Posts Tagged "blogging"

Welcome nursery people!

Posted on Jun 12, 2015 | 0 comments

Welcome nursery people!

Yesterday, I gave a speech at the National Day Nursery Association’s national conference. And yes, when I was dropped off by the taxi in front of this sports arena that I’m assuming seats tens of thousands, I did think, “What the hell am I doing here?” Thankfully, I wasn’t centre-pitch delivering my speech to a rugby ground of thousands, but a sedate conference room of hundreds. For those of you who saw me ramble through my speech and came here to read more about our trials and successes with nursery, I bring you this easily accessible list of previous posts that may interest you: Did they allow your special needs kiddie into nursery? Searching for a nursery – links to all the posts documenting our struggle to get May into nursery We work! (We do if you’d let us) – about how difficult it is for mothers of disabled children to return to work It was an honour to speak to the industry. If we are going to get more disabled children in nurseries, than working directly with nurseries to enable them to provide that service is key. It isn’t easy for them, especially when the government is changing the goal posts all the time and, importantly, the funding. But, it is very possible. Sometimes as easy as applying for charity funding for a ramp so that a wheelchair can access the building. It could be that simple and only needs a bit of imagination and heart, something I know childcare providers already provide in abundance. Finally… direct from parents’ mouths (or keyboards) from my Mama Lewis Facebook page, some positive stories about how nurseries worked with their children: Our nursery were amazing. They really took to my son and all his many disabilities. They were so positive about doing his therapies with him and also allowing him to be a little boy. Messy play being outside, water play and joining in with the other children. The only issue was funding… I loved the nursery staff and was very sad when it came time to go to school! Nursery can be so positive for our children and I think people need to remember they aren’t just tricky to look after/ manage but actually give a lot back too. Just like any other child.   We had a great experience, staff were keen to learn, were diligent about incorporating the necessary exercises, equipment and play therapy into his day, but kept him integrated as much as possible. We initially had difficulties with seating as local authority refused to supply a seat as he was under school age so apparently unnecessary for him to be at nursery (my mortgage provider would beg to differ!). We ended up funding a seat through a charity and it made a huge difference to his ability to integrate (ie he could now sit with the other children for lunch instead go being stuck in a highchair), plus being properly supported meant he could focus on his hand use etc. The nursery were great with storing & using equipment – at one stage he had 2 walkers! I completely credit the nursery for his starting mainstream school last September – we would never have had the space, time, and energy that he needed, and with anASD diagnosis on top, the structured routine. Being around the other children boosted his social and communication skills too. We weren’t charged any extra but the nursery did get 1-1 funding eventually from the LA. He went from 14 months up to school age, at 14 months couldn’t sit, talk, feed himself etc, by the time he...

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The video that changed everything

Posted on Mar 12, 2015 | 8 comments

The video that changed everything

Last week, ITV filmed May and I in our housing showing the reality of disabled housing. As we filmed, the reality of our lives wasn’t just highlighted in the piece, but starkly apparent to me. Only an hour later – before it even aired – we received our first contact from Lambeth council. I had to carry May up the stairs; we have four flights at various points in the house, inside and out. In the clip below, you can hear me puffing as I heave her up those stairs. They asked me hard questions, emotional questions that cut to the heart of what our lives are like. Not all of it made it in, but it did make one thing clear to me: we need better housing and people like us do as well. So, I’d ask you to take a look at the Leonard Cheshire Disability’s Home Truths report. They were the impetus to all of this happening and I’m grateful that they gave us the opportunity to share our story and change our lives. Because we are prioritised for housing now and it is only a matter of time – and not an impossibility – that something appropriate will come up. Here’s the video:...

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Hello, Lambeth? I didn’t expect this to happen so soon.

Posted on Mar 6, 2015 | 0 comments

Hello, Lambeth? I didn’t expect this to happen so soon.

On Monday, I posted about our housing problems. By Wednesday, we were finally placed in the highest priority band for housing. Now it is Friday. Only five days later and here today, a perfect example of how families like ours are treated. We used to have a wonderful social worker named Beverly. She was a force of nature. My housing issue would never have been an issue. She would have handled it on our behalf. That’s how good social work is meant to work. As an example, Lambeth are meant to pay us “direct payments” towards our care worker twice a month. Over the course of the last two years, Lambeth didn’t pay us. Months later, after much chasing by us and Beverly, they would catch up with their payments, but initially we were not paid. For example: in just the second half of 2014, we were not paid anything in July, August or October of 2014. It wasn’t just us. Other families across Lambeth also experienced this. Every time this happened, we were not informed. I only found out because I checked our bank account – a bank account we can only use for these direct payments, so one we only use once a month to pay our care worker. We’d have to pull money from our own savings – and thank god we had some – to pay our care worker. Because the thing about employees is that they don’t keep working for free. I’m sure many other families like mine across the council lost their care workers over this. It could take weeks or longer to receive the correct payment. And then, the following month it would happen again. This happened many times – even more than the months I listed above – in 2014 and 2013. Here is an excerpt from one of many emails I wrote to Lambeth about this: I have made several requests for a full account of our direct payments for the past year. We were owed money and paid different amounts every month. I still have no idea what we were meant to be paid compared to what we were actually paid. It would be a simple thing to print this out and send it to us, especially given the on-going issues with payments. This is highly irresponsible. We have a severely disabled child who is not independent in any way. Meanwhile, I have been hospitalised with leukaemia for the past month. These payments are essential for our family to survive. Our care worker will quit if you do not sort this out. Beverly was our soldier. She made people account for these funding problems. She helped us like no one else did, when many within Lambeth completely ignored us. Then, she went on long-term sick leave. No one told us. So, all the while these housing and direct payment issues are happening – for several months – I’m calling her and emailing and getting no response. Finally, one day I phone Beverly and someone else in the social service’s team picks up her phone and tells me she is on long-term sick. That’s the only reason I found out. From that point on, only duty social workers answered my calls. And none of them did a single thing to help us. When I wrote in my housing post about literally begging for help, it was one of these duty social workers who ignored me. Then, on February 11, I received a letter from the manager of the team saying that they would be assigning us a new social worker in three weeks without any explanation or addressing any...

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This is not a joke.

Posted on Feb 15, 2015 | 0 comments

This is not a joke.

A photo to illustrate the lunacy we are up against. This family spent two years campaigning for access to their own home. “We weren’t fighting for a massive steel ramp – we just wanted to improve Katie’s quality of life,” her mother said. Mother’s anger after council install ‘slalom’ ramp for disabled daughter in front garden http://t.co/TI0w9kt0f8 pic.twitter.com/IAVRsnfL71 — Telegraph News (@TelegraphNews) February 13, 2014   What’s the craziest thing you know of that a council has done to “help” a disabled...

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We did it! Government changes childcare policy in favour of disabled children

Posted on Feb 9, 2015 | 0 comments

We did it! Government changes childcare policy in favour of disabled children

This just in! Contact a Family, the charity who drew up the report into childcare issues for disabled children and pressed for a Parliamentary inquiry, emailed today with the new draft legislation regarding childcare costs. Families with disabled children will now be allowed to put double the amount aside tax-free as other families. This will mean a gain of £2,000/year towards childcare costs. “Representations were made during consultation that additional support should be provided for disabled children in view of the generally higher childcare costs their parents can face. Similar comments were also made during the Bill’s Commons Committee stage when the Exchequer Secretary to the Treasury made a commitment to consider this matter further. Having considered this, the Government has decided to introduce legislation to increase the maximum amount that parents of disabled children can pay into their childcare accounts, in recognition of the higher childcare costs these families incur. For accounts for disabled children, the maximum payment for a standard three month entitlement period will be doubled to £4,000. This means that a parent with a disabled child will be able to pay up to £16,000 into their childcare account per year and receive top-up payments of up to £4,000.” I’ve written a lot about this. Almost 3/4 of mothers have to give up their jobs or move to part-time work after having a disabled child, according to research by Contact a Family. Furthermore, the research shows that the fees for children who are accepted are on average 8x the cost of other children. Doubling the amount parents can set aside tax-free will definitely help, but it’s only a start. It’s not 8x the cost of fees for other families, nor does it address the costs to nurseries and childminders in additional staffing, training and infrastructure. Still, I’m very pleased. This will definitely help! I’m very proud to have been part of the group of dynamic women who campaigned alongside me: Katherine Kowalski from Orange This Way, Hannah Postgate of Rosy & Bo and Mr Boo’s mum from Premmediations, along with the other parents and MPs Pat Glass and Robert Buckland who chaired the inquiry. That we had cross party support goes a long way in showing how important it is to get women working again and give their disabled children access to early years education. #WeWork. (We do. If you’d let...

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