Valuing Peer Support

Our peers are those who journey beside us as we travel through life. The are the people who were respect and turn to for support and advice. This advice might be around an interest such as visual art, a business venture or major changes in our lives such as the NDIS.

Our peers form our social and profession networks.  In the arts these are the people we work with, train with and support each others artistic endeavors.  These relationships are built on mutual respect and often there are the people who know us the well and desire to champion us.

Transitioning to the National Disability Insurance Scheme for some is a very exciting time. These people and their families are excited that finally they will be able to make choices about what their lives will entail. Choices around accommodation, where they live and the people they live with.  Many people with disabilities have been given no say in where they live or who their house mates are. 

Others are considering work and study options for the first time and young people with disabilities are able to chose mainstream post school options.  Many are deciding to go on to university knowing they will be given the support they need to successfully complete their studies.  Or knowing that supported workplaces are not the only option and the government will assist employers with the costs of work place modifications.

Some are excited about the opportunities around communication and access to information technologies allowing them to communicate with the outside world for the first time.

For many families living with disabilities from those about to start school to families who have adult children in their late 40's and early 50's it's a time of hope, that under this system we might be supported the way we need to be supported. Many have had little or no support until now.  Others have made the unthinkable decision to place young people with very high support needs into nursing homes. There hoping for a more fairer system where people are supported to embrace life instead of just existing . . . waiting and hoping for 'normal'

Yet other live with despair and mistrust. Their have the hopes and spirits raised before.  Murmurs of changes . . . They've seen My Life, My choice come and go, realising it was merely a name changed and those who entered this system were in fact disempowered altogether.  Here's the service or go without.  Again feeling cheated and deflated.

For many living with disability the do not know what choice is.  A placement in accommodation was made.  Meals were prepared without consideration and staff pushed for time grab close out the top draw. Many concerns for these individuals exists under the NDIS.  Even family members despair about improving life for adult siblings.

Another think who gives a stuff, just go away and let me live my life.  Life is what it is! I didn't asked for change and I certainly not doing paperwork for a government I don't trust. 

Even those of us working in the sector pull our hair out not understanding all the changes ourselves yet needing to cost what a service actually costs so people with disabilities and their families can make informed decisions. Things once covered under DSQ are not covered under the NDIS.  Things many people with disabilities won't comprehend.

Wherever you stand or roll on this continuum the changes under the NDIS are now being rolled out.  Time for sticking your head in a bucket is running out.  If you want to continue to be supported under the National Disability Insurance Scheme, you will be speaking to a NDIS planner about your NDIS goals and how you want to achieve them.

Any change whether it is positive or negative is a stressful time in our lives. Simply because it creates uncertainty. I certain feel likely I am feeling like I am riding a roller-coaster most days. This is one journey, whether your a person with a disability, a parent, parent/carer or guardian of someone with a disability you don't want to take on your own.

That's why I am thinking a peer support group is a good idea. Your peers and the people who champion you, know the fear and the stress that the transition to being supported under the NDIS first hand.  The is a journey we can take together.

Even though each of us will take a different path, that niggling feeling of how do I know I am making the right choices?  Will be shared by each of us!

Things to remember:-

• The NDIS is a game changer
• Out is someone else deciding what you can't do and deciding what help you will receive.
• In you and your family now have choice and control.
• You can choose how you want to be supported
• When you want to be support
• By who you want to be support
• And even how you want your package to be administered.

What your package will look like will be determine by you the participant and your NDIS goals.  The NDIS participant is the person living with disabilities.  So the participant's goals and plan is around the participant's goals not the goals of the family unit. However certainly both the participant's and career's statements need to address any concern's the person's disability has an impact on the functioning of the family unit. However in the main the NDIS is about making the participants life the Best it can be!

So it is important to know that the participant must attend and direct the meeting with the planner.  Regardless of what their function level is. The NDIA will certainly listen to the views of others at the table who are supporting the participant, but the planners role is to ensure the participant's goals are meet.

When the participant meets with their planner they will choose who they want to support them.  This is not automatically the person's full-time carer or guardian. If the participant does not invite you to their planning meeting, you can request to speak to the planner and voice any concerns about aspects of the participants plan.

So how do you determine your NDIS participants goals.  When we use the word goals we usually are speaking about something we want to achieve.  For an artists a goal might be to sell a painting.  So the NDIA aren't expecting goals like playing ruby for Australia. But hey! Don't let me hold you back!

We I advise on writing goals, I talk about goal areas.  So your NDIS goals should relate to the following areas of your life:

1. Accommodation: Where you live and who you live with and any changes you might like to occur in the future.
2. Schooling, education, study or Training: This will depend on where your at in your lifespan, although I would argue your never to old to learn.
3. Work - Employment; self-employment; volunteer work or community work. Selling your artwork, falls under self-employment.
4. Health & fitness: Hear I would include anything related to keeping healthy and active. You might have a separate area for sport.
5. Sport: Here I am thinking about you playing a sport like tennis or maybe a rower.  Watching sport or following you favourite football team, I would list under recreation.
6. Recreation: This world including your hobbies and interest and the social activities you enjoy doing.  Like playing pool at the pub with your mates or going to see a musical. You might like to include your annual holiday in here too.
7. A goal area we all will have is how we want to have our NDIS package administrated.

Choices around the administration of your NDIS package. (This is who you want to pay for your support services including transport on your behalf.)

1. The National Disability Insurance Agency can pay your nominated service provider(s) on your behalf. (For most people this is how it works now and their will be no changes to your own administration responsibilities).
2. You can chose a host provider to hold the money from your package and pay your supports as outlined in you NDIS plan. (This will not seem any different to what happens now. Only you have the choice as to whether a government agency or a private company does this for you.)
3. You can choose to self-direct your own support and support services through a host provider of you package.  This means you will direct the host provider on who to pay and how often.
4. There are many models you can use to allow you to self-direct your own funding package.  I recommend you take a look at the NDIS Website.  Under the self-directing/self managing option you can do as much or as little as administration of your funding as you like. However you may want to think about your currents skills, if you need to build your skills in order to self-direct, then the NDIS will help with those costs.  I think another consideration is time and stress levels.

How you chose to have your funds administer becomes a NDIS plan goal, as your package will need to include money to pay for all your administration costs. I think some people assume by doing everything themselves they will save money and have more money to spend on direct support.  This is definitely not true.  You will have additional costs if you chose to employ support workers directly, costs like police checks, blue cards, veachal inspections. insurances, and taxes.  You might also employ an accountant.  These are necessary supports under the NDIS.

So this is how you goals will determine what your support package looks like.  When we discuss support we are no long talking about hours or accessing services. Under the NDIS the 'term' support incorporates a whole range of needs; equipment; services; training and experiences you may currently be unaware of.

Once all the money needed for administration costs, staff training and insurances went directly to the service provider. Now all the money goes directly to the participant and service providers will bill participants for the share of those costs.  Participants and families who intend to self-manage, need to ensure this costs are included in the 'supports' they ask for.

If the supports are not covered in your NDIS goals and asked for then the will not be included in your package so let me give you an example of how this may occur.

Your participants goal is to work at Mcers 15 hours a week.

How your participant achieves this goal is:-

1. A support worker arrives to support the participant to get ready for work. (that support will vary according to the disability).
2. Support worker walks the participant to the bus stop and see them to get on the bus.
3. After the participants shift the supervisor walks the person to the bus and assist them to get on the right bus.
4. A support worker meets the participant at the other end.

These are the 'supports' to be included in the package to allow the participant to achieve their goals.

Rules for writing NDIS Goals:-

• Goals must be clear and specific.
• Goals must be measurable - we need to know when the participant achieves their goal.  i.e. The goal to finish year ten is achieved at the end of the year. 
• Goals must be achievable.
• The NDIS will not fund supports need for goals that may put participants at risk of harm.

Those you fear letting people with disabilities chose their own goals and direct their own supports, must of imagined the law books were going to be tossed out the window.  Participants who self-manage are bound by all small business laws; all employer regulations including paying awards wages and penalty rates.

There is much to consider as you write your NDIS goals and selected the team who will support you to transition to the NDIS. So of these will be your peers.  Whether as a carer and/or parent who is not involve in the planning meeting itself you still need to gather your peers around you.  You to need the support to cope will the person you support making their own choices.

I recommend that we all seek out peer support as we develop and put our goals and plans on to paper.  Wether your excited, frighten or bemused by the NDIS you never know where there's something you want to natter over with a friend or too.