Submission to the Joint Standing Committee on the National Disability Insurance Scheme:
4 March 2019
From: James O’Brien
President
Prader-Willi Syndrome Australia
Mailing address: PO Box 92 Kew, Vic 3101
ABN 13 100 005 561 Registered: A0040590E
Introduction
I represent people who have Prader-Willi Syndrome (PWS), their parents and supporters. People with PWS have a variety of functional impairments caused by their disability. As such, they have a need for many different types of supports in their NDIS Plans. We welcome the opportunity to contribute to this very important NDIS issues consultation¹, at the invitation of the Joint Standing Committee.
I will provide a general explanation about PWS to improve your understanding, and then list a number of the issues that members have reported to PWSA about their involvement with the NDIS.
Prader-Willi syndrome (PWS) is a rare, life-threatening condition. It is a complex, multistage genetic disorder affecting multiple systems in the body. It significantly impacts on behavior, learning, mental and physical health. Adults with PWS exhibit high anxiety, complex, and at times challenging behaviours, and cognitive dysfunction throughout their lives. They have poor judgement and are socially isolated. Whilst they have variable developmental delay, they all have significant cognitive and executive brain dysfunction. A defining feature of PWS is compulsive over-eating.
People with PWS typically die young, due to complications associated with obesity related causes. However, when
‘BEST PRACTICE GUIDELINES FOR STANDARD OF CARE IN PWS’ have been published, for use internationally. More successful outcomes are achieved when service providers, educators and others adopt the specialist skills and techniques needed to support people with PWS.
PWS is managed properly, people with the condition can be expected to lead a more ordinary life and live longer. They need life-long support from services and specialist accommodation.
Purpose
The feedback provided in this submission addresses the general operation of the NDIS. The Submission refers to the experiences of people with PWS, in their interactions with the NDIA and NDIS. Issues are raised, and suggestions for improvements are made.
Issues and recommendations
1. Inadequate access to PWS trained providers in regional, rural and remote communities (Thin Markets):
PWS is a rare condition. It is also a complex and challenging condition. As such, extra PWS-specific training is essential for providers if they are to deliver an effective service to someone with PWS.
Whilst medical and allied health workers might have heard of PWS, very few have encountered it in reality. As for disability workers, most have never heard of it at all, and evidence shows that untrained staff² working with people who have PWS, bring added adverse risks to the Participant.
¹ The Committee invitation was available from the web page https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/Gene ral_NDIS ² Prader-Willi Syndrome: The Behavioural Challenge - A Brief Summary for Professionals http://pittsburghpartnership.com/handouts/The%20Behavioral%20Challenge%20for%20Professionals.pdf
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PWSA Victoria has been offering professional, in-service training to providers with PWS clients for many years. It is now more important than ever to extend that service fairly across the nation, through the PWS Australia organisation (PWSA).
PWSA is re-thinking its person, family and community education and training services to enable ‘postcode blind’ delivery. That is, the same level of skilled PWS support should be available wherever a person lives in Australia. Due to the multi-system, multi-stage complexities of PWS, coupled with the rarity of the syndrome (1:15,000 live births), people with PWS living in regional, rural or remote communities experience considerable disadvantage in relation to the supply of support services in their local communities (physio/occupational/speech therapies, community education, community access support, daily living support, etc).
PWSA plans to seek grant funding to investigate and, if appropriate, implement a ‘Project ECHO’ style tele-mentoring program to improve equity and consistency of support services across Australia. Project ECHO is an initiative of the University of New Mexico. It plans to positively influence the lives of 1-billion people worldwide by 2025. It will do this by de-monopolising knowledge, using internet platforms. It will use Internet communication to develop ‘hubs’ of specialists that then train dispersed ‘spokes’ of practitioners/support workers, who then pass their knowledge to formal and informal supports/individuals/participants. The PWSA vision is to establish hubs of PWS specialists (who could be physically located anywhere in Australia, including at numerous simultaneous locations), who will then educate and enable spokes of families/support workers (simultaneously in up to 30 locations). The Zoom technology platform will enable improved delivery of NDIS funded support services in locations where they would generally not be available due to ‘thin markets’, resulting in additional positive outcomes for people with PWS.
Recommendation:
That the NDIA provide grant funding for a Project ECHO style tele-mentoring pilot program, designed to share the knowledge and skills of urban-based PWS disability specialists, to train remote ‘spokes’ of practitioners/support workers, who then pass their knowledge to individuals/participants. This would thereby enable delivery of appropriate NDIS funded support services, in locations where they would not normally be available.
2. Families of people with PWS have endured unacceptable bureaucratic hurdles to establish NDIS eligibility because PWS was removed from conditions recognised on NDIS List A (S. 24 of the Act.)
People with PWS are being given incorrect advice about their eligibility, just because the person with PWS can walk and talk. All people with PWS need some NDIS supports, at every age. People with PWS have multiple and complex needs, and are at risk of early death if the impairments are not managed properly. PWS is recognised internationally as a very challenging condition for the person, their families, support providers and authorities who have a duty of care to the individual. Whilst there is a spectrum of presentation of the characteristics, there is nevertheless a commonality of symptoms, and even the most high functioning person needs lifetime, 24/7 supports.
Recommendation:
As such, a diagnosis of PWS should be sufficient evidence for acceptance onto the NDIS. PWS should be on NDIS ‘List A; Conditions which are likely to meet the disability requirements in section 24 of the NDIS Act’.
3. PWS Participants have been given erroneous Plans
Participants have been prevented from seeing draft Plans. Errors have then been found in final Plans. This leads to a lack of trust in the NDIA and a waste of all stakeholders’ time and money trying to rectify the errors. This is particularly onerous to families who are already under a lot of stress caring for someone with PWS.
Recommendation:
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Participants want access to draft Plans; The NDIA must ensure that in future, PWS Participants are given an opportunity to review, and seek corrections on, their draft Plan.
4. People with PWS have been refused disability services and need a Provider of Last Resort
A significant part of PWS complexity is its multiple behavioural facets. These include autism, obsessive-compulsive actions, high anxiety, food seeking, and not uncommonly, physical aggression and psychosis. There is also a failure in executive functioning of the brain. These all lead to exceptionally challenging behaviours, making it very difficult for people with PWS to live in close proximity to others. They have often been asked to leave their accommodation because of their behaviour. They have also come into contact with the justice system, or are at high risk doing so as a direct result of their syndrome. Now that State governments have withdrawn from delivering disability accommodation and other services, some people who are refused support from services may have nowhere to go. This means their human rights could be abused by being forced into homelessness, dangerous accommodation or being held unnecessarily in a prison or mental health facility. The NDIA has been silent on how providers of last resort will be implemented, who they will be, and how Australians in need can access them. This silence is unacceptable.
Recommendation:
The NDIA should urgently liaise with each State and Territory government to ensure that a Provider of Last Resort is available. The government should be the provider of Last Resort support services, using an integrated model. That is, government should be both the landlord and the service provider, until the Participant has stabilized, built capacity and can choose a different option for their accommodation. Whilst in NDIS theory the landlord and SIL provider should be different, Participants should be given a choice, one of which is an integrated service option (premises and SIL), in the case of Provider of Last Resort.
5. Bad experiences at interface with health system
People with PWS are often overweight or obese. When they go into hospital they have been known to come out even fatter. This is not acceptable. Hospitals are supposed to make people more healthy, not sicker. In addition, people with PWS have not received appropriate hospital health services because the provider has not understood the unusual medical features of, and medication responses in, a person with PWS.
Recommendation:
The NDIA must be proactive with mainstream health services to ensure that staff are properly educated about PWS.
Also, the NDIA must be proactive with mainstream health services to ensure that menu access in hospitals is suited to the current health status of the patient, and does not make an overweight person heavier. Hospitals should be demonstrating what healthy eating looks like, by limiting choices on the menu, and supporting menu choices, based on individual circumstances, when the patient can’t make suitable choices for themselves.
6. Disability support has not been available during hospital stay
It is unclear where the responsibility of the disability service provider ceases when a Participant is admitted to hospital as an out or inpatient. Some people with PWS need their support worker to be with them during parts of their visit. This is to ensure the Participant can effectively access the health service, and have continuity of holistic care. This is particularly important if the patient does not have informal supports available. PWS patients can suffer from intense anxiety in hospital surroundings, leading to challenging behaviours that need to be managed by someone skilled in PWS support. Hospital visits may have to be duplicated, or treatment can be sub-optimal if the person with PWS does not have direct disability support in the facility. Hospitals have been shown to deliver poorer health services to someone with PWS if trained disability support is not there with the patient.
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Recommendation:
The NDIA must allow funding in the Plans of people with PWS to have a support worker present with them in hospital, at relevant times; The NDIA cannot assume that the PWS adult can make proper use of the health service if they are left by themselves to negotiate the service.
- Modifications to houses have been delayed due to disputes between authorities about who is responsible for the cost
At times, home modifications have been identified to help keep the person with PWS safe. However, the NDIA and the landlord argue about who will bear the cost. The Participant should not have to wait for safety modifications whilst the authorities bicker.
Recommendation:
Limited emergency funding should be set aside by the NDIA, and/or a suitable fast-track process put in place to enable home safety modifications to be done in a timely manner, and paid for by the NDIA. The NDIA can then exercise their option to seek reimbursement from the landlord.
- Incorrect advice given by Planners about services
People with PWS are being given incorrect advice about what services can be claimed, for example purchasing pre- made meals, even when the meal provider is clearly an approved NDIS provider.
Recommendation:
Further training of NDIS and LAC Planners is needed to improve their knowledge about the typical support requirements for people with PWS.
Also, the NDIA must recognise that PWS is complex, causing the files of Participants to be large and the evidence for multiple facets of the disability, extensive. This means Planners who are assisting people with PWS must be given extra time to review and understand all the information given to them about the person with PWS.
- A flawed process to access funding for Specialist Disability Accommodation, causes the Participant lack of choice and control and constrains innovative solutions
All people with PWS are likely to qualify for Specialist Disability Accommodation (SDA) funding, should they chose to apply. Yet SDA funding is being denied to people with PWS, or the funding structure and process is so obscure that choice and control is unavailable to the participant. Furthermore, parents have indicated extreme anxiety in relation to the very real possibility of their adult children with PWS being evicted from SDA due to extreme behaviours of concern. As a result, parents of people with PWS are prepared to invest in SDA to enable the ‘tenancy for life’ concept that will guard against eviction.
Participants with PWS will require a specialised ‘robust’ build, with a breakout room and modified kitchen (invoking a restrictive practice), as minimum requirements. This is based on Australian and international evidence showing that people with PWS are at risk of dying unless they have specialised accommodation when, as young adults, they need to move from the family home.
PWSA commends the Joint Parliamentary Standing Committee for recommending that the NDIA enable pre-approval of SDA building plans, however, this pre-approval is just 50% of the equation.
Our members are experiencing difficulty in gaining finance approval to develop SDA homes. Banks want to see Participant SDA pre-approval as well as house design pre-approval. Participant pre-approvals of SDA seem
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impossible to obtain, resulting in unacceptable risk for banks wishing to finance families of people with PWS who want to participate in developing SDA for their children.
Recommendation:
That Participant SDA pre-approval be available, and explicit, for individuals that qualify, to enable planning, design and finance approvals. This will allow families to become involved in developing SDA, thereby enabling ‘tenancy for life’ and to stimulating expansion of the SDA market.
- Gaps and delays are emerging in service delivery and provider monitoring, now that complex Participants no longer have Case Management
Adults with PWS need Case Management. They have a myriad of impairments with intense challenging behaviours, at unpredictable times. This complexity means holistic support is important. Fragmentation of services has been found to have adverse consequences on service recipients3.
An NDIS funded role is needed that has responsibility for the Participant’s welfare. That includes all dimensions of the Participants life (eg social, emotional, accommodation, health monitoring or financial difficulties), which may also need advocacy at times. The Support Coordination role is inadequate. It does not address welfare. It is just broker and education services, that are intended to reduce over time, as the Participant “builds capacity”. Many people with PWS face more crises in their lives than other disabled people. In the past, the safety net services delivered by a Case Worker have resulted in better outcomes for adults with PWS, particularly when needed suddenly.
Furthermore, people with PWS need assistance to find and maintain specialised accommodation. The NDIS can offer specialised Support Coordination for housing, until their accommodation needs are met. Members have found that, when specialist Support Coordination is needed, the NDIS then cuts back on regular Support Coordination, for the other aspects of their life. The two funding types should be offered in parallel. It is nonsense for the NDIA to assume the Participant puts their everyday community access activities on hold whilst they are looking for accommodation. Accommodation specialist support coordination should not preclude the Participant from getting the full standard support coordination to assist with all other activities that continue, regardless of their accommodation status.
Recommendations:
- Sufficient support coordination hours should be made available to enable both service brokerage, capacity building, education coordination, AND specialist SDA support coordination.
- A new function of ‘Case Management responsibility’ should be added to the NDIS for complex, challenging clients.
- PWSA is the most expert in the country on the topic of PWS management, in every setting. However, limited provider registration categories have precluded the PWSA from registering with the NDIA.
PWS Australia has the ability to offer specialised training services under the NDIS for this rare condition. It can assist those with PWS, their families, support organisations and mainstream community entities. However, the current provider registration categories are effectively excluding PWS Australia from contributing to this important training need. This is helping nobody, and raises the risk that an inexperienced, but large, well-resourced for-profit organisation will seek to fill the gap. That could easily result in sub-standard training services for PWS providers, and poorer outcomes for PWS Participants.
Recommendation:
3 The Fragmentation of Social Work and Social Care: Some Ramifications and a Critique. Retrieved from https://www.researchgate.net/publication/284005458_The_Fragmentation_of_Social_Work_and_Social_Care_So me_Ramifications_and_a_Critique
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The NDIA should develop an additional provider category that accommodates person and family support organisations to become providers, in relation to delivering specialised education and training.
Conclusion
The PWSA is very committed to supporting people with PWS. The PWSA is an expert organisation for PWS knowledge and management skills. It is the peak Australian body for families, supporters and providers who want to help people with PWS live a more ordinary life, and reach their goals.
As such, the issues that have been raised here cover a broad range of concerns. The recommendations look to address systemic problems with the current NDIS model as they impact people with PWS.
Further information about Prader-Willi Syndrome, interactions with the NDIS and support resources can be found on the Australian website, www.pws.org.au
The PWSA thanks the Joint Standing Committee for considering the matters in this Submission and looks forward to seeing improvements in the NDIS model as a result.
Thank you.
James O’Brien
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