1. Psychological Interventions Among People with Intellectual Disabilities and Mental Health Concerns Vivienne Riches & Rachel Dickson vriches@med.usyd.edu.au 3rd IASSID - Europe Conference 20-22 October, 2010 Rome, Italy

2. GENERAL POPULATION  Depression and anxiety affect more than 2 million Australian adults each year  Less than 40% seek treatment in a 12 month period  Only 15% see Psychologist &/or Psychiatrist  Psychological therapies are effective, but not enough therapists + significant barriers to treatment seeking

3. Intellectual Disability Prevalence of ID – 1.8% of population (AIHW, 1998) Prevalence of ID – 1.8% of population (AIHW, 1998) Increasing life span - 55-65 years Increasing life span - 55-65 years Higher risk of physical and mental health problems Higher risk of physical and mental health problems Majority live in the community Majority live in the community with families / supported accommodation with families / supported accommodation Access generic health services Access generic health services

4. Dual Diagnosis 20% to 35% of all non-institutionalised persons with intellectual disability are diagnosed as having both an intellectual disability and mental illness 20% to 35% of all non-institutionalised persons with intellectual disability are diagnosed as having both an intellectual disability and mental illness Compared to 15 to 19% of the general population who meet the criteria of mental illness as defined by the American Psychiatric Association. Compared to 15 to 19% of the general population who meet the criteria of mental illness as defined by the American Psychiatric Association. (American Psychiatric Association, 1995; Einfeld & Tonge, 1991; 1992; Iverson & Fox, 1989; Menolascino & Stark, 1984)

5. Prevalence: mental health problems 41% have a mental health problem 41% have a mental health problem Einfeld & Tonge (1996) Schizophrenia/delusional disorder Schizophrenia/delusional disorder 3 times higher than in general population 3 times higher than in general population Depression Depression 3 times higher in people with Down Syndrome 3 times higher in people with Down Syndrome Dementia Dementia 4 times more common than in general population 4 times more common than in general population

6. Types of mental health disorders Same range as in general community Same range as in general community Some specific associations Some specific associations Down Syndrome - depression, Alzheimer’s disease Down Syndrome - depression, Alzheimer’s disease Fragile X syndrome - anxiety, autistic behaviours Fragile X syndrome - anxiety, autistic behaviours Prader Willi Syndrome - psychosis, OCD Prader Willi Syndrome - psychosis, OCD Other problem behaviours/challenging behaviours Other problem behaviours/challenging behaviours Epilepsy common co-morbid condition Epilepsy common co-morbid condition

7. Differential diagnoses Organic causes Organic causes physical illness, pain, effects of medication physical illness, pain, effects of medication e.g. GORD, middle ear infection, sleep apnoea, psychotropics e.g. GORD, middle ear infection, sleep apnoea, psychotropics Psychiatric disorders Psychiatric disorders Behavioural phenotypes Behavioural phenotypes e.g. Prader Willi Syndrome e.g. Prader Willi Syndrome Environmental Environmental lack of choice, change in routine, frustration lack of choice, change in routine, frustration Life events - grief, loss, abuse Life events - grief, loss, abuse

8. Clinical Presentation May be different to that of general population (especially if severe/profound disability) due to: May be different to that of general population (especially if severe/profound disability) due to: reduced cognitive abilities reduced cognitive abilities communication difficulties communication difficulties high prevalence of co-morbidities high prevalence of co-morbidities Some atypical clinical presentations Some atypical clinical presentations aggression aggression self injurious behaviour self injurious behaviour non compliance non compliance loss of skills loss of skills

9. NSW DD Health Unit Statewide consultative health service Statewide consultative health service Located at Royal Rehab Centre Sydney Located at Royal Rehab Centre Sydney Part of CDS Part of CDS Operates 2 days per week Operates 2 days per week Medical & psychological services for adolescents and adults with ID Medical & psychological services for adolescents and adults with ID Specialized clinics Specialized clinics Training & research in collaboration with CDS Training & research in collaboration with CDS

10. Unit staff 2009-2010 Consultant Medical Officer and Lecturer Two Visiting General Practitioners with expertise in developmental disability medicine Two Psychologists Visiting Rehabilitation Physician Visiting Professor in Rehabilitation Medicine to conduct Ageing and Dementia Clinic General Practice Registrar Clinic coordinator / Data base manager..

11. PERFORMANCE INDICATORS The DDHU operated for 48 weeks over the 12 month period July 2009- June 2010 Total 866 consultations provided 225 new patients 641 review consultations (clinic and outreach)

12. Mental Health Conditions in new medical patients 2009-10 Anxiety29 Depression 16 Obsessive Compulsive Disorder/obsessive behaviour12 Schizophrenia/schizoaffective disorder12 Attention Deficit Hyperactivity disorder 4 Bipolar disorder 1 Significant behaviours of concern80

13. 2009-2010 Psychology clients N=90 N% GenderMale4044 Female5056 Age range< 20 yrs89 20-29 yrs3337 30-39 yrs1517 40-49 yrs2123 50-59 yrs 60-69 yrs 8585 9696

14. Psychology clinical sessions 2009 93 sessions 2010 110 sessions

15. Referral Source (N=90) Referral Source N % Service provider Group home2932% NSW DDHU GP2224% Employment/TTW program1416% Parent/family1416% Other e.g. Case manager, guardian, advocate 910% External GP22% Total90100%

16. Reason for Referral*N% Abuse (sexual, physical) 88% Anger 1313% Anxiety & OCD 2424% Behaviour of concern 1111% Depression 2121% Disability Assessment 22% Grief 77% Moral Development 44% Psychosis - schizophrenia 22% Social/ relationships 44% Obsessive slowness 33% Total (* multiple reasons accepted ) 99100%

17. Psychological Interventions Cognitive Behaviour Therapy (CBT) Cognitive Behaviour Therapy (CBT) Relaxation techniques - scripts, tapes, exercises for physical and mental relaxation Relaxation techniques - scripts, tapes, exercises for physical and mental relaxation Anger control, anger bank work …. Anger control, anger bank work …. Recording - Mood diary, & activity level, self monitoring, behaviour charts, token economy Recording - Mood diary, & activity level, self monitoring, behaviour charts, token economy Grief & loss – use of memory books & pictures, grief resources, story books Grief & loss – use of memory books & pictures, grief resources, story books Moral development training Moral development training Positive programming Positive programming Risk assessment and trauma counselling Risk assessment and trauma counselling

18. Interventions... Social Stories (individually developed) Social Stories (individually developed) Question books Question books Visuals: weekly schedule boards Visuals: weekly schedule boards Person centred plans/tools Person centred plans/tools Drawing (basic art therapy) Drawing (basic art therapy) Mental Health booklet – what makes me angry, happy, sad, worried + what helps me to feel better Mental Health booklet – what makes me angry, happy, sad, worried + what helps me to feel better

19. Guidelines/wall posters e.g. how to get a good night’s sleep Guidelines/wall posters e.g. how to get a good night’s sleep Attending staff meetings (at NGOs) to promote consistency Attending staff meetings (at NGOs) to promote consistency Training & support to parents / carers Training & support to parents / carers Mediation meetings with family and/or staff Mediation meetings with family and/or staff Referral for sensory assessment Referral for sensory assessment Development of work profile Development of work profile

22. Case study:A Male Male 48 years 48 years Down Syndrome - moderate intellectual disability Down Syndrome - moderate intellectual disability Polite, mild mannered Polite, mild mannered Excellent memory Excellent memory Pt/time open employment Pt/time open employment Referred employment service due to increasing anger Referred employment service due to increasing anger

23. Case A: Strategies Anger measurement Anger measurement Anger bank work - specific incidents Anger bank work - specific incidents Number of rude customers, teased at school, angry father figure Number of rude customers, teased at school, angry father figure Changing channel Changing channel Shielding self when customers angry (Starwars force field) Shielding self when customers angry (Starwars force field) Ongoing staff support Ongoing staff support

24. Case A: Outcomes Reduced anger - empty anger bank Increased ability to cope with customers and daily incidents Improved self acceptance Improved work performance Ongoing staff support and encouragement

25. Case Study: B Male Aged 21 Pt/time supported employment Living in family home with parents Rural environment Referred by local GP and parents Diagnosed depression - on medication Death of neighbour / family friend

26. Case B: Strategies Comprehensive assessment Comprehensive assessment Problem identification > loss of siblings & key relationships Problem identification > loss of siblings & key relationships Increased contact siblings Increased contact siblings Increased activities - home and in community Increased activities - home and in community Pleasant events and activities scheduling Pleasant events and activities scheduling Problem solving & CBT strategies Problem solving & CBT strategies Person-centred planning - holidays and sibling visits Person-centred planning - holidays and sibling visits

27. Case B: Outcomes Improved mood & self confidence Increased communication Increased involvement in daily life Increased activities - surfing Increased family & friend relationships

28. Case study: C Male Aged 31 Autism - non verbal Living in group home 3 - other residents Referred by DDHU GP Self Injurious Behaviour (SIB) Death of father and grandfather Hypervigilance

29. CASE C: Strategies Visual aids - photos, visual resources to work through loss, death, funerals, changes in life…. Memory Book for key persons lost … Rituals and events to celebrate relationships Increased family involvement Pleasant events and person centred planning Relaxation training and social stories Identification toxic relationship = abuse Group home - safety procedures

30. CASE C: Outcomes No further injuries Reduction in medication and no PRN Improved mood Increased activities & interactions - home and community Increased attention & concentration Increased communication -mouthing words

31. Case study: D Young woman 26 years of age Down Syndrome Significant slowing and deterioration in functioning Significant decrease in work performance Significant decrease daily skills Rich fantasy life - preferred to reality

32. CASE D: Strategies Self monitoring esp. night routine- bed time Self monitoring work attendance Problem solving - specific issues Baseline assessment - psychosis Baseline assessment - dementia

33. CASE D: Outcomes Improved night routine No change work routines and times No indication psychosis -medication negative effects No change in fantasy life Continuing deterioration skill level and functioning DEMENTIA?

34. Recommendations Effective partnerships between all service providers and families to enable effective assessment and diagnosis, intervention and support pathways. Effective partnerships between all service providers and families to enable effective assessment and diagnosis, intervention and support pathways. Comprehensive analysis of behaviour utilising industry recognised tools within a multi-disciplinary framework to ensure accurate and timely diagnosis and treatment of mental health needs. Comprehensive analysis of behaviour utilising industry recognised tools within a multi-disciplinary framework to ensure accurate and timely diagnosis and treatment of mental health needs.

35. Strategies and methods to facilitate empowered decision making by clients. Strategies and methods to facilitate empowered decision making by clients. Interventions tailored to the communication and support needs of the individual. Interventions tailored to the communication and support needs of the individual. Use of Person Centred Planning (PCP), Mental Health Care Planning and Positive Behaviour Support strategies. Use of Person Centred Planning (PCP), Mental Health Care Planning and Positive Behaviour Support strategies. On-going evaluation of effectiveness of interventions with clients as partners. On-going evaluation of effectiveness of interventions with clients as partners. Further research and evaluation esp. conditions not responsive to treatment. Further research and evaluation esp. conditions not responsive to treatment.

36. Email: vriches@med.usyd.edu.auvriches@med.usyd.edu.au www.cds.med.usyd.edu.au