MRS HELEN SPALDING – WRITTEN EVIDENCE (ASC0003)
My name is Helen Spalding. I’m a parent carer for my daughter who is 23 yrs old and lives at home with myself and my husband. My daughter was discovered to be differently abled when she was about 6 months old and we knew that it would affect her for the rest of her life – she wasn’t developing normally. When my daughter was 8 years old, after many years of investigations, she received the diagnosis of Kleefstra Syndrome – a rare chromosome deletion disorder. My daughter also has severe learning disabilities, Autism, Hypotonia, Hypermobility, underactive Thyroid, a heart condition which requires regular medication and recently she was diagnosed with Bipolar.
My daughter walked at about 8 years old. She started to talk at about 9 years old. She was dry during the day at about 5 years old but still needed pads for the night until she was about 12 years old.
My daughter went to a Special School, locally, from the age of 3 yrs old until she was 19 yrs old (Sept. 2002 – July 2018). Then she went to a Specialist College in our locality until she was 22 yrs old. Since leaving College (July 2021) she has been in Adult Day Services which, at best, are very limited in their offers and activities. That is, if you can get day service provision – my daughter has 5 day provision but I know that this is NOT easy to come by.
I feel I need to mention the outrageous Down Syndrome Bill which has recently been passed. I’m certain that it wouldn’t stand up to a legal challenge as it’s so obviously discriminatory against every other learning disability. I read this morning that over 1.5 million people in the UK have a learning disability and only 40K of those are people with Down Syndrome. Surely all our precious services should be allocated as they’re needed, not allocated based on a name. People’s needs should surely be addressed whatever their diagnosis. The Down Syndrome Bill is the most blatant form of inequality displayed by a British Government in my lifetime. I’m so shocked that it’s been passed, I really am.
Thank you for inviting me to share my experiences and knowledge of the Adult Social Care system with you today. Hopefully this will help to bring about significant change as it’s desperately needed.
Helen Spalding.
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Social Workers & Social Care employees, support workers, etc., insist our adult children take part in meetings & discussions about them. Whilst this is a great idea, in theory, in practice it's really not that good. My adult daughter lacks capacity which means conversations about assessments & plans are useless as she doesn’t understand what they mean, what they’re about or the consequences.
Add to this, I can ask my daughter something & get one answer from her, then, straight away, I can ask her the same question again & receive a COMPLETEY DIFFERENT answer. We have to ask her the same question, several different times, at different times of the day, on different days & in different locations, in order to gauge her opinion. This makes any meeting about assessments & planning very difficult & often contentious because the professional involved (usually a Social Worker) will take the words of my daughter at the time as being her definitive answer/ opinion.
Of course we can ask my daughter’s opinion but Social Care workers need to be able to balance my daughter’s answers with an understanding of how she functions as well as a good dose of common sense. She will often answer with something completely random, often unrelated, because she has just been talking about it with a friend or watching a programme about it on TV. For example - my daughter has, in the past, expressed to a Social Worker a desire to see her father. For many reasons it’s not safe for her to see her father & for many years I tried to make contact work. However, her father wasn’t co operative, nothing changed, & sadly he remains a toxic, abusive, controlling & manipulative person who upsets my daughter immensely, every time they see each other. (We actually fled the marriage (along with my older son) due to domestic abuse.) So, unfortunately, I had to stop contact. However, in the Social Workers view, my daughter was an adult & had a Human Right to see her father. I explained the situation to our Social Worker but she refused to listen to me. I was investigated by the Safeguarding Team for abusing my daughter’s human rights. Nobody would talk to me about the investigation – apparently they weren’t allowed to. As far as I’m aware the investigation is still ongoing, I’ve no idea. This was about 4 or 5 years ago now.
Social Care don’t understand Mental Capacity Assessments, don’t know how to carry them out & don’t understand what a lack of capacity means. They don’t understand that, whilst my daughter has human rights, she also has a right to be protected from harm: she needs to be safeguarded & also guided & supported towards making healthy choices in her life.
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Social Workers have a lack of understanding of how the system works. I’ve met with many different Social Workers over the years (my daughter is 23 yrs old) as we lose our Social Worker every 6 – 18 months, on average. They have all given me incorrect information or advice, at some point. It's always relating to something different but has always happened. On one occasion I knew the Social Worker was wrong but I was able to correct her. Thankfully she was very gracious & even took notes. Not all Social Workers respond in this way. And I don’t always realise that their advice/ information is wrong until I get further down the line, so to speak.
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The Social Care system doesn’t make sense. When my daughter was 2 years old she was the size of an average 5 year old. My daughter couldn't sit up, wasn't crawling or moving about. We needed a buggy/ pushchair for her but, being the size of a 5 year old, she kept buckling these because she was too big for them: generally pushchairs & buggies aren't built for 5 yr olds. We managed to get a referral to Wheelchair Services. However, they turned us down for a Special Needs Buggy because, they said, my daughter didn't have a diagnosis AND she was under 4 yrs old. Wheelchair Services explained: up to 4 yrs old a family would be expected to provide their child with a buggy. And yet my daughter was already attending a Special School (full time); she had a DLA award; had been given a diagnosis of Global Developmental Delay; was under a Paediatrician at our local hospital & had regular appointments with a Learning Disabilities Nurse, Physiotherapist, Cardiologist, Geneticist & Speech Therapy. About a week or so later our Learning Disabilities Nurse made an unexpected visit. She came to drop off a Special Needs buggy! She smiled & told me that, if anyone asked, I hadn't seen her! She explained that the buggy was "lost in the system" so we may as well make use of it as long as we needed it. How amazing!
I did my own research, found a special needs buggy suitable for my daughter, & the Variety Club of Great Britain agreed to fund it!
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Social Workers don’t understand the hardships we face as unpaid carers or the stress & difficulties of being a parent carer. They don’t understand my daughter & think that a 15 minute, home visit, snap shot of my daughter is enough to say that they know what’s best for us. Which on most occasions has been that we’re “not eligible” for support when we have been completely “eligible”. But nobody could explain that.
Things changed when my daughter turned 18yrs old. My daughter was re assessed by the Adult Team & we were given regular overnight respite. But, what had changed?
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Different Social Workers have different ways of interpreting their rules & guidelines, which means we end up living in a community where one family gets several services & another family (possibly more close to crisis & breaking point) don’t receive any support at all. For example, I spent 5 or 6 years battling to get some support from our Local Authority. During this time a very good friend of ours, who also had a disabled daughter living at home, was awarded a substantial package of support. My friend is very well off, the family have a very healthy income. I was living entirely on benefits at the time. Several times my friend said she couldn’t understand why I couldn’t get any support: she would quite freely say to me that she couldn’t understand how she had got the support that she had – she even went so far as to say that “it’s not like we can’t afford to pay for it ourselves”. My friend says she never even asked for any support but that the Social Worker almost insisted that she needed some.
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When my daughter turned 20yrs old she was still in full time education. I was unemployed & had no savings - I was living completely on benefits & claiming for my daughter, as my child. When my daughter turned 20 this had to change & my daughter had to claim Universal Credit in her own right, in her own name. My daughter was awarded a full UC payment with the Disability Award as well. But we are roughly about £100 per month worse off.
Once a family receive a service from their Local Authority we’re expected to make a Client Contribution to help pay for that service. Our Local Authority do what they call a FAB Assessment to assess how much a client should contribute. My daughter has been assessed as having to pay £383 every four weeks (or it might be monthly, by date, sorry, I can’t quite remember which it is…). That’s £383! But her money hasn’t increased. Our household pot hasn’t increased. And it is a household pot because my daughter lacks the capacity to manage her own money. My daughter doesn’t have a debit card & she doesn’t have an ATM card. I manage her money for her. I could tell my daughter that one pint of milk costs £1000 & she would accept that without question: she wouldn’t think that was odd at all, which makes her very vulnerable, financially.
In total, our benefits have decreased by about £100 per month, & yet my daughter is expected to pay out an extra £383 each month. Simply because she is now receiving a good package of overnight respite & is in Adult Day Services for 5 days per week.
The FAB assessment, though, doesn’t take into consideration what services you might be receiving – only your income. A couple of years ago, the disabled son of a very good friend of ours was assessed as having to pay nearly £400 each month for… 12 (twelve) nights of respite per year… that’s 12 (twelve) nights per year.
She gave up the respite! It wasn’t worth it. My friend & her son, and myself & my daughter, were, financially, in exactly the same situation. Pound for pound.
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There are no options when it comes Social Care support – the only options I’ve ever been offered, & that I’m aware are available from my Local Authority, are overnight respite at a respite centre & Direct Payments.
Following a Carers Assessment a few years ago I was awarded a Direct Payment, for myself, as a carer. I hate it! I’d rather not have it because it’s too much of a headache.
Our Local Authority give me an agreed sum of money, to pay a carer of my choosing, to look after my daughter for an agreed number of hours each week.
In practice this means that not only do I have to find & recruit a suitable carer, check their experience & qualifications, etc., but I also have to provide them with a contract, figure out their holiday pay, sick pay, etc.
I’m an unpaid carer. I also suffer with M.E., myself. My life is already busy, stressful, the amount of admin I have to do in order to manage my daughter’s life is immense, I have to stay on top of her mental & physical health & all of her appointments with her GP, the hospital, dentist, etc., as well as the day to day jobs like packed lunches, dropping off, collecting, taking to clubs & activities, signing her up for clubs, etc., paying her bills… the list goes on. The last thing I want to do is to become an employer. This has been proven because I’ve turned out to be not very good at it! Mercifully, I have a very understanding carer for my daughter who knows us very well.
Recruitment is near to impossible. A number of families I know have been awarded Direct Payments but can’t use them because they can’t find suitable carers to do the work. If the Direct Payment isn’t used then it gets taken away.
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Unpaid Carers are very invisible. I think Social Workers just assume “it’s what you do”. For me, as a parent carer, I’ve always felt that Social Workers look at me & think “well, of course you care for her, she’s your daughter, I care for my daughter.” But they don’t see what ‘caring’ actually involves & all the extra things that I’ve always had to do.
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I’ve often asked myself why Unpaid Carers don’t campaign more for their rights, for their benefits, for better awareness & increased support.
The answer is obvious, to me now: Unpaid Carers don’t have the time! Unpaid Carers use their ‘breaks’ (if they can get any) to sleep or make their own GP, dental, hospital appointments, etc. When they do get a break, most Unpaid Carers aren’t able to spend that time relaxing. They use the time to do their own housework, go to their own appointments, spend time with their other children, caring for other family members.
Getting a ‘break’, doesn’t usually mean getting a break, a rest. It simply means that someone else is doing the caring.
Unpaid carers really are unsung heroes. Particularly during the last 2 years. We’ve all gone above & beyond & lots of us have been traumatised by the situations we’ve found ourselves in. Tired, broken, burnt out, dealing with situations we’ve got NO formal training for.
7 April 2022