PNMJ and National Disability Insurance Agency
[2015] AATA 866
•11 November 2015
PNMJ and National Disability Insurance Agency [2015] AATA 866 (11 November 2015)
Division
NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s)
2015/2038
Re
PNMJ
APPLICANT
And
National Disability Insurance Agency
RESPONDENT
DECISION
Tribunal Senior Member J F Toohey
Regina Perton, MemberDate 11 November 2015 Place Melbourne The decision under review is varied so as to approve in PNMJ’s plan a statement of supports that includes funding for 168 hours of care per week for six months. With effect from the date of our decision, the Tribunal approve a statement of supports in PNMJ’s plan that comprises funding for 168 hours of care per week and other supports included in PNMJ’s plans to date. The plan is to be reviewed by six months from the date of this decision.
........................................................................
Senior Member J F Toohey
CATCHWORDS – National Disability Insurance Scheme – child – early intervention –reasonable and necessary supports – whether full-time in-home care a reasonable and necessary support – what is reasonable to expect families, carers, informal networks and the community to provide – mother also a participant in the NDIS – decision under review varied
Legislation
National Disability Insurance Scheme Act 2013 ss 3, 4, 32, 33, 34, 37, 48, 49, 99, 100, 103 and 209
Administrative Appeals Tribunal Act 1975 ss 25 and 37
Cases
Burston and National Disability Insurance Agency [2014] AATA 456
Secondary Materials
National Disability Insurance Scheme (Supports for Participants) Rules 2013
REASONS FOR DECISION
Senior Member J F Toohey
Regina Perton, MemberBackground
PNMJ is a three year old child. She was born with multiple serious, complex disabilities and requires 24-hour care. She lives at home with her parents and older sister. She meets the early intervention requirements in the National Disability Insurance Scheme Act 2013 (the Act) and is a participant in the National Disability Insurance Scheme (NDIS).
Each participant in the NDIS has a plan prepared with the assistance of, and approved by, the CEO of the National Disability Insurance Agency (NDIA). A plan comprises a participant’s statement of goals and aspirations and a statement of participant supports. The statement of participant supports includes the reasonable and necessary supports, if any, that will be funded under the NDIS: sub-sections 32(1), 33(1) and 33(2) of the Act.
A number of plans for PNMJ have been approved since she became a participant in July 2013.
On 4 November 2014, the NDIA approved a plan that included funding for “a total care package with provision for 136 hours/week of care for 6 months”. On 16 April 2015, the NDIA reviewed the plan at the request of PNMJ’s father who sought full-time “24/7” care. The reviewer confirmed the decision to fund 136 hours care per week. On 28 April 2015, PNMJ’s father sought review by the Tribunal of that part of the plan.
PNMJ’s parents say that funding for a full-time in-home carer is reasonable and necessary within the meaning of the Act. At the least, they say, it is reasonable and necessary for sufficient time to allow certainty and stability to the arrangements for PNMJ’s care.
The NDIA says funding for 136 hours of care each week, which can be used flexibly as PNMJ’s parents determine, is reasonable and necessary within the meaning of sub-section 34(1) of the Act, taking into account “what it is reasonable to expect families, carers, informal networks and the community to provide”.
PNMJ’s mother is also a participant in the NDIS. She was diagnosed with a medical condition in 2010 and became a participant in 2015. While not the subject of this review, the supports she receives under her plan are relevant insofar as they support her to care for PNMJ. The NDIA proposes that a comprehensive review be undertaken of her needs to determine how best to meet their joint needs for support. The NDIA submits that, pending the outcome of that review, there should be no increase in funded hours of care.
We have to decide whether funding for 136 hours of in-home care for PNMJ each week is reasonable and necessary, or whether funding for additional care, as requested by PNMJ’s parents, should be approved.
Review by the Tribunal
Section 99 sets out the decisions of the CEO that are reviewable decisions for the purposes of the Act. A decision that a particular support requested by a participant is not reasonable and necessary is not in such terms reviewable. Rather, a decision under subsection 33(2) to approve the statement of participant supports in a participant’s plan is a reviewable decision: sub-section 99(d).
A person who is directly affected by a reviewable decision may ask the NDIA to review that decision and a reviewer must, as soon as reasonably practicable, make a decision confirming or varying that decision, or setting it aside and substituting a new decision: subsections 100(2) and (6).
By virtue of s 103 of the Act and s 25 of the Administrative Appeals Tribunal Act 1975, the Tribunal has jurisdiction to review a decision made by a reviewer under subsection 100(6).
We are satisfied that the Tribunal has jurisdiction to review the decision made by the reviewer on 16 April 2015. However, as we discuss below, that task can be more complicated than first appears because the relevant plan may no longer be in effect by the time the matter comes before the Tribunal for determination.
Review of participants’ plans
We think it worth saying something at this point about the provisions in the Act concerning review of participants’ plans.
The different kinds of review provided for by subsection 48(2) and under Part 6 of Chapter 4 of the Act were considered by the Tribunal in Burston and National Disability Insurance Agency [2014] AATA 456. In this matter, different issues arise.
A participant’s plan must specify the date by which, or the circumstances in which, the NDIA must review the plan: sub-section 33(2)(c). The NDIA must review a plan before the review date specified in it: sub-section 48(6). Commonly, the date specified is one year after the plan was first approved.
It is common for a participant to have a number of plans approved within a short time, especially if he or she has recently become a participant, and as supports are added or varied as needs become clearer.
The plan approved for PNMJ on 4 November 2014 stated that it would be reviewed by 1 November 2015 “to see if anything needs to change”. The statement of participant’s supports included “a total care package with provision for 136 hours/week of care for 6 months” comprising blocks of care at weekday, evening, overnight, weekend and public holiday rates. It is not clear what was to happen at the end of six months.
In January 2015, PNMJ’s father wrote to the NDIA asking for the hours to be allocated differently so as to cover seven evenings, and for an increase in the total funded hours. He set out the reasons the family was struggling to cope with 136 hours care each week.
On 16 April 2015, the reviewer decided to “uphold” the level of support in the plan, to be used flexibly “as best suit [PNMJ’s] and your needs”. The reviewer further decided to “uphold the decision for the support hours to be reviewed within 6 months” to give PNMJ’s parents time “to implement other supports to contribute to sustaining her informal support”. She stated the “NDIA consider it best practice to monitor intensive supports over periods of 3 to 6 months to ensure that we can proactively respond to evidenced participant needs”.
It appears the reviewer’s decision was understood by the NDIA and PNMJ’s parents to be that funding for 136 hours care each week would continue for a further six months up to November 2015 when the plan was due for review. In the meantime, PNMJ’s parents and carers have continued to keep detailed records of her seizures, sleep patterns, carer availability, and the hours spent by the father in what he describes as administrative tasks associated with her care.
Since 28 April 2015, when PNMJ’s father sought review by the Tribunal of “her support hours” and asked for “certainty … throughout the duration of the plan”, further plans have been approved. In plans approved on 29 April 2015 and 13 May 2015, adjustments were made which led to relatively modest increases in funding. On 19 August 2015, a plan was approved which led to a substantial increase in funding. We understand a further plan was approved within the last two or three weeks but have no information about it. Each plan has made changes to other supports but each has reiterated the decision concerning funding for 136 hours of in-home care “for 6 months”.
Where changes are made before the date for review specified in the original plan, NDIA practice is to re-issue the original plan with the changes incorporated, but with the same start date and review date (in this case a start date of 4 November 2014 and review date of 1 November 2015).
The NDIA treats such changes as “amendments” to the plan. However, sub-section 37(2) provides that a participant’s plan cannot be varied after it comes into effect; it can only be replaced under Division 4 (of Part 2).
Division 4 concerns “reviewing and changing participants’ plans”. A participant may ask the CEO of the NDIA to conduct a review of his or her plan at any time: sub-section 48(1). As well, the CEO may conduct a review on the CEO’s initiative at any time: sub-section 48(4). If a review is carried out under section 48, a new plan must be prepared: s 49. A participant’s plan ceases to have effect when it is replaced by another plan under Division 4: sub-section 37(3).
The effect of these provisions is that the plan as originally approved on 4 November 2014 ceased to be in effect when it was replaced by subsequent plans, regardless of the same “start date” and “review date”. Where the approval for a particular support has not changed in subsequent plans, this may be of little practical consequence but in some matters before the Tribunal it has been difficult to identify the plan being reviewed and whether it still has any practical effect.
The intersection between the provisions in the Act concerning review of plans, and the practices concerning amendment and replacement of plans warrant closer consideration.
Objects and principles in the Act
The objects of the Act are set out in s 3. As well as giving effect to Australia's obligations under the UN Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child, they include:
·supporting the independence and social and economic participation of people with disability;
·providing reasonable and necessary supports, including early intervention supports, for participants; and
·enabling people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports.
Section 4 sets out general principles by which actions under the Act are to be guided. They include that: 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; people with disability should be supported to receive reasonable and necessary supports, including early intervention supports; and the role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected: sub-sections 4 (3), (5) and (12).
When giving effect to the objects of the Act or performing any function or exercising any power under the Act, regard must be had to the need to ensure the financial sustainability of the scheme: sub-sections 3(3)(b) and 4(17).
Reasonable and necessary supports
Sub-section 34(1) provides that, for the purpose of specifying in a statement of participant supports the reasonable and necessary supports that will be funded under the NDIS, the Tribunal must be satisfied of all of the following in relation to each:
(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.
The only matter in issue in these proceedings is sub-section (e).
The Support for Participants Rules
By sub-section 209(3), the Minister has made Rules about matters concerning determinations under the Act including the determination of the reasonable and necessary supports that will be funded under the NDIS: National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Rules). The Rules form part of the legislation.
Rule 3.4 provides that, in deciding for the purposes of sub-section 34(1)(e) whether funding or provision of a support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide in respect of a participant who is a child, we must consider each of the following:
(i)that it is normal for parents to provide substantial care and support for children; and
(ii)whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii)the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(ii)whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing.
In all cases, we must consider the desirability of “supporting and developing the potential contributions of informal supports and networks within their communities”.
Information before the Tribunal
We have before us a large number of documents provided by PNMJ’s parents including reports from her treating doctors, allied health professionals and one of her carers, correspondence between her parents and the NDIA, and detailed records of daily schedules of her seizures, medications, sleep patterns and care needs.
We also have a large number of documents provided by the NDIA in accordance with s 37 of the Administrative Appeals Tribunal Act 1975 (“T-documents”).
We heard evidence from:
·PNMJ’s parents, who also showed us several short DVDs of her at home;
·her paediatrician since birth, Dr C;
·her occupational therapist since May 2015, Ms G;
·Ms H, who has been her main in-home carer for the past two years;
·the mother’s treating psychiatrist, Dr RB; and
·the father’s treating psychologist, Dr ZB.
Meg Parsons, the Executive Director of the Barwon NDIS Trial Site, who made the decision under review, provided information at the hearing about NDIA processes and the formulation and review of PNMJ’s plans.
There is no dispute about the facts although some matters, particularly concerning the nature and extent of PNMJ’s seizures, required clarification at the hearing.
PNMJ’s disabilities
PNMJ has been under the care of a team of specialists and allied health professionals for neurological, respiratory, developmental and other problems since birth. The following is taken from Dr C’s reports and the evidence he gave at the hearing. It is consistent with what we heard from PNMJ’s parents, her principal carer and occupational therapist, and with information in a range of medical reports.
By the time she was two months old, it was apparent that PNMJ had a serious neurological disorder. At five months, she had severe uncontrolled epilepsy with up to 30 seizures every day, severe neurological irritability which led her to cry for up to 15 hours each day, developmental delays and difficulty with feeding. She required 24-hour supervision and care.
In addition to infantile epileptic encephalopathy, Dr C reports that PNMJ has:
·hypermetropia (long sightedness)
·cortical vision impairment
·hearing impairment
·hypoertonia
·feeding difficulties requiring her to be fed by means of a tube
·GORD
·laryngomalacia
·recurrent pneumonia, eye and ear infections
·global developmental delay
In February 2015, Dr C reported that PNMJ has “intractable epilepsy of unknown cause which has resulted in severe uncontrolled seizures and neurological irritability”. She was having “hundreds of seizures” daily including daily life-threatening seizures requiring emergency medication. She has been unresponsive to all medical interventions including 13 anti-epileptic medications, a medical ketogenic diet, and vitamins. She cannot be left unattended for any period due to her susceptibility to silent seizures and her poor airway control. When in hospital, she must be monitored by video if staff have to leave the room for any reason.
Dr C reported that PNMJ has severe neurological irritability before and after seizures that can mean “up to eight hours of screaming, thrashing and irritability” when she needs to be held for prolonged periods. She is on the maximum dose of Gabapentin which helps to a degree but the problem remains severe, ongoing and intractable; it interrupts her parents’ sleep and takes an enormous emotional toll on the family.
45.PNMJ cannot support her own weight and has to be carried everywhere. She is unable to roll, sit, crawl or walk. She can now spend some time upright in a standing frame. She cannot swallow, and receives food and medication by means of tubes to her stomach and bowel.
Giving evidence to the Tribunal, Dr C said that PNMJ’s global developmental delay has become more noticeable with time, and all efforts to properly control her epilepsy have failed. She has shown some pleasing progress over time but the seizures themselves, and “what they take out of her”, make it difficult for her to engage with therapists. Her irritability has lessened somewhat this year but her seizures have become more severe.
Despite extensive investigation by genetic, neurological and metabolic specialists, doctors have been unable to identify the underlying cause of PNMJ’s disabilities. Dr C gave evidence that the lack of diagnosis for a child with severe disabilities makes prognosis and medical management particularly complex and uncertain and is especially hard on a family. He expects PNMJ’s “core problems” of global developmental delay and intractable epilepsy will remain constant and ongoing.
The frequency, nature and length of PNMJ’s seizures were the subject of some discussion at the hearing. They vary from “absent” or “silent” seizures, to “jerks” or “jolts” lasting a brief time or “clustering”, to life-threatening tonic-clonic seizures. Whether a seizure will escalate to that point is unpredictable. Her parents and carers keep records which, based on his own observations of PNMJ during appointments and periods spent in hospital, Dr C believes are reliable. We accept that she commonly has up to three potentially life-threatening seizures each day.
PNMJ has a Seizure Management Plan which comprises levels of escalation through anticonvulsant medication after five minutes with close monitoring to guard against aspiration, to intramuscular phenobarbitone and calling an ambulance after 10 minutes; if the seizure continues after a second dose of phenobarbitone, phytoin is to be administered in hospital. Dr C says he has only one other child with such a plan and, without it, PNMJ would likely have presented at hospital more frequently.
PNMJ’s father is a medical professional. He can administer injections that carers are not permitted to, and that her mother lacks confidence doing. As a result, escalation to the point of calling an ambulance is usually averted. Dr C told us the father’s training enables him to make judgement calls, and he has a level of confidence and calmness that others, including her mother do not have, which puts the responsibility for PNMJ’s care on him, even when her mother or carers are available, leaving him little scope for simply parenting her.
Dr C gave evidence that it is possible for one person with the necessary confidence to manage PNMJ’s seizures but it is a lot easier with two who can attend to drawing medication, calling an ambulance, administering oxygen, and monitoring and comforting her. Her size and weight make it more difficult and demanding as she grows older to manage her physically.
Care arrangements
Shortly after PNMJ was born, her father took leave from his full-time job as a medical professional. Income protection insurance covered his salary until July 2014 when he returned to work two days a week. He continues to work two days a week. Her mother was working full-time before taking maternity leave and then a redundancy package. She has not worked since PNMJ was born and has been studying part-time since 2014.
For approximately six months after PNMJ was born, the family had no additional carers until funding became available through a state program for 30 hours care each week. When the NDIS commenced in July 2013, funding was provided for approximately 60 hours care each week. It increased to 80 hours a week for a period then to 136 hours a week from November 2014.
Any hours unused at the end of a week can be “banked” and used at any time during the life of the plan. When a plan ends, the practice is for any hours “in credit” to be lost, and the hours to be “reset” to the original allocation. PNMJ’s care hours have been “in credit” for some time mainly because, approximately once each week and sometimes twice, a carer has not been available.
Because they are “in credit”, PNMJ currently has carers for 143 hours each week. A carer is not in the home on weekdays from 9:30am to 12:30pm, Saturdays from 12pm to 6pm, and Sundays from 9:30am to 1:30pm. We accept that, even using the extra seven hours a week of “credit” the parents are struggling.
The NDIA approved 136 hours each week based on a request by the father in October 2014. At the time, he said they needed “24/7 care” but 136 hours was the minimum that would allow him to work full time and the mother to study part time as well as to do “normal things like sleep, shower and dress every day”. We accept the father’s evidence that he pitched his request at what he thought might be acceptable to the NDIA after being told that full-time care would not be approved.
The father says he quickly realised 136 hours each week were insufficient particularly when the mother became seriously unwell for several weeks around October 2014. Her condition is episodic in nature. He has not returned to work full-time and says he cannot contemplate doing so given PNMJ’s and the mother’s needs. He works shifts from 7am to 5pm on Wednesdays and Fridays. His employer is accommodating and he has been able to rearrange his shifts when they need to take PNMJ to appointments or if a carer is not available. Ordinarily he would be expected to do an overnight shift but is allowed to work day shifts only.
The mother currently attends classes for five hours on Tuesdays and two hours on Thursdays. She has a Disability Support Coordinator who helps her plan her studies. She is at home alone with PNMJ for three hours on Wednesday and Friday mornings while the father is at work and a carer is not available.
Difficulties finding trained carers
At present, there is a pool of eight trained carers the family can call upon. The number is limited because of the specialist training required to deal with PNMJ’s complex needs. Training is provided through the Royal Children’s Hospital.
Despite extensive advertising in their local area for suitable carers, PNMJ’s parents have been unable to increase the pool. Where prospective carers have shown interest, some have declined to take on the work because of the nature and severity of PNMJ’s disabilities, and some agencies have refused to provide carers on the ground of insufficient insurance cover. Adding to the complexity of the situation is that a carer who has not been with PNMJ for two weeks must undergo a form of refresher training before working with her again. The limited number of trained carers means there are frequent times when a carer is not available, often at the last minute.
The NDIA acknowledges the difficulties the family has had finding suitable carers. To this end, the plan prepared on 14 November 2014 included funding for a “support coordinator” to work with the family to help implement the plan including “building the family’s capacity to support [PNMJ’s] needs”. The coordinator would provide “regular reports on progress towards goals required to inform planning and provision of funded supports …”.
Ms Parsons acknowledges that, for various reasons, “support coordination” has not been as effective as it might have been. An aim of the proposed comprehensive review under the mother’s plan will be to strengthen this support.
The mother’s medical condition
PNMJ’s mother was diagnosed with a medical condition in September 2010 and has been treated by Dr GB since. He has provided medical reports and gave evidence by telephone.
For the sake of the mother’s privacy, we do not propose to go into details of her condition. We accept Dr GB’s evidence that it fluctuates; she is always at risk of an “episode” and her condition requires careful management. It limits her ability to care for PNMJ, especially on her own.
Dr GB told us that, for six to eight weeks around October 2014 the mother was seriously unwell and the father had to care for her as well as for both children. Dr GB said that, without intensive involvement by himself and the father, she would almost certainly have needed hospitalisation. The difficulties they were having at the time finding adequate care for PNMJ was one of the “significant issues” that led to her illness.
Dr GB says features of the mother’s personality make PNMJ’s circumstances, including her lack of diagnosis, particularly confronting. She struggles with the unpredictability of PNMJ’s seizures and care arrangements, and the constant sense of crisis within the family, and her condition is particularly affected by lack of sleep. He does not believe she can attend to PNMJ’s medical needs on her own. He supports an increase to 168 hours care each week to help with her condition and to reduce the stress of feeling overwhelmed and out of her depth. He supports her part-time study because it has given her a sense of control and purpose as well as time out of the home.
The father’s medical condition
PNMJ’s father was diagnosed with serious depression and anxiety in November 2012 and has been treated by Dr ZB since. He currently sees her approximately every two months. Dr ZB has provided medical reports and gave evidence by telephone.
Dr ZB gave evidence that the father’s condition has improved but she does not believe it will stabilise until the stress on the family is reduced and he has more active support. She rates his anxiety as “more than in the mild range” and his depression as “mild” but still clinically significant. She says it is difficult for him to use techniques such as relaxation and breathing while managing everything at home including the mother’s condition.
Dr ZB believes that returning to work was “definitely positive” for the father but she would not recommend increasing his hours at this point. She agrees that having a full-time carer available would improve his ability to function and cope, and would help manage his own condition.
Ms H’s evidence
Ms H has been PNMJ’s principal funded carer for approximately two years. She has spent more time with PNMJ than anyone other than her parents. She provided a written statement and gave evidence at the hearing.
Ms H told us that, when she first cared for PNMJ, she sometimes screamed for up to eight hours. Her screaming is less severe now but her seizures have become longer and more severe. She now has up to three seizures each day that last more than five minutes and require the Seizure Management Plan to be activated. When the father is at home, as he usually is, he administers phenobarbitone which she and other carers are not permitted to administer. Carers are not allowed to leave PNMJ unattended or unobserved at any time.
Ms H supported the parents’ account of how frequently carers are not available, and said most carers are not as confident as she is and need assistance and guidance from the parents. Even so, she has only been alone with PNMJ on rare occasions for a few minutes such as when the father had to leave the house briefly.
Sleep diaries kept by PNMJ’s parents and carers show that she usually sleeps for six to eight hours at night, and sometimes longer. In that time she may be awake for periods of up to half an hour. She can wake up to five or six times and need settling, and she always requires repositioning every two hours.
Ms G’s evidence
Ms G has been PNMJ’s occupational therapist since May 2015. She has provided a written statement and gave evidence at the hearing.
Ms G provides therapy weekly or fortnightly as part of a “trans-disciplinary package” funded by the NDIS. She is the “key worker” of a group that includes a physiotherapist and speech pathologist who liaise with each other. She reports that PNMJ needs “intensive one on one support across the day and night” and “full support from parents/carers to be placed in and out of all equipment and to be monitored whilst in this equipment”.
Ms G told us that every time she has been to the house a carer, and either the father or the mother, has been present. She says that, as PNMJ has become heavier, she needs two people to transfer her between, for example, her bed and a chair; she cannot help herself at all, and she needs a mobile hoist. She does not think the mother can attend to her care alone and it is not ideal for anyone to do it alone.
Availability of family and other informal supports
The informal supports available to the family are limited. The father’s parents both work four days each week. They help, mainly with caring for the older child if there is an emergency or if the parents are held up at appointments with PNMJ when they will pick up the older child from school. His mother is caring for her own elderly parent. One of the father’s sisters is unwell herself. His other sister, who is a nurse, took time off and stayed in the house throughout the Tribunal hearing but that is unusual because she lives some distance away. He has a brother who works full-time and is not available.
The mother’s father has dementia and is cared for at home by her mother who has a medical condition herself. It is becoming more difficult to care for him and for PNMJ’s older sister to be in the home with him. PNMJ’s mother has a sister who is a single parent with two children, a brother who lives in Melbourne, and one who lives in another state. For reasons of their own families and distance, they are not available.
79.The need for a trained carer to be with PNMJ at all times means friends or others cannot step in to relieve the family as they might otherwise. The plan approved for PNMJ on 4 November 2014 and subsequent plans recognise that her “specialist care needs mean that extended family members are unable to provide alternate care for [her].
80.PNMJ’s parents say their circle of friends has decreased. Members of their church have offered support in the form of meals and the like but have fallen away. As well as their individual counselling, they have attended some family counselling but say it is hard to get to. They have taken their older daughter to a psychologist to help with behavioural problems.
The Support for Participants Rules
There is no question that PNMJ needs 24 hour care. There is no question that her needs are highly complex, in particular her need for constant monitoring because of the risk of a fatal seizure. Her circumstances are complicated further by difficulties in finding suitably trained carers, and by her mother’s disability. Without the father’s training and experience as a medical professional, it seems unlikely the family could have sustained caring for PNMJ at home.
There is no argument that the carer arrangements to date have been unstable despite the hours of care provided for in PNMJ’s participant’s plan. The question remains whether the level of care sought by her parents is reasonable and necessary within the meaning of the Act.
We will consider the matters in Rule 3.4 in turn.
That it is normal for parents to provide substantial care and support for children
There can be no argument with the proposition that it is normal for parents to provide substantial care and support for children. Parents commonly reduce their working hours in order to care for the children, or pay for child care if grandparents or other informal supports are not available to help out while they work.
There is no argument that PNMJ’s parents are intensely involved in every aspect of her care. As well as substantial care and support by way of attending to her daily physical and emotional needs, they are involved in the full range of additional care she requires because of her disabilities, and the father’s training as a medical professional means he is involved in her medical care to a greater extent than most parents. The lack of suitable informal supports means they have little relief.
One of the parents takes their older daughter to calisthenics for an hour and half on Saturday mornings. Otherwise, the father is away from the house at work for ten hours each week and the mother is at classes for seven hours. They arrange their schedules so that they are not both away from the house at the same time.
To say that it is normal for parents to provide substantial care and support for children does not detract from the fact that PNMJ’s parents care well beyond that provided by most parents.
Whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age
88.There is no doubt that PNMJ’s care needs are substantially greater than those of other children of a similar age, and we are satisfied they are substantially greater than most children with disabilities.
89.In addition to her medical care, PNMJ has emotional and developmental needs beyond those of most children with and without disabilities: her Seizure Management Plan is more detailed and involves more medications than most and she often needs two adults to manage them; she cannot be left unattended; she is frequently in pain and distress, and her sleep is interrupted; she is at greater risk of serious infection because her neurological system has not developed; she has an increasing need for two people to transfer her; her medical management and planning for future treatment is complicated by her lack of diagnosis; and carers need specialised training.
The extent of any risks to the wellbeing of the participant’s family members or carer or carers
PNMJ’s parents have described in written submissions and oral evidence the impact of caring for her. Their sleep is interrupted, they have no social life, and they worry about the effects on their older daughter who has had emotional difficulties and has a teacher’s aide to help her at school. The father’s and mother’s psychologist and psychiatrist respectively have given evidence, which we accept, about the risks to their mental and emotional wellbeing of continuing with the present arrangements.
The father is the primary carer for PNMJ and her mother. He says the mother’s sleep is a priority because of her condition. He describes himself as “at breaking point” and does not believe he can continue to withstand the stress he and the family are under, but the alternative is “unthinkable”. He has kept records of the hours he spends each week in what he describes as “administrative” tasks such as phone calls and emails, arranging appointments, carer handovers, and daily and weekly preparation of medications. He says a conservative estimate is over 20 hours each week on “administration”, 10 hours on appointments, and five hours on emergency care during seizures. We accept his records are reliable.
We accept the parents’ evidence that their social life is virtually non-existent and neither has the time or the energy for activities such as exercise and relaxation techniques that their doctors say would help them cope with their stress. They attend their church when they can and have arranged the carer hours so that a carer can go with them to look after PNMJ during the service. Their financial circumstances have changed dramatically since both parents worked full-time. The father would like to work an additional shift one evening each week to help the family financially. He would like to work full-time but accepts that is not realistic at present.
We heard evidence, which we accept, that during the first two years of PNMJ’s life her older sister spent more time with her grandparents than at home. Her parents say that, when she was at home, they did not have the energy to be good parents to her and were unable to spend quality time with her. She has had emotional problems and has struggled at school.
We accept that the parents do not feel they can sustain caring for PNMJ without more assistance. We accept that the stress they are under is extreme and poses a risk to their individual wellbeing and to the wellbeing of the family.
Whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing
95.It probably cannot be said at this point that additional care would itself improve PNMJ’s present or future capacity. However, we accept the parents’ evidence that they spend so much time attending to her medical needs that they have little if any time for simply being her parents. We accept that, to the extent that they are under severe stress, PNMJ’s wellbeing is affected.
The desirability of supporting and developing the potential contributions of informal supports and networks within their communities
96.There can be no argument with the desirability of supporting and developing the potential contributions of informal supports and networks within a participant’s community. We accept that the parents’ circle of friends has dwindled and, unfortunately, up until this point in time, there have been limited opportunities for them to develop other informal supports and community networks.
The review proposed by the NDIA
NDIA representatives at the hearing acknowledged the highly complex circumstances facing PNMJ’s family and that finding suitable providers so that carer arrangements are stable has been difficult.
The NDIA has recently engaged an agency to undertake a comprehensive review of the mother’s need for supports. The review will be funded from the mother’s package and will focus on her needs, rather than PNMJ’s, but will consider their needs as a whole and will aim to identify provider agencies that provide carers and can manage shifts, and assess the “baseline training requirements” for carers and how many suitable carers are available.
For reasons we need not go into there have been some delays in starting the review but we understand it will commence shortly. It is anticipated that it will take from 12 weeks to 16 weeks after which the NDIA will consider the recommendations and PNMJ’s plan may or may not be amended. The father questions the expertise of the selected agency to assess the needs of a mother caring for a child with PNMJ’s severe disabilities but Ms Parsons says she is confident of their expertise and we accept her opinion.
PNMJ’s parents say they welcome the opportunity for the review but they are concerned about the time it will take and how they will manage in the meantime.
Consideration
We accept that the instability of the care arrangements at present is putting the wellbeing of the family at risk. We accept the parents’ submission that additional care would relieve the current stress on the father in particular. We accept that they would only have to cope with carers being unavailable at the last minute and not the “constant juggling” they now do to manage the hours when carers are not present.
Merely increasing the hours of care will not guarantee stability of the arrangements. It will not of itself mean sufficient carers are available, but we accept it will offer some relief to the father in particular. He is largely carrying the burden of caring for the whole family including PNMJ’s mother, as well as acting as a medical professional for PNMJ.
We have considered whether the current arrangement for funded care for 136 hours should continue pending the outcome of the comprehensive review proposed by the NDIA. Considering the substantial number of hours already funded, we would ordinarily think that the preferable approach. However, the highly complex circumstances in this case have led us to the decision that the funded care should be increased for 24-hour care for a period of six months.
The NDIA has advised that the expected start date of the review is still unknown. The best efforts of the family and the NDIA so far have had limited success in finding suitably trained carers and effecting a stable arrangement for PNMJ’s care. Ms Parsons acknowledges there have been difficulties obtaining information from the Royal Children’s Hospital about the “baseline training requirements” for carers for PNMJ. Given the task ahead of the review to assess the mother’s needs, identify suitable provider agencies and assess “baseline training requirements” for carers, it is difficult to see that a stable arrangement will be in place in less than six months.
We do not think the parents can sustain the current situation for as long as six months. The consequences for the family as a whole if they become unable to cope would be serious.
We have considered whether the plan should be replaced with one providing for 24-hour care for a longer period. We recognise that would give the family greater certainty but we are also mindful of the need to ensure the financial sustainability of the NDIS. While there is no legislative or policy cap on the amount of funding an individual can receive, PNMJ’s plan already involves a high level of funding. The NDIA is confident that suitable and reliable care arrangements can be put in place once the review is completed. In our view, six months strikes a balance which takes into account both PNMJ’s needs and the financial sustainability of the NDIS generally.
Conclusion
For these reasons, we are satisfied that funding for 168 hours care each week for six months from the date of this decision is a reasonable and necessary support within the meaning of the Act. We are satisfied that the funding of that support takes into account what it is reasonable to expect families, carers, informal networks and the community to provide.
The decision under review is varied so as to approve in PNMJ’s plan a statement of supports that includes funding for 168 hours of care per week for six months. With effect from the date of our decision, we approve a statement of supports in PNMJ’s plan that comprises funding for 168 hours of care per week and other supports included in PNMJ’s plans to date. The plan is to be reviewed by six months from the date of this decision.
109. I certify that the preceding 108 (one hundred and eight) paragraphs are a true copy of the reasons for the decision herein of Senior Member J F Toohey and R Perton, Member.
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Associate
Dated 11 November 2015
Date(s) of hearing
28, 29 & 30 October 2015
Representatives for the Applicant
Mr Miles Browne, Legal Aid
Representatives for the Respondent
Mr Michael Sassella, NDIA
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