Case study transcript - Suselle Boffey

Suselle Boffey

Although I think on principal discussing medical bits and pieces it diverts attention away from the whole principals of independent living I can tell you that I have full assistance needs. I have, from infancy, had a muscle-wasting condition and that has meant gradually over the years that I’ve required assistance with all aspects of daily living. And I suppose one of the more relevant things to say is that I now use ventilators as a trachiastomy. I use ventilators and as a result of that I need 24/7 cover, which means that I am very fortunate to have PA’s 24/7.

To me Self Directed Support is a tool towards the goal of independent living. Independent living is a huge concept, most non-disabled people take for granted that they can go and look for a job and do anything in their social or business lives that they choose to, or education. For me, and many others we need support to do that and Self Directed Support gives me the choice control and flexibility in my life that non-disabled people have.

Relationships with PA’s are as complex and rewarding as relationships with anyone else. There has to be a recognition on both sides that there are boundaries, they’re not primarily your friends although often when PA’s have worked for you for a long time they do become a friend and there is a friendship part of the relationship but there are boundaries, you are the employer and they are the employee and it is always good to keep that in mind.

One of my key ways of working in life generally but particularly with my PA’s is to promote communication as the way that makes it work.

Communication oils the wheels of relationships and I think that’s what really is the message that I would want to put over.

PA speaking

I’ve been working with Suselle, coming up for 16 years now and I work as a PA for Suselle. Suselle has 24/7 cover, which I know isn’t the case for everyone and she uses it to employ staff so that she can live her life independently, do what she wants, when she wants and have the support there. We assist her in her work, in travel, in home, in every aspect of her life basically.

Suselle speaking

I think my advice to anyone who has any level of assistance needs is to pursue their chosen life, to pursue independent living and Self Directed Support is the main tool of making that happen.