Carers NSW Biennial Conference

22 May 2015

The National Disability Insurance Scheme (NDIS):

Where do carers stand?

This presentation

• The National Disability Insurance

Scheme (NDIS)

• Carers in the NDIS policy

framework

• Carer experiences in the NSW trial

• Recent developments

• Supporting carers in NSW

The NDIS

What is the NDIS?

• The new national system of disability support being

introduced in stages from 2013 to 2019

• More choice & control for people with disability & carers

• Includes:

o Community awareness and inclusion

o Information, linkages and capacity building (ILC)

o Individual funded packages for eligible people

• Based on needs – reasonable & necessary

• Not capped or means tested

• Lifelong support

The NDIS in NSW

Hunter trial site

• Newcastle: from Jul 2013

• Lake Macquarie: from Jul 2014

• Maitland: from Jul 2015

Nepean Blue Mountains

• Under 18s: from Jul 2015

• Others: Jul 2016

Rest of NSW

• From Jul 2016

• By Jul 2018

From 2018, the NSW Government will no longer fund or provide

any disability or community care services

Key questions

• How will carers be

affected?

• How can we support

carers?

Getting the answers

• Policy analysis

• Attending meetings and forums

• Contact with FACS, NDIA and other

stakeholders

• Case studies from carers and service

providers

• Carers NSW 2014 Carer Survey

NDIS issues paper

• The NDIS one year in:

Experiences of carers in the

Hunter trial site (Oct 2014)

• Summarises key learnings and

issues arising from the first year

of the NSW trial

• Contributes to knowledge being

used to continually improve the

NDIS

Key findings

• Recognition and inclusion of carers in the NDIS policy

framework is promising but limited

• Future of carer support as NSW transitions is uncertain

• Many carers are already having positive experiences

• Many carers are having difficulty understanding and

engaging with the NDIS

• Many carers are having difficulty supporting participants

to prepare and implement their plans

Carers in the NDIS policy framework

Carer recognition and inclusion

The NDIS policy framework recognises that:

• The role of carers in the lives of participants should be

acknowledged and respected

• Planners should consider whether the support carers

provide is reasonable and sustainable

• Where appropriate, a plan should build the capacity of

carers to provide support

But…

• Treatment of carers by planners has varied

• Some carers feel their perspective has not been properly

considered

• A separate conversation between the planner and the

carer is only a possibility, not a formal entitlement

• The optional ‘carer statement’ is not mentioned in the

operational guidelines, is not formalised in any way and is

not actively promoted to carers

Sylvia supports carers in the Hunter trial site. Some carers she

has spoken to have had positive experiences with planners,

but mostly their experiences have been negative, with some

families being told quite rudely that “it’s not about them”.

One carer Sylvia spoke to was thrilled with the amount of

financial support offered to her son, but was upset that

nobody asked her at any time how she was coping.

- Service provider case study (name changed)

Carer supports and services

Carers of NDIS participants may benefit from the participant’s

funded supports, BUT…

• The NDIS is not focussed on meeting carers’ needs

• Many people with disability and their carers will not even

be eligible for the NDIS

• All NSW Government funding and services relating to

disability (even carer support) will go into the NDIS

• Changes to national funding may affect the

support available to carers

Linda’s daughter Kellie is an NDIS participant. Kellie is fairly

happy with her supports, however Linda feels she has lost

out. She previously benefited from carer retreats, which

provided her with a real break from worrying about things at

home. However, this was block funded and is therefore no

longer an option. She says, “I don’t know how good or bad

[the NDIS] is, but I know I had more before. There’s a whole

heap of carers that, because they’re on the NDIS, are getting

nothing now. It’s as though they’ve wiped us.”

- Carer case study (names changed)

Carer experiences in the NSW trial

Positive experiences

• Improved quality, value and flexibility of disability support

received by NDIS participants

• Flow on benefits for carers, e.g. ability to return to work,

less stress, less financial pressure

• Some funded supports directly supporting the caring role,

e.g. domestic assistance, respite, family therapy

• Positive working relationships with NDIS planners

“The NDIS is allowing my son to receive invaluable support,

especially speech therapy, which we could not afford to

provide at the current level without the assistance of the

NDIA. The difference it is making to his abilities will have a

life-long impact on how he interacts with the world. It has

given us a renewed hope for his abilities to cope with adult

life, and will hopefully reduce the level of financial assistance

he will require as an adult.”

- Carers NSW 2014 Carer Survey respondent

Understanding the NDIS

Many carers have struggled to understand and embrace the

NDIS due to, for example:

• Limited and inconsistent information

• Unclear language

• Uncertainty about the rollout

• Inadequate communication with carers about what to

expect

Patricia cares for her son, Jeremy, who has high support

needs and currently receives individualised funding. She has

many questions about the NDIS: When will it roll out in her

area? Will her son’s level of funding stay the same? Will they

have to go through all the planning and paperwork again? She

has been unable to get solid answers, making her and her

partner unable to plan for the future and increasingly

anxious.

- Carer case study (names changed)

Supporting participants

• Not all carers have been able to access capacity building

opportunities

• Many carers have felt unprepared when they attend

planning sessions

• Many carers feel the NDIS has created more work for them

• Many carers find NDIS plans difficult to understand and

implement

“Huge difficulty engaging service providers - a 100 page

print out of all service providers (names, websites and

addresses but NO phone numbers) was given to us at the

plan approval meeting. As the carer I had to trawl

through the document…In relation to the family therapy,

we were told by the NDIA that although they had funded

it, no-one yet was providing it! Again it is up to me (the

carer) to chase this up. FRUSTRATING, and for me, more

WORK!!!”

- 2014 Carer Survey respondent

Recent developments

Policy framework

• Acceptance of the term ‘respite’

• References to an optional ‘carer statement’

• Carer specific outcomes to be included in NDIS outcomes

framework

• Work ongoing on national integrated carer support system

• Draft Information, Linkages and Capacity building

framework (ILC) – previously ‘tier 2’ – contains a number

items relating to carers

Information and resources

• NDIS Planning Workbook published

• More practical workshops for participants and their

families in NSW

• More transparent promotion of workshops

• ‘What’s new’ section on the website to show updated

information

• More documents published in community languages, Easy

English and Aboriginal versions

Consultation

• Joint Standing Committee hearings in trial sites

• Public consultations on assistive technology, ILC and

quality and safeguards

• Public survey of feedback on NDIS website

• Two NDIS webinars aimed at carers

• Carers Australia to run focus groups and develop supports

• Work on self-management resources

Carer experiences

Updated and new case studies indicate:

• A number of participants moving out of home, reducing

pressure on carers (especially older parents)

• Positive impacts on relationships – can be parents again

• Planners being more flexible and responsive to individual

needs of participants and carers

• Some participants and carers being able to engage more in

their community

Ongoing and emerging issues

Ongoing issues• Term respite still not incorporated into NDIS material

• No information on carer statement, not promoted

• ILC does not resolve support needs of ineligible families

• Website content still hard to navigate, too much jargon

• Information too internet-focused, alienates some carers

• Still a lot of misinformation across NSW, poor

communication from ADHC

• Rollout still unclear

Emerging issues - policy

• Eligibility of people with mental illness and their carers

• Inadequate transport funding affecting carers

• Inadequate affordable housing

• Intersection with health system

• Exclusion of people with significant cognitive impairments

and their carers

• End of case management as a service type

Emerging issues - implementation

• Consultations and webinars not meeting carers’ needs

• Appropriate services not available to spend funding

(respite, education, support coordination)

• Inadequate support and guidance for self-managers

• Difficulty accessing planners / lack of clarity re emergencies

• Limited engagement of Aboriginal and CALD families

• Staff turnover and lack of continuity with ADHC

privatisation

Recommendations

• Resolve potential funding gaps in NSW

• Finalise rollout, ILC and integrated carer support

• Improve and diversify information and communication

• Increase carer engagement and consultation

• Offer all carers a separate conversation with the planner

• Formalise and promote carer statement

• Improve capacity building, advocacy

Supporting carers in NSW

Carers NSW will continue:

• To draw attention to our findings and recommendations in

NSW and nationally

• To gather and communicate information about carers’

experiences in NSW

• To develop resources to help carers in NSW understand

and prepare for the NDIS

Carers NSW NDIS web page

www.carersnsw.org.au/NDIS

• The NDIS one year in: Experiences of carers in the Hunter

trial site

• Carers NSW NDIS Update – monthly e-newsletter

• Carers NSW fact sheets

• Links to non-Carers NSW information and resources

Carers NSW NDIS fact sheets

Five fact sheets are currently available online (printed copies

can be obtained from the Carer Line):

1. What is the NDIS?

2. Where do carers fit in the NDIS?

3. How can I prepare for the NDIS?

4. NDIS checklist for carers in NSW

5. Tips from carers on the NDIS

Coming soon…

• Three remaining fact sheets:

o Carer stories from the NDIS

o What if the person I care for is not eligible for the

NDIS?

o What if I have a problem with the NDIS?

• Getting ready for the NDIS: A workshop for carers, piloted

13 May 2015 in Western Sydney.

Thank you!

Sarah Judd

Policy and Development Officer

Carers NSW

(02) 9280 4744

sarahj@carersnsw.org.au