National Disability Insurance Scheme (NDIS) and Epidermolysis Bullosa (EB)
Please note: While every care has been taken to ensure that information contained on this website regarding the National Disability Insurance Scheme is accurate, changes to the Scheme may occur which might impact on the accuracy of the information and DEBRA accepts no responsibility in this matter. If in doubt potential clients of the NDIS should seek their own advice to verify their eligibility and entitlements before acting.
What is the National Disability Insurance Scheme (NDIS)?
The National Disability Insurance Scheme (NDIS) is a single, national insurance scheme that funds reasonable and necessary support to help people including children with a disability reach their goals throughout life. The NDIS may also support families and carers of a person or child with a disability.
This may also apply to existing state disability programs which have migrated to the NDIS.
The assistance participants receive is based on meeting their ‘reasonable and necessary’ needs and where there is a substantially reduced functional capacity. Functional capacity may encompass communication, social interaction, learning, mobility, self-care and self- management. Therefore the eligibility test primarily uses a functional assessment, rather than a medical diagnostic approach.
Further definition on functional capacity can be accessed by clicking here.
Importantly the NDIS scheme is not responsible for the diagnosis and clinical treatment of health conditions, including ongoing or chronic health conditions or where the predominant purpose is treatment directly related to the person’s health status. This would generally encompass; general practitioner services, medical specialist services, dental care, nursing, allied health services (including acute and post-acute services), preventive health, care in public and private hospitals.
Accessing the NDIS
To access the NDIS a participant must meet a number of requirements which are summarised in information provided by the NDIA. These requirements include: availability of the Scheme where the participant resides; participant’s age, residency status and nature of disability.
This information can be accessed by clicking here.
Meeting the Disability Test – EB
The National Disability Insurance Agency (NDIA), which administers the scheme, has developed a list of conditions which are designed to streamline the access process in certain cases. EB is one of these conditions. This may also apply to existing state disability programs which have migrated to the NDIS. Examples are early intervention services for children with significant developmental delay and disabilities, and adults with progressive disabling condition. Individuals with the severe types of EB on List A will not require any further assessment in satisfying the disability test. Those with milder forms of EB may qualify under List B subject to a further assessment by the NDIA.
List A Condition(s)
Where a person has been diagnosed with a condition(s) on List A the NDIA will be satisfied that the person meets the disability requirements without further assessment. List A under the heading of “Genetic conditions that consistently result in permanent and severe intellectual and physical impairments” includes the severe forms of EB.
List A can be accessed by clicking here.
List B Condition(s)
List B is defined as permanent conditions for which functional capacity are variable and generally require further assessment. List B under the heading of “Conditions resulting in physical impairment” is referring to EB in its milder forms.
List B can be accessed by clicking here.
Where a prospective participant has been diagnosed with a condition/s on List B the NDIA will be satisfied that the person has a disability attributable to one or more impairments that is, or is likely to be, permanent without further assessment in that respect with the NDIA only needing to assess whether the prospective participant:
- has an impairment/s that result in substantially reduced functional capacity to perform one or more activities;
- has impairment/s which affect the person’s capacity for social or economic participation; and
- is likely to require support under the NDIS for the person’s lifetime.
List C Condition(s)
There are also a number of defined state and territory disability programs identified in List C. Where a person is an existing client of these programs they will generally be considered to satisfy the NDIS disability requirements without further evidence. List C defined programs have disability requirements equivalent to the NDIS.
List C can be accessed by clicking here.
List D Condition(s)
List D addresses early childhood (under 7 years) where there is a permanent impairment and the child may benefit from participation in the Early Childhood Early Intervention (ECEI) program. Where a person has been diagnosed with a condition(s) on List D the NDIA will be satisfied that the person meets the disability requirements without further assessment. The NDIA currently refer all children under 7 years, with an accepted disability to the ECEI. However the ECEI may act as a gateway to a wider range of services funded by the scheme.
List D under the heading of “Conditions primarily resulting in physical impairment” refers to EB and can be accessed by clicking here.
Further information on the Early Childhood Early Intervention (ECEI) program can be accessed by clicking here.
What is the nature of support provided by NDIS?
NDIS support will generally fall into either general supports or reasonable and necessary supports.
A general support refers to a service provided in the nature of a coordination, strategic, or referral service or activity. For example the allocation of an NDIA Local Area Co-Coordinator.
Reasonable and necessary supports are funded by the NDIS in a range of areas, but are generally sourced by the participant, and may include education, employment, social participation, independence and living arrangements. These supports are intended to allow a participant to reach their goals, objectives and aspirations, and to undertake activities to enable the participant’s social and economic participation.
Each approved participant will receive a funding allocation, split into three broad categories:
Includes supports and assistive technologies such as a wheelchairs and electric beds.
Capacity building and investment
Includes supports such as therapy services, psychosocial support to build the necessary skills to allow self-sufficiency and normality to the extent possible.
These are direct supports such as personal care (which may include consumables) which allow participants complete activities related to day-to-day living.
It is important to note that before any support is considered the NDIA needs to be satisfied that the funding or provision of the support takes into account what is reasonable to expect families, carers, informal networks or the community to provide. For a participant who is a child, the NDIA must consider that it is normal for parents to provide substantial care and support for children and whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age.
The following factors will also be taken into account in determining access to the NDIS:
- Must have the objective of sustaining and/or improving normal function (capacity building and not curing the illness itself which is deemed medical). NDIS may cover treatment or support for behavioural aspects that improve the persons functioning but not the illness itself.
- Requirement must exceed a reasonable level of normal care that would normally be provided by say a family, carers, informal networks (i.e. extra, over-and-above)
- Support must be effective, beneficial, reasonable, necessary and demonstrate good practice
- Are there individual circumstances to be taken into account?
The NDIS in determining whether a support is medical or otherwise will rely on tests such as:
Will the NDIS provide support for the family of a person with a disability?
The NDIS recognises that families can play an important part in the lives of participants – both as a critical relationship and as a source of care and support with some participants and families needing assistance to sustain these relationships.
The NDIS may fund supports that families need as a result of a family member’s disability, as well as supports that enable sustainable caring by family members. Such supports would form part of the planning conversation with an NDIA representative and be included in a participant’s plan. This may include:
- family support and counselling due to a family member’s disability;
- building the skills and capacity of other family members to manage the impact of a participant’s disability on family life;
- supports that increase the participant’s independence, as well as supports that enable the participant to enjoy social and community activities independent of their informal carers;
- supports aimed at increasing the sustainability of family caring arrangements, including personal care and domestic assistance related to the person’s disability.
NDIS information on family supports can be accessed by clicking here.
How will the NDIA assist me?
Local Area Coordinators (LACs) are organisations who have partnered with the NDIA to deliver the NDIS. LACs have three key roles:
- They will link you to the NDIS. For a majority of participants, LACs will work with you to develop your plan, help you implement and monitor how your plan is going, and review your progress regularly.
- Link you to information and support in the community and mainstream services such as health and education, and
- Work with their local community to make sure it is more welcoming and inclusive for people with disability.
The NDIA have produced a number of publications which help to understand key information about the NDIS including what it is, if you can access it and contact details.
The NDIS Pathway booklet provides, as a first point of familiarisation with the scheme, a visual representation of what the NDIS can provide in terms of support and how you can access that support. Familiarisation with the processes will assist when meeting with NDIA local co-ordinators. The booklet can be accessed by clicking here.
The following publication can be accessed by clicking here.