Unable to apply for Independent Living Fund – Barry and Natassia’s stories

After a long wait the day for the court hearing re Independent Living Fund is now here. Full details about the hearing and vigil can be found here.

There will also be an interview shown on Ch4 news at 7pm March 13th.

Please show your support throughout the afternoon by sharing these details as wide as possible. A few attending will hopefully be tweeting using hashtag  #ILF

I am Barry McDonald, I am 28 years old. I am a wheelchair user. I enjoy watching football and going out to the pub with my friends. I do a lot of volunteering around sports and improving services for Deaf and disabled people. I am ambitious as I have life goals I want to achieve: to be in a long term paid job, to move out on my own and to be in a position where I can be actively involved in doing all I can to improve services provided for disabled people and working towards a world that can one day be fully accessible for all.

I can’t do these things on the level of support I get from my local authority. I receive 45 minutes of social care per day for personal care. I receive nothing for domestic, social or leisure activities because my local authority will only fund support for basic personal care needs.

As a young person the hardest thing I find is not being able to go out and do anything, I can’t take part in the community, in training or work experience because I have no support to travel anywhere. I am also severely limited in chances to go out and socialise.

I am Chair of my local Disabled People’s Organisation but it costs sixty pound in taxis for me to go to a single meeting and when funding is tight that really limits the amount I can do. There are numerous events, meetings and trainings that go on that I can’t get to because there is no funding for travel. I would happily use public transport but I need someone to travel with me because I can only go so far in my manual wheelchair and I need support getting on and off buses and trains.

I have a taxi card which only gives me 8 journeys per month. Going into Bromley from where I live costs me two swipes of my Taxi card for a one way journey. So for one outing with my friends costs me 4 swipes of my taxi card plus my contribution which varies because it is a black cab and runs on a metre. It can cost me between £5 – £2, depending on the time I get the cab. It also means I get stuck places as I have accidentally used up all my taxi card swipes to get to a place and then can’t get home. The 8 journeys means two social outings per month. I also have a mobility car through my DLA. A friend uses that to drive me to football for Arsenal home games but aside from that I don’t have funding for support for anyone to drive me anywhere in it.

My life would be very different if I had been able to apply for the ILF. The ILF was good at leveraging local authorities to increase the care packages they were awarding so I would have got more all round. I would have used the extra support to move out of my family home when I was 21 years old. I would also have built up confidence to travel on public transport, being able to employ a Personal Assistant so I could go out and about. I would have been able to get to the courses and training I wanted to go on to qualify as Level 3 Sports Coach and I could now be working towards paid employment in my chosen profession. I would have support to go to the gym three times a week, improving my health and fitness. I could go on

holiday even. As a result of being able to do all these things it would have boosted my confidence and maybe I would be in a relationship by now.

Natassia and Petrell’s Story

Natassia is a 21year old young woman who lives at home with her parents in South Norwood, Croydon. She wants to live an independent life with choice and control over what she does and who she does it with. Her support package from the local Council is £175 per week. This is not enough to cover the support she needs yet the Council are refusing to raise it, giving her mother the only alternative of sending her to live in residential care.

Natassia has Cerebral Palsy and requires assistance with washing, dressing. She wants to be active and to enjoy social networks and get of the house so she uses her budget to pay to go to a day centre of her choice in South Croydon three days a week. This costs £141 and leaves little left in the budget for meeting her needs for the rest of the week. The Council say if it is too expensive from her budget she should choose to go somewhere else but other day centres in the area are full of older people who Natassia doesn’t relate to and aren’t appropriate. The cost of getting out of the house three times a week then means that there isn’t enough money left in the budget to pay for personal assistants to support Natassia get up, washed and dressed and her parents have to rise at 4.30am to do this. They are happy to do this on the weekend but they find it too much every day of the week.

The Council says that if this is a problem, Natassia should be sent into residential care.

This is despite the fact that residential care would be more expensive than raising the level of the personal budget Natassia receives, costing £225 in rent before any costs for support and personal care.

The family home has been adapted so it is accessible and meets Natassia’s needs. It is where she wants to live.

Had the Independent Living Fund been open Natassia could have applied for support to meet her full range of needs, to receive personal assistance support that allowed her to live with her family while allowing them to live their own lives while still being able to maintain her social networks and to be part of the community.

 

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