How does it translate to people with Autism Spectrum Disorder and their families?
Written by Dr Nancy Sadka
The National Disability Insurance Scheme was established to provide people with disabilities and their family choice and control over their supported funding. It is based on a business model where the person with ASD is the consumer who will be able to purchase services provided by different agencies to live his or her life to the fullest. Families and individuals with Autism need to be well informed on what to expect in terms of funding, support, and where to access tools which are necessary for planning under the NDIS. There is such an abundance of information about this subject on the social media and the different websites that at times it can become difficult to navigate and to sort out the facts from fiction.
On September 16, 2015 the government announced the full schedule of the roll out of the scheme in Victoria and NSW. “The NDIS supports people with a permanent and significant disability that affects their ability to take part in everyday activities…. It also focuses on early intervention where getting early supports can reduce the impact of disability on you or your child.” (NDIS explained)
This document contains information about the type of support and services that are provided to individuals with ASD under the NDIS in two different categories – early intervention services and reasonable and necessary supports for people beyond the early years.
Early Intervention Services
On May 2, 2014 the National Disability Insurance Agency released a document officially outlining the Disability Requirements for NDIS. This confirms that:
- People who have been diagnosed by a “specialist multi-disciplinary team, paediatrician, psychiatrist or clinical psychologist experienced in the assessment of Pervasive Developmental Disorders, and assessed using the current Diagnostic and Statistical Manual of Mental Disorders (DSM-V) diagnostic criteria as having severity of Level 2 (Requiring substantial support) or Level 3 (Requiring very substantial support) are included on “List A: Permanent Impairment/functional capacity – No further assessment required”. (Appendix A, p.7)
- People who have been diagnosed with Pervasive Developmental Disorders not meeting the severity criteria in List A including “Asperger’s Disorder, Atypical Autism or Childhood Autism” are included under “List B: Permanent Impairment/functional capacity variable – further assessment of functional capacity required”. (Appendix B, p.9)
- Individuals will be required to provide evidence of disability when they request access to funding under the NDIS. Families accessing the Helping Children with Autism package will be rolled over to the new scheme when it is available in their residential areas while new eligible families will become new participants under the NDIS.
2. The Time Line
For young children under the age of six the government in Victoria has announced the following: “Eligible clients … who are on the Early Childhood Intervention Services waitlist, will enter the scheme over the first two years of the transition. Access to a package of supports will be provided no earlier than 1 July 2016.” (Who can access the NDIS and the access checklist)
3. The Tools Needed for Planning
There are specific workbooks that will be given to families in a form of a “toolkit” to help in the planning process. However, these workbooks are not available for downloading until the family is actually accessing the scheme. The NDIA has published several documents to explain what will be covered and how to get ready for your planning process. Here is a list of the most relevant publications you need to be aware of:
- Planning and Assessment – Support for Early Childhood
- Factsheet – Early Childhood Intervention
- Factsheet – Teamwork in ECIS
- Factsheet – Supports the NDIS will fund for ECIS
- Factsheet – Supports the NDIS will fund in relation to Education
- Participant Statement Child
- Developing your child’s participant statement
I strongly suggest that you familiarize yourself with the above material and discuss the planning process with one of the Early Intervention Service providers. I had the opportunity to converse with one parent accessing Early Intervention Services under the NDIS in the trial area who gave the following recommendations:
- – Services will be funded when they are reasonable and justified
- – Services will need to be linked to specific goals in the plan
- – The plan will be reviewed within 12 months and it will be very difficult to change something in the plan once it is underway – so careful thought needs to be given prior to signing and agreeing on the plan.
- – Therapists need to report all data: goals that were achieved, how therapy was linked to them, goals that were not achieved and a justification on why there were not met.
Services and support beyond the early years
2. The Time Line
“Eligible clients who have the most urgent need for supports and who are on the Victorian Disability Support Register ….. will enter the scheme over the first two years of the transition. Access to a package of supports will be provided no earlier than 1 July 2016. It is expected to take up to 12 months for eligible people with disability to enter the NDIS once roll out starts in an area” (full schedule and access checklist)
3. The Tools Needed for Planning
As per the early years, families will have access to “toolkits or getting plan ready template” that will facilitate the planning process. However, families are encouraged to go through a pre-planning process; something that they can start doing now by using the first 4 publications listed below. It will help identify the existing support services as well as those lacking in order to reach the best outcome for a viable plan:
- Getting ready – Participant Pack
- Factsheet – Reasonable and necessary supports
- Participant Statement – workbook
- Planning workbook
- Managing your plan – Module 1
- Managing your plan – Module 2
- Factsheet – Transport
- Factsheet – Transport for children
- Factsheet – Higher education or vocational training
- Factsheet – Housing
- Factsheet – Employment
The above links are probably the most relevant ones for the immediate present but the list does not encompass everything about the services or planning process under the NDIS. Their official website is still the most reliable source for information and is updated on a regular basis for the latest news, forms, and publications.
The culture of support for people with disabilities is moving towards person-centred planning. Families and people with Autism across the lifespan need to consider this approach in order to achieve the best outcome for support and access to the community. Children, teenagers, young adults, and adults with Autism are individuals with their own unique identity and abilities. It is precisely that uniqueness that will need to be reflected in the type of funding and support they will receive under the National Disability Insurance Scheme.