soem aussie families of disabled share oru words read pls everyone

[Guest guest]

here on friday nite i watched stateline coiz a friends mum said to well as i

was watching im think ur taking the words of every disabled persons fams otu

of their mouths thought ud like to c

QUENTIN DEMPSTER: Mistrust, frustration and anger. That's how some carers of

young disabled people view government efforts to help them. When Premier

Iemma first took over the Labor leadership, he promised to make the

disability sector a top priority.

Nearly two years down the track, families and advocacy groups say young

people with disabilities are still missing out. This report from Jenna Hand

was produced by Renata Gombac from the ABC's investigative unit.

PHIL VERNER: 's got an acquired brain injury and uncontrolled epilepsy

as a result of that. He's also got challenging behaviour and a left side

hemiplegia, so he has got limited use of the left side of his body.

JENNA HAND: lives in a group home but today he is enjoying a day out

with his parents.

PHIL VERNER: His behaviour covers quite a range. He goes from being

incredibly affectionate and companionable to having quite extreme behaviour

where he will become violent.

ANN VERNER: has seizures every day. Severe seizures would be once a

week and probably in the last three months he has been hospitalised six

times because of the seizures.

He needs two people to shower him, to give him medicine when he is doing

walking. He needs two people to take him swimming, two people for

hydro-therapy.

JENNA HAND: When young people like leave school, they move into a

program called " Community Participation " . This State Government scheme gives

individuals a set amount of funding each year. The Department of Ageing,

Disability and Home Care pays to service providers who run day activity

centres.

The amount of funding each person gets is calculated according to answers

given in an assessment form that a teacher fills out while the child is

still at school.

PHIL VERNER: The level of funding is based on an assessment and in our view

the assessment was flawed.

JENNA HAND: Statistics obtained from the Department of Ageing, Disability

and Home Care show that of the 1,684 people who were assessed for the

community participation program last year, %22 appealed their allocation.

KRISTINA KENEALLY, DISABILITY SERVICES MINISTER: The University of

Wollongong advises the department that often there needs to be about a %20

adjustment in the decisions that are made following an assessment and that

has turned out to be the case. About %20 of the people who were assessed in

the community participation program wanted to have their case reviewed. That

is quite appropriate.

JUDITH ELLIS, FAMILY ADVOCACY: When you have 1/5th of the group appealing a

decision, it seems to me fairly obvious that the tool was not effective and

the process wasn't effective.

JENNA HAND: Judith Ellis works for Family Advocacy, a state-wide advocacy

group which promotes the rights and interests of people with a disability.

JUDITH ELLIS: I can tell you why I think it is flawed and that is the result

of the many families who have phoned who have actually been through the

assessment process in the last six months or so who found the assessment to

not cover the sorts of issues that needed to be covered.

JENNA HAND: A number of families have told *Stateline* that they believe the

assessment process needs to be changed. Meltzer, mother of Maya,

young adult with cerebral paulsy is one of them.

MICHELLE MELTZER: The assessment tool is a flawed instrument. It's been

designed to cover people with a physical and intellectual and an autistic

disability. It succeeds in assessing none of them because the questions

contradict each other.

I repeatedly said to them, " My daughter is quadriplegic and you have put her

in a funding band that is appropriate for someone who needs prompting with

hygiene. How can you possibly make a mistake that large? It's not a small

mistake, it is a huge mistake. " I never really got an answer to that

question.

JENNA HAND: Service providers are at the front line administering the State

Government's Community Participation Program. 12 service providers who work

directly with disabled young adults in the program have told

*Stateline*they have the same kinds of issues with the assessment tool

as the parents.

However, they were not prepared to discuss their concerns on camera.

JUDITH ELLIS: Service providers by their very nature are dependent on the

government for the funding they receive, so they would probably be quite

reluctant to come into the public forum.

JENNA HAND: The New South Wales State Manager of National Disability

Services, the peak body representing disability service providers told us he

was unaware of their concerns

PATRICK MAHER, NATIONAL DISABILITY SERVICES: The service providers have

certainly not expressed to me any concerns about the assessment process or

the appeals process. They are quite happy with the way it is going because

it is going according to plan. %20 is not an unacceptable figure.

JENNA HAND: The new Minister for Disability Services, a Keneally has

been in the job for less than a month and says so far service providers and

families have not brought the issue to her attention.

KRISTINA KENEALLY: There are some challenges ahead for disability services

but this particular issue, the assessment tool, has not been raised with me.

JENNA HAND: For families unhappy with their initial assessment, the next

step is to appeal, a procedure that many families have described to us as

exceedingly long and frustrating.

For Maya Meltzer, it was five months before the Department of Ageing,

Disability and Home Care, or DADHC, notified her that her appeal was

successful.

MICHELLE MELTZER: Many months passed and many phone calls and other

communications passed. Eventually, they sent another assessor to repeat the

same assessment with the same flawed questionnaire.

I found dealing with the bureaucracy at DADHC infuriating. I think every

parent that I have spoken to has said the same thing.

JENNA HAND: For Vos, the appeals process is now in its fourth month.

MARGARET VOS: But the reality is that if I sat back and did nothing, DADHC

would allow the process to continue on and it would take months and months

for them to make a decision and there's no guarantee that they will make the

right decision in the end.

JENNA HAND: The Verner family lodged an appeal with the Department of

Ageing, Disability and Home Care in July last year. Verner was

reassessed in September and he was notified that the appeal had been

rejected in December, a decision the Verners disputed.

ANN VERNER: We then had a meeting with DADHC managers on January 19th, 2007

and we were told that we would know our outcome in two to three weeks' time.

Three months down the track we are still waiting. I've written to the

minister. I have been to see my local MP. I have rung up DADHC continually

and I get the same response: " We are still working out the report " .

I don't think any parent should be put through what we have been put

through. I've formally complained to DADHC. I don't get any written

responses.

JENNA HAND: Parents also complained about the financial strain that they

face during the appeals process.

MARGARET VOS: , at the moment, is up at the House With No Steps and

DADHC's funding funds four days of the five days that she is there, but not

the entire four days that she is there. We pay for an extra hour in the

morning and an extra hour in the afternoon.

JENNA HAND: The extra care is costing Margaret Vos around $15,000 a year.

But for her daughter's sake, she doesn't feel like she has a choice.

MARGARET VOS: Well, she obviously needs five days a week. She has

exceptional needs because under their own definition is says that somebody

with exceptional needs is somebody who needs assistance with all of their

personal care throughout the whole day.

JUDITH ELLIS: Families have reported that they actually know of people who

have lower support needs than perhaps their own son or daughter but who are

in a higher funding band.

JUDITH ELLIS: Vos gets less than half the funding Maya Meltzer now

receives since her successful appeal. Yet both mothers say their daughters'

disabilities are extremely similar.

MARGARET VOS: Maya has, limited as it is, some form of communication which

doesn't. She can't talk at all, but apart from that, they have a

similar... And Maya also eats natural whereas does not.

JENNA HAND: The parents that *Stateline* spoke to believe that DADHC should

also provide and explanation if appeals are rejected.

PHIL VERNER: We've not had a definitive answer that's come back and said,

" Your appeal's been unsuccessful because... " We've gone back and quoted or

spoken about the guidelines for community access and our reference back to

those guidelines has been dismissed. So it is like as if it is a dead end

process with no feedback to us, no feedback to the service provider and at

the end of the day, he is still only able to access three days of program.

KRISTINA KENEALLY: I think it is fair and reasonable to expect an

explanation as to why an appeal hasn't been successful.

JENNA HAND: It does seem that there may be moves to address some of the

issues relating to the assessment process with the minister telling us that

a review is planned.

KRISTINA KENEALLY: The department regularly reviews the assessment process.

In fact, we will be doing a review later this year.

JUDITH ELLIS: It needs to be changed before the next group of school

leavers. I also think tha the poeple who are still trying to get a review -

that should be resolved very quickly.

JENNA HAND: Yesterday afternoon, the Department of Ageing, Disability and

Home Care advised *Stateline* that they were committed to reviewing the

assessment tool prior to its use for 2007 school leavers.

JUDITH ELLIS: They've listened and certainly we saw them earlier this year

and they listened to our concerns about the assessment process. This was

first raised well over two years ago.

PHIL VERNER: The amount of money the department has spent on reassessing and

defending their situation, they probably could have funded him for two years

at the level that is appropriate for him.

JUDITH ELLIS: If they change it and make it a more reasonable and effective

process, it will dramatically reduce the costs: the cost to families in

terms of the emotional stress and the cost to the public purse in terms of

the appeal process.

MARGARET VOS: It makes you angry and it also depresses you and it makes you

incredibly tired. Being the parent of a disabled person makes you tired

because you have to fight all the time for what they deserve.

QUENTIN DEMPSTER: Jenna Hand and Renata Gombac Reporting. Less than 24 hours

after *Stateline* interviewed the minister, Verner was told that his

appeal had been successful, a year after his initial assessment. The Vos

family is still awaiting the result of their appeal and the minister has

agreed to meet all the families featured in our story to discuss their

cases.

--

stand up and speak up!!!!!!! and dont let the world hold you back just go

for it

[Guest guest]

and when u read this you need to relise a few things me and Maia got the

same funding band shes wrose off than ME but now shes on a hugher band i

should b on the lower one than high also her mum my mum all the mother here

and all the mothers around fight for us wat do they GET NOTHING NOTHING no

matter the disability cp charge or wat it is we all have a hard time and

allways will and as maias mum says no one explains thats what weve all had

probs with and did we all get answers just shows you wat happens if u put ur

faith in the government we face this everyday now northcotts telling me that

if i wanna go on a camp witht e rec sedrvice i need an ot assesment i can

function bettder than the three in that sorty and u no what i can at least

walk shower my self wit help do all that stuff they cant i jsut dotn get the

stuff sometimes i have this feeling that if me and maia decide to go away

with northcott both our mothers r gonna refuse the assesment they will say u

no these girls coz they do and they wiull also tell them to trust them i

just no we were at the same school and her mum used to speak up and say wat

she thought i need theerre to wich was stuff like a class room not sit under

that tree and other stuff stupid its just suupid id like u all to read and c

if you think she is using oru words that we all use on here lol

>

> here on friday nite i watched stateline coiz a friends mum said to well as

> i was watching im think ur taking the words of every disabled persons fams

> otu of their mouths thought ud like to c

>

> QUENTIN DEMPSTER: Mistrust, frustration and anger. That's how some carers

> of young disabled people view government efforts to help them. When Premier

> Iemma first took over the Labor leadership, he promised to make the

> disability sector a top priority.

>

> Nearly two years down the track, families and advocacy groups say young

> people with disabilities are still missing out. This report from Jenna Hand

> was produced by Renata Gombac from the ABC's investigative unit.

>

> PHIL VERNER: 's got an acquired brain injury and uncontrolled

> epilepsy as a result of that. He's also got challenging behaviour and a left

> side hemiplegia, so he has got limited use of the left side of his body.

>

> JENNA HAND: lives in a group home but today he is enjoying a day out

> with his parents.

>

> PHIL VERNER: His behaviour covers quite a range. He goes from being

> incredibly affectionate and companionable to having quite extreme behaviour

> where he will become violent.

>

> ANN VERNER: has seizures every day. Severe seizures would be once a

> week and probably in the last three months he has been hospitalised six

> times because of the seizures.

>

> He needs two people to shower him, to give him medicine when he is doing

> walking. He needs two people to take him swimming, two people for

> hydro-therapy.

>

> JENNA HAND: When young people like leave school, they move into a

> program called " Community Participation " . This State Government scheme gives

> individuals a set amount of funding each year. The Department of Ageing,

> Disability and Home Care pays to service providers who run day activity

> centres.

>

> The amount of funding each person gets is calculated according to answers

> given in an assessment form that a teacher fills out while the child is

> still at school.

>

> PHIL VERNER: The level of funding is based on an assessment and in our

> view the assessment was flawed.

>

> JENNA HAND: Statistics obtained from the Department of Ageing, Disability

> and Home Care show that of the 1,684 people who were assessed for the

> community participation program last year, %22 appealed their allocation.

>

> KRISTINA KENEALLY, DISABILITY SERVICES MINISTER: The University of

> Wollongong advises the department that often there needs to be about a %20

> adjustment in the decisions that are made following an assessment and that

> has turned out to be the case. About %20 of the people who were assessed in

> the community participation program wanted to have their case reviewed. That

> is quite appropriate.

>

> JUDITH ELLIS, FAMILY ADVOCACY: When you have 1/5th of the group appealing

> a decision, it seems to me fairly obvious that the tool was not effective

> and the process wasn't effective.

>

> JENNA HAND: Judith Ellis works for Family Advocacy, a state-wide advocacy

> group which promotes the rights and interests of people with a disability.

>

> JUDITH ELLIS: I can tell you why I think it is flawed and that is the

> result of the many families who have phoned who have actually been through

> the assessment process in the last six months or so who found the assessment

> to not cover the sorts of issues that needed to be covered.

>

> JENNA HAND: A number of families have told *Stateline* that they believe

> the assessment process needs to be changed. Meltzer, mother of

> Maya, young adult with cerebral paulsy is one of them.

>

> MICHELLE MELTZER: The assessment tool is a flawed instrument. It's been

> designed to cover people with a physical and intellectual and an autistic

> disability. It succeeds in assessing none of them because the questions

> contradict each other.

>

> I repeatedly said to them, " My daughter is quadriplegic and you have put

> her in a funding band that is appropriate for someone who needs prompting

> with hygiene. How can you possibly make a mistake that large? It's not a

> small mistake, it is a huge mistake. " I never really got an answer to that

> question.

>

> JENNA HAND: Service providers are at the front line administering the

> State Government's Community Participation Program. 12 service providers who

> work directly with disabled young adults in the program have told *

> Stateline* they have the same kinds of issues with the assessment tool as

> the parents.

>

> However, they were not prepared to discuss their concerns on camera.

>

> JUDITH ELLIS: Service providers by their very nature are dependent on the

> government for the funding they receive, so they would probably be quite

> reluctant to come into the public forum.

>

> JENNA HAND: The New South Wales State Manager of National Disability

> Services, the peak body representing disability service providers told us he

> was unaware of their concerns

>

> PATRICK MAHER, NATIONAL DISABILITY SERVICES: The service providers have

> certainly not expressed to me any concerns about the assessment process or

> the appeals process. They are quite happy with the way it is going because

> it is going according to plan. %20 is not an unacceptable figure.

>

> JENNA HAND: The new Minister for Disability Services, a Keneally

> has been in the job for less than a month and says so far service providers

> and families have not brought the issue to her attention.

>

> KRISTINA KENEALLY: There are some challenges ahead for disability services

> but this particular issue, the assessment tool, has not been raised with me.

>

> JENNA HAND: For families unhappy with their initial assessment, the next

> step is to appeal, a procedure that many families have described to us as

> exceedingly long and frustrating.

>

> For Maya Meltzer, it was five months before the Department of Ageing,

> Disability and Home Care, or DADHC, notified her that her appeal was

> successful.

>

> MICHELLE MELTZER: Many months passed and many phone calls and other

> communications passed. Eventually, they sent another assessor to repeat the

> same assessment with the same flawed questionnaire.

>

> I found dealing with the bureaucracy at DADHC infuriating. I think every

> parent that I have spoken to has said the same thing.

>

> JENNA HAND: For Vos, the appeals process is now in its fourth

> month.

>

> MARGARET VOS: But the reality is that if I sat back and did nothing, DADHC

> would allow the process to continue on and it would take months and months

> for them to make a decision and there's no guarantee that they will make the

> right decision in the end.

>

> JENNA HAND: The Verner family lodged an appeal with the Department of

> Ageing, Disability and Home Care in July last year. Verner was

> reassessed in September and he was notified that the appeal had been

> rejected in December, a decision the Verners disputed.

>

> ANN VERNER: We then had a meeting with DADHC managers on January 19th,

> 2007 and we were told that we would know our outcome in two to three weeks'

> time. Three months down the track we are still waiting. I've written to the

> minister. I have been to see my local MP. I have rung up DADHC continually

> and I get the same response: " We are still working out the report " .

>

> I don't think any parent should be put through what we have been put

> through. I've formally complained to DADHC. I don't get any written

> responses.

>

> JENNA HAND: Parents also complained about the financial strain that they

> face during the appeals process.

>

> MARGARET VOS: , at the moment, is up at the House With No Steps and

> DADHC's funding funds four days of the five days that she is there, but not

> the entire four days that she is there. We pay for an extra hour in the

> morning and an extra hour in the afternoon.

>

> JENNA HAND: The extra care is costing Margaret Vos around $15,000 a year.

> But for her daughter's sake, she doesn't feel like she has a choice.

>

> MARGARET VOS: Well, she obviously needs five days a week. She has

> exceptional needs because under their own definition is says that somebody

> with exceptional needs is somebody who needs assistance with all of their

> personal care throughout the whole day.

>

>

> JUDITH ELLIS: Families have reported that they actually know of people who

> have lower support needs than perhaps their own son or daughter but who are

> in a higher funding band.

>

> JUDITH ELLIS: Vos gets less than half the funding Maya Meltzer now

> receives since her successful appeal. Yet both mothers say their daughters'

> disabilities are extremely similar.

>

> MARGARET VOS: Maya has, limited as it is, some form of communication which

> doesn't. She can't talk at all, but apart from that, they have a

> similar... And Maya also eats natural whereas does not.

>

> JENNA HAND: The parents that *Stateline* spoke to believe that DADHC

> should also provide and explanation if appeals are rejected.

>

> PHIL VERNER: We've not had a definitive answer that's come back and said,

> " Your appeal's been unsuccessful because... " We've gone back and quoted or

> spoken about the guidelines for community access and our reference back to

> those guidelines has been dismissed. So it is like as if it is a dead end

> process with no feedback to us, no feedback to the service provider and at

> the end of the day, he is still only able to access three days of program.

>

> KRISTINA KENEALLY: I think it is fair and reasonable to expect an

> explanation as to why an appeal hasn't been successful.

>

> JENNA HAND: It does seem that there may be moves to address some of the

> issues relating to the assessment process with the minister telling us that

> a review is planned.

>

> KRISTINA KENEALLY: The department regularly reviews the assessment

> process. In fact, we will be doing a review later this year.

>

> JUDITH ELLIS: It needs to be changed before the next group of school

> leavers. I also think tha the poeple who are still trying to get a review -

> that should be resolved very quickly.

>

> JENNA HAND: Yesterday afternoon, the Department of Ageing, Disability and

> Home Care advised *Stateline* that they were committed to reviewing the

> assessment tool prior to its use for 2007 school leavers.

>

> JUDITH ELLIS: They've listened and certainly we saw them earlier this year

> and they listened to our concerns about the assessment process. This was

> first raised well over two years ago.

>

> PHIL VERNER: The amount of money the department has spent on reassessing

> and defending their situation, they probably could have funded him for two

> years at the level that is appropriate for him.

>

> JUDITH ELLIS: If they change it and make it a more reasonable and

> effective process, it will dramatically reduce the costs: the cost to

> families in terms of the emotional stress and the cost to the public purse

> in terms of the appeal process.

>

> MARGARET VOS: It makes you angry and it also depresses you and it makes

> you incredibly tired. Being the parent of a disabled person makes you tired

> because you have to fight all the time for what they deserve.

>

> QUENTIN DEMPSTER: Jenna Hand and Renata Gombac Reporting. Less than 24

> hours after *Stateline* interviewed the minister, Verner was told

> that his appeal had been successful, a year after his initial assessment.

> The Vos family is still awaiting the result of their appeal and the minister

> has agreed to meet all the families featured in our story to discuss their

> cases.

>

> --

> stand up and speak up!!!!!!! and dont let the world hold you back just go

> for it

>

--

stand up and speak up!!!!!!! and dont let the world hold you back just go

for it