Richard and Dierdre Croft – Voice

I have had the benefit recently of learning about the stories of Richard, Charlie, and Dierdre Croft though the documentaries focusing on Richard and from Dierdre’s own writing.

The documentaries teach so much about experiencing the support and love of a person with a severe ID ini Australia across 4 decades. The first, Driving with Richard, introduces the family and contains scenes of the trauma when someone is hitting, hair pulling, but also loving – I think this is a must watch for anybody supporting people with challenging behaviours – it can only feed an empathy.

The second, Wonderboy, shows Richard growing out of schooling and his life with his father. It unpicks the complexity of choice in the context of different people and different abilities. It has particularly got me thinking about the place of strong voice in the support of people – when do people need strong boundaries, who can deliver strong boundaries?

The third film, On Richard’s Side hasn’t been released yet. It had a screening at the Sydney film festival, and will have a number of community screenings upcoming (I’m hoping to host one in my neck of the woods). The trailer shows that it will be yet another piece of essential viewing. http://www.onrichardsside.com.au

I also came accross Dierdre’s submission to the Review of the National Disability Advocacy Program – https://engage.dss.gov.au/ndap_consultation-submissions/deirdre-croft/. Here is a snippet of her submission, which I think may be relevant to readers of my blog: 

AN ADVOCACY QUESTION

Who is qualified to speak for those who cannot speak for themselves?

In making this submission, I begin with a question in my own mind, which I hope your own committee may also pose, as well as answer, in the current review of the National Disability Advocacy Program.  

My question is:

Who is best qualified to represent and advocate for my son’s lifelong needs for support with personal care, skills development, physical activity, recreational opportunities, social engagement and other quality of life dimensions?

As an extension of that question, I also ask:

Who is best qualified to represent and advocate for the systemic issues and obstacles facing people, like my son, who have a severe intellectual disability and complex needs and who are, in many cases, unable to speak or advocate for themselves?

  

DOES LIVED EXPERIENCE OF DISABILITY QUALIFY A PERSON

TO ADVOCATE FOR MY SON?

As well as a severe intellectual disability, Richard is sight impaired.

Would a person who has lived experience of being blind or vision impaired be sufficient to inform any advocacy they may undertake that is relevant to the lifelong needs of my son and of others like him? I think not.

Although Richard can walk, he also has mobility challenges and needs support to navigate the physical environment.  

I wonder whether a person who is also restricted in their mobility, but otherwise intellectually competent, could understand and advocate for the needs of someone like my son, and other people with intellectual disability who similarly experience mobility restrictions. Again I think not.

Richard has no verbal communication. Perhaps a person with hearing impairment might understand what it may be like for someone like Richard who also faces communication challenges? No again.

 

DIFFERING DIS/ABILITIES DIFFERING NEEDS

From the range of disabilities listed above and, as an intellectually competent person, I can quite easily imagine what it might be like to be blind, or to be deaf or to have mobility restrictions. I could even use a few props to enhance my understanding.

I cannot, on the other hand, imagine what it is like to live with a severe intellectual disability as Richard has, nor do I understand how my son perceives his world.  

It is only because I have a close and long term personal relationship with my son that I am able to pick up on the subtle changes in his state of equilibrium and sometimes, not so subtle, changes in his behaviour which enable me to discern how he is travelling and/or what may be disturbing or disrupting his quality of life.

For people with physical or sensory disability, I believe I also understand some of the access and inclusion issues they might face in their quest to participate and be included in all dimensions of Australian society.  

I would, however, suggest that the physical and social barriers faced by people with physical or sensory disability can, in large part, be readily rectified with some accommodations in the physical environment and/or by championing changes in discriminatory public attitudes.

In a hierarchy of human needs, the “access and inclusion” and “choice and control” issues advocated by, often highly intelligent, articulate people with physical and sensory disability are nowhere near the priority issues impacting on my own son’s wellbeing and quality of life.

My son’s disability is pervasive. It impacts on every dimension of his life.  

He depends on every person who comes into his life to do the right thing by him.  

Richard relies on other caring people to:

• meet his most basic physical needs

• provide opportunities and support for him to engage with his physical and social environment

• provide opportunities and support for him to develop and practice skills that will enable him to maintain and increase his competence and personal independence

• speak up for him and advocate on his behalf.

The extent and breadth of my son’s multiple disabilities not only makes him incredibly dependent on the good intentions and actions of others, but also incredibly vulnerable if these good intentions and actions are not forthcoming (even in one single person who may be involved in his day-to-day life).

How could a person with a singular physical or sensory disability possibly understand what life is like for Richard, and for others like him. How does their lived experience of disability help to inform any advocacy they might undertake for the hundreds of thousands of people like Richard in our society?

And yet people with physical and sensory disability with a lived experience of their own particular disability are predominantly those who populate the current, generic disability advisory and advocacy groups.

Regrettably, there also appear to be many people with physical and sensory disability amongst this same population who deny the legitimacy of the advocacy contribution of family carers who seek to represent and advocate, not only for the needs of their own family member with severe intellectual disability, but for the needs of others like them, who, like Richard, cannot speak for themselves.

Thinking about social and emotional skills of adults with severe or profound intellectual disabilities

A few months ago I was struck by a guide that I read about how educators support the social and emotional skills of children in early childhood settings –  click here to go to the guide

The guide laid out 14 things things that educators could do to support the social and emotional skills. It made me think about how this might relate to services for adults with severe and profound intellectual disabilities.

I put together this little video to explore this idea – it’s not slick, but hopefully its a helpful discussion point along with this handout here

To “I” Or Not To “I”

Recently I did a short piece thinking about writing in first person for people with profound intellectual disabilities – that is, writing things about people using the word “I” as if the person wrote it themselves. It’s been great to hear the conversation that this has started. I’ll pop up a pdf link later (but if linked it as an image at the end of this post – Thanks to PMLDlink for allowing me to do this, and Polly Samuels aka Donna Williams for her painting “Illussions of Control”).

In one discussion Nell Brown presented two different profiles of her daughter Tess as examples of two different practices. She agreed for me to share them here.

What’s your first impressions from the way these are written? Who do you think would be an appropriate “author” for each? What do you think are the pros and cons of each style? What might be the implications for supporting Tess?

“First person”

My name is Tess. I like to be given the opportunity to make choices for myself, but I also like out-of-nowhere experiences, and will become enthusiastic if handled with excitement and humour. I love music and dance (unless I am having problems with voices). People who work with me can offer to put music on, sometimes just having music on can draw me out. If I am in the mood I can dance around the living room for ages. I love praise and respond well to people who make me feel special and take time out to chat to me. I love enthusiasm. I love swimming, drama, friends and family. I love social occasions. I have a lot of hours to fill so this can be flexible f you are studying or working part time elsewhere. Come and meet me and we can see if we suit each other!

I am 30, can be very cute and have an intellectual disability and schizophrenia. I am not safe on my own. I tend to internalise and that is not a good thing. I am looking for someone to work with me who loves doing interesting things. I need help with my speech so studying speech therapy, physio therapy OT etc is an advantage. I am looking for someone who can work alongside my speech therapist in order to support me.

I would like someone willing to help me with my garden, cook with me and help me develop a range of skills. I love going out for massage but need a support person. Sometimes I am stair phobic depending on my medications working properly. I am on a ‘get fit’ regime, so you must be willing to be physically active – nice long walks (I am not very fast). Working with me on my ipad, taking photos of my day and making storybooks will be fun! I love wacky humour, I love adventure, love musicals and if you like these things, I am looking someone just like you! You need to be strong and resist the urge to buy me sugary or fatty things because I love healthy alternatives too and need your guidance!

Third Person
About Tess…. My daughters name is Tess. She likes to be given the opportunity to make choices for herself, but also likes out-of-nowhere experiences, and will become enthusiastic if handled with excitement and humour. Tess loves music and dance (unless she is having problems with voices). People who work with Tess can offer to put music on, sometimes just having music on can draw her out. If she is in the mood she can dance around the living room for ages. Tess loves praise and responds well to people who make me feel special and take time out to chat to her. Tess loves enthusiasm. Tess loves swimming, drama, friends and family. She loves social occasions. Tess has a lot of hours to fill so this can be flexible if you are studying or working part time elsewhere. Come and meet Tess and her family and we can see if we suit each other!

Tess is 30, can be very cute and she has both an intellectual disability and schizophrenia. She is not safe on her own. Tess tends to internalise and that is not a good thing. We are looking for someone to work with Tess who loves doing interesting things. Tess needs help with her speech so studying speech therapy, physio therapy OT etc is an advantage. We are looking for someone who can work alongside Tess’s speech therapist in order to support her.

We would like someone willing to help her in her garden, cook with her and help her to develop a range of skills. Tess loves going out for massage but needs a support person. Sometimes Tess can be stair phobic depending on her medications working properly. We have Tess on a ‘get fit’ regime, so you must be willing to be physically active – nice long walks (Tess is not very fast). We are looking for someone willing to work with Tess on her ipad, taking photos of her day and making storybooks. Tess loves wacky humour, loves adventure, loves musicals and if you like these things, we are looking someone just like you! You need to be strong and resist the urge to buy Tess sugary or fatty things because she can be coerced into quality food, as she loves healthy alternatives too but need your guidance as her personal judgement on food is not always in her own best interest.


People with profound intellectual and multiple videos – in online training

Last year I was honored to be asked to be part of Nick Lennox and team’s fantastic online learning course focusing on the health of people with intellectual disability.

https://www.edx.org/course/well-able-improving-physical-health-uqx-able201x

Here is my little piece of it. I hope it does positive justice to people with profound intellectual and multiple disabilities, enhancing understanding, respect and consideration of them and those people who support them.

Understanding Suraj – An invaluable resource for anyone supporting someone with profound intellectual and multiple disabilities (and others)

That person that I’m working with, I’ve got as much to learn from them as they have from anybody else around them. And I want to be open to that. And I don’t want their life to be a wasted life; that’s the other thing isn’t it. Somebody whose maybe going to live for 40 years and then die, and nobody managed to unlock that potential and nobody managed to get in there because that is just a wasted life. I don’t want that to happen, don’t have to have wasted lives do they. They’re human beings with just as much potential as anybody else, and that’s unlocking, let’s find out what’s in there. Let’s not let it be wasted; let’s learn from that person.  – Rebecca Leighton in Understand Suraj DVD.

I was so excited to receive my copy of Understanding Suraj: Uncovering the person behind multiple disabilities from NL Productions UK, and I wasn’t let down.

This is a 45 minute DVD presented in four parts, including a background of Suraj narrated by his father, an observation of Suraj, and unpacking the current approach to being with Suraj. The story is honest, showing the disturbing self-injurious behaviour that Suraj had used for years, and using the voices of support workers and therapists to talk how they now approached Suraj.

Some viewers may struggle with the various strong English accents of narrators in Understanding Suraj. While the DVD appears  to begin with subtitles, these don’t appear to continue (as far as I could see). While I’ve spent time with Graham Firth, one of the narrators, I did need to spend some time re-getting my ears around his northern accent. Similarly, just getting the quote above took me several minutes of re-listening to capture some of the phrases.

While the narrators discuss Intensive Interaction (Nind & Hewett http://www.intensiveinteraction.co.uk) as a framework underlying the communication approach with Suraj, it is not essential that you have background knowledge of the approach to follow the story. Following viewing the film, viewers may want to learn more about Intensive Interaction.

I recommend this DVD to anyone supporting people with profound intellectual and multiple disabilities, and particularly for those who may use self-injurious behaviours. I think this would be a great DVD for teams to watch and discuss. Some of the practices they see on the DVD may be the same as what they are already do, and some may be markedly different. It would be useful for teams to discuss whether they would consider using the methods with people they support, and unpack why they may or may not do things and the subsequent potential implications of these choices for them and the people they serve.

Speech pathologists and occupational therapists may also find Understanding Suraj an invaluable resource. It may challenge current practice or support ways of working. The DVD shows that dynamic interactions must be the centre communication supports (communication supports must go beyond personal communication dictionairies, chat books and object of reference).

I also think that this would be an excellent resource for staff at the NDIA – it gives such a rich picture of one individual, the experience of families and support workers, and the possibility of an improved life through working towards the best possible relationships between staff and the person they serve. These relationships need to be thought about, planned, informed and supported. Sometimes they occur naturally with amazing support workers. But too often, in line with Rebecca Leighton’s words (specialist speech and language therapist), the time is not given to unlock and spend the time to get to know the person in their full potential.

The DVD can be ordered through DL Productions UK – http://www.nlproductionsuk.co.uk/styled/DVD%20Understanding%20Suraj/. It is also available through Amazon UK, but this does not appear to be able to be shipped to Australia at the moment. A short intro the the video is also available on YouTube – http://youtu.be/inWvCsumQLk


Is having someone to talk to the biggest problem?

Lately I’ve been think about what I’m starting to think is the biggest communication problem in day and residential services for people with severe and profound levels of intellectual disability: the lack of having someone to talk/interact/share attention to/with.

I visit many places doing Brief Interaction Assessments. Through spending time with the person, I am able to come up with small achievable goals (that I’ve tried out with the person). I come up with other ideas for how to enhance interaction with the person and work towards greater shared understand. Sometimes I might suggest technology or different sorts of communication systems. But mainly it is all about ways to interact with the person, and how to help the person be calm and alert for optimum interaction.

But I feel like the foremost problem is cultures that have devalued the importance of sitting down with a person for a few minutes, without doing anything to the person (not giving the person medicine, or assisting with their meal, or stopping behaviours perceived to be inappropriate), just watching, attending, responding, and sharing with the person regularly.

When I visit services in the afternoon, I am often told that the person “is resting after their day at their day service”. Sometimes I’m told “they just like their own space” (and sadly I see this written in reports – a comment that I believe only perpetuates the lack of interaction and fails to explore under what conditions the person does tolerate or enjoy time with others). Sometimes I’m told “we interact after dinner, after so and so has gone to bed”. And sometimes I’m told “we just don’t have the time”. I would love to trust and respect those comments, but when I hear them over and over, and I rarely see a staff member just sitting down engaging with someone, then I feel despondent.

One of the ways that I’ve tried to change this culture is by introducing the HOP (Hanging Out Program) – a commitment to giving a person 10 minutes of interaction. But this is not enough.

I feel that a different approach is needed: something that says “if you haven’t sat down and interacted with at least one of your residents/service users, then you haven’t done your job”. Something that says the three hours of self-engaged sucking on your clothes in the same position is NOT having a rest after day-service, it is being shut out of the world.

Does sitting down with a person need to be on the task list of the day? Does it need to be included in service audits? Do policies need to explicitly say “the interaction between the support worker and person with a disability is at the core of the person’s quality of life”? Do we need to challenge the idea that sitting down with a person is slacking off, is just mucking around?

Do we need to say that the core of communication is spending time with another person, which can be a support worker, and, without that time, the success of any other interventions will be severely limited? You could have the amazing eye-gaze communication device or iPad with great communication apps, you could have a “sensory program”which picks up your smallest movements and transfers them to beautiful sounds, or the simple ability to reject or accept something, BUT without someone sitting down with you there is no communication.

How do we make this change – is this change needed – what do you think?