Stella Koritsas – Scope Australia
Which of the following statements best describes you?
- I work for a service provider
- I am a researcher or an academic
What matters most to measure and report on as we seek to achieve inclusive and accessible communities for people with disability?
Inclusion of people with disabilities into everyday activities involves “practices designed to identify and remove barriers such as physical, communication, and attitudinal, that hamper individuals’ ability to have full participation in society” [i].
The ‘inclusive and accessible communities’ domain as it currently stands, adequately refers to accessible physical environment and relevant assistive technology (e.g., communication aids and supports) as enablers to participation and inclusion. However, a further factor in a person’s environment that can limit inclusion is the negative attitudes of people towards disability. Attitudinal barriers result in stigma, discrimination, and stereotyping, deny people with disabilities their dignity and potential and are one of the greatest obstacles to achieving equality of opportunity and social inclusion. Negative attitudes create a disabling environment across all domains of the proposed framework. We suggest a strengthened reference to attitudes of others within this domain in particular.
[i] Centers for Disease Control and Prevention (2020). Retrieved https://www.cdc.gov/ncbddd/disabilityandhealth/disability-strategies.html
What is most important to measure and report on as we seek to achieve economic security for people with disability?
Employment is recognised as one of the key determinants of health and wellbeing, however, it is well known that the employment rate for people with disability is substantially lower than for people without disability and almost half live near or below the poverty line. Overall, the economic security domain appears to adequately capture the components of economic security, however, we would suggest that there needs to be a greater emphasis on careers (and career progression), not just employment, and a fair opportunity to pursue chosen careers. In relation to access to housing options, we suggest that in addition to affordable housing and secure tenancy, mention should be made of accessible housing. Last, affordable and easy access to childcare services ought to be mentioned because, for women, it supports those returning to the workforce, and is a direct way of enhancing economic security (e.g., adding to superannuation balances, attachment to the labour market).
As with our comments on inclusive and accessible communities, in order to ensure that people with disability have equal career opportunities as people without disability, discrimination, and the attitudinal and structural barriers that prevent them from gaining meaningful employment must be considered and captured.
What is most important to measure and report on as we seek to achieve health and wellbeing outcomes for people with disability?
It is well established that people with disability experience poorer health and wellbeing related outcomes than those without disabilities. While at risk for the same health conditions as people in the general population, people with disability are at specific risk for secondary conditions that can impact on health status and quality of life.
The outcome domain ‘health and wellbeing’ provides good coverage of what we generally conceptualise as important to this domain. Reference to ‘mental health’ specifically is welcomed as mental health conditions in people with intellectual disability are higher than in the general population, are frequently not recognised or are misdiagnosed and therefore not treated appropriately.
Within the broad domain of health and wellbeing, we would recommend further coverage of the following subcomponents (a) quality of care (competence and knowledge of care providers about disability, person-centered care, person choice and control) (b) accessibility of care (availability of services, access to services, access to telehealth, rights to care, cost of care), and (c) information (information in accessible formats about health topics, services, benefits/risks, complaints processes). Indicators designed to measure the extent to which health and wellness programs address the needs of persons with disabilities should also be considered.
The area of behaviour support should be drawn out specifically, that is, the extent to which people with disabilities are being adequately supported to address the conditions that underlie behaviour of concern
What is most important to measure and report on as we seek to achieve rights, protection, justice and legislation outcomes for people with disability?
This domain should better reflect the obligations Australia has as a signatory to the United Nations Convention on the Rights of Persons with Disabilities. Including reference to people with disability enjoying equal legal capacity as those without disability is required, and taking appropriate measures to provide access to the support people with disability require to exercise their legal capacity. Decision making support is a contemporary way of providing people with cognitive disability with the right support so that their opinions are heard and understood, and to empower them to make decisions regardless of their perceived capacity.
In 2014, some years after the adoption of the Convention, the United Nations emphasised that substitute decision-making was inherently against the principles outlined in the Convention and should be eliminated. The United Nations stated that laws and policies that propagate substitute decision-making, such as guardianship and trustees should be replaced with supported decision-making. It is recommended that the following are included as indicators for this domain: a) a reduction in guardianship and other substitute decision making arrangements, and b) an increase in decision-making support/ supported decision-making arrangements.
In addition, to be free from discrimination and to enjoy equal rights and freedoms as others, also requires that we address the negative attitudes and stereotypes held by the legal community. As such, developing and delivering effective public awareness campaigns is required and ought to be included as a measure
What is most important to measure and report on as we seek to achieve learning and skills outcomes for people with disability?
Within the broad domain of ‘learning and skills’, it appears important to measure and report on the outcomes of policies, practices, and ethos of education systems.
Outcome indicators include experiences in enrolling in education, reasonable adjustments required by the student, inclusion in school and education activities, access to resources/support programs for students with disabilities and positive expectations of the person from educational staff and others. Another indicator is the presence of a safe education system environment, one in which the person is free of restrictive practices, bullying, humiliation, discrimination and/or abuse.
A further indicator is the extent to which a person’s education has helped prepare him/her for the work or role they are doing now or the skills they need to live life to their potential.
We recommend that within the broad domain, these subdimensions are covered.
What is most important to measure and report on as we seek to achieve personal and community support outcomes for people with disability?
If personal and community support domain is meant to capture services that people with disability are likely to access, then it appears to be sufficient, however, it may be more appropriate to name it as personal and community services and supports domain. If it is meant to be broader than formal services that people are likely to need, then revisiting its indicators is necessary. As it stands, the indicators do not seem to capture the informal care and supports that people may draw on and for which we would want to see change (e.g., calling a neighbour or a friend when help is needed, support from family and friends).
Services and supports need to be well coordinated, welcoming, inclusive and safe, as well as accessible. They need to be delivered by professionals who are well trained and knowledgeable in disability, and have positive attitudes. Health professionals are seldom trained in disability, lack confidence in treating people with disability, and often hold poor attitudes towards people with disability which lead to poor outcomes. Certain procedures and systems disadvantage the person with disability even before they access a service (e.g., noise and lighting in waiting rooms, health professionals running late for scheduled appointments). These are all reasons why access to services is important and should address the physical environment as well as processes and systems. Last, person-centred practice is an appropriate approach, however, we suggest family-centred practice as this is the approach that is used for children and young people with disability.
How often would you like to see progress against the outcomes for people with disability in the National Disability Strategy and the National Disability Insurance Scheme reported?
We recommend data be reported annually, which will enable population-level monitoring of progress in achieving outcomes for people with disability and provide service providers with evidence to improve services, such as through focussed efforts targeting specific outcome areas.
Given the multiple dimensions of outcomes measurement, this population-level data would be integrated by service providers with data from a variety of sources e.g., individual outcome measures, customer satisfaction surveys.
Analyses and reporting should determine which individual characteristics or combinations are associated with different outcomes e.g., age, disability type, income. Reporting should also provide some insight into the dynamic links among different indicators.
Is there anything else that you think should be considered when we are monitoring and measuring the impact of activities on people with disability?
With respect to considerations for outcomes measurement, we recommend the following approaches. Foremost, measurement tools must allow for a broadening of self-report by people with a range of abilities so that the voice of people with disability is reflected directly in reporting. Acknowledging there will remain a proportion of people with disability who require others to report on their behalf, tools need to clearly identify who is the source of the information where proxy reporting is necessitated, ensuring that potential sources of bias are understood. Additionally, if it is expected that services will assist with the administration of measures, it is important to ensure that tools are feasible to implement (e.g., practical, require minimal training, low time for administration) so that they do not disrupt service provision. One such measurement system is MiSO, an online app that track outcomes of services across various life domains: https://socialsuitehq.com/product/measuring-impact-service-outcomes-miso-framework-disability-organisations/
Finally we would recommend that evaluation explicitly occur at the level of outcomes (the impact of service or support) rather than outputs (the services delivered by an agency) or process (the way in which services are provided) and that quantitative data be augmented with qualitative information about contextual factors (enablers and barriers) that influence personal outcomes. This set of recommendations is based on our experiences as researchers within a large disability service provider having operationalized a framework for measuring personal outcomes as a result of disability services and supports.