A Newington couple whose severely disabled children are living in cots in the family’s sitting room say they are desperate for their home to be adapted if an alternative property can’t be found.
Bilal Tozsu and wife Tilin care for 13-year-old Hatice and 11-year-old Muhammet who both have multiple health problems related to a rare form of epilepsy, leaving them blind and unable to walk or talk. Both children are ‘peg’ fed through a tube into their stomachs.
The lack of adaptions at the couple’s home in Melbourne Avenue, and the failure to find a suitable home that could be adapted, means they are struggling to care for their children as they become older and heavier.
Mr Tozsu, 38, says finding an alternative, suitable home has proved impossible despite years of bidding and so the solution would be permission for an extension into the garden, containing a bedroom area and wetroom. The current living room could then serve as a second bedroom with the parents moving the sitting room upstairs.
This would also provide the space for proper equipment that would mean a care package for the youngsters could be carried out safely and they could have separate bedrooms. Currently the parents and carers are having to use children’s paddling pools to bathe the youngsters in the front room. Being in one room also means Hatice suffers fits triggered when she is startled by noise from her brother.
But, Mr Tozsu says the council have not entered discussions with him about the idea even though alternative adaptions internally, including a lift, were vetoed as too expensive.
He said: “This is a very good house, but not for my children. For the last two years I have asked the council to come and have a look. I’ve asked for an extension as there is a lot of space in the garden, then we could have a bedroom and wetroom, but they have not come to look.”
The couple have been in the UK for almost 20 years after arriving as refugees from Turkey in 1998 and have British citizenship. They moved into their current home in 2014 because their previous property, also in Newington, was privately rented and so adapting it was not a possibility.
Mr Tozsu said: “Thanet council said we could have this house and make a lift and adaptions. We moved in but were told the adaptions could not be done that year as we were outside of the budget time. In April 2015 someone came out from Mears, Thanet council and the Occupational Therapy Team. They said for the lift and widening the doors the money spent would be more than the maximum allowed (through the Disabled Facility Grants scheme) and so we were being put back on the bidding list.”
Thanet council offered a property in St Peter’s but the family say it was not suitable as the rooms were too small for proper adaptions to be made.
Mr Tozsu said: “It would have been better to have a bungalow with everything on the ground floor. It is hard to care for two disabled children, 24 hours a day. We have no life and do not know what to do next.
“If my kids were small it would be better but they are now 13 and 11, there should be something happening by now. I feel like they are just waiting for my children to die.”
County Councillor Karen Constantine (pictured) has taken up the family’s plight, contacting Thanet council, Kent County Council and Dr Tony Martin, head of Thanet’s Clinical Commissioning Group.
She said without adaptions either to the current home or a move to a suitable home the childrens’ quality of life is severely damaged and the parents will continue to struggle.
She added: “I’m trying to find out if the family are getting all the support they should have and whether there is a better care package option. It is also important the family get decent adaptions so they can benefit from a carer’s package because, without the adaptions, that package is largely redundant as the carers now can’t manually handle the children as they get bigger.
“Someone has to help them.”
A Thanet council spokesman said: “The council fully understands and is sympathetic to the challenges that face the Tozsu family. We completely appreciate that their current home makes general living difficult for them in meeting the complex needs of their children.
“They are currently in a 3-bed home and have been at the very top of our housing waiting list for a 4-bed home been since September 2014.
“In November 2016 the Tozsus were offered a 4-bedroom house which was deemed to be suitable by both Thanet District Council and Kent County Council Social Services for the family’s needs. The house had been adapted specifically to meet their family’s needs in consultation with the Occupational Therapist and Social Services.
“The family declined that offer.”
Mr Tozsu and Cllr Constantine say the house was not suitably adapted.
Thanet council says there is increasing demand for social housing and, in a bid to deal with this, the authority is undertaking a £28million new build programme which will include properties built to lifetime home standard. This means that homes can be adapted and meet the ongoing needs of tenants so are suitable for life.
The spokesman said: “Homes like this will be advertised through the KentHomeChoice and as Mr and Mrs Tozsu are in the top band, and have been for some time, this would put them in favourable position when placing a bid.”
They added: “The Tozsu’s case is unique and our housing team has been working hard for a solution. If we had a suitable home to offer them immediately then we would. The council can assure the Tozsus that when a suitable four-bedroom home becomes available then they will be the first to be offered that property.”
The spokesman said they would make enquiries about the request to build an extension on the current property.
Disabled Facility Grants
Disabled Facilities Grants (DFG) help pay for home adaptions to cope better with a disability. The Housing Regeneration Team administers the disabled facilities grants, which is a mandatory requirement on any local authority.
Grants are given to owners or tenants to help provide essential adaptations to enable an occupant to use or access their home. The maximum grant given is £30,000. Examples of adaptations include:
- Providing ramps to allow a person to get in and out of their house
- Stair lifts and through floor lifts
- Level access showers for people who can not use a conventional shower or bath
- Moving light switches, power sockets or heating controls to correct height for occupants
Grants will be given based on a means test and some applicants are required to pay some or all of the costs of the works from their own resources. Every applicant will always be told what their contribution will be before they make the decision on whether to have a grant.
Thanet council on social housing provision
Demand on social housing is increasing locally and is a national problem. In Thanet there are just over 3,000 homes in the social housing sector and more than 2,000 people eligible to be housed. In Thanet there was a 30% rise in 2016 on top of a 30% rise in 2015 on 2014 figures.
Thanet council is actively pursuing a progressive housing policy to build new homes and bring empty properties back to life. the authority is currently half way through a £28 million new build programme to provide 140 housing units – included in this are properties built to lifetime home standard. This means that homes can be adapted and meet the ongoing needs of tenants so are suitable for life. Homes like this will be advertised through the KentHomeChoice
Thanet District Council is also investing resources to bring back 500 empty properties to be fit for people in housing need. The authority also works with other agencies to provide relief housing for the homeless during winter months and has been successful in turning people’s lives around through the Winter Shelter scheme in 2016 and will continue to run the scheme this year.