Disability Tax Credit…What now?

Disability Tax Credit next steps for people with diabetesLast week, CRA decided to reverse its policy on adults living with Type 1 diabetes and the Disability Tax Credit. If you are in India here is the pan card application online, this is a unique card for taxpayers. This probably has many people wondering..what now?? Here are a few next steps for adults living with type 1.

If you have had your application rejected since May of 2017, CRA has said that they will be re-examining all denied claims for people living with type 1 diabetes.

This means that if you would have previously qualified for the DTC based on pre-May guidelines, your application status will be changed to approved.

If you haven’t made your application yet, you can now do so with some confidence of approval.

If you live with type 1 diabetes and are intensively managing your diabetes, then you could qualify.  As per before May 2017, you will have to show the time you spent.  That time will have to be more than 14 hours per week.  It cannot include time spent on exercise, carb counting or recovering from a low.

Follow the Disability Advisory’s Committee’s actions and calls for action.

The Disability Advisory Committee is made up of professionals and advocates.  They will be working to see the DTC fairly applied to all qualifying individuals.

If you are interested in seeing the credit properly reflect the needs of Canadians and more specifically, Canadians with type 1 diabetes, I would suggest that you follow the activities of this committee. They will be looking for submissions and information from Canadians.  Send in your letters and continue to help them inform Ottawa of why people with diabetes who intensively manage their diabetes qualify for this credit.

Keep the pressure on your MPs.

Make sure that your MP understands that the Liberal government’s recent actions surrounding the Disability Tax Credit are not acceptable.  Let them know that we do not appreciate being lied to.  Ensure that they understand what is involved in diabetes care on a daily basis.  Work to educate them on how people with type 1 diabetes spend over 14 hours on life sustaining therapy.

If you have any more questions or would like someone to review your application before submitting it to CRA for approval, I am always just an email away!

Cows equal diabetes?

Go to flickr.com/explore and write about the image that you see.
This is the prompt for today’s WEGO Health Writer Activists challenge.
Bringing Them Home. Sunnyside Farm. by Peter G Hall
The picture I received is a picture of a painting. A lone man and a herd of cattle.  It took me only seconds to see how it related to my health issue…diabetes.

The cattle are divided into two groups and I instantly had my connection.  Diabetes!! The cattle can be seen as the disease commonly referred to as diabetes.  The large group of cows on the right represent the larger category of Type 2 (Adult onset) diabetes.  The smaller group to the left reflects those living with Type 1 diabetes.  Statistics always say that only 10% of people with diabetes have Type 1.

I was on a roll! The lone man walking between the two groups? Well he is not necessarily a man. He is me! He is a parent of a child with diabetes. It does not matter what “type” of cow his/her child is.  He watches over all of them.  He is concerned with all of them. He wants to protect all of the cows–to watch over them and keep them safe from harm.

A simple farm scene quickly becomes a health scene.  My brain is filled with diabetes and can see it in the most unlikely of pictures but there it is…”Bringing them home” becomes “Guarding the Herd” in my mind’s eye with very little effort.  It is almost scary how easily that came to me.  How diabetes fills even the most obscure crevasses of my mind.  

One more obstacle overcome!

What a month! The month of March was very important to me because it marked ten years since diabetes had moved its unwanted self into our lives.  I faced it with mixed emotions. My heart broke for the innocence that was lost but we celebrated good health and the amazing friendships that we had found because of diabetes. I made a conscious choice to begin to focus on the positives. Diabetes was here to stay so no sense crying over spilled milk.  It was time to rejoice over the wonderful people that had been brought into our lives. 

We had made friends with families from all over the world.  We had connected and that was the best part of life with diabetes. The worst part also reared its head in March.  For every parent who has a child living with diabetes, their worst fear is to have their child lose their life to this disease.  A parent is never to outlive their child and in the past month it has happened to far too many parents. I am not sure why this has happened.  Is it a product of technology that we are learning more about these deaths? Is it a product of the fact that we have become such a close knit community? No matter what the reason, we had heard of four death of children under the age of 21 who had either succumbed to a low at night or who ran into trouble with highs and slipped away from their families.  There is no greater loss.  There are no words. 

These deaths cut me to the core. I was heartbroken to know that children, in some cases very close to my own child’s age, and in two cases diagnosed at the same time as my child, had their lives cut short. I began to wonder about my own focus.  I have always worked very hard to make life better for those living with diabetes now.  As much as I would love a cure, I have never been able to see it happening in my lifetime.  I felt it was better for me to focus on keeping those who have the disease healthy and in the best shape that I could.  I felt that if a cure was found that they would then be able to move forward with only memories of life with diabetes and not carry forward the complications. These deaths made me wonder if my focus was wrong. Could it be that a cure was the most important thing of all? Could it be that I should be focusing on fundraising and getting people to really dig deep to help with this? I was truly at a loss. I did not know which way was right…until Monday.

This past Monday changed it all. It put me back on track and made all of the doubts disappear. You may remember if you follow www.diabetesadvocacy.com, that pre-budget consultations were recently held regarding the impending Newfoundland and Labrador Spring Budget.  I encouraged people to send letters and to ask the Minister of Finance to see fit to expand the existing insulin pump program to include all adults with Type 1 diabetes.  It was too painful to have to deal with young adults who had received a pump as a child but who could not afford to use it once they turned 18.  It was killing me to have to tell my son that his career choice would have to be based on income and health benefits.  

My son and I had had a conversation about career choices on that very Monday.  He looked at the garbage truck going by and jokingly told me that he was going to be a garbageman when he was finished school.  I told him that he couldn’t.  He would not be able to afford his insulin and supplies.  I quickly gave him a total of over $1000 a month in diabetes supplies and said that the pay of our local garbageman just would not cover it for him.  He then asked what if his brother decided to be a garbageman? I said that as upset as I would be because I obviously am hoping that my boys do a little more with their education, that he could be a garbageman if that made him happy.  I further explained that his brother did not have the same high health costs to cover and he could live on that salary. 

Monday evening I received an email.  The Newfoundland and Labrador government had announced in their spring budget that they would be expanding the existing Insulin Pump Program to include young adults aged 18-25.  I could not believe it! We had left our pre-budget consultation planning to come back and continue this fight next year.  We were sure that our message had not been received.  I had not heard back from a lot of people and thought that the message was not being spread.  We vowed to do a much better job for the 2011 budget.  This would be a learning experience but we would not give up. 

Well we still will not give up but we have once again overcome one more obstacle.  We are one step closer to coverage for all people with diabetes in the province.  My month was made.  Our work had paid off.  People did stand up with us.  We did make a difference! I have not been able to fund a cure for my son, but I have been able to improve the financial security of many Canadians living with diabetes through changes in the Disability Tax Credit.  I have further made a huge difference in the life of my son and many, many other young people living with diabetes in Newfoundland and Labrador by working with others to see coverage for insulin pumps.  I know my focus and am so proud that it has paid off so well.  Thank you once again to everyone who helped us to see this happen!

Monkey See, Monkey Do

Last night I was flipping through channels, killing a bit of time before I took my weary body to bed.  I watched a show about a trans-gender case, got bored, moved on.  I came across the “Celebrity Apprentice”.  I have never seen the regular “Apprentice”, let alone the celebrity version but I noticed that Brett Michaels was on.  I had read that he was going to be on the show and he would be donating his winnings to a diabetes charity.  I don’t really follow the guy very much. I did enjoy listening to Poison back in the day when I had no clue about diabetes or the fact that the lead singer of the band lived with this disease. I decided to check it out and see what the show was all about. 

It turned out that the show was divided into women versus men.  They each had to run a restaurant for a set number of hours and raise as much money for charity as they could.  The team that raised the most won all of the money.  The show progressed and then they showed a preview of what was coming.  Brett Michaels was going to go low on tv! Now how cool is that?? Not just talk about it but diabetes was going to be real and on tv that night! I called for my youngest son to come and watch the show with me. I told him “Hurry up, Brett Michaels is going to go low on tv! How cool is that???” He thought it was pretty cool and even knew who Brett Michaels was.  

While we were waiting, I had my son test.  He hadn’t been doing much but it was soon going to be time for bed and I wanted to have a clue as to where he was sitting blood sugar wise.  It appears that waiting for Brett to go low had a greater impact in our house than I realized.  When my son tested he was low as well! Crap but at least he was still up when it happened.  He grabbed himself some juice and we sat back waiting for the “low” scene to appear…and we waited.  It turns out that they were showing you what would happen in about another half hour or more on the show! In the meantime, my son retested.  He was now LOWER than when he drank his juice! What the???????  Okay, this time Mom is going to get the glucose source.  “Do you want juice or tablets?”  “Juice would be could” was the reply.  Alright then, a big glass of juice it is.  We would get this low out of the basement one way or another.  

We continued to watch the show.  Brett finally goes low.  He is given a coke with a nice amount of ice and stands off to the side to drink it.  My oldest is watching him saying “He is low! What the heck is taking him so long to drink that? Would you finish that buddy? You are low!”  Okay, that child is well trained! It appeared that Brett recovered from his low much faster than my son.  Three glasses of juice later the child is finally in range.  We sit back and watch Brett Michaels’ reaction as he is told that his team has won and he will get to give $100,000 to his diabetes charity.  Awesome!

He is visibly moved.  As he walks out of the boardroom, he continues to say that he has lost so many of his friends to this disease.  So many of the people that he grew up with have died because of this disease.  My heart breaks.  Here is this man who is out there (and from what I understand some of his reality tv stuff really puts him “out there”), in the public eye and so tormented over this disease that drives us insane each day.  Fame and celebrity may allow him to win a great amount of money for charity but it does not protect him from experiencing the lows of this disease.  Congratulations Brett! I may even have to try to stay awake to watch again next week.

Diabetes Counterculture?

For those of us who have been living in the diabetes world for a year or to, it is very obvious to us that we have our own language and way of doing things. It is common for a mother of a two year old with diabetes who is throwing a tantrum to state in a stern voice, “You had better be high Missy!!” They are used to the odd looks that they receive as people are racing to call Child Protective Services on the parent who seems okay with their toddler being “high”.
I came across a tidbit today in the Children with Diabetes Humour section that fit with this. The family was eating in a restaurant that served alcohol. The five year old with diabetes was hungry and impatient. Mom was looking for alcohol swabs to try and clean something off of her fingers. She began chanting, “Where is my alcohol? I want my alcohol!” For some reason people looked at them a little funny. Those of us who live with diabetes see nothing strange about this.
Maybe we are the odd ones? We are the ones that are very nonchalant about the amount of blood splattered on our sheets and clothing. We have learned to buy dark sheets and avoid white at all costs. Personally, I think my son took the blood thing to a whole new level the other day. I sat down in the living room and on the coffee table was his test kit (and of course a pile of dead strips). I was shocked however when I looked at his lancing devise. That puppy looked like it had been murdered!! It was amazing the amount of blood all over it. I swear I thought it had been part of some sort of deadly attack. When I asked my son about it he was very calm. He saw nothing wrong with it. I was positive that if a police officer had walked in at that moment, he would tear my house apart looking for the dead body. I could give any CSI episode a run for its money in blood splatter!
But our oddness seems to be spreading. Our terms that so often sound like something out of a counter-culture…being high, needing alcohol, having a shot, seem to have made their way into main stream media. Last night I was doing some research on an athlete. He is heading to the Olympics but I really knew nothing about him. I found a bit more information last night but my work ended after reading a CTV article. Now CTV is a respected Canadian television network. They discussed the trials and tribulations of this young man…not only is he obviously a little off his rocker for choosing a sport that requires him to ski for FIFTY KILOMETERS (I can’t do 50 meters!) but he is doing it after numerous sports related injuries and surgeries as well as living with Type 1 diabetes. He is truly amazing but the best, best, best part of the article for me was when they discussed life before his insulin pump. You see in those days he was required to take up to 10 HITS of insulin a day!! I have heard it called a lot of things but even for me, “hits” of insulin takes me directly to the drug world and I have to laugh.
I honestly don’t care if they want to call it hits of insulin. I don’t care if people think I am crazy when I ask if my kid is high and I am not talking about drugs. These are things that we live with and maybe using these words that have become so popular in reference to other things will just make this disease a bit more memorable for people and make the ask more questions.
Off to check and see how many “hits” my son took today….

Battling the other diabetes demons

The other day Liam told me that he had made a new years resolution. I asked what it was. He said to have better control of his diabetes–test more often, pre-bolus and more readings in range. My heart cracked just a little more. I was proud that he was at least talking the talk but I was scared that with puberty the focus on “readings” would lead to some disappointment.

It killed me a little more to know that there was a tool out there that could help him with this. It would give us more data and let us know what was going on when he wasn’t testing but I had decided against purchasing it. Continuous Glucose Monitors continue to be much more popular than days of old. They are much smaller and much more convenient than ever before. Unfortunately they are not covered by the provincial insulin pump program, nor are they covered by Liam’s father’s medical insurance. His parents would have to pay for the system and then the monthly supplies. With braces to be paid for and a family vacation in the works, there is just nothing left for such extras as a CGMS.

Once again diabetes care is reduced to dollars and cents. It becomes about using the tools you can afford not using the tools that would best manage your care but we are more fortunate than a lot of others. Most adults living with diabetes still do not have government assisted insulin pump programs to lean on. They are stuck having to use injections or cover the cost of insulin pump therapy out of their own pockets. Even for those with insurance there is often “caps”. We ran into a cap the other day for test strips. Liam used up more than the allotted $1400 worth of test strips…no kidding we test 10-12 times per day. I couldn’t believe a program would be so limiting but for many that low cap is found on all of their diabetes care supplies.

This kills me. This could be my son in a few years. I am already telling him that he has to look at his employment options in terms of what job will give him the best benefits. That is insane. Its not about what you want to do, its about what will either pay the most or offer the most.

All of this was in my mind the other day as I went to one of the first pre-budget consultations in our province. I had a person who was willing to stand forward and speak to the need for an adult insulin pump program in our province. We were slightly misinformed regarding how the process worked and what we should present. We did get our message out there and were supported by another minister at the table but I still left there wondering if any messages were getting out there. Were people permanently clueless about diabetes?

After the presentation, one of the assistants to the Minister of Finance spoke up and said that some pump supplies were in fact covered for those over 18. The presenter pressed the man to say what supplies were covered but he could not answer her. I was shocked as our diabetes clinic was looking to receive funds from the Diabetes Hope Foundation to help young adults. They surely should have known if there was a provincial program and wouldn’t look to private funding. I could not let this sit. The assistants are known to have a lot of power when it comes to getting things done as they tend to sit in the departments for longer than Ministers. I had to make sure that this guy had his facts correct.

I went up to him after the meeting and explained who I was. I asked him what pump supplies were covered. He said that while the pump wasn’t covered, test strips were. And???? Well it turns out that was it. Test strips could be covered under the provincial drug plan for qualified users. Okay but that helps all people living with diabetes whether they are on insulin, medication or diet and exercise. It does not help someone to maintain their insulin pump. He had no idea. I was scared. This was one of the people involved in deciding on if we should have funding and he doesn’t have a clue about what we are talking about.

The plus side is that there are a few more public meetings available for people to set them straight. The downside is trying to find people to speak out, to take an afternoon or morning of their time and spend it in one of these forums. It is trying to get people to write emails and contact the panel to let them know that this is important and why. Please, if you can help us to help the adults with diabetes in Newfoundland and Labrador. With the right tools and knowledge anything is possible. Even Liam’s goal of better readings. He has already dropped his A1c by .6% and has a very proud mom.

Adult Pump Program

I said it was time to get back to the grind. Time to get down to brass tacks. Time to tackle the big issues and sure enough the government agreed. On Monday I heard the news that pre-budget consultations were beginning at the end of the week. No pressure there! I knew that if I wanted to see an adult pump program in 2010 there was only one thing to do…get to work!

Last year I had worked with a number of people. We had gathered information. We had devised strategies. We were set. We hit the radios. We were in the newspapers. We met with politicians and wrote letters. Unfortunately we also were met with a recession and our chances of expanding the existing insulin pump program were crushed under the burden of a depressed economy.

2010 is a new year. Things are looking up. The economy of Newfoundland and Labrador is better than many. This year we stand a chance if someone takes the lead. I had a group already in mind. I had parents whose children were now young adults. They would be perfect to speak but many of these parents were busy so the best plan of attack was to have literature prepared for them in advance. That is what I did yesterday–I planned, I wrote, and I emailed. I created a letter to be sent to the submissions committee. It could be passed to friends and they could email it as well. It would take minutes but the impact could be incredible. How many submissions could we send in if I sent it and then asked 5 friends to do the same. Those five friends each sent the email and asked five of their friends to do the same. The impact would be huge. Just look what happened on Facebook last week when we were asked to post our bra color for the day. It can be done. I have sent my email…actually I have a few more people to email yet. I know that some of them are forwarding the instructions on to their friends already. This can make a difference.

The cost of expanding the insulin pump program to adults in this province is minimal. There is little infrastructure required as most is already in place for youth. There is little training involved as there will most likely not be a lot of new pumpers. The benefit will be to those already pumping and to the young adults who turn 18 and find themselves with no means to continue their pump therapy. We need to protect them. We need to help those retirees who will no longer have their pumps and supplies covered by their insurance with their reduced “retirement plans”. We need to protect our loved ones with diabetes. If we can improve their quality of care then we will reduce the burden that the health care system will see if they develop complications.

We can do this. You can do this. If you live in the province of Newfoundland and Labrador or know someone who does, send the following email to them. Have them send it to budgetsubmissions@gov.nl.ca Ask them to send it to their friends. Let’s see real public pressure this time around. Let us help the government see sense!

Pre-budget submission 2010: Adult Insulin Pump Program

In 2007, the government of Newfoundland and Labrador became the third province to provide coverage for insulin pumps and supplies to their youngest residents. In 2010, we are asking this government to continue with this mandate towards superior provincial health care and extend this benefit to all citizens of the province living with insulin dependent diabetes.

It is estimated that diabetes will affect over 3 million Canadians in 2010. Newfoundland and Labrador will be the hardest hit as it has the highest incidence of diabetes in the country. The medical costs of those living with diabetes are two to three times higher than those who are not living with diabetes. Direct costs from this disease can range from $1000-$15,000 annually and the cost to the Canadian health care system is expected to reach $15.6 billion this year and $19.2 billion by 2020. By taking a proactive approach to diabetes care through insulin pump therapy, the government of Newfoundland and Labrador can begin to seriously reduce the enormous costs of this disease on the health care system.

When diabetes is managed with advanced treatment options such as basal/bolus insulin regimens, insulin pumps, regular blood glucose testing and Continuous Glucose Monitoring Systems, there is a very real decrease in the amount of time spent in the hospital and a very real decrease in the cost to the health care system. There is a 76% decrease in retinopathy (eye disease), 34-56% decrease in kidney disease, and 69% decrease in neuropathy (nerve disease) in intensively treated patients with diabetes versus those who use more outdated methods. Reductions in these diseases as well as a reduction in hospitalization for poor diabetes control adds up to a large fiscal savings.

Currently residents of Newfoundland and Labrador under 18 years of age are privy to much of this advanced treatment. The current insulin pump program allows the children of Newfoundland and Labrador who are living with diabetes to avail of the best medical care available to them. Sadly, when they turn 18 years of age they must sacrifice their care unless their personal finances allow them to take over their own health care costs. The reality is that many young people cannot afford to do this. They are put in a position where they must choose to leave the province to find either higher paying jobs or ones with more comprehensive benefit packages or stay at home and sacrifice their health with less effective insulin regimens.

The government of Newfoundland and Labrador has the power to change this in their 2010 budget. Expanding the insulin pump program to adults in this province will not have many of the costs associated with the initial program. Many adults who would avail of such a program are already insulin pump users and thereby removing the need for much of the training services otherwise required. In the most highly saturated markets, it is thought that only 35% of those eligible choose to use an insulin pump. In Newfoundland and Labrador, this translates to approximately 500 adults, 30% of whom would most likely have existing coverage. An expansion of the insulin pump program would therefore cost the government a maximum of $1.3 million per year in insulin pumps and supplies.

Insulin pump therapy has a huge impact on the lives of people living with diabetes. This group is at a high risk for depression but insulin pump therapy has been shown to improve quality of life and provide for a better self image.

We therefore respectfully ask that the government of Newfoundland and Labrador expand its insulin pump program to include all citizens of the province who have insulin dependent diabetes.

Diabetes Advocacy

Back to the Grind

January 2010. Where did the time go? I know its a question we ask every year. You would think that we would have the answer by now! Well I don’t have the answer to that question but I do have another question that has been asked before that I will be asking again in 2010…Premier Williams, please, please, please expand our provincial insulin pump program to include those over 18 years of age!!!

Yes, its that time of year again! Its time to roll up our sleeves, bring out our dialing fingers and our typing hands and get back to work. Last year we asked for pumps for adults. We asked that the Newfoundland and Labrador government follow in the path of the Ontario government. Ontario had become a “have not” province and yet still manages to fund insulin pumps for all of its citizens living with diabetes despite age. Newfoundland and Labrador declared itself to be a “have” province and yet new hospital parking lots took precedence over an adult insulin pump program. Now I have tried to park in some hospital lots and I will agree that there can be huge problems there but the reality of 18 year old men and women having to remove their insulin pumps because they cannot afford the supplies is personally a much more grave concern. Parking is an inconvenience. Insulin pump therapy and the benefits it provides has a direct impact on the provincial economy and its spending.

Individuals who are able to tightly manage their diabetes are less likely to end up in the hospital with emergencies blood glucose issues. Individuals who use an insulin pump can more easily handle jobs that involve shift work and therefore can be tax paying members of society. Individuals with diabetes who are able to maintain their treatment method after they turn 18 have less reason to leave the province to seek employment. They can stay home, work in their local economy and still afford to live. In a province that has seen record out migration for longer than it has seen in-migration, you would think that this would be a win-win proposition.

This program is not a costly one. Many adults living with Type 1 diabetes in Newfoundland and Labrador will already have some sort of pump coverage. Adults who were not transitioned to a pump as youth will often be reluctant to start on “new” therapies. Last year’s estimates suggested that a four year pump program, including pumps and supplies for adults without any pump coverage (not including man hours) would cost the government approximately $2million. What is $2 million when compared to helping thousands of adults living in Newfoundland and Labrador?

At the moment, the reality is that young adults who turn 18 and go into the workforce or who have parents without insulin pump coverage are often forced to rely on donations or return to injections. This is not acceptable. Please help us to make the government aware. Let us know if you can help emailing MHAs, calling and getting the word out at pre-budget consultations and more. Lets make the 2010 budget be a budget that will assist those living with diabetes in Newfoundland and Labrador.