2) Are there opportunities to better promote equality of opportunity for people within the Section 75 equality categories?

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1 Equality, Good Relations and Human Rights SCREENING The Health and Social Care Board is required to consider the likely equality implications of any policies or decisions. In particular it is asked to consider: 1) What is the likely impact on equality of opportunity for those affected by this policy, for each of the section 75 equality categories? (minor, major or none) 2) Are there opportunities to better promote equality of opportunity for people within the Section 75 equality categories? 3) To what extent is the policy likely to impact on good relations between people of a different religious belief, political opinion or racial group? (minor, major or none) 4) Are there opportunities to better promote good relations between people of a different religious belief, political opinion or racial group? See Guidance tes for further information on the why what when, and who in relation to screening, for background information on the relevant legislation and for help in answering the questions on this template. As part of the audit trail documentation needs to be made available for all policies and decisions examined for equality and human rights implications. The screening template is a pro forma to document consideration of each screening question. For information (evidence, data, research etc) on the Section 75 equality groups see the Equality and Human Rights Information Bank on the BSO website: The majority of policies or decisions need to be screened using the full template. There are some policies or decisions where it is obvious that there is no impact on people. If this is so please confirm using the screening assurance statement pro-forma below. 1

2 Equality, Good Relations and Human Rights SCREENING TEMPLATE (1) INFORMATION ABOUT THE POLICY OR DECISION 1.1 Title of policy or decision Adult Autism Care pathway 1.2 Description of policy or decision what is it trying to achieve? (aims and objectives) how will this be achieved? (key elements) what are the key constraints? (for example financial, legislative or other) To put in place a clear and effective diagnostic pathway leading to the offer of a community care assessment. The Adult Care Pathway provides guidance to professionals, adults and families on autism. It aims to cover the identification and diagnosis of autism, ongoing assessment and access to interventions and services for adults of all ages with autism. This guidance is intended for use by service users, parents, carers, health care professionals, primary care practitioners, education professionals, careers advisers, social security officers, voluntary organisations, employers and any others who offer guidance to or are working with adults with autism. The document applies to all adults from 18 years of age, and takes account of the period of transition from childhood to adult services. ( The children s pathway ( 0-18 years) Six Steps to Autism has already been produced The care pathway takes account of the equality categories in particular age, gender, cultural issues disability and family relationships. 2

3 1.3 Main stakeholders affected (internal and external) For example staff, actual or potential service users, other public sector organisations, voluntary and community groups, trade unions or professional organisations or private sector organisations or others People with Autism- the service users Carers Families Health and Social Care Board Trusts and other health and social care providers Voluntary and community groups 1.4 Other policies or decisions with a bearing on this policy or decision what are they? who owns them? DHSSPSNI Autism Strategy HSCB Transforming Your Care A Review of Health and Social Care in rthern Ireland, (2011); Transforming your Care Strategic Implementation Plan, HSCB, DHSSPS, Service Framework for Mental Health and Wellbeing ( ); - DHSSPS, Learning Disability Service Framework ( ) Draft; - National Institute for Clinical Excellence (NICE) Guidance: Autism Spectrum Disorders in Adults Legislation - Autism Act

4 (2) CONSIDERATION OF EQUALITY AND GOOD RELATIONS ISSUES AND EVIDENCE USED 2.1 Data Gathering What information did you use to inform this equality screening? For example previous consultations, statistics, research, Equality Impact Assessments (EQIAs), complaints. Provide details of how you involved stakeholders, views of colleagues, service users, staff side or other stakeholders. In reviewing the care pathway the HSCB engaged with representatives from the Health and Social Care Board (HSCB), Public Health Agency (PHA), five Health and Social Care(HSC) Trusts, Trust Reference Group members (parents/carers and service users), and voluntary organisations working with children, young individuals and adults with autism and their families/carers). This Adult Care pathway reviews an original care pathway developed and mandated by Regional Autistic Spectrum Disorder Network Quantitative Data Who is affected by the policy or decision? Please provide a statistical profile. te if policy affects both staff and service users, please provide profile for both. Category Gender What is the makeup of the affected group? ( %) Are there any issue or problems? For example, a lower uptake that needs to be addressed or greater involvement of a particular group? The Adult Psychiatric Morbidity Study highlighted prevalence in men of around 1.8% and around 0.2% in women providing an average of 1 in 100 across England. This is recognized as similar in rthern Ireland. (NICE Guidelines) Census Figures 2011 indicated that in the entire population the proportion of females in 2011 is 51.00% (923, 540). The male population is 49.00% (887, 323) in 2011 Age The Care pathway relates to those adults in rthern Ireland aged 18 years and over. 4

5 In the interests of directing services to those in most need the receipt of specialist services will be reserved for those encountering sustained, significant difficulties related to a collective range of autism features. It is estimated that there is a prevalence rate of 1 in 100 adults with autism in the adult population Census figures for the whole of NI indicated that % (101, 589) % (126, 036) % (124, 044) % (373, 943) % 347, 867) % (94, 346) % (145, 593) % (86, 740) % (21, 187) 90 and over % (10, 141) Religion Political Opinion Marital Status Dependent Status Disability Ethnicity Census 2011 figures indicate that there are approximately 207,000 carers in rthern Ireland though the precise number of carers of people with autism is unknown. with a more severe learning disability also have a greater likelihood of having autism according to a report published on 31st January 2012 by the NHS Information Centre. There are no robust statistics to show the true state of affairs for people from BME communities who have autism. This needs to be urgently assessed, so that health and social care can properly map out how they can deliver the support and services people with autism need. 5

6 The prevalence of autism is thought to be the same across all ethnicities, with around 1 in 100 people in the UK having the condition. Sexual data is available Orientation 2.3 Qualitative Data What are the different needs, experiences and priorities of each of the categories in relation to this policy or decision and what equality issues emerge from this? te if policy affects both staff and service users, please discuss issues for both. Category Gender Needs and Experiences The majority of those diagnosed with Autism Spectrum Disorders are boys and men, consequently the voices of girls on the spectrum have been practically inaudible. The care pathway needs to consider this. Age Over the years there has been a tendency to view autism as a condition solely affecting children. But it is a lifelong condition across ages. This care pathway focuses on adults only, however the transition from children s services into adult services is considered a critical and important period. Exist (National Autistic Society, 2009) suggests that there is a higher prevalence of mental health conditions in people with autism over the age of 40. The National Autistic Society has also seen a dramatic increase in people in their 40s, 50s and even older being diagnosed for the first time. With increased public awareness of autism, it seems that more people may be seeking a diagnosis for themselves. However, as so many of these people have been undiagnosed for so long, it means that a large group of older adults have been, and are being, overlooked by health and social services. 6

7 Furthermore, those aged 65 years and over with autism are likely to either have no support or rely heavily on family members Adults with autism experience the same age-related mental health conditions as the rest of the population. However, even though the service-user may have a co-morbidity of autism and a mental health condition, often only the mental health condition is recognized and the autism left undiagnosed and unsupported. Another issue is social isolation experienced by ageing adults with autism and how this might be tackled. By raising the profile of adults with autism (including older adults} offering diagnosis and support, the care pathway expects this matter to be addressed. Religion Political Opinion Marital Status Dependent Status Looking after someone with autism can present a parent or carer with a number of challenges. It can also put considerable strain on relationships and on siblings. Because autism is a spectrum disorder, people s experiences vary enormously, but it's generally harder for parents and carers of people with more severe autism, Referenced by Senior Helpline Adviser for The National Autistic Society (NAS). The most common difficulties for carers include coping with behaviour issues and isolation. Many adults with autism live with their parents. The National Autistic Society receives thousands of calls from carers of adults with autism. One of the big challenges for these carers is the lack of services and support for adults with autism. There are a number of issues in relation to support for siblings, where there is evidence to suggest that they often take on caring 7

8 responsibilities when their parents are no longer able to. Those aged 65 years and over with autism are likely to either have no support or rely heavily on family members. Accessible information formats are available on request Disability Autism is sometimes described as a hidden disability, not only because it has no physical signs, but also because adults with autism are some of the most excluded, and least visible, people in the UK. The National Audit Office report (2009) recognised the problems of diagnosing autism, particularly in mental health settings. Many people with autism have an increased risk of social exclusion and health problems, particularly a risk of mental illness. This means they only engage with services when their health has deteriorated, to a point of requiring acute interventions. I Exist (National Autistic Society, 2009) suggests that there is a higher prevalence of mental health conditions in people with autism over the age of 40. The care pathway refers to the need for the process to be accessible More information is needed about individuals with autism and additional sensory processing differences to enable them to access services. Ethnicity Adults must be resident in the HSC Trust s geographical area and registered with a GP. There are some issues with accessing services through GPs. In respect of some ethnic groups and Travellers registration is low. The autism service would be willing to take self-referrals in these circumstances but it is unlikely that these groups will access the more specialist services. The likelihood of identification and access to diagnosis may be different among different ethnic groups due to cultural constructs of disability. Within minority ethnic groups there is an increasing awareness of the importance of understanding traditional beliefs, attitudes and practices towards disability. Culturally imbedded conceptual frameworks of disability affect the way in which individuals with disability see themselves and the world around them. This is important in relation to guidance within the care 8

9 pathway in relation to assessment. Anecdotally, we know that people with autism from ethnic minority backgrounds face huge challenges. We frequently hear from individuals and families who say that cultural and language barriers prevent them from accessing the support they desperately need. In particular for black and minority ethnic communities or where English is not a first language, difficulties can be compounded and people may face double discrimination. This is an important area but at present there is a dearth of research on the subject. Sexual Orientation The available evidence suggests that anxiety, depression, selfharm and suicidal feelings are more common among lesbian gay bisexual and transgender people than among heterosexual people. Rates of drug and alcohol misuse are also higher among lesbian gay bisexual people. In all studies, bisexual men and women were usually found to have the highest levels of mental distress. It is likely therefore that people with autism who are gay, lesbian or bisexual will also experience similar issues which may be exacerbated by their condition. This is an area where national research is required but needs to be considered in the context of this care pathway. 2.4 Multiple Identities Are there any potential impacts of the policy or decision on people with multiple identities? For example; disabled minority ethnic people; disabled women; young Protestant men; and young lesbians, gay and bisexual people. The screening questions in 2.4 identifies the multiple issues in respect of autism across for example age, gender, disability and dependence. It is recognised that because adults with autism are some of the most excluded, and least visible in society not least because symptoms are often hidden. Adults with autism are a highly heterogeneous group. In those without intellectual disability, it can be difficult to detect the condition, especially where there is little awareness or training. 9

10 Although historically associated with intellectual disability, it is now thought that most people with ASC will be within he normal range of IQ.50. They may discover they do not meet criteria for eligibility or may only receive help in crisis situations Based on the equality issues you identified in 2.2 and 2.3, what changes did you make or do you intend to make in relation to the policy or decision in order to promote equality of opportunity? In developing the policy or decision what did you do or change to address the equality issues you identified? What do you intend to do in future to address the equality issues you identified? Reinforces the duty of promoting equality for all adults with autism. Several recommendations in the care plan have set out how raising awareness of autism is vital to services uptake and inclusion. This will impact positively on all strands. Anyone should be entitled to a community care assessment regardless of age, disability, ethnicity, gender (including transgender), religion or belief or, sexual orientation. The Care Pathway recognizes that adults with autism from black and minority ethnic communities groups may face difficulty in accessing services. There is anecdotal evidence that many people in black and minority ethnic communities do not make use of health and social care services, potentially because 10

11 of cultural decisions not to access the services or the lack of understandable information on the topic. The Care Pathway recognizes that adults with autism from black and minority ethnic communities groups may face difficulty in accessing services.. The focus on personalization and access to information should result in a focus on the individual. This is positive 2.6 Good Relations What changes to the policy or decision if any or what additional measures would you suggest to ensure that it promotes good relations? (refer to guidance notes for guidance on impact) Group Impact Suggestions Religion Political Opinion Ethnicity It is not anticipated that this care pathway will impact on good relations As above As above 11

12 (3) SHOULD THE POLICY OR DECISION BE SUBJECT TO A FULL EQUALITY IMPACT ASSESSMENT? A full equality impact assessment (EQIA) is usually confined to those policies or decisions considered to have major implications for equality of opportunity. How would you categorise the impacts of this decision or policy? (refer to guidance notes for guidance on impact) Do you consider that this policy or decision needs to be subjected to a full equality impact assessment? Please tick: Please tick: Major impact Minor impact further impact Yes Please give reasons for your decisions. 12

13 (4) CONSIDERATION OF DISABILITY DUTIES 4.1 In what ways does the policy or decision encourage disabled people to participate in public life and what else could you do to do so? How does the policy or decision currently encourage disabled people to participate in public life? What else could you do to encourage disabled people to participate in public life? It is not anticipated that the autistic care pathway will impact on disability duties 4.2 In what ways does the policy or decision promote positive attitudes towards disabled people and what else could you do to do so? How does the policy or decision currently promote positive attitudes towards disabled people? What else could you do to promote positive attitudes towards disabled people? As above 13

14 (5) CONSIDERATION OF HUMAN RIGHTS 5.1 Does the policy or decision affect anyone s Human Rights? Complete for each of the articles ARTICLE Article 2 Right to life Article 3 Right to freedom from torture, inhuman or degrading treatment or punishment Article 4 Right to freedom from slavery, servitude & forced or compulsory labour Article 5 Right to liberty & security of person Article 6 Right to a fair & public trial within a reasonable time Article 7 Right to freedom from retrospective criminal law & no punishment without law Article 8 Right to respect for private & family life, home and correspondence. Article 9 Right to freedom of thought, conscience & religion Article 10 Right to freedom of expression Article 11 Right to freedom of assembly & association Article 12 Right to marry & found a family Yes/ yes Article 14 Prohibition of discrimination in the enjoyment of the convention rights 1 st protocol Article 1 Right to a peaceful enjoyment of possessions & protection of property 1 st protocol Article 2 Right of access to education If you have answered no to all of the above please move onto to move on to Question 6 on monitoring 14

15 5.2 If you have answered yes to any of the Articles in 5.1, does the policy or decision interfere with any of these rights? If so, what is the interference and who does it impact upon? List the Article Number Interfered with? Yes/ What is the interference and who does it impact upon? Does this raise any legal issues?* Yes/ Issues of capacity covered in detail in the 8 care pathway with the intent that it is positive. Reference to accessing informed consent from those without capacity also addressed with advice to follow DOH Guidance. * It is important to speak to your line manager on this and if necessary seek legal opinion to clarify this 5.3 Outline any actions which could be taken to promote or raise awareness of human rights or to ensure compliance with the legislation in relation to the policy or decision. The purpose of the care pathway is to have a plan in place that also recognises the rights, dignity, choice and privacy of the individual. The care pathway specifies the need for a person centred approach to be adopted. This will ensure those with autism and their families, where relevant, are part of the process and that better outcomes will be generated. The care pathway recognises issues of choice for the individual to involve family and relatives in the process but balanced with the rights of carers for information 15

16 Issues of how staff deal with informed consent are addressed in the pathway. Likewise the need for any care plan to be shared with the individual in a language and format that suits their needs is also part of the plan. The option for provision of the care pathway in accessible formats is included. 16

17 (6) MONITORING 6.1 What data will you collect in the future in order to monitor the effect of the policy or decision on any of the categories (for equality of opportunity and good relations, disability duties and human rights? Equality & Good Relations Disability Duties Human Rights Approved Lead Officer: Position: Policy/Decision Screened by: Signed: Date: Please note that having completed the screening you will need to ensure that a consultation on the outcome of screening is undertaken, in line with Equality Commission guidance. Please forward completed template to: Equality.Unit@hscni.net. 17