Our Voice – Special Schools Report

1
Our Voice Special Schools Report

• OUR VOICE PARENT VOICE

2
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

3
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.

4
Current Support
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.

• 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

5
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 childs 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 didnt
  eat during the school day.

6
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

7
What did parents tell us about Education? contd

• Training
• Parents feel it would be beneficial all round for
  more personal skills/training for staff who have
  little understanding of their childs 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

8
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 AE to understand our children and to
  treat them for what they have gone to AE 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 doesnt 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 1-2-1
  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

9
What did parents tell us about Health?

• Diet
• Parents would like advice on diet they feel that
  this plays a role in childs 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

10
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 arent 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

11
Short Term Goals

• One Stop Shop for information on whats 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

12
Long Term Goals

• Improvement in housing
• Increase in carers allowance
• Disability Living Allowance to fill form in
  once every 5 to 7 years for those with long term
  illness

13
What works and what doesnt

• 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 whats
  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 whats valid and whats not
  valid.

14
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?

15
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

16
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 childs 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.