Submission 1467

What does the NDIS mean for you right now?

Right now, the NDIS has meant our daughter can access the supports and services she needs. When our daughter commenced with the scheme in approximately 2018, she was able to initially access supports such as Speech and Occupational Therapy.

Since this time her funding has broadened to include social and community participation funding that has allowed her to develop her independence and build her social skills by attending dance classes, discos and school vacation programs. The latest addition to her plan has been the Finding and Keeping a Job previously known as SLES funding. Our daughter is leaving school at the end of this year and was transitioning out of school into a supported employment program that gave her social connection while building her skills and work experience with the eventual goal of gaining employment. Without these supports our daughter would be languishing in a mainstream school, more than likely disengaged from her learning with little to no certainty for her future other than a life of isolation and reliance upon Government handouts. Thanks to the NDIS, we have been able to tailor her supports to her interests that have given her some amazing opportunities. She has represented her country in an all abilities dance competition and we hope these experiences and skills will help her to discover her passions and find opportunities that support that passion.

How do you feel about the proposed changes to the NDIS Act?

The proposed changes to the NDIS fill me with dread. The thought of having to be subjected to yet another assessment to determine if my daughter is sufficiently disabled to be a part of a scheme that to date she has been deemed to be a participant is terrifying and disturbing.

My daughter has a rare genetic condition, Williams Syndrome, that manifests in a deletion of genes on the #7 chromosome, is a life limiting condition, results in intellectual disability and has other physical characteristics. My daughter’s disability is permanent from birth, will not change and will not improve. We have supported our daughter to the best of our ability, advocating for her to ensure she has access to appropriate supports and to help her to contribute as she progressed through her schooling.

The impact of her disability means she has not accessed main stream education since Year 8, has not been able to complete school to Year 12 and while she is very keen to find employment, she will need support to achieve this. Employment for our daughter would not initially be full-time, mainstream employment, rather it would form a part-time flexible arrangement.

In order to access the scheme, we provided a diagnosis and also an impact statement of our daughter’s disability about her abilities and our family. Her disability has not

Submission 1467

changed, if anything certain aspects of her disability has meant these impacts are increasing relaƟve to her same aged peers. Why, then must we progress through yet another assessment to determine if she is eligible for the scheme? Why is this government placing families and parƟcipants through the emoƟonal rollercoaster of having to discuss the impact of their disability. How is a parƟcipant who has an intellectual disability meant to understand and explain the impacts of their disability upon their lives?

• Do you feel these changes have been explained clearly enough?

No, I sƟll am not fully aware of these changes. I keep seeing social media posts from varying sources, MPs, disability organisaƟons, news media etc so I do not know who to believe. I understand funding levels are being reduced to 2023 levels.

I also understand that the eligibility for the scheme is being changed resulƟng in at least 160,000 parƁcipants being deemed ineligible for the scheme, though this figure is being disputed to a much greater number. Those parƁcipants would be moved to a lesser scheme managed by the States. History shows us that when service provision is leŌ to the States that this becomes a poliƟcal football with poor quality service provision and lack of choice for parƁcipants. This is the very reason the NDIS was created in the flrst place. I am not aware of all the other changes that will inevitably affect my daughter.

• What would these changes mean for you, your family, friends, carers, or community?

We are already feeling the impact of current changes to the scheme. My daughter’s supported employment program is being ceased. As programs disappear, so do opportuniƟes for our daughter.

I am faced with the very real prospect of having to leave my full-Ɵme employment to support my daughter. I have only recently returned to full-Ɵme work, my daughter’s aƩendance at a supported employment program and transiƟoning out of school has meant I could return to the fullƟme workforce. I enjoy my work and was looking forward to build my superannuaƟon to prepare for reƟrement. Being forced to leave my employment to care for my daughter will mean I am no longer contribuƟng to society, and paying taxes, rather I will be seeking government assistance to keep a roof over my head and food on the table.

Submission 1467

• What would happen if your social and community supports were reduced or removed?

A characterisƟc of our daughter’s disability is her enthusiasm for social connection, impatience and community. Withdrawing those elements will increase her levels of anxiety and isolation. It is widely known that teens and adults with Williams syndrome oŌen experience social isolation, frustration, and loneliness despite their clear desire to connect to other people. By removing the opportunity to socially connect through supported core activities and programs means our daughter will be isolated at home with liƩle contact with other friends and family.

Dykens and Rosner (1999) found that children with Williams Syndrome oŌen appear as happy due to their sociable nature, however there are oŌen internal drawbacks to the way they act. A high percentage of children with Williams Syndrome were reported as believing that they either had few friends, or problems with their friends. This supports our experience with our daughter whose only social interacƟons outside of school is with other parƟcipants at the programs she aƩends.

We are increasingly concerned and worried that our daughter will become further socially isolated if her core supports are withdrawn or reduced.

Our daughter’s plan is relaƟvely small with funding in social and community supports forming a lesser part of her plan. This funding has allowed our daughter to aƩend all ability dance classes where her confidence and independence has grown. Over the course of the past few years our daughter has developed friendships with other participants, increased her coordination and strength and has become increasingly independent and confident. Our daughter who has aƩempted dancing in a mainstream high school which adversely affected her health and wellbeing, is now dancing with other participants in all ability compeƟƟons, represenƟng her country in all ability internaƟonal compeƟƟons, and is building her strength and coordinaƟon. She uses her social and community participation to aƩend monthly discos with a support worker. This is an acƟvity she loves she has made further social connecƟons and has built a great friendship with her support worker. This monthly activity gives us as parents a few hours respite knowing she is safe and enjoying herself doing an acƟvity she loves. Any remaining funding is used for our daughter to aƩend school holiday programs run by a disability organisaƟon. Again, we have tried mainstream school holiday programs, however these were not suitable for her. Without these funds, our daughter would have no social acƟviƟes in her life. She would be isolated, with no contact with other parƟcipants or be physically active. We have tried mainstream activities and have found them lacking in their ability to allow for our daughter’s disability. The loss or reducƟon of this funding will have a profound impact on our daughter’s social connection which is vital and of great importance to people with Williams Syndrome.

Submission 1467

• What would happen if your capacity building supports were reduced or removed —
  • or if you never had access to them in the first place?

We are experiencing first hand the impact upon the Finding and Keeping a Job funding and service delivery which falls under the Capacity Building Supports. The loss of the ORCA program due to current NDIS changes has meant the loss of a significant and unique program that filled a major gap in service provision in Brisbane.

The reason for the closure was given to us as below:

    "the NDIS environment is becoming increasingly complex, with rising costs
 and ongoing changes to funding models, compliance and regulaƟons,
  making long-term sustainability a significant challenge across the sector."

This quote was from the leƩer from the provider, Wesley Mission.

This closure will leave more than 60 families without SLES/work skills training supports for their young people. More broadly, there is already a severe lack of suitable services available for young people, and very few services provide the same specialised employment focused support that ORCA offers.

This vital and unique project provided important skills to our daughter and support for her transiƟon from school to post school pathways. The ORCA Project formed an integral part of our daughter’s post school pathways planning, something that is required in Queensland schools.

ORCA filled a criƟcal gap in Brisbane because there are very few services that genuinely combine skill development, community engagement, and direct pathways into open employment. The service aligns closely with the Government’s disability employment prioriƟes, including the Disability Employment Strategy and Employ My Ability framework, both of which focus on supporƟng young people with disability into meaningful careers and employment pathways of their choice.

The current structure has meant there is insufficient funding to sustain the staffing structure required to deliver effecƟve outcomes. However, without dedicated roles, The outcomes simply cannot be replicated, and many young people with disabiliƟes languish in day programs, or go on ouƟngs with support workers, but make no real progress in their lives towards employment and the beƩer quality of life this brings. EffecƟve employment support requires staff who can idenƟfy suitable opportuniƟies, support employers, and provide ongoing assistance to ensure sustainable employment outcomes. We already know that the broader DES/IEA sector has struggled to consistently deliver meaningful employment outcomes for many people with disability, as reflected in the large number of services that have recently lost funding.

Submission 1467

ORCA is one of the few services currently delivering genuine outcomes in this space, and losing it will represent a significant setback for participants, families, and the disability employment sector more broadly.

We had to heavily advocate with our NDIS Planner to ensure out daughter received the full Finding and Keeping a Job funding. We were originally told we would have to pay the gap in funding. Something we were unable to do. Is this the future for the NDIS? An insurance scheme like the private health sector where the gap fee is so prohibitive that families do not access the care or support they need? This is where I fear the scheme is being pushed.