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.

 

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  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    For autism I would need to pay for someone to accompany me on any social outings as I find them so aversive (I mean activities where I would need to interact with anyone at all).
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    It is exhausting having to constantly justify why cash support is the only thing that keeps us afloat, especially when the current narrative treats neurodivergence and mental health as targets for cuts rather than conditions that require real, practical adaptation.

    The push to restrict or replace PIP for people with ASD, ADHD, and mental health conditions ignores the actual reality of living with these conditions. For me, PIP isn't extra pocket money; it is essential funds that keeps my life functioning.

    I rely on my mobility award because I cannot undertake or carry out a journey alone due to my sensory profile and disability. Public transport is frequently inaccessible or a direct trigger for overload, so that cash goes straight toward necessary point-to-point transport like supported transport just to get around safely, mostly to hospital appointments.

    Beyond that, my PIP covers the direct costs of managing my sensory profile, specialist aids and tools that statutory services don't provide. It also allows me to fund independent local micro-providers and a help via social worker to assist with the areas of care and admin that standard, stretched services completely fail on or where I fall through the gaps due to narrow LA criteria.

    When you live with ASD, ADHD, and physical conditions like EDS, statutory social care is rigid, impersonal, and rarely trauma-informed. Cash autonomy is the only reason I can source flexible, consistent support from micro-providers who actually understand neurodivergence. Taking away or reducing cash support under the guise of 'reform' doesn't help people work or get better; it just strips away the safety net, increases isolation, and punishes people for conditions they didn't ask for. We need cash payments precisely because rigid state-run services don't work for us and are so underfunded we fall through the criteria gaps.
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    My adult daughter is autistic.  She is 28. We have to pay for counselling long term due to depression, anxiety ptsd and ocd.
    We have to pay extra for specific food as well as delivery.  We have to pay towards care for support to take her out in the community.  We have to pay a gym membership because she is overweight from taking that many tablets that cause weight gain. We have to pay extra for healthy food options. We have to pay extra for heating as she is sensitive to cold weather.  We have to pay for subscriptions to tv networks she enjoys. We had to pay for private reports when she was 19 to go to tribunal and get her a placement she needed and pay solicitors.  
    My son is 14 and has ADHD and learning difficulties.  We had to pay for a private diagnosis.  We have to pay for private prescriptions AND medication monthly. We have to pay for clothes to be replaced as he always loses them. We have to pay for devices that get broken. We have to pay for a tutor to help with his learning.  We have to pay for clubs  such as football because he needs to be active and a gym membership  we have to pay extra for quality bedding and clothes as he is sensitive to clothes that are not soft enough. We pay extra for certain food he eats and won't eat cheaper versions.  
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    Autism, depression, Anxiety, I have had the UC , DWP , contacting my mother since January every single month asking for bank statements , I'm sick of it , it's causing me to be depressed, they are calling me at 12 o'clock on Thursday 22nd October , and my mother has access to my journal and asked why they are contacting me for a 30 minute conversation and the journal messages have been ignored, so I suppose I will find out what they want tomorrow, it's causing me great anxiety and my mother anxiety too because she's not very well herself. Can I do anything about it , or do I have to just put up with them doing this to me , I only joined UC 26th September 2025 , so I was barely able to send any bank statements in when they first asked in January I certainly didn't have 4 statements which they asked me for at the beginning of January , and they have continued to ask for statements every month , I don't go out anywhere so they are going to be looking at a very sparse statement with few transactions , and just transfers of money to help my mother with the bills and food which she is in charge of . It just seems like I'm being targeted for no reason this particular person who is called Robert just keeps leaving messages and keeps calling me mums phone number to ask for the statements over and over every month should I report this and if so who do I report it to ? 
    • Thank you for your comment. Comments are moderated before being published.
      · 14 days ago
      @Thomas, via mum Lynn I'm not an adviser but having been through it myself I would say you are worrying unnecessarily. The DWP operates on box ticking and most of it is computer generated. 

      The call is probably to find out why there is a problem sending the statements. If you don't provide statements when asked then of course there will be concerns - they just want to verify that your declared income [if any] is what you say it is and that your savings aren't more the £6,000 - they really don't care what you spend your money on or who you give it to as that is absolutely none of their business.

      You could try calling Citizens Advice if you're worried?
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    Diagnosed AuDHD with Severe Anxiety & Depression. 

    These are all the extra costs I can think of that I have to cover due to my mental health that PIP & UC help with. 

    Rent/Bills - I cannot work and live with family, however I need to feel as though I contribute as my living costs are obviously not free. I do this by paying an amount of "rent" each month. 

    Taxis/Petrol money - I have to pay for taxis and/or cover petrol money for people who are willing to give me lifts to appointments.

    Prescriptions - on UC thankfully my prescriptions are free. However if I had to pay for these I would be paying out a ridiculous amount of money for at least 6 medications every 1-2 months. 

    Therapy - I've been in private counselling for the past 10 years to work through deep set trauma. I currently pay £75 per session every two weeks (this is reduced as my counsellor understands my personal money situation). 

    Sensory friendly clothing - I buy my jeans from M&S or Next (£35-40+ per pair), leggings from Snag (£40+ per pair). I try to buy from Primark when I can however the quality isn't always the best, the fabrics can be triggering for my sensory issues and I can't always handle being out in public to shop.

    I'm sure there more that I can't currently think of but those are the main ones.
  • Thank you for your comment. Comments are moderated before being published.
    · 14 days ago
    To continue the discussion regarding what PIP is for ...my landlady has just advised she wants to sell the property and quit being a landlord. I live in Exeter. The cost of accommodation is staggering. At 58, dual sensory impaired and a type one diabetic, all I will be able to afford (I earn approx £28K a year) will be £800 pcm
     Therefore, at 58, it's back to a bloody HMO. 
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    I’m Autistic, clinically depressed, have severe social anxiety and have suspected ADHD.

    I receive UC and I’m in the LCWRA group. I haven’t yet applied for PIP as I’m too scared to do so. I’ve never received any professional help, apart from CBT on the NHS a few times which I hated but that was the only option I had. 

    If I applied for, and received PIP it would pay for specialised private therapy in a modality that worked for me, hopefully leading to a better life. 

    Although I’m able to clean my flat, it’s mostly surface level cleaning when I feel up to it, so paying for a cleaner every several weeks to do a deep clean would be beneficial for me.

    I cannot use public transport due to my social anxiety, even taxis are challenging, though doable sometimes. I can’t drive. 

    Whenever anything breaks or needs replacing I have to buy brand new online because I can’t face dealing with sales people. I had to replace my fridge freezer and cooker this year and it would have been so easy (and inexpensive) to just go on Facebook marketplace to find something there or go to a few second hand places to see what they had. 

    Even if something is fixable, I’ll just buy another or do without because making phone calls and arrangements is impossible for me. I have no one to help me do that as I’m on my own. 

    This is why the extra money would be so helpful for me and could improve my quality of life. 
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    My son is 28 and has Asperger’s only confirmed by a charity as the wait and information and journey for getting an “official diagnosis” is long complex costly and difficult. He also has PTSD and anxiety from losing his step Dad to a heart attack at him attempting to doing cpr with me. He also lost his “support dog” of 15 yrs to cancer at the same time I was diagnosed with stage 4 bowel cancer and we lost our home of 11 yrs. the costing involved in food deliveries. Product deliveries such as extra washing powder, certain clothing, electricity as the shower is his safe space, help with cleaning I can no longer do, broadband so he can type to penpals. Gaming items that stimulate his brain in finding things can be simplicity for him, calming, he always had to have lights on, there is a need for extra energy also as he sleeps in the day is up all night so our costs run 24 hour. He only eats certain foods in the current market this is costly. If he wants something we don’t have There are same day food deliveries and extra bedding if it doesn’t feel right, replacing his computer pens and pads! Replacing paper and special typical art supplies he will only draw with. He will only wear a certain type of clothing, underwear, certain fabrics I mean not brands and these can be expensive. I have paid help to help clean his room as I’m ill myself I can no longer do this alone. The list is endless and to keep him able to have these things is costly without his money he would never be able to have things and then I don’t know Genuinely where we would be, he’s always said he’d kill himself if I die because he doesn’t know to do anything but trying to teach or change anything is impossible. I don’t understand Where or why these investigations happen to only benefits that are clearly needed by people who don’t want to have to have them. We don’t choose To have to go begging hand in cap and be made to feel less than because we have no other choice, so much is spent on things that could help support some of the benefit system and yes of course some people abuse it and always will but it’s not fair to make the majority suffer for the few when illegals or un-ill people are getting far more support with housing and benefits and grants and considered as far more in need than the people that have lived here all their lives contributed to society or can’t through no will of there own. I’d much rather be able to work be happy and not panic my rent may stop or my food money cut or my sons money withheld and also it’s not just the person who’s fund they cut who suffers for example my rent in a 2 bed council flat is paid based on the fact my son recieves PIP if he didn’t id have to pay a percentage of what I don’t have’ As I already have the moving over from esa to Universal Credit guarantee my money goes down when my rent goes up it will never increase and come ten yrs when inflation is through the roof and we are fighting for food even more people on benefits are only going to suffer as it is. I dread getting old I dread being here ill as I am I dread leaving my adult son I dread each time the phone rings or a letter comes in case it’s something to do with withholding any money. It’s a devastating embarrassing traumatic way to live. Begging for each penny and constantly having to justify it. 
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    Thank you for sharing this list of costs. I posted previously, but I’ve since realised that I’d overlooked several expenses. Here’s my updated list:

    Transport: My young person needs someone to accompany them on journeys that others of the same age manage independently. We sometimes have to use taxis, but they cannot travel in them alone, due to sensory overwhelm, anxiety and difficulties navigating routes on foot or using public transport.

    Sensory-friendly clothing: additional costs from buying clothes that meet their sensory needs, as ordinary fabrics, textures or fits may be intolerable.

    Education and activities: private tutoring because my child does not receive sufficient support at school to meet their learning needs. We also pay for a befriending service because they find social interaction difficult, have no friends and rarely go out. This is an additional expense to help them access social contact and experiences that other young people may enjoy without needing paid support.

    Sensory aids and adaptations: noise-cancelling headphones, ear protection, suitable lighting and blackout blinds to help manage sensory sensitivities.

    Food: additional costs from food that goes uneaten because of sensory or other difficulties, and from needing to buy specific foods they can tolerate.

    Private assessments and therapies: we have had to pay privately for assessments and treatment that are unavailable through the NHS or subject to waiting times that are too long for our child’s needs.

    Private mental health support: CAMHS discharged my child after four sessions because they were unable to meet their needs. We have had to pay for private clinical psychology support at £170 per hour. As my child cannot engage effectively with online therapy, we must attend appointments in person, adding taxi fares both ways because sensory overwhelm and anxiety can make public transport impossible.

    Lost income: I have been unable to return to work because of the additional care, supervision, transport and advocacy my child needs. DLA and PIP help with disability-related costs, while Carer’s Allowance is very limited; none replaces the income lost when a parent cannot work.

    Shopping: Sensory overwhelm makes shopping in person difficult, so we often buy clothes online. This frequently involves ordering multiple items and returning those that do not meet their sensory needs, adding time, effort and sometimes costs.

    Utilities: Our household energy costs are higher because my child spends much of their time at home, increasing our heating and electricity use.
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    With severe PTSD anxiety I pay for needed therapy, food & other deliveries, extra heating and would have to pay for a carer to at least get to medical appointments if my husband, who now has a heart condition, was unable to help me. It is frankly terrifying.
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    I don't know about children, but the cost of having severe ADHD and autism as an adult encompasses the following:
    1. getting caught by online advertising campaigns where you sign up to a free trial and have to remember to cancel before they start taking money;
    2. not keeping in touch with your payments and subscriptions, so you don't notice that money is being collected from your account
    3. not being able to read 'terms and conditions' because it's an interest-based disorder and we can't do things that don't interest us. So we get caught out by fraudsters and tricksters. 
    4. being an easy target for scammers because autists don't lie and don't expect other people to lie
    5. falling for advertising spin again and again and again - with the 'I must have that underwater lawn mower because you never know when you might need one'
    6. Signing up for courses and apps and coaches who all promise to make your ADHD executive function impairments go away and then don't. 
    7. Forgetting to continue with the course and apps and coaches that you've signed up for and forgetting that the payments are still coming out of your account
    8. Signing up for good courses and coaches that promise a money-back guarantee and then finding out that you had to complete the course within six months in order to get the money-back guarantee
    9. Impulsive spending - see above
    10. Being an addict - with no boundaries - so you buy and eat tons more expensive food than other people, or you buy healthy fresh food and let it rot in the fridge because you can't get round to cooking
    11. The biggest expense - losing phones, pens, handbags, money, spectacles, clothes, losing EVERYTHING all the time which all has to be bought again
    12. Not being able to hold down a job so you don't earn money that you need to spend on all of the above, because you can't do the job, you get fired, you can't be on time, you get fired, you fall out with your boss, you get fired. 
    13. Having car accidents and spraining your ankles and breaking your legs and falling down holes and setting fire to things that need to be replaced and not being able to earn money because of all of the above. 
    13. Paying for therapists, hypnotherapists, coaches, occupational therapists, physiotherapists, life-coaches, business-coaches, declutterers, personal assistants, cleaners  - just to do stuff that neuro-typicals find easy. 

    For starters. 

  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    This is unbelievable, every person should be judged based on their individual needs not put in a box and labelled the same based on a condition!  My son has Autism, ADHD, anxiety & PTSD.  We never asked for help until I became a single mum and had to juggle part time work with full time care & finances, I try to pay for private therapy as there's nothing suitable through NHS, I pay for a private course 1:1 so my son gets to learn a skill he couldn't do in a team environment.  We can't use public transport I'm heavily in debt trying to cope on my own, were on a beans on toast kinda diet, I can't visit family as I cant afford diesel & every day is a struggle.  Take away the small financial support we get and we will be homeless too.
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    I spend more money on heating my house during the winter and more money on electricity for an AC during the summer, because my son doesn’t go out due to his autism and ADHD.

    I have to buy groceries that he will eat due to his sensory needs regardless of cost because he can’t eat anything else.

    Replacing broken items also means extra cost.
    • Thank you for your comment. Comments are moderated before being published.
      · 15 days ago
      @Rose 💯 same as you 
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    I spend a lot of money on therapy which is essential as a depressed person.
    I also use a lot of money to pay off debts incurred during my manic phases.
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    As the parent of a neurodivergent young person who is nearly 18, I can say from personal experience that the idea that autism and related conditions are somehow “cost-free” is completely detached from reality.
    My child is cognitively able, but their autism, co-occurring conditions and communication difficulties affect almost every aspect of daily life. They have needed substantial support since birth. Many of the additional costs associated with their needs are not obvious to other people, but they are very real and accumulate over a lifetime.

    We face costs across almost every area of life. We buy clothes that meet their sensory needs, as ordinary fabrics, textures or fits may not be tolerable. We purchase sensory toys and aids to help them manage their sensory needs and everyday activities. These may seem like small expenses individually, but they add up.
    We have also paid privately for speech and language therapy and clinical psychology because CAMHS has been unable to provide the support they need, while the local authority has refused to cover these costs. We have paid for tutoring to help them cope with mainstream education, despite the local authority refusing to consider a specialist school that might better meet their needs. We have also incurred costs for osteopathy, physiotherapy and acupuncture in trying to address their needs.

    When years of trying to secure appropriate support lead to the need to challenge a local authority’s inaction, legal fees can add yet another substantial expense.
    These are not simply optional extras that make life more comfortable. They reflect the practical and financial reality of trying to meet a disabled young person’s needs when suitable support is unavailable or inaccessible. Families may end up paying privately, going without, or struggling to fill the gaps themselves.

    There are also costs that do not appear on a receipt. I was unable to return to work because I've had to become my child’s main carer, advocate and driver. I manage appointments, coordinate services, navigate education and care systems, and spend considerable time trying to secure appropriate support. My partner has made incredible sacrifices to support our family on a single income. Lost earnings and reduced household income are part of the financial impact, even though they are rarely counted when people discuss the additional costs of disability.

    The support we provide also masks the extent of our child’s needs. Everyday activities can require preparation, prompting, explanation, supervision and emotional support. When they manage something, it may be because we have spent hours preparing them, helping them process information or supporting them through a situation that others manage without assistance. Their cognitive ability can make these difficulties less visible, but it does not make the support, or its cost, disappear.

    Our experience of applying for PIP illustrates this gap between apparent ability and everyday reality. Preparing the application required considerable time and effort to document their needs and gather professional evidence. They were ultimately awarded the enhanced rates of both Daily Living and Mobility following a paper-based assessment. This was a relief, but it reinforced an important point: being academically able does not mean being independent or free from substantial additional needs.

    We are now planning their transition to adulthood, including the support they may need in further education, employment and eventually independent or supported living. We are trying to plan for a future in which we cannot always provide the extensive support they currently depend on.

    The additional costs of autism and related conditions are not limited to specialist equipment or easily itemised expenses. They can include sensory-friendly clothing, aids, therapies, educational support, legal fees and lost income, alongside the time and resources needed to navigate systems that do not adequately meet a person’s needs. These costs can persist from childhood into adulthood and place considerable pressure on the whole family.
    Please do not assume that autism, ADHD, anxiety or depression involve few additional costs because someone appears intelligent, achieves academically or has no obvious physical disability. The difficulties may be invisible, but the costs are not imaginary. They are paid directly by families, absorbed through lost income, or borne through unmet needs when families cannot afford the support.
    A condition is not “cost-free” simply because its additional costs are hidden, spread across everyday life, or absorbed by the family.
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    Always cold, extra heating and clothing.  Certain types of clothes so cant get good deals.  Only eat certain food which come from different supermarkets.  Cant get everything at one supermarket. Cost for travel or delivery from each one. Sensory issues with dishes, washing up and food so takeaways from safe food suppliers.  Cant get on public transport even taxis are difficult as cant speak to driver to give location.  Cant go shopping without another person.  Need a reliable car and satnav.  Forgets to turn lights and other appliances off such as an oven.  Needs communication support for dentist, hospital, gp etc.  Needs support to stay in employment.  Getting and staying in work is challenging.  
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    I am a carer for my daughter who was diagnosed Autistic at 14. She is now almost 20. I home educated from 13. 
    Agree with the lists of costs you have suggested. For us it was all of that but to add that to say the issue is, “only extra parental time” is such a discount of what we do and how much that saves the state in care costs
    For example;
    We use an on line school which has cost thousands of pounds. Then the cost of exams to take one GCSE cost £200. Access arrangement for a separate room due to sensory issues an extra £200 PER PAPER! 
    Home invigilator a similar cost. So multiply that by the number of GCSE it’s thousands of pounds. Then A levels are even more expensive. Double the price for the exam itself. So we save the state the cost of educating her 6 years. Whilst we were waiting for CAHMS assessment we tried to help her so;
    Counselling was £60 a session. Then Child Psychologist £100 per session. We could not get any support via NHS so had to pay for these things. She was suicidal, in burn out and worse. We also paid for an OT report several hundred pounds and a number of sessions. Each session cost £75. This was to try to help her manage sensory overload and meltdowns. A private assessment to diagnose her would’ve cost over £2000 but we waited over a year to do this and I had to make a complaint and regular calls, (my time) to get her seen via CAHMS as schools prefer this. Also I was due to go back to do a course to improve my career prospects and was hoping to return to full time work. I now work part time flexible hours around my daughter’s needs doing a low income job. So that “parental time” caused a potential significant loss of income. My daughter’s needs I don’t want to expose here for her sake-but suffice to say so significant I am worried about her future and do not see her as able to work. Carers allowance is a pittance to help top up my income and means pennies per hour. This needs serious review and not be tied to PIP, DLA or AA. Without qualification for PIP I would not receive that-so could not afford to stay home as I would need to try to find a full time job-so who would care for her. My husband works 6 days a week to support the family. We do not claim any other benefits. I have saved the state thousands of pounds by staying home and taking the time to care for my daughter-we are in our 60’s and I worry about the future every day, especially in a world which is becoming more spiteful and mean by the day. It is impossible to quantify how much time I spend with my daughter over and above the time I spend with her sister who is now 22 and doing well at University. I don’t resent it, I love her beyond measure-but our entire family life has been affected. Our world is small.  We cannot leave her overnight. I am her shield, her 1-1 scaffold but it seems that is worth nothing in our society today. I used to be a nurse and then I was training to be a psychotherapist. Now I do part time admin work for minimum wage. The people who do these reports have no idea. It is painful and insulting to read. 🤷‍♀️ 
    • Thank you for your comment. Comments are moderated before being published.
      · 15 days ago
      @VickiT To add to the above, we are home all day so there are additional heating costs too, always prepare food at home-very specific diet which can prove expensive. So no free school meals here! Specific clothes always 💯 cotton t shirts and shorts. Constantly washing them as may change a number of times a day so they wear out quickly so more costs. Extra laundry costs to add to electric bill as wash more frequently. She showers twice a day rather then once due to routines. It goes on…..
  • Thank you for your comment. Comments are moderated before being published.
    · 15 days ago
    My child is AuDHD and won't take tablets (not even the chewable ones). We have to pay a private health firm over £100 per month for liquid medication so he can manage in mainstream education. This was after an initial outlay of almost £1000 for 3 remote consultations and prescription charges for the failed medication attempts.  I won't hold my breath given so many Doctors are in dispute about it. 

    We regularly purchase sensory equipment for the school because even with an EHCP, they're not implementing the support the ed psych recommended in the assessment. One pair of headphones costs £25 and they regularly get broken or lost. I paid for online webinars to try and get up to speed with education law so I could appeal to the tribunal, we can't afford to pay lawyers. 

    SEN swimming lessons are extortionate but we need someone to be in the pool with him to encourage him to keep his feet off the bottom - when I get in the water in a 'normal' session he just stands up and struggles to follow their instructions from the poolside. He deserves access to life skills, the same as any other child. 

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    · 15 days ago
    Carers cost alone is a substantial cost 
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    · 15 days ago
    Autism, ADHD, C-PTSD, as well as several physical conditions that severely impact my mobility and ability to do things physically. My autism is the condition that costs me the most. I can only eat certain foods - it's not a matter of preference, it's a matter of 'I would literally starve if not eating the right foods'. Those foods are often more expensive, and I can't benefit from deals or own-brand versions. I can't usually use public transport, and so require taxis a lot. I have to pay for private therapy, because my autism makes the NHS 'six sessions of CBT and off you go' style of mental healthcare fundamentally incompatible with my needs. I have to replace clothing more frequently due to damage caused by stimming and repeated wearing of the same small number of items.

    My physical health does come with costs, but my autism costs me the most financially. To suggest they're cost free or even low cost is absurd and an insult.