Making medicine safer for people with intellectual and developmental disability

Pharmacists have the skills and capacity to support people with intellectual and developmental disabilities (IDD), but often don’t know where to start.

Speak to the person, not their carer

Health professionals, including pharmacists, cite communication problems as a barrier. These are amplified by lack of time, lack of exposure to people with intellectual disabilities, and assumptions around a person’s capacity to understand.^1,2 Assumptions about a person’s capacity to engage are highly prevalent and often erroneous.³ To communicate effectively, speak directly with the person, not to the caregiver. While the caregiver may support the person, provide the answers, and are a good source of information, it is the eye contact that is key. You can also use resources in alternative formats such as “easy read”, which is information provided in simple words, short sentences and pictures, or using video and multimedia.

Support carers

Medicine management has become more complicated with more care provided in the community, leaving disability support workers to navigate health matters and medication management with limited health background or health literacy.⁴ Pharmacists can clarify or explain doctors’ orders; as well as ensure that caregivers, particularly family, look after themselves as well as loved ones. Providing mental health resources is valuable.

Monitor psychotropic use …

Psychotropic medicines are overprescribed in people with intellectual disability, even when considering higher prevalence of mental illness in this population.⁵ Psychotropics are often used in chemical restraint, defined by the NDIS Commission as ‘the use of medication or chemical substance for the primary purpose of influencing a person’s behaviour’.⁶ When used inappropriately it breaches human rights conventions.

… and their adverse effects

Many people with IDD start antipsychotics at a young age and cardiometabolic adverse effects are highly prevalent. Despite this, cardiovascular conditions are under-recognised and under-treated in this cohort.⁷ Recommending an HMR is a great step toward solutions for these high risk medicines.

Advocate for individuals where needed

It is often difficult to define, advocate for, and provide person-centred care.³ Carers often play a role in advocating for the person they support, but confidence in speaking with prescribers and other healthcare professionals can affect their ability to get their message across.^3,9 Pharmacists can support caregivers and people with IDD by providing them with relevant medicines information and empower their decision-making with respect to medicines.¹⁰ Collaborating with other healthcare professionals while fully engaging with the needs and wants of the person with IDD will ensure their voice is heard.

Be guided by the guidelines

There is an increasing number of evidence-based guidelines, recommendations, and training and education resources that can help support care.

Listen to learn

The Department of Developmental Disability and Neuropsychiatry (3DN) has a series of podcasts for health professionals to learn about intellectual disability and co-occurring mental health.⁸

Resources and references

Resources: 

• Medication Review Guide for GPs: A Guide for GPs on the use of psychoactive medications for adults with intellectual disability who present with behaviours of concern”⁸
• “Prescribing psychotropic drugs to adults with an intellectual disability.”⁹
• Joint Statement on the inappropriate use of psychotropic medicines to manage the behaviours of people with disability and older people
• Prescribing psychotropic drugs to adults with an intellectual disability
• www.3dn.unsw.edu.au/education-resources/health-mental-health-professionals/positive-cardiometabolic-health-people-id/responsible-psychotropic-prescribing-people-intellectual-disability-podcasts
• www.accessibility.sa.gov.au/introduction/accessible-communication

References

1. Di Blasi A, Kendall S, Spark MJ. Perspectives on the role of the community pharmacist in the provision of Healthcare to people with intellectual disabilities: Exploration of the barriers and solutions. Int J Pharm Pract 2006;14(4):263–9.
2. Dovey S, Webb OJ. General practitioners’ perception of their role in care for people with intellectual disability. J Intellect Dis Res 2000;44(5):553–61.
3. Watson J. Assumptions of decision-making capacity: the role supporter attitudes play in the realisation of Article 12 for People with Severe or Profound Intellectual Disability. Laws. 2016;5(1):6.
4. Duckworth NJ, Wilson NJ. Medication oversight, governance, and administration in intellectual disability services: legislative limbo. Research and Practice in Intellectual and Developmental Disabilities. 2022:1–11.
5. Government A. Public Hearing 6; Psychotropic medication, behaviour support and behaviours of concern. Sydney; 2020.
6. NDIS Quality and Safeguards Commission. Regulated Restrictive Practices Guide. Penrith, Australia2020.
7. Salomon C, Britt H, Pollack A, et al. Primary care for people with an intellectual disability – what is prescribed? An analysis of medication recommendations from the BEACH dataset. BJGP Open 2018;2(2):bjgpopen18X101541-bjgpopen18X.
8. Neuropsychiatry DoDD. Resources for Professionals Sydney 2022. At: www.3dn.unsw.edu.au/education-resources
9. Erickson SR, Salgado TM, Tan X. Issues in the medication management process in people who have intellectual and developmental disabilities: a qualitative study of the caregivers’ perspective. Intellect Dev Disabil.2016;54(6):412–26.

CHELSEA FELKAI MPS is PSA’s NSW Branch Committee President who has an interest in disability medicines.