Scottish Mental Health Law Review consultation

We would agree with the principle in the review that there needs to be significant lived
experience input at all levels of service delivery.

This must include disabled people with mental health issues, people with a learning
disability and neurodiverse people. This should include people with lived experience
feeling that they have ownership of scrutiny bodies, through equal roles in inspection and
in governance.

We welcome the four core principles that will underpin the reform proposals and would
agree that Respect for dignity provides a basis for the claims of economic, social and
cultural rights, such as rights to health, housing, employment and social security and
also provides a lens to assess whether interventions in someone’s life via incapacity or
mental health legislation are justified or necessary and the need to always to keep the
unique individual affected by the law at the centre of the law and its application.

Respect for autonomy is fundamental to the United Nations Convention of the Rights
of Disabled People (UNCRPD) with respect to legal capacity and respect for rights, will
and preferences (which we will refer to in more detail in our comments on supported
decision making). Non-discrimination and equality which may require more
favourable treatment for disabled people to achieve an equitable outcome and
Inclusion which the review consultation document sees as including ‘meaningful
access to independent living, to fulfilling work, to friendships and social connections,
and to culture and creativity.

Disabled people’s own definition of independent living is instructive here. Disabled
people have defined independent living as “all disabled people having the same
freedom, choice, dignity and control as other citizens at home, work and in the
community. It does not necessarily mean living by yourself or fending for yourself. It
means rights to practical assistance and support to participate in society and live an
ordinary life”. This is consistent with Article 19 of the UNCRPD.

We welcome the assertion that reform proposals seek to strike a balance – ‘ensuring
that everyone has a right to appropriate care and support within the context of the core
human rights obligations, while also strengthening the power of the Mental Health
Tribunal to ensure that people are not subject to compulsion or greater restrictions
because of a failure to provide appropriate support.’

We would agree that sections 25-27 and sections 260-261 of the 2003 Act should be
extended and reframed to set out clear and attributable duties on NHS Boards and local
authorities to provide mental health support to disabled people, including a right to
adequate housing and independent living, action to address isolation and loneliness and
the provision of accessible information.

Evidence to the Review highlights a number of issues around poverty and access to
employment.

Poverty is linked to being one or more of the following in Scotland: a disabled person;
an older woman; a lone parent (usually women); a Black or minority ethnic woman with
children; an unpaid carer (usually women); or children, including those with working
parents on low incomes and insufficient social protection. These intersections of
disability, gender, race, and class compound people’s income poverty, increase their
time poverty, and impact on their mental health.

Nearly half (49%) of all those living in poverty in the UK, are either disabled people or
live in a household containing a disabled person.

The official measure of poverty (households living on less than 60% of median income)
fails to take into account the additional costs associated with disability. In 2018 Scope
found that Scots disabled people spent on average £632 a month on disability-related
expenses (e.g., taxis, increased use of heating, special equipment, care costs, etc.).
These are the highest excess costs in the UK. Disabled people had, on average,
£108,000 fewer savings than non-disabled people.

Once these costs are taken into account fully, half a million (500,000) Scottish disabled
people and their families are living in poverty, 48% of the total of all people in Scotland
living in poverty, despite making up only 22% of the population.

Even using the official measure of poverty, according to Scottish Government figures
one in four (24%) Scot’s children were living in poverty in 2018/19 but in households
containing a disabled adult or child, the rate of poverty among children rose to 29%.
This meant that nearly half (45% or 100,000) of all the children living in poverty in
Scotland were to be found in households containing a disabled person

Disabled people, including children or children living with a disabled adult who are
living in poverty in Scotland experience many disadvantages which can have negative
health and social consequences throughout their life and can lead to them having
poorer mental health, developmental and educational outcomes than their more
affluent peers, creating health inequalities.

We believe any approach to financial inclusion in the Scottish Government’s mental
health strategy, and more broadly, must directly engage with the relationship between
poverty, barriers to employment, extra costs of disability and mental health for disabled
people and should address particular issues, such as disruption to benefits when
admitted to hospital, failure of DWP benefits assessors to recognise mental health
conditions as disabling, and the impact of the sanctions regime on the mental health of
disabled people.

We would agree that developing a comprehensive regime of supported decision-making is essential if Scotland is to meet the requirements of Article 12 of the UNCRPD, and we welcome the Review’s recognition of the importance of putting in place a framework for supported decision-making.

In a General Comment on Article 12 published in April 2014, the United Nations
Committee on the Rights of Persons with Disabilities (CRPD) stated:
“State Parties have an obligation to provide persons with disabilities with access to
support in the exercise of their legal capacity”

This includes supported decision-making, and can include peer support, advocacy
(including peer- or self-advocacy support), or assistance with communication.

The General Comment also made clear that only “after significant efforts have been
made, it is not practicable to determine the will and preferences of an individual, the
“best interpretation of will and preferences” must replace the “best interests”
determinations.”

In other words, even where there is a “statement of will and preferences”,
professionals must still make every practicable effort to ensure that the person is
supported to make a decision in specific circumstances, even if this is contrary to the
statement of will and preferences. We all have the right to change our mind.

Supported decision-making should be based on the principles that:
 All people have a right to make own decisions
 The decision maker is in charge
 It is about assisting the decision maker to make the decision they think is best
for them – including right to make mistakes
 Are measured, fair and free from undue influence
 This can include support to implement the decision

The CRPD Committee has made it clear that they consider supported decision making
should replace substitute decision making arrangements as these are discriminatory
and deny the equal enjoyment of the right of disabled people to exercise legal
capacity.

The UNCRPD Committee in its General Comment Number 1 refers to supported
decision-making in relation to the legal right of disabled people to access support for
the exercise of their legal agency. It sets out some informal and formal means by
which support may be provided. These include:
- By one or more trusted persons, peer support and independent advocacy
- Assistance with communication as appropriate to the needs of the individual,
particularly for those who use non-verbal forms of communication to express their
will and preferences
- Advance care planning – including providing support to a person to complete an
advance planning process
- Specialist support in legal and administrative proceedings
- Communities and support (collective advocacy)

Inclusion Scotland believes that support for decision-making and support to exercise
legal capacity must be available for everyone but that the nature of support for learning
disabled people will need to be different than for other groups (as the consultation
report acknowledges in some places.

As People First (Scotland) warn substituted decision-making is often viewed (and is)
much easier for families, care givers and service providers than spending time
supporting autonomy and self-determination for those with a learning disability and,
therefore, is likely to be the preferred route unless there are blocks in place to prevent
that misuse of power and influence.

We would agree with People First (Scotland) that the barriers to an effective wide-ranging supported decision-making scheme include the widely held belief that learning
disabled people are, by virtue of their intellectual impairment, incapable of making their
own decisions and the costs of supported decision making.

The SDM scheme must be taken forward in partnership with those will benefit from
the scheme. We cannot emphasise enough the importance of lived experience
participation, ideally in a leading role.

It should be recognised that “advocacy” and “decision support” are not the same
thing, and the disabled person should have access to whichever service is most
appropriate to meet their needs in the specific circumstances.

Again we concur with People First (Scotland) with their concerns about existing
independent advocacy organisations having the responsibility to deliver support for
decision-making.

While we agree that some independent advocacy organisations already do some
form of supported decision-making for some people, that is not always the case. We
know of lots of examples where lead professionals or clinicians have selected which
advocacy organisations are allowed to be involved on the basis of their compliance
with those who hold power. We also believe that it would be relatively easy for local
authorities and health boards to simply add “support for decision-making” to existing
advocacy contracts without any increase in the funding to allow it to happen properly.

Inclusion Scotland would support a Centre for Excellence for Supported Decision-Making.

Like People First (Scotland) we believe that there should be legal duties on public
bodies to deliver supported decision-making. As the report points out, the entitlement
to advocacy under the Mental Health Act has not resulted in adequate advocacy
provision so we need something stronger. We await with interest to see the impacts
of the right to advocacy within social security legislation in Scotland.

Inclusion Scotland fully supports the principle that human rights should inform
decisions about support, care and treatment of all individuals, including disabled
people, autistic people and people with learning disabilities. However, we are
concerned that the “human rights enablement” as currently envisaged by the Review
is based on a negative approach to human rights – i.e., when it can be justified to
restrict a person’s human rights – rather than a positive approach – i.e., what support
does a person need to be able to fully exercise their human rights.

As People First (Scotland) make clear ‘other citizens, who are not classified as
mentally disordered have their human rights protected by human rights legislation and
by the courts (when rights are to be removed or limited). We want those same
systems to be applied to us.’

There are too many instances within the Review’s recommendations where a
professional may exercise a judgement that it is justifiable to restrict the human rights
of an autistic person or person with a learning disability. This is akin to a “best
interests” test, and, unless the same criteria are used for non-disabled people,
discriminatory.

This is particularly important where deprivation of liberty is being considered.
Article 14 of the UNCRPD states:
States Parties shall ensure that persons with disabilities, on an equal basis with
others:
(a) Enjoy the right to liberty and security of person.
(b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation
of liberty is in conformity with the law, and that the existence of a disability shall in
no case justify a deprivation of liberty.

Article 25 requires health professionals to provide care of the same quality to
persons with disabilities as to others.

In summary, autistic people and people with learning disability should have the right
to access mental health services on the same basis as any other person, and that they
should not be subjected to additional restrictions.

Inclusion Scotland agrees that Scotland needs to stop using hospitals to detain
autistic people and people with learning disability. One of the fundamental reasons
why Inclusion Scotland called for the removal of autism and learning disabilities from
the definition of “mental disorder” in the Mental Health Act is that they are life-long
conditions that are not “treatable”.

Autistic people and people with learning disability have the same right as anyone
else to live where and with whom they want to live. Article 19 of the UNCRPD requires
State Parties to recognise the equal right of all disabled people to live in the
community, with choices equal to others, and to take effective and appropriate
measures to facilitate full enjoyment by persons with disabilities of this right and their
full inclusion and participation in the community.

The UN CRPD’s General Comment on Article 12 also makes significant
observations relevant to compulsory detention and compulsory treatment:
“The denial of the legal capacity of persons with disabilities and their detention in
institutions against their will, either without their consent or with the consent of a
substitute decision-maker, is an ongoing problem. This practice constitutes arbitrary
deprivation of liberty and violates articles 12 and 14 of the Convention.” and
“Forced treatment by psychiatric and other health and medical professionals is a violation
of the right to equal recognition before the law and an infringement of the rights to
personal integrity (art. 17); freedom from torture (art. 15); and freedom from violence,
exploitation and abuse (art. 16).”

Inclusion Scotland urges the review to work towards law that removes
discrimination in detention and compulsory treatment on the basis of disability.

Whilst recognising that it will take time to develop new community-based support
services to replace all existing services, Inclusion Scotland demands that the Review
should be unequivocal in stating that detention and compulsory treatment on basis of
disability is unacceptable and must be ended as soon as practicable.

Inclusion Scotland questions whether Mental Health Officers have either the
capacity or the capabilities to carry out Human Rights Assessments. By definition,
MHOs are specialists in mental health. This does not mean that they have the
knowledge or expertise needed to make assessments for people with learning
disabilities or autistic people.

In addition, there is a chronic shortage of MHOs. A 2019 Mental Welfare
Commission Monitoring Report4 shows that 50% of Emergency Detention Orders
under the Mental Health Act were granted without the statutory Mental Health Officer
consent. The MWC Report also highlights other areas where MHO reports were not
being provided as required, for example Social Circumstances Reports and reminded
local authorities “of their duties under legislation to designate MHOs for each patient’s
case and to appoint sufficient MHOs for the purpose of discharging statutory
functions.”

None of this gives confidence that MHOs would be able to provide human rights
assessments in every case before any decision is taken to limit a person’s human
rights.

We fundamentally oppose the idea of an autonomous decision making (ADM) test for
people with intellectual impairment. Again, there may be a place for this for people in a
severe mental ill-health crisis but not for people with a lifelong intellectual impairment
when there is no severe mental illness.

There is no obvious difference between an ADM and a test of capacity or a SIDMA
(Significantly impaired decision-making assessment). People First (Scotland) have
outlined that both tests are applied to learning disabled people on the grounds of being
intellectually impaired ‘rather than any kind of serious attempt to work out what we may
have difficulty with and need support for. They have never been decision specific as they
are required to be.’

An ADM contradicts the idea of support for autonomous decision-making. ADM is a
deficit-based idea and SDM is asset-based. The UNCRPD committee General
Comment 1 on Article 12 rights, holds that:
‘Mental capacity is not, as is commonly presented, an objective, scientific and
naturally occurring phenomenon. Mental capacity is contingent on social and political
contexts, as are the disciplines, professions and practices which play a dominant role
in assessing mental capacity.

[Capacity assessment] is often based on whether a person can understand the nature
and consequences of a decision and/or whether he or she can use or weigh the relevant
information. This approach is flawed for two key reasons: (a) it is discriminatorily applied
to people with disabilities; and (b) it presumes to be able to accurately assess the inner-workings of the human mind and, when the person does not pass the assessment, it
then denies him or her a core human right — the right to equal recognition before the
law. In all of those approaches, a person’s disability and/or decision-making skills are
taken as legitimate grounds for denying his or her legal capacity and lowering his or her
status as a person before the law. Article 12 does not permit such discriminatory denial
of legal capacity, but, rather, requires that support be provided in the exercise of legal
capacity. [section 15]

We think the proposal to introduce an Autonomous Decision-Making test is not
compliant with UNCRPD requirements.

Coercion on the grounds of disability can never be justified. While there may be a
place for coercion in the treatment of some elements of severe mental ill-health
episodes, those circumstances do not apply to people who are intellectually impaired
or neurodiverse and who do not experience severe mental ill-health.

Inclusion Scotland is unclear why the Mental Welfare Commission and Mental
Health Tribunals would be appropriate for monitoring whether neurodiverse people
and people with learning disabilities are receiving the support they require, except in
circumstances where they have mental health problems. In these circumstances, they
should be subject to the same criteria as anyone else under the Mental Health Act.

Inclusion Scotland supports the recommendation to end Guardianships with the person
supported under a new decision-making framework, and supports the decision-making
supporter as described being formalised.

We agree with People First (Scotland) that any decision-making supporter should be
able to express their own views and give advice as they would for their own friends
and family members when offering support to them. Such views and advice should be
governed by the decision-making support framework and always declared as personal
views and advice. In that respect, we do not think there would be a need for a co-decision maker since the ultimate decision should clearly be the person’s own, regardless of how much advice and shared views they have had. People First (Scotland) have serious reservations about decision-making representatives. Most importantly, if the person is to be appointed without the consent of the person this is not very different from the current Guardianship arrangement that provides little to no
safeguards.

We agree with People First (Scotland) that formalising the relationship into Power of
Attorney would be a useful addition and extension to the role for some people so that
they have an agent acting on behalf of the person rather than instead of the person.
However, we think that PoA needs to be reframed to be compliant with Article 12 of
the UNCRPD so that substitute decision-making is avoided and support and
interpretation of will and preference are the expected components of the role. We
agree that access to funds and management of finances should be incorporated into
decision support arrangements. We support the idea of supervision of the roles.

The Independent Review of Learning Disability and Autism in the Mental Health Act (the
Rome Review) concluded that the Mental Health (Care and Treatment) (Scotland) Act
2003 had led to specific negative effects on the human rights of autistic people and
people with intellectual disability.

Evidence for this was summarised in section 1.4 of its final report. The negative effects
were mainly indirect discrimination: the Mental Health Act was being applied to all people
with ‘mental disorder’ including people with learning disability through similar processes,
but there was evidence of more negative effects for autistic people and people with
intellectual disability.

We are glad therefore that the review is looking at the broad range of issues with the
definition of mental disorder including the tension between the requirement for a mental
disorder to justify detention under ECHR, and the more recent requirements from the
UNCRPD to avoid disability discrimination in mental health detention.

However in the context described above we want to see the review being unambiguously
clear in its support for the Rome Review recommendation that learning disability and
autism should no longer be seen as ‘mental disorders’ under mental health law and for
the development of separate non-mental health legislation to provide a system of support
for neurodiverse people and those with a learning disability to achieve their equity and
human rights. This would be in line with a recent Scottish Government commitment: “To
uphold and protect the rights of people with autism or learning/intellectual disabilities, we
will take forward a Learning Disability, Autism and Neurodiversity Bill, with scoping work
carried out in 2021-22. (page 49 A Fairer, Greener Scotland – Programme for
Government).

Our view is that unless and until neurodiverse and learning disabled people (with and
without mental health problems) have a legislative framework that provides mental
support to those who need it and non-mental health support designed to protect and
promote their rights they may be trapped in inappropriate mental health settings and
services and regimes of substituted decision making that impinge upon their enjoyment
of their human rights.

As People First (Scotland) have explained in their response to this review using the term
mental disorder within the review ‘assumes it is a legitimate and recognised grouping
when it is disputed and contested, especially by sections of the community who currently
are classified in this way.’ They go on to say: ’to continue to make recommendations as if
the groups (classified as having a ‘mental disorder’) shared their characteristics is to
adopt a hit and miss approach. Our experience of mental health legislation (and to a
great extent the operation of the Review itself) has “hit” those with severe mental illhealth and “missed” those of us with lifelong intellectual impairments. We greatly fear that would continue if we and these very different groups were to be lumped in together as if
they were the same thing.”

The Rome Review also left room for some people with autism and/or learning disability to
be detained even if they don’t have a mental illness. We believe this legal loophole is
incompatible with Article 5 (ECHR) rights to liberty and security of person and Article 12
(UNCRPD) rights to equal recognition before the law and to recognition of autonomy.

We do not support convergence of mental health, incapacity and adult protection
legislation even though we recognise that the way the three Acts work together at
present may not always offer the right help for an individual in the right way at the
right time. We would support better alignment of the law rather than a leap to a single
piece of legislation with common principles, safeguards, routes to remedy etc., but
maintain appropriate differences for people who may fall within adult protection,
adults with incapacity or mental health legislation.

We remain committed to seeing separate legislation and separate systems of support
to cover people with intellectual impairment and/or neurodiversity who do not have a
mental health problem.