Nardy House Inc

Which of the following statements best describes you?

Other – I am representing an organisation – Nardy House Inc. – CEO of an organisation providing services to people with high level and complex physical disabilities

Question 1:
During the first stage of consultations we heard that the vision and the six outcome areas under the current Strategy are still the right ones. Do you have any comments on the vision and outcome areas being proposed for the new Strategy?

The vision and the outcome areas are relevant however in practice inclusion of people with very high levels of disabilities is not happening. The strategy vision and outcome areas do not address needs aside from those people in the median. Very high levels of disability result in poor outcomes in all outcome areas for carers and the person with a severe physical disability (These disabilities are often in combination and the person is sometimes prone). The Strategy vision and outcome areas do not address needs, aside from those in the median range and those with the “voice” to be heard. The strategy needs to listen carefully to the voice of carers and those responsible for people with high level disabilities . There is a particular need for respite that is given outside the home so that the home does not become a service provision point- this might be cheap initially but family isolation and fragmentation results and it is not respite. The family home needs privacy and some people want just to have it to themselves without the intrusion of others. This is particularly so as the the level of severity of disability increases. There is also a real problem keeping children with high level disabilities within the supposed “safe” home environment when all indicators are saying otherwise.

Question 2:
What do you think about the guiding principles proposed here?

Very high level disabilities and people with complex physical and psychological needs need to be priority population. There are some people with disabilities who are not employable is not an option or a goal. There are some people with high level disabilities inappropriately housed or not housed (in the aged care setting or without 24 hour supports). They are a neglected group.

Further people with disabilities in Aged Care are stuck there. Any NDIS package must include the provision for SIL and SDA for Adults and Board and Lodging supports (STATE FACS) and care supports (NDIS) for children in order for the person and their carers to have a choice to leave the setting otherwise they are warehoused there. This situation has remained unchanged for decades and while some cursory moves have been made ( YPINH Victoria) there is a whole cohort of people of all ages with complex and high level needs that is not treated humanely or sensitively. This Strategy Paper and resulting recommendations must improve on this situation and address highest level of needs as a priority not a “tack on”

Question 3:
What is your view on the proposal for the new Strategy to have a stronger emphasis on improving community attitudes across all outcome areas?

It is not the community that has the problem it is Governmental Agencies not acknowledging high level needs as a priority population.
The community, particularly carers know what it takes to care for person with high level needs

Question 4:
How do you think that clearly outlining what each government is responsible for could make it easier for people with disability to access the supports and services they need?

For people with high level disabilities there are crossover points between Agencies such as Health and NDIS…their disabilities impact their health. At present there is a great deal of buck passing and little acceptance of responsibility by individual agencies. If the way forward is to be better people with disabilities have to be assured their care will be holistic and all aspects of care will be funded- not ignored because some other agency is responsible.This is simply funding manipulation but it is very serious for the person with a complex disability and their carers. The complexity overwhelms them and they give up. Their care is disjointed, if it exists at all, and we see instances of abuse and neglexct

Question 5:
How do you think the Strategy should represent the role that the non-government sector plays in improving outcomes for people with disability?

NGOs , especially those dealing with very high level disabilities have numerous reporting mechanisms and oversight measures. There are also the auditing provisions of the NDIS Commission applied at the management level.The same oversight is not applied to the in home care of individuals with complex needs that is open to exploitation and neglect via the farming out of services by Agencies.The Agencies have to ensure the level of care espoused is actually received and only they can do that.Support workers not undertaking their roles within the home, support workers not being paid for services because of holes in NDIS plan funding, agencies incapable of back filling absentee workers for a variety of reasons.. all lead to people with very complex needs, who cannot report, falling through provision cracks.

The implementation of video links at Agency and home level may be a way to ensure the support worker is actually there but as far as doing their work an invasion of privacy is occurring. Privacy is secondary however if neglect is occurring.
There may be some way of placing filters during personal care the ensures care is identified and given. Tick boxes are easy but totally unreliable and the person’s care monitor requires observation by management in a reliable format

Question 6:
What kind of information on the Strategy’s progress should governments make available to the public and how often should this information be made available?

Reporting is only effective if it is acted upon. The reality appears to be that reports are done by Service providers and Service Coordinators at great length only to sit gathering dust. The amount of paperwork associated with profound physical disability is immense: doctor’s reports,specialist descriptions, programes for health maintenance and provision etc. yet it appears to be disregarded when funding allocation is made. The greater the need the greater the funding requirement does not appear to be a basic tenet and logical outcome.Reporting only counts if it is responded to .

Question 7:
What do you think of the proposal to have Targeted Action Plans that focus on making improvements in specific areas within a defined period of time (for example within one, two or three years)?

A targeted Action Plan for removing young people (indeed all people with disabilities) from the Aged Care Setting would be a step forward. This step has not been taken. People in the Aged care setting need appropriate supports from NDIS and Health Agencies to leave the setting. SDA, SIL must be in their plans and contingencies for SIL and SDA should be in the plans of any individual in danger of such a placement. Children with profound disabilities need careful monitoring within their homes to ensure they are safe… they cannot report and the FACs Officers with oversight are often overwhelmed by need. There needs to be an acknowledgement that home is not always a good place to be and there needs to be a re-establishment of the VOOHC register (by FACs) to ensure responsibility is accepted) to cater for the needs of children at risk.

Question 8:
How could the proposed Engagement Plan ensure people with disability, and the disability community, are involved in the delivery and monitoring of the next Strategy?

People without a voice cannot engage. They are dis empowered. People with complex physical disabilities need representation( they do not have a voice) on any Engagement Plan initiatives. People with complex needs must be seen as the highest priority. They have the highest real costs and do not receive an appropriate share of the funding allocations as determined by many Agencies including those advocating on behalf of people with moderate and mild disabilities.

There needs to be a resetting of strategies for this highest level of need. There is a perception in the community that high level needs people get high priority . The perception is far from the truth. Distrust of Government Agencies abounds at the present time because priorities are skewed but not to those in greatest need

Question 9:
Is there anything else you would like to share about the ideas and proposals in the position paper?

Prioritise the disability sector appropriately with those with the most complex and severe disabilities receiving priority funding.
Ensure that the sector is adequately staffed and the development of the workforce is enhanced. The workforce is under skilled and there are LAC team members making decisions related to care of individuals with complex needs that are inappropriate and may be dire in result