One mum tells us why her autistic son belongs at home and how a Disabled Facilities Grant made it possible. K wanted to share their story to let others know what’s possible and to give them encouragement to pursue the best solution for their family.
As well as telling K’s story, this article will take a look at what work’s being done to support the effectiveness of Disabled Facilities Grants (DFGs) as well as signpost you in the right direction to access support.
So, what are Disabled Facility Grants (DFGs)?
DFGs are grants awarded by local authorities to help towards the cost of making adaptations to your home. They must make it easier for you to care for your disabled child or increase their level of independence while in your home.
DFGs are about ensuring the accessibility and safety of your home for your disabled child – and the rest of your family who live at home, as well as increasing the family’s enjoyment of independent living, privacy, confidence and dignity. Adaptations can range from minor alterations to major home extensions.
J is eleven years old and lives with his parents and his younger sister.
His mum told us that J is very cheeky, has his own unique sense of humour, is inquisitive and loves to be on the go. His greatest love is water play – outdoors or indoors in the bath or shower, which he also uses to self-regulate. He loves swinging, trampolining, rough and tumble, sensory play, riding bikes as well as travelling on different forms of transport whether it’s the car, school bus or trains. He also loves cuddles from mum and dad.
J has been diagnosed with ASD, Pica (an urge to eat and chew non-edible items), ADHD and Sensory Processing Disorder. He also has a learning disability, is non-verbal, has sleeping difficulties and struggles with high levels of anxiety. His anxiety is exacerbated by his communication difficulties, change, transition, waiting and sometimes this leads to challenging behaviours.
In Spring 2012 the family were living in a three bed semi-detached home. His mum explains that J had been a quiet baby but had missed development milestones and received his first diagnosis when he was around 2 years old.
As J grew his sleep patterns became disrupted and he became increasingly frustrated at not being able to communicate what he was feeling or what he needed. At the time his two older siblings were also at home which meant that space was limited and everyone was struggling with lack of sleep. It was becoming increasingly obvious that the situation was becoming unsafe for J and that he needed his own room.
The family’s DFG journey
Eventually the family were relocated to a four bed home and some adaptations were made – padding in J’s bedroom and security locks on windows and doors. Although J had his own room, the house in general was very small. As J grew the difficulties became more apparent – he struggled with anxiety, stress and self-regulating and his Pica was an on-going concern. J needed space and fresh air to help keep him calm.
Six years ago J was also having difficulties at school which led him to have an Education Health & Care Plan (EHCP) and a placement at another school which fortunately is working out well for J. At this time a Learning Disabilities nurse recommended a local, unfunded organisation whose volunteers advocate for disabled people.
K got in touch and one of the volunteers visited to meet J and assess his home environment. He concluded that neither the house or the garden was working for J.
The family were struggling to maintain J’s safety. They were afraid that they were coming close to a crisis point when they would have to consider alternative care for J (such as a residential placement) outside of the home if the situation was not improved or rectified. It was a very upsetting and worrying time for them. K explains: “We wanted him to stay within his family unit – the best place for J is at home”.
To keep J safe and to meet his needs at home it was agreed that he needed a bigger bedroom, his own bathroom for personal care, a play room where he could also receive treatment from a therapist and a safe outdoor play area.
The initial plan was to make alterations to their current house but there was simply not enough space and also J would not be able to cope with building work going on around him. They needed a bigger property and went on a waiting list.
When a potential property became available the Local Authority gave permission for the alterations under the DFG scheme but after receiving quotes, changed their minds as the cost was over their budget. The family consulted a solicitor as well as advocacy support and succeeded in overturning the decision.
Where the family are now
It took a while to find the right property but the family are now living in their newly adapted home. J has his own bedroom, playroom/therapy room and wet room. He has a large, secure play area and there’s off road parking which means J can be transferred safely to and from the house.
K explains this has made a huge difference to their quality of life. Most importantly, J is safe and he’s able to stay at home and benefit from the everyday love and care of his family.
We asked K if she could give any advice to other families in similar situations:
“We would recommend them to not hesitate to seek advice or support if necessary. Our advocates were invaluable and kept us going through multiple rounds of meetings and discussions, letter writing, emails etc. It was quite stressful at points to try and navigate. Me and my husband shared this responsibility equally and we really struggled. If a request is refused, keep asking why – don’t just accept the ‘no’. Avoid being confrontational but if it doesn’t feel right to you, keep asking. Keep knocking on doors – be like a dog with a bone”.
We would just also like to say that the Council did a fabulous job on our current home- we are really proud of what was achieved by everyone involved and they should be too! We hope to hear more stories of adaptations like ours in the future- fingers crossed, bigger and better hopefully if that’s what’s needed.
DFGs – Making a difference
The cost of adapting homes to allow autistic children to live at home are socially and economically worthwhile.
When families reach a point where they are unable to care for their children at home then the local authority has a duty to accommodate them at a cost of £7,000-£12,000 a week. K’s family were awarded a record breaking DFG grant of £165,000 which has already saved the council care home fees of over £1.1 million
In 2017, Cerebra and the School of Law at Leeds University, with assistance from the Access Committee for Leeds, carried out a pilot study of the economic and well-being impact of building adaptations to family homes to accommodate the needs of young people with Autistic Spectrum Disorders who have behaviours that challenge.
The study looked at the cost-effectiveness of home adaptations – averaging £60,000 each – for six disabled children and calculated that possibly 14 years of local authority funds had been saved due to the adaptations. In addition, there were numerous well-being benefits for the child and their parents.
The study was incorporated into a 2018 parliamentary briefing into disabled facilities grants for home adaptations. Based on this, Foundations, the National Body for Home Improvement Agencies in England, has just published guidance for adaptations for children and young people with behaviours that challenge. The guide includes case studies and examples of good practice in order to support the effective use of the DFG and discretionary housing assistance polices.
Luke Clements, Cerebra Professor of Law and Social Justice at the School of Law, Leeds University said:
“This is an inspiring story that owes much to the determination of the family and the wonderful support that they have received. It has been a privilege for us to be involved in this research and to be able to demonstrate the enormous cost benefits to councils of funding adaptations – and of course the enormous well-being benefits for disabled children and their families”.
Where you can get help
- Download our free Factsheet on Disabled Facilities Grants for Disabled Children in England and Wales. It will give you a short overview of Disabled Facilities Grants (DFGs) for disabled children, provide information about what they are and help you to navigate and access the information, support and resources that are available in order to apply for them.
- Our Accessing Public Services Toolkit, also free to download, gives advice on resolving issues in accessing services without resorting to legal action.
- Contact our Legal Entitlements and Problem-Solving (LEaP) Project which can help you get the right legal support for your child if you are having difficulty accessing the right services.
Names have been omitted for privacy purposes.