Thursday, February 22, 2018

NDIS Pathways - what is best for you.

I became an ndis participant in June last year. While my planing and transition experiences was empowering, navigating and accessing services and negotiating service agreements has been disappointing.  Overall in my area service providers are still struggling with the changes and providing client directed programs.  Many have chosen to stay with their tried and true programs and this was anticipated to suit most service users who were transfer to the NDIS.

What has caught service providers by surprise is the increased demand for service from new customers. In the lead up to the ndis in Ipswich their was an air of uncertainly, this left a number of services unprepared and still struggling with staff shortages. This is the case with the current provider. I had a new worker start training last night.  I was alarmed that my provider is short staffed, but still taking on new participants.  The last two weekends their been unable to fill my inhome shifts. 

Self-managing has enabled me to engage a 
home maintenance and art installation team 
to assist with tasks support staff cannot due to
organisation policy. 

Landscaping an accessible garden has been one project. 

Regular readers of my blog will know I am in the process of engaging other individuals to join this team and on Tuesday I placed that job advertisement on SEEK. I thought I share more of that journey in another post.

Today I wanted to discuss the current confusion around pathways to join the National Disability Insurance Scheme.  Recently I took part in a servery and the ndis is currently trailing a new pathway to the ndis process. The ndis will continue to be rolled out to the end of 2019. It is my belief that the roll-out has occurred to quickly for political gain, however I now thousands of Queenslanders were desperately need change.  

The ndis key agenda is to increase the social and economic participation of people living with disabilities and their families. One thing we all wanted was to be included in.  I think for many this has been the biggest disappointment, for those who have transfer to the ndis from the previously state run programs. Many feel nothing has really changed.

In terms of legislation and funding reforms this is not true. It is my experience is that these key reforms have not reached participants because support services and others have not understood the major changes especially when it comes to participant choice.

Their are two main pathways to becoming a ndis participant

  1. Transferring from state funded programs to the ndis. (In Queensland the Department of Communities, will give the ndia some of your basic information to the ndia. The ndia will ask if they can access your Department records to bring the transitioning to the nids). Your current providers should be providing you with information on the ndis and how to commerce your pre-planning. 
  2. The other way is to apply for assistance directly to the ndia (National Disability Insurance Agency. Once approved the pathways are the same. 

These pathways are currently under review and you should check the ndis website for changes. My experience was:

  • Pre-planning - prior to a call from the ndis I had attended information sessions, a self-management preparation training course and mapped out my ndis goals. I was still uncertain about choosing my service providers. Despite knowing how the sector worked, being on the Board of a Service Provider. Owing my own business and confident in negotiating insurance policies, I did not want to move directly into engaging my own team. I admit I like to dot my i's and cross my t's before signing things off. 
  • In March I was contacted by the ndia and ask a few questions around my eligibility and then consented to them accessing my department of community recorders.  
  • I was contacted a few times for a planing meeting to occur by phone. I said no and insisted on a face to face meeting. This is your right. I had my planing meeting in June.
  • Just over a week later my ndis plan was approved,
  • Then my head went into a spin. I needed to notify my current providers I was moving on and arrange bridging agreements. Bridging agreements can be form one day or a month.  (In my region a lot of people felt pressured to make choices. Like me they were better funded under the ndis and able to access new service.  One piece of advice take five and use bridging agreements with current providers. You don't need to make changes to you are ready.
  • Then when you have make your choices notify your existing providers and ask for a quote and service agreement form any new provider you want to use. This will occur not matter how you chose to have your package managed.
  • The essential peace of advise I received was life cannot be put on hold while you transition to the ndis.  The week my package was approved, I needed to fly to Sydney for work and returned how very ill. So preparation is key!
SA State Art Gallery 

The current trend is those who are prepared for meeting with their planner (over the phone or face-to-face) have more successful scarification rates. Before you commence planning you should.

  • Have a basic knowledge of the ndis and perhaps attended some information sessions.
  • Understand your plan or family members plan is about the participant who will benefit from the package the most. 
  • A plan does not require you to identify services or services providers you will access. Not will you be naming support workers you want work with.
  • You will be asked to outline your two main goals for the first twelve months.  (The things you want to do the most) You need to be as specific as you can without naming service providers.
  • Your support workers and current providers will be key in your pre planning, but should not be involved in the planning or selection of you services.  This helps insures the choices you make for you and/or your family are made independently.
  • In pre-planning you will want to discuss your ndis pans with people who know you well and for some people that will be service provides and support staff. Transitioning to the ndis is not something you want to do on your own. Your current providers are responsibility for providing you with enough information on the ndis to allow you to pre-plan.
  • You do not need to tell your provider or support workers what changes you intend to make if any.
  • Good news - If you are happy with life now (and many people are) you do not need to make changes to your support providers of services you access.  This is the ndis and how you organise your supports or families supports is up to you. What you do need to do is express these as goals and your ndis planner will support you to do this. 
What to explore? 

  • Life now - How does it look? Write down every thing you do in a week; who you spend time with; activities you attend; things you need help with; and who helps you do those things? If you or your family member is non-verbal or has difficulty communicating you could take photos to show the planner what life looks like now.  Facially expressions might give clues to what activities your family member enjoys the most. 
  • Also record what help you receive now; who helps you with what; any equipment or medical supplies you need. Technology like communication devices or medical alerts. Write these things down as you thing of them and keep all your ndis stuff together.   
  • Changes - if you could what would you change? It could be where you live; wanting to find a job; or just new hobby.  Don't worry about not knowing the where, when's and how's yet? Just have fun looking at what is out there. What no changes your next step is to set some goals and think about who you want to manage your package, under the ndis that could be you or someone else you trust, like your parents.
  • What could life look like - While your activities need to be thing you can do with assistance and what you can afford allow yourself to dream a little.  Could I move out of home? Could you do some volunteer work? Would you like to learn something new? Or would you like to travel?

These are the things that will assist you to establish you ndis goals.  The more new things you can try before meeting with you ndis planner the more choices you can make on how to use your ndis funding and create a package that works best for you and your family. 

Talking the ndis Talk

Understanding the ndis terminology will assist you to work with your planner, who may become your LAC, will also assist you in your planning.  (LAC) your local area coordinator, during your planning meeting you will be asked if you'd like assistance to set up your supports. So let's explore some key terms.

Participant - is the person with a disability. While the whole family may benefit form the ndis package it is the person with the disabiliy who needs are meet.

Participation - The key role of the ndis package is to enable people with disabilities and their families to participate in the social and economic life of the community.  So support for your child before and after school may assist parent/care to return to work.  It is important in your pre-planning to consider who your family unit will function through the support of the ndis.

NDIS Goals - What you want to do (activities) or how you want your ndis package to assist you and/or your family to live you best life. Living your best life, is about living a life that looks like the life of your peers.  For some participants that might mean supported accommodation or 24 hour support in their own home.

Supports - Under the ndis there are more types of supports available. The role of all supports received is to maximised the independence of the participant now and into the future. Future planning for a family member should be included in your pre-planning process. This is brutal 'what happens to a family member after you pass away'. A goal to move out of home in five years time might be good to work into an ndis plan.  Some of these types of supports fall under improving daily living.    

Improving Daily Living Supports - include: equipment; home and care modifications; assisted technologies; guide and assistance dogs, early intervention programs, medical aids relating to your disability; early intervention programs, and therapies programs; 

Reasonable and Necessary Supports - are supports required due to your/ or family members disability to meet everyday activities  needs and supports needed to achieve your goals.  (Note: the ndis will only paid for items or costs incurred as a result of the disability).

Understanding choice and control - Until now people with disability have had little input into the types of supports they receive and who provides their supports.  The planning process puts the participant in the control seat to enable them to plan what they would like their lives. For example if your goal is to learn how to oil paint then the ndis will only pay for the cost of a support worker to enable you to attend class. Not the costs of your art class or your art supplies.

What choices can you make under the ndis?

The ndis will support you to make choices about your or your family members lifestyle, which is how every other Australian makes their independent choices. Such as,  where do I live?  Some choices you might make are: to continue living with your family or move closer to family members; to live in supported accommodation; to be supported to live independently in your own home or to buy a purposed built new home. 

Previously the money that paid for your support needs was tided to a region of Queensland, moving to another part of the state meant reapplying for your support needs and their was not guaranteed you would be successful. The ndis enables participants to take their ndis package to any where the want to live in Australia. 

When your thinking about your ndis goals and what you like to use your ndis package to achieve you might like to divide your life into areas. 

  • Accommodation
  • Schooling, education and training.
  • Work life including volunteering.
  • Learning new skills and developing life skills.
  • Health, well being, fitness and sport
  • Improving independence.
  • Hobbies and recreation. 
  • Social and developing social skills 
The ndis is a great opportunity to explore, try new things; and meet new people. Of course not everyone copes with change so for some participants keeping things as they are is important. We'll come back to how to set your goals. 

Under the ndis you can chose:
  • How you want to be supported (This is part of your ndis plan)
  • Who you want to support you (Support services and suppliers or engaging your own support team. This is not part of your ndis plan)
  • When and where you want to be supported (not part of your ndis support plan).
  • How you want you ndis package to be administrated (part of your ndis plan).
The choices the form your ndis plan along with your goals will determine the structure of your package. Once you plan is approved you will meet with your Local Area Coordinator who will explain what each area of your budget entails and how that will be managed. For participants under the adult guardian the Public Trust needs to be involved in your planing meeting.  This does not mean they can make the choices for you. In most cases the ndia will recommend they take care of your package.  The ndia are independent and have no kick backs from the services you will receive so for those who want every thing coordinated for them this is a good choice.

So if your not already confused as part of your pre-planning you will need to thing about how you want you package to be managed. In the past the Department of Communities did this on your behalf if you want something like this to continue you choices are:
  1. To have the ndia manage your support.
  2. To use a host funds provider.
These two pathways do not allow you to self-direct your supports. Self-directing means you want to choose your own support services and suppliers and/or engage your own support team.

Choosing to use a funds host provider or a plan manager would allow you the following options.

  1. Choose not to have the government agency involved in the management of your funding.
  2. Let a third party do all the administration work on your behalf.
  3. Self-direct your package through a supports coordinator.
  4. Self-direct through a plan manager.

The last administration option is to self-manager your package. Choosing this options gives you the most choices but it comes with more responsibilities and demands some of you time and effort. 

Some choices you can make if you self-manage are:

  1. Self direct your own supports
  2. Chose your own support services and suppliers.
  3. Engage a plan manager or support coordinator.
  4. Engage you own support team..
  5. Use suppliers that are not registered as ndis providers.
  6. Completely manage your own package. pay your own invoices and use the ndis portal for your ndis reporting.
Regardless of how and who administers your ndis package the ndia will give you the funds to meet those costs. So don't fall into the trap of if I self-manage my package I can save money and have more support hours.  That is an old school way to think about supports. 

You must spend your package as spelt out in your ndis plan. Your core supports budget covers you reasonable and necessary supports provided by disability support providers. That is things like individual support in home or in the community; group support or activities; centre based activities; respite care; holiday and recreation activities. 

In your ndis plan their is a separate build for plan management; equipment; therapies and improved daily living. Self managing your plan and engaging you own team means you are required under the law to meet all employer responsibilities including training. insurances, safety checks. payroll and taxation. If you are considering undertaking this you might want to check out the ins and outs of these responsibility.  There is funding to help you to up skill to enable you to completely self-manage your package. 

So your pre=planning is almost complete, but before you meet with your planner there are some other things I recommend you do. 

  • Explore the market place.  Ask your current providers if they will be offering new programs under the ndis. Talk to them about new things you might be thinking of using your ndis funds for.
  • Snoop round see what other providers are offering, look up their websites and talk to service users about other services they use including things like physios, OT's and other things you might not been able to access before.
  • Try something new or visit a new place.
  • Talk to other about what things their thinking of putting in their plan and the services and suppliers their thinking of using. 
  • If your thinking of self-directing or self-managing talk to others who are already doing that and to others who are thinking of managing your package in the way your thinking.
  • Follow the journeys of others, sign up for ndis updates. 

How to choose your ndis goals?

This has place a major stumbling block for some and yet it is one of the easiest stepping stones in deciding your ndis pathway and your planner will help you with the wording.  A goal is usually something you want to achieve, like scoring a goal in a game of sport. Or you could thing of you ndis goals as the activities you want to be involve in.  Some examples are finishing high school; learning to drive a car; volunteering, learn life skills, getting fit or losing weight.

So think about what activities you do now.  If you or your child are still at school one of your ndis goals might be to finish school and the other to become more independent.  An activity like swimming or playing sport after school might help build your physical strength. 

This gives you, your goals and how you want to achieve them.

Goal one: complete schooling
Goal two: Improve independence at school and in the community.

Long Term Goal is to finish high school 

Activities might include: attending school, swimming lessons after school; attend sporting wheelies on the weekend. 

Support might be: Respite for mum and dad, support to do activities after school, weekly physio ans speech therapy, assist at school (in the classroom and pc at lunch time.)

Your planner will help you tease the rest out. Basically this what your ndis plan looks like. 

Add how you will manage your ndis package and the ndia will work out with you what supports you need. Your ndis planner will type up and submit your plan,  Once your plan is approved you planner will discus with you your budget and what the your package allows you to do.

So your a little bit older and may of finished a school a few years ago. You current use a range of services provided by a support provider(s).  Above is a photo taken in the art room of a service provider. We were members of a art group that meet on Friday afternoon. 

Two of us also accessed individual support from that provider and the other had support provided by another support service providers.  We all lived independently and all enjoyed art and wanted to sell out artwork. Under the ndis my hunch tells me our ndis plans looked very different and when I transferred to the ndis I chose to leave that service. I am now not so sure I made the right choice.

My Ndis Plan

Goal one: To build my visual art practise and find new avenues to sell my artwork.

Goal two: To purchase equipment that would allow me to work more independently.

Long term goal:  To establish Ignite Artist in view to possibly becoming a ndis provider.

I chose to partial self manage and ask for funding to access a Plan Manager to assist me to do this. 

Currently I purchase my direct support services through a support provider in my area.  This is not working for me so this week I advertised for my own support team.  I chose to do this through a recruitment and support agency. Other aspects of my ndis package are around increasing and maintaining my independence.

My solo art exhibition Melting Pot finishes at the Drawing Point Gallery on Saturday. I am currently working on art for the Ipswich Festival and applying for gallery space in Brisbane for 2019.

I access one on one support of daily living activities; physio and various aspects of my work in the art community. 

To date the most difficult part of my journey has been working in a new way with service providers and others services in developing working service agreements.

So you have your plan approved and you understand what you can spend your money on.  Whats next?

Choosing your providers and Service Agreements 

In Ipswich Queensland may participants felt pressure to decided providers once their plan is approved. My advice is breath. To begin with even if you thinking of changing services, reach a intern agreement this will allow to continue to use your current supports without change until you are certain on what you want.  

Even if you are not planing to make any changes you could ask for three months agreements while to settle into how the ndis system works. Under the ndis you will find you can access things that you might not been able to access before, such as physio and equipment. You might want to explore putting these provides in place first. 

On the ndis website you will find information on how to look for providers and a list of providers, with their websites. I found this pretty confusing, time consuming and frustrating.  Maybe try google, most ndis providers have the ndis provider logo on them. I suggest you snoop before your planning meeting.  

As an ndis participant you have the purchasing power and this is the major game changing. Your supports and when you access them is now you choice.  So if you elect to continue with current provider(s) talk to other participants about their experience.    

Services and Supplies are going to put the hard sell on you and their only going to tell you what they want you to know. They will reassure you they can meet your needs and make policy changes to suit you.  I was made promises my my provided that has left me very limited in the region I can access and transport continues to be a major issue for me as an artists wanting to extend my audience reach outside of Ipswich. 

In the past you would of signed a 12 month service agreement, now you can choose the period of the agreement  Give them 3 months make them show you they can deliver what you want.  You will need to prove you have the funds to purchase the supports outlined in the service agreements,  a quote must be attached to your agreement.  I still find service agreements one sided.  By law they need to provide you with a copy.  Even though I self-manage one of my providers has not supplied a quote or copy. Its with my Plan Manager. Most will not acknowledge I self-managed or I can make independent choices I find thus insulting as a small business owner. I probably understand the ndis better than them. 

Many providers depend on you for income so there going to want some control.  You may need someone to advocate for you.  Living with CP puts discrimination in your face every day. Luckily for me I can have fun analysis their behaviour, without giving that game away. 

Deb's top tips:

  • Gather information on service from other participants
  • Have short agreements 
  • If you not sure do not sign agreements 
  • Find and advocate or ask your local area co-coordinator to explain your rights to a provider.      
Hope this is helpful.

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