Planning for Mena
Mena is 28 and has lived in her own place now for
nine years. A home of Mena's own was part of the
family's plan for her from a very young age.
Mena's mother Margaret places great emphasis on
formulating a vision for a person's life, planning as
early as possible and taking control of how this will
happen: "Don't make the assumption that
government or services will 'lead the way'. They
won't. Families need to lead. You need to place
yourself in control. I call it 'family business'. Once
you've handed responsibility over, you spend the rest
of your life trying to get it back. You work just as
hard, but in a negative kind of way, against the
constraints placed on you, instead of taking and
keeping positive control. There are dozens of
opportunities, all the time. Not being ready to take
them up can be the result of waiting for others to
take the lead."
"There are dozens of opportunities, all the
time.
Not being ready to take them up can be the result
of waiting
for others to take the lead.
A planning group, a 'circle of support', was
created for Mena when she was as young as about 10
years old. This group of family and friends has been
critical over the years in "the process of developing
the vision" for Mena's life and planning the practical
steps to achieve this vision. Way before Mena left
school, the circle had thought about preparations for
life beyond.
Knowing Mena would eventually want her own home,
her family started looking around near them for an
accessible house. When she was about 13, they bought a
small 2 bedroom house nearby. Margaret laughs that one
of her main conditions for the house was that she
wanted "to be able to run to the house in the middle
of the night in my nightie" if necessary. This house
was let on open rental market until it might be needed
as part of the plan for Mena's life. Margaret notes
that even though this initially put the family into
some financial stress it meant that Mena had some
options for later. Likewise, as soon as Mena turned
18, even though there were no immediate plans for her
to move out (the original idea was that she might not
do that until around 25), her name was put on the
public housing list. The waiting lists are long and
these actions were like "taking out an insurance
policy" for Mena.
Families should try to "be ahead of the
game".
About three years prior to Mena leaving school the
circle started to think about planning for work.
Margaret knew there were no available post-school
services that would meet the vision of Mena's life:
"One idea was to find Mena employment by making it
ourselves; to start her in her own business." About 18
months prior to Mena leaving school, Margaret left
work to research what this business might be. "I had
to make the space to think this through". The decision
was made to set up work for Mena by creating a family
enterprise in card-making.
A paper press and materials were bought and the
family became stallholders at the weekly Brisbane
Markets. This involved morning work during the week
creating and packaging the cards and all day Saturday
and Sunday at the markets selling them. This family
enterprise represented about ten hours' work per week
for Mena. She was, in fact, as Margaret notes, "the
first one to leave school with a job", because the
planning for this had gone on well beforehand.
Mena did not leave school with funding adequate
to meet her support needs. There was an allocation
of $18,000 'Moving Ahead' money. This was paid to a
service and Margaret notes one of the things Mena's
circle had done earlier was to look around and find a
small service that would be "supportive of the
family's vision". Establishing a partnership with a
supportive service was an important step.
At around this point, Mena showed clearly that she
was driving this vision of where her life was heading
by deciding, after a conversation with someone at her
church, that she wanted to move into her own place by
her 19th birthday. Margaret notes, "sometimes the
people you're planning for will run with the vision
ahead of you".
So suddenly this modest amount of "Moving Ahead"
money was nicknamed by the circle "Moving Out" money
and the priority became Mena's own home. Because of
the early planning for an eventual home this new
priority was a possibility. When Mena first moved out
it was into the house bought long ago for that
purpose. Her rent was subsidised by the family.
Margaret describes a kind of "patchwork quilt" of
little bits and pieces of funding and support built up
over time around Mena. Initially the family covered
the gaps in Mena's support. Other little "bits and
pieces" of money were sought out, "an hour and a half
a week from community options, some HACC money and so
on" Margaret recalls. The card-making job saw Mena
working from the family home in the mornings, and
initially Margaret would extend her stay and provide
support until about 4pm.
"A patchwork quilt": little "bits and pieces" of
money and support.
One creative strategy that both added to Mena's
support and brought people into her life was a "dinner
roster". 28 different people gave a commitment to
spend two hours, once a month, having dinner at
Mena's. This had the effect of gradually building a
network of people in Mena's life. The dinner roster
has operated now for nine years. People have come and
gone from it. Mena no longer needs the roster to make
up gaps in support, but she enjoys the varied group of
people she sees on a regular basis. Margaret observes,
"It's a safe way to invite people into Mena's
life."
One person even anonymously donated money to the
service to fund a sleepover a week for Mena.
By the time Mena finally did get a public housing
unit, her original house had served its purpose, and
was eventually sold. The funds will contribute to a
trust fund for Mena’s future.". Some people
respond to Mena's situation, saying to Margaret,
"You're so lucky Mena has her house" or "You're lucky
you could take time off to plan this", but Margaret's
response is that "The lucky don't sleep in. What
appears 'lucky' to others is the result of very
intentional steps, thinking through what will be
needed and planning thoroughly." She continues,
"We see our other kids lope along through life and
opportunities come along, they fall into a degree or
fall into a relationship, but for people with a
disability there's a much greater cost in failure,
fewer opportunities and the safeguards are not always
there. Nothing good happens without
planning."
"The lucky don't sleep in."
Margaret also notes that "lives are journeys".
We can't just focus on an outcome, like 'getting a
job' and that's that. People's needs, desires and
priorities change all the time.
One circle of "bright young women Mena's age" was
specially formed to address three issues Mena had
raised herself: a holiday, a job in the public service
and a flatmate; all were dealt with in three months.
From the card-making business Mena moved on to other
work, to small jobs in the public service, and at a
community art gallery; all paid work, on productivity
based wages, with Mena working at her full capacity.
Lately, as her health has deteriorated, she has moved
onto a full funding package. The circle once planned
for school, a job, a home. People have come and gone
but the circle has remained. Now it thinks about the
long term, about support for Mena without her parents,
and also about adapting for the new circumstances of
her health and safeguarding her lifestyle as much as
possible.
Margaret sees in Mena's situation a lesson about
the power of a vision. She believes without the
family taking matters into their control, guided by a
vision, Mena would never have got funding and would
never be in her own home. What acting on this vision
had meant for Mena is that she has been able to fulfil
her dreams, build her own life, to have a job, to have
her own home, her own social life.
She has never had any intention of ever coming back
home!
Margaret encourages families to plan as early as
possible, but also notes, "It's never too early;
it's never too late."
