was convinced by his parents to employ Martin. However, Martin has made it clear that he sees his role as supporting Christopher to have fun and nothing else. Christopher is desperate to be more independent from his family and wants to learn about “money and stuff”. Christopher also wants to go to pubs and to nightclubs with support from Martin but Martin has promised Christopher’s mother that he will tell her about everything that Christopher wants to do. But Christopher feels obliged to keep him on because of his parents – who do have a strong controlling influence on his life.

Practice panel
Learning disabilities team, Bath and North East Somerset
(Mike MacCallam: Joint commissioning manager, Banes learning difficulties services ; Linda Waltz: Clinical psychologist, Avon and Wiltshire Mental Health Trust ; Helen Thompson: Social worker, Bridges Community Learning Disabilities Team ; Sharon Day: Behavioural nurse, Bridges Community Learning Disabilities Team ; Andrew Luff: Clinical lead nurse. Community Learning Disabilities Team, Banes primary care trust)

Panel responses

Mike Maccallam
It seems as if there is a brick wall between Christopher and the life he wants to lead and that wall has been erected by his parents. No doubt with the best intentions, Alice and Tom have sought to ensure that Christopher’s needs of accommodation and support have been catered for.

However, in converting the granny flat and convincing Christopher to employ Martin, they have sent him the message that they will continue to make the key decisions about his life and, as he has never known anything any different, he now feels powerless to stand up to them.

At some point all parents have to realise that their child has become an adult and has wishes and desires about how they want to lead their life. If Alice and Tom have received messages throughout Christopher’s life, either directly or indirectly, willingly or reluctantly, that he will always need to be “cared for” or “looked after”, how easy are they going to find it to contemplate the idea that actually he is perfectly capable of making his own mind up about what he wants to do and how he wants to do it? They will have to accept that the challenge they face is to determine the level of support that Christopher wants in order for him to lead his life independently.

Christopher’s situation highlights the need to begin preparation for adulthood and living an adult life, at the earliest opportunity with families and parents of people with learning difficulties.

Commissioners of services may need to work with families to prepare for the future by early investment in good transition planning, based on a person-centred approach, to facilitate a move away from the family home to develop independence, rather than encouraging families to continue to accommodate their son or daughter because it may happen to be the most expedient and cost effective solution to the local authority.

There also needs to be more effective joint working between adult and children’s services, including education, to build parents’ confidence over time that an independent lifestyle is an achievable aim for their son or daughter, and one where they will feel able to let go, knowing that the support will be there, albeit not necessarily within their control.

Linda Walz
It is often difficult for parents to accept that their child has grown up and can make their own decisions about their lives. This is even more difficult when their child has a learning difficulty as they have been used to protecting them from the risks and dangers of everyday living and from possible rejection and ridicule by society.

Alice and Tom presumably feel they have done the best for Christopher by converting the flat and encouraging Christopher to employ somebody they trust to provide his support.

Unfortunately, by doing so they have failed to listen to what Christopher really wants. He is stuck with a support worker who is much older than him, who is only interested in socialising, while Christopher wants to develop his independent living skills, and who will report back to Christopher’s parents on what he does. The loss of Alison and her replacement by Martin may have been the catalyst to make Christopher re-evaluate his home situation and relationship with his parents.

Christopher needs help to understand that as the employer he does have the right to draw up the job description and to employ who he wants. This could be through the person who helped him set up the direct payments. Maybe he could be supported by somebody from the advocacy project where he works. It would be useful for Christopher to be supported to really think through what his wishes are for his future and to develop his self-advocacy skills to assert himself with his parents. It may be that he wants to move away altogether from the family home.

Once it is clear what Christopher wants, skilled family work will have to be carried out to ensure that this can happen without alienating his parents. This could be by a social worker or a psychologist facilitating family meetings where issues can be raised and discussed sensitively or may be through the person-centred planning (PCP) process. A well-facilitated and sensitively handled PCP should help all involved to find a constructive way forward.

Tom and Alice may need help in recognising Christopher’s abilities and in managing their anxieties about his more independent future. The local carers’ network could be a useful source of support to them.

User view

This is wrong. It’s up to Christopher who he employs as his personal assistant not the parents, writes Tamanna Choudhury. To me, it seems as if his parents aren’t listening to their son. He is an adult and his parents should not be controlling his lifestyle.

Christopher says he wants to learn more about money and being independent, but Martin has said to him that he only wants to teach him the things he wants Christopher to do, and that’s not right. It sounds like Martin is more interested in going out and having a good time – I also wonder who is paying for the drinks at the pub when they are out – it definitely shouldn’t be Christopher paying for them all.

Martin should ask Christopher directly what he wants to do with his life and do what he says and he definitely should not be going behind Christopher’s back and telling his mum what he does when he’s out and about that isn’t anyone’s business but his. Christopher needs to know that it’s his life and to really stand up to his parents.

He could get support from joining a self-advocacy group where he can be supported to speak up for himself, or he could speak to his colleagues at work, there may be people there who have been in this situation and they can advise him. If that doesn’t work he will have to go to the council and get himself an advocate to support him to get his views across at home. Like me, Martin needs to talk to his mum until he’s blue in the face and she has understood what he’s saying.

The other thing he could do is just go ahead and employ someone he likes himself through direct payments – it’s his choice, he is an adult. He could also try and talk to Martin directly.

Christopher is only 28 and Martin is 45, so maybe Martin is a bit old fashioned and doesn’t realise that people with learning difficulties can be independent and that they’re not children. He might also have a better time out and about at nightclubs and pubs with someone nearer his own age, like Alison. He could even employ two workers, one who is a good teacher and can teach him about independence and another who’s fun to go out with.

The main thing is, if he is worried about standing up to his family he should get support from other people to help him do that.

Tamanna Choudhury is a member of the Respond Action Group, a consultative group of people with learning difficulties. She has also been involved in the self-advocacy movement and has worked for People First for four years