Designing inclusive built environments for non-verbal communicators with severe intellectual disabilities

Ilianna Ginnis

Ilianna is an access consultant at Architecture & Access and a current PhD candidate within the Design Health Collab at Monash University. Ilianna has a personal connection to the field of accessibility as her younger sister, Michelle, is a non-verbal communicator with an intellectual disability, which has fuelled Ilianna's dedication to making the built environment more inclusive. Her PhD research speculates on how design processes begin to consider persons with severe and profound intellectual disabilities and non-verbal communication, allowing designers to integrate users into complex processes as narrators of their own experiences.

Imagine what it would be like if people could not understand your form of communication. For the 1.2 million Australians who are non-verbal and minimally verbal communicators[1], this is their daily reality. Individuals who are non-verbal communicators and have intellectual and developmental disabilities are commonly neglected both in design processes and research2, therefore, their voices are not heard and the limited education and exposure to their needs often leave them misunderstood.

I am dedicated to addressing this issue through my research, which seeks to empower individuals with severe intellectual and developmental disabilities, particularly those who are non-verbal communicators, by allowing them to narrate their own life experiences. My doctoral study is designed to develop a set of guidelines that not only facilitate co-design methods for designers and built environment practitioners to effectively engage with non-verbal communicators but also offer recommendations for enhancing spatial features.

My journey into my research begins with my younger sister Michelle. Michelle is 18 years old and has an intellectual disability. As a result of her intellectual disability, Michelle is a non-verbal communicator and uses pre-symbolic communication, meaning she requires interpretation by someone who knows her well. Over the years, I've witnessed the challenges she faces in both private and public spaces due to the inability of others to understand her unique communication methods. This experience has driven me to seek ways to bridge these communication barriers through design.

Intellectual disabilities encompass a spectrum of conditions that affect the brain and its development.3 My research focuses on individuals with severe to profound intellectual disabilities, many of whom do not communicate verbally and require constant supervision and support with care for daily living.

According to the World Health Organisation (WHO), over 1.3 billion people worldwide live with a type of disability4. Of these, over 200 million people globally have a severe intellectual disability5. Additionally, it is estimated that a significant portion of individuals with autism, typically around 25% to 30%, may remain non-verbal or minimally verbal throughout their lives6

Non-verbal communication takes various forms, this includes:

• Symbolic communication – This is the use of visualisations and signing systems to communicate needs. Through the use of images, pictures and signs as well as some keywords, a person is able to communicate wants and desires.

• Non-symbolic communication – This style includes behaviours, vocalisations and interaction with the environment and communication partners. This may include facial expression, pausing, gestures, moving with other persons and aggressive or self-harming behaviours.

• Pre-symbolic communication – This style of communication is unconventional and unique to an individual. These are a series of behaviours in which an individual will act to initiate conversation. At this level, communication requires interpretation to assist an individual in communicating their needs.

PhD Study intensive interaction:

The following article, therefore, details my preliminary findings from an intensive interaction study. These sessions took place in the personal residences of nonverbal communicators and allowed for in-depth observations within their familiar environments. The support network for these sessions included individuals who were closest to the non-verbal communicators and had a deep understanding of their needs. The participants were a diverse group of 10 non-verbal communicators, varying in age and cultural backgrounds, each employing different communication methods.

The intensive interaction method seeks to engage with non-verbal communicators to gain insights into their unique lived experiences and their connections with their environments7. Intensive interaction involves active engagement with non-verbal communicators, including eye contact, facial expressions, gestures, vocalizations, and behaviours. It allows for a deeper understanding of their lived experiences and interactions within their environments8. This approach aims to uncover valuable insights that can inform design considerations and strategies for effectively involving non-verbal communicators in the design process.

Preliminary findings revolved around four major themes: physical spatial qualities, emotional spatial qualities, sensory spatial qualities, and communication qualities related to the individual and their environment.

Physical elements of space refer to tangible attributes within the environment such as furniture layout and arrangement. Under physical spatial qualities, subthemes included privacy, flexibility, organization, navigation, layout, zoning, legibility, and transition. These elements highlighted the importance of creating spaces that accommodate the needs of non-verbal communicators.

Emotional elements of space encompass intangible qualities that influence emotions, psychological well-being, and support for the non-verbal communicator within their environment. Some themes around emotional considerations of space include comfort, security, feedback, predictability, familiarity, rest, and choice.

Sensory spatial qualities encompass various sensory experiences and include subthemes like kinesthesia, visual stimuli and perception, and tactility. These aspects are essential for regulating sensory experiences within the environment.

To create inclusive physical spaces, access consultants can consider the following spatial elements:

Physical

• Designated quiet spaces with a variety of seating.

• Safety and supervision considerations such as curtains, curved walls

• Enhanced environmental control - dimmable lighting and rearranging furniture.

• Open and navigable spaces - creating open areas for pacing and safe wondering and utilise open floor plans to provide clear viewpoints and pathways.

• Sensory zoning and spatial legibility - hallways and transit spaces and low sensory stimulation areas

• Streamlined layout - limited number of doors for easy interpretation of space and consistency throughout the placement of exits.

• And reduce visual distraction through organisation.

Emotional

• Creating comfortable resting spaces - soft furniture and areas to lay down.

• Diverse wall finishes for sensory feedback and regulation.

• Maximising the use of natural lighting

• Versatile seating and resting areas

• Efficient wayfinding and signage

• Safety-conscious playgrounds and outdoor design - ensuring non-restrictive safety boundaries between lakes and main roads.

• Open concept for easy supervision - allowing support workers to navigate individuals.

• And engaging in interactive elements such as lighting and sound

Sensory

• Flexible spatial layout with areas for pacing and movement

• Diverse respite areas for 1:1 retreat

• Seamless indoor and outdoor access

• Proximity to outdoor areas- having waiting areas adjacent to gardens for regulation choices.

• Throughout flooring design - using finishes with limited glare, consistent colour scheme and limited patterns as well as consistent floor pressure.

• Incorporation of biophilic design for tactile and sensory seeking.

• Material variety and balance

• Deep-pressure options such as bean bags and weighted blankets

The data collected from intensive interaction sessions plays a pivotal role in shaping design guidelines that prioritise spatial elements, including those relevant to nonverbal communicators and individuals with cognitive diversities. These guidelines are designed to establish a process wherein practitioners in the built environment sector actively integrate the autonomy and agency of non-verbal communicators into their design approach.

At Architecture & Access, we are actively working on crafting guidelines that embrace neurodiversity in the context of accessing the built environment. Our dedicated team, composed of experts with practical experience and personal insights, is committed to creating holistic guides that take into account the full spectrum of needs and abilities. Our goal is to foster a shift in design thinking that genuinely accommodates the diverse requirements of individuals.

1 “Speech Isn’t the Only Way to Have a Conversation | #AskForChange | Scope,” Scope Australia (blog), February 19, 2020, https://www.scopeaust.org.au/blog/communication-access/speechisnt-the-only-way-to-have-a-conversation/

2 Katie Gaudion et al., “A Designer’s Approach: How Can Autistic Adults with Learning Disabilities Be Involved in the Design Process?,” CoDesign: CoDesign with People Living with Cognitive and Sensory Impairments 11, no. 1 (2015): 49–69, https://doi.org/10.1080/15710882. 2014.997829.

3 Johnny L. Matson and Mary Shoemaker, “Intellectual Disability and Its Relationship to Autism Spectrum Disorders,” Research in Developmental Disabilities 30, no. 6 (November 1, 2009): 1107–14, https://doi.org/10.1016/j.ridd.2009.06.003.

4 “Global Report on Health Equity for Persons with Disabilities,” accessed October 3, 2023, https://www.who.int/teams/ noncommunicable-diseases/sensory-functions-disability-andrehabilitation/global-report-on-health-equity-for-persons-withdisabilities.

5 “What Is Intellectual Disability?,” accessed October 3, 2023, https:// www.specialolympics.org/about/intellectual-disabilities/what-isintellectual-disability.

6 Amanda Brignell et al., “Communication Interventions for Autism Spectrum Disorder in Minimally Verbal Children,” Cochrane Database of Systematic Reviews, no. 11 (2018), https://doi.org/10.1002/14651858. CD012324.pub2.

7 Mark Barber, “Using Intensive Interaction to Add to the Palette of Interactive Possibilities in Teacher–Pupil Communication,” European Journal of Special Needs Education 23, no. 4 (November 2008): 393–402, https://doi.org/10.1080/08856250802387380.

8 Phoebe Caldwell, “Intensive Interaction: Using Body Language to Communicate,” Journal on Developmental Disabilities 19, no. 1 (2013): 33–39.