I first became friends with Lori about 3 years ago after reading her book; ‘It’s One Of Them! Living with Spinal Muscular Atrophy‘ after it came up on a Google search around the time I was eagerly searching for other Mum’s with disabilities to connect with.
Lori Howard 48, lives in Coventry, England with husband Mike, 22yr old daughter Kiah, 2 cats and a westie named Alfie. Living with the Neuromuscular disorder Spinal Muscular Atrophy type 2 has never stopped her from living a very full and rich life. Much of her adventures and antics Lori got upto over the years, you can read in her book! Shameless plug for you babe 😉 Where she shares with us her lifes ups and downs growing up as a child with a disability – everything from major life prolonging surgeries, having a brother who sadly passed away from the same condition to the amazing experiences she retells with laughter of her time in a Hereward College to becoming a parent.
Where many would of crumbled, Lori has remained focused on life’s incredible journey, which she’s always got the most out of because up until now she’s had adequate support.
Just like me, Lori has a team of Personal Assistants who help her live the way she wants to, independently and with dignity. Recruiting, interviewing and managing her own staff. Some of which she’s developed such good relationships with, they’ve been with her over 12 years!
SMA is a progressive life-limiting genetic condition where the muscles don’t receive strong enough signals from the spinal cord (thanks to a missing protein called SMN1). Resulting in overall muscle weakness as muscles responsible for movement, swallowing and breathing atrophy over time. There are 4 main types of SMA, Lori has type 2 which in her case means she’s only ever stood as a toddler with the aid of leg callipers but has never been able to walk, needs full assistance toileting, dressing, feeding, transferring using a hoist and uses Non-invasive ventilation at night to compensate for weak respiratory muscles. Despite how grim this may sound to an outsider, people with SMA are able to lead full, active lives with the help of assistive technology and an adequate care package that focuses on keeping the individuals dignity in tack and independent in their own version of ‘normal’ (whatever that is!)
In February 2017 Lori received a letter in the post saying her individual care budget was due it’s annual review. Since the abolishment of the ILF (Independent Living Fund) in 2015. 18,000 of Britain’s most severely disabled individuals funding for their 24hr care packages were handed over to Local Authorities (LA’s), as our Tory led government tried to make cuts anywhere they could to pay of the countries Billions of debt. Even if it meant cutting care to the most vulnerable of people. Initially it was promised that LA’s would receive adequate funding to now support these individuals, making it sound like the budget normally allocated to the ILF was merely being transfered. As feared by disability activists and rights campaigners that wasn’t the case! Although LA’s are given x amount of funding for people like Lori who need and have been in receipt of 24hr care funding for decades, it is up to each individual local authority on how much to allocate and therefore it becomes a postcode lottery. So naturally when the ILF was no more, panic struck anybody receiving an individual budget when it came to their annual review, it wasn’t just those who received 24hr funding but any amount of hours. Those with 24hr care packages notibly being the hardest sanctioned.
They sent out a Social Worker I’d never met before. My care, my Life was literally in his hands. His understanding of my condition, care needs and the circumstances were about to dictated my quality of life. Yet this Social Worker with such power over my existence, kept referring to my condition as M.S. I knew then that assessment was going to be detrimental ~ Says Lori
It was to no surprise that 2 weeks later Lori was told over the phone that the LA had decided to drastically cut her care. Although she knew she had the right to appeal their decision, understandably she was left shaken at the prospect of not having her most basic human needs met.
As part of the appeal procedures Lori was re-assessed, this time by an Occupational Therapist. This OT came out to observe her entire care routine, watching and noting down the tiny yet vastly important details of what exactly her care routines entailed, how long each task took and if Lori was actually as disabled as she claimed to need care for. Thankfully this assessor was in complete agreence that Lori does indeed require 24hr help from her team of Personal Assistants, just as she has done since early childhood.
Upon the outcome of this re-assessment the Social Worker tried to get a scheme known as Continuing Healthcare (CHC) to pay for Lori’s night care but due to repositioning, toileting amongst other things being not classed as medically necessary – she was told that she was now not entitled to night care, no domestic assistance and would now only receive 4 scheduled support visits per day and somehow had to fit ALL her needs into those 4 short visits.
After this damning report that would now be her existence, Lori tried to explained to no end that there was no way that all her needs could be met in those 4 visits and she was at risk of bed sores, having accidents and her home becoming a health hazard if this new support package was forced upon her. Their suggestions to get around these issues understandably pushing the once out-going, bubbly and independent Mum into a deep depression.
Their solutions were to offer Lori a hospital bed, that would have to be placed in another room in the house, forcing her out of her marital bed and adult nappies to wear throughout the night (and day if she felt she couldn’t make it between visits).
It was at that point I confided in my parents that I didn’t want to live like that. For them to hear that from me, when they’ve already lost my brother to SMA was soul destroying for them ~ Lori bravely explained
Although she hasn’t been offered anti-depressants (as the cause is obvious!) Lori may have to circum to asking for something in the near future, aswell as councilling to help her cope emotionally with being inhumanely ripped away from her husband Mike and forced the indignity of wearing adult nappies, when she isn’t actually incontinent in the light of the possibility of not winning her appeal.
Lori hasn’t lost her fight though! She’s seeking legal action against Coventry Adult Social Services and has already had several articles covered in various magazines, newspapers and even on BBC News.
Currently they are wanting to put Lori through yet another OT assessment, combined with sending out a District Nurse to evaluate her night care needs. Rightly so, Lori has refused these further assessments as now with legal backing, she’s got the right people fighting her corner with parts of the Care Act, Coventry Adult Social Services may well be in breach of.
Articles + News Story’s Featuring Lorraine Howard –
“I Could Be Taken From My Home”: Why disabled people once again fear being ‘warehoused’
You can purchase 👉‘It’s One Of Them! Living with Spinal Muscular Atrophy’👈 here