For Health Professionals
According to the NSW Ombudsman (1) people with a cognitive disability who live in supported accommodation, experience poorer health outcomes and negative hospital experiences. The National Disability Strategy (NDS) has also reported high rates of adverse outcomes (2) for people with cognitive disability. Their carers have told us that they often feel ignored and disrespected when in hospital.
The positive or negative experiences that a person with cognitive disability experiences in a NSW hospital depends largely on effective communication between disability support staff, the disability team leader, hospital staff and community based health services.
The Admission2Discharge (A2D) Together folder was created to facilitate timely transfer of relevant and current information to enable hospital staff to meet the needs of people with cognitive disability and thereby improve their hospital journeys and health outcomes.
Disability Reform
Disability reform has been occurring across NSW and Australia. This includes the implementation of the National Disability Strategy (NDS), the National Carers Strategy (NCS), NSW Disability Inclusion Action Plan (DIAP) and the implementation of the National Disability Insurance Scheme (NDIS).
The Admission2Discharge Project has been developed based on person centred, disability inclusive practices and supported by a range of international, national and local conventions and policies.
Some of the most significant of these are listed below.
The United Nations Convention on the Rights of Persons with Disability
Article 25 of the Convention states that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas;
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
Australia has ratified both the agreement and the protocol. This means it must be incorporated in our laws.
The Disability Inclusion Act 2014
Reform in NSW has included the enactment of the NSW Disability Inclusion Act, 2014. As a result of this change, NSW has developed the NSW Disability Inclusion Plan in 2015.
The plan is the NSW Government’s commitment to identifying and breaking down the barriers which prevent those with disability from enjoying the same opportunities and choices as everyone else. The plan has four focus areas that are aimed at creating long term change and require consistent efforts from government and the wider community. The focus areas are:
- Developing positive community attitudes and behaviours
- Creating liveable communities
- Supporting access to meaningful employment
- Improving access to mainstream services through better systems and processes
NSW Health has developed the NSW Health Disability Inclusion Action plan (DIAP) to ensure the NSW Health system provides equitable and dignified access to services and employment for people regardless of disability. This plan is part of a broader NSW agenda to improve the lives of people with disability and moves us closer to a fully inclusive society for all.
More information is available on the NSW Health website here
A hospital admission for a person with an Intellectual Disability can be a confusing and frightening experience resulting in behaviours that are difficult to interpret and manage by staff who don’t know the person.
This increases the risk that the patient’s presentation could result in missed diagnosis, escalation of behaviours of concern, inefficient use of resources, and increased length of stay, miscommunication between multidisciplinary teams, disjointed discharge planning and disconnection with community resources that could lead to unplanned readmission.
The People with disability and hospitalisation: Challenges and opportunities in NSW, the NDS Background Paper produced by the National Disability Services NSW in April 2014, highlighted these issues.
The NSW Ombudsman is required by law to review the deaths of people with disability in residential care in NSW, and make recommendations to reduce preventable deaths. This is the eighth report to Parliament on reviewable deaths, and focuses on deaths in 2012 and 2013.
As a result, Health policy and guidelines have been developed to improve outcomes for people with a disability when in hospital. These include:
- Responding to Needs of People with Disability during Hospitalisation (2017)
- The Joint Guideline: (GL2013_001) Supporting Residents of ADHC Operated and Funded Accommodation Support Service who present to a Public Hospital
The aims of the guideline are to ensure that staff working in hospitals and disability accommodation support services are aware of their respective roles and responsibilities to people with disability before, during and after transfer of care from hospital and to provide a framework for best practice for health care staff and disability support staff/nurses.
The guideline outlines steps to ensure the admission and discharge process is as seamless as possible, and contains tools to assist with the planning for hospital admission for people with a disability, including the Hospital Support Plan and a decision making escalation process.
Another tool which can assist in the transfer of personal information is TOP 5 which identifies and shares specific, unique strategies to help settle, calm, and personalize care for a person with intellectual disability who may have limited communication and/or challenging behaviours.
Agency for Clinical Innovation Intellectual Disability Network
The Intellectual Disability Network is working to improve the care and health of people with intellectual disability across all ages by providing clinical leadership, research and education as essential elements to enhance the capacity of primary and secondary health services.