Our CEO, Jon Hastie, blogs about the challenges of moving home as an adult with Duchenne:
Views and opinions entirely his own.
BY JON HASTIE
No matter how hard we try to overcome, avoid or ignore them, there are always barriers to getting the life you want as an adult with Duchenne. Of course, that is true for the majority of non-disabled people as well, but as an adult with complex needs, these barriers are often greater in scale and number.
As I have said in previous blogs, I consider myself to have a great life and for the most part, I’m very happy. It’s not the life that most people want, but I have adapted my life so that I can be genuinely happy as I am. Of course, life isn’t static so that isn’t the end of the story. As we continue to develop we set new goals, and often our life circumstances change, so we need to make adjustments to continue to have the life that we want. It’s when we need to make changes we are reminded that getting the life you want doesn’t always come easy.
My life over the last two years has changed dramatically and continues to do so, as I have met someone and decided to settle down. With that has come a whole new set of priorities and goals for my life. No longer is my life just about my own happiness. Now, it’s about the health, happiness and well-being of both of us as a couple.
Tomas, my partner, recently completed his Masters, and moved to the UK to begin his career. As with many specialist jobs, he has been required to move to a new location to do this. So far so normal, we certainly aren’t the first couple to need to move for work, or to need to figure out a compromise that works for both parties. Yet the barriers are often circumstances such as dependant family, children, or the other partner’s work that get in the way. For us, agreeing in principle to move hasn’t been hard, and we share the goal to move once his job has some degree of permanence.
For most couples of our age, once the decision has been made to relocate, moving is not exactly a simple affair, but a tried & tested formula. If you are renting, it’s a case of finding a property, putting down a deposit and moving in. Tomas was able to complete this process for himself in two weeks. If you are a homeowner, the process is more convoluted but is still comparatively straightforward.
As an adult living with Duchenne, the obstacles to moving are far bigger:
- If renting, you need to find a landlord will allow you to make structural adaptations to any property. While some housing associations may allow this, most private landlords will not.
- If buying, you need a mortgage or shared ownership scheme. I’m not at all familiar with how this works as a disabled person and what problems the life-limiting nature of Duchenne might throw up.
- My care package is not portable, in that I will need to re-apply for Continuing Healthcare funding in the new area to get funding for my care. If eligible, I will then need to get a care plan approved. From assessment to care package took 12 months when I did it here.
- Once funding is secured, I’ll need to recruit and train an entirely new team of Personal Assistants, building up a stable team with a contingency plan when PAs can’t make it in.
- I will need to organise specialist equipment in the new area including bed, mattress and hoist. This will probably require an OT referral which may take a few weeks to arrange, but will need to be in place before I can move.
- I may need to apply for a disabled facilities grant to make structural adaptations to the home, specifically installing a wet room. This usually takes about 18 months from start to finish. My hope is that we can find a property without the need for adaptations but this is highly unlikely.
Previously the scale of this challenge has always deterred me from moving. For the last 10 years I have always wanted to move to Brighton but decided not to, so I didn’t have to change my local authority and then CCG area (and go through the whole process). However, this decision is no longer just about me, and I have also learnt a lot more about how to overcome these kind of challenges, so feel a little more confident. There is often a way. On the bright side, making these changes will give me a valuable insight which I can use to help others with Duchenne make the same transition.
Sadly, many of the barriers identified above really need not be there. They are bureaucratic and time-consuming for everyone involved, and often unnecessary. I very easily passed my continuing healthcare assessment here, and as it is based on a national framework it is reasonable to expect I will be eligible in another area. Yet I still need to go through the process of assessment again, taking up precious time and resources which could be better used elsewhere.
It is certainly possible to achieve many great things living as an adult with Duchenne. Yet all too often we must overcome immense hurdles to do so, both personal and health-related challenges as well as unnecessary social barriers. While it certainly makes the final achievement feel even greater, all too often the challenge is so great it puts people off even trying (as it has done to me in the past).
Right now I’m in research mode, exploring all the possible options and trying to answer many of the questions I have, while at the same time throwing up a hundred more! Given the scale of the task, I’m not ready to make the leap until we’re really sure it’s the right place for both of us. I wouldn’t have the energy to repeat this process multiple times so we have to get it right the first time! So for now, Tomas has moved to Reading while we figure that out. It’s hard being apart again, but we have no other solution in the short-term.
My life has big changes ahead, and while daunting, I’m excited about the prospect of marrying Tomas and settling down. The end result is most definitely worth it.