National Autistic Soc Cymru Soc Svcs Bill Wales Response

7/31/2019 National Autistic Soc Cymru Soc Svcs Bill Wales Response

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The National Autistic Society Cymru (NAS Cymru) is Wales only member-led charity workingfor people affected by autism1.

The National Autistic Society was founded in 1962 by a group of parents who were passionateabout ensuring a better future for their children. In Wales, since 1994, we have been providinglocal support, services and actively campaigning so that people with autism get to lead the lifethey choose.

Across Wales we have over 900 members, 11 local branches and provide:

Information, advice, advocacy, training and support for individuals and their families

Information and training for health, education and other professionals working with peoplewith autism and their families

A Telephone Helpline, free to use.

Specialist residential, supported living, outreach and day services for adults

Out-of-school services for children and young people

Employment training support and social programmes for adults with autism.

NAS Cymru believes that the right support at the right time makes an enormous difference tothe lives of those affected by autism and we are committed to ensuring that their voices areheard.

1The term autism is used throughout this document to refer to all people on the autism spectrum including Kanner autism, Asperger Syndrome

and high-functioning autism.


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Autism is a lifelong developmental disability that affects the way a person communicates with,and relates to, other people. It also affects how they make sense of the world around them. Itis a spectrum condition, which means that, while all people with autism share three main areasof difficulty, their condition will affect them in different ways. The three main areas of difficultyare:

Difficulty with social interaction. This includes recognising and understanding otherpeoples feelings and managing their own. Not understanding how to interact with otherpeople can make it hard to form friendships.

Difficulty with social communication. This includes using and understanding verbal andnon-verbal language, such as gestures, facial expressions and tone of voice.

Difficulty with social imagination. This includes the ability to understand and predict otherpeoples intentions and behaviour and to imagine situations outside of their own routine.This can be accompanied by a narrow repetitive range of activities.

Some people with autism are able to live relatively independent lives but others may need alifetime of specialist support. People with autism may also experience some form of sensorysensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours.Asperger syndrome is a form of autism.

Research has shown that 1 in 100 children has autism2 and recent figures from the NHSInformation Centre has confirmed a similar prevalence figure among adults3. By applying the 1in 100 figure we estimate that over 25,000 people in Wales have autism. Together with theirfamilies, they make up over 100,000 people whose lives are touched by autism every single

day.

Unfortunately, many of these people face a huge challenge as they try to access much neededservices. In a survey conducted by NAS Cymru in Wales4, 60% of adults with autism whoresponded5 said they did not have enough support to meet their needs. As a result over 41% 6

live with their parents and only 7% are in full time employment.

Forty-four per cent of those who live in their own flat or house say that their family providesmost of their support. 96% per cent of parents are either very worried or quite worried about

2Baird, G et al (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South

Thames: the Special Needs and Autism Project (SNAP) LancetJul 15;368(9531):210-5.3

Brugha, T et al (2009) Autism Spectrum Disorders in adults living in households throughout England: Report fromthe Adult Psychiatric Morbidity Survey 2007 London: The NHS Information Centre for Health and Social Care4

National Autistic Society Cymru (2010) The Life We Choose: Shaping Autism Services in Wales5

These were a mixture of direct responses from adults with autism and parents/carers who responded on their sonor daughters behalf6

National Autistic Society Cymru (2008) I exist / Rwyn Bodoli: The message from adults with autism in Wales


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their son or daughters future when they are no longer able to support them7. The reform of thecare and support system is an opportunity to help end the isolation of adults with autism.

Given the right support many more people with autism and particularly those with highfunctioning autism or Asperger syndrome will be much more able to live more independently inthe community. Without this support, there is a far greater risk of social exclusion and thereforehealth problems, particularly mental ill health, developing.

We know that many adults with autism may only come into contact with services when theirneeds become acute, and they require more intensive, high level interventions and crisismanagement, such as psychiatric inpatient care. 45% of adults with autism responding to ourLife We ChooseWelsh survey said that their mental health would improve with more support.8

As a recent National Audit Office report9 states: Beside the negative impact of such crises on apersons life, acute services are also expensive, with inpatient mental health care costingbetween 200 and 300 per day.10 The services that many adults with autism need in order tobe included in society, avoid isolation and decrease their chances of developing mental illhealth, will usually be considerably cheaper to provide.

In particular, NAS Cymru believe that local authorities need to fund social support services,including befriending, social programmes, social skills and skills training for adults with childrenwith autism across the spectrum.

It will also be fundamentally important to ensure that as social care is reformed, a range of localand personalised provision is developed, so that those with the most complex needs can havethese met appropriately and near to their support networks.

7National Autistic Society (2012) The Way We are: Autism in 2012 (Survey and Report)

8National Autistic Society Cymru (2010) The Life We Choose: Shaping Autism Services in Wales

9National Audit Office (2009) Supporting People with Autism Through Adulthood, Part 3, p45

10NAO, above, Citing: Curtis L, Unit Costs of Health and Social Care (Canterbury: Personal Social Services

Research Unit, 2008).


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The National Autistic Society Cymru warmly welcomes this consultation and its broad aims. Weare pleased that the consultation document has taken on board the Law Commissions AdultSocial Care Report (2011) recommendations, with sensible adjustments.

We believe this Bill, after refinement and supported by appropriate guidance and resourcing,

can create the conditions for delivery of improved outcomes in social care provision.

We also think that the Bill enhances the opportunities to deliver elements of the ASD StrategicAction Plan for Wales (2008), notably in respect of the emphasis this Bill places on localprovision of preventative and low-intensity interventions in support of people in needandspecifically, vulnerable people including those affected by autism.

Given that the Welsh Government has recently stated its intention to consult on the future of theASD Strategic Action Plan for Wales11, there is a clear opportunity to align that Strategy withthis Social Services (Wales) Bill, so as to ensure that the ASD Strategy provides a blueprint forsocial care provision for all those with autism in Wales.

The National Autistic Society Cymru has held a series of member forums across Wales todevelop our response and has worked alongside sectoral partners in formulating this responseand contributing to partnership responses (WCVA and Wales Carers Alliance).

Our response addresses only those issues identified as having greatest relevance to the 1 in100 people in Wales with autism and their families/carers.

11Deputy Minister for Social Services, in National Assembly for Wales Plenary, Health and Social Care Questions,

25.04.12, responding to Nick Ramsay AM: It is important to have the consultation that we intend to have in thesummer


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1. Develop a code a practice that specifies the preventative services that need to bedeveloped for people with autism

The Code of Practice should specify the types of preventative services Local Authorities andpartners should provide to people in need. Without such specification we are concerned that

local authorities will offer generic wellbeing services such as leisure centre and libraryprovision so as to meet their obligations to provide preventative services., which while importantmay not go far enough in preventing people with autism (and others) from going into crisi.

For people with autism, the preventative services required to maintain and enhance theirwellbeing demand engagement with the individual in their design and delivery and a clearunderstanding of autism among professionals. An adult with autism may, for example, requirespecialist support in order to plan, travel to and accessa genericwellbeing service such as a library.

In developing the Code of Practice, we thereforerecommend that Welsh Government engage furtherwith those charities supporting people affected byautism and their client groups.

We recommend that the Welsh Government to engagewith the ongoing Adult Community Support andMonitoring Services for ASD in operation at a regionallevel across Wales. These recently commencedservices are collecting data on the actual (rather thanassumed) needs of adults with autism, and providing

low-level helpline or one-stop shop advice services forthose individuals.

These could include support such as social skillstraining, independent living training, social groups and befriending. These are the types ofsupport adults with autism consistently call for.

For example, an NAS Cymru survey, conducted in 2010 revealed that:

59% of adults with autism in Wales would like to have employment support,

59% would like help to develop their social skills,

56% would like counselling, 48% would like to have education and training opportunities,

72% of those surveyed said that with more support they could do more of the things theywanted,

69% said that with more support they could better express their wants and needs12.

12National Autistic Society Cymru (2010) The Life We Choose: Shaping Autism Services in Wales, p24-25

There arent any support serviceslocally for Aspergers and we cantaccess services from the ChildrensDisability Team as my son has an IQover 70. It seems that the localauthority and local health board cantcome into agreement whether Aspergersfits into Learning Disability or Mentalhealth Services, so we have to make dowith no support

Parent (survey respondent, 2010)


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Increasing provision of support services to adults with autism will save money by preventingcrisis and mental health breakdown. There is evidence of increased prevalence of mental healthproblems amongst people with autism and Asperger syndrome13 and research undertakenwithin the ASD Strategic Action Plan (Wales) evidenced that rates of depression and anxietyamongst older people with autism were significantly higher that those across the generalpopulation14.

13Kim, J.A. et al. (2000). The prevalence of anxiety and mood problems among children with autism and Asperger

syndrome, Autism, vol. 4, pp 117-13214

Stuart-Hamilon, I. (2009). The Circumstances and Support Needs of Older People with Autism. Cardiff: WelshAssembly Government


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2. Mandate the provision of specialist advocacy services

With regard to provision of advice and assistance: We believe that advice and assistance

should be amended to include specific reference to advocacy services operating independently

of those public bodies engaged in social care service provision.

In using the term Advocacy we refer to the provision of services that work alongside people

with autism (and other disabilities) to ensure that they:

Fully understand what is happening to them,

Are able and allowed to make their views known,

To exercise choice when decisions about them and their future are being made.

In consultation forums, NAS Cymru members

highlighted the positive role played by existing

advocacy providers in Wales, with specific reference

to SNAP Cymrus About Me Child advocacy service,Pembrokeshire Peoples First ASD Advocacy Service

and Advocacy Matters tailored service for people

with Asperger syndrome.

Members highlighted the value of Person Centred

Planning in developing appropriate care support and

service responses to meet individual needs.

Advocacy support was regarded as critical to

enabling person centred planning approaches in

partnership with provider bodies.

Such advocacy services could be jointly commissioned by local authorities and local health

boards (LHBs), with regional provision offering a cost-effective route to achieving the scale and

range of advocacy capacity required to support all those individuals with needs.

Advocacy services must have sufficient range of specialism to effectively understand and

support the needs of those with autism.

Advocacy providers must be able to demonstrate their capacity to effectively advocate on behalfof all significant client groups accessing care services. Generic social care advocacy services

are unsuited to engaging with individuals who face particular challenges understanding,

interacting and communicating with others.

With my own disability, a disabled

child and a child with ASD, along

with adoption, many aspects of thebill seem to apply. However, we do notget any of the support or benefits itdescribes.

Parent (email consultee)


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3. Ensure the development of autism expertise among those who are carrying outunified assessments

Because autism is a hidden disability, it is vital that assessments of need are conducted by

professionals adequately trained to identify the hidden

needs and vulnerabilities of those affected by autism.

Many NAS Cymru members consulted reflected onhaving falling through the gaps between social care

and mental health services, or to a black hole in

services for many people with autism. It can be very

difficult to accurately assess and identify the diverse

needs of people with autism. To do this, specialist

training is required as is input from the people that know

the individual the best and of course, the individual

themselves.

Although we accept that there should be different levels of complexity of assessment,

proportionate to needs, the NAS is concerned that as people with high-functioning autism and

Asperger syndrome are often seen as intelligent and fine despite having substantial needs, this

is a particular area of concern, likewise, the continued use of IQ assessment as a gateway to

services or filter between learning disability and mental health. We know that in areas where

there is more autism expertise, a greater number of adults on the spectrum are deemed eligible

for the support they are entitled to.

We also often hear that for those with autism and an accompanying learning disability, their

autism is overlooked and while may be able to access some services, these are not always

appropriate to their needs. It will be difficult to make sure that all community care assessors will

have a comprehensive enough understanding of autism to fairly assess those on the spectrum,

particularly those with more complex needs. We therefore recommend:

The development of regional assessment hubs to support Local Authorities to fairly and

comprehensively assess people with autism

These hubs will help up-skill assessors in all local authorities across Wales and

undertake assessments in more complex cases

Close collaboration between care, education and health professionals would be a

prerequisite to effective assessment whether conducted locally, or regionally.

There seem to be multiple black holes in

the whole system and we keep findingthem for both children, although forvery different reasons as they havedifferent needs

Parent (email consultee)


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The NAS, in partnership with the British

Association of Social Workers, has put together

a (bilingual) step-by-step guide to help social

care staff prepare for and deliver assessments

for adults with autism15. With greater

understanding of the way autism affects each

person differently, assessors can make sure

that support and resources are directed in the

most cost-effective and appropriate way.

The guide highlights the range of factors that

may make assessment of individuals with an ASD needs difficult 16. For example the

person may:

o have limited communication skills and understanding,

o feel uncomfortable having a conversation with a stranger,

o not understand who you are and what you want,o not be able to define what their own needs are,

o not be able to talk about or explain their needs very easily, and so risk

misrepresenting them,

o be able to speak fluently, but this may mask difficulties with actual understanding,

o try to say the right thing in response to your questions rather than stating what

their actual needs are,

o find it hard to plan for the future or to think about change, and be uncomfortable

talking about support that involves changes to an established routine or a move to

a different service,o not understand what you are asking and take things very literally, so if you ask

Are you able to wash yourself on your own? a person might say yes when in

fact they can only do it with verbal prompting at every stage.

The ASD Strategic Action Plan for Wales has led to the establishment of diagnostic

networks for ASD across the Welsh Health Boards. With work underway to establish an

All-Wales ASD Adult Diagnostic and Pre-Post Diagnostic Counselling Service there

exists growing potential to share expertise between Health Boards and Local Authority

Care and Education Teams.

We believe that in relation to assessment the Code of Practice should make it clear that

all assessments of individuals on the spectrum must be undertaken by a professional

with clear understanding and training in the condition, whether regionally or locally.

15National Autistic Society (2008) Social Care: Assessment of Needs for Adults with an Autistic Spectrum Disorder

16National Autistic Society (p12, 2008) Social Care: Assessment of Needs for Adults with an Autistic Spectrum

Disorder

Most people dont realise I am autisticuntil I tell them Generally evenprofessionals dont understand howdifficult each day can be for me so Iguess Ive given up trying to get help.

Person with Autism (survey respondent,2010)


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Wellbeing of People in Need

Question 1 Do you agree with our proposals to base this legislation on the concept ofmaintaining and enhancing the wellbeing of people in need?

We believe that the concept of maintaining and enhancing the wellbeing of people in

need is an appropriate basis on which to develop this legislation.

Question 2 Do you agree with our working definitions of wellbeing and people inneed? Do you wish to suggest alternatives?

As autism is a hidden disability people are often not identified as being in need. The

definition of wellbeing covers many of the key problems people with autism face. As

such, we welcome it, but we are concerned that without better awareness and moretraining, many people with autism will continue to miss out on vital support.

In a survey carried out by NAS Cymru, 63% of adults with autism have had problems

trying to access support from a local authority or health service, rising to 70% of adults

with Asperger syndrome or high-functioning autism. 36% of adults with autism are not in

receipt of a service at all, as their local authorities do not have appropriate provision in

place. 49% of adults with autism have experienced mental health problems because of a

lack of support17. As such, and in line with the ASD Strategic Action Plan for Wales, we

believe it is vital that raising awareness of autism is a priority. Also, this is why we believe

access to quality advocacy (see our key recommendations above) is so important for

people with autism to help ensure that they are accessing the support to which they are

entitled.

In addition to the above, the term people in need may not reflect the terms in which

those seeking to access services will self identify. It should be noted that some

individuals with autism (and other conditions/disabilities) some of whom have

significant needs - may not consider themselves as people in need, because of their

lack of insight or because they self-identify as a person with autism or other disability

and because they may not want to identify themselves as having needs, due to thepotential stigma attached to this concept.

17National Autistic Society Cymru (2008) I exist / Rwyn Bodoli: The message from adults with autism in Wales,

pp5-6


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Question 3 What are your views on the proposed general duty on local authorities andtheir partners to maintain and enhance the wellbeing of people in need in their localareas?

We believe this proposed general duty is critical to ensuring that the wellbeing of people

with autism is maintained and enhanced. By unifying the legislation covering children and

adults the NAS hope that many of the problems associated with transition which is a

particular problem for people with autism can be overcome.

We welcome the identification of people who Have an autistic spectrum disorder as

adult(s) at risk within the consultation document (p64, 4.3.7).

This correct identification reinforces the importance of providing preventative and low-

level services to all adults with autism regardless of their eligibility for social care services

as determined by the proposed national eligibility framework.

Question 4 What are your views on the proposals to provide guidance on this areathrough the Code of Practice?

We believe Welsh Government should implement a Code of Practice that specifies the

preventative services that need to be developed for people with autism. See Our Key

Recommendations Above.

Information, advice and assistance

Question 7 Do you agree that we need to make a significant step forward in makinginformation, advice and assistance accessible?

Yes, the improved provision of information advice and assistance is critical to ensuring

those individuals entitled to assessment and services understand their rights,

entitlements and the processes in place to support them.

We believe that these duties should be amended to mandate the provision of

specialist advocacy services. See Our Key Recommendations Above.

Research undertaken in Wales by NAS Cymru evidences that many children and adultswith autism have never had an assessment of needs. 35% of parents surveyed in Wales

told us that their child had never had an assessment of need, with similar results for

adults.18

18National Autistic Society Cymru (p22, 2011) The life We Choose: Shaping Autism Services in Wales. A report

based on survey responses of 415 people (in Wales) with autism and their family members.


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Question 8 Do you think that the legislation should specify any particularorganisational form for this, such as an information hub?

We believe the legislation should go further in specifying the forms and means of

information promotion that should be delivered by local authorities.

Whilst an information hub may be one of the appropriate means of promotion anddissemination required, there is a risk that such a facility or facilities would not engage

with a significant number of people with autism, who can not or will not use location-

based facilities without support to plan, travel and negotiate such engagement.

With regard to the proposed new duties (g) requiring local authorities to:

o Publish information, offer advice and assistance about the range and level of

services for people in there area;

o

Publish information offer advice and assistance about the social care assessmentprocess

We are concerned that these duties as presented, do not provide sufficient clarity as to

the forms and range of provisions required. Specifically, we are concerned that these

duties will allow local authorities to publish information in one place (a leaflet, a website)

so as to fulfil their duty.

These duties should therefore be amended, placing duties on local authorities to:

Publish and proactively promote information in a range of forms and in all those

locations that might be accessed by people in need

The duties could also be amended to explicitly mandate the provision and dissemination

of online, printed and telephone information. It should also be made clear that information

needs to be accessible to people with a wide range of needs, including making

information available in easy read or Plain English

Assessment of Need

Question 10 Do you agree there should be a single right of assessment?&Question 11 Do you agree the new system will benefit service users and their carers, aswell as professionals in understanding their duties of assessment? If not, why?


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Yes, we believe the principal of a single right of assessment for children and adults is

appropriate, provided that assessment is needs-based and appropriately formulated so

as to accurately identify and review the needs of people with autism.

Assessments must continue to identify those factors (such as parental capacity to

support / family circumstances) that are currently central to assessment of childneeds,

as well as other safeguarding considerations specifically relevant to children or adults.

A single right of assessment must not therefore create an assessment process in which

child and adult needs are considered identically.

Further to this, as part of the reform to the assessment process, it is vital that it is clear

that assessments are not seen as a one off. This is particularly important for those with

autism who are placed out of area. At the NAS, we know that when adults with autism

are placed out of area, there is a greater risk that their needs are not re-assessed and so

they may spend a significant amount of time in inappropriate settings, while they could

have been better supported elsewhere.

The presumption should be that, for those that need it, people with autism should be

supported in small community based provision and that those sent out-of-area, there

should be a yearly personalised assessment of needs.

This Bill should provide clarity on how social care services differ and are distinct from

NHS led services which might be commissioned following an assessment of need.

Question 13 Is it helpful to prescribe the assessment process and who should beinvolved?&Question 14 What information do you think should be included within the commoncore of a new integrated assessment?

See our Key Recommendation 3.

Question 12 Do you agree that law and policy should provide for proportionateassessments i.e. a formal prescribed assessment for people who have social careneeds?

Linked to the point above, it can be very difficult to accurately assess and identify the

diverse needs of people with autism. To do this, specific training in autism is required as

is input from the people that know the individual the best. Although we accept that there

should be different levels of complexity of assessment, proportionate to needs, the NAS

is concerned that as people with high-functioning autism and Asperger syndrome are


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often seen as intelligent and fine despite having substantial needs, this is an area of

concern.

Without the proper support people with autism can fall into crisis and subsequently

require costly, reactivecommunity mental health services.

In addition to the above, the NICE Clinical Guideline for recognition, referral and

diagnosis of children and young people on the autism spectrum (2011) Recommends:

Include in every autism diagnostic assessment development of a profile of the childs

or young persons strengths, skills, impairments and needs that can be used to create a

needs-based management plan...taking into account family and educational context..19

If each diagnostic assessment included such a profile this would be invaluable

information to help inform social care needs assessments.

The adoption of needs-based care management plans in Wales would contribute tobetter-informed assessment and review of social care needs across the diverse autism

community, allowing trained assessors to better appreciate the specific needs, strengths

and weaknesses of the individual over time.

With specific reference to the proposed single duty for local authorities to assess a

person where it appears to them that their needs can be met by a social care service

(Provision h, p19, list item two)

We recommend that this duty be amended so as to reflect:

1. The hidden nature of autism as a disability, replacing where it appears to them with

where appropriate assessment identifies

2. Recommendation 7 of the Law Commission Adult Social Care Report (2011):

The duty to assess should be triggered where it appears to a local

authority that any person for whom they may provide or arrange for

the provision of community care services may have social care

needs that can be met by the provision of services. 20

19Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (NICE)

Recommendation 44, p13, 201120

Adult Social Care (2011) Law Commission Report, p32, Recommendation 7


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This Recommendation is vital to enshrining a needs-led assessment and

response, as opposed to a service-led assessment of needs, as the Law

Commission Adult Social Care Report explains:

we also remained convinced that the trigger for the assessment

should be amended to refer to needs that can be met by services,

rather than needs for services.21

3. The responsibility to provide other preventative services for those not identified as

requiring a social care service, adding or by provision of appropriate preventative

services.

21Adult Social Care (2011) Law Commission Report, p32, Discussion 5.23


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Portability of assessments

Question 17 Should the Bill impose a general duty on local authorities and their

partners to provide social care services to a person in need who resides in their area?

We fully support this duty.

Question 18 Do you agree that portability of assessment will bring greater consistency

of care for services users? Do you agree that it will lead to savings?

The proposed duty to accept an assessment from another Local Authority should

contribute to improvements in the consistency of care services across Wales.

The impact of this duty will depend on the extent to which each Local Authority area is

able to offer an appropriate range of core care services and low-level preventative

services.

An individual moving from a Local Authority that offers a wide range of appropriate

services, to a Local Authority that does not, will still be poorly served following relocation.

Question 19 When someone moves into a new local authority area, what do you think is

an acceptable period for which to require that the new authority must maintain the

assessment of a service user before it reviews the case?

&

Question 20 Do you agree with our proposals for notification and transfer ofinformation?

Transition is a difficult process for many people affected by autism. It is therefore

important to balance the potential anxiety and disruption caused by reassessment, with

the potential benefits of assessment review for that individual. We recommend that

reassessment should commence within12 months, or sooner if requested by the

individual or their parent/carer.

We welcome the intention to place a duty on local authorities to make arrangements for

the transfer of information to the new authority. However, we believe the Bill could go

further, placing a duty to manage the transition process in coordination with the service

user, carers and the receiving Local Authority.

We believe that a duty to plan for transition, from the first point at which the existing

Local Authority becomes aware of the intention to relocate, would enable smoother


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transition, more effective coordination of services and a reduction in cases of lag where

services do not recommence in the new location for some time after the individual has

moved.

Such a duty would hold particular benefits for people affected by autism, many of whom

find transitions between services, staff and locations extremely stressful. Transition

planning should enable service users to meet staff, visit service locations and familiarise

themselves with new peer groups well in advance of any relocation.

National Eligibility Framework

Question 26 Do you agree the new framework should extend to all categories of peoplein need both children and adults?

We believe that the new National Eligibility Framework must be applied differently for

children and adults, as the needs of children and adults with autism require distinct

consideration, assessment and service responses.

Whilst children and adults with autism may share similar difficulties, their immediate

needsare likely to be determined by present life circumstances: For example:

family/carer context, educational progress, employment prospects, social engagement

and housing needs. Assessment of needs is must therefore be sensitive to age and all

those contextual factors relevant to that stage in the individuals development.

Question 23 Do you think that a new national eligibility framework will be beneficial?

We support the establishment of national eligibility criteria which should provide, clarity,

consistency with less local variation and greater certainty for those seeking assessments.

Consideration must be given to the implications of applying national eligibility criteria on

those individuals currently receiving care services who would not be, were higher

thresholds for eligibility established nationally.

Appropriately communicated arrangements for transition or tapering-off of services must

be established to meet the needs of these individuals whose needs may rapidly escalateif changes to services upon which they rely are made suddenly and without their full

involvement.

Question 25 Do you believe that the current four-level definition of eligibility: critical,substantial, moderate and low is a helpful way of categorising eligible needs?


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A four-level or tier definition of eligibility is regarded as a practical means of achieving a

level playing field of needs across the diverse population requiring assessments under

this framework. The Consultation Document does not however provide sufficient detail

regarding the intended application of those eligibility levels for us to endorse the

proposed national eligibility criteria, at this stage.

We believe that however it is defined, if eligieable needs are met, then individuals will be

enabled to have a social network, employment/education/volunteering as appropriate, a

family life and a healthy lifestyle.

The objective of care interventions should be to support individuals so that they shift

down the levels of assessed eligibility (e.g. from moderate to low), over time. Whilst for

some this reduction in needs may never be realised, for others, appropriate service and

support interventions can enable individuals with autism to realise greater independence.

As already outlined, alongside the eligibility framework, it is vital that preventative

services are developed for those people with autism (and other disabilities) identified asbeing in need but not eligible for social care services. This will ensure that those

individuals needs to not escalate into higher levels of eligibility.

Without preventative support services it should be expected that people with autism

assessed as having moderate and low needs may fall into crisis or breakdown,

demanding reactive and often costly interventions which may have easily been avoided.

2.7 Direct Payments

Question 35 Do you agree with the proposal to use this Bill to bring together legislationregarding the provision of Direct Payments in Wales?

We support the proposal to use this Bill to bring together legislation regarding provisionof Direct Payments in Wales.

Question 36 Do you agree with the proposals to allow Welsh Ministers broad powers toextend the existing Direct Payments arrangements so that they can introduce aneffective model of self-directed support and control that also encourages a greateruptake of Direct Payments arrangements in Wales?

We agree with the proposals but believe that any extension of Direct Payments uptake

will require further, focused consultation. We understand that the Welsh Government will

consult on (sic) Self-Directed Support in the near future and we look forward to engaging

in that consultation process.


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Whilst we believe that Direct Payments can provide some individuals and families with

greater freedom, choice and control, we are also aware that Direct Payments may place

new responsibilities and burdens on the people with autism and/or their parent/carers.

Therefore, it must be clear that if individuals do not want to take on Direct Payments,

they will not be forced to, but at the same time, steps should be taken to ensure that

people in receipt of care are able to have greater control over what that care looks like.

Question 37 Do you have views on other ways in which Direct Payments could beextended beyond the current scheme? For example, should they be extended to allowthe purchase of residential accommodation or to allow a local authority orindependent organisation to be an agent or a broker for services and hold a budgeton the service users behalf?

In consultation forums, NAS Cymru some members reflected on the benefits of Direct

Payments. Examples were provided of direct payments allowing parents to support their

children at home, instead of placing them in residential settings and of Direct Paymentscreating the freedom to handpick appropriate staff who could then work in a person-

centred manner, managed by the parent-carer and budget holder.

However, many members voiced strong concerns about their capacity to manage Direct

Payments and the stress and responsibility created by resultant contractual relationships.

Concerns were raised over the workload, complexity and burden of employer

responsibility placed on those using Direct Payments.

There were also concerned that individuals using Direct Payments may in some cases

find themselves in debt to care providers or having budgeted incorrectly and then forced

to go without any services. Direct Payments can amount to significant sums which

demand careful financial oversight. There is therefore a need to ensure that:

o Individuals using Direct Payments are fully and appropriately informed of their

rights and responsibilities.

o Transitional arrangements are in place to ensure continuity of support.

o Nobody is forced or pressured into uptake of Direct Payments.

o Opting out must be as easy as opting-in.

o Brokerage, Cooperative and Agent services are effectively regulated andunderpinned by robust governance and accountability structures.

o That financial safeguards exist to protect both those using Direct Payments and

those care providers receiving them.

We believe that extension of Direct Payments must be carefully managed so as to

properly understand the short, medium and long term implications for people using care


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services, public bodies and providers of all kinds. A shift to direct payments may create a

very different care provision market that holds significant risks as well as potential

benefits for citizens.

A variety of brokerage, cooperative and agent models exist and we are monitoring

feedback from NAS members engaged in emerging services across the UK. We hope to

provide examples in response to the forthcoming Welsh Government Self-Directed

Supportconsultation.

For further information, please contact:Neil InghamExternal Affairs Manager Wales02920 629 [email protected]

Documents

National Autistic Soc Cymru Soc Svcs Bill Wales Response