Lengthy Wait for some NSW babies and young children to access NDIS Plans
Children with disabilities who were not known to the NSW government before June 30th 2016 stand a good chance of having to wait until the NDIS roll out has been completed in June 2018 before they can access NDIS plans and the broader funding, choice and control that comes with that.
The Bilateral Agreement (as we understand it):
When the NSW Government and the Commonwealth Government signed the bilateral agreement to transfer all of the responsibility for the funding of disability services from the State to the Commonwealth there was agreement about the number of people who would transition during the two years of full roll out.
This number included everyone who was on the ‘magic list’ plus 6000 places for ‘new’ people.
The Magic List and ‘New’ people:
We call the list of people who were counted in the transition agreement the magic list because if a person’s name is on that list it seemed that they would automatically access NDIS funding. We are no longer totally confident that this is the case. We are trying to obtain some clarity.
The people who were counted on the magic list were anyone who was known to the NSW government to be accessing disability supports. This did not include the disability pension. It did include people who were accessing, or were on the waiting list to access supports from Ageing, Disability and Home Care; people who were accessing or were on the waiting list to access a non- government disability organisation that was funded by the NSW government and we thought children who were currently accessing Better Start or Helping Children With Autism funding as of June 30th 2016 – although we have heard this morning that unfortunately not all of these children have made it to the list.
‘New’ people are those who have been new to the disability sector since June 30th 2016. This also includes children who might have accessed Better Start or Helping Children With Autism funding but had outgrown it and had not been accessing government or non-government services at June 30th 2016. It also includes new babies born with diagnosed disabilities, children who have received a new diagnosis, all people who have acquired a disability such as a brain or spinal injury or have been diagnosed with a disabling condition among many other things.
The Early Childhood Early Intervention (ECEI) transition process:
The ECEI pathway to access NDIS funding is a very well intentioned supported process for families with young children to access the NDIS. The way it is supposed to work is that children who are showing signs or are known to have some challenges can be referred to an ECEI transition provider who will start some ‘soft touch’ supports to the child and family while it is determined whether they are eligible for an NDIS Plan. This process reduces the chance of babies and children falling through the cracks and is a more gentle and specialised pathway to the NDIS for families who are early in their story within the disability world.
If NDIS eligibility is established then the ECEI transition provider sends information off to NDIA to have a plan approved and funded. Once approved the family can choose a provider to deliver their services.
In most states the ECEI transition providers were chosen via tender.
In NSW, ADHC funded Early Intervention providers were offered the opportunity to become ECEI transition providers until June 2018. They would continue to receive some ADHC block funding to offer this service. Most, if not all of these providers are also NDIS providers. You can find a list of ECEI providers here. For children under 6 the ECEI transition partners are the pathway to the NDIS.
The Current Situation:
It seems that the 6000 places that have been set aside for the transition of ‘new’ people to the NDIS have been allocated or set aside for urgent / priority cases. These might be people who have just been discharged from hospital, people who are homeless or will be imminently homeless, child protection cases etc. The 6000 ‘new’ places are to stretch across the NDIS age span – 0 to 65 years across the two years of roll out.
The ECEI transition providers who were to offer soft touch intervention while families were waiting for NDIS plans to be approved are suggesting that they cannot fill this gap with ongoing frequent supports. The block funding that they were given can only stretch so far. Some are already reporting waiting lists. Some have not included therapy in their soft touch approach.
Remember that the ECEI transition providers are also expected to transition many of the children who were on the magic list to their NDIS plans (they are doing this in batches) as well as providing NDIS services to those who have already received a plan and have chosen that provider for their supports. Workforce issues are starting to play a part here too, experienced and skilled staff are becoming harder to recruit. Even if services had the funding to provide ongoing service there is no guarantee that they would have the staff to see them.
NSW Health have traditionally not picked up children who are considered to be better receiving services in the disability sector although some programs, such as those monitoring premature babies can sometimes offer some short term support. We have not reached out to NSW Health for a statement or information at this time.
Ageing, Disability and Home Care are not at this moment taking referrals for this age group. However with the whole of NSW ADHC community teams (therapy and case management) transferring to become providers with the Benevolent Society from August this year this situation might change. They would, of course, still have to be funded somehow in order to do this.
As far as we can tell, most ‘new’ children stand to wait to access NDIS services until after June 2018. NDIA have provided us with the information below.
NDIA’s response to our inquiry:
We are grateful to NDIA for providing us with responses to our questions. Please see our interpretation following their response below.
Is there a gap for children trying to access early intervention in NSW?
We expect children with a newly diagnosed disability and who live in NDIS rollout areas to access support through the NDIS Early Childhood Early Intervention (ECEI) approach. They can receive support through an NSW ECEI Transition Provider.
The ECEI approach is how the NDIS is working to deliver early childhood intervention for children aged 0-6 years. It is being implemented in line with the scheduled full-scheme rollout of the NDIS.
ECEI is active in the year 1 rollout areas of NSW – places where the NDIS began to be available from 1 July 2016.
NSW ECEI Transition Providers offer specialised early childhood supports for children aged 0-6 with a developmental delay or disability, in order to promote development, wellbeing and community participation. NSW ECEI Transition Providers, based in local communities, are the primary point of contact for families of children 0-6 years of age who have a developmental delay or disability.
NSW ECEI Transition Providers will continue to work in partnership with the NDIA Regional Office in their area. This includes identifying any child who requires urgent planning and managing this need within the phasing schedule agreed between governments.
Will they have to wait 18 months for assistance (in the form of an NDIS plan)?
We expect eligible children to get support through an Early Childhood Transition Provider in areas where ECEI has begun. The NSW ECEI Transition Providers will provide initial supports which may include information and linkages along with short-term early childhood intervention. The NSW ECEI Transition Providers will also identify children who require more long-term early childhood intervention supports, provide assistance to access the Scheme and if eligible support the development of an NDIS plan. Planning conversations will then be managed in line with the agreed phasing schedule in each region.
Can these children get Better Start/HCWA children in the meantime?
Once the NDIA’s ECEI approach is available in an area, Commonwealth programs such as Helping Children with Autism and Better Start for Children with Disability will not be available to new applicants.
This has happened in the Hunter and Nepean / Blue Mountains sites in NSW, and will happen shortly in further sites where ECEI is operational (see NDIS website at https://www.ndis.gov.au/about-us/our-sites/NSW.html#ecei).
Families with newly diagnosed children should contact their local NSW ECEI Transition provider for support and appropriate referrals. In NSW year 1 areas, this means contacting a NSW ECEI Transition Provider in their area. This information is available on the NDIS website or by contacting the NDIA.
Within the phasing schedule, families are able to access the ECEI for their child and be considered for access to the NDIS if this is an identified need. While a family is waiting for a planning conversation, the NSW ECEI Transition Provider can provide some initial supports including linkages to mainstream and community services
What does the response above from NDIA mean?:
We notice that the statement is very careful not to say that there will be no delay in accessing NDIS funding. It does state that the ECEI transition providers are responsible for providing services to this group of children until their NDIS funding has been approved. As we have already mentioned above there are serious questions about capacity for those organisations to provide frequent ongoing supports. So what the NDIA are saying here is that while families are waiting to have their planning meeting or for the plan to be approved there is still access to supports but it won’t necessarily be via an NDIS plan.
It notes that ‘while a family is waiting for their planning meeting’ they can access supports via the ECEI provider.
This also means that unless a family can afford to pay for private services they will have no choice of provider until their NDIS funding is approved.
It also means that just because a child has been determined to be eligible for and NDIS plan, they will not necessarily get their planning meeting and progress to an NDIS plan in a timely way.
There is no timeline mentioned for when access to the NDIS Plans will happen in the statement supplied by NDIA.
What we still don’t know: How much service will the ECEI transition providers be able to provide to the children stuck between NDIS eligibility and Plan?
What services will the ECEI transition providers be offering the children stuck between NDIS eligibility and Plan?
How will things like equipment, technology, respite etc be accessed by the families stuck between NDIS eligibility and Plan?
How will this affect the growth of the market – with new NDIS Plans bottlenecking until the NSW roll out is complete?
How will workforce issues impact – the ECEI transition providers will have a growing caseload while other providers may have capacity. However their contract only extends until June 2018 which might impact their ability to attract talent to their businesses.
How will the inevitable waiting lists be managed?
This week we have heard from a parent who has relayed her frustration with the process. Her daughter who is five, was diagnosed with a disability in July last year. Her NDIS eligibility came through in October. She waited several months for a planning meeting and after complaining was told to contact one of the ECEI transition providers. She was placed on a waiting list. They were told in February that the ECEI transition provider could only provide NDIS plans for children on the ‘list’ (sound familiar?). A complaint to the Ombudsman resulted in a call which informed her that it was up to the ECEI transition provider as to how much service they would provide to her daughter while she waits for her planning meeting.
Consider children like this who by July 2018 will no longer be considered to be in the Early Intervention age range which greatly affects the type of plan that they might receive.
The evidence is clear that the earlier a child is able to engage in intervention the better the outcomes for them in the long term. There are clearly some risks with how Early Intervention is rolling out in NSW.
We suggest that families try and take advantage of Better Start and Helping Children With Autism funding while they can.
Medicare plans may also be an option for some short term support.
It is disappointing that babies and young children stand to be caught up in what is an issue sitting with decisions made when the NSW government decided how they would manage the transition and roll out from State based to Commonwealth based disability funding.
The above is reprinted with kind permission of Chantelle Robards of ESPY Connect
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