Does adult services need something like this document from Childcare services that makes explicit the needs and requirements of staff? https://www.kidsmatter.edu.au/sites/default/files/public/KM%20Linking%20resources%20C2%20Book_web_final.pdf

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?

Many years ago I wrote an article called “Age appropriateness: Enabler or barrier in the lives of people with profound intellectual and multiple disabilities”. In this article I suggested that the concept of everything having to be age appropriate was operating as a barrier in the lives of people with profound ID often: blocking people from accessing preferred activities, limiting the reasonable accommodations used, and being applied with little evidence.

Now I’m turning my head the the frequent heard comment “support workers are not your friends” and questioning whether this comment is operating as a barrier or enabler in the lives of people with profound ID.

Over the last weeks I’ve been involved in conversations about this, and observed others on Facebook. Many strongly say “support workers are not friends, they are paid”.

But I struggle with a number of things when this is applied to people with profound intellectual disabilities who have support workers in their homes or day services.

I struggle with the question of what is meant by the word friendship? If it refers to a mutually enjoyable interaction with someone, then how can we say that a friendship is not there sometimes in the paid relationship.

If we say, well if the staff member wasn’t paid they wouldn’t be there. Well, yes, many wouldn’t. But some might occasionally depending on whether the organisation “allows” it or not.

Do we say that the pay provides an permanent break in the assumptions of friendship? But what about the assumption of reciprocity; do we also say  that people who can not reciprocate, call up, send a card to their “friend” are disqualified from ever achieving friendship because they they don’t have the independent capacity to do the usual rules of friendship. (Are we holding a standard for people with disabilities much higher than we would people without disabilities?)

I think of one person that I would call my friend who has a profound intellectual disability. I used to work with him, and it was there that we (speaking on his behalf tentatively) developed mutual enjoyment in his company. I sought a continued friendship after finishing working with him. I see him when I contact him – he can not initiate the contact with me. We don’t see each other a lot. But I feel we still share enjoyment in each other’s company.

Many people say that people with disabilities should have people who are unpaid and don’t have disabilities. But if I walked up to a group home and said I’m not paid, and I want to take so and so out because they’re my friend, many would treat this with mistrust. I ask the parents of people with profound ID out there: how would you feel about a “community member” wanting to have a friendship with your son or daughter? Would an organisation allow it , support it?

Many of the people that I support also have characteristics that may not win them friendships in the community. Many drool, make strange sounds, some hit themselves, strip their clothes, bite other people, and require significant care routines.

When I think about these people and the concept of friendship I wonder what hope they have if their staff are not allowed to be seen as friends.

I concede, yes it’s a paid relationship, yes they may move on. Yes it may not comply with the rules of friendships, and yes, for some people (both staff and people with ID) the boundary might need reviewing.

But my greatest worry is the nature of interactions when staff are told they are not allowed to be friends. Many people worry about staff not knowing the boundaries if they are considered friends. I worry about staff not knowing the boundaries between indifference to a person and a warm caring, mutually enjoyable relationship. I mean how exactly do you “do” not being a friend.

I worry about the social-emotional implications for the person with a disability. People develop and use their existing social-communicative skills in interactions with others. Will sitting down with the person be seen as too friend-like, and therefore be discouraged?

People with profound intellectual and multiple disabilities are frequently so isolated despite being surrounded by people. Anything that threatens to invalidate their connection with other people (in this case the support staff that are the most frequent people around) should be treated with extreme caution.

My personal opinion is that if staff choose to call the relationship a friendship then that has more potential for enhancing the person’s quality of life. Of course reflective practice and safeguards are needed. Of course, each individual needs to be considered (if a person is likely to misinterpret the relationship  or develop sexual feelings). People with profound ID can be incredibly vulnerable. But are they more vulnerable when they are surrounded by people who would choose to call themselves friend?

(I’d love to hear what you think – I know this is a very sensitive topic for many people)