Hugo de Savary's – living with learning disabilities.

Archive for the ‘LD Resources’ Category

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!

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

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 »

The humble HFHC brochure designed back in the days before our first home  opened in Oct 2004 (the Old Hall) has finally undergone a major facelift. Much work has been put in by the team to create a new look with revised content, that explicitly sets out the services that HFHC offers.

It’s been an astonishing process, as it has brought to the forefront to all of us how much HFHC has evolved over the last 6 years, becoming a specialist provider based in Lincolnshire that now supports individuals from over 21 local authorities nationwide – and as a family we are immensely proud to be associated with it.  We recognise that in the face of the severe cuts that the Health and Social Care sector is being subjected to, we must embrace this changing paradigm. This change through shrinking budgets doesn’t have to be to the detriment of the people that we support. We really believe that we can continue to create better outcomes through our creative and innovative approach which should safeguard the continuation of providing higher levels of service and excellence for the individuals who use our service.

Check out the brochure here!

First blog post of 2011 and I find myself writing it in North Wales…in the midst of economic gloom, government cuts and the vague talk of snow on the horizon, and again we find ourselves on the road speaking at schools and colleges.

The structured environment that these specialist schools and colleges have provided over the last 15 years to their pupils, has also for parents brought about structure and a temporary sense of normality and security to the tough grind of raising a child with a learning disability. In most cases, parents have a niggling uncomfortable feeling, growing like a nasty tumour as the years go by, about what happens when school ends and the safety net has disappeared (see post March 20th, 2010). This year I will meet hundreds of parents in similar predicaments and generally the same chain of events happens.

Mothers hover around our stand, reading the brief literature on the boards, whilst plucking up the courage to find out a bit more…it’s etched on their faces that this experience of having to go through this decision process on their child’s future, is uncomfortable and possibly the most harrowing to date. Read the rest of this entry »

Now a decade into the 21^st Century and technological developments have raced ahead, helping to remove some of the barriers and challenges to delivering care. Most families with children have used the humble baby monitor but dig deeper and there is a whole host of technological solutions that can change the lives of both carers and vulnerable individuals which can provide continuous, automatic and remote monitoring over time such as Telecare, which helps manage the risks associated with independent living.

Telecare it has to be said, can provide some magical life changing solutions to debilitating problems that in the past would have been extremely difficult to overcome and costly to manage. Due to these advantages, Telecare has become prevalent in many aspects of healthcare. Within the eldercare sector, it is used to allow the elderly who start to display vulnerabilities to stay longer in their own homes. Within Learning Disabilities it is widely used within Supported Living and in an organisation like HFHC that delivers specialist care, it also has its place especially in our mews properties setup for those who wish to sample greater independence within a structured environment.

With serious spending cuts taking place and more on the horizon, Telecare is seen as a major solution due to the associated cost benefits – but just like the arguments for CCTV as a substitute for fewer policemen on the streets, the camera may record the criminal act being committed, but there are no assurances that it brings the criminal act to an end.

Unfortunately the same must apply to Telecare, so that the vulnerable aren’t put at risk due to an overreliance on these monitoring solutions. It must be used to support the delivery of care, but in no way must it be seen as a viable substitute to people performing the care function.

Further to my post of March 20th, I’ve been asked what should be the next step if the residential option is considered the favoured choice.

Here are a few brief pointers to consider…

-Look at as many places as possible for your child

-Start the process early, it can take as long as a year to secure a placement

-Don’t be put off by Local Authorities saying they won’t fund out of county placements

-Describe your child on their most challenging day.  Even though this may not be the case 100% of the time, the assessment must be based on real needs

-Ask questions from the care providers, for example, what training or development is available for your child, what typical day will your child have, how can they make their space into a real home.

A month ago when at a wedding, I met a medic who asked me what line of work I was in. In response I gave a very brief background of HFHC, that it catered for people with LD without mentioning my link to it. What happened next took me completely by surprise; the medic in trying to be humorous used what I can only describe as the crassest language imaginable to describe the people supported within the sector, and then proceeded to asked me how I found myself involved in it. Shocked, but not one to preach, I calmly answered his question whilst ignoring his inappropriate language. After a couple of seconds that felt more like minutes, the medic’s face went bright red and an apology was spluttered.

In response I’d like to say that I told him where to go, instead I told him not to worry as he wasn’t to know. Should I have made an excuse? In most circumstances I’d still respond in the same way, especially as I’m not always the most PC amongst friends and believe that you don’t dish it out if you can’t take it – but to strangers I’m on best behaviour. Naturally you would expect most people to take this approach, especially a doctor who should have known better when talking about such a sensitive subject.

Anyway, it is not my aim to tarnish the whole medical profession with the same brush as the majority are decent individuals. However, there are still cases of people with LD being diagnosed and  treated without sensitivity or dignity, which is problematic right across the country. So when the Royal College of Nursing creates some new guidance in this area, it’s refreshing – hopefully leading to a greater awareness.