The ABC of the ndis

STREET TALK

Talk on the street of Ipswich Queensland where the ndis has been rolling out since June is one of disappointment. Certainly I have experienced a few of those along the way myself.  However readers of my blog know this is not with the ndis itself, but service providers who are struggling to catch up with the increased demand for service's and adjust to the new thinking about how disability care should be delivered to participants.

Let's unpack the box as to why participants may be feeling disappointed and tools and resources that may address for issues.

A is for Aspirations. Some people say . . . I am 45, never had support, so why bother? 

You should bother because the ndis is about enabling you to live your best life, not just providing support in your home or to access the community. The ndis also provides assistance to purchase new mobility equipment, communication devices, things to make things easier in your home, house and car modifications and access to specialise therapies to improve daily living. These are great reasons to apply to be supported by the ndis. 

Much miscommunication existed in the lead up to the roll out. Many view the scheme as a welfare item.  This is certainly not the concept behind the ndis.  The ndis is designed to enable individuals and families to live their best life.

The ndis is a scheme for all Australians not just those living with disability. The scheme seeks to maximised the independence of those participating in the scheme.  True the level of disability of some participants means the will always be totally dependent on others. However where the ndia feels independence can be improved it seeks to support and grow this independence.

Why is it said the ndis is for all Australians?  The ndis seeks to address the social and economic imbalance for those living with disability and their families.  These families are more likely to live in poverty, be dependent on welfare, have poor legal representation and face discrimination. These are issues for our society as a whole. 

If the ndis can address these issues through empowerment of those living with disability and capacity building to help communities embrace inclusion.  Those directly accessing the scheme are known as participants, as the key goal for each participant is to be an active member who contributes to the social and economical development of the community as a whole. 

Contribution through the arts

Participants should be involved in the community at all levels. This could be through education, looking for work, employment, social participation, sporting activities, recreation, accommodation needs, health n fitness or anything that you feel will enhance you quality of life.  The ndis is all about participants making their own choices.

   

What do you need to life your best life? 

I am developing a passion for travel


How can you participate in the ndis 

There are 3 levels of participation for families and people living with disability. Discuss tends to focus around those in tire 1.  These are individuals and families who need specialised assistance to participate in the community and live their daily lives. 

You can directly access the scheme if: 

• You have  a life time disability
• Under the age of 65
• Who needs assistance with there day to day life.  (This does not need to be individual support, it could be assistance to purchase and maintain mobility equipment or assistance with just the heavy cleaning stuff)
• Are an Australian citizen or resident

Previously you and/or your family may not have been eligible for assistance from you state or territory government.  Let me reassure you the ndis is a game changer. We  have moved from a medical care model of disability to a model where individuals and families living with disability participate in the planning and selection of their own supports. 

You can check your eligibility on the ndis website  

From prescription to purchasing power  

There are two ways individuals and families can transition to the ndis.

1. In Queensland the Department of Human Resources will transfer you file to the National Disability Insurance Agency and the will contact you to variety your details, eligibility and set up a meeting with you ndis planner.  
2. Apply directly to the ndia. This is for people living with a disability that will impact on aspects of daily living tasks, education, employment and community living.  The ndis is the new way people with disabilities and their families are being supported to live their best lives. If you think you might be eligible for support under the ndis then step 1 is to visit the ndis website.

Choosing Your Pathways

Many participants have found the ndis pathways difficult to navigated and terminology difficult to understand.  The ndia has reviewed its process and made changes to how the service is accessed. So my path way may be very different to my own.

Certainly I have experience difficulties in finding things on the website, but you can also use there toll free number to speak to someone about the pathways involved in transitioning to the ndis.

B is for Be prepared. I feel that some of the disappointment being experience could be due to participants being under prepared for the change.  Nothing on this scale has ever been attempted in Australia before.   

Participants have a much greater role in the decision making around how they are supported and what they would like to be supported to do.  Services and service delivery staff are no long designing 'supports' for participants.  Participants should be asking for the supports they want to purchase from a provider of their choice.  Whether that be a direct service provider, a supplier of equipment or engaging a 'genetic' provider, like the local physio.

There are some rules around this depending on how and who you chose to assist you to manager yours funds.  We will explore this more fully when we explore making choices. If you currently receive support and want to continued to be supported then you need to transfer to the ndis. Even if you happy with the way you or the person you care for wants no changes. All supports are now funded by the federal government and the states will slow withdraw the services they have provide in the past.

So if your plan is to change nothing when you transfer to the ndis then write down your daily activity and the supports you use to do those things now. These are the things you need to discuss with your planner when you me with them. The best piece of advice I received during my preparation was life is not going to stop while you transfer to the ndis.  Once you begin the transitioning process everything happens pretty quick.  In my own case I was extremely unwell at the time and was considering legal action over a botched holiday. 

After pressing to transferring quickly cause I couldn't cope with my illness and 16 different workers from 4 different service providers. While I admit was essentially crazy in itself, I was also in the mists of just been diagnosed with a major illness and have a few hospital stays. I was not sure how I would of coped if I not prepared a step by step plan.

Let me assure you everyone is going want to meet you and shake your hand and even roll out the red carpet.  Each provider going to tell you how wonderful their service is and google is going to know what assisted equipment you are looking at buying.  The ads will pop-up in your news feeds on social media.  Like every other consumable in your life, support services will target you with their marketing.   

You will become the holder of the future of many organisations and they want your money, meanwhile to still need to get the kids to school; do the shopping and keep current supports in place until you transfer.  Your preparation should include a back-up plan.  I hope unlike me you won't need yours. 

My failure of plan A has nothing to do with the ndis and the transitioning process.  The service provider failed me because they were not prepare for the massive changes under the ndis, and hadn't hired enough staff. The lead up to the roll out of the ndis in Ipswich was all doom and gloom.  Clients might actually loss hours. If your yet to transition the following lists should be prepared.

Lists:

• List your current supports (Organisations, type of support, how many hours of support you receive, programs you attend, equipment, home and car modifications, and therapies you might want to access). 
• 'Supports' - are not one on one in home or community support sessions,  Supports are now anything that assist you to do the things you can not do because of your disability.  This may include, individual direct support, social group support, accommodation support, in home support, personal care, support to access the community; therapy support, respite care and much more.
• List the activities you do now
• List any activities you want to stop doing
• List new things you want to try.
• List service providers you like to know more about.
• List the people you can talk too about how they transitioned to the ndis

I believe many disappointments are the result of participants not being prepared, unsure about what they need and want to do, or do not understand that the ndis will only pay for the supports that relate to your disability.  Not things that everybody has to pay for like travel and accommodation.

Don't put the horse before the cart you ndis plan or the plan of the person you support is about:-

1. What things and activities you want to do
2. The way you want to do things
3. What types of support you want to access
4. Who you want to help you with managing your supports.

The ndis is not concerned about which service providers you will access or the names of your support workers.  Your first plan session is all about you and/or your family.

• How you function or don't function now?
• What are your natural supports and what paid supports will compliment these?
• How will you access the community?
• What assistance do you need with communication?
• What mobility or medical aids do you need?
• How can your independence in the community be maximised?

 
Who supports you and how is completely your choice. These are choices you can make once your plan comes back, and you know with the types of services your plan allows you to access.  Support providers are falling over themselves to keep participants and attract new customers.  So a person from your current provider(s) or prospective provider is probable is not the best person to support you through the ndis transition process.

Gather your supporters around you.

Every participant or family is entitled to a support person to journey through their transition to being the ndis.  It is best you ask someone who know you really to come with you to your first planning meeting.  For most participants this will be a family member. 

However there are advocacy services you can assist you, particularly if you feel your being rail road.  You always have the right to make a complaint and/or ask for a review. However the more preparation you the more confident you are going to feel. 

But you should have some sort of plan about who your going to ask to help you do certain things. Like get ready for work in the morning.  As the transition period can take as little as 3 to 4 weeks  However you can do what I did and using interim agreements while you make choices.  

C is for choice and control-  The Choices participants can make under the ndis should be the game changer. Participants and their families are now invited to actively engage in the planning of their own supports. 

This begins with meeting with you planner to discuss your goals and the way you would like to be supported under ndis.  When you receive you plan from the ndis it will have an amount of money for, how your package will be administrated; core supports (things like in-hone support; community access and centre-based supports); Transport needs; equipment and therapies.

What you plan includes will be determine by:- the supports you have now; what the gaps are in your current services, what actives you would like to engage in; how you ask to be supported; how your independence can be maximised and what you might like life to look like in the future; and how you would like to be supported to manage your funding. 

The ndia talks about 'goals' don't let this put you off.  This simply means the things you what to do, like play cricket and workout at the gym. So the planning process involves:-

1. Your short and long term goals.
2. Daily activities - (how to reach your short term goals)
3. How you want to do your activities.
4. What supports you need.

One of the reasons we talk about setting goals is the ndis takes a lifespan approach to your support.  Over your lifetime the ndia want you to be able to access the community as independently as possible. So if your child with autism is starting school next year, you might want to access an early intervention program or if your child has cp you might want a communication board or device. 

So under the ndis we are not just looking at the traditional 'supports' which the ndis calls you 'core' supports, but equipment, training, technology and therapies than can maxims your independence.  So now is a great time to think about the future.

Where do you hope your ndis journey will take you?

You may be happy to keep living with mum and dad or you might decide that you like support to explore moving out of home. The first step in this process might be to undertake some life skills training.  So when your preparing for your ndis planning meeting the types of support you ask for now. (this may not change at all), might look very different to the type of supports you want in 5 years time. 

My goal is to live independently in the community

The transition to the ndis is also a great time to think about learning and trying new things so the planner will ask you things around what new things you might like to try.

What lifestyle choices can you make under the ndis?

• Community engagement - This could be schooling, post school study, post school support services, employment, community work, sports and recreation, the arts and entertainment.
• Accommodation support - This could be in supported accommodation or one on one support to live in your own home. 
• Transport
• Equipment, medical aids, technology, and home and car modifications.  
• Assistance  that maximise your independence. 

Under the ndis you should never feel you don't have choices.  If you are feeling this way you might want to talk to an independent  advocate. Talk to your friends and family. Find the people in your life who will support you and speak up on your behalf.  If you are not happy with the plan given to you by the ndis or you think you will need more support you have the right to lodge and appeal and even asked for an external review. Transitioning should be a time where you learn to speak up for yourself or the person/family member you are advocating for.

Once your ndis plan is approved it is then time to decide what services you want to use; what types of support you require; when and how often you want to be supported.  These are your choices if your current support service is not listening talk to another provider. 

Give yourself options in case plan 'A' doesn't work out. It anyone is saying to you, this is the way we work. You can say, 'this is what I or my family wants, if you can't provide it we will be talking to  other services.  You may love your life the way it is now, but it never hurts to shop round.

Depending on how you choose to have your package managed you find this may open up new opportunities.  Package management can occur in a number of ways.  Over the years people with disabilities have established mist trust of government agencies so now you can choice between:-

1. Asking the ndia to directly organise your supports for you.
2. If your not sure you want a government department involved then you can ask a broker or host provider to assist you to manager your funds. 
3. Or you can take control of your package and self-manage.  Self-management allows you to manage the things you want to and ask others to do the parts you might find difficult.  Some participants are choosing to do everything themselves. 

Regardless of the way you elect to have your funds managed the cost of this will be provided by your plan budget.  If you chose to partially or fully self-manage then you are not limited to using a ndis registered provider. 

D is for do's and don'ts - Ensure you ndis plan is about you and your families needs.

The Do's and Don'ts of the ndis

A) Do ensure  your ndis plan about you and your families needs.

B) Do your preparation - think about the things you want to do and what you want your life to look like in 5 years time.

C) Do some research - even if you plan to stay with current providers find out what others are offering, or ask your provider what new services they may offer in the future. 

D) Do ensure you have good support around you while you are transferring to the ndis. Ask someone who knows you or the family well to attend your planning meeting.

E) Do advocate for yourself or ask someone else to advocate on your behalf.

F) Do hold service providers accountable. 

G) Do ask for short term agreements

Do Not!

A) Do not write a plan to suit service provider(s)

B) Do not let providers tell you - that you need to purchase all the services from them.

C) Do not rush because you funding comes through.  Use interim agreements until you are sure about your choices.

D)   Not about specific supports services, organisations or workers.  It's fine to know who will be supporting you but the plan is about you and your needs.

E) Do not be trapped into 12 month agreements and check exit details and fees.
F) Do not think you can not say this is not good enough. 

E is for explore - The ndis should be an opportunity to explore new horizons, learn new things and make new friends.

So whether your looking for change or content with life now, transitioning to the ndis will provide you with more opportunities.  I am a great believer in, how do you know there isn't something better out their if you don't take a peak.

This doesn't mean making changes. It might mean sitting on the computer and looking at the website of other support services and what they have to offer; Or visiting service expoes and chatting about the options; It might mean chattering to other careers from careers Queensland about how the use their ndis package to support their family member.  Or it might mean doing a basic computer skills course so you can use the ndis portal.

While you're on line you might like to check out the disability standards  . Each disability service provider must reach these by law. If you feel your rights are not being meant or your not getting the service your package is paying for then you have the right to make a complaint and the right to use an advocate.  

Until now most people with disabilities had little choice on who supported them and how they were support.  Under the ndis funding is given to the participant and they can chose who the want to provide those supports.

Regardless of whether your not happy with your planner or the service provider you eventually choose it is you right to make a make a complaint and/or ask for a review. However, before you do you need to ask yourself the following questions? 

1. Is it reasonable and necessary I receive that support?
2. Does the support(s) relate to my or your family members particular disability.
3. If you or you family member didn't have their disability would you need to pay for this support. (e.g. My family members need to pay their cpap masks and hoses.  Sleep apehia is not related to my CP, therefore its something I need to pay for.
4. The ndia also has a risk management duty of care. So it is unable to support any activity which places participants at significant risk.  This is particularly true for your choice around who and how you want your ndis funding to be managed.

F is for Financial managing of your package. 

Traditionally government departments have decided 'what type of support you needed and how much and assigned you a service provider'.  Now you are actively involved with your  planner in determining your supports.  Your plan will have a dollar amount attached to you plan.  You can then decide who will support you and how.

The money will not go into your bank account and you must spend the money as set out in your plan. You can choose who will assist you with this.

The way you can choose to have your funds managed are:-

1. The ndis can do this on you behalf. This means they will put you in touch with the provides you choose.  For most people that will be a provider they are already with.
2. You use a fund host provider to manager your funds. To avoid conflict of interest you might use a different provider to you direct service provider. Do not let your provider tell you the need to provide all your services.  While they might be able too, that impeaches on your right to chose.
3. You can self-manage your funding. Either by using a plan manage through a provide who will hold your funds for you and pay your invoices or open a bank account for your funding and applying for your own ABN.  The will be some reporting responsibilities and you will need to lodge a tax return.

Where a participant is under the adult guardian, the ndia will recommend they manage your ndis supports on your behalf. However you should still feel you able to chose the way you want to be supported and the provider(s) you want access.

If your sitting feeling like nothing has changed under the ndis and you're not more empowered then you've allowed others to take choice from you. In my experience, service providers are finding it hard to break old habits, providers are accustomed to controlling  the funding and how it was spent.

Do remember  - you ndis package is for you and can only be spent on your supports.  The company of person supporting you to administrate your funds will charge you fees as set by the ndis.  So if a host fund provider is assisting you to manage you funds, you still determine how and where your funds are spent.  As set out by the ndis agreement.  

If participants are not happy with the service they are receiving the can change services at anytime.  When you go to a service provider the will give you an agreement.  This with set our the services you are purchasing and how much of your package that will require. Before the ndis clients usually signed a 12 month agreement and had no say in what the terms of the agreement were.  Now participants can tell their provider what they want included in the agreement and the period of time they want the agreement to cover.  The provider will tell the participant how they can provide their services and how much those services will costs. If your not happy with the agreement you can as for changes or decide to other providers.

You do not need to sign a 12 month agreement.  You can set the length of the agreement and make your provider  earn your trust.  Even if you have signed a 12 month agreement you will find there are ways to end  the agreement.  Most providers will let you end the agreement by giving 1 month notice of intention to leave, if there is an ongoing dispute that can't be resolved then you may not need to given noticed,

Providers are not use to people with disability or families participating in decisions about their support needs and this is where I think may people feel the ndis and service providers have failed them.  Participants can now change providers as often as they like.  You no longer need to stay with a provider if you are not happy.  

This is where your 'plan B' will come in handy.  If you are prepared for things not playing out the way you hoped, then you can look at the list of others support services available in your area.  If you have not done this you will find a list on the ndis website. It will also help to stay connected to other participants of the ndis and cheek in with them about how their plans are progressing.

You should always be keeping your option open and definitely not closing doors. Remember the grass isn't always greener on the other side, you don't want to come back eating humble pie. 

I hope this posts assists you to understand a little more of the changes under the ndis and how to navigate around them. So you should have a plan B an know what else is available.