NDIA Accountability Project

Concern over planned reforms for people with intellectual disabilities

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Attn. Community Affairs Legislative Committee Cc CSSD@ministerial.qld.gov.au

15/05/2024 Dear Committee Members

I am writing to you to express my concern about planned reforms to the National Disability Insurance Scheme (NDIS), as they articulated in The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

I am a Social Worker with over 20 years of experience in the Disability section in Queensland, predominantly working with people with an Intellectual/Cognitive Disability. This bill, in its current form, will only seek to further disadvantage and place at risk, people with an Intellectual/Cognitive Disability.

What we know from practice/is well evidenced academically for people with Intellectual/Cognitive Disability

Vulnerability of people with an Intellectual/Cognitive Disability

  • Abuse – sexual, financial, relational/interpersonal and within systems
  • Struggle within mainstream school or are isolated from mainstream pathways within ‘special’ school system
  • Struggle to find meaningful mainstream employment or are streamed to segregated employment
  • Over-represented within the Criminal Justice system
  • Have poor outcomes across the heath and mental health systems
  • Are highly likely to have a mental health or mental illness co-morbidity due to challenging life experiences
  • As parents, they are highly likely to have contact with the Child Protection Systems and have children removed
  • The complexity and vulnerability of disability is forgotten/ignored as they age
  • Are highly likely to be at risk of factors associated with poverty e.g. poor access to appropriate and affordable housing, appropriate nutrition and basic personal needs.
  • Are generally socially isolated, unless they have a well-resourced and pro-active interpersonal network.
  • Where there are multiple disadvantages interacting in a person’s life, this significantly increases a person’s vulnerability, complexity of presentation and capacity for supports to be able to navigate what support might look like.

Protective Factors for People with an Intellectual/Cognitive Disability

  • Supportive and proactive interpersonal network i.e. freely given relationships
  • Where the proactive interpersonal network reduces in capacity due to age or other life demands or does not exist for a person - support is provided to develop and strengthen new relationships to fore fill this role
  • Singular point of support that can assist with coordination, advocacy and fostering collaboration across multiple aspects of a person’s life/ across systems e.g. Case Manager/Lead Practitioner
  • Roles such as Case Manager/Lead Practitioner work best when they are relationship based with a developmental focus and have workable caseloads
  • Where a person presents with complex needs, time is allowed for crisis management responses as well as support driven by a pace relevant to the individual
  • All formal/paid support in a person’s life are working form an active support model
  • All formal/paid supports are well trained and supervised on an ongoing basis
  • Supports often work best when they are place based, so there is also a deeper understanding of other factors at play in a person’s life e.g. culture, location etc.

NDIS Functioning and Impact on People with an Intellectual/Cognitive Disability

  • NDIS is a complex system to navigate that requires participants to clearly self-articulate and to strongly self-advocate for their own support needs
  • NDIS is a deficit model, not focusing on deficits will see an individual disadvantaged in the system.
  • There is no consistent connection point to the NDIS, people have to tell their stories over and over every time they have contact with the system, which is often retramatising
  • There is a high turnover of staffing within the NDIS sector both with support workers and therapists, people are often having to foster new relationships and retell their story in this context on a regular basis.
  • For those who have Support Coordination – not all Support Coordinators are created equal and therefore they may not receive support with coordination, advocacy and fostering collaboration across multiple aspects of a person’s life/ across systems.
  • The NDIS itself is also contradictory about the Support Coordination role – identifying that the role should assist people to link with mainstream supports while also articulating that this role does not advocate (particularly in the NDIS space). Nor does the NDIS allocate an adequate amount of the time to do this, handing out a phone number is not connection to mainstream supports.

Recommendations

  • Case Management/Lead Practitioner (or another appropriate name) continued to be funded for all people with an Intellectual/Cognitive disability through the Specialist Support Coordination line item. This role will not only assist with navigating the NDIS, it will work to support an individual to reduce their vulnerabilities and develop protective factors.

AND/OR

  • Case Management/Lead Practitioner (or another appropriate name) be funded as a foundational support for all people with self-identifying and/or formally diagnosed presentation that would suggest they have an Intellectual/Cognitive Disability.
  • This foundational service is based within experienced not-for-profit sector organisations i.e. not based in hospitals, schools and other departments (as is proposed for foundational support). As practice experience shows, people with an intellectual disability need support and advocacy within these systems, which would be a conflict of interest which ultimately compromised the needs and rights of the individual. We also know from practice experience, that within these systems people’s needs get overshadowed by the demands of the organisation/system or they get screened out of receiving support, particular those with complex needs.
  • These foundational services while being based in the NGO sector, they also need to be place based or have an existing relationship within a community.

In summary I am writing to ask you to STOP the changes to the NDIS Act (2013) going through until due diligence around Commonwealth government responsibility to disabled people, particularly those with an Intellectual/Cognitive Disability, has occurred.

Regards,

Mischelle Surawski BSocWk