Background Special Schools visited Current Support What parents told us about Education, Health, Housing, Leisure and Social Care Short Term Goals Long Term Goals What works well and can be improved Questions raised Excellent Ideas offered
Special School Visits Over a period of 4 months we visited a number of special schools in the borough in order to get parents perspectives on how services were working for them and their disabled/special needs child. These were Waverley, Russet House, Westlea and Durants. We would like to thank parents for the support they offered Our Voice by attending and taking part. We discussed three main areas: Education, Health, Housing Leisure & Social Care. Parents input into these sessions was very informative and high lighted areas of good practice, areas that are in need of attention and offered new ideas.
Current Support Pre-school support service Play and movement group Early support Key workers After school clubs Dazu – youth club for children with special needs and their siblings Capag – during holidays no siblings allowed anymore Cheviots : after school, weekends & half term Holiday play schemes Buckets and spades Overnight breaks Crossroads Direct payments Haven House Social workers Transport Council offer free trampolining and swimming (spaces are limited) Autistic society (run events in Tottenham) Monkey business Below is a list of the different types of support that parents are currently receiving in the borough – it is fair to say that some parents are getting more than others and some are getting very little or no support. One parent gave an analogy that we were ‘like pirates looking for treasure’.
What did parents tell us about Education? Speech and Language/Communication Although Speech and Language comes under the ‘Health umbrella’, it is a top priority for all parents when discussing education. The lack of SALT therapists and the small amount of SALT sessions that are offered to their children is felt to be unacceptable. Parents would like to see the development of communication within the child’s peer group. Lack of funding is no excuse for the borough falling short of providing appropriate communication aids. In some schools older children are relied upon to communicate back to parents about their school day – parents feel that the school book needs to come home from school too. Parents would appreciate more communication from school regarding what their child ate and didn’t eat during the school day.
What did parents tell us about Education? Mainstream/Transition Parents would like to see more inclusion for their children into mainstream – kids learn from kids, more mainstream mixing will help integrate into daily life. Transition from pre-school to school – key workers have been extremely helpful and supportive for parents in helping them to cope with all the different professionals that come into their lives when their child goes to school Transition from Russet house to mainstream – e.g “Suzanne has been excellent” Links to post 16 education Waiting list for school places too long. Problem arise when authorities put a child into mainstream first instead of early intervention. Statements to be quicker and not to have to fight to get one
What did parents tell us about Education? – cont’d Training Parents feel it would be beneficial all round for more personal skills/training for staff who have little understanding of their child’s needs They would also welcome workshops for themselves on personal care: how to toilet train, learn to sign and to feel confident undertaking a physiotherapy session with their child at home. Resource Units – need to be developed and well staffed. Try new things ( this may already be happening in some schools) Taster courses for children e.g music therapy Opportunity to rent out instruments to see if child likes it or not Access to services music with adaptations
What did parents tell us about Health? Medical Parents feel very strongly that there should be a school nurse present for duration of school day They would like to have trained first aiders in schools at all times School to use common sense when dealing with a child who has been taken ill They would like for hospital staff/doctors & nurses at A&E to understand our children and to treat them for what they have gone to A&E for not to go into an elaborate discussion about the birth and diagnosis. The majority of these children have been to Great Ormond Street for that. Children given medication which doesn’t solve the problem – some need to receive alternative therapies and parents would like these areas investigated further Therapy Speech and language therapy : there is a severe shortage of SALT in the borough, parents would like regular weekly sessions and for this to be incorporated in the class room as well as sessions More physiotherapy sessions More occupational therapists – would give children proper seating, changing tables etc at school, school settings would be properly assessed for health and safety. Waiting list for equipment would be reduced
What did parents tell us about Health? Diet Parents would like advice on diet –they feel that this plays a role in child’s behaviour Some children suffer from digestive problems due to anxiety (further investigation would be welcomed) Why do they need to ask GP for referral to specialist dietician Children to be assessed for allergies Care for carers Counselling to help parents cope and understand from the onset not when they are at breaking point Care plan provided for children – short breaks, equipment, sessions with professionals Information on how to get a social worker/key worker
What did parents tell us about? – Housing, Leisure & Social care Housing Financial help for home owner needing to move to bigger home Housing waiting list too long this needs to be reduced and when house finally offered not suitable in many cases Basic adaptations not met Safety issues e.g. Cooker switches, lights, door handles Leisure Access to sport and leisure activities with proper equipment e.g hoists and changing facilities Ability to go on holidays with family knowing that there is support available at the chosen destination Specialist Equipment e.g chairs, beds, stander, hoists, changing facilities etc available at holiday destinations for hire /rent Better disabled parking at hospitals Carers Increase carers allowance Support for carers/parents - need help to help care for their children. Parent/carer pampering – if they aren’t looked after mind body and soul they have no energy left to care for their disabled child Not enough caring professionals at the other end of the phone, there needs to be greater understanding amongst professionals of the range of different days a child might have Reduce the waiting time for social services assessment Social workers can be good or bad it all boils down to the individual
Short Term Goals One Stop Shop for information on what’s available for special needs children Information available for parents at onset of diagnosis SALT – is a real issue for parents and schools this area needs dramatic improvements asap Ask local swimming clubs to improve disabled changing facilities Waverley swimming pool open at weekend and parents are prepared to pay small charge for usage Text communication when meetings are taking place No fizzy drinks machine crisps or chocolate machine in school. Remember that often English is not first language
Long Term Goals Improvement in housing Increase in carer’s allowance Disability Living Allowance – to fill form in once every 5 to 7 years for those with long term illness
What works and what doesn’t Good practice Befriending (Autistic society) Paediatricians monthly clinic at school Counselling at Russet House excellent - (Claire Silver home school liaison teacher) Westlea school excellent work on self esteem & the after school clubs are very successful Not so good practice Given place at play scheme but no transport to get there Parents do not receive information about what’s available, this information can also be contradictory to what someone else has been told, there seems to be no yard stick to measure information regarding what’s valid and what’s not valid.
Questions raised? Do boroughs work together to link information? Does a parent qualify for short breaks when their child attends school in Enfield but lives in a neighbouring borough?
Excellent Ideas Offered At holiday play schemes teach children how to cook, dance, play an instrument, swim, play football Offer activities that allow their children to shine and tap into their talents with sessions like drumming, horse riding and music Learn life skills that will enable them to be independent Choir group for all Offering support to siblings through friendship, brownies, girl guides, cubs and scouts. After school clubs open to all regardless of borough Youth group open to all needs and not specific groups Young carers support group in Enfield – a good model that is already working is one group based in Barnet More short breaks
Summary Enfield provides a good service and continue to work hard to offer good services to parents and their families. Parents do appreciate the hard work that is involved in providing the existing services and in many cases parents feel that they are well catered for with their needs met. In some cases the parents would like to know that they are listened to and are understood by the decision making bodies. They would also like to feel that their input has been respected and valued. In short there are a lot of concerned parents out there wanting the best for their disabled child just like any other parent, but the stark reality of this is that they have to work extra hard to get what they need for their disabled child which is their child’s basic right as a member of society. There are some tired, worn out parents whose energies are low from having to work extra hard emotionally and physically and having to bear their souls every now and then to get the support that require to keep going as an individual, as a couple, as a parent and as a family unit. That said, when providing an open forum for parents, it is acknowledged that the balance of discussion can swing more towards the negative than the positive.