It’s two years since Braeden started individual support (a support worker employed specifically for Braeden) and I thought it may be of interest to our Have Wheelchair Will Travel community to hear our thoughts on the pros and cons of a day program for people with a disability versus individual support. It was never an easy decision for us to make the change because Braeden was so happy at his day program, but Covid forced our hand and although the new situation isn’t perfect, we haven’t looked back.
For those of you who are new to our website, I’ll do a quick recap. When Braeden left school, he began attending a day program five days a week. Braeden’s best mate, who he’d shared therapy, primary school and high school days with, was also there with him which made it a particularly sweet deal. As with any situation there were positives and negatives to the day program. Braeden loved the lively, sometimes chaotic, atmosphere and had favourite staff members who he would look forward to seeing every day. Unfortunately, the day program had the same issue that many workplaces face, keeping good staff. I feel the disability sector needs a total overhaul and trained support staff need to be paid a higher salary to keep them in the industry. If this was the case the disability sector may attract better quality staff, those looking at it as a career rather than a filler role. Anyway, I’ll step off my soapbox on this issue and get to the point. Hubby would drop Braeden at the day program on his way to work so he arrived at about 815am, but outings often didn’t happen until 10.30 or later. That left Braeden wheeling around for a good few hours before there was anything particularly meaningful happening. Usually Braeden and the other clients would return to the centre around 2pm, at the latest, which meant there was another hour and half of wheeling with nothing meaningful to do. Now, I will emphasise Braeden didn’t mind this, but we felt there needed to be more purpose to his day. Due to the busy nature of the centre, and the varying needs of clients, it was difficult for the day program to implement any of Braeden’s goals, especially communication goals, with consistency. He was also horribly distracted by the lively goings on which meant it appeared he couldn’t use the communication system, and this gave staff reason not to try. While we were often discontent it was hard to make a move for many reasons. That’s until Covid forced our hand. When we pulled Braeden from the program in March 2020, we honestly thought he would be back, even if it was part time but as things dragged on our mindset shifted. Predominantly the shift was to control Braeden’s environment and hope to keep him safer as no vaccinations were available at that stage.
Braeden started individual support in July 2020 as Sydney started opening up again. Ashley, a support worker that used to work at his day program, with whom he had a wonderful rapport, agreed to work with Braeden and we couldn’t have been happier. With this support we were able to tailor his days away from others and we had full faith in her. We loved seeing him experience full days with activities from 10-3pm each day and these were geared to his interests. Ashley took good care of him, challenged him and made sure he had fun days. We started to incorporate his therapy goals and began trialling Braeden at the Cerebral Palsy Alliance Gym at Allambie. The progress was immediate and carried over into his day-to-day life with stronger walking, better transfers and greater stamina. We were buoyed seeing Braeden try new activities and at watching him succeed. Not only were we happy, but he was proud of his achievements. Ashley documented everything with photos and videos, and we had good daily communication around Braeden’s outings. Something that was often lacking previously. Ashley was fantastic at making suggestions, giving us feedback and was really part of team Braeden. We always said we would like to clone her.
When Braeden came home one day from a day out with Ashley and had news on his iPad it was both good and bad news for us. Ashley was pregnant which was fantastic, we always want the best for our lovely support staff but it also meant that in absence of human cloning, we needed to find someone to try to fill her shoes. This was a big challenge. In the end it took three people to fill Ashley’s shoes and we had the closest thing to a clone with Ashley’s sister joining the team two days a week. The other two support workers were also recommended through unusual means. Our electrician’s friend’s daughter (studying support work at TAFE) filled one day and a personal trainer our speech pathologist suggested filled the other days. While Ashley had worked in the disability sector for many years, none of the new team had experience. But we had a secret weapon, Ashley, who would train them all. She made sure they knew Braeden’s good, and challenging, traits. She did shadow shifts with the new team individually until they were ready to soar on their own.
Perhaps the biggest challenge we have found with individual support compared to the day program is the fact that if a support worker is sick or unable to work, it often leaves us with no care for Braeden. That has been difficult if I have a work commitment or an appointment for my parents. One day Amelia took the day off university to care for Braeden as I had an appointment for my mum I couldn’t miss, Hubby had work commitments and none of our support workers could cover the worker who couldn’t work. I hated Amelia missing uni for the day but Braeden of course loved heading to the movies with his sister and everything worked out okay.
We try to be as flexible as possible if we have good support workers but with publishing Travel Without Limits magazine I find it incredibly difficult to lose a day’s work, particularly when it is close to the issue going to print. I haven’t found a good solution to this problem as things happen and people get sick. It’s not easy to get care at short notice and I’m not prepared to have Braeden supported by someone who hasn’t had sufficient training.
Braeden’s days are now tailored to his interests, but the rainy weather has certainly meant he has been repeating many outings. It’s not easy coming up with ideas every day and I’m probably a bit hard on myself as I like to have new and different things peppered in amongst old favourites. I feel it keeps the support workers more interested and stimulated in their jobs as well as keeping Braeden happy. This also means we spend more money with entry fees to attractions and Braeden purchasing items when he is out, but again we find this all adds to Braeden’s enjoyment. Braeden’s days consist of visits to museums, galleries, festivals, zoos, reptile parks, aquariums, parks, walking/wheeling tracks, bike riding, beach wheelchair strolls on the beach, ferry rides, ice skating, roller skating, going to shows, seeing movies, bowling and any time a pop up event happens he’s there. If we see anything which we think he will enjoy he is there.
Braeden can now use communication systems with his support staff to choose his activities because his support workers have the time to work with him on his skills and the flexibility in their days. With individual support he can order food in a café, bring home news by way of picture communication and his staff don’t change so they really get to know him well.
Braeden’s individual support is dependent on his NDIS funding and it is not easy, despite the evidence, to convince the agency that he needs the individual support. Braeden’s progress alone should be sufficient to prove that he is meeting goals and has far more independence with this support. It’s a fight worth fighting but like the day-to-day admin of individual support it is more work for me.
It’s rare to find a support option that ticks every single box and there are pros and cons to both a day program and individual support but on a whole we think Braeden is gaining valuable skills and is much happier with his individual support workers. What I’m working on finding is a weekly activity Braeden can go to with his support workers so he could have more social interaction with his peer group. That’s the one missing piece I’m yet to solve.
I’m really keen to hear other people’s experiences and what you’ve found works best for your situation. Let us know in comments below or over on Facebook.