p: 0751 741 9761
e: getinvolved@pinpoint-cambs.org.uk
w: www.pinpoint-cambs.org.uk
Parental involvement network for parents of disabled
children
Notes from the Huntingdonshire Network meeting
Date:
10 February 2010
Venue:
Maple Centre, Huntingdon
Time: 10.30am – 2.00pm
Number of parents and carers: 13 and 1 apology
Facilitator: Lynn Powell, pinpoint
We began with welcome and introductions and Lynn outlined the plan for
the day.
Update on actions from last meeting
Lynn handed out an update and added:

Sandy Watkins had planned to attend today’s meeting, but had
sent late apologies due to a riding accident.

Lynn to check whether Richard Holland had advised providers not
to offer flexibility if they cannot provide it.

Lynn suggested the next term’s network meetings focused on
Individualised Budgets and Direct Payments, and other moneyrelated issues. This was agreed.
Other news
Two representatives from Hunts are on the County parent carer
participation group: Margaret Lambton and Hanna Stephenson from
Hunts Parent Carer Forum/Little Stars. The next meeting is on 23
February.
Together for Disabled Children (TDC) training opportunity on 26 February
in Ely. pinpoint has a budget to reimburse parents’ travel expenses and
pinpoint is grateful for the funding and support it receives from:
1
anyone interested in attending to book place direct with TDC and contact
Lynn about expenses.
New pinpoint leaflet available and website live for consultation during
February 2010. Lynn asked parents to help with getting the leaflets to
other parents.
Opportunity for parents to meet with EDCM Strategy Group members
and feed back on parental involvement work on 2 March at Meadows
Community Centre, Cambridge. Out of pocket expenses paid, and lunch
included. Lynn invited interested parents to let her know if they would
like to attend.
Information handouts: short breaks summary; gymnastics; SCIP clubs
and groups factsheet, swimming – funding opportunity for swimming
lessons.
Hot topic – parents’ questions
“What do we need to do to make leisure activities more accessible to
disabled children and young people?”
Parents raised a number of questions and issues and these have been
grouped into themes (some questions cover more than one theme):
Cost

Am I entitled to financial help to take my son to activities?

Can there be more free activities – cost can be prohibitive?

Why can’t my son on the autistic spectrum go to swimming lessons
and why do I need to pay more?
Access to support worker or buddy

Need someone to help with child in order to access clubs and
groups

Can they only access groups if we go with them? What happens
when they are too old for us to stay?
Inequality and discrimination issues

Why can’t my son on the autistic spectrum go to swimming lessons
and why do I need to pay more?

Headteachers in mainstream schools need to be more inclusive of
all children and siblings at groups and on residential trips.
pinpoint is grateful for the funding and support it receives from:
2

Ramsey pool – parents told need CRB; asked for Blue Badge as
evidence of disability – don’t have one!

Parents not allowed to leave building when volunteers used – issue
when have siblings

Why do disabled children not get the same summer holiday activity
options as non-disabled?
Inappropriate changing and toilet facilities

We need appropriate changing places – family changing rooms;
privacy for parents of young people with Autistic Spectrum
Disorders
Issues for siblings

Parents not allowed to leave building when volunteers used – issue
when have siblings

Why can’t the non-disabled siblings join in activities for disabled
children?
Eligibility for Aiming High for Disabled Children funding

Who is eligible?
Young people with ‘hidden disabilities’ not being recognised as ‘disabled’

Why can’t my son on the autistic spectrum go to swimming lessons
and why do I need to pay more?

Ramsey pool – parents told need CRB; asked for Blue Badge as
evidence of disability – don’t have one!
Stigma and labelling

Some parents will not access 100 hours because they have to go
through social care services.

Why is my child called ‘Looked After’ because they go to a Link
Carer? How does this make me feel: my child is looked after by
me. (It was explained by another parents that a child is called
‘looked after’ if they have an overnight stay with a Link Carer.)
Hot topic - discussion with service provider representatives
The following representatives were welcomed and introduced
themselves:
pinpoint is grateful for the funding and support it receives from:
3
Helen Phillips – Local Authority Aiming High for Disabled Children
team/Inclusion Project
Victoria Bartle – Area Youth Inclusion Worker
David Reeve – Sports Development Officer (Equity), Hunts District
Council
Berni Mueller – Community Support Service (for Sandy Watkins)
Apologies were received from Linda Simmons, Action for Children
Inclusion Project and Sandy Watkins who both sent representatives, and
from Linda Roberts, Papworth Trust. [Apologies were received after the
meeting from Lynn Hancock, Area Manager for social care.]
Issues for siblings
Parents say siblings still not receiving support – waiting list. Not getting
in at 8 years.
CamPlay is putting on family days. David said that in Hunts siblings do
join in the fortnightly ‘Active and Able’ sessions, and can join in ‘if space’
(there usually is except with archery) at the one day Sports Festival.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
Identify where younger siblings (under 8), and those on the waiting list
for young carers groups, can go for support.
Make sure when planning and developing activities for disabled children
and young people that the needs of siblings are also considered.
Inequality and discrimination issues – at local swimming pools
How can parents prove their child is disabled if they don’t look disabled?
No policy in place. Some pools have a buddy system – but has anyone
assessed it? Examples of poor and potentially discriminatory practice at
Ramsay pool with respect to swimming lessons, and positive examples
from Sawtry pool yet both managed by the same person. When want to
go for a general swim, parent told had to pay to go in even when child
was a competent swimmer: parents of non-disabled children would not
have to do this.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
Develop county-wide, clear and transparent non-discriminatory ‘rules’,
policy and practice with respect to access to swimming lessons and to
open swimming sessions for families with disabled children (including
pinpoint is grateful for the funding and support it receives from:
4
those with ‘hidden disabilities’ such as Autistic Spectrum Disorders)
which are shared with all members of staff, and parents.
Provide disability awareness training to all members of staff within
swimming pools and leisure settings.
Identify who is responsible for ensuring leisure centres and pools are
accessible to all disabled children and young people.
Inappropriate changing and toilet facilities - at swimming pools
Parents said that changing rooms are inappropriate. They do not allow
older children - or parents - privacy. Parents are asked to move away if
they wait outside the male changing rooms to check their child is OK.
Parents have to change children and young people on toilet floors
because appropriate changing tables are not provided.
Inclusion project will try to match worker to young person – more men
than women interviewed by Action for Children – and this could help.
Changing Places campaign – there is a Changing Places accessible toilet
in Grand Arcade. They have a website. Lynn to add details to the
pinpoint website.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
Provide disability awareness training to swimming pool staff which
includes an understanding of the type of support and facilities families
will need in order to access swimming pools and other leisure activities.
Provide Changing Places facilities in leisure centres and other public
places.
Parents to let pinpoint know of any clubs, groups and facilities that they
think could benefit from attending the Action for Children disability
awareness training sessions.
Eligibility for Aiming High for Disabled Children funding
Parents will still uncertain how the 100 hours entitlement worked. There
were questions around how to access it; what services were available;
whether accessing Aiming High activities would affect those who already
receive social care support.
Helen explained that the automatic 100 hours entitlement for children on
Higher Level DLA Care component can be accessed through selfassessment by phoning the Contact Centre (leaflets were handed out). If
families are already receiving support from social care services they need
to contact their social worker to discuss how they can use their hours to
access the new Aiming High services. If after an initial visit it is felt a
pinpoint is grateful for the funding and support it receives from:
5
family needs more than 100 hours of support, Helen will refer them on to
social care services for a core assessment. If they do not meet the
criteria for automatic entitlement, Helen suggests they still call the
Contact Centre to speak to social care if they think they might be entitled
to some support.
Parents asked about time limits given the letter some had received about
Aiming High funding ending in March 2011, and since some have been
waiting some time to access a social care support, or to get a reply from
their social worker. No-one present could respond to issues around social
care delays and Lynn will email Lynn Hancock for feedback.
We talked about using cambridgeshire.net website and the pinpoint
website to search for non-specialist groups. The SCIP clubs and groups
factsheet was given to parents, along with a summary of the new
specialist activities being provided by Voluntary and Community Sector
providers who had successful Aiming High for Disabled Children bids.
Lynn has asked providers to let her have details of activities, and how to
access them, to add to the website. The information is coming through
slowly.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
Eligibility criteria need to be better understood by frontline workers.
Social care services need to respond in a more timely way to ensure
parents can access current options available to them through Aiming
High.
Clearer guidelines for parents on the routes to access Aiming High
funding and the options available: adapt the flowchart being distributed
to frontline workers.
Look at using health visitors and other early years workers to help bridge
gap into social care services for families who might not otherwise know
they are entitled, or might not want to access social care services.
Access to a support worker or buddy
Parent thanked David for the disability sports that he helps organise but
asked why their child is not then allowed to join a club, such as archery.
David explained that the archery coach is not part of a club and all young
people have to do an introductory session due to dangers.
We talked about the new facilities planned for Grafham Water. It was
agreed that Grafham seem happy to have groups, but parents wanted to
know what was being done to help them access Grafham as a family:
this would need staff to support as it can’t be the parent. Also the parent
pinpoint is grateful for the funding and support it receives from:
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doesn’t always want to be there, and the young person doesn’t always
want their parent there! Also sissue if parents have to organise this
through a social worker. Given Grafham Water have got all this Aiming
High money, why are there still barriers to access such as young people
needing a carer to go with them. Activities are also sometimes cancelled
as only 1 person has booked.
Grafham had been invited to attend but Lynn was not sure if they had
got the email as she hadn’t had a response. Victoria explained that it was
her role to support young people aged 13+ to access clubs and groups.
For example, they are piloting a club at Hertford Secondary Support
Centre for 13-19 year olds, or up to 25 for those with learning
disabilities. She is visiting Grafham soon and offered to ask about nongroup visits and to feed back via pinpoint.
Leisure Centres can apply through Early Years (Jackie Baker) for funding
for support workers but may be age limits on this: 5 - 15 years?
Parents asked if they have a right to ask about 1:1 support workers’
qualifications. Berni suggested this was a basic right.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
Inclusion Project to provide buddies to attend introductory sessions so
that young people can access clubs and achieve their full sporting
potential.
Commissioners/service managers to send information to pinpoint on the
support available to children and young people to help them access
activities for adding to the pinpoint website.
Inequity and discrimination issues
Limited access to sports and activities in the holidays.
David said that parents are represented on the Hunts Disability Sports
Forum. No-one present knew about the Sports Forum and it wasn’t clear
how issues were being gathered from a range of parents, or how parents
could feed in to this group.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
The Hunts Disability Sports Forum needs to include a representative
range of parents. Parents need to know how they can feed into this
group and the Forum needs to report back to parents on outcomes.
Leisure services should ask parents who use their services what activities
they would like during the summer holidays.
pinpoint is grateful for the funding and support it receives from:
7
There needs to be a shared understanding between families and service
providers, including mainstream schools, about what is meant by
‘inclusion’ and ‘disability’.
There should be regular training for parents on disability rights and
access issues so that they can challenge providers appropriately if they
feel their child is being discriminated against.
Cost and transport issues
Parents felt cost and transport issues were stopping some families from
accessing activities. Issue of costs of available leisure offerings
important, particularly if it’s a family day or sibling activities.
During the summer holidays, David said Sports and Leisure offer courses
which are subsidised by the District Council, and some roadshows are
free.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
More free activities to be provided, or free places for carers and siblings,
so that the disabled child can still go.
More help with transport costs - what about a community pick up?
Access to activities being limited by actual age is excluding some young
people from accessing activities that may be suitable for them
One parent had a 30 year-old daughter and felt she could benefit from
some of the activities but did not meet the age criteria.
Another commented that many of the new Aiming High activities were for
11+ and their child was too young. She had received the letter from
Adrian Loades telling parents the Aiming High funding would stop in
March 2011 and that eligibility criteria might need to change to reflect
resource pressures, and asked whether her child would therefore miss
out on Aiming High money.
Helen explained that when they were looking at how to use Aiming High
funding, a gap in activities had been identified for the older age group.
Action needed to make leisure activities more accessible to
disabled children and young people and their families:
Access to activities should be decided by age appropriateness and not by
actual age.
There should be more flexibility around age limits.
Future network meetings
pinpoint is grateful for the funding and support it receives from:
8
Lynn asked for feedback to help pinpoint decide how to plan and develop
future network meetings. In particular, pinpoint had been asked to
gather feedback from parents on the use of vouchers.
The next network meetings are planned for week beginning 18 May and
Anita Hewson, who is the Local Authority lead for Individualised Budgets
within Children and Young People’s Services, has agreed to attend.
Evaluation flipchart
Liked this 

voucher system I think is a good idea

found the pinpoint meeting very useful, glad I came

excellent meeting, thank you

found it very helpful. The factsheet detailing activities available is
very helpful. Whole day is good just to air views and meet other
parents.

I think that the vouchers demonstrate an appreciation of the carer
which is a good thing. Carers are not greatly valued in society so
this is good!

I think the meeting works well, but professionals don’t really have
answers – just need to ask lots of questions to make them aware.
Didn’t like this  - nothing added
Keep/add this 

Please keep voucher scheme

Yes I think vouchers to parents should be continued. Their input is
vital and their income likely to be low.
Lose this X – nothing added
__________________________________________________________
Facilitator’s feedback
This was another very participative meeting. A large number of the
parents had children on the autistic spectrum, and there are particular
issues and challenges to overcome for these families to be able to access
mainstream leisure activities.
A representative from PACAS – a support group for Parents and Carers of
Autistic Spectrum children and young people in Ramsay – attended and
has taken information to share with members.
pinpoint is grateful for the funding and support it receives from:
9
There is still a lack of clarity around eligibility issues amongst parents
and frontline workers, and on what new services are available. There is a
sense that the Aiming High funding will have ended before these are fully
resolved and the eligibility perhaps changes. We have added the
information sent to us to the pinpoint website, but opportunities to meet
face-to-face have proved particularly beneficial to discuss concerns, since
parents say they cannot always get hold of their social worker.
I have suggested to Helen that we try to add a ‘frequently asked
questions’ section to the pinpoint website.
A summary of the actions is attached as Appendix 1.
Actions
1. pinpoint to feedback to EDCM Strategy Group on issues raised by
parents (and their views on the use of vouchers) and ask if
members can help with any of the actions identified.
2. Lynn to contact Hunts network representatives about county group
meeting on 23 February, and EDCM parent participation lunch on 2
March 2010.
3. Victoria to check with Grafham Water about access for families.
4. David to follow up on issues raised by parents about access to
leisure centres/pools, and let us know how these can be fed into
the Disability Sports Forum.
pinpoint is grateful for the funding and support it receives from:
10
Appendix 1: Hunts parental involvement network
Summary of actions needed to make leisure activities more
accessible to disabled children and young people and their
families:
1. Identify where younger siblings (under 8), and those on the waiting
list for young carers groups, can go for support.
2. Make sure when planning and developing activities for disabled
children and young people that the needs of siblings are also considered.
3. Develop county-wide, clear and transparent non-discriminatory ‘rules’
(policy and practice) with respect to access to swimming lessons and to
open swimming sessions for families with disabled children (including
those with ‘hidden disabilities’ such as Autistic Spectrum Disorders)
which are shared with all members of staff, and parents.
4. Provide disability awareness training to all members of staff within
swimming pools and leisure settings.
5. Identify who is responsible for ensuring leisure centres and pools are
accessible to all disabled children and young people.
6. Provide disability awareness training to swimming pool staff which
includes an understanding of the type of support and facilities families
will need in order to access swimming pools and other leisure activities.
7. Provide Changing Places facilities in leisure centres and other public
places.
8. Parents to let pinpoint know of any clubs, groups and facilities that
they think could benefit from attending the Action for Children disability
awareness training sessions.
9. Eligibility criteria need to be better understood by frontline workers.
10. Social care services need to respond in a more timely way to ensure
parents can access current options available to them through Aiming
High.
11. Clearer guidelines for parents on the routes to access Aiming High
funding and the options available: adapt the flowchart being distributed
to frontline workers.
12. Look at using health visitors and other early years workers to help
bridge gap into social care services for families who might not otherwise
know they are entitled, or might not want to access social care services.
pinpoint is grateful for the funding and support it receives from:
11
14. Inclusion Project to provide buddies to attend introductory sessions
so that young people can access clubs and achieve their full sporting
potential.
15. Commissioners/service managers to send information to pinpoint on
the support available to children and young people to help them access
activities for adding to the pinpoint website.
16. The Hunts Disability Sports Forum needs to include a representative
range of parents. Parents need to know how they can feed into this
group and the Forum needs to report back to parents on outcomes.
17. Leisure services should ask parents who use their services what
activities they would like during the summer holidays.
18. There needs to be a shared understanding between families and
service providers, including mainstream schools, about what is meant by
‘inclusion’ and ‘disability’.
19. There should be regular training for parents on disability rights and
access issues so that they can challenge providers appropriately if they
feel their child is being discriminated against.
20. More free activities to be provided, or free places for carers and
siblings, so that the disabled child can still go.
21. More help with transport costs - what about a community pick up?
22. Access to activities should be decided by age appropriateness and not
by actual age.
23. There should be more flexibility around age limits.
pinpoint is grateful for the funding and support it receives from:
12