Models of Mental Health Care for Adults with Intellectual Disabilities Nick Bouras

1. estia centre Models of Mental Health Care for Adults with Intellectual Disabilities Nick Bouras www.estiacentre.org Models F/25.09.06/VA D06

2. Outline • Concepts and Definitions • Broad International Mapping • Delivery of Services • Evidence based Practice

3. Concepts • Mental health problems indicate the presence of psychopathology: symptoms, signs or abnormal traits • This approach encompass both significant behaviours and clusters of symptoms occurring as part of a mental illness • Challenging behaviour is determined by a combination of what the person does, the setting in which they do it and how their behaviour is interpreted.

4. Operational Definitions • Psychiatric Disorders in people with ID include a spectrum of problems ranging from depression, anxiety, psychosis, personality disorders and any psychiatric diagnosis as described in the international classification systems ICD-10 and DSM IV. • Some also include serious behavioural problems/challenging behaviours requiring psychiatric intervention because of their intensity and or risks related the person with ID or others.

5. Intellectual Disabilities Dual Diagnosis Mental Health MH Problems by Level of ID Severe ID Mild ID

6. Implications of Dual Diagnosis Research has identifies 3 consistent findings • Co-occurrence is common • Associated with a variety of negative outcomes e.g. hospitalisation, exclusion from habilitation programmes etc. • Ineffective and fragmented service systems and delivery of care

7. Broad International Mapping USA: Very few centres Complex insurance cover systems • Ohio • The Rochester Crisis Intervention Model (UAP) • The Ulster County Comprehensive Mental Health Model • N.Y. University • The Greater Boston START Model • Massachusetts specialised out & in patients • The Minnesota Model Crisis Intervention • California

8. Canada: Rapid de-institutionalisationSmall centres individually ledLack of trained psychiatristsMoving towards specialist MH services • The Toronto MATCH Project • Vancouver • Montreal

9. Australia: • Melbourne • GP – Child Psychiatry led • The Victorian Dual Disability ServiceMMH led: specialist consultative-advisory service • Queensland: Specialist MH - GP led • Sidney: Child Psychiatry

10. Asia: Institutional care Hong Kong: Specialist MH service linked to MMH

11. Europe: • MEROPY study Holt et al 2001 • Institutional care • De-institutionalisation programmes • Dutch Regional Advisory and Consultative Service • Emerging services in some European countries without clear trends yet

12. MEROPE EUROPEAN PROJECT: • Implications of current policy not fully considered for PWID & MH • Policy separates ID & MH • Lack of clear policy guidance • Lack of specialist training • Lack of good quality data at clinical & epidemiological level

13. SERVICE SYSTEMS ISSUES • Mainstream Vs. specialist mental health services • Admissions for assessment & treatment • Support services for people with DD

14. CURRENT STATE OF AFFAIRS • Indecision • Ambiguity • Confusion • Demands have increased • Additional clinical services and resources are not forthcoming • Several thousand people with ID and psychiatric disorders have been placed in dispersed facilities out of the place of origin

15. Patterns of services • Diverse • Mix in expertise, staffing levels and funding options • Predictions of service use and need vary according local circumstances and population profile

16. DELIVERY OF CARE ISSUES FOR PWID & MH PROBLEMS • Provided within ID services • Delivered from mainstream mental health services • Specialist MH services either within ID or mainstream MH services

17. COMMON ID SERVICE DELIVERY ID MMH CIDT CMHTS INPATIENTS REHAB CAMHS MH OLDER ADULTS FORENSIC SUBSTANCE MISUSE Communication Functional skills Challenging behaviour Social care MHiID (psychiatrist) Social Services Lead Health Services Lead

18. COMMON ID SERVICE DELIVERY ID • Pros • Commissioning from ID • Cons • Multi purpose –multi function • service for a people with highly • complex needs • Except psychiatrist others have little knowledge and skills for MH care • Isolation - cut off from MMH/ difficult access • Try to provide MH care outside the current MH framework • Confused as a type of CMHT/ • frequent disputes CIDT Communication Functional skills Challenging behaviour Social care MHiID (psychiatrist) Social Services Lead

19. ID INTERFACE WITH MMH SERVICES ID MMH CMHTS INPATIENTS REHAB CAMHS MH OLDER ADULTS FORENSIC SUBSTANCE MISUSE CIDT Communication Functional Skills Challenging behaviour Social care MHiID (Psychiatrist) Social Services Lead Health Services Lead

20. ID INTERFACE WITH MMH SERVICES ID MMH • Pros • Commissioning from ID • Some access to MMH • Cons • Multi purpose –multi function • service for a people with highly • complex needs • Except psychiatrist others have little knowledge and skills for MH care • Try to provide MH care outside • the current MH framework • Confused as a type of CMHT/ • frequent disputes CIDT Communication Functional Skills Challenging behaviour Social care MHiID (Psychiatrist) Social Services Lead

21. SPECIALIST INTEGRATED MHiID SERVICE DELIVERED FROM MMH ID MMH • Communication • Functional Skills • Challenging Behaviour • Person Centred Planning • Health Facilitators • Social care CMHTs AMH CAMHS OLDER ADULTS • MH-ID • Outreach • Admissions FORENSIC SUBSTANCE MISUSE REHAB

22. SPECIALIST INTEGRATED MHiID SERVICE DELIVERED FROM MMH MMH • Pros • Specialist MH service • compatible with other • MH services • Delivered from MMH • within the current • framework • Natural hub • Interfaces with ID and • MMH • Easier access to MMH • Secondary and Tertiary • Cons • Commissioning? • Might become a • Parallel service CMHTs AMH CAMHS OLDER ADULTS FORENSIC • MH-ID • Outreach • Admissions SUBSTANCE MISUSE REHAB

23. WHAT IS THE EVIDENCE BASED PRACTICE ? • “Age of Enlightenment” • Inconclusive • Retrospective reports • Uncontrolled studies • Small numbers of participants • Few examples of systematic descriptive studies • Service users’ and carers’ views • Emerging in the last years

24. RANDOMISED CONTROLLED TRIALS ID • A Dutch study showed reduction in hospitalisation from a service provided by a Community ID Service (Van Minnen et al. 1997) • Intensive case management has shown to improved adaptive functioning in people with ID and mental disorders (Coalhole et al. 1993) • UK 700 study found that people with borderlineIDspent less time in hospital if they received intensive community care (Tyrer et al. 1999)

25. Recent RCTs • Randomised controlled trial comparing the effectiveness of Assertive and Standard Community Treatment in adults with ID in terms of unmet needs, quality of life, symptomatology and cost no substantial statistical differences were found between the two treatments (Martin et al 2005) • However, the results might suggest that the two treatments models we not that different i.e problems with model fidelity. Also small sample • Similar results were reported by another parallel study in west London (Oliver et al. 2005)

26. TOWARDS A CONCEPTUAL FRAMEWORK: MATRIX MODEL LEVEL OF FOCUS TIME DIMENSION Inputs Processes Outcomes National Resources available ‘Visible’ resources e.g. Finances and staff ‘Invisible’ e.g. staff skills, good working relationships Policies The activities which take place to deliver health services Assessment and Treatment models Changes in morbidity and quality of life, both in the population and in individual users Local Service User Moss, Bouras and Holt (2000)

27. Matrix Model MHiID

28. Matrix Model MHiID

29. Matrix Model MHiLD

30. The Right to Quality MH Care Every person with ID should have: • Access to expert assessment leading to: • Accurate and comprehensive diagnosis • Individualised treatment plan: • Delivered at the right time and place and in the right amount • Appropriate support for housing, day time activities, case management etc.

31. Coordinated and Comprehensive MH Care A MH service system for People with ID should provide: • Full access to assessment, treatment and support services • Coordinated, comprehensive and culturally competent delivery of service • Continuity of care • Therapeutic intervention supported by evidence based practices • Pharmacological treatment based on efficacy • Support services for housing, employment when ever possible and leisure activities • Assist in improving independence and quality of life