CCFCC NSW Services Blog
Catch the latest updates from the Services Team at Cystic Fibrosis NSW
The Mobility Allowance is a crucial strategy for people with CF to access the Health Care Card and gain assistance in paying for their very expensive medications. Not only has the eligibility criteria been tightened to the point that most of our members can no longer access this allowance, the Federal Government has legislation before the Parliament NOW to stop this allowance in 2020. We understand the Government has received advice from the Centrelink Mobility Team that this should NOT happen for people with CF but has chosen not to take this advice. If this goes ahead people with CF will have to choose between the cost of medication and their many other expenses. The burden of managing CF will increase for a significant proportion of the CF population. This is an unintended consequence of this legislation. YOU can make a difference.
We are developing a strategy so that we can all act together and create a positive change. You will be hearing more about this soon from us.
If you have had your mobility allowance application refused, please let us know. We need to know the grounds on which refusals are made so that we can assist in appeals. We have been successful in this area lately. Contact us on 8732 5700 or 1800 650 614 or email email@example.com
We are continuing to assist the community and clinic staff with NDIS access requests. We are often asked what makes a successful NDIS application. The most successful technique so far is to have a support letter from a school, TAFE or university that supports your application. A workplace, a gym, a sports club, or any non-medical source that can write a support letter outlining how CF is impacting on your ability to access education, work or the life of the community, may well assist in the process too. Support letters from professionals will have more weight. But they do have to demonstrate what is happening, as a result of CF, that creates a barrier to your participation in the educational, workplace, sporting or cultural life of the community.
We also advise against just filling in the Access Request form. You will notice that the form itself suggests that you can provide copies of reports, letters, or assessments instead of filling out the form. We suggest that you do this, as the form is not written with CF in mind and is likely to result in having access rejected.
Remember that the purpose of your letter is not to show how sick you are, but how CF stops you from doing things like participating in education/learning, work, social life and being independent from the care of others as much as possible.
The NDIS prompt questions look like this:
Do you usually need support from a person or assistive equipment so you can:
Remember the question is not “Can you do it?” but “How do you need the assistance of others to do it?” If you don’t need assistance, then you are not likely to get support from the NDIS.
Need more information or assistance? Contact us on 8732 5700 or 1800 650 614 or email firstname.lastname@example.org.
Need a Holiday?
Plan now for July and October – or even Christmas school holidays. We filled all the Easter vacation spaces almost straight away after our Facebook shout out. The June holidays are starting to fill and one venue has the first and last weekend in October booked. Every family with children with CF (who are under 18) can book one week per year in the free venues at Ulladulla, plus we have cheap accommodation available at Shoalhaven.
If you can attend during term you can pretty much pick your own time. We will also write the social worker support letter for you if you want to access the Ronald McDonald accommodation. Call us 8732 5700 or 1800 650 614 or email email@example.com
No Interest Loan Scheme (NILS)
We are thrilled to announce that members of CFNSW can access the NILS that is available through Foresters Community Finance. Unlike other NILS, Foresters will be approving the costs of CF medical equipment. Foresters is a non-profit social enterprise that uses the principles of community finance to produce improved social cultural and environmental results for its clients.
They provide loans up to $1200 with no interest, fees or hidden surprises to people who wouldn’t normally qualify for mainstream financing options – if they are citizens or Permanent Residents who are over 18, holders of a Health Care Card or earn less than $45,00/year (after tax). This can be used for a variety of reasons, including the purchase and maintenance of medical equipment. This is to take the stress out of affording quality treatment, and the mounting costs of education and essential household items, without nasty surprises down the road.
If you need further assistance, they also offer Community Loans of amounts up to $4000. These loans have low fees, low interest and flexible repayments tailored to suit your situation. By fitting into your routine where it needs to, a Fair Finance loan will cover all your bases at the same time.
Foresters loans are the equitable alternative to traditional finance. You can improve your quality of life in a few simple steps. Contact Foresters by phoning 07 3851 8000 or visit http://www.foresters.org.au/ to find out more and begin your loan application.
Click here https://www.cysticfibrosis.org.au/media/wysiwyg/QLD/Current/PDF/NILS_Document_Checklist.pdf for a NILS document checklist.
Click here https://www.cysticfibrosis.org.au/media/wysiwyg/QLD/Current/PDF/NILS_Loan_Application.pdf for a look at the loan application.
CF Education for School Staff
Our first regional visit is coming up in May and this journey will encompass areas of the NSW South coast. We will be traveling to the regions of Wollongong, Shoalhaven, the Far South Coast and the Southern Tablelands to provide school staff with CF education.
Has your child started preschool, school, high school or changed school? We can come to the school and present to the staff so that they have a full appreciation of the needs of your child/ren and how best to support them and you.
You get to see the presentation in advance and provide information about the particular needs of your child. This will support you in working on a care plan for your child with the school. The school gets up to date information, resources and contact details for us and the Clinic staff. Everyone feels more confident.
Wherever you live call us 8732 5700 or 1800 650 614 or email firstname.lastname@example.org and we will talk to you about when we will be in your area and how we can help you and your child.
Celebration of Life
We are holding the annual Celebrate Life event at the Chapel at Macquarie Hospital at North Ryde on Sunday, 21 May 2017. All are invited. This is a non-denominational memorial with morning tea to follow. For those who are not attending but would like their loved ones’ names read out, please contact us. RSVP to 8732 5700 or 1800 650 614 or email email@example.com.
This year we plan to start a new initiative where we start building support communities in the places where people live. We plan to come to your region (as far as possible) and hold support weekends that would look something like this:
We hope to come to these areas this year: Wollongong/Shoalhaven, Newcastle/Hunter, Western Sydney, Wagga. Next year we hope to expand.
We’d love to know if you think this is a good idea. We are also looking for support and donated venues, resources, etc. If you are interested in attending, or having something like this in your community, or are able to volunteer, donate or pass on local information call 8732 5700 or 1800 650 614 or email firstname.lastname@example.org Or even if you just want to tell us your thoughts.
Parents of Adults with CF
Are you interested in meeting up with other parents of adults with CF – face to face, online or by phone? We have other parents in similar situations who are looking to share experiences and laughs with others that get it. If you are interested contact us 8732 5700 or 1800 650 614 or email email@example.com.
Free Self-Managed Exercise Programs in the Sydney CBD
We have a group of sports professionals who are offering free support to members of CFNSW who have CF. They are being supported by physios from the clinics. If you can access the CBD and are interested in a free program that will make you or your child (12 years or over) physically fitter and feel mentally stronger, and is likely to assist you to use less antibiotics and have less hospital stays, then contact us 8732 5700 or 1800 650 614 or email firstname.lastname@example.org
This is a wonderful program that we have run in various areas funded by various grants in the past. Unfortunately we are not able to access the Local Government grants as we have in the past, largely due to the council mergers. Most of the grants we have accessed are tied to a particular geographic area and/or age group. We are very keen to create access to this program for all people 12+ with CF across the state. So if you know a physiotherapist, personal trainer, exercise physiologist or similar who would be interested in donating 13 hours to provide someone else with potentially extra years of life, contact us 8732 5700 or 1800 650 614 or email email@example.com
As you know, staying fit is essential in CF. The CF Foundation has launched a video series about staying fit and you can find it here.
Exercise for Parents
Interestingly most CF staying fit information is aimed at how to get people with CF exercising. What we know is that if children and young people grow up in families that exercise and stay fit, they are more likely to carry that into adulthood themselves. If you have a child with CF, how much exercise are you getting? Even if you struggle to put the focus on yourself, maybe you need to think about how you can influence your child by exercising. Maybe, you need to stay fit to best be able to look after your child. And doing physio doesn’t count!! Lol.
There are other good reasons for getting sufficient exercise yourself. We know that parents of children with CF are more than twice as likely as others to live with anxiety and depression. This information will be a surprise to no one in the CF community. Exercise is an excellent way of managing anxiety and depression. They have more energy and more fun! Parents with good mental health are also better able to support their children’s physical and mental health and future growth into independence.
So let’s all practice what we preach and join the world of movement.
Turning 16 Letter
Last month we sent out the Turning 16 letter and this month we plan to send out the Prior to Transition Letter. The Turning 16 Letter went to all families where there is a child with CF turning 16 this calendar year. It gives step by step instructions on all the things that need to be done before the child turns 16 to ensure that healthcare access continues without a hitch and that every person with CF gets every entitlement that they can access. As it is the first year we have done this we also sent it to all the families who have a child who turned 16 last year. If you should have received this letter but did not, we probably do not have your correct contact details. Please contact us 8732 5700 or 1800 650 614 or email firstname.lastname@example.org
One parent contacted us to say that she thought this was the best thing we had ever done.
This month the Prior to Transition Letter will go to every young person who is turning 18 this year and will be transitioning to an adult hospital. We will also send a copy to the family so that they can understand the processes and support the young person through them. If your family does not receive this please contact us 8732 5700 or 1800 650 614 or email email@example.com If you know young people with CF who are 17 years old remind them to update their contact details with us as we currently have their parents’ details.
We are in the development phase of Before Starting Preschool and Before Starting School letters too. Let us know if you have questions that you want answered in this letter.
Wifi and online resources
For those of you concerned about being bored out of your skulls during your next admission, John Hunter Children’s Hospital now has WiFi in the wards. Yay! While WiFi hasn’t arrived at John Hunter Adults, CNC Kim Cookson has found a way. She tells us that cables are being delivered any moment so adults should also have access.
Westmead Adults has also had WiFi for about 8 weeks. The Children’s Hospital at Westmead and the Sydney Children’s Hospital also providing WiFi access. Clearly the days of sweating on the the amount of GBs you can hotspot from your phone are pretty much over. As are social media withdrawals and being stuck with free to air TV – grateful as we are that they were there, it is still better to have choice.
www.Livewire.org.au is a 24/7 space for young people (aged 10-20) living with a long term health condition or disability, and their siblings. Livewire is powered by Starlight and all members are validated so everyone is safe. There is quite a community of young people living with CF there already; chatting, blogging, watching music vids, entering comps and just hanging out with other cool peeps like you!
Lastly, if you have an iPhone, don’t forget that you can download the CFBuzz App. This is the first app that helps adults with CF manage all aspects of the health and care plan. Go to http://www.cfbuzz.org/app/ for more information. You’ll find a YouTube of co-developer CNC Lucy Keatley, from Westmead Hospital, talking you through it too.
Do you live more than 100km from your treatment? Do you find it too difficult to claim your IPTAAS? Keryn Schwaeger, our Regional Support Worker, is the person who can support you through the process and provide you with the assistance you need. Please contact us 8732 5700 or 1800 650 614 or email firstname.lastname@example.org.
Siblings Australia is establishing a local peer support network for adults who have a brother or sister with a disability. They plan to Meet and Greet at Marrickville on 1 April, 2017. To register and/or find out whether this group might suit your needs please email email@example.com or phone 0408720558. Kate also has a FB support group for adult sibs: email or phone for more information. Go to the homepage for more information on Siblings Australia Inc and what it can offer http://siblingsaustralia.org.au/
If your child with CF does get access to the NDIS, as part of the child’s participant’s plan, you can request assistance to help you support the child’s siblings. This assistance can be supplied by Kate Strohm, Siblings Australia, via Skype or phone. Kate is registered with the NDIS so that her services can be reimbursed by them.
Newcastle Annual Race Day
John Hunter Children’s Hospital have set the date for their annual race day – 12th August 2017 @ Newcastle Jockey Club. Cost $140 Further Information contact : Linda Cheese 0249213000 page 5934.
Changes at The Alfred 5West
Alfred 5 West includes the respiratory and transplant clinics. CFVic has contacted us and asked us to let those people who use Melbourne clinics and hospitals know about the change process. During the previous call for feedback on the proposed changes to 5West at the Alfred, they received feedback from more than 170 patients and families. A summary of the themes are included in their recent newsletter (the second edition of the 5th Floor News).
The Alfred is now at the point of establishing a Patient Reference Group. They are looking for 8-10 patients from all parts of their respiratory service who can use their own experiences to provide detailed feedback on the draft designs of the new clinical areas. If any of your community might be interested, please forward this onto them so they can read through the Terms of Reference and complete this Expression of Interest by 3pm on Friday 17 March.
For more information and regular updates, please visit their website at www.alfredhealth.org.au/about/patients-come-first/consult5floor or please feel free to call myself or Karin. We are continuing to attend meetings with them and lobby to ensure that the changes have the best possible outcomes for the CF community.
We hope you all enjoyed the holiday break and thought this was a good time to remind families whose children have CF that if you want to book cheap or free holidays we have access to holiday places on the South Coast at Batemans Bay and Shoalhaven. Just contact us and we will book for you. If you are looking for school holiday times then give us plenty of notice as they book out fast. Don’t forget that Ronald McDonald has wonderful places at Forster and Batemans Bay too as well as interstate. You will need to complete an application for Ronald McDonald with either a doctor or social worker’s support letter. We are happy to help out with the support letter.
With school coming up don’t forget that we can attend day care, preschools, big schools and high schools to provide CF Education. We can even do it via video link if you are really remote. Keryn, our community worker, travels over large parts of the state each year so no matter where you live, contact us and we will put you on the list. You are provided with a copy of the presentation in advance and Keryn will consult with you about what information should be included. You can also speak to the staff about the particular issues for your child with Keryn there to assist.
We can provide CF education to groups as well. In the past we have provided it to workplaces, groups of friends and social groups, and to extended family members. It can be very hard when all your friends and family are asking you questions and you hardly have your head together yourself. We can come and assist with the explanations for you.
Under the legislation that is before Federal Parliament the Mobility Allowance guidelines have been updated. From 01/01/2017 only those who fulfill all the following criteria qualify. Under
The substantial assistance qualification will be problematic for many people with CF who have received this allowance in the past. If you received Mobility Allowance before 01/01/2017 you will continue to receive it under the old criteria. However if you cancel for any reason you will have to apply under the new criteria. For those who receive the Mobility Allowance under the new criteria and then stop work or training, the Allowance will be stopped after 4 weeks. Furthermore Mobility Allowance will no longer exist from July 2020.
Kristen Andrews is a physiotherapist who is undertaking research on the experience of families with children under 2 who have CF. If you are in this group and interested in participating in research to improve the experience of families living with CF contact her at firstname.lastname@example.org or (02) 60519223 or 0458780983. See the ad in the newsletter.
We are aware that many parents and family members of people with CF, no matter what age, feel isolated and in need of contact with others in the same situation. Fears of cross infection plus geography and other issues get in the way. In the US groups for parents and families are being run very successfully by phone and through the net. If you would be interested in this in 2017 please email us at email@example.com or call 1800650614 and let us know. We are happy to hear your ideas too.
If you are travelling over 100km to clinic or hospital or other treatment and having trouble with claiming your IPTAAS (or you’ve never heard of it) give us a call. We can probably help you out. One quick tip – use the camera on your phone to photograph all receipts. If you lose them it doesn’t matter and they are all in one place when you go to look for them. You can photograph where you parked the car in the hospital car park so you can find it again too!