PNFK and National Disability Insurance Agency
[2018] AATA 692
•28 March 2018
PNFK and National Disability Insurance Agency [2018] AATA 692 (28 March 2018)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2017/4514
Re:PNFK
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Professor R McCallum AO, Member
Date:28 March 2018
Place:Sydney
The reviewable decision dated 27 June 2017 is varied as follows:
1.PNFK be given 100 hours of support coordination;
2.On standard work weeks from Monday to Friday, PNFK be given 9 hours of care from 8:30 am to 5:30 pm, and 3 hours of care to be used flexibly either before 8:30 am or after 5:30 pm;
3.On standard weekends, 4 hours of care for PNFK on both days, to be used flexibly;
4.On two weekends, PNFK be given 24 hours care, totalling 48 hours;
5.On two long weekends, 24 hours of paid care for PNFK totalling 72 hours;
6.On two weeks of the four weeks of the annual leave of PNFK’s Father and Mother, 24 hours of care for PNFK per day being 168 hours per week, totalling 336 hours for the two weeks;
7.For the remaining two weeks of annual leave, 9 hours care of PNFK on week days, that is from Mondays to Fridays, and four hours of care on each Saturday and Sunday;
8.For the remaining public holidays, 9 hours of care for PNFK at the public holiday rate; and
9.For the two public holidays which fall on weekends, 4 hours of care for PNFK at the public holiday rate.
......................[sgd].................................................
Professor R McCallum AO, Member
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – applicant a child with multiple impairments – severe hypoxic ischaemic encephalopathy – profound global developmental delay with cerebral palsy – seizures - cerebral irritability – bulbar palsy – feed intolerance and poor weight gain – mild to moderate hearing impairment - cortical visual impairment – support coordination – core supports – whether supports reasonable and necessary – hours of care for applicant – respite – decision under review varied
LEGISLATION
National Disability Insurance Scheme Act 2013, ss 3, 4, 33, 34, 100, 103
National Disability Insurance Scheme (Supports for Participants) Rules 2013, r 3.5, sch 1
CASES
LNMT and National Disability Insurance Agency [2018] AATA 431
SECONDARY MATERIALS
Convention on the Rights of the Child, Art 3, 23
Convention on the Rights of Persons with Disabilities, Art 7
REASONS FOR DECISION
Professor R McCallum AO, Member
28 March 2018
BACKGROUND
The applicant is a two and a half year old girl. To protect her privacy, I shall refer to her as PNFK.
At birth, PNFK suffered severe hypoxic ischaemic encephalopathy, and she was immediately admitted to the Neonatal Intensive Care Unit at the hospital.
While her parents were advised that her chances of survival were not good, PNFK is a real fighter and has pulled through every setback.
PNFK suffers from a number of impairments including profound global developmental delay with cerebral palsy; seizures; cerebral irritability; bulbar palsy; feed intolerance and poor weight gain; mild to moderate hearing impairment; and cortical visual impairment.
PNFK AND THE NDIS
PNFK became a participant in the National Disability Insurance Scheme (NDIS) on 19 February 2016. The NDIS was established by the National Disability Insurance Scheme Act 2013 (Cth) (the NDIS Act), and is administered by the National Disability Insurance Agency (NDIA).
PNFK’s first participant plan commenced on 6 April 2016.
PNFK’s second participant plan began on 9 March 2017, and it was to be reviewed by 9 March 2018. The relevant portions of this plan are as follows:
Support Area: Support coordination
Budget: $4,613.50
Details: The participant has been streamed as Intensive level participant. Based on the complexity and capacity factors within the NDIA Coordination of Supports Framework it is reasonable and necessary to fund 50 hours of Support Coordination to assist plan implementation. This funded support will assist to achieve the goals in this plan, complement and build capacity of the participant and/or their informal supports.
…
Support Area: Core supports
Budget: $69,986.00
Details: The participant stated that their current products required and this has also been included in this plan to advise on the most appropriate products. This funding represents value for money due to the benefits achieved.
…
Core supports are to assist with undertaking activities of daily living. This typically includes self-care and community participation. The supports are flexible and allow you to allocate your funding to purchase services that will assist you to meet your plan goals.
This plan, that is the second participation plan, contained less funding for core supports than did the first participation plan.
At the hearing, counsel for the Respondent explained that as PNFK’s family had not used up all of the core support funding in the first participation plan, the second participation plan took the moneys which had been used in the first plan and determined a pro-rata amount for the twelve months of the second participation plan. Counsel said that at the week day rate, the second participation plan enabled the family to use approximately 1,515 hours for PNFK’s care. In other words, the second participation plan gave the family approximately 29 hours of care each week.
PNFK Seeks Internal Review
Unsurprisingly, PNFK’s parents sought an internal review of the second participation plan.
On 27 June 2017, a delegate of the CEO of the NDIA after reviewing the plan, decided not to vary it. In other words, the second participation plan remained unaltered.
PNFK Seeks Review by the AAT
PNFK’s parents applied to the NDIS Division of the Administrative Appeals Tribunal for review of the 27 June 2017 reviewable decision.
Under section 103 of the NDIS Act, the Tribunal has jurisdiction to review the decision of 27 June 2017 as it was made pursuant to section 100(6)(a) of the NDIS Act.
Counsel for the Respondent did not seek to argue that the Tribunal lacked jurisdiction to hear this matter.
THE RELEVANT LEGISLATION
Section 33 of the NDIS Act sets out the content of participant plans as follows:
Matters that must be included in a participant’s plan
(1)A participant’s plan must include a statement (the participant’s statement of goals and aspirations) prepared by the participant that specifies:
(a) the goals, objectives and aspirations of the participant; and
(b)the environmental and personal context of the participant’s living, including the participant’s:
(i) living arrangements; and
(ii)informal community supports and other community supports; and
(iii) social and economic participation.
(2)A participant’s plan must include a statement (the statement of participant supports), prepared with the participant and approved by the CEO, that specifies:
(a)the general supports (if any) that will be provided to, or in relation to, the participant; and
(b)the reasonable and necessary supports (if any) that will be funded under the National Disability Insurance Scheme; and
(c)the date by which, or the circumstances in which, the Agency must review the plan under Division 4; and
(d)the management of the funding for supports under the plan (see also Division 3); and
(e) the management of other aspects of the plan.
(original emphasis)
By her parents, PNFK asserts that an increase in her hours of care is a necessary and reasonable support which should be funded by the NDIA pursuant to subsection 33(2)(b) of the NDIS Act.
Section 34(1) of the NDIS Act sets out the criteria for the funding of necessary and reasonable supports as follows:
Reasonable and necessary supports
(1)For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
(a)the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
(b)the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
(c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
(f)the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i) as part of a universal service obligation; or
(ii)in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
Of course, subsection 34(1) is only one provision in a detailed statute governing the NDIS. This provision must be interpreted having regard to the entire statute and subsection 34(1) must be read in conformity with the purposes and objects of the Act. The Parliament of Australia has expressly provided objects and general principles in the NDIS Act to give guidance on the interpretation of the statute and these apply to the interpretation of subsection 34(1).
It is not necessary to set out the objects and principles in their entirety, but for the purposes of this decision I reproduce the following objects and principles.
3 Objects of Act
(1) The objects of this Act are to:
(a)in conjunction with other laws, give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities done at New York on 13 December 2006 ([2008] ATS 12); and
(b)provide for the National Disability Insurance Scheme in Australia; and
(c)support the independence and social and economic participation of people with disability; and
(d)provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch; and
(e)enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports; and
…
(i)in conjunction with other laws, give effect to certain obligations that Australia has as a party to:
(i) the International Covenant on Civil and Political Rights done at New York on 16 December 1966 ([1980] ATS 23); and
(ii) the International Covenant on Economic, Social and Cultural Rights done at New York on 16 December 1966 ([1976] ATS 5); and
(iii) the Convention on the Rights of the Child done at New York on 20 November 1989 ([1991] ATS 4); and
(iv) the Convention on the Elimination of All Forms of Discrimination Against Women done at New York on 18 December 1979 ([1983] ATS 9); and
(v) the International Convention on the Elimination of All Forms of Racial Discrimination done at New York on 21 December 1965 ([1975] ATS 40).
…
(3) In giving effect to the objects of the Act, regard is to be had to:
…
(b)the need to ensure the financial sustainability of the National Disability Insurance Scheme;
…
4 General principles guiding actions under this Act
…
(3)People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.
…
(5)People with disability should be supported to receive reasonable and necessary supports, including early intervention supports.
…
(11) Reasonable and necessary supports for people with disability should:
(a)support people with disability to pursue their goals and maximise their independence; and
(b)support people with disability to live independently and to be included in the community as fully participating citizens; and
(c)develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment.
(12)The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected.
…
(17)It is the intention of the Parliament that the Ministerial Council, the Minister, the Board, the CEO and any other person or body is to perform functions and exercise powers under this Act in accordance with these principles, having regard to:
(a)the progressive implementation of the National Disability Insurance Scheme; and
(b)the need to ensure the financial sustainability of the National Disability Insurance Scheme.
As has been shown above, section 3 of the NDIS Act sets forth the objects of the statute. Two United Nations human rights conventions are noted in this provision. The United Nations Convention on the Rights of Persons with Disabilities is mentioned in section 3(1)(a), while the United Nations Convention on the Rights of the Child is mentioned in section 3(1)(i)(iii) of the NDIS Act.
In interpreting section 34(1) of the NDIS Act, I shall therefore also be guided by these conventions. In particular, I note Article 7 of the United Nations Convention on the Rights of Persons with Disabilities which provides in part as follows:
Article 7 – Children with disabilities
1States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.
2In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.
…
I also note Articles 3 and 23 of the United Nations Convention on the Rights of the Child. Article 3 provides as follows:
Article 3
1In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.
2States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.
3States Parties shall ensure that the institutions, services and facilities responsible for the care or protection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervision.
Article 23 reads in part as follows:
Article 23
1States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.
2States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child's condition and to the circumstances of the parents or others caring for the child.
3Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development.
…
Importantly, the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (the Support Rules) address the assessment and determination of “reasonable and necessary supports” that will be funded by the NDIA. By virtue of section 209 of the NDIS Act, the Support Rules form part of the legislation.
THE HEARING
The hearing took place on Tuesday 27 February 2018 and Friday 2 March 2018. In other words, this matter took two full days.
PNFK’s parents attended the hearing and they both gave evidence by affirmation. The evidence which they gave about the care and needs of PNFK was at times emotional and they very creditably explained the daily life of the family. I found them to be honest and open, and they did their very best to assist the Tribunal.
There was no dispute between the parties over the facts in this matter. PNFK’s parents were asked the same or similar questions concerning PNFK, their other three children aged 15, 13 and 9, and their paid work and their lives.
In the summary of evidence which follows, I shall do away with repetitions.
The Evidence of PNFK’s Father
PNFK’s Father was the first witness to give evidence. He affirmed his written statement dated 23 January 2018, portion of which is as follows:
[PNFK) suffers from numerous ailments; spastic quadriplegia, no co-ordinated swallow, cannot roll over, can’t sit up, can’t walk or talk, can't feed by mouth, can’t coordinate her eye movement, can’t hold up her head with her neck, no trunk strength, high-tone limbs, little communication beyond crying and groaning.
Despite this, she is a survivor and although constantly knocked down, she fights on. She is constantly afflicted by ailments, colds, flus, high temperatures and other worse things. She consistently vomits, cries in pain, has massive oral and nasal secretions, chokes on her own saliva. And yet she persists. She is quite amazing really.
She suffers enormously if she does not have one-on-one care and support, and interaction. She has massive separation anxiety. Because her eyesight and hearing are extremely poor, physical separation can mean less than one metre and she gets very upset. She needs massaging, exercising, moving, rolling. Feeding is via a nasogastric tube by a machine. [PNFK] will never taste or enjoy food, or water.
[PNFK] requires constant one-on-one care. This includes physical interaction, talking to, singing to, cleaning, feeding, moving, rolling, massaging, bathing, dressing, nappy-changing, transporting, medicating, lifting. She can't be left alone. Being alone leads to distress, crying, excessive secretions, vomiting and choking. Being left alone for tens of minutes, or even just a few minutes, quickly becomes life-threatening for [PNFK]. [Footnotes omitted].
In his evidence, PNFK’s Father explained that PNFK suffered a severe asphyxiation in the birth canal. She has severe brain damage. She has severe cerebral palsy. She has profound global development delay, seizures and cerebral irritability. She is unable to suck. She has feed intolerance and is now fed via a nasogastric tube by a machine.
She has severe vomiting. She also has moderate hearing impairments, but there has been a slight improvement over time. She has visual impairments which have improved over time, but less than her hearing. She possibly recognises faces.
In a practical sense, she has very poor tone in her trunk. She cannot hold her head upright. She has high tone in her arms and her legs. She cannot grip or hold at all. Her fists are permanently clenched.
He explained that PNFK’s needs are profound and obviously greatly differ from the needs of the older children when they were toddlers.
PNFK came home to her parents at about two weeks of age. He said that he was told that her likely survival was about one per cent. She is now about two and a half years old. He said that they are being told that her survivability is rather good. She fights off every ailment that comes her way.
He said that there have been developments over time, hearing and eye sight, but are slight. He says that the prognosis of movement, swallowing, talking is extremely poor.
PNFK’s Father discussed the family’s relationship with PNFK’s first carer (Ms Y) and how it started as a friendship before PNFK’s birth. He gave evidence about how Ms Y has been involved in their lives and assisted them with PNFK.
When the family first received funding from the NDIA, they sought out Ms Y to provide care for PNFK because of her previous roles and her experience with her own son with disabilities.
He gave evidence on the value of having a carer and how it impacted positively on the family so that they can spend time together and time resting.
Ms Y told the family that she wasn’t going to be able to care for PNFK indefinitely. She ceased her care in about November or December 2017. She gave them 2 months’ notice.
PNFK’s Father said that practically, there is less time for their other children. Their days are overwhelmingly dictated by what PNFK’s condition requires.
He explained that the family used to holiday quite frequently, for example, they holidayed in a caravan for a few weeks at a time, and they also used to stay in holiday rental accommodation.
However, the family cannot do that as frequently, unless there is respite care available. This is because it is difficult to take PNFK out of her familiar surroundings.
PNFK’s Father recounted how he has been struggling with the challenges of caring for PNFK, physically, emotionally and mentally and how it has impacted on his work and relationships.
He has very little sleep, and the sleep he has is broken and he still has to go to work.
He has no one other than his wife to confide in and feels like he can’t burden her further.
He recounted that he had spoken with the therapist who was provided through his employer and that this was of some help.
He self-diagnosed that he had severe depression.
PNFK’s Father explained that he and his wife struggled with the second participant plan with reduced supports.
They contacted the following organisations:
·the Newcastle District Nursing Service (NDNS); and
·ADJ Businesses; and
·The Commonwealth Emergency Respite Service.
When Ms Y left, the Commonwealth Respite Service provided two months of casual care for PNFK, and at least some of this care was used so that the other members of the family could go on outings etc.
Currently, carers from the NDNS care for PNFK. The arrangements are as follows. NDNS employees care from Mondays to Thursdays from 8:30 am to 5:30 pm. Care is also given on every second Saturday from approximately 9:00 am to 5:30 pm.
PNFK’s Father described a typical family day as follows.
PNFK wakes typically 2 to 4 times a night. In recent months, she has not slept until mid-morning. She usually wakes up properly around 6-7am coughing and making noises. When they get her up they put her in her chair and when the carer arrives, the carer will usually feed and bathe her. If she is messy when she wakes up, then her parents will bathe her. The parents give PNFK her medication at about 8:00 am, and they prepare her 2:00 pm medication and any other medications. Of course, PNFK’s feeding equipment needs to be cleaned.
As well as looking after PNFK in the morning, the parents are required to assist their three other children with breakfast, teeth cleaning, making school lunches, packing school bags and getting the two older children onto their school buses.
PNFK’s Father said that either he or his wife has to be at home at 5:30 pm when the carer leaves. One of them looks after PNFK, while the other helps the other children and prepares dinner. They try and get PNFK to bed at about 8:30 pm or 9:00 pm, but that it usually takes some time to settle her.
PNFK’s Father said that if they are given extra hours, they can spend more time with their other children. He loves PNFK, and he and his wife wish to care for her in their home, so long as this is possible.
After the complications of PNFK’s birth, they did not expect her to survive for a long time. PNFK’s Father said that the hospital told him and his wife that she may die during the Winter after her birth. However, by November 2016 they realised that she would survive and they began utilising the moneys in her first participant plan.
They have utilised the services of Bear Cottage. The family stayed there on two occasions. On the third occasion the parents left PNFK there for four nights and they took the other three children away for some break time.
A pamphlet about Bear Cottage titled “Living and Remembering Life” is before the Tribunal. The pamphlet reads in part as follows:
We understand how difficult and devastating it is for a family to find out their child has a life-limiting condition and the reality that diagnosis brings. Our goal is to support families through every stage of their child’s condition as it progresses.
What’s most important at Bear Cottage is that every child and family enjoys the time they have together to the fullest, creating precious and lasting memories to be treasured.
To help families through this challenging time we can:
·Provide temporary respite care in the earlier phases of an illness to give families a much needed break.
·Develop rapport and provide support for families as the child’s condition progresses.
·Provide end-of-life care according to each family’s needs, and in keeping with each family’s religious and cultural beliefs.
Bear Cottage is described as a children’s hospice and it can take from six to eight children at a time. A child can stay at Bear Cottage for up to four weeks of respite care per year, however, this is dependent on availability.
Finally, PNFK’s Father described his work. He is in a senior position and his work varies from about 38 to 50 hours a week, averaging about 40 hours per week.
The Evidence of PNFK’s Doctor
PNFK’s doctor (‘Dr X’) was the second witness to give evidence, and she did so by affirmation over the telephone. I found that she did her very best to assist the Tribunal.
Dr X explained that she is a paediatric palliative care physician employed at a hospital.
Dr X was taken to two letters. The first was a referral letter dated 7 October 2015, and the second was a report in a letter to Legal Aid dated 17 January 2018. These two letters are before the Tribunal. Dr X confirmed that these letters correctly set forth her medical opinion with respect to PNFK.
The report contained in the letter dated 17 January 2018 reads in part as follows:
As requested, I am providing my written medical report in relation to the care needs of [PNFK]. I have based this report on my personal knowledge of [her] case. My most recent assessment of [PNFK] was on 16/1/18 and prior to this on 6/9/17.
I am a paediatric palliative care physician employed at [a hospital]…The Paediatric Palliative Care Service accepts referrals of patients with life limiting or life shortening disease up to the age of 18. A large percentage of our patients have chronic, complex care needs and are not imminently dying.
[PNFK] was referred to the Paediatric Palliative Care Service when she was 6 days old…. At that stage she had a diagnosis of severe hypoxic ischaemic encephalopathy resulting in significant brain injury including neonatal seizures. [She] had no cough follow or gag reflexes and it was thought that she had a very poor prognosis. After extensive discussions and consultations over the subsequent days, a decision was made by [PNFK’s] parents together with the treating teams that [her] care would involve a focus on [her] comfort. Feeding/hydration was to be provided via a naso-gastric tube at a quantity that [PNFK] could tolerate without distress. Extensive discharge planning was undertaken and [she] was discharged home on day 14 of life with support and follow up from the Paediatric Palliative Care Service. We have seen her at least 4-6 monthly since then.
[PNFK] has now survived to age 2 years and 5 months. She has not required any hospitalisations for illnesses and has been able to deal with multiple viral illnesses very well. The issues that [she] has had medically have been in relation to feed intolerance and severe irritability. She has had one admission for assessment of these. Over time it has become clear that it is unlikely that [she] will gain any significant developmental skills which will allow her to care for herself in any way. She therefore falls into the category of a child with severe cerebral palsy with chronic complex disability and care needs and complete dependency on her carers. In relation to her prognosis, at this stage there is no indication that [PNFK] is likely to die in the short to medium term. In fact, she appears to now be thriving.
[PNFK’s] care needs are significantly greater than a normal child of her age or even of a newborn infant. In particular the following points are important:
1She is unable to take any oral nutrition or fluids and is fully dependant on nasogastric tube feeding for survival.
2She requires several medications to control her symptoms and these need to be provided by her nasogastric tube. The doses that [she] needs are individualised and these medications need to be prepared at the time they are scheduled. This requires a degree of nursing expertise.
3[PNFK] vomits frequently and is unable to clear the vomit from her mouth – this has to be done manually. She also has profuse nasal and oral secretions which she is unable to clear on her own. She regularly chokes on both vomit and her own secretions.
4[PNFK’s] apparent source of happiness is being touched and repositioned. The reason she requires constant touch and stimulation is the cerebral irritability associated with her brain damage. Without the stimulation she becomes extremely distressed and when she becomes distressed she creates more secretions which then causes issues with choking and vomiting.
5[PNFK] is unable to effectively move her limbs or her trunk so she needs very frequent repositioning especially when she is awake.
6[PNFK] appears to be in the process of re-developing seizures and this is under investigation at present. It is possible that her seizure disorder will become more evident in the coming year or so. Skill in management of seizures would be required by anyone providing care to [PNFK].
7During the daytime, [she] receives her nutrition via a pump machine. The pump feeds need to be suspended during the day to give boluses of water which is required to maintain her hydration. Provision of these water boluses via the naso-gastric tube is a nursing duty.
8At times, particularly during wintertime, [PNFK] requires nasopharyngeal suctioning via a suction machine to prevent or treat severe choking episodes.
9[PNFK] is prescribed specialist physiotherapy exercises to be done 3-4 times per day for 20 minutes at a time. These exercises are to prevent contractures and fixed deformities in her limbs.
Overall, my assessment is that [she] is very likely to have a similar level of chronic and complex disability to her current, disability for years to come. As she grows, her care will become more demanding. Already much of the care required during daytime hours is at an endorsed enrolled nurse level or higher. I am strongly of the opinion that her care requirements cannot be met by a non-nursing trained child care worker.
Dr X said that she did not think PNFK will live to be an old person, but based on her history she is of the opinion that she will live for a number of years, unless another complication arises.
Dr X said that PNFK’s cerebral irritability is significantly worse with PNFK than in any other child she has seen.
Dr X said that people with PNFK’s condition often develop secondary complications such as scoliosis and dislocation of the hips which may require surgery. There can be chronic chest infections, and her seizure disorder can worsen. Her care will also become more challenging as she grows.
Dr X said that if PNFK was in hospital, then the administration of her medications would be a nursing duty.
Dr X is not sure about the skills of the disability support worker. In her opinion, the care associated with maintaining the tube and feeding would be at the disability worker level, and the physical touch aspect could be done really by anyone.
Dr X said that PNFK is at high risk of having life threatening events occur such as choking and seizures so she would need a carer prepared for that. Dr X said that the demands in caring for PNFK are enormous and impact on every domain of the parents’ lives.
There are the physical demands. There is sleep deprivation because of the vigilance required to deal with complications that can arise at any time. Dr X said that these demands can cause strain in the relationship between parents. She is aware that some family breakdowns occur.
Dr X said that PNFK survived when no one expected her to, so they have all had to re-calibrate how they should care for her. Dr X is impressed by the devotion to PNFK by her parents and noted their unwavering love and attentiveness to PNFK’s needs which she doesn’t always observe in parents.
The Evidence of PNFK’s First Carer
PNFK’s first carer, Ms Y, was the third witness to give evidence, and she did so in person by affirmation. She did her best to assist the Tribunal.
Ms Y recounted how she had met PNFK’s family, that she had a son with disabilities and how she began caring for PNFK.
Ms Y was shown her signed statement dated 13 February 2018 and she confirmed that it is a correct statement. This statement reads in part as follows:
… I began caring for [PNFK] on a more regular period. Initially for a day and then for a couple of days per week. Once [PNFK’s] NDIS application came through I became her carer on a more regular basis.
[She] is a gorgeous little girl who requires the highest amount of care. Her needs are well above those of my son. She actually NEEDS to be able to see and touch you at all times.
[PNFK] will become distressed to the point of vomiting which then leads to choking if you are away for more than a couple of minutes at times. I believe this is because of her disabilities and we are her security in life.
With regards to preparing [her] feeds and administering them to her this felt as though it was constant. You would at times just finish a feed and thirty minutes later need to be getting the next feed ready to go. If [she] was unwell just trying to give her a 60ml feed could take up to an hour or at times more.
[PNFK] relies on her carer for ALL of her needs to be met. She has constant secretions which require you to assist her to get them from her mouth to assist with her breathing.
[She] loves to be held and some days as her carer this is all you can do to keep her calm and happy. [She] began having seizures that were visible to me. These could at times make her very distressed and unsettled.
Caring for [PNFK] is rewarding as her smile brightens your day. She is a loving little girl that responds to being loved and nurtured. Caring for [PNFK] also requires the carer to have a whole lot of good mental, physical and emotional health.
Listening to a crying baby is draining on most of us, you then add the complex needs of [PNFK] and the inability to comfort her at times and this becomes quite draining.
Unfortunately after two years of caring for [PNFK] I became burnt out. It has a huge impact on your ability to maintain your own emotional and mental health to function normally within your own family. It is my opinion that [PNFK] requires a team of carers. Her needs are around the clock and they are extremely high.
The Evidence of PNFK’s Mother
PNFK’s Mother was the final witness, and she gave evidence by affirmation. She did her very best to assist the Tribunal.
PNFK’s Mother explained that she is a principal ecologist and that she is employed by the same firm where her husband is also employed. She recounted that her role is to produce reports and to undertake field work to produce data.
At present she is employed for 18.75 hours a week, but she often works for more than these hours. Her position is a permanent part-time one.
PNFK’s Mother said that before her eldest child was born, she was a consultant. After the birth, she worked on consultancies from 10 to 18.5 hours a week. Later, she took up her present employment. She said in evidence that before PNFK’s birth she often worked at about 80% of a full-time position. Since the birth, she has had to reduce her hours to care for PNFK.
PNFK’s Mother described a typical day in the life of the family, and this evidence was the same as that given by PNFK’s Father. She did add that she doesn’t leave for work until around 9:00 am. PNFK’s Mother said that she often arrives home later than her husband.
PNFK’s Mother discussed their holiday when they left PNFK at Bear Cottage for four days. Bear Cottage and its staff undertake magnificent work. Of course, the care needs of PNFK are complex and demanding. PNFK is also more comfortable in her own home. On several occasions the staff at Bear Cottage called the parents to discuss PNFK’s medications. PNFK’s Mother became distressed when recounting their time away from PNFK.
Finally, PNFK’s Mother said that she wishes to undertake full-time work. She is concerned that she may lose her job because she cannot currently fulfil all the demands of her job.
THE SECOND PARTICIPATION PLAN
It will be recalled that PNFK’s second participation plan was to end on 9 March 2018. The parties raised this issue at the hearing. They were concerned that if the second participation plan expired before my decision in this matter was handed down, the Tribunal would lose the jurisdictional basis for the decision.
The parties agreed upon an order, which I made pursuant to section 26(1)(b) of the Administrative Appeals Tribunal Act 1975 (Cth) on 5 March 2018. Omitting formal parts, the order reads as follows:
To allow the Applicant continued access to reasonable and necessary supports until such time as this proceeding is finalised, the parties agree in accordance with section 26 of the Administrative Appeals Tribunal Act 1975 (AAT Act) that the decision of the Respondent dated 17 June 2017 will be varied as follows:
(i)the date by which the Respondent must review the plan under Division 4 of the National Disability Insurance Scheme Act (NDIS Act) is to be 9 September 2018; and
(j)the funding for supports identified as reasonable and necessary under section 34 of the NDIS Act is increased as follows:
(i) the funding for support coordination is increased from $4,613.50 to $9,227; and
(ii) the funding for improved daily living is increased from $16,328.01 to $24,492.02; and
(iii) the funding for core supports is increased from $69,986 to $104,979.
The Tribunal Notes:
1This agreement is reached under section 26 of the AAT Act to ensure the continued availability to the Applicant of funding for reasonable and necessary supports until such time as the Tribunal proceeding is finalised.
2This agreement does not represent an agreement on the substantive issues before the Tribunal in this proceeding.
3The parties agree that within 14 days after the AAT determination of this proceeding, a new plan will be made.
CONSIDERATION
At the outset of the hearing, the parties explained that they had agreed for 50 hours of support coordination in the second participation plan to be increased to 100 hours of support coordination. Accordingly, having regard to this agreement and to the evidence before me, I will vary the review decision of 27 June 2017 to include 100 hours of support coordination.
During the hearing, it became clear that the parties were of the view that the reasonable and necessary core supports of approximately 1,515 hours of care for PNFK as set forth in the second participation plan should be increased to meet the care needs of PNFK.
The applicant is of course PNFK. Through her counsel and parents she requests the following hours of care.
First, on standard working weeks, from Monday to Friday, 14 hours of paid care for PNFK commencing at 7:00 am and concluding at 9:00 pm. The cost of the care between 8:30 am and 5:30 pm would be at the standard week day rate as set forth in the NDIA price guide. The hours between 7:00 am and 8:30 am, and between 5:30 am and 9:00 pm would be at higher rates. Where a long week end or public holiday cut into the standard work week, for example, a public holiday on a Monday, the remainder of the working week from Tuesday to Friday would warrant 14 hours of care per day.
Second, on standard weekends, 4 hours of care for PNFK from 11:00 am to 3:00 pm on both days, that is on Saturdays and Sundays.
Third, on four long weekends, 24 hour care of PNFK for three days to enable PNFK’s family to have respite.
Fourth, during the four weeks of annual leave of PNFK’s parents, two weeks of 9 hours of care for PNFK per day for fourteen days, and two weeks of 24 hour care of PNFK to enable the family respite.
The total funding sought for this care of PNFK is $221,094.42.
The Respondent put forward the following care arrangements for PNFK.
First, on standard working weeks from Monday to Friday, 11 hours per day. However, if PNFK’s Mother is not working full-time, paid care should be utilised for PNFK, only on the days she is working. For example, if PNFK’s Mother is working for three days a week, then PNFK should receive 11 hours care per day for the three days.
Second, on standard week end days, four hours of care for PNFK for both days, that is on Saturdays and Sundays.
Third, on two weekends, 24 hours care for PNFK for 48 hours.
Fourth, for ten public holidays a year, 9 hours of care for PNFK at the public holiday rate. For two public holidays which fall on weekends, 4 hours of care.
This equates to 3176 hours. The cost is $160,843.86.
Section 34(1) of the NDIS Act which has been quoted above, sets out the criteria for the funding of necessary and reasonable supports in six lettered paragraphs. From the evidence before me, the only relevant paragraphs are paragraphs (c), (e) and (f).
Under paragraph (c) the amount of paid care of PNFK must represent “…value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support”.
Under paragraph (e) the amount of paid care must take “… account of what…is reasonable to expect families, carers, informal networks and the community to provide”.
In relation to paragraph (f), the respondent asserted that at least some of the respite care “… is most appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered: (i) as part of a universal service obligation; …”
In interpreting section 34(1) as I have noted above, I am guided by the objects and general principles set forth in the NDIS Act. In particular, I note Article 7 of the United Nations Convention on the Rights of Persons with Disabilities which I have quoted above, and Articles 3 and 23 of the United Nations Convention on the Rights of the Child which I have also quoted above.
Thus, the best interest of PNFK who is a child with disabilities is a primary consideration when interpreting section 34(1) of the NDIS Act.
The third general principle set out in section 4 of the NDIS Act is especially important in the matter before me. Although it has been quoted above, I repeat section 4(3) of the NDIS Act which reads as follows:
(3) People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.
Finally, I take into account the financial sustainability of the NDIS in accordance with section 3(3)(b) of the NDIS Act.
It is easiest to examine the hours of care of PNFK before turning to the issue of respite care.
Hours of Care for PNFK
From the evidence before the Tribunal, It is clear that PNFK’s care needs are profound and that when she is awake, she cannot be left alone for more than a few minutes else she suffers distress. I have regard to the evidence before me of her parents and of Ms Y. I especially note the clear and cogent evidence of Dr X who has been treating PNFK since she was six days old.
From the evidence before me, I find that PNFK’s Mother and Father love and are devoted to PNFK and her care. I especially note the evidence of Dr X.
I further find that it is in the best interests of PNFK for her to be cared for in her home with her Mother and Father and siblings.
From the evidence before me, it is clear that caring for PNFK places strains on the entire family. Given the amount of care which PNFK requires, her parents have little time to care for her three siblings.
I have decided to vary the reviewable decision of 27 June 2017 to increase the core support hours of care for PNFK. In my view, these hours represent value for money and take due account of the care which PNFK’s family can bestow on her. I also take into account the financial sustainability of the NDIS.
First, on standard work weeks from Monday to Friday, 9 hours of care from 8:30 am to 5:30 pm, and 3 hours of care to be used flexibly either before 8:30 am or after 5:30 pm. This gives PNFK 12 hours of paid care.
Counsel for the Respondent argued that as PNFK’s Mother was working for only 18.75 hours a week, it was not necessary for PNFK to receive paid care on the week days on which she was not working.
In her evidence before the Tribunal, PNFK’s Mother said that she wished to undertake full-time work.
In my opinion, it is necessary to give her time to gear up for full-time employment. The second participation plan concludes at the latest on 9 September 2018. In these circumstances, I have decided not to lessen the week day care arrangements in order to enable PNFK’s Mother to have time to transition to full-time employment and to undertake that full-time employment.
Second, on standard weekends, 4 hours of care for PNFK on both days, to be used flexibly.
PNFK and Respite Care
The reach and scope of section 34(1)(f) of the NDIS Act is expounded upon in the Support Rules. Rule 3.5 of the Support Rules provides in part as follows:
Supports appropriately funded or provided through the NDIS
Schedule 1 sets out matters for the CEO to have regard to in considering whether supports are most appropriately funded or provided through the NDIS, rather than through other service systems …
Clause 7.11(a) in schedule 1 of the Support Rules reads as follows:
7.11 The NDIS will be responsible for:
(a)supports for children, families and carers, required as a direct result of a child's disability, that enable families and carers to sustainably maintain their caring role, including community participation, therapeutic and behavioural supports and additional respite and aids and equipment;
(b)where a child is in out-of-home care—supports specific to the child's disability (or developmental delay), which are additional to the needs of children of similar ages, in similar out-of-home care arrangements. The diversity of out-of-home care arrangements is recognised and the level of reasonable and necessary supports will reflect the circumstances of the individual child.
Counsel for the respondent asserted that the words “and additional respite” in clause 7.11(a) show that the NDIS is only liable to supply additional respite care. In other words, it is up to families and informal networks to provide basic respite care.
I note the Council of Australian Governments “Principles to Determine the Responsibility of the NDIS and Other Service Systems” which do amplify what is meant by additional respite care.
In LNMT and National Disability Insurance Agency [2018] AATA 431 which is a recent decision in this Tribunal, Deputy President K Bean summarises these principles in the context of respite care. I gratefully adopt the Deputy President’s summary which reads as follows:
44At the hearing, the respondent directed me to the Council of Australian Governments “Principles to Determine the Responsibility of the NDIS and Other Service Systems” (COAG Principles) which include the following:
(a)Relevant state and territory authorities will be responsible for meeting the needs of children with disability in out-of-home care and support to carers of children in out of-home care, including making reasonable adjustments to meet the needs of children with disabilities.
(b)The NDIS will fund supports required due to the impact of the child’s impairment/s on their functional capacity where a child with disability is in out-of-home care and has support needs that are above the needs of children of a similar age. The diversity of out-of-home care arrangements is recognised and the level of “reasonable and necessary” supports will reflect the circumstances of the individual child. The standard supports provided by the child protection system to carers relevant to their out-of-home care arrangement will continue.
(c)The NDIS will be responsible for support for children, families and carers required as a direct result of the child’s or parent’s disability, including supports that enable families and carers to sustainably maintain their caring role, including community participation, therapeutic and behavioural supports, additional respite, aids and equipment and supports to help build capacity to navigate mainstream services.
(d)The NDIS and the systems providing child protection and family support will work closely together at the local level to plan and coordinate streamlined services for individuals requiring both child protection and/or family support and disability services recognising that both inputs may be required at the same time or that there is a need to ensure a smooth transition from one to the other.
45The Principles also nominate the following as “reasonable and necessary NDIS supports for eligible people”:
(i)Funding disability-specific family supports, which are required due to the impact of the person’s impairment/s on their functional capacity, including for parents with disability.
(j)Funding the reasonable and necessary disability support needs of children with disability in out-of-home care where these supports are required due to the impact of the child’s impairments on their functional capacity, and are additional to the needs of children of similar ages, including:
skills and capacity building for children with disability;
supports to enable sustainable caring arrangements (such as additional respite and outside school hours care);
home modifications (consistent with other applied principles);
therapeutic and behaviour support; and
equipment and transport needs (consistent with other applied principles).
In its suggested increase in the hours of paid care for PNFK, the Respondent has provided two weekends of 24 hours care, that is for 48 hours for respite care while the family has break time.
There is very little evidence before the Tribunal about the availability of respite care from other services. PNFK’s family did utilise the Commonwealth Emergency Respite Service, but it appears that this agency deals mainly with families in crisis situations. There is also evidence concerning the family’s visits to Bear Cottage, but again its availability appears to be limited.
In these circumstances, I find that it is necessary to provide further hours of respite care for PNFK to enable the family, and especially the other three children to have time with their parents. Added respite care will also enable PNFK’s parents to spend time together. This added respite care will assist the parents to continue to care for PNFK in her own home.
The extra hours are as follows:
First, on two weekends, 24 hours care for PNFK for 48 hours to enable the other family members to have break time.
Second, on two long weekends, 24 hours of paid care for PNFK totalling 72 hours, to enable the other family members to have break time.
Third, on two weeks of the four weeks of the annual leave of PNFK’s Father and Mother, 24 hours of care for PNFK per day being 168 hours per week, totalling 336 hours for the two weeks, to enable her family to have some respite time.
Fourth, for the remaining two weeks of annual leave, 9 hours care of PNFK on week days, that is from Mondays to Fridays, and four hours of care on each Saturday and Sunday.
Fifth, for ten public holidays a year, 9 hours of care for PNFK at the public holiday rate. For two public holidays which fall on weekends, 4 hours of care at the public holiday rate.
DECISION
For the reasons given above, the reviewable decision dated 27 June 2017 is varied as follows:
1.PNFK be given 100 hours of support coordination;
2.On standard work weeks from Monday to Friday, PNFK be given 9 hours of care from 8:30 am to 5:30 pm, and 3 hours of care to be used flexibly either before 8:30 am or after 5:30 pm;
3.On standard weekends, 4 hours of care for PNFK on both days, to be used flexibly;
4.On two weekends, PNFK be given 24 hours care, totalling 48 hours;
5.On two long weekends, 24 hours of paid care for PNFK totalling 72 hours;
6.On two weeks of the four weeks of the annual leave of PNFK’s Father and Mother, 24 hours of care for PNFK per day being 168 hours per week, totalling 336 hours for the two weeks;
7.For the remaining two weeks of annual leave, 9 hours care of PNFK on week days, that is from Mondays to Fridays, and four hours of care on each Saturday and Sunday;
8.For the remaining public holidays, 9 hours of care for PNFK at the public holiday rate; and
9.For the two public holidays which fall on weekends, 4 hours of care for PNFK at the public holiday rate.
I certify that the preceding 129 (one hundred and twenty nine) paragraphs are a true copy of the reasons for the decision herein of Professor R McCallum AO, Member
.........................[sgd]...............................................
Associate
Dated: 28 March 2018
Date(s) of hearing: 27 February 2018 and 2 March 2018 Solicitors for the Applicant: Ms N Cannon, Legal Aid Solicitors for the Respondent: Ms M Donald, Sparke Helmore
0
1
0