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Engagement Context:
- Round table, group discussion.
- 16 participants
- 3 DRC staff
- 3 language groups, Chinese, Madeiran & English The discussion was based around the following question:
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What has been your experience accessing the services, support and care you need?
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Have you been able to participate in the activities that you want to (E.g. employment or recreational)
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What would make life better for you and/or your child with disability?
Support
The support networks are very important to help people with disability. They provide the ability to assist people to do the things they might like to do.
Participants reported a lack of consistency by support providers/ workers. Organisation providing support would cancel workers at short notice and provide no replacement. They reported no penalties for the organisations that cancel but if an individual or family need to cancel support unless they could provide 24hrs notice they would still be charged or penalised for the cancellation.
Example provided:
A lady requires help with replacing a catheter, the nursing service is not consistent they do not always attend when they should and will change schedules to suit themselves, with little considerations for the needs of the lady and her health.
Language barriers
A CaLD lady who has a son with disability. English is her second language and all communication with her from government agencies are in English. She has to rely on help to have these translated (often by support workers) and the time taken to get this done can created problems. If the matter appears urgent is can be hard to find someone to translate for her quickly.
The language barriers can also affect employment opportunities for children.
Example: When children graduate from high school they still need some assistance to find employment but as the family speak little English it is hard for them to assist employers/ employment agencies understand their child’s disability and the adjustments needed.
Employment
The ability for people with disability to gain employment is very beneficial to the family unit. It provides social engagement for the individual while giving family members some time to address and manage the other elements for family life.
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Employers don’t have enough information available to them to understand what is involved or required to employ a person with disability. I might not be as hard as they think but there is a lack of easily accessible information.
Disability organisations could help networking with employment organisations to make it easier to connect willing worker with disability employment opportunities.
Community
Personal experience: A lady with a daughter with intellectual disability.
When the lady goes shopping with her daughter she feels people are making judgements about her parenting when her child might do something different or out of the ordinary. People can be quick to judge without knowing the full situation and what the family are trying to achieve. More understanding is needed and some understanding of the situation.
Children with disability and their families want to go to all the same places as other children and families their age do but many of these facilities are not set up to accommodate children with disability.
NDIS
People don’t believe the NDIS funding is always used in the best way possible. Time/ money is lost in clerical activities or change over of staff. I was reported that people can regularly have a different support person attend who is not familiar with the needs of the person with disability. Time is lost upskilling the new support worker.
The system of NDIS has created a high cost base, while there is a scale of costs, most service providers go to the top of the price range for the service they provide.
Many people believe that often the needs of the person with disability are not truly being looked at with assistance being assessed in a more generalised way. This is what has been done before for people with this disability mindset is being used.
Cost for services provided and equipment are always high and it feels to the participants that providers are taking advantage of the face that people have NDIS funding to covering the cost so value for money is no longer important.
Housing
Government housing takes a long time to obtain - 6 years for one lady.
Lady requires help with catheter, the nursing service is not consistent they do not always attend when they should and will change schedules to suit themselves.
Recommendations. What would you like to see changed in the system to enable a better life?
Allow funding people with disability as a family unit
Parents need some allowance as part of the NDIS to help the family/ parents to supporting the family and person with disability. Funding is all focused on the individual and the paid (professional) support able to be provided. In many families that have children/ family members with disability a
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parent or family member needs to give up work and they become one income families. Funding to support the family member providing regular care will help support the family unit.
More acknowledgement that family members or often the carers and provide a lot of unpaid support and activities. Being able to have some of this covered by NDIS would reduce some of the burdens on family as much of the expense is additional to what other families would be exposed to.
Activities that people with disability are taken to often cost the family member providing support. It is not recognised that they are there supporting the person with disability. This becomes an out of pocket expense that they can’t recover. A better fee structures for carers and family member of people with disability that recognises that they are not there for themselves, they are supporting the person with disability and without their attendance the person could not attend at all.
Better options for transport and activities
For people with disability to have a better variety of activities during the day. Some participants feel that care house have been reduced due to cost over time, so this has impacted individuals’ actives and social activities.
Better transportation options and availability. While this can be included in NDIS packages, finding the transport can be difficult and for it to be available when needed. The concern is that if the transport budget is not used it gets reduced when the plan review is completed.
As part of activities provided opportunities to develop life skills should be included, not enough effort is put into helping people live more independent lives.
NDIS overhaul.
NDIS is confusing, and when questions are asked, there is little help provided and you have to chase for answers.
Service providers shouldn’t be able to cancel service ‘last minute’ without any attempt to provide a replacement.
Individuals/families of people with disability should not be subject to cancellation of care requirements like 24-48hrs prior notice.
Housing
The should be houses (share house) for youth with disability to start to learn some life skills and have a way to migrate to independent living.
Community work, create social capital
People need to understand that while PWD might not be able to contribute in some ways, there are many other ways that they can contribute in the community. People need to be more open to what they can do and not be so quick to dismiss.
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