06 September 2019
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
Dear Sir/Madam
SUBMISSION - NDIS PLANNING
I am an NDIS approved plan manager and a counsellor. I am also a freelance case manager
and a disability advocate. I volunteer my case management and advocacy hours to support NDIA
participants who are experiencing funding issues.
I believe that the National Disability Insurance Scheme is one of the best schemes designed
for people with disability in Australia. However, there are significant gaps in the system that are
detrimental for people living with disability. It is a major concern that the lack of understanding,
expertise and qualifications of planners compromises independence and creates barriers to access
dignity and acceptable means of living.
Many disabled participants are not aware of their entitlements and are too afraid to challenge
the planner’s decisions. Consequently, the majority of participants accept what the planner approves
and live a very challenging life. They constantly worry about their personal wellbeing and the future.
Lately, I have noticed many gaps and inconsistencies in plans I have reviewed. As a result, I
am dealing with at least 1 to 2 requests for help per week.
My professional experience with planning gaps include:
- Wheelchair bound participants with no assistive technology or wheelchairs on their plan;
- Participants with severe disabilities without adequate support hours;
- Children with permanent disabilities without adequate funding for ongoing therapy;
- Participants with severe disabilities without adequate funding for therapy; Page 1
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Substantial funding cuts during the annual review process for children with permanent disabilities; and
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Major inconsistencies in funding for people with similar needs.
THE EXPERIENCE, EXPERTISE AND QUALIFICATIONS OF PLANNERS
Lack of experience, expertise and qualifications of planners appear to be contributing factors
for the inconsistencies in plans I have reviewed. I have seen some clients who are able to function
independently who are overfunded and other clients who depend on a carer for basic needs grossly
underfunded. For example, a client with a spinal cord injury, paralysed from chest down only had
funding for approximately 3 hours of care per day. When I first met this client, he came to see me on
a broken wheelchair, he looked mal-nourished, quite run down, shabbily dressed and visibly
distressed. He said he is suicidal and once tried to wheel himself in-front of a train. Due to a lack of
support he was slowly giving up on life.
Due to impaired hand function, he was unable to attend to his personal care; bowel and
bladder management; showers; meal preparation; eating and drinking; laundry; changing the bed
linen; changing and adjusting clothing; medication management; and general personal needs
throughout the day. All of these tasks are time consuming and require extensive support from a
support worker. He was only able to eat one meal per day when the carer was available.
Although his employment goals were identified in his plan, his employment goals were not
realistic as he didn’t have funding for community access. He was keen on developing work-related
skills to explore employment options.
His shower chair was over 14 years old, the seat was cracked and broken. When sitting in this
chair he experienced involuntary spasm, causing his feet and toes to hit the walls and the metal. As a
result, he had numerous injuries on his feet and toes.
He had no other support, as his parents are both elderly and have major health concerns
including Dementia. Despite this, they were identified as his formal support on his plan. Interestingly,
his first plan review request I submitted was declined and the reasons given to him over the phone in
his own words “They said if a friend had been helping me out recently during the day that had
suddenly moved to a different town they would consider it but because my parents dementia has been
a gradual decline over the last couple of years that there has been no ‘sudden’ or abrupt change of my
circumstance over the last few weeks that under some section would not be applicable”.
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THE ABILITY OF PLANNERS TO UNDERSTAND AND ADDRESS COMPLEX NEEDS
Even qualified health professionals do not understand all disability experiences. They are
often specialised in a specific area and obtain additional professional development or qualifications if
working with a specific population. I believe same principle of specialisation should be applied to
planners. For example, a planner with experience in working with autistic children does not
necessarily understand the needs of mature adults with spinal cord injury. If the planner was able to
understand the complex needs of a person with a high-level spinal cord injury, they would be able to
cover all the areas and allocate appropriate funding to live independently and with dignity.
Planners play a vital role in the decision-making process. They can make or break a person’s
quality of life with their decisions. Unfortunately, people with disabilities have a lot going on in their
lives; the last thing they need is to battle with a system designed for their benefit.
PARTICIPANT INVOLVEMENT IN PLANNING PROCESSES AND THE EFFICACY OF
INTRODUCING DRAFT PLANS
Who understands the needs of an individual better than themselves? Lived experience and
person-centred planning is important for people living with disability. The types of disabilities funded
by the NDIS are diverse and include intellectual, physical, acquired brain injury, neurological
(including epilepsy and Alzheimer’s disease, deafblind (dual sensory), vision, hearing, speech,
psychiatric, and developmental delay.
This is a broad range of disabilities each with their own complexities. For example, not every
person with a spinal cord injury has the same level of function. The higher the level of the injury, the
more complex the needs become. Someone with an acquired brain injury may have different physical
and psychological impairments.
The extent of a disability varies from:
mild — where a person has no difficulty with self-care, mobility or communication,
but uses aids or equipment;
moderate — where a person does not need assistance, but has difficulty with self-care,
mobility or communication;
severe — where a person sometimes needs assistance with self-care, mobility or
communication; and
profound — where a person is unable to perform self-care, mobility and/or
communication tasks, or always needs assistance.
Sources: ABS (1999) and WHO (1999; 2001).
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Given these complexities, it is unlikely that a planner (qualified or not) would be able to
determine the level of disability and support needs over the phone or a brief face-to-face interview.
THE INCIDENCE, SEVERITY AND IMPACT OF PLAN GAPS
The severity and the impact of the gaps in plans are beyond comprehension. For example, if
someone is paralysed and unable to get around independently, without proper support overnight they
could come to serious harm. They are unable to call for help or help themselves in an emergency.
Some of these participants eat one proper meal for the day while the carer is around. They
have to wait until the carer comes back the next day to:
- Eat;
- Drink;
- Move bowels;
- Turn; or
- Escape from danger.
Conclusion
I have heard from some participants that some days they lay in their soiled beds until the carer
arrives the next day to clean up. This affects their skin hygiene, pressure ulcers and also creates
psychological distress. I believe this is inhumane and unacceptable in a first world country. Since the
funding is spent on much needed care, planners should be more compassionate and understanding
about basic human needs. These supports and services are not luxuries for a person with a severe
disability.
In conclusion, I hope the planners will pay close attention to fund reasonable and necessary
supports to help reach goals, aspirations and objectives that will increase independence, increase
social and economic participation and broaden the capacity to actively take part in the community as
per NDIS guidelines (https://scia.org.au/living-with-a-disability/a-new-spinal-cord
injury/accessing-the-ndis/)
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