Profound intellectual and multiple disabilities
mean that a person has a complex range 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 disabled 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 things that you do as a mum.
The other overwhelming feeling is loss.
You have lost the much-wished-for child 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,
for somebody who was given a week to live,
and here she is, 40, and celebrating.
Person-centred planning around the individual
and personal budgets is making a difference.
Families may, for example,
benefit from all the developments in new technology,
assistive technology, communication aids.
Having the right wheelchair, the right hoist,
the right adaptation to your housing, if necessary, makes a huge difference.
Quite early on both my husband and I decided
we wanted to give our daughter the gift of independence.
Tremendously difficult when they have disabilities.
She'd lived in local authority provision for a while and it wasn't working,
so we wanted to give her true independence.
Somebody said to us, "Why don't you 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 people who support her 24 hours.
Everybody can express choice,
they can express happiness, they can express unhappiness.
Many people with profound and multiple 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 needs 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 smile, 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 out 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.
Respect, dignity, 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 there other than disability
and I highly recommend yoga, Argentine tango and fun.
You do need a lot of fun.
We're positive and when we can we really enjoy life.
That's how you cope.