Reach Out, April 2016, isue 103

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Personal Stories Tuberous Sclerosis Complex and the National Disability Insurance Scheme Les Cope, father to Adam, who has TSC people with disabilities and their families have been sharing notes through social media. One of the facebook groups, NDIS Grassroots Discussion 2 has over 10,000 members. A wonderful resource of people, many right in the middle of the action and others looking on. All learning. The NDIS uses planning and a goal setting structure to assist participants. To ensure you are prepared when you first meet with a planner, start thinking of the planning process now. Start small and consider some ideas, goals and plan over time. Here is a structure you might use to get started. A Planning Process Eight Domains The NDIS uses eight key domains to define specific areas for planning and resources. These include Daily Living, Home, Relationships, Health and Wellbeing, Lifelong Learning, Work, Social and Community Participation and Choice and Control. The diagram following shows the domains and the individual. People with tuberous sclerosis complex (TSC) may be eligible to request support through the National Disability Insurance Scheme (NDIS) when it arrives in their area. Having TSC does not automatically mean supports will be provided. It will depend on how TSC impacts on the individual that determines if, and how much support is provided by the NDIS. TSC may impact on some individuals through epilepsy, minimal or no communication, autism, apraxia, cognitive difficulties, intellectual impairment or challenging behaviours. So, how might you prepare for the NDIS to ensure your needs, or those of your child will be supported when it arrives? Preparing for the NDIS. It’s my understanding that if you are already receiving support, when the NDIS arrives you will be notified and will need to register with the NDIS. If you are not receiving supports you can still register. There are NDIS trial sites currently in most Australian States with the full roll out expected by 2019. The NDIS Access Checklist 1 is a good place to start. You can find if your state is currently in a trial area and/or when it is transitioning to the full NDIS. It discusses briefly the type of supports you might receive including early intervention. It provides a number of useful links including registration and contact details to talk directly to someone if you are unsure or need more information. The good news is that TSC is one of the identifiable conditions recognised by the NDIS. At some point you will meet with a NDIS planner who will ask you a lot of questions to gain an understanding of your situation. Again it’s how it impacts on you that will be key to receiving support. A large number of Whilst not a full list the NDIS will provide supports with professional advice, support people or carers, equipment, assistance with all activities of daily living in the home and community, work support and the ability to be in charge of your life. The NDIS does not provide assistance for health, education or housing. These are the responsibility of those government departments. There are some cross over areas however such as transport to school and specific health related areas that might be a direct result of a person’s disability. If once a person left school if he/she needed a support person to attend university or further study, the NDIS would assist with this. The support is to assist the person and not to provide the education. Getting started I recommend you begin with a group of family and/or friends and brainstorm ideas. Appoint someone to write the comments and use large sheets of paper to write down the information that comes from the group. No initial discussion, just write down all of the ideas as they appear. Here is an example of a brainstorm to show 12 Reach Out
Personal Stories you how it might work. If you have trouble starting you can use the eight domains as starting points. The following brainstorm example uses a central circle for Alice who has TSC. You need to consider your own needs and ideas when working through this process. When Alice’s support group met they identified specific points that were relevant to her. The black items focus on points that Alice and her support group felt were important. From these items the group then considered the areas where Alice needed support. I have included family members, who are very important to Alice. Each family member has skills; interests and personal relationships with Alice. For example, Alice’s sister Jane also loves books and is an avid reader. She could be a key person to read to Alice as part of her learning and listening needs. There will be many other areas where family is important. Using this basic example as a starting point, what are some of the supports Alice might ask for from the NDIS when a meeting takes place? I have put these into a table on the right, so they can be understood and managed. Need How? Who? No friends • Engage Alice in more community activities to start building a circle of friends Family Community Parks and walking Fine motor skills Communication Learning Epilepsy Health • Take Alice out walking regularly. • Engage with people on the way (friendships) • Professional advice and assessment • Develop areas that Alice is interested in. • Speech therapist assessment and advice. • The therapist might recommend Alice would benefit from an ipad or similar communication device. • Reading books • Encourage speech while reading etc. • Administer and ensure medical needs are met Family Friends Support worker NDIS NDIS Occupational therapist NDIS Having a professional report is one of the requirements from the NDIS prior to releasing funding. Family School Community Family This is a snapshot only. Everyone has different needs. I have not touched on other aspects such as incontinence, toileting, behaviour management etc. These are areas where the NDIS has the capacity to assist if they have the information. This might be through professional support, support worker/carer or even equipment. Some of the changes once the NDIS arrives Goal setting: You will need to consider goals that can be achieved with support. Alices’ goals might look like this: Goal one – For Alice to extend her circle of friends Outcome – Alice will have made new friends by the end of the year Strategies - Engage Alice in the community, Investigate local clubs or groups that Alice might be interested in. (brownies, library reading groups etc.) Goal two – For Alice to become more physically active Outcome – For Alice to wall independently unaided over 100 metres. Strategies - Join local walking groups, Use local parks for daily walks. (also assists goal one - meeting others) Goal Three - To improve Alice’s communication skills Outcome – Alice’s will know at least six new signs and be able to use them appropriately Strategies – Speech therapist assessment and advice, Practice aspects of speech linked to her other activities. i.e. Use communication and talking at all times. Keep a basic diary, start small, think big. Respite Respite is now covered through the NDIS. There are three levels of respite provided. Level 1: 7 to 14 days per year to allow the carer to attend key activities Level 2: 14 to 28 days per year and includes a strategy to build capabilities for future independence. Level 3: Equivalent of 28 days per year, when the carer provides support most days and informal support is at risk of not continuing due to the intensity of the support required or severe behavioural issues. More information can be found on the Carers Australia website 3. Self manage You will have the capacity to self manage your funding and support needs if you wish to or you can use existing agencies for support. National Disability Insurance Scheme Act 2013 The legislation that determines how the NDIS is to be governed and controlled through Parliament can be found on line. 4 References A number of links are provided here. At the time of writing, Feb 2016, all these sites were accessible. If a link does not work, use Google or any other reliable search engine and type in any of the names below. NDIS Access Checklist: www.ndis.gov.au/ndis-access-checklist NDIS Grassroots Discussion Face-book group. www.facebook. com/groups/239631286154106/ Respite provided through the NDIS www.carersaustralia.com.au/ndis-and-carers/carers-in-thendis/#respite The NDIS Legislation Act www.comlaw.gov.au/Details/C2014C00386 13
Page 1 and 2: Reach Out APRIL 2016 ISSUE 103 Cele
Page 3 and 4: TSA News A Farewell Editorial David
Page 5 and 6: TSA News Thank You David Matheson h
Page 7 and 8: Events Epilepsy and TSC Information
Page 9 and 10: Events Sclerosis Conference Interac
Page 11: Personal Stories The Rollout of the
Page 15 and 16: Personal Stories Insurance Adventur
Page 17 and 18: Personal Stories Our experience wit
Page 19 and 20: Personal Stories New TSC Research a
Page 21 and 22: Information Help us shed light on t
Page 23 and 24: Fundraising Thank You to Our Suppor

Reach Out, April 2016, isue 103

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