Huntingtons Queensland’s experience with NDIS planning for people impacted by Huntington’s disease | External submission

Submission to the Parliamentary Inquiry into NDIS Planning 5 September 2019

SUMMARY

This submission provides information about Huntington’s Queensland, and our client group: people impacted by Huntington’s disease: an incurable, hereditary neuro-degenerative disease characterised by symptoms including cognitive disturbance, motor abnormalities and psychiatric features. It then offers:  Observations from our frontline staff who are involved in pre-planning and preparation of evidence for submission to NDIA planners; and  The personal experience of a family carer, whose wife died of Huntington’s disease some years ago, and who is supporting his adult son through the NDIS planning and service landscape at present.

We also offer some insights into:  The complexity of Huntington’s disease and the challenges this presents in working with the NDIS on planning and access to services; and  Why the NDIS’s philosophical approach (ability vs disability, focus on wellness and connection) does not always meet needs of people whose disability includes significant, ongoing degeneration and decline.

Finally, we offer some solutions relating to:  A need for greater flexibility when assessing complex, degenerative disabilities;  Improvements in education and training for planners; and  A plea for planners to get a full understanding of the participant’s circumstances before making decisions that affect their future health, wellbeing and quality of life.

At the outset, Huntingtons Queensland wishes to note that while the National Disability Insurance Scheme clearly has its challenges, it has also given many people with Huntington’s disease an opportunity to access funding and support that has previously not been available to them – in many cases, for the first time ever.

We also note that the effectiveness of NDIS planners and the planning processes are impacted by other systemic issues such as:  Lack of coordination and integration between the disability, health, welfare and housing sectors, including access to mental health services; timely physical, cognitive and medical assessments; and access to allied health services;  Shortages in trained staff willing or able to support people with very complex needs;  Difficulties in accessing suitable and affordable accommodation (often resulting in the inappropriate admission of people with Huntington’s disease to hospital and aged care facilities); and  Lack of support for people facing family breakdown, including domestic violence, poverty and often inter-generational social and financial disadvantage.

ABOUT HUNTINGTON’S DISEASE (HD)

Huntington’s disease (HD) is an incurable, life-limiting, hereditary neuro-degenerative disease characterised by symptoms including cognitive disturbance, motor abnormalities and psychiatric features. It affects both men and women and results in the gradual and catastrophic loss of ability to carry out everyday tasks, with individuals becoming increasingly dependent on others over the course of the disease.

The age of onset is highly variable, with an average age of 30 to 45 years. The onset and progression of Huntington’s disease are influenced by environmental and genetic factors. Life expectancy is approximately 15 to 25 years following the onset of symptoms. The impact of Huntington’s disease is multi-generational: each child of a parent with HD has a 50 per cent chance of inheriting the disease.

There is no cure for Huntington’s disease, although medications are available to treat some symptoms.

PREVALENCE OF HUNTINGTON’S DISEASE

It is estimated that up to seven people per hundred thousand are affected by Huntington’s disease. In Queensland we believe there are some 300 families impacted by HD, including the following groups that are registered as clients of Huntingtons Queensland:  245 people who are gene positive (ie. positively diagnosed as having the faulty gene/disease)  110 people who are gene negative (ie. have been through the genetic testing process and are related to someone who is gene positive)  18 people who are at risk (ie. who have a parent with Huntington’s disease but have not been tested).

COAG’s Disability Reform Council Performance Report (December 2018) reported that there were 436 active participants with an NDIS plan in Queensland in 2018-19 in the ‘Other Neurological’ category, which includes people with Huntington’s disease.

ABOUT HUNTINGTONS QUEENSLAND

Established more than 40 years ago, Huntingtons Queensland1 is a not-for-profit organisation based in Brisbane. It is the only organisation in Queensland dedicated to the support and wellbeing of individuals impacted by Huntington’s disease. Our services include:  Providing information, education and training about Huntington’s disease to individuals, families, service providers and other agencies;  Providing non-clinical counselling and other support for individuals and families;  Advocating for the rights of people impacted by Huntington’s disease; and increasingly  Assisting clients to understand, plan for and access the National Disability Insurance Scheme.

The majority of our services are funded by donors and supporters, with additional assistance from Queensland Health and periodic grants from trusts and foundations.

Huntingtons Queensland is NOT an NDIS provider.

OUR TEAM’S EXPERIENCE IN WORKING WITHIN THE SCHEME

Outlined in the section below are comments provided by Huntingtons Queensland’s two frontline staff, our Huntington’s Disease Advisers, whose role includes:

 Helping individuals to understand the NDIS and how they may access the Scheme;  Assisting people to gather evidence, prepare for planning meetings, and attending meetings with them;  Advocating for the participant’s needs once plans have been approved (or rejected);  Liaising with NDIS-funded service providers on behalf of our clients as required; and  Helping clients to navigate other services/agencies to manage their health and wellbeing needs.

1 The Australian Huntington’s Disease Association (Qld) Inc. ABN 45 130 081 598

HD Adviser A has worked in the disability sector for more than 15 years. She has been providing advocacy and education for people with Huntingtons and their families for more than four years, including supporting them through the NDIS planning process since the initial roll out in Queensland.

HD Adviser B, a trained social worker, has more than 22 years’ experience in working with families impacted by Huntington’s disease. She has also worked with our clients and families to access the NDIS since its rollout in Townsville in 2016.

HUNTINGTONS QUEENSLAND – RESPONSES TO THE INQUIRY’S TERMS OF REFERENCE

A. The experience, expertise and qualifications of planners

HD Adviser A

Throughout the last four years of planning meetings it is clear there is no consistency in the experience, expertise and qualifications of planners. I have not encountered a planner with expertise or meaningful experience in Huntington’s disease. Many planners associate Huntington’s disease with Parkinson’s disease or MS. This lack of knowledge or understanding means planners risk a clear misrepresentation of the complex needs of a person affected by Huntington’s disease, specifically with regards to cognitive function and mental health symptoms.

Even more alarmingly, in the past week we have been contacted by the manager of an NDIS team in South East Queensland who has asked us to support a change of diagnosis for a person with Huntington’s disease (to suggest the person has dementia) apparently so that their care/accommodation needs could be directed in a different direction. The manager confirmed that no clinician had been consulted or involved in the proposed change of diagnosis. We declined and after discussion with the manager we were told the person’s existing diagnosis would stay on file.

B. The ability of planners to understand and address complex needs

HD Adviser A

Lack of knowledge of the complexity and individual needs of people with Huntington’s disease has led to major gaps in services for people with Huntingtons, and has added stress to the experience for participants.

We have been involved in several planning meetings where our staff have had to coordinate the client’s attendance, including gathering paperwork on the day, helping the client to get ready for meetings, driving them to the appointment, getting them into the right office, sitting in the meeting etc – only to be told by the planner that the client “did not need Support Coordination” because “they got themselves here”.

HD Adviser B

The majority of the planners appear to be empathetic and reasonably skilled around physical disability, however I’m not confident they fully understand the impact of impaired executive function, and the impact that an ability to plan, organise, and motivate self has on a person’s functional abilities.

We are aware of cases where Support Coordination was not mentioned as an option during the planning process, and the planner has presumed that a person with Huntington’s disease would be able to use hiring

platforms on their own to find support. The task would be overwhelming, and more than likely any funding granted would sit unused for the year.

I think some of the terminology used by the Scheme is also confusing – including for people without a cognitive disability. For example, several of our family carers believed they’ve had Support Coordination as part of the plan, and have been upset at the lack of support, not understanding that the LAC was not a Support Coordinator and it was up to them to organise their support.

Please also see below an excerpt of a letter that Huntingtons Queensland prepared in support of a client wanting to access the NDIS. It is provided to demonstrate the complexity and impact of Huntington’s disease, and the level of disability it has on the person’s daily life:

[X] was diagnosed with HD in September 2015. [X] has been retired due to ill health from his position with [a Queensland government agency] and requires ongoing support with daily living tasks which is provided solely by his wife. I have detailed below some examples of [X]’s functional impairment but this does not cover all of the impact for [X] and his family.

Cannot prioritise tasks, struggles with sequence and planning. [X] cannot prepare meals, he cannot complete household tasks, he becomes frustrated and panicked when trying to operate equipment such as a mower or pressure hose. [X] is unable to fulfil his role as a parent as he struggles with higher order thinking, he cannot respond to the child’s needs, he cannot problem solve or respond to the needs of the child in a timely manner.

Cannot retain information or follow instructions. By the end of his working career, [X] was unable to complete requested tasks. He cannot manage personal appointments or retain information after a doctor’s appointment, he cannot manage his own medication. [X’s wife] and [X] report that he is no longer able to participate in activities such as water sports as he can no longer remember how, which is impacting his ability to maintain friendships.

Fatigue Management. [X] is exhausted after one hour or less of low activity such as supported garden work, or being out within the community.

Behavioural concerns. [X] is often unable to reason or rationalise in a situation, which causes outbursts of anger and aggression impacting on his relationship with family and friends.

Mental health. I would ask you to review the previously submitted clinical reports detailing [X’s] desperate but failed attempts to return to work.

Movement. [X] has chorea movement associated with Huntington’s disease, which includes violent uncontrolled movement, usually of the arms and legs. As this disease progresses he will lose capacity to mobilize and control his movements, and require ongoing physiotherapy.

C. The ongoing training and professional development of planners

HD Adviser A

Huntingtons Queensland offers free information sessions and we have approached several NDIA offices around Queensland to provide staff with appropriate information and education about Huntington’s disease however we have had no interest from planners and management. We also have detailed resources about HD that would be useful for planners, should they wish to access this information.

D. The overall number of planners relative to the demand for plans

HD Adviser A

Current waiting times for assessment by planners with regards to complex needs is high. We have had cases where people with HD awaiting plans have spent months – some more than 12 months - in a hospital setting and or have been moved to inappropriate nursing home placement in the interim.

HD Adviser B

It seems there may not be sufficient planners available for the number of plans required. The delay between access been met and the planning process can be months. The complexity of the NDIS, and the extensive multi-step process of applying, are also barriers to access. We have numerous examples of people not understanding the process, and if they don’t have someone supporting or guiding them they only partially complete the process. I recently visited someone who had received her plan, but she didn’t know what it was, and it had sat there for a month. She also didn’t know how to find herself Support Coordination, and the delay in getting that in place meant more time before the plan could commence.

The NDIS process implies that people have orderly lives with all their reports and evidence neatly filed, and the ability to follow the process unsupported. That is not the case for people with Huntington’s disease.

How do you meet access requirements when you refuse to go to a doctor or any other clinician, but you require support (or your family does)? Who starts the process? We recently learned of one person with HD who has [a provider] coming into her home every week, but no one had registered her with the NDIS.

There is a frequently a gap between registering for access and support actually starting. For example [N] can’t obtain any support from a Community Access Point until she has been refused access – this process could take months. What happens to her in the interim?

A positive is having the LACs to support with the process around meeting access requirements (not that there is anything they tell people that we don’t already know, but I think that it’s beneficial that there is a place/person to go to for guidance/brainstorming in the local area).

E. Participant involvement in planning processes and the efficacy of introducing draft plans

HD Adviser A

Involvement in the planning process can be a significant problem for people who have Huntington’s disease. For example, with the difficulty of getting at-home assessments, planners are not able to get the full scope of a person’s needs. There are also issues where people are interviewed by phone: many people with HD have speaking or swallowing issues which mean they cannot form words clearly, or who may take a very long time to process a question and formulate an answer – which may then not be comprehensible to the planner at the other end of the phone anyway.

F. The incidence, severity and impact of plan gaps

HD Adviser A

Lack of Support Coordination is one of the biggest gaps faced by people with Huntington’s disease. The function of making calls, arranging appointments, following up recommendations, instructing support workers and navigating systems can be something that some people simply cannot do.

There is also a large population of people with Huntington’s disease affected severally by apathy, leading to a standstill in service provision. It is imperative that planners gain a clear understanding of the reality of life for people with significant, complex disability, such as Huntington’s disease, and don’t make judgements or assessments based only on what is presented in the space of a two-hour planning meeting.

H. The review process and means to streamline it

HD Adviser A

The review process is as important as the initial assessment for people with a degenerative disease. While streamlining – or greater flexibility – would be useful, if the process is rushed or a new planner is assigned to a case (and who may be unfamiliar with HD), it is likely that there would be a detrimental impact on the client.

M. Any other related matters Lack of flexibility in managing the planning process

Inflexibility (and in some case irrelevance) in the questions asked as part of the planning process can make life difficult for people with Huntington’s disease. For example, HD is a progressive neurological condition – people with HD do NOT get better, they do NOT have the opportunity or ability to enter gainful employment, their quality of life will NOT improve as their health and ability deteriorates over a period of years. Many planners either do not seem to understand this, or cannot accommodate nuances due to the rigidity in the administrative processes.

Incidents of failure

There is no clear understanding that a major symptom for some people affected by HD is a fractured awareness, and lack of insight into their own condition and needs. It is essential that planners take into account the evidence presented by people around the person and that the planner gains insight from seeing the person in their own environment due to the person not being able to correctly represent their situation.

We have also had several incidents of people with Huntington’s disease being accepted into the Scheme, being assessed as not being eligible for, or denied, Support Coordination, and then being left for 12 months before being able to access any services. At the 12-month point, it is finally identified that they DO need Support Coordination because no funds have been used. This is detrimental to a person’s health and wellbeing and the majority of times has led to a faster progression of the disease.

Future planning

The experience of living with Huntington’s disease may have an impact on the person’s future planning and funding under the Scheme.

People with Huntington’s disease face significant challenges even after their plans are approved. Even though services may be adequately funded, the person’s cognitive and behavioural challenges may mean that services cannot actually be delivered – for example, it is not uncommon for our clients be unable to access properly trained workers, or to refuse service/entry to their homes, or to forget that a service provider is coming. This presents an inaccurate picture at review time – for example, it may appear that the service was not actually required, which may result in a reduction in funding or changes to the person’s plan, when in fact their level of need remains high and may even be increasing.

FAMILY CARER - RESPONSES TO THE INQUIRY’S TERMS OF REFERENCE

The comments below are from [G], a highly experienced family carer, EPOA and advocate for his son [T], who is an NDIS participant. Due to the complexity of his needs and lack of appropriate services, [T] is an inpatient at a South-East Queensland hospital, where he has been for much of the past two years.

D. The overall number of planners relative to the demand for plans The planning process for [T] was done by the NDIA staff as he was resident at [residential facility/local hospital] as this is the current policy. I have no problem with this. The key issue from my experience is the choice of the supplier for the service of Support Coordination. This is critical for the NDIS to meet the needs of those with the disability.

E. Participant involvement in planning processes and the efficacy of introducing draft plans For ALL Huntington’s disease participants there needs input from family and HD professionals, as in general the planners have no experience in neurological degenerative diseases like Huntington’s disease. People with HD have cognitive problems and cannot handle complex questions so it is imperative that people who understand Huntington’s disease MUST be involved.

G. The reassessment process, including the incidence and impact of funding changes This has happened with [T]’s plan as the second round included new items such as Transport.

H. The review process and means to streamline it I was happy with the roll-over and review.

K. The circumstances in which longer plans could be introduced With Huntington’s disease, I believe the plans should remain with a review every 12 months. [T]’s plans have been six-monthly and I agree with this as the paramount item is to find SAFE, SECURE and SUPPORTED accommodation which is a major issue for those with complex needs.

M. Any other related matters There are two issues:  Interaction with NDIS providers and Queensland Health and Housing  Lack of accommodation specialist disability accommodation (SDA) and supported independent living (SIL).

SOLUTIONS

A. Greater flexibility when assessing complex, degenerative disabilities It is clear that the NDIS is not geared up for participants with complex, degenerative disabilities, especially where cognitive function and planning skills are impaired. Long delays in the assessment process are also very common, which has a detrimental impact on the person and adds burden to the public purse.

Huntingtons Queensland recommends that:

1 Funding should be provided to recognised community organisations (such as Huntingtons Queensland) to help NDIA applicants prepare for planning meetings. Pre-planning can take many hours and requires detailed coordination, which people with advancing symptoms of Huntington’s disease cannot manage.

Such support would ensure the NDIA planners have all the information required, as well as the applicant being able to have an independent advocate with them. This would speed up the process and ensure plans are in place and implemented as quickly and efficiently as possible.

2 Support Coordination should ALWAYS be considered for a person with complex disabilities such as Huntington’s disease.