Saturday, 19 January 2013

A Holiday For Families Who Have a Child With Mobility Difficulties Or Complex Needs

Latitude is a residential retreat, run by Children Worldwide.

It is a pilot event that we hope will grow into more specialist residential retreats in the future.

Latitude Means: freedom, space, liberty, free rein, room to manoeuvre, elbow room, wiggle room, freedom of action.

This is what we want to provide.

19th January 2013 Update

I will start by saying that this venture is still going ahead! But we need to explain our journey.

We had almost filled this camp, but with a combination of deteriorating health, the weather, and one of the children passing away our numbers dropped.

We still had one firm booking and the possibility of a second.

We had to seek God in what we should do. He answered in various ways, including a gift that would almost cover the short fall. Along with our trustees, we have decided to go ahead - it's worth it!

A small group of our members will be researching the possibility of a another more specialist holiday retreat in 2014 at a more central location - We will carry more info on this as and when when we have definite plans in place. We also hope to carry on with this one at Dalesdown too, and will be booking another date for next year.

But for now - here is what we are doing with the event in February.

We now have two families definitely booked in. We would love more.
We have appropriate staff and we have funding.

We have redefined who can come: Any family who have a child with a physical disability who would benefit from this style of holiday/retreat. This could be complex needs, it could be any form of mobility difficulty.

The idea is to pamper, to give parents a chance to talk to other parents, to give the children and their siblings a chance to meet with others. To rest, to have fun - and just 'be'.

Our payment policy is now either "Pay what you can afford" or, asking churches to sponsor families by paying what they can afford. If this is just for food - then fine..... we just want families to come!

What Can You Do?

If you are the parent of a child who fits these criteria - please book, for your whole family. Even if you can't afford it - still book, we have funding and we can find a way around the money! If a weekend is too much and you live locally - just book in for a day!
If your child's health is up and down and it's difficult to commit - sign up, explain and then decide on the day - we don't mind (If we need to do an extra trip to the shops for food - it's not a problem!)

Email and ask questions if you need to (Address on the poster above)

This weekend is for you - tell us how you need us to help you.

If you are a kids/youth leader or a church leader - refer families to us.

If you don't have some one who is able to come, but you are in touch with families who fit these criteria, come up one day to see what we're doing and why and find out what you can do as a leader. Just let us know you are coming and when.

This is a huge vision - and a long held one.

Kay Morgan-Gurr
General Director, Children Worldwide

Monday, 14 January 2013

Euthanasia for Children

Last December, history was made in Brussels.

Twin brothers opted to be euthanized together.

The two men, 45, from the Antwerp region were both born deaf and sought euthanasia after finding that they would also soon go blind.

It’s not just the fact that they were twins. The Telegraph said that “The case is unusual because neither of the men was terminally ill nor suffering physical pain.”

The paper then went on to report that  “Just days after the twins were killed by doctors, Belgium's ruling Socialists tabled a new legal amendment that will allow the euthanasia of children and Alzheimer's sufferers.” (You can read the full article here)

The rules in Brussels currently state that euthanasia can go ahead if “the person wishing to end their life is able to make their wishes clear and a doctor judges that they are suffering unbearable pain”.

After this news, there will be many Christians reaching for their pens to write to their MEPs. That’s good. But can I put something else to you.

If we as Christians are going to complain and attempt to make euthanasia illegal - especially when it comes to children with disabilities, we also need to look at helping to provide a viable alternative - or at least try to understand why people find this to be the only alternative to living with illness and pain.

These Issues Are Not Always Cut And Dried

Look at this from the point of view of a young person with disabilities. 

This is what they often see ahead of them:
  • They see adults with disabilities having all financial help withdrawn because of cuts in disability allowances feeling that the only way out is suicide.
  • They see older friends struggling with inadequate provision of care, where the carer due to come and help them doesn’t even turn up, or if they do turn up, barely having time to help get them up. 
  • They see friends who have opted for supported living accommodation being abused or not adequately cared for.
  • Some can’t see themselves having an amazing future, getting married or having kids of their own. 
  • Some can’t see themselves getting jobs - especially since much of the support that used to be supplied to help them in the work place has been removed in this latest round of cuts.
  • They read comments from high profile people making comments about “aborting babies with defects”.
  • If they know they are going to need care into adulthood, the prospects can look bleak. They don’t see that for some it works out - because for the majority it doesn’t.

All of this can compound the feeling that they are a drain on society and have no right to be alive.

The Natural Next Step?

Can you see why they might take up the option of euthanasia? Surely it's the next logical step?

In health care, children are already allowed to make informed choices about their own care - and that is good. Why is it so unbelievable that the natural next step would be opting for euthanasia?

The Reality

Let’s look at it from another angle. 

For some babies who are born with such severe issues that they cannot live for many weeks without invasive care, and then in considerable pain, it is not unusual for only palliative care to be given. 

This decision is reached along side parents and isn’t the default position on care. When is it decided to treat them, the baby only usually lives a matter of weeks longer and often in a lot of discomfort. I have been a nurse caring for babies in both situations and both are agony for the parents.

If you want to take your campaigning to the extreme - you have to consider these situations too. What support can we give in both cases?

As a nurse I looked after a youngster from birth to death. Just over a year. Her issues were severe and her parents decided they couldn’t cope and put her up for adoption. She never got out of hospital. She was assigned foster parents, but fostering a child who is permanently in hospital never works.
Her life was all about keeping her alive at all costs, even though it was agony for her. Eventually - after much talk, it was decided to give only basic care (Nutrition and cuddles). Her first smile was in my arms as she passed peacefully away, free of needles and uncomfortable plastic oxygen head boxes. Was that wrong? If you think it was - please go and hold a child in obvious pain 24/7 because we insist on keeping them alive….just because we can. Can you, as a Christian provide the extra support needed if this course of action wasn't taken?

I am against euthanasia, but if if you are going to campaign on the right to life….. We need to consider these things too. 

Campaign by all means, but be careful. 

Consider all the options and remember - we also need to provide an alternative. Our churches need to be up to the task of helping practically and providing the much needed pastoral support too.

Friday, 4 January 2013

You probably Won't Read This Because It's About Disability.

I'm sorry for the tongue in cheek title - I did name it that as a joke, but as with many jokes, there is just a grain of truth in it.

I’ve come to the conclusion that when churches are thinking about disability and additional needs, we need a totally different way of thinking. Actually - some churches need to start to think about this as there’s no thinking to change!

How Does Your Church View Disability?

Is it part of the health and safety policy (How to evacuate the premises in the event of a fire) or part of the logistics policy of the church (Where do we put wheelchairs and is the loop system working)?

Is it viewed with some fear or maybe some belligerence (We can’t be expected to do everything when we don’t have any disabled people)?

Or, is it viewed with a different mindset? 
Is your church’s policy on disability placed firmly in the same place as caring for any other person in your church? Are they included in your pastoral thinking? Do you think of them when writing your evangelism policies? When you are training and helping people to find where their giftings are - do you include people with disabilities (including preaching, teaching and leading worship)?

We Need to Be Missional in Our Thinking. 

Rather than thinking “what do we do with the disabled people? Where do we put them, how do we make them safe and stop them complaining”,  we need to change our mindset so we see the person before the disability.

We need to stop treating them as a different people group. And to start seeing the need to facilitate faith and worship for all in our communities. We need to think differently for all those we are reaching out to.

Many of our churches are willing to think differently in the way they approach church and worship. We have seen an emergence of cafe church, messy church, seeker friendly churches etc, but sadly, there appears to be little appetite for making our services accessible at every level, for all.

Those who have disabilities are part of our communities. Yes, some may need to use a wheel chair, need large print or braille, need a signer - but first and foremost, they are people. If we start from seeing those with disabilities as people rather than a health and safety issue, and make them our friends, we will see much more easily how to facilitate them in our communities.

In caring for our church communities we think nothing of making meals for someone who has just had a baby, doing the ironing for some one who has had an operation, so why is caring for someone with a disability, and their family, such a big deal? Is it because it is a long term conscious decision rather than a short term emergency plan?

We Need to be a Welcoming Church 

The disability discrimination act requires us to be pre-emptive in our provision within services and church activities - on top of providing access to the building. I think this is a good thing - and a gospel thing to do. We want to be welcoming to any new person coming into our churches and that’s great! But how welcoming is it to come into a church and have to use the back door to get in? (Using the back door isn’t the issue - it’s the lack of welcome at the back door) To not be able to sing because you can’t see the words, not not be able to know what’s going on because the loop isn’t working….. The list goes on.

As a Christian who is disabled I have to put up with a lot. I rarely complain, but occasionally I will comment for the purpose of training for others. Sometimes I can see that things are done a certain way because there is a logistical problem, and for the greater majority it is the best way….. I am not the centre of the universe, it doesn’t have to be changed just for me. You will find most people with disabilities think the same way.
What I do comment on are thoughtless mistakes. They seem sensible to the person putting them in place, but they haven’t had cause to think it through from a disability point of view.

At the risk of embarrassing male readers, here’s one I and my disabled female friends often come up against:

We have to use the accessible toilet. When you look for the bin for sanitary items you find a note that says “The bin for sanitary items is in the main ladies toilets in the end cubicle”. Now, just stop and think that through a moment…. we have to use the accessible toilet because…… we can’t get into the main toilets!

I’ll close with that thought, but leave you with a challenge. How about looking around your church for issues just like this? How about sitting through a service looking at it from the perspective of different disabilities. Don’t just leave it at wheelchair users and those who are blind or deaf, think it through for those who are elderly and unwell, those who have learning difficulties, those who are autistic. Think about your children's work and your youth work too - there are many, many children and youth out there who have additional needs and disabilities. 

When it comes to those who have additional needs and disabilities  and are outside our church communities - it is a virtually unreached mission field. What are we going to do about it? How missional are we in our approach to disability?

How can your church be more welcoming to people (Adults and Children) who have disabilities and additional needs?

You can contact “Churches for All” for more advice. Just ask and I’ll put you in touch :o)