Paying for a wheelchair modified van/lift/ramp

(These resources are for Utah)

Rebates from Car Manufacturers on a new vehicle
If you buy a new vehicle from the dealer and modify it, a lot of dealers will give you a rebate.  Here are a few examples.  https://www.ride-away.com/manufacturer-mobility-rebate-programs/

Assistive Technology Foundation (Zions Bank Low interest loan)
1-800-524-5152
http://www.uatpat.org/
Here is another link to the same program http://www.uatf.org/financing/
You turn in the application and they help you get a low interest loan through Zions bank.  The loan will be 1/2 of prime and the Foundation pays the other half of the interest.  They will help pay for a vehicle and/or modifications.  The vehicle does not need to have the lift/ramp already installed.  For loans over $10,000 you can usually get a 5 year term.  It takes about 1 week for the loan to go through once all of the paperwork has been submitted.  Once the application is complete it is good for 90 days (you have 90 days to find a vehicle).  You can use the loan more than once.

Independent Living Centers (locations throughout Utah...each county has a designated one)
http://www.usor.utah.gov/division-of-rehabilitation-services/vocational-rehabilitation/independent-living-il/centers-for-independent-living
They will pay to modify a van with lift/ramp/tie downs/etc.  They will not pay for the van itself.  They will only do modifications on a van that is 1 year old or less.  They have a long waiting list.  They get money each July, but you will need to apply well before that.  

Angels Hands 
https://angelshands.org/
It sounds like they may help with the purchase of the actual vehicle.

I sent the following question to Angel's Hands...

Do you help pay for a wheelchair modified vehicle?

This is the response I received...

Mikael,

Thanks you for your inquiry. Angel’s Hands Foundation’s mission is to improve the quality of life for individuals with rare or undiagnosed diseases. If you believe you fit into that mission, the following steps are required:

1. The family must register with Angel’s Hands by completing the online ‘Registration Form’ under the AHF Forms tab.

2. A request for assistance must be submitted by completing the online ‘Assistance Request Form’ under the AHF Forms tab.

a. Proper documentation must be attached to the form or mailed within 30 days of request.

The request will be screened and submitted to the board for consideration.

Thanks,

Dennis

Steelman Family Foundation

Helps pay for modifying vans.  Does not often pay for the van itself.  Has certain requirements that the van must meet such as..vehicle must be the current body style and under 50,000 miles.  Rear entry is available up to 80,000 for some vehicles.Has an open application period.  In 2019 it will

open Nov 1, 2019.  https://steelmanfamilyfoundation.org

Contact your local Eagles/VFW/ Elks/Lions/ etc...  They are often looking for a good fundraising idea.

Create a GoFundMe account and'or have fundraisers to help raise money.

If you are on the DSPD waiver, they will pay to modify a van with lift/ramp/tie downs/etc.  They will not pay for the van itself. It takes several months to go through the approval process.

Karl Malone Foundation has purchased vehicles before.  

(this may be an inactive non-profit...it was difficult to track down online)

Karl Malone Foundation for Kids

Po Box 429

Bountiful, UT 84011

How have you been able to pay for a wheelchair modified vehicle?  Do you know of any other resources?  Please comment below.

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Pulling out tubes, etc...

If your child is capable of pulling out NG tubes/IV lines etc, you may want to invest in some "no-nos" otherwise known as pediatric arm immobilizers.  Here are a few examples...

http://www.medi-kid.com/index.php?p=catalog&parent=1&pg=1

I have used the pedi-wrap brand for both arms and legs on Ellie.  They do not seem too uncomfortable.

They are also good to give a good long stretch (such as overnight) for kids who have tight arms and legs.  If they have a hard time sleeping with them, try putting the braces on every other night alternating on every other side.

What have you tried to keep your kids from pulling out tubes?  Please comment below.

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Teaching Hospital and Residents/Fellows/etc...

My local children's hospital is adjacent to a medical school.  Therefore, the children's hospital is a "teaching hospital".  This means that when you go to appointments and the Emergency Room and are inpatient and outpatient there are LOTS and LOTS of people checking on your child.  This is not always a good thing.

Let me paint you a picture.  Your child is sick, you are afraid they are getting to be a little more complicated than what you feel comfortable with at home.  You know from experience that if you go to your Primary Care Physician they will send you for more tests at the hospital anyway, so you skip the PCP.  You decide to make the drive to the children's hospital to have them check out your child.  You pack up pretty much the entire house to make the trip.

The only way to see a Dr. today is to go to the Emergency Department.  It stinks, but that's the way it is.  Pretty much all specialists that you would want to see are booked 3-6 months out.

The shortest I have ever had an ED visit is 2.5 hours, but typically they are over 4 hours, sometimes a lot over 4 hours. Most of the time is spent waiting, waiting and waiting.  Waiting for tests to be run, waiting for Dr.'s to come by, waiting for IV fluids to go in, waiting for meds to kick in, waiting so the child can be observed, waiting for rooms to become available, etc.

So to summarize...

• You have just changed and dropped everything your schedule to come to the hospital (not just for a few hours, but you had to look ahead for a few days and even weeks in case they are admitted inpatient)
• You are worried about your child being sick and/or wondering if they might actually die
• You had to make arrangements for all of your other children and worry about how they will cope with you being gone...yet again
• You packed up your entire house in case you end up having an extended stay at the hospital
• You are bored/tired/stressed from so much waiting
• You are thinking about all of the germs in the hospital
• The unknown is terrifying...what is wrong with my child?  Will they live?  How long will this hospital stay be?  Are we thinking ICU or floor?  Are we going to need more surgery?  

Then comes the kicker...the RESIDENTS.  (When I say Residents...I mean residents, fellows, interns...pretty much anyone but the Attending Physician).

I know they are going to medical school.  I know they need experience to become a Dr.  I know they are trying to help.  But here are some reasons why residents/fellows/etc are so frustrating.

• They think they know more than you.  They try to explain things that...ummm...duuhhh...I pretty much know more than you (especially regarding my child).  I am not new to this game.  I have been around the block more than a few times. And honestly, half the time the resident does not even know what they are talking about.
• Because they think they know more than the parents, they do not listen to you.  A good experienced Dr. will compliment the parent and then ask  "You know your child, what do you think is wrong?"  or "You have done this before, do you have any feelings about what we should do?" or  "You are a very capable parent, how can we help you?" or "  You are doing a great job, how has your child responded in the past?"  Residents do not compliment and they do not ask for the parents opinion or insights.  Residents are trying to prove their own knowledge and worth.
• When you come to the emergency department this is how many times you have to tell what is going on (I am not exaggerating)

1.  Nurse or Medical Assistant when you check in (brief summary of symptoms)
2. Registration (brief summary of symptoms)
3. Nurse assigned to your child (I do slightly more than the brief summary...but definitely not the full story)
4. Resident
5. Respiratory Therapist (If RT is needed)
6. Intern (Sometimes)
7. Attending Physician
8. Specialist (if a specialist is needed)
9. Phlebotomist (not joking...they ask you what's going on...once again a brief summary)
10. Other techs (CT scan, MRI, X-ray, etc...the brief summary again)
11. If there is a shift change while you are in the Emergency Department start over and repeat numbers 3, 4, 5, 6, 7, 8

Then if you are admitted it continues...

12. Nurse on floor

13.  Tech on floor

14.  Resident

15.  RT

16.  Intern (almost always)

17.  Attending Physician

18.  Specialist (if needed).  If more than 1 specialist, repeat story for each specialist.

Here are some suggestions to prevent "Story Fatigue".  (Yes, I just made that up...but I'm sure it is a real condition)

• Have a printed list you keep updated with the child's medications, diagnosis, allergies, surgeries and hospitalizations.  Bring it with you and ask the nurse to photocopy it for you.  Let the nurse use the copy to update the information she needs, then ask her to give it to the Dr.  Or keep the copy and give it to the Dr. yourself when they come in.  Having this list frees space in your brain to think about the critical issues at hand, saves time and prevents things from being forgotten.
• Write down everything you can remember before the attending comes in.  (sometimes I will use my voice recorder on my phone while I am driving to make notes about things I want to tell the Dr. then write them down when I have a minute).  
• You should write all relevant previous history relating to the current condition (ie:  she has a shunt and she is acting the same way as when it failed last time)
• Recent history relating to current condition in chronological order(ie:  She has been sleepy since last Sunday, she started coughing on Tuesday, and today she started needing 3 liters of oxygen)
• Any one else sick at home and symptoms
• In the ED, when the first resident type person comes in, (as long as your child is not in a really scary/bad place) tell them " I know that I will have to wait longer, but I would prefer to tell the story ONCE when they can have the "attending" present."  And truly, if they are in a scary/bad place...then your child probably met "shock protocol" and the attending is already there. 
• If you don't want a resident working with your child you can refuse.  I do not choose this option, usually I just say I want the attending present before telling my story.
• Once you get the attending present and are ready to tell your full story for the first time...have the voice recorder ready on your phone.  Record yourself telling the story (while going through all of your written notes).  Keep recording when the Dr. asks some clarifying questions at the end.
• Once you get transferred to the ICU or the floor, and they start asking for the story...just pull out your phone and push "play" on your voice recorder to tell your story for each person that comes by.

What tips do you have for dealing with residents?  What tips would you offer residents in their quest to becoming a "good" doctor?  Please comment below.

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Grandparents grieving and how you can help your grandchild with disabilities

Ellie was diagnosed inutero by ultrasound.  I remember walking out of the hospital and falling into my husbands arms and SOBBING uncontrollably in the parking lot.

We went home and I didn't even know how to process the news.  It was inconceivable.  How could this have happened?  Why me?  How could I possibly get through this?

Then after a few hours of crying, calming down and thinking I had come to terms with it (yeah right!!!!).  My husband and I decided we needed to call our parents and tell them the news.

When I called my parents my tears started coming again.  It was really really hard to break the news to my parents.  I'm not sure why?  I think I was having a hard time accepting the diagnosis, so how do explain something you can't even understand (emotionally) yourself to someone else.  Both of my parents were crying also.

For the first little while after the diagnosis (and maybe even now) I felt really defensive.  I guess I thought people would be critical and not love Ellie if she had disabilities.  But I felt like I already loved her before she was born.  Maybe I was wondering if I, myself, really could love someone with disabilities.  And of course I think I was worried if I would even have a baby, since we were told she could be still-born or die in the first year and half.  I felt like I had to be really on guard and stand up for her from the very beginning.  Maybe this stems from the fact that the perinatologist (Dr. for the baby while you are still pregnant) suggested that we could abort Ellie.

My Mom (Ellie's Grandma) has told me that it is really hard as a Grandparent of a grandchild with disabilities.  You have to grieve double.  You grieve for the grandchild and also for your own child (the parent of the child with disabilities).  And to top it off there is nothing you can do to help your grandchild.  You do not get to make any of the medical decisions, that is the parent's job.  So therefore, the situation seems out of your control.

That being said, there are many things that a grandparent can do to help.  I will give a few EXTRAORDINARY examples that my parents and in-laws have done to help.  I do not share these examples to make you think "wow, she has it easy...look at all the help she gets!".  But rather, I hope that somewhere a Grandparent will read this and that it might spark an idea of a way you can help.
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-When Ellie was about 2 and had a trach and ventilator, etc etc etc it was emotionally a really really hard time in my life.  I was unhappy, felt unloved, unsupported and the only solution I could come up with was to get a divorce.  This really wouldn't have solved anything, but I couldn't figure any other way to change my situation.

I talked with a social worker about it and he suggested that I needed to do a weekly datenight.  After giving a lot of excuses of why this wouldn't work and we couldn't do it, including money and medical issues of Ellie, he said "a datenight is cheaper than a divorce and a lot more fun".

We asked my parents to babysit so we could go on a single datenight, they agreed.  Somehow it snowballed into them watching ALL of my kids EVERY SINGLE SATURDAY night for over 12 years now.

Can you believe that?  What grandparents do that?  They literally saved my marriage.

Grandparents, I understand that this is WAAAAAYYY over the top.  Not everyone could do that.  But maybe as a Grandparent you could offer once every other month or once a month or something like that.

Now you're thinking...but there are too many medical or behavioral issues!  Try this and see what happens...ask your child..."I would like you to train me to take care of _____(fill in the name of your grandchild) so that you and _____(spouses name) can go on a datenight _______(fill in frequency)".  See what they say...I bet it will be "Yes".
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-My In-laws, who are retired, are always willing to watch my other children when Ellie has an extended inpatient hospital stay.  This sometimes happens for weeks or even months on end.  This is an enormous help to me because it takes every ounce of energy to worry about Ellie's medical needs and I just can't focus on outside day-to-day things.

It is also always a stress reliever when you don't have to take other kids to regular specialist appointments also.

Grandparents-Have you offered to watch the other grandchildren while your grandchild is inpatient or for regular Dr. appointments?

I know with me, I feel comfortable asking someone once or twice to watch my kids and after that I feel like I am indebted to them.  So if you truly want to help...you need to be slightly forceful.  When they come home from a Dr. appointment, ask when the next appointment is and offer to watch the kids again then.  Call at the beginning of the month and ask what appointments they have that month and see if you can help with any of them.
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-At one point when gas prices were high I was worried about the amount of money we were spending on gas to get to and from her Dr. appointments with her specialists at our local Children's Hospital.  I told my parents I was going to try riding public transportation to her appointments to save some money.

They said they would start paying for all of our gas to get to and from our Dr.'s appointments.  They added me onto one of their credit cards and told me to use it.  Keep in mind that my parents are not rich, however they are financially stable.  They felt like this was something they could do to help.  After a while this also expanded into them offering that I can use the credit card to pay for food while at the hospital, which was also becoming another large expense.

Grandparents, is there a way you could help your child financially?  Maybe it's not an ongoing thing, or maybe it is.  But how about giving your child a prepaid gas card for Dr. visits?  Or how about some money for food at the hospital?

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When Ellie was younger, I was basically home-bound with her. I felt like I was in prison.  I didn't even feel like I could go get a gallon of milk.  So when my parents or in-laws would call and say they were coming for a visit, I would ask them, "Can you swing by the store and buy me a gallon of milk, a loaf of bread, some peanut butter and a package of size 2 diapers".  It was not a problem for them and was a HUGE help for me.

Grandparents, can you call your child and say "I'm going to the store, can I pick you up a few things while I am out?"
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Both my parents and in-laws are really good about randomly offering to take my other children to McDonalds or to the store or to their house for a few hours, so I can sleep, or shower or relax.

Grandparents, can you offer to take the other children for a while to give your child a small break.  It will do wonders for them and you get to spend time with your Grandkids as well.
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Grandparents, by jumping in and giving service to your child and grandchild, you will reap immeasurable blessings for yourself and for your child and grandchild.  You can make a difference.

Grandparents, what ways have you helped?  What ideas has this post sparked in you?  Comment below.

Parents, What ways have others helped you?  Comment below.

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Flex spending

If you have a flex spending account to pay for medical expenses, you can use it to purchase OTC (Over the Counter) medications also.

If you have a credit/debit card tied to your flex account, often the OTC prescriptions will not be approved.  But if you save your receipts and have a Dr.'s prescription, you can submit it and be reimbursed.  The money will come out of your flex account and be paid back to your pocket.

Just make a list of the medications you normally use and have the Dr. to write you an RX.  Some examples include Ibuprofen, Acetaminophen, Pepto Bismal, Tums, Claritin, Zyrtec, Zantac, Prevacid, Saline nose spray,  contact lens solution, bandaids, etc...

Also, anytime the Dr. says to use something over the counter, have them write you a prescription for it, so you don't have to track down the Dr. later on.

Here is a post from irs.gov explaining this same concept.  https://www.irs.gov/uac/Affordable-Care-Act:-Questions-and-Answers-on-Over-the-Counter-Medicines-and-Drugs

Have you used this technique?  Do you have a flex account?  What things have you run through your flex account?  Please comment below.

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What can you count as medical expenses on your taxes?

There are some things that you can count on your taxes as medical expenses that you may not know about...

• home modifications for accessibility,
• childcare for your child with disabilities, 
• acupuncture, 
• chiropractor, 
• a medical conference (admission and transportation), 
• guide dog or service animal, 
• lodging if you used it while receiving medical care, 
• meals while inpatient, 
• osteopath, 
• tutor to help with mental or physical impairments, 
• telephone equipment for deaf/hard of hearing/or speech disability, 
• transportation for medical care

For a full list go to https://www.irs.gov/pub/irs-pdf/p502.pdf  it starts on page 5.

In order for the medical expenses to count, it must add to a certain percentage of your "Adjusted Gross Income" which changes each year.  For example here were the rules for 2015...

You can deduct on Schedule A (Form 1040) only the part of your medical and dental expenses that is more than 10% of your adjusted gross income (AGI). But if either you or your spouse was born before January 2, 1951, you can deduct the amount of your medical and dental expenses that is more than 7.5% of your AGI. If your medical and dental expenses aren't more than 10% of your AGI (7.5% if either you or your spouse was born before January 2, 1951), you can't claim a deduction.

A feeding chart

My daughter is on continuous feeds for 23-24 hours per day.  Her formula only lasts at room temperature for 3 hours.  So during the day we only put 3 hours worth of formula in the bag at a time.  At night we fill up the bag for the whole night and put an 2 ice packs surrounding the bag.

Although we try to put her to bed at a consistent time, it doesn't always happen.  Rather than calculate out how much formula we need to use to make it through the night, I created a chart.  I have included it below as an example.

I printed it off and laminated it (I just used clear tape) and I keep it in her feeding pump backpack.

How do you manage your child's continuous feeds?  Any tips for making things easier?  Please leave comments below, subscribe to this blog, and "like" our FB page to get more tips on raising a child with severe disabilities  https://www.facebook.com/SupportedInOurTrials/