Kylee Black is an advocate and works as a Self-Direction Advisor for Mycare. She also uses the platform to book and pay for her crew. After a year, we caught up with her to find out how things are going.
By Natalie Brunzel
A dynamic, young woman greets me as we both make our way to the café counter to order our food. Always the connector, Kylee is chatting away to the staff while scanning the room for the best place for us to sit. Her eyes light up as she talks to me about her work. Over the past year she says one of her highlights was speaking at Parliament, where she underscored the universal benefits of creating an accessible world. Kylee asked the audience: “What world would you want to live in? Because the policies you are making today are ones you may be living under tomorrow.”
Kylee is a public speaker and uses her connections to ensure that other disabled people have the same opportunities that have been created by the flexibility self-managing supports provides. One of the most important aspects for Kylee is to be able to have her own say in her life and the way in which her supports are managed. She is vocal about ensuring other people with disabilities have the right to choose and finds it difficult to see how long it’s taking for Enabling Good Lives to be rolled out nationwide. “While things are moving in the right direction, there’s still a long way to go. Not only is the roll out going to take about five years but there’s also still a lot of work to be done in terms of accessible workplaces, communities, transport and attitudes.”
Everyone is working hard on the transformation of disability supports. However, it is a process that is taking its time. There is a lot of information that has been difficult to obtain such as knowing when different areas will receive funding and what that model will look like in that area. Kylee believes strongly in people with disabilities having equal opportunities regardless of where they live. “At the moment it depends on your postcode as to which supports you receive and that’s just not fair.” She chose to join Mycare to pay and manage her supports just over a year ago. “It works well for both myself and my crew.” After all, she is the one who knows best what she needs.
Creating relationships rather than clinical task-based supports was one of the most important aspects for Kylee. That’s why she calls her support workers her crew because to her they are more than a workforce but an integral part of her life. “It’s about doing life together and allowing others to journey this road with me as well, and in doing so whatever that journey looks like day to day or week to week.” Kylee has found that in a changing landscape of personal circumstances, impacts the way in which she structures her supports and is continually evolving. A year ago, her crew consist mainly of students who worked fewer hours. “It was great to have students as I could offer them an opportunity, to give them an understanding of what it is like to live with a connective tissue and rare disease.” This meant she had a large crew. Mycare worked well as it made booking and paying her crew easy.
Kylee chose Mycare because of its philosophy of community supporting community. This meant a lot to Kylee as she says, “I believe in people doing life with one another and disability not being something to fear but making it a natural normal role without our wider community. At the end of the day we all need supports in a variety of ways, disability is no different.” That is why it was important for her to find a way to have supports where the relationship was mutually beneficial. This was a key feature Mycare offered. However, the dynamic platform has also allowed her the agility to scale the supports to her needs. Her crew has become smaller with fewer people working more hours. Mycare gives the power to the individual who requires supports by being able to book and pay all online. It also connects workers with people seeking supports.
Unlike some traditional home care support systems which require heavy administrative costs, time and effort through a third party, platforms like Mycare remove the need for these issues, through directly connecting workers with support seekers. Everyone’s worker has been vetted and both parties can agree or decline to work. However, it also enables individuals to bring some of their community connections onto the platform which enables them to receive the benefits.
It’s a two-way street, as Kylee explained, “For example, one of my crew was going to be away all summer so I filled all of her shifts. She ended up returning a month early and while I couldn’t provide her any hours, there was a person I knew on Mycare who was looking for someone, so my crew member was able to access work easily.”
The key to having a successful crew is ensuring that there’s give and take in the relationship. “Disability is like other areas of life, in that none of us stand alone”, Kylee reflects, “we all have need support, and have our crews, a community who stands with us, Disability is no different.”
If you have any concerns please contact Mycare’s Customer Success Team on 0800 677 700, or email firstname.lastname@example.org.
About the author: Natalie Brunzel works as a freelance Communication Consultant. She has worked within the disability sector for over 10 years. Her extensive knowledge of the disability sector and lived experience of an impairment provides a refreshing look at topical issues.