How parents feel, feedback from our family programme events. Valerie Copenhagen Families Programme Manager

Transcription

1 How parents feel, feedback from our family programme events Valerie Copenhagen Families Programme Manager

2 Setting the context - NDCS National Deaf Children s Society We re here to support more than 45,000 deaf children and young people in the UK and a further 32 million deaf children and young people worldwide. We re here to remove barriers to the achievements of deaf children throughout the world.

3 We believe that: Effective language and communication skills lie at the heart of deaf children and young people s social, emotional and intellectual development Families are the most important influence on deaf children and young people, and need clear, balanced information to make informed choices Deaf children should be involved in decisions which affect them at as early an age as possible Deaf children can do anything other children can do, given early diagnosis and the right support from the start Deaf children should be valued by society and have the same opportunities as any other child

4 Services Some of the services NDCS available to families and professionals include: Free phone helpline Guidance and support around education and benefits Information resources and publications Campaigning support and guidance Technology test drive Young people programme of activities and events

5 Parent experiences - In the beginning We know that 90% of families with a deaf child have no previous experience of deafness. We know that many families have never met anyone else with a deaf child and this can leave them feeling isolated and alone. We know that Parents often don t know where to turn to when they find out their child is deaf. We know that Parents have low confidence around knowing how to support and be a parent for their deaf child.

6 Family Programmes Around 30 One day and non-residential weekend events set up across the UK To provide families the opportunity to: Meet other families with deaf children Share experiences Receive informed and balanced information on a range of subjects such as audiology, technology and education Hear the experiences from adults growing up being deaf

7 Meeting other families...it was the best thing. To be able to talk to parents with similar experiences, who understand your hopes and fears, who can give you some tips and listen to yours it was like we d joined a real world again. None of these families were the same as ours and that didn t matter. They had all chosen different ways of doing things and that was reassuring too there wasn t just one way to go.

8 Principles Working with the family Focused on family identified concerns (priorities, hopes, needs, goals and wishes) Building upon individual family strengths to meet family needs Recognises and promotes the fact that families need to live their typical lives Supports parents and families to build confidence and competence in their deaf child s development Recognises the diversity within cultural groups and ensure that the programme is fully accessible to different communities

9 Informed choice To share information and experiences from a variety of sources that are comprehensive, meaningful, relevant and unbiased to enable to create empowered parents and families to make informed decisions Family social and emotional support Facilitate contacts between families and their communities as a way of strengthening informal capacity Ensure that families will know how to access a range of support to support their identified needs of the family

10 The programme menu Early years event (0-2 years) Early years event for ACN (0-6 years) Learning about your child s deafness for (3 12 years) Starting school: Education rights and responsibilities (2 4 years) Starting school: Play, communication and technology (2 4 years) Sessions delivered by family and professional volunteers

11 The families Age of diagnosis Levels of deafness Location in the UK Families from BME backgrounds and communities Support structures around them in their families Interactions with NDCS and external services

12 Parent experiences What parents shared with us at the events Common themes taken from family programme events

13 Early stages - The diagnosis A range of positive and negative experiences about how parents were told about the diagnosis were shared at the events Parents commented on the process and language used by professionals in sharing the news Parents commented that they didn t get a chance to enjoy in full the birth of their child before receiving a number of hospital and audiology appointments Parents and families wanted support and guidance around how to come to terms with diagnosis

14 Support and information To know where to get the right support for their deaf child To know which services/professionals are there to support them, regardless of the level of their child s deafness To know what their rights are to the services and what responsibilities they have as parents of deaf children/young people To understand the language/terminology

15 To know about the range of options and opportunities they had for their deaf children Communication choices (SSE, BSL, Oral, Auditory Verbal) Technology Education choosing the right schools To know how services all work together

16 To date, no one had actually explained these terms and explained these graphs. This lady told us more in an hour than we had been told in audiology in 2 years really invaluable I didn t know where to get the information from or what I was looking for. I searched for deafness online in Google and came across lots of information I didn t know where to start

17 94% of parents attending our events for families with newly identified deaf children said they now feel more confident about parenting their child. The Weekend gave me hope. It made a big difference to us. Helped us understand more about deafness

18 Networking To know where to meet other families with deaf children and young people face to face and online To understand and know about CHSWGs and Parent Carer Forums which can support parents and family members. To have opportunities to meet deaf adults.

19 One of the best things for us was when we joined a parents support group. It was such a relief to be able to talk to people who understood what we were going through. Even more important was to be able to see deaf kids older than our daughter we were amazed to see just how normal they were. We knew then she was going to be ok.

20 It was nice to hear the deaf children s experiences. We were pessimistic at diagnosis. Deaf role models have proved to be an inspiration to know that deafness can be something to be proud of and you can do and achieve almost everything. Opens doors as opposes to closing them I definitely came away feeling a lot happier. I was more positive about the future and I was well informed

21 No such thing as a silly question Some of the questions that parents ask our deaf volunteers: will my child ever be able to ride a bike? will my child have a relationship? should we use sign language with our deaf baby? how can we make sure my child is included within friendship groups? Will they make friends? Are my child s additional needs a result of their deafness? How do I tell other people?

22 It was a fantastic service, and the biggest surprise was the enormous impact of meeting other parents. I had attended the event because I wanted to learn as much as I could from professionals, but it was the impact of parent-to-parent support that was so powerful; I no longer felt so alone and was able to think positively about being a parent of a deaf child.

23 In summary Families attend our events for many different reasons and for many they form lifelong friendships and leave knowing they can turn to others who understand how they feel. We must never assume that parents/families understand all the information we give them We must remember each family is unique and have their own individual information and support needs our approach and support should reflect that.

24 Thank you for listening For further information about the family programme, please contact: Valerie Copenhagen Family Programme Manager