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Fulfilling Potential – Include Us In - Friday, 2 March 2012
Record Sheet 2
These responses are from parents and carers of individuals with disabilities,
representatives from the wider disabled community – individuals and
disability organisations; parent support groups; employers and Trustees and
staff of Linkage Community Trust.
Theme one
Question
Realising aspirations
What ideas do you have that could make a difference to you getting an education,
getting a job or being able to live independently?
The right services in place
 Have services in place i.e. care, education, employment, transport,
independent living, accommodation that fits my needs, with appropriate
support including finance. Each should be right for my needs at a price my
budget would cover.
 The Government need to realise that it is a lifelong challenge and a lifelong
commitment. It requires a lifelong structure.
Fair and consistent funding
 There needs to be funding in place to support the aspirations of our young
people.
 There also needs to be continuity of service provision.
 There needs to be fairness across counties.
 There needs to be clarity about funding when individuals are transferring
across services.
 Clear eligibility criteria.
 Money should be ring fenced for SEN in schools.
 Single plan – School Action / Action Plus – not all children have same level of
services and this needs addressing.
 Local authorities not allocating funding from Government appropriately.
 Personal budgets used as excuse to reduce money spent on people.
 Spending money on special education saves money in the future.
 A disability assessment process that is not degrading.
 Have funding in place that allows a disabled person to live a life without
constant anxiety over money.
Personal choice – the right to exercise choice about the type of education that is
most suitable for my child.
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“I have always had to fight for my daughter’s education. The authorities
wanted to send somewhere totally inadequate. We said no and got Linkage.
We should have the choice.”
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Shoehorning people into mainstream education rather than meeting
individual needs is wrong.
“I would like not to have had to move my daughter 200 miles away to attract
the education and support she now receives in Linkage.”
Knowing your rights. People have a battle to find out what their rights are.
They don’t know until they ask and many don’t know what questions to ask.
Parents not given enough information about options post school.
Connexions now run by local authority – not independent.
Parents find it hard to get information about DLA. Need to separate the
provision of advice from the provision of funding – if the same body does
both, can be conflict of interest.
Information about education provision
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There is no central point of information which lists all the options available.
Schools are not providing enough support to help young people to move on
to the most appropriate college.
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All parents say it’s difficult to find what’s available.
Information about what opportunities and support are available
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Everything is a fight and shouldn’t be so.
“I voiced my opinions when my daughter was at school. I was told I wouldn’t
get anywhere. I had to fight for a future for my child.”
You have to shout loud and fight for everything.
It’s all about money.
It’s difficult for foster parents and carers to access systems and services.
More places like Linkage who offer specialist education, care and employment
services - if every person with support needs could access a place like Linkage, they
would have a chance in life.
 The integration of education, care and employment services is a huge factor
in enabling personal development, growth, purposeful work and fulfilment.
Realising potential means different things to different people and therefore involves
all types of provision. For example, people with LD prone to ageing conditions e.g.
Alzheimer’s. Individual packages of care and support are available to some extent but
more needed.
Social care
My daughter gets out and about and does what she likes. She can now go out
independently and has a boyfriend. She swam at the Special Olympics and she is
happy. Being supported by social care enables her to be happy, have a varied life and
do things – purposeful activity – every day.
Encouragement, promoting independence e.g. using public transport.
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Single assessment extended throughout a lifetime.
Support to learn new skills and to try things out / making mistakes
Back up plans and availability of specialised support services if things go wrong e.g.
psychological support, counselling, advocacy.
Single point of contact with local authority who can signpost where an individual
needs to go.
At the moment, the power lies with the local authority but it needs to be with
individuals and their carers.
Personal budgets
Without a personal budget, people can’t go out, can’t access services and would have
no quality of life. The closure of day centres will affect quality of life too regarding
availability and cost of services, fees and funding.
Incentives and opportunities to work.
“Our son has always wanted to have a paid job from before he left school. It is
through Linkage this has been achieved. This has given him more pride and
confidence and has also shown – in an industrial setting – it is possible to work as
part of a team and be accepted as part of that team. This also leads to a changing of
attitude of the rest of society.”
Employers need to be educated and helped to offer opportunities for disabled people
“My son wants to put on a shirt and go to work but employers can be the problem.”
Supported employment can be the way forward.
There needs to be incentives for employers and training available.
It would be helpful to have an advocacy service within employment.
Public transport needs to improve to give access to services and employment
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A disability travel line to book tickets or passes for transport.
Assisted rail travel – parents have stories of ‘losing’ young people who got on
the wrong train or who could not cope with an unexpected change made to
their travel plans out of their control.
Learning disabled people need mobility allowance.
Problems with taxi companies sometimes.
Improved school transport required.
There needs to be a register listing number of NEETs of people with LDD so there is
transparency.
Supported employment services
 These need appropriate funding to support disabled people into work.
 Supported employment should be focused on individual’s strengths and used
to develop these.
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Smaller employers can be more supportive and able to offer more long-term
employment – right person for right job.
Dissemination of good practice in supported employment, for example:
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Ben’s story of being supported into paid work through the SHIEC project
– Sustainable Hub of Innovative Employment for people with learning
disabilities who have additional complex needs.
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The Priory Hotel, Louth, where two service users currently have paid
work which builds on their strengths, abilities and confidence with
positive support from the hotel owners.
More apprenticeships
A Linkage former student has just applied for and gained a Business
Administration apprenticeship with York Council.
Additional support is needed for people with LD to access work. One way
forward can be through voluntary work. Support with social skills, travel and
on-the-job support also needed. Problems don’t just happen in the first six
weeks – there needs to be an accountable person provided by employer
acting as mentor / buddy.
Organisations need to be creative with funding for individuals to enable access to
education and employment.
Better access to buildings and transport for all needs
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More minibuses required with tailgates, wider doors, ramps etc. to
accommodate wheelchair users.
Examples of wheelchair users not being able to access doctor’s surgery
Skilled care
 “We are both delighted and tremendously impressed by the supremely
skilled care he receives at Linkage.”
 More and better respite provision is needed. Respite taken away equals loss
of independence.
Disincentive to work – through Government taking away benefits from disabled
people when they move into employment.
Specialist provision – schools and colleges give children and young people a better
start in acquiring skills for the long term.
Getting employers to listen – that it is a positive move to employ staff with a
disability. Initial support and awareness are the main things – give someone a chance
and that person may surprise you.
Peer support in the workplace – disabled person supporting another disabled person.
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We shouldn’t rely on volunteers to support disabled people into new opportunities
when there is pressure on them to find paid work.
Support in the early years develops skills for life-long employment / community
access.
More dignity and respect from hospital staff.
 Nurses should learn Makaton.
 A service user at Linkage could not have an X-ray as staff could not straighten
his leg.
 Good medical support.
The right environment at the right time
“ I understand the push towards supported living and individuals having their own
tenancies, but this won’t work for everyone.”
Question 2
What would help you manage better at times of change in your life?
Continuous support and understanding by people who know the individual and by
professionals who understand their needs and condition.
Consistency of support staff
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1:1 support available when required.
Keyworkers - consistent keyworker / transition support from school to
college.
Right support at right time
“My son has found it easier as he has got older. He really struggled in mainstream
primary school but it has been easier in a specialist college because they recognise
his needs.”
Talking about it with staff members
Sometimes staff are so involved in paperwork, this detracts from hands-on work.
Feeling safe and secure
 “My daughter has felt safe and secure in the settings she has been in and this
has enabled her to take change in her stride.”
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“My daughter is in a group home. She loves it. I keep asking her if there is a
vacancy for me there. She benefits from being in a group. There is another
house (group home) next door and flats nearby so there is lots of opportunity
to interact with others, which really helps her.”
Change in bite-sized pieces.
“Our son likes structure and change needs to be in bite-sized pieces which living in
Linkage has given him. He accepts changes to staff and college as these are slow in
rotation, but the stability of his home and room are constant.”
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Awareness raising
Organisations such as Linkage need to inform employers and public on issues such as
behaviour differences to overcome barriers.
Communication
 Parents need to be informed and communicated with more. Assumption is
made that son passes information to us but this is not the case.
 Communication should be sensitive. Some service users scared to open
brown letters which they associate with DWP because of anxiety about cuts
in funding and services.
 Government Ministers should talk to parents and children.
Advice and information
 Educate and inform parents from start of life e.g. in maternity wards – on
learning disability and what that may involve as well as the type and level of
support available / issues to overcome.
 Advice and information needs to be available at key times – at transition,
leaving school, teenage years, growing older.
 Advocacy support when required.
Build on strengths
Identify strengths of individual and use them to promote the person into
employment and other opportunities.
Accessible, affordable legal advice.
Accessing the right support
Labels can be helpful if they flag up the support a person needs.
Good timescales
 Planned changes communicated within plenty of time to enable individuals
to get used to the changes ahead.
 Times of change create high anxiety for parents. Need to be informed of
plans for the future and what will be involved in actuality.
 Discussions and information needs to be transparent and honest – don’t
fudge the issues.
 Better communication. Information needs to be accessible - in a format that
people understand and it needs to be person-centred.
Confidence and assertiveness training.
A better understanding of systems, funding and information, advice and guidance.
Consistency of respite care.
Trying things for size
 The flexibility to try different avenues and types of employment and
accommodation. Individuals need the experience on which to base decisions.
 Parents need to learn to take risks with their special needs children as they
would with other family members.
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It’s important to marry up transitions with short breaks respite care.
Planning – which includes support (repeated).
Question 3
In those situations, how are you supported or held back by other people?
Funding holds back progress
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Held back by obstacles of finance which have a huge impact on what an
individual can or cannot do especially when in residential care.
 Cuts in services affecting wide range of disability groups and elderly people.
“I feel that choices are taken away from my son because of the attitude of
Lincolnshire County Council regarding funding people to join Linkage. He has friends
at college he may be able to live with when he leaves, but this will be hindered by the
funding situation at present. Lincolnshire County Council will not fund people who
live outside of Lincolnshire.”
Obstacles of finance in work – how much can you earn for what hours and what is
the impact on my benefits?
“It is difficult during transition as my son doesn’t like change. It needs to be a gradual
process or be done over a period of time in order to get to the end result.
Sometimes parents have no control over what is happening. When my son leaves
college, he needs people around him and staff to support him to make friends and
build relationships and responsibilities.”
Held back by attitudes of ‘normal’ people.
Supported by being given opportunities to make own decisions.
“It’s about encouragement, not doing things for disabled people but supporting
people to do things themselves. It is about giving people a choice themselves rather
than others making decisions for them.”
Held back by people thinking we can cope with the current system which mitigates
against disabled people accessing the type and amount of work they want to pursue.
Disabled people are often encouraged to be volunteers because that avoids difficult
issues around pay and benefits.
For example, one service user wanted two paid jobs and had this opportunity but had
to volunteer at the second rather than get paid because of pay / benefits issues.
Held back by people applying for jobs who are over-qualified cuts other people off
the short-listing. There is a need for very sympathetic employers. Apprenticeships
being offered cost organisations money.
Held back by cuts in supported employment services e.g. Remploy – results in huge
negative impact on access to employment.
May be useful to suggest supported employment for an individual if suggested as
therapeutic, rather than unrealistic paid employment.
Can be held back by lack of employment opportunities.
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Held back by people who are overprotective in residential care due to fear of
individual’s behavioural issues.
Can be held back by employers if they cannot accept failure / difficulties and work to
resolve with support organisations. Employers need to be informed on individual
support needs / behaviours to have the information to be able to support the
employee appropriately.
Held back by being trapped in basic wage conditions.
Supported by knowledgeable employers.
Supported by professional and dedicated staff used to dealing with disabled people.
General organisations not used to working with disabled people put barriers in the
way and don’t want to know. They need education and training.
Regular reports and reviews
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Supported by regular reviews and ongoing support and assessments.
Held back by social workers not attending reviews or being out of contact
with young people and their families.
Held back if action plans from reviews are not acted upon.
Held back if choices made from a limited selection of activities and services
offered.
Held back if day care and care services do not seem joined up.
Held back by Lincolnshire’s medical services. They have been terrible with my
daughter’s health issues – pushed from pillar to post.
Held back by lack of information
“The Government should provide better information about where to go for help.
I have had two nervous breakdowns due to fighting for my daughter to live the life
she wants. The lack of information is the disgraceful part. It makes you ill. You have
to fight to find anything out. Is it deliberate?”
Held back by lack of appropriate support
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“When my two severely learning disabled sons were younger, there was
nothing. I ended up contacting the social worker and saying that I would have
to put them up for adoption. I was that low. Then I got help. Why should I
have had to get to that state?”
Held back when staffing is low.
Other people’s attitudes
We were vilified by an aunt for sending our daughter to Linkage. She didn’t
understand why we wanted our daughter to go to Linkage. We didn’t want her to sit
in a chair rocking all day.
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Held back by lack of consistency and continuity in social work staffing.
They are not with my daughter long enough to get to know her and her needs.
Consistency matters to my daughter. It is so important she should not be messed
about.
Some social workers set unrealistic targets – they do not know my daughter.
Supported by
Good social work support – but she left her job because of the restrictions placed
upon her – she couldn’t do her job any more.
Held back by issues around type of disability
It can be easier to get into employment if you have a physical impairment rather than
LD.
Held back if service provided is setting unrealistic targets and goals for themselves.
Held back is service being purchased through personal budgets are not fit for
purpose.
Held back if cannot find the right professional for referrals or when cannot get
answers to questions because no one returns phone calls straightaway.
Held back if having to chase up professionals.
Held back by turmoil around moving accommodation and finding transition difficult.
Mental health can be an added issue if not recognised by decision makers and
funding always an issue.
Held back by box ticking and systems that don’t work.
Money wasted on bureaucracy.
Held back when having to continually justify individual condition or disability.
Held back by conflicts of interest amongst personnel in local authorities.
Held back by local authorities jumping on potential changes to justify actions e.g. no
more education statements. Children left in limbo because council is refusing to
statement.
Theme two
Question 4
Individual control
What helps you to have choice and control over your day-to-day life and the
support you get?
Personal budgets. But personal care often takes up so much of personal budget, it
leaves little to do anything else. It all comes down to budgets every time. Budgets
depend on assessments. Questions in assessments are not put across well enough, so
enough information is not gained and funding is not given. Appeal is difficult.
Support given in the right way.
“The level of choice and control a person can exert depends on the ability to reason
and be literate and numerate. If these are not available, making choices and
individual decisions is difficult. It needs trained and enterprising staff to help suggest
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suitable choices and routes to get to these choices and goals and to correct any
mistakes that occur on the way to these goals.”
Being at Linkage.
Person centred planning
This is an ideal way of finding out what a person’s individual needs, concerns and
likes are and helps them think about the future.
Care packages being flexible. One size does not fit all.
Being able to talk and express opinions.
Individuals can feel pushed and pulled by Social Services. They need to feel they have
the right to complain.
Future planning
There is a need to acknowledge and plan for the future – for ageing service users and
parents deceased.
Encouraging independence
The culture of well-meaning organisations and staff who want to stay with the status
quo and current service can prevent people from having choice and control.
Being person-centred
Workers need to be careful about putting their own subjective view of ‘what is right’
for the person – this can restrict choice.
Too much support can be overkill.
Technology can work for and against choice and control
i.e. computers can help people but bring their own problems e.g. contact by e-mail
by individuals requesting money.
Social media can also help or hinder because of potential exposure and vulnerability
online.
Individual labels (e.g. Downs syndrome) can limit opportunities by others directing
them to people with the same label.
Individual budgets – other people as well as parents need to be involved in decisions
on how to use individual budgets. Some parents can make decisions that are not in
the best interest of the individual.
Individual budgets – to be an employer of staff is a large responsibility. Is this choice
and control?
Person-centred accessible communication
“My son has only just started to fulfil his potential since he started at Linkage. He is
now able to communicate his needs, thus cutting down his challenging behaviour.”
Independent support
Support needs to be available from someone outside the ‘home’ (such as
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independent advocacy) and not a continuation of this.
Training
Becoming more ‘in control’ by attending a course e.g. with County Carers, attending
talks by different organisations so that an individual becomes more knowledgeable
about issues they may face on the way ahead.
“It’s not about their choice – it’s about funding. Since at Linkage, my eldest son voices
his opinion. This is so good. He has found his voice.”
Question 5
What else would help you to have more choice and control over your day-to-day
life and the support you get?
Adequate funding to access various options. There are more opportunities to choose
from if funding is available and this has to include facilities and transport.
Having a social worker who listens and by making care centred around an individual’s
needs.
Getting information in an accessible format and being involved in decision-making.
Having services and places available to access – and these facilities not being cut and
cut!
A fair Resource Support Allocation.
The rate was dropped without any consultation – this affects how much support a
person can get.
Individuals do not always know what choices may be available – and some people
have very limited experience on which to base choice.
Flexible support - to have the necessary support at the right times – perhaps short
periods several times a day.
Support for individuals to establish routine and to understand responsibilities
alongside rights.
 Not all individuals make choices that are good ones. Other people being
involved in the young person’s life can contribute to good decision-making.
 Need to have mechanisms in place to help if an individual makes the wrong
choice.
Staff training - must ensure individuals are supported to be as independent as
possible.
More opportunities for individuals to be given a voice.
Knowing that all relevant professionals didn’t constantly need to be reminded of the
changes in a disabled person’s life and having the help available to support them
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through the changes by bringing in the relevant people rather than having to be
chased up.
Question 6
What would help you to access services and activities which suit your needs? For
example education, transport, health, social care, sport, social and recreational
activities.
Personal budgets are crucial here.
A better system of assessment for funding. A more detailed assessment procedure
rather than YES/No boxes to tick.
More accessible public transport. More creative solutions e.g. vehicle pools. We need
to come up with solutions as well as problems. Example of good practice to build on
in Call Connect community minibuses in Lincolnshire, which provides transport for
people living in rural areas.
Support services that raise aspiration - there is a worry that people are set up to fail –
but need to overcome this. Support services / staff should be willing to allow
individuals to take risks and make mistakes and learn. Services need to educate
individuals better on the possible risks and how to deal with them – gives more
freedom, choice and control.
Forums need to be more effective in cascading information up.
Services that are properly staffed.
“At my daughter’s previous day centre – there were 115 service users and 8 staff.
I complained at the ratio of service users to staff, fearing that my daughter would not
get stimulation and her life would be ruined. This was neglect of care and the reason
we moved.”
Personal support to access local community clubs, transport (taxi) for college,
wheelchair access, health service professionals trained in PMLD, patience and
understanding.
More support with administering direct payments. People having a choice over direct
payments.
Question 7
How can you be involved in decisions that affect your local area?
The first thing is to be informed of what is out there and the choices that are
available. Then understanding whether it would be ‘right for me.’
The parent voice needs to be louder and stronger.
Specialist colleges / Linkage / parents need to work in partnership.
Through Learning Disability Partnership Board.
Give Linkage a higher profile to demonstrate evidence of good practice.
For Linkage to be at local authority / Government departments to advise. Linkage has
the experience – tried and tested – to advise well.
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Community Hubs / Disability forums / Developing Communities / Youth Councils
Louth Community centre mentioned as example of leisure centre benefiting local
community.
Feeling comfortable to complain if services are cut.
To be listened to and consulted in all planning decisions in a proactive way, so that
our opinions are considered.
Family to family support.
Hospitals tend to provide information that is useful.
Voluntary groups are exploited. Proper funding would make these specialist groups
viable and lead to a win-win situation.
“If my GP surgery had better access, I would be able to go for things like a flu jab or
diabetic clinic. I am a wheelchair user and it’s too hairy to access the surgery. They
phoned me up to offer me a flu jab and I explained how difficult it was to get in. The
response was ‘I’ll put that down as a refusal then.”
“I would go on a bus in my wheelchair if I knew I could get back, but I don’t. The bus
driver told me that he didn’t have to take my wheelchair if the bus was full.”
Parent forums.
Theme three
Question 8
Changing attitudes and behaviour
What works well in changing the way other people treat disabled people?
Visibility.
Mablethorpe is a good example of this. Once a community gets to know a learning
disabled person, they see the abilities not the disabilities.
Education, challenge, positive images and awareness – the community needs to be
educated that disabled people are the same as non-disabled people and this needs to
be done from an early age (repeated).
Empowerment of disabled people. Sharing success.
Challenge legal aspects using DDA, challenge accessibility.
Blow the whistle on inadequate carers.
Need properly trained staff, who understand disabilities and how to work with
residents. Need the right environments.
Educate in sector schools from a young age. People with disabilities could go in to
speak to school pupils to explain what they have done with their lives, the difficulties
they face and how they feel.
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Educate the wider community, including employers. Help them to overcome possible
fears and obstacles.
Include Equality and Diversity in the school curriculum.
TV sitcoms, films etc. showing people with a range of disabilities.
It is actual contact with disabled people which increases awareness and hopefully a
change in attitude. It is necessary to be out there and get noticed.
For people with LD to have a greater community presence and to develop
relationships.
To ensure workers are consistent in educating people with LD in appropriate
behaviour in the community and in different relationships with others.
Mediation.
Seeing is believing for learning disabled people in jobs.
Encourage non-disabled people to walk a mile in their shoes.
Tackle hate crime towards disabled people.
Positive images.
Government emphasising that disabled people are not scroungers.
People understand and accept physical disability but do not understand LD and
associated behaviours and can be frightened by them.
It is easier to change the attitudes of very young people – need to ensure this
happens at an early age (repeated).
Talking to people – “A few years ago, I had someone knocking on my door and
running away. I went to the phone box and bumped into this person. We got talking
and she saw me differently. The banging on my door stopped.”
Question 9
What else is important in changing the way other people treat disabled people?
Promoting good role models in everyday life.
Stopping segregation – integration with the community.
Openness, sharing.
TV programmes / events such as the Paralympics.
Compassion.
Awareness-raising reaching a mass audience.
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Information.
Parents and professionals getting involved in promoting positive actions.
There needs to be an awareness of other cultural perceptions of disability because
disabled people come into contact with different cultures and ethnicities in
community life and the workplace.
Develop work placements.
Ensure teachers practise equality and diversity.
Question 10
What can we do to make sure that everyone recognises the contribution that
disabled people can make?
Working, living, integrating with them.
Campaigns – using famous people who may have family members with a disability or
connections with disabled people to front campaigns to raise awareness.
Self-advocacy.
More awareness – national awards / publicity / open days /presence at large events /
shows / forums / seminars and conferences.
Informing Government / lobbying / petitions / campaigns.
Publicity. Shout the positives. TV and radio slots regularly.
Disseminate copies of Linkage News more widely.
Get involved in other events and campaigns e.g. Sports Relief, Comic Relief, Children
in Need – to reach mass audience and highlight beneficiaries.
Accessing public areas for demonstrating success stories and achievements.
Partnership working with employers.
Question 11
Do you have any suggestions for how we should implement and monitor the
strategy once it is developed?
Implementation
 We will be able to tell you when we know what the strategy is.
 Keep involving disabled people and carers.
 If the new plans are co-produced with disabled people and their families and
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supporters, they also need to be involved in implementation and monitoring.
We will know the plan is working when there is more understanding, better
harmony between people / more job availability for disabled people.
Implement something that doesn’t get rubbed out with the next change of
Government.
Implement in a way that holds the Government accountable for delivering
on what disabled people have asked for.
Have an independent group to implement the strategy. Make sure strategy
is nationwide and not to be interpreted differently in different localities.
Make sure the independent group is not funded by the local authority and
that they are answerable to disabled people, parents and carers as well as
local and national government.
Have a voluntary group e.g. Carers group or parent carer forum to monitor
all the good practice and the bad practice and feedback not only to the
independent group that implements but also local and national Government.
Implement in a standard way across the country so everyone knows what
their options and opportunities are
Recognise geographical differences but don’t have a postcode lottery
Communicate the implementation of the new plans in a way that is clear,
transparent and accessible.
Use organisations such as Linkage and Mencap to implement new plans.
This should be the responsibility of a single Government department with a
dedicated team, replicated at local level.
Postcode lottery has to be avoided. Funds made available for specific
purposes should be ring-fenced, so that funds cannot be diverted. Funding
must be adequate.
Consumer law has concept of ‘super complaints’ to the Office for Fair
Trading. Could there be a similar process in place if a local authority is failing
in its obligations?
Local authorities are not the only route for implementing strategy. The third
sector can do it.
Regular reviews with stakeholders.
Ministers to have focus group meetings with service users.
Key performance indicators that are balanced with information and scores
from service users and professionals.
Monitoring
 Let’s have some case studies monitoring people who are moving onto
personal budgets.
 Monitor how Social Services assessments of disabled individuals are working.
 Keep asking disabled people for feedback on how they are finding the new
plans working.
 Monitor how services are being developed and funded.
 Monitor how the Government are personalising services which meet
individual needs.
 Monitor how disabled people feel about the services and funding they are
receiving.
 Monitor the impact of the new plans on a disabled person’s ability to realise
their own aspirations and breathe life into the rhetoric of this Fulfilling
Potential strategy.
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A dedicated team of people, especially those who have direct knowledge or
understanding of special needs – disabled people themselves, parents and
families need to be involved in monitoring activity.
Monitoring of the plans needs to involve disabled people.
We will know the new plans are working when:
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Question 12
Disabled voices are stronger.
Learning disabled people are really visible in our society and taking a full part
in the community.
We are working in partnership towards commonly-agreed goals.
Parents feel supported in supporting their disabled children.
Disabled people are not discriminated against.
Disabled people can access the services they need to live a full life.
People do no longer have to fight for what they are entitled to.
When people are no longer using Courts, MPs and local councillors to get
their needs recognised and the services and support are put in place.
Is there anything else you would like to tell us?
“Disabled people are part of society and should be included. We are either a society
who will take care of the needy or not. Are Lincolnshire County Council and the
Government prepared to stand up and say they are not? This is how they are coming
across.”
“Having read the questions, we feel they are too general. There is no differentiation
between physically and mentally disabled people whose needs can be totally
different.”
Is this a way of finding out where the Government can place the cuts?
Linkage is an exemplary organisation. The Government should fund Linkage to be an
information and guidance service.
Bureaucracy discourages volunteering
“There is a reluctance for people to volunteer because of all the checks and
assessments. CRB checks can put people off. There are fears too about liability
because if someone takes service users out, there is immediate liability if something
goes wrong. This is tied up with having to do constant risk assessments and it puts
people off.”
In general, there is a need for more information and advocacy.
It is unfair for disabled people to have their benefits cut because they are working.
They don’t earn much money even when working, so it is unfair to cut their benefit.
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Once strategies and ideas are developed, they need to continue. Some really positive
ideas will otherwise get lost in the abyss.
By investing initially in people and their services, this could save money later on.
People with learning difficulties and disabilities can have small worlds. Make them
bigger.
Recruit peer champions for different disabilities, including autism.
Work in partnership – we will never change anything unless we all work together.
Let’s stop playing at it.
Day services – My daughter is on a bus 2 hours every day out of a six-hour day. Day
service provision was meant to be 9.30am to 3.30 pm.
Education to 19 is in general good, but once a young disabled person leaves post-19
Provision, it is a Russian roulette.
A certain amount of money should be set aside for places like Linkage to form a
group to travel round the country to show how good care should be delivered.
Disabled people, young and old, have been around for a long time and will always be
around. Getting it right now will not only reduce the monetary cost, but also improve
the health, emotional and mental wellbeing of the disabled person and their carers
and their families.
We would like more opportunities to engage with both local and national
government. We need to create an ongoing dialogue. Disabled people should be
engaged to deliver training to MPs and councillors and it should be mandatory before
people take office.
Proposals need to be tied in with SEN Green Paper.
Hope this consultation takes what is being said and builds it into the strategy and that
the Government listen and really try to get this to work. If you get it right, it could
save huge amounts of money.
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Extended individual comments, stories and ideas for good practice / building on what works
Specialist provision at the appropriate time
I made a big mistake. I should have sent my disabled son to a sector primary, not a special needs one
as he left without friends nearby. When it came to college, I looked at sector colleges but there
wasn’t the support he needed, so he went to Linkage. He loves the college. He lives away from
home, he has friends, he has his independence and lives his life – all with support from staff.
Personal hygiene, laundry, finances, looking after his home – he is learning about all this at Linkage
but he wouldn’t in a sector college.
Developing a stronger voice through advocacy
We are very happy with the level of care at Linkage where we consider you have excellent staff. In
the last year, our son and ourselves received some pressure to encourage our son to independent
living. Certainly our son does not wish at present to go down this route. To counteract Local
Authority pressure, Linkage arranged for our son to state his preferences in front of an advocate
which was filmed and made in to a DVD. We had written a letter to the Local Authority following last
year’s review concerning our son’s wishes which were then reinforced by the DVD. We felt that
Linkage’s actions was extremely professional and welcomed by ourselves.
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Is the Government serious about fulfilling potential?
My feeling is that the higher the profile of people with disabilities, the more naturally they will
become part of every community. People who are unfamiliar with disabled people may feel
awkward and unsure how to act toward them. This is not deliberate and only through lots of contact
and awareness-raising (starting at an early age) will the general public realise that disabled people
aren’t another species (!) but are just ordinary humans who face huge challenges in their daily lives.
James is met with great kindness on the whole but sometimes there are unthinking remarks which
hurt him deeply – and hurt me too on his behalf.
I wish that the Government could be called to account, put on the spot if you like. Either they agree
to care for those less able members of the community or they speak up and say aloud that they will
not support them and enable them to have meaningful and happy lives.
James is very fortunate to belong to the Linkage community – and it happened by chance…I know
that he is one of an elite minority who is cared for by a fabulous team. It gives me great peace of
mind and I wish that all parents and carers could have the same confidence in the care providers
who have such a huge influence on the quality of life for so many people.
Our son’s story
Our son is 8 years old, deaf, with other disabilities. He is on School Action+. He attended Doncaster
School for the Deaf for trial days. He enjoyed Doncaster and they could see he did well on these days
and offered him a place. Due to problems we had encountered in mainstream schools, we had had
to home tutor him for 3 months.
Because he was on School Action+, our local authority refused to pay for him to attend Doncaster.
The SEN department say that they don’t issue statements anymore and don’t know how else to
award him hours. Before all the changes in SEN, he used to be on 10 medical hours a week.
He is disabled, but not given the same service or choice.
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Good practice at Boots
Boots have organised prescriptions for my husband and I and they make it easy for us. They do all
the work and we are really pleased with their service. They are a real example of good practice.
They deliver the prescription. They let me fill in the form and they bring it to us. They do the whole
thing.
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