KBD (Restrictive Intervention)

CITATION	KBD (Restrictive Intervention) [2020] TASGAB 46
HEARING DATE(S):	11 September 2020
DATE OF ORDERS:	11 September 2020
DATE OF STATEMENT OF REASONS:	1 October 2020
BOARD:	Ms R Holder, (President) Mr C Lee, (Member) Dr M Fasnacht, (Member)
APPLICATION:	Application for Approval of a Restrictive Intervention
CATCHWORDS:	Prader Willi Syndrome – use of body suit – personal restrictive intervention – therapeutic purpose
LEGISLATION CITED:	Disability Services Act 2011 Part 6 Division 3, ss 4, 34, 42, 43; Guardianship and Administration Act 1995 s 74
PUBLICATION RESTRICTION:	This decision has been anonymised for the purposes of publication.

Statement of Reasons

Background

[The Provider] made an Application to the Guardianship and Administration Board (‘the Board’) for Approval of a Restrictive Intervention concerning KBD (‘the Application’). The restrictive intervention sought is a personal restrictive intervention requiring KBD to wear a body suit, both day and night.
[The Provider] (‘the Applicant’), is a disability service provider within the meaning of the Disability Services Act 2011 (‘the Act’).
KBD is a 32-year-old woman who resides in supported disability accommodation provided by [the Provider]. KBD shares her accommodation with one other female person. KBD has funded supports 1:1 except overnight where one worker is present at the house on a sleepover shift.
KBD is supported by Life Without Barriers (‘LWB’), a disability service provider for community access. LWB filed an Application for the Approval of a Restrictive Intervention (‘LWB Application’) being the wearing of a body suit by KBD. The LWB Application was heard by the Board at the same time as the Application filed by the Applicant. This Statement of Reasons is only in relation to the Application filed by the Applicant.
After proceeding to hearing the Board dismissed the Application. Dr Kristen Webb Foss, while not present at the hearing but as an employee of the Applicant has requested a Statement of Reasons, pursuant to section 74 of the Guardianship and Administration Act 1995.

Hearing

The Board heard and determined the Application on 11 September 2020.
In attendance at the hearing were:
a.Ms Allison Buchanan, Applicant from [the Provider].;
b.Ms Anne Taylor, from Life Without Barriers;
c.Mr Charley Hodgson, Senior Practitioner under the Act;
d.Ms Jocelyn Payne, from the Office of the Senior Practitioner, observing; and
e.Ms Di Pullen, Clinical Psychologist and author of the Behaviour Support Plan.
The Board had before it the following documents:
a.Application for Approval of a Restrictive Intervention filed by the Applicant dated 10 August 2020;
b.Application for Approval of a Restrictive Intervention filed by LWB dated 28 July 2020;
c.Healthcare Professional Report (‘HCPR’) of Ms Di Pullen dated 24 July 2020;
d.Two medical reports of Clinical Associate Professor Robyn Wallace dated 20 May 2020 and 1 July 2020 respectively;
e.Report of Assessment of Dr Angela Livingstone, consultant psychiatrist dated 26 of March 2020;
f.Occupational Therapy functional assessment report from Altius Group dated 13 December 2019;
g.Statement from the Senior Practitioner, Mr Charley Hodgson, dated 21 August 2020;
h.Behaviour Management Plan (also known as Behaviour Support Plan) from Ms Di Pullen psychologist dated 29 May 2020 (‘BSP’);
i.Summary of Behaviour Management Plan (‘BMP’) from Ms Di Pullen psychologist dated 17 August 2020; and
j.Publication titled ‘Prader Willi Syndrome Food Security Basic Concepts’ by Pittsburgh Partnership.

Legislation

Part 6 Division 3 of the Act provides for regulation of restrictive interventions by the Board.
Section 4 of the Act defines a restrictive intervention as meaning
... any action that is taken to restrict the rights or freedom of movement of a person with disability for the primary purpose of the behavioural control of the person but does not include such an action that is –
(a)     taken for therapeutic purposes; or
(b)     taken to enable the safe transportation of the person; or
(c)      authorised under any enactment relating to the provision of mental health services or to guardianship.
Therapeutic purposes is defined in the Act at section 4:
includes treating (by diagnosing, curing or relieving) a disease, disorder, ailment, defect or injury and facilitating such treatment, but does not include preventing or reducing the risk of ailment or injury.
Section 34 of the Act defines two types of restrictive interventions:
environmental restriction, in relation to a person with disability, means a restrictive intervention in relation to the person that consists of the modification of an object, or the environment of the person, so as to enable the behavioural control of the person but does not include a personal restriction;
personal restriction, in relation to a person with disability, means a restrictive intervention in relation to the person that consists wholly or partially of –
(a) physical contact with the person so as to enable the behavioural control of the person; or
(b) the taking of an action that restricts the liberty of movement of the person.
The power of the Board to make Orders in respect of restrictive interventions is set out in section 42 of the Act. Section 43 sets out what the Board must be satisfied of to proceed to approving a restrictive intervention.

Evidence and Findings

The Board has before it a HCPR from Ms Di Pullen which states that KBD has lifelong severe intellectual disability associated with Prader Willi Syndrome, and co-morbidly has Bipolar Disorder which has also been diagnosed as Affective Psychosis. This evidence was confirmed by Ms Pullen at hearing. Ms Pullen stated she has known KBD since 2007 but has worked with her and her support team more recently in her role as a behaviour support practitioner and psychologist. Ms Pullen has recently completed a full BSP in respect of KBD.
The Board also has a report from Dr Angela Livingstone that states KBD has Prader Willi syndrome, which is a genetic disorder (caused by a loss of function of specific genes on chromosome 15) associated with intellectual disability, hyperphagia and a range of medical issues in addition to the complications of overeating. She has Type 2 Diabetes, bilateral hip dysplasia, ostopaenia (low bone density), and a history of a right cataract and retinal detachment.
Ms Pullen states KBD has severe impairments in cognition and in expressive and receptive communication. She is not capable of a higher order thinking required to make decisions about her health or medical treatment. She is dependent on her carers for all activities of daily living.
The Board finds that KBD is a person with a disability and is incapable due to her disability of giving consent to any restrictive intervention that impacts on her freedom of movement.
The Application makes a request for the use of a personal restriction that is, KBD wearing two types of body suit, one with a snap crotch during the day and another (a shoulder-tied pyjama suit) overnight.
The Application states that KBD has the propensity to eat non-food items, in particular she will dig her anus to retrieve fecal matter for oral consumption. The Application provides that the purpose of a body suit to be worn by KBD is to slow down the acquirement of her fecal matter, by giving staff time to intervene and use diversion and re-direction.
The Board heard evidence that over a three month period January to early April 2020 and with KBD having 1:1 staff support there were 40 occasions of KBD eating fecal material at her home. This was when KBD was not wearing a body suit.
The Senior Practitioner gave evidence that KBD lived at her family home until she was 19 years of age. During this time the KBD ‘did not display any signs of faecal smearing, eating or rectal picking.’ The Senior Practitioner reports KBD moved to an Intensive Support Unit for 3 years, operated by the Applicant because of increasing severity of outburst behaviours ‘and it was here that reports of the faeces-related behaviour started.’ KBD moved into her present accommodation in 2010. A body suit was used at times over the years but was ceased in September 2019.
Ms Pullen gave evidence that when the wearing of the body suit was ceased in September 2019 KBD’s behaviours of concern increased, despite the support and supervision by staff. KBD was said to engage in regular self-injurious behaviour that is hitting her face, injuring her eye (detaching her retina) and causing nose bleeding by sticking her finger up her nose and pulling out her body hair.
The Applicant stated that when KBD is not wearing a body suit she requires a high level of staff supervision. It was agreed by all those present at hearing that this staff supervision is quite intrusive, as KBD likes to retreat and have time by herself and will automatically seek body parts to self soothe.
The Senior Practitioner and all others present at hearing supported KBD wearing a body suit. The Senior Practitioner in his Statement said:
While the BSP is being implemented, the body suit is the most appropriate option to enable KBD to enjoy a good quality of life. The body suits…have buttons she can open …therefore still allow her access to her faeces but have the effect of slowing her down giving time for staff to intervene. The suit is therefore the least restrictive option currently available…
The question for the Board is whether the body suit worn by KBD is for therapeutic purposes.
Ms Pullen gave evidence that PWS symptoms are believed to be caused, in part, by a defect in the hypothalamus. For a person with PWS there is a constant pre-occupation with food accompanied by an unrelenting, overwhelming, overriding physiological drive to eat. Normal satiety that is the feeling of fullness after eating does not exist. Ms Pullen stated the person’s feeling of insatiety leads to indiscriminate eating including non-food items (pica), eating animal and human faeces, hoarding activities and a compulsive rushing behaviour to get other people’s food. Ms Pullen gave evidence that this neurologically driven food compulsion leading to insatiable appetite essentially controls the person’s functions and behaviours.
Ms Pullen opined that KBD seeking out her faeces and eating it, is a food-seeking behaviour directly resulting from her having PWS. Ms Pullen explained that food security is very important to a person diagnosed with PWS. A person with PWS must know what they will be fed, when they will be fed and that there is no hope they will be able to get food at any other time. Ms Pullen stated best practice for people with PWS is to have very structured and consistent provision of food and set mealtimes.
Ms Pullen opined that for KBD food insecurity leads to significant stress and heightened anxiety which can potentially exacerbate her other mental health conditions. Ms Pullen observed there were inconsistent practices and food security issues across KBD’s day service and accommodation service providers, particularly when meals were served and how food was provided to KBD. Given Ms Pullen’s evidence, it is open for the Board to find and the Board does find, that inconsistencies in food practices across her disability accommodation and disability community support providers would more likely than not result in anxiety and anxiety driven behaviours for KBD.
Ms Pullen stated that faeces is food for KBD. As such, ready access to faeces presents a form of food insecurity for KBD. Unrestricted access to food, or any type of uncertainty about food, leads to food insecurity which is stressful and distressing for KBD. Ms Pullen submitted that the wearing of the bodysuit reduces the stress of seeking food and in that respect relieves PWS. Further Ms Pullen stated PWS is a ‘disorder’ as it is a dysfunction of the hypothalamus and regulatory functions. The Senior Practitioner agreed with these submissions.
The Board questioned Ms Pullen as to whether KBD’s faeces-seeking behaviour could be due to seeking sensory stimuli. Associate Professor Wallace in her report opines that the faeces-related behaviour is not related to KBD’s PWS but in her opinion is more likely associated with seeking sensory stimuli, particularly given she has impaired sight. Ms Pullen responded by saying she believed KBD seeking her faeces as a sensory stimuli could be seen as a possible secondary function, but not the primary function. Ms Pullen states that the data she has seen indicates that KBD’s first priority once she has accessed her feaces is to put it in her mouth, chew and swallow it. Only then is she interested in any residue on her hand which she will roll it around her fingertips and play with, which may be an enjoyable sensory function for KBD. The Senior Practitioner expressed support for this view. The Board accepts this evidence of Ms Pullen.
The Senior Practitioner stated that the wearing of a body suit restricts KBD’s liberty of movement. The Senior Practitioner agreed that PWS can be classified as a disease or disorder. He opined that the wearing of a body suit to ensure food security ‘relieves’ food stress. The Senior Practitioner stated relieving food stress which he described as ‘the fundamental characteristic of PWS’ by the wearing of the bodysuit should be considered therapeutic, and therefore outside of the definition of restrictive intervention in the Act. The Senior Practitioner referred to the BSP, which contains a considered plan to reduce the use of the bodysuit, once appropriate staff education and training has occurred.
The word ‘disorder’ is not defined in the Act. The Macquarie Dictionary (2016) defines ‘disorder’ in the medical context as:
A derangement of physical or mental health or functions.
To disturb the normal physical or mental health of; derange.
The word ‘relieve’ is not defined in the Act. The Macquarie Dictionary (2016) defines ‘relieve’ in the medical context as:
To ease or alleviate (pain distress, anxiety, need etc).
To free from anxiety, fear, pain etc.
Applying this wording, the Board finds that Prader Willi Syndrome is a genetic disorder as it disturbs KBD’s physical and mental health caused by a loss of function of specific genes on chromosome 15 and results in a driven preoccupation to seek food to overcome insatiety. The Board accepts Ms Pullen’s evidence that unscheduled food causes stress for KBD. Therefore unrestricted access to her anus and the opportunity to consume her faeces results in ‘food stress.’ The Board accepts the evidence of Ms Pullen and the Senior Practitioner that the wearing of the bodysuit ‘eases or alleviates’ stress as it means that KBD cannot obtain food and therefore removes the uncertainty of getting any unscheduled food.
The Board finds on the evidence, the wearing of a body suit relieves Prader Willi Syndrome. Therefore the Board finds KBD’s wearing of a body suit is for a therapeutic purpose and is expressly excluded from being classified as a restrictive intervention under the Act.
The Board Orders that the Application for Approval of a Restrictive Intervention filed by [the Provider] is dismissed.

[2020] TASGAB 46

11 September 2020