Everything you need to know about RDSPs

RDSP

If you have successfully applied for the Disability Tax Credit, the savings do not end with your tax return. You are also eligible for FREE money from the government! I know that sounds too good to be true! That is why I asked Jane Buchanan, District Leader, Representative of Primerica Financial Services, to explain exactly how easy it is to get FREE money!

What is the Registered Disability Savings Plans (RDSPs)?

People with disabilities and their loved ones face a distinct set of financial challenges throughout their lives. To help address these challenges, the Government of Canada introduced the Registered Disability Savings Plan (RDSP) in 2008. Designed to help build long-term financial security for disabled persons, the RDSP makes it easier to accumulate funds by providing assisted savings and tax-deferred investment growth.

 Who is eligible for an RDSP?

To qualify for an RDSP a beneficiary must:

• Be eligible for the Disability Tax Credit

• Be a resident of Canada

• Be less than 60 years of age

• Have a valid Social Insurance Number

The Disability Tax Credit is available to individuals who have mental or physical impairments that markedly restrict their ability to perform one or more of the basic activities of living, such as speaking, hearing or walking. The credit is also available to those who spend more than 14 hours per week on life-sustaining therapy.

The impairment must be expected to last longer than one year, and a physician must certify the extent of the disability. There can only be one RDSP account per beneficiary, and only one beneficiary per plan.

Click here to see if you might qualify.

What are the key benefits of an RDSP?

RDSP
  • Money contributed grows tax free.
  • Anyone can contribute to an RDSP with the written consent of the account holder.
  • Contributions can be matched, based on family income, with up to $3,500 a year in Canada Disability Savings Grants (CDSG) and up to $1,000 a year in Canada Disability Savings Bonds (CDSB).
  • Carry forward on CDSG and CDSB is available back 10 years or to date of diagnosis.
  • The total lifetime contribution for each beneficiary is $200,000, with no annual contribution limits.
  • If a parent or grandparent passes away and has a financially dependent child or grandchild, they can transfer up to $200,000 of their RRSP/RRIF or RPP to the dependent’s RDSP on a tax-deferred basis.

Who can qualify to be the beneficiary of an RDSP?

To qualify to be the beneficiary of an RDSP, an individual must:

  • Be eligible for the Disability Tax Credit
  • Be a resident of Canada
  • Be less than 60 years of age
  • Have a valid Social Insurance Number (SIN)

How do you maximize your savings?

  • Start saving early. Make it automatic by enrolling in a pre-authorized chequing program.
  • Take advantage of government grants and bonds and contribute every year to get the maximum annual Canada Disability Savings Grant and Canada Disability Savings Bond.
  • Plan withdrawals to avoid federal grant and bond repayments.

What is the Canada Disability Savings Grant (CDSG) and the Canada Disability Savings Bond (CDSB)?

The Canada Disability Savings Grant (CDSG) and the Canada Disability Savings Bond (CDSB) are federal programs that provide payments to RDSPs to encourage long-term savings through an RDSP.

Grants and bonds are available to beneficiaries up until December 31st in the year they reach age 49. Contributions can be matched, based on family income, with up to $70,000 in Canada Disability Savings Grants and up to $20,000 in Canada Disability Savings Bonds.

RDSP with drawls are also known as disability assistance payments. There are two types of payments from an RDSP lifetime disability assistance payments and disability assistance payments.

How do you contribute to an RDSP?

 Once an RDSP is set up there are five ways to put money in:

  1. contributions by the account holder.
  2. contributions by people the account holder has authorized.
  3. federal grants and bonds.
  4. transfers from a qualified or RRSP, RRIF or RPP.
  5. transfers of the accumulated income from a registered education savings plan on which the beneficiary is on both RESP and RDSP.

How do to get money out of an RDSP?

RDSP withdrawls are known as disability assistance payments. There are two types of payments from a RDSP. 

Lifetime disability assistance payments are recurring annual payments that one started must be paid until the plan is terminated where the beneficiary has died. These may begin at any age that must start by the end of the year in which the beneficiary turns 60. 

The other type of payments are disability assistance payments which are lump sum payments made to the beneficiary or the beneficiary’s estate.

When withdrawing funds from the RDSP, it is important to be aware of the 10 year rule. If a person withdraws amounts that were contributed in the ten-year period prior, grants and the bonds from the government must be repaid to them. The repayment is three dollars for every one dollar withdrawn (aka the Holdback amount).

The purpose of the holdback amount is to ensure that RDSPs are used for long-term savings, and it also ensures the government funds contributed are not withdrawn and used otherwise.

Have more questions?

Contact Jane Buchanan, District Leader, Representative of Primerica Financial Services Call: (506) 863-4425 Email: Buchanan.janeann@primerica.com

To see if you might qualify for the Disability Tax Credit, try our short quiz. If you have been putting off filling out your application form, get our easy to follow step-by-step guidebook.

Choosing an insulin pump is personal

chosing an insulin pump

Choosing an insulin pump is a very personal experience. Anyone who tells you otherwise is basically lying to you. To pump or not to pump, to go with tubing or no tubing, it is all a matter of personal preference.

When we first began looking for an insulin pump for my son it was 2002 and he was 4 years old. The only requirement he had was that it could NOT be the blue pump. Everyone he saw seemed to have a blue insulin pump and he wanted to be different. As a parent, I knew that there were other things to consider. At first, however, I wasn’t quite sure what they were.

I read books like Pumping Insulin. I reached out to the parent email list on the Children with Diabetes website. Finally, I consulted with friends and began to compile my own list of features that our insulin pump had to have.

Get our insulin pump shopping list ebook.

It was important for this to be the most up-to-date insulin pump. I was paying for this pump out of my own pocket and would have it for the next four years. I wanted the best technology for my money.

My son was only four so it had to be able to deliver very small amounts of insulin. Because we were new to pumping, certain alerts were also going to make our journey a little easier.

I didn’t order the blue pump. I didn’t order from the rep who became a lifelong friend. The other rep whom I met for coffee and answered every question I had, also did not get our business. I felt horrible not purchasing from either of these amazing people but pumping is personal. I had to go with the pump that fit us. They understood.

wearing an insulin pump

I chose a brand new insulin pump. It had everything that we wanted in a pump. It had features that he would need in the coming four years and features that were perfect for our life at that time. This was an insulin pump that was ideal for our family.

Let me repeat that…it was ideal for our family. It was not ideal for everyone’s family. This was a pump that was not ideal for every person with diabetes. That is the thing with insulin pumps and with diabetes in general…everyone is different. Everyone’s needs, wants, and budgets are different. The technology has to fit the person.

If you are looking at an insulin pump for the very first time, here are five things to consider…

insulin pumps

1. Do you want tubing or not?

For some people, being attached to something 24/7 can be overwhelming. This might mean that an insulin pump is not for them. It may also mean that they might be better suited to a pump that has no tubing like the Omnipod. Other people find that having a pump at the end of their tubing allows them to know where their “pancreas” is at all times and gives them peace of mind.

2. Is a Continuous Glucose Monitor important to you?

Do you need a continuous glucose monitor with your insulin pump? Are you already using one? Do you want a pump that “talks” to your CGM? Do you prefer the Flash Meter system?

There are some insulin pumps with CGMs built into them. This can be a pro or a con depending on how you look at it. It is great to not have to be concerned about carrying or dealing with another device but technology is changing so rapidly that it can be nice to have a stand-alone device that is more updated than the one integrated into your pump.

3. Does it update itself?

As I said, for me it was vital to have to most uptodate technology. My thinking was that if I was spending that kind of money, why did I want a Kia when I could get a Cadillac for the same price?

Insulin pumps are constantly changing. New models are being brought to the FDA and Health Canada on a regular basis for approval. Some people, like me, want the most advanced technology for their money. Other people are okay with any insulin pump as long as it delivers insulin. Again, an insulin pump is a personal choice.

Currently, in the Canadian and US markets, there is only one insulin pump company that offers upgrades without having to purchase a new insulin pump. A Tandem insulin pump has the capability to remotely update its software without the need to purchase an entirely new device.

4. How much insulin do you need?

The reservoir or insulin cartridge is what will hold the insulin in your pump. Depending on your age and needs, size can make a huge difference.

Teens for example, tend to go through a lot of insulin. An insulin pump with a 2mL(200 unit) cartridge will not last them nearly as long as a 3mL (300 unit) cartridge. Changing the reservoir takes time out of your day and that can be annoying to some. If you hate changing out your insulin reservoir, this might be something that you have to think about.

Also, depending on your age and lifestyle, basal rates and bolus amounts are important. The basal rate is the amount of background insulin that your pump is delivering to you every hour. Each pump delivers that background insulin differently and has different maximum and minimum amounts.

To get a rough idea of how much background insulin you might need, look at the amount of long-acting insulin you are currently using and divide it by 24. This is a very rough guess and will change with an insulin pump but it will tell you if you need smaller or larger basal rates.

Bolus amounts are the amount of insulin that you will inject (or bolus) to cover your meals. If you are a big eater or you have a high carbohydrate to insulin ratio, you are going to want a pump that can handle that. If you are someone who is very sensitive to insulin, then small, precise bolus amounts will be very important to you.

5. What sort of alerts will you need?

Will you remember when to do an infusion set change? Do you need a reminder to let you know if you forgot to take insulin to cover a meal? Is it important to you to have an alert that lets you know if you are dropping low or spiking during the day?

These are just some of the alerts that are found on some of the insulin pumps currently on the North American market. When searching for an insulin pump, take a look at the alerts and see which ones you will use and which ones you can do without.

Choosing an insulin pump can be overwhelming. Make a list of what you require in an insulin pump. Think about the five key things I mentioned above. Add your own features that you feel are important like screen size and temporary basal patterns.

Once you have your list (we have a great checklist of features here), contact your local insulin pump reps. Contact all of them, not just the one from the pump company that you know the most about or the one that you are leaning towards. Get to know them. Get a feel for how they treat you. Learn about their payment plans and customer service. Will they let you try out the pump?

Get our questions to ask your pump rep.

Make sure that you choose the pump that is the right fit for you. You are the one who will have to deal with it 24/7 for the next 4-5 years, no one else.

If you are unsure where to start when looking for an insulin pump, our insulin pump workbook can help.

All Children with Diabetes are still not safe in school

school1It has been over 15 years since I was first asked to take part in discussions surrounding the issue of children with diabetes in schools.  I still speak publicly on the issue. I still assist parents but I honestly thought that after 15 years, more insulin pumps and other awareness activities that things would be vastly improved–that all children would be safe in school.

Things have changed.  Years ago, very few schools had policies in place protecting our children with diabetes.  Very few educators knew their roles and parents often struggled as well.

Today there are provinces that  have stepped up to the plate offering guidelines and even legislation surrounding this issue.  Sadly there is still a long way to go.  There are still parents who do not feel safe sending their children to public schools.

Alberta updated their guidelines in February of 2019

I once looked to the US as a standard to achieve.  The rights of their children with diabetes are protected under the American Disabilities Act.  That had to count for something!  A lawyer friend of mine reminded me that while this was a just a law, enforcing it could often be just as frustrating and overwhelming for families in the US as it was for families here in Canada.

The moral? Keep fighting. Keep educating, Continue helping and that is what I am doing.

Many years ago, just after a change in rulings on the Disability Tax Credit, I met a wonderful lady. She worked for what was then called the Canadian Diabetes Association.  She was there first formal advocacy employee.

Our sons were of similar age.  She listened to our struggles and empathized.  Over the years we have worked together on certain projects and simply managed to touch base now and then to see who the other’s family is faring.   Yesterday she sent me an email asking for help.

She too is still working on the national issue of safety for children with diabetes in schools.  There are still many families who are fearful of sending their child with diabetes to school.  There are other families that send their children to school but are constantly at odds with the system to achieve optimal care for their children.

This saddens me greatly.  If you are one of those families that are still having issues with your child with diabetes in school, please comment or message me . I will pass your information along to my friend and she will contact you. Hopefully, together we will be able to highlight the problems and finally work towards a resolution to this issue for everyone.

It Will Happen and It will be okay–Transitioning to Adult diabetes Care

Jump day
by John Haig

It will happen and it will be okay. That’s what I would tell myself if I could talk to the diabetes parent that I was 15 years ago.

You see, once upon a time I could tell you what my son’s bg level was at 3am. I could tell you what his reading was before breakfast. I knew if he had run high or low during school. I would be able to give you his pre and post supper glucose readings. I knew it all.

I knew when his last site change was. I knew what his last A1c was. Years ago, I could tell you when his glucagon kit was going to expire and how many carbs he ate with his last meal.

Today, I can tell you that my son does test his bg levels. His last site change was just the other night. I know this because he asked for my help.  I know that he sees his diabetes doctor again in April. I know that he has some insulin in the fridge.

I have no idea what his last A1c was. His current basal rates are a mystery to me. It’s a real challenge for me to use his insulin pump.

Years ago, I would never believe that I wouldn’t know these things. I swore that I would always test my son at night as long as he was in my house. I would be hands on in my son’s diabetes care  forever. I was certain. I was wrong.

If you are like I was, you are having a stroke reading this. You are probably thinking…Not me! I will know everything regarding their diabetes care always! I thought so too.

For the bulk of his childhood,  I knew every carbohydrate that entered my son’s mouth. I wrote down every exercise that he did and how it impacted his readings. I micromanaged my son’s type one diabetes like nobody’s business. His care would take me  40 hours per week.  It literally was a full-time job. Keeping my son alive and healthy was one of my top priorities.

The health of my children is still very important to me but this strange thing has happened–they have become adults.  As an adult, my son has asked that I don’t test him at night.  Sadly he wakes up a lot during the night now and tests himself.  He doesn’t see the sense in bothering me as well.

Because my son is an adult, he comes and goes when he pleases.  He treats his lows at work. He programs his pump while he is at school.  My son is completely in charge of his diabetes care.

It was terrifying at first I will admit. I had a need to know.  He had just as strong of a need for me not to know. He would be vague with his answers about bg readings if he answered at all.  It didn’t matter if I was mad or upset.  It was his condition to deal with and he would quietly show me that he could handle it….and when he couldn’t he would ask me.

As I have watched him handle his diabetes care,  I have been amazed.  We still occasionally share carb count guesses. I will look up the carb counts in certain food for him.  I will suggest a temporary basal when he is working long hours.  He will tell me what he has already done.

My role in diabetes care is now  on the periphery.  It shocks me that I have managed it but I have.  One day you will step aside too.  It will be hard.  How far you step will be between you and your child but eventually you will no longer know how to work their insulin pump either.  One day you won’t know their A1c but they will still call you when the going is rough–for you or for them.  For me, that remains a  huge comfort.

I have gone from the most hands on parent on the planet to an average mom.  Diabetes no longer is in my every thought. I now only think of it every few hours.  The most amazing thing is that I am somewhat okay with it all.  Don’t get me wrong, the control freak lives on and would love to know more but my son is an adult.  As a young adult, he has taken ownership of his diabetes and Mom is only allowed glimpses when he deems it okay.

A step in his socks

gluten-free-baking1-e1449977998432I know it’s not the same. I can’t begin to say that I fully get it. I cannot say that I am walking in his shoes so I will just say that I feel like I may have taken a step in his socks.

Over the past year, I feel like I have had  a very small glimpse into some of the emotions that my son and others living with diabetes must experience–stress, worry, isolation and more. I can see where it becomes overwhelming and you need to forget.  This is why…

Last New Years I was given the “gift” of a gluten intolerance. If I eat gluten I get physically ill. This came seemingly out of nowhere.  I told my doctor that I was too old for this to happen to.  She just laughed at me and told me to live with it.

It turns out that “living with it” is not as easy as one thinks.  I now have to watch every single food item that I put in my mouth.  (Hmmm, sound familiar?) I have to read every label (Yes, I should be used to this but now I am looking for elusive sources of gluten instead of carbs).   Suddenly I have had to relearn how to prepare food (and cooking used to be a joy!)

Going to a restaurant is no longer a source of relaxation.  With a gluten intolerance, I have to be on alert when we go out.  I don’t have to  guesstimate carbs, I now have to  guess if there is gluten in my desired meal. The result is that there are often restaurants that I simply cannot eat in. Emotionally it can be overwhelming and depressing….why can’t I be “normal again”??

There are times that I feel perfect…usually when I have successfully avoided gluten for a number of days.  Those are the days that I stop thinking about gluten. I don’t pay as much attention to the labels.  I begin to think that “maybe its really not an issue.”  I get sloppy.  I end up eating something that I shouldn’t.  I feel like crap.  I kick myself and then I think…”Is this what my son does? Does he feel okay and somehow forget that he needs insulin?  Does he just go about his day and not worry about a test because–well heck he feels great!?”

Did my lecturing just compound the issue? I don’t need someone telling me “Well Barb, you know that you shouldn’t have tried that chocolate without reading the label”.  I know these things but sometimes I just get complacent.  I just don’t want to think about it…and then I pay dearly for my lapse in judgement. I am sick for at least a day.  I do become more vigilant after my slips.

I have good days.  I will have bad days. No amount of saying “I am too old for this” will change it. I have come to realize that this is now part of me.

It’s not the same as living with diabetes.  I don’t have to test. There is no pump attached to me.  I don’t have to worry about balancing insulin and food. I won’t pass out from too much gluten.

In some ways it is similar though….I have to read every label.  I am not counting carbs but I do search for things like wheat, malt vinegar and “may contain gluten”.  I feel overwhelmed when I try to bake. None of my recipes work anymore.  They all have to altered again…before it was to accurately count the carbs, now its to carefully substitute out all wheat.

I feel stressed when I step inside a restaurant. My boyfriend is fabulous. He asks every server if they have a gluten-free menu before I get a chance.  I still worry.  What if they make a mistake? What if they give me the real pasta? What if they don’t realize and give me a sauce with gluten in it? What if I order the wrong thing? (and I have)  When it goes right, I feel the same glee as I do when my son and I guess the correct carb counts in a restaurant.

As I said, it has been a year.  Some things are getting better.  I have an incredible network of friends who have already been down this road.  (There is an increase risk of celiac disease if you also have Type 1 diabetes) There are great Facebook groups and many more options in the grocery store.  I have a cousin who is an amazing Gluten Free baker.  They all provide tips and support.

This year has allowed me to look at things just a little differently.   I have lived with diabetes in the house for close to 17 years.  I know the terror of nights. I know the frustration of unexplained highs and lows. I am all too familiar with the stress as diabetes interrupts planned activities. Gluten issues don’t come with those stressors but they do have plenty of their own.

Gluten intolerance has allowed me to glimpse at what its like to always have to be aware around food. It has given me a new understanding about feeling good and “forgetting” about your condition.

I hate both conditions.  My son hopes he never has to live this way. I do too but I also wish he wasn’t living with Type 1 diabetes.  The only bright side to my gluten issue  is that it has given me a small glimpse into some of what he has gone through on a daily basis for most of his life.

 

Misconception isn’t funny

low

Last night ,I was watching a promo for a new comedy show.  The show looks like it will be really funny.  I have seen some of the clips that the network has shared over the past few months. I laughed at a lot of them.  Tonight however, one clip caught me off guard and I wondered if I was just being silly.

The scene had a woman trying to go into a room.  The room was already filled with people who were in some sort of conflict.  She told the people in the room that she need to get in because “I need to get my insulin”.  My ears instantly perked up. There is going to be a character on the show who needs insulin??  How cool was that!!

Sadly my excitement was short lived.  When the lady saw the turmoil in the room she exited stating that she would just go and “eat an orange”.

Those of us who live in the world of diabetes know that if she ate the orange she would need insulin…unless of course she was low and then she didn’t need the insulin to begin with.

I get that it is just humor.  I further understand that 99% of the audience won’t even notice the error.  It still bothered me.  I sent the show a message telling them of the error.  So far they haven’t answered.

Diabetes can be funny.  When my son shot blood across the table when testing his finger, we all laughed…yes its a bit morbid but we laughed.  I don’t think that mis-representing any condition is funny however.  Diabetes has many, many myths surrounding it.  People with diabetes (both Type 1 and Type 2) face them every day.  We don’t need mainstream media fueling the fires with more false information.

I don’t think that I am being overly sensitive.  I have read of other people with diabetes watching the show and being equally annoyed.  I am all about laughter and fun but I really, really don’t like it when it is done at the expense of others.

Some will say, lighten up. No one was hurt by this.  That is not exactly true. What happens if my son is low at work? Will his colleagues think that he needs insulin to get him through rather than passing him a juice box? Misconceptions are dangerous for those living with the disease.  People living with diabetes live with enough blame and guilt.  We really don’t need mainstream media continuing to blur the water.

The Talk

My son is now an adult.

He is living at home again while he does some upgrading and starts training for his chosen career.

Its hard to believe that my baby is an adult but he is. The law says so. He has his own car. He can drink…and to my surprise (because he is my baby) he does drink.

He seems to be responsible…well as responsible as you can be at his age. When he drinks he doesn’t drive. When he goes out, he brings along a friend who is a designated driver and doesn’t drink. He spends the night at that friend’s place so that he doesn’t drive again until he is sober.

He brings his test kit. He has his spare supplies and extra glucose with him.alcohol-drinks-1

He has a system when he drinks. He has already learned how certain beverages effect his bg levels. He is pretty confident in what he is doing.

How do I know this? Because he told me.  We were discussing his night out.  I was giving him a little bit of the information that I had learned about diabetes and alcohol thanks to places like the Diabetes Mine.  He told me his experience.  I asked what he would do if heaven forbid, he got falling down drunk.  How could he handle things? He told me that he had been there. He began to tell me what he did.

I was shocked.  This was my little boy. I began to walk out of the room. I didn’t want to know. I didn’t want to think of my baby as drinking. I really didn’t want to think of my little boy getting drunk. He stopped me.

He told me that I had to know. It was important for me to understand. If I didn’t listen to him, I would worry more. He wanted me to know that he was listening, learning and growing up. It was going to be okay.

I listened. I was proud that he would have this dialog with me. It was candid. It was honest. Nothing was hidden to make me feel better. It was raw.

It was tough to hear. It was good to hear.

He has stumbled. I have cried. He has learned. So have I. Together we will continue to get through.

I am glad he feels that he can talk to me.  I am glad that he has learned. I am proud that he wants me to be okay as well.

New Age, New Worries

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I hate to think about it.

I can feel my stomach start to churn.

This isn’t right.

My son is 19.  He has stumbled along, trying to figure out what he wants to do with his life.  It has been a challenge but he is meeting it.  Slowly he is  making his way.

Unlike his brother who finished high school and instantly knew what he wanted to do in terms of a career, my youngest son has been a bit more uncertain.  He has applied for a variety of trades but finding the right fit isn’t easy.

He needs a job with great benefits. He wants something that will interest him.  He needs to be employable in a slumping economy.  It can be a challenge for any young person.

He isn’t just any young person however.  He is a young person with diabetes and  diabetes doesn’t care that he doesn’t know what he wants to do with the rest of his life.

Diabetes doesn’t care that he may soon be removed from his parent’s insurance plan.

Diabetes doesn’t care that he doesn’t have a job with insurance.

Diabetes doesn’t care that his provincial drug plan offers very little assistance.

Diabetes demands that he check bg levels multiple times per day.  He still must find insulin to use daily. He is required  to make appointments and order insulin pump supplies. Diabetes doesn’t care how he does any of these things but if he wants to live, he has to find a way.

He is just 19.  He should be concerned with going to school. He should be concerned with finding a career path.  He shouldn’t be concerned with health care costs.

The reality is that those are things that he has to be concerned with however.  He is still in school but will insurance still recognize this? I am not sure.

There is some help for pump supplies in our province but because of some of his own mis-steps, his coverage has lapsed. Together we will work on getting him back in the program but it will take time.

There is a provincial drug plan.  They  allow you a set number of test strips for the year but some strips covered will be better than none when the time comes.

Some days the reality of life with an expensive illness…well its overwhelming despite the fact that I am not  the person who has to test or inject daily.  He understands that it will be expensive.  This is his life. It has been for loner than he can remember. It still makes my heart ache. I still wish that I could take it away.

I can’t. We will do our best and that will be fine.

Tips and Tricks…day 5 of Diabetes Blog Week

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Oh my goodness, today’s prompt is seriously probably the hardest of the week.  Share you best diabetes tips and tricks. Do I have any? We put one foot in front of the other hand hope for the best. Does that count?

Okay, tips and tricks…well, the first trick I learned was when my son was first diagnosed.  We didn’t have Rufus the bear with diabetes but I knew that my toddler needed to feel that he was not alone. The way I did that was to give Elmo diabetes as well.  He had a stuffed Elmo that somehow made its way to the hospital with us.  As I was learning to inject a doll, I have my two year old a needle and supervised him giving Elmo injections.

Writing that sounds crazy. I gave a 2 year old a needle? I did. It was a pen needle and the tip wasn’t in it but I gave him the pen filled with insulin and let him pretend to give his stuffed toy an injection.  He was making his friend feel better just like I was helping to make him feel better.  It worked for us!

As he aged, new issues came up and bribery was introduced.  Okay, we didn’t use the term “bribery”, we referred to it as rewards.  If he ate his breakfast without a fuss, he received a sticker.  After a certain number of stickers a reward was earned.  It worked for a bit.

What tips did we use for storing supplies? Well for us storing diabetes supplies was relatively simple…totes.  We have totes on wheels and when they were too full, we also had totes that went under the bed.  This allowed us to have a large supply of glucometers and pump supplies for times when insurance coverage was not available. My son still has both the cart and the tote.

Finally our rule for travel is simple…always pack twice what you think that you will need and then throw in a little more!  Whenever my son travels, he seems to experience a lot more highs than normal.  We do more site changes.  We bring more supplies.

I have also learned to store insulin in more than one place when you leave home.  We traveled across Canada once many years ago.  All of the insulin was in the cooler.  The cooler was somehow put on the heater setting.  All of the insulin was at risk of being spoiled. I never did that again. Insulin is now scattered among bags for safe keeping.

The final trick we have used is all my son.  When your sites are starting to peel up but the insulin is still flowing, you don’t want to make a change and your readings are still good–use duct tape! We have medical tape.  We have opt-sites.  My son uses duct tape to hold his sites in place.  Yes, they do make a mess of your skin after but they do hold your site in! –You may be a diabetes redneck when??

The Healthcare Experience…Day 4 of DBlog Week

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

health-insurance
Today’s prompt is a tough one and a very interesting one.  I no longer have a lot of  dealings with the health care system regarding my son but over 16 years we have definitely had highs and lows.

Our initial foray into the world of diabetes, involved a horrific healthcare experience–my son was misdiagnosed, sent home and almost died.  Thankfully that was probably the worst of it (I know it couldn’t get much worse could it?).  The upside was when he was finally diagnosed, we were given a doctor who truly helped to set us on a course for success.

My son’s doctor believed in the most advanced treatments.  He encouraged me to learn and to try new things.  The rest of our diabetes care team was the same.  They taught us carb counting when others were still using exchanges.  Equally important, as I began to learn and explore the world of diabetes, they were eager to learn from me.  That was both empowering and endearing.  They cared–we were a team.

Not everyone we encountered “got it” however and it has been important for me to try to empower my son in his own care.  Soon after my son moved away, he had some sort of an attack (for lack of a better word).  The doctors worried that it was his appendix but they never did establish what had happened.  He was rushed to the hospital and the health care team attempted to manage his diabetes.  My son told them point blank “You deal with what brought me here. I will handle my diabetes.”  I was very proud.  My son is quiet.  It was very important for him to be able to do this for himself.

He is now a young adult.  He now sees a new team of doctors.  He faces new challenges…and as a mom on the sidelines it is driving me crazy.

He doesn’t feel that the new team has any idea about his diabetes care.  From my limited knowledge, I believe it is made up of people used to dealing with older adults with Type 2 not young people who have lived with Type 1 all of their lives.  Because of the area that he lives in, he is unable to “fire” them and find a new team.  I have reminded him to politely let them know that he does know what he is doing.  If he is showing them readings like I saw when he visited me, they prove that he does have this down pat.

For the moment, he is biding his time until he can move to a new team.  I am hoping to see him move back with me this fall to attend trade school. I have a friend who is now a CDE for adults. I am hoping to be able to get him in with her. I think it will be a huge help to him on all levels–she is a nurse, she lives with diabetes, and she has had diabetes since she was his age. A win-win-win.

In the meantime, the issue does continue to frustrate me.  Youth with diabetes have enough challenges.  They face many issues with transitions and lifestyle changes. It would be nice if more of their diabetes teams could be supportive and work with them.  There has to be a mutual respect of knowledge.

I continue to remind my son that the health care providers have something to offer and he must share with them that he is knowledgeable as well.  He finds it a challenge.  He feels his knowledge is far greater than their’s and sadly, it may well be true.  I then remind him that he has been very lucky. Over the years he has sat and spoke with some of the greatest diabetes minds in North America.  This is not a privilege that everyone has had.

Is there an answer? Balance. I’ve been reading on other health care systems around the world for inspiration, I just finished the faq about EHIC and I truly wish that there was more balance in our care and insurance systems.  Patients are learning more now through their own research and through the experiences of others.  Doctors and educators are also learning but there must be a partnership.  Neither should be in a power position.  Both should be working toward the common goal of best physical and mental health for the individual.