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The 10 guiding principles of
quality health services for people with Intellectual Disability

10 guiding principles underpin the delivery of quality health services for people with ID. They provide guidance around both what to do and how to do it.

The principles are based on the UNCRPD and have been developed through consultation with the Network’s membership, consumers and carers and with health and partner organisations/agencies.

Access to quality healthcare is a fundamental human right.

This was recognised in the UN Convention on the Rights of Persons with Disabilities. The Convention was adopted by the United Nations General Assembly on 13 December 2006. Australia then ratified the Convention on 17 July 2008 and it entered force in Australia on 16 August 2008.

Under Article 25 of the Convention:
Persons with disabilities have the right to the highest attainable standard of health without discrimination on the basis of disability. They are to receive the same range, quality and standard of free or affordable health services as provided other persons, receive those health services needed because of their disabilities, and not to be discriminated against in the provision of health insurance (Article 25).

NSW Health recognises healthcare as a fundamental right. This is expressed in the NSW Health (2011) Your healthcare rights and responsibilities -A guide for NSW Health staff (PD2011_022), page 1.

Access to healthcare is a fundamental right for everyone in Australia. NSW Health provides a range of community and public hospital services. These services are offered in a way that ensures equal access regardless of gender, marital status, disability, culture, religious beliefs, sexual orientation, age or geographic location.

Socioeconomic determinants (such as lack of suitable housing, low income unemployment) impact negatively on health outcomes. People with ID experience these at higher rates than the general population.

In addition to the presence of more complex and chronic conditions which are often associated with the particular disability experienced by an individual, people with ID may not understand when they have a health problem or how to get help. Difficulty in communicating can compound challenges experienced by people with ID when accessing health services.

Many chronic diseases and conditions benefit from early diagnosis and intervention. Early intervention allows preventive care strategies to be put in place which may minimise later impacts.

Many behaviours and mental health problems seen in adults with ID have their origin in childhood and left unmanaged are more difficult to treat in adulthood.

This principle recognises the need for cultural sensitivity in the provision of health supports for people with ID and their intrinsic rights to social inclusion and community participation. This is consistent with the NDS and the NSW Disability Inclusion Act.

This includes support with communication and decision-making which can assist the person to access health services and treatment. It also includes carer involvement in service delivery where this is the wish of the person with ID. Person- centred service provision in the context of family and carers, enables the delivery of supports which are flexible and responsive to individual need and circumstances.

Smooth transition between health services allow for integrated care to be provided to individuals. This avoids the need to retell the story and repeat health histories, avoids disruption to health support and enables efficient transition between services, including between child and adult health services.

Integrated care also supports the capacity of the system to deliver health services as close to home as possible. This can enhance timely access, reduce difficulties associated with transport and enhance follow-up and the involvement of the person’s support network.

Health workers may require training and support to engage and communicate effectively with people with ID. Meeting specific health needs of people with ID may require additional training. Capacity building may be achieved by consultancy support from specialised health services staff and training programs.

Specialised ID health services provide essential expertise in understanding, managing, coordinating and supporting the health needs of people with ID especially where complex and chronic conditions are involved.

They provide expert consultation in the care of individual patients as well as build the overall capacity of mainstream health services to support the health conditions of people with ID.

Health services working collaboratively where a person with ID is receiving disability and/or education services, can make it easier for the person to:

  • access health services, including early detection and treatment
  • establish pathways of care; undertake follow-up
  • achieve positive outcomes in terms of their social participation and/or education.

Quality research, evaluation and data will inform the development of healthcare services for people with ID. NSW Health patient databases require the capacity to identify and monitor services delivered to people with ID. The patient controlled digital MyHealth Record provides a controlled means of appropriately sharing personal information and supporting seamless integration of healthcare support across primary, secondary and specialised care. This requires that appropriate consent mechanisms are in place.