Who will care for my disabled son when I’m gone?

A woman sits with her son at the kitchen table. They're smiling. She rubs his head.

The decision to explore the provision of long term care for your loved one is not an easy one.

We had always said we’d look after our son Alex for as long as we could, and as long as there were support systems in place. But with dwindling resources in respite care, it’s becoming harder to plan for the future.

Dwindling resources in respite care

A smiling woman watches her son drinking juice at the kitchen table

Alex is 24 now. He was born with cerebral atrophy, a cleft palate and hypospadias. He has poor eyesight and hearing, as well as learning disabilities. Two years ago, he was diagnosed with a rare genetic disorder. On top of this, he is autistic, has OCD, cannot speak and has trouble walking

After 24 years, the time has now come. A number of issues moved my husband, Gavin and I toward this decision; the fact that we are carers and no longer parents, that our own parents are elderly or deceased, and now our younger sons are moving on to university and to their own lives.

A man and woman sit at the kitchen table. They look fed up and upset

Added to that are the dwindling resources in respite care. We also wanted to secure appropriate care while we are still able to advocate for the best.

We are so lucky to have Sense as our main day care, because Rotherham council have just voted to close down its learning disability day care centre.

Transitioning to new services is a minefield

A woman sits at her kitchen table. She looks concerned.

The twilight world of transitions is a minefield of funding. Resources are reducing and local councils want to provide care as cheaply as possible.

Gavin and I are now 18 months into the process and still have not secured an outcome. The debate over whether Alex still needs 1:1 funding is ongoing, and it’s a debate that’s been happening since his childhood.

Whether the council can secure funding to build an assisted living house goes to panel in July. In a way, we have been fortunate for this opportunity to have a house built, but it’s been slow and arduous, and could yet hit a brick wall.

If it all goes to plan, Alex could move out of our care in the autumn of 2019, after nearly 3 years since the start of the process. By July we will know if we are back to square one.


Sense’s When I’m Gone campaign highlights how disabled people and their families are struggling to plan for the future.

Ask your council to help disabled people and their families plan. Join over 10,000 people and sign the petition.

2 thoughts on “Who will care for my disabled son when I’m gone?”

    1. Hi Lize

      Sense is writing to each council about our When I’m Gone campaign, and that includes sending a toolkit to Local Authorities in England to help families plan.

      You can help us influence local authorities by signing our online petition > https://goo.gl/8yuRkR

      If you want a bit more detail on what your local council is doing you can write to your local councillor to ask what they’re doing to support disabled people and their families to plan for the future.

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