New publication launched to help parents of children with disabilities

The Children and Young People’s Strategic Partnership (CYPSP), in association with parents of children with disabilities, has launched a new publication titled ‘A guide to help you on your Journey through Disability/Additional needs.’

Maxine Gibson, Professional Lead CYPSP, James Martin and Valerie Maxwell Children's Services Planning Professional Advisor CYPSP

This publication provides information, support and services for those with disabilities from birth through to adulthood. The event took place recently at the Long Gallery in Stormont and was officially launched by actor James Martin, star of award-winning BAFTA and Oscar film ‘An Irish Goodbye.’

In association with Barnardo’s PosAbility Group, a supporting booklet titled ‘All about Me’ has been produced by CYPSP.

This is a template that will hold information on the person with additional needs/disability, providing key information on their personal details. For example, diet and allergies; medical information; likes and dislikes; therapy and personal care, equipment used and any further information relevant, which the child/young person can take with them when attending e.g. a youth club, school, health appointment, afterschool activity, when with childminders and other family members who help care for them.

Aidan Dawson, Chief Executive, Public Health Agency and Chair of CYPSP said: “I am delighted to endorse this resource. Co-production with parents, children, families and the strengthening of multi-agency early intervention is fundamental to the development and implementation of CYPSP Strategic Planning.

“This resource co-produced by parents for parents is an excellent example of partnership working. It is our hope that, the provision of information and advice contained in this resource, will benefit parents starting on their own journey through disability, as well as those navigating structures and systems at key points in their children’s lives.”

Ciara McKillop, Deputy Director of Social Services in SPPG, Department of Health said: “This is an important and timely resource co-produced with CYPSP. The guidance and signposting for parents of children with disability begins to address a number of objectives set out in both the Regional Autism Strategy and the forthcoming Regional Disability Framework and will be of enormous benefit to parents, children and young people.”

CYPSP worked with parents from across Northern Ireland, community, voluntary and other statutory agencies to identify key information for the publication is based on the guidance provided by parents through their lived experience.

The guide can be accessed at https://tinyurl.com/YourJourneyGuide

Notes to editors: 

1. This work came about from research carried out originally by the CYPSP Newry Locality Planning Group. It produced a report based on the lived experience of parents of children with disability and the challenges and barriers they have faced. That report was called “Our Journey through Disability”. 
2. The CYPSP Partnership endorsed that report in November 2020 in respect of delivering across Northern Ireland the key recommendations set out to improve outcomes for families and children and young people with disabilities. A number of task groups were established across each Outcomes Group Trust area to deliver on the Our Journey recommendations and this work originated from the Southern Trust area. 
3. The Task Group is made up of parents, community, voluntary and statutory members, and chaired by Parents, working very closely together to design and co-produce this new Regional Northern Ireland wide “Guide to help you on your journey through disability/additional needs” and a new All About ME booklet for young people has also been co-designed by Barnardo’s, PosAbility young people’s group. During conversations that took place parents felt it would be really useful if the guide was laid out on the child’s journey from birth through to adulthood that would assist with easy navigation, advice, information and signposting around their key stages.
4. Organisations that attended the launch event and provided support information are: Autonomie, Family Support NI, Mencap, Parent Participation Project (Parentline), Cedar, Mae Murray Foundation, Barnardos, Disability Action, National Autistic Society.
5. The event was hosted by Robbie Butler, MLA.
6. For media enquiries please contact DoH Press Office by email pressoffice@health-ni.gov.uk
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8. The Executive Information Service operates an out-of-hours service for media enquiries only between 1800hrs and 0800hrs Monday to Friday and at weekends and public holidays. The Duty Press Officer can be contacted on 028 9037 8110.

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