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Greetings

Welcome to the Winter 2022 issue of eContact. We are all still facing many challenges in this post COVID period. Lockdowns maybe behind us and we can start to meet in person, but for many families the return to normal is very slow with loads of new challenges. One of our members has shared their journey in Your Voice. In NDIS Matters we have a look at what the incoming Minister responsible for the NDIS has been saying post-election – there is certainly a positive vibe within the disability community.

eContact will evolve over time in response to current issues, concerns and your feedback. The AFSA committee welcome your suggestions and input – send us a SMS message to 0421 642 364 or email contact@afsaconnect.org.au

1. AFSA 2022 Annual General Meeting

At last, we can have a proper AGM and to celebrate it will be followed by a light lunch and guest speaker – Samantha Dooley, Victorian State Director, NDIS Quality and Safeguards Commission. Our AGM will be held in the Panorama Room at the Mulgrave Country Club, corner Wellington and Jells Roads, Wheelers Hill on Tuesday 16^th August, from 10:30am to 1:30pm For catering purposes please book via the Try Booking website here – there is no charge. Friends and family are welcome to attend but please make alternative arrangements for the care of children and your family members who require supervision and support. AFSA members will receive a formal AGM notice and electronic copy of our Annual Report via email in late July as well as a nomination form for those interested in joining the AFSA committee.

2. MY SAY – AFSA Members Survey 2022

The Autism Family Support Association, AFSA, is the voice of Victorian families and carers with a family member or members diagnosed with an autism spectrum disorder. Surveys are a useful tool to develop a picture or profile of who we represent and identify your key issues. With over 260 member families our My Say AFSA Members Survey findings should provide us with sufficient data to be an authoritative voice to government, policy makers and service providers.

This survey will help us prepare a detailed demographic profile of our member families – where they live, their family structure and what services and supports they access on behalf of their family member or members with an autism spectrum disorder. The data will present a picture of past, present and future requirements.

Click here to start the survey

We do hope you will take the time to complete the survey. It should take between 10 and 20 minutes to complete and is located on the secure Mail Chimp survey platform. It is confidential, totally voluntary and you can choose to remain anonymous. Part Two of the survey gives you the opportunity to comment on your experiences and make suggestions to the AFSA committee. Future surveys will cover more specific topics such as education, adult services, the NDIS and Supported Disability Accommodation.

3. Recent AFSA Events

Dinner at the Angliss Restaurant – nearly 70 AFSA members, family and friends enjoyed a superb 3 course meal in early June. Here is one happy group – there are more photos on our website.

AFSA/Carers Victoria Carer Retreat – eight AFSA members participated in this three-day intensive counselling retreat provided by counsellors from Carers Victoria. From one participant - “The carers retreat was way beyond amazing for me. The program covered very important topics with self-care being a big one. Lots of time to reflect on how we take care of ourselves while taking care of our loved ones who live with so many different challenges.”
AFSA/VALID Succession Planning Course – ten AFSA families participated in this four-part online course. “I found the program extremely helpful and I now have a better understanding of what we need to do going forward. Knowing what resources are available is reassuring and I now have some direction for the future.”

New Government – New Minister – New Hope

The newly elected Labor government’s appointment of Bill Shorten as the Minister responsible for the NDIS produced a sense of great optimism in the disability community. Mr Shorten has been an integral part of the NDIS political journey since the scheme was first mooted and he has a strong awareness and understanding of the challenges faced by people with disabilities and their parents and carers. Here are just a few of the many positive comments he has made on taking office:

There had been a “catastrophic erosion of the trust between the disability sector and government”, and the new federal government would work to restore that trust as a first step to rebuilding the NDIS.
“Now we have this exciting opportunity to return the NDIS to its original intent. The intent of the NDIS was to value people with disability, not measure their price in a rationed budget. The intent of the NDIS was to see the whole person, not just their impairment.”
The new federal government would be focused on the “quality of the spend” on the NDIS, rather than purely the bottom-line.
Addressing the growing number of cases at the Administrative Appeals Tribunal, Mr Shorten said he wanted to “find alternative, less costly ways to resolve disputes … If we can tackle both the legacy cases and provide a better, fairer future process to people who want to appeal decisions, this will help significantly rebuild the trust of participants, their families and the community at large”.

These are some of the elements of the new Labor government’s NDIS policy that reflect the many concerns expressed by AFSA members:

improving the design, operation and sustainability of the NDIS
stopping cuts to plans
lifting staff caps at the NDIS
clamping down on fraud and waste within the scheme
improving the planning and appeals processes.

The President and members of the AFSA committee are continuing to advance the AFSA Advocacy Action Plan. This has involved distribution of AFSA statements, writing letters, preparing submissions, requesting and attending meetings (many still electronic). The areas we are currently focussing on are disability services for adults, individual advocacy services for families and disability workforce and service provision. This involves engaging with several government departments and agencies at the state and federal level.

Our experience with COVID – an AFSA parents’ reflections

Our daughter Emily is thirteen diagnosed with Level 3 Autism and severe intellectual disability. Prior to COVID she attended school each day and loved going to local community events and a kids cooking class at the neighbourhood house. She is a social kid and absorbed the happy vibe of these activities. But since the start of the pandemic many of the activities Emily previously enjoyed have stopped and not resumed. Support shifts are cancelled far more frequently now on our side and the support worker side as we try to keep each other COVID free. We were so looking forward to the recent AFSA dinner but had to cancel as we were not able to secure a support worker for the evening.

Weekend and school holiday respite programs stopped during the pandemic and have not returned. Emily’s behaviours have become harder to manage and I think there’s a large element of her being bored, along with all her sensory issues and lack of understanding as to why things can’t go her way all the time. It’s impossible for us to get anything done when she’s home - she’s cranky and possessive and bored and so over it - which in turn impacts the coping and mental health of the whole family.

The pandemic has had an incredibly detrimental effect on the ‘typical’ population, but an even greater impact on people with autism and intellectual disability. If Emily gets a cold now it has far greater implications. Pre COVID if Emily had a slight cough or the odd sneeze, but was not sick as such, she could still attend school and other programs. Since COVID, if those symptoms are present, however mild, she has to stay home as she will not tolerate a RAT test.

For Emily, all these huge changes in her life due to COVID came along at the same time as puberty. Not good timing! She couldn’t and still can’t understand why she cannot do all the things she used to enjoy. COVID is a serious condition and we have no problem with the requirements and restrictions, but they complicated the life of people like Emily and families like us so much more than for others. The NDIS did not care that plan funds weren’t used due to the pandemic and programs not running and therapists not available, they wanted to cut her plan regardless. It was only because we had a great advocate present in our daughter’s NDIS plan review meeting that her funds weren’t cut.

Meet an AFSA committee member – Michael Tucker, President.

I have been on the AFSA committee since 2016 and President for the last 5 years. I have met some incredibly dedicated members through my AFSA involvement who work tirelessly to make better lives for their family members with autism. In recent years AFSA has tried to devote more effort to advocating for those with complex and high support needs. Through excellent collaboration within Committee (they don’t hold it against me that I barrack for Collingwood!) we bring examples of our own lived experience to Governments and decision makers to seek improvements in services and Grants for activities for AFSA members.

1. Linking Carers to Vocational Opportunity Project – Community Houses Association of the Outer East. This project is funded by the state government Strengthening Local Communities program to assist carers who want or need to consider getting a job. You can also find them on Facebook.

2. Access Ability Australia – Access Keys Project and many other resources to assist with communication and community access.

3. Alfred Health Services SPEAK Project – The SPEAK Project aims to improve the health and hospital care for people with disability with a focus on autistic people, people with intellectual disability and people with communication support needs. They are currently calling for participants to be part of their co-design group – this will involve up to seven hours a month until December 2022 and the project will pay participants $30 per hour to attend. Full details are here.

4. Carers Victoria Carer Wellbeing & Connection five week online therapeutic program for carers – next program commences 18^th July 2022.