Playing our own Melody
The National Disability Insurance Scheme gives people living with disabilities and their families the chance to direct their own lives and thus includes planning for the future, in order to allow people to live their best lives. I know in Queensland until now their has been little planning towards 'what the future holds'?
Readers of my blog know that the policy around the NDIS and funding for disability care was a direct result of a campaign by people with disabilities, their families, carers and their supporters called 'Everybody Counts'. We were being asked to be counted in!
Prior to the commencement of the NDIS, disability support was largely around 'plugging holes' and enabling families to operate in survival mode due to lack of funning. For parents of a child with disability (including my own parents) this was a major concern for this child's future is their care after they are gone. Not all parents have children as autonomous as me.
However my informal supports after my parents death and what I want for my own life is a conversation my family has to have. So futures planning was born from elderly parents (that is some people with disabilities in their 40's and 50's) whose parents were still caring for their adult children at home.
"What happens when to my child when I die?"
People with disabilities are family members
Previously for many families who have adult children living in the family home received no government support at all after their child turned 18 (not even assistance with personal care). Post school options were limited to:
- sheltered workshops - where individuals were either employed and under paid.
- Low paid employment in the open workforce for those who could find it;
- One or two days a week in a respite day centre.
- eventually post school options became available
These post school options did little to encourage real participation in the community or working towards the best possible lives for people with disabilities. Rather the focus of respite day centres or 'day programs' were about giving parents a break from caring for there adult children. A chance to do the shopping, pay the bills and maybe time to relax and have a coffee. Gradually parents and significant others for adult with disabilities, this wasn't enough, and the aging process took a toll on the bodies and their son or daughters.
Being a participant means we are actively involved in the
community, making a social; economical or political contribution
As a society and therefore the Ipswich Community we come from 'a medical model or patient care' of disability care. This model:-
- Put everyone in a box. e.g Children with CP were automatically referred to the Cerebral Palsy League, where further boxes were assigned and a recommended paradigm of care was prescribes. Too often the file marked as 'no hope', special school until 18; then sheltered workshop; or day respite and/or residential care. A life map was handed to parents of a child as young as two years of age.
- The consensus of thought then was children and adults with intellectual disabilities could not learn, no matter what the degree of intellectual impairment was. Schooling was simply to meet the government's of the day requirement, that all school aged children attend school. At this time special schools did little to teach students or prepare them for life after school. To their credit some schools introduced, daily life skills courses such as cooking and basic cleaning to prepare them for 'community life' . Things like making a cup of tea and lunch fully supervised. Post school options were simular to all children born with disabilities.
- However not everyone is born with a disability. Disability can occur as a result of accident or illness. In some cases individuals are left with high-complex nursing needs. Meaning nursing homes became their only option if they needed 24 hour care. While totally dependent on others some of these young adults retain their high intellectual function. Moving into a nursing home at 26 was a life sentence. Other adults left with disabilities were given rehabilitation however employment opportunities remain poor.
- Life for those with disabilities whether from childhood or later in life meant life lived on the sidelines and sadly all too often this included family members.
The NDIS moves from a medical care model to a system where individuals and family members are actively encouraged to a participant in planning their futures. This includes the type of activities they chose to engage in; the types of supports the wish to access, who they want to access supports and services from and when they would like those services delivered.
Perhaps 'choice and control' were not the best words to use to convey this message to the general community. Choice doesn't mean people with disabilities can do whatever they want with tax payers money. The 'Choice and Control' model recognises that people with disabilities are not ill and thus do not require patient care. The only people responsible for the care of people with disabilities are their Guardians/unpaid carers, parents or adult guardian are the only ones responsible for the welfare of individuals with disabilities.
This is no longer the responsibility of service providers and certainly not support staff. This responsibility is separate to a 'duty of care' a worker or employee many have. Duty of care should never restrict personal choices. This is a major change in thinking for the industry to struggle with as the NDIS rolls out.
We need to be clear on what individual choice is and how that enables individuals or families to participate in their community. Like all parents, parents of a child with a disability want the best out come for their child. That a big responsibility to take on over a life time. For the first time the NDIS recognises we are all individuals and the 'tick the box' method failed many. There NDIS gives people the opportunities to participate in life at a level suitable to the level of disability.
The National Disability Insurance Scheme which encourages active participation and access to advocacy services, is the best way we can ensure the human rights of individuals living with disability are upheld. Under the medical care model of disability care we witness a system the covered up systemic abusive. This previous models with all their safety and security checks failed.
The best people to advocate for the support needs of the person with disability are the person with disability and/or the people who know them best, this includes family members and their natural support networks, not government or agency employees accept where individuals are under the public trust.
With advances in science and technology we understand a lot more about the human brain and therefore the true capabilities of individuals living with disability especially in the insistence where individuals are non-verbal. The absence of the ability to speak does not impair intellectual ability, where a individual has both impairment's the level of functioning may differ.
Traditional thinking was that children with intellectual disabilities can not learn. Today we know this is medically unsupported.
"If a child can not learn in the manner in which you teach,
Change the way you teach.'
If a person can learn to walk and dress independently, that is the only testimony that we need they have an ability to learn. I do not need a IQ test to tell me that a child can learn. What is up for debate is the best learning model for an individual child, and what learning content is appropriate. In some cases children with learning and intellectual disabilities are able to attend mainstream school given the correct learning supports.
However the method of education should be the decision of parents, not people deciding an individual probable post school. To my opponents I say. 'It works until it fails!' In terms of education we can always change the original choice - its ok to get it wrong. There is no correct map to follow to the future. If you have on can I have it? It would make life and decision so much easier. The deliberation of how to give you child the best chance in life in not limited to those who have children with disabilities.
So may be someone with a intellectual impairment is not going to hold Masters degrees, however few of us do. However we know some people with intellectual, learning and sensory disabilities are attending universities' in Australia. Post school options look very very different to what the were 10 years ago.
- Study after year 12
- Training opportunities
- Life skills training
- Sporting opportunity
- Community work
- Day services
- Recreational and group social activities
- Specialise support services like an supported art studio
- Supported accommodation options
- Roles in policy making and the legal system
All the things that enable individuals and families to participate in community life and living their best life. However, beyond this the NDIS looks at what gives individuals the most independence in their local community into the future?
This could be:-
- Is it assisted technologies,
- Modifications to the home or the family car
- Mobility equipment
- Developing independent living skills
- Moving into support accommodation
- On-going therapy support
To determine what this can look like under the NDIS, individuals and families are asked what their goals are or what are the things in life they enjoy the most. Choosing daily activities are the things all of us like to choice. We're not talking about choosing to buy a house here, but that's not to say it is not a choice for some people.
Most people regardless of their intellectual abilities, when you give them a list of activities can give you an indication of what they want to do. And that's where your planning for your future under the ndis planning begins. What do you want your life and/or the life of your child to look like? What daily activities do you want to engage in? These are the things that should determine your ndis goals.
The choices you are able to make are: the things you or your child needs assistance with; the types of support you want to access and who you want to provide these services. If you are new to receiving disability support services or not sure about choice of service providers to chat too you local area coordinator can assist and there's a list of providers available on the ndis website. Don't wait until your plans approved check on the net and see what's out there!
One of my life choice's is to work as an artists.
When preparing for my ndis planning meeting not all the advice was correct or helpful. I acknowledge some of my own advice was incorrect that's why I sharing my journey with you. I can't cover every aspect of the process for each individual classification of disability or age range. At different ages you or your child will have different needs. I think for me I am guided by those I know best and other service user's.
For some like me life under the NDIS isn't much different and that's ok. Just because we now can actively participate in making choices doesn't mean we need to make changes if where happy with life now. However it is important that we give people are given those choices and the information so the can make informed choices.
I now know in your first planning meeting the NDIA what to decide on two goals and a goal for your first year.
This year I want to extend my art practise
One step is this week I have artwork at Aspire Art Gallery, I am joining the ARTTIME Arts Smith venture and was in invited to exhibit in Springfeild's Arts Connect Exhibition. For me at a support level this has meant my support workers assist me to prepare artwork including putting pieces and delivering my work. Some is more work than fun.
Holidays are part of my looking after my health and wellbeing goals. (No the NDIA does not pay for this)
This is my second goal and part of my futures planning. Maintain my health keeps me strong and able to living independently, unless one day Mr Right comes along. Living a balance life is part of this and so is my annual leave. This week has been more about timetabling, physio, finding a new worker and gardner, service agreements and still trying to do my tax return.
Next week I booked in for a full body massaged (no that's not covered by my NDIS therapy budget.) Oh! Friday I booked in for my new wheelchair assessment! So like the rest of Australia I pay to make me dreams a reality. At a support level I needed one on one support to attend medical appointments and the NDIS is billed for my physio session.
So many of the choices I and other participants are making a mundane others like finding new support workers and choosing supports services and suppliers is more difficult. Navigating the ndis hasn't been easy. Its a whole new approach to disability care to empower people with disabilities to make wise choice. Service providers are accustom to telling us what their service are and how there programs work. Now we have a choice to sign that agreement or go elsewhere.
Employees hasn't changed their work practises and I am still squirming over is this the right physio for me and given up trying to contact my OT - whatever their name maybe so going with a provider to cover all therapies hasn't worked for me. A new spanner in the works is my GP won't give clearance for hydrotherapy due to poor seizure control.
The thing about choice and control and the NDIS is it does not over ride natural risk management controls. A service provider still needs a doctor's clearance for some things and some people fall under the Public Trust. The NDIS has its own risk management procedures. I needed to prove I had that ability to partially self-manage.
If I am using my funding too fast or too slow so my Local Area Coordinator with give me a please explain phone call. I have a lot of feeling pressure to accept the status quo and I CC my coordinator if contracted hours are not delivered so I can argue hours were not used due to staff availability.
The risk to participants was widely debate as both the registration reform was written and the roll-out timeline decided. The legacy of the medical model of disability care and the strong need for people with disability to be protected is still very evident in the disability sector. As Organisations, boards and staff struggle with what it means for people with disabilities to make choices about their own lives.
For services is about maintaining there service in a open market and delivering a service the people with disabilities and their families want to buy. Customers or participants now have greater power when negotiating the service agreements. Participants should ensure the agreement meets the needs and not how the service will be deliver. Something even I find over whelming at times.
Many service provides have been caught off guard and how acutely aware participants their rights and choices hey want to make. We are now looking for value for money and we demand a better deal.
In the scramble make any changes to existing supports, some people have been gives as little as three days, not aware services must provide supports until new supports are in place. The pressure to sign agreements and lock in service is high and completely over whelming, even I found myself making choices before I was ready and fully understood my purchase.
Stop! Don't by the hype! Don't go with all the marketing glossly cover or the wait there's more deals. Believe me their out there, a service survival is your money. There is no rush - purchase a money of support form your current providers or agency. BREATH, reflect, talk to others. The reality is unless the NDIA are managing your package you can extend current agreements until your ready. Services just don't want you to know that. You can ask for bridging agreements or interim agreements with current providers while the look at services offered by others. I did this for the first 6 weeks.
Personally I have encounter this old aged approach this is what we offer take it or leave it. The more time you take with your choices the more money the service is potentially loosing. To bad, you have the right to make that choice to ensure you get what you really want. Choosing from website and glossy flyers is difficult, why you not sure what you want or who the support staff will be. Do the thoughts and believes match that of that staff you'll be working with. I thought choosing a provider that offers physio/ot as a package seem the way too go. Now I really glad that the two services are interchangeable, allow me to use up my remaining visits and potentially move on.
My hot tips for the week are:-
- List your goals or things you want to do even it you don't think the relate to your NDIS goals. This list may assist you in choosing service providers or programs or even how to structure your own support team.
- Don't be caught by fancy marketing. Have a plan.
- What a list of what you want/need in witting
- Think about the type of staff you want to work with.
- Whether they're are an existing service or new service tell them what you want. Rather than list to what they want to deliver.
- Request interium agreements while you give yourself time to breath, it the NDIA are managing your package as for this as part of your package. Keep service agreements to maximum of three months. Don't be ticked and bullied like I was. If it happen to me then anyone can get caught.
- Be guided by people know you well. I am surprised about how much advice I am asking for my GP. But she has known me for 20 years. Talk to other service users ask about the staff members you might be working with.
- Know what is out there and what is possible. Not easy in the marketing jungle.
- Prepare your wish list and where you think you want to spend.
- While waiting for you plan to be approved talk to other providers and service users even if your intending to stay put.
- Use bridging agreements and/or short term agreements to help ensure the service is a good fit.
- Enjoy your future.