integratedliving NDIS Consumer Focus Groups

Report prepared for integratedliving by
the Centre for Disability Studies
Team members: Patricia O’Brien, Meaghan Edwards & Friederike Gadow
May 2013
Agreement ID: 1-N02GOF Schedule ID: 2-21195T
integratedliving Australia engaged the Centre for Disability Studies (CDS), Affiliate of the Sydney
Medical School at the University of Sydney, to facilitate three consumer focus groups in which people
with disability, their families and carers were asked how they envisage receiving person-centred support under the NDIS. The focus groups were held on the following dates in the following locations:
Rockhampton, QLD - 07.05.13
Participants: 2 family members, 4 service providers
Location: Local library.
Singleton, NSW - 20.05.13
Participants: 12 people with disability, 3 family members, 6 service providers/support
Location: Local club.
Beresfield, NSW - 21.05.13
Participants: 4 family members.
Location: Local Christian centre.
At each focus group, attendees were provided with an overview of the implications of the NDIS (“What
is the NDIS about?”) and it was explained that integratedliving is now listening to their consumers to
find out how people would like to be supported under the new scheme. Participants were informed
that the focus group would be voice-recorded as a means of data collection and they were asked to
indicate their consent by signing a consent form. All participants agreed to sign.
In facilitating the focus groups, a member of the CDS team introduced stimulus questions, with each
question comprising of a number of probes. Copies of these stimulus questions are attached to the
report in Appendix B. During the discussion, another CDS team member graphed the responses to
capture key themes in the discussion and regularly reported these back to the participants to ensure
that what had been captured truly reflected what people were saying. Samples of the graphs are attached to the report in Appendix A.
In the following, major themes emerging in response to the stimulus questions are listed for each location. These themes of common issues and opportunities will be further discussed in the Discussion
of this report (Section 3).
Goals and new activities
Participants indentified several barriers to pursuing goals including a long wait for services and a lack
of appropriate fit for people with disability in mainstream services such as schools. Participants were
eager to discuss a variety of staffing issues which they hoped might be addressed by the NDIS. More
training for staff, better pay and incentives and a general improvement in the perception by the general community of the role of support staff might assist in increasing the number of quality staff available, especially in rural areas.
Participants wondered whether families might be able to be staff under the NDIS and whether further
funding would be provided for staff training and staff recruitment. Issues arose related to safeguards
for people using non-specialist staff such as piano teachers.
Participants agreed that in order for people to achieve their goals, person centred plans need to be in
place that leads to achievement.
Community and mainstream services
Agreement ID: 1-N02GOF Schedule ID: 2-21195T
Under the NDIS, participants indicated that they would like to see more collaboration and linking of
services, perhaps in the form of communities of practice that could meet and exchange information.
These communities would include families and service providers and people with disability. This might
also take the form of collaboration or the introduction of an organisation or service that would act as a
connector between people with disability and the wider community.
Participants identified that in general, accessibility to the community is currently a challenge, such as
inaccessible transport and inaccessible buildings as well as the complex process in accessing support
currently in place in the DSQ. These issues were identified as priorities, and equity of access, inclusive of people from aboriginal communities was stressed.
In the discussion it was confirmed that alternative therapies will be eligible for funding under the NDIS,
with service providers such as integratedliving being able to provide case management to assist in
Choice and control
Participants wondered how service providers would advertise to consumers in a competitive marketplace under the NDIS. Participants suggested that a services expo might be an appropriate way of
addressing this. There were also questions around how families would manage the purchasing of services and the time commitment associated with this. Concerns that were discussed related to a market shift with consumers valuing low price over of quality of service.
It was further acknowledged that people with disability will require support in making decisions to
“know what choice to make when they don’t know what the choice is”. To realise this, there will have
to be staff training in supported decision making.
Participants further discussed the implications of choice and that staff as well as service providers will
need training to manage risks around making choices.
There was agreement that with the NDIS there will be a new mindset, as the power will lie with the
consumer. Participants raised that “old-style” thinking will have to be shifted, but acknowledged that
there are no easy answers in instigating this.
In terms of financial management of individual packages, participants suggested that collaboration of
families and services needs to build on mutual respect and structures need to be in place so families
can provide feedback relating to service provision.
The discussion closed with comments about what success would look like under the NDIS:
Understanding and acceptance, bringing people together, winning people over
Happy and committed families
Up-skilling support staff
Choice and power that lies with the consumer
Flexibility in service provision
Meeting individual needs
Involvement and ownership by all Australians
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Goals and new activities
Participants identified that they would like to engage in more leisure activities that reflect personal interests. In order to facilitate greater choice and more personalised options, participants agreed that
service providers need to work together and communicate.
It was raised that service providers need to support people across the life span, from early intervention, through to adolescence and ageing, and that providers need to communicate better to ensure
more seamless support.
Participants also discussed that people need specialised equipment to be able to realise their dreams
and spoke strongly of their hope that this will be facilitating under the NDIS.
Participants identified who was currently providing support in different aspects of people’s lives; this
included family, friends and support staff. They discussed what areas participants need support in,
these included: handling money, transport, time management, daily living skills, independent living,
travelling, shopping.
Participants further identified that under the NDIS they would like to receive support in independent
living, support in accessing education and services in the community, more one-to-one support, more
flexibility, more respite options, more information for families and staff training for better quality support.
Participants expressed their wish for friendships as well as respect and inclusion in the wider community. People also commented that they need physical access to participate in events. In order to make
this happen, people said there is a need for specialised equipment, accessible information for people
with disability and family members. It was further discussed the need for specially trained staff who
facilitate such opportunities, more funding so staff can provide more one to one support and receive
additional training in how to provide community support.
Mainstream services
Participants reported that currently there is a barrier to mainstream services due to a lack of communication between disability service providers, between disability service providers and mainstream
services, as well as lack of information for people with disability and their families/carers.
Participants raised that wish to receive the same level of care in mainstream services (such as hospitals) that they receive at home. In order to access mainstream services participants said they need
appropriate transport. Participants further discussed the need for increased disability awareness in
the community, especially for public service employees such as doctors and police.
In order for people to secure employment a need for incentives and processes was identified so businesses are encouraged to hire a person with disability.
Choice and control
Participants expressed their wish for access to tertiary education for people with disability, but also
leisure opportunities of choice. Family members stressed their need to have a break from everyday
life, to “just get away” and to get a “change of scenery”. They stated that for this to happen they need
better access to facilities, such as hotel and appropriate transport options. People also said that they
generally would like more independence.
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The focus group resumed with people talking about what success (i.e. successful implementation of
the NDIS) would look like to them:
Personal outcomes:
o Peace of mind
o Security
o Having dreams come true
o Getting rid of fears
o Safety net
o Hope
o Choice
o Information
o A balance of what we want and
what we need
o A consistent scheme that doesn’t
get thrown out in a few years
Outcomes for services:
o Accountability for agencies
o Good audits
o More funding towards the service
people want
o Safeguards for people with disability
Goals and new activities
Participants opened the conversation expressing the wish for a listening ear from integratedliving.
They commented on the need for a case manager who could assist with organising equipment,
transport and care for the family member, which would leave more time to spend time as a family.
All participants agreed that they are in need of more respite to be able to have a break from being the
primary carer of their family member. Respite options need to be regular, for example once a month,
so families can plan in advance. It was further discussed that respite options need to be appropriate
to different needs of different people, in terms of level of care, interests and provide opportunities to
spend time with like-minded people.
Family members talked about their hope that the NDIS will alleviate the high costs associated with
equipment costs such as wheelchairs, vehicles, medical costs, therapies and home modifications.
Family members expressed their wish for support through community networks. They spoke about a
desire for independence for their family members; this ideally would be supported through regular visits from a service provider, assistance in managing medication, money management and assistance
with transport. They said that it is important to build capacity so people with disability gain independence in self managing the tasks of daily living. Participants also expressed concern about what will
happen when ageing parents are no longer able to provide support and care. It was discussed that
the NDIS might open up new creative ways of thinking about supported living models, e.g. families
operate a supported living arrangement for their family member by purchasing the appropriate support
services in a private home. This might assist in setting up family members for the future.
Participants expressed that they wished for their family members to have social networks and friendships. They did not feel that their family members were included and commented that they were missing out on life experiences other people/children have, such as attending birthday parties and sleepovers. They said that more assistance was needed to achieve inclusion, in schools through increased
support in mainstream classrooms and in the community through raising disability awareness.
Agreement ID: 1-N02GOF Schedule ID: 2-21195T
Mainstream services
Family members expressed that they felt mainstream services do not cater for individual needs of
people with disability or mental illness. They further disclosed that high medical costs were a burden
to their family and they were concerned about cut offs to services on criteria such as age or intellectual ability. One family member commented on the frustration of having to find the “bucket that fits you”.
Participants also raised that safeguards need to be in place to protect the rights of people when accessing services and support.
Choice and control
The issue of putting safeguards for people with disability accessing services and support in place
formed the primary discussion topic for this stimulus question.
Family members further discussed the need for support in managing individual packages, for example
through the support of a case manager. The commented that they would wish to be in control but
would appreciate guidance and support through a case manager they trust.
The focus group closed with comments from participants about what success would look like under
the NDIS from their point of view. Comments are summarised below:
Living as a normal family
Getting the carer’s independent life back
Having breaks, both for carers and person with disability
Easy access to support through service providers that are connected and communicate
Less pressure and tension, less anxiety
Not having the financial burden
Following through on the hopes and promises of the NDIS
Having support networks
Agreement ID: 1-N02GOF Schedule ID: 2-21195T
Several common themes emerged from the focus groups with a prevalent theme being the current
lack of respite care and a hope for increased access to this under the NDIS. The need for more appropriate services to fit the divergent needs of people with disability and their families was also a major discussion point in all three locations. Thirdly, a desire for an increase in quality staff support to
achieve greater independence in participation, access, choice and control was another key issue addressed in all locations. Implications regarding service provision suited to the individual’s needs and
wants were discussed and should be reflected in on-going professional development for support staff.
Concerns and questions regarding the structure of NDIS funding such as risk management, safeguards and financial and case management structures were also common to all locations and point
out opportunities for a focus in service provision in this area.
Participants in all three locations mentioned a need for better communication among service providers
with more ease of access for people with disability and their families. Strategies such as intensive inter-agency networking, provision of accessible information and closer links with community and mainstream organisations are suggestions to be further explored by the service provider. Access to the
community was a common issue, whether in the form of social networks, meaningful community participation, or physical access such as ramps and transportation. Assisting people to utilise their individual packages to overcome these barriers may play a key role in quality service provision after the
introduction of the NDIS.
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