Epilepsy Leader

Susan McDermott


Epilepsy Leader

Person with disability

Review of the National Disability Advocacy Framework
Susan McDermott
Epilepsy Leader

1. Do you believe the current Framework encompasses your vision of advocacy in the NDIS environment? If not, what changes are required?

No, when reading the National Disability Agreement the points listed within the NDPA include the fact that;
Approaches to disability advocacy can be categorised into six broad models being:
• Individual advocacy
• Citizen advocacy
• Family advocacy
• Self advocacy
• Legal advocacy
• Systemic advocacy.
Yet exclude the fundamental step taken within the NDIS, that is the distribution of capital direct to those entitled to the support, to aid them to achieve their stated goals.

Professionally this is referred to as financial planning, the point of reference whereby people confer and discuss their personal needs, goals and aims, and then once all aspects are understood, are costed and prepared in a statement of advice.

A financial strategy is presented to illustrate how much the agreed service/support/social interaction/stated goals will cost to follow through.

Within the NDIS there is no hint, or reference to; needed skills, qualifications, experience, understanding of financial rulings for NPO staff preparing the quotes. This does not comply with basic ASIC standards, and stands out within current compliance rulings which are set to protect people when managing capital.

Will the NDIS monitor who has accreditation, and be able to work with individuals, partners, family members, carers, the Public Trustees within each State to manage designated capital? An example here being the brother of an adult who has inherited capital from his mother’s estate.

The Public Trustee manages the funds, and the brother must apply for access, and has stated that he would prefer to spend the said funds freely for his brother’s well being. Yet he must “justify” any/all application for withdrawal of money from the trust.

I strongly believe we are, yet again, mismanaging the proposed benefits, as the staff of the participating NPO profession do not have the needed accreditation, and not many, (if any) are, like myself experienced financial planners, who have worked professionally despite their physical disability.

2. Are the principles of the Framework appropriate for guiding the delivery of advocacy for people with disability in a changing disability environment, including in the context of the NDIS? If not, what changes are required?

The principles do not fully support the guiding of the delivery, as the management is dominated by legislation, rather than the ethos of direct support.

The NDIS is a Commonwealth benefit, which is needed directly by the people. Why it has to be diluted by State, and Local bodies, before being made available to those seeking support is a major point of concern.

Advocacy is a physical presence to support a personal need, which cannot be ignored by the Federal Government if it wishes to reduce fees and charges paid by those entitled to the support, and directly help those who are entitled to funds.

The needed change is for the Commonwealth Government to administer the management and funding through the DSS, therefore decrease the expenditure, and enable monitoring of the activity first hand.

Compliance for the individual administration done once, not in the traditional layers which decreases the capital distribution. Presently the lobbying by States illustrates the fact those in need are not being directly served. Rather the political leverage is negating capital distribution.

There must be emphasis on Advocates employed across all States, (that is including country areas), as one of the fundamental problems we have is the fact that for example in Northern NSW we do not have representation.

Yet our area has significant unemployed, elderly, and now with the NDIS a worrying number of people coming forward with those who have physical and intellectual disabilities, who will need guidance and direction.

Our area will not be able to support the need for individual referees as there are insufficient Advocates. None who have first hand qualifications or understanding of financial planning. Yet this is the fundamental base of the NDIS.

I strongly recommend that independent Advocates like myself are supported to work directly with people to provide the information, guidance and direction needed to help better understand how the NDIS will work, before it is released. As well as when the support does begin to be distributed.

We need to ensure people are familiar with the steps to be taken within financial planning, so they have direction and control.

I believe in localising the support now, rather than using “visits” of people up to the beginning dates, and specifically aimed at those who will be entitled to the support.

3. Are the outcomes of the Framework still relevant or should different ones be included? If so, what should be included?

The listed points are nominal, in practice even those who provide the needed care are limited by the interpretation of the management of the NPO employer as to the standard of care supplied.

For example, “..to make decisions that affect their lives..” is interpreted by NPO management to mean those receiving care (even though not intellectually able to fully understand the ethos), are allowed to eat whatever they choose.

Employed NPO staff are not allowed to offer guidance, so we have a situation where those receiving support in shared housing are eating pizzas, fish and chips, lollies, bags of crackers and food we would not choose daily, nor offer our dependent children.

Those in care are gaining weight and their family members and carers are frustrated, and would prefer to have them use another fridge, rather than share the current shared food.

The management of the NPO are convinced by an ethos that those in care have the “right” to choose whatever they should “like”, but that choice then contradicts working in the best interest of those in care. For example obesity, diabetes, cholesterol are side affects of an incorrect diet and lack of exercise.

In my former practice I have had clients with an adult son over 10 years ago who would come back from 2 weeks in Respite Care over 10kg heavier.

As stated, there is not sufficient Advocacy in our area, and what little there is, is understaffed to the degree that interviews are held in nearby parks to attempt to meet confidentiality.

People with disabilities experiencing multiple disadvantages, such as physical need for wheelchairs and psychological support are not receiving support in country areas, and so we are seeing suffering. Not only the disabled, but the parents, and carers.

4. Are the outputs of the Framework still relevant or should different outputs be included?

Community education is a need, and importantly representative Advocates to illustrate the fact that we can succeed professionally against all odds.

Speaking from experience our society is still at odds with those who have the epilepsy disease, and I sincerely believe we need to make more public the fact those in our society can and do succeed if we are to stimulate employment.

One of the key motivational factors for becoming self employed was being labeled as “disabled”. Time has not healed this “habit”, and so we need to work harder to build the employment rates, which will mean active canvassing.

We need to introduce from Primary School onwards a better overview of how all those who are not able to actively participate socially can and do have the same needs as others.

We need to work with the Education Department at all levels, and develop not only more teaching support at school, but also more teaching by correspondence, as there are many who are unable to attend due to their physical incapacity.

Indeed we need to work from the ground up, and it is the Advocates who can provide the representational role which can, through the stated direct contact with the Federal Government, report on what is needed, and why.

We do not have satisfactory statistics to use to illustrate to our business world that we are not participating to the proper degree.

Australia is not employing those who have physical and intellectual disabilities.

Advocates can positively contribute to legislation, policy and practice as they directly reflect the peoples’ needs, and that is a key factor which has not been properly addressed since the Social Security support system commenced.

5. Does the Framework identify what is needed in the current and future disability environment? If not, what changes are required?

The changes within the current and future disability environment are important steps which must be addressed in a sociological business like manner.

The presentation of the Framework does not address the needed change, but rather reflects our society’s overview of how we regard those entitled to the NDIS benefits, and the stated goals of how the Framework aims to be managed.

What is needed is specific personal assistance for those who will be entitled to the support, so they in turn will be able to better understand how to not only apply for the needed support.

But manage the capital received, as well as the capital needed for personal living.

A common statement made, is the support of those in need rests the focus of parents, partners and carers. There is not adequate training, nor support to help the total picture. Family stress factors must be included within the proposed support.

A father of two who both have Downs Syndrome (in their early 20s), who sacrificed his career and business acumen to provide the needed care, stated that providing SG contributions on top of the income paid to Carers would help at retirement.

We need to step back and look at the total picture of the family members who have provided the care for those beside us till now. We have significant numbers of people in adulthood in their mid 50s whose parents have supported them till now.

Our ageing population now finds us with parents entering Aged Care, and/or dying and this significant fact must be addressed by ensuring that current estate planning is being reviewed.

Again we must look at the role of financial planners within the proposed scope of support for those entitled to NDIS, and even those who will only be offered Tier II support.

As an experienced adviser who has worked professionally despite a physical disability which worsened as I matured, I can speak from experience when I state how important it is that we look at the total family picture when providing the needed support.

I strongly recommend that Advocacy must include understanding of financial terminology and rulings so we can ensure the support does build the needed independence over time.

At present Advocacy is not included in public contact in country areas (due to the lack of funding), as well as the limited skills, (concentrating on law rather than financial acumen).

There is not any community education in place, nor do we experience clear awareness of disability issues and rights. Indeed I find myself consistently explaining what the NDIS is, and assuring people there is light at the end of the tunnel.

There is a need for social representation, and it must begin soon, else the people who need the stated support will not benefit, rather they will lack the needed confidence, and that is one of the major issues stated within the initial Trial Sites.