The residential care of adults with autism, intellectual disabilities and challenging behaviours represents a huge test for institutions in the social sector. Recent years have seen exponential growth in the number of users with this profile and this has increased day-to-day demands and often outstripped the resources and capacities of teams that provide them with support. The TEADI (ASD and ID) programme was established in 2016 with a view to improving the quality of life of this group by transforming a residential environment through the principles of TEACCH methodology and implementing a system of review and ongoing improvement with which to guarantee quality and excellence in the care of adults on the autism spectrum. This programme is implemented at a residential care unit for adults with intellectual disabilities at the Centre Mare de Déu de Montserrat of the Sisters Hospitallers of Caldes de Malavella and has the support of the centre’s management, technical management and entire care team, as well as users’ families and guardians.
In 2016, the residential care unit for adults with intellectual disabilities of the Centre Mare de Déu de Montserrat of the Sisters Hospitallers of Caldes de Malavella introduced the TEADI programme with a view to improving the quality of life of people with autism or intellectual disabilities, by establishing a residential environment based on the principles of TEACCH methodology, and implementing a system of review and ongoing improvement to guarantee quality and excellence in the care of adults on the autism spectrum.
The TEADI programme involves evaluation of different parameters with which to determine the complexity of the users in care and the quality of life of people in the residential unit with ID and ASD.
The complexity of the users in care at the residential unit was evaluated with the following tools:
1. The ICAP scale to determine the level of support required by the users in care at the residential unit.
2. The ABC-ECA scale to determine behavioural difficulties.
3. Number of users in care on the TEADI programme who meet the established criteria (ID, ASD and challenging behaviour).
The users’ quality of life was evaluated indirectly and through the recording, throughout the implementation of the TEADI programme, of two variables for determining the quality of support and the effectiveness of the intervention programme:
• Number of physical restraints applied. These always occur in the presence of high-intensity challenging behaviour.
• Number of “rescue drugs” administered. The administration of rescue medication is always associated with the presence or absence of challenging behaviour.
With consideration for these variables, prior to implementation of the TEADI programme, the following situation was observed:
• The residential unit in which the TEADI programme was to be implemented included 7 users, all of whom presented ASD, ID and challenging behaviours.
• According to the ICAP assessment, of these 7 users most (4) required general support while the others required extensive support.
• Within the parameters measured with the ABC-ECA scale and with reference to behaviour types, the scores for agitation (19), lethargy (26.57) and stereotyping stood out.
• In the 12 months prior to the implementation of the TEADI programme, an average of 26.25 physical restraints per month and of 2.91 administrations of oral rescue drugs were recorded.
• These data reflected the presence of serious behavioural problems in this residential environment that cares for highly complex users in need of support.
On the basis of this initial situation, in the first year, implementation of the TEADI programme was divided into 3 differentiated phases:
1. Transformation of the human environment. First, individualised training (5) and, later, group training (1) was given to explain to the team the fundamentals of TEACCH methodology, how to apply it, and its bases of implementation in people with autism. This initial training was given in the first month of the programme. The objective of this first phase is to define a “culture of autism” based on people with ASD and ID.
2. Transformation of the physical and programmatic environment. Second, TEACCH methodology was applied to transform the environment, support was given to the team and users, and doubts were cleared up. The core objective of this second phase was to transform the physical and programmatic environment to suit the characteristics and needs of the people on the spectrum.
3. Ongoing evaluation of the programme’s implementation and new proposals for improvement.
There follows a detailed description of how the TEADI programme was implemented in the phases envisaged in the previous section:
PHASE 1. TRANSFORMATION OF THE HUMAN ENVIRONMENT.
In a social environment in which support is provided, initial transformation must essentially be addressed to people. The first task in implementing the TEADI programme was therefore to train all the teams in this TEACCH-based work methodology. Very short (15 minutes) individual and intensive sessions were given to train the direct care team in some basic concepts. Some of the topics dealt with in these sessions were the nature and needs of people with autism, the fundamentals of TEACCH methodology, intervention in behaviour with people on the spectrum and modifications to the physical and programmatic environment.
Longer training (6 hours), addressed to developing TEACCH methodology and to dealing with the main characteristics of people on the autism spectrum, was subsequently given. This training was aimed at all care professionals to cover the whole multidisciplinary team.
It was given during the first month in which the TEADI programme was implemented and subsequently repeated each year to provide continuity to the programme and to introduce it to new professionals.
PHASE 2. TRANSFORMATION OF THE PHYSICAL AND PROGRAMMATIC ENVIRONMENT
In TEACCH methodology, transforming the residential environment is addressed in this second phase. The residential environment must be clear, unambiguous and able to offer communication opportunities to users on the autism spectrum. Effort is made to establish differentiated environments, which make it easy to determine whether it is a group or individual dynamic and to facilitate the acquisition of adaptive skills. Likewise, environments conducive to relaxation are generated and an effort is made to simplify transitions among activities.
PHASE 3. ONGOING EVALUATION OF THE TEADI PROGRAMME
One of the objectives of the TEADI programme is to establish evaluation tools for ongoing assessment of its effectiveness. Evaluation of the complexity of the users (ICAP, ABC-ECA and number of users) and records of challenging behaviours (physical restraints and rescue drugs) are therefore ongoing throughout the project and provide the grounds upon which to establish new intervention strategies. Evaluation is performed annually, from the implementation of the TEADI programme onwards.
• To improve the quality of life of adults with autism and intellectual disabilities.
• To become a benchmark in the social sector for the specialized care of people on the autism spectrum.
Increase in quality. Implementation of this intervention programme provides for improved quality of life of the people with ASD and ID whom we support. Over the 6 years of the programme, they have grown in number and complexity while behavioural problems and resulting measures have clearly and drastically decreased. Another benefit of the programme is the use of quantitative measures with which to constantly re-evaluate the effectiveness of intervention and thus facilitate our decision-making.
Greater brand reputation. Participation at congresses and conferences indicate that we have become a benchmark within the sector, as demonstrated by the Good Practice Award from the Tecnosocial Andalusia congress, Málaga (2022) and participation at the Spanish Congress on Behavioural Disorders in 2017 and 2019, and at the European EAMHID congress in 2019. As well as participation at scientific congresses, in the last few years we have given training and advice to entities in the social sector and to health centres that provide care for the adult population with autism, and we have also worked with vocational training centres in our local area.
To evaluate the effectiveness of the TEADI programme, we analyzed the characteristics and presence of behavioural problems (ABC-ECA Scale), the reactive measures applied in this residential environment when they arise (mechanical restraint of the four limbs) and the use of rescue drug treatments. Data on these measures were collected twelve months prior to the start of intervention and over the subsequent years.
We divided the project into 3 stages for better analysis of the results obtained with the TEADI programme:
STAGE ONE: Implementation of the TEADI programme and initial results (2016-2018).
According to reference data collected during the year prior to the implementation of the TEADI programme, use of physical restraint (26.25 acts per month/315 acts of physical restraint applied) and rescue drugs (2.91 per month/35 drugs administered for agitation) was high, for a group of 7 users with ASD and ID.
These data contrast with a dramatic reduction in the use of these methods after introduction of the TEADI programme: an average of only 5 monthly acts of restraint (32 acts per year), and of 0.87 rescue drugs (7 rescue drugs per year). The results are even more significant bearing in mind that these averages are for a residential environment that accommodates more users on the autism spectrum and with ID (10).
STAGE TWO: Review of results and consideration of new lines of intervention (2018-2020).
Ongoing evaluation of the project also involves consideration of how to continue improving on the basis of the results obtained. We therefore analysed the data for 2018 more closely and observed that reactive measures (physical restraint and rescue drugs) and consequently the presence of challenging behaviour was mainly concentrated in users who do not use language. In other words, users with ASD and ID with the greatest communication difficulties are also those for whom more physical restraint in the residential unit was applied (87.5%) and more rescue drugs (100%) were administered.
Continued improvement of results requires emphasis on this user profile. We are therefore considering taking a further step and adding 24-hour multi-sensory stimulation (MSS24) to our work methodology. This approach would improve communicative opportunities (through better sensory environments) for the users who need them most. The (MSS24) is intended to provide sensory enriching environments 24 hours a day and at all times and to take each user’s sensory profile into account in the work plan. By implementing this work methodology within the TEADI programme it will be possible to reduce the use of physical restraint (2 monthly acts of restraint) and rescue drugs (0.58).
STAGE THREE: The TEADI programme as a response to the pandemic (2020-2022).
In this recent period, we considered the TEADI programme as the best response in our residential environment to the onset of the COVID-19 pandemic.
Restrictive measures resulting from COVID-19 make the day-to-day life in residential environments very complicated and even more bearing in mind the difficulties of people with autism and ID. We therefore believed that implementation of the TEADI programme and use of the MSS24 would enable us to alleviate these circumstances and maintain previous results. The application of physical restraint (1.6 per month) was further reduced and the use of rescue drugs (1 per month) increased compared to the previous analysis. It should be noted that these are the results from a group of 15 users, which is more than double the number of users who initially took part in the TEADI programme in 2016.
A second indirect indicator of the improvement in the quality of life of users was satisfaction of families and guardians. From the outset, they were a fundamental part of the transformation of the residential environment and took active part in implementing TEACCH methodology. We accompanied them throughout the process to help them organize outings and overnight stays based on this working methodology. We therefore guaranteed continuity in intervention. In these family environments too, there occurred a dramatic reduction in challenging behaviour. In some cases this has led to an increase in the length of visits and in others in more overnight stays. In all events it has yielded an improvement in relations and ties with the family environment.
Published on*** 13 Jun 2022
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