Key Rights in ABA Practice from Jigsaw Trust on Vimeo.
Approximately 50% of autistic people and 15% of intellectual disability engage in behaviours that challenge. Such behaviors are associated with escalating reductions in their quality of life. They may lead to the use of restrictive practices such as locking doors, seclusion, manual or physical restraint, over-medication, physical abuse and institutionalisation.
Behavior analysts who work with people with intellectual and developmental disabilities and behaviors that challenge will often conduct functional assessments to identify the functions of challenging behaviour and develop behaviour support plans to reduce behaviors that challenge. As you know from earlier modules, this includes making antecedents alterations to the physical and social environment, using differential reinforcement and teaching alternative means of accessing the same outcomes.
However, behaviour analysts also work with people with intellectual disabilities who do not engage in any behaviours that challenge. In these circumstances, they work to improve overall quality of life by teaching adaptive behaviors that a client might not possess. This may include targeting pivotal behaviors and behavioural cusps. Assessments such as the AFLS and EFL can be used to generate a picture of a person?s learning and the behaviour analyst may put in place interventions to teach skills related to communication, socialising, leisure, work or hygiene and self-care.
When selecting targets, we seek to ensure that our goals and intervention have social validity. One way of ensuring this is by critically reflecting on these goals and intervention methods from the perspective of the clients rights.
The Right to Effective Treatment
The Right to Effective Treatment is a 1988 position paper authored by Van Houten and his colleages. It was later adopted by the Association for Behavior Analysis International.It outlines that all people with special needs should have the following 6 rights:
- The right to a therapeutic environment.
- The right to services whose overriding goal is personal welfare
- The right to treatment by a competent behavior analyst
- The right to programs that teach functional skills
- The right to behavioral assessment and ongoing evaluation
- The right to the most effective treatment procedures available.
The right to a therapeutic environment
The authors of the position paper outline what they think constitutes a therapeutic environment for those with conditions such as IDDs. This includes a safe, humane and responsive physical and social environment where a learner has access to therapeutic services, leisure activities and enjoyable materials. It outlines that client choice is an important factor with regard to making available such activities and materials.
The authors also emphasise the importance of support that is characterised by positive interactions and orientated towards ensuring enjoyment, learning and independence while ensure that the fewest restrictions necessary are imposed on a learner?s freedoms while ensuring safety and development.
The right to services whose overriding goal is personal welfare
In this section of the paper, the authors made clear that the primary purpose of behavioural interventions is to assist learners in acquiring functional skills that promote independence. Practitioners should consider both the immediate and longer term impact of interventions while involving the learner (or a proxy where appropriate) in making any decisions related to intervention.
It recommends the use of Peer Review Committees (made up of behaviour analysts to ensure the clinical appropriateness of interventions) and Human Rights Committees (made up consumers, advocates and interested citizens to ensure that any restrictive interventions have social acceptability). Through the use of such committees, it is intended that professional competence aided by peer and human rights review will ensure that client welfare will remain at the heart of all decision-making.
The right to treatment by a competent behavior analyst
This right relates to the competence of those responsible for designing behavioural interventions. The behaviour analysts should have extensive training in behavioural principles, methods and interventions. In addition, they should have received adequate practical experience and supervision with the relevant client population. The authors also recommended the direct involvement of a doctoral level behaviour analyst (BCBA-D) where problems are complex and there is a high degree of risk.
The right to programs that teach functional skills
Within behaviour analysis, unless proven otherwise, it is assumed that a learner is capable of full participation in all aspects of community life and they have a right to participate in their communities. Decisions regarding the selection of goals should not be based on preconceptions of an individual?s potential or limitations.
The ultimate goal of all services is to increase the ability of individuals to function effectively in both their immediate environment and the larger society. As such there is a focus on acquisition, generalisation and maintenance of skills. Goal selection should be focused on:
- Enabling a learner to gain wider access to preferred materials, activities, or social interaction
- Increasing their ability to terminate or reduce disliked stimulation
- Eliminating or reducing barriers to independence and dangerous behaviors
- Developing repertories that help the learner contribute to their communities
The right to behavioral assessment and ongoing evaluation
Traditional approaches to teaching people with IDD often used a ?train and hope? approach. These approaches were also combined with non-individualised teaching techniques.
This right emphasises the need for assessment before intervention. This applies in the case of behaviours that challenge with regard to functional assessment and to the teaching of other skills such as self-care skills, social skills or academic skills using assessment tools such as the EFLS, AFLS or ELCAR.
Successful intervention requires ongoing evaluation in the form of objective data to determine the effects of treatment, to quickly identify unanticipated problems, and, if necessary, to modify the intervention.
The right to the most effective treatment procedures available
The authors of the paper argue that an individual is entitled to effective and scientifically validated interventions. They also argue that ABA professionals have an obligation to only use those techniques that have been demonstrated by research to be effective, to inform consumers about the potential advantages and disadvantages of these techniques and to search continuously for the optimal means of changing behaviour.
They also emphasise that this means that exposure of an individual to restrictive procedures is unacceptable unless it can be shown that such procedures are absolutely necessary to produce safe and significant changes. The authors notes that in some cases a slow-acting but non-restrictive procedure could be considered highly restrictive if the prolonged intervention increases risks to the client.
Reflecting on the Right to Effective Treatment
Think back to Lesson 1 in this module when we described the 9 ethical principles.
Do No Harm
Respecting Autonomy
Benefiting Others
Being Just
Being Faithful
According Dignity
Treating Others With Care And Compassion
Pursuit of Excellence
Accepting Accountability
Can you see how these principles are reflected in the rights discussed within the Right to Effective Treatment position paper? Can you see the influence of normalisation theory on discussions of the right to participate in the community and the right to independence? Perhaps, you also see the influence of using a person-centred approach when the paper emphasises the importance of participatory decision making and incorporating a client?s preferences?
It is also worth considering the fact that the paper was written in 1988. While many of the ideas expressed within the paper are now mainstream within providers of services to people with IDD, the approach advocated by the authors contrasted with how services were often provided at the time. Next we will look at the issues of restraint and seclusion.
ABAI Position Statement on Restraint and Seclusion 2010
The Association for Behavior Analysis International (ABAI) position statement on restraint and seclusion was published against a background where many people were concerned about the inappropriate use of restraint and other restrictive interventions in services catering for people with intellectual and developmental disabilities.
ABAI?s statement notes its opposition to the inappropriate or unnecessary use of seclusion, restraint and other intrusive interventions.
In case you are unfamiliar with these terms, let?s review them:
- Restraints include the use of physical force, mechanical devices, or chemicals to immobilize a person
- Seclusion is a type of restraint whereby a person is confined to a room from which the person cannot exit freely.
- Intrusive interventions can be understood as interventions that significantly impinge upon a person?s liberty and which have low social validity. Within ABA, there is a four-level model of intrusiveness. Let?s look at some examples of how procedures are classified.
- Level 1: Differential Reinforcement Procedures
- Level 2: An extinction procedure that involves terminating access to a reinforcer that was already available
- Level 3: Low level punishment procedures response-cost procedures (removing specific amounts of reinforcement contingent on challenging behavior) and time-out procedures (denying a student the opportunity to receive reinforcement for a fixed period of time)
- Level 4: Typically positive punishment procedures (e.g. the presentation of aversive stimuli or contingent exercise).
The authors of the ABAI position statement state that even severe behaviour problems can be effectively addressed without the use of restrictive interventions, but also note that there may be rare cases where the use of seclusion, restraint or other intrusive interventions may be necessary. They argue that the use of such interventions requires meticulous clinical oversight and controls
Three principles are suggested to guide the use of these restrictive interventions.
- The Welfare of the Individual Served is the Highest Priority ? the best interests of the client must take precedence over the broader interests or agendas of institutions or organizations. A decision to use a restrictive practice should only be made by a team that includes:
- Professionals with knowledge of relevant research and best practice
- The client and/or their legal guardians
- Individuals (and Parents/Guardians) Have a Right to Choose – Organizations should not limit the rights of those legally responsible for an individual to choose interventions that are necessary, safe, and effective
- The Principle of Least Restrictiveness ? In any scenario, the least restrictive intervention is defined as that intervention that affords the most favorable risk to benefit ratio to the client.
- Calculating this ratio requires:
- the consideration of probability of treatment success
- the anticipated duration of treatment
- any distress caused by procedures
- any distress caused by the behavior itself
The position statement notes that while emergency restrictive procedures may be required in the case of dangerous or harmful behaviour that place an individual or those around them at risk, the procedures should only be considered when less intrusive procedures have been attempted and failed or otherwise determined to be insufficient.
It goes on to note that the individual and/or those with parental or guardianship responsibilities must be allowed to participate in the development of a behaviour plan and that interventions involving restraint or seclusion should only be used with full consent. Such consent should meet the standards of “Information,” “Capacity,” and “Voluntary.” The individual and their guardian must be informed of the methods, risks, and effects of possible intervention procedures, which include the options to both use and not use restraint.
When using restraint or seclusion, the position statement emphasises that those implementing such techniques need to be competent. They should only be used by staff who are fully trained in their use, who regularly receive in-service training, who have demonstrated competence using objective measure of performance evaluation and who are closely supervised by a BCBA or other trained professional.
The take home points from this paper are that:
- Practitioners should use the least restrictive intervention methods
- Restraint, seclusion and other intrusive interventions are only required in rare cases as less intrusive methods have been demonstrated to be effective in addressing severe challenging behaviors.
- In the rare circumstances where restrictive interventions are required, the client and/or their legal representative should be involved in the planning process and consent should be obtained
- The use of restrictive interventions requires meticulous clinical oversight and controls
- Those implementing restrictive interventions should have received relevant training and be closely supervised by a competent professional.
We will now look at another seminal paper in ABA ethics paper. The paper is titled ?Balancing the Right to Habilitation with the Right to Personal Liberties: The Rights of People with Developmental Disabilities to Eat Too Many Doughnuts and take a Nap”.
Balancing the Right to Habilitation with the Right to Personal Liberties
This seminal article was authored by Diane Bannerman and her colleagues. It often overlaps significantly with many of the rights and principles that featured in The Right to Effective Treatment, however it discusses the right to choice of people with IDD in greater detail.
Bannerman begins by situating the right to habilitation within its historical context ? noting that a long history of inadequate service provision led to this right being enshrined in law within the USA.
The authors then go on to describe choice ? more precisely uncoerced choice. Uncoerced choice means that there are no consequences for selecting an option except the natural consequences of the choice itself.
Bannerman and her colleagues go on to note that the choices of people with IDD are often compromised by professionals in the name of habilitation. Their choices might be ignored with regard to intervention goals. For example, a professional would decide to teach a particular leisure activity that they like rather than one that the client already has an interest in. Similarly, parents or guardians might make choices on behalf of the client that reflect their own interests with regard to time, money, protectiveness or preference. They also noted that while choice might be permitted to a limited extent, it was not taught and that some learners require assistance with regard to identifying their preferences and communicating their choices.
Many of the limitations placed on people with IDD that Bannerman and colleagues discuss will be familiar to you from our discussions of the institutional models of support. They discuss:
- Clients not being allowed to choose the order of activities
- Clients being discouraged from taking breaks or selecting non-scheduled activities
- Staff picking out a client?s clothing
- Dietitians choosing a client?s meals.
While they note that the right to choice is often negated by those emphasising the right to habilitation, they argue that this need not be the case. Instead, they argue that choice making should be integrated into the habilitative process.
They argue that those providing support should:
- Emphasize teaching functional skills that are preferred by the client
- Ensure client input into what they learn and how they are taught
- Ensure that, where required, clients should be taught how to choose (i.e. decision-making, negotiation and communication)
- Provide choice within and between scheduled activities in work and residential settings
The authors advised readers to examine client refusals, unwise decisions and off-task behaviour from the perspective of choice. They should consider if allowing more choice or teaching more choices would be of benefit.
They noted that a choice to emphasize choice may require extra-time and teaching, but that this additional liberty may facilitate habilitation by increasing client satisfaction with goals and procedures.
They conclude that all people have the right to eat too many doughnuts and take a nap. But along with rights come responsibilities. Teaching clients how to exercise their freedoms responsibly should be an integral part of the habilitation process.
While learning, clients should be encouraged to make as many choices as their abilities allow, as long as these choices are not detrimental to the client or to others (e.g. self-injury or aggression). The authors counselled professionals to be vigilant in protecting the rights of all people to direct their lives as independently as possible.
Reflecting on Balancing the Right to Habilitation with the Right to Personal Liberties
Bannerman?s article has been very influential within behaviour analysis and beyond. It influenced legislation within the US that sought to readdress the imbalance between the right to habilitation and choice.
While similar to Van Houten?s position paper, Bannerman?s article emphasises the values of respecting autonomy to a greater extent. Having looked at the rights discussed in these papers, you should be able to see how selecting targets and interventions within ABA can be a complicated process. As an RBT, you have a responsibility to raise concerns if you think that there is a risk that your client?s rights might be infringed.
Time and Place
When we examined competency/capacity, we noted that with regard to age, parents or guardians often have responsibility for making decisions with regard to a child. We also discussed that where decisions need to be made on behalf of a child, this should be done in a way that recognises the child?s increasing capacity to make their own choices.
While parental consent might be sufficient if your client is a young child, we might consider using a behaviour contract with older learners.
A behavior contract is a plan of action that is negotiated between a client and other stakeholders. It typically includes both long and short term goals. In the contract the parties agree:
- A rule or expectation
- The consequences for adhering to or breaking the rule
The expectation and description of consequences should be presented in a way that you can be certain the client understands. Another factor to be considered with regard to balancing the right to habilitation and personal choice is the setting a client finds themselves in. While we might advocate for the right of a client to eat too many doughnuts and take a nap, there are some settings where authorities will not allow certain choices.
For example, as an RBT you might work with an adult client with severe and profound multiple disabilities in their home and at a local disability day care centre. While it might be necessary to teach the learner not to disrobe while at the day centre, extending that intervention (without adaptation) to the client?s home might represent a violation of their personal liberty.
Similarly, while working in a client?s home you might need to be careful not to, temporarily or permanently, deny them access to their personal belongings. However, if they were attending a vocational training centre where certain items were not allowed, you might need to teach them to cope with delays to accessing preferred items. Other potential solutions might include requesting that the client is allowed to bring or access certain activities at the vocational centre or finding a centre that better matches a clients needs and preferences.
RBTs frequently work in regulated sectors of service delivery (health, education and social care). The regulations in these sectors vary by jurisdiction. It is important to understand that these legal regulations must also be followed when considering balancing the right to habilitation and the right to personal liberty.