What does HAFS do?

What is HAFS and What Does it Do?

HAFS (Halton Autistic Family Support Group) is a community based voluntary support group that operates in the borough of Halton and has been granted Charitable status (10th June 2003). It was officially constituted in November 2001.

As there are currently no out of school services provided specifically for Autistic children or families in Halton, HAFS fills this gap in provision and provides a unique service. The Group meets at The Pingot Day Centre, Dundalk Road, Widnes, currently on a monthly basis, but soon to move to a fortnightly basis.

HAFS provides services to all members of the family unit in Halton who have a child or young adult with a condition within the broad range of ASD (Autistic Spectrum Disorders). HAFS is unique in this respect as most support groups either cater for the affected person or parents. HAFS brings together all members of the family including siblings and encourages each group to interact independently (as much as is possible) i.e. the siblings are encouraged to congregate separately in an area of the building so as to discuss the issues of living with an Autistic brother/sister and to offer each other support.

The parents operate in the same manner (where the affected children will allow) to offer each other advice and guidance on common problem areas and encourage and informally counsel each other. The Autistic children/young adults themselves are supervised and led in play/learning by paid carers bought in from Halton Crossroads and Primrose Care Agency who are police checked and experienced in caring for Autistic people plus family volunteers. The children/young adults are encouraged to develop social and communication skills and imagination through play/learning, addressing some of the primary issues around Autism.

A reference library is utilised to allow families to keep up to date with Autism issues, research information and personal accounts of living with Autism and general guidance information for parents and young people with ASD conditions.




A Helpline is operated (01928 711412) to provide information, support and guidance between the hours of 9 am and 5.30 pm currently on a Monday to Friday basis. This will be extended in the near future. In addition advocacy is provided to help families in dealings with local and national statutory bodies, particularly vulnerable families who may feel intimidated by the process. HAFS will represent them at all levels, typically in meetings with Education, Social Services, PCT or benefits departments.

Social and educational outings and trips are arranged throughout the year for the whole family unit and whole HAFS group, at no cost to the families. The main event is the very popular annual trip (September) to Pontins in Blackpool, where a full itinerary of activities is organised to fill the whole weekend.

Background To HAFS Formation – The Need

To fully plan and understand where The Group is heading in the future and why it needs to exist at all, it is important to understand the background to its inception, the relevant history behind it, how and why it was formed and where it is today in terms of development against the original expectations.

Autism is one of the lesser known and understood conditions and is often mis-diagnosed or not diagnosed at all. It is widely accepted as ”Severe Mental Impairment” and is a neurological condition that is often accompanied by a cocktail of other disabilities such as Epilepsy, Dyspraxia and in some cases Cerebral Palsy. There is a great deal of ignorance of the subject amongst the educational and medical professionals except for a few islands of knowledge that have had exposure to Autism. This is a national problem and Halton is no different in this respect except that it appears to be worse than the average in terms of service provision and seems to have a high Autistic population in comparison with other geographic areas.

Official figures suggest that there are 50 families in the Halton area with children officially diagnosed with Autistic Spectrum Disorders. HAFS believes that the figure is much higher (probably in excess of 100) given that:-

- there is currently no disability register in Halton and no strategy for disability although work has recently started on these issues

- only three full time Social Workers for all disabled children in the Borough

- due to a lack of resources and expertise, many children are completely undiagnosed, mis-diagnosed or just given a catch all category of “learning difficulties”

- these figures will not include adults (over 19) with late diagnosis

- many higher functioning Autistics (generally known as Aspergers Syndrome) slip through the net completely


- some parents are in denial, will not get a diagnosis and believe that their child “will grow out of it”. This of course is tragic ignorance as there is no cure or sudden shedding of Autism. If anything it gets worse if not addressed and appropriate support provided.

As a result, many families in the Halton area have struggled, under very stressful conditions, to try and get access to appropriate help and services. They often felt that they were on their own and in fact barriers are often put in their path due to a combination of ignorance, lack of human and financial resources and a lack of political will to address the problems and issues associated with Autism. Each set of parents/carers felt that they were on their own and just had to get on with it, without support and being kept in ignorance about their rights and what little assistance might be available to them.

There is no current provision for Autism specific services in Halton from either Health, Education or Social Services. This has been the main driving force behind the formation of HAFS. HAFS will be the main agent for change in addressing this vacuum in the Halton area.

The need for such a support group to address current priorities and plan for the future became very apparent and after several abortive attempts over the last few years, a few like minded parents got together, with the assistance of Halton Social Services - Children’s Services Department, in June 2001 to try and form a self help support group and met at Glendale Family Centre. More parents/carers were encouraged to join through word of mouth and advertising and eventually a Management Committee and a Constitution (including a set of aims and objectives) were officially approved on 29th November 2001. Immediate priorities were agreed as being raising awareness of Autism and of The Group in the Halton area and fund raising and grant application activities.

In the subsequent three years since formation, the Group has been very successful beyond its original expectations in terms of numbers, publicity and funding. The Group has over 30 families on its active member register (there are also an additional 20 families who have made enquiries with HAFS but who currently don’t feel able to attend meetings) of which approximately 20 are represented at each monthly meeting, now held in The Pingot Day Centre, Widnes on Thursday evenings from 7pm.

Parents/carers, siblings and most importantly the affected children themselves are receiving great benefit from being part of The Group. Guest speakers have provided a valuable insight into specific issues and problems surrounding Autism. Day trips and now weekend group outings to Blackpool have been organised to assist in helping social inclusion and independence training.

Partnerships have been set up, direct help and assistance, advice, guidance, general support, publicity and financial support have been received from various organisation including Halton Social Services – Children’s Services Department, Halton PCT, Halton Crossroads, Halton Independent Living Trust, Widnes and Runcorn Cancer Support Group, Halton Voluntary Action, Halton Carers Services, Halton Community Chest, Halton Neighbourhood Renewal & Voluntary Sector Fund, Halton Children’s Fund, The Children’s Local Network Fund, ZIFA Cares, Scottish Life Insurance, Halton Insurance Services, Getrag Ford Transmission (Hourly Paid Workers Group), Nexus Associates Ltd, Bernardos, Runcorn Rotary Club, The Beehive Public House (Hale), Glaxo Foundation, KPMG, Ineos Chlor, individual sponsors, the local newspapers and the general public of Widnes and Runcorn who have kindly contributed to our fund raising activities.

It should be stated here that HAFS receives no committed funding streams from any source currently. Running costs are covered from general fundraising activities and one off grant applications, The Big Lottery grant only covers the costs of employing the Development Manager, for a 3 year period.


HAFS Mission, Objects, Aims & Tasks

Mission

HAFS mission is to provide support and life enhancing services to help the children and young adults of Halton (and their families), affected by Autism. This involves assisting them to achieve their maximum potential for community involvement, social inclusion and the opportunity to access employment and other facilities enjoyed by other non Autistic members of Halton’s community.

Constitutional Objects and Aims

The stated Objects and Aims of HAFS (as per our Constitution) are :-

(i) To promote the relief of persons suffering with Autistic Spectrum Disorder by providing them and their families and carers with information, support and education
(ii) To provide or assist in the provision of facilities for recreation or other leisure time activities for Autistic children and their families with the object of improving their conditions of life.

Tasks

To achieve these strategic aims, a number of tasks to be achieved and initial service to be delivered have been defined as:-

- an opportunity for parents/carers and siblings as well as the affected children/young adults to meet up on a regular basis as self help and support group to each other, as a family unit

- badly needed social interaction/play opportunity for the able bodied brothers and sisters as well as the disabled to discuss how ASD affects them and to offer each other support


- parents/carers can discuss the experiences and problem areas encountered and support each other through the various hurdles that have to be overcome such as diagnosis, appropriate special school placement/Tribunal, respite, benefits, independence issues, planning for the future etc

- bring in outside help and advice from experts in the field, such as external organisations, service providers and professionals who have expertise in Autism.

- generally strive to raise awareness and support of ASD families in the Halton Borough area

- become an organised group and apply pressure on the officials of local and national service providers and statutory bodies to provide adequate support and services to ASD famili