My ILF……My Life
This started off as a news story about a local woman fighting against the closure of the ILF, but It has turned into a short life story as I want you to know this woman and why she is fighting so hard, so please forgive the length of it and read to the end.
Marta Hancock isn’t a stranger to fighting for her rights; she’s been doing it all her life. Marta; originally from Bath, was an active child and wasn’t a stranger to scrapped knees and bloody elbows, but her mother noticed she was falling a lot more than other children of her age. As most mothers would do, Mrs Hancock took her child to her local GP only to be dismissed with ‘you have a clumsy child’. This didn’t deter Mrs Hancock and over the next 6 years she visited the GP regularly insisting there was something wrong; finally the school doctor took her seriously and arranged for tests at Bristol Hospital. Marta spent several weeks in the hospital being passed from specialist to specialist, and was finally diagnosed in 1979 at the age of 11 with Friedreichs Ataxia, Marta was no longer the clumsy child, she was the disabled child.
Friedreichs Ataxia is a rare inherited disease that causes nervous system damage and impaired muscle coordination resulting in awkward, unsteady movements and impaired sensory functions; with the majority of people finally relying upon motorised wheelchairs and aids to get around.
Mrs Hancock was a busy mother of 5 children and social services finally agreed to give her 2 hours of home help a week so she could spend time with the children rather than concentrating all her efforts on Marta and housework. This was Marta’s first experience of social care and she would see a whole lot more of it in the coming years.
When Marta turned 16 she convinced her parents to allow her to go to a residential college in Coventry where she could continue her studies. Marta wasn’t scared or worried, she had done her research and knew the college had all the facilities and support she needed as a disabled person.
After spending 4 years at the college and coming out with good grades, Marta didn’t want to go home to Bath so applied to Coventry University to study Computer Science, this involved a sandwich year (2 years in university, one year in industry and another back at uni). Going to uni was a wakeup call for Marta as she didn’t have family or residential support; she was on her own and had to deal with it. Which of course Marta did, she used her care component of her disability living allowance to hire a fellow student to tidy her room and do her laundry (a massive help when the laundry room was down several flights of stairs with no lift). This was Marta’s first experience of true independence. “Going to Uni was a huge step for me, I knew my condition was going to deteriorate over the years and moving so far away from family meant I could not rely on them if needed, but I was still reasonably mobile at that time and I figured if I didn’t do it now, I never would”.
The sandwich year gave Marta the opportunity to again dip her toe in the water with another move, this time to Derby where she did her years placement with British Rail. Housing was an issue and Marta had to spend her year living at the YMCA with only the support of her then boyfriend. By this time, Marta was using her wheelchair on a fulltime basis but was managing to live her life reasonably independently.
After going back to Coventry to finish her studies Marta left Uni with a BSC in Computer Science, returned to the YMCA in Derby and immediately started looking for full time work. After several months of hounding British Rail, she was tipped off to a position by a friend in human resources who knew they had to increase the number of disabled members of staff; of course Marta took full advantage of this information and applied immediately. Marta likes to think she got the job fully on her own merits, but secretly understands at this one point in her life, being disabled may have given her the advantage.
Marta spent 7 years with British Rail, but as her impairment progressed Marta finally left in 1999. “It was upsetting having to leave a job I loved, but my coordination was getting worse and I was finding it harder each day” “Access to Work had only started in 1994 and didn’t support people like they do now, they supplied me with a printer I could put on my desk so I didn’t have to get up as much. If I had a job today, I would be supplied with funding for a PA and accessible equipment, but it was different then”.
In 1997 after years of fighting for accessible accommodation Marta was given the opportunity to move into a flat with Walbrook Housing, after spending 5 years at the YMCA, it didn’t take much convincing. Of course she had to fight to get adaptions and some support but managed it to a degree in the end. 5 hours of home help a week to assist with dressing, better than nothing and whilst she was still working this was all she needed in the mornings, extra help in the evening would have been appreciated, but Marta managed.
By the year 2000 Marta’s health had deteriorated rapidly and she was now using an electric wheelchair; transferring using sliding boards and could only weight bare for a few seconds at a time. She had been fighting for more help from social services for some time and finally there was light at the end of the tunnel. She had met a couple of people at a YMCA function who convinced her to join a group called Muscle Power; a group of disabled people that supported local people with information on independent living, equipment and benefits. This is where Marta found out about Direct Payments and ILF; funding that was going to change her life forever.
“I was very restricted with the support from home helps as they didn’t support me outside of my home so I had to rely on friends if I wanted to go out. They took care of my personal needs, but that was it; socially and mentally I was stuck in a bubble”. “I remember hearing about this new funding and thought it was too good to be true; I hated having the home helps, I didn’t have any choice of who was coming into my home and it often wasn’t the same person on a daily basis. This new funding would allow me to handpick a PA and I would finally get some consistency”.
Marta had the assessment for Direct Payments by a social worker and was then referred to ILF for a separate assessment because if her higher needs. “I was shocked at the amount of hours they offered me, my home help hours had gone up slightly over the last couple of years but nothing like the hours I was being offered by social services and ILF; 72 hours a week in total”.
The funding had a massive impact on Marta’s life, she had gone from getting the very basic of care and being very isolated to more support than she knew what to do with. “It was hard to deal with at first, I had to find good reliable staff who not only had experience, but who I got on with, I was going to be spending a lot of time with them”. The PA’s would support Marta with all her usual care needs, getting up in the mornings, going to bed, medication and personal care; but the extra hours also meant Marta could get out and socialise and more importantly volunteer and make a difference.
Even though Marta’s working days were behind her, she still wanted to contribute to her local community and soon became a volunteer for Disability Direct, supporting disabled people with enquiries and advocacy. It wasn’t long before she was asked to join the management committee and soon after became their chair person.
“Looking back at the early years of Direct payments and ILF, I realise I had been given far more support than I needed. The government and Derby City Council were pushing this new all singing all dancing funding and they were practically throwing money at people. It allowed me to do so much; I joined several steering groups and boards and advised professionals on equality and access and supported other disabled people with advocacy and information. It was a full time job, although unpaid”. “I suppose the downside with all the support was I gave up on simple tasks that I would usually have done myself like cooking; it would take me twice as long as anyone else but I could manage it”. “With all the work I was doing, it was easier for me to have a PA prepare meals than for me to struggle for several hours”. “Maybe this is my only regret, I could have been stronger myself, rather than put all my efforts into helping other people”.
Marta’s condition has deteriorated considerably over the last 15 years and her funding hasn’t changed. “There came a time when the funding I was getting was perfect for my needs, but as the years have gone by, my needs have changed and the funding has stayed the same and that was only due to me fighting so hard to keep it as they have tried to reduce it many times”
Marta no longer volunteers and has reduced the groups she attends to a minimum; she now has a heart condition and diabetes bought on by the Friedreichs Ataxia, she fatigues easily and can no longer weight bare, she needs to be propped up whilst seated, her grip is very weak and she relies on hoists for transferring. The socialising and volunteering she used to do with the 72 hours funding now seems like a distant memory; these hours are nearly all used for personal care, exercise, cooking, cleaning, monitoring and medicating. This funding means Marta can survive.
Marta has made a contribution to society, she has studied, she has worked, she has paid taxes, she has volunteered, she has advised councils and national organisations……..she has made a difference.
Now comes the kicker………The government are dissolving the ILF this year and responsibility for the funding is being passed onto local authorities. Disabled people from all over the country have been fighting to stop this and will continue until the end. People fear that they will have their funding cut and will ultimately lose their independence. The ILF has made such a huge difference to so many lives, supporting those people with higher needs when local authorities didn’t have the funding to do so; losing it is undoubtedly going to have a major effect on society.
I don’t know what is going to happen; I would like to have faith in my local authority as they have given millions of pounds to voluntary sector organisations over the years in order for people to be supported by their peers. Admittedly this has been cut considerably and is already having a negative effect on people, but one would like to think that as they are being given the funds originally intended for the ILF they will continue to honour the assessments and fund those people with higher needs.
If you want to join Marta and many others in their fight against the ILF closure you can join her group on Facebook at https://www.facebook.com/groups/841754965870384/ If you are not a FB fan, please contact me and I will pass your details on to Marta.