This talk was part of a day long seminar with the people of Christchurch who are starting the Enabling Good Lives programme. The talk explores how full citizenship for disabled people demands a very different social system. The final slide sets out the thoughts of the group on the kind of system of Self-Directed Support that people would like to see emerge in Christchurch.
5. What is wrong with institutions?
1.Devalued lives - the institution defines your place, your role,
your purpose.
2.No freedom or control - the institution strips you of freedom
and personal authority
3.Impoverishment - economic power is nullified
4.Sheltered, but homeless - a home is more than a roof - it’s vital
to control privacy and security
5.‘Care’ not help - ‘care’ already assumes the passivity and lower
value of the person ‘in care’.
6.Disconnected - the institution cuts you off and leaves you
within a hierarchical system where abuse can become natural
7.Loveless - relationships have no place in the institution
6. 1. Direction - It’s risky if my life lacks meaning and value
2. Freedom - It’s risky if I cannot direct my life, communicate or
be listened to.
3. Money - It’s risky if I lack money or if I cannot control my own
money.
4. Home - It’s risky if I cannot control who I live with, my home
and my privacy.
5. Help - It’s risky if I’ve no one to help me and if I cannot control
who helps me.
6. Life - It’s risky if I am not a valued member of my community.
7. Love - It’s risky to have no friends or family.
Why citizenship is safer
13. Demanding of man that he assumes his condition and
not till his neighbour's field, he [Rebbe Yaakov-Yitzhak,
The Seer of Lublin] said: "There are many paths leading
to perfection; it is given to each of us to choose our own,
and by following it with great dedication, we can make it
become our truth, our only truth."
Elie Wiesel
19. I used to think that freedom was freedom of speech,
freedom of the press, freedom of conscience. But
freedom needs to include all of the lives of all of the
people. Freedom is the right to sow what you want. It's
the right to make boots of shoes, it's the right to bake
bread from the grain you've sown and to sell it or not to
sell it as you choose. The same goes for a locksmith or
steelworker or an artist - freedom is the right to live and
work as you wish and not as you're ordered to. But these
days there's no freedom for anyone - whether you write
books, whether you sow grain or whether you make
boots.
Vassily Grossman
24. You could no more make a city out of paupers than out
of slaves.
Aristotle
Self-interest is the most powerful engine for individual
and social development, in other words, social progress,
in other words social justice. It is when the most
disadvantaged in society have the opportunity to
improve their lives in their own self-interest that change
will take place.
Noel Pearson
29. Then the old Vainamoinen put this into words:'Strange
food goes down the wrong wayeven in good lodging;in
his land a man's better at home loftier.If only sweet God
would grantthe kind creator allowme to come to my
own landsthe lands where I used to live!Better in your
own countryeven water off your solethan in a foreign
countryhoney from a golden bowl.'
The Kalevala
34. There are eight degrees of charity, one higher than the
other. The highest degree, exceeded by none, is that of
the person who assists a poor Jew by providing him with
a gift or loan or by accepting him into a business
partnership or by helping him find employment - in a
word, by putting him where he can dispense with other
people's aid. With reference to such aid, it is said, “You
shall strengthen him, be he a stranger or a settler, he
shall live with you” (Lev. 25:35), which means strengthen
him in such manner that his falling into want is
prevented.
Maimonides
39. True love leads a man to fulfilment, not by drawing
things to himself but by forcing him to transcend himself
and to be something greater than himself. True spiritual
love takes the isolated individual, exacts from him
labour, sacrifice, and the gift of himself.
Thomas Merton
45. Resources multiply in networks created by intentionally
building relationships that cross boundaries & serve
people's deepest purposes.
Seymour Sarason
50. 40 plus years of self-directed support
• always improves outcomes
• always increases demand
• sometimes reduces costs
• system design is critical
51.
52.
53. 1 Rights - robust rights that give people effective entitlements
2 Control - person, or someone close to them, controls budget
3 Clarity - systems, rules and budgets are clear
4 Flexibility - budgets can be used in many different ways
5 Ease of Use - it is easy to plan, manage and control assistance
6 Community - person’s contribution to society grows
7 Sustainable - system is affordable, innovative and supported
These would seem to be some of the qualities of
an effective system of self-directed support.
90. 1. Whose money do you think it is? If it is the person’s entitlement what rules might still
apply? - People need to understand their right to funding and some will need education.
2. Who should be able to manage the budget? What new systems might be useful to make
control easier? - Assistance available to those who need it, ensuring budgets can be managed
by people they can trust. Checks and balances need to be in place. System infrastructures that
are in place ie providers use these where possible
3. Do you want to have some idea of your budget before you plan or only after you’ve
planned? How would you decide what is a fair budget? - Lots of different ideas, budget first
can avoid disappointment. However can also lead to thinking about money rather than
person.
4. Is there anything you think people should NOT be able to use their budget for? If not, why
not? - Illegal activities. Less restrictions equals more creativity.
5. Do you want one professional group to act as coordinators or not? If you do then who? If
not, why not? - Many variables, dependant on person, their family etc
6. Is the local community an important factor in the new system? If so how might this link be
best created? - Yes, important - Looks different for everyone. In an ideal world would occur
naturally. Linking looks different for everyone. Could vary how people spend their $$.
Brokerage/facilitation/educative role. Infrastructure needed, both facilities and information
systems so people can find the right services for them.
7. What can be done to make the system affordable and to make the available funding go as
far as possible? - Bureaucracy reduced. Collaboration between services and people so they
Questions and Group Responses
91. If you found these slides interesting you might like to read...
92. Lots of free resources on all these topics and more:
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