There are growing signs of a DWP push to claim that conditions like ADHD, autism, anxiety and depression are less likely to lead to significant additional costs and, therefore, should be treated differently by the benefits system. In order to challenge this argument, we’d like to hear about the extra costs you face if you live with one of these conditions, or care for someone who does.

Cost-free conditions

Jean-André Prager is a member of the Timms review steering group.  He is also the co-author of a new report for a right-wing think tank calling for up to 70% fewer child DLA awards for mental health, learning difficulties and neurodevelopmental conditions.  This would apply both to new and existing claimants when their award is reviewed.

Prager argues that needs such as tube feeding, oxygen or substantial mobility assistance have readily identifiable costs.  But he claims that “where the principal additional need takes the form of prompting, behavioural management, supervision or motivation, the burden may fall primarily in the form of parental time, vigilance and complexity rather than direct expenditure.”

In other words, mental health, learning difficulties and neurodevelopmental conditions take parental time but are relatively cost free conditions.

Secretary of state, Pat McFadden told MPs in June of this year that he had raised the issue of neurodevelopmental conditions with the Timms review steering group, who are tasked with redesigning PIP: 

“In particular, there has been an increase in conditions like anxiety and depression, neurodiverse conditions and so on. Is this benefit fit for purpose in the way that it is designed, in dealing with that variety of conditions? That is a very interesting question for the reviewers. When I went to speak to them a few months ago in one of their sessions, that is the question I put to them to consider.”

McFadden doesn’t directly call for cash awards to be replaced, but the implication is clearly there.

And in July this year, Timms was asked by Tory MP Joe Robertson whether he accepted that “a system of cash payments to some people with conditions such as attention deficit hyperactivity disorder, where half the claimants are aged between 16 to 24, is not what they need most?”

Timms responded that “The steering group is clear that the provision of cash to meet the additional costs of disability is vital. We will not be moving away from the importance of that, but I think there is a question about whether the process can also point people towards help that may be valuable to them in addition to, or in some cases perhaps instead of, a cash payment.”

The possibility that some people could get help instead of a cash payment for conditions like ADHD is, therefore, one that the Timms review is considering.

DLA for children

Benefits and Work believes that autism, ADHD and mental health conditions result in substantial additional costs when caring for children. These may include:

Transport:  children may need accompanying on journeys when other children of the same age travel independently.

Clothing: frequent replacement because it gets lost or damaged, clothing that meets sensory needs.

Learning and activities:  additional learning support and specialist play schemes.

Sensory aids and adaptations: noise-cancelling headphones, ear protection, suitable lighting or blackout blinds; specialist software.

Food:  cost of wasted food, compulsive eating or the need to eat particular foods.

Household items:  cost of replacement because of breakages or rough handling.

Home education:  the cost of materials, tutors if available and travel associated with home education because your child was bullied or insufficiently supported at school.

Healthcare:  because the assessments or treatment your child needs are not available on the NHS or the wait is impossibly long, you have to pay for them.

Lost income: time off work to provide additional care, including when a child is excluded from school.  DLA is not an income replacement benefit, but this is a major cost for many parents.

PIP for adults

In relation to adults and PIP, some of the costs of these conditions may include:

Transport:  taxis because of difficulty navigating journeys on foot or using public transport. 

Shopping:  the cost of deliveries because you are unable to visit supermarkets or shops.

Food:  ready-prepared meals because difficulty initiating and completing tasks or executive-function issues prevent cooking.

Sensory aids and equipment: as above.

Private assessments and therapies:  especially private sector mental health support, because it may not be available on the NHS.

Utilities:  more heating and electricity because your condition means you seldom leave home. 

Managing money:  problems with managing money lead to late-payment charges and additional borrowing costs.

Help at home:  because of fatigue or difficulty initiating and completing tasks you may have to pay for help around the home - including cleaning and gardening - in order to keep it safe and habitable.

Tell us your experience

We’d like to put together some evidence to challenge the cost-free conditions argument.  So - as a first step - we’d like to hear from readers who live with ADHD, autism, depression or anxiety or who care for someone else, including a child, who does.

What are the extra costs involved?  Can you estimate how much extra you spend on different activities?  Please include things you need but cannot afford, because having no money to spend does not mean having no additional costs.

If you can, give rough weekly, monthly or one-off amounts.

You can leave a comment below or contact us to tell us more.  We may publish extracts from your email responses anonymously, so please leave out identifying details and only include information you are comfortable having published.

 

Comments

Write comments...
or post as a guest
People in conversation:
Loading comment... The comment will be refreshed after 00:00.
  • Thank you for your comment. Comments are moderated before being published.
    · 3 days ago
    Supporting children with these conditions is not cost free, Costs for things you wouldn't normally have to complete, An instance of this is soothing by way of taking them out in the car every day to help settle them and give them time away from any issue that bothers them or triggers that would be there going for a walk or just by staying in the home at that moment. Food is also a big one and although food costs are always going to be there it is accommodating to their need at that moment. So outside of the family shop a child's needs may differ one of mine has nut allergies so this needs to be taken into consideration and the other wont eat unless it is specific items. Also time away from work costs the family so when you use things such as unpaid leave to care for your under 18 child at times when other children wouldn't need that care the 2 months between both parents is a hidden cost to the family in lost income. Extra laundry costs and replacing lost items we all know how many coats or bags full of Pe Kits and school jumpers cost when kids who have no attention span forget to pick up their own belongings from a classroom the bus stop or if they even remember having it were and when. roughness with items as they seem to be able to break anything by accident. 
  • Thank you for your comment. Comments are moderated before being published.
    · 5 days ago
    I support an autistic friend who suffers from panic attacks, which are often triggered by pavement cyclists and scooterists. Additionally, she can't cope with crowds or loud noises, and gets triggered by crowded buses and people playing phones loudly. As a result, she often needs to use taxis in order to avoid busy streets and buses, especially at times when kids come out of school.
    • Thank you for your comment. Comments are moderated before being published.
      · 2 days ago
      @robert Brenchley As an autistic person, I just want to say, thank you for supporting your friend
  • Thank you for your comment. Comments are moderated before being published.
    · 7 days ago
    i find genuinely, having adhd the biggest cost for me is food, yes for the average person food shops are expensive however i find with myself if there is a certain food ive discovered and i really like it or hyperfixed on it, it becomes more like a craving and even if i eat a full meal if i dont get this extra item of food that i need to calm me down i can get quite annoyed or not sleep until ive done it ahaha also does not help that i have OCD to soooo for example last night i ate all sorts but i felt like i needed something and couldnt think so after raiding my cupboards and already spending £40 in morrisons on some bits i was ready to go to bed but couldnt settle until i walked to tescos at 8:30pm at night to get a block of cheese and some ice to some this might sound strange but im obsessed with ice water and blocks of mature cheddar and well cheese is not cheap. :) 
  • Thank you for your comment. Comments are moderated before being published.
    · 9 days ago
    Having anxiety and depression through chronic illness causes extra money in many areas.  One for me is electricity bills.  Every month, I am £700 or more. I don't have my heating on all day.  I rely on a blanket and hot water bottle.  I physically dread the thought that it is coming to the time, when my bill appears.  None of that help an illness!!!!!  Politicians don't think of how people live, as they don't need to worry about bills.  Andy Burnham is hitting the poor and chronically I'll right in the face.  I had more faith in him, but that is now gone!  He won't get my vote again! 
  • Thank you for your comment. Comments are moderated before being published.
    · 9 days ago
    My son is 30 and receives from me, what the Government term "cost free" assistance.  What this means in reality is that since he has been adult and away from school the caring responsibilities I have, have increased exponentially.  I still try to work full time, but have to be self employed as my caring responsibilities prohibit a standard job.  Social Services told him he needed to be independent so he moved 70 miles away from me, so now I have to travel 70 miles each way to assist him, and some bad days I have to do this several times.  

    I have to fund a house keeper for him to ensure he is eating, washing, etc and I carry out all his paperwork things and manage his money, for what that is worth.  

    I seem to spend my whole life safeguarding him from safeguarding as they would leave him to stay in bed all day and starve to death because they write on their form that he is not engaging.  When they are paid to engage with him not the other way around.  They deliberately make things difficult for him to ensure he cannot engage.

    At the moment when he gets some work experience to do, I have to put a plan in place to support that, and again this means my own work gets shelved and I find myself working into the night.  My own health is deteriorating as my priorities are my son's well being.  It is insulting to suggest I am not pulling my weight with my parental responsibilities and that the services I provide are cost free.  Fortunately because I work all hours God sends I am able to support my son by providing a house keeper each week for (4 hours) but once this stops the wheel drops off.  

    Having PIP helps a lot, being without this small amount extra actually we would both require more help in reality not less.
        
  • Thank you for your comment. Comments are moderated before being published.
    · 10 days ago
    I have been depending on taxis and takeaways/ready meals as I have mixed anxiety/depression and my symptoms of PTSD regularly resurface and I am often not safe to do meal prep/cooking in the kitchen by myself. I have home carers from an agency but they often refuse to go shopping for me as they say they are tasked with dragging me out so that I “engage with the community”. On every visit. It has been like  Nightmare On Care Street (!).
    I have also had many falls and injuries resulting in  lower limb injuries requiring me to be treated in A & E, due to severe anxiety, during these visits, which they refused to help me with as they say they are “only support workers not carers”. I am currently recovering from these injuries and am trying to get this level of my care provision changed. Because the care agency behaves  as if my anxiety is completely invisible, that it doesn’t exist. 

    So Uber Eats deliveries know me very well and this is a major cost for me which  PIP supports, as well as the taxis when I go out. It feels like I am propping up the livelihood of my local taxi company sometimes, as I too live in a semi-rural area.  I do feel sometimes that we are having to deal, not only with managing our own and/or family members’  conditions and many of the associated costs, but unfortunately also with the holes in a broken social care system. What this can often mean in practice, is associated extra expenses which remain not immediately apparent. 
  • Thank you for your comment. Comments are moderated before being published.
    · 10 days ago
    I need to have all my shopping delivered as I cannot be around crowds in busy supermarkets. I need to use aids in my home for bathing, dressing, opening bottles and tins. I have to have my medications in blister packs that I have to pay for as my GP no longer approves or authorises them. I need someone with me if I have to make an unfamiliar journey. 
    When I’m hitting rock bottom I pay for private counselling as the waiting list for nhs is too long. 
    I’m constantly having to change clothes and bedding due to incontinence. 
    I survive on ready meals or crisps. 
    I suffer conditions where the cold makes me a lot worse and I feel the cold more so than others, so use the heating a lot. 
    I guess I average an additional £600 per month regularly, that’s if I’ve managed to get through a month without spending my bill money on other things. 

  • Thank you for your comment. Comments are moderated before being published.
    · 11 days ago
    I was diagnosed with audhd (autism and ADHD) in my 60s. It is recognised and evidenced  that the later the diagnosis the more costs of late diagnosis there is in terms of mental health costs. I have had life long anxiety and multiple conditions that were also late diagnosed eg Fibromyalgia (diagnosed at 50), ME/CFS diagnosed at nearly 60 and dysautonomia. Rarely do people have exclusively autism and/or ADHD. They are highly associated with the conditions listed above as well as HDS (hypermobility syndrome) and a multitude of other conditions. In the 2010s they talked about putting mental health on a par with physical health but once again MH is the first to come under attack. Oh and actually autism is a neurological as is ME/CFS and many overlaps between the two conditions. In fact, many invisible physical or neuro conditions have been demonised by the atrocious Wessley. In any case, anxiety is completely debilitating and characterized by completely physical symptoms: shaking, sweating, palpitations, hyperventilation, stomach upset, IBS, irritable bladder, dizziness, migraine, jelly legs and so on and so on. Sick of it being an easy target from people who are clueless. As for extra costs - employing a PA/help for housework, laundry, gardening, online shopping, transport (taxis to appointments or to see family £125 each way). Someone to accompany me to medical appointments, heating (I am always cold) and much more.
  • Thank you for your comment. Comments are moderated before being published.
    · 13 days ago

    Both my 17 year old son and I are neurodivergent- both diagnosed with autism and I've also been diagnosed with ADHD (he likely is AuDHD too). We both have low tolerance to stress and struggle with anxiety and generally overwhelmed nervous systems. This takes a physical toll too: IBS, extreme muscle tension/muscle spasms and RSI (that limits my activities), IBS, food intolerances, GERD, dietary restrictions, possible problems with nutrient absorption, low body weight, B12 deficiency, anaemia; in my son's case hypermobility in joints, collapsed arches and asymmetrical bones which have caused him pain when walking. I could go on, but for me, it's mainly stress and over-stimulation of nervous system and problems organising myself and tasks etc (executive function). Neither of us have social lives and have problems with self-esteem and bouts of depression. The point is, neurodivergence impacts on every aspect of life and this does incur extra cost but unfortunately, most people don't understand! 

    Despite having 3 degrees (including a PhD!), caring for my son and many of the problems mentioned above have meant that the work I'm able to do is very limited, so I'm on a very low income. If our PIP money is taken away, I might not afford to pay for essentials such as mortgage, food and bills! If I am forced to work regularly, I am likely to have a nervous breakdown and my health will decline further.

    At moment, PIP also pays for:

    Counselling
    Acupuncture
    Physiotherapy/other therapies as needed
    On-line shopping
    Special dietary requirements
    Vitamin B12 injections (NHS provision insufficient to control the neuropathy I experience)
    heated appliances to help with muscle pain/circulation
    topical balms to apply to muscle pain
    extra heating bills due to cold sensitivity

    Up until January, we also had a dog (we called him our therapy dog). He was a comfort and source of joy to us both. He got us out of the house and gave me some structure. Since he died, I have been too worried to get another dog in case we lose our PIP payments.

  • Thank you for your comment. Comments are moderated before being published.
    · 13 days ago
    I have ADHD and autism, as well as a number of other mental health conditions

    My partner acts as my carer, this often requires her to leave work to support me or attend appointments with me, which has previously led to her losing a job, and often suffers less pay due to the caring role

    I am unable to cook for myself, so ready meals or takeaways are very common for meals which cost significantly more (not to mention the health implications which will have a direct cost on the NHS in the futue). We also get food deliveries as my partner is keeping a full time job while caring for me, and finding time to shop is very difficult

    I pay for private therapy as the therapy offered by the NHS was not sufficient, at the moment half of my PIP award per month goes to this. I was recommended to get another type of therapy on top of this but cannot afford that too

    I have SAD, and take vitamin D for it but struggle with tablets due to my autism, so pay out for more expensive spray versions. Equally, I cannot tolerate minty toothpaste so pay extra to have flavoured

    I cannot manage in taxis or public transport, and live in a rural area, so need to drive/be driven everywhere - with diesel prices going up this is becoming a huge expense

    Because of my conditions, and experiencing burnout in my early twenties, I have regressed a huge amount of skills, and lost my job at the time. No other employment has been suitable for me besides running my own business - which comes with so many additional admin tasks, that I make very little income at all. 

    I use earpods out and about, but often misplace them due to my ADHD, meaning I have to buy new ones regularly. I use ones with noise cancelling, and these are more expensive. If I wanted o get ones that are trackable so I lose them less then this is again another increased cost. 


  • Thank you for your comment. Comments are moderated before being published.
    · 13 days ago
    In response to the statement 'some children’s needs primarily involve parental time rather than direct spending' I would argue that the opportunity cost of the parents time needs to be taken into account. If the parent wasn't spending that time with the child they could be doing something else. If fit example they were able to spend that time earning money then the earnings lost are a cost. 
  • Thank you for your comment. Comments are moderated before being published.
    · 13 days ago
    My daughter has just turned 16 and is diagnosed with AuDHD. Her needs evolve constantly so we need the flexibility to respond instantly, we can't be waiting for slow government schemes. 

    For example, her safe foods are minimal. I spend £25 per month on numerous vitamins and supplements, plus £100 per month on protein powders to try and plug in the gaps left by her restricted diet. Diet isn't just essential for growth, but also her ability to function. When she doesn't have adequate food and drink, she's dysregulated and her health needs increase. 

    Then we have additional kitchen equipment such as a powerful blender (£100) to be able to make food at a consistency she can tolerate.

    She's unable to access health care directly, so I have to buy medical equipment (otoscope when she had ear infections, blood pressure machine, blood oxygen meter etc). 

    She has extreme sensory needs which means she can't brush her teeth in the normal way. There's extra costs for specialist toothpastes, and toothbrushes etc. 

    She can't use the shower, so products like FreshWipes to clean, and their hair wash caps don't come cheap. I had to buy a portable sink to try and aid hair washes.

    Then there's the issues around clothes, clothes she can tolerate one day, she can't bare the next, so I'm always having to replace items. Her sensory needs are so high with shoes, she has to use wheelchair in public because she can't tolerate walking in shoes for more than 150metres. I didn't have to pay the VAT on the wheelchair, but I did have to pay for it. 

    This is by no means the full list!

    All of these products cost money, none of them work perfectly. I've had no option other than to give up work and care for her after her mainstream school experience left her so traumatised and unwell that she could no longer attend. Three years later, we still don't have the correct health care because CAMHS are shockingly bad with neurodivergent conditions. If we didn't have DLA, how would I pay for what she needs when the system has forced me to give up work?

    It's ignorant and offensive to suggest it's just parents time as if parents are nothing. People are deluded and shouldn't be in their roles if they think such things. 
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    My son has ADHD (diagnosed when he was 4) and trauma related mental health issues (he has lived with me under a kinship care arrangement since a young child). I have spent literally thousands of pounds to give him the support he needs, as well as on clothing and possessions that he has lost or damaged.  I was constantly replacing the locks as he lost his keys regularly and then had a keysafe installed.  Since he was 18 he has incurred costs through losing his phone or dropping it every few months, losing his wallet, driving licence and passport etc.  All very expensive.  He has poor executive function and intends to cook but mostly gets food delivered.  He using showering as a self soothing aid and on top of the extra costs of water and gas, the water damage from this has meant we have had to renovate the bathroom twice.  This is only a small sample of the additional costs of  his conditions, to both me as his carer and to him
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    Just a couple of hidden costs that spring to mind, relating to my son with ADHD and undiagnosed Autism.

    When he was a child:

    Attending so many hospital appointments for ADHD check ups (when medicated) - my time off work and the costs to attend specialist centers which were not local to us (as there were none).
    Differrent hobbies and Clubs, requiring equipment and uniform to attend then falls out of love with the idea after a couple of weeks and refuses to attend again.
    The cost of having a dog (food, vets, insurance) to calm and soothe my son particularly at night who never fell out with him and stayed his firm friend for 16 years into adult hood and expected nothing in return or gave off mixed or confusing messages unlike his peers.(Best money we spent).


    Attending numerous hospital appointments when being beaten up for saying the wrong thing to the wrong person and not being able to 'read the room' and coming worse off with broken bones/concussion etc.  Not recognising danger and engaging in his own risky behaviours for dopamine hits.

    Attending hospital when inpatient from swallowing a coin and getting it lodged in throat for 3 days when playing a drinking game with friends for a 'dare'.

    The gym memberships that he can use for months at a time as unable to leave the house for sometimes weeks at a time because of the PTSD, depression and anxiety.

    Expensive but valuable private therapy to deal with his depression, anxiety and PTSD from various assults as NHS therapy is only limited to 8 or 12 sessions then just as he starts to feel comfortable and get into a rhythm the fixed term sessions end and he potenitally has to start again from the beginning with a new therapist.

    Impulsive spending followed by deep regret leading to poor money management.
    Being scammed by fraudsters as did not see it as 'too good to be true'.
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    Public transport is often next to impossible for me because of anxiety and struggles with time keeping (and finding bus timetables impossible to read) meaning i have to take a taxi most times i leave my house which becomes incredibly expensive! Trying to spread misinformation that autism, adhd and other neurological conditions ‘don’t really affect people that much’ is selfish and ridiculous. 
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    I find it deplorable that the value of parental time is being used differently by governments/politicians depending on what they want to achieve in that moment. When it suits,  "parental time" is deemed so incredibly valuable to the economy that the government outlays huge costs in free childcare to get/keep parents in work BUT "parental time" has zero value when it comes to looking after children/adults with autism, ADHD etc to justify removing financial support for certain disabilities. 

    Writing as a parent of two autistic young people (one 18 years and ASD-PDA, ADHD, partially deaf, one 14 years and ASD-PDA). 

    The greatest cost is me NEEDING to leave my very well paid career in order to care for/advocate for/educate and look after my children 24/7 when the schooling/EHCP system totally failed them. This resulted in multiple family members being traumatised to the point of requiring therapy (needing to be privately paid for as the NHS offering proved wholly inadequate). The ongoing financial cost impact of that is that as I have been a full time carer for SO many years I have no financial stability, no savings, no pension so my future is looking bleak. Without their DLA and PIP I can't afford to live, so whilst it isn't seen as a replacement income benefit for many many families it effectively takes that form.

    I've been required to pay for private diagnoses, private therapy, private OT/EP/sensory reports because either the NHS wait was too long or the LA refused to assess or the LA/NHS assessments were too superficial.

    I have to pay privately for therapies because the NHS refused to treat because the risk assessment done said they couldn't.

    I have paid for 1-1 access to hobbies as they cannot attend group sessions, e.g. karate, fitness, running coach, pilates that all directly support their disability needs. 

    My eldest is unlikely ever to drive, cannot access public transport alone so I have the actual costs and my time costs associated with that. 

    When they were younger I couldn't take them to the supermarket due to them getting distressed so had to have home deliveries for many many years. Then there is the wasted food due to sensory issues and restricted eating.

    There is the cost of sensory equipment which for some reason is ridiculously expensive. The cost of specialist equipment such as car restraints to prevent them getting loose in the car. 

    There is the cost of home education which I was forced into by the failure of the EHCP/School/LA which took 10 years for them to admit and finally provide a full EOTAS package. But I still can't work because he cannot access any of it without my support, prompting, organisation etc i.e. my time.

    There is the hidden cost of days out you pay for in advance that you arrive at and then can't even get them out of the car to access, or we have to leave after 10 mins. 

    The hidden additional cost of holiday accommodation needing to be a specific set up or size to reduce overwhelm by not having to share with siblings etc.

    I could go on but I've run out of time.
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    Adhd paralysis with anxiety due to inability to sort thigs out resulting in fines . 
    All sorts of fines..late payment fines parking fines paid in full rather early on deadline..paying bigger instalments amounts than can afford.
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    My son is 26:, he  suffers ADHD/AUTISM / DEPRESSION WITH SEVERAL SUICIDE ATTEMPTS /ANXIETY and is a Recovering Alcoholic  ( used as a crutch because of his inability to process emotions ) 
    Severe Rejection Dysphoria
    Low Frustration Tolerance 
    Anxiety 
     

    I spent an astronomical 45% of.my UC/Disability benefit on Diesel running him around . It absolutely consumes my whole.life , for my son to stay sane and ALIVE I have to constantly keep him busy and focused  all I may add at my own expense as well as paying all my bills and  feed us and our Dog ( our Dog helps him enormously emotionally ) 
    Music lessons . ( he is an incredible guitarist ) 
    Gym Membership
    Online Gaming costs ( it's the only way he can talk a nd engage with his friends atm and it keeps him calm  ) 

    And That is just my son's needs , there's never any money left to take my own needs into consideration !!  Even though I'm not well myself. I'm his mom . That's what mins do !!
    Ironic really after forced retirement due to chronic arthritis as an Dementia Nurse .after 25 years in still  caring for someone  else !!  hopefully ne day someone will be there to care for me , but I doubt it 



  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    My daughter has autism and is on a waitlist for an ADHD diagnosis, as requested by the autism specialist. She also suffers with anxiety and has school trauma because of the way she was treated. She has a PDA profile. 

    Firstly, I have to home educate because there are no suitable school places for my child where her needs would be met. How am I supposed to be able to live on a 10 hours a week wage? Yes I still manage to work currently because my mum is able to help out, but this could stop at any point due to her health too. 

    Secondly, the food bill rises. Esmeralda has eating difficulties due to her anxiety. Some days she will eat very minimal foods and overall has a list of foods with few items that she will actually eat. We end up with a lot of waste due to this, especially fresh fruit and vegetables. 

    Next there’s clothing. The amount of clothes I buy for her that are non returnable, such as knickers, only to find out they’re uncomfortable and she can’t stand to wear them. It costs us a lot of money and don’t even get me started on shoes. 

    As I said earlier, Esmeralda is home educated. This costs money. I have to pay for resources that actually suit her due to her PDA, I take her to groups when I can and days out that she is comfortable with when her anxiety is low enough. It all costs money. She is very creative which we use to our advantage as part of her learning, which isn’t cheap. The heating and energy bills also cost more because we’re at home a lot. 

    When we go out, we cannot use public transport due to my child struggling with noise, public spaces, health anxiety and emetophobia, so I have to have a car to make sure she can even go and do the food shopping, let alone go out and enjoy herself. She does not trust taxi drivers, taxis can be a real trigger for her. 

    Children with ADHD tend to have lower dopamine levels which often need topping up due to brain chemistry. This often costs money too. Of course we use natural ways such as exercise, but often helping her to regulate these dopamine levels and feel good costs money too. 

    There is a lot of extra expense incurred when you have a child with additional needs, we have to fill in paperwork already to prove that. The paperwork breaks our hearts as parents because we often dont realise how much help our child needs until we write it down, because as parents, we just get on with it and suffer any consequences. If this money was to drop, it would see a lot of child and parent. Let’s not have that blood on anyone’s hands. 
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    Written for my son. He would be unable to write it himself!!!

    Age 22 Autism ( probable adhd unconfirmed), bipolar- 1 depression and mania , Anxiety
    Type 1 diabetes

    Mobility- taxis
    Not currently learnt to drive.
    If he did drive would still need someone to accompany 
    Petrol if someone takes me.
    I pay someone to accompany me to appointments / shopping/ social interaction very rarely/ volunteering - they stay with me.

    Activity - volunteer fishing coach.
    Fishing 1-2 x per week with support worker. This benefits my mental health, helps regulate my mood.
    When i volunteer -helps the school children.
    This is my only social interaction.
    Cost- transport there and support worker
    Bait- weekly expense
    Annual fishing membership.

    This activity is in my plan supported by my social worker and psychiatrist. Costs are related to my disabilities  as I need this support to give me purpose and structure.

    ( This is not the basic costs that someone has for a hobby such as the fishing rods and lisence)These are additional support costs, i have not listed the basic equipment costs.


    I live in supported living and pay the maximum contribution for 25 hours 1 to 1 support which I wouldn't have to pay if I didn't have my disabilities.
    There is 24 hour support on site.
    I require support to function at a basic level.

    Ordering medication. - pay for delivery and blisterpack
    Food shopping -  I need help to buy healthy food. 
    Even so I buy ready meals.
    I buy ingedients to cook which go out of date as I don't plan propperly.
    Have to buy food to support my type1 diabetes.
    Struggle to budget

    Help with
    Cooking
    Cleaning
    Personal care
    laundry increased-cost due to bladder problems. Food spillages.


    Replacement clothing
    Footware - due to continual pacing
    Trousers- soiling, tears and rips. Frequently muddy, wet, dirty due to fishing and activity.

    Equipment breakages /repairs above normal use  or frequency/ cost to repair

    Wall damage
    Doors and hinges due to banging/ heavy use
    Plates /mugs etc
    Phones- thrown, dropped, dopped in water
    Tablets- as above

    Charging cables
    Head phones or earbuds

    Lost equipment.
    Even with support,  items get lost.

    Extra smart phone for support staff to monitor diabetes 24/7

    Sensory support items
    Communication aids....

    Run out of time to complete futher, It is clear such disabilities do have costs.
    Families also support costs ontop where / when possible and provide hours and hours of unpaid care