Support Connection I Support Coordination I Specialist Support Coordination
I could finally relax and enjoy spending time with my sister.
My sister Louise was born with myotonic dystrophy, which is one of the most common types of muscular dystrophy. It is a genetic disorder, and our father had the same condition. Louise was fairly independent as a younger person, but as the myotonic dystrophy progressed, she needed more help. She developed gradually worsening problems with walking, balance, falls, breathlessness and fatigue. This made activities such as meal preparation, self-care, and accessing the community more difficult. Along with this comes some anxiety and loneliness, and the frustration of not being able to do all the things she wanted to. The NDIS was able to support Louise, and without it she would not have been able to continue living in her own home.
The NDIS is a wonderful scheme, but it is also challenging and difficult to navigate at times. Myotonic dystrophy is a progressive neurodegenerative disorder, so Louise sadly continued to deteriorate in terms of her health and functional ability. She always stayed positive and strong, but things were definitely getting more difficult. It was more difficult for Louise, and also more difficult for me as I tried to work, have a family, and care for Louise. It was such hard work trying to get plan reviews, funding, and then supports and resources in place. Even trying to get organisations and their representatives to communicate was a challenge. I desperately wanted to be Louise's sister and friend, instead of her carer and advocate constantly fighting for help. At one stage I thought that Louise may end up in a nursing home if we weren't able to get more help at home.
Then we found Little Blue Wren. They were highly recommended by a friend, and we arranged to meet with one of the coordinators of support, Tash. We were immediately impressed by her friendliness, professionalism, and enthusiasm. Louise and I quickly decided to join up with Little Blue Wren as our coordinator of support and service provider. It was such a relief and a breath of fresh air. Straight away there was action in terms of organising services to give Louise more independence and applying for an out of cycle plan review.
I could finally relax and enjoy spending time with my sister and leave the NDIS work to the CoS at Little Blue Wren. The communication was excellent. Tash was in frequent contact, always available, responsive to emails and phone calls, and visited Louise often. The funding and service provision was transparent and easy to follow. This hadn't been our experience with previous organisations. Sadly, my sister died earlier this year at the age of 48 but thank goodness we were able to connect with Little Blue Wren for the final stages of her illness.
It was such a relief to finally have a CoS and organisation who were happy and available to make Louise's life more comfortable and manageable.
I just wish we had found them sooner; I would certainly recommend Little Blue Wren to others.
Lisa Dark,
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"And as a Mother, I will sleep at night not worrying....."
I met Heather in September 2020, after Dylan’s care provider reached out to her to help me, I was in a rut. I am a full-time working Mum of 4 beautiful children, with Dylan my eldest at the age of 19. I was exhausted both emotionally and physically exhausted and didn’t know what to do or how to keep going. In a short time of Heather hearing our story, she offered her assistance and suggested we start with Occupational Therapy Assessments and Behaviour Support Plans for Dylan.
Heather also laid options on the table for Dylan’s future and gave it to me with no BS, she was straight to the point. I left that meeting feeling a little confused and not sure what to think. Then I thought, Nope, I like her she isn’t just a person behind a desk, she will get stuff done, I had nothing to lose anyway, so I engaged her services.
At first, I would never have thought Dylan could ever live independently in his own home, and that all I needed was just a break, but soon Heather had empowered me with enough knowledge and support to realised that Dylan has the ability to access Support Independent Living with 24/7 care and that as a 19-year-old, this would be great, firstly to maintain our relationship and secondly, to let him live as a 19-year-old, with an Intellectual Disability. I accepted this as a reality and with no pressure, Heather got to work finding us a SIL provider, she arranged a meeting with the provider in our hometown, and I got to visit the SIL house where Dylan could potentially live. It was great, I loved the house, and I could really see hope for Dylan being able to live on his own, in a supportive and homely environment.
In late November of 2020, I had suffered a major carer burnout, Heather went to work organising weekend respite and gave me hope that I may be able to spend some quality time with my other children and rebuild our family relationship again. Then we hit a bump in the road, Dylan’s Christmas respite cancelled. At this point, I just could not do it. I was desperate. I contacted Heather and advised her that I was ready to relinquish care.
Heather did not let me make the decision uninformed and again with no BS, she prepared me for what I was about to do and made me sit on it for a few days. I couldn’t do it, I couldn’t let my son go, and with that, on the 22nd of December, Heather advised me that she would take Dylan for 8 days to give me the carers respite and continue working to get Dylan’s plan reviewed for more assistance in maintaining our family and getting Dylan into Supported Independent Living.
In the time that I have known Heather, she has been there for me with Dylan, she advocates for what we want for Dylan and she has gone above and beyond her duties as a CoS to ensure our family unit is maintained. Heather has helped me see things differently and now I have hope that when Dylan is ready for Supported Independent Living he will be quite capable, and as a Mother I will sleep at night not worrying.
Dylan has a rare disability called, Alpha-thalassemia X-linked intellectual disability (ATRX) syndrome and he has also diagnosed with Spina-bifida and is currently being assessed for Mental Health Disorder.
This means Dylan has Dylan has developmental delay and severely limited expressive and receptive language skills. Dylan always requires significant level of support. Dylan requires assistance and
prompting during all tasks and supervision for safety during mobility and activity participation. Dylan’s cognitive and communication limitations result in frequent behaviours of concern. This syndrome also results in diminished muscle tone (hypotonia) which may be the cause of his lower limb weakness, knee instability and reduced chewing ability. Due to his disability, Dylan also has fluctuating levels of support at night, with up to 3-month periods of minimal sleep and poor sleep habits, resulting in exhaustion and reduced ability to actively participate in tasks.
