Our Voice Parent Forum

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Our Voice Parent Forum Progress Report March
2009
I believe that professionals go into the
caring professions because they want to help us
and then they find that they have to defend a
system that they have no control over. I feel
like the system plays us off against each other
and makes us enemies and wastes all our energies.
But professionals are our natural allies and when
we work together we are very powerful. Parent

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Content

• Purpose
• Background
• Approach
• Parent perceptions What is working well and
  what needs to change in Education, Health,
  Housing, Social Care and Leisure
• The Forum
• How the Forum wants to work with service
  providers
• Summary

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Purpose

• The purpose of this report is to provide an
  up-date on Our Voices progress in formalising
  its position as a Parent Forum by
• 1. Providing a summary of parents priorities for
  service improvements in terms of
• Education
• Health
• Housing, Social Services and Leisure
• 2. Summarising how parents would like the new Our
  Voice Parent Forum to operate
• 3. Making recommendations for Joint Working
  (parent participation) between the new Our Voice
  Parent Forum and service providers.

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Background

• Enfields Joint Service for Disabled Children,
  Enfields Parent Partnership Service, Enfield
  National Autistic Society and Our Voice were
  successful in securing a bid for Our Voice to
  formalise its position as a Parent Forum under
  the Governments Aiming High for Disabled
  Children agenda. Our Voice was awarded the full
  sum of 3300 for January to March 2009.
• Aiming High for Disabled Children aims to ensure
  that in each local area parents are involved in
  strategic decision making about the provision of
  services that their disabled children need.
• Involving parent carers at all levels of planning
  and developing services is the best way of
  creating cost effective and responsive services
  that work for families.

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Approach - overview
3 Phases
Phase 2 May/June/July
Phase 1 February/March/April
Phase 3 September onwards
Create/Establish Joint working with Services to
agree parental involvement on priority
decision-making bodies Database and
newsletter Develop Parent Forum - remit,
operational agenda, two-way communication Appoint
and train reps
Develop Establish Regular Meetings with Service
Providers Review Effectiveness Lobby for change
where appropriate Develop one-stop shop
web-site Fundraising
Consult with parents Registration forms and Our
Voice information sent to parents of children
with Statements/Number on School Action Plus 3
Parent meetings to assess priorities for change
and ideas for the Forum
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Current parent perceptions

• Overall, parents feel that they need to fight for
  everything for their child education, heath,
  social care, housing. They feel they find out
  more from other parents than professionals.
• There is some cynicism and lack of trust,
  particularly around mainstream parents and their
  perception of SEN services. Note, at the time of
  this report the majority of parents we have
  spoken with have children in mainstream
  provision.
• It will be important for Our Voice to motivate
  parents to become involved with the Forum. We
  need to ensure that their involvement in
  consultations and training and at decision-making
  levels really makes a difference. This will be
  achieved with support from service providers
  enabling parents to influence a few quick wins ie
  where they are listened to about a specific issue
  that needs to change and then that change takes
  place quickly.

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What did parents tell us? What is working well?

• Services cited as good were
• Pre-School Support
• Capag and Cheviots holiday schemes/Activenture/Cro
  ss Roads
• Tiger Team
• ENAS
• DAZU
• SALT
• Jo Atree, when available
• Transport this was considered vital by most
• After-school clubs
• LDA funding for child care

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What did parents tell us about Education?

• Parents felt particularly strongly that whilst
  Education was arguably one of the most important
  aspects of their childs future, this was the
  biggest area of concern. Again, a reminder that
  the majority of parents at these early meetings
  (February and March) had children in mainstream
  schools, although there were a few in special or
  pre-school. Issues were particularly focused
  around
• SEN Services and their decision-making process,
  concerns about the Panel process.
• Statementing process complicated with a lot of
  bureacracy and too many reception age children
  with high level needs in school unsupported.
  Attending only half-days against parental choice.
• Mainstream SENCOs and staff often lack
  understanding and empathy. Dont offer sufficient
  relevant information.

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What did parents tell us about Education? (cont)

• Mainstream school rules/polices at odds with
  childs particular needs and could be unlawful
  such as nappy changing and food warming.
• Perceived need for training in alternative
  teaching methods appropriate for disabled
  children with a range of conditions.
• Insufficient SALT input. Parents and schools
  complaining about this yet SEN services saying
  that SALT provision in Enfield is not perceived
  as a problem by schools and parents generally.
• Lack of real action to prevent bullying (other
  than policies on paper).
• Lack of support and information during transition
  phases (pre-school to primary, primary to
  secondary and secondary to college/adult
  services).
• Lack of education of young adults regarding such
  things as sex and relationships.
• Need to promote more sharing of resources, skills
  and knowledge between special and mainstream
  schools.

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What did parents tell us about Health?

• Parents generally felt that when services were
  provided, these were good. However, parents cited
  a lack of resources and long waiting lists were
  real problems. Additional issues were
  particularly focused around
• Resources cited by professionals as a reason for
  poor service when it is often the case that a
  number of professionals chase up appointments
  and/or equipment and get back to parents and
  others do not.
• Lack of understanding of dealing with children
  with disabilities in some general hospitals/GP
  surgeries/health professionals.
• Cost concerns around car parking, particularly at
  hospitals (but elsewhere also) when there are a
  significant number of appointments. Insufficient
  number of blue badge bays.
• Perceived lack of parental choice/control eg it
  is parents who suggest that a parent might want
  to get a second opinion or investigate an
  operation offered by a hospital, say Great Ormond
  Street.

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What did parents tell us about Housing, Social
Welfare and Leisure?

• Parents being told their unsuitable accommodation
  is suitable for adaptation even when the familys
  living room needs to be converted to a bedroom.
• Need for a parent rep to sit on facilities grant
  decision-making panels due to limited number of
  children being dealt with under this system ie
  mainly elderly.
• Lack of parental awareness about what social
  workers do.
• Long waiting lists following assessments.
• Lack of counselling and support/training for
  parents, the children themselves and their
  siblings.
• Lack of appropriate leisure activities for 5-11s
  and young teenagers and adults.
• Limited places in after-school clubs/holiday
  schemes.

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Our Voice Parent Forum Aims

• Work with providers to improve services by via
  parent representatives sitting on planning and
  decision-making bodies, training professionals,
  interviewing key staff and responding to
  consultations.
• Provide information advice/support to parents
  (via professionals and trainers attending forum
  meetings), sign posting them in the right
  direction.
• Providing support to complete applications and
  paperwork such as DLA, Statement process, Bus
  passes etc.
• Provide training and counselling for Parents,
  siblings and disabled children.
• Provide a social network for parents/siblings/disa
  bled children.
• Medium through which to reach Black and Ethnic
  Minority groups.

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The Forum Structure Meetings

• Parent Representatives on Enfield Service
  Provider decision-making bodies (e.g. SEN Panel
  Review Group, SEN Inclusion Strategy Group,
  ESWRAP, Childrens Trust)
• Termly Parent Forum meetings where issues raised
  are noted for reps to take to decision-making
  bodies
• Coffee mornings, work-shops, guest specialist
  speakers/advisors
• Creche facilities for parents to be able to
  attend above meetings
• Councillor surgeries/Joint Service surgeries
• Reps at SENCO meetings
• Fund raising events
• Organised trips

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The Forum Communication

• Create an up to date website/ one-stop shop
• Newsletter via mail and email (once a term) to
  feedback on developments lobbied for by the Forum
  as well as othrr local information
• Chatroom/message or information board
• Email information/flyers
• Meetings during school hours and evenings
• Provision of leaflets and brochures on services
  and benefits

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How Our Voice wants to work with Education

• Parent Representative on SEN Panel Review group
  and on SEN/Inclusion Strategy Group.
• Training SENCOs and professionals in inclusion,
  disability awareness and how to work with
  parents.
• Responding to consultations.
• Creating opportunities for parents to attend
  meetings with SEN services staff.
• Enabling a reduction in unnecessary tribunals by
  encouraging a transparent decision-making
  process, more face-to-face communication, and
  eliminating potentially unlawful practices.
• Working with Special and mainstream schools in
  terms of sharing resources with schools and
  parents.

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How Our Voice wants to work with the PCT

• Parents sitting on Childrens Trust and PCT
  boards.
• Lobbying for funding for OT (via Councillors?).
• Training health professionals, Local hospitals/GP
  surgeries etc in disability awareness (Model
  Pre-School Support and Jo Attree approach).
• Inviting specialist speakers to Our Voice
  meetings to enable them to see several parents at
  one time rather than individual ways of
  communicating advice eg talks on continence,
  manual handling, challenging behaviour.
• Look at ways of improving parking at hospitals
  for parents of disabled children and of fast
  tracking children who attend too many
  appointments, at GPS, A and E etc.

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How Our Voice Wants to work with Housing, Social
Services and Leisure

• Parent reps to sit on decision-making bodies for
  example transition planning, commissioning
  groups, bodies relevant to housing disabled
  children, facilities grant panel and so on.
• Training professionals re issues affecting
  families of disabled chdilren such as the
  facilities grant assessors.
• Recruiting key staff.
• Involvement in commissioning and with providers
  to ensure schemes are suitable for a range of
  disabled children
• Working with services to streamline systems to
  ensure parents receive a quality service within
  given resources.
• Ensure parents can contact service providers
  directly via e-mail rather than relying on an
  old-fashioned system of one number suits all.

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Summary

• Progress to March 2009
• As at March 2009 we have a database of 250 new
  Our Voice Parent Forum members plus at least
  100-150 existing ones that will still need to
  sign up to the new Our Voice Parent Forum.
• We have met with in excess of 40 parents via
  three meetings to explain what parent
  participation is all about including providing
  information about the impetus from the Aiming
  High Agenda and models of good practice from
  other boroughs. We have used those meetings to
  find out from parents what the priorities are in
  terms of service developments, how they want to
  forum to operate and whether they want to
  volunteer any support. We are meeting parents in
  special schools during April and May.
• EDCM have asked us to track short breaks for the
  next three years,
• SEN have asked us to comment on a leaflet around
  transition
• Working on next newsletter, website and
  recruiting new Development Coordinator
• IPSEA workshop
• .

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Summary (cont)

• Aims for April to July 2009
• Agree at least three panels that parent
  representatives can sit on from SEN Inclusion
  Strategy Group, Panel Review Group, Childrens
  Trust and relevant Social Services, Housing and
  PCT ones.
• Parent Forum meetings with special schools during
  April and May and a meeting for all parents in
  May/June to report progress.
• Hold a joint meeting for parents and
  professionals to launch a joint commitment to
  parent participation.
• Agree process for enabling parents to be involved
  in training professionals.
• Seek support from Service providers for the Forum
  via office systems, space, meetings rooms, admin
  support, stationery, equipment or financial.
• Agree bid for 2009/2010 with partners (ENAS, PPS
  and Joint Service).