and multiple disabilities
mean that a person has a complex
of difficulties and disabilities.
They will include
a significant learning disability,
they may include
a range of physical impairments,
they may very well include epilepsy,
some sensory disturbance,
and that person has major challenges
in getting a good quality of life.
She has to cling to life
because the complexity
of the medical conditions,
two life-threatening conditions,
the epilepsy and the kidneys...
..affects her totally.
Of course the biggest effect,
apart from those two medical things,
is that she has
profound learning disabilities.
She can only communicate
with her eyes and eyebrows.
Because she has difficulty in
communicating what she needs and wishes
she often gets very angry.
If somebody has very complex needs
there are big issues for the family
about how they can continue to cope,
about who will care for and support
their child if they are no longer around
and also whether they themselves will be
fit and well
and able to carry on caring,
assuming hopefully that their son or
daughter lives into middle or old age.
When she was diagnosed
as having this very rare condition
and that she would be seriously
for the rest of her life,
I couldn't believe it.
I couldn't understand it,
I didn't want it
and I went through all the normal
that you do as a mum.
The other overwhelming feeling is loss.
You have lost the much-wished-for
that you thought you were going to have
and your expectations are smashed.
So you're in bereavement and loss
and you're in that for life.
It does get better, you work through it,
but the milestones are pretty hard.
My friends' children growing up
and watching them,
watching them fly the nest,
go to university, get married.
We'll never be grandparents.
That's another bereavement.
We've just had the birthday, 40,
who was given a week to live,
and here she is, 40, and celebrating.
around the individual
and personal budgets
is making a difference.
Families may, for example,
benefit from all the developments
in new technology,
Having the right wheelchair,
the right hoist,
the right adaptation to your
necessary, makes a huge difference.
Quite early on
both my husband and I decided
we wanted to give our daughter
the gift of independence.
when they have disabilities.
She'd lived in local authority
for a while and it wasn't working,
so we wanted to give her
Somebody said to us, "Why don't
set her up in a home of her own?"
And we thought, "Why not? Why not?"
Victoria became the first tenant,
along with her flatmate,
the first perhaps in the country
to have a tenancy in her own name.
She owns everything in this house
and she is the employer of the
who support her 24 hours.
Everybody can express choice,
they can express happiness,
they can express unhappiness.
Many people with profound and
learning disabilities have good lives.
They have positive relationships,
they enjoy going out,
they have activities
that give them pleasure,
and a package of care and support
ought to reinforce the abilities
as well as the care needs
of the person concerned.
Very often I think we under-expect
what people with the most complex
can actually enjoy
and from what they can benefit
in their everyday life.
Sometimes she can be extremely happy
and give you the most wonderful
which brightens up a room,
and other times she can be quite sad
and I think it's because of all
the things that are going on in her body
and she feels quite low.
But by and large
she is a very positive person
and I think a lot of the time
she is happy
and she likes her own home,
she likes being here.
We don't find our children a burden,
but the lack of appropriate support
can be burdensome.
The staff here are very skilled
in picking up her mood
and her health, really, of the day.
If she's up for it, then she'll be
and about doing her shopping at Tesco
or she might go out for lunch
to the pub,
which is very good.
She might go swimming in the afternoon
or she might go for a walk
down the canal.
It depends very much on how she is.
So every day is different.
The difference is
they'll go at Victoria's pace
and they'll interpret
what they think she wants and needs.
What families value most of all
are positive attitudes.
choice, maximum control.
You realise that you are in it for life,
so you need to be good to yourself
and your family
to carry on being a lifelong carer.
There isn't a job description,
there isn't a pension at the end of it,
you can't opt out,
but it does go on for their life.
So you do need another life out
other than disability
and I highly recommend yoga,
Argentine tango and fun.
You do need a lot of fun.
and when we can we really enjoy life.
That's how you cope.