Table 1 NICE Guideline 11 – Recommendations when working with carers

Work in partnership with children, young people and adults who have a learning disability and behavior that challenges, and their family members or carers, and:

Collaborative working relationships are established with families. We are grounded in the basic principles of person-centered planning, social valorization and self-determinism.

Involve them in decisions about care.

We assess the amenability to psychological intervention of the person whose behavior challenges. Assessment is based on accepted psychological principles, e.g., the recommendations of Wright et al. [30] are followed to assess the individual’s amenability to CBT.

The psychologist to whom the case is allocated will then formulate a provisional treatment plan that will be discussed in a joint meeting between the person with behavior that challenges and the primary caregiver that accompanied them to the session.

Support self-management and encourage the person to be independent.

While psychotherapy and person-centered initiatives are oriented towards the optimization of the service user’s self-direction and autonomy, family members frequently disclose a range of social and economic realities that prevent persons with mild intellectual disability in particular from achieving the levels of independence that could be reasonably expected based on individual analyses of information-processing capabilities and comorbidity (or the lack thereof). As part of a non-exhaustive list, family members have described the following challenges:

Personal health and safety concerns: Even if a person with behavior that challenges has the potential to use public transport and community-resources independently, family carers seldom allow persons with ID to attend community events on their own because of Cape Town’s high levels of violent crime and the unreliability of local trains and buses. As far as we know, in the last five years only four service-users have independently made use of public transport to attend psychological services at the clinic.

Poor transport infrastructure: Consistent with the findings of at least one study, parents often report negative, stigmatizing attitudes from taxi drivers when using public transport with their children [31].

Unemployment: With an unemployment rate of approximately 28%, work in the open-labor market is seldom attempted [32]. In the last five years, we have seen only two people with ID and behavior that challenges in our service who is employed in the open-labor market. This may be considered against the background of generalized neglect of vocation and occupational opportunities for adults with ID in the Western Cape Province [33].

Lack of vocational training and opportunities: With the exception of the clinic’s Occupational Therapy Day Programme, the limited number of protected employment services as well as skills and development programs do not consider applications for placement if the person presents with significant levels of aggression or self-injurious behavior. The majority of persons who access the clinic have no recourse to attend vocational services; families of persons with intellectual disability and behavior that challenges are therefore left with limited pathways to pursue increased self-direction and autonomy in the working environment.

Build and maintain a continuing, trusting and non-judgemental relationship.

All the psychologists are grounded in Rogerian principles that were attained in postgraduate training and refined in formal supervision as trainee psychologists and independent practitioners.

Provide information:

About the nature of the person’s needs, and the range of interventions (for example, environmental, psychological and pharmacological interventions) and services available to them.

In a format and language appropriate to the person’s cognitive and developmental level (including spoken and picture formats, and written versions in Easy Read style and different colors and fonts).

A comprehensive, detailed account of available health, educational and social services is not offered to families, in part because the geographical inequities in such services within Cape Town make it difficult to develop a uniform information package that could be shared with families, that is tailored to their own social and economic context and circumstance. Government has attempted to address this, but access to South African government-funded services continues to show geo-political imbalances long after the demise of Apartheid: as a general pattern, the areas formerly reserved for Whites have proportionally more resources than the townships that developed on the outskirts of cities, such as Cape Town and rural areas [10]. Access to private health care and education is dependent on the family’s available finances. The psychologists at the clinic therefore provide information about available services only after they have acquired information about the family’s proximity to available resources, their ability to make use of public transport to access available services and whether there are adequate finances to ensure the sustainability of the intervention.

The psychologists adapt interviews according to the person’s intellectual and communication ability, e.g., language is simplified and recognized procedures are followed to assess the capacity of persons with mild and moderate intellectual disability to understand questions:

- First, questions are asked without adaptation and the person’s responses are gauged.

- Last, an observed failure to follow questions will result in the following adaptations that are introduced in graded fashion:

Language and grammar are simplified, usually by avoiding complex sentences whilst attempting to deliberately simplify vocabulary.

Because it is easier to comprehend the active form of language, questions are often signified by deliberate alterations in tone and voice inflection without reverting to the passive form of language, e.g., You were happy (ˈ◌) to go home (↗◌)?, as opposed to: Were you happy to go home? (minimal change in voice inflection).

If unsuccessful, questions are presented in multiple choice format.

As a final step, the person will be asked to demonstrate, either verbally or non-verbally, their preference when presented with two options.

The duration of interviews or psychotherapy sessions is adjusted when persons present with prominent attention-deficits and concentration difficulties.

None of the psychologists are formally trained in the use of augmentative visual communication material such as the Picture Exchange Communication System, in part because of limited resources and local training opportunities. Pictures are used informally to augment verbal instructions, and recognized psychometric tests with pictures such as the Glasgow Depression and Anxiety Scales are employed. We also make use of a website that contains hundreds of pictures that could be downloaded without incurring costs [34].

Develop a shared understanding about the function of the behavior.

As part of the collaborative therapist-family relationship, the functional intent behind behavior that challenges is explicitly acknowledged, alongside the presence of possible antecedents and maintaining conditions that are in turn associated with internal behaviors or environmental and ecological variables.

Help family members and carers to provide the level of support they feel able to.

This recommendation raises important questions when considering its application in the local context: in as much as most parents of adults with ID and severe behavior that challenges have no recourse other than the possible institutionalization of their child through certification under the Mental Health Care Act, in a poorly-fit-for-purpose ID service facility in a Psychiatric hospital, by default most of these families are required to meet their children’s high behavioral support needs at home, often with little or no formal support.

In our experience, family members regularly describe perceptions of inadequacy, helplessness, and hopelessness in meeting the behavioral support needs that their family members require. Families may not have any choice other than trying to meet high behavioral support demands, regardless of the extent of their caregiving capacity and coping resources.

Take into account the severity of the person’s learning disability, their developmental stage, and any communication difficulties or physical or mental health problems.

The Diagnostic Criteria for Learning Disabilities are used to systematically assess behavior that challenges [20]. We do not have the capacity to individually assess each referral in terms of the person’s level of intellectual disability, and some of the persons referred to us have never been psychometrically assessed. At times, the severity of intellectual disability is therefore based on clinical observation in the absence of rigorous psychometric assessment and a more comprehensive and formalized analysis of adaptive abilities and support needs. This approach is in line with the definition of ID in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) [35], in which greater diagnostic value is placed on adaptive function than previously.

Aim to provide support and interventions:

In the least restrictive setting, such as the person’s home, or as close to their home as possible, and

In other places where the person regularly spends time (for example, school or residential care).

Aim to prevent, reduce or stop the development of future episodes of behavior that challenges.

Aim to improve quality of life.

Offer support and interventions respectfully.

Ensure that the focus is on improving the person’s support and increasing their skills rather than changing the person.

Ensure that they know who to contact if they are concerned about care or interventions, including the right to a second opinion.

The small number of psychologists has a limiting effect on their capacity to render services in the communities of service-users and their families. But as an alternative to home visits, for example, psychologists would arrange and attend person-centered meetings at vocational and residential services across the city on a regular basis. We also complete naturalistic observation and other forms of recording in the person’s vocational environment and conduct assessments such as the Functional Assessment Screening Test (FAST) with supervisors in the working environment. The FAST is relatively easy to administer and available on the internet without charge, which could potentially be used in scarce-resourced settings. Depending on the individual clinical needs of families and the person whose behavior is challenging, observations and the implementation of behavioral programs also frequently require home or workplace visits. The labor-intensive and time-consuming nature of such visits cast doubt whether such clinical practices will be sustainable in future because of an increased number of referrals.

We are striving to engage in clinical processes that aim at achieving the following:

The deceleration of unwanted behaviors and acceleration of target behaviors to avert, decrease or discontinue distressing forms of behavior that challenges. Such behaviors are conceptualized as being caused by the interaction between a person and other people in a dynamic environment; and helper attributions of internality are actively interrogated and discouraged in supervision.

Tangible gains in the person’s quality of life.

The focus is not on a skills deficit but rather on a behavioral support-needs base. Observations of inadequate medical or care support to the recipients of care often form the basis of referrals to medical professionals and social workers.

Because of a shortage of appropriately qualified health care professionals, it is most often not possible to refer families for a second opinion in the governmental health services. Referrals to private health care professionals for second opinions have been made in the past, provided that the family has the financial resources to access these services.

A formal carer’s assessment of their own needs (including their physical and mental health).

A comprehensive battery of tests is available to assess aspects of parenting that include caregiving stress, depressive symptoms, coping, relationships within family context, and quality of life. While our clinic has adequate funding to purchase tests and top-up answer sheets, some of the instruments are available in the public domain and could be downloaded from the internet without additional cost implications. We believe that it is possible to conduct a formal assessment, even in settings with poorer resources, provided that there is access to the internet to download recognized assessments scales. The available assessment instruments include the following:

The Beck Depression Inventory, Second Edition.

Family Community Participation Survey.

Family Quality of Life Survey.

The OK Health Check.

The Parental Locus of Control Test.

The Parenting Stress Index, Short Form.

The Ways of Coping Questionnaire.

The Parenting Sense of Competence Test.

Patient Health Questionnaire.

The Self-Reporting Questionnaire.

The Bene Anthony Family Relations Test.

The small clinical component of psychologists implies that assessments can only be considered when parents present with severe levels of distress, helplessness and depressive symptoms. In most instances, a degree of task-shifting is manageable: parents are referred to community clinics if there are reports of physical or mental health problems; a significant minority of parents are also able to afford private health care. In both instances, we will attempt to either contact the other health care professional or compile a short written report when referring family members for assessment in the community.

Short breaks and other respite care.

Until recently the Western Cape Government Department of Health allocated 20 placements for community-based adults with ID, often with behavior that challenges, in ID Hospitals. Members of the multidisciplinary team referred to these brief admissions into hospital as “respite beds”, and the rationale of the service was to offer family brief respite from caregiving. The service in one of the two settings has since been discontinued and less than 10 placements are now available.

Some of the psychologists facilitate family meetings that discuss ways of providing elderly parents with regular respite breaks, in this instance by older siblings or relatives who function as substitute caregivers in the home environment of their brother or sister.

Recognize the impact of living with or caring for a person with a learning disability and behavior that challenges.

In clinical supervision, we are encouraged to consider the role of stressful parental events juxtaposed with positive parental experiences. Case conceptualizations incorporate parental attributions, attachment theory, parental coping models and accumulative stress proliferation to unpack aspects of the child’s behavior that challenges. Such considerations are further contextualized by exploring parental roles within dynamic family systems and cultural embeddedness.

Explain how to access family advocacy.

We do not formally incorporate information-sharing initiatives aimed at fostering family advocacy or access to formal support structures to facilitate family advocacy. Substantial infringements on the rights of family members with ID and behavior that challenges require tangible interventions which may include recommendations that families should access appropriate advocacy and/or service resources that include the following local organizations. Except for the statutory Mental Health Review Board, all are non-profit organizations.

The Down Syndrome Association of the Western Cape.

Autism Western Cape.

Cape Mental Health Society.

The Down Syndrome Association of the Western Cape.

The Mental Health Review Board of the Western Cape.

The Western Cape Cerebral Palsy Association.

The Western Cape Forum for Persons with Intellectual Disability.

It is at times difficult to implement sustainable family advocacy interventions, in particular when the person with ID is denied access to educational, vocational and residential services because of their behavior that challenges. Most of these services are scarcely resourced and demand tends to far outweigh supply. Waiting lists, most often extending over one to three years, are the norm, and the majority of families that access our service have limited agency to mobilize and play an advocacy role on behalf of their family members with ID and behavior that challenges.

Consider family support and information groups if there is a risk of behavior that challenges, or it is emerging.

A recent initiative to start family support groups in the clinic yielded disappointing results. Only a small number of mothers participated, and attendance was inconsistent. Parents cited the unreliability of public transport with its relative cost implications as reasons why it was difficult to attend groups on a regular basis.

Consider formal support through disability-specific support groups for family members or carers and regular assessment of the extent and severity of the behavior that challenges.

Provide skills training and emotional support, or information about these, to help them take part in and support interventions for the person with a learning disability and behavior that challenges.

Please refer to previous two paragraphs.

Parental skills training is often employed after an individualized functional assessment found links between aspects of parenting and the child’s behavior that challenges. It employs the basic principles of positive behavior support and considers individual parental coping strategies and resources. We are also trying to obtain funding for parents with children with severe behavior that challenges to attend an accredited three-day course in the use of low arousal approaches in the management of behavioral difficulties.

Interventions in line with existing NICE Guidelines, or

Referral to a mental health professional who can provide interventions in line with existing NICE Guidelines.

Psychotherapy is seldom offered to parents of children with ID and behavior that challenges. A parent with mental health problems is referred to public community clinics in their neighborhood. Referrals to private psychiatrists, psychologists and social workers will be considered only if the cost implications are affordable to the family.

Cognitive-behavior therapy or supportive psychotherapy will be offered to parents with mental health concerns if referrals to community clinics or private health care professionals cannot be completed – in our experience community clinics differ significantly because the burden of care is not evenly distributed amongst community clinics; local organizational factors such as low staff morale could also protract the referral process.

The extent of the shortage of psychologists and psychiatrists in community health services implies that mental health interventions will mostly be conducted by nurses and medical general practitioners.