A view from the other side: Disability Nursing Practice in the future from a

Westmead Children’s Hospital perspective 2016

Janice Jankovic and Gail Tomsic. 2016

Case Study• Child SB age 13 years • Admitted to hospital for generalised seizures and dental

abscess• Diagnosis: global developmental delay ? Autism Spectrum

Disorder • Co-morbities: Agoraphobia / anxiety disorder• Never seen a neurologist and has not had review since early

childhood. Currently home schooled• While in hospital, had to be sedated to preform any medical

management.

Our Patients/Clients

• The Person – needs/wants• Health Status• Community Participation Work• NGO Partners/Families• Funding/Wages• Living Arrangements

Definition of a Nurse

• They are a licensed health-care professional who practices independently or is supervised by a doctor. They are skilled in promoting and maintaining health and work with clients / patients across multiple settings.

(Webster Dictionary. 2016)

• The role of the nurse is constantly changing and developing in response to the health needs of the population, advancements in nursing knowledge and changes in the health care system.

(NSW Nurses & Midwives Association.2015)

Transition to speciality nurseWith the changing demand of disability nursing, a range of skills are being transition across into the health sector from established disability services.

Definition of nurse specialist accepted internationally is the practice of the nurse “prepared beyond the level of a generalist nurse and authorised to practice as a specialist with advance expertise in a branch of the nursing field”

(International council of nurses, 2009, page 6)

Higher levels of education in nursing

Who trains the disability nurse?

.

Development of Professional Nursing Knowledge

Benner/Dreyfus Modelhttp://theclinicalpreceptor.weebly.com/novice-to-expert.html

How is this going to happen We need to build on our nursing skills and target to be more specialist focused in provision of disability specific care.

Professional practice is defined by work which claims access to a specialist knowledge base, autonomous practice and provides a client service. (Eruat 1994)

Identify the change • Professional practice is defined by work which claims access to

a specialist knowledge base, autonomous practice and provides a client service.

(Eruat 1994)

• But where do nurses go to learn this knowledge?

• What do we need to adapt to this change in disability health services?

The new world • Social model Vs Medical Model• Disability nurses find themselves

advocating for the rights of people with a disability to receive medical support by accessing universal services, including health care and promoting the right to full participation.

• These elements form the foundation of reasonable adjustment and inclusion and assist in identifying resources.

• Where does the disability nurse fit in the new structure?????

(Western Australia Department of Health. 2015)

List of legislation • Australian Government ratification of the United Nations Convention for the Rights of Persons with Disabilities (2008)• Aboriginal Policy Framework (July 2005);• Aged Care Act 1997 (Commonwealth); • Anti-Discrimination Act (1977);• Australian Guidelines for the Prevention and Control of Infection in Healthcare (2010)• Child and Young Persons (Care and Protection) Act NSW (1998);• Child and Young Persons (Care and Protection) Regulation (2000);• Common Law Australia (1901)

– Duty of care– Laws in relation to physical and verbal assault– Laws in relation to false imprisonment

• Child Protection (Working with Children) Act 2012 • Carers Recognition Act 2012• Disability Services Act NSW (1993); (pensions)• Disability Services Regulation NSW (2008);• Disability Inclusion Act, (2014)• Declaration on the Rights of Disabled Persons. (1995) • Guardianship Act (1987); • Guardianship Regulation (2010)• Health Practitioner Regulation National Law Act (2009); APHRA• Human Rights and Equal Opportunity Commission Act (1986)• Mental Health Act (2010)• NSW Youth and Community Services Act (1973)• National Disability Insurance Scheme Act 2013• National Disability Insurance Scheme (NSW ENABLING) ACT 2013• Policy Framework: Providing behaviour support services for people with an intellectual disability (June 2006, Reviewed 2008);

Disability inclusion act

• The Act contains general principles which align with the UN Convention and acknowledge the human rights of all people with disability. It also includes principles recognising the needs of particular groups, such as Aboriginal and Torres Strait Islander people with disability, people with disability from culturally and linguistically diverse backgrounds, women with disability and children with disability.

(Disability Inclusion Act 2014)

Who is involved in care delivery

Previous funderADHC Previous Funder

NDIANDIS

NGOHealth

EducationCommunity

Religion

Culture

Nurse Doctor SpeechPathologist

Physio OT Social Worker

Consumer ExpectationConsumer expectation are; • service providers are knowledgeable

about how to assist them in the management of their complex health issues.

• Nurse specialists are often valued for their expertise over generalist nurses.

(Wilkes, Cioffi, Warne & Harrison, 2008)

Juggle roles Develop new skills

Use whole of career and life experience to care in this environment

Chronic Care Models• The CDMP connects the person and their carer with appropriate primary,

community and acute care services by:– Proactively identifying people most in need of and likely to benefit from the

program– Undertaking comprehensive assessment– Supporting shared care planning– Delivering care coordination and self-management support services– Regularly monitoring and reviewing participants

• People in NSW aged over 16 years who have been in hospital or need more support to manage their needs are eligible for enrolment to the program. The target chronic diseases are Diabetes, Congestive Heart Failure, Coronary Heart Disease, Chronic Obstructive Pulmonary Disease and Hypertension, recognising that people with these diseases often have multi-morbidities such as depression, arthritis and dementia.

(NSW Chronic Disease Management Program. 2013)

Chronic Care Model

*source: NSW Chronic Disease Management Program – Connecting Care in the Community (Service Model 2013)

The role of the nurse

Question???• Why isn’t someone with a chronic disability /

Intellectual Disability identified in the Chronic Care Pathway?

Centre of Disease control and Prevention. Retrieved on March, 26th, 2013 from:

(Centre of Disease control and Prevention. 2014)

Health Status With Disability Without Disability Excellent / Very good health

27.2% 60.2%

Good Health 32.5% 29.9%

Fair to poor health 40.3% 9.9%

Health Community Journey

Formatting Interventions

• Foundation Skills for a Disability Nursing:– Communication - augmented– Behaviour – assess and plan– Environment – assessment, placement

and discharge environment• Reasonable Adjustments

(MacArthur, Brown, McKechanie, Mack, Hayes & Fletcher, 2015)

Who Are WeJanice Jankovic

• Started nursing in 1977• Certificate in Psychiatric Nursing• Certificate in General Nursing • Certificate in Child and Family health

Nursing • Bachelor of Health Science (Nursing) • Certificate IV in Work Place

Assessment and training• Diploma in Management• Advance Diploma in Disabilities• Masters in Advanced Practice

Nursing

• Clinical Nurse Consultant

Gail Tomsic • Started nursing in 1989• Diploma in Applied Science

(Nursing) • Bachelor Applied Science (Nursing)• Grad Diploma Paed, • Grad Dip (Nursing Management), • Grad Cert in Lactation in Infant

Feeding • Masters in Community Nursing

(Child & Family, School Health)

• Clinical Nurse Consultant

What makes us Disability Nurses Despite our different backgrounds, we both have the foundation training which is essential for a disability nurse. These are:• Medical care - able to complete a comprehensive nursing assessment, addressing both

the physical health of the patient including the reasons they are presenting for assessment.

• Knowledge of care needs associated with specific syndromes (genetic). Identifying them within the health care system.

• Advanced communication; written, verbal and augmented communication.• Psychological care – ability to complete a behavioural assessment; create a

behavioural plan and implement it. • Able to communicate the needs of the patient across different groups both within the

hospital system and within the broader community.• Awareness of the services that can support patients both within the hospital and

community. • A belief in equity of access, reasonable adjustment and the rights of a person with a

disability . (Annison, Jenkinson, Sparrow & Bethune,1996 Curry.

• Listen to; advocate for and support people with a disability. Peppe. 1978. Nehring 2005, Roth &Morse. 1994). )

Identified Gaps in ServiceMEMORANDUM TO SCHN STAFF 20/9/2016• Response to training requests from external disability support providers.

National Disability Insurance Scheme (NDIS)

• It has been recently reported that private disability support providers (often registered to provide support under the NDIS) have been approaching staff to provide formal nursing and allied health training.

• The Council of Australian Governments Principles to Determine the Responsibility of the NDIS and other Service Systems document states NDIS will be responsible for ‘training of NDIS funded workers by nurses, allied health or other relevant health professionals to address the impact of a person’s impairment/s on their functional capacity and retraining as the participant’s needs change’.

• The Sydney Children’s Hospitals Network is not a Registered Training Organisation and is not accredited to provide this training.

Conclusion

Nurses are travelling along the path of change into a New World.

The generalist/mental health nurse of today need to embrace the speciality skills which form the foundation of

Disability Nurse practice. We are living examples that this can be done.

ReferencesAnnison. J., Jenkinson. J., Sparrow. W. & Bethune. E. (1996) ed. Disability, A Guide for health professionals. Thomas Nelson Australia. Victoria Australia.

Benner, P. (1984). From novice to expert: Excellence and power in clinical nursing practice. Menlo Park: Addison-Wesley, pp. 13-34.

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Centre of Disease control and Prevention. Disability health. Retrieved on March, 26th 2014 from: http://www.cdc.gov/ncbddd/disabilityandhealth/data.html

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MacArthur, J., Brown, M., McKechanie, A.k Mack, S., Hayes, M. & Fletcher, J. (2015). Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in getting it right for people with learning disabilities receiving general hospitals care. Journal of Advance Nursing. Jul;71(7):1552-63. doi: 10.1111/jan.12629

Nehring. W. M. (2005) edt. Core Curriculum for Specializing in Intellectual and Developmental Disability. A Resource for Nurses and other Health Care Professionals. Jones and Bartlett Publishers, London, UK

NSW Nurses & Midwives Association. (2015) Retrieved on June 10th 2015, from: http://www.nswnma.asn.au/about-us/history/

NSW Chronic Disease Management Program – Connecting Care in the Community (Service Model 2013) Retrieved August 20th 2016, from http://www.health.nsw.gov.au/cdm/pages/default.aspx

Roth. S.P., Morse. J.S., (1994). ed. A life-Span Approach to Nursing Care for Individuals with Developmental Disabilities. Paul H. Brookes Publishing Co. Baltimore, Maryland.

Webster Dictionary. (2015) Definition of a nurse. Retrieved on August 10th 2016, from: www.freedictionarydefinitions.com/