Articles in Category: Children - Specific Health Conditions

Autism and Asperger Syndrome

on Tuesday, 25 June 2013. Posted in Children - Specific Health Conditions

What is Autism?

Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and adults with autism have difficulties with everyday social interaction. Their ability to develop friendships is generally limited as is their capacity to understand other people’s emotional expression.

People with autism are not physically disabled in the same way that a person with cerebral palsy may be; they do not require wheelchairs and they ‘look’ just like anybody without the disability. Due to this invisible nature it can be much harder to create awareness and understanding of the condition.

Because an autistic child looks ‘normal’ others may assume they are naughty or the parents are
not controlling the child. Strangers frequently comment on this ‘failing’.

People with autism can often have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world.

What are the characteristics of autism?

People with autism generally experience three main areas of difficulty; these are known as the
triad of impairments.

  • Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people)
  • Social communication (difficulty with verbal and non-verbal communication, for example not fully understanding the meaning of common gestures, facial expressions or tone of voice)
  • Imagination (difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).

In addition to this triad, repetitive behaviour patterns and resistance to change in routine are often characteristic.

What is Asperger Syndrome?

Asperger syndrome is a form of autism, a condition that affects the way a person communicates and relates to others. A number of traits of autism are common to Asperger syndrome including difficulty in social relationships, difficulty in communicating, limitations in imagination and  creative play.

Asperger syndrome is usually used for those who are more able, who have better language development and who try to make social contacts but in naive and inappropriate ways. People with Asperger syndrome do not usually have the accompanying learning disabilities associated with autism; in fact, people with Asperger syndrome are often of average or above average intelligence.

Because of this many children with Asperger syndrome enter mainstream school and, with the right support and encouragement, can make good progress and go on to further education and employment.

ASD Info Wales

This is the national site for Autistic Spectrum Disorders (ASD). Here you will find information about Autistic Spectrum Disorders (including Autism and Asperger Syndrome), service details, training opportunities and updates on the implementation of the ASD Strategic action Plan for Wales.

You will also find downloadable resources that can be shared with individuals with ASD, their family and carers.

This site is aimed at those working with children and adults with ASD.

Access the website at www.asdinfowales.co.uk 

Wales Government Strategies on Autism- updated December 2016

The Welsh Government has consulted with parents families and people with autism and related conditions to develop a strategic action plan and delivery plan that aims to ensure people are better supported.

The Plan outlines actions to:

  • introduce a 26-week waiting time target from referral to first appointment for children with autism
  • transform the education support for children with ASD
  • implement a national assessment pathway for children
  • improve employment opportunities for people with autism
  • support organisations to become Autism-friendly
  • raise awareness of information and resources.

For more details visit the Welsh Government website here.

Cardiff and the Vale councils have pooled resources to fund a resource for adults with ASD. It is based in Penarth and can offer a range of support services.The Vale of Glamorgan website has more information on services available for adults on the spectrwm herehttp://www.valeofglamorgan.gov.uk/en/living/social_care/adult_services/autism_in_the_vale/adult_autism_advice/Autism-in-the-Vale.aspx In addition to these resources you will find information on our main website here

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More Information

Appeals, Complaints and Comments

Appeals, Complaints and Comments

You can appeal against a decision if you disagree with it.  Examples of the sort of decision you can appeal against are:

  • a decision that you do not appear to need an assessment.
  • following a specialist or comprehensive assessment, a decision that you do not qualify for a service.
  • if you think you need more services or different services from those which are proposed or being provided.

You can complain if you think the processes have not been followed properly or because the quality of your service is poor.

There are several ways of dealing with disputes ranging from the informal to the formal, by contacting a councillor, AM or MP to a judicial review or an appeal to the European Court.

If a complaint or a dispute with social services arises, you may use the local authority's complaints procedure where the following procedures apply:

  • Anyone can make a complaint and can act on behalf of an individual. 
  • Complaints normally dealt with by an external provider may also be referred if the complainant is dissatisfied. 
  • The complaints process has three distinct stages.  You may make your initial complaint at either stage 1 or 2.

Stage 1 Local Resolution

Most problems are best sorted out by the staff who are working with you.  Contact the person in charge of your local services or contact the social services complaints officer who will speak to that person on your behalf.  You can do this face to face, by telephone in writing or by e-mail.  They will do their best to sort things out quickly.  This should be no more than two weeks.

Stage 2 Formal Consideration

If not satisfied at Stage 1 you can process your complaint to Stage 2.  Contact the social services complaints officer who will arrange for someone not involved providing your service to investigate your complaint.  You have the right to expect a response from the council within 5 weeks.  You may contact the complaints officer to make your initial complaint or after having spoken to the staff who work with you.

Stage 3 Independent Panel Hearing

if you remain unsatisfied at this stage you can ask for a review of how social services have dealt with your complaint by an independent panel. 

You may ask for more detailed information about the complaints procedure first to help you decide whether you want to make a complaint. 

Remember its your right to complain if you are not happy with the quality of the services you receive and it is social services duty to look into your complaint and try to resolve it.

Assessment

Assessment

Unified Assessment is the name given to the assessment process which involves health and social care professionals working together to assess and manage care and share information. Please note that the following guideline may need reviewing in light of recent legislative changes such as the Social Service & Well Being Act but principles remain similar. 

Assessments underpin any funding decisions that are taken so it is essential that you prepare for and participate in this process. If you do not agree with decisions you have the right to appeal against a decision and free advice and assistance is available. Please contact us for information if in any doubt.

There are three main stages in the process:

Stage 1 Assessment

This is the process of collecting information from the individual, the carers and others about the individual's needs and wishes.  Assessment should be carried out according to the following:

  • Local authorities have a duty to assess individuals if they have the 'appearance of need', including people with higher-functioning autism and Asperger's syndrome.
  • They aim to empower people, by enabling them to make informed choices and maximise their independence according to their individual circumstances. 
  • The main purpose of an assessment is to identify needs and how to meet them.
  • Assessments should be carried out without reference to financial resources, availability of local services or locally preferred options.
  • Authorities have a duty to provide users and carers with a full range of information about all services and the rights of users and carers.
  • Information gained during assessment is confidential and shared only if the law says it should be.  Users or their agents have a right to access the information under certain conditions. 
  • A care co-ordinator will carry out the assessments, who would usually be the most appropriate professional.
  • Assessments should be carried out in a timely manner, in informal settings such as the home, and be proportionate to the level of need. 
  • There are specific types of need included in government guidance.  All needs should be assessed in the light of their impact on independence, daily functioning and quality of life.  The focus should always be on outcomes for service users and their carers.
  • A person-centred approach should be taken during assessment and care planning.  Person-centred planning and reviews also take place in addition to an assessment, if appropriate.
  • Carers have a right to have their views acknowledged in the assessment process both in helping to identify the individual's needs and wishes and also to express their own views of the individual's needs and wishes as well as their own needs.  The role of carers continues once the individual has left the family home.

Carers may request an assessment both of their own ability to care for an individual and of their own need for services for themselves.  Carer's must be informed of their right to an assessment.

Stage 2 Making the Service Provision Decision

The service provision decision for social services makes clear which needs are eligible for support.  The needs identified as a result of the assessment will be considered with the service user/carer and agreement sought on the most appropriate way of meeting them.  This may involve support provided within the family network, by accessing voluntary sector services, statutory services or signposting to other sources of help and support.

The procedures to be applied are as follows:

  • All risks are balanced against the independence of the individual in the light of the four key factors of independence, i.e. the individual's autonomy and freedom to make choices, health and safety, management of daily routine and involvement in other activities. This is based on the what would happen if no help were to be provided.
  • There are four categories of eligibility (critical, substantial, moderate and low) laid down in the local authority's Eligibility Criteria.  Once the risks are assessed, professionals should determine the position of the individual's needs within these bands.  If the needs are above a threshold determined by the authority they become eligible needs and must be met.  A holistic approach is taken, according to the four key factors of independence, even though the needs are identified separately.
  • At this stage there should be no reference to financial resources, locally preferred options or the local availability of services.

Stage 3  Care Planning

This is the process of arranging provision of services:

  • Care planning should address the eligible needs of the individual, the views of the individual and of the carer(s) and cost considerations.  Services should be needs led with full information on a range of services. 
  • Care planning should be responsive to the age, living circumstances, location, disability, gender, culture, faith, personal relationships and lifestyle choices of users.
  • Care planning should be flexible and adaptable to desired outcomes and expectations.
  • Care planning should identify outcomes, i.e. the desired changes aimed at improving independence and quality of life.  A recordmust be made, with timescales for achievement.
  • Care planning should involve service users, carers and professionals in reaching an agreed care plan and identify the most appropriate aervices to acheive the desired outcome.
  • Care planning services should be provided as holistically as possible to suit individual needs and maximise their potential for independence.

Where there is a genuine choice of services, the authority may choose a service based on quality and cost, taking the user's and carer's preferences into account.  Cost ceilings may be used as a guide only and if lack of finance is a reason for making a choice, it must be shown by evidence.  The authority should not impose its own preferred models of care.

Reviews or re-assessments must take place regularly and have a review date.  They should focus on the needs of users and their carers and be evaluated according to a list of factors laid down in guidance.

Services may only be withdrawn if certain conditions are followed, i.e. if a full re-assessment has taken place to show that the individual no longer has eligible needs or if they can be met some other way.  There can be no assumption of alternative support from carers.  The withdrawal of services may go against the user's natural rights.

Users and carers may play an important role in monitoring services and may request support in doing so.  Should a service break down, the original need for the service still applies and it is the authority's duty to provide for it.

There is no charge for an assessment or for giving advice and information.  A person may have to pay for community care services depending on how much service they get and how much money they have.  See the section on financial matters for more information.  If eligible, they will receive free nursing care in their home or in a care home, although there may have to be a contribution towards other aspects of care such as personal care, food and accommodation costs.

Person Centred Approaches to Assessments and Care Planning

The Service Principles and Unified Assessment Guidance state clearly that social services and health should always take a person centred approach to assessment and care planning.  (It should be noted that a person centred approach is not the same as person centred planning.)

 

Also see Carers' assessment

Direct Payments

Direct Payments

What are Direct Payments?

Direct Payments are cash payments to an individual from a local authority that are an alternative to directly arranged community care services. Rather than the local authority social services department providing or arranging the community care services it has assessed you as needing, you receive money to enable you to arrange your own services, allowing you more choice and control over the way your care and support needs are met.

Direct Payments can be made to people who are eligible to receive support from Social Services, allowing them to arrange their own care by directly employing a personal assistant or contracting with an independent agency.

The payments are available to disabled adults and children, and can be made to people with physical or sensory impairments, learning difficulties or mental ill health. They are also available to non-disabled people who have caring responsibilities, allowing them to continue with their role of looking after a disabled adult or child. Older people who need support to continue living in their own home may also be eligible to receive Direct Payments.

Direct Payments give people the power to make their own care or support arrangements, putting the service user in control and offering much greater flexibility by allowing individuals to make arrangements that suit their lifestyles.

Direct Payments can now also be made to ‘suitable people’ assessed by the local authority as being able to receive a Direct Payment on behalf of someone without the capacity to agree to receive a payment. A ‘suitable person’ will usually automatically be someone who has the power to make welfare and health decisions granted by a Lasting Power of Attorney, or having been appointed by the Court of Protection. Such a person has to agree to become a ‘suitable person’.

Otherwise, the local authority can agree that someone else can become a ‘suitable person’ who is best placed to promote the interests, wishes, and beliefs of the person without capacity. There is a process of assessment to be followed in all cases.

The ‘suitable person’ will be required to sign the local authority’s ‘Terms and Conditions' agreement in order to receive a Direct Payment.

You may be given conflicting information on what and how direct payments are  to be used. Seek advice if you feel that you are being treated unfairly since many families have different experiences and decisions that you feel are unfair may be open to challenge! 

Information for Service Users

Information for Service Users

The Information Sub-group of the Cardiff and Vale Unified Assessment Project has produced 4 leaflets:

  1. Unified Assessment – Helping you achieve a better quality of life. This is for all the agencies involved, i.e. Cardiff Council and the Vale of Glamorgan Council, Health boards, the Trust and other partners. It is aimed at anyone wanting to know about UA - not just service users. It is introducing people to Unified Assessment.
  2. Your assessment This is a joint Cardiff & Vale of Glamorgan local authority leaflet. It does not include Health or any other partner. It is for people about to undergo an assessment for social care needs.
  3. Looking after your social care information This is also a joint Cardiff & Vale local authority leaflet for people about to undergo an assessment. It  may also be used whenever the local authorities collect information (especially when seeking permission to share information) and service users have not already had a copy or have lost their copy and forgotten what it said.
  4. Community Care Services – A guide to social services for adults This is also a joint Cardiff & Vale local authority leaflet. It is for people undergoing an assessment or review.

To obtain copies of the above leaflets, please contact the Cardiff Learning Disability Team or Vale Community Support Team
Copies of these leaflets can also be downloaded from the Councils’ websites:

Where a Unified Assessment has identified an area of need that is eligible for services and which meets the Fair Access to Care Services eligibility criteria, the Local Authority will identify and propose a care package that is suitable and appropriate to meet that assessed need. However, if the service user does not want the package offered but wants another package instead, the Local Authority is not obliged to provide that other package

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