York ‘4’ Families Raising Disabled Children; Family Led Holistic Support Services

1. York ‘4’ Families Raising Disabled Children; Family Led Holistic Support Services Alex Legge Megan Malleson

2. How we have ‘evolved’; why we are here together! When we started How we compliment each other How we are different; early intervention crisis

3. Parent Mentoring ServiceMegan MallesonParent Mentoring Coordinator How the service has been embedded in York

4. Parent Mentoring – The National Picture • CSV (Community Service Volunteers) is a national volunteering and learning charity. • CSV believes that volunteers have a unique role in supporting vulnerable people in society. • CSV set up Volunteers in Child Protection (VICP): volunteers support families with a child protection plan. • 10 years of delivery across England • Parent Mentoring Service is a pilot project aimed at supporting families at an early intervention level. • Runs on the same principles as VICP • 2 years funding from Department for Education • Delivered in 8 locations around the country • Working in conjunction with a local authorities.

5. Parent Mentoring – In York • Parents involved with CANDI identified the need for peer support for parents with a disabled child. • CYC worked with CSV to develop Parent Mentoring into a service specifically for parents of disabled children. • CSV Parent Mentoring Coordinator would be based at CYC offices, sitting alongside Special Educational Needs teams. • Parent Mentoring in York began in August 2011 and is currently funded until March 2013.

6. What is Parent Mentoring • Matches trained volunteers with families who have a disabled child and are struggling or going through a stressful time. • Volunteers provide: • Listening ear • Helping hand • Chance to talk and think through problems and concerns • Non-judgemental perspective from someone who understands the family’s situation. • Volunteers support parents to: • Improve parenting skills and knowledge • Access existing community support services • Improve child’s access to school and enthusiasm for learning • Understand their child’s impairment or medical condition and possible coping strategies. • Volunteers visit the family each week for between 1 and 4 hours. • Matches usually last for 6 to 9 months.

7. Volunteers and Families Volunteers • Recruited via a number of methods. • Go through an extensive 6 step recruitment process. • Must demonstrate right skills. • Receive regular support and supervision whilst matched. • Submit weekly Record of Contact forms detailing their visit. Families • Referred by professionals • Some families self-refer • Must meet following criteria: • A child/young person aged 5 to 25 who is disabled or has physical or learning needs. • Experiencing stress or difficulties • Willing to engage with a volunteer mentor. • In a position where volunteer can make an active difference • Matching volunteers and families is done carefully.

8. Case Study • Volunteer: • Has a disabled daughter aged 16 who has similar needs. • Has many years experience of disability and disability services. • Felt she wanted to support other parents. Mum: • New to York and recently moved in with new partner & brought 2 families together – 7 teenagers! • Partner’s 16 year old daughter has learning and emotional needs. • Mum wants to support her step-daughter but is new to ‘world of disability’. • Volunteer and Mum meet regularly at home and talk about how things are going. • Volunteer helps Mum to understand services and how best to use them; e.g. short breaks, transitions, statements etc • Volunteer can empathise and offer suggestions and coping strategies. • Mum is new to York and doesn’t know many people so they go out for coffee or lunch

9. Case Study ‘She is such a positive person and gives me a boost each time she comes. I use the sessions as a real opportunity to get things off my chest.’ ‘As someone who is very new to the special needs sector, I needed a lot of support myself from someone who has been going through it all for a lot longer.’ Mum’s thoughts on her volunteer ‘One of the best things my volunteer has taught me is that sometimes it’s ok not to know! Sometimes there aren’t any answers to questions and having someone who can empathise with that is great.’

10. Outcomes – the Stats! Since August 2011... 4 rounds of volunteer training delivered. 68 People have expressed an interest in volunteering for Parent Mentoring. 21 Families matched to a Parent Mentoring Volunteer. 29 people have been through the recruitment process to become a Parent Mentoring Volunteer. 39 families referred to Parent Mentoring.

11. Outcomes – What the Families Say ‘Because I know that my volunteer is coming and I know that I can talk to her about things, I feel more relaxed. Especially when there are so many things going on I can get a bit stuck’ ‘We thought that it might be more formal or structured than it was and we were both really pleased when it wasn’t.’ ‘It really helped having my volunteer, I don’t feel I would have been like I am now without her’ ‘It’s good to have support for us parents, not just the children’

12. Outcomes – What the Volunteers Say ‘I wanted to become a volunteer because as the mother of a disabled child I feel I’m now in the position to help other families’ ‘Being a volunteer helped to improve my communication skills and also helped to increase my confidence.’ ‘It helped that I had a child as I could empathise and we had some things in common’. ‘Supporting Mum at the Child Protection conference when there was no one else there for her was tough but it was brilliant to feel that I was there for her.’

13. Outcomes – What the Referrers Say Parent volunteers have helped a great deal with two families where I am involved. In each case various agencies had tried to support the families but had not been accepted into the home. There were worries about neglect in both cases. The parent mentors have been able to establish relationships which are warm, supportive, and clearly valued by parents and all those working with the family. I very much hope the scheme continues.’ Specialist Teacher The response to the referral was timely and the professionalism of the volunteers has been excellent. They have worked in partnership with mother and Children’s Social Care and have ensured that Children’s Social Care are kept abreast of their involvement and progress. Mother has shared with Children’s Social Care that the volunteers are approachable and friendly. Practice Manager, Children’s Health and Disability Team.

14. The Development, Implementation and Impact of FIRST:Local interventions with disabled children and their families at times of acute need Author and Service Lead Dr Alex Legge Consultant Clinical Psychologist

15. National Picture • Generally, there has been a reduction in the number of children placed into residential care. • It has been recognised that children should where possible be cared for in a family environment with a stable attachment figure (McGill et al, 2006). • Policy and practice regarding children with learning disabilities has changes radically in the past 40 years (McGill, 2008). • Support services for disabled children’s families often remain poor, unsuitable or inaccessible (The parliamentary headings on Services for Disabled Children 2006). • The Mansell Report (Department of Health, 2007) identified continuing problems faced by people with learning disabilities whose behaviour presents a challenge, including the break down of community placements.

16. 2007 CSCI PWC analysis • Approximately 3000 disabled children and young people do not live at home (McGill, 2008) • People placed out of area are more likely to be using challenging behaviour (Emerson & Robertson, 2008).

17. “Because over the years we've been rejected and, you know, you can't come here, we can't work with him, we don't want him, we can't meet his needs, that you think residential is the only option.” (Mother) McGill et al 2010 • Parents perceptions of residential school placements was generally positive. • Some children reported homesickness; reduce family contact, increase vulnerability and accentuate the difficulties of transition (McGill, 2008) • Reinforces the view that the person could not succeed in a local, more inclusive placement. • examples of individuals returning successfully from out-of-area residential school placements (Emerson & Robertson, 2008). • variation in the use of out-of-area placements(Whelton, 2009).

18. Local Background “if we had a bit more support within the home, if I could phone social services and say this is the areas we are having difficulties with…. Just support me to help me take my son out, until my husband came in and respite, that would be my top. (Mother)” • Some parents wanted local services: McGill et al 2010 • Clinicians felt frustrated: Struggling to provide; prompt responsiveness, intensive assessment/support and the coordination needed to maximise the effectiveness of local expertise • Commissioners wanted more options: In many cases, high cost placements are the results of crisis purchasing and can be avoided through more effective planning (Pinney et al, 2005)

19. Results to be achieved • To reduce the number of out of area assessment and placements required. • To improve the MH ‘service experience’ for children with complex needs and their families. • To facilitate the provision of a stable/reliable home environment and support structures. • To support local families. • To support and coordinate local professionals, services and expertise. • To improve and develop local provision.

20. Service Structure • Core Business: FIRST works with children who have a learning disability and use severe challenging behaviours, when there is a risk of the home situation and/or local provision breaking down. • FIRST has one member who is solely committed to the service. • ‘Wrap Around Support’: The service works together with the child’s family, environment/s and other supporters (including professionals and services supporting the person) • Can do: a key feature of the service is linking, coordinating and supporting local professionals, services and expertise.

21. The Provision Tier 1: low level support; PMHW Number of children accessing the service Tier 2: Moderate support; CAMHS Tier 3: High level support for more complex needs; LD Team Tier 3 Plus: Intensive . support; highly specialist needs Tier 4: Specialist Residential

22. Referrals Over Fourteen Months • 12 Local referrals accepted: • 9 parents wished for children to remain in area • 3 wished for an out of area placement • 5 Out of area assessment referrals accepted; • 3 at breakdown/ requesting extra provision • 2 to support transition back into the local area

23. Interventions • Involved close working with various professionals from social care, education and health. • Linking with community provision to develop accessibility. • Has involved various different types of direct and indirect working. • Significant training, supervision and coordination. • Advocacy, including changing ingrained perceptions. • Required flexible, responsive working hours. • Strategic working to develop local services.

24. Outcomes Three Local Children Discharged All reduced range between 9 and 60 percentile drop On-going cases; Post initial trial intervention total score dropped over 20 marks All improved range between 18- 40 percentile drop • Goal Attainment Scale • All goals set improved by either ‘somewhat’ or ‘much better’ than expected. • Developmental • Behaviour • Checklist • Perceived Future Outcomes • Questionnaire • All changed from ‘May need an out of area assessment’ to ‘Will remain at home with current package of support’ • In once case there was also a change in wishes from ‘ placing in an out of area provision’ to ‘remaining at home with current package of support’

25. ProfessionalsFamilies • ‘I find the joint working aspect of the service very helpful as it has allowed a more intensive approach to be taken with the child and in turn this service has enabled a more multi agency approach to be taken with this child’ ……‘enables specific issues to be addressed faster. The service is also able to take a more holistic approach on given situations’ (Social Worker) • This has made my job a lot easier, and I’d like to see it continue – I have no doubt that this will ultimately prove to be cost effective and much better for the patients and their families. (Paediatrician) • Really improved with the service and very rapid development over a relatively short period. Really helping in identifying gaps and provision and useful ways of working to try and address these (Psychiatrist) ‘Acting, rather than just saying. You seem to be getting things done. Without this people don’t seem to be motivated, no one person ‘geeing people up’ saying it can be done….. Why has it taken such a long time for them to realise there was a gap that they weren’t fulfilling’ ‘We feel the support has been a lifesaver for us at a very difficult time for us as a family. It’s a fabulous service.’ ‘I feel that I have an advocate, someone to say it’s ok and will get better, someone acting independently for my son, free of some constraints to enable a true picture of the situation. Sharing her professional knowledge with other professionals has been helpful’…..’ so feel more positive that people understand my son’s needs currently’

26. Case study Child’s presentation; Age 13 on referral, large; over 6ft and very broad Learning Disability Epilepsy Severe Autism Limited communication Poor sleeping pattern Use of Severe challenging behaviour: • Climbing - Pica • Aggression towards others; kicking, hitting, scratching, head butting. • Undressing

27. Case Study • Current Situation • Young person sleeping in parents bed and has a poor sleep pattern • Community Short Breaks limited due to ‘risk • Family feel their child has limited opportunities Functional Assessment • Boundaries, family relationships and stress levels • Sensory needs • Predictability • Communication

28. Model of community support provision Identifying activities that fulfil X i.e. sensory needs, interests etc Problem solving Sharing resources Visiting the venue & meeting with the provider. How can the activity be made ‘X friendly’ i.e. how it’s used adaptations, provisions needed, Risk assessment Joint working and coordination between providers PACT, GG,CSB Introduction of new activity Revision as necessary Helping X to understand the activity/ What he is doing i.e. using Xs language, has he been there before does this need to be considered e.g. using a different entrance to allow new association, social story for process, visual timetable Balance between Variety (novelty) and consistency, timetabling Future Developments The right people i.e. a lead who has confidence, someone X has confidence in including their expectations and boundary setting ability

29. How we fit together Front line heath, social and education staff Parent Mentoring Service Lime Trees Local Authority Health and Disabilities Team Special Education Services FIRST 1 Agreed that more dedicated work required to prevent placement breakdown 2 3 Supported care plan advised Resourced Care Plan Managers and Commissioners

30. Parent Mentor Role Volunteer and family get to know each other based on shared experiences Listening and practical support Supporting the family to implement professional recommendations or family’s goals Linking with existing community support Disabled Child and Their family FIRST SUPPORT Intensive Assessment- systemic functional assessment Collaborative formulation of difficulties Formulation and goal driven interventions Linking with wider systems; maximising existing services, working with commissioners to develop services

31. Barriers and Challenges Anxieties about support/ intervention happening in the home. These services sit alongside local provision and should not replace existing resources. The desire to fill gaps in service; at referral and during involvement. Keeping an awareness of the potential to dis-empower Knowing when to pull out- what is ‘good enough’. Ongoing funding; recognising the resource/ the added value.

32. Benefits of this type of work Intensive involvement; day to day support for a substantial period True holistic care; supporting the whole family in their environments Not being restricted by set or predefined actions Reduction of the ‘revolving door’ effect Cost Saving; reduces pressures on acute services Providing wrap around support which allows for continuity of support once the service has ‘pulled out’

33. Contacts Megan Malleson CSV Parent Mentoring Coordinator Parent Mentoring Service Mill House North Street York YO1 6JQ Tel: 01904 554302 Email: megan.malleson@york.gov.uk Dr Alex Legge Consultant Clinical Psychologist FIRST, CAMHS Lime Trees 31 Shipton Road York YO30 5RF Tel: 01904 726610 Email: a.legge@nhs.net