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April 2013 newsletter from SNPA

SNPA welcomes new remit of Ombudsman for Children

On 5th April, it was announced that the National Council for Special Education (NCSE) will, from the end of this month, come under the investigative remit of the Children’s Ombudsman Emily Logan.
In relation to the NCSE, the Ombudsman will work independently on complaints about SNAs and will see if there had been maladministration of the scheme and if there had been an adverse effect on the child involved. 
 The remit comes into effect on 30th April and only incidents occurring after that date can be pursued.
You can read more about the remit on our website

Run, Jog or Stroll for SNPA

We are looking for some lovely ladies to run, jog or stroll on the Special Needs Parents Association Flora Mini Marathon Team again this year. The marathon has proved to be a great day out and we are very grateful to the mums, grandmothers, aunties, sisters and friends who have joined us in previous years.This is our biggest fundraising event of the year and we need your support.Please register your race entry separately on the Flora website and then CLICK HERE to join our team and we will send you out a sponsorship pack. Entry closes on 24th April so please register soon. 

 
 

Ireland's First National Respite Centre for Children with Genetic and Rare Diseases

Liam's Lodge will be Ireland's first national respite centre for children and their families affected by genetic and rare disorders and is the idea of Tony and Mary Heffernan, parents of Liam who has Battens Disease and Saoirse who died from the same condition in 2011.
Located outside Tralee and close to Kerry General Hospital, phase one of Liam's Lodge will see an initial 10 specially designed units constructed to provide a week of much needed respite for 520 families each year. 
To find out more about how you can help make Liam's Lodge a reality see their Facebook page or email  info@LiamsLodge.com.
 
 

Report on DCA Review & Disability Allowance Approved by Cabinet

This month, two important reports came before the Cabinet for consideration; the long awaited Report from the Advisory Group on Tax & Social Welfare concerning Disability Allowance and the Report from the DCA Steering Group on the Domiciliary Allowance Scheme.The new proposed DCA Scheme heavily reflects the input from parents and organisations that made submissions as part of the public consultation process carried out last Autumn.
You can read more information about both reports HERE.
Website Titbits
Blogs
Our website blog posts include articles on funding a special needs trust, horse riding in Wicklow and the birth of the Grace App. 
Get The Facts
Read about health, education,entitlements and much more in our Get the Facts section.
Parent Stories
We would love to include your story in our Parents Stories section. 
Event and Service Survey
We are in the process of rescheduling our General Meeting and conference which we recently had to postpone. It would be very helpful to us if members could complete this short survey with  preferences so that we can plan ahead.

School Transport Scheme

26th April is the closing date for School Transport applications for 2013/14 school year. More information and application forms are available on the Bus Eireann website.
The School Transport Scheme for Children with Special Educational Needs is operated by Bus Eireann on behalf of the Dept of Education. SENOs are required to sanction all applications. Read about the scheme HERE. Application forms are available from education.ie

 

European Month of the Brain

In May, Ireland will host the European Month of the Brain as part of its EU presidency. The Neurological Alliance of Ireland ( NAI) and its members will hold a month long series of events, aimed at promoting awareness of neurological conditions. More information and a calender of events can be found on the NAI website.

Resource Hours for Pupils with Down Syndrome

 Currently a child with Down syndrome cannot receive resource teaching hours if he/she has a diagnosis of a mild general learning disability except via the general allocation for pupils with high incidence disabilities. This petiton calls for all pupils with Down syndrome, regardless of a secondary diagnosis, to be able to access resource teaching hours.

July Provision

The July Provision scheme provides funding for an extended school year, through the month of July, for children with a severe or profound general learning disability or children with autism.Full details of the scheme will be available towards the end of April. If you would like to be notified by email when the scheme details are published you can complete the form on the Department of Education website at this LINK.
 

Report on Living in the Community 

The Disability Federation of Ireland and the Not for Profit Business Association have published a joint research study on services and supports for people living with a disability in the community. 'The study investigates the nature, scope, level and quality of community-based supports and services provided to people with disabilities and their families by voluntary disability organisations in Ireland.' You can read the report HERE.

Local Support Groups

Support groups can help reduce the feelings of isolation that parents of children with special needs sometimes experience as well as provide an opportunity to develop friendships and parent to parent support. A list of local groups throughout Ireland are available on our website. If you know of any which are not included please email us with the details; info@specialneedsparents.ie

World Meningitis Day on 24th April

More than 1.7 million people around the world are affected by meningitis every year. Join Hands Against Meningitis is calling on governments worldwide to include meningitis preventing vaccines in their national immunisation programmes.  Sign the petition HERE.
Offering meningitis awareness and support across Ireland, ACT for Meningitis was established in 2011 by Siobhan and Noel Carroll who lost their 4 year old daughter Aoibhe to the disease. ACT for Meningitis is a member of COMO (the Confederation of Meningitis Organisations)
 

Public Q and A Meeting held in Wicklow

On Monday 15th April a public meeting was organised by Miriam Murphy of Arklow Disability Access Group (ADAG) and Lorraine Dempsey Chairperson of SNPA at the Arklow Bay Hotel. The meeting was a chance for people with disabilities and their families in County Wicklow to come together and to raise issues in person with their Local TDs. The evening was a big success and one which will be repeated on an annual basis. The press release can be read HERE.
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