Down Syndrome Bill The Committee consisted of the following
Members: Chair: Julie Elliott † Cameron, Dr Lisa (East Kilbride,
Strathaven and Lesmahagow) (SNP) † Colburn, Elliot (Carshalton and
Wallington) (Con) † Daly, James (Bury North) (Con) † Davies, Dr
James (Vale of Clwyd) (Con) † Drummond, Mrs Flick (Meon Valley)
(Con) † Fletcher, Nick (Don Valley) (Con) † Fox, Dr Liam (North
Somerset) (Con) † Goodwill, Sir Robert...Request free trial
Down Syndrome
Bill
The Committee consisted of the following Members:
Chair:
† (East Kilbride,
Strathaven and Lesmahagow) (SNP)
† (Carshalton and
Wallington) (Con)
† (Bury North) (Con)
† (Vale of Clwyd) (Con)
† (Meon Valley) (Con)
† (Don Valley) (Con)
† (North Somerset) (Con)
† Goodwill, Sir Robert (Scarborough and Whitby) (Con)
† Hillier, Dame Meg (Hackney South and Shoreditch)
(Lab/Co-op)
† (Bristol North West)
(Lab)
† (Newport West) (Lab)
† (Minister for Care and
Mental Health)
† (Ceredigion) (PC)
† (Totnes) (Con)
† (Oxford West and Abingdon)
(LD)
(North Antrim) (DUP)
† (Bristol South) (Lab)
Adam Mellows-Facer, Committee Clerk
† attended the Committee
Public Bill Committee
Wednesday 26 January 2022
[Julie Elliott in the Chair]
Down Syndrome Bill
9.25am
The Chair
The selection and grouping of amendments for today’s meeting is
available online and in the room. I have selected the three
amendments in the name of the Member in charge of the Bill,
Dr . The amendments will be considered
alongside the existing content of the Bill in a single
debate.
Clause 1
Guidance on meeting the needs of persons with Down Syndrome
Dr (North Somerset) (Con)
I beg to move amendment 1, in clause 1, page 1, line 10, at end
insert—
“(4A) The Secretary of State must lay the guidance before
Parliament once it is published.”.
This amendment requires the Secretary of State to lay guidance
under clause 1 before Parliament.
The Chair
With this it will be convenient to discuss the following:
Amendment 2, in clause 1, page 1, line 12, leave out “(4)” and
insert “(4A)”.
This amendment is consequential on Amendment 1.
Clause stand part.
Clause 2 stand part.
That the schedule be the First schedule to the Bill.
Amendment 3, title, line 1, leave out from “syndrome;” to second
“and” in line 3.
This amendment brings the long title into line with the content
of the Bill.
Those watching our proceedings may be surprised at the brevity of
our discussions today. It is worth explaining to them that that
is not due to any lack of scrutiny in Committee, but to the fact
that the Committee has reached consensus before we have come
here. We have worked together across parties to deal with the
issues that we thought were important. This is a very good
example to those who watch Parliament that when Parliament really
wants to get something done and Members believe that they are
engaged in a worthwhile task, the work can happen in the most
efficient way possible.
I thank colleagues for their work in bringing us to this point. I
thank the Minister for her outstanding work. Having once been the
Friday Whip in charge of private Members’ Bills, I am an example
of gamekeeper turned poacher—although that does bring some
advantages, including how to get the best out of the Minister. We
have very much benefited from having a Minister with personal
experience of a family member with Down syndrome. It is also a
very good example of why our system of constituency MPs, with our
backgrounds and experience, is a very good one when it comes to
appointing people to ministerial office.
I thank officials for their work. They have been tireless in
trying to bring what were initially some relatively large
differences to a position of consensus. I thank colleagues from
across the House who are not on the Committee for their support
on Second Reading and in campaigns across constituencies to gain
support for the Bill.
I thank the public for the widespread support that we have had on
the issue. I thank in particular those Down syndrome groups who
have gone out of their way to provide support to Members, with
anecdotes about personal experience and what they expect from our
legislation. It is a pity that there seems to be a small number
of people out there who were questioning the measures in the Bill
even before they knew what was going to be debated in Committee
today. I hope that they will recognise that the intent of the
Committee is very clear.
On Second Reading, there was a very clear omission in the Bill.
We chose to leave it and deal with it in Committee, rather than
inserting a half-baked measure that we would subsequently have to
change. The omission was that it was not very well set out how
the rights in the Bill could be enforced, for those who wanted to
exercise them, and how that could best be redressed. There were
two things that I really wanted to see and I am very pleased that
the Government have accepted them. I look forward to my hon.
Friend the Minister recommitting to those today.
First, if we have new integrated care pathways and integrated
care boards, should it not be the responsibility of a named
individual to ensure the application of the measures in the Bill,
should it become law? In other words, should there not be someone
to whom those with Down syndrome or their parents can go, to
ensure that the process has been properly applied? Not having
that provision would be a serious omission. I look forward to the
Minister confirming that there will be a named individual on each
board who will be responsible for the application of the measures
in the Bill.
9.30am
The second issue arose from the decision that there should be
ministerial guidance. That was important in itself, but it
created a secondary problem: how does Parliament scrutinise that
guidance? That issue has been raised in the other place about
other legislation. How does Parliament scrutinise the work of
Ministers who are exercising these powers in this particular way?
I have a very strong view that when powers of this nature are
exercised, the actual guidance should be laid before Parliament
so that Parliament can scrutinise it, particularly through our
Committee system. Failing that, the only alternative would have
been to lay a sunset clause in the Bill that would require the
whole legislation to be looked at again at a later point.
I am very pleased that the Government have decided to lay the
guidance before Parliament. That is the correct thing to do,
although I understand that it sets a precedent. It takes this
legislation from being a well meaning, well intentioned Bill into
being a landmark Bill. It changes how things will be looked at in
the future, and that is extremely positive.
I set out the rest of the arguments on Second Reading and I do
not intend to repeat them today, but those are the main points
that take the Bill into a slightly different and more important
realm. The Committee has worked together and there has been
Government and cross-party support, and that has enabled us to
bring these changes forward in a meaningful way. Getting the
support almost certainly means that the Bill will progress to its
remaining stages, potentially on 4 February, and get out of the
House of Commons quickly. That is a good example—I can think of
no better time than this to say it—of our ability to manage our
affairs in Parliament without daily psychodrama and of the fact
that when we want things to be done in a reasonable way, it is
entirely possible for us to do that. That is what our
constituents and those who will benefit from the Bill expect.
Sir (Scarborough and Whitby)
(Con)
Does my right hon. Friend believe that the Bill creates a
precedent for other conditions such as 22q11.2 deletion syndrome,
which affects a smaller number of people but manifests in a
similar way?
The Minister may say something about that when she makes her
remarks, but it is entirely possible that, when guidance is given
and there is a named person on the integrated care board, the
Bill’s provisions and the measures required to apply it would
reasonably be applied to other conditions of that nature.
Again, the fact that the guidance will be laid before Parliament
gives us an opportunity in Parliament to deal with the very
issues that many Members have reasonably raised. As all
colleagues will know, we put Down syndrome as the only condition
because of the difficulty of getting a private Member’s Bill
through. Getting support requires it to be simple and concise.
The fact that the guidance is laid before Parliament enables us
to take the legislation forward in a proactive way without too
much actually being said in the Bill. That is a good model for
how we can take legislation of this nature through in future. I
am grateful to my right hon. Friend the Member for Scarborough
and Whitby and congratulate him in Committee for the first time
on the honour recently—belatedly but very justifiably—bestowed on
him.
I go back to the point: the fact that the guidance is laid before
Parliament gives us all the chance, on behalf of our
constituents, to look at some of these other conditions. If it
applies for Down syndrome, why should it not apply in the same
way and through the same mechanisms for other conditions? That is
an important issue for the Committee to have addressed. With
that, I conclude my remarks.
Dr (East Kilbride, Strathaven
and Lesmahagow) (SNP)
I only want to thank everybody across the parties who worked so
hard on the Bill; it has been so heartening to see Parliament
come together on something so important. As chair of the
all-party parliamentary group on Down syndrome, I have had so
many emails from people who are right behind the Bill and think
that it will be ground breaking in giving them the recognition
that they feel is so important in their lives and for their
families.
This is an important piece of legislation, and I thank everybody
who has contributed to it. The right hon. Member for North
Somerset, who led it, has been exemplary in bringing people
together and ensuring that the process is positive.
(Oxford West and Abingdon)
(LD)
I add my thanks to everybody, but especially to the right hon.
Member for North Somerset, for bringing this Bill. I agree that
the emails we have had have been so heart-warming. My constituent
Kelli, whose son Aaron has Down syndrome, said:
“I have three children, two older children without Down syndrome
and Aaron. I have the same fundamental desire for each of them:
that they are able to live happy and healthy lives, as far as
possible, given the realities of life for us all.”
She says the Bill gives her enormous hope. I am sure the hon.
Lady has had many similar emails.
Dr Cameron
Absolutely. That is the important reason we are all here—to make
a difference to constituents’ lives. The hon. Member has shown
that the Bill will have a positive impact on her constituent’s
life; I am sure that across the Chamber we have all had many
similar emails. The right hon. Member for North Somerset
addressed some of the hopes for other conditions, which were also
raised with me. I am pleased to support the Bill wholeheartedly
and to have seen it progress so rapidly.
(Bristol South) (Lab)
I congratulate my neighbour, the right hon. Member for North
Somerset, on his work and on bringing together so many colleagues
across the House. Everyone has worked enormously hard on this
Bill. I thank the Minister for her co-operation. We should have
more poachers turn game keepers—they are all terribly
welcome.
As Members have said, the families of the 40,000 people with Down
syndrome are all watching and listening to the debate carefully.
As my hon. Friend the Member for Nottingham North () previously said, we take
every opportunity to remove all the barriers and to tackle stigma
and the poverty of ambition that hold back progress in this area.
The Bill is the perfect opportunity to do that, particularly
around housing, mental health provision and education—all key
areas that can really improve and empower those with Down
syndrome across the country.
I welcome the Bill and the amendments. As the Minister said in
the last debate, the Government recognise that the legal duties
and frameworks are already in place. The duty under the Care Act
2014 is to assess people based on need and not diagnostic
categories. It is vital that every person’s needs are met to
ensure that they can fulfil their potential in their lives. This
Bill is about people, not a condition; as it is implemented, we
need to recognise that every individual will have their own
specific needs. Social care is facing unprecedented strain, so
new responsibilities must come with an assessment of
investment.
I welcome the Department’s commitment that new guidance will be
formed in consultation with partners, and a new burdens
assessment will be undertaken ahead of that guidance. As you
know, Ms Elliott, having chaired some of the sittings, I spent
six weeks in Committee on the Health and Care Bill throughout the
autumn. The provisions about having a named accountable person on
the integrated care system and the guidance are very important
and welcome developments. If the Government could learn from this
Bill and take that approach more widely to the current
legislation and other legislation, that would be not only good
practice but very welcome for Members of Parliament and our
constituents.
Our constituents expect us to see guidance and perhaps be part of
scrutinising it, raising objections and problems and improving
it—that is the role of a Member of Parliament—before that
guidance is developed by organisations that are not accountable
in the same way and imposed on our constituents. Bringing that
circle back, so that Parliament has a greater role in the
guidance, is really a very important step, and I hope that that
starts to permeate not only the Department of Health and Social
Care but other Departments and, indeed, current legislation.
I very much commend the right hon. Member for North Somerset for
introducing amendments 1 and 2. They will be landmark—really
important. I commend the Minister for working with the right hon.
Gentleman to agree to them, and I thank everybody involved in the
Bill. I agree with the right hon. Gentleman: this is an example
of how Parliament and the proper role of Members of Parliament
can be made real. That is only for the good of our
constituents.
The Minister for Care and Mental Health ()
It is an absolute pleasure to serve under your chairmanship, Ms
Elliott; I think it is the first time. I am delighted that the
Bill has received the same endorsement today from across parties
as it did on Second Reading. What can I say? My right hon. Friend
the Member for North Somerset has really set an example to all of
us. I guess that is the voice of experience—30 years in various
roles around this place, which have enabled him to optimise and
maximise the situation and to get all colleagues rowing in the
same direction. It is very important for a Member to do that if
they are to get their private Member’s Bill into legislation; as
we know, that is not typical.
Some 47,000 people in the UK have Down syndrome. It cannot be
right that people with Down syndrome and their families should
have to fight for access to appropriate services. I have seen
this personally, as my right hon. Friend mentioned, with my
nephew Joseph Gibson. Although Joseph is now happy and
thriving—he is 15 now —it has not always been easy for my brother
Marcus and sister-in-law Sara to secure the support that they
need and that meets his needs.
That is what we want to change through clause 1, which provides
that relevant authorities will be issued with guidance that they
will implement locally. The guidance will enable those
authorities to understand the needs of people with Down syndrome
and how best to meet them. Of course, we will consult widely on
the development of the guidance.
Once the guidance is published, the Government will keep it under
regular review and update it periodically to ensure that it
remains fit for purpose. It is very important that, when going
through the clauses of the Bill, we put the right things in
place, and that we do that with wide consultation. I thank my
right hon. Friend for tabling the amendment to require the
Government to lay the guidance before Parliament upon
publication, because people here have a lot of experience and a
lot to give. I am pleased to support amendment 1, which will
bring this important guidance to the attention of Parliament once
it has been published.
As well as the issue of other conditions, employment and
employment law were raised a great deal by the public, although
we did not address those issues in the Bill because of the
complexity that they would bring. Will the guidance given by the
Secretary of State include employment issues, so that those
issues can be addressed without requiring further
legislation?
First, I will deal with rare genetic disorders other than Down
syndrome. We recognise that people with genetic conditions other
than Down syndrome may experience problems similar to those of
people with Down syndrome, so we will consider the overlaps and
linkages between such conditions and Down syndrome through
consultation on the development of the guidance. I will go on to
address employment.
I commit that the Secretary of State will ensure through
statutory guidance that the integrated care boards will have a
named lead for overseeing the implementation of the guidance
issued under the Bill. That named lead will ensure that Down
syndrome statutory guidance is implemented and considered
throughout the commissioning decisions of an integrated care
board. That will play an important role in ensuring that there is
accountability for improvements at the local level and that the
intentions behind the Bill are fully raised across
Government.
Sir
Does the Minister accept that while many Down syndrome sufferers
can get into the workplace and make a real contribution, there
are others who are very profoundly affected—who cannot
communicate and have great behavioural problems? I know that from
experience with my wife’s family. These are not the Down syndrome
sufferers who we see in the media; these are people who often
have to be kept in a controlled environment with 24-hour
care.
9.45am
Down syndrome is a condition that has a very wide spectrum of
abilities, as many conditions do—and as we all do, as people. Of
course, the right support has to be provided for a whole range of
different capabilities. We were talking about a particular case,
and how important it is to get early access to speech therapy and
to hearing aids so that people can develop language. It is very
important to be able to maximise life chances.
Employment will differ for different people. The Government offer
a range of programmes to support people with
disabilities—learning or physical—to get into and stay in
employment. All those programmes can also help people with Down
syndrome. This includes the work and health programme and
intensive personalised employment support programme, which offer
personalised help and support for people with learning
disabilities to get into work. The Bill creates the foundations
to ensure that people with Down syndrome stay well, receive the
right education, secure the appropriate living arrangements—the
hon. Member for Bristol South mentioned the importance of the
right support around housing—and receive support to transition
into employment.
I feel proud that we can already see in our society that people
with Down syndrome can secure meaningful employment. That is
really important to their life, structure and self-esteem—as it
is to all of us here today. We will continue to explore any steps
required to make sure that people with Down syndrome can find
work, where it is right for them and where that is part of their
life’s journey. I expect to return to this issue in the
development of the statutory guidance.
I would like to give a few examples, because all of us have met
many people and seen the range of capabilities. Dilesh, who my
team have spoken with, lives in Barnet with his family. He said
he felt total inclusion at school, which was fundamental in
providing him with the skills to secure a supported internship as
a Project Search ambassador. Dilesh continued this role on a
temporary basis and is working closely with his local jobcentre
to find another job he enjoys. His mum believes the jobcentre has
gone above and beyond to support him to reach his full
potential.
We can also see big strides in representation that inspires
people with Down syndrome to seek employment that truly matters
to them. George Webster joined the BBC at 21 as the broadcaster’s
first ever children’s presenter with Down syndrome. Ellie
Goldstein, who has been a model since she was 15, has recently
been in big campaigns for Gucci and Vogue while also studying
performing arts.
On a world stage, George and Ellie are making big strides for
representation and inspiring children, young people—not just with
Down syndrome but with learning disabilities in general—and
adults everywhere. Of course, we must also mention Tommy Jessop,
who was very much part of a fantastic show that we have all
enjoyed, and of this Bill as well. There are many role models
now, and it is fantastic that they are being celebrated and seen
much more in roles on our TV screens and in the media.
Dr Cameron
The Minister is making some extremely important points. Would she
agree with me that it is very important that as many hon. Members
as possible also engage in the disability confidence scheme in
the workplace, to help employ and offer work-experience
placements to people with disabilities in their constituency
offices? Is it not also important that Members consider
supporting the Speaker’s disability internship programme, which
has been very successful in this House?
As one of the Ministers who is a disability champion, I
completely agree. It is only when one tries to take a view from
the perspective of someone who has some kind of disability that
it becomes possible to understand how difficult it is to do many
daily things. Whether it is people with physical or learning
disabilities, the more that we understand their perspective the
more we can accommodate them. That, of course, makes a massive
difference for somebody who has more to deal with on a daily
basis than perhaps we do. It is important that we all take up the
training that we are offered.
I thank my right hon. Friend for tabling amendment 3, which
updates the long title of the Bill. I agree with those proposals.
As outlined, this guidance only applies to England, as
healthcare, education and housing are all devolved matters. I
know there is also firm commitment from my counterparts to
improve the outcomes for people with Down syndrome in Scotland,
Wales and Northern Ireland, including through legislation. I look
forward to working collaboratively with the devolved
Administrations on this matter.
Regarding the schedule, it is important to have clarity within
the Bill about who the relevant authorities are, and what
functions the guidance will apply to. The list of authorities and
their functions has been drawn from existing legislation, such as
the Care Act 2014, the Children and Families Act 2014 and the
Housing Act 2004. For that reason, the Government support the
schedule.
This Bill is hugely significant. It will improve the lives of
people with Down syndrome, improve their prospects and improve
their families’ lives. I am proud to support it on behalf of the
Government as it progresses through Parliament. I thank all the
hon. Members for their support. To be in this privileged
position, and to be able to use that privilege to make a massive
difference to people, is probably what brought most of us here. I
thank everybody for their support of the Bill.
One question that was often asked before Second Reading, and
continues to be asked, is: “Why Down syndrome?” Many have written
to all members of the Committee, I imagine, saying, “Why pick a
particular condition? Why not simply have it lumped in with
learning difficulties?” The point is that those with Down
syndrome and their families know that it is much more than “just”
another learning difficulty.
There is the addition of complex health conditions—very complex,
in many cases. The changes in demographics, which we discussed on
Second Reading—for the first time, many of those with Down
syndrome will outlive their parents—bring an element of the
importance of care into the equation. Rather than singling out a
single grouping, we have shown the increasingly complex needs
that a range of different conditions will require, as medical
science improves and we have greater life expectancy, which is
something we should celebrate, as a society.
The point has been made, as it was on Second Reading, that this
Bill is not about a condition, but about people—people who have a
particular condition, their families, and the people who care for
them. We are talking about individuals who, I believe, have for
too long been more vulnerable than they need to be, and were
overlooked by a series of pieces of legislation, which did not
adequately take into account the combination of needs that they
uniquely have.
We all come to this Bill from our personal experiences. As I said
in the Chamber, my personal experience is through growing up next
door to someone with Down syndrome, from working with people with
Down syndrome and, as a doctor, coming into contact with a lot of
them. I would like to say a couple of things about what this Bill
is not. First, it is not a UK Bill; we purposely took that
decision very early on. We could have made it a United Kingdom
piece of legislation, and effectively confronted the Welsh,
Scottish and Northern Ireland Governments, saying, “You must give
us the legislative consent.” That would not have been in the
interest of people with Down syndrome. It would have made it a
constitutional Bill, with the arguments becoming about
constitutional propriety and not about those who are actually
involved.
I hope that, with the House of Commons taking this decision, we
will see legislation from the devolved parts of the UK giving
equal rights to those who live under those devolved systems. It
should not matter where someone lives in the United Kingdom; they
should have access to the same quality services, the same
representation, and the same parliamentary remedies as anybody
else. That is why the Bill was designed as it has been.
Dr Cameron
I thank the right hon. Gentleman for bringing those issues to the
attention of the Committee. The Scottish Government are well
aware of the Bill and its merits. They have had discussions and
indicated that they will be taking similar types of legislation
through their own processes, to see progress made.
I am obviously aware of the discussions that we have had around
that. I hope that the devolved Administrations will look at the
timetable of the Bill’s passage through Parliament and when it is
likely to get Royal Assent, to ensure that there is no time gap
between the rights of those with Down syndrome in England and
those in other parts of the UK. Those who the devolved
Administrations represent should expect no less.
My final thought is that, as with any piece of legislation, this
Bill will not be perfect. No Bill is perfect and no Bill requires
no further work or changes, but getting the legislation on the
statute book is, in itself, a statement of intent. It is a
statement of recognition of the needs of those with Down
syndrome. We know that private Members’ Bills will generally be
limited in scope if they are to get through the House of Commons,
but I believe the amendments to the Bill have, as I said earlier,
taken it from being a good and well meaning Bill to a landmark
Bill: we have signalled not just intent, but how we will give
effect to that intent.
All too often we pass legislation in Parliament that sets out
great rights and therefore expectations, but we do not set out
the mechanisms by which those expectations can be realised. That
is the real importance of the amendments. They may look small
today and may not be commanding the front pages tomorrow, because
they were not accompanied by bottles of wine, but it is important
that the Committee understands the importance of what we are
about to vote for. We have shown, by setting the guidance in
front of Parliament, that there is a link between those who
require change and those who can institute the change. That is as
it should be, and that is exactly what those we represent have a
right to expect.
Amendment 1 agreed to.
Amendment made: 2, in clause 1, page 1, line 12, leave out “(4)”
and insert “(4A)”.—(.)
This amendment is consequential on Amendment 1.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2 ordered to stand part of the Bill.
Schedule agreed to.
Amendment made: 3, title, line 1, leave out from “syndrome;” to
second “and” in line 3.—(.)
This amendment brings the long title into line with the content
of the Bill.
On a point of order, Ms Elliott. To end our proceedings, I thank
you for chairing the Committee, the Clerks for all the work they
have done behind the scenes, the Hansard officials, the
departmental officials, the Minister and all our own
parliamentary teams, who have done a great deal of work. We may
be the ones who get the front row seats, but we would not be here
without those in our teams, who do all the work on our behalf. I
thank all of them on behalf of the Committee for getting us to
where we are today.
Bill, as amended, to be reported.
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