- Disability is an umbrella term covering a broad range of physical, mental, sensory, neurological, cognitive, intellectual, and developmental impairments.
- People with a disability have an ongoing impairment which limits their ability to plan, manage and coordinate their day-to-day needs and activities. They may have difficulty with mobility, communication, maintaining relationships and independently completing daily activities. These difficulties can affect the person's ability to fully participate in different aspects of life such as work, education and social activities.
- Many people with a disability require the additional support and assistance of specific equipment, home and work modifications, as well as ongoing support from a family member who is called their carer, and funded support workers.
Carers are often the greatest advocates for people with disabilities, providing practical and emotional support to help them live their best life. Carers can play a vital role in organising and managing health care, supports, services and funding.
The National Disability Insurance Scheme (NDIS)
provides access to services for people under the age of 65 years with disabilities. People who are on the scheme before their 65th birthday are able to remain on NDIS after they turn 65, or alternatively they can access My Aged Care. Families and carers are essential in supporting people with disability in their NDIS goals, so it's vital they are included in discussions. It is also important that a carer's needs are assessed during the initial NDIS planning and review process to ensure the NDIS plan and budget adequately meets both the participant and carer's ongoing needs.
Ensuring the carer's ongoing needs are supported will help reduce carer stress and the need for any future crisis intervention.
If you require a Carers Impact Statement, please contact us. We can also guide you on how to voice your NDIS carer concerns. It is necessary to ensure that NDIS are aware of all the ways in which a carer assists the participant and that your plans and budgets reflect this.
Preparing for an NDIS plan or review?
Carers should prepare an itemised list of all the ways they assist the person they care for. This will help the NDIA see what amount of support is needed. The NDIS support budget will need to include funding to help meet the participant's ongoing daily needs, especially if the carer is unable to provide care for a particular reason, such as illness or injury.
Things to consider include:
- Verbal prompting or physical assistance with personal care, such as toileting, brushing teeth, showering etc.
- Verbal prompting or physical assistance with communication, medication, food preparation, dressing, accessing the community.
- Verbal prompting or physical assistance with food preparation, morning and evening routines, behaviour modulation.
- Managing finances and money
- Coordination of support services, activities in the community and medical appointments
- It is important to help the NDIA understand the level of support and care given to the person with a disability. Sufficient funded supports are needed to help ensure carers can continue to provide support and care, while ensuring they maintain their own physical and emotional health and wellbeing.
- NDIS will determine what are relevant and necessary supports and services. This includes what is considered as reasonable to expect from families, carers, informal networks and the community. Therefore it is important that carers maintain accurate documents and reports that identify and highlight additional support needs.
Caring for a person with a disability
Carers often provide significant ongoing, physical, emotional, social, behavioural, planning and practical support so that the person they care for can fully participate in life.
Carers are often the greatest advocates for people with disabilities, providing practical and emotional support to help them live their best life.
Caring for a person with complex disability and support needs may require more than just providing the ongoing practical support, like personal care and transport. A carer may also take on a case management role, learning about the various funded and non-funded supports, government supports, services and funding sources. It can involve trying to organise and manage support services, support workers, treatments and therapies.
We have produced a booklet for carers of a person with cognitive impairment and other disabilities that may help.
A physical disability is a condition that affects a person's mobility, physical functional capacity, dexterity, strength and stamina. Some common conditions that may cause physical disabilities are:
- cerebral palsy;
- muscular dystrophy;
- acquired spinal injury (paraplegia or quadriplegia);
- post-polio syndrome;
- spina bifida
- restricted growth
- limb limitations or amputations
- fetal alcohol syndrome
Given the scope and range of physical disabilities, there are a number of peak organisations and support services available that meet the vast support, equipment, technology, employment, recreational, physical, informational and educational needs of people living with a physical disability.
The Physical Disability Council of NSW helps to champion the needs of people with a physical disability and their carer/families. Their
website contains important information relating to people with physical disabilities such as relevant information on specific disability resources and equipment, disability access and equity and information relating to workshops and online forums.
For specific information on physical impairment, driving and licensing please contact Transport for NSW, Roads and Maritime at Services NSW. Additionally if adjustments and modifications are needed to your vehicle, it is best to seek the guidance and assessment of a suitably qualified occupational therapist. It is also important to discuss car and equipment modifications with your NDIS planner.
NSW Taxi Transport Subsidy Scheme (TTSS) provides subsidised travel for eligible people to travel by taxi at half fare, up to a maximum subsidy of $60 trip. The TTSS is not affected by the NDIS. To apply, you need to fill out an application form and provide supporting documents from your medical practitioner or treating specialist, so that the severity of your disability or medical condition can be assessed by Transport for NSW independent medical assessors. See
Key Links below to check eligibility.
An intellectual disability relates to a person having difficulties associated with both their adaptive functioning (their communication, independent living skills) and their intellectual functioning (areas such as learning, problem solving, judgement and decision making. A person with an intellectual disability can have difficulty with communication, accessing the community independently, maintaining relationships, learning, making appropriate choices and decisions, and performing everyday activities. There are four levels of intellectual impairment, ranging from mild to moderate to severe and profound. To be diagnosed as having a mild intellectual impairment a person needs to have score less than 70 in an IQ test. Just as with physical disability, the scope and range of ability, function, capacity and independence amongst people with an intellectual disability is vast, ranging from people who can work, study and live independently to those who require around the clock support and assistance.
Key services and supports
There are many advocacy and peak organisations supporting people with intellectual disability. The
Intellectual Disability Rights Service (IDRS)is a specialist legal advocacy service for people with intellectual disability in New South Wales. Their website contains useful information and resources. Go to
Council for Intellectual Disability provides many great resources for people with intellectual disability and their carer.
We have compiled an Intellectual Disability Health booklet for carers. The booklet is a portable tool to manage health related information, such as details about health conditions, personal information and medical appointments.
It's an easy 'go to' folder to take to all of your appointments and allows practitioners to record their interventions, medications, treatments and communications. It's a great way for both the carer and the person with the intellectual disability to keep track of appointments, medications, scripts, and any concerns. Please contact us for more details if you would like one.
Communication and Care Cues (CCC) Information for Family & Carers - People with dementia, intellectual disability, or other memory and thinking problems, often have difficulty coping in an unfamiliar environment like hospital and may find it hard to communicate their needs. As a carer, when you're coming into hospital, your knowledge of the patient, especially in regards to communication and behaviour, can help us provide better 'person-centered' care. So when someone you care for comes into hospital, please ask about, and fill out theCCC Form. Alternatively, you can complete this form now and have it ready for when you next come to hospital.
A sensory disability relates to a person having an impairment or deficit in one or more of their senses. This does not just relate to sight and sound, but also touch, smell, spatial awareness and taste. Common sensory impairments include deafness and hearing loss, blindness and low vision. Other sensory difficulties such as severe sensory processing, and reduced spatial awareness can also impact on a person and cause impairment in everyday functioning. Note, a person can experience multiple sensory impairments. There is a vast range of experience, function and independence amongst people living with a sensory disability ranging from people who can live and work independently to others who require daily support and assistance.
Multicultural disability supports and services
The Multicultural Disability Advocacy Association of NSW (MDAA) is the peak body for all people in NSW with disability and their families and carers, with a particular focus on those from a culturally and linguistically diverse (CALD) / non English Speaking (NES) background with disability.The
Transcultural Mental Health Centre (TMHC) is a state-wide service for people from culturally and linguistically diverse communities, health professionals and partner organisations across NSW to support good mental health.
Ethnic Community Services Cooperative (ECSC)
ECSCis a NDIS service provider who caters for the CALD community. They provide bilingual disability support staff, as well as CALD disability, employment, volunteer and community and social participation support services.
Physical and sensory disability links
Intellectual disability links
Learning difficulties and disabilities links
Child disability related links
Conditions affecting the brain or nervous system
Contact Carer Support Tel: 02 9462 9488