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Publication - Report

Consultation on the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD): analysis of responses

Published: 18 Nov 2016
Part of:
Communities and third sector, Equality and rights
ISBN:
9781786525642

Presents a summary of the analysis from the consultation on our Draft Delivery Plan for 2016 to 2020 on the UNCRPD.

220 page PDF

1.3MB

220 page PDF

1.3MB

Contents
Consultation on the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD): analysis of responses
5. Outcome 2 - Equal and inclusive access to healthcare provision and support for independent living, with control over the best use of resources and support for disabled children

220 page PDF

1.3MB

5. Outcome 2 - Equal and inclusive access to healthcare provision and support for independent living, with control over the best use of resources and support for disabled children

Nineteen commitments were included under Outcome 2. Consultees were asked if they agreed or disagreed that these commitments would help the Scottish Government make progress towards Outcome 2.

Q6: Do you agree or disagree that the commitments (17-35) described at Section 2.2 will help the Scottish Government make progress towards outcome 2?

Sixty-six consultees responded to this question. Overall the majority of those who responded agreed that these commitments would help the Scottish Government make progress towards Outcome 2. Nearly three-quarters (73%) of those who responded agreed, 8% disagreed, whilst one-fifth (20%) said that they neither agreed nor disagreed.

Q6: Do you agree or disagree that the commitments (17-35) described at Section 2.2 will help the Scottish Government make progress towards outcome 2?

Q7: If you would like to make specific comments on any of the commitments intended to contribute to achieving outcome 2, please do so here. If not please skip to next question.

Question 7 asked consultees for specific comments about any of the nineteen commitments included under outcome 2. Commitment 17 (Health Inequalities of people with learning disabilities data collection) and commitment 20 (Routes to Inclusion - 'Engaging disabled people and their organisations') received the most comments, each receiving 27 comments, while commitment 22 ( NHS - 2 year internship for disabled graduates in partnership with NHS Scotland and Glasgow Centre for Inclusive Living Equality Academy) received the fewest comments (12).

Table 22: Number of comments for each of the outcome 2 commitments

Commitment (Outcome 1) No. of comments received
17. Health Inequalities of people with learning disabilities data collection 27
18. Advocacy 26
19. The New framework for Hearing the Citizen Voice 21
20. Routes to Inclusion - 'Engaging disabled people and their organisations' 27
21. Allied Health Professionals and Independent Living - delivery plan 22
22. NHS - 2 year internship for disabled graduates in partnership with NHSScotland and Glasgow Centre for Inclusive Living Equality Academy 12
23. NHS Scotland Learning Disability Employment Programme 17
24. Disability Inclusion Promotional Campaign 19
25. Measure compliance of NHS Boards on embracing equality diversity and human rights in the NHS in Scotland 21
26. Child Rights and Wellbeing Impact Assessment ( CRWIA) for all policy development affecting children 22
27. Fund for projects to support disabled children and their families 20
28. Information Hub 21
29. Transitions Test of Change Project 17
30. Child Internet Safety stakeholder group 13
31. Review of inclusion of people with learning disabilities or autistic spectrum disorders under the Mental Health (Care and Treatment) (Scotland) Act 2003. 20
32. Consult on Scottish Law Commission's review of the Adults with Incapacity Act and thereafter carry out a scoping exercise in relation to a wider review of the Adults with Incapacity legislation. 21
33. Review of policies on guardianship and consider circumstances in which supported decision making can be promoted 18
34. An integrated children's rights and equalities impact assessment for the Scottish Children's Reporter Administration 14
35. Enhanced learning and development framework for foster carers 16

Health: Care, Support and Rights

Commitment 17. Health Inequalities of people with learning disabilities data collection

17. Health Inequalities of people with learning disabilities data collection - research has indicated that people with learning disabilities die younger and this can be avoided. The Scottish Government will work with partners to support the use of the data in the development of NHS action plans to improve health services. These plans will help NHS Boards to identify what people with learning disabilities need and address the health inequalities to reduce early mortality. (2016-17)

Consultees were generally supportive of this commitment, but there were calls for it to be extended to cover all disabilities. There were also calls to address the causes of health inequalities. Table 23, below, outlines the key themes identified for commitment 17.

Table 23: themes identified under commitment 17

Theme identified Number of comments relating to this theme
Generally supportive 14
Widen scope of commitment 12
Gathering the data 9
Addressing the cause of health inequalities 4
Engagement 1
Other 4

Widen scope of commitment

Whilst being generally supportive of the commitment, there were calls for it to be extended beyond those with learning disabilities and to include people with all disabilities, as people with disabilities other than learning disabilities also suffer from health inequalities. Specific groups mentioned included: people with HIV; people with mental health problems; people with cerebral palsy; and people who are D/deaf.

"We agree that this is a worthwhile area of work, however we do not agree that this should be limited towards those with a learning disability. Improved data collection and sharing of information is critical to deliver more effective services for all disabled people."

Third sector / equality organisation - National Deaf Children's Society

There were also calls for the data collection to extend beyond health boards and include Health and Social Care Partnerships.

Gathering the data

Some consultees commented on the practicalities of collecting the data, or had specific requests, such as identifying gaps around people with complex needs, or requesting more detailed information, such as inclusion of data on communication support needs. Other consultees commented on the need to link data, for example data linkage from different data sets and linking in to commitments in the Mental Health (Scotland) Act. Some consultees referenced the Keys to Life Strategy. One consultee commented that this data might be biased towards those who are in receipt of formal support services, rather than those who have no or few support needs and may not be known by local authorities. Wider sources of data collection, therefore, might be required.

"The keys to life learning disability strategy prioritises this data collection and data linkage between different data sets. This is an important example of the need for Scottish Government departments to work together to implement this strategy."

Third sector / equality organisation - Scottish Commission for Learning Disability

"Capability Scotland would strongly support this commitment. It should be recognised that the data in this regard is biased towards those with learning disabilities who require formal support services and away from those who have no, or few, support needs and who therefore may not be known to local authorities… It may be increasingly necessary to collect data from sources other than local authorities, such as directly from colleges, day centres and supported employment agencies."

Third sector / equality organisation - Capability Scotland

Addressing the cause of health inequalities

There was a belief that the causes of health inequalities needed to be addressed in addition to gathering data on them.

"Over 70% of online respondents felt that better data collection and subsequent research could help tackle health inequalities amongst people with learning difficulties. However, respondents also felt that a lack of resources, specialist staff and insufficient staff training within the NHS was contributing to health inequalities for people with learning difficulties and that these issues should be addressed directly rather than a sole commitment to improving data quality in this area."

Third sector / equality organisation - Scottish Disability Equality Forum

Engagement

Engagement with relevant stakeholders was also mentioned.

Other

Other comments related to learning disabilities in a wider sense, rather than in relation to data collection and included the need to ensure that NHS staff have a better understanding of learning disabilities. There was also a comment that not all inequalities experienced by people with learning disabilities are health inequalities and that better support to interact in their communities would benefit people with learning disabilities and reduce social inequalities.

Commitment 18. Advocacy

18. Advocacy - the Scottish Government will work in partnership with advocacy partners to ensure the voice of people with learning disabilities is heard. (2016-17)

Whilst most who commented were broadly supportive of this commitment, there was a belief that advocacy should be extended beyond people with learning disabilities to other disabilities. Table 24, below, shows the key themes identified for commitment 18.

Table 24: themes identified under commitment 18

Theme identified Number of comments relating to this theme
Generally supportive 19
Widen out advocacy to other groups 15
Implementation 13
Dissatisfaction with current advocacy arrangements 3
Building awareness of advocacy 2
Critical comments 5

Generally supportive

There was a general feeling that advocacy for people with learning disabilities was a good thing and could help to empower them.

"Advocacy can help to ensure that people with learning disabilities have the information they need to make decisions about all aspects of their lives, including the care and support they receive."

Third sector / equality organisation - Scottish Learning Disabilities Observatory

Widen out advocacy to other groups

Whilst there was support for advocacy for people with learning disabilities, there were questions about why this commitment was limited to advocacy for those with learning disabilities and calls for advocacy to be extended to other groups. It was commented that people with any disability should have access to advocacy, and a number of consultees stressed the importance of advocacy for children and young people. There was a suggestion that advocacy provision should include family and carers. The importance of advocacy at different stages, including transition points for disabled young people, was noted and should be made available across all health interventions, including for those who are in-patients and out-patients.

"The vagueness of this commitment and its narrow focus on people with learning disabilities was a source of great concern, and even fear, for a number of disabled people we consulted. There was felt to be a danger that this commitment has potential to narrow down the scope of who gets advocacy for what. While in no way denying the importance of advocacy for people with learning disabilities, it is crucial that advocacy is available to all disabled people who need it. This point was made forcibly by young disabled people and by LGBT disabled people, and was also mentioned at other events we held. It was felt that, 'disabled people are not listened to - this is why we need independent advocacy' (young disabled person at Glasgow event) and that, 'the right to independent advocacy should be enshrined for all disabled people.' ( LGBT disabled people's event)."

Third sector / equality organisation - Inclusion Scotland

"All children and young people have the right to have their views, wishes and feelings taken into account when decisions are made about their lives (article 12, UNCRC). This is particularly important for disabled children and young people and the importance of high quality independent advocacy cannot be stressed enough. The advocacy process itself can improve a child or young person's confidence and self esteem and enhance their independence. This is particularly important for children and young people with communication needs or severe learning disabilities, where assumptions are often made that the child is lacking capacity and is unable to express a view or contribute to complex decision making. There is much evidence to show that this is not the case, but rather the contrary if they are supported and enabled to do so through advocacy."

Public Body - Children and Young People's Commissioner

Implementation

A number of consultees commented on the funding and delivering of advocacy services, and emphasised the importance of adequately resourcing them. The establishment of a national advocacy service was called for, and the importance of advocacy being independent was also emphasised. It was also suggested that advocacy should be made more accessible, and that adherence to advocacy duty should be monitored.

"I write as a Trustee of an Advocacy Charity. The importance of such resources in achieving a proper balance and securing a voice in what can be a complex, bureaucratic and legalistic process cannot be overstated."

Individual

"There was a call for a National Disability Advocacy Service for all disabled people to support or replace often patchy provision provided by local groups who often rely on volunteers. The need for communication support and interpretation to be provided and funded as part of advocacy provision was also discussed by respondents at the road shows."

Third sector / equality organisation - Scottish Disability Equality Forum

Dissatisfaction with current advocacy provision

Some consultees took the opportunity to voice their dissatisfaction with current advocacy provision. It was commented that disabled people's voices were not being heard and that they were not being listened to in relation to decisions affecting them, particularly those with mental health conditions or learning disabilities. It was stated that advocacy services could be hard to find, or hard to access, and some dissatisfaction was expressed with the quality of some advocacy provision.

"The consequences of not having access to advocacy include the loss of voice, choice and control (as necessary for independent living) when it comes to important decisions affecting disabled people's lives. There were numerous examples given of disabled people's voices not being heard: "Everyone else seems to decide what's best for me". Professional people, including people working for care agencies, could be intimidating and "Medics don't' talk to me, they talk to my parents" (disabled young people)."

Third sector / equality organisation - Inclusion Scotland

Building awareness of advocacy

It was believed that there should be a greater awareness around the role of advocacy both amongst disabled people and health and social care professionals.

Critical comments

There were a few comments which were critical of the proposal, including the belief that the commitment was too vague and too narrow. Some consultees also preferred professionals to communicate directly with the disabled person or their family without the need for an advocate.

Commitment 19. The New framework for Hearing the Citizen Voice

19. The New framework for Hearing the Citizen Voice - the Scottish Government will implement this new framework which will operate across health and social care. Tests of Change, Citizen Voice Hub, Gathering Stories and a Citizens Panel will add value at individual, local and national level, supporting improvement and empowering people to be equal partners in their care. By the end of 2017 we will have systems and processes at local and national level for involving people in improving services and evidence to support this citizen participation. (2016-17)

Consultees were generally supportive of this commitment, and provided comments about how it should work in practice. Engaging with disabled people and inclusive communication were particularly highlighted. Table 25, below, shows the key themes identified for commitment 19.

Table 25: themes identified under commitment 19

Theme identified Number of comments relating to this theme
Generally supportive 10
Implementation 18
Critical comments 2
Other 1

Generally supportive

A number of consultees were generally supportive of this commitment.

"We support the principle of citizen participation and believe this approach has the potential to contribute to the evidence base for service improvement. We believe this approach will help to increase awareness of the reasonable adjustments that are necessary to underpin effective action to address the inequalities experienced by different groups."

Third sector / equality organisation - Scottish Learning Disabilities Observatory

Implementation

Some consultees commented on how hearing the Citizen Voice should work in practice. It was believed that the system needed to be "joined up", and that engagement was required with relevant stakeholders, including disabled people. It was noted that people with learning disabilities and complex needs should be included in the process. Some suggested that families and carers should also be included. The importance of inclusive communication was highlighted. It was stated that such a framework needed to value disabled people's knowledge and experience and that it was important that action was taken as a result of what people said. It was also suggested that social care should be included in addition to health care and that the right to informed choice should be included. The framework would need to be well promoted and advertised to disabled people and DPOs.

"We are broadly supportive of any commitment to involve disabled people in improving health and social care services, particularly given the opportunities and challenges presented by the integration of these services. Capability Scotland is concerned that this framework may not include those we support. We call on the Scottish Government to ensure that systems and processes concerned with citizen participation support active involvement by disabled people with complex needs."

Third sector / equality organisation - Capability Scotland

"What disabled people want is coordinated action between policy and decision makers in co-production with them."

Third sector / equality organisation - Lothian Centre for Inclusive Living ( LCiL)

Critical comments

Those who were critical of this commitment did not believe that it would make a difference, In addition there were concerns that only those who "shout the loudest" would be listened to.

Other

One consultee expressed the opinion that listening to the Citizen's Voice should be an over-arching theme throughout the delivery plan, rather than a specific outcome.

Integration of Health and Social Care

Commitment 20. Routes to Inclusion - 'Engaging disabled people and their organisations'

20. Routes to Inclusion - 'Engaging disabled people and their organisations' is funded by the Scottish Government for engagement between disabled people, their organisations, Third Sector Interfaces and Integration Partnerships. It will show through evidence how disabled people can fully participate in locality and strategic planning groups. (2016)

Consultees were generally supportive of this commitment and a number of comments focused on the engagement process, as well as highlighting the need to make the process accessible and inclusive. The need to build on existing work and share learning was also emphasised. Table 26, below, shows the key themes identified.

Table 26: themes identified under commitment 20

Theme identified Number of comments relating to this theme
Generally supportive 8
Implementation 13
Engagement 9
Critical comments 4
Other 7

Implementation

In taking this commitment forward it was noted that it was important to build on existing work in local areas, and to share learning widely so as to avoid duplication of effort.

The importance of making the process accessible and inclusive was emphasised. Meetings should be physically accessible and inclusive communication should be used.

Some commented on funding arrangements. It was commented that the third sector would require adequate funding in order to facilitate and support disabled people's engagement. There was also a belief that longer term funding was required in order to build capacity and make the process meaningful.

"Capacity building for this activity requires significant and sustained resources - these are increasingly under threat due to on-going budget restrictions across the public sector."

Local government - Stirling Council

Engagement

A number of comments related to the importance of engaging with disabled people and DPOs, and it was emphasised that people with learning disabilities should be included in the process. The importance of early engagement was highlighted. One consultee suggested that it would be valuable to train and support disabled people to take part in locality and strategic planning groups. It was commented that the Scottish Government should work more closely with disability organisations.

"Capability Scotland would encourage the Scottish Government to broaden its approach to purposefully include working alongside disability organisations, such as those within the DAS alliance. These organisations provide considerable insight into the lived experiences of disabled people, their carers, as well as wider insight into the policy impacts and the role of the third and public sectors in removing barriers to independent living for disabled people."

Third sector / equality organisation - Capability Scotland

Critical comments

A number of critical comments were made including: not believing that the commitment would make a difference; not believing that disabled people would be adequately involved; not believing that it would lead to concrete action; and a belief that third sector interfaces are not effective, but add another layer of bureaucracy between the disabled person and the decision maker.

Other

Other comments focused on the need for a clear strategy and a consistent process. It was also noted that more needed to be done to encourage disabled people to participate. It was also noted that the process (so far) had been health-led (as opposed to equally integrating social care). Another commented that it was disappointing that this was the only commitment in the plan under the heading of "Integration of Health and Social Care".

Allied Health Professionals and Independent Living

Commitment 21. Allied Health Professionals and Independent Living - delivery plan

21. A two-year Active and Independent Living Improvement Programme will include an updated delivery plan for Allied Health Professionals ( AHPs). It aims to find new and innovative ways to help people with illness, disability or injury to lead healthy lives and stay in their own homes. Three improvement advisors will be appointed to ensure best practice is adopted throughout Scotland. The Scottish Government will hold engagement events - which will include the national conversation - throughout Scotland with NHS Health Board AHP Directors and the public, social care, justice, housing and the third sector. (2017-20)

The majority of consultees were supportive of this proposal, but there were others who were critical. Table 27, below, shows the key themes identified for commitment 21.

Table 27: themes identified under commitment 21

Theme identified Number of comments relating to this theme
Generally supportive 11
Critical comments 4
Dissatisfaction with current experiences with Allied Health Professionals ( AHPs) and geographical variation 4
Training 4
The role of Allied Health Professionals ( AHPs) 3
Inclusive communication 2
Engagement 1
Other 4

Generally supportive

A number of consultees were generally supportive of this commitment.

"Capability Scotland welcomes this commitment and is supportive of the shift in focus towards a self-supported management model for children and young people.... We hope the findings from our research on access to allied health provision for adults with cerebral palsy due for publication in the coming months will inform action on this commitment. We have found that 87% of adults have never been spoken to by a health professional about self-management. 71% of these adults reported that they would be interested in someone talking to them about this. Furthermore, almost 50% of AHP's reported that they have not received training in self-management, but that this is something they would like to happen."

Third sector / equality organisation - Capability Scotland

Critical comments

A range of views came from those who were critical of this commitment, including a preference for a "bottom-up" approach rather than a "top down" approach to care plans; doubt that anything would actually come from this commitment; and a concern that the appointment of advisors might divert funding away from AHP services.

"We would be concerned that the funding for advisors diverts funding from under-resourced Allied Health roles. There are currently issues around elderly people who can't get out of hospital due to a lack of support services."

Third sector / equality organisation - Saving Down syndrome

Dissatisfaction with current experiences with Allied Health Professionals ( AHPs) and geographical variation

Some consultees expressed their dissatisfaction with current experience of AHPs. It was felt that it is important to learn from people's negative experiences. Geographical variation of service provision was also mentioned, and it was noted that service provision is limited or non-existent in certain areas.

"The range of comments we received on the commitment suggested that disabled people may have very negative experiences of accessing the services of Allied Health Professionals ( AHPs), particularly OT provision and wheelchair and seating services. SDEF feels that these experiences need to be investigated in greater depth given the importance of these services to independent living. Lessons learnt from these experiences, particularly those that relate to the importance of successful communication with disabled people, should be incorporated into the delivery plan or codes of practice for AHPs. One respondent felt that the Delivery Plan might have less impact in some areas where service provision is limited or non-existent- 'there are no Learning Disability Nurses in Orkney - so this plan will have less impact there.'"

Third sector / equality organisation - Scottish Disability Equality Forum

Training

The importance of training was mentioned. It was suggested that AHPs should be given disability awareness training, and that they should learn from people's negative experiences. Another consultee noted the need for non-health professionals within organisations to receive basic healthcare training.

"We see this as a very important area in promoting independent living, and hope that integration of health and social care will result in better provision of healthcare training to non-healthcare staff in provider organisations."

Third sector / equality organisation - Sense Scotland

The role of Allied Health Professionals ( AHPs)

The role of AHPs was discussed by some consultees. It was mentioned that AHPs needed to be engaged with the self-management process. It was felt that there should be collaboration between professions and that the experience of AHPs should be drawn upon throughout the delivery programme.

Inclusive communication

The importance of inclusive communication, including the use of BSL was highlighted.

Engagement

Engagement with appropriate stakeholders was seen as important.

"Ensure that the improvement advisors are supported to engage with appropriate stakeholders. Partnership projects and approaches will support innovative and creative solutions."

Academic or Research Institute - PAMIS

Other

Other comments included a call for more information around this commitment and that the commitment would require adequate funding. Comments were also made relating to the importance of supporting child to adult transitions and providing people with enough specialist equipment to meet their daily needs.

NHS Disabled Graduates

Commitment 22. NHS - 2 year internship for disabled graduates in partnership with NHSScotland and Glasgow Centre for Inclusive Living Equality Academy

22. The Scottish Government will introduce a two-year internship for disabled graduates in partnership with the NHSScotland and Glasgow Centre for Inclusive Living Equality Academy. (2016-18)

Consultees were generally supportive of this commitment, but there were also calls to extend this opportunity to other workforces outside the NHS. Table 28, below, shows the key themes identified.

Table 28: themes identified under commitment 22

Theme identified Number of comments relating to this theme
Generally supportive 11
Broaden this opportunity out across other workforces 6
Other 4

Generally supportive

Consultees were broadly supportive of a two year internship for disabled graduates within the NHS.

"Leonard Cheshire Disability strongly supports paid internship schemes for disabled people. Although disabled young people have similar aspirations to their non-disabled peers, there is clear evidence that they often find it more difficult to make the transition from education into work with disabled people nearly four times more likely to be unemployed at age 26 than their non-disabled peers."

Third sector / equality organisation - Leonard Cheshire Disability

Broaden this opportunity out across other workforces

Despite being generally supportive of the commitment there were calls for it to go further, and for internships to be extended to other workforces too.

"We agree that these actions are appropriate but in addition to this there needs to be a focus that does more to increase employment of people with disabilities across Scotland's workforce."

Public Body - Social Work, Dundee City Council

Other

Other comments included a hope that this would be a longer term investment rather than a one-off programme. There was also a suggestion to introduce internships for non-graduate disabled people. It was also noted that such schemes had the potential not only to benefit the individual disabled graduate but also to raise awareness of disability more widely amongst those working with the intern.

"It is to be hoped that this will not just be a one-off scheme but the start of an on-going programme. Through Inclusion Scotland's experience of placing and supporting interns in political settings and with third sector organisations, it has been demonstrated that this can be a very effective means, not just of enhancing their employability but of promoting lasting positive change to attitudes and practices. We believe there is great scope to place interns in a range of settings, including in the field of health and social care, in order to increase understanding of the barriers disabled people face and how to remove them, and so that interacting with disabled people as fellow colleagues becomes a normal familiar, everyday occurrence."

Third sector / equality organisation - Inclusion Scotland

"Research shows that the level of highest qualification held by disabled young people is generally lower than that of young people without a disability. In addition to internships for disabled graduates, Leonard Cheshire Disability believes that an increase in internships and apprenticeships for disabled people who have qualifications lower than degree level would be beneficial in progressing the outcomes of this action plan."

Third sector / equality organisation - Leonard Cheshire Disability

Learning Disability Employment Programme

Commitment 23. NHS Scotland Learning Disability Employment Programme

23. The Scottish Government will take forward plans to develop a NHSScotland Learning Disability Employment Programme with tools and guidance to support Health Boards to increase the number of people with learning disabilities employed with them. (2016)

Consultees were generally supportive of this commitment, although it was felt that it could be extended to other workforces too. Once again the need for engagement was highlighted. Table 29, below, shows the key themes identified.

Table 29: themes identified under commitment 23

Theme identified Number of comments relating to this theme
Generally supportive 9
Broaden this opportunity out across other workforces 7
Engagement 6
Implementation 2
Critical comments 2
Other 1

Broaden this opportunity out across other workforces

Whilst increasing employment opportunities for those with learning disabilities in the NHS was seen as a positive step, there was a feeling that this should be extended to other workforces too.

"75% of online respondents were supportive of this commitment. It was felt that the programme could provide useful information for the employment of people with learning disabilities more generally: 'Could lessons learned and materials used be adapted for business more generally? It is not necessarily the case that people with learning disabilities would choose the NHS as an employer and I feel that more choice would be beneficial.' Respondents felt that such programmes should not be solely the domain of the NHS as many other organisations and businesses would benefit from this programme."

Third sector / equality organisation - Scottish Disability Equality Forum

Engagement

The importance of engagement with disabled people, specialist third sector organisations and employers was highlighted. It was stated that disabled people should be involved in the development of tools and guidance.

"All tools and guidance should be developed in full consultation and with the participation of those with disabilities."

Third sector / equality organisation - Saving Down syndrome

"We know from our experience of supporting disabled people into work that effective employment support for disabled people should include engagement with employers. The NHS is one of the biggest employers in Scotland and therefore we support the principle of the Scottish Government developing tools and guidance to help increase the number of disabled people in the NHS workforce."

Third sector / equality organisation - Leonard Cheshire Disability

Implementation

The necessity for inclusive communication and the need for sustained funding over a period of time were emphasised.

Critical comments

Scepticism was expressed that this commitment would have any impact, and another comment stated that a more holistic approach was required through legislation.

Disability Inclusion Promotional Campaign

Commitment 24. Disability Inclusion Promotional Campaign

24. We will raise awareness through a promotional campaign to NHSScotland Human Resource leads, service managers and staff on the range of organisations and expertise available to provide advice and good practice on disability inclusion. The Business Disability Forum will be an example of where awareness will be promoted. (2016)

There was some support for this commitment, although it was thought that it should be extended to other workforces. There was some criticism around this commitment, with a feeling that it was too narrow and that a promotional campaign within NHS Scotland was not necessarily the most appropriate approach. Table 30, below, shows the key themes.

Table 30: themes identified under commitment 24

Theme identified Number of comments relating to this theme
Generally supportive 7
Broaden this opportunity out across other workforces 5
Engagement 3
What should be included in the campaign 2
Inclusive communication 1
Critical comments 8

Broaden out to employers more widely

It was commented that this commitment should be extended to employers more widely, rather than just the NHS.

"This could include specific reference to local authorities and other public bodies as well as NHS Scotland."

Local government - East Ayrshire Council

Engagement

It was emphasised that it was important to engage with disabled people, specialist third sector organisations and employers.

What should be included in the campaign

A couple of comments referred to the types of disability which should be included as part of this awareness raising campaign. Autism was specifically mentioned, as was deafness. It was also emphasised that deafness inclusion needs to be dealt with in a different way from disability inclusion more generally.

"We welcome this. We feel it would not work if Deaf is part of disability inclusion. There is a real difference between disability inclusion and Deaf inclusion, mainly because of language, culture and communication issues. BDA Scotland is happy to work with NHS Scotland to provide advice and good practice on Deaf inclusion."

Third sector / equality organisation - British Deaf Association

Inclusive communication

The importance of inclusive communication was mentioned.

Critical comments

Those who were critical tended to criticise the narrowness of the campaign, and thought that a much wider campaign aimed at the general public was needed. Others believed that any sort of awareness-raising campaign was insufficient and that what was required were longer term strategies including education from nursery and school age as well as challenging media and social media perceptions of disability. It was also felt that much more detail was required about this commitment.

"Inclusion needs to be addressed at a community level as well as nationally. We need more activity than a single campaign to help people understand diversity and prevent negative stereotyping attitudes. Anti-stigma campaigns need to be more joined up rather than single focus e.g. See Me, Stick your labels etc. Media and social media portrayals of disability need addressed. Images of disability need to be challenged and also public education is required about 'invisible' disability."

Public Body - Social Work, Dundee City Council

Equality and Human Rights in NHSScotland

Commitment 25. Measure compliance of NHS Boards on embracing equality diversity and human rights in the NHS in Scotland

25. The Scottish Government will measure the compliance of NHS Boards on embracing equality diversity and human rights in the NHS in Scotland, linking it to Scotland's National Action Plan for Human Rights ( SNAP). (2016)

Whilst there was support for this commitment, it was felt that more details were required on how compliance would be measured and enforced. It was also mentioned that compliance around human rights needs to be wider than just the NHS. Table 31, below, shows the key themes identified.

Table 31: themes identified under commitment 25

Theme identified Number of comments relating to this theme
Generally supportive 8
More detail needed on how compliance will be measured and enforced 6
Compliance needs to be measured wider than just NHS 5
Dissatisfaction with the way NHS currently deals with equality and human rights 5
Inclusive communication 2
Engagement 1
Critical comments 2
Other 6

More detail needed on how compliance will be measured and enforced

Whilst there was support for this commitment, it was believed that more detail was required around how compliance would be measured and enforced. It was commented that it would be helpful if compliance and consideration of rights could be integrated into current inspection processes. One suggestion was that a wide range of evidence be gathered, including from disabled staff, patients and visitors. Some consultees asked about the processes involved and what sanctions, if any, there would be for non-compliance.

"It is vital to measure the compliance of human rights within the health care system. This should be promoted as an opportunity to reaffirm the commitment of the NHS in upholding patients human rights at all times. However, there is no detail within the action plan of how such compliance will be measured. We urge the Scottish Government to integrate rights compliance into current inspection and scrutiny processes for public services, as well as integrating considerations of rights into tendering processes."

Third sector / equality organisation - HIV Scotland & NAT (National AIDS Trust)

Compliance needs to be measured wider than just NHS

It was noted that compliance should be measured across all public bodies, not just the NHS. Social care in particular was mentioned, given the closer integration between health and social care, and the role that social care can play in the lives of disabled people.

"The 'where we want to be' statement refers to a joined up health and support system that has independent living at its core. As such given the establishment of Health and Social Care Partnerships and the obligations placed upon local authorities in relation to self-directed support to focus on Health Boards does not take account of the whole system of health and social care."

Local government - East Ayrshire Council

Dissatisfaction with the way NHS currently deals with equality and human rights

Some consultees expressed their dissatisfaction with the way that the NHS currently deals with human rights and some provided specific examples of experiences where they felt that their human rights had not been taken into account. These examples included: issues in relation to mental health legislation, diagnosis, and the length of time before receiving treatment; not receiving required specialist equipment; lack of access in hospital wards; lack of specialist staff in certain geographical areas; difficulty accessing services such as GP appointments; and not being listened to.

"The extent to which current NHS Scotland practice fails to enact disabled people's human rights and equality was starkly illustrated by many of the disabled people we engaged with. For example: "Very long waiting times for mental health treatment - not referred to specialists" (disabled asylum seeker/refugee woman)…"I use a tracking hoist and wheelchair. My hoist gets more attention than I do!" (young disabled person at Glasgow event);"

Third sector / equality organisation - Inclusion Scotland

Inclusive communication

The need for inclusive communication, including BSL was highlighted.

Engagement

Engagement with expert stakeholders was mentioned.

Critical comments

Those who were critical of this commitment noted that the NHS should already be complying with human rights. There was also scepticism around whether or not this commitment would actually do anything to stop discrimination.

Other

Concerns were expressed about the process of pre-birth screening for foetal abnormalities, and the conflict between this and human rights, including the rights of the unborn child. A comment was also made about monitoring the recommendations of the report on Human Rights in Mental Health Care. Another comment expressed the desire for disabled people to enjoy the same rights as non-disabled people.

"We are concerned that present attitudes and practices around prenatal screening can foster the assumption that those with Down syndrome and other conditions have no inherent worth (or not enough to be worth protecting by the State). DS organisations, families and people with DS can testify to how worthwhile and precious their lives are. Human rights are made arbitrary by treating those with specific disabilities as unworthy of life. The purpose of prenatal screening is to do just this."

Third sector / equality organisation - Society for the Protection of Unborn Children ( SPUC) Scotland

"We would also wish to see action to implement and monitor the recommendations of the report on Human Rights in Mental Health Care, produced by MWC and the Scottish Human Rights Commission in implementation of Commitment 5 of the Government's Mental Health Strategy for 2012-15."

Public Body - Mental Welfare Commission for Scotland

"We would want to see people's rights to the full range of interventions that non-disabled people are offered being acted on, and no assumptions being made about a person's ability to comply with post-op therapies without first discussing these with the person and / or their paid / unpaid carers."

Third sector / equality organisation - Sense Scotland

Children's Rights and Wellbeing

Commitment 26. Child Rights and Wellbeing Impact Assessment ( CRWIA) for all policy development affecting children

26. The Children and Young People (Scotland) Act 2014 requires Scottish Ministers to consider what they are doing to comply with the UN Convention on the Rights of the Child ( UNCRC). This is a significant milestone for children's rights in Scotland. From June 2015 the Scottish Government is using the Child Rights and Wellbeing Impact Assessment ( CRWIA) in the development of all policies and services that affect children. CRWIA supports improved participation and engagement with children and young people including those who are disabled, so that their views and experiences can inform policies.

Consultees were generally supportive of this commitment. The importance of engaging with disabled children and young people, their families and carers and organisations was emphasised. Comments were made about the practical implications of taking this commitment forward and there were suggestions that Child Rights and Wellbeing Impact Assessments ( CRWIAs) should be conducted more widely as many policies will impact on children. Table 32, below, shows the key themes identified.

Table 32: themes identified under commitment 26

Theme identified Number of comments relating to this theme
Generally supportive 12
Engagement 7
Implementation 6
Needs widening out, lots of policies will have impacts on children 4
Other 4

Engagement

Engagement with disabled and non-disabled young people, their families and carers as well as a wide range of third sector organisations and professionals was seen as crucial.

"It is important that children's', both from disabled and non-disabled, views and suggestions are actually listened to and more importantly included within the policies and services that affect them."

Individual

"Please consider family carer involvement in order to support children with PMLD [profound multiple learning disabilities]… No one profession or group has the answers for these children. It requires a collective approach, valuing all contributions."

Academic or Research Institute - PAMIS

"We welcome this. However, we are still unclear how this will effectively works for Deaf children and young people. We ask for Deaf professionals to be part of this process, ensuring that Deaf children and young people have their views and experiences properly heard in order to inform policies."

Third sector / equality organisation - British Deaf Association

Implementation

A number of comments related to the practicalities of taking this commitment forward and carrying out CRWIAs. There were calls for further information, including the skill set of the staff carrying out CRWIAs, how children and stakeholders would be involved, and how it would link with Getting It Right for Every Child ( GIRFEC), and Equality Impact Assessments ( EQIAs). The need for inclusive communication and responding to speech and communication needs was emphasised, as was a suggestion for regularly reviewing the impact of carrying out CRWIAs. The necessity of developing practical guidance on conducting CRWIAs was also mentioned, with one organisation, Capability Scotland, referring to work it had undertaken on "Empowered and Effective Decision Making by Disabled Children and Young People", and suggesting that findings from that could be incorporated into the development of any such guidance.

"It is positive that the framework for completing CRWIAs includes questions around disabled children and requires consideration of the impact of the policy on groups of children. We would welcome further information on how it will be assured that those completing CRWIAs have the appropriate skills and knowledge to take full account of the needs of disabled children in their assessments. Consultation and liaison with third sector organisations, parents/carers and disabled children and young people themselves would be important here."

Third sector / equality organisation - National Deaf Children's Society

Other

It was suggested that commitments relating to children's rights and wellbeing should form a separate outcome - Outcome 5.

Commitment 27. Fund for projects to support disabled children and their families

27. Funding for projects to support disabled children and their families - applications are being made as part of a new children and families early intervention fund for 2017-20. The Disabled Children and Young People Advisory Group ( DCYPAG) will continue to advise Ministers on policies relating to disabled children and their families, with a particular focus on the implementation of the Children and Young People (Scotland) Act 2014.

Consultees were generally supportive of this commitment, although it was thought that more information was required. A number of comments concerned the practicalities of implementing this fund. Table 33, below, shows the key themes identified.

Table 33: themes identified under commitment 27

Theme identified Number of comments relating to this theme
Generally supportive 8
Implementation 8
More information required about this commitment and how it will work 6
Engagement 3
Critical comments 2
Other 4

Implementation

Comments were received around how this fund could be implemented. Some consultees commented that the short term nature of the funding might lead to sustainability issues. There were calls to monitor and evaluate the fund, and it was felt that successful projects should be duplicated. Partnership working across sectors was also mentioned. The need to take into account speech, language and communication difficulties was highlighted.

"We would hope that such funds cover sufficient periods to enable sound planning and real long-term evaluation of impacts to take place."

Third sector / equality organisation - Sense Scotland

"It would be useful to coordinate funding so that partnership working across sectors is maximized. More involvement of a range of partners will support broader creativity and innovation and better use of resources."

Academic or Research Institute - PAMIS

More information required about this commitment and how it will work

It was thought that more information about this commitment was required, including eligibility criteria and how families could find out about and apply for funding. It was also thought that there was a lack of clarity about its aims and how it would benefit disabled children. Some confusion was expressed about the reference to the Advisory Group in the commitment and how this related to the fund.

"Again, without the detail on the kinds of projects that commitment 27 might support, it was difficult to consult disabled children and young people and their families on this commitment. Who is this funding open to? What are its aims, and how will it benefit disabled children and young people?... We are also unsure how the second part of this commitment, details about the Disabled Children and Young People's Advisory Group ( DCYPAG), relates to the top line. We suggest that this is replaced within its own commitment."

Third sector / equality organisation - Inclusion Scotland

Engagement

The necessity of engaging with disabled children and young people and key stakeholders was emphasised. One consultee had consulted with disabled people, including children and young people, prior to responding to the consultation, and had included questions in their survey about what projects such funding could be used for. It was suggested that information such as this was taken on board when developing the fund.

"Inclusion Scotland has consulted disabled young people about what they need in terms of additional support. We also included some ideas in our survey for disabled people on the [Disability Delivery Plan] DDP of what such funding might be used for… In a question in the survey we asked disabled people which three ideas for projects are more important to them. The top three ideas rated were: availability of local respite services; information about advocacy and carer support for parents; have more children involved in projects to inform the development of law and improve available services."

Third sector / equality organisation - Inclusion Scotland

Critical comments

Two objections were expressed. The first was that a distinction should not be made between disabled and non-disabled people, and the second was that support should not come from special short-term funded projects, but should be delivered through the local community.

Other

Comments included wanting the Advisory Group to extend its remit beyond the Children and Young People (Scotland) Act, and current dissatisfaction with the services in place for disabled children and their families.

"Capability Scotland would encourage the Disabled Children and Young People Advisory Group ( DCYPAG) to expand its focus beyond the implementation of the Children and Young People (Scotland) Act 2014 to ensure disabled children and young people's empowered and effective engagement to the group, developing national policy, services and legislation."

Third sector / equality organisation - Capability Scotland

" LCiL would be very interested to hear more about this initiative. Currently funded by Scottish Government to work with parents of disabled children we are hearing harrowing stories of parents let down by the system, without support, struggling to keep their families together and left with no information about their rights or entitlements."

Third sector / equality organisation - Lothian Centre for Inclusive Living ( LCiL)

Commitment 28. Information Hub

28. Information Hub - parents and carers of disabled children and young people often struggle to find the information that they need about their rights, support services, health and benefits. The Scottish Government will start to develop better information by finding out what the information needs of disabled children and their families are and presenting proposals for implementation 2016 onwards. (2016 ongoing)

Consultees were generally supportive of this commitment. The importance of providing accessible information for disabled children and young people and their families, and the importance of having information in one place were emphasised by consultees. The need for engagement and inclusive communication were also highlighted. Table 34, below, shows the key themes identified.

Table 34: themes identified under commitment 28

Theme identified Number of comments relating to this theme
Generally supportive 8
Inclusive communication 8
Engagement 7
Local element 3
Scope of hub 3
More details required 2

Generally supportive

Consultees were generally supportive of this commitment. It was thought that there was a definite need for this, as parents and carers can struggle to find the information they need. Consultees highlighted the importance for families of disabled children and young people to have easy access to appropriate information. The establishment of a hub that would act as a single source of information was also welcomed. It was commented that information provided should cover the widest possible age range, from pre-birth (where conditions are diagnosed pre-birth) through to childhood to adult transitions.

"Capability Scotland welcomes this commitment. Increased visibility of, and signposting to, information and resources already available should lead to more informed families… Capability Scotland was a partner in a research project with the 'Centre for Research on Families and Relationships' and 'Parenting Across Scotland'. "About families: gathering evidence, informing action" found that a lack of suitable information for families of disabled children impacted greatly on their use of services and their experience of parenting. For example, a recent evaluation of play@home resources designed to support parents of children under 5 across Scotland to play with their children at home found low use of the resources amongst 'vulnerable' families and concluded that the information needs of parents of disabled children were not met by play@home."

Third sector / equality organisation - Capability Scotland

"I agree that parents and carers of disabled children and young people often struggle to find the information that they need about their rights, support services, health and benefits. My participation and education team recently met with parents of very young disabled children, to talk about work with the 0-2s that we will shortly be commencing. This provided valuable information about access to services and barriers faced by these parents. 'Sometimes it is really difficult to be the parent of a new-born baby with disabilities. It might be completely new to you, and you don't know who to ask, or where to go, for advice and support. It can leave you feeling lonely and isolated.'… 'When I know my child isn't getting the help and support they really need to develop. I feel helpless and useless. I travel miles to get care and services in a different local authority that are actually available close to me but he doesn't qualify for them. ( i.e. hydrotherapy, physiotherapy)' When asked 'What isn't available that should be? - the answers included…. 'Knowing what support groups that are in the local area specific to the needs of you and your baby'…'Information about what is already out there to be available to us'"

Public Body - Children and Young People's Commissioner

Inclusive communication

The importance of inclusive communication was commented upon. It was stated that information should be available in a wide range of formats and languages in order to be accessible. Information should be available off-line as well as on-line, be available in BSL, and also be aimed at children and young people themselves in a format which is accessible to them. It was also emphasised that how information was communicated, and the support that went with it, was as important as the information being communicated.

"The information hub should make information available in the various accessible formats (including for those who need offline information) and in different languages. There must also be an information hub / area within this resource that is aimed at disabled children and young people themselves, for different ages and stages, and with different topics covered, e.g. rights (in the UNCRPD and the UNCRC), support and advice on learning, work, independent living, money, relationships, social life, sports, culture, environment, etc. Organisations working with disabled children and young would welcome opportunities for them to co-produce information, in the form of blogs, vines, etc."

Third sector / equality organisation - Inclusion Scotland

"This is welcomed by the majority of respondents who stressed the needs for accessible information in alternative formats in on and off-line form. One respondent felt that at present parents of disabled children find information 'so hard to obtain and it is so scattered.'"

Third sector / equality organisation - Scottish Disability Equality Forum

"Let's work together across sector to contribute to one hub. It is often not the information, it is the support to understand it and implement/use it that is required."

Academic or Research Institute - PAMIS

Engagement

Engagement was a prominent theme. It was regarded as vital that disabled children and young people and their families and carers were consulted about what they required and that this should form the basis of developing the information hub. Partnership working across sectors and engaging with third sector organisations in order to learn about information needs and how to fill them was also seen as important.

"Gaps in information provision should be identified through direct engagement with families of a disabled child allowing the development of accessible resources and information to better meet their needs."

Third sector / equality organisation - Capability Scotland

Local element

Some consultees hoped that the information hub would have a "local dimension" and would provide local information and links to local websites. However another consultee was concerned about local authority delivery of national policies such as this, due to a "disconnect" between Scottish Government and local authorities.

Scope of hub

There were some comments around the scope of the hub and the information that it would provide. It was suggested that the scope should be extended to include information for all disabled people, and those who might be vulnerable to specific types of culturally-based violence or abuse. It was also stated that it would be helpful if the hub provided information related to all the four outcomes, rather than being specifically focused around rights and wellbeing.

"We welcome the commitment to developing improved information but this must be extended to include information for all disabled people. For disabled people to fully realise and access their rights, they must have accessible information and guidance."

Third sector / equality organisation - HIV Scotland & NAT (National AIDS Trust)

"We believe that some attention should be given as to whether such hub could actually gather information about the four outcomes and not only rights and wellbeing needs."

Third sector / equality organisation - Downs Syndrome Scotland

More details required

There was a belief that more information should be provided, in particular around how the Scottish Government intended to find out what the information needs of families with disabled children are.

"The commitment is an important one, but it is lacking in detail. How does the government intend to develop better information and find out the information needs of disabled children and their families?"

Public Body - Children and Young People's Commissioner

Commitment 29. Transitions Test of Change Project

29. Transitions Test of Change Project - a small-scale test of change will be developed to evaluate the benefit of extending the GIRFEC principles, including the 'named person' service into adult services. This will particularly help with transitions from child to adult services. (2016 ongoing)

Consultees were generally supportive of this commitment. A number of comments highlighted how difficult the transition from child to adult services can be. Comments were also made around the principle of Getting It Right for Every Child ( GIRFEC). Table 35, below, shows the main themes to emerge.

Table 35: themes identified under commitment 29

Theme identified Number of comments relating to this theme
Generally supportive 11
Transitions 13
Getting It Right for Every Child ( GIRFEC) 8
Engagement 1
Other 3

Generally supportive

Consultees were generally supportive of this commitment.

"Inclusion Scotland also supports the Transitions Test of Change Project. Along with other organisations, we argued that provision for a named person and GIRFEC in the Children and Young People's (Scotland) Bill should be extended to the age of 25 when we responded to consultations on it."

Third sector / equality organisation - Inclusion Scotland

Transitions

It was noted that the transition from child to adult services can be a very difficult time, and that some children have negative experiences, losing the support that they had as a child and it not being replaced by adequate support as an adult. It was noted that transitions may be particularly hard for certain groups, such as those with profound multiple learning disabilities ( PMLD), or those who have been looked after in the care system. There were suggestions for flexibility around the age at which people transition from child to adult services. It was also noted that transition planning needs to start earlier and there needs to be good inter-agency co-operation

"Disabled young people had been telling us in strong terms that support they had received at school age had simply vanished when they left school or college. As a participant at our Dundee event commented, "there can be a big gap between child and adult services". A young person at our Glasgow event said: "I got more help when I was at school and got help more quickly. Now I'm in a desert land of service, benefits and other things I don't have. I don't know what I need or what I can get to help me live the life I want. I don't even know what that life could be. Right now it's not much". This has had a hugely negative effect on young disabled people's ability to live independently, to maintain friendships or to establish new relationships, to access places where other young people go."

Third sector / equality organisation - Inclusion Scotland

"Should the appropriate age for transition into some adult services be reconsidered? Our observation is that people with Learning Disability, are later developers and may benefit from staying in the same system for longer than normal"

Third sector / equality organisation - Saving Down syndrome

"There are also major issues for children transitioning to adulthood (*and not just with regard to health). Disabled young people continue to experience unsatisfactory transitions from children's to adult services or to independent living. In the Commissioners' report I highlighted particular Scottish issues with regard to health e.g. children are waiting too long for appropriate packages of care to be put into place; those whose life expectancy is expanding due to medical advances are finding that there is a lack of service provision for them… These issues are often exacerbated for those in the looked after system. IRISS refers to a lack of planning, inadequate information and consultation with young people, and restricted housing and employment options and poor support after leaving care are cited (Rabiee et al, 2001). The point is also made that services for disabled care leavers are not always co-ordinated and planned with mainstream leaving care services. Key to this is better interagency planning to ensure continuity and improve monitoring of looked after disabled children as they reach their teenage years so that planning starts and continues early."

Public Body - Children and Young People's Commissioner

Getting It Right for Every Child ( GIRFEC)

Some consultees commented on the Getting It Right for Every Child ( GIRFEC) approach to services. Some were very supportive of it and thought that it should be extended into adult services, as it linked well with the "personalisation" agenda. It was also commented that a "named person" might be beneficial for older people who are discharged from hospital back into the community. It was stated that the GIRFEC approach would require more investment and one consultee wanted assurances that having a named person would actually result in access to the required support. Others were more critical of GIRFEC, including an expression of dissatisfaction with how it was implemented in practice and concerns that the provision of a named person interfered with the role of the parent of disabled children.

"The personalization agenda is based on the same principles as GIRFEC. 'Named person' discussion would be beneficial especially in relation to Health and Social Care Integration and developing the role of a key or lead worker."

Local government - Perth and Kinross Council

"As an organisation, we have already adopted the GIRFEC principles across planning for all support we provide - whether to children or adults. We make particular use of the My World triangle, which only required minimal adaptation of language to make it suit all ages. Continuity of the principles across all ages recognises that support should be person-centred, and not be based on assumptions linked to age."

Third sector / equality organisation - Sense Scotland

Engagement

One consultee in particular was clear that children and young people need to be consulted and listened to during the transition process.

"Children and young people also report that their voices are not being listened to, nor are they being asked for their views. The transition process in particular is often not explained to them in an accessible way and the jump to adult services is often too steep… The main focus of transition planning should be listening to the wishes and feelings of disabled young people and seeking to fulfil their aspirations."

Public Body - Children and Young People's Commissioner

Other

Other comments included: the need for on-going monitoring and evaluation of this commitment, and a suggestion that this commitment should be reworded to make it more neutral as the current wording implies that extending GIRFEC will be beneficial, which has not yet been shown to be the case.

"The Transition Test of Change Project is to be welcomed as the transition of an individual from children's to adult services can be challenging for a range of reasons. However the wording of the proposal ( i.e. This will particularly help with transitions from child to adult services) implies that the outcome of the evaluation of the benefits of extending GIRFEC principles including named person has been assumed as being affirmative. The paragraph should be reworded so that it does not pre-empt the outcome."

Local government - East Ayrshire Council

Commitment 30. Child Internet Safety stakeholder group

30. Child Internet Safety Stakeholder Group - will consider disabled children's perspectives (2016 and ongoing)

Consultees who responded to this question, were generally supportive of this commitment. The need for engagement was highlighted, as was the need to consider specific groups, such as those with communication support needs, or vulnerable adults. It was felt that more detail was required around this commitment. Table 36, below, shows the key themes identified.

Table 36: themes identified under commitment 30

Theme identified Number of comments relating to this theme
Generally supportive 8
Engagement 4
Outcome needs to be more detailed 3
Consider the specific needs of children and young people with communication support needs 3
Extend to Vulnerable adults 2
Other 6

Engagement

It was emphasised that it was essential to engage with disabled children and young people about this, including hearing the views of those with communication support needs, learning disabilities or social and behavioural problems.

"Inclusion Scotland supports the existence of this group and views its commitment to consider the perspectives of disabled children as not only desirable but essential, in view of the particular issues internet safety can pose for them, as well as the opportunities it can provide. In order to properly pursue the interests of children, efforts must be made to incorporate the perspectives of all children across all protected characteristic groups, including disability."

Third sector / equality organisation - Inclusion Scotland

Outcome needs to be more detailed

There were calls for more information and detail around this commitment.

"We regret that, once again, the lack of detail contained in this commitment means that neither we nor the disabled people we have consulted are able to judge its adequacy. We would like to see more information about how disabled children and young people are informing the work of the Group. For example, what methods will be used to consult them and how will the resultant evidence be used?"

Third sector / equality organisation - Inclusion Scotland

Consider the specific needs of children and young people with communication support needs

It was believed that specific consideration should be given to children and young people with communication support needs, as they were felt to be at greater risk of harm than other disabled people. It was noted in particular that they might have difficulty in understanding what had happened, recognising harmful behaviour and in reporting it.

Extend to Vulnerable adults

It was also thought that this commitment should be extended to vulnerable adults.

Other

Other comments noted that whilst the internet and social media can have benefits for disabled young people, it can also be a place where they may experience hate crime. It was important, therefore, that they know how to stay safe and report negative experiences. Given the positive role that the internet can play, it was suggested that more needed to be done to increase access to the internet, including training and information for parents as well as children. It was also suggested that guidance should be provided for professionals (for example around becoming a Facebook friend in order to check who might have befriended a vulnerable person).

"Our consultation with disabled children and young people suggests that, as for most young people, the internet/social media can be a valuable space for connecting with others and getting information. This access can be of particular value as a route to social inclusion to disabled children and young people with certain impairments. However this is also a space in which disabled children experience hate crime. This is of course a threat to their safety, no less so because the anonymity afforded by the internet can embolden attackers. Disabled children therefore need safe spaces online; and - alongside their peers, parents and educators - to understand the internet environment, how to stay safe, and how to report negative experiences."

Third sector / equality organisation - Inclusion Scotland

Mental Health Legislation

Commitment 31. Review of inclusion of people with learning disabilities or autistic spectrum disorders under the Mental Health (Care and Treatment) (Scotland) Act 2003.

31. Learning disabilities and autism spectrum disorders - the Scottish Government will review the inclusion of people with learning disabilities or autistic spectrum disorders under the Mental Health (Care and Treatment) (Scotland) Act 2003.

There was a lot of support for this commitment. Some consultees pointed out the inappropriateness of including those with learning disabilities or autism under the Act. There was a belief that the scope of the review need to be extended. Table 37, below, shows the key themes.

Table 37: themes identified under commitment 31

Theme identified Number of comments relating to this theme
Generally supportive 16
Inappropriateness of including those with learning disabilities or autism under the Act 7
Scope of the review 5
Engagement 1
Inclusive communication 1
Other 1

Generally supportive

There was a lot of support for this commitment. Support was linked to the belief that it was inappropriate to include those with learning disabilities and autism under the Act.

"This is most welcomed and brings great hope to the many people with learning difficulties who feel at the mercy of the current legislation."

Third sector / equality organisation - Lothian Centre for Inclusive Living ( LCiL)

Inappropriateness of including those with learning disabilities or autism under the Act

A number of consultees pointed out the inappropriateness of including those with learning disabilities or autism under the Act, stressing that a learning disability or autism should not in itself be a reason to be covered by the Act, and that people with learning disabilities and autism need to be supported to exercise their rights rather than have those rights curtailed. In addition the inappropriateness of mental health provision for those with learning disabilities or autism was highlighted.

"Inclusion Scotland believes that including those with learning disabilities or ASD as having mental disorders is discriminatory and inconsistent with Article 12 if the UNCRPD."

Third sector / equality organisation - Inclusion Scotland

"People with learning disabilities or with Autism Spectrum Disorders should be supported with their mental health issues as others are. Learning Disability and ASD should not in themselves be seen as a reason to be included in the Act."

Third sector / equality organisation - Sense Scotland

Scope of the review

Some respondents commented on the scope of the review and suggested that it should be widened out to review other legislation as well. Suggestions included: looking at the provision of support, so that those with mental disabilities can exercise their capacity on an equal basis with others; considering merging mental health and incapacity legislation; a wider review of legislation around those with learning disabilities; and that the review should also include an analysis of non-consensual treatment.

"While the commitment to review the inclusion of people with learning disabilities under the 2003 Act is welcome, it is suggested that a wholesale review of the legislation is now required… In particular, the UNCRPD requires that states provide people with disabilities with access to the support that they may require in order that they are able to exercise their legal capacity on an equal basis with others… It is important that Scotland begins to actively engage with this challenge by considering how laws relating to people with mental disabilities can offer greater opportunities for access to support."

Academic or Research Institute - Centre for Mental Health and Incapacity Law, Rights and Policy - Edinburgh Napier University

"The SG also requires to look at whether the time has come to merge the Mental Health and Incapacity regimes as is currently occurring in Northern Ireland, as this matter may simply become a piecemeal reform."

Individual

"This review will only be relevant in the context of a delivery plan for the UNCRPD if it incorporates a thorough analysis of the implications of the Convention for non-consensual treatment."

Public Body - Mental Welfare Commission for Scotland

Engagement

It was noted that this was a sensitive issues and that engagement would be required with those with disabilities and their families, as well as the organisations which support them.

"This is a sensitive issue for disabled people and their families as well as for the organisations supporting them. We therefore hope that the Scottish Government will ensure that all relevant parties are being informed and consulted on the review in due course."

Public Body - Mental Welfare Commission for Scotland

Inclusive communication

The need for the availability of specialist support in BSL for D/deaf people was emphasised.

Adults with Incapacity Act

Commitment 32. Consult on Scottish Law Commission's review of the Adults with Incapacity Act and thereafter carry out a scoping exercise in relation to a wider review of the Adults with Incapacity legislation.

32. The Scottish Government will consult on the Scottish Law Commissions review of the Adults with Incapacity Act on its compliance with Article 5 of the European Commission on Human Rights with European Convention on Human Rights, specifically in relation to Deprivation of Liberty. A scoping exercise will follow in relation to a wider review of the Adults with Incapacity legislation.

Most consultees were supportive of this commitment. There were also comments that the scope of the review should be extended. It was also believed that the interaction between the Act and Human Rights legislation needed to be examined. Table 38, below, shows the key themes.

Table 38: themes identified under commitment 32

Theme identified Number of comments relating to this theme
Generally supportive 15
How the review is conducted/wider review required 9
Interaction with Human Rights Legislation 8
Uncertainty/lack of understanding around this commitment 2
Engagement 2
Other 5

How the review is conducted/wider review required

As with commitment 31 relating to the Mental Health (Care and Treatment) (Scotland) Act 2003, it was believed that the review of the Adults with Incapacity Act should be extended, and that it made sense for the two reviews to be done in conjunction with one another. It was also stated that there would be a need to scrutinise any changes to the legislation in case there were any unintended negative consequences.

"It seems reasonable to consult on the Scottish Law Commission's review and consider a wider review. We would welcome a modern piece of legislation based upon human rights, to take account of a number of significant changes such as Self-directed Support legislation."

Public Body - Social Work, Dundee City Council

"We also believe that mental health law and incapacity law should be looked at together, and would argue for a clear timetabled commitment to a comprehensive review of the legislative framework for non-consensual interventions in the lives of people with mental health problems, learning disabilities or dementia."

Public Body - Mental Welfare Commission for Scotland

"Any proposed change to the legislation would need to be thoroughly scrutinized to ensure there will be no unintended consequences that may further disadvantage vulnerable people e.g. when Act was first introduced it resulted in some people being delayed in inappropriate, acute hospital wards."

Local government - Perth and Kinross Council

Interaction with Human Rights Legislation

It was stated that examination of how the Act interacted with Human Rights legislation was required, particularly in relation to the deprivation of liberty, and a potential conflict between human rights as set out in the UNCRPD (Article 12) and the European Convention on Human Rights (Article 5).

"A comprehensive review of the Adults with Incapacity Act is required in order to, amongst other things, assess its compliance with Article 12 and the UNCRPD generally. For example, Article 14 UNCRPD provides that: 'States Parties shall ensure that persons with disabilities, on an equal basis with others…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.' This has been reinforced by the Committee on the Rights of Persons with Disabilities in guidelines issued on Article 14 in September 2015. There is a potential conflict between this provision and Article 5 of the European Convention on Human Rights which permits deprivation of liberty on the basis that an individual is of 'unsound mind'. Consideration of such issues will require extensive consideration."

Academic or Research Institute - Centre for Mental Health and Incapacity Law, Rights and Policy - Edinburgh Napier University

Uncertainty/lack of understanding around this commitment

Some consultees did not fully understand the implications of this commitment, or what it meant in relation to deprivation of liberty.

Engagement

The necessity of engaging with disabled people about this commitment was highlighted.

"Inclusion Scotland would like to see disabled people's input to framing that review, as well as support for subsequently engaging disabled people to gather input about its contents."

Third sector / equality organisation - Inclusion Scotland

Other

A range of other comments were received. These included: providing people with communication support needs with adequate support (they may be at risk of being deemed "incapable", if they are unable to communicate their decisions). It was also noted that it was important to treat with dignity and respect people who were being deprived of their liberty. Another consultee stated that making a distinction between physical disorders and mental disorders was outdated and potentially discriminating to those with mental disorders.

"Guidance related to the Act stresses someone should not be deemed incapable on grounds of communication support needs if those difficulties can be overcome the right support."

Academic or Research Institute - Royal College of Speech and Language Therapists

"A number of respondents stressed that where deprivation of liberty was thought to be in the best interests of a disabled person i.e. for their personal safety, that they should be treated with dignity and respect."

Third sector / equality organisation - Scottish Disability Equality Forum

"The current distinction in law between mental disorders and physical disorders is outdated, not supported by medical evidence, and can be viewed as discriminatory for people with mental disorders."

Third sector / equality organisation - Scottish Learning Disabilities Observatory

Commitment 33. Review of policies on guardianship and consider circumstances in which supported decision making can be promoted

33. The Scottish Government will review policies on guardianship and consider circumstances in which supported decision making can be promoted, in line with principles of article 12 of the UNCRPD.

Consultees who responded to this question were supportive of this commitment, noting current issues around the guardianship process, and raising concerns about the increase in guardianship applications being made and how this linked with Self Directed Support ( SDS). The role of supported decision making and advocacy were highlighted. Table 39, below, shows the key themes emerging.

Table 39: themes identified under commitment 33

Theme identified Number of comments relating to this theme
Generally supportive 12
Supported decision making 10
Increase in new guardianship applications and links between Self Directed Support ( SDS) and guardianship 7
Issues raised around guardianship 5
Advocacy 3
Other 6

Supported decision making

There were a number of comments about supported decision making, as opposed to substitute decision making. In substitute decision making legal capacity is taken away from the individual and a substitute decision maker makes decisions based on what they deem to be in the individual's best interests, which may go against the individual's own will and preferences. In supported decision making the individual is supported to exercise their legal capacity.

Consultees were generally in favour of promoting supported decision making. Reference was made to a general comment by the UN Committee on the Rights of Persons with Disabilities in relation to Article 12, which spoke of the state's obligation to provide disabled people with access to support in the exercise of their legal capacity, and that it was not sufficient to develop supported decision making in parallel with substitute decision making.

One consultee, however, did comment on the need for substituted decision making, as a safe-guard for the most vulnerable.

"We believe that where a person's capacity is severely diminished, without some form of substitute decision making may leave an individual at significant risk of harm and/or exploitation… It is therefore imperative that the Scottish Government set out how it can meet its obligations under the UNCRPD, whilst providing a level of care and support to individuals who may be at risk as a result of their disability or incapacity."

Third sector / equality organisation - Alzheimer Scotland

Increase in new guardianship applications and links between Self Directed Support ( SDS) and guardianship

Some consultees noted that there had been a sharp increase in guardianship applications in recent years, quoting statistics from the Mental Welfare Commission. It was suggested that the increase in guardianship applications might have arisen as an unintended consequence of the introduction of Self Directed Support ( SDS), and that this increase was actually in conflict with the concepts of control and choice which are central to SDS.

"The Mental Welfare Commission reports an increase of 84% in new guardianship applications granted since 2009/10 ( MWC AWI Act Monitoring 2014/15). Statistics for 2014/15 show that for the first time since monitoring began applications for adults with learning disabilities was greater than for those with dementia. Furthermore there is significant variation in the rates of application and approval across local authorities. It is proposed that the implementation of Self-Directed Support may have had the unintended consequence of contributing to a sharp increase in applications for guardianship orders."

Third sector / equality organisation - Scottish Learning Disabilities Observatory

"There is perhaps some conflict between this increase in guardianship and the key aspects of choice and control enshrined in Self-directed support."

Third sector / equality organisation - Sense Scotland

Issues raised around guardianship

Some consultees raised concerns around guardianship, and commented that it should be a more transparent process and operate more systematically. It was believed that indefinite guardianship should be considered as part of the review. A comment was also made about the role of guardianship in the case of disabled children as they become adults, yet restrictions remain in place.

"We welcome this, but would like to see much clearer detail of how such a review will be conducted. We argue in Q31 and Q32 for a comprehensive review of the law, but there is also much that needs to be done in relation to the operation of the system. A specific example is the practice of the sheriff courts in guardianship cases, which is highly variable."

Public Body - Mental Welfare Commission for Scotland

"It would be beneficial for this system to be more transparent and clear and to ensure that the families who need to go through this process are fully supported."

Individual

"The Mental Welfare Commission raised concerns over guardians having indefinite decision making powers, particularly when a child grows in to an adult, yet restrictions still remain in place. There is a tendency for guardians to not allow any risk-taking (people can't go on dates, have someone in their room, watch pornography) which is based more on disapproval than anything else."

Public Body - NHS Forth Valley (Women and Children's Sexual Health)

Advocacy

The importance of advocacy was highlighted. It was noted that:

"The policies on Guardianship already promote advocacy as a means of supporting decision making by those people who are unable to protect themselves."

Representative body for professionals - Social Work Scotland Ltd

It was also believed, however, that more could be done to develop advocacy provision.

"Central to this is the development of advocacy and support services. The 2003 Act established a right to independent advocacy, but provision varies across Scotland. Where it is available, it is often only when a condition has reached a critical stage. Early independent or peer advocacy support in planning and considering treatment options can help prevent a deterioration of mental health, and thus avoid the need for critical intervention, including compulsory treatment. This was considered crucially important and also lacking by all of the different groups of disabled people we consulted. Independent Advocacy services can also support people with learning disabilities and cognitive impairments to make informed life choices, increasing control over their own lives and supporting independent living. The increasing use of guardianships removes choice and control from disabled people, and is therefore not compatible with Article 12."

Third sector / equality organisation - Inclusion Scotland

Other

Other comments included: a request for more detail around how a review would be conducted; the need to look at how this interacts with human rights, noting that there are geographical disparities in relation to guardianship; and noting the need for cross-policy working, highlighting the interaction between guardianship and SDS.

Care and Justice: Children's Hearings

Commitment 34. An integrated children's rights and equalities impact assessment for the Scottish Children's Reporter Administration

34. An integrated children's rights and equalities impact assessment for the Scottish Children's Reporter Administration will bring more of a rights focus to key decisions and will be rolled out to national and local decision makers within the hearings system. (2016)

Relatively few comments were received relating to this commitment, the majority of which were supportive. Suggestions were made about what should be taken into consideration when carrying out the assessment. Table 40, below, shows the key themes.

Table 40: themes identified under commitment 34

Theme identified Number of comments relating to this theme
Generally supportive 10
Issues to take into consideration 5
Implementation 3
Other 3

Issues to take into consideration

Consultees raised a number of issues that they felt should be taken into consideration when carrying out this assessment. These included: a specific focus on the transition from child to adult services; the need to consider the role of disabled or D/deaf parents in the process, including ensuring the provision of information in BSL; and a consideration of those young people with speech, language and communication needs, as they tend to be disproportionately represented amongst those experiencing negative outcomes.

" BDA Scotland is aware of many problems with advocacy for Deaf parents attending social worker meetings and children hearing panels where there is no access to documents in BSL. They were given the bulk of documents in English. Our advocates have had to stop meetings on occasions until Deaf parents fully understood the documents and were able to respond accordingly. There is a growing demand for specialist Deaf advocacy support ensuring that Deaf parents are fully supported."

Third sector / equality organisation - British Deaf Association

"[Children and young people] CYP with speech language and communication needs are disproportionately represented among CYP who realise poor outcomes. Consistently studies have shown 60% of young offenders have SLC needs. Others studies have shown 80-100% of young people not in employment, education or training have underdeveloped SLC abilities as do 80% of CYP accessing mental health services. The SCRA are therefore likely to frequently work with CYP with SLC needs. The rights and equality impact assessment could helpfully particularly consider the impact of practice and policy for CYP with SLC needs."

Academic or Research Institute - Royal College of Speech and Language Therapists

Implementation

A couple of comments were received around the process. These included: a suggestion that a review should be carried out of Equality Impact Assessments that have already been undertaken, and a comment wondering how this fits with commitment 26 around Child Rights and Wellbeing Impact Assessments ( CRWIAs) for all policy development affecting children. There was a suggestion that Human Rights and Equality Impact Assessments should be extended to all public services.

Other

Other comments received included: a local authority providing an example of what it already did around Equality and Human Rights Impact Assessment; a call for more information around the detail of how this commitment would be implemented; and a comment that how beneficial it will be will depend on how the Scottish Children's Reporter Administration ( SCRA) implement the recommendations.

Commitment 35. Enhanced learning and development framework for foster carers

35. Improving the support for all looked after children, including disabled children through an enhanced learning and development framework for foster carers - as part of this standard for foster carers, which is still under development, they will have more awareness of learning and development opportunities - including to support them to care for disabled children in their care. (2016 ongoing)

There were relatively few comments about this commitment, most of which were supportive of it. There was also a belief that these learning and development opportunities should be offered more widely than the current scope of the commitment. Table 41, below, shows the key themes identified.

Table 41: themes identified under commitment 35

Theme identified Number of comments relating to this theme
Generally supportive 13
Expand scope 6
Things to include in this learning and development framework 2
Other 6

Expand scope

Whilst consultees were generally supportive of this commitment, it was thought that it could go further and that learning and development opportunities should be extended to other groups, such as all parents of disabled children, kinship carers, and staff who work with children. This would help to improve outcomes for disabled children and could have a preventative impact, minimising the chances of disabled children becoming "looked after". There was also a suggestion that disability equality training should be mandatory for all foster carers.

"We endorse this and request that the Learning and Development Framework should reflect how best to share the knowledge and learning with kinship carers and parent carers to maximise opportunities for children with disability living in all types of family homes."

Public Body - Social Work, Dundee City Council

"There is no reason to suggest that the needs of looked after disabled children in kinship care are any different from those in foster care. Therefore, we suggest that this commitment is improved to ensure that all looked after disabled children and their kinship families receive the support they need."

Third sector / equality organisation - Equality Human Rights Commission and Scottish Human Rights Commission

"Inclusion Scotland supports this commitment, but we feel it needs to go further than merely promoting 'awareness of learning and development opportunities'. We suggest that Disability Equality Training is made a mandatory part of this framework as it establishes positive attitudes to disability and should help foster carers to identify the needs of disabled children that might come into their care."

Third sector / equality organisation - Inclusion Scotland

Things to include in this learning and development framework

Comments relating to what the learning and development framework should include consisted of suggestions to involve D/deaf professionals when working with D/deaf children and to consider providing speech language and communication support to foster carers to help children with communication support needs.

"A national framework for social and health care professionals needs to be developed to include Deaf professionals specializing in social and health care work, ensuring that language, communication, social and emotional wellbeing are properly supported in order to find the right foster carers to meet these needs."

Third sector / equality organisation - British Deaf Association

" RCSLT would recommend foster carers are given particular support in optimising a child's ability to understand and express themselves - not just to enable speedy and strong relationship building between child and foster carer - but also to create an environment in which the child's communication (and therefore health and well being) can be enhanced."

Academic or Research Institute - Royal College of Speech and Language Therapists

Other

Amongst the other comments received were: a request for more detail about the commitment and the suggestion that it was also important to provide foster carers with information about local advocacy projects, and local groups.

"Additionally we suggest that foster carers are given information about the availability of local advocacy projects in case they or a disabled child they foster, ever has a need of such a service, in advocating for their care needs or educational or other services. Additional information about accessible play schemes and other groups to promote their inclusion would also be very helpful."

Third sector / equality organisation - Inclusion Scotland

Q8: Are there any additional commitments and/or ways that you would improve the outcome 2 commitments that you have not already mentioned in your answers above?

Question 8 asked for any additional comments relating to outcome 2. Forty-two consultees responded. Where a comment clearly fitted with a specific commitment, it was themed as part of the response to that commitment, rather than as part of question 8.

Comments on question 8 could be divided broadly into two main categories: those relating to the delivery plan document (51) and those relating to themes raised by Outcome 2 (23). The most frequent comment was suggestions for additional commitments, or areas that should have been given more focus in outcome 2 (24). Table 42, below, shows the main themes identified for question 8.

Table 42: themes identified for Question 8

Theme identified Number of comments relating to this theme
Comments on the Delivery Plan Document 51
The commitments 15
Commitments to add/areas to focus more on 24
Model of disability used 4
Other comments on delivery plan 8
Comments on themes raised by the commitments 23
Dissatisfaction with current LA/health and social care support for disabled and calls for improvements 8
Supportive of integrating health and social care/better working across agencies 3
Engagement 2
Other Comments on themes raised by the commitments 10

Comments on the Delivery Plan Document

The commitments

Some consultees commented that they broadly supported the commitments outlined under Outcome 2.

"The outcomes in relation to health are an important element in disabled people living independently and this is welcomed."

Local government - East Ayrshire Council

"The outcomes in relation to young disabled people are really important. If we are a truly inclusive society we must ensure that there are opportunities for people - irrespective of their abilities."

Individual

However other comments suggested that the commitments did not go far enough.

"As discussed above, Leonard Cheshire Disability is supportive of many of the outcome 2 commitments in this plan. However, we believe that there is scope to go further in ensuring that disabled people have equal and inclusive access to healthcare provision and support for independent living, with control over the best use of resources and support for disabled children."

Third sector / equality organisation - Leonard Cheshire Disability

"The commitments set out in relation to healthcare provision do not go nearly far enough to realise the right to health. Many of the commitments set out in this section apply only to people with a particular disability, or to children and young people. There is also a lack of detail about how many of the commitments will be achieved."

Third sector / equality organisation - HIV Scotland & NAT (National AIDS Trust)

"We suggest there is a gap between the aspirational outcome and the current commitments. Whilst supportive of initiatives to 'improve existing provision' we suspect that some areas require more of a 'transformational' approach."

Third sector / equality organisation - Thistle Foundation

A lack of detail and clarity around the commitments was also mentioned, with one consultee stating that they were unsure how these commitments would progress disabled people's rights under certain articles of the UNCRPD, particularly the following: Article 17 around protecting the integrity of the person; Article 19, independent living; Article 21, freedom of expression and opinion and access to information; and Article 25, health.

Commitments to add/areas to focus more on

A number of consultees suggested additional commitments or highlighted areas which they thought should be given more emphasis in the current commitments. The necessity for specific commitments around mental health and social care were the most frequently mentioned.

The lack of specific commitments relating to mental health was a cause for concern for some consultees. It was noted that the UNCRPD recognises that disability can be mental or physical, yet the delivery plan's focus did not seem to reflect this. The disparity between target waiting times for accessing psychological treatment (18 weeks) compared to physical treatment (12 weeks) was commented on, and it was felt that parity between the two was required. It was noted that people with a mental health condition were less likely to receive treatment, than people with a physical disability, and that there are variations in the quality of mental health services. It was further noted that there are a number of disadvantages associated with mental health problems including: shorter life expectancy for some with serious forms of mental health conditions; stigma; difficulty accessing services, particularly for young people; and gender bias, with women being at more risk of poor mental health than men (it was quoted that one in six women are at risk of poor mental health compared to one in eight men). Concerns were also raised about the implementation of the Mental Health (Care and Treatment) (Scotland) Act 2003. It was hoped that there would be a commitment around ensuring that the new mental health strategy would be rights based.

Specific commitments relating to mental health were suggested. The Scottish Human Rights Commission and the Mental Welfare Commission for Scotland report 'Human rights in mental health care in Scotland' (September 2015) was mentioned and it was suggested that its nine recommendations should be taken forward.

"We were surprised there is not a specific objective on mental health under Outcome 2 and that people with mental health conditions are not mentioned within any of the key objectives. Is Britain Fairer ( IBF) identified that there was an increase in Scotland in the proportion of adults aged 25-34 at risk of poor mental health. Across the UK, mental health problems accounted for 23 per cent of the total 'burden of disease' but only a quarter of all those with mental ill health received treatment, compared with the vast majority of those with physical health problems. It also noted that although there are positive developments in the availability of high-quality mental health care, concerns have been expressed about variations in the quality of mental health services; the use of overly restrictive practices; lack of therapeutic activities and the use of control and restraint… In light of these concerns, we recommend that the delivery plan includes commitments from the Scottish Government that will:

Make progress towards improving access to healthcare and support for people with mental health conditions;

Ensure people with mental health conditions enjoy their right to independent living;

Address outstanding concerns about the implementation of the Mental Health (Care and Treatment) (Scotland) Act 2003 and

Support Police Scotland, NHS Scotland and the Scottish Prison Service to implement the recommendations from the EHRC adult deaths in detention research."

Third sector / equality organisation - Equality Human Rights Commission and Scottish Human Rights Commission

"In relation to mental health services, the current target for access to psychological therapies is 18 weeks from a patient's referral. A commitment should be made to reduce this to 12 weeks, in line with the current target for treatment for physical conditions… Providing treatment to people with mental health issues on an equal basis with people with physical illness will assist in achieving parity and reducing stigma."

Academic or Research Institute - Centre for Mental Health and Incapacity Law, Rights and Policy - Edinburgh Napier University

Access to mental health services for children and young people was also mentioned as being worthy of a commitment in its own right.

" NDCS recommends that an additional commitment is included at number 31 which relates to establishing how well the needs of disabled children and young people are addressed within Child and Adolescent Mental Health Services… By exploring how current Child and Adolescent Mental Health Services meet the needs of disabled children and young people, the Scottish Government can commit to building a mental health workforce with the right skills and expertise to meet every young person's needs, including those who are disabled."

Third sector / equality organisation - National Deaf Children's Society

"Outcome 2 focuses on healthcare provision yet does not refer to Child and Adolescent Mental Health Services ( CAMHS). It is concerning that at present, the draft Delivery Plan makes little reference to mental health services. Article 1 UNCRPD stipulates that 'persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.' Article 23 of the UNCRC recognises that disability can be mental or physical and that every child should enjoy a full and decent life which ensures dignity, promotes self-reliance and facilitates the child's active participation in the community. Children and young people with mental health needs continue to experience a disproportionately high number of human rights violations, yet the services necessary to protect and promote their rights remain inadequate. Additional commitments for outcome 2 should include the provision of CAMHS to meet the needs of all disabled children requiring support, in a timely and effective manner."

Third sector / equality organisation - Together (Scottish Alliance for Children's Rights)

"In 2008, the Committee on the Rights of the Child recommended that additional resources and improved capacities be employed to meet the needs of mental health problems throughout the UK, with particular attention to those at greater risk. This is an area of great concern, but it is not referred to in the document."

Public Body - Children and Young People's Commissioner

Concerns were also raised about the lack of prominence given to social care within this delivery plan, and there were fears that the integration of health and social care might lead to social care being subsumed into health care. It was noted that social care plays an important role in helping, or hindering, disabled people to live full and independent lives.

"We generally agree, in principle, that the above commitments could make a difference to individuals' lives, going some way to promoting equal and inclusive access to health care and support for independent living. However, we feel that there is a lack of specific commitments to develop and enhance disabled people's rights to social care support, and that the focus is weighted towards health care. There is no specific emphasis on social care, early intervention and prevention, or independent living, and so it is difficult to see how the commitments, as they stand, can contribute significantly to the independent living of disabled people."

Third sector / equality organisation - Independent Living Fund Scotland

"Perhaps the most significant omission in the entire [Disability Delivery Plan] DDP concerns the near total failure in outcome 2 to refer to the pivotal role of social care, and its role distinct from healthcare, when it comes to supporting - or preventing - independent living. Moreover, health and social care integration ( HSCI), and the many deep concerns about this that have been expressed by disabled people since the early days of its development, receive only cursory mention… Social care has a much wider role to play in supporting disabled people's active participation in community life, promoting equal citizenship and independent living. There are significant risks that, with more disabled people living in the community (a generally worthy goal for HSCI), if this wider role for social care is not supported, this will lead

to increased isolation and social exclusion, in contravention of a raft of rights under the UNCRPD."

Third sector / equality organisation - Inclusion Scotland

Other issues that consultees wanted specific commitments on included:

  • sexual and reproductive health
  • play
  • the impact of cuts to welfare and social care spending on disabled people and how this can be mitigated
  • disabled young people who are looked after, and collecting data on this
  • self-Directed Support ( SDS)
  • independent living
  • national criteria for local authorities to judge and provide support required
  • engaging with disabled people around integrating health and social care

The rights to play is enshrined in the United Nations Convention on the Rights of the Child ( UNCRC), yet disabled children face barriers to play.

"Disabled children and young people living in Scotland still face multiple barriers to being able to play at home, nursery, school, and in the community. Many of these barriers are amplified by intersections between poverty, disadvantage, disability and environment. This was confirmed by the findings of 'Playing with Quality and Equality: a review of inclusive play in Scotland'. Capability Scotland call on the Scottish Government to include a commitment within the Disability Delivery Plan to reducing the barriers disabled children and young people face in playing every day by acting upon the recommendations within "Playing with Quality and Equality" Report."

Third sector / equality organisation - Capability Scotland

Concerns were raised about welfare reform and cuts to spending and services which disabled people may rely upon, and it was asked that the Scottish Government include a specific commitment looking at the impact of cuts to welfare and social care spending on disabled people and how this can be mitigated.

"Disabled people and their organisations have told the Commissions that they consider the effective implementation of Article 19, the right to independent living, as intrinsic to and a pre-requisite of other rights under the Convention. Cumulatively, welfare reform; changes to the eligibility criteria for social care; cuts on social care budgets; the lack of portable care packages and cuts to disabled people's services are having a particularly negative impact on disabled people's ability to realise their right to independent living… Therefore, we suggest that there should be a commitment to identify the cumulative impact of changes to social care

packages, cuts to disabled people's services and welfare reform and to identify the mitigating actions that could be taken by the Scottish Government."

Third sector / equality organisation - Equality Human Rights Commission and Scottish Human Rights Commission

It was commented that disabled young people who are looked after experience additional barriers, are a "hidden" group and report not being listened to. Disabled children and young people may experience a higher turnover of care placements than other children and young people, and it was commented that there is a lack of reliable local authority data on looked after children with additional support needs and how this support was being provided.

"Together recommends that a commitment should be included under outcome 2 to address the disproportionate number of disabled children and young people who are looked after, and to ensure that there is nationally collected data on the numbers of disabled children in care."

Third sector / equality organisation - Together (Scottish Alliance for Children's Rights)

It was stated that there should be a commitment around SDS, as SDS is delivered on the ground does not always match the aspirations of the policy. In addition there was uncertainty around the fit between SDS and health and social care integration.

"It is striking that there is no commitment to be found within the draft plan regarding SDS. The growing evidence of the failure of some local authorities to offer all 4 options, the fact that the introduction of SDS is being used by some as an excuse to reassess and cut care packages and the stark and unacceptable contrast between the positive rhetoric of the National Strategy on SDS (2010) and experience on the ground are key concerns for disabled people."

Third sector / equality organisation - Inclusion Scotland

Areas where consultees felt that there should be more emphasis in the plan included:

  • health inequalities
  • disabled parents
  • deaf people's needs
  • the needs of those with learning disabilities
  • National Care Standards

"Deaf and disabled parents have not been referred to and this is a significant gap which must be addressed. They need support, training and information equal to that offered to non-disabled parents including parenting skills courses in BSL, to ensure the appropriate support, training and information is available. It is essential to consider them as part of this delivery plan."

Third sector / equality organisation - British Deaf Association

"The Observatory broadly supports all the aspirations described under each of the commitments however we would like to reinforce the importance of ensuring that the specific experiences of people with learning disabilities are included across all of the commitments where this is not stated."

Third sector / equality organisation - Scottish Learning Disabilities Observatory

Model of disability used

Some consultees argued that there was too much emphasis on the "medical" model rather than the "social" model of disability, whilst another favoured the use of a "bio-psycho-social" model, which combines both the medical and social model and is the framework used by the World Health Organisation ( WHO) for measuring health and disability at both individual and population levels.

Concerns were raised that medical aspects were being given more priority than social aspects, and that under health and social care integration, this might result in less funding for social care, which plays an important role in helping disabled people to live independently.

"Disabled people across Scotland want to see seamless, joined up, high quality health and social care services that keep them living well in their own homes where this is possible. However, we have a concern that where Health Boards are responsible for administering the joint budget as the lead agency, that spending will be disproportionately focused on medical services and that these will be delivered in a 'medical model' approach. A particular worry for disabled people who would benefit from focused spending on 'social' services is that they will be disproportionately affected. We are also concerned that priority will always be given to cases of urgent need rather than preventative spending on moderate need."

Third sector / equality organisation - Capability Scotland

"Of course, the treatment of health conditions is important, but that alone is insufficient to tackle disability, discrimination and inequality. Indeed, for someone with an impairment or long-term health condition to access healthcare services on an equal basis requires the removal of such disabling social barriers."

Third sector / equality organisation - Inclusion Scotland

The Royal College of Physicians of Edinburgh ( RCPE) provided an explanation of the "bio-psycho-social" model, quoting from a WHO/World Bank, World Report on Disability.

"The medical model and the social model are often presented as dichotomous, but disability should be viewed neither as purely medical nor as purely social: persons with disabilities can often experience problems arising from their health condition. A balanced approach is needed, giving appropriate weight to the different aspects of disability."

Academic or Research Institute - Royal College of Physicians of Edinburgh ( RCPE)

Other comments on delivery plan

Other comments received, relating to the delivery plan, included:

  • disabled children and young people should be referred to throughout all outcomes, not just Outcome 2
  • retitle Outcome 2 as "Health and support for all ages"
  • consider the language used - some terminology such as "incapacity" was considered to be very negative
  • need clear objectives about how to meet the outcomes
  • consistency of data collection
  • more detail required on how health and social care budgets will be integrated to meet the commitments
  • concern about how service users' voices will be heard
  • smooth out transitions between child and adult service provision

Comments on themes raised by the commitments

Dissatisfaction with current LA/health and social care support for disabled and calls for improvements

Some consultees took this opportunity to express their dissatisfaction with current local authority or health and social care support, and to call for improvement. It was suggested that there was a greater need for input from Allied Health Professionals, that better respite services were needed for young people, to prevent situations where they are placed in older people's care homes, and concerns were noted relating to the hospital environment, and navigating around it.

" ILF Scotland witness wide ranging differences in the levels of support provided by Local Authorities across Scotland to disabled people with similar levels of need. Greater consistency and transparency regarding eligibility for support is required, and so the development of national criteria should be considered as a specific commitment."

Third sector / equality organisation - Independent Living Fund Scotland

Supportive of integrating health and social care/better working across agencies

Some consultees mentioned their support for integrating health and social care and better working across agencies.

"People with PMLD require a range of specialist equipment in order to lead independent lives. This is costly but could be better managed if resources and services were more coordinated and innovative in their approach. Partnership working across sectors is required with an acknowledgement that often it is the specialist organisations with the key resources to support this most excluded group of people."

Academic or Research Institute - PAMIS

Engagement

The importance of engagement with disabled people was emphasised in relation to Outcome 2.

"In order to achieve equal and inclusive access to healthcare provision and support for independent living in the context of health and social care integration, disabled people need to be involved in planning and decision-making by integration partnerships. They also require adequate and independent mechanisms to challenge joint decisions relating to entitlement for care, assessment of need or care charges... Without these commitments, we see no real planned approach that will enable disabled people to have any control over the best use of resources to meet their needs."

Third sector / equality organisation - Capability Scotland

Engagement with disabled people was seen as important when trying to mitigate Westminster cuts to welfare.

"…encouraging professionals where-ever possible to collaborate with disabled people to develop local and flexible solutions and to challenge infringements on their rights that stem from Westminster."

Individual

Other comments

Other comments on themes raised by the commitments included:

  • the conflict between anti-natal screening for foetal abnormalities and human rights
  • Self-Directed Support, and making it work in practice as well as theory
  • an example of a LA working to allow older and disabled people to stay in their own homes
  • independent appeals mechanisms needed, to challenge joint decisions relating to entitlement for care, assessment of need or care charges
  • the importance of transport in accessing health and social care
  • the issue of travel expenses to participate in engagement activities
  • childcare, and the importance of childcare for disabled children to play and interact with peers
  • ability to access services in the local community

"Ensuring the progressive realisation of children's rights, the task of eliminating poverty amongst families of disabled children and basic fairness all demand that we tackle the difficult challenge of creating a truly inclusive, affordable, quality and flexible childcare system that meets the needs of families affected by disability in Scotland."

Third sector / equality organisation - Capability Scotland


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