The Funding Process – What you should know!

Technically, I should have started writing about this last summer when I first started doing this.  It’s been a year now, and with all I have learned, especially the past few months, I felt this should be shared; so anyone else going through the same processes could possibly have that extra information before-hand and know what will BE expected and what TO expect.

I am speaking about getting an accessible vehicle and going through the processes of applying for the grants that are available to help.  Who would have thought this would take so much and give you stress?  This is supposed to help make things easier, isn’t it?

I am in the middle of all this, so to speak.  I have approvals from 2 of the 3 main grants offered.  What I have learned in, more so in the past month, is unreal!  I thank a couple of gentlemen, Renaud from Motion Specialties and Glen from Goldline Mobility and Conversions, for being so great and forth-coming with information about these processes, that no one else seems to tell you.  I’ve learned a lot from these guys in the past month or so.  Thank you!

Let me begin by giving the top 3 main grants available that one can apply to for an accessible vehicle.

Easter Seals – up to a maximum $3000 – strictly for modification.  Also note, individuals are only entitled to $3000 a year through Easter Seals to cover whatever needs/equipment there might be.  If anything totals more than that maximum, other funding sources will need to be looked at.

President’s Choice Children’s Charity – up to a maximum of $20,000 – PC is a little more lenient in that once modifications are paid for, any remaining of that can be put towards the purchase of the vehicle.

Let me interject a very important point here before I carry on:  Modifications come FIRST!!

March of Dimes – up to a maximum of $15,000 – again, strictly for modifications.  (March of Dimes has the HVMP – Home/Vehicle Modification Program.  The amounts are the same for both, $15,000 for Home modifications and $15,000 for Vehicle modifications)

To apply for any of these, you will be asked if you have applied to any other funding that is available to you.  If you haven’t, you must, for your application to be considered.

Follow along as I update you and take you through this process.  I will be adding what has happened thus far and what I’ve learned and continue to be learning about this process.  It’s a lot I must say and much I’m sure many aren’t aware of!

Stay tuned….

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Rolling Journey – “I do what I can’t”

It all started with a Kijiji Ad…

Do you have the “road trip gene”? Can you put time in your life to travel?

……and this epic journey began for my friend Greg Moore.
“I do what I can’t” says Greg.

Follow along on his journey via his facebook page, his blog and twitter!

Truely an inspiration!  I’m enjoying the pre-trip posts and all that’s happening for him!  I know you will too!  I can’t wait till they actually leave for it!

Greg Moore’s Facebook Page

Greg’s Blog – Rolling Journey

Greg’s twitter – @rollingjourney

 

Good Luck Greg!! 🙂

Life’s growth spurts

WOW!  So much has gone on over the past few months.  I’m  almost at a loss as to where to begin.

This blog entry may be a little different from some of the others, but I just really need to write tonight to help get my thoughts and feelings out.  I apologize in advance if it seems kind of like it’s jumping all over, I’ll try to look back and make it look like some sort of sense afterwards lol

Well, Patrick is growing up!!  He’s going to be a teenager next month!! 13yrs old!!!  Where does the time go??  So much has changed with him over the past year, it’s been amazing!!  I’m so proud of him!  No matter what happens, what goes on or how I feel…I can look at him and my smile returns instantly!

He has been dealing with all the changes so well.  Years ago, he would not have tolerated everything that’s been happening so well.  His personality is blossoming, his communication is coming along so well, my baby’s growing up!

As some of you know, who go through similar situations, appointments can go in spurts at times.  It will seem like for a few months, that’s all you seem to do is run here and there, and the rest of the year, it’s intermittent.  It’s that time of year for us, and with all the advances he’s made, more have been added at this time as well.

Regular check ups with the Nephrologist, including a kidney ultrasound, blood work and a 24hr blood pressure monitor.

Dietition updates, revisions and suggestions for his growth, size and weight.

Regular check up with the Neurosurgeon including a CT scan and Shunt Series.

Dental check up which now requires a specialist appt and a ‘day surgery’ to be booked soon.

In visits with the school OT/PT, a referral to the Orthopedic surgeon had been done and now orthotics are being made.

As well, with him growing so much this past year, he has almost outgrown his seat in his powerchair, so a seating appointment was done as well, and a follow-up to that to be coming.

I also request 2x a year, a “team” meeting at the school.  A meeting where all the therapists, teachers, EA’s, community case managers etc, can be together in the same room and get updated on Patrick’s progress at once.  Either the principal and/or vice principal and sometimes someone from the school board attends as well.  That meeting will also be in 2 weeks.

Let’s see where to begin…updates…hmmm…

Nephrology:

24hr blood pressure to be rescheduled, waiting for a date still.  Ultrasound now shows, 2 cysts on one kidney, 1 on the other.  Hopefully the rate of growth is an indication of its progression and things will continue to be ‘slow’ with that regard.  As many of you may not know, with his syndrome, Meckel Syndrome, polycystic kidneys are typically known and usually the primary reason for loss of life, among other things.  Bloodwork was good, Iron still a little low, so he has been taking iron for a few months now.

Dietition:

Having not had a diet change in years and with his growth and the fact near the end of summer last year, he always complained of being tired, I had a dietition come in to ‘re-asses’ his needs.  After some blood work, a visit with the Ped, she came out and we discussed some concerns regarding his dietary needs.  With not eating ‘regular’ food like you and I, ‘baby food’ was not not meeting his growing needs.  He was lacking in a few vitamins, fibre, protein and iron.

Now taking Iron, a multi-vitamin and adding benefibre and sunflower oil to his meals, his blood work and his health have improved even more.  He is now just over 4 ft. tall and is weighing in at around 69lbs.  We will continue to monitor his needs and his weight, as he’s not as active as ‘most’ kids and we don’t want him to get too large and heavy for his size.  As well, for lifting etc…thank god for ceiling tracks, which I REALLY need to start using more lol

Neurosurgery:

It’s been about 4yrs or so since his last hospitalization for a length of time.  Woohoo!  Appointments coming up for the CT scan and Shunt series.  The shunt series is just an xray to take a look in his abdomen to see that there is enough length still on the end of the shunts to allow for his growth.   This one will be interesting to see because of how much he’s grown this past year.  He’s never needed an ‘extension’ put on previously, as there were issues with the shunts that had come up and they were just replaced.   Those appts are next week, and the first week of June is with the neurosurgeon.  Everything’s been good the past few years with these programmable shunts.  The odd concern with intermittent blockages here and there, but nothing that hasn’t seemed to work itself out so far.

Dental:

The dentist was very pleased to see how he was doing and how is teeth were, which was great and a great improvement from when he saw him previously, 4yrs ago.  When he was 5yrs old he had a gingivectomy done.  He had a lot of ‘gum’ in his mouth, it was covering his teeth etc. so they removed much of it.  Between then and now, 8 teeth were taken out by the Dr. and others have come out on their own.  It’s been noticed in the past few months, what looks like a double set of ‘eye’ teeth.  So a consult was done today with a specialist to look at taking one of the sets out.  Apparently one of them is still baby teeth.  So we await that call for the ‘day surgery’ for that.

Orthotics:

While using his standing frame at school and other various activities and therapy, it was noticed his feet were not ‘sitting’ correctly.  He does not weight bear hardly at all, and what little he does, he does it on his toes.  The only way he’ll stand flat foot is with sneakers on.  A referral to the orthopedic surgeon was made.  One of the first things he mentioned was how big he was for the seat on his powerchair  lol  I told him, we already had an appt to get that looked at and that it was noticed the previous week at another appt.  He suggested for his feet, we try some orthotics to help get his feet more ‘pliable’ to go into the proper position.  To stretch out those muscles behind his knees down to his feet.

He did great when we went for the ‘casting’!!  He’s come so far, as I said, years ago, he would not have tolerated this stuff, it would have made for some very difficult appointments.  He even picked out his own pattern for the orthotics.  First it was fish, then it was planets…then he saw a camouflage pair…well he got excited about those!!  So that’s what he chose  🙂  They will be ready next week as well! lol

Seating:

Some temporary adjustments were made to his seat, until we get a few more things sorted.  He has a little more growth left in the seat he has now, it’s been ‘lengthened’ to it’s max now.  The seat was also tilted back about 5 degrees or so, to help get his sitting straighter.  He ‘rolls’ his pelvis forward when he sits, and it is hoped that with the adjustments that will be made and some verbal prompting, he will pay more attention and sit up straighter in his chair.  It will of course help his posture, his health, and his breathing to name a few things.

He will need new foot plates for his chair to allow for the growth as well, so those are being looked at.  As well, once he gets his orthotics, a follow-up appointment will be necessary to make adjustments for those as well, so that his feet and legs are comfortable and not having any ‘pressure’ points while in his chair.  The orthotics will be worn at school during the day.  When school is done, we’ll work out a ‘schedule’ for wearing them to keep that going.

We are also looking at a possible new mounting system for his chair and his communication device.  We have had one appointment already to try out one, not really what we were hoping for.  Another will be at the centre end of May, and we’ll try that one out as well.  Only thing with this one at the end of May, it’s called the Mount n Mover, and if we decide it’s what we want/need and go for it, it will tie up our ADP funding for 3yrs.  So we want to make sure we get what’s best for his needs.

Well, that was long….and there is still more lol  I’m going to sign off for tonight, and I’ll update again later this week.

If you have any comments and/or questions, please feel free to ask, I’m always happy to hear from you and answer whatever I can, the best I can. 🙂

Good Night, dream sweet!

And the process begins…

Well it was a good day!

I went to the open house this afternoon at the Shoppers Home Health Automotive Division.  It was very interesting and informative.  I found everyone  quite knowledgeable, helpful and very nice.

We got to see a variety of different modifications on some vans and how they worked.

Q Straint was there, gave a bit of history and some information on the tie downs for wheelchairs, types and wheelchair transportation safety.  It’s amazing how many people who travel in wheelchairs are not properly secured in the vehicles.  Wheelchair saftey certainly needs and deserves more ‘exposure’.  We need to get the word out to everyone, wheelchair transportation saftey is important, necessary and mandatory!

I am seriously considering travelling to FL in the fall to get certification with Q Straint.  The certification will be:

What will you experience?
Our comprehensive training seminars provides in-depth, hands-on learning experience that will educate you how to properly use and operate Q’Straint’s systems, and show you how to teach others to properly use them as well.  In addition, each person will:

  • Tour our facility, meet the Q’Straint family and see how our products are made.
  • Learn about the inspection and maintenance of wheelchair securement systems.
  • View crash tests of our wheelchair securement systems and components.
  • Learn rules, standards and regulations that govern the testing and use of wheelchair securement systems.
  • Acquire in-depth knowledge about Q’Straint products for writing specifications.
  • Interact and share your experiences, tips and ideas with other attendees.

To be able to share, help, teach and provide this important resource would be wonderful.

Manufacturer’s and those who actually do the modifications were there on hand to answers questions, show you how things work, different ideas and possibilities and help give you information with regards to your needs.

Many who attended were OT’s and others who provide information, and/or prescribe equipment.  My attendance was two-fold.  I, myself am in need of an accessible vehicle for transporting my son and his powerchair, as well, getting as much information and knowledge that may be beneficial to someone else who may not know where to start.

I do, after all, want to be able to help everyone I can with knowing and finding the information and resources they may need/want.

And so begins this part of the journey for us.  We have received funding help in previous years with other sources for equipment and the like, such as Easter Seals.  This accesible vehicle will be our biggest yet.  It is truely needed and will be such a blessing for us, especially my son!

I’ll keep you posted as to how the process is going 🙂

Feel free to drop a line, ask a question..etc…anytime!

Have a great evening!

🙂