A mother from New Malden launched the #GetVinnieGrounded campaign across social media on Monday, to put pressure on Kingston Council to provide her family with ground floor, disability friendly, accommodation.
Kelly Jones claimed that Kingston Council have left her family in overcrowded housing since 2017, despite her ongoing pleas.
“I fought to keep my son alive in hospital, I fought to get him on life saving treatment, and I’ve fought for everything along the way, and now I fight for this,” Jones said.
Vinnie, her son, is five years old and was diagnosed with type 1 spinal muscular atrophy (SMA) at nine weeks.
He has use of his hands and is able to use a power wheelchair to move around independently, but Jones’ two-bedroom flat is not adapted correctly to allow space for Vinnie to get around and he needs a ground floor bedroom.
Jones claims that Kingston Council has informed her over the last three and a half years that no housing has become available that would suit her family’s needs.
She said: “They say that they have nothing available, but there are houses sitting empty, it’s crazy,” she said.
Jones posted photos on Facebook on Thursday of the houses in the area that she believes are unoccupied and have disabled access.
The family also applied for a £10,000 specialist stair lift in 2017, but Kingston Council said it could not fund it because her flat was not suitable for adaptation and there was already an issue with overcrowding.
In a statement, Kingston Council said: “We are working to help identify a suitable home for Ms Harrison [Jones’ former surname] that meets her family’s needs as soon as possible.
“Ms Harrison is amongst those applicants with the highest priority on our Housing Register.”
Dangerous living situation
The flat is situated on the first floor, and Jones has to carry Vinnie and all his equipment up and down the stairs multiple times a day.
Jones said: “I’ve got a standard size hallway and when you’ve got a child that is a metre long and you’re carrying him like a baby there is always a risk of you banging their leg or their head on a door frame.
“I’ve fallen on the stairs twice now.”
Vinnie and his sister have their own bedrooms, but Jones has been sleeping on the sofa for three and a half years.
“Carrying him up and down the stairs, doing all the lifting, carrying all the equipment, and then having to sleep on the sofa at night means my back is killing me,” said Jones.
Social media response
On each day of the #GetVinnieGrounded campaign, Jones releases new information about her story and her response to Kingston Council.
As part of the campaign Jones shared a video that shows her daily struggle of lifting Vinnie and his equipment up and down the stairs which has been seen by over 84,500 people.
One person commented: “Disgusting you have to even fight for this.”
Another said: “Kingston Council you should be ashamed at the way Vinnie and his family are living in this day and age!”
Challenges of the pandemic
During the pandemic, in May, Jones’ partner and dad to Vinnie decided to separate from the family and move to Wales.
Jones has also lost her mobile hairdressing business because the family is shielding.
Jones said: “There’s no way I could risk going into every Tom, Dick and Harry’s house not knowing where they’ve been and then come home to Vinnie.”
The family also chose to stop receiving overnight support from NHS carers between March and the end of August because they were shielding, and only had contact with one other shielding family with a child who also has SMA.
Jones’ situation is not uncommon.
Fiona Morgan, operations manager at Skylarks charity for families with special needs, said: “Over-crowded housing for families with disabled children is a situation that we see commonly.
“I’ve written letters to councils on behalf of parents to support their complaint.”
In a statement, Kingston Council said: “Unfortunately, the wait she [Jones] has experienced for a new home reflects the scarcity of available social housing.
“This is part of a national crisis in council housing and Kingston is no different.
“We have begun a programme to build more homes but it takes time.”