Saturday, 27 October 2012

Clocks Go Back Tonight!

Yes, Winter is here! Please don't forget 
to set your clocks back by 1 hour tonight!

Friday, 26 October 2012

Self-Directed Support Bill (Scotland)

The Self Directed Support Bill: 

A Once in a Lifetime Opportunity
The Self-Directed Support Bill is going through its parliamentary stages. Act Now For Autism supports the call by many carer organisations in Scotland asking MSP's to support the amendments being suggested. 
The need to recognise and fully support Scotland’s unpaid carers – who provide some £10 billion of care and support each year – has never been greater.  As our population changes, it makes economic sense to ensure that unpaid carers – who keep families together, who enable those they support to live the best quality of life possible – have greater rights to recognition and support.   

The current proposed provisions will not strengthen support and rights for Scotland’s 650 000 unpaid carers.  

This is a once in a lifetime opportunity to give unpaid carers some real rights and recognition.   

The amendments being proposed will strengthen the Bill.

Suggested Amendements: 

Section 1 - General Principles
The Bill, within its general principles, should fully recognise the key role that carers play in supporting disabled and older people in their own homes and communities.

The principles outlined in guidance for the Community Care and Health (Scotland)
Act 2002 recognise carers as key partners in care. Caring Together: Scotland’s
Carers Strategy 2010 goes further to state that carers should be seen as equal and
expert partners in the provision of care.

There should be a principle laid out in legislation will have greater strength and will ensure that the integral role that carers play is fully recognised and included, where appropriate, in the roll out of self-directed support:

Proposed Amendment:

Carers should be recognised as key partners in the provision of care, and should
have as much involvement as the person and the carer wishes in relation to:

(a) the assessment of the person’s need for support or services and,
(b) the provision of support or services for this person
(c) the provision of support or services to the unpaid carer (under Section 2)2”

In addition, Section 1 (subsection 4) of the Bill could be improved by legislating to ensure that local authorities are instructed to collaborate with any carer when undertaking an assessment and deciding what support to provide to the individual.  By making sure this action is taken from the outset, we can ensure that carers are fully involved. This would enable both the individual and their carer to be able to discuss what care the carer is willing and able to provide and what support the individual wants from their carer, if any. This also presents an opportunity to ensure that carers are identified earlier, offered a Carers Assessment and thereafter appropriate support. Moreover, this also ensures that an individual’s choice is not reduced.

This local authority collaboration with carers should also include young carers, including those aged under 16. It is essential and appropriate that the role undertaken by young carers is recognised, and that where appropriate, young carers are involved in discussions and decisions on self-directed support.

Section 2    A duty to support carers

Unpaid carers are a key part of the health and social care system. Not only is it cost-effective to support carers in the roles they do, it makes sense that they themselves have clear rights to support which can prevent them from suffering ill health and from being unable to continue caring.

Section 2 provides a power to authorities to provide support to a carer following an assessment completed under section 12AA (carers assessments relating to carers of those aged 18 or over) of the 1968 Act or section 24 (carers assessments relating to carers of those under the age of 18) of the 1995 Act.

We are concerned that enacting the legislation simply as a power to offer support to carers will result in further, significant variances in practice, and an inequality of service provision across local authority areas. If carers are to be truly recognised as key partners in care, they
require dedicated support that will assist them to continue to care and prevent their
health and wellbeing from suffering, leading to being unable to continue with their
caring role.

By legislating for a statutory duty rather than simply a power, this Bill presents an opportunity to deliver a limited right to some practical support. There is a strong economic case for supporting carers in this way. The Scottish Government has clearly acknowledged the preventative, economic and social benefits of supporting unpaid carers in their role in Caring
Together, Getting it Right for Young Carers and other strategic publications e.g.:

Carers are equal partners in the planning and delivery of care and support. There is
a strong case on human rights, economic, efficiency and quality of care grounds for
supporting carers. Without the valuable contribution of carers, the health and social
care system would not be sustained”

Providing small interventions and support at the right time can prevent crisis and
subsequent breakdown of care, and can prevent carers from having to give up paid
employment and wellbeing-enhancing activities that sustain their life outside caring.

3. Carers Assessments - The route to carers accessing self-directed support

Section 2 of the Bill sets out how adult carers will be able to access SDS.

As the Bill currently stands, an adult carer’s ability to access SDS is reliant on them
accessing a carer’s assessment under section 12AA of the 1968 Act or Section 24 of
the 1995 Act. This places a duty on local authorities to undertake a carer’s assessment only where the carer is providing substantial and regular” care. This provides no route to offer preventative support to carers with lower level caring responsibilities, nor does it recognise that the ability for a carer to continue to provide care may also be dependent on additional factors such as their age and health.

By limiting a carer’s assessment to those providing “substantial and regularcare,
many carers are prevented from planning for future requirements such as expected
changes in the cared-for person’s condition, emergencies, or transitions.

Evidence from many local authorities shows that there continues to be poor uptake of Carers’ Assessments across Scotland, with only a small number of carer assessments being carried out. By limiting carersaccess to SDS in this way, we believe that it will undermine the intention of the legislation to provide carers with a means of accessing personalised
support, at a time at which they need it, to enable them to continue in their caring

The draft Care and Support Bill currently at Westminster proposes creating a single
duty for local authorities to undertake carers’ assessments. It will replace existing law
(including the Carers Act 1995) and will remove the requirement that the carer must
be providing a substantial amount of care on a regular basis. This will mean more
carers are able to access an assessment, and that the duty is comparable to that for
the people they support. This is not the case with the proposed legislation in Scotland.

The aim of this assessment will be to consider the impact of caring on the carer and
to determine whether the carer has support needs and what those needs may be. It
must also consider other important issues, such as whether the carer is able or
willing to carry on caring, or whether they want to work.

The ability of carers to access SDS should not be dependent on them being able to evidence that they provide substantial and regular care.

The provision of carersassessments should be reviewed, with the aim of providing
carers with easy access to a more outcome-focused assessment process. The Scottish Bill could be altered to help improve this situation by removing the requirement that carers have to show they are providing regular and substantial care.  The wording of Section 2 should be  changed and the reference to Section 12AA of the 1968 Act removed. The ability of carers to access SDS should not be dependent on them being able to evidence that they provide substantial and regular care.

Without this change, we risk moving behind the rights for carers which will be applied in England. There is an opportunity for Scotland to lead the way.

4. Section 16      Charging

The proposed Bill will give local authorities the power to charge carers for the
services they are assessed as needing. We strongly oppose this. As key partners in care, and the largest contributors of care, it would be wholly unjust to charge carers for the cost of support which helps them to carry out their caring role.

Supporting carers to continue caring, which will help to prevent crisis and avoid costly intervention from statutory services, will be hindered by charging carers for the support they receive. This proposed approach would also lead to further inequality for carers depending on whether their local authority chose to charge for support - there would be no consistency across Scotland.

As carers who access direct payments may potentially only need relatively small amounts of money, to charge carers in this context is wrong and is likely to counteract any benefits gained from offering self-directed support to carers.


(With thanks to Lynn Williams, policy offer at SCVO, who wrote much of the text for this blog) 

Friday, 19 October 2012

My Life With Autism: The Supermarket

Debbie has written a tense piece, no not fiction, real life. Here she describes going to the supermarket with her son:

Over the Top

When those of us who have autism in our families venture outside it can feel like walking through a minefield. We are only too aware of the danger. We just don't know exactly what will cause the explosion. One wrong step: BOOM!

The constant scrutiny is incidental.

Some of us feel like we are on exhibition every time we leave the house. Always on the brink of becoming some sort of grim public entertainment. There's always someone further down the food chain to feel superior to. Who needs Jeremy Kyle?

Matthew and I head for the front. Today we will enter the hostile territory of the supermarket. A logistical failure has left us without vital supplies. We are lucky enough to get a space in the relative safety of a disabled bay – our journey into the shop should present minimal risk.

Already we are attracting some interest. Well, I have parked in a disabled space and both of us can clearly walk.

Tut-tut. Blue badge nothing. She's no right parking there.

Eyes down. Focus on Matthew. I'm not ready for a staring match and I'm saving my energy for when I most need it.

In we go. I grab a basket as we pass. I don't need a trolley. We won't be buying much and, besides, I can't push a trolley and keep hold of Matthew at the same time. I know he will run, scream or lie down. But when? Where? Why? Well, I'll know when it happens.

We're in. Basket in my left hand, Matthews hand in my right. He's jumping up and down, making noises. His hood is up, providing a little sensory protection.

Why's she letting him do that?


It's the three minute warning. Matthew may need the toilet. It may just be a tactic to get away from this environment he has found himself in. This environment that I have brought him into. Either way, the toilet is the next place we are headed.

The disabled toilet is occupied.


Heads whip round.

What a racket. Why doesn't she shush him?

Can a head really turn that fast without doing it's owner an injury? If rubbernecking ever becomes an Olympic sport, Team GB is a shoe-in for gold. Matthew is becoming increasingly agitated. How did it get so hot in here? Sweat trickles down the back of my neck. Ladies it is. We're going in, and it might not be pretty.

Horrible blueish lights in here. To stop people injecting drugs by making their veins hard to see? Energy saving? Just because someone liked them? It doesn't really matter.

Now Matthews hands are clamped to his ears.

What's that laddie doing? He's too big: should be in the gents.


“No, it's OK, no-one is using the dryer, on we go”


“No, it's OK......”

Hand dryers are scary. An assault on the senses. The air pressure changes. Any bits of fluff or paper on the floor are flung around by the turbulence. Lets just hope we can get through this without one going off.

We're in, we are out. Hands washed.

“No, it's OK, Matthew, I'm not going to use the dryer”

He takes no chances though. He's been here before. Experience makes him cautious. Hands over ears, one arm linked through mine, we make our way back into the shop. I'm bent over sideways. Do we look strange? I'm sure we do. I know I'm being watched but I've got work to do.

“Good boy, Matthew, it's OK, we're back in the shop, dryer is gone”

Eh? Why doesn't she just make him walk properly?

Shelves and shelves of things to eat and play with. Trolleys and people coming from every direction. Giant freezers hum. A hundred beeps per minute from the scanners, all slightly out of sync. Chatter. Children crying. Dishes clattering and the faintly unpleasant odour of everything with chips being prepared in the café.

We head deep into the shop. It was cold near the freezers but now it's so hot. Milk. Far from the doors. Deeper and deeper. Avoid the sweetie aisle for now. To throw us, the supermarket changes it's layout now and then. I'm sharp enough to take avoiding action when necessary. Almost there. We're here. Basket on the floor. Matthew by the hand. One, two cartons into the basket. Matthew has held up well so far. Time for him to choose a treat.

I relax a little. Rookie error. Matthew slips his hand from mine and he's off. He has carried out his own visual sweep of his surroundings and spotted something I've missed. He's on it like heat-seeking missile. Packets of sweets at the end of an aisle. Of course. A well known tactic of the supermarket. How could I have forgotten? I thought we were relatively safe.

Some people just can't control their children.

Snap decision. Drop the basket and run? Just run? I choose the latter – damage limitation is all I can do now and keeping hold of the goods will make our escape a little quicker. He's at the sweets. Two packets ripped from their hooks.

Check her running in those boots

Trainers! Kit error. Still, I've caught up with Matthew. To be more accurate he has ripped open a packet of sweets and has stopped to eat them. That packet will be written off. I'll take the empty wrapper to be scanned. There's a chance for the other packet though.

“Matthew, give Mum the sweets”

“Sorry” (a word Matthew uses when anxious or unwilling to co-operate)
I only fight battles that I might win. We could carry on this wee stand off all morning. Or at least until the sweets are all gone. It could escalate until Matthew is lying on the floor screaming and I am on the verge of tears. Nothing can be achieved here.

I don't believe it – she's just letting him keep the sweets. No wonder he's so badly behaved!

Plan A was for Matthew to chose a treat. Well he has chosen it. Plan B. Quickly to the nearest or quietest check out. Avoid the ones with eye-level sweets to tempt Matthew. Damn ingenious supermarket. But at least in this one there are actually some check-outs that are sweet-free. Others are more ruthless and we're not ready to tackle those yet.

Empty check-out. I'm so, so glad. I can see the exit. Milk on the conveyor, Matthews hand still in mine. He'll not try to give me he slip again – he knows I'm back on full alert. And, anyway, he is contentedly munching his sweets.

“Are you enjoying them sweets? Not talking son?”

Ignorant. And look at her. A smile would crack her face.

“Enjoy the rest of your day!”

“Thank you. You too.”

Got the milk. Got Matthew by the hand. The doors are getting closer. Fresh air, I can almost smell it. Out in the open. Daylight. I can see the car. Safely inside. Engine on. And breathe!

Until next time.