Social and community support

You may come across the following people or organisations involved with social and community support:

Social and community support Role overview
Counsellor A counsellor is a person you can talk to so they can help you overcome difficulties in your life. If appropriate, they can assist you to make the changes you want to make.

Some counsellors specialise in certain areas, such as finances or grief.
Equipment providers, commonly referred to as suppliers Equipment providers are commonly non-government companies that specialise in the supply of equipment, modifications and other types of supports for people living with disability.
Family, friends and neighbours Family, friends and neighbours can be an immense source of support. Considering them as part of your care and support network can broaden opportunities for practical and emotional support. It may help to have reliable supports that you are comfortable with who know your story.
National Disability Insurance Scheme (NDIS) Local Area Coordinator (LAC) LACs help people understand and access the NDIS. They also work with NDIS participants to develop and use their NDIS plan.

A LAC will connect people with disability to supports, services, activities in their community and other government services. LACs also work in communities to help them become more accessible and inclusive for all people with disability.
Rare Find Foundation, and other charities There are many charities (sometimes referred to as not-for-profit organisations) in Australia that work towards achieving better outcomes for people living with rare diseases.

Rare Find Foundation is focused specifically on individuals with GM2 conditions, such as Tay-Sachs and Sandhoff diseases.
Social Worker Social workers help people to face life’s challenges, improve their wellbeing, and do their best to ensure they are treated fairly.
Your local community or maternal, child and family health centre Community centres and maternal, child and family health centres have different names and offer different services, depending on the state or territory.

Speak with your GP about the local services available to you.

The Australian Government’s Health Direct website can help you find health services locally:

https://www.healthdirect.gov.au/australian-health-services

The Australian Government’s Pregnancy, Birth & Baby website can help you find maternal and child health services locally:

https://www.pregnancybirthbaby.org.au/australian-health-services
Your local council and library It is worth looking into the types of services that your local council offers. Examples that may benefit you in this situation include:

  • Health services, such as immunisation services
  • Community services, such as childcare, community care and welfare services
  • Planning and development approval (for example, if you make modifications to your home)
  • Cultural facilities and services, such as libraries, art galleries and museums and community events
Other important community locations You may wish to investigate the types of services that other important community locations may offer to support you during this journey.

These locations may include:

  • Your workplace
  • The child care or school of your child or loved one, or a sibling of theirs
  • Places of worship

Many workplaces offer their employees access to Employee Assistance Programs free of charge. Child care centres and schools may have in place formal support programs, or may be able to tailor support to your unique situation. Places of worship may be able to offer spiritual, cultural, emotional and other types of support.

The National Disability Insurance Scheme (NDIS)

The National Disability Insurance Agency (NDIA) is an independent statutory agency. It is the Australian Government agency responsible for implementing the National Disability Insurance Scheme (NDIS).

The NDIS supports a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers. It provides all Australians with disability with information and connections to services in their communities such as doctors, sporting clubs, support groups, libraries and schools, as well as information about what support is provided by each state and territory government.

Importantly, the NDIS is distinct from the health system.

The NDIS is designed to be managed by those with a disability (known as ‘participants’) and their family. While learning how to do this can be challenging, you can ask for help at any time, whether from the NDIS directly or from the Rare Find Foundation.

NDIS participants may receive supports and services, including assistance or products that help a person in their daily life to participate in the community and reach their goals. The majority of in-home supports, modifications and equipment can be accessed through your child or loved one’s plan with the NDIS. However, first you need to begin the application process.

Eligibility

The NDIS is a national scheme, which means that all Australians are able to access it.

Access to the NDIS is not income tested. This means the supports you receive are not based on your household earnings, unlike some other Australian Government support programs.

When deciding whether someone meets the criteria to access the NDIS, the NDIA will first consider whether a person meets the age and residence requirements. If they do, the NDIA will then consider whether that person meets either the disability or early intervention requirements.

Children aged 0-6 years may receive support under the NDIS through the Early Childhood Early Intervention (ECEI) approach. It is important to know that the infantile forms of Tay-Sachs and Sandhoff diseases are both on List D – Permanent impairment/Early intervention, under 7 years – no further assessment required.

If your child or loved one is around age 6 years and 9 months, they are no longer eligible to qualify through the Early Childhood Early Intervention approach. You will need to contact the NDIA for an application form. After receiving your application form, you have 28 days to return it. Contact your Specialist and Occupational Therapist who can provide reports to support the application. Your Specialist only needs to confirm the diagnosis in a letter. The Occupational Therapist will conduct a range of tests that will help to inform the Local Area Coordinator about the needs and goals of your child or loved one. Both Tay-Sachs and Sandhoff are on List A  – Conditions which are likely to meet the disability requirements in Section 24 of the NDIS Act. This means whilst the process will take a little longer, you should be approved for a NDIS plan. If not, please contact Rare Find Foundation to advocate on your behalf.

This means a child living in Australia who has been diagnosed with the infantile form of Tay-Sachs or Sandhoff disease automatically meets the disability access criteria.

Rare Find information iconFurther Information

See The Australian Context for information on eligibility.

You can find out more information at the following websites.

This webpage includes three booklets to guide you through each stage of the application process.

Rare Find Helping Hand iconOur Helping Hands

It can be helpful to have assistance with your interactions with the NDIS. The following people involved in your care and support network will be able to help you:

  • Rare Find Foundation
  • GP
  • Specialist
  • Allied health professionals

It can also be helpful to have face-to-face meetings with the NDIS, rather than over the phone, especially for complex conditions like Tay-Sachs and Sandhoff diseases. Be sure to ask for six-monthly meetings (plan reviews) due to the rapidly changing needs of your child or loved one.

You also have the option to write or give a carer impact statement. This statement includes information about how you could be better supported to support your child or loved one and wider family.

Rare Find information iconFurther Information

You can find out more information at the following websites.