Positive Behaviour Support Planning

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Positive Behaviour Support Planning

Jan 25, 2024

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This article looks at the complexities of supporting challenging behaviours.

Each person living with Prader-Willi syndrome (PWS) is an individual. All people develop their own personalities, skill set and life path. Individuals may not experience all the behavioural characteristic outlined below.

Behavioural and emotional outbursts

People living with PWS have a set of behaviours which are so characteristic of the syndrome, they are known as a behavioural phenotype. Most are linked to the hypothalamic dysfunction and/or cognitive problems. However, these behavioural challenges vary considerably in mildness and severity from person to person, and over time and circumstances.

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Children and adults living with PWS are prone to emotional lability and outbursts. The reasons for an outburst are not always clear but may include hunger, tiredness, uncertainty, unexpected events, conflict, etc. Parent or support worker guidance can help to minimise these. In some instances, professional support from a Behaviour Support Practitioner may be required. See the PWSA UK website for a quick summary of typical behaviours and strategic responses: PWS behavioural phenotype.

Challenging behaviour and positive support

An overview of how a Behavioural Support Plan (BSP) can improve the quality of life is given by DPS. Reasons for having a BSP include:

  • BSPs are created to address challenging behaviours, which may sometimes be called ‘behaviours of concern’.
  • These behaviours may have the potential to cause harm to the person behaving in that way, for example scratching their own skin or hitting their head, or have the potential to cause harm to others, such as a tendency to be physical when stressed.
  • When a challenging behaviour arises, it can be difficult for others to know why a person is behaving in that way.
  • However, they do not have to be violent behaviours to be considered in a BSP. Non-violent examples include yelling or screaming, being withdrawn, not sleeping well, absconding or repeated refusal to do things.
  • BSP should encourage the use of positive behaviour support and acknowledge that challenging behaviour happens due to the person’s current and past experiences, the influence of other people in their lives, and their environment, community and cultural influences.
  • Positive behaviour support focuses on the reasons which have caused the behaviour rather than punishing the person and works to limit the causes of the behaviour in order to improve the person’s quality of life.
  • The professional will get to know the person who the plan is for, their situation, their behaviours and the reasons behind those behaviours – including if they have any health issues which are causing them pain or discomfort and can be treated or managed.
  • They will also find the person’s strengths and any skills that can be used in the plan.
  • Family members, parents, guardians, housemates and support workers should be consulted as well because it is important the professional understands the home environment so that the plan can be as successful as possible.

Examples of behaviour support

Each BSP must be individualised, and person centred. There are lots of different strategies that might be used in a BSP for lots of different aspects of a person’s life. For example:

  • A strategy that the person travels with two others while in a car – one support person to focus on driving and the other to be company for the person living with PWS so that they don’t feel stressed about the situation and can travel safely without taking their seatbelt off or getting out of the car in transit.
  • Making connections in the community through sport, recreation or social media can be used to build positive relationships and encourage positive behaviours around others.
  • A plan might include learning skills like waiting, turn-taking, anger management or self-regulation strategies.
  • If the person has an NDIS plan, they may have services funded to help them develop these skills or to purchase supports like social stories – these are guides for certain social situations showing positive behaviour reactions and scripts for how to respond to a situation.
  • Environmental support might include having organised schedules and structuring any activities, making the person feel more comfortable with a routine and encouraging positive behaviour.
  • A BSP can also involve services such as occupational therapy for advice on how to make a person’s environment comfortable, speech therapy to build communication skills, and other therapists to support positive behaviour.

BSP’s and Restrictive Practices in PWS

Some BSP’s may include restrictive practices. Most Australian States have rules and laws regarding human rights and freedoms. Nationally the government has ratified the United Nations Convention of the Rights of People with Disabilities (UN CRPD). Prader Willi Syndrome Australia (PWSA) fully supports the UN CRPD. PWSA also recognises the many challenges arising within our community when supporting individuals with complex needs. Sometimes ‘restrictive practices’ might be needed to protect the person or others from harm.

Restrictive practice rules

A Restrictive Practice is ‘any practice or intervention that has the effect of restricting the rights or freedom of movement of a person with disability’. (NDIS Act, 2013)

Restrictive practices can have a serious impact on the health and wellbeing of people with disability. Using restrictive practices can significantly limit a person’s human rights.

Australia has made a commitment to reduce and eliminate the use of restrictive practices for people with disability. This is part of our commitment under the UN Convention on the Rights of People with Disabilities (CRPD).

Therefore, adults living with PWS (whether living in the family home or not), need to have their freedoms under law must respected. These freedoms can only be removed or ‘restricted’ under certain, strictly monitored circumstances.

Rules apply to the use of regulated restrictive practices. These encompass:

  • Regulated restrictive practices can only be used if they are part of a positive behaviour support plan.
  • They can only be used “as a last resort in response to risk of harm to the person with disability or others, and after the provider has explored and applied evidenced-based, person-centred and proactive strategies”
  • When the positive behaviour support plan is monitored and reviewed.
  • The use of unauthorised and authorised restrictive practices must be reported to the NDIS Quality and Safeguards Commission.
  • Restrictive practices cannot be used by unregistered providers. For example, a medication prescribed for the primary purpose of controlling someone’s behaviour, a chemical restraint, cannot be given to a person with disability by an unregistered provider.
  • Get details about the Government’s Restrictive Practice Rules (2018) Legislation.

Legislative requirements

Each State and Territory have their own rules and legislation regarding restrictive practices. Guidance for people living in the ACT (Australian Capital Territory) can be found here.

Features of the ACT legislation are common to most States:

  • The Senior Practitioner holds an executive position and the legislative framework for the reduction and elimination of restrictive practices.
  • The Senior Practitioner has independent oversight of restrictive practices used by providers of education, education and care, care and protection of children, and disability services.
  • A restrictive practice is defined as a practice (2023) that is used to restrict the rights or freedom of movement of a person for the primary purpose of protecting the person or others from harm, and includes:
    • Chemical restraint.
    • Environmental restraint.
    • Mechanical restraint.
    • Physical restraint.
    • Seclusion; or
    • Verbal directions, or gestural conduct, of a coercive nature.
  • The role of the Senior Practitioner is to guide decision making and promote positive alternatives to restrictive practices that preserve a person’s rights and freedoms.
  • A provider must not use a restrictive practice on a person, other than in accordance with a registered Behaviour Support Plan.
  • A restrictive practice can only be used outside of a registered BSP when each of the following applies:
    • The provider or relevant person for the provider believes on reasonable grounds that it is necessary to use the restrictive practice to avoid imminent harm to the person or others.
    • The restrictive practice is the least restrictive of the person as is possible in the circumstances having regard to the kinds of restrictive practice that may be used, how it is applied, and how long it is applied for.
    • If practicable, the use of the restrictive practice is authorised by the person in charge of the provider.
  • The intent of the legislation is to ensure that restrictive practices are only used:
    • As a last resort, for the shortest possible time and only when necessary to prevent harm to the person or others; and
    • If it is the least restrictive way of ensuring the safety of the person or others.

Victorian requirements around restrictive practices are managed by the Office of the Senior Practitioner seen on the DFFH website.

Implications of restrictive practices legislation

While the legislation applies to people of all ages, the ramifications become more pertinent once individuals reach adulthood. Further complexities arise once the person moves out of their family home into supported accommodation. Support providers are required both by law, and under the National Disability Insurance Scheme (NDIS), to protect individual’s rights.

PWSA recognises that this system introduces an added layer of complexity for people living with PWS and their families when looking to move out of their family home. However, we fully support the process and safeguards that are built into the system to protecting human rights.

The NDIS Quality and Safeguards Commission regulates the use of behaviour support and restrictive practices to protect NDIS participants.

Examples of Restrictive Practices

Example of restrictive practices which may be necessary to protect the health and welfare of someone living with PWS and the welfare of those supporting them might include:

  • Chemical restraint, e.g., PRN medication.
  • Restricted Access, e.g., locked kitchens or only supervised community access.

Less likely to be needed are:

  • Mechanical restraint.
  • Physical restraint.

In all cases, a Behavioural Support Practitioner should be instructed to develop a Behaviour Support Plan (BSP) to describe the restrictive practice and explains why the restriction is necessary, and how it might be eased. This BSP would then be registered with the NDIS Quality and Safeguards Commission. The BSP is be reviewed each 12 months to determine if the restrictive practice could be eased or, where possible, removed.

Some adults have trialled living without any restrictive practices, but health decline occurs quickly and life expectancy is substantially reduced.  Many others may have a registered BSP with numerous restrictions.

Recognising restrictive practices is illustrated in the ‘Zero Tolerance guide, 2021’ on the National Disability Services website for service providers.

Food security and food barriers

Implementing a two-pronged food security plus food barrier approach is worth considering. One possible benefit is that, for adults living with PWS in supported accommodation in Australia, the ‘food security’ approach may in some instances not be viewed as a reportable restrictive practice. ‘Food barriers’ (locked cupboards/kitchen) are most likely a reportable restrictive practice, necessitating the development of a BSP for registration with the appropriate Government agency in your State and then the NDIS Quality and Safeguards Commission. More detail regarding food security can be found in the PWSA ‘Food security and food barriers’ article.

NDIS Requirements

  • The NDIS requires behaviour support practitioners who are developing BSP’s for NDIS Participants to be registered as Providers.
  • BSP’s which involve restrictive practices, are only to be used as a last resort, and must also be submitted to the NDIS Quality and Safeguards Commission (Commission) so that the practices can be reviewed.
  • Every time a regulated restrictive practice is used it must be reported by the person’s NDIS service providers to the Commission.
  • The practitioner would develop a BSP and upload it into the NDIS Commission Portal by either:
  • Details about the participant and regulated restrictive practices are entered into the NDIS Commission Portal.

Behaviour Support Practitioners can read more about submitting behaviour support plans and reports on the NDIS Commission website.

What might be included in a BSP?

BSPs may include:

  • Known triggers of the behaviour (food, noise, touch, language used, etc).
  • Situations that make the behaviour more likely or cause the behaviour to occur (hunger, tiredness, pain, frustration, etc).
  • Strategies to reduce or remove triggers.
  • Strategies to address situations that may trigger the behaviour.
  • Strategies to teach the person how to meet their needs without using the behaviour of concern.
  • How the behaviour is reinforced.
  • If the behaviour, or warning signs to the behaviour, occurs how people, in particular support workers and provider management should respond, without reinforcing the behaviour.
  • When the plan will be reviewed.
  • How the plan will be evaluated.

If the person has particularly challenging behaviour, it may be useful to conduct a functional behavioural assessment first.

Sharing the plan

Besides providing the BSP to the NDIS, it could also be shared with the following depending on their expected role in the implementation:

  • Services that provide supports to the person with PWS
  • The mainstream school/universities attended by the individual.
  • Family members or friends that provide informal support at home or in the community.
  • Community programs and centres
  • Respite services and supported accommodation providers.

How can a person with PWS get NDIS funding to implement BSP?

Participants may be eligible for NDIS funding in their Plan to secure the services of a behaviour support practitioner to write and implement a BSP. Further detail can be found in the PWSA article ‘NDIS planning for adults’.

Once there is funding in your Plan, PWSA recommends you seek a practitioner with ‘complex’ experience or prior knowledge of writing BSP’s for people living with PWS. You can see an example of a BSP service on the SAL Consulting website

Further resources for supporting challenging behaviour

For anyone, whether support workers, carers or families.

‘Understanding and supporting mental wellbeing’ on the PWSA website. [Link TBC]

Published research and International Prader Willi Syndrome Organisation resources:

Behaviour – communication and social skills (PDF)

Managing a Meltdown (IPWSO Famcare) (PDF)

Coping with Change (IPWSO Famcare) (PDF)

What exactly is confabulation? (IPWSO)

Confabulation (Story- telling) (IPWSO Famcare) (PDF)

Strength in Boundaries (IPWSO Famcare) (PDF)

Skin-picking in people with Prader-Willi syndrome (IPWSO Famcare) (PDF)

When Rituals become a Problem (IPWSO Famcare) (PDF)

I Want the Same (IPWSO Famcare) (PDF)

Using Positive Behaviour Support (PBS) to reduce the use of restrictive practices

in United Kingdom:

If you have any questions regarding behaviour that challenges, please contact us on 1800 pws aus (1800 797 287 free call within Australia) or social@pws.org.au

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We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

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