Delivering effective mental health services for people with disabilities in the NDIS: we’re starting behind the eight-ball

Brent HaywardSenior Practice Advisor MEd PGDACN(Psych) BN

Mandy Donley Practice Leader MEd PGDACN(MentHlth) RMN

Office of Professional Practice Department of Human Services, Victoria

brent.hayward@dhs.vic.gov.au au.linkedin.com/in/haywardbrent/

The context• 30-40% of people with ID will experience mental illness • People with ID access mental health services proportionately

less than the general population (10 vs. 35%)• People with ID experience a poor standard of care from

mental health services • Challenging behaviour occurs in 7-15% of people with ID• It is disputed whether challenging behaviour is indicative of an

underlying mental illness• Accessible mental health services for people with ID lags

behind internationally accepted practice • Specialist ID mental health services in Australia are

uncommon

Exploring the issue (1)• Determination of models of best

practice in dual disability • Benefits and challenges associated

with implementation in Victoria

1. Issues with access to mental health services for people with ID

2. Current service models3. Core components of service

provision 4. Stakeholder consultation 5. Moving forward in Victoria

http://www.dhs.vic.gov.au/about-the-department/our-organisation/organisational-structure/our-groups/office-of-professional-practice

Exploring the issue (2)

http://3dn.unsw.edu.au/the-guide#.VHKFyDSUfSg

• Developed by Department of Developmental Disability Neuropsychiatry (UNSW)

• Core reference group• National Roundtable on Mental Health of

People with Intellectual Disability • Funded by the Australian Government

Department of Health

1. An overview of intellectual disability mental health

2. Why accessible services are important, the principles that should guide service delivery

3. Practical strategies for inclusive and accessible services and

4. Implications for the service system

Interface of person with ID and mental health

service

NOT accepted for service Accepted for service

Therapeutic serviceDiagnostic overshadowing

Can’t identify symptoms of mental illness

END Chemical restraint

No ID service

A proposed model for access and outcomes for people with ID accessing mental health services

• Reliance upon emergency departments

• Mediation between services

• Lack of guidance, leadership and policy

• Skill and quality of behaviour analysis and intervention

• Limited utility of publically-funded private practitioners

• Medicare billing privileges limited assessment

• Reliance upon private psychiatrists

Interface of person with ID and mental

health service

• … are less likely to seek help for symptoms of mental illness

• … present symptoms of mental illness differently

• Demarcation between mental health and disability services – ‘silos’

• Eligibility for services, arbitrary criteria, labelling as ‘behavioural’

• Chief complaint reflects view of caregivers (Hurley et al. (2003) J Int Dis Res, 47(1): 39)

NOT accepted for service

• Lack of experience in public mental health services

• Lack of specialist knowledge and training

• Multiple obstacles to effective inpatient treatment

• Variability of client information presented to clinicians

No ID service

• A bias negatively affecting the accuracy of clinicians’ judgments about concomitant mental illness in persons with ID (Jopp & Keys (2001) Am J Men Retar, 106(5): 416)

• Long waiting times in unfamiliar environments often exacerbates behaviour prior to, and during consultation

• Lack of training and education of clinical staff

• Chief complaint reflects view of caregivers (Hurley et al. (2003) J Int Dis Res, 47(1): 39)

Diagnostic overshadowing

• Reliance upon diagnostic criteria not developed for ID population

• Unfamiliarity with assessment tools• Inability to verbalise symptoms • Reliance upon cross-sectional

rather than longitudinal assessment • Diagnostic information relayed by

caregivers (Hurley et al. (2013) J Int Dis Res, 47(1): 39)

• Insufficient time allotted for consultation

• Detailed background and history not made available

• Over-reliance upon (often incorrect or incomplete) history orally reported by direct support staff

• Access to historical and archived files not provided to clinical services

Can’t identify symptoms of

mental illness

• Lack of experience in public mental health services

• Lack of specialist knowledge and training of clinicians

• Ineffective public behaviour intervention services

• Direct support worker knowledge, education and training

• Insufficient implementation of organisational-wide positive behaviour support

• Lack of data presented to prescribers • Subjective interpretations relayed by carers

at consultations• ‘Psychiatric overshadowing’ - attributing

behaviours driven and maintained by environmental contingencies to internal psychological dysfunction (Allen (2008), J of Intell Dis, 12(4): 267)

• Pressure to prescribe medication despite lack of overt psychopathology (Tsakanikos et al. (2007). J Aut Dev Dis, 37: 1080)

Chemical restraint

Chemical restraint • The population of people with ID is regarded as one of the

highest medicated groups in society• Psychotropic medication used as chemical restraint of

persons with ID reported internationally • Little evidence of efficacy (Matson & Neal (2009), Res Dev Dis, 30: 572)

• Not cost effective (Romeo et al. (2009), JIDR, 53: 633)

• Off-label prescribing frequent (Glover et al. (2014) BJP, 205: 6)

• Frequent use of NOS diagnoses to obtain authority prescriptions

• Polypharmacy common (Habler et al. (2014), J Neu Trans, in press; Haider et al. (2014), Res Dev Dis, 35: 3071)

• Adverse effects common (de Leon et al. (2009), Res Dev Dis, 30: 613)

Chemical restraint of people with ID in Victoria

• 90% of restrictive interventions in Victoria are medication for behavioural control (defined as chemical restraint in the Act)

• The widespread use of antipsychotics exceeds the database regarding efficacy, safety and tolerability (Correll (2008) J. Am Acad Child Adol Psych, 47(1): 9)

• A high likelihood of staying medicated over time (Esbensen et al. (2009). J Autism Dev Disord, 39: 1339)

• 77% remain subject to chemical restraint in subsequent years

• Behaviour disorder predicts a higher maximum and mean dose of risperidone than in psychosis (Hayward & Pridding, 2012)

Addressing chemical restraint (1)• 98% prescribed

psychotropic medication (54% of these without mental illness)

• Quality of prescribing (see table)

http://www.dhs.vic.gov.au/about-the-department/our-organisation/organisational-structure/our-groups/office-of-professional-practice

Addressing chemical restraint (2)

• No clinical guidelines in use across Australia

• The Office of the Senior Practitioner (DHS, Victoria) engaged the Royal Australian and New Zealand College of Psychiatrists (Vic Branch)

• A roundtable to discuss the issues of prescribing psychotropic medication to people with ID

1. Identifying available guidelines2. Endorsing guidelines 3. Implementing guidelines 4. Recommendations: World Psychiatric

Guidelines (Deb et al. (2009) World Psychiatry, 8: 181) http://www.dhs.vic.gov.au/__data/assets/pdf_file/0005/757310/Prescribing-psychotr

opic-medication-to-people-with-an-intellectual-disability-Final-Report.pdf

People with ID in the NDIS

• Risks of marginalisation for those with existing complex disadvantage (Soldatic et al. (2014), 1(1): 6)

• Potential problem areas and practical limitations (O’Connor (2014), 1(1): 17)

• Access for those involved with the criminal justice system (Clift (2014), 1(1): 24)

• Hearing the voices of people with ID in the NDIS (Bigby (2014), 1(2): 93)

http://www.tandfonline.com/toc/rpid20/current#.VHLSEjSUfSi

[How to] integrate mental health into the NDIS [for people with ID] • Accreditation and/or registration of providers in the NDIS• Establishing safeguards which at a minimum, meet existing best practice in

Australia (Disability Act 2006 (Vic))• Acknowledge that public mental health services in Australia are generally

not designed to support people with ID• Acknowledge that people with ID are actively excluded from mental

health services • Acknowledge that individual clinicians are generally ill-equipped to

provide effective mental health services to people with ID • Acknowledge that people with ID are often medicated for behavioural

control (chemical restraint), not for therapeutic treatment (National Framework; https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector)

• National mental health policy should adopt established core components for ID mental health services