Thank you again for your continued engagement, interest and support. I wish you a restful break and wonderful new year.

2016 has been quite the year, hasn’t it? With full scheme NDIS roll-out from July we have seen really big differences between trial implementation processes and new processes created for participants coming in to the Scheme from July. It has been a huge effort to understand these processes, keep up with them, and then communicate them.

The key to NDIS success is a well-informed participant body. Absolutely crucial. I don’t believe that any major reform ever comes ready-made from on high. Change comes from the ‘bottom-up’, when people can grasp the opportunities for themselves and others. I am proud of our achievements in this area and especially thank Katy Gagliardi who undertook an internship with us and has done a stellar job in communicating a great deal of practical information.

It became especially quickly clear that information on really cool things about the NDIS like self management, plan management and supports co-ordination, were not getting the airing or understanding they needed to make them real choices for people in reality. All participants should have the ability to think through every choice in relation to the NDIS for themselves. We have tried to really fill this gap with clear and accurate information.

Around this we have developed a number of well-received workshops around the NDIS. Again we heard over and over from people that they left most workshops feeling more confused. We have been determined to do something different – bringing accurate, practical and grasp-able sessions for people. We know our pre-planning support assisted people to get good outcomes from the NDIS and wanted to share this knowledge with others. So we have thoroughly enjoyed working with more than a dozen services and informal support and carers groups to run over 25 workshops and will continue offering them in 2017. If you are interested, give us a hoy.

2016 has seen us become registered provider for Supports Co-ordination. This proved to be a large exercise for most small organisations, as it was based on processes created around large traditional disability service providers. We are also working on registration for NDIS categories that will help us to deliver our Micro Enterprise Project to as many people in Sydney who feel it would benefit them.

Supports Co-ordination (and Plan Management) – boring names for some cool things in the NDIS! And BTW we have a workshop titled just this to help you understand these things more and what benefit they can bring.

NDIS funding inevitably means more services. We need those services to be working towards outcomes in our lives that bring us solid foundations – work, relationships, home, contribution based on our potential … A life well lived by our own definition! Services are not an end in themselves, they should always be part of the means to something we feel is important.

How can you breathe life in to your NDIS plan? As always, we will be looking to share our learnings in our practice of supports co-ordination, to help people make real change in their lives, and get creative and flexible outcomes from their NDIS plans.

We believe that it is very important that supports co-ordination is also about practices that support inclusion and community connecting.  We need it to be more than a case management service.

Lastly it has been such a thrill this year to embark on a partnership with Community Living Project to deliver their highly successful and evaluated program assisting people to start their own micro or small niche enterprise. Kyle Wiebe is responsible for the program in Sydney, we have gotten started with participants who wish to dedicate resources to this and are very excited for its expansion in 2017. Kyle comes with business and community development experience and it has been great to see people benefit from this experience, and Kyle benefit from the experience and expertise of people with disability.

We will continue to remain open, informative, collaborative and promoting the value of lived experience in creating change.

Thank you so much again, Merry Christmas and a very Happy New Year

Libby

The NBM site is considered the first Australian site that is part of the ‘full roll out’ of the NDIS and therefore not a trial site like the others.

We are being told that, as part of the ‘learn, build’ motto, there are some differences in this area, including a new role called a Community Connector which is an NDIA response to helping people feel more prepared before their planning meeting (pre planning support). Community Connectors are employed by Uniting Care but are an NDIS specific role.

Do you have reliable information to share about how the NDIS in this region is going?

Have you had help from one of the Community Connectors yet?

I’ve been going around finding out as much as I can and I am really keen to share what I have learned.

– Libby

When?

Thursday 3rd September 2015

Time?

7.30pm-8.30pm Eastern Standard Time

How?

This is an online share – not a face-to-face.

Join the event and you will be sent a link to join an online meeting.

Up to 25 people so first in best dressed.

About an online meeting

We use GoToMeeting.

It suits most computers, but you can check it will work on yours.

Click here to see a video on how it will work!

Adam’s vision for home is to remain close to his family in the eastern suburbs of Sydney. This means finding creative solutions to the affordability issue! Adam’s vision for his place is that it will have the feel of a student sharehouse with three young flatmates without disability. As one of his group said ‘Just like Big Brother but without the voting off’!

Adele is one of our guest speakers on our next webinar, August 18th 2015!

She will take us behind the scenes of this endeavour, which has been built over time.

Click here to find out more and register for this webinar

In the video below you can check out Adam’s sisters and support worker talking about the journey so far.

Don’t forget you can ask about Adam on our next webinar! 

L-R Libby’s husband, Libby and Matthew

I find myself often being asked by parents and those who work in the disability sector about being a ‘sibling’. Have there been difficulties growing up? How do I get my kids involved? I don’t want my other kids to be involved because they have their own lives. What strategies can I use in my work to help parents think about their other kids? How do I even get to talk to siblings as we are always talking to parents?

Here are some of my thoughts about the whole area.

Some themes

Brothers and sisters are likely to have the longest relationship with a person with disability. Usually continuing after parents have died, they can last for 70 years or more.

I have run workshops and also observe the roles of siblings in many of the families I work with.

I’ve heard some interesting comments made and stories shared. All with some common themes it seems:

1. A desire by brothers and sisters to be involved but feeling ill-prepared and uncertain about this
2. Families are so crucial to our well-being but they are a mish-mash of power dynamics
3. All sibling relationships are ambiguous. Basically you love and hate your family at the same time but, strangely, this does not diminish love.
4. There exists a deep emotional paradox with many parents. They both want their other children to be there in the future but they also want them to lead their own lives. Even when unspoken, it remains an energy in families and is often hard to talk about
5. Many siblings appear to watching, thinking and planning in their own heads, regardless of whether it gets talked about. They sometimes have very complex and finely tuned plans worked out about where they will live, what will happen for their sibling etc.

The Orders of Love

The Orders of Love is a theory by a guy called Bert Hellinger (Get you Google fingers going) that I have found very helpful in thinking through some of these dynamics.

There is a natural order to a family that is unchangeable (even through events like divorce or death). Parents are first in line. Then there is the first born sibling, the second born and so on. Imagine it like a line of paper cut-out-dolls.

Image of paper cut-out people

When siblings marry or have a long term partner, they then create their own family, their own ‘paper-cut-out’. Their primary relationship moves to their partner and then often their own children.

However, I think a social dynamic impacts many families in which there is a child with disability that can disrupt this. This dynamic is best represented by those relationship circles that Judith Snow so beautifully captured many years ago. Below is a (sort of and generalised) depiction of the layers of relationship most of us have in our lives.

Circles of relationship

But what is a common relationship experience for many people with disability?

This can often contrast hugely to other brothers and sisters whose lives and relationships expand as they grow up and they develop their own intimacy circle separate from their parents. This is actually the typical experience.

So one of the keys to strong siblings relationships is that each sibling gets to have their own wonderful web of relationship circles that are their very own. There isn’t pressure or a feeling that siblings have to become the primary relationship for the person after the parent and as they get older. Imagine those paper dolls look like this – where each person in the family gets their own life. You can see that people aren’t then dependent upon each other for relationship, but rather get to contribute to each other.

Three different circles of relationships

This implies a responsibility by all involved in the life of a person with disability to be working towards building a rich life with lots of different layers of relationships. A life like this mirrors what happens for people without disability.

Other things that are important to consider

Providing siblings with the opportunity to develop understanding of ‘the system’.

Remember, parents have gathered this information over the lifetime of their child (even if they think the system is unsupportive) but it is actually something that needs to be learned especially foundational information like

1. positive stories of inclusion
2. learning what valued roles are and developing a vision for their sibling
3. developing their own vision and having a chance to dream for themselves
4. talking about and mapping our family relationships

A sibling cannot be a parent!

Be wary about looking to ask for involvement based on a parental role. Even when a parent dies, the sibling relationship will stay that way. This doesn’t mean that brothers and sisters won’t play a key advocacy or safeguarding role in the future. But it is healthiest if it comes from their sibling relationship.
It might not get talked about, but caring siblings will be thinking about these things regardless.

Brooching these topics can take us to very raw, very vulnerable places. But it can be crucial for everyone’s peace of mind into the future.