CAPAAS. Children and Parents Asperger Autistic Support.
CAPAAS.(Children and Parents Asperger Autistic Support) is a parent run support group open to all. The group meets on the second Wednesday morning of each month at 10.00am - 12.00 noon. Also on the fourth Wednesday evening 6.30pm - 8.30pm (school term times only) . If you are unsure of term times, or indeed need more information please contact CAPAAS by email click here
Late September 2008 saw CAPAAS move into our own venue - CAPAAS Unit 10 Navigation Walk, Carre Street, Sleaford, Lincolnshire NG34 7TW. All thanks to funding from the Lincolnshire Community Foundation Fund, as well as support group meetings we hope to run art and social skills workshops for our youngsters and their siblings. Please contact the group regarding these activities dates and times. CAPAAS are currently working on a few projects for 2010, an inclusive community sensory garden, in conjunction with North Kesteven Girls High School follow the link here (currently unavailable, please check again soon) .
Another project is a proposal for a Community Enterprise Business which will be aimed at providing work for a small amount of people on the autistic spectrum. CAPAAS will also aim to protect any and all 'intellectual property' which require patents or copyrights of all CAPAAS members, parents and carers.
CAPAAS Mission Statement.
'It is the intention of CAPAAS (Children and Parents Asperger Autistic Support) to provide our target audience/membership with non-judgemental, supportive and authoritative information, delivered in both an informal and uninhibited atmosphere, thus giving our target audience/membership the confidence to make informed decisions about asperger/autism awarness needs/ provision in education, healthcare, sexual health, hygiene and relationships with others, benefits and housing'.
To download the CAPAAS membership details and basic information starter pack click here please note to recieve up tp date CAPAAS information membership details must please be completed in full. Please note due to many requests by CAPAAS members and indeed the general public who wish to support us we have now placed here a PDF version of our volunatary standing order form. As such we would like to thank everyone for their help and contributions without which our work would be that little bit harder- many thanks for your contiued support.
dowload our support group newsletters CAPAAS Newsletter September no1.
CAPAAS Newsletter no2.
CAPAAS Newsletter no3.
CAPAAS Newsletter no4.
CAPAAS Newsletter no5.
CAPAAS Newsletter no6.
CAPAAS Newsletter no7.
CAPAAS press releases/interviews
Exclusions are a particular concern to CAPAAS members, as such and through their constructive partnership with TreeHouse CAPAAS have complied The Parent's Exclusion Form which helps parents and carers maintain a record of their child’s exclusions – including middle of the day exclusions or ‘informal’ exclusions which are illegal. The questionaire/form encourages positive discussion between the parent and the school and can be used in an annual review, to help identify triggers for a child’s behaviour.
CAPAAS in conjunction with the National Autistic Society are hosting the following: help! 2 seminars.
February 26th 2010.
Meeting your child’s sensory needs
A chance to explore the effect the world has on your child’s senses and using activities that can help them deal with this.
The seminar is aimed at parents/ carers of people who have a diagnosis of autism, Aspergers syndrome or ASD.
Seminar delivered by Lorraine MacAlister, help! Programme Officer
Friday 26 February 2010 - 10.30 am – 2.30 pm
New Life Conference Centre, Mareham Lane, Sleaford
March 04th 2010
Anti-bullying support & strategies for your child with ASD
This seminar looks at the characteristics of ASDs and how these might make children affected more vulnerable to bullying. It helps parents/carers gain a better understanding of the types of bullying that might occur and allows them to share tips and strategies to reduce it.
Seminar delivered by Lorraine MacAlister, help! Programme Officer
Thursday 4 March 2010 – 10.30 am – 2.30 pm
New Life Conference Centre, Mareham Lane, Sleaford
Many parents and carers of children with Specail Educational Needs in Lincolnshire have very little if any faith in the SEN system in Lincolnshire, brought about by a long and drawn out SEN review and the final decision made today by Lincolnshire County Council to delegate funding to schools.'If the Local Authority aims to delegate as much of the SEN budget to schools as possible to give schools more flexibity in making SEN provision, in doing so is the Local Authority also shifting its statutory responsibility onto the schools'? The rushed way in which Lincolnshire Local Authority are aiming to rush this through leaves parents and indeed carers of children with SEN asking the following question "without a good plan and procedure in place which includes adequate training for all are we setting our children up to fail"!
As parents we accept in theory that with the correct plans in place then this could work, however currently with little or no training in place and a system which is failing at present, parental involvement is needed to show that within the county of Lincolnshire 'Every Disabled Child - Does Matter! If you are unhappy with the proposal register your concern on the petition site at the following address
News...'National scandal' of postcode lottery for autistic children
Parents of children with autism face a postcode lottery which amounts to a "national scandal", author Nick Hornby said today.
The author of About a Boy said he faced a "total lack of information and advice" when his son Danny was first diagnosed with autism, and little had changed.
One in 10 parents of children with autism have moved house to access better services and many others are left feeling isolated, confused and judged, a survey by autism education charity TreeHouse found.
Mr Hornby, whose son attends a TreeHouse school in north London, said: "When my son was diagnosed with autism there was a total lack of information and advice on what we should do next.
"It seems that little has changed - and that is a national scandal."
The average age of diagnosis varies from under three years to as old as seven years depending on the local authority, information released under a Freedom of Information request by the charity found.
TreeHouse said this could make a "dramatic difference to a child releasing their potential".
The figures, which were compiled from replies from 37 local authorities in February, also showed nearly a quarter (24%) of local authorities did not know how many children with autism were in their area and more than half (54%) said they did not know how much money they spent on children's autism services.
It also showed 81% did not have a dedicated employee looking after services for children with autism and 70% could not give specific details on what autism-related training they provided for teachers in state schools.
A separate survey by the charity also found that while one in 10 parents had moved house to access better services, a further 30% of parents said they would consider doing so.
A total of 90% of parents said they felt "isolated" by their situation, 85% felt "judged" and 78% said they did not receive enough support.
Ian Wylie, chief executive of TreeHouse, said: "These findings reveal a shocking lack of consistency in how local authorities support children with autism and their families, most clearly borne out in the dramatically different ages at which a diagnosis is made.
"There is also an inexplicable lack of knowledge about even the most basic facts on the size and scale of the issue in many areas.
"Given how much of a postcode lottery there is across the UK, it's not surprising that the parents we've spoken to feel so isolated and confused."
TreeHouse, which launched a new website - www.talkaboutautism.org.uk - today to mark UN World Autism Awareness Day, said autism now affected one in 100 children in the UK.
:: TreeHouse made the Freedom of Information request to local authorities around the UK in February 2009 and received responses from 37 local authorities. The charity also surveyed 102 parents of children with autism from its database.
News....'This is a huge step forward' 'Autism bill published'
The autism bill published today promises a brighter future for thousands of people, says Mark Lever, chief executive of the National Autistic Society. The first law to help people with autism came a step closer to reality today with the announcement that Cheryl Gillan MP (drawn first in the private members' bill ballot) will take forward the autism bill with the backing of 14 autism charities, including ours, the National Autistic Society (NAS). This is fantastic news for the over half a million people in the UK and their families who are affected by this serious, lifelong and disabling condition. For more on this story click here
December 2008 - The 'Walk in Our Shoes' Autism Awareness Event' update.
Friday 5th December, Douglas Hogg QC MP for Sleaford and North Hykeham spent time with parent/carer members of CAPAAS hearing for himself of the challenges that our families face and also the sinificant contributions that children and young people with autism can make when they have access to appropriate education and support.
Throughout the day in other areas the Walk In Our Shoes event gave key decision makers the opportunity to spend time with families affected by autism in their homes and in their communities.
Some of the members of CAPAAS, at the 'WALK IN OUR SHOES' event attended by the MP Douglas Hogg QC,MP who supported us well at the event. We would like to thank Douglas for the understanding and help he has offered to us during the event. Douglas has agreed to assist us again by arranging a meeting with Heads of service and portfolio holders for the county so we as a group can be heard.
Walk In Our Shoes aim was to promote a greater awareness and understanding of autism amongst policymakers and the public, as autism now affects 1 in 100 school aged children in the UK. It’s fantastic that so many MPs and Councillors got involved. TreeHouse the national charity for autism education, and all the participating Parent Support Group members hopes that events like this will pave the way towards all children and young people with autism getting the education they need and their families receiving the support they deserve.
November 2008 - The 'Walk in Our Shoes' Autism Awareness Event
The ‘Walk In Our Shoes’ autism awareness event takes place at the beginning of December. Parents and carers have invited key influencers such as MPs, councillors, and local authority officers to spend some time with them and their families. Some families are planning for key influencers to accompany them on a trip to the supermarket, the library, or on a walk home from school. The aim of the event is to promote awareness and understanding of autism, which affects 1 in 100 school aged children. Participating in this event will provide local decision makers with an insight into the complexities of daily life for families of children and young people with autism.
MPs , councillors and others will be able to understand the barriers that children with autism often face, as well as the positive aspects of autism. Parents and carers hope to highlight the significant contribution that children and young people with autism can make to society when given the correct education, support and guidance.
Through ‘Walk In Our Shoes’ key local decision makers will see for themselves simple changes in attitude and behaviour can enable children and young people with autism to fully participate in society as equal citizens.
The event will run from 1 December 2008, to coincide with ‘International Day of Person’s with Disabilities’ and hopes to mobilise support for the dignity, rights and well-being of children and young people with autism and their families.
August 2008 - Parent Support project launch National Survey
The Parent Support Project is re-launching its national survey to capture parents’ views of autism education locally and nationally. The national survey asks for the views of parents and carers on aspects of provision for children with autism. This information will be used to inform electronic reports, showing how each of the ten project local authorities are performing against the national picture.
The survey has been re-launched in an electronic format. The greater survey responses received from each project area (Birmingham, Ealing, Havering, Lambeth, Lincolnshire, Medway, Oldham, Poole, Redcar and Cleveland, Staffordshire) the richer and more representative the statistical data collected to inform the reports will be.
Please visit Survey Monkey to complete the survey for your Local Authority area.
All parents who complete the survey will be entered into a prize draw to win a copy of ‘Constructive Campaigning for Autism Services – the PACE parents handbook’. In order to enter the draw parents must answer the first question on the survey so that they can be identified. This question is optional and these personal details will only be used to identify the winner of the draw.
The deadline for responses is Friday 5th September 2008
July 2008 - Parent Support Project presentation well received by the Department of Children, Schools and Families!
The TreeHouse Constructive Campaigning Parent Support Project (PSP) and Director of Development and Public Affairs gave a 40 minute presentation to the Special Educational Needs and Disability Division at the DCSF on 9 July 2008. The presentation was given to 20 team members, and included Deputy Director Hardip Begol, Nigel Fulton the Team Leader for SEN Framework and Data Team.
The PSP is a three year project which is supported by the DCSF and other funders until 2009. The project team is working with ten parent and carer groups in different local authorities across England, supporting them to devise and deliver constructive campaigns, and put them at the centre of improving autism education.
The presentation included video footage of Steve McGuinness, lead parent for the Lincolnshire support group CAPAAS; and Gayna Simmonds, lead parent for the Medway support group MAGIC. This footage allowed parents to express ideas and opinions of different constructive campaigning techniques, and how employing them locally has affected their relationships with the Local Authority.
The presentation was well received by the DCSF audience, and was followed by a question and answer session. The PSP team are now looking forward to the third and final year of the project and to supporting empowered and sustainable parent campaigning groups.
Children and Young People Now article featuring CAPAAS!
The latest issue of Children and Young People Now includes an article on the Constructive Campaigning Parent Support Project, featuring both CAPAAS and RAGS. The TreeHouse Constructive Campaigning Parent Support Project is highlighted as a successful model for parent participation, which contributes to the level of parents' confidence in the Special Educational Needs system. The article includes examples of successful constructive campaigns in both Lincolnshire and Havering, and interviews with the group leaders Steve McGuinness and Anne Myatt. Please read the full CYPN article for more information.
Children and Young People Now - A Draft Report on Special Educational Needs Services in Lincolnshire
An interim report for special educational needs (SEN) services has been produced for Lincolnshire. The report covers the SEN provision available within the county, and evaluates whether this provision is meeting service user needs. Councilors are due to meet in order to discuss the report's findings. Please read the full article for further detail.
Lincolnshire Echo on County school funding
Following a review of Special Educational Needs services in Lincolnshire, the Lincolnshire Echo have a piece on how much funding is available to school pupils within Lincolnshire county, and how this compares to the national average. Please read the full article for more detail.
Lincolnshire Local Authority Review Special Education Needs Provision
Lincolnshire parents and carers are thrilled their local authority is carrying out a major review of the education provision for children with Special Educational Needs (SEN), which will include children with autism.
For the past year CAPAAS members have been working closely with the TreeHouse Parent Support Project (PSP), to campaign for better autism provisions and resources within the Lincolnshire local authority. This review represents a step forward in highlighting improvement needed in the areas of autism education.
Steve McGuinness, group leader for CAPAAS, understands how difficult life can be for children and young people on the autistic spectrum. He said: “We at CAPAAS are very pleased Lincolnshire is holding a review of education provision for children with autism and other disabilities. Many children and young people with Asperger Syndrome or autism have difficulties with communication and forming relationships. This can have a huge impact on their education in terms of academic progress and developing friendships with other children at school.”
David Bennett, Chairman of the review group, was quoted as saying: “One parent said it had been generally a very difficult ride having two autistic children but she said that by far the most difficult times have involved their education.”
This has certainly been the experience of Mary McGlaughlin, one of the committee members of CAPAAS. Mary said: “My son has Asperger’s Syndrome which is a form of autism. He used to attend a mainstream school with the help of a learning support assistant; however it wasn’t right for him. The local Parent Partnership service was very helpful and arranged with me for my son to move to a local special school. He is much happier now.”
CAPAAS and the TreeHouse PSP will eagerly await the findings of the review, and hope it will lead an improved autism specific approach to education within the area.
Lincolnshire Local Authority undertake consultations on SEN services
Lincolnshire Local Authority held consultations to take into account views of parents and carers during a review of special educational needs services in Lincolnshire. The consultation events held on 23rd and 24th April 08, were well attended by a mix of parents and professionals, including local authority members and councillors.
Parent participation is increasingly recognised as a route to providing responsive services better matched to the needs of service users. It is widely acknowledged that parents and carers are experts in their child’s individual disability. The parents and carers attending these consultations were passionate, well informed, and articulate in sharing their views and experiences.
The theme of the event was reducing reliance on the Statementing process, as a mechanism for ensuring that children with hidden disabilities such as autism get the support they need and are entitled to.
Peter Broster Head of Additional Needs said “Lincolnshire county council are determined to ensure children with autism get the best start in education, by providing them the support they need to enjoy and achieve within school. The consultation program will hopefully inform the council on improving services for children with disabilities living in Lincolnshire”
Lincolnshire local authority are considering reducing reliance on the Statementing process, for children in bands 1, 2 and 3 (equates to 7 hours of support per week), as part of the county wide Lincolnshire SEN review.
Steve McGuinness CAPAAS group leader said “It was clear from the consultations parents are frustrated at existing provision, therefore suspicious of any proposed changes. CAPAAS members are encouraged that the consultations have taken place, and are keen to work closely with the Local Authority to achieve transparency and accountability”
RAF man Jack to swim the height of Everest for CAPAAS.
Flt Sgt Jack Harmer, a deputy flight commander in charge of training RAF Regiment cadets at RAF Cranwell, told the Sleaford Standard: "My knees and lower back are shot from 28 years in the RAF Regiment, so I took up swimming in my lunch hour.
“Then I thought the support group CAPAAS - Children and Parents Asperger Autistic Support Group, and was set up just over a year ago by Mr Steve McGuinness.
The 45-year-old flight sergeant came up with the idea of swimming the height of Everest – 8,840m from base to summit, which equates to about 5.53 miles.
He said: “The pool at Cranwell is 25m long so to reach the top I will have to swim 354 lengths.
“I have been training really hard for this because over such a distance you have to take on extra fluids and salts to stop cramping up. “
Flt Sgt Harmer has also persuaded his squadron of 120 cadets to select the cause as their chosen charity. In total, he and the cadets hope to raise around £7,000. The cadets will be cheering him on as he goes for the magic five and a half miles. The swim starts at 1pm on January 30th 2008.
CAPAAS is a Sleaford/county wide support group for parents of children with Asperger’s Syndrome or autism. It was set up in May 2006. You can find out more about the support group on its website at http://www.colour-se7en.co.uk or by calling 07948 420641.
Steve went on to state 'Taylor my son, and myself went to see Jack complete this mamoth task, it was made even more special when the big boss asked that the people taking part in competitions stop while the whole place encouraged Jack to reach the summit, this man focused on task even though he was tired and followed through he is a credit to himself ,the RAF Regiment and the RAF as a whole.
EDCM Local Authority Charter
English Local Authorities can get involved in the Every Disabled Child Matters campaign by signing up to the EDCM Local Authority Charter. The Charter, produced with the support of Children Now magazine, encourages local authorities to commit to providing a range of services for disabled children and their families by January 2008, and also to addressing the needs of disabled children in their strategic planning and local area agreements.
63 English Local Authorities are currently signed up to the charter. These include six of the areas covered by the Parent Support Project - Ealing, Lambeth, Lincolnshire, Oldham, Poole and Staffordshire. We are delighted that Lincolnshire Local Authority has committed to the charter, as it represents an important step in championing the rights of both disabled children and their families. We encourage parents in the remaining four areas covered by the PSP project to contact their local authority to sign the charter, and push for its successful implementation within their area.
For information on how to contact your Councillor to support the EDCM campaign please visit the EDCM website.