Category: A parent’s perspective

Impact of Individualised Funding

Recently my mum was asked to present at a Sylvanvale NDIS information meeting. This is what she had to say and some pics from the presentation below.

Hello everyone my name is Bev Nugent.

I am the mum of Angela who has complex needs, she is non verbal and a wheelchair user. I have been asked to say a few words about the impact of Angela’s individual funding on her lifestyle

So to give a quick overview individual funding has brought about for Angela a flexible person centred approach to her day programme activities . The shift to individualising her supports has liberated her to be included in the community similar to everyone else on a regular basis.

Thus better equality of opportunity to experience the world around her——– in Angela’s case the Opportunity to Experience being the operative words.

The beginning of the successful process started with some general planning and trialling(too involved to go into at this forum)but basically using the concept of

Five Valued Experiences by John O’Brien and Connie Lyle O’Brien which are;

1. Sharing of ordinary places (go places)

2. Opportunity to develop and maintain relationships (know people and see friends)

3. Be somebody (being respected by others and seen as a valued person)

4. Opportunity to make choices (big or small)

5. Opportunity to develop abilities (big or small)

  • NDIS meeting
    NDIS meeting
  • Bev presenting
    Bev presenting
  • NDIS meeting
    NDIS Presentation

 

However, eventually I decided to contact the Person Centred Hotline of Ageing Disability and Home Care for registration for individual funding and relevent information. This led to on going numerous phone calls, emails, and eventually a link up assessment took place. Sometime later after a processing timeframe I  received notification “believe or not” that individual funding for Life Choices had been granted to Angela. I cheered out loud but was somewhat stunned that this had actually came to fruition.

As well– at assessment time I had indicated to the department that perhaps the services of a general case worker after all these years of not having one- maybe would advantageous to give first hand knowledge of other available funding opportunities and any information at this time of change in the disability world and the approaching ndis.

So -yes Angela now has a case worker as well –proving most beneficial.

So moving forward-community connection-with the view of promoting positive recognition while valuing difference of my special young lady was my aim—Angela is now an accepted regular customer who is greeted by name at a local florist,(Flower of Sylvania) given time to choose flowers she wishes to purchase plus of late a further extension of customer experience at Lush Soaps.

The sense of smell is important to Angela so both retailers are perfect for her and as for the retailers —a sale is a sale. In between customer connection, she has increased community experiences from train , ferries, shops ,Nurseries, Royal Easter Show, Centre Point

Tower, Power House Museum and her beloved bowling etc all of which have impacted beautifully on her wellbeing and best lifestyle outcomes –certainly no longer considered a perimeter sitter of traditional day programme activities.

The person centred practice of having the right people (right matching) is paramount. The right people become an ally for supporting someone to have presence in the community and not only require skill and energy of transporting someone with all their complexities in a wheelchair, rain hail or shine but one would hope they would possess and exhibit the understanding of the importance of holding the disabled persons identity in the palm of their hand.

This is especially so for non verbal people. Thus acting as a voice on behalf of the person while promoting social inclusion.

Staff member Pam Turner, is Angela’s community support/communication ally and I publicly thank her for all her effort, especially the photo journey, her willing spirit and her valuing of my special young lady.

Further balance to Angela’s community presence is a home based podiatrist, remedial massage therapist twice a week plus the absolute highlight of a multimedia advocate. Brendan O’Connell introduced Angela to adaptive assistive equipment .

A touch sensitive switch for music video etc and has proved a powerful tool for Angela including her into the digital world. She has learnt cause and effect and it is a delight to watch her actively engaged and expressing joy at her acquired skill.

The whole multimedia intervention setup at home continues to be of most important to and for Angela on a variety of levels-while the attitude of of her advocate being a possibilitarian – has brought about the launching of Angela’s own website — communication to the (enth)“Nth” degree- let me tell you my mind still boggles .

The progressive ongoing intervention from profile, personal identity card, personalised stationary, Youtube , digital planning, reviewing to providing her with what we call a Visual Voice has brought a better understanding of Angela’s day to day life and aspirations.

As Brendan says –this side of Angela wouldn’t usually be seen or heard from in a paper based or written assessment. Way to go—what a recharge this attitude of this man has both for Angela and an ageing mum who still believes in “equality of opportunity for disabled people”

In conclusion- individual funding for Angela means the opportunity to experience ,participate in life, exercise preferences thus reflecting her individual identity.

Everyone is born into a common humanity , yes Angela is different but certainly not less.

A quote by Franklin D Roosevelt sums it all up;

“We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”

Thank you

Ricochet

R-I-C-O-C-H-E-T (ricochet) – Don’t you just love the sound of that word? Meaning rebound, bounce or skip off a surface – to go in another direction…

Let’s start here – Most people who have a disabled person within their family would describe their journey through life as “difficult” to say the least, and even more so when the disability is considered severe or complex. Especially so, if the primary caring role continues through to adulthood.

In connection to myself, I most certainly concur with the following quote…

”Inside every old person is a young person wondering what happened.” Terry Parachet

Nevertheless, all parents want the best for their family, disabled or not and at any age.

As someone who I guess could be considered the “mother from hell”, as I did my ‘darnedest’ to address further options in service delivery for Angela (and her like peers) over the years, but basically there were really no avenues for success.

Sure, a proactive group of us raised funds for equipment, participated on boards and committees in an effort towards better equality for people with the most complex needs, but eventually years went by and we “faded into the woodwork” having put in lots of effort for little result. High needs people are resource intensive and in the disability arena funds are always scarce.

So, one joins the ‘throng’ of what is available and becomes part of (without knowing it at the time and something I’ve learnt since) what’s called “person centred resignation”, and for those interested can take a look at the attached link that I came across, which I found rather informative and I guess somewhat motivating.

http://www.learningcommunity.us/documents/PathwaysPresentation.pdf

Oh, this new word “person centred” (without the resignation) was coming into vogue – person centred planning, person centred approach, person centred thinking, personalisation, individualisation, personalised support, the list goes on and on.

This old brain of mine went into overdrive as I read further…

…individualised funding, commitment to change the way funding is used, seeking different forms of funding, supposedly resulting in greater opportunity and flexible options for disabled people regardless of the level of disability.

Gee, the more I researched (Googled) the more I was hooked on this concept of person centred approach where individualising meant supports would be tailored to each person’s lifestyle aspirations while being mindful of their vulnerabilities.

SEEMED TOO GOOD TO BE TRUE OR TOO FAR AWAY – but I guess I couldn’t shake my old patterning instincts of wanting improvements to Angela’s core existence, let alone aspirations.

The mind boggled somewhat at this person centred approach, which seemed complex in some ways but certainly had a simplicity component.

However, being the proverbial sceptic brought about by past practices endured as a Mum of a person with a severe disability, I had my doubts about the “theory verses practice” side of it all. In other words sounds good on paper, but when it comes to putting into practice a completely different matter.

Nevertheless, I kept being intrigued by what I read, especially Five Valued Experiences by John O’Brien’ & Connie Lyle O’Brien’s 1984-1987.

  1. Sharing of ordinary places (go places)
  2. Opportunity to develop and maintain relationships (know people/see friends)
  3. Be Somebody (being respected by others and seen as a valued person)
  4. Opportunity to make choices (big and small)
  5. Opportunity to develop abilities (big or small)

Feeling valued

All of the above certainly pushed my buttons but hey this Mum now comes under the heading of “ageing” – damn it!

Energy and persistent effort is required for attempting any sort of change (let alone getting individual funding) and as far as I could work out, going from block funding to individual funding was certainly the only way that betterment (personalisation) could be obtained…

A quote I had read kept flashing in front of my eyes…

“With the right support anything is possible”…

 Should I at least try? Yes, why not…

Well, to jump forward, Angela has changed from block funding to individual funding and heavens, this is the way to go for her flexible tailored day programme, with my long term desire of increased community presence for her.

I’ve added to Angela’s week myself, home based remedial massage therapy, a podiatrist and a multimedia advocate for profile and digital inclusion. How empowering for a young lady with complex needs to be part of the digital world.

Angela is so pleased with her autonomy gained with her assistive technology, a pressure switch/button and screen and media configuration. If we go visiting family or friends, the adaptive equipment has to come too!

“E-inclusion” is more than software and equipment, it is practices and the relationship between people, ideas and technology and in Angela’s case, certainly ‘the right person’ with a “possibilitarian” attitude, plus an extraordinary value system towards severe disability….. Brendan O’Connell we acknowledge your commitment and skills with thanks.

Here’s a quote that for me, sums it all up by Rhoberta Shaler, PhD.

RIGHT – action is when the

RIGHT – people do the

RIGHT – thing for the

RIGHT – reasons at the

RIGHT – time.

May I also say with a grin, who would think that Angela’s digital inclusion would actually impact (ricochet) on my own skill base at this time of life, acquiring photo editing skills assisting in part to Angela’s multimedia programme, thus reducing my ‘digital divide’ as well.

“Way to go… it feels almost as good chocolate!!!!!!!”

Individual funding for Angela means the opportunity to experience, participate in life, exercise preferences thus reflecting her individual identity.

In closing one of my favourite quotes by Franklin D.Roosevelt sums it all up…

 “We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”

…Couldn’t agree more!!!!!!!

‘FROM RESIGNATION TO POSITIVE POSSIBILITIES’

That about sums up success!

by Bev Nugent, April 2015.

Seeing the person, not the diagnosis

How cool is the that statement – reminds me of a quote by Jean Driscoll

“Disability is a characteristic like hair colour; it’s not a defining principle.”

H-m-m – it would be cool indeed if life was really that way but one day “MAYBE”……..(I’m not holding my breath)

However, I guess it’s natural to attach a “label” to something people don’t completely understand.

These labels being used to explain behaviours or physical body features, non verbal people, intellectual impairment , spasticity to name a few and becomes the actual “identity” of the person with a disability or sufferer of a medical condition.

Also it would appear a severely disabled person is talked about in terms of deficits and losses, incompetent or an inference of “less than” attitude.

I believe such labels and words send messages to those that hear them – and in doing so – reinforce stereotypes and perceptions that influence attitudes and behaviours. Resulting in frustration in everyday interaction when the medical diagnosis is seen before the actual person and focus remains on deficits without seeing the whole person. No wonder society often shows hesitancy, fear and stigma around people with a disability.

Think about it- really – every person with a disability embodies a unique history along with personal values, preferences, even strengths and abilities.

Of course- I guess, also some people feel fear and vulnerability about the possibility of becoming disabled themselves , so, simply want to push it out of their minds hence perhaps many feel awkward around people with a disability and it is easier to avoid contact.

When you sit and think about it(ie seeing the person not the diagnosis) it actually opens up a minefield of issues. From accessibility, inclusion, the promotion of diversity and so on……

Wonder if designers of clothes ever thought of creating clothes with wheelchair users in mind, with the same flare seen on fashion runways, in fact all aspects of fashion from top of one’s head to soles of one’s feet.?

Further, what about models with disabilities in wheelchairs on the catwalk?

What about in all areas of advertising?.( people with disabilities are consumers).

The media is a powerful source of influence, how many “everyday” advertisements have people with disabilities included in, as the norm? Perhaps the media not only has a great opportunity, but a responsibility, to contribute to changing attitudes towards disability?

The key this writer believes (to seeing the person first not the diagnosis) is that people with disabilities need  to be constantly seen as “part of” and “often”- shifting the perspective before any significant changes of value to occur.

This made me smile, a thought from Mandy Hale, “The Single Woman: Life, Love and a Dash of Sass”……..

 “Consider the fact that maybe…just maybe….beauty and worth aren’t found in a makeup bottle, or a salon, fresh hairstyle, or a fabulous outfit. Maybe our sparkle comes from somewhere deeper inside, somewhere so pure and authentic and REAL… it doesn’t need gloss or polish or glitter to shine.”

So rather than go on about deficiencies, terms people use in the disability arena and expectations aside, but somehow just emphasising that a person any person really does have an identity outside of his or her diagnosis.

Perhaps, a slight shift in how you describe someone with disabilities is the beginning of making the world a place more respectful of everyone.

Impact of individualised funding

Recently my mum was asked to present at a Sylvanvale NDIS information meeting. This is what she had to say and some pics from the presentation below.

Hello everyone my name is Bev Nugent.

I am the mum of Angela who has complex needs, she is non verbal and a wheelchair user. I have been asked to say a few words about the impact of Angela’s individual funding on her lifestyle

So to give a quick overview individual funding has brought about for Angela a flexible person centred approach to her day programme activities . The shift to individualising her supports has liberated her to be included in the community similar to everyone else on a regular basis.

Thus better equality of opportunity to experience the world around her——– in Angela’s case the Opportunity to Experience being the operative words.

The beginning of the successful process started with some general planning and trialling(too involved to go into at this forum)but basically using the concept of

Five Valued Experiences by John O’Brien and Connie Lyle O’Brien which are;

1. Sharing of ordinary places (go places)

2. Opportunity to develop and maintain relationships (know people and see friends)

3. Be somebody (being respected by others and seen as a valued person)

4. Opportunity to make choices (big or small)

5. Opportunity to develop abilities (big or small)

    • Bev presenting
      Bev presenting
    • NDIS meeting
      NDIS meeting
    • NDIS meeting
      NDIS meeting

However, eventually I decided to contact the Person Centred Hotline of Ageing Disability and Home Care for registration for individual funding and relevent information. This led to on going numerous phone calls, emails, and eventually a link up assessment took place. Sometime later after a processing timeframe I  received notification “believe or not” that individual funding for Life Choices had been granted to Angela. I cheered out loud but was somewhat stunned that this had actually came to fruition.

As well– at assessment time I had indicated to the department that perhaps the services of a general case worker after all these years of not having one- maybe would advantageous to give first hand knowledge of other available funding opportunities and any information at this time of change in the disability world and the approaching ndis.

So -yes Angela now has a case worker as well –proving most beneficial.

So moving forward-community connection-with the view of promoting positive recognition while valuing difference of my special young lady was my aim—Angela is now an accepted regular customer who is greeted by name at a local florist,(Flower of Sylvania) given time to choose flowers she wishes to purchase plus of late a further extension of customer experience at Lush Soaps.

The sense of smell is important to Angela so both retailers are perfect for her and as for the retailers —a sale is a sale. In between customer connection, she has increased community experiences from train , ferries, shops ,Nurseries, Royal Easter Show, Centre Point

Tower, Power House Museum and her beloved bowling etc all of which have impacted beautifully on her wellbeing and best lifestyle outcomes –certainly no longer considered a perimeter sitter of traditional day programme activities.

The person centred practice of having the right people (right matching) is paramount. The right people become an ally for supporting someone to have presence in the community and not only require skill and energy of transporting someone with all their complexities in a wheelchair, rain hail or shine but one would hope they would possess and exhibit the understanding of the importance of holding the disabled persons identity in the palm of their hand.

This is especially so for non verbal people. Thus acting as a voice on behalf of the person while promoting social inclusion.

Staff member Pam Turner, is Angela’s community support/communication ally and I publicly thank her for all her effort, especially the photo journey, her willing spirit and her valuing of my special young lady.

Further balance to Angela’s community presence is a home based podiatrist, remedial massage therapist twice a week plus the absolute highlight of a multimedia advocate. Brendan O’Connell introduced Angela to adaptive assistive equipment .

A touch sensitive switch for music video etc and has proved a powerful tool for Angela including her into the digital world. She has learnt cause and effect and it is a delight to watch her actively engaged and expressing joy at her acquired skill.

The whole multimedia intervention setup at home continues to be of most important to and for Angela on a variety of levels-while the attitude of of her advocate being a possibilitarian – has brought about the launching of Angela’s own website — communication to the (enth)“Nth” degree- let me tell you my mind still boggles .

The progressive ongoing intervention from profile, personal identity card, personalised stationary, Youtube , digital planning, reviewing to providing her with what we call a Visual Voice has brought a better understanding of Angela’s day to day life and aspirations.

As Brendan says –this side of Angela wouldn’t usually be seen or heard from in a paper based or written assessment. Way to go—what a recharge this attitude of this man has both for Angela and an ageing mum who still believes in “equality of opportunity for disabled people”

In conclusion- individual funding for Angela means the opportunity to experience ,participate in life, exercise preferences thus reflecting her individual identity.

Everyone is born into a common humanity , yes Angela is different but certainly not less.

A quote by Franklin D Roosevelt sums it all up;

“We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”

Thank you

A mother's experience of individualised funding
Sylvanvale – INFORM Newsletter (Click photo for article PDF)

 

Ricochet

Don’t you just love the sound of that word? R-I-C-O-C-H-E-T (ricochet) – meaning to rebound, bounce or skip off a surface – to go in another direction…

Let’s start here – Most people who have a disabled person within their family would describe their journey through life as “difficult” to say the least, and even more so when the disability is considered severe or complex. Especially so, if the primary caring role continues through to adulthood.

In connection to myself, I most certainly concur with the following quote…

”Inside every old person is a young person wondering what happened.” Terry Parachet

Nevertheless, all parents want the best for their family, disabled or not and at any age.

As someone who I guess could be considered the “mother from hell”, as I did my ‘darnedest’ to address further options in service delivery for Angela (and her like peers) over the years, but basically there were really no avenues for success.

Sure, a proactive group of us raised funds for equipment, participated on boards and committees in an effort towards better equality for people with the most complex needs, but eventually years went by and we “faded into the woodwork” having put in lots of effort for little result. High needs people are resource intensive and in the disability arena funds are always scarce.

So, one joins the ‘throng’ of what is available and becomes part of (without knowing it at the time and something I’ve learnt since) what’s called “person centred resignation”, and for those interested can take a look at the attached link that I came across, which I found rather informative and I guess somewhat motivating.

http://www.learningcommunity.us/documents/PathwaysPresentation.pdf

Oh, this new word “person centred” (without the resignation) was coming into vogue – person centred planning, person centred approach, person centred thinking, personalisation, individualisation, personalised support, the list goes on and on.

Bev Nugent
Bev Nugent (Mum)

This old brain of mine went into overdrive as I read further…

…individualised funding, commitment to change the way funding is used, seeking different forms of funding, supposedly resulting in greater opportunity and flexible options for disabled people regardless of the level of disability.

Gee, the more I researched (Googled) the more I was hooked on this concept of person centred approach where individualising meant supports would be tailored to each person’s lifestyle aspirations while being mindful of their vulnerabilities.

SEEMED TOO GOOD TO BE TRUE OR TOO FAR AWAY – but I guess I couldn’t shake my old patterning instincts of wanting improvements to Angela’s core existence, let alone aspirations.

The mind boggled somewhat at this person centred approach, which seemed complex in some ways but certainly had a simplicity component.

However, being the proverbial sceptic brought about by past practices endured as a Mum of a person with a severe disability, I had my doubts about the “theory verses practice” side of it all. In other words sounds good on paper, but when it comes to putting into practice a completely different matter.

Nevertheless, I kept being intrigued by what I read, especially Five Valued Experiences by John O’Brien’ & Connie Lyle O’Brien’s 1984-1987.

  1. Sharing of ordinary places (go places)
  2. Opportunity to develop and maintain relationships (know people/see friends)
  3. Be Somebody (being respected by others and seen as a valued person)
  4. Opportunity to make choices (big and small)
  5. Opportunity to develop abilities (big or small)

Feeling valued

All of the above certainly pushed my buttons but hey this Mum now comes under the heading of “ageing” – damn it!

Energy and persistent effort is required for attempting any sort of change (let alone getting individual funding) and as far as I could work out, going from block funding to individual funding was certainly the only way that betterment (personalisation) could be obtained…

A quote I had read kept flashing in front of my eyes…

“With the right support anything is possible”…

 Should I at least try? Yes, why not…

Well, to jump forward, Angela has changed from block funding to individual funding and heavens, this is the way to go for her flexible tailored day programme, with my long term desire of increased community presence for her.

I’ve added to Angela’s week myself, home based remedial massage therapy, a podiatrist and a multimedia advocate for profile and digital inclusion. How empowering for a young lady with complex needs to be part of the digital world.

Angela is so pleased with her autonomy gained with her assistive technology, a pressure switch/button and screen and media configuration. If we go visiting family or friends, the adaptive equipment has to come too!

“E-inclusion” is more than software and equipment, it is practices and the relationship between people, ideas and technology and in Angela’s case, certainly ‘the right person’ with a “possibilitarian” attitude, plus an extraordinary value system towards severe disability….. Brendan O’Connell we acknowledge your commitment and skills with thanks.

Here’s a quote that for me, sums it all up by Rhoberta Shaler, PhD.

RIGHT – action is when the

RIGHT – people do the

RIGHT – thing for the

RIGHT – reasons at the

RIGHT – time.

May I also say with a grin, who would think that Angela’s digital inclusion would actually impact (ricochet) on my own skill base at this time of life, acquiring photo editing skills assisting in part to Angela’s multimedia programme, thus reducing my ‘digital divide’ as well.

“Way to go… it feels almost as good chocolate!!!!!!!”

Individual funding for Angela means the opportunity to experience, participate in life, exercise preferences thus reflecting her individual identity.

In closing one of my favourite quotes by Franklin D.Roosevelt sums it all up…

 “We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”

…Couldn’t agree more!!!!!!!

 

‘FROM RESIGNATION TO POSITIVE POSSIBILITIES’

That about sums up success!

 

by Bev Nugent, April 2015.