Work and Disability

“When I talk to young ­people living with a disability about their goals and aspirations … (they) invariably ­include contributing in a workplace, to achieve their goals some ­people may need access to ­support services to be able to get to work, other people may need additional training or study for a particular role. “For others, it’s about ­overcoming a current period of ­incapacity and being supported
through employment ­services to secure a job.” Kevin Andrews MP

This statement really rings true to me.

A few months ago, I had a very productive meeting with Michael Sukkar MP and we discussed the issue of the Government making people on the Disability Support Pension (DSP) go get a job. He commented that this was not aimed at people like Miss Chloe, who has a very obvious disability, but more-so at those on the pension who are not really disabled. Those who may have needed support from an accident or such and now are capable of getting back into the workforce, but haven't tried. Those who are deliberately routing the system...and others who could do modified work.

Although I was deeply relieved I wouldn't have to jump through, yet another flaming hoop to get basic support for Miss Chloe, I was also a bit concerned.

I believe (and mentioned this to Michael) that the Government are actually focusing in the wrong area of disability. I believe whilst necessary to go after those people who are routing the system to conform is important, it is not the most cost effective way to reduce the money spent on disability pensions. 

"These people make a profession
out of ripping off the system
and just move on to
another area to rort. "


I actually think the Government would be more productive working with people like Miss Chloe and those mentioned in Kevin Andrews above quote who are desperate to work and contribute financially to our society.

This need to be done through education of the employers and much higher standards within the employment agencies for people with disabilities.

And NO IT CAN'T BE ACHIEVED BY DANGLING CARROTS OR SMACKING THE PLAYERS ON THE WRIST.

Here are some of my own ideas, about how to get people
with a disability into the workforce:


 

"It can be effectively achieved by re-educating society and SHOWING employers what these people are capable of." 

Government  can do this by creating programs or marketing, that make employers aware they actually have a huge new area of employment that will suit many people with an intellectual disability. Many of our youth today are not interested in going through 12 years of education and Uni, to be told they need to sweep floors and stack shelves and to menial tasks.  And many employers are struggling to have these positions permanently filled....These positions are ideal for many people with ID.
 

By changing the structure of how the Government pays the disability employment agencies to a system where they are rewarded for training and achieving longer than 6 week employment for their client and ensuring the fit between employer & employee works.

"By educating non-profit organisations that people with a disability are not great slave labour."





I am sure they feel they are doing the right thing by these people by providing them with something to do during the day and helping their self-esteem, and they are right!!!

BUT, I believe, if they are paying some-one to use the disabled persons services ie:
a customer in a cafe is paying for a meal and the person with a disability brings that meal to them...then surely the disabled person is entitle to some sort of monetary reward?....just like the rest of the population. 

"I confess I get  tired of community organisations 
using people from the disability population 
to enhance their organisations, 
but don't believe they are worth 
any sort of remuneration."

The Government needs to look at ways that

"People who want to work 
and find work are able to work as many hours as they like WITHOUT losing their healthcare card." 







This is a massive fear for many people with disabilities who have medical issues. What happens if I get a job and lose my benefits? I am going to go out on a limb here & say, the healthcare card should be available to ALL people with a permanent disability - just because they have more expensive needs to the general population.
 
By removing this massive fear to MOST families and people with disabilities, you open the way for them to be free to chase their goals of working for money.

“Often it is about finding an employer who recognises the contribution that an individual can make to their business and that employer providing some flexibility to meet the needs of the individual,” Kevin Andrews MP

Kevin Andrews, I believe you are on the right track BUT do you have the courage to investigate any of the above suggestions and reduce the pension through positive and long term steps, instead of changing deck-chairs on the Titanic????

I am more than happy to help, I'll book you in my diary,
Lets get together and work a plan.

www.suedymond.com

We all deserve to be understood.

 'it doesn't matter what people with Ds are called or whether information
out there is right or wrong...
just put your energies 
into loving your child'.
 



I am a member of a few Down syndrome facebook sites - both local and international,
and this statement is a very interesting yet concerning pattern,
and it is one that is growing.

Firstly, I am very capable of loving my child AND learning AND unlearning without compromising that love.

"The more I put into my bucket 
of love & knowledge, 
the deeper my bucket becomes 
& I have never, ever lost any love from continuing to fill it!"




Secondly, for me, the more I learn and then in turn, teach others about Down syndrome, the more I understand Miss Chloe and the more I am able to give her. AND the more others learn to GET HER

Although she is Chloe to me, she also has Ds and that is my reality. I am grateful for my deep acceptance of this fact, as it has enabled me to work and adjust to her peculiarities.

For me, I have had to learn to dual-parent with Chloe.
she operates in 2 modes.

1 - classic Ds & 2 - Classic family-of-origin. For a very long time, I parented from
mode 1 - family-of-origin, cause that was what I knew, but when my girl was in Ds mode...my GOD, was there WAR!!!.

So, I got learning everything I could about Ds personality traits & how to manage them.
My girls actually has a very subtle shift from one to the other and I have learned to notice the signs, and to watch for it.

She has a change in her eyes. From these learnings and my ability to be flexible with my parenting ways, has become much more  of a peacefull person,  and we have much less conflict.

One of the strongest examples of this is when Chloe is in family-of-origin mode, it is possible to reason with her - or at least offer her a consequence and she will think about it & decide if it is worth it or not. 

When she is operating in Ds mode, there is just no reasoning with her AT ALL & she doesn't care about the consequences. I have learned at these times to not go on & on at her, but to give her a little time till she makes the 'shift'. 

I can also sometimes 'shift her' through making her breath deeply & doing a quickie meditation with her. Now had I decided she was 'Just Chloe' and treated her as such, I reckon I would have had a breakdown.


I am finding it fascinating how many opinions there are in the world of Ds around what the 'proper name' is for Ds, and whether there are varying degrees of it. 

Seriously, if the people who live in this 'land' can't agree, 
HOW are we ever going to confidently 
educate the general public????






I am not going to use this blog to air my knowledge , however I want to just get people thinking about how we can possibly expect to demystify Ds in the 21st century, when we can't even find common ground on a few very basic Ds facts??

So, as a wrap-up, it is BECAUSE I love and in my heart truly accept & embrace all of who she is, that I learn as much as I can about the syndrome and try to correct others in the general public & medical profession...

BECAUSE....SHE DESERVES PEOPLE TO "GET HER".

www.suedymond.com

 

Down syndrome - Lets raise the expectations

OK, OK, I have to put my hand up for this one & admit I have been known to 
under-estimate Miss Chloe on maybe more then once occasion!!! 

But I do like to think I have learned from this!!!

From the day she was born, I was determined to do everything in my power to ensure she was the very best Chloe she could be (this was no different with Shannon). I was flapping around in unknown waters, but even then I was amazed at the general idea that people with Ds (Down syndrome) are incapable.

"When a person is diagnosed with carrying a baby with Ds, they are usually counseled to abort. The reasons given are bazaar to say the least: "They will never be happy, They won't ever walk, They won't ever have friends, The will never be able to toilet train, Your friends will be uncomfortable around you, They will never contribute to society. Sadly these are all regular comments.
My Pediatrician informed me Chloe would have the mental capacity of a 6 year old!"
 
I do wonder how a scan can pick up all this amazing information...When I remember - of course it can't...it is the assumptions of ignorant people (yes even many medical professionals are ignorant).

Poor old Miss Chloe has had to prove herself every inch of the way with some people.
My Pediatrician at the time told me she'd never walk....just before she walked into his room behind me..

Same goes for talking, toilet training and many other things. In the end I sacked him,
I needed a team who believed in my child - not bring her down. 
 

"I have made it a mission to seek out the people who will push Chloe and don't have low ceilings and expectations."

Chloe is a lazy person deep down and given the opportunity she is happy to park on the lounge and do very little. I don't give her the choice of staying home or going out with me.
I actually tell her "You have a right to very unhappy about coming BUT you are coming anyway". I find, once Chloe gets somewhere, her attitude changes and she starts to enjoy wherever it is.

She has a fear of failure and HATES learning anything, but as I have learnt over and over with people with Down syndrome

"You can teach them MOST things

BUT you MUST teach them EVERYTHING"

I make it a point to push her through the negativity and fear to to just break each new task into small bites. 

There is nothing that fills my heart more then seeing the look of enormous pride on that girls face when she accomplishes and conquers. 

It tells me that feeling the pull to rescue her and do it myself or to give in to her whinging or performing is absolutely the least loving thing to do for her, as the gift of enablement can only be achieved by allowing her to do for herself.

I have found that some of the worst offenders when it comes to placing low expectations on people with disabilities are the people who have been trained in disability. I actually wonder what it is in the training that has gone amiss to have sooo many people coming out with such preconceived ideas..... 

I tend to hire people completely outside the disability field to work with Chloe on things like Personal Training, swimming, creativity and many other things. They just don't seem to go in with the idea of what she can't achieve.

As I mentioned at the top of this article, I am guilty of underestimating Miss Chloe.
Every year, I set one or two new leanings to be achieved within that time-frame. Every single one of them has been learnt - not only withing the time frame BUT within weeks of us starting!!!

 ONE BIG LESSON FOR ME IS 

 "When I Believe In Some-one and teach them to do something,
I have given that person their greatest gift."
 

THE GIFT OF SELF-ESTEEM.

 

www.suedymond.com

Disability doesn't mean denying dreams.

"I HAVE A DREAM!
Horse-riding, kombiing through Central Aust, safari in Africa, helping people in need, seeing lots of the world...."





Oh hang on that's MY dream...not my children's dream.....

If there is one thing I find very strange about many people when they have children is they often inadvertently place their own dream and aspirations onto their children.

I know my parents did this for me & because their dreams were nowhere on my radar of life, they are disappointed in me and nurse some very ripe resentments.  

"I vowed I would never put that pressure on my children and I believe I have been pretty successful in that department. One of my biggest dreams was to have at least  or (preferably both) of my kids to have the same passion for horse riding as I do.."

NEITHER..of them have ever been the slightest bit interested...
and I pushed hard before realizing I was trying to get them to live my dream.


Shannon (my eldest)has always dreamed of travel and helping others less off than her. Yes, these are also my dreams BUT that is where the similarities end. 

I want to do these things with some ...OK...many creature comforts. Shan, on the other hand loves roughing it and getting down and dirty. She has no interest what-so-ever in money and only wants enough to get by with.

In one way, I may well be partly responsible for her love of travel, as I bundled her into a Kombi van when she was 18months old (not even toilet trained) and headed off into the sunset, wandering around this fine land we call Australia.

"When Miss Chloe arrived in this world, I had big dreams of her being fully integrated & becoming independent."



Well, I am here to tell you, when it came to 'never having any child of mine attend Special School', I had to completely back down.

I was guided by some amazingly wise people who knew not to tell me things straight out, but to plant a seed and let it develop.

I got permission to have Chloe out of school an extra year. My thinking was, she would be more mature and better able to manage school with an extra year in kindergarten.

When school shopping, it was gently suggested I just 'have a look at' the 2 special schools in my area. For whatever reason, I did and what I found astonished me!!! 

The physical environment was inviting and beautiful. The principal and staff were friendly and interested... not only in me but in Chloe as well. Oh my God...they even spoke to her!!! This rarely happened with the mainstream schools.

 They had high expectations of the students and they had the extra specialists
(OT, Speechy, PT etc on staff). Chloe didn't need to compete with the mainstream kids with education, but she needed to socialize with them, so I integrated Chloe into mainstream holiday programs and other social activities. She had/has the best of both worlds.

After a very long argument with my ego, I bit the bullet and sent her there. For a short while I felt like a loser, a traitor, a failure and was embarrassed to tell people where she went.

This was only for a short time because Chloe not only settled in beautifully, she shone and over exceeded everyone expectations!!!

Chloe loves being in an environment with like minded people and I know now she would not have flourished in mainstream school.

She had a dream of driving. Well this did not make me feel warm & fuzzy, but I zipped my lips and decided to make her dream work for both of us.

"Miss Chloe is not a great reader,
so I bought her the Learners manual
and told her she has to be able to read
easily to be able to drive.
Over time, she decided
she Don't want to drive,
because she can't see well. 
But man, did her
reading & writing improve!!!"

  

"Another dream She had was to become a hairdresser. I bought her a hairdressing 
practice head for her 21st and her would 
do all sorts of amazing styles with it."
 

I have come to realize, as time has gone on that  I need to be listening to what my children say to me and encouraging them with their dreams...no matter how bazaar or uncomfortable it is for me.

I always said Chloe would NEVER work in a supported employment environment...well...Chloe WANTS to work in a supported environment. 

My reality is I don't have a right to force her to live by my goals and expectations. I have a moral duty to support and encourage her to live and achieve (or not) her own dreams.

One of my dreams is to drive around the outback. Chloe and I did a drive a few years ago & I was bluntly informed by her that she is a city girl and doesn't want to do any more...I can do it on my own....

The one dream Chloe and I share is her dream of living on her own, with her friends and we started working towards that one when she was born.

"After all isn't raising children all about teaching them to chase their dreams and feel great about themselves? I am very proud to say, Chloe is definitely in the above category and makes all my dreams come true"

 

 

www.suedymond.com

 

 

 

 

 

Carers stand and be proud

Yes, that means you struggling with your disabled young one and going cap-in-hand to a respite service & being told, there are people out there worse off then you and you should be lucky for the scraps we throw your way.






WELL NOOO, I AM NOT GRATEFUL.

 In fact not only am I not grateful - I think the Government, services & others need to be grateful for me and the job I am doing!!!!!

I gave up a well paid job to purchase a business 12+ years ago, because our Government didn't provide childcare to families once the children go to high school.
Not even to special needs children.
 

This left me, as a single mum of 2 children, with 3 options:




1. Continue working at my job & leave my 12yo Miss Chloe (who has Ds)
    home alone for up to 4 hours.

2. Go on the Carers pension full time (and live below the poverty line)

3.  Find a way to work from home.

I chose option 3 & have been fortunate enough to have had my little business for 12+ years now. This option has given me the opportunity to be home for my children BUT I have never, ever made near the money I was making in the work force. 

"This year, including everything,
I have made under $30,000."

Now I ask anyone out there.....would you look after my special needs child full-time (including feeding, taking to recreational things, holidays, clothing....EVERYTHING for $30,000?

 



The obvious answer is NO!! No-one would do the job carers do for approx $25500 PA
(the pension) YET people seem to think carers are sucking the life out of society.
Think again, peoples...we actually save the Government & everyone
approx $10 million a year in Victoria ALONE!!!

"Sadly for us though, we are treated like a pest and leech by most services."




I was informed by the Guardianship board when Miss Chloes dad killed himself that "CARERS ARE CONSIDERED GUILTY TILL PROVEN INNOCENT".
The reason being that SOME carers do the wrong thing by their disabled loved one. 
Now I don't disagree with this...carers are part of the human race & yes, there are some unsavory characters amongst us (as there are with everyone) BUT why is it that, some non carers who do bad things in society - are considered INNOCENT TILL PROVEN GUILTY????

I am not the Lone Ranger when it comes to asking for basics, just to be told that I am not desperate enough & I 'look like' I am doing fine...and "there are people out there worse off them you." WELL REALLY, I am fully aware there are people out there worse off then me BUT I can promise you, if I don't get some kind of help, I will be one of those WORSE off people. 

Is this truly the way we should go?

Only assisting in crisis only
creates more crisis
and much more cost
to society in every way!!!





I am exceptionally proud of the job I have done & do with my girl, with absolutely no family support. I will never ever accept anyone telling me I am not entitled to assistance or I don't deserve, because I KNOW I am an amazing human being, doing an amazing job helping my girl be the very best person she can be.

CARERS UNITE AND STOP LETTING SOCIETY TELL YOU HOW GRATEFUL YOU SHOULD BE FOR NOTHING!!!!!

WE ARE THE HIDDEN HEROES OF THE WORLD....AND I DEFY ANYONE TO PUT THEIR HAND UP TO BE PAID $25,000ISH PER YEAR FOR A 24/7 JOB!!!!!!

HERE LIVES ONE PROUD & PASSIONATE CARER!!

www.suedymond.com

 

Ignorant assumptions around Down syndrome

There are times when the medical professionals make my blood boil..with the things they say or assume, when you say your young person has Ds!!!!






Today has been on of those times.
 I had to take Miss Chloe off to s specialist in diet & nutrition. She is absolutely delightful and respectful and informative and heard me when I say "I don't speak for Chloe...ask her yourself please"

..as an aside....why do people usually ask us things about our children when they are standing there and are perfectly capable of speaking for themselves?
I always just stick my thumb in Chloe's direction & quietly say...."she's just there...ask her....."
Anyways, I digress......This lovely, very very highly paid specialist gave me a referral for a sleep clinic for Chloe. On this referral was 'Downs Syndrome' OMG!!!! Am I wrong to think when I am paying $350 for half an hour that she should not only know how to spell the thing, but also the correct terminology? 






 

I politely asked for her pen, crossed out the 's' on Downs & made the 'S' a little 's' on syndrome. I explained to said lady that Dr. Down doesn't own the syndrome - it was named after him & his name is DOWN. I then politely explained that syndrome is NOT a part of the title....just a syndrome.






To her credit, she listened, apologised, learnt and changed her error on all the other forms. As I said to her, "we learn something new every day"...just wish it wasn't the bare basics of Ds that need to be taught to these medical professionals, grrrrr.

Let me say, this didn't really get up my nose.....no....that honor was reserved for later.

After dropping Chloe back at her work & coming home, I received a call from the hospital for the sleep study. A whiny voiced woman called to speak to Chloe about booking her in.
I told her I would be happy to book her in. Off we go, agreeing a suitable date and filling in the personal details. She wanted Chloe's contact number, so I told her I would give her mine, as Chloe has Down syndrome.

Weeelllll, that's when things strongly shifted to the  powerful negative....the whine almost became a screech,as I get....

Whiny woman:     So are you staying with her?
Me:                        No, she will be fine
Whiny woman:     Are you SURE she will be OK on her own
Me:                       Yes, I am POSITIVE she will be fine on her own
Whiny woman:     Well you have to understand (those words ALWAYS set me off)
                              there are only 3 staff on, so they can't look after her you know...

THIS SET ME OFF LIKE A

 Very cranky Me:    Listen LADY, she has Down syndrome...she isn't an imbecile!!! She is a perfectly capable woman who looks after herself. And it is very insulting to assume I would leave my child if I didn't believe she will be fine. How dare you assume there is something bad wrong with her, just because she has Down syndrome!!!!
Me again:  Could you please tell me of a motel near the hospital, so I can be close to collect her in the morning?
 Whiny woman:    No...look up Google  CLICK (hangup)

  

Just another day dealing with ignorant people in the medical profession.... Now where is that brick wall I need to bang my head against.....

www.suedymond.com

Disability's winds of change

WOW, WOW and even more WOW!!!!

This is the only word I can find to describe my very first forum for people working within the disability field in Melbourne. I was going to say Australia, but told myself, small steps to success & change are best steps...sooo, watch this space in time to come to read about how the winds of change have blown into other States...

The Inspiring Services-Empowering Clients was a truely inspirational forum, with 3 speakers who were all completely different, yet all shared the same passion and courage...courage to look change in the face & say: 
'I'm comin' for you'.



For those of you who were there, we will be posting videos shortly, of the speakers as a memory jolter for any info you missed, and for those of you who missed out, they will be a great experience to listen to.

Miss Chloe and Miss Hattie manned their table, selling Chloe's ceramic cupcakes and delivering smiles.





 

At one stage, I looked out from the lectern (before calling all to be seated) and was thrilled to see almost everyone talking to someone from other service apart from their own. This is my dream!!! To connect us all and I decided then & there that participation is the way to go.


The beautiful catering was supplied by a business called Tastyaz, 
www.tastyaz.com.au Check out their website. They are a new business that provided training, work experience and pathways to employment for young people with disabilities. AND the food & presentation were 100% class!!

Our next step is to create an interactive resources and networking website for ALL people within the disability sector - services and families & clients.
This is already well under way....so keep your eyes out for that one!!

As with my book launch, I aim to provide all involved with a positive experience with disability and I believe we pulled this off, as the feedback forms were very, very positive and encouraging!


So onwards & upwards I say, as I stride off into the sunset with my wand held high and my group of powerful inspirational change makers...






And with you -  you, yes...striding beside me!! Jump in & join us by getting me to come & inspire your organisation...or better still your area by bringing together a group or organisations. Contact me at: partofchange@suedymond.com

Lets keep the ball rolling, and not be stuck in this!

www.suedymond.com