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Home » Individuals and Families » Resources for parents and families

Resources for parents and families

 

The Association for Children with a Disability (ACD) is a Victorian information, support and advocacy organisation for children with a disability and their families. A range of valuable resouces relevant to children with a genetic condition that causes disability are available on their website www.acd.org.au.

Through the Maze provides a comprehensive overview of services and support available in Victoria for parents of children with a disability. 

 Through the Maze

  

Helping You and Your Family provides information for families iwho have a child with a disability or developmental delay. Topics include: Diagnosis, Emotions, Family and Friends, Siblings, Looking After Yourself, Your Support Network, Working Together, The Information Maze, Through the Maze, Children with Autism, Parent Support, and an easy reference list of phone numbers and websites.

 

                                                            Helping you and your family

 

Growing Together is a parents' guide to supporting siblings of a child with a disability. It includes stories and quotes from siblings and parents, as well as useful suggestions for dealing with a range of different situations.

 

Growing Together

 

Positive Education Planning ´╗┐provides parent stories and information on the following topics: Parents and Schools: Developing Positive Partnerships, The Student Support Group, Understanding your Child as a Learner, Individual Learning Plans, Setting Goals, Supports for Students with a Disability, Measuring your Child's Progress, Raising a Concern, and Advocating for your Child. 

 

                                                             Positive _education _planning

 

See the ACD website for more information and resources, to download these booklets in languages other than English, or order printed copies of the booklets.

 

MyTime groups

MyTime groups provide support for mothers, fathers, grandparents and anyone caring for a child with a disability or chronic medical condition. 

It's a place for you to unwind and talk about your experiences. It's a world away from
appointments and therapy. It's support for you.

See  www.mytime.net.au

 

Scope Better Start Early Days workshops

Still finding your way in the disability system? Is your child eligible for $12,000 in funding to assist with maximising their potential through therapy?

The free Better Start Early Days Workshops will help you understand the funding and services available for young children with a disability.

Who is eligible to receive support under Better Start?
Eligible children are aged under six years and have been diagnosed with Cerebral palsy, Down syndrome, Fragile X syndrome, moderate or greater hearing or vision impairments, including deafblindness, Prader Willi, Williams, Angelmen, Kabuki, Smith-Magenis, CHARGE, Cornelia de Lange, Cri du Chat syndromes, Microcephaly or Rett's Disorder.

See: www.scopevic.org.au/news-event/better-start-workshops

 

Variety's Smile Program

Variety's Smile Program provides responsive financial and practical assistance and facilitating access to information, resources and services for the families and carers of children affected by a rare disease or condition.

Variety's Smile Medical Support Grant provides assistance to families with a child who has a rare disease or condition, to purchase minor items and services relating to their child's healthcare, over a 12 month period. Through this program Variety provides a grants of $1,000 for expenses relating to medical appointments, healthcare items, therapy, respite care, parking and fuel, and can be applied for once every 12 months.

The Case Management Service provides the service of a Case Manager for families affected by rare diseases and conditions. Variety's Smile Case Manager will be available to support families affected by rare disease, helping to find support networks and assistance (includes financial, emotional and physical support).

More info here.

 

Variety's Caring for Kids Program

Through Variety's Caring for Kids Program, Variety helps parents care for their sick children at home by providing financial support for medical items and equipment.

More info here.

 

Variety's Future Kids Program

Through Variety's Future Kids Program, Variety helps children realise their potential by providing financial support and scholarships for education and communication needs.

More info here.

 

Melbourne City Mission Disability Support

MCM Support Coordination is enhanced case management for people with a disability and others who are important in their life, to develop a plan with goals and strategies and help to access much needed ongoing services and supports. Call 1800 343 287

Melbourne City Mission also provides respite or community access in a flexible service negotiated between the carer, the person with a disability and Intake in consultation with a program called Your Staff. The amount of support that can be accessed is determined by funding packages such as Respite for Older Carers, or Children and Young Persons' Respite. Other life-style support for people with a disability is also provided on a fee for service basis. Call 1800 343 287

More info here.

 

Family Information Portal

An online portal developed by consumers in partnership with the RCH and the Vic Paediatric Palliative Care Program, to help families find equipment, funding, support and assistance. These links are relevant to most families caring for children with life altering illnesses and chronic conditions.

Support groups are encouraged to submit links to further resources they know of for inclusion via the Feedback button at the bottom of the landing page.  This way we'll be able to build up a really robust resource.

More info here.

 

The Keune Foundation

The Keune Foundation provides financial assistance to families that have a child that has been diagnosed with a life threatening illness. To be eligible for assistance you need to be an Australia citizen or permanent resident and the child has to be under 18. For more info see the Keune Brochure, Application Form and  Information.

 

Healthcare Directories

Virtual Communities

Webinars & Podcasts

Support Groups

Klinefelter Support

Neuromuscular Support

NF Support