The theme of this edition of Frontline is Human Rights. With this in mind, this article hopes to give you an insight into the Human Rights-related challenges an Assistant Psychologist working in an autism service might encounter on a daily basis. I will give a brief entry-level synopsis of where we are at with Human Rights legislation for people with disabilities in Ireland today, give a case example that highlights Human Rights issues I face in my work, and show what initiatives my clinical team and I are implementing in order to put the Human Rights of the people we support to the fore. The tone will be practical, but the sentiment sincere.
Where is Ireland at in terms of recognising the Human Rights of people with disabilities?
In 2006, the United Nations enacted the Convention for the Rights of Persons with Disabilities (CRPD). The CRPD provides a framework which countries can adopt in order to protect and legislate for the Human Rights of people with disabilities. Despite signing the convention almost immediately, Ireland became the last European Union country to ratify it (make it official or valid). This was apparently due to delays in signing the Assisted Decision Making (Capacity) Act 2015 into law. The purpose of this law is to ensure that all people are given equal opportunities to make decisions, and when someone might struggle to make a decision for themselves, appropriate accommodations are made to help them.
So what does all of this mean for me in my work? In the day to day, very little being honest! As practitioners, my team and I have always hoped to do our best for our service-users. This means helping them to live a meaningful life, with equal access to the Human Rights we all enjoy. While it is imperative that our country is bound by law to protect the rights of the people we support, I must preface this article by saying it is not the sole reason we do what we do.
As a well-intentioned person and practitioner, surely serving the Human Rights of service-users is easy, right? Wrong.
Despite my best intentions for the people I support, I sometimes find myself grappling with trying to afford them the fullest of Human Rights, whilst trying to protect them from the responsibilities that go hand-in-hand with these rights. Allow me to take you through a general case example which highlights the Human Rights rollercoaster we find ourselves on, on a daily basis, whilst trying to do our utmost for the people we support.
Jody is a 33-year-old service-user. He loves sweets and treats. He does not have words but he is very strong at communicating his needs and wants. He has great agency in his environment and will pick up items he wants, engage in preferred activities, and transition appropriately out of activities when he no longer wants to participate. Jody is very social and enjoys being out and about in the community. Jody operates at a younger developmental age than his chronological age. Think approximately two years old.
It is very clear that Jody enjoys trips to the shop. However, Jody is not at a developmental age to understand that you cannot take and eat everything in the shop. Consequently, a trip to the shop might look something like this: Jody rushes to grab crisps, chocolates, sweets, opens them and eats them in the shop, whilst looking for more treats to eat. Staff try to explain to Jody that this is not appropriate, but Jody is having too much fun and does not want to be interrupted!
As Jody does not understand the concept of money, Jody does not understand that this is essentially stealing. Staff do their best to pay for Jody’s haul, whilst also trying to encourage Jody to leave the premises. Shopkeepers look on, sometimes embarrassed, sometimes helpful, sometimes annoyed. Jody might be barred from returning to that shop again. In addition, Jody is heavily overweight. Staff try to help him make healthy food choices, but when given true choice, he will rarely opt for the superfood salad.
A rollercoaster indeed! Now, let us pick apart the Human Rights implications involved in a story such as this.
Jody is an adult and we want Jody to have opportunities to have fun and to learn. Jody is allowed to make mistakes. Jody does not have huge communicative ability, but it is very clear that Jody enjoys ventures to the shop, and the resultant goodies. It is only natural that staff as caring people, want to give Jody the opportunity to make decisions about how to spend the day, and to have happy experiences.
However, experiences such as these serve as a risk to Jody’s reputation in the community. Furthermore, if we are to assume capacity under the Capacity Act 2015, Jody may be considered as wilfully not paying for items and being disruptive. Consequently, it is reasonable for staff to opt out of bringing Jody to shops. However, then we find ourselves denying Jody the option to make decisions and follow them through. If asked, Jody would purposefully choose a trip to the shop. Even in the absence of being asked, Jody may abandon activities such as a walk or swimming, in order to run to the nearest shop, a very clear indicator of choice.
As an Assistant Psychologist in this instance, I can put regimes in place in an effort to teach Jody to visit the shop appropriately. I can introduce visual social stories about shops, and encourage staff to engage Jody in educational role play games around shopping. However, all the while Jody is being denied that trip to the shop – and future trips to the shop will be determinant on Jody’s progress with the shopping skills programme – skills which may be beyond Jody’s developmental age.
This does not sit well with me from a Human Rights perspective but it’s a corner we are sometimes backed into in light of our duty of care. Neither facilitating trips to the shop nor not facilitating trips to the shop feels ‘fully right’, so we must sit in uncertainty hoping we have made the ‘most right’ decision. If any readers would like to offer suggestions or similar stories, I would be glad to hear them.
My fellow clinical team members and I are presently rolling out some initiatives across our organisation in an effort to ensure that equal Human Rights is a primary focus of the services we provide. These are, namely:
- A Rights Review Committee
This is a group of key stakeholders from the service who meet on a monthly basis to review Rights related issues which have arisen in the service. The committee advocates for the Human Rights of the people we support, and makes key decisions in light of this.
- A Clinical Team Drop-In service
Rather than operate from a purely written referral-based system, service-users are encouraged to call to the Clinical Team’s weekly drop-in session if they have any issues. Service-users can come with or without staff. It is hoped that this model makes Clinical Services more accessible to the people we support. Fair and equal access to services are a key component of the CRPD.
- Safeguarding Training
This training is grounded in Human Rights and aims to put Human Rights of service-users at the forefront for staff.
- Assisted Decision Making and Capacity Act 2015 Training
This training is still in development but will help staff to define ‘capacity’, never to assume a lack of capacity, and how to access Decision Support Services.
Services and greater Ireland have a long way to go to ensure the Human Rights of people with autism and/or intellectual disabilities. That said, I don’t think there will ever be a day we can say we have achieved this. There will always be more that should be done. This article set out to give you a snapshot of some of the contention I face around Human Rights in my daily work. Sometimes I have to settle with the ‘most right’ of Human Rights, and feel that I am neither fully right nor fully wrong. However, whatever uncertainty I face in this situation must pale by comparison to the uncertainty faced by people with intellectual disabilities and/or autism on a daily basis regarding fair access to Human Rights.