Disabled Facilities Grants – One Family’s Story

27 April 2021

One mum tells us why her autistic son belongs at home and how a Disabled Facilities Grant made it possible.

Disabled Facilities Grants – One Family’s Story

27 April 2021

One mum tells us why her autistic son belongs at home and how a Disabled Facilities Grant made it possible.

Disabled Facilities Grants

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.

Meet J

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.

The problem

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

Names have been omitted for privacy purposes.


15 thoughts on “Disabled Facilities Grants – One Family’s Story”

  1. Ross Sidebotham

    Whilst reading this, I found so many similarities to what’s happening currently with my family. My son has just turned 7 is non-verbal and everything goes in his mouth, or he will bite what ever he can get to, it doesn’t matter what it is. I have had to cover every single corner in the house with a plastic covering be cause he bites it. We currently live in a 3 bed, and trying to get permission from the housing authority to make any changes is like trying to walk on water. Its constant blockages. So we use his bedroom for everything for him. After reading the above though gives a little hope though.

  2. Annemarie hanbury

    Hi I have a 13 year old boy who has autism and adhd severer sleep disorder eating disorder dyspraxia we are trying to do the spare room has a study for him has he struggles being in same room has us and can get really frustrated he loves art and computer and making things would love help or advice please

  3. We are 5 years into trying to adapt our home for our son Thomas which will cost £120-150K. We have had to fund-raise in the pandemic to make up the shortfall with the wonderful charity, Sullivan’s Heroes.

    Our adaptations are in limbo as Brexit, the Pandemic and Suez have seen costs spiral well beyond our budget.

    1. Hi sorry to jump on here – hope you don’t mind. My son, also Thomas has Duchenne and I’m hoping to fundraise with Sullivan’s Heroes too as my LA Stockton have basically wiped their hands of me because I disagreed with their plan proposals initially 7 years ago to separate Thomas in an extension downstairs off the back of the house taking, to lose half the garden too, which for a child who could still play in was important. 2018 I requested a garage conversion to wetroom which had its delays and then lockdown. Tom has issues other than Duchenne. Sensory/separation/possible traits. Tom’s realising this is needed sometime soon and more accepting but this requires bedroom also so narrow 8ft extension across back of house is ideal but LA won’t allow. The work requires 55k + above the DFG and 4K + architect. I’d appreciate Cerebra advice too please?

  4. Hi, my son is three diagnosed with autism, he suffers with DPS which causes him on a daily basis to bang his head and chin against windows and walls. 24/7. I’ve asked council to help me and he is danger everyday and they have pushed me to one side. I don’t know where I stand. I’ve had many health professionals write supporting letters but just seems they don’t care. I am at breaking point and in need of some help.
    Thank you.

    1. Hello. Thank you for commenting – really sorry to hear about the challenges you are having. Take a look at the legal rights section on our website which has lots of advice on how to access the support services your son is entitled to, including template letters you can use to write to your local authority. You can also contact our Legal Entitlements and Problem Solving Project for individual guidance. You can access all the information here: https://cerebra.org.uk/get-advice-support/legal-entitlements-problem-solving-project/. We hope you get the support you need.

  5. Hi
    Do you have any information on anything similar for Scotland my autistic son needs his own room
    And we have a 2 bedroom he loves this house and garden it is safe and quiet for him
    My youngest son who is four is still in our room ! It would be completely detrimental to my oldest autistic son to have to move ! We are in a council house there is a loft that I’m
    Sure could be converted into a room I have no idea about how I’d go about asking to get this done !? Thanks Celine

  6. sheryl malcolm

    Can the OT assessment be done by a therapist that doesn’t work for social services? Even a therapist in the local health authority?
    We have a very long waiting list in this area and currently no therapist, the post is vacant. The social worker and previous therapist were skeptical of any grants being made for autistic children without a physical disability. In their experience they believe that these applications are always denied….

  7. Hello I am in a very similar situation both my daughters are autistic but my younger daughter is quite severe she has global development delays is non verbal double incontinent has pica and has trouble with walking eating and sleeping she cant really manage stairs very well and as she gets older its becoming increasingly difficult to manage we moved in 2020 to a bigger home because she needed her own room but we were told by the council they would help with adaptations to the property they have not honoured their promises to this day we are still on a waiting list just for assessment our bathroom is tiny and I have to get in the bath with my daughter to clean her which since she has gotten bigger she is becoming increasingly more angry and frustrated and I have been left with many injuries I know it’s not her fault she doesnt know her own strength our garden is highly unsuitable for her to play in and we dont go many places due to her anxiety when in sensory overload what would really help us would be to have a washroom downstairs as our downstairs toilet is on the exit of the property so we dont use it and it would be great for her to have her bedroom downstairs so she doesn have to manage the stairs because it takes her such a long time to climb stairs she needs constant supervision I dont believe I’m asking for the moon my babys world is very small as is and I dont want to have to seek outside care for her everyday life is a uphill struggle and we are becoming increasingly desperate as she gets older I need someone to help me my mental health is in tatters right now and the council just keep closing the door in my face

  8. Hello, Could I have some advice please? I currently live in a 2 bedroom, 3rd floor flat.i have a daughter aged 6 who shares a bedroom with my 3 year old autistic daughter and I also have a newborn baby. The property does not have a lift and therefore It is becoming increasingly difficult for me to leave my property due to my 3 year oldest refusal to walk and sensory overload which means I have to carry her down 3 flights of stairs everything aswell as a newborn baby. I am also unable to leave my daughters disability buggy downstairs in the communal area due to fire safety and therefore I am having to carry this up and down the stairs everything I leave my flat. There are floor to ceiling glass panels throughout my home which my daughter has previously broken during a meltdown. The other side of these glass panels is a 3 story drop onto concrete floor which I’m sure anyone can imagine the consequences if my daughter was to break one. Luckily the one she had broken was part of the balcony door and therefore there was no immediate drop the other side. My autistic daughter has significant sleep problems and can become very distressed and violent throughout the night which keeps her older sister awake and also outs her at risk as she will attack her older sister during meltdowns. The rooms are box rooms and therefore my daughters currently have a bunk bed due to the limited space. This causes further risks as my autistic daughter climbs and attempts to jump from the top bunk throughout day and night. She also is able to reach the light and has attempted to swing from the light shade. There are many other serious risks but I won’t name them all. I have spoken to the council who have stated that there is little they can do and I will just need to bid on properties which could take up to 10 years they stated. The member of staff I spoke with was very rude are sarcastic regarding my daughters difficulties stating things such as ‘a lot of children have autism and its something you just need to manage’ and ‘ have you tried reins?’ Which of course I have outside but I am not going to keep my daughter on reins in her own home. I felt soo disregarded and angry at the whole situation. Is there anything further I can do in terms of pressing for housing to consider my daughters needs? I have provided various supporting letters from health professionals and others supporting us and I am also awaiting an OT assessment but the council have said they won’t do anything in terms of my priority for housing etc. Thank you in advance

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