Shine Ireland - The Autism Charity

We have received a huge amount of telephone calls and emails from parents on this matter. It is very clear that many parents with newly diagnosed children, who want an A.B.A. education for their children are very worried and angry. The prospect of these 'A.B.A.' pilot projects being turned into 'special schools' abandoning their A.B.A. ethos and thereby removing any chance for the parents of newly diagnosed children getting an 'A.B.A.' education is terrifying. This 'deal' being considered by the various Board's Of Management of these pilot schools should be rejected. Whatever your views on A.B.A. parents should always be given choices on the type of education their A.S.D. child will receive. To accept the Department's offer now is denying young ASD children the benefits of an A.B.A. education. Acceptance of deal removes choice.

This deal reduces the role of ABA tutors to that of Special Needs Assistants (S.N.A.'s). We are all very aware of the wonderful job that SNA's do for so many children but an ABA Tutor offers a completely different skill set. The Department of Education and Skills in their own literature states that S.N.A.'s have NO educational role in the classroom. Considering that many ABA tutors are highly qualified, many with Masters degrees etc , are being reduced to role of care worker is insulting. If one's believes in ABA one cannot have anything but highly qualified staff, knowledgeable in all aspects of A.B.A.. This expertise cannot be gained overnight, or via some short course. It takes years! For parents of ASD children in Ireland today the thought that all of this expertise can be abandoned is indeed terrifying and incomprehenable.This proposed Deal , if accepted, it signals the end of ABA in this country.

Shine/IPAA fully supports the campaign to save ABA schools in Ireland, not just for the parents whose children attend these schools now, but equally important, the many hundreds of parents who would like their children to have the choice of an ABA education now and into the future. To accept the D.O.E.S. deal now denies an appropriate education to many children with autism into the future. This deal must be rejected.

The Shine Friday Club had a great time surfing in Garretstown with the Gtown surf school before their Summer break. So much fun was had that we will have to go back for some more surfing very soon!

(The reality of the situation and the real question that needs to be asked).

Minister for Education and Science, Batt O'Keefe, has come in for a lot of criticism recently regarding cuts in Special Needs Assistants(S.N.A.'s). Following the strict criteria set out for S.N.A.'s ,the Minister has maintained that "any child who needs a special needs assistant will get one." Parents of children who are loosing an S.N.A.'s are angry and they are obviously very aware of the many benefits having an SNA for their child. Many of these benefits do not fall within the criteria/job description of an SNA. It is a situation which is common practice in system which everybody knows goes on, but officially everybody turns a blind eye to.

Minister O'Keefe continually emphasises the 'care' role of an S.N.A. The parent continually emphasises the educational benefits their child gets from having an SNA. The department of Education and Science in their literature spells out nine key duties of an S.N.A.

They are:
1. preparation and tidying up of classroom in which the pupil with special need is/are being taught.

2. Assisting children to board and alight from school buses. Where necessary travel as escort on school buses may be required.

3. Special assistance as necessary for pupils with particular difficulties e.g. helping physically disabled pupils with typing or writing.

6. Assisting the teachers in the supervision of pupils with special needs during assembly, recreational and dispersal periods.

7. Accompanying individuals or small groups who may have to be withdrawn temporarily from the classroom.

8. General assistance to the class teachers , under the direction of the principal, with duties of a non teaching nature.(S.N.A.'s may not act either as substitute or temporary teachers. In no circumstances may they be left in sole charge of a class).

9. Where a S.N.A. has been appointed to assist a school in catering for a specific pupil, duties should be modified to support the particular needs of the pupil concerned.

Parents , when questioned about the benefits of S.N.A. to their child will stress the educational benefits they get. In the vast majority of cases S.N.A.'s do have educational inputs in classroom. The department and teacher unions choose to ignore this fact because it suits their various agenda's. This is why their is so much annoyance and real anger expressed by parents.

Schools that have a good record of dealing with special needs children invariably include all interested parties in a coordinated team approach. This involves the parents, principal, teacher/s and sna's. The best run ASD classes and units include S.N.A.'s in all aspects of child's education. In the classroom ,the teacher delegates certain educational duties to S.N.A.'s , which they then monitor and have continual input on. All of this run contrary to department's definition of SNA. In regular classes , whose sizes have increased ,it is grossly unfair to the classroom teacher to be expected to do all of the required work with a special needs child. It is also grossly unfair to the special needs child if he/she does not get the individual attention they require. Of course none of this can be officially acknowledged as teachers unions only want 'qualified' teachers doing the work(they naturally want to protect their members monopoly on education and therefore entitlements, pay etc)and department is afraid to go against the unions for fear of upsetting them any further and also because many of decision makers within department come from teaching background. It also suits the Minister and his government, in these economic challenging times to ignore the real educational needs of special needs children in the classroom and hide behind the shield of addressing the care side of things. An Irish solution to an Irish problem.

The real question therefore is , What is the role for S.N.A.'s going forward?

If the Minister is going to stick with strict criteria /job description of the S.N.A. then this problem is never going to be solved. If Teacher unions are unable to accept that 'non qualified' people can also have an educational role in classroom then we are also never going to get this situation solved. There is a 'care' need for certain special needs children in classroom, there is an even bigger need for improved educational supports for special needs children in the classroom. Combined with this the government needs to put appropriate, problem solving training in place. At present the real training needs of teachers, regarding special needs children is not been provided. Classroom teachers need solutions to problems their encounter in the classroom , they have enough on their plate already. Talk to teachers who deal with special needs and they will tell you they do not have the skills to cope and all the training they receive is theory based. Added to this large class sizes is extremely frustrating for teachers, because they know they cannot give the 'one to one' time they should to certain children.

Politicians talk about inclusion for disabled children in our education system. The present situation is only re enforcing exclusion. Parents know what they want for their special needs child; an appropriate, adequate and inclusive education. The Minister, government and teaching establishment appear to want to ignore their needs. The protection of the system is more important than the outcomes. Is it any wonder that parents are so confused, annoyed and frustrated.

Kieran Kennedy
C.E.O. Shine/IPAA

By Kieran Kennedy CEO - Shine/IPAA

Last year was marked by severe reverses for the autistic community in Ireland. Promises of planned , progressive improvements have been laid to rest by government . We have seen benefits cuts, by overt and covert means and educational services curtailed. Respite and residential services have not progressed, even though the demand is increasing and day services will see huge negative changes in the year ahead. As ever , the severe economic downtown has hit the disabled community first.

There is however, grounds for hope for 2010. When the economy takes a downturn there is an urgent need to examine how public monies are spent and how they deliver value for money. The voluntary sector, in general, always looks at how to provide services at the lowest economic rate and give the best possible return on monies spent. The public sector , in general , has proven to follow the exact opposite( there are exceptions of course). The specter of individualised funding is one way that progress can be made, even in economic challenging times. It is already working in other countries and can provide a template to this government on how to spend limited resources going forward. The other benefit is the elimination of poor services in favour of good ones. If implemented correctly large sums of public money need no longer be used up on a bloated public disability administration.

As the publicly provided services disappear under government cutbacks the voluntary sector needs to be able to pick up the pieces. Autism groups throughout the country need to find ways of working together more efficiently. They need to develop new and imaginative ways of raising monies. Above all, they need to refocus ways in which they can work locally together to protect and increase services. Shine/IPAA will over the next twelve months forge much stronger links with other groups to progress the needs of autistic persons and their parents. We have throughout last year cut all identified wastage out of our budgets and , thankfully we enter 2010 on a very sound economic footing. Credit for this should go to all of our extremely dedicated staff who have reduced their costs without reducing our levels of service and in some areas we have increased the numbers of children in some schemes during 2009. The reason is simple all of our staff have gone the extra mile and given extra time right across the services offered by Shine. My sincere thanks to one and all.

SHINE/IPAA will face various economic challenges throughout the next twelve months and we look forward to working with all our members and friends to ensure that we overcome them. As stated above , the demand for services will continue to increase and we will try to meet those demands as best we can. We already know that all government grants will be cut for the year and this will create problems for us, but we also know we cannot abandon parents and their autistic children . As a united team, parents, staff, friends and supporters we can , and will, come through this year stronger.

My sincere thanks to all our volunteers and fundraisers for all their work over the last twelve months. Your work and effort and sacrifices on behalf off the organisation is greatly appreciated. I hope all have a happy, rewarding and above all peaceful new year.

Kindest Regards
Kieran Kennedy
CEO
Shine/IPAA

TRAINING DATES 2010 UPDATE

Training Dates:

2010 Training Course Dates Now Available For First Steps In ABA & Managing Challenging Behaviour... Click Here

“Where do I begin?”

Introducing your child to his/her Diagnosis of Autism or Asperger Syndrome

By : Laura Crowley Educational Support Service - Shine - CLICK HERE TO READ

For many years now the Shine/IPAA has been fielding calls from Primary schools around Munster. The purpose of the calls varied greatly. Some schools sought simple information about ASD, while others were crying out for help and guidance. As a result of this, the Shine Educational Support Service was founded.

The aim of the service was simple, to ensure positive outcomes and full inclusion for children with an ASD diagnosis in our mainstream schools.

On sight classroom observations and consultations – This is the main focus of our service. In partnership with home and school we strive to ensure the optimum supports and appropriate autism specific techniques are available for the child. We work extensively with teachers, SNA’s and resource teachers to devise strategies for each child, while ensuring that each strategy is individualised to ensure optimum outcomes for the child.

School advice
Educational advice for parents
Workshops/ information evenings for professionals
In house presentations for schools (both Primary and Secondary Level)

Over the first three years of this service, we have successfully liaised with over 35 schools in the Munster region, stretching as far as Tipperary and Limerick, reaching in excess of 70 children. Some schools simply require one consultation, while others receive continuous guidance on issues ranging from communication difficulties, to behavioural issues and social skills.

In our experience, the most common difficulty faced by children in schools is behaviour management. With individualised interventions, full partnership between home and school, and support and guidance for the individual these issues can be resolved, resulting in a positive outcome and continued placement in mainstream education.

The second most common area of difficulty is social skills. Although this can be a tough skill for children on the spectrum to grasp, there are definite ways in which we can foster social skills development and encourage the children to engage in the social world around them. We are currently looking into some new and exciting social skills training initiatives in partnership with one school in the Cork area, and if this proves successful, we will spread the information to other schools.

The scheme is run by Laura Crowley, and has proved to be an enormous success. The following is feedback received from the Resource Teachers in St. Anthony’s Boys National School, Ballinlough, Cork.

“Laura has provided an invaluable service to St. Anthony’s BNS for a number of years. She offers practical advice on behavioural, sensory and social integration issues for a number of pupils on the autistic spectrum in our school. She liaises regularly with ourselves and parents in devising individualised programs for these children. Her contribution is always pragmatic and appropriate to the inclusive school environment and her knowledge of ABA techniques and experience of working with children with ASD means that she often brings fresh and creative ideas to the table. Her suggestions have proved hugely successful for a number of children and we look forward to her continued assistance and involvement going forward”

If you like more information regarding the Education Support Service, please contact Laura Crowley on 021-4377052 or alternatively by email laura.crowley@shineireland.com

The transition from Primary to Secondary School can be difficult for any child, but it can be extremely stressful for a child on the Autistic Spectrum. There are many changes which a child has to cope with during the transition period. These include:

In an effort to alleviate this stress, there are a number of steps that can be taken before, as well as during the transition. The following tips and strategies may not suit every child on the spectrum, as every child has their own distinct needs and learning styles. However, as a parent, you know your child best, and will be able to pick the strategies which will best benefit your child. If you are a teacher, or Special Needs assistant, it may take some time to figure out the best strategies for your new student.

The majority of students with autism will benefit from seeing, experiencing and learning about their new school before they turn up for their first day. The most obvious way for them to preview the school, is to actually visit.

During this visit, you can make the child familiar with the route to the school, the layout of the grounds, the teachers, the Principal, and even the SNA if possible.

If it is not possible for the child to actually visit their new school, there are a number of other ways that they can "pre-view" their school.

Probably the most important thing your child will have to learn is to navigate the school. Providing a map which the child can refer to is a great help. The map should have as much detail as the child can comprehend, and various landmarks should be clearly labelled e.g. cafeteria, library, home room, toilets.

It is advisable to spend some time going through this map with the child. When the child starts school, orientation utilising this map will be essential. Some schools offer Buddy systems and this is an ideal opportunity for the buddy to help the student.

Unlike Primary school, it is usual in Secondary school to change classes up to nine times per day. The timetable will be an essential tool in helping the child to access their lessons. Although it can look like a complicated document, there are a number of ways to simplify it.

Ensure that the child has all stationary which is required, and spares in case of loss or damage.

A clear pencil case with 2 compartments can ease access to pens etc as the items are visible through the case. A pen, pencil and rubber should be kept in one pocket of the case and the other items placed in the second compartment.

Encourage independent skills wherever possible. Suggest the child packs their bag for school the night before. This will allow the child enough time to organise their belongings, and you can do a quick check to ensure everything is accounted for. Praise for any emerging independent skills is essential, so remember to tell your child how proud you are.

Ensure your child knows your mobile/home phone number and address in case of emergency. A simple card can also be placed in their wallet/ purse to remind them of essential information. www.ucardit.co.uk make cards for this exact purpose. All relevant information about your child can be placed on the card, as well as emergency contact details.

Make homework part of your child’s routine, and to help with organisation, construct a visual daily planner/timetable. A quiet space should be available for them to work in, preferably away from television and other distractions. Make sure all homework is labelled with the date and title, and their name if it is a loose sheet.

A smaller version of the original map can be attached to the child’s school diary, as well as the amended timetable. The TEACCH program recommends that giving the child clear and simple instructions to help them cope in certain situations. These instructions can be attached to the back of the diary and can include things like "what to do if you lose your bus money". These simple instructions can help to alleviate stress and guide them through the appropriate course of action. You may also like to specify a key person that the child should locate should they require help at any stage. This can be a teacher, a buddy, or their SNA.

The SNA should check daily that all homework has been written into the diary, and should also use the diary to notify parents of upcoming events which they may need to prepare the child for e.g. visitor to the school, school mass etc.

To enable the child to learn independent homework skills, get the child to tick off or highlight homework in their diary as they complete it. This will show them how much work they have completed and also serve as a reminder for the work left to complete.

Please remember that break and lunchtimes (before and after eating) can be problematic due to their lack of structure, as well as high levels of noise and movement. Also, due to the very nature of ASD, social situations such as these can sometimes cause high levels of stress. Many pupils will benefit from a quiet place being made available for the student to retreat to, should they feel they need a break.

Before the child begins in the school, it may be of benefit to compile a sensory passport for your child. On this you can include their likes and dislikes from their sensory profile e.g. John can be sensitive to certain sounds, but he likes music. Arming the support staff with this information can allow them to be pro-active and help your child avoid unnecessary stress.

It is vital that you inform staff of any dietary restrictions your child may have. You may also need to explain in detail which foods the child can and cannot consume e.g. can have the ready salted walkers crisps, but no other flavour.

Never underestimate the importance of effective communication. Identify a way to keep lines of communication open with the school. For some parents, a regular chat with the SNA or year head may be possible. However the easiest method is probably a communication book between home and school. This book can serve two purposes. It can inform you of progress or difficulties that your child is experiencing within the school day, and it can also allow you to communicate events which may impact on your child’s behaviour and concentration during the day e.g. lack of sleep, illness, family events.

As a parent/carer you know your child best, so follow your instinct. If you find something that works, then use it with confidence and don’t be afraid to share your findings with the school staff. Open communication and partnership between home and school will ensure the transition from Primary to Secondary school is smooth, and causes as little stress as possible, for your child and you!

Kieran Kennedy - CEO Shine-IPAA - June 2009

The D.C.A. was until recently administered by the Health Service Executice(H.S.E.),but is now administered by the Department of Social and Family Affairs. Eligility for the D.C.A. is "determined by reference to the degree of additional care and attention required by the child rather than the type of disability involved(Department of Health and Children July 26th 2002).Qualification for allowance , as stated on Departments website are summarised under five points:

a. Providing for care of CHild.
b. Child will need continuous care and attention for at least 12 months.
c. Child resides in state.
d. Child normally lives with Claimant.
e. Child is not detained in a children's detention centre.

The new form for D.C.A. available from depatment is distinctly biased towards physical disability and biased against intellectual disability. This runs contrary to to previous stance from Department of Health and Children that disability type is not primary reason for being awarded D.C.A.

In the ten plus years that we have been dealing with parents of autistic children we have not come accross a case involving parents of autistic children being refused D.C.A. Since the beginning of April of the year we are getting two or three cases a week. We recently obtained figures form the Department of Social and Family Affairs covering the period April 1st to May 22nd which show that of the 249 processed cases in this period 149 have been refused. That is over 50% rejection rate. Is this 'stealth cuts' by the department?

Changes in criteria is a very underhand way of department to introduce cuts without Minister having to announce cuts against the most vulnerable in society. Considering the Minister of the Department is on record as stating how families of Autistic children have enormous extra pressures put upon them it is very worrying to see the Department of Social and Family Affairs bringing in these back door cuts.

Articles will appear in the Irish Examiner over the next few days on this subject. We urge all parents of autistic children to keep an eye out for these articles and make you thoughts known to the Department and especially the Minister. Please note changes are also being planned in other allowances and grants.

We are actively looking at ways to curtail or stop these cuts and have been for a number of months. This government will not be allowed to quietly erode our children's entitlements and services. Parents must be alert to actions of government and DEMAND that most vulnerable in our society are not the ones to pay for government's incompetence in running economy of Country over last few years.

Shine are planning to hold two Summer Fun Clubs during the month of July 2009. The Fun Clubs are aimed at children between the ages of 5 and 8 years of age and will be held at the Shine Centre in Carrigaline. Number will be limited to 6 children per Club and places will be allocated on a first come first served basis.

One of the main emphasis in the Clubs will be socialisation with the children being encouraged to fully take part in the activities with their peers. For more information on the Summer Fun Clubs please contact:

Kieran Kennedy CEO of Shine/IPAA recently attended this conference in London and the following are both details of the event and his comments on the topics discussed.

HOW SHOULD WE ADDRESS DISCRIMINATION AND DISADVANTAGE SUFFERRED BY PEOPLE WITH AUTISM?
HOW SHOULD WE IMPROVE EDUCATIONAL FOR ALL CHILDREN WITH AUTISM?
HOW SHOULD WE ENSURE THAT PEOPLE WITH AUTISM DON'T FALL THROUGH THE CRACKS OF SERVICE PROVISION?
HOW SHOULD WE BEST TACKLE POSTCODE LOTTERY OF PROVISION?
HOW SHOULD AGENCIES OF SOCIETY WORK SEAMLESSLY TO MEET THE CHALLENGES ?
HOW SHOULD AUTISM BE BUILT INTO STRATEGIC PLANNING?
HOW SHOULD LAW AND GOVERNMENT POLICY BE STRENGTHENED?
HOW SHOULD LOCAL GOVERNMENT LEAD POLICY THROUGH PARTNERSHIP ARRANGEMENTS MORE EFFECTIVELY?
HOW SHOULD THE N.H.S., POLICE , EDUCATION AND OTHER AGENCIES PERFORM MORE EFFECTIVELY?
WHAT REGIONAL SUPPORT IS REQUIRED FROM GOVERNMENT IN TAKING FORWARD GOOD PRACTICE?
WHERE CAN WE HOPE TO BE IN TEN YEARS TIME?

PATIENCE WILSON, DEPUTY DIRECTOR OF INDEPENDENT LIVING PROGRAMME, DEPARTMENT OF HEALTH.

PROFESSOR TONY CHARMAN, CHAIR IN AUTISM EDUCATION, INSTITUTE OD EDUCATION, LONDON.

CHRIS AUSTIN, LIVERPOOL TEAM MANAGER & SPEECH & LANGUAGE THERAPIST, MERSEY CARE H.H.S. TRUST.

1.Attending this conference highlighted the fact that the U.K. has progressed much faster and further in Autism provision and planning than Ireland. Pravalence rates in U.K. are accepted now as being one in every hundred(1:100). That means 1% of population is on ASD spectrum, a fugure in excess of five hundred thousand people.

2.Individualised funding is now gaining acceptance as a way to provide services to the individual. This should be accompanied by proper resourced and staffed localised intervention teams to support people on spectrum. Like Ireland the U.K. suffers from 'postcode lottery' effect when it comes to services, but central government(U.K.) is slowly trying to improve this situation.

3. National Audit Office, in U.K., will present report/audit to parliament in April 2009. This audit report will make very interesting reading as it will highlight both good and bad use of(a) public monies and (b) good and bad practice. It will also highlight how public monies can be best spent going forward.

4. Fully intergrated service provision needs to be provided for adults. When this happens the benefits can be huge. Merseyside Care NHS Trust was used as a very good example. Others were also provided.

5. With regards to ASD teenagers and adults fully intergrated justice, probation and support neds to be put in place. Awareness of autism in U.K. with regard to above mentioned areas needs to be greatly increased and further training needs to be carried out. ASD persons coming into justice system need to be dealt with differently.

6. The Welsh assembly has adaopted a ten year strategy for autism. This strategy involves all associated areas~(governmet bodies and agencies) and stakeholders, parents , professionals and extended families.

7. Educational provision needs to be improved upon and new ways of dilivering that eduaction need to be developed. Curriculum also needs to be modified to take account of needs of ASD individual.

The launch of the First Steps Programme has proven very successfull with Shine having trained over seventy people since it's roll out in June 2008. This course has proven to be very successful both with Parents, Teachers and SNA's and we are currently awaiting the next module entitled Challenging Behaviours which will be available in January 2009.

The numbers of autistic persons in our society is increasing all the time. The autistic rate in Cork is now standing at one in every 160 children, down from 15 per ten thousand only a few years ago. Today, it is the norm for every person to know of at least one family who has an autistic member. How things have changed in such a short space of time. Dealing with this huge increase has brought huge challenges, most of which, unfortunately have not been fully addressed by Government.

As most people are now probably aware the key to improving the lives of autistic persons is the early diagnosis of the condition so that appropriate interventions can then be put in place at the earliest age possible. Central to this point is the role doctors(G.P.'s) can play in early detection. On the 2nd of April, Shine will in launch a special section on our website, www.shineireland.com , for G.P.'s to help them when they meet parents for the first time with their young child who is exhibiting signs that may indicate autism. We will also ,over the next few weeks, be sending to each doctor, in Cork, an information sheet on the early tell tale signs of autism and a poster to be put up in every surgery to highlight those signs and information for parents on where they can seek help.

Laura Crowley(Director Educational Support IPAA/Shine) addresses the attendees at the training course