Open letter to the government re: covid vaccination for vulnerable children

 Open Letter to the Federal Government 

Regarding the Reality of Booking a Covid Vaccination for Vulnerable Children 

Since Monday the 9th of August children aged 12-15 years with disability or pre-existing medical conditions are eligible to receive a covid vaccination.

I am the mother of such a child. 

My youngest has an as yet unknown disability.  Should he get Covid he will struggle to survive. My husband and I are fully vaccinated  and our 18 year-old son will have his second jab in about two weeks. 

If you know that our oldest son died in 2018 (aged 17) from pneumonia related to the disability he shared with the youngest, you can maybe imagine my relief when our youngest (born April 2006) became eligible for a vaccine.

So on Monday the 9th, I sat down with my morning coffee and smartphone to book an appointment. 

The website of the wonderful vaccination hub at Sydney Olympic Park (run by NSW Health) where I received my shot (as carer, in the b2 category) guided me through the mandatory eligibility section. The answer was prompt: “not eligible, your appointment has been cancelled.” I figured this was simply a case of the website not yet being updated, so I rang them. The phone message sent me back to the website. That was dead end number one.

I remembered we could also contact our GPs, so I rang them. Their answer was equally prompt: “We would love to vaccinate your child, but we don’t have any Pfizer”. I then rang and emailed (depending on what their way of booking was) numerous wheelchair accessible GPs in my area: I found some in Gordon and Lane Cove that had Pfizer but insisted children under 16 were not eligible or said they were not able to give it due to licencing issues. I rang GPs in Pymble, Wahroonga, Lindfield, and Roseville. They didn’t have Pfizer. The vaccination hubs at Roseville and Ryde would only accept bookings online, but there was no way to enter the details for an under 16 year old? Dead end number three.

Then, bingo! I managed to secure an appointment at Royal Prince Alfred via the NSW vaccine finder The only problem was, I could only find an availability for a first shot – and because I could not find a slot for a second shot, I was unable to book at all. Dead end number four.

I rang the Children’s Hospital at Westmead, who have a vaccine clinic in their old ED, and they know my kiddo really well. They don’t do public vaccines (yet?). Dead end number five.

I tried HotDoc and found availabilities – but none would allow me to book an under 16 online, and none accepted phone bookings. Dead end number six.

I was getting desperate.

I was not the only one. The parent grapevine had kicked into action. Some people had managed to obtain an appointment via an NDIS service provider. I was not informed about any of these things (we mainly use mainstream services) but thanks to my fellow activist parents, I received a link to make a booking. The online booking form only allowed a birth year as late as 2006, but since that is my child’s birth year, I thought we were good. I received two text messages confirming the appointments for the first and second shot. Success.

The day before I was due to go, one of my friends went with her child. She was told to go away – this was a private clinic and she should not have been given the link. As her child was booked for a minor procedure the next day, the nurse turned a blind eye and vaccinated my friend’s child after all. Only after I left a comment on their Facebook page was I rung by the company providing the vaccines. They were very apologetic, but no, the booking had to be cancelled. But not to worry, next week was a public clinic, so all I had to do was make a new appointment. Dead end number seven - but also bingo.

This morning, we rocked up to said clinic for our appointment. And I kid you not, we were turned away. There was some argy-bargy about 12-15 year old children not being  eligible, and there only being a nurse available on site and no doctor. Dead end number eight. 

Now I really was desperate.

Now what?

Since I was halfway down to Sydney Olympic Park, I loaded my youngest back into the car and drove to the vaccination hub. I was at my wits end. I needed to talk to a human being who could help.

We were led to the Help Hut via the accessible ramp around the back, and there an angel appeared at the door. 

She listened to our predicament, talked briefly to her supervisor, and sat us down. “I’ll sort you out”, she said. And boy, she did! She did the intake (which involved some slight “creative” answering of questions, and hey presto, about ten minutes later the first Pfizer shot went into my son’s arm. 

I nearly burst into tears.

The NSW Health staff were amazing. They were understanding, professional, and courteous. They talked to my son (many people are intimidated by his electric wheelchair and talk over him to me) and were very gentle and caring. 

I walked away with an enormous sense of relief.

I understand we are in an unprecedented pandemic, but really, does it have to be this hard? Do we really have to spend hours trying to get an appointment, and argue with GPs who claim our children are not eligible? Be turned away because some paperwork is not sorted? Can’t websites be updated? Why is there no information for us? 

Thank heavens for our NSW Health angel today. I will sleep better tonight

Ramp Rebate

Did your kids have a nice school holidays? One with lots of playdates and sleepovers, the stuff that kids’ holidays are made of?

Well, my daughter didn’t really,

You see, she can’t get in to her friend’s houses. That’s right. She literally can’t enter. And this is one of the single most excluding and marginalising issues for her at the moment. Oh, she knows what her friends are up to. She knows who goes to whose house. She is also acutely aware that she is excluded.

I was talking about the social model of disability with her just yesterday. I reminded her that the way her body works means that she has a physical impairment in the sense that she doesn’t walk, and needs a wheelchair to get around independently. She has done so since she was 3, and she has now been using an electric wheelchair for ten years. Her body is just fine the way it is, impairment and all, and in her wheelchair she is very able indeed. What dis-ables her is the way we build our environment. Stairs disable. Curbs disable. Escalators disable. Ramps, curb cuts, travelators, lifts, they allow her the independent movement she so craves. She has a physical impairment but is only disabled because society excludes her.

And while things are slowly (excruciatingly slowly) improving in terms of accessing public spaces, housing, especially private housing, remains largely inaccessible. 

Of course she invites friends to our house, and they come. But remember being a kid? Remember the thrill of going to someone else’s house? The revelation that other people live differently? How they have different types of furniture, different rules in the house, eat different foods and all those mini discoveries of the beautiful human diversity? That is what she misses out on. 

Many of the older houses around us are being demolished and replaced by new kit homes. Why do so many of them have a step to get in? When will the kit home companies finally embrace the principles of Universal Design and build ramps (so much more functional for prams, walking frames, and yes, wheelchairs) instead of steps? We’re not asking the world – she would love to just be able to het into the house, she is realistic enough to be ok with not being able to access the second floor…Just imagine, if as of tomorrow, all new houses would be step-fee!

Of course, that would still leave many older houses inaccessible. So what can be done?

Many houses - and shops for that matter!! - could drastically improve access with a simple rubber wedge from the hardware store. They don’t cost the earth – but they could make a world of difference to my daughter.

This sort of thing:

But hardly anyone has them. People don’t think about it. Just can’t be bothered. 

We have so many worthwhile rebate schemes for sustainability; there are rebates for solar panels and heat pumps, for insulation, for rainwater thanks, green roofs, pool-to-pond conversions, permeable surfaces.

Where are the accessibility rebates?

There are none!!

Why not ??

Imagine if you could get a rebate for that little rubber wedge you got from the hardware store to bridge that one step into your house. Or be able to tax-deduct the building of the entry ramp to your house. Imagine if material to retrofit a house was GST free if it was done for accessibility reasons. Would you do it? Would you do it if you, or your child, knew someone who was a wheelchair user?

People with disability are among the most socially marginalised in our society. They are literally excluded from entering our lives.

My daughter’s next school holidays could be radically different if there was a ramp rebate scheme.

I can dream, right?

Jetstar

I wrote another letter over the weekend...  Let's see where this goes...

Letter to Gareth Evans, CEO Jetstar Airways Pty Ltd (gareth.evans@jetstar.com),

Dear Mr Evans,

I am writing to you about Jetstar boarding procedures for wheelchair users at Sydney Domestic Airport T2.

In March 2019, I travelled with my then 12 year old daughter Billie from Sydney to Launceston, were she was competing in the 2019 Tasmanian State Boccia Titles. Boccia is a Paralympic ball sport played in over fifty countries.

Billie uses an electric wheelchair. Her chair is very expensive ($27,000) and an absolutely essential part of her life.

We are regular travellers with Billie, so we have a fair bit of experience flying with an electric wheelchair. We have all the necessary paperwork (such as Dangerous Goods declaration and details of the chair and battery type) ready, and always arrive two hours before departure, allowing more check-in time than the recommended minimum 90 minutes for domestic flights.

We decided to travel Jetstar for a number of reasons: we are Qantas Frequent Flyers and all the wheelchair details (IATA code WCHC) are listed under her membership; we strongly prefer direct flights as every change increases the chances of the wheelchair getting damaged (only Jetstar and Virgin Australia are available as direct flight from Sydney to Launceston, bypassing Melbourne); and finally, the Virgin flights from Sydney to Launceston were not available.

When we arrived at check-in, we were told Billie was not allowed to drive her chair to the door of the aircraft as per Jetstar policy. When asked why this was so, it was explained to us that “there is no lift near the gate” and staff would have to push the chair from the aircraft back to the lift near the check-in counter, then travel down, and push the chair back to the aircraft to be loaded into the hold.

Upon reading your Disability Access Facilitation Plan, I understand that this is presented as standard procedure for passengers travelling with an electric wheelchair. I believe this requirement contravenes the Disability Discrimination Act 1992 (Cth) and is contrary to the CASA guidelines which clearly state ‘[a]irlines cannot restrict the movements of passengers in terminals, including those with a disability. Nor can they require them to remain in a holding area or other location while waiting for transport or assistance.’[1]  Furthermore, your policy is either inadequate or incorrect – in Launceston, Billie was allowed to stay in her electric wheelchair after check-in and drive to the aircraft, where a DPL99 Special Access Lift or similar, was used to take her in her electric wheelchair to the aircraft door.

Yet in Sydney, Billie was forced to use one of Jetstar’s narrow aisle chairs. She was not offered a wide body wheelchair. In either case, both types of manual wheelchair would have to, as per your policy, be pushed by a staff member or assistant of the travelling wheelchair user, thus taking away any independence of movement contrary to CASA advice.

Billie cannot safely sit in these aisle chairs, and had to be strapped up in order to not fall out. Keeping in mind that we had arrived super early as a courtesy to your staff to allow a smooth check-in, this meant that Billie was in essence strapped into a chair for about two hours, as if in some type of straightjacket.

She was absolutely distraught and petrified the entire time. In between her sobbing she said “they literally just took my legs away” and she requested that we take a photograph so that “people can see what it’s like, because they don’t understand.” Here is that photograph:

It has taken me a few months to write this letter, because both Billie and I are still getting upset thinking abut this moment, (although at Billie’s request, I did post the photograph on Facebook at the time. It was shared over 1.6K times).

I believe this procedure by Jetstar check-in at Sydney Domestic Terminal 2 falls short of your legal obligations on a number of fronts.

Forcing electric wheelchair users into manual chairs at check-in is a restrictive and discriminatory practice not based on any logical and proportionate reason.

Taking people’s mobility away would certainly be an improper use of a restrictive practice – especially in the case where people are strapped into aisle wheelchairs for more than an hour. Restrictive practices are defined by the Australian Law Reform Commission[2] as involving ‘the use of interventions by carers and service providers that have the effect of limiting the rights or freedom of movement of a person with disability, with the primary purpose of protecting the person or others from harm. These include restraint (chemical, mechanical, social or physical) and seclusion.[3]  While restrictive practices are generally used in circumstances to protect from harm the person with disability or others around them, they are also imposed as a ‘means of coercion, discipline, convenience, or retaliation by staff, family members or others providing support’ (my emphasis).[4]

Insisting that people transfer to manual chairs that need to be driven by others rather than self-propelled infantises wheelchair users, and, where people with disability like Billie need to be strapped in, may amount to a civil offence (in tort) of trespass to the person or false imprisonment.[5]  Furthermore, denying people their means of independent mobility may also amount to discrimination under s 5 of the Disability Discrimination Act 1992 (Cth).

Can Jetstar please clarify the following points:

1) I am utterly confused with regards to the lift issue as presented to me by Jetstar staff at the check-in counter. The map of Sydney Domestic Terminal T2 (Departures and Arrivals)[6] shows a lift between gates 59 and 57. Why can this lift not be used to bring electric wheelchairs from the gate down to the aircraft?

The lift that is shown by the gates is at about the same distance as in the part of the terminal used by Virgin Australia (who do allow people to drive their chairs to the door of the aircraft). Can you please confirm or deny whether there is indeed a lift near the gates. If there is a lift, why is it not being used? What explains the difference in policy with Virgin Australia airlines in the same terminal?

2) Given the restrictive, discriminatory and possibly tortuous nature of the procedure, on which basis has Jetstar decided upon this particular check-in procedure? What is the reasoning behind it? When will Jetstar change this procedure and find alternative option to provide people of self-propelling wheelchairs so they can make their way to the gate and aircraft door, and/or allow people to drive to the door of the aircraft in their own electric wheelchairs?

Looking forward to hearing from you soon.

Heike Fabig, [contact details]

---

[1](Australian Government, Civil Aviation Safety Authority, Travellers with a Disability , website information, <https://www.casa.gov.au/aircraft/cabin-safety/travellers-disability>, accessed 27 June 2019.

[2] Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws (Report No 124, November 2014).

[3] Australian Government, National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector (2014) 4.

[4] Disability Rights Now, Civil Society Report to the United Nations on the Rights of Persons with Disabilities (2012) [241].

[5] Secretary Department of Health and Community Services v JWB and SMB (Marion’s Case) (1992) 175 CLR 218) as per Mason CJ, Dawson, Toohey and Gaudron JJ at [3.40] and [6.35].

[6] Available on: <http://ontheworldmap.com/australia/city/sydney/sydney-airport-terminal-2.jpg>.

Sweet Sixteen - Do You Still Have Your Disability?

There is a certain regularity to life with a disability in Australia. Some stories just hit the newspapers again and again, in a sad indictment of how entrenched disability discrimination is.

Here is one such story.

A mother in Western Australia has called for a nationalregister documenting permanent disabilities after she was repeatedly contactedby Centrelink to prove her son “still had” Down Syndrome.

Yep, you read that right. The same happens to amputees, by the way, who have to show proof their missing limb hasn’t somehow grown back…

I hear you ask, how is this possible?

As the general manager of the Department of Human Services is quoted saying in the article, it’s all to do with legislation and “…we are not able to automatically transition people to adult payments…”

So, lets have a look at the legislation.

This issue comes up where a person receives carer allowance ($64.90 a week, payed as $129.80 fortnightly) when caring for a child with disability. Obviously, proof of the disability is required, as is proof that the child is actually being cared for by the carer receiving the allowance.

But all going well, said child one day turns 16. And suddenly, carer allowance is cancelled – despite the disability still being there, and the child receiving the very same care. (This change is presumably based on the notion that 16 year old kids with disability regularly move out of the house to pursue lucrative careers and are no longer needing care, but I digress…)

Being 16, the person with the disability is now able to apply to receive a Disability pension ($391 fortnightly). The parent is able to request carer allowance – but for a person 16 or over – and needs to basically re-apply. And yes, you guessed it, what means the whole rigmarole of paperwork again, including confirming the diagnosis of the young person. This literally leads to the absurd situation that a doctor’s appointment needs to be booked to confirmed that, yes, the leg is still amputated and has not miraculously grown back, and no, despite amazing medical progress in recent years, we have not yet been able to reverse paraplegia or Down Syndrome (CRISPR-CAS9 where are you when we need you??). And then, Centrelink needs convincing that the care is still given despite the magic 16^th birthday having passed.

Of course, there are solid reasons why social security payments may require reviewing regularly. There are, after all, some people who will abuse the system. And yes, people may have transitioned to the NDIS, their living and support arrangements may have changed

Yet why a smooth transition cannot be managed here is incomprehensible.

Section 953 of the Social Security Act 1991 (Cth) outlines the requirements to receive carer allowance for a child or children with disability or medical condition aged under 16 years of age and where the income test requirements are met. T

Section 954 of the Social Security Act lists the necessary qualification for carer allowance-caring for a disabled adult in a private home of both the adult and the carer. It applies to z person who is aged 16 years or over, whose disability or medical condition substantially impairs his or her capacity to perform activities of daily living. In addition, eligibility is determined by the ADAT (Adult Disability Assessment Tool), which measures the level of disability and care required by the care receiver. The carer must also meet the $250,000 family income test to qualify for carer allowance (adult).

Section 954 is the section of interest. Let’s have a look at it:

Qualification for carer allowance--caring for a disabled adult in a private home of both the adult and the carer

             (1)  A person is qualified for carer allowance for a disabled adult (the care receiver ) if: 

                     (a)  the care receiver is an Australian resident; and 

                     (b)  the care receiver is a family member of the person or is a person approved in writing by the Secretary for the purposes of this paragraph; and 

                     (c)  the care receiver has been assessed and rated under the Adult Disability Assessment Tool and given a score under that assessment tool of at least 30, being a score calculated on the basis of a professional questionnaire score of at least 12; and 

                     (d)  because of the disability from which the care receiver is suffering, the care receiver receives care and attention on a daily basis from the person, or the person together with another person, in a private home that is the residence of the person and the care receiver; and 

                      (f)  the person is an Australian resident; and 

                      (g)  the person satisfies the carer allowance income test under section 957A. 

Note 1:       For family member see subsection 23(1). For Australian resident see section 7. 

Note 2:       For qualification for carer allowance in circumstances of hospitalisation, see section 955. 

Note 4:       For the effect of temporary cessation of care and attention on carer allowance, see section 957. 

Note 5:       For the effect of 2 people being qualified for carer allowance, see sections 964 and 965. 

Disabled adult does not qualify for carer allowance for another disabled adult

             (2)  If a person is qualified for carer allowance for a disabled adult, the disabled adult is not able to qualify for carer allowance for another disabled adult. 

Person cannot qualify for more than 2 carer allowances 

             (3)  A person may qualify for carer allowance under this section and/or section 954A for 2, but no more than 2, disabled adults.

I have a number of issues with this (like, why could a disabled adult parent not receive carer allowance for a dependent adult disabled child living at home is beyond me) but lets stick to the issue of transitioning from section 953 to 954 i.e. hitting the magic birthday of 16.

The solution seems relatively simple to me.

Let’s add a subsection to this section that ensures it applies to those who previously received carer allowance (under s 953) and have a confirmed permanent condition, leaving the assessment to those with conditions that are not permanent. To tidy things up, we could then introduce a section 953B (mirroring s 953A) to enable the transition.

I am sure someone used to drafting legislation can find the right words to polish what I suggested here into a working amendment…

A small adjustment.

A big impact on families.

So, today I emailed a letter to Paul Fletcher MP, the Minister for Families and Social Services, to request ad amendment to  ss 953 – 954 of the Social Security Act 1991 (Cth) to make the transition smoother for those families where a child with a permanent disability reaches their 16^th birthday.

I think two relatively simple amendments are required:

1)    Amend section 954

 Current version                                                 Suggested amendment, in italics

SOCIAL SECURITY ACT 1991 - SECT 954 Qualification for carer allowance--caring for a disabled adult in a private home of both the adult and the carer              (1)  A person is qualified for carer allowance for a disabled adult (the care receiver ) if:                       (a)  the care receiver is an Australian resident; and                       (b)  the care receiver is a family member of the person or is a person approved in writing by the Secretary for the purposes of this paragraph; and                       (c)  the care receiver has been assessed and rated under the Adult Disability Assessment Tool and given a score under that assessment tool of at least 30, being a score calculated on the basis of a professional questionnaire score of at least 12; and                       (d)  because of the disability from which the care receiver is suffering, the care receiver receives care and attention on a daily basis from the person, or the person together with another person, in a private home that is the residence of the person and the care receiver; and                        (f)  the person is an Australian resident; and                       (g)  the person satisfies the carer allowance income test under section 957A.

SOCIAL SECURITY ACT 1991 - SECT 954 Qualification for carer allowance--caring for a disabled adult in a private home of both the adult and the carer              (1)  A person is qualified for carer allowance for a disabled adult (the care receiver ) if:                       (a)  the care receiver is an Australian resident; and                       (b)  the care receiver is a family member of the person or is a person approved in writing by the Secretary for the purposes of this paragraph; and                       (c)  the care receiver has been assessed and rated under the Adult Disability Assessment Tool and given a score under that assessment tool of at least 30, being a score calculated on the basis of a professional questionnaire score of at least 12; or                    (cc) the person previously received carer allowance by virtue of compliance to requirements under section 953 for the care of the same care receivers, and the disability of the care receivers has been confirmed as a permanent condition; and                      (d)  because of the disability from which the care receiver is suffering, the care receiver receives care and attention on a daily basis from the person, or the person together with another person, in a private home that is the residence of the person and the care receiver; and                        (f)  the person is an Australian resident; and                       (g)  the person satisfies the carer allowance income test under section 957A.

2) – Introduce section 953B to mirror 954A

Current version                                                Suggested amendment, in italics

SOCIAL SECURITY ACT 1991 - SECT 953A Remaining qualified for carer allowance up to 3 months after child turns 16, where child has non-permanent disability Single child         (1)  If:                  (a)  a person is qualified for carer allowance under subsection 953(1) for a disabled child; and                  (b)  the child turns 16; and                  (c)  apart from the child turning 16, the person would remain qualified for carer allowance under that subsection for that child;  then the person remains qualified for carer allowance under that subsection for that child until:                  (d)  if the child is assessed and rated and given a score under the Adult Disability Assessment Tool before the end of the period of 3 months beginning on the day the child turned 16--the end of the day before the day the child is given that score; or                 (e)  otherwise--the end of the period of 3 months beginning on the day the child turned 16. Two children         (2)  If:                  (a)  a person is qualified for carer allowance under subsection 953(2) for 2 disabled children; and                  (b)  on a particular day (the relevant day ), either or both of those children turn 16; and                  (c)  apart from either or both of those children turning 16, the person would remain qualified for carer allowance under that subsection for those children;  then the person remains qualified for carer allowance under that subsection for those children until:                  (d)  if either or both of those children are assessed and rated and given a score under the Adult Disability Assessment Tool before the end of the period of 3 months beginning on the relevant day--the end of the day before the day the first such score is given to one of those children; or                  (e)  otherwise--the end of the period of 3 months beginning on the relevant day.          (3)  Subsection (2) can apply only once in relation to the same 2 disabled children.

SOCIAL SECURITY ACT 1991 - SECT 953B Remaining qualified for carer allowance after child turns 16 for care receivers of adult children with permanent disability Single child              (1)  If:                       (a)  a person is qualified for carer allowance under subsection 953(1) for a disabled child; and                       (b)  the child turns 16; and                       (c)  apart from the child turning 16, the person would remain qualified for carer allowance under that subsection for that child; and                      (d)  the disability of the child has been established as a permanent disability; then the person remains qualified for carer allowance under that subsection for that child. [original subsection (d) deleted] [subsection (e) deleted] Two children         (2)  If:                  (a)  a person is qualified for carer allowance under subsection 953(2) for 2 disabled children; and                  (b)  on a particular day (the relevant day ), either or both of those children turn 16; and                  (c)  apart from either or both of those children turning 16, the person would remain qualified for carer allowance under that subsection for those children; and               (d)  the disability of the children has been established as a permanent disability; then the person remains qualified for carer allowance under subsection 954 for those children; then the person remains qualified for carer allowance under that subsection for those children.                 [original subsection (d) deleted [subsection (e) deleted]         (3)  Subsection (2) can apply only once in relation to the same 2 disabled children

Let’s see if the Minister takes this change upon himself…