This section contains a range of articles on different aspects of the mental health of people with intellectual disabilities. Persons with intellectual disabilities (ID, formerly mentally retardation) often have other psychiatric diagnoses. When more than one disorder is diag. The term also can be used to describe the coexistence of an intellectual disability and a diagnosis of mental illness (Graziano, ). Intellectual disability is.
Health Intellectual Disability, Mental
Until recently this topic has received less attention than that of challenging behaviours, and is particularly beset by definitional and assessment criteria. Moreover these persons seem to experience the full range of psychiatric illnesses with affective disorders and psychoses the more common. Cooper and Bailey  undertook psychiatric examination of persons randomly selected from a register of all persons with an intellectual disability in one English County.
They report the percentages of people presently experiencing the following 'psychiatric disorders': These results were broadly comparable to similar studies done in London and Denmark.
The proportions are higher than the proportions of non-intellectually disabled people found in a large-scale survey of households in England Meltzer et al, . A study in Wales Morgan, Ahmed and Kerr,  which identified over 1, persons with a intellectual disability in one administrative area of , persons found that in one year Emerson  reported around 2 in 5 of young people aged 11 to 15 years with learning disabilities had a diagnosable mental health problem compared to one in ten adolescents who do not have learning disabilities.
This was based on national sample of families in England. The two groups differed mainly in conduct disorders ADHD , anxiety and depression.
Some caution must be exercised in extrapolating the results of small-scale surveys to whole populations. That said, this data suggest that among the intellectually disabled population of the Republic of Ireland there are in the region of around 8, persons with a psychiatric condition of whom some 4, may require some form of specialist assessment and treatment.
Emerson, Moss and Kiernan  identified three possible ways in which psychiatric disorders may be associated with challenging behaviour:. Recent studies in Northern Ireland Cunningham et al,  of people admitted to a specialist assessment and treatment facility primarily because of aggressive behaviours suggest that two-thirds of those demonstrating severely challenging behaviours had a mental health problem.
Current data is not adequate on which to base population projections for the Republic of Ireland - suffice to say that of the estimated , persons with severely challenging behaviours given earlier it is likely that upwards of two-thirds - 1, will have a psychiatric condition.
The needs of people with intellectual disabilities who break the law are generally thought to be better met within health and social services than through the criminal justice system Murphy and Fernando, .
This means it can be very difficult to determine the numbers of people who commit offences as they may not come before the courts or the police may decide not to press charges.
Simpson and Hogg  concluded after a systematic review of published studies internationally that "there is no compelling evidence that the prevalence of offending among people with ID is higher than for the wider population" p.
There is some evidence to suggest that the relative prevalence of sexual offending particularly against younger and male children , criminal damage and burglary but not theft are higher among people with borderline disabilities.
Arson also seems to be more common Day, . An international working party IASSID,  noted that additional mental health problems, drug and alcohol abuse, and social factors, such as homelessness and unemployment, may increase the risk of offending by a person with an intellectual disability and lead to further social exclusion. Persons who pose an ongoing danger to others may need to be detained against their will.
Full legal safeguards need to be in place for recognised places of detention outside of the criminal justice system. More attention needs to be given to preventative social measures. Another approach to the identification of people with additional needs is to examine the characteristics of those admitted to specialist units.
The following conclusions can be drawn from studies reported to date from England, Sweden, Finland and Northern Ireland. The population of person admitted to specialised units form a particular subset of persons with intellectual disabilities; typically those with mild or borderline disabilities living in inappropriate accommodation and who have a history of psychiatric illnesses.
It is likely that neither mainstream mental health services or intellectual disability services have responded adequately to the needs of this client group. However the level of repeat admissions suggests that special units must be linked with ongoing community support services which are often absent Xenitidis et al,  , and this is discussed further in later sections on appropriate models of service.
Ireland is a signatory to a number of international conventions that both enshrine the rights of disabled citizens to equality of access to services including health and social care services , and the rights of the mentally ill to appropriate care in pursuance of quality of life and opportunity.
This almost invariably means that additional resources will need to be made available for this purpose and that a wide range of specially tailored measures will be required". Article 3 of the UN Declaration on the Rights of Disabled Persons sets out what is expected of states in their treatment of persons with mental illness:. Specifically in relation to children, Article The Irish Government have legislated on equality for disabled citizens across a broad range of areas, and on action to combat discrimination.
However, the CESCR comments indicate that further effort is required to discharge obligations more fully particularly with regard to disabled citizens and health services. In the context of services considered in this study, ICESCR compliance would mean equality of access between disabled and non-disabled citizens to appropriate mental health and behavioural services.
Later sections of this report address this issue directly and indicate that, at present, such equality of access does not exist.
At the time of writing this report, the Mental Treatment Act is still on the statute book. The primary purpose of mental health legislation is to offer assessment and treatment to those suffering mental disorder who, due to their disorder and diminished capacity, are likely to cause harm to themselves or others and who are unable or unwilling to accept such treatment.
Legislation must balance the interests of the individual with the protection of society. There is no single legislative provision in Ireland for those persons with Intellectual Disability.
For instance, while the Mental Health Act makes provision for most of the issues relating to such persons, the Mental Treatment Act applies in relation to compulsory admissions. Consequently this overlap is likely to cause problems.
It has a separate Mental Health Review Board. Application can be made by a spouse or relative of the person, an authorised officer or a member of the Garda Siochana. This Paper was wide-ranging - reviewing International law and principles in relation to mental disorder with particular note taken of Human Rights and European law.
This Paper took cognisance of the need for services and standards especially for those patients deprived of their liberty for compulsory treatment by the State.
Surprisingly, this Paper did not address Mental Health Services, dealing only with legislative issues. It did, however, refer to the development of psychiatric services included in the Mulcahy Report  which was published in Other issues omitted include Reciprocity of Services, Guardianship, Court of Protection and the need for an Official Solicitor, the power of attorney extension to include health care decisions and a right to a minimal standard of service provision by statute.
Children must be afforded the same rights as adults. However, raising the age of consent from 16 years of age to 18 years of age would appear to preclude this age group from access to Mental Health Tribunals. The Act also makes provision whereby children may be admitted to an 'approved' center by order of the Court without any examination by a Consultant Psychiatrist. This may be a serious infringement of children's civil rights. Furthermore, this provision is in conflict with the Child Care Act In addition, there is no statutory provision for the separation of children and adults in 'approved' centres.
It is important that their remit extends to include those who are both detained in 'approved' settings and those de-facto detained both in approved and non-approved centres. At present only six beds provided by Stewarts Hospital Services Ltd in Dublin are classified as 'hospital beds' and therefore inspected by the current Inspector of Mental Hospitals.
Therefore, the vast majority of individuals with intellectual disability who reside in community accommodation, and who may also be receiving medication or other psychiatric treatment to which they have not had the capacity to consent, are 'de facto detained' and are not subjected to any formal independent monitoring.
Present mental health legislation is only applicable in practice to a small number of individuals with intellectual disabilities. The vast majority of those with intellectual disability who are receiving psychiatric treatment within the specialist services are outside the remit of the protective legislation. This matter needs to be addressed with a degree of urgency. However, the authors found little consensus and limited evidence-based practice. The literature is sparse on identifying efficacious treatment approaches with this client group.
In part this is due to the neglect of their particular needs, the definitional difficulties noted earlier and the lack of suitable measurement tools to assess changes in mental health states and challenging behaviours.
Psycho-pharmacological interventions constitute the most common form of treatment. Studies undertaken in North America and UK suggest that in many localities approximately one in two people with intellectual disabilities with severe challenging behaviours are prescribed anti-psychotic medication.
Moreover clients receiving a cocktail of drugs will require careful managing and regular review. Even so there is little empirical evidence to demonstrate the efficacy of drugs per se. However advances in identifying neuro-biological determinants of certain behaviours does hold out the hope of developing specific drug therapies. The use of behavioural therapies also holds much promise. These consist of detailed behavioural analysis to determine the functions of the behaviour and the use of differential reinforcement schedules to modify existing behaviours and to build more purposeful behaviours.
There is evidence that these approaches can bring about rapid, significant and widespread reductions in severely challenging behaviours although there is less empirical data that these are generalised to new situations and maintained over time. Latterly this view has been challenged and case reports are appearing suggesting that these therapies can be successful with people who have intellectual disabilities and mental health problems.
The panel identified seven psychosocial interventions in addition to medication that they would possibly use to treat people with depression, schizophrenia and generalised anxiety disorders. The three most highly recommended in almost every situation were:. Treatment interventions must be based on this formulation and the effects of any intervention must be reviewed regularly to inform future intervention and management strategies".
Multi-disciplinary assessments and treatments need to feature at all levels of service delivery from community-based services through to specialist units. There is widespread agreement that a continuum of service provision is required to meet the diverse needs of a sizeable proportion of the population with intellectual disabilities. This has been conceptualised by Mansell et al  as four interrelated sub-systems operating within the same service system or across different service systems.
Each sub system serves a different function as the name implies and within each there are distinct procedures that services need to follow in order to make effective responses to the person's behaviours. The first three subsystems should be present in generic intellectual disability services, with appropriate support from the mental health services. According to Mansell, specialised support could be provided from another service such as a specialist support team or specialist centre.
However it would be possible for larger intellectual disability services to create such a resource for themselves. Although the main presumption is that this client population will be served by augmented intellectual disability services, this section concludes by exploring the contribution that generic mental health services could make in service provision. Four main themes recur in making generic intellectual disability services more responsive to the needs of people with challenging behaviours and mental health needs in the areas of prevention, early detection and crisis management, namely:.
Many of these are 'good practices' that are commended for all service-users. Examples of specific initiatives include the following:. New staff are properly inducted in managing the challenging behaviours and activity programmes of the clients with whom they work.
A range of in-service training courses are available to all service staff depending on the client groups with whom they work. Refresher courses are also provided. Services are staffed and rotas drawn up so that clients can receive one-to-one attention at some points during the day; especially at times when challenging behaviours are more likely to be shown.
Records are kept of client's behaviour and actively shared with colleagues in the same services and other relevant services e. Between day and residential services so that changes are noted and acted upon. Appropriate reactive strategies are in place so that any behaviours displayed are appropriately managed and defused. Ideally these should be documented for each individual person and made available to all staff working with that person, including 'bank' and relief staff.
Residents have their own bedrooms with at least two 'shared areas' such as sitting rooms so that people can be apart from others without going to their bedroom. Specialist staff are readily available for consultation about issues or concerns about a particular client - either by telephone or visits.
The use of a contingency budget to cover the costs of managing a crisis is useful because in practice a major obstacle to managing crisis situations can be the difficulties in obtaining appropriate resources. Equally generic services need to be better equipped to deal with crises when they arise.
Among the strategies that have been found to be effective are:. Arrangements are in place to provide extra support staff to the facility in order to maintain the person in the service setting. These staff should be experienced and trained in managing people with challenging behaviours. Arrangements are in place for the person or other residents to stay elsewhere on a short-stay basis.
The staff or carers in any receiving service need to well briefed about the person so that programmes and procedures for maintaining his or her behaviours are at least maintained. An audit needs to be undertaken by each intellectual disability service provider of the recurrent and capital costs they anticipate incurring in meeting the above recommendations.
These procedural standards could then be written into service contracts when funding is provided for 'augmented' services. There is experience internationally of doing this primarily by locating specialised beds in psychiatric or general hospitals with linked out-patient clinics. Mainstream generic mental health services cannot provide the more comprehensive service packages that these clients need;.
The main therapeutic approaches used in mainstream psychiatric units may have limited applicability to people with intellectual disabilities;. People with intellectual disabilities require longer admissions but given the pressures on in-patient psychiatric beds this is not possible;. Nurses and psychiatrists with generic training have not been trained in general to deal with people who have intellectual disabilities;. Inpatient beds must be supported by community mental health services which are already over-stretched.
The disadvantages an be overcome through the promotion of dual specialisms in both intellectual disabilities and mental health. Dually qualified staff could be employed in specialist teams that serve both client groups as well as in specialist treatment units.
At present, Senior Registrar posts in psychiatry have been operating a system of dual training in intellectual disability and either child and adolescent psychiatry since the early s. Dual training in nursing is available but additional resources here are needed to support service development. Moreover specialised assessment and treatment units might be located alongside generic psychiatric facilities and while they may have some autonomy they could share some resources such as staffing and training.
The need for specialist services to address the complex needs of a small but significant group of people with the most severe challenging behaviours and mental health needs is not questioned.
However an ongoing debate in service provision is the merits of removing people to specialist assessment and treatment units for people with challenging behaviours against making available specialist support teams with the aim of maintaining people with challenging behaviours in community settings.
At present we lack strong evidence to recommend one approach over the other, as so much depends on the clients, the staff in post and resources available to each. Professional opinion is also mixed. For example, the Irish Section of the Royal College of Psychiatrists Learning Disability Section has argued the need for 'in-patient mental treatment units' whereas the Psychological Society of Ireland has favoured the specialist team approach.
They can be approved under Mental Health legislation as places where staff and clients can be provided with protection under legislation;. They offer short-term assessment and treatments - typically around three months - with the person returning to their community placement. Ideally these should be multi-disciplinary in nature with psychiatric and psychological involvement;.
They provide longer-term treatment and support for people with more intractable problems and often, by default if not design, provide a holding place while suitable community facilities are planned for people admitted who are unable to return to their previous accommodation.
This 'delayed discharge' group can take up a sizeable proportion of the beds; and. They provide appropriate care for people who pose a major threat to themselves, fellow residents and society as a whole. It is preferable that these different functions are fulfilled by different facilities rather than the one facility attempting to provide them all. This is sometimes done by having different buildings or 'wings' of buildings on the same site, or longer-stay facilities are established in different locations.
Under the Children's Acts or Orders in the United Kingdom and Ireland, children must be accommodated in separate buildings from adult persons. However, children's facilities can be provided on the same site. They can contain high intensity episodes of challenging behaviours and those of high frequency of occurrence through access to a range of procedures that are harder to implement in community services such as restraint and isolation;.
The staff in specialist units become highly skilled in managing behaviours across a range of clients;. The environment can be customised to meet the particular needs of these clients, such as the provision of specialist rooms and therapies;.
The unit can become a resource centre of skills and expertise with the opportunity to develop new approaches to assessing and treating clients;. The costs per person are reduced when people with high support needs are brought together in the one setting; and. The units fill a gap in current provision, particularly for those persons who fall between existing intellectual disability and mental health services. Out-patient clinics can provide an ongoing service post-discharge.
People are removed from their usual environments and any behaviour changes that occur in the specialist unit may not generalise. This leads to repeat admissions of the same clients. People may be removed from some distance from their homes, especially those living in rural areas. The grouping of different diagnostic groups together can create chaotic living environments and lead to inappropriate learnt behaviours. The presence of a specialist unit lowers the threshold of tolerance in community services to cope with these clients.
The units become used as a first resort. The units de-skill staff in intellectual disability services as the resources are not made available to train and support community staff. The units 'silt-up' with clients who cannot be found a community place but the incentive to do this is much reduced as they already are placed in the Unit Cumella and Roy, . The costs per place in units can be high but the quality of life outcomes for the clients resident in them over longer periods are low.
Surveys undertaken by Bailey and Cooper  in England and Wales, and by Smiley et al  in Scotland have identified wide variation among Health services in their provision of 'short-stay' in-patient assessment and treatment beds for people with intellectual disabilities. These range from none to 21 places per , of ordinary population.
The median number was around beds per , In Northern Ireland, recent studies of admissions to two specialist hospitals identified that around 4 beds per , of ordinary population were used for admissions of up to two years McConkey et al , : Slevin et al , .
The median length of stay varies widely across Units for people admitted predominantly with a psychiatric condition. The range is from around one month to three months but it can extend beyond one year. Hence a planning ratio of 4 beds per , could in one year accommodate some 16 - 48 persons per , of a population. The size of units also varies greatly although recent research reports have focussed on Units with around 12 beds, usually serving population units of circa , persons.
These units include those located within intellectual disability services as well as those within generic psychiatric services. Other health authorities promote the concept of day hospitals for both short-term and longer-term placements.
Some form of short-stay assessment and treatment units are likely to be required. They should be planned according to local needs and existing provision and most crucially as part of an overall service development plan of services for this client group within a catchment area. Many of the foregoing arguments relating to the advantages and drawbacks of shortstay units apply equally to the concept of specialist long-stay units. There is not always agreement however that specialised long-stay provision is required.
In Scotland for example Smiley et al , the projected number of long-stay beds in small homes or hospitals varied from 0 to 17 per , across 15 health authorities. It should be noted that this provision would include the needs of people with profound and multiple disabilities previously resident in long-stay hospitals, in addition to those with challenging behaviours.
Long-stay accommodation should be planned for as a component of existing intellectual disability services and should not be an adjunct to the specialist short-stay treatment units as it will compromise their primary functions. The concept of multi-disciplinary teams has been around for many years.
Specialist teams are an extension of this concept but with the important difference that they focus exclusively on clients with challenging behaviours or other additional complex needs.
The teams are multi-disciplinary and usually consist of intellectual disability nursing, clinical psychology, and social work with psychiatric input. However, team members could include speech and language therapists and occupational therapists, alongside other specialists such as music or art therapists. The teams are peripatetic in that they work with individuals in their present settings such as the family home, day centres or residences.
However some teams function as the 'outreach' arm of a specialist unit. Typically they have small numbers of clients on their caseload at any one time. They strive to discharge clients as soon as appropriate in order to concentrate on an active caseload. Providing hands-on support to service staff at times of crisis and when introducing new management programmes; and.
Emerson  reviewed the sizeable number of studies that were carried out in the s into specialist teams. He noted the following:. Enhancements in the persons' quality of life and adaptive skills are reported along with higher carer satisfaction and improvements in the carers' coping with these behaviours; and. However all teams are not uniformly successful. Allen and Felce  identified certain factors that are likely to enhance the effectiveness of specialist teams.
Moreover, teams in themselves cannot provide the solution to people who have to be moved from their present residence because of the threat they pose to themselves or others. Some form of short-stay facility will be required. This could be planned as part of the overall short-break services. Similar arrangements may be required to replace the person's usual day service arrangements with the person attending some form of specialist day service.
The team will also need access to a facility where people can be detained, possibly because of an offence they have committed. Specialist teams are a relatively new phenomena and hence the literature gives sparse details on which to base estimates of the numbers of professionals needed. A survey of 46 teams in England and Wales Emerson et al,  found the community intellectual disability nurses made up half the membership of all the teams. Psychological input was also a feature of most teams.
At anyone time, a median of around 6 clients were served by the teams range one to 25 persons. First investing in existing community services so that they become more robust in the early diagnosis and management of crises and the prevention of placements breaking down. Second the provision of specialist support teams to existing services who have a vital role to play in ensuring continuity in care across different settings. Despite advancement in the provision and quality of both mental health and intellectual disability services in Ireland in recent years, the distinct needs of the dual diagnosis group have yet to be met satisfactorily.
This is in spite of a number of reports in recent years that have catalogued the frustrations of dual diagnosis patients and carers in attempting to gain access to appropriate mental health services. The Needs and Abilities Report  contradicted this somewhat, indicating the DoHC's policy is that persons with a mild intellectual disability not in contact with intellectual disability services should normally access generic mental health services.
In , the then Department of Health published a discussion paper on the Mental Health needs of persons with intellectual disability the Mulcahy Report . Again, the gaps in provision for this dual diagnosis group were clearly highlighted, and detailed proposals made for a multi-tiered service comprising community residential and specialist serviced delivered by dually trained professionals. At the time of writing, the proposals of the Mulcahy Report have not been acted on by Government.
In , the Eastern Regional Health Authority made similar and detailed proposals after extensive consultation for service development that have yet to be funded for implementation. Face-to-face interviews were also conducted with a range of people involved in managing services, patient care and advocacy from both statutory and voluntary services. These sources have further reinforced this message of lack recognition, strategy, planning and delivery of appropriate services.
As regards funding, the DoHC is currently engaged in an exercise to establish the exact baseline funding for intellectual disability services by Health Board area. Currently only national figures are available. This has precluded this study from assessing the quantum of funding for population catchment areas across Ireland. At Health Board level, there is insufficient managerial capacity to ensure the effective delivery of services meeting the needs of the dual diagnosis group - even though the Boards are the statutorily responsible body and notwithstanding that they may contract with third party voluntary bodies for care delivery.
Health Boards, for example, could not readily provide the researchers with adequate information on their residents currently receiving dual diagnosis services funded through the Boards. In line with Enhancing the Partnership  , local Consultative and Development Committees have been convened bringing together statutory and voluntary providers. Whilst these committees may still be at an early stage in their work, there appears to be little systematic assessment as yet of needs of dual diagnosis citizens in the local population and consideration of appropriate service responses.
Both intellectual disability and mental health services in Ireland have been reformed in recent years, with a stated policy objective of a provision of services in community based settings. In mental health, for example, there has been a widespread move to build capacity in multi-disciplinary community mental health teams that are able to support people to live in community settings as appropriate, provide early intervention, and an access route when necessary to more specialised assessment and treatment services.
Persons with a dual diagnosis currently in the generic intellectual disability services, however, have great difficulty in accessing generic mental health services. This research found that:. This analysis is based on the number of approved consultant posts per Comhairle na nOspideal Report and actual figures compiled by the Irish College of Psychiatrists taking account of job-sharing, temporary posts and sessional commitments to generic psychiatry , Recommended numbers are per the Irish College of Psychiatry Guidelines.
Community Area Mental Health teams operating under the generic mental health services do not routinely provide a service to persons in the intellectual disability. It is assumed that the generic intellectual disability services provide for the entirety of the needs of their population - with only informal access to secondary psychiatric services;. Historically, voluntary bodies did not operate to defined catchment areas - and so there was no automatic assumption of access to the local voluntary services for people living in an area.
This is changing in agreement with Boards, who have assumed a lead funder role in recent times. Richard Hastings receives funding from Cerebra and several government health research funders in the UK. Pratt foundation, beyond blue, Dara foundation. She also receives funding from a range of philanthropic organisations e. Vaso Totsika receives funding from UK research councils and voluntary organizations.
Republish our articles for free, online or in print, under Creative Commons licence. High-quality epidemiological research shows children and adolescents with intellectual disability are four times more likely to have diagnosable mental health problems compared to others their age.
This mental health inequality clearly needs attention. Part of the problem is a process called diagnostic overshadowing: This often makes it difficult to identify mental health problems in children with intellectual disability. Birth cohort studies follow the development of groups of children that are representative of the population. Data from such studies in the United Kingdom and Australia show the inequality in mental health between children with intellectual disability and those without emerges early.
By the time children with intellectual disability are three years old, they have more mental health problems than other children. A Australian study of over children and adolescents with intellectual disability found only a small reduction in mental health problems over its year follow-up. It seems that once mental health problems emerge, children with intellectual disability are likely to suffer from them for a long time.
But despite the high level of mental health problems in this group of children, access to treatment is poor.
In the UK, mental handicap had become the common medical term, replacing mental subnormality in Scotland and mental deficiency in England and Wales, until Stephen Dorrell , Secretary of State for Health for the United Kingdom from —97, changed the NHS 's designation to learning disability. The term mental impairment was removed from the Act in November , but the grounds for detention remained. However, English statute law uses mental impairment elsewhere in a less well-defined manner— e.
A BBC poll conducted in the United Kingdom came to the conclusion that 'retard' was the most offensive disability-related word. It was, however, noted that two previous similar complaints from other shows were upheld. In the past, Australia has used British and American terms interchangeably, including "mental retardation" and "mental handicap".
Today, "intellectual disability" is the preferred and more commonly used descriptor. People with intellectual disabilities are often not seen as full citizens of society.
Person-centered planning and approaches are seen as methods of addressing the continued labeling and exclusion of socially devalued people, such as people with disabilities, encouraging a focus on the person as someone with capacities and gifts as well as support needs. The self-advocacy movement promotes the right of self-determination and self-direction by people with intellectually disabilities, which means allowing them to make decisions about their own lives.
Until the middle of the 20th century, people with intellectual disabilities were routinely excluded from public education, or educated away from other typically developing children. Compared to peers who were segregated in special schools , students who are mainstreamed or included in regular classrooms report similar levels of stigma and social self-conception, but more ambitious plans for employment. Some expenses, such as costs associated with being a family caregiver or living in a group home, were excluded from this calculation.
People with intellectual disability as a group have higher rates of adverse health conditions such as epilepsy and neurological disorders, gastrointestinal disorders, and behavioral and psychiatric problems compared to people without disabilities.
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Mental Health in Intellectual Disabilities (5th Edition)
A literature review was conducted aiming to understand the interface between the Intellectual Disability and Mental Health fields and to contribute to mitigating. Objectives To investigate general practitioners' (GPs) experiences in managing patients with intellectual disabilities (ID) and mental and behavioural problems. Psychiatric disorders in persons with intellectual disabilities are typically more severe and more difficult to diagnose than in the general.