ALT Caleb's Cause NI 5-POINT MANIFESTO ASK Ending the cliff edge for young people with complex needs. Building a system that works for life - not just until 19. POST-19 SEND LEGISLATION (CALEB'S LAW) Statutory legislation to end the cliff edge for young people with complex needs leaving special school at 19. Post-19 SEND must be a Programme for Government priority - not an afterthought. A STATUTORY CARE PLAN FOR EVERY YOUNG PERSON WITH COMPLEX NEEDS Underpinned by Caleb's Law - a legally enforceable, person-centred care plan at transition, covering health, housing, respite, transport, controllership and lifelong support needs. No more silos. No more gaps. A CROSS-DEPARTMENTAL SYSTEM OF SUPPORT All departments - Health, Education, Communities, Housing - must work together around the individual. Complex needs do not belong to one department. We need joined-up government, not joined-up waiting lists. A REGISTER AND TRACKING SYSTEM FOR ADULTS WITH COMPLEX NEEDS

ALT Caleb and his mum

ALT What is Caleb's Cause asking for this year? •.• We want an amendment to the Chronically Sick and Disabled Persons (Northern Ireland) Act 1978: (48 yrs with no update) • to strengthen transition from children's to adult services • to embed an outcomes-based service model • to support continuity and quality of services across Health and Social Care and for connected purposes • to have equity of choice through implementing a statutory lifelong care plan for those with complex needs • to have this made a priority by our Executive to ensure full cross departmental ownership This is long overdue. The Department of health needs to take the lead but many departments have a responsibility. We are asking for an updated amendment to existing legislation. This can be done in this mandate. So many are being left behind. No data, no tracking and no support. This is on our doorstep.

ALT Caleb’s Cause Event - What about us? Monday 17th Nov 5-8pm Stormont

ALT 08:18 • U 97 Your story. 27s From create mode › Currently there are consultations going out about the new Learning Disability Service Model I haven't read it all still in progress but there are some positive steps that are being looked at. I have been liaising with the Department of Health and will continue to share how parents/carers feel. I do feel like maybe we are taking a small step in a positive direction. It will be slow and that's the frustrating part for us who want a solution now. I find that the hardest. If you want to have a look at the new Learning Disability Service Model I would direct families and carers to look at pages 37 to 64, that is the core of the model, it sets out what people can expect from the transformed service: Life Changes - Healthcare- Carers and Families - Meaningful Lives and Citizenship - Home The Department of Health are doing Roadshows throughout all the trust areas. As parents we often feel our voices are not heard this is an opportunity

ALT Questions for DOH - Caleb's Cause NI 1. The Post School SEN Project carried out by Caoimhe Archibald and the Department of Economy have plans to offer new provision for 'some' young people who have the relevant qualifications to access training and employment. Leaving once again young people with complex needs (coming out of special school) behind. Do you think the DOH need to step in to meet the gap in provision? If not, which department do you think takes the lead on Post 19 SEND? 2. This week the Education Minister, Paul Givan, revealed his proposals for a £1.7 billion Executive-led Capital Investment to transform Sen infrastructure over the next 10 years. He stressed this is 'not just an education issue- it is a societal obligation'. If it's recognised that this is needed for children (and children grow up), should provision in adulthood not be continued as we all know disabilities do not disappear into adulthood? 3. There is a lack of data surrounding Post 19 SEN, how can this be

ALT 5. If a full package of care is not available now, how will the rise in numbers leaving special school be accommodated? With the lack of trained and experienced carers for self-directed support, should more funding be released to 'Day Opportunity' charities who are able to fill the gap? 6. If the Trust won't fund a 1:1 support worker to enable a young person with complex needs to go to Day Opportunities placement 5 days a week, and day centre placement is not appropriate as the young person is not with their peers - then where are these young adults supposed to go? 7. If a full 'Needs Assessment is carried out by the Learning Disability Team and a young person is assessed as needing 1:1 support to access 'Day Opportunities' (with their peers) Why can the trust not fund a 1:1 support worker? With self- directed support the responsibility falls back on parents/carers, do you think this is fair considering they cannot find appropriate trained carers? What is the solution to

ALT Calebs Cause NI • • . 55m • G Another day, another meeting, another presentation. Today's health committee meeting was tough. It always takes me a day or two to recover. Mentally it's full on. Thank you to the health committee who gave me time to meet with them, very grateful to each member that spoke up on our behalf. I will always be real, always let my feelings show because I live this too and I watch young people and their families go through heartbreaking situations. I want to help so desperately but the reality is we need Northern Ireland Assembly to see the issues around Post-19 SEND as a priority. We need The Executive Office to act. Young people with complex needs require a care plan for life. They require a multi disciplinary approach across departments and our government. This is will take all of us standing together. I know you're all exhausted and feeling abandoned by the system but please stick with us. #CalebsCauseNI #AFutureForAll #lifelongdisabilities #calebslaw

ALT Caleb holding a framed picture that says I am unique artistic adventurous creative