Solve my dilemma

Our panel provides advice for a young woman who wants to be more independent but, her family is unconvinced.

The dilemma

"You have been to visit an 18 year old young woman. She's presented as having a learning difficulty, but the family, who she lives with, did most of the talking.  You are aware that, at school, she was far more independent in mobility and independence skills, than the family are aware or acknowledge. She says she would really like to do more for herself, but her family appears unconvinced. What strategies do you use to work with the family?

Pete Lock, Children's Mobility Instructor, Northern Ireland

"This is quite a common scenario that can be found across the wide spectrum of ages that we work with. It is one of those occasions where the rehabilitation worker almost assumes the role  of a social worker initially, trying to advocate and support the young woman in making her feelings and thoughts heard.

Lack of confidence could be a key factor here from both parties: for the young woman it may be a lack of confidence to speak out and express herself and from the family’s perspective, it could be their lack confidence they have in their daughter to perform such tasks.

The former could be addressed through confidence building lessons to aid development, interpersonal and communication skills.  I would speak with the young lady on a one-to-one basis, possibly meeting in school to ascertain what her wishes were and then arrange a meeting with her and family to discuss this.

Building the family’s confidence could be increased by feeding back observation from school, or by getting the family to visit the school and observe their daughter mobilising and performing daily living tasks. It is also important to provide opportunities for the family to give reasoning for their concerns.

If the skills are well-honed at school than transferring to the home should be relatively straightforward providing the environment is safe and risks minimised.

A strategy I would use at this point is to go through the tasks with the young woman at home and include members of the family in the sessions both observing and participating to build joint working. Another strategy that could be used is to initially agree set tasks that the daughter does as part of the family daily routine. This could be pouring the drinks at meal times which would be performed in front of other family members so they could monitor her progress.

As family confidence increased the task complexities could increase. I would be keen to highlight their daughter’s level of motivation to participate in home life.  It is important that the family understands their daughter’s right to independence and the benefits to her throughout her life, if she was allowed to be more independent."

Alexis Horam, Senior Rehabilitation Officer, Harrow Social Services, Greater London

"I think this scenario is a fine example of where joined-up and collaborative working can be of most use. At 18 this young woman may be supported by the Transition Team (from young person to adult service), the Learning Disability Team and Education and I would want to work with all of these teams and the family.

For many families accepting that at 18 a young person (in the eyes of Services) has become an adult can be a tricky one emotionally, especially if the young person is vulnerable. Having carried out an assessment where the family did most of the talking, I would want to visit the young woman at school where I could observe her, and talk to her and the staff who work closest with her.

Once I had established the young woman’s capabilities and her aspirations I would probably arrange a professionals’ meeting and invite the family. At this point a learning plan could be discussed where all parties could take some ownership for helping develop this young woman’s desire for independence. For the family a slow and steady progression would be imperative where an acknowledgement of their feelings, concerns and love for their daughter was always taken on board without it suffocating the progression being made. Building trust with the family and involving them in the rehabilitation process is, I believe, key to the success of this young woman continuing to blossom and evolve as an independent adult."

Chris Taylor, Rehabilitation Worker with visually impaired people and working with children and adults, Bath

"My first response to this referral is to ask who made it, why they made it and who was aware of it being made, and – importantly - has the service user given permission for it: she is an adult and it is important she is treated as such. 

I also want to know why, if this service user has a visual impairment, has mobility training not been an issue until now? l am questioning the level of visual impairment, its impact on her mobility skills and I am questioning how much this is about attitude towards her as a young person with a learning difficulty, than it is about a person who does not see well.

Why the suspicion? I am querying what my role will be here: will it be teaching mobility skills to a young person with a visual impairment who has given permission for my involvement or as an advocate for one party who wish to change the attitudes of perhaps the parents?

If it is the first I would want to learn more about this young woman’s capabilities through observation of her especially at school and to listen to her parents fears. More importantly and over a  period of time, I would want to help her develop into an independent adult.

If however it’s the second, then that is not the role of rehab but it would be a more appropriate referral to my social work colleagues within the learning difficulties services."

Simon Labbett, Rehab Worker, Bradford

"I think that Pete and Alexis’ responses show that a slow and diplomatic approach is required. What Chris points to is that there is sometimes more to a referral than what it says on the referral form. This long-duration work is hard to sell to adult service managers who may struggle to see the value of our involvement when he/she is feels the pressure for the team to complete work within the six week limit normally associated with reablement work. 

This work here is not reablement: it’s much closer to habilitation work and I believe it’s also the kind of case that rehab workers in non-sensory teams struggle to get.

Whilst the kind of situation described can happen in any setting, I have found that some families take more convincing 'to let go'. Maybe there is an expectation that family should be responsible for keeping their child safe –   this thinking does not necessarily come from the parents themselves, but from extended family. "

Readers respond to the dilemma

Carol Quearns, C&YP Mobility Instructor, Guide Dogs Glasgow

"In my experience this can be a very common problem when working with children and young people (C&YP) where members of the family often speak for the CYP and are very protective of their child’s safety. Making the family aware that they are preventing their child from living their lives to the full can be challenging but well worth the effort.

Building a good positive relationship with the whole family and providing information and advice to help the family understand the importance of their child’s independence is a good foundation to start with.

In this situation I find it is beneficial to arrange the initial training without the family being present. Build on the young person confidence and independence by giving achievable tasks which reflect their own aspirations. Feeding back and discussing the young person’s development, as well as offering an observation of a mobility lesson can keep the focus on the young person’s strengths rather than on their limitations.

This is why it’s important to offer early support for the C&YP and their families to help prevent situations such as this. I would recommend family information days showing case studies of C&YP’s achievement’s, simulation exercises, socialising with other parents in same position, other CYP’s talking about their life experiences as these can be very inspiring.

Craig Colahan, Information and Research Officer, RNIB

"I'm responding on the assumption that it is an optometrist or dispensing optician that has carried out a domiciliary eye exam on the 18 year old female and that learning difficulty is the same as learning disability. In the UK learning difficulty is more associated with conditions like dyslexia and learning disability more associated with multiple complex needs like Down Syndrome or Brain Injury.

I'd like to frame my response in the context of the remit of an optometrist, or at least my interpretation of the remit. I feel the remit of the optometrist would be clinical and safeguarding. Clinical regards the reduction in independence skills and mobility; could these be linked to a reduction in sight? A simple correction of refractive error could make a dramatic improvement. Could there be an abnormal ocular condition that is causing a change in behaviour e.g. visual field loss.

It's also important as an optometrist or dispensing optician to try to talk with the patient as much as possible.  It's a skill to be able to talk to the patient and make it clear to the family/ carer when their input is valued and when not.

As an optometrist I would sign post the family to a social services department of the local authority, either the learning disability or the sensory impairment team or both. The patient and carers would benefit from transitions advice, i.e. the move from secondary education to post 16 life, e.g. further education or work.

The secondary school would most likely know of the local provisions for transition services. Other sources of advice include RNIB Loughborough College or look at the RNIB Visual Impairment and Learning Disability Services for transition support and possible future service provision."

Your view counts

Do you agree with our panel? Email your response to nbmagazine@rnib.org.uk or answer the next dilemma by 30 July 2014.

The next dilemma...

You are referred to a 58 year old man who rarely goes out on his own, and has asked for a "white stick". A visit is arranged where he demonstrates he can read a car number plate in excess of 20 metres. However, if he puts his hand out to touch an object, it isn't where it should be and in some circumstances, it isn’t even the object he thinks it is. During your visit, you are shown a folder full of letters from consultants indicating the client is fit and well. The tone of the letters suggests the sight loss is psychological in nature. All consultants discharge quickly. How would you respond to this referral?

 

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