Parents Together: Have Your Say. A survey of parents and carers of children with disabilities, complex and/or additional support needs.

Transcription

1 Parents Together: Have Your Say A survey of parents and carers of children with disabilities, complex and/or additional support needs. Number Ten, 10 Constitution Road, Dundee, DD1 1LL Charity No. SC Company No. SC093088

2 2 CONTENTS Executive Summary 3 Context 4 Method. 4 Data Findings & Analysis 6 Help & Support. 6 Information and Communication. 10 Assessment Experience.. 13 Areas For Improvement 16 Recommendations Appendix 1 Questionnaire... 25

3 3 Executive Summary Help and support On the whole respondents were happy with the help and support that was available to them as parents and carers and for their children. However they would like more help and support. The voluntary sector was highlighted by participants more than the public sector for providing help and support. Many positive comments from all sectors recorded. Information and Communication Parents and carers did not feel confident about having enough information about the services that may be available to them. Whilst respondents preferred to receive information from education staff they also highlighted the need to increase awareness in schools about the services that were available to them. Parents and carers preferred methods for communication was through letters and information packs. Respondents overwhelmingly thought that access to information would be improved through having one central place and through use of a website and face book. Assessment Experience Parents and carers benefited from having an assessment which gave recognition of a child s condition and opened the door to receive important help and support. However examples were given of long waiting times and a lack of information and communication even following a diagnosis. Areas for Improvement Parents and carers focussed on the need for more social interaction, social groups and after school activities for both children and families. This was in relation to both specialised and mainstream provision. Circle of friends may be one way of supporting access to main stream activities. Disability sport and improved access to swimming was also highlighted as a need with specific support named in the survey. Knowledgeable staff was seen as important, in particular the need for more training for education, health and social work staff and childminders was identified. Specialised childcare to allow parents and carers to access employment was also highlighted. Additional support in terms of respite, therapy and help with behaviour and communication was seen as key. Transition was seen as a key time in a child s life and the desire to keep children within children s services longer were raised as an important issue for parents and carers. The importance of including parents and carers in events or support classes to ensure lived experiences are heard and knowledge gained is maximised to shape and influence change. 24 parents expressed an interest in continued involvement. September 2014

4 4 Parents Together: Have Your Say Context A new Strategic Planning Group (SPG) for Children with Disabilities, Complex and Additional Support Needs was established when the Dundee Integrated Children s Service was restructured in summer Every Child and Young Person Matters, the network of voluntary organisations working with children and families, supported through Dundee Voluntary Action, nominated two representatives to the SPG. It had been a couple of years since parents and carers had been consulted and reps were keen to seek their views to help improve services for children and families in Dundee. Method A focus group meeting was held in March 2014 with 6 parents and carers of children with disabilities, complex and/or additional support needs to identify gaps in services. Four staff from third sector organisations were also in attendance. They were asked What works well? What are the gaps? What would they like to see? The issues voiced by participants were collated in themes and developed into a questionnaire under the following topics: Help and support Information and communication Assessments Areas for improvement A questionnaire was developed and then piloted with one parent where minor changes were made. The questionnaire was then shared with focus group parents and carers who had been in attendance at the focus group and 3 further people who had not been able to attend the first meeting for feedback. There were no further changes following the pilot. (Appendix 1) The questionnaire was ed to Community Planning partners through Integrated Children s Services, third sector providers of services for parents and carers of children with disabilities, DVA Every Child and Young Person Matters and Equality Forum networks. The questionnaire was made available in word and through survey monkey, with the options of other formats if requested. Community Planning partners were encouraged to cascade the survey to support parents and carers to complete survey. Respondents were given 4 weeks available to make response.

5 5 A telephone survey, with 10 Barnardo s Family Support service users, was conducted by a University of Dundee education student, the data from which has been merged with the survey monkey findings and analysis. Respondents were assured of confidentiality unless they chose to provide names and contact details to receive a copy of the report or if they wanted to get more involved in making change happen. Thirty-two people left their contact details for a copy of the report of which 24 wanted to get involved in making change happen. The research was carried out between May and June A total of 58 responses were received either through questionnaires or telephone surveys. A further 2 responses came in 2 and 3 weeks after the survey closed and analysis had commenced so were not included in the result. Respondents who replied through survey monkey and word document 90% had children with social & communication difficulties or ASD 44% had children with complex needs 19% of respondents had children with ADHD The analysis was undertaken by 3 members of Every Child and Young Person Matters Group who are also reps on Integrated Children s Services Joint Management Group and Children with Disabilities, Complex and Additional Support, the latter are also third sector service providers.

6 6 DATA FINDINGS AND ANALYSIS Help and Support Q1. Respondents were asked if any voluntary organisation, council or health service had been particularly helpful. 87% said they had experienced helpful services. Q2. When asked which service had been particularly helpful as a parent or carers most named between 1 and 6 services which have been categorised in Table 1. One person named Aspire though this is not shown in the chart as it is a partnership between NHS and SWD. 60 Where Help & Support Was Received Education Voluntary Sector Leisure & Culture Health DCC (Other) Social Work 10 0 Education Voluntary Sector Leisure & Culture Health DCC (Other) Social Work Table 1 Respondents were asked what services they currently receive with the majority of respondents, 23, indicated they were now only in receipt of one service. These were equally divided between both voluntary and statutory provision. The evidence suggests that initial involvement may have been from a number of agencies and departments following an initial diagnosis or support however that involvement reduced usually to one or two agencies.

7 7 Q3. Respondents were asked in what way services had been particularly helpful. Responses included: Guidance and coping strategies Parenting advice Support with attending meetings including in school and advocacy Information and increased understanding example given was in dealing with autism Support techniques - behaviour management, dyslexia support and learning techniques, improving co-ordination and communication Information and support before diagnosis Respite care, holiday and play provision Peer support Financial advice Some comments; Helping us with setting boundaries and learning to manage challenging behaviour Respite care for me as a parent, support for my son to develop his communication and social skills, a safe and happy place for him to go Q4 Respondents were asked what support they currently receive as a parents or carers. The support have been categorised below; Providing all round support (practical, physical & emotional) Help to cope with child s behaviour and social skills Help to understand a child s diagnosis Someone to talk to Being listened to Peer support Support to wider family Offering play schemes & respite care Carer support & valuing the carer role Accessing equipment, benefits, and direct payments One respondent said: Not much. It's easier to cope when you understand your child's needs and stick to same routine everyday

8 8 The support that was most often mentioned and valued was: Respite care Holiday play schemes an afterschool clubs Advice and support The organisations/departments highlighted as providing support for parents and carers were : Barnardos, Parent-to-Parent, Dundee Carers, Spectrum, Cornerstone, Gillburn House, Health Visitors, Armitstead, Frances Wright, National Autistic Society and Pre-school Home Visiting. Q5. Adequate Support for Parents and Carers? When respondents were asked how adequate support was for parents and carers, they were generally happy with 74% finding the support excellent or good. Table 2 Whilst the majority of respondents found the support to be good or excellent they also expressed the desire for more of the same type of support. Q 6 What support is currently received for their child/children The organisations/department highlighted Early Intervention Team, DDCA, Armitstead, School, NAS Branch Dundee, Playzone at Kidsworld, Nursery, Enhanced Provision (school), Frances Wright Nursery, Speech and Language Therapy, Parent to Parent, Mitchell St Learning Centre, St Paul's High School, Health visiting, Barnardos

9 9 Gillburn House, Learning support in School, Kingspark, Inclusion Group, Dudhope Q7 Respondents were asked how adequate support for their child. 75% found the support excellent or good. Table 3

10 10 Information and Communication Q8. Respondents were asked how well informed they feel about the services that are available. The 33% of respondents did not feel well informed, answering poor to the question. Though average and good responses were not far behind this area requires attention. Table 4 Q9. Respondents were asked how they prefer to receive information. Respondents were asked to tick as many of the any of the options available. 70% indicated they would like to receive information from Education Staff, 64% via a letter and 53% via the internet. Others included . As the table indicates, practitioners need to use a range of methods to convey information.

11 11 Table 4

12 12 Q10. How can access to information be improved? How Access To Information Can Be Improved Central Place Information available on websites, facebook Increase awareness to schools about support available Info given at time of diagnosis Open days Monthly updates, newsletters advertising info Make literature straightforward 0 The majority of respondents wanted information through a central source. Comments which reflect some of the feedback include; Very bitty, some parents know about something and other parents know about other things. No one place to source info. One website with all info would be good. I think when a diagnosis is given would be an ideal time to include a list of current services. Also to make lists available through Dundee City Council website, local clubs, Facebook pages Education department should promote a greater awareness to all schools and teachers about literacy and numeracy support and awareness. Clarity amongst schools is not universal and more work needs to be done and greater resources available for dyslexia, dyspraxia etc

13 13 Assessment Experience Q11. Parents and Carers were asked what they felt the benefits were of having an assessment. Most parents and carers felt that a diagnosis provided the opportunity to receive support and help and that it was very important. Most parents and carers commented on the time it took for the assessment process to happen. Some parents felt like they were left without information and no one to contact following the diagnosis. Overall, the areas for improvement were rated as important or very important. Some parents weren t sure about whether the questions related to mainstream school as their child goes to Kingspark. Q12 Only those respondents whose child had had assessment in the past 2 years were asked to respond to the following question. 68% of the respondents met the criteria. Q13. Parents and carers were asked to share their experiences both positive and negative about their child s assessment. From the range of responses just over one third had a positive experience, with just under a third having had a negative experience. The other respondents were somewhere in the middle. Identification of the condition so that support and strategies can be put in place. It opens doors to better support from education, access to specialist support and specialist agencies such as Spectrum and welfare benefits It provides improved support for families and a greater understanding of the child s needs. It provides reassurance and peace of mind to parents and an explanation of unusual behaviours and the difficulties a child faces. The child s difficulties are real and genuine not imagined. It helps other family members understand the needs of the child. Helps forward plan in relation to the child s needs and future, including health needs. Waiting times were highlighted as a concern. For example one family had waited 3 years for a health related assessment, whilst others felt that they constantly had to chase up appointments and promises of support. Lack of information and lack of communication

14 14 Vagueness around diagnosis and feedback after diagnosis was an issue. Q14. Respondents were asked specifically about their experiences in relation to adaptations, wheelchairs, transport and medical appointments. From the range of responses most felt Waiting times for appointments were too long and unacceptable Many stating that they had to push professionals to get final results. CAMHS waiting list was cited as a particular problem, with examples of waiting times running to one year. Q15. Respondents were asked after their experience with aftercare following a diagnosis. For the majority of respondents this was seen as a real area of concern. Many people feeling Unsupported following diagnoses and for some they felt they had no one to speak to or to contact for help. In many cases parents felt that this was where the support ended One family said that they had waited 8 months to receive help with their child s poor sleep pattern. Passing on information was thought to be helpful such as leaflets but which then led to diminished confidence in services Comments which reflect some of the feedback include; The aftercare was fairly minimal... None. I asked for some help re: sleep and was told I would wait 8 months for an appointment Q16 Respondents were asked how important the issue of waiting times for health or social work assessments were for them. 86% indicated it was either very important or important to them.

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16 16 Areas for Improvement Q17 Respondents were asked how important the issue of waiting times for services from voluntary organisations were for them. 78% expressed the importance of waiting times for services evidencing similar value of statutory and voluntary services. Table 7 Respondents were asked how important additional support in mainstream education was for them.

17 17 Q19. Respondents were asked to rate how important the idea that volunteers and staff from voluntary organisation could provide support in nurseries and schools. 86% of respondents rated this as a very important or important idea which may be worth exploring. One exceptional additional comment from a respondent was: I feel that the Education Department should not be cutting back providing support but this is what is happening. I feel the money needs to be ploughed into this area, without having to rely on the voluntary sector.

18 18 Table 9 Q 20. Respondents were asked to rate how important the idea developing a Circle of Friends in mainstream as a way of promoting children s inclusion and interaction with peers was. A total of 79% of respondents rated this suggestion as very important or important.

19 19 Table 10 Q21. Parents and Carers of Children with ADHD only were asked the following two question. 19% responded to the next question. Q22. Parents and Carers of Children with ADHD were asked what support they would like for their children? The responses in descending order were as follows: More social groups/ social interaction More training for Education Staff More training for Health Staff More training for Social Work Staff Enough space at Frances Wright Nursery Training for childminders Q 23. Parents and carers of children with ADHD were asked a specific question about how important is it to review and update information in the ADHD pack.

20 20 100% of respondents thought it was important or very important. Q 24. Parents and carers of children of who had social and communication difficulties or ASD were asked the answer the following questions. 91% of respondents answered. Q 25.Parents and carers were asked what additional support they need for their child/ren. The answers included: Respite More therapy Options of support Help from social work department Help from CAMHS Respondents did appreciate the support available with comments including: After school activities Extra Therapy Help with behaviour and communication Info about support Enhanced provision More GP appointments Circles of friends Mainstream Activities Better links between NHS and local services Transition Q 26. Parents and carers of children with complex needs were asked to answer the following two question. 44% answered the question. Q 27. Parents and carers were asked what support they would like for their child/ren with complex needs? Social interaction and after school activity Knowledgeable staff and regular meetings to ensure that they knew what support was available, for example regarding equipment available for the child and home. Better access to sports activities Access to mainstream activities Better communication and information. Access to therapy and other services that improved well-being.

21 21 Assistance with transition to further education including more support and availability of choices. Q 28. Parents were asked how important improved access to swimming pools was for swimming for children with disabilities, complex and additional support needs. The Table 11 illustrates that 88% believed this to be important or very important. Q 29. Parents and carers were asked what additional support does your child need to access swimming? Quiet pool and supervision Assistance in pool and changing room Specialist in ADS and visuals Swimming coach in pool Non communal changing area/larger cubicle Someone to take child Q 30. Parents and carers were asked what improvements can be made generally. Respondents replied in descending order the following; Information on where to get support Better communication between services

22 22 Be more family aware Shorter waiting times Services to be more aware of support needs Enhanced provision Respite Q 31. Parents and carers were asked what gaps there were in services. Information Communication between organisations Respite Lack of understanding in Education Communication Larger gap between children and adult services Disability sports More support for schools Childcare Support for heart disorders Social opportunities Q32. Parents and carers were asked what inclusion meant to them 29 % of respondents replied integration with support The following were responses from 1 or 2 respondents; Acceptance and not being made to feel different. Needs being met to access services Inclusion is not for every child Better quality of life Respect Being involved in all aspects of a child s development Communication To include Comments included Not separating people due to ability. Acceptance. Make allowances and respect everyone. Being involved and being part of society- Accepted Bringing everybody to an equal basis-no stigma. Equal access and opportunities. Being included. People being aware of needs and that everyone is different. Trying to give everyone a normal experience of life, being accepted in society. The ability to go out into the community without judgement. Everyone being aware of differences.

23 23 Social inclusion Acceptance in society- everyone getting to be who they are and not what other people expect. Accepted in society. Inclusion is being included in society. Everybody treated the same. Q 33. Parents and carers were asked how we can include you and the family. 69% of respondents answered this question. Responses included: Recognition that one size does not fit all. Including parents and carers in events or support classes to ensure our experience and knowledge is heard in order to influence change. Provision of specialised childcare to allow parents and carers to work. Better training for staff, especially around ASD. Activity support groups for both children and parents/carers. Improved public awareness More information on what is available Inclusion from birth How to be more inclusive Think more people need to be educated so that there is less judgement of people with disabilities and additional support needs. Opportunities to meet more parents who have children with similar needs More support for families to do daily activities A few parents commented that due to their child s needs they didn t feel that as a family they could be included.

24 24 Recommendations Improve waiting times for an assessment and follow up appointments, in particular CAMHS service Increase respite care, access to after school activities, holiday play schemes and support to access mainstream activities for children including swimming and sports Provide a central point for information and support and set up a website and social media Ensure provision of support and advice following diagnosis Explore use of circles of friends and peer support Ensure a range of methods are used for communication Ensure a knowledgeable work force in particular education, health and social work staff and child minders Explore support from voluntary organisations within schools Christine Lowden: Dundee Voluntary Action Moira Bisset: Parent to Parent Dave Anderson: Barnardos

25 25 Appendix 1 Parents Together: Have Your Say Every Child and Young Person Matters is a network of voluntary organisations working with children and families. We would like to hear the views of parents and carers of children with disabilities, complex and/or additional support needs. This questionnaire has been developed with a small group of parents and staff. It is important to us that we hear from a wider group of people. The findings of the survey will be given to the Children with Disabilities, Complex and Additional Support Needs Strategic Planning Group to help improve services for children and families in Dundee. This survey should only take 15 minutes. This survey is confidential unless you wish to provide your name and contact details so that we can keep in contact with you about the findings or you if would like to get more involved in making change happen. Please complete this survey by 2 June 2014 and return to Christine Lowden, Number Ten,. Help & Support 1. Is there a voluntary organisation, council or health service that has been particularly helpful to you as a parent or carer? Yes [ ] Go to Q2. No [ ] Go to Q4a 2. Please tell us which voluntary organisations, council or health service has been particularly helpful to you as a parent or carer. 3. In what ways has the service been particularly helpful to you? 4. a What support do you currently receive as a parent/carer?

26 26 4b. How adequate is the support? Poor Average Good Excellent 5a. What support does your child/children currently receive? 5b. How adequate is the support? Poor Average Good Excellent Information and Communication 6. How well informed do you feel about the services that may be available to you? Poor Average Good Excellent 7. How would you prefer to receive information? Tick all that apply. Letters [ ] Leaflets [ ] Information Packs [ ] Key workers [ ] GP/Consultant [ ] Education Staff [ ] Support Groups [ ] Social media ( twitter, facebook ) [ ]

27 27 Text [ ] Phoneline/Support Line [ ] Internet [ ] Parents/carers [ ] Other (Please specify) [ ] 8. How can access to information be improved? Assessments 9 What would you feel are the benefits of having an assessment? By an assessment we mean a diagnostic assessment at Armitstead or CAMHS (Dudhope) or assessment of needs. Has your child had an assessment in the past 2years? Yes [ ] Go to question 9. No [ ] Go to Question Tell us about your experience with your child s assessments both positive and negative? 10. Tell us about your experience of waiting times, for example for adaptations, wheelchairs, transport, medication and follow up appointments?

28 Tell us about your experience with aftercare following an assessment? Areas for improvement Please rate how important the following issues are for you? 12. Improvement in waiting times for health or social work assessments? Not Important Quite Important Important Very important [ ] [ ] [ ] [ ] 13. Improvement in waiting times for services from voluntary organisations? Not Important Quite Important Important Very important [ ] [ ] [ ] [ ] 14. Additional support for children in mainstream education Not Important Quite Important Important Very important [ ] [ ] [ ] [ ] 15. It has been suggested that volunteers and staff from voluntary organisations could provide support in nurseries and schools. How would you rate this as an idea? Not Important Quite Important Important Very important [ ] [ ] [ ] [ ]

29 It has been suggested developing Circle of Friends in mainstream schools as a way of promoting children s inclusion and interaction with their peers. How would you rate this as an idea? Not Important Quite Important Important Very important [ ] [ ] [ ] [ ] 17a. Does your child have ADHD? Yes [ ] Go to Question 17b No [ ] Go to Q18a 17b. What support would you like for your child/ren? 17c. How important is it to review and update information in ADHD Pack? Not Important Quite Important Important Very important [ ] [ ] [ ] [ ] 18.a. Does your child/ren have social and communication difficulties or ASD? Yes [ ] Go to Question 18b No [ ] Go to Q19 18b What support would you like for your child/ren? 19a Does your child have complex needs? Yes [ ] Go to Question 19b No [ ] Go to Q20 19b What support would you like for your child/ren?

30 How important is improved access to swimming for children with disabilities, complex and additional support needs? Not Important Quite Important Important Very important [ ] [ ] [ ] [ ] 21. What additional support does your child/ren need to access swimming? 22. What improvements can be made in services generally? 23. What gaps are there in services? 24 What does inclusion mean to you?

31 How can we include you and your family? Thank you for taking time to complete this questionnaire. Would you like to receive a report on the findings of this survey? Yes [ ] No [ ] Would you like to get involved in making change happen? Yes [ ] No [ ] Name Address /Home

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