Hugo de Savary's – living with learning disabilities.

After a relaxing Christmas break we’ve already had a great start to 2012.  This week sees the launch of a new website and blog www.createdbyparents.com that my parents have set up to support other parents of children with learning disabilities.  My folks felt that even with the ever-expanding amount of information available on the internet, finding information and advice specific to the transition from Children’s Services to Adult Services for people with complex needs was just as difficult as when they went through it with Laura all those years ago.

This is a particularly hard time for parents, children, siblings and friends – they have to make decisions that can impact the whole family and potentially change their way of life that they have been used to for decades.  As someone turns 18 they become an adult and their rights change dramatically as do their wishes, dreams and goals.  My parents hope to be able to offer advice and guidance and a good dose of hindsight to families going through this.

Thanks in advance for your support and please do pass on the website to anyone else you think might be interested.

Have a great 2012!

Laura came home last week for her first Christmas of the year with my parents, it was great especially as she was on good form and Poppy absolutely loved seeing her. Although it would be nice for all of us to spend the Christmas break together as a family, like in the ‘good old days’, its testament to the support and care that she receives, that she wants to spend it at the Old Vicarage. I know across all our homes that those who choose to stay, have a very special and unique Christmas, although this is not always easy to accept, especially if you’re my mother!

The learning disability sector is going through massive changes due to the cuts and I’m aware that it has been several months since my last post. My lame excuse is 2 very young children, sleep deprivation and it’s being very much more about surviving rather than living.

As possibly mentioned in an earlier post, my good friend Thom a veteran father with 2 children told me that the second baby is at least ten times as hard on the parents as the first. I can confirm that in our little experience this certainly has been the case.

Read the rest of this entry »

A couple of weeks ago I caught the tail end of an excellent program on Radio 4 which I’ve been meaning to share on here but caught it again last Monday quite by chance. Julie Fernandez who played Brenda the wheelchair user in ‘The Office’, is in real life an advocate for disability rights.

The programme  Caring too Much, explores the complex relationship between disabled child and parent carer. It is certainly thought provoking and emotive and is a must for anyone facing these issues in the near future.
To hear it, click on the link and fast forward past the news:

http://www.bbc.co.uk/programmes/b0138vgk

What a relief to see that Winterbourne View, the hospital featured in the Panorama investigation is closing today.  There is plenty of discussion about whether these sort of private hospitals are appropriate in today’s society. Leading figures in Learning Disabilities have lent their names in a petition to the prime minister to end these placements – as the “model is wrong and does not work”. David Brindle of the Guardian has written a piece which is both informative and constructive.

http://www.guardian.co.uk/society/joepublic/2011/jun/22/private-hospitals-winterbourne-view-learning-disabilities-should-close

We have a new addition to the family. Zara was born only 3 weeks ago (5lb) yet it already feels like months have gone by. We’re all absolutely delighted, especially Poppy.

Fortunately Zara’s putting on good weight and the general sleep deprivation has yet to hit the massive lows, all the same exhausting –  less for me and more so for Kirsten!

We’ll be planning to go up to Lincolnshire soon to see Laura and introduce her to her new niece.

You and Yours on Radio 4, hosted by Julian Worricker broadcast an informative show today for those with loved ones with learning disabilities such as autism, and goes through the various models of care available to those in later life. The BBC must be commended for their actions over the last few weeks with regards to this whole area, but ought to make a link available on BBC iplayer, so as to be able to listen to this again.

For those who may have missed the programme:

http://www.bbc.co.uk/iplayer/episode/b011v1bn/You_and_Yours_14_06_2011/

Following my 2 previous posts on Southerncross and the Panorama expose, I did a  follow up piece that appeared in this weekend’s Sunday Times main section, describing the lengths to which HFHC is approaching care. Massive thanks go out to everyone who had their input on this. This was the full version before the final edit:

Thirty-two years ago, my sister Laura was born; soon afterwards, she was diagnosed with a complex learning disability. My parents were told: “She might live, she might not, but by the way, good luck.” At each stage of her life we have tried to get the best for Laura, but when it came to caring for her in adult life, the options available didn’t measure up to what we believed she deserved. So we created Home from Home Care, now a small group of residential care homes providing care for some 40 people from over 21 local authorities with epilepsy, autism, cerebral palsy and a range of other special needs. Read the rest of this entry »

Joe Casey the Panorama journalist has to be commended for putting himself through the ordeal of witnessing these dreadful actions and for keeping his cool to record the damning evidence to charge these monsters.

I felt absolutely sick watching this footage and was left having nightmares remembering what happened to my sister before she came to HFHC at her previous placement, when she was dragged by a support worker down the corridor by her hair. What was shown last night was care from a bygone age where, despite plenty of money available (over £3500 a week/placement) and modern premises, systematic failure still occurred. This illustrates that you certainly can’t judge a leopard by its spots.

Structured home activities seemed to be in-existent, boredom rife, abuse and torture plentiful, and management controls lacking robustness and solely in place to pay lip service.  This raises wider questions about the company’s recruitment, training and quality assurance procedures. These staff should not have slipped through the recruitment process, and if they had, then they certainly should have been picked out during their training if they weren’t displaying the right values and ethos. Failing these milestones at the very least, the quality assurance aspect of the organisation should have been on top of this, especially in light of the conviction of a support worker for violent conduct towards a service user from the same home a couple months prior to the Panorama investigation. What was demonstrated was a culture certainly not fit for purpose.

All the stakeholders involved at Winterbourne View from the owners, senior managers and the regulatory bodies should be ashamed of what has happened and should take a very close look at whether they should be working in this sector. This is a sector that requires of its individuals the utmost integrity, due to the trust placed upon them by families and the wider society. Unfortunately, in this case, it appears that these stakeholders failed to meet the most fundamental needs of these vulnerable adults, notably to feel safe and secure.

For those who missed this: http://www.bbc.co.uk/programmes/b011pwt6#synopsis

Here is a my tuppence worth blog post on Southern  Cross which has been hitting the financial pages because of the financial crisis. It is also starting to creep on to the main pages due to its sheer size as it is the largest provider in the sector and carries some impressive stats… In the UK it has over 750 homes, 38,000 beds, 31,000 residents and over 40,000 employees,predominantly it specialise in eldercare but also learning disabilities.

Why then, you might ask, is this company hitting the news for all the wrong reasons? Read the rest of this entry »