Why the Disabled Facilities Grant is not enough

My adult son has Spinal Muscular Atrophy Type 3. He had a fall at home in January 2017 where he fractured his tibia and fibula. This resulted in the loss of his mobility and independence. As a result, my son came back home to live with me. I had already been in contact with Adult Social Services for some time to help with alterations to my home to accommodate my son. Following his accident, they finally offered assistance and recommended we apply for a Disabled Facilities Grant (DFG).

A lack of accessible homes restricts independence

Of course, the ideal situation would be for my son to have his own home. He’s an adult. He needs privacy, dignity and independence. He needs to have a bungalow, but there are only flats or houses available. He can no longer manage stairs, and a ground floor flat would not be suitable as he is hypersensitive to noise.  He also doesn’t have the strength to handle fire doors within a flat.

To have his needs met, and a better quality of life, he needs a bungalow with level access and a garden. He has been on the council housing waiting list for many years now. In the meantime, we had to make urgent changes to my own home. My house is on a hill, and it’s not suitable for a wheelchair user like my son. But adaptations were the only choice we had at the time.

What adaptations were needed to improve independence

As part of the DFG process, a hospital Occupational Therapist and physio assessed the house and arranged for some of the necessary equipment to be installed. This included a ramp, a commode and a hospital-type bed in the dining room. My son has lived there ever since. We were told Adult Services do not pay for more than one ramp. That means we only have a ramp at the front entrance. There is no means for my son to access the garden from his room directly. More worryingly, there would be no means of a quick exit if there was a fire.

For a bathroom, he has to use the downstairs cloakroom with a commode over the toilet. However, the cloakroom is far too small for my son to wash in safely. He has been washing at the kitchen sink every day since he came home from the hospital following his broken leg. For a brief time, before coronavirus hit, he was able to shower at the local leisure centre with the help of a carer, which, in itself, was gruelling. Getting there and back and changing took all his energy for the day, so he was only able to manage a shower once a week. Due to coronavirus, leisure facilities have also been closed. This process has become increasingly difficult for him as his condition progresses. Now, he is relying more and more on his power chair. Since lockdown, he hasn’t been able to shower for almost three months - this is taking its toll both mentally and physically.

The cost of making a home accessible

As part of the DFG, the council proposed more permanent adaptations to my home. Adjustments included a basic wet room and access around the side of the house into the dining room. This access would need to be covered, but that was not included in the proposal. There was also no provision for storage of my son’s wheelchairs and other equipment. As a result, all of the equipment needed to be stored in the dining room where he sleeps. The proposals were not fit for purpose.

Another huge factor was the cost to make our home accessible: this would be a great deal more than the £30,000 grant we could get from the DFG, which includes fees. Neither my son nor I have the funds to be able to cover the extra costs.

Coronavirus has left us on the waiting list

While this has been going on, my son has been on the housing waiting list hoping that a suitable bungalow will become available. Last summer, the Occupational Therapist from Adult Social Services persuaded us to put the DFG on hold.

We were told it would be a simple process to reinstate it. Unfortunately, this has not been the case. We contacted Adult Social Services and the council sometime before lockdown to have the DFG reinstated but have now been placed back on the waiting list. The current coronavirus situation means the waiting time is now even longer.

It’s been a long and frustrating experience. Living with a mother and adult sister, my son has no social life and minimal independence. The lack of access to necessary facilities, like a shower, is also impacting on his mental health. Due to the complexity of the situation and the financial implications, we are stuck in limbo. The wet room extension and access to a patio outside would make a difference. But how can we afford it?

The DFG doesn't go far enough

The amount available from the grant has remained static since 2008. But the costs of building materials and labour have risen. Major adaptions are costly, and there needs to be more support available for those with complex needs who cannot afford the extra costs. The upper limit of DFG funding needs to be higher than £30,000. The government-commissioned Independent Review of the Disabled Facilities Grant (2018) recommended it should rise in line with inflation.

A grant officer even told me that many people re-mortgage to meet the funding gap. But that’s not possible for everyone. And should we be expected to do this? Three years on from our initial application, we are still waiting. And with the current pandemic, who knows how much longer we will be waiting?