First of all, I'm very glad to hear from my old collaborator Mohammed Ayub. 

With respect to the question, I think the intellectually disabled (ID) population is poorly served by the psychiatric and medical professions, particularly for persons with co-morbidity of psychiatric and ID diagnoses. My own inclination is that improved education of professionals to expand the populations they serve is preferable to setting up new specialties and trusts to provide services to these persons

Thank you Elliot.

Muhammad

I concur with Elliot. Persons with ID who also have mental illness are not only poorly served in terms of their special needs but often inappropriately hospitalized and more often the subjects of unnecessary involuntary psychiatric evaluations. US emergency responders receive little training in recognizing ID and just assume behavior related to frustration and poor coping is SMI. Those with mild ID often seem to "admit" themselves by telling the physician what they think he/she wants to hear. When admitted those with ID may only marginally benefit from groups and other activities not geared to them. LOS may be longer than average and D/C plans may be hard to implemen because outpatient providers lack training. On top of these factors those with ID are still often felt to be "immune" from suicidality because of their disability and are missed as victims. 

I concur with Elliot and Tony.  To address this issue, we are piloting a new clinical program (Developmental Neuropsychiatry) where Neurodevelopmental specialists and Child Psychiatrists provide integrated care for individuals with intellectual disability and psychiatric issues.  For the pilot, we're focusing on specific genetic disorders, but in the future, we hope to expand to other populations and bring in other providers.  We've had many challenges integrating these two disciplines and working out the kinks of cross-department collaboration, nursing support, etc, but we're committed to making it work since it is such a great need, and we're lucky to have the resources to try this pilot which is probably not true in much of the world.  That said, I'm sure that other institutions must be trying similar efforts; I'd be interested to hear about other efforts in this area.

hello there, my experience here in South Australia is that generic mental health services provide patchy care for this population because the service received comes down to the quality and commitment of the individual clinicians in the community and psychiatrists with interest and willingness to work effectively with these patients.

It is very rewarding working with these patients, because although it can be hard work when the person has a range of behavioural issues related to their help-seeking and coping styles, they teach you a lot about mental health care generally.

As a community mental health workers, I've worked collaboratively with case managers in the disability sector with a lot of perseverance and success. It's got to be a team effort with others and the person and their family. And thinking outside the square to understand the unique ways that their population might express their needs and symptoms. Absolutely fascinating sometimes once you know the signs. I visited a young lady with schizoaffective disorder who didn't have a lot of language skills who would let you know when she was feeling depressed because she would want to visit cemeteries or point them out as you were driving along with her. I visited another young lady with schizophrenia and we made a book of coping strategies together with pictures which she carried around in her bag. The picture on the cover was a lovely one of her and her brother.

Thank you Tony, Dan and Sharon.

Muhammad

Hi,

the key issue is about providing person centred care and addressing the prinicipal presenting needs of the individual. Different areas are organised differently based on perceived need, finances and clinical resources. I doubt there is a one fit all model.

Even in UK where ID services are a recognised entity there is diversity of care based on geography. The various models which exist include -

1. There is some merit in people with ID receiving care in over represented health need areas such as mental health, epilepsy and pervasive developmental disorders. This how ever has the risk of exposing them to a 2 tier service away from mainstream....but if the specialist service is good or better why grumble? Problems arise in outcoming such services and what if they are palpably worse?

2. ID specific needs such as behaviour analysis, communication being met by the core service but for other needs such as mental health, epilepsy etc being main streamed.....as one comissioner I know put it " why should be deny the people with ID the same rubbish care every one else gets" :-).....again there are merits and de-merits. Where there is undoubted specialism in the speciality, lack of awareness of mental cpacity and cognitive issues could impact heavily on the outcomes.

3. No ID specific service - dangerous option as this will lead to ignorance and lack of appetite to make reasonable adjustments for a highly vulnerable population.

I am a big supporter of option 1 which has its evils but I beleive is the least worst of all the 3 choices :-)

In the UK specialist  services for people with intellectual  disabilities and mental health problems are formally  tasked (by government directive) with primarily supporting mainstream mental health services to provide appropriate interventions. However, in practice this is still in its infancy in many  places and  most work is conducted directly with service users or  indirectly through other specialist staff within  an intellectual disability service. My own view is that a combination of both is required - skills  for communicating  and working effectively with people with   ntellectual disabilities are not  that hard to learn,  and being seen within mainstream services  when possible reduces stigma and discrimination. However, at times I think specialist workers directly intervening can be more appropriate / beneficial for  some service users.

Muhammad;

I was really glad to see your thoughtful question as I have been involved in a program that we set up for those with the higher end intellectual difficulties (ID) and the full range of psychiatric disorders. it began in 1985 and was a residential program within what I would call a mainstream facility for those with IDs. I believe that whether in the mainstream or a specialized program the assessment of the clients has been inclined to undershoot their capacity and potential. I certainly agree with those who said that both formats are needed, It is mainly the appreciation of the clients' ability to benefit from a relational psychoanalytic approach to their care and treatment that is usually missing. Also, as Rohit noted above, It is always personalized care that is needed. 

We had the opportunity to develop a treatment program from the ground up and generally speaking, it was designed to provide individualized care and treatment  for this group who had the common ground of having endured the isolation and humiliation of their peers and the various reactions of their parents to their own disillusionment, including several forms of abuse and neglect.  I introduced an object relations model that involved the assessment and treatment of the clients with a recognition of each individual's capacity for relationships (something we might now more accurately designate the capacity for intersubjectivity).

A core treatment plan was developed for each individual and comprised a structural / practical component and an interactive component so that they could experience a systemic approach, at least within the confines of the cottage, to the development of a therapeutic relationship, and thereby an increased capacity for relationships. These plans involved verbal, non verbal, and structural elements geared to the client's capacity at the time. Such an emphasis on the client's experience of empathy appeared to be a critical factor in their progressive movement. We also held therapy groups four times a week for each client who could handle the group encounter, and individual therapy for some of the clients. 

I believe the mainstream has often considered such clients to be incapable of benefiting form relational psychoanalytic approaches due to their level of intellect and lo the frequent lack of psychological mindedness. I think the truth is that psychological mindedness is in part a matter of the undershooting expectations of the therapist and partly the limited development of the capacity for reflective functioning. While this capacity may have varied according to attachment difficulties and possibly organic deficits, the majority of the clients were able to benefit from an empathy centred approach that focused on the the experiences of disruption and repair and affirmation of signs of self development. The therapy groups developed through phases as other groups do and  they became the main frame of reference for each other. 

As Sharon Lawn pointed out, some of the most severely impaired individuals, while being relatively nonverbal, definitely can communicate their relational distress as long as we are open to the task of recognition and their need to be understood reliably.  It is in this way that the self developmental process as noted by Kohut and others can be reactivated. 

Another enormous factor in the program I am describing was the motivation of the residential staff , something emphasized by Joanne,above, and their willingness to learn the concepts of object relations theory and the application of the model not only in formal therapy but in the context of the clients' daily lives.

I was able to apply basically the same model of treatment  based on self psychology / intersubjectivity theory a number of years later within a community based program. ( I must say this program did not occur without conflict from others in the mainstream).

These individuals had normal intellectual functioning but severe psychiatric disorders and had been treated by others in the mental health system as mainly suffering a biological disorder and not reacting to their relational context. Although we did not always succeed, we encouraged the other mental health professionals to participate and implement our relationally focused approach, and again found improvements in the relationship capacity and overall adaptive functioning. The relational impact of all forms of interacting whether  in a one to one informal session, limit setting, guidance, supervision etc. appeared to be critical.

For anyone who is interested in the model, I have a paper on a relational psychoanalytic model of case management posted on my researchgate profile. The theory is discussed in greater detail and clinical illustrations of one day in a schizophrenic client's day is provided. 

Mike Ware

I think that there is little doubt that specialist experience in ID MH improves outcomes for people with emotional and behavioural difficulties and intellectual disability. Consumers are clear in this view. There are too many ways in which mainstream MH services avoid their capacity to help using diagnostic overshadowing or deferring the problems to 'challenging behaviour' when multidisciplinary team work including a psychiatrist evidently has better outcomes.

In Australia, we do not have a recognised subspecialty, but those with a special interest are especially valued. Our mainstream services seldom recognise the value of subspecialty skills. An ideal model has been described of a small subspecialty team that provides outreach to disability services and in reach into the psychiatric services in the Australian Capital Territory, published in Australasian Psychiatry. 2014 Feb;22(1):52-5. doi: 10.1177/1039856213501563. Epub 2013 Aug 30.

The ACT Mental Health Service for People with Intellectual Disability, 10 years on.

Wurth P1, Brandon SA.

Our experience in children and adolescents at the Children's Hospital at Westmead, Sydney, has been to provide a tertiary specialised outpatient service in partnership with Disability Services and the Department of Education. This service has been highly valued in an external review. We don't have a capacity to manage in-patients, but aim to provide prompt outpatient review for complex cases. We work closely with Disability Services and Social Welfare services to keep these cases in their families or in Respite Hostels, sometimes for extended periods. Their flexible and prompt response is critical. This enables the combined behaviour management skills of specialised disability services with the skills of specialist ID child and adolescent psychiatry service. This model works well for those with moderate and severe ID. I am shortly to provide an article on this model and future prospects in the next edition of the journal of mental health for children and adolescents with intellectual and developmental disabilities, an educational resource, available next year from www.schoollink.chw.edu.au.

Other cases have the same access to acute adolescent mental health services as non disabled people. Clearly those with suspected or complex medical or neurological concerns need hospitalisation for access to medical expertise.

David Dossetor, Child Psychiatrist, Sydney

Dr Dossetor

Thank you for your comment. I have practiced in the UK in a place where specialist services are highly developed. I currently work in Ontario where ID psychiatry is not a recognized discipline. I have experience with both the models. The families I see in Ontario they value the specialist input. Developmental service agencies who support people with ID have mixed views about the need for specialist service. Broadly both within the professionals and policy makers there is no support for the specialist services.

Rohit, Ian, Joanne and Mike thank you for your answers. I appreciate contribution to this discussion.

Muhammad