SUBMISSION - NDIS PLANNING

06 September 2019

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

Dear Sir/Madam

I am an NDIS approved plan manager and a counsellor. I am also a freelance case manager and a disability advocate. I volunteer my case management and advocacy hours to support NDIA participants who are experiencing funding issues.

I believe that the National Disability Insurance Scheme is one of the best schemes designed for people with disability in Australia. However, there are significant gaps in the system that are detrimental for people living with disability. It is a major concern that the lack of understanding, expertise and qualifications of planners compromises independence and creates barriers to access dignity and acceptable means of living.

Many disabled participants are not aware of their entitlements and are too afraid to challenge the planner’s decisions. Consequently, the majority of participants accept what the planner approves and live a very challenging life. They constantly worry about their personal wellbeing and the future.

Lately, I have noticed many gaps and inconsistencies in plans I have reviewed. As a result, I am dealing with at least 1 to 2 requests for help per week.

My professional experience with planning gaps include:

• Wheelchair bound participants with no assistive technology or wheelchairs on their plan;
• Participants with severe disabilities without adequate support hours;
• Children with permanent disabilities without adequate funding for ongoing therapy;
• Participants with severe disabilities without adequate funding for therapy;

• Substantial funding cuts during the annual review process for children with permanent

disabilities; and

• Major inconsistencies in funding for people with similar needs.

THE EXPERIENCE, EXPERTISE AND QUALIFICATIONS OF PLANNERS

Lack of experience, expertise and qualifications of planners appear to be contributing factors for the inconsistencies in plans I have reviewed. I have seen some clients who are able to function independently who are overfunded and other clients who depend on a carer for basic needs grossly underfunded. For example, a client with a spinal cord injury, paralysed from chest down only had funding for approximately 3 hours of care per day. When I first met this client, he came to see me on a broken wheelchair, he looked mal-nourished, quite run down, shabbily dressed and visibly distressed. He said he is suicidal and once tried to wheel himself in-front of a train. Due to a lack of support he was slowly giving up on life.

Due to impaired hand function, he was unable to attend to his personal care; bowel and bladder management; showers; meal preparation; eating and drinking; laundry; changing the bed linen; changing and adjusting clothing; medication management; and general personal needs throughout the day. All of these tasks are time consuming and require extensive support from a support worker. He was only able to eat one meal per day when the carer was available.

Although his employment goals were identified in his plan, his employment goals were not realistic as he didn’t have funding for community access. He was keen on developing work-related skills to explore employment options.

His shower chair was over 14 years old, the seat was cracked and broken. When sitting in this chair he experienced involuntary spasm, causing his feet and toes to hit the walls and the metal. As a result, he had numerous injuries on his feet and toes.

He had no other support, as his parents are both elderly and have major health concerns including Dementia. Despite this, they were identified as his formal support on his plan. Interestingly, his first plan review request I submitted was declined and the reasons given to him over the phone in his own words “They said if a friend had been helping me out recently during the day that had suddenly moved to a different town they would consider it but because my parents dementia has been a gradual decline over the last couple of years that there has been no ‘sudden’ or abrupt change of my circumstance over the last few weeks that under some section would not be applicable”.

THE ABILITY OF PLANNERS TO UNDERSTAND AND ADDRESS COMPLEX NEEDS

  Even qualified health professionals do not understand all disability experiences. They are

often specialised in a specific area and obtain additional professional development or qualifications if working with a specific population. I believe same principle of specialisation should be applied to planners. For example, a planner with experience in working with autistic children does not necessarily understand the needs of mature adults with spinal cord injury. If the planner was able to understand the complex needs of a person with a high-level spinal cord injury, they would be able to cover all the areas and allocate appropriate funding to live independently and with dignity.

    Planners play a vital role in the decision-making process. They can make or break a person’s

quality of life with their decisions. Unfortunately, people with disabilities have a lot going on in their lives; the last thing they need is to battle with a system designed for their benefit.

PARTICIPANT INVOLVEMENT IN PLANNING PROCESSES AND THE EFFICACY OF INTRODUCING DRAFT PLANS

 Who understands the needs of an individual better than themselves? Lived experience and

person-centred planning is important for people living with disability. The types of disabilities funded by the NDIS are diverse and include intellectual, physical, acquired brain injury, neurological (including epilepsy and Alzheimer’s disease, deafblind (dual sensory), vision, hearing, speech, psychiatric, and developmental delay.

   This is a broad range of disabilities each with their own complexities. For example, not every

person with a spinal cord injury has the same level of function. The higher the level of the injury, the more complex the needs become. Someone with an acquired brain injury may have different physical and psychological impairments.

The extent of a disability varies from:

• mild — where a person has no difficulty with self-care, mobility or communication, but uses aids or equipment;

• moderate — where a person does not need assistance, but has difficulty with self-care, mobility or communication;

• severe — where a person sometimes needs assistance with self-care, mobility or communication; and

• profound — where a person is unable to perform self-care, mobility and/or communication tasks, or always needs assistance.

Sources: ABS (1999) and WHO (1999; 2001).

THE INCIDENCE, SEVERITY AND IMPACT OF PLAN GAPS

  The severity and the impact of the gaps in plans are beyond comprehension. For example,

if someone is paralysed and unable to get around independently, without proper support overnight they could come to serious harm. They are unable to call for help or help themselves in an emergency.

  Some of these participants eat one proper meal for the day while the carer is around. They

have to wait until the carer comes back the next day to: - Eat; - Drink; - Move bowels; - Turn; or - Escape from danger.

Conclusion

      I have heard from some participants that some days they lay in their soiled beds until the carer

arrives the next day to clean up. This affects their skin hygiene, pressure ulcers and also creates psychological distress. I believe this is inhumane and unacceptable in a first world country. Since the funding is spent on much needed care, planners should be more compassionate and understanding about basic human needs. These supports and services are not luxuries for a person with a severe disability.

    In conclusion, I hope the planners will pay close attention to fund reasonable and necessary

supports to help reach goals, aspirations and objectives that will increase independence, increase social and economic participation and broaden the capacity to actively take part in the community as per NDIS guidelines (https://scia.org.au/living-with-a-disability/a-new-spinal-cord- injury/accessing-the-ndis/)

                                   Page 4