Dani Williams was one of the founder members of The Intermediary Cooperative and has also been a Registered Intermediary since 2014. Prior to this, Dani worked as a Speech and Language Therapist.
She has extensive experience supporting vulnerable people in Criminal and Family courts including many with progressive neurological conditions, including Huntington’s Disease.
Huntington’s Disease affects between 3-7 of every 100,000 people and is an inherited condition that affects cells in a person’s brain, causing physical and emotional changes that get worse over time.
The condition typically starts when someone is in their 30s to 50s, although there is a rarer form known as Juvenile Huntington’s Disease that can affect younger people.
Dani says: “The condition can be extremely subtle at first and sometimes family or friends will detect that something is wrong before the person with Huntington’s does. It may be that someone has become clumsier or has issues with cognitive processing. People with Huntington’s Disease gradually lose the ability to do certain everyday tasks that previously had been straightforward.
“How quickly the condition worsens depends on the individual. Sometimes there are personality changes, which could include someone becoming more aggressive or struggling to regulate their emotions. There is not one description that fits all.”
Dani herself has so far supported three vulnerable people with Huntington’s Disease in the justice system.
In one case, a female defendant with severe Huntington’s needed a range of support.
The starting point was a ground rules hearing to determine in some detail what would work best for her during her trial. This included her remaining at the secure unit for most of the trial, accessing each day remotely, apart from when she had to give evidence when she attended court. This itself required various modifications including ensuring the seating was appropriate as her condition meant she would kick out with the risk of falling over.
Other considerations included ensuring the defendant could only see the barrister asking questions, the judge and the jury during her evidence rather than the full court to help remain focused and to regulate her emotions. She also required regular scheduled breaks in the proceedings.
Dani says: “I was with her every day of her trial in court and at the secure unit along with a member of her legal team. Being in a remote setting away from the court room meant that the link to the court was muted allowing me to explain what was happening in real time and write notes containing simple bullet points to assist with her understanding.
“Getting her to focus on what was happening in court was difficult because her condition meant that she would often fixate on something that had happened earlier in evidence rather than listening to what was being said in real-time.”
In a separate case, Dani assisted a complainant with Huntington’s Disease who alleged that he had been assaulted in his care home. A key aspect of the case involved supporting him in trying to identify the person who had carried out the assault. This included using tailor-made communication charts to help him say whether the attack had occurred during the day or at night, how he had been assaulted and looking at photos of the various members of staff at the home.
Away from the criminal courts, Dani has also facilitated communication in a Family Court setting with a mother who had Huntington’s, who could no longer care for her children.
Dani says there are some simple steps that those in the justice system working with vulnerable people with Huntington’s Disease can consider, including:
- Be mindful that sometimes someone can give the impression that they understand more than they do. This is often due to a lack of awareness of the things they can and can’t do or the information they can process. Simple actions like nodding or smiling may mask their true understanding.
- Keep things simple. Take one task or topic at a time.
- Be aware that a person’s speech could be extremely slow and that they need time to communicate everything that they wish to. Avoid interrupting too soon as they may still be processing everything they want to say.
For more information about Huntington’s Disease, visit the Huntington Disease Association website – https://www.hda.org.uk/