Experiences of residents lacking choice and control in NDIS-funded care | External submission

Submission No 185

INQUIRY INTO IMPLEMENTATION OF THE NATIONAL DISABILITY INSURANCE SCHEME AND THE PROVISION OF DISABILITY SERVICES IN NEW SOUTH WALES

Name: Name suppressed Date Received: 8 August 2018

Partially Confidential

Submissions regarding the Provision of Disability Services across NSW

(a) the implementation of the National Disability Insurance Scheme and its success or otherwise in providing choice and control for people with disability.

One of the residents of used to work at a Licenced LowCare Facility previously operating in She reports the following for these submissions:

“As an ex-employee of 2010-2012) I had first-hand experience of how would come once a week to pick up 8-12 residents for a day out picnic. would have received funding for all 70-80 clients, yet only chose to cherry pick the very low care / easy going clients for outings. Similarly, , would only take 3-4 clients to Respite Care once a week for a games / activity day, leaving the other 70-75 behind, they would have received funding for all the clients.”
Under the NDIS, the control remains with the service providers not the people requiring the service
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   i)    As per 26 July 2018 Article where                       , a 34year old lady with care needs
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wasabandoned by at has cerebral palsy and type 1 diabetes and was accepted as a client by earlier this year.
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   ii)    The funding is provided with no follow up on the provision of services –            has
funding allocated for day programs (computer use, cooking class, day trips) yet no regulator
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comes round to spot check if these services are being provided to her, again limiting her quality of life. *** Note 1
“IAC advice on ‘choice and control’”

“The centrality of choice and control - Advice to the Council from experts reaffirmed the lack of choice and control in many aspects of the disability services in Australia and the imperative to give substance to this legislative mandate in the operations of the Scheme. There are numerous ways of framing the domains of choice. The Council found the definitions of these domains offered by Ms Belinda EpsteinFrisch helpful. She identified three categories of choice: (i)Pervasive choices (affect significant milestones in a person’s life and their aspirations); (ii)Lifestyle choices (connected to a person’s identity …and how to spend spare time) and (iii) Everyday choices (what to eat, what to watch and type of care )

… The United Nations Convention on the Rights of Persons with Disabilities (the Convention), ratified by Australia in July 2008, requires ensuring participation for people with a disability on the same basis as all people… having the opportunity to participate in economic and social life on the same basis as all people, and the right of the individual to make choices about their life (Article 19). *** Note 2

… Disability Support Organisations - Another critical contextual factor is that choice needs to occur within the context of financial sustainability and equity amongst participants with similar levels of disability. …Conclusion - …There are a number of challenges for achieving genuine choice and control for participants in the Scheme…The commencement of the Scheme was predicated on the wishes and

aspirations of individuals being taken into account. … while also meeting the financial sustainability obligations of the Scheme.

(b) the experience of people with complex care and support needs in developing, enacting and reviewing

NDIS plans.

As an ex-employee of                         2010-2012) the                neighbour

also hadpersonal experience on Support Plan reviews: “Plans were reviewed, adjusted and implemented by GPs, health planners and with very little contribution by the client with complex support needs or the staff attending to them every day at i.e. decisions should be made with the client and their family/regular staff that know how their needs will be best met.”

A National Disability Insurance Agency (NDIA) spokeswoman said the scheme was never intended to replace other government support systems, such as the mental health system… Report author Jennifer Smith-Merry, of the University of Sydney, warns the NDIS risks leaving gaps in support services. She said existing support services were being closed and their funding withdrawn on the assumption that they will be replaced by NDIS-funded supports. What is significantly worrying is that at full rollout the scheme is only designed to meet the needs of 64,000 people with severe mental illness, yet existing services are being closed and funding moved into the NDIS,” Smith-Merry said. “This means that many people are going to miss out on the services they need….given there are an estimated 690,000 Australians with a severe mental illness.” ***Note 3

“Families and service providers are prevented from contributing in the NDIS planning process,

the report said, and expert assessments are often ignored. Participants are not given an opportunity to review their support plan sufficiently before it is signed off. Disability sector risks losing volunteers over NDIS uncertainty…The report warns the NDIS transition is having significant ramifications for groups providing mental health services. Organisations specialising in psychosocial disability are “collapsing, merging and selecting not to engage with the NDIS” because the government’s costing structure is unworkable.” *** Note 4

(c) the accessibility of early intervention supports for children,

The Early Childhood Early Intervention (ECEI) is meant to support children aged 0-6 years who have a developmental delay or disability and their families/carers.

I would suggest the government continue NDIS funding for children through programs provided by below organisations rather than putting children and young adults in group homes with older clients: Bridges for Learning; Learning to Shine; Allied Health Services

(d) the effectiveness and impact of privatising government-run disability services,

*** Note 5 refers to an ABC article released 18 April 2015 titled “Calls to halt privatisation of disabled care homes in WA until more safeguards against abuse put in place”

“There are calls to halt the privatisation of group homes for disabled West Australians until more safeguards are in place to protect residents from abuse. A Senate inquiry held in Perth last week heard of instances of people with disabilities being raped, beaten and neglected by carers in group homes. WA’s Community and Public Sector Union (CPSU) said it had heard of instances in which employees in privatised disability group homes were blocked from reporting alleged abuse. “[One employee] was asked to withdraw her complaint by her employer, then resigned and went to make an official complaint where she was told that was not possible as she was no longer employed by the organisation,” the CPSU’s Toni Walkington said. “Other staff have reported that even after they have completed a critical incident form and an action plan to address the issue, they do not get any feedback to find out what, if anything, has happened. Inquiry hears of rape, neglect and abuse of those with disabilities. The disability advocacy group Bolshy Divas tells an inquiry that accountability is lacking in the system and abuse cases “go nowhere”. “Clearly the processes and procedures are falling down in the non-government sector.”“

(e) the provision of support services, including accommodation services, for people with disability regardless of whether they are eligible or ineligible to participate in the National Disability Insurance Scheme,

i) Respite Homes or Group homes should be located near medical services and shopping centres for the clients, and not amongst residential areas with limited services. Examples are the apartments and homes opposite and the gated communities near

(f) the adequacy of current regulations and oversight mechanisms in relation to disability service providers,

As an ex-employee of 2010-2012) the owner suggests: Advocates such as PWD (People with Disabilities) were a non-intrusive, yet helpful service when I worked at if they could receive more funding for verseeing the services, providers would feel comfortable and more importantly the clients’ needs would be met if regulated

(g) workforce issues impacting on the delivery of disability services,

In the majority of cases, the industry unfortunately does not attract the most ethical or caring people in the workforce, rather it attracts people who cannot get a job elsewhere, especially in regional areas such as the and

(h) challenges facing disability service providers and their sustainability.

It’s the segregation of people with needs that increases their risk of being neglected. is not a sustainable vehicle except to make such organisations highly profitable by receiving funding and not providing the service.

      was taken on by                                 , but then abandoned months later when they were

unable to manage even her diet to care for her, yet when did they stop receiving funding for her – when they first dropped to the hospital. or when the article came out in The Australian?

Updated 20 Dec 2013: A mother has told of how her intellectually disabled daughter was forced to go to the toilet in a bucket after being locked in a garage in a Sydney group home. said staff locked her 25-year-old daughter in the garage for about two hours in September this year in an attempt to manage her behaviour. The case is one of a number uncovered during an ABC investigation into group homes, which has found reports of serious incidents of physical and sexual abuse in NSW and Victoria.
Updated 20 Nov 2013: A former disability care worker has been sentenced to 18 years in prison for sexually assaulting several disabled people under his care…pleaded guilty to 12 sexual assault charges, including eight counts of rape in their supported accommodation homes run by the disability service provider . All three women have cerebral palsy and require 24-hour care.
22 Jun 2016: Parents of disabled people in group homes say they are concerned a culture of covering up serious incidents and avoiding police scrutiny pervades the sector. lived for most of his 45 years in residential care. During his time in group homes, he was sexually assaulted by another resident. His mother, remembers other incidents when his collarbone was broken and also his foot. It was at this group home near where died in 2014.