Disabled Facilities Grant

you're special ?

who are u talking to ?

i don't know what the dfg is. is it something to do with the government? but yes. i asked the council for a walk in shower last month and they came to assess me. they said no problem, you can have one. i'm now on a waiting list but they say it will take 12 months until they are able to do it because of the demand.

this person is toast the discussion is 8 years old

How did this end up going?

ive an an autistic son who likes quiet but we have lots children next door , so we think soundproof window . would help

Well, just sent out a long email telling them that I don't have hyperacusis I have auditory hypersensitivity so their recommendations do not apply!  Someone having a panic attack can have the same symptoms as someone having a heart attack for instance yet you wouldn't treat them the same.

Also, evidence that by far the most common causes of hyperacusis are noise injury or head injury, neither of which apply to me.  I also found some great links about a study into the causes of auditory hypersensitivity in autism and some which show that Auditory Integration Training (AIT) which is sound exposure that is a supposed treatment for hyperacusis does not work for autism, as I'm sure she had spoken to me about this during her assessment and in any case it's the opposite of what they state, which is that measures to decrease noise such as insulation exacerbate the condition!

I rounded off with information about the Equality Act 2010 and links to the Leading Fulfilling and Rewarding Lives strategy and the Autism Strategy as it includes housing and states that:

"People in charge of support in your local area should listen to what people with autism and their families and carers need."

"You should have a say in all decisions about your support. And you should get the support you want and need."

...and informing them that adherence to these laws is not optional!

As there was no option for asking them to review their decision, I then copied the email to the ombudsman because the enclosed leaflet states that that is the next course of action if you are disatissfied with the outcome of your assessment.

When, when are the authorities going to start following the law!  They are still untrained in autism, jumping to wrong conclusions, lumping us in with other conditions that do not apply, refusing support, refusing assistance and fobbing off!  Individual staff are totally unaware of their responsibilities as it seems are whole departments and whole authorities.

Why are the requirements not filtering through to them?  Why are urgent directives for distribution to all staff not going out?  Why are managers not being given training to then filter on down to lower graded staff?

Well, what a wasted experience.  I had my report and letter today following my OT assessment.

Apparently, having labelled my auditory sensitivity as hyperacusis, they have stated that the housing adaptations department having commissioned a report (generally, not specifically to me) and the report containing information from a "number of sources which included written literature, abstracts from the 1st international conference on Hyperacusis (2013)" and information sought from a clinical specialist in hyperacusis.  Supposedly, this report "showed that the evidence clearly indicates that soundproofing or reducing the normal sounds of life only lead to increased sensitivity and exacerbate rather than improve the symptoms of the condition."  Because of this they have refused to help me with the DFG.

Ironically, elsewhere it says in the report that I am at risk of increased stress levels and decline in mental health.  So they don't mind leaving me in this situation which will do just that.

So, I thought I would start double-checking their evidence.  I Googled "best treatment for hyperacusis" and immediately found www.hyperacusis.org.  The specific type of hyperacusis is known as misophonia which leads you to their link to http://www.misophonia-association.org/.  There is a part about noise-induced painful ears which says:

Exposure to sound can make this condition worsen over time and should be carefully diagnosed by very highly trained professionals including otologists and audiologists.  A person with this condition is advised to be very cautious about pursuing treatments that could worsen the pain and associated difficulties.

I have found this website http://hyperacusis.net/hyperacusis/supplement/ which says:

Hypersensitive Hearing 

To the best of our knowledge, these individuals are usually born sound sensitive and do not have tinnitus. This group shares two similarities to people with hyperacusis: they usually have little to no hearing loss; and share the ability, like some hyperacusis patients, to produce an audiogram showing hearing sensitivity at negative decibel levels.

A segment of individuals with hypersensitive hearing are autistic (many of which are non-communicative). Because they are non-communicative, parents of autistic children can learn much from people with hyperacusis to help them better understand what their children are experiencing. We can tell them why their children put their hands over their ears. Not only do these children have difficulty being diagnosed autistic, but many do not get the kind of therapy that might help them resolve some of their sound sensitivity.  Auditory Integration Therapy (AIT) may dramatically improve the sound sensitivity these children and young adults experience.   To learn more about AIT you can visit this website: http://www.autism.org/ait.html

Often children and adults with hypersensitive hearing have specific problem frequencies that make certain sounds intolerable. AIT involves ten days (2 sessions a day/30 minutes a session) of sound therapy which involves listening to specially filtered music through headphones.  The frequencies the patient is sensitive to are filtered out of the music.  For some unknown reason after the patient completes AIT, the problem frequencies are easier to tolerate.  For autistic children, once their sound tolerances improve, their behavior also improves.  Children who have dramatic sound sensitivity should be tested for autism.

Although this special AIT therapy is not a cure for hyperacute hearing, hard data shows impressive results. Unfortunately the founder of AIT (Dr. Guy Berard from France) believes his therapy will work for people with hyperacusis. He is wrong - it makes us worse!!

Children with autism have hyperacute hearing, not hyperacusis! Autistic children are born with hyperacute hearing. Individuals with hyperacusis usually incur a collapsed tolerance of sound through noise injury, head injury or the unfortunate side effects of drugs.

Tinnitus and hyperacusis are almost always made worse by AIT because the therapy involves playing music at levels between 65-95 decibels (too loud for the hyperacusis patient). Almost all people with hyperacusis have tinnitus or eventually develop it.

Some individuals are not autistic but have hyperacute hearing.  This is rare.  Like autistic children, they have little to no hearing loss and no tinnitus. In some cases these individuals (unlike autistic) are very articulate with high I.Q.'s.  They almost exhibit similar characteristics to savants (a phenomena generally attributed to gifted autistic children).  To learn more about savants visit this website: http://www.autism.org/savant.html   Could it be that individuals who are sound sensitive, articulate and very bright are borderline autistic?  Yes, it is called Aspergers Syndrome, which is on the Autism Spectrum.

So they have refused to do anything other than refer me onwards to the Adult Social Care Team for further assessment and have closed my case with the OT team.

I find this appalling.  To have an OT diagnose me with hyperacusis based on talking to me and no medical testing, clearly it isn't typical hyperacusis it is hypersensitive hearing which I have had from birth!  It's a classic example of the council not having a clue about autism and finding selective snippets (which do not amount to proof anyway) that support their case.  Whilst within seconds I have found evidence that supports mine.

I will be contacting their clinical specialist to ask for his feedback on what I have found out.  My council did not bank on refusing an individual who is good at research and is high tenacious!

Just had a visit from the council's OT assessing my need for the DFG.  Was exhausting and emotional.  Will let you know how I got on when I know the outcome.

knew it wouldn't be simple...this criteria makes it a lot more of a hurdle:

* You need to find a Private Occupational Therapist (OT) to assess your needs and your property. They will draw up an initial Adaptation Recommendation with you.

Using the OT Adaptation Recommendation, you need technical support to draw up a final design and schedule of works.

Who will help?

* You can source your own private architect. A list of Royal Institute of British Architects’ practices can be found at www.ribafind.org

If you are applying for a Disabled Facilities Grant (DFG) (detailed below) - you will need to obtain two quotes for the work required from building firms.

You can fund the adaptation yourself or you can apply for a Disabled Facilities Grant (DFG). This is a means tested grant of up to £30,000, based on your income and savings. Your adaptation may be funded, or part funded by this Grant.

* Even if you are applying for the grant, you will need to fund the initial stages of the Adaptations process yourself as this information is needed to make the application. This cost can include the OT, Architect, Surveyors and contractors’ fees. If you are awarded a DFG, It may be possible to get these fees reimbursed.

* There are charities that may be willing to assist you cover some of the costs incurred in this initial stage. There is the on-line charity search at www.ACO.uk.net for further information.

I'm reeling a little.  So, firstly is an OT of use with an autistic person applying because of auditory issues?  Does this part apply for an autistic person?

What if you can't afford to fund the initial costs and the charity doesn't help?  The DFG doesn't guarantee to refund them either, it only says "may" be possible.  It could cost thousands.

This is a stressful nightmare for someone on the spectrum...

I hope you get the shutters paid for.  As they caused the problem they should fund it!  They are affecting your health.

I am haviing a similar problem, ongoing, with super intense lighting outside my flat - I am suffering from extreme tiredness because of it. I have asked the Council to pay for over the window shutters if they cannot turn the lights off at midnight. I am waiting for their response.

My MP has replied, and is contacting Environmental Health on my behalf.

I am in a similar situation IntenseWorld. I live in an ex Council flat (now owned by a Housing Association), on the ground floor. It  has its own front door (I could never live in a communal block of flats), and has just one neighbour above. This neighbour is normally not unduly noisy, although I cannot forget the time she kept me awake all night by having a massive argument with, I presume, her boyfriend.

Sometimes she plays her music very loud, and I have to block it out with white noise turned on to top volume, but thankfully this does not happen often, and she lives by herself.

However, it is the small, household noises that really irritate me. I cannot complain to Environmental health about them because they cannot take action against normal, everyday sounds, and I make the same noises myself!. I am talking about coughing, her walking above me, taps being turned on (why the heck can I hear her water?), low level talking, chairs scraping along the floor, washing machine and vacuum cleaner.

Sound insulation between the properties is very shoddy, and so I live in a constant state of stress. I can only de-stress by spending the weekends with my parents, who live in a semi-detached house. You can still hear the neighbours, but at at least I can move away from the party wall.

I am interested to know what rights I may have to adjustments, like sound insulation.

IntenseWorld, the letter you received is full of rubbish - sound sensitivity is neurological, not psychological, and so the onus is on the Council to provide you with adaptations, as they would if you were in a wheel-chair.

...had a pretty prompt reply with an email address to request the application form (incidentally, not an email address that is on the council's website even when searching for the name of the grant) and lots of information about the grant and housing options.

Amazing what a bit of standing your ground will do - and amazing how fobbing off is always the initial response, how many poor people go off believing they cannot get help?

Not to say our application will be successful of course, it feels like a horse race where you have to get over never-ending jumps, I'm sure they will do everything they can to refuse it on some grounds or other (and if they can't they will no doubt re-write policy so that no-one else can get it on the grounds of autism).

I have now had a response from our council as follows:

"Thank you for your email. If you feel that the level of noise coming from your neighbours property is of an unacceptable level, which someone without a sensitivity to noise would also find unacceptable, Environmental Health can take action against those creating the noise pollution. If you would like advice or information from an Environmental Health Officer, you can telephone Environmental Health on...

With regard to the level of noise that you experience due to auditory sensitivity it is not always helpful to reduce the normal sounds of life by sound proofing a property as this can lead to increased sensitivity and exacerbate rather than improve the symptoms of the condition. Evidence suggests that the best form of intervention for this condition is 'treatment based on the notion of desensitization, where the sound intensity is increased from a low level gradually over time' and this treatment approach should be used in conjunction with Psychological input in the form of Cognitive Behaviour Therapy. With this in mind I would suggest that you seek further advice on dieselisation from your GP in the first instance."

Obviously this is not an acceptable response.  Firstly, she missed my point, that many of the noises would not cause a problem for the average person, or at the most, an irritation.  Secondly, I listed examples of the noise and as they are mainly day-to-day living noises, you cannot complain about those - what council on earth would take action against neighbours for talking, coughing, sneezing.  The walls are too thin, as an ex-LA house it is therefore their fault anyway.

Thirdly, she is talking rot about desensitisation.  Having lived all my life with AS and existed in society, being exposed to lots of noise, my auditory sensitivity has worsened, not got better.  I think I know more than some random NT who has done a study, what I need.  As they replied quickly to my email, no doubt other autistic people have asked for the same thing and they had this paragraph ready to copy and paste into emailed replies.

To my knowledge, noise desensitisation is not a therapy that the NHS provides anyway, and even if it were, for my children it is not a practical solution - plus I am in no way able to attend therapy at the moment.

Prolonged exposure to noise that is above comfort levels can lead to tinnitus, which is debilitating and anxiety causing - and incurable.  My father suffered with this (I believe he was on the spectrum) and it caused him much distress.  I don't want to end up with that.

I have made all the above points in my response to the council, informed them autistic people should not be discriminated against due to having a neurological  disorder as opposed to e.g. a wheelchair-dependent condition and that autism is a legally recognised disability.  I told them I will not be fobbed off and that I intend feeding into scrutiny panels on adult services regarding my experience of support for autism.  I insisted they email me an application form.

I will update when I get a response.

PS I chuckled at "dieselisation" do you think my GP will know what that is if I ask for it!

Thank you so much!

IntenseWorld said:

I wish we could have something like this, with 3 of us on the spectrum we could do with funding to pay for sound-proofing from our neighbours.  Very stressful.

Thanks for this. I was told by the council they couldn't rehouse me somewhere quiet; nor am I priority. Despite being constantly woken up at night / being kept up at night due to the neighbours noise. (which the neighbours deny)

I know the above doesn't help practically but from my experiance it don't harm you if you get legal info too.

IntenseWorld said:

I wish we could have something like this, with 3 of us on the spectrum we could do with funding to pay for sound-proofing from our neighbours. Very stressful.

Considering you have kids who are on the spectrum and yourself, you could apply for this through your council. I suggest emailing them this way you won't have to talk to them and you have written records if you need to rely on them.

Sound Proofing would need to come under the following purposes for which a grant must be approved:

a) facilitating access to the home;

b) making the home safe;

c) facilitating access to a room used or usable as the principal family room;

d) facilitating access to, or providing for, a room used or usable for sleeping;

e) facilitating access to, or providing for, a lavatory, or facilitating the use of a lavatory;

f) facilitating access to, or providing for, a bath or shower (or both), or facilitating the use of such;

g) facilitating access to, or providing for, a room in which there is a washbasin, or facilitating the use of such;

h) facilitating the preparation and cooking of food by the disabled occupant;

i) improving any heating system in the home to meet the needs of the disabled occupant or, if there is no existing heating system there or any such system is unsuitable for use by the disabled occupant, providing a heating system suitable to meet his or her needs;

j) facilitating the use of a source of power, light or heat by altering the position of one or more means of access to or control of that source or by providing additional means of control;

k) facilitating access and movement by the disabled occupant around the home in order to enable him or her to care for a person who is normally resident there and is in need of such care;

or for access to graden.

As I'm going through adult social services at the moment, I do know kids [i.e. those aged 17 yrs and under] who have Autism or any other mental condition then they would be classed as Child In Need and should get support from children social services.

I got the legal info from which covers more on housing adaptions for kids:

http://www.councilfordisabledchildren.org.uk/media/80206/CDC_LH_Chap_6c.pdf

Most of it applies to adults too.

Plus this is just a part of the children's legal handbook which goes on to your children's rights for support in education, social services etc.

At least it may provide some help.

urspecial

I wish we could have something like this, with 3 of us on the spectrum we could do with funding to pay for sound-proofing from our neighbours.  Very stressful.