The National Disability Insurance Scheme (NDIS) is a world-first scheme that provides funding to eligible people with disability to gain more time with family and friends, greater independence, access to new skills, jobs, or volunteering in their community, and an improved quality of life.
The NDIS focuses on your functional disability.
The Federal Court of Australia defined disability under the NDIS Act as “a descriptive concept for the overall effect of a person’s impairments on that person’s abilities to participate in all aspects of personal and community life.” (p51 Mulligan and NDIA, 2015 FCA).
The Federal Court reiterated that that the Administrative Appeals Tribunals’ decision to consider impairments rather than a persons diagnoses is what the legislative scheme intends (p118 Davis and NDIA 2022 FCA). That is the National Disability Insurance Agency is legally required to assess the overall cumulative impact of a persons symptoms and how that impacts their ability to participate in activities of day to day life.
The NDIS requires your health professionals to establish whether you have substanitally reduced functional capacity in 1 of 6 functional domains and that they are permanent and lifelong in nature. These domains are Communication, Social Interaction, Learning, Mobility, Self-care and Self-management. The Federal Court ruled you only have to meet the threshold in any one of these to meet the access provisions (p34 Mulligan and NDIA, 2015 FCA).
Communication: includes being understood in spoken, written or sign language, understanding others and expressing needs and wants by gesture, speech or context appropriate to age.
Social interaction: includes making and keeping friends, interacting with the community, behaving consistently with social conventions, and coping with feelings and emotions in a social context. It also includes the capacity for conversation, social contact, and maintenance, as well as behaviours affecting interactions.
Learning: includes understanding and remembering information, learning new things, acquiring new knowledge, practicing, and using new skills.
Self-Management: refers to the cognitive capacity to organise one’s life, to plan and make decisions, and to take responsibility for oneself, including completing daily tasks, making decisions, and problem solving.
Mobility/Motor skills: this means the ability of a person to move around the home (crawling/walking) to undertake ordinary activities of daily living, getting in and out of bed or a chair, leaving the home, moving about in the community and performing other tasks requiring the use of limbs.
Self-care: means activities related to personal case, hygiene, grooming and feeding oneself, including showering, bathing, dressing, eating, toileting, grooming, caring for own health care needs.
In explaining how your disabilty affects you, you need to focus on how your disability negatively impairs your ability to participate in daily living. You must not focus on your diagnosis, nor the symptoms of that diagnosis, but rather the impact of those symtpoms on your ability to function. For example, most people with Klinefelter’s Syndrome (condition) have abnormal muscle development (Verri et al., 2010) and muscle weakness (symptoms).
Muscle weakness causes mobility and dexterity issues (functional impact). Muscle weakness increases the rate at which the person reaches their “muscular fatigue” threshold, which is where motor function substanitially declines or shuts down (functional impact) as the day progresses. Once in a state of muscular fatigue a person with muscle weakness loses their indepdence as they need assistance walking, eating and drinking as their body will shake (postural tremor) or experience bilateral upper limb tremor (Verri et al., 2010) which can be exascerbated by stress (Rabin et al., 2015) (functional impact). The person with a motor difficulties therfore needs assistance with fine motor and gross motor activities and tasks once in this state. Muscle weakness may mean your child has difficulty walking around a shopping centre and sits in the trolley, or has difficulty riding a bike decreasing their opportunity to play with peers. This is their “functional disability“.
Any discussions with the NDIA must be framed around the impact of this cumulative Disability on that persons life. If a Planner or LAC says thats not your primary disability refer them to the Federal Court decision. They are legally required to assess your entire disability, not your diagnoses. Please reinforce to them the need for holistic supports and that your diagnosis is not your disability.
Recently the NDIS Governance Policy Director confirmed this is the approach that is to be taken.
Feel free to submit this letter as your own evidence in supporting the whole individual in Planning Reviews and Administrative Appeals Tribunal merit reviews.
Since July 2023 the early childhood approach helps children younger than 6 with developmental delay or children younger than 9 with disability and their families to access the right support when they need it.
Children younger than 6 do not need a diagnosis to get support through the early childhood approach where there are concerns about their development.
The General pathway is forparticipants aged over 9. When you are in this pathway you will have a Local Area Co-ordinator (LAC), who will support people with disability to create and work towards their goals, build capacity to make their own decisions and choices and access the supports they need to live the life they choose.
The CSN Pathway provides specialised support for participants living with a disability who have many different challenges impacting on their lives such as mental health issues, incarceration or homelessness, and need a higher level of specialised supports in their plan.
A key difference in the CSN Pathway is participants do not have a LAC, rather they have direct access to a specilaised planner and support co-ordinators.
If you do not get a LAC assigned to you, it is likely you have been streamed into the Complex Support Needs Pathway.
The NDIS Act requires that a Statement of Goals and Aspirations be written by the participant. According to the legislation you are required to specify:
Social and Economic Participation was defined in Young v NDIA, 2017 and was later accepted by the Federal Court (WRMF v NDIA, 2019). Economic Participation is not just your ability to undertake study to eventually work, its is the broader definition that includes participtaing as a consumer, as not everyone will have the capacity to work due to their disability. This broader definition also includes the reality of being a child who does not work but still can have difficulty participating in age-appropriate consumerism. WRMF determined that social participation includes broader defined activities that fall under social life, including sexual needs as these promote social interaction and improve wellbeing.
Children 0-8 years old (Early Childhood Early Intervention (ECEI)) will have their parents write their statement of goals and aspirations for them.
The NDIA offers guidance on how you could write your goals, but ultimately they are not permitted to change your goals. The Agency uses SMART template to guide development of goals (FOI 19/20-0392), however under section 33 of the NDIS Act you do not have to follow this guide. Many participants complain that the Agency will change their Goals and therefore many advocates and lawyers advise adding the following sentence to your first NDIS Goal.
My Goals will not be removed, clipped, changed or omitted in any way without my permission – S33 NDIS Act
SMART Goals Template:
Be aware. SMART Goals are a concept from buisness and education sectors that many People with Disability (PWD) feel is inappropriate for disability.
Australian Senator Jordan Steele-John questioned the Minister and then-CEO about the appropriateness of SMART framework goals during a Senate Estimates in March 2020. As a parliamentarian with disability Senator Jordan Steele-John is an effective and valuable NDIS advocate in parliament.
To ensure you have Choice and Control many participants say it is advisable to have broad goals so as to get the most out of your plan. Most people will enter the NDIS unser section 24, which is a lifetime disability and therefore lifetime goals can be suitable. You do not need specific goals, as broader goals can act as an umbrella for therapy goals or life aspirations. If the NDIA insist you must have SMART goals remind them that section 33 of the NDIS Act is that you write the goals, not them.
Of note the NDIA Computer information system can only accomodate 7 goals, therefore you cannot exceed this number. However there are no character limits to goals, enabling you to put goals within the boxes of other goals, such as goal 8 in box 7 and so forth. Many NDIS participants report they prefer broader goals, which give you greater flexibility in seeking supports throughout your plan maximising choice and control.
These are an example of broad goals submitted by an AXYS member:
Pre-planning is a process where a CEO Delegate will contact you to verify what information you have, or collect information needed to assist you in creating your goals and establishing your disability. This worksheet has been provided to assist you in collating the information the NDIA is likely to ask you when building your plan.
Do you frequently hear the NDIS refusing to fund supports because thats apparently “Parental Responsibility”? This is one of the most common reasons parents seek peer-support in NDIS matters. But what exactly is Parental Responsibility?
Parental Responsibiilty is defined in section 75 NDIS Act as the legal responsibility as in the Family Law Act.
Parental responsibility is we have legal responsbility for our child. As responsible parents we are supposed to discuss support needs of our child with the NDIA to support the family to be able to best support their needs.
Supports for Participants Rules (legislation) is clear that NDIS has the responsibility to provide supports where the child’s need is Substantially greater than a child of similar age and that the well-being of and risks to parents and the child are to be considered.
Reasonable family, carer and other support:
3.4 In deciding whether funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide, the CEO is to consider the following matters:
(a) for a participant who is a child:
(i) that it is normal for parents to provide substantial care and support for children; and
(ii) whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii) the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(iv) whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;
Vicki Rundle (then-NDIS CEO) confirmed during Senate Estimates in early 2019 that NDIS would ‘not force a parent to quit‘ their job to look after their child with a disability.
Remember the main point to make, is the Administrative Appeals Tribunal (QZHH) and the Federal Court of Australia (NDIA v Foster, 2021) requires that the Carer’s Recognition Act 2010 apply to all decision making as it is required by Section 3 of the NDIS Act. The Carer’s Recognition Act states carer’s have a right to their own life.
“All carers should have the same rights, choices and opportunities as other Australians, regardless of age, race, sex, disability, sexuality, religious or political beliefs, Aboriginal or Torres Strait Islander heritage, cultural or linguistic differences, socioeconomic status or locality.“
“Carers should be acknowledged as individuals with their own needs within and beyond the caring role.”
PNFK and NDIA, 2018 determined:
The NDIS will be responsible for support for children, families and carers required as a direct result of the child’s or parent’s disability, including supports that enable families and carers to sustainably maintain their caring role, including community participation, therapeutic and behavioural supports, additional respite, aids and equipment and supports to help build capacity to navigate mainstream services.
Consider making a donation to AXYS so we can continue to provide similar resources. AXYS Australia is a not-for-profit organisation run by volunteers with a direct link to someone with a X & Y Chromosome Variation. We are individiuals, parents, families, health professionals, and allies who are continuously working hard to support, empower and inform. Donations above $2 are tax deductile.