Access to Communication Assessment and Intervention for Adults With Intellectual Disabilities

ABSTRACT

Background

Effective communication is essential for health, quality of life and social participation. Adults with communication disabilities—particularly those with intellectual disabilities—often face systemic barriers to accessing appropriate support.

Method

A retrospective audit of 497 consultations from 276 adults with intellectual disabilities living in Australian group homes (2017–2022) was conducted at a private speech pathology clinic. The audit examined the proportion of patients recommended for and receiving a full communication assessment.

Results

A mixed method analysis was conducted and identified that of the 234 patients recommended for assessment, only 93 (39.7%) received one. Thematic analysis found that facilitators included dedicated funding, carer advocacy and multiple clinical contacts. Barriers were primarily related to funding limitations, competing clinical priorities and poor service access.

Conclusion

There is a clear gap between recommended and delivered communication assessment. Systemic reform is needed to prioritise communication through improved funding pathways, carer training and access to speech pathology services.

Lay Summary

• Many adults with intellectual disability living in group homes are missing out on important communication support. Even when a speech pathologist has recommended a communication assessment, only about 4 in 10 actually receive the assessment that they need.

• Funding, lack of advocacy and communication being seen as a low priority are three reasons that people don't get the communication assessment that they need. This happens, even though communication problems can seriously affect health, behaviour and quality of life.

1. Introduction

Access to an effective communication system is critical for the health, quality of life, vocational opportunities and social participation of people with communication disability, including interactions within their family or extended community (Morris et al. 2016). Prior literature has shown that having a communication disability is associated with greater dissatisfaction with medical care (Hoffman et al. 2005) and lower self‐esteem (Jackson et al. 2014). The reasons for this are likely to be multifactorial, including the use of complex language that may be inaccessible to individuals with intellectual disability (Bradshaw 2001), as well as the reliance of many people with disabilities on non‐verbal means of communication (Smith et al. 2020).

Opportunities for innovative communication management approaches to support adults with disability are continually evolving. While low‐technology communication supports remain valuable and frequently used tools, researchers are increasingly exploring alternative technologies to deliver communication interventions and enhance learning experiences (Bailey et al. 2022). At the same time, environmental factors play a critical role in shaping the effectiveness of interactions, particularly within healthcare settings (O'Halloran et al. 2008). Augmentative and Alternative Communication (AAC) strategies further demonstrate the potential to increase participation and engagement in communication (Babb et al. 2021).

Despite the known challenges and known opportunities to enhance the communication skills of adults with disabilities, communication skill development is often deprioritised in the community and hospital setting in favour of a swallowing assessment (García et al. 2020). While communication impairments vary widely in both type and severity, there appear to be few avenues to develop existing skills or upskill the caregivers as communication partners. In the Australian context, access to services is partly shaped by the National Disability Insurance Scheme (NDIS), a government‐funded program that provides funding for supports and therapies to people with permanent and significant disability, alongside mainstream healthcare services delivered through the public health system.

The primary aim of this study was to quantify the proportion of individuals with intellectual disability referred to the service who were recommended a communication assessment and subsequent management plan. The secondary aim was to identify barriers to accessing a comprehensive assessment in this setting. Specifically, the study examined the proportion of adults living in Australian group homes who, following recommendation, had access to a communication assessment and an associated management plan.

2. Methods

2.1. Study Design

This was a retrospective medical record audit of the communication management of patients with intellectual disability referred to a private speech pathology practice database between January 2017 and January 2022. This five‐year period was selected to provide a sufficiently large and diverse sample to examine access to communication assessment and management, while also capturing potential shifts in practice across time. Importantly, the study period overlapped with the onset of the COVID‐19 pandemic (March 2020 onwards), a time during which service delivery models were substantially altered. In particular, restrictions on in‐person consultations accelerated the uptake of telehealth and introduced new barriers to access, making this period highly relevant for understanding changes to communication management in clinical practice. Clinician‐researchers from the site aimed to evaluate the service, which accepts referrals from a wide geographical catchment. Ethical approval was obtained from the Sydney Local Health District Human Research and Ethics Committee (HREC Protocol 2022/PID03015). Patients were identified via screening of the practice's electronic medical record (eMR).

2.2. Data Collection

Clinical data were extracted from the eMR by C.C. and including participant demographics (age, gender), primary diagnosis, consultation‐level variables including the reason for consultation, number of consultations per patient and whether a full communication assessment was recommended and subsequently completed. For the purpose of this audit, consultations were defined as discrete episodes of care initiated by a referral. Some patients received multiple consultations over the study period. Quantitative data captured the proportion of participants recommended for communication assessment and subsequent management plan and the proportion who received this.

Qualitative data were derived from Speech Pathology clinical reports documenting assessment findings (oromotor, communication and swallowing assessment), recommendations and follow up outcomes. These reports contained narrative descriptions of communication abilities, contextual factors, service access issues and clinician observations regarding facilitators and barriers to communication assessment. An inductive thematic content analysis was undertaken following the approach described by Elo and Kyngäs (2008). Two researchers (C.C. and E.C.) independently familiarised themselves with the dataset through repeated reading of clinical reports. Initial open coding was performed line‐by‐line, generating codes that reflected explicit references to factors influencing access to communication assessment. Codes were then grouped into sub‐themes based on conceptual similarity. Sub‐themes were subsequently organised into higher‐order themes representing facilitators and barriers influencing participants' access to communication assessment. Coding frameworks were compared and refined through discussion, with discrepancies resolved by consensus. An audit trail was maintained to enhance transparency and rigour.

Themes were developed based on how facilitators and barriers influenced participants' access to communication assessment, rather than frequency alone.

2.3. Inclusion and Exclusion Criteria

Patients were eligible for inclusion if they were aged ≥ 18 years and were referred for either a telehealth or a face‐to‐face consultation. Patients were excluded if they were under the age of 18 or did not follow through with the recommended consultation.

2.4. Statistical Analysis

A mixed methods approach was employed with quantitative data analysed using descriptive statistics. Continuous variables are presented as mean (SD) or median (range). Normality of data was assessed using the Shapiro–Wilk test and visual inspections of histograms. All analysis was performed using Microsoft Excel for Mac. This was conducted separately from the qualitative component, which was examined through thematic content analysis.

3. Results

3.1. Demographics and Clinical Characteristics

A total of 276 unique patients were identified via the eMR search, accounting for 497 discrete consultations over the defined study period. Several patients received more than one consultation, accounting for the difference between patient‐level (n = 276) and consultation‐level (n = 487) data reported below. The mean age was 47.5 (SD 12.3). The cohort was evenly distributed by sex, with 142 females (51%) and 134 males (49%). While the most common diagnosis was intellectual disability (n = 251, 90.9%), a number of patients presented with multiple diagnoses and referral reasons, reflecting the complexity of the caseload (Table 1).

TABLE 1.

Participant and consultation characteristics.

Age mean (SD)	47.5 (12.3)
Range	20–75
Female	142 (51.4%)
Male	134 (48.6%)
Primary reason for consultation	N = 497
Mealtime/swallowing management	381 (76.7%)
Communication assessment	116 (23.3%)
Number of consultations per patient
Single	276
Multiple	221

Note: Consultations represent discrete episodes of care. Some patients received more than one consultation during the study period.

3.2. Communication Assessment or Management Consultation

Participants had an average of two consultations with the speech pathologist (range 1–7). Of the 497 consultations, 381 (76.7%) were initiated for swallowing assessment or routine mealtime management, and 116 (23.3%) were initiated primarily for communication assessment and management. Of the 381 swallowing or mealtime management consultations, all included a communication screen component. Following screening, 234 consultations (61.4%) resulted in a recommendation for a full communication assessment to optimise communication skills through individualised therapy and/or environmental modifications. Only 93 (39.7%) of those recommended to get a communication assessment received this service.

3.3. Communication Assessment Facilitators and Barriers (Table 2)

TABLE 2.

Thematic analysis of primary factors influencing completion of communication assessments.

Theme	Frequency (n, %) a
Facilitators
Government funding allocation	28 (30%)
Unpaid‐Carer/Guardian advocacy	21 (23%)
Paid carers in residence	32 (34%)
Challenging behaviours linked to communication breakdowns	38 (41%)
Multiple consultations	25 (27%)
Speech pathologist advocacy	93 (100%)
Barriers
Communication ranked lower priority	109 (77%)
Lack of funding/cost barriers	113 (80%)

^a Frequency represents the number of clinical reports in which the factor was explicitly documented. Multiple factors could be coded within a single report.

Analysis of clinical reports identified a range of facilitators and barriers influencing whether a recommended communication assessment was completed. Table 2 presents the overarching themes and sub‐themes, alongside their frequency of occurrence across the dataset.

Several factors were reported to facilitate a communication assessment and management plan being completed for the 234 who were recommended one following their swallowing assessment. These included participants who had government funding allocation, where participants had sufficient NDIS or alternative funding to support communication therapy, a carer or guardian who acted as an advocate, having consistent carers in their place of residence (specifically who notice change over time) and could support engagement and actively pursued follow‐up services. Participants were also more likely to have a communication assessment actioned when they had multiple consultations for swallow management, where the speech pathologist had more opportunities to act as an advocate for further communication support. For example, clinical notes frequently documented that “communication needs were raised repeatedly across consultations but could only proceed once funding approval was secured” or “(carer's name) advocacy documented conversation samples and behaviours relating to communication breakdown in (participant's) communication book—this was pivotal in progressing assessment recommendations”.

There were many barriers to accessing a communication assessment and subsequent management plan, evidenced by the low percentage of participants who had their recommendations actioned and predominantly reflected systemic constraints. The most commonly reported barrier was communication being ranked a lower clinical priority than dysphagia, often due to insufficient funding in the participant's allocated budget. This was especially evidenced in those with less or no funding from a government body given the cost of consultations and extensive waiting lists in alternative public settings. There were a smaller number of participants who were recommended to consult with psychology to optimise engagement and manage behavioural concerns prior to speech pathology assessment. Examples from clinical reports include: “funding was exhausted on mealtime management plan” or that communication support was deferred despite an identified need.

4. Discussion

This study provides evidence of a pattern in which dysphagia assessment is prioritised over communication assessment for adults with intellectual disability living in group homes, despite identified communication needs. While swallowing management is essential for health and safety, the findings demonstrate that communication assessment—critical for autonomy, behaviour regulation and quality of life—is frequently deprioritised once funding and service constraints are encountered.

By integrating quantitative service audit data with qualitative analysis of clinical documentation, this study highlights how funding structures and service models inadvertently reinforce this prioritisation. Importantly, the findings suggest that communication assessment is more likely to proceed when behaviours escalate or when advocacy is sustained, rather than when need is identified alone. This reactive model risks delaying intervention until secondary consequences emerge. This is unfortunate, given that there is strong evidence that training carers to provide active communication support improved patients' engagement in communicative interactions (Iacono et al. 2019).

This study identifies a potential unmet need for adults with disabilities, residing in group homes, who require a communication assessment, management and/or support. While the majority of participants in this study were referred for a swallowing assessment, it is standard practice for speech pathologists to screen for communication breakdowns and opportunities to support communicative competence (Speech Pathology Australia 2020). We identified that a large number of patients who demonstrated long‐standing communication disorders were sub‐optimally supported and their disorder was affecting their behaviour and quality of life. These patients were recommended to undergo a dedicated communication assessment; however, a relatively small percentage were able to access this. This was primarily related to inadequate funding. It should not be surprising to health care providers and funding bodies that communication needs require lifelong support. It has been well documented that adults with intellectual disability have high rates of communication difficulties (Smith et al. 2020).

Given patients with communication impairments are known to experience poorer health outcomes than those without (Stransky et al. 2018), and poorer quality of life (García et al. 2020), it is imperative that this is addressed.

This study has several limitations; first, this study was conducted retrospectively, with participants referred to a single institution. This limits the generalisation of the findings. Further to this, given it was retrospective, the authors were unable to conduct prospective interviewing or surveys as to the factors that facilitated and formulated barriers to accessing communication support, and thematic analysis was restricted to eMR notes and participant reports only. Future studies could conduct mixed method analysis from the perspectives of different stakeholders as to the opportunities to improve access to communication assessment and management, and then the subsequent impact on health and quality of life outcomes.

5. Conclusion

This study reveals a significant gap between the communication support recommended for adults with disabilities in group homes and the services actually provided. Addressing systemic barriers—particularly funding and prioritisation—is essential to ensure equitable access to communication assessment and intervention where indicated.

Author Contributions

Caitlin Chaney: study conceptualisation, data collation, manuscript writing, manuscript revision. Ann Nguyen Do: data collation, data analysis, manuscript revision. Amanda Elitawi: data collation, data analysis, manuscript revision. Brooke Carrier: data collation, data analysis, manuscript revision. Emma Charters: study conceptualisation, data analysis, manuscript writing, manuscript revision.

Funding

The authors have nothing to report.

Ethics Statement

Ethical approval was obtained from the Sydney Local Health District Human Research and Ethics Committee (HREC Protocol 2022/PID03015).

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.