Brodie was diagnosed with Adrenoleukodystrophy (ALD) in 2004 followed by testing to determine his younger brother Dylan carried the same terrible gene. Brodie had no issues for his first 8 years and in the first 6 months after diagnosis, he was faced with a devastating and rapid decline in his body’s abilities, ending in his need to be in a wheelchair and continuing regression of his independence. We linked with the Montrose and Xavier organisations and received wonderful assistance with Brodie’s growing needs until aging out at 16 and 18. Brodie transitioned from mainstream school to special school with amazing bravery and dignity. Up to the age of 18 we underwent multiple equipment trials and fittings to make Brodie’s life a little bit more comfortable. During this time, Brodie developed Scoliosis, we investigated surgery but it wasn’t a viable option for Brodie as it would only lead to probable complications. We continued to deal with each issue as it arose with great support from the organisations and his school.
In 2012 Brodie did his final year of special school. In October of that year, I contacted the school to find out what happens after he leaves the school system. They explained that I needed to contact DSQ to access post school funding. I did this, explained the situation and received the forms necessary for the funding. I completed the forms and returned them the following week, and was then told that we were too late for the funding as it closed by June of that year and so he missed out. I registered with DSQ and Brodie was due to have an assessment in February of the following year. In the meantime, I had no idea what Brodie was going to do after the Christmas break as far as his social interaction was concerned. I contacted DSQ and was told they couldn’t do anything until Brodie had his assessment and we would just have to wait. I phoned around to several day service agencies in our area and was told we could self fund with the cost being a couple of hundred dollars per day. Certainly not within our reach. One agency mentioned HACC funding to me, so I started over trying to find an agency who could take Brodie using this option. I was towards the end of my list, basically in tears on each call due to the frustration and then came across Horizons in Margate. They were in the middle of their Christmas party on the last day before closing down for the Christmas break and took pity on me and made an appointment for us when they came back in the new year. We were very lucky to receive 3 days per week and I was ecstatic that Brodie had something to look forward to each week.
In February Brodie had his assessment. By this stage in Brodie’s life, his personality and smile were constantly shining, however his body was letting him down and he needed assistance for basically all functions. We had his assessment in the Caboolture office of DSQ and went through the checklist of Brodie’s needs and abilities. Again the final result was sit and wait, Brodie is at the top of the list and we will let you know if something comes available. Brodie began his time at Horizons and I made fairly regular contact with DSQ to get something more for him. I don’t have records on hand and my memory is a little hazy for a while here. Brodie stayed at Horizons until 2015 when we made a long awaited move to the Sunshine Coast. According to DSQ records Brodie received funding in August 2013. I don’t recall learning of funding until either later that year or the following year when I received a call from our case worker at DSQ letting me know Brodie’s day service would be covered by a different funding option and should give Brodie more time at the service. We were all excited for Brodie, however the extra day didn’t happen and things didn’t change, but that was okay, because we thought his 3 days were awesome.
In 2015 we moved to Tewantin and while settling in my first thing to do was to start the ball rolling for wheelchair modifications, and before doing that our first step was to find an OT to make it happen. We got that process underway and then I started calling day service centres on the coast so he could start interacting with others again. It was while I was calling around that I discovered that the funding Brodie was using at Horizons was actually his package and the amount was just over $15,000. I had a couple of the agencies come out to the house to visit with Brodie and went to visit another couple. What amazed and frustrated me for Brodie was that all agencies would only offer Brodie 7.5 hours of service per week for the amount of his package. All agencies would only charge him at the one-on-one rate and wouldn’t consider a group or shared rate even though I assured them he wouldn’t need to be changed, (as he wears nappies and would be double nappied because he didn’t like being changed by others) and would not even have to feed him most days as he would eat when he got home. I was continually told that to get Brodie more time, I would need to get more funding from DSQ. We were now transferred to the Maroochydore office, and I thought with our new case manager, Marielena, we might make some progress for Brodie. I contacted them several times during this process and was told that there was no extra funding for Brodie. I then asked for a reassessment and was told there would be no purpose in it as there was no funding available. We went with Sunshine Butterflies as they offered Brodie 4 hours, 3 days per week. This was possible, not because of any additional funding but because Butterflies has a link with Anglicare which allows them to cover the cost of additional hours. We went along pretty good for the following year.
In 2016 we moved down to Maroochydore and we had to start over again. I contacted all of the day service centres that I could find from Doonan through to Caloundra. Everybody who would accept Brodie would do so using his package, and at a massive $16,720.45 would buy him one day per week. Again, I tried explaining there is very little needed in the way of personal care, he should be able to pay at a group or shared rate. Again, I was told the only way to get more hours is to have more money. This time, there were quite a few calls made back and forth to DSQ, usually ending in frustration and/or tears. I started to try a different method of attack to see if there was any spaces available under Community Funding and I could pay a co-payment. I got my hopes up with Blue Care and Suncare day services, however both came back saying Brodie was too high needs. I tried in home so maybe somebody could come and take him out. Nope, that wasn’t an option either as there was no car that could carry Brodie, and they would come to the house but not take him for a walk. Our goal for Brodie was for him to get out and about with others so he could make new friends. We went with Scils, Brodie clicked straight away with Paul and Jonas, I believe it was 1 day per week at first, trying to get extra through sharing. Just after making this decision we heard back from Multicap who offered 3 days per week. I thought it was awesome, but Brodie had already made friends and bonds at Scils, and was determined to stay at Scils. It wasn’t too bad, because we had the possibility of more hours to come about at Scils. This did come soon after, Brodie was now going 2 days per week.
Off and on I would make contact with DSQ to keep trying to get more funding, and now my response is there is no more money until NDIS comes in, which for us is 2019. Our new case worker with DSQ is now Annett. Annett came out to meet Brodie, and my hopes went up a bit again because even though she said there was no money available, she would go to bat for Brodie. Not to be, again.
In October, I found 121 Care, and after a couple of meetings, Penny offered us 4 hours per week using emergency funding for 8 weeks. This was later extended and has only recently ended.
In December of 2017, I found out that because of the extra hours Brodie was doing at Scils, he was now in the red with his package. Because of this, Brodie’s hours would now go from 2 days each week to 2 days one week and 1 day the other week. This was to help recover the deficit and is the current situation. The amount in the red has since become the responsibility of Scils.
Brodie and I have had several visits with Annett at DSQ this year to go over options, usually ending in tears. Always mine. The latest response is that there is no money available, we need to be creative with what we have. A request was apparently put in for funding for 2 extra days of support, and that was turned down. Other offers put to me from DSQ was for community groups such as The Mens Shed which Annett followed up, but they wouldn’t take Brodie on. Also, Riding for the Disabled and Sailability, both would need to be organised by me, but with my other nephew and my mother to look after, I just couldn’t commit to them. My other options from DSQ was a morning tea for me to join, a pamper group for me to get massages, create a ‘Circle of Support’, not to care for Brodie but to ‘look out’ for Brodie, and the best of all, consider a group home for Brodie, because they have funding for that!!!
In February, Annett was going to see if she could find an agency that might offer more time for Brodie. I gave her my list of everybody I contacted when we moved to Maroochydore. Nothing new came from that, Annett just recontacted Multicap as they were the most generous with time and a couple of visits were made with them. Brodie was not eager for this as he was dead against leaving Scils because in his words, ‘he loves his friends at Scils’. I tried convincing him because I was all out of options. I can see the decline in Brodie as he sits at home for 6 days waiting for his 1 or 2 days. When I told him the change to Multicap would happen within the next couple of weeks, his response was all negative, he got sad and depressed and stopped communicating. I had to drop the transfer and stay at Scils.
In April of 2017 I started the ball rolling on changing Brodie’s funding over to Direct Payments as that might save us just over $1,000 per year which could go to hours instead of admin. This started in July this year.
Also in April, Dave and Teonie came to a meeting with me and Brodie so we could take all emotion out of the meeting. Teonie did most of the talking with them and Dave spoke on behalf of Brodie. I can’t explain how much that lifted the feeling of pressure from me. Just to not have to go into that meeting alone for once was too much. During this meeting we requested a reassessment which they agreed to. We had the reassessment in May. The outcome of the reassessment is as I mentioned earlier, information for me to contact Riding for the Disabled and Sailability, more hours of support if funding becomes available and information to create a Circle of Support. Basically I heard what I have always heard from DSQ and that is wait and we will let you know if something comes available.
In May, Annett sourced some contract funding from Suncare to cover 1 day per week for 8 weeks. This was utilised through Scils throught May and June and has now been completed.
Over the years people have said to me to contact our local MP. I did do that this year. I explained our situation and they said they would look into it for us. After hearing back from DSQ their response was that another provider offering more days was sourced and we declined and Brodie’s funds were being moved to Direct Payments which should buy him more hours.
I contacted the MP’s office again explaining to them that I needed to weigh up whether more days for him at a different service versus his mental wellbeing was better for Brodie and they said contacting the Minister for DSQ was all they could do.
So as we stand right now …
Brodie has 1 day one week and 2 days the following week at Scils. In the past week they have offered 3 shared days one week and 4 shared days the following week but it seems since we now do Direct Payments the hourly price might have increased and we can’t afford that. I am waiting on an email explaining if this is so.
We have not heard from DSQ since the letter regarding the reassessment. No changes.
I have pretty much run out of fight and unfortunately Brodie will pay the price. I can’t always find the time to occupy and stimulate him as I also have others who take much of my time. Our car is not wheelchair modified so even something simple like a drive to shops becomes a big job as Brodie has to sit in the regular seat which is not comfortable for him and the chair is placed in the back. Therefore outings do not happen often.
Teonie has been wonderful in bringing other alternatives to us, people and organisations we had never heard of, and she has been amazing in the effort she has gone to for us. I must say that I have pretty much lost all hope and faith for Brodie as far as funding is concerned but I could never express how blessed we have been over the years to have incredible people like Dave and Teonie come into our lives.