Search results

Individuals with intellectual disability have an increased predisposition to other co-morbid physical health conditions, mental illness and neurodevelopmental conditions including autism spectrum condition. There are challenges in diagnosing autism in adults with intellectual disability, and these are often attributes to the complexities in symptoms. The purpose of this paper is to describe the development of the autism diagnostic aid (ADA) tool and face and content validation of its properties.

The ADA tool was developed following a detailed scoping exercise which included literature reviews, observations and discussion with wider multi-disciplinary team members. A face and content validation after consultation with eight experts who are trained and routinely perform assessments for autism spectrum disorders. The experts also have expertise in working with individuals with intellectual disability.

The experts agreed that the ADA tool is appropriate to the targeted construct and assessment objectives as a diagnostic aid in the assessment of autism in adults with intellectual disability. They also determined that the content of ADA tool was valid for its use as a diagnostic aid in the diagnosis of adults with intellectual disability.

The ADA tool was considered a valid tool from the expert’s perspective. It was identified to have a good face and content validity. To the best of the authors’ knowledge, the ADA is first of its kind tool, developed specifically to aid clinicians with autism assessments in adults with intellectual disability.

This tool could potentially help with timely assessment and help with providing appropriate intervention but would require further exploration.

To the best of the authors’ knowledge, this is the first of its kind tool for the assessment of autism in adults with intellectual disability.

People with intellectual disability die prematurely and from avoidable causes. Innovative solutions and proactive strategies have been limited in addressing this disparity. This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality.

This study used population health management principles to conceptualise a risk stratification tool for avoidable deaths in people with intellectual disability. A review of the literature examined the existing evidence of causes of death in people with intellectual disability. A qualitative methodology using focused groups of specialist clinicians was used to understand the factors that contributed towards avoidable deaths in people with intellectual disability. Delphi groups were used for consensus on the variables for inclusion in the risk stratification tool (Decision Support Tool for Physical Health).

A pilot of the Decision Support Tool for Physical Health within specialist intellectual disability service demonstrated effective utility and acceptability in clinical practice. The tool has also demonstrated good face and construct validity. A further study is currently being completed to examine concurrent and predictive validity of the tool.

To the best of the authors’ knowledge, this is the only study that has used a systematic approach to designing a risk stratification tool for identifying premature mortality in people with intellectual disability. The Decision Support Tool for Physical Health in clinical practice aims to guide clinical responses and prioritise those identified as at higher risk of avoidable deaths.

There are no existing tools to capture resources needed to support people with intellectual disability in an inpatient setting on an individual patient basis. The purpose of this paper is to describe the development of a new tool called Universal Needs Based Resource Assessment (UNBRA).

Using the Delphi method, focus groups were used to generate factors determining resource use. From these, themes were identified, a scoring system was created and the UNBRA tool was developed. This was piloted in two NHS inpatient units and modified following feedback.

The UNBRA tool holistically assesses resource requirements of an individual with intellectual disability supported in an inpatient setting. It considers ten factors grouped into the six themes of staffing, indirect work, clinical/ multi-disciplinary work, incidents, carer link activity and discharge process. UNBRA scores allow intra- and interpersonal comparison as well as comparison between units and can support resource allocation and operational decision-making.

To the best of the authors’ knowledge, there is no suitable existing tool to capture individual resource requirements of patients in intellectual inpatient settings. The development of the UNBRA tool fills this gap.

This paper aims to improve community care for people with intellectual disabilities (ID) and/or autism. Lack of coordination between agencies leads to children and young people with the most complex needs falling between services. The North West Operational Delivery Network (ODN) for learning disability and autism set out to develop a model of care for mental health services for children and young people with ID and/or autism in North West England that would improve coordination between services and lead to better community care.

The ODN held a series of good practice events and consultations with stakeholders in North West England to look at gaps in service provision, national guidelines and agree on a pathway for services.

The ODN decided to use the THRIVE framework as the basis for a specific model of care. Interventions were mapped against the THRIVE groupings, including pathways and team specifications for assessment and support for children with autism, and models for child and adolescent mental health service support for ID and/or autism, for keeping children and young people with behaviour that challenges in the community and transition.

This model aims to provide the North West England region with a clear multi-agency approach for supporting the needs of this population and supports multi-agency commissioning, gap analysis, earlier intervention and improving health outcomes for this population.

The purpose of the study is to identify and ascertain if there were any validated tools for diagnosing or screening autism spectrum disorder in adults with ID. The estimated prevalence of intellectual disability (ID) in the general population is about 10.37/1,000 population (Maulik et al., 2011). In total, 1 out of 4 individuals with ID suffers from an autism spectrum disorder (ASD) (Sappok et al., 2010). Early diagnosis and support for ASD is key to having a good quality of life. The diagnosis of ASD in people with an ID presents its own challenges and it is likely under-identification of ASD amongst adults with ID by about 20% to 30% (Emerson and Baines, 2010).

Studies were selected based on the following criteria: studies that reported either screening or diagnostic tools for ASD, participants had an ID i.e. a mean IQ of <70, adults i.e. participants were >18 years of age at the time of entry to the study and articles reported either sensitivity, specificity or area under the curve. Relevant studies that were published up to January 2020 were identified from EMBASE, PsychINFO, CINAHL and PubMed. In total, 75 papers were identified of which 15 papers met the criteria.

The screening or diagnostic tools currently in use is dependant on the degree of ID. A number of the tools had good psychometric properties and utility when used in people with specific degrees of ID or when used in combination with another screening or diagnostic tool. The authors could not identify a diagnostic tool that could be used across all levels of severity of ID unless used in combination. Hence, concluded that there is a need for a diagnostic tool with good psychometric properties for the assessment of ASD in adults with all degree of ID within a reasonable time period without the need for an additional tool to be used in conjunction.

Currently, the “gold standard” for diagnosing ASD is a lengthy and time-consuming process carried out by trained multi-disciplinary team members who assess historical, behavioural and parent/carer report to arrive at a diagnosis. There are a number of tools that have been developed to aid diagnosis. However, it is important to identify the tools that can optimise the procedures and are also time-efficient.

The purpose of this paper is to provide a professional consensus position with regard to the provision of specialist inpatient rehabilitation services for people with intellectual disability (ID), autism and mental health, behavioural or forensic needs in the UK.

The concept of rehabilitation is discussed, as well as the functions and goals of specialist inpatient rehabilitation services with regard to the aforementioned contexts. Current use of rehabilitation beds is considered, both on a regional and national scale, as well as various outcome measures, including effectiveness, patient safety and patient experience.

There is a clear need for specialist inpatient rehabilitation services, though historically there have been instances of inappropriate admissions, as well as lengthy inpatient stays that could have been significantly reduced with the right type of community support package. Such services should be subjected to rigorous measurement of outcome measures, to determine that patients within such services are receiving a consistently high standard of care. Additionally, amendments to current legal frameworks should be considered, with a view to accommodating for individuals with capacity who require continuous community-based supervision.

To the best of the author’s knowledge, this is the first article detailing a professional consensus position for specialist inpatient rehabilitation services for people with ID, autism and mental health, behavioural or forensic needs.

The purpose of this paper is to outline what early support should be offered to children and young people with neurodevelopmental conditions including those who are autistic or have intellectual disability. A review of all child and adolescent mental health services (CAMHS) services in the Northwest completed by NHS England and Improvement (Doyle and Ryan, 2021) found that there was no clear Tier 2 offer (for mild to moderate mental health issues) for autistic children and young people or for those with intellectual disability. Following this review, a project group that had developed a model for mental health services for autistic children and young people and for those with intellectual disability (Wee et al., 2021) was tasked with articulating the “Getting Help” offer for children and young people with neurodevelopmental conditions, including intellectual disability.

A working group was created consisting of professionals from mental health, education and local authority and lived experience representatives of coproduction partners. A brief review of the background literature was also conducted. Six meetings were held to create a framework for the “Getting Help” offer and to discuss what the offer should be based on professional expertise and lived experience.

Recommendations for the Getting Help multi-agency offer included pre- and post-assessment support as part of a single attention deficit hyperactivity disorder/autism/neurodevelopmental pathway, community support for children with intellectual disability, access to adapted mental health support and the need for early recognition and support for avoidant and restrictive food intake disorder. Key themes from working group discussions included the reduction in the quality of services experienced by children and families due to silo working, which increased the risk of falling between multi-agency services and led to early signs of neurodevelopmental needs, or mental health issues being missed. Another theme was aiming for equity of access and outcomes.

This work is a response to a coproduced review of CAMHS in the Northwest and incorporates the lived experience of young people and families. It also adopts a holistic multi-agency neurodevelopmental approach rather than focusing on a single diagnosis or service.