The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.
Money Follows the Person (MFP) is a Medicaid program that has helped over 75,000 people with disabilities and seniors move out of nursing homes or institutions and back into their communities. MFP restores the dignity and liberty of people with disabilities by promoting and supporting choice and community living.
Funding for the MFP program expired in 2016, and states have already scaled back their plans by approximately 40%. We need your help and advocacy to get the Senate and House of Representatives to pass the bipartisan EMPOWER Care Act (S.2227 and H.R.5306), which would extend and improve the MFP program. Last year was the first time that the number of people that transitioned to the community had declined.
By passing the EMPOWER Care Act and funding the Money Follows the Person program, Congress can help more people with disabilities transition out of institutions and nursing homes and back into the community. Without action NOW, more people will be trapped in institutions.
Help people living in nursing facilities and other institutional settings move back into their communities!
Take Action
Use the advocacy tool below to send an email, tweet, and Facebook post directly to your Senators and Representative to tell them to support the EMPOWER Care Act and fund the MFP program.
It has taken me some time to develop a workstation that not only allows me to work from the comfort of home, while playing my favorite video games; but, also enjoy a bit of independence. The Quadriplegic PC Computer Setup Gaming Workstation Project ( and the new build) will hopefully motivate others to seek aid when needed to accomplish their computer setup goals. I also posted links to the equipment that I am putting together and currently using, down below.
The Quest Begins
In Aprilish, 2017, I began communicating with organizations in hopes to upgrade my Quadriplegic PC Computer Setup Gaming Workstation. That PC wasn’t able to provide the performance needed for the type of activities necessary: voice recognition, gaming, streaming, working, video-rendering, photo editing, etc..
First, I reached out to the Department of Veterans Affairs assistive technology department to find out if they could satiate my needs. Upon following up, was told it had been submitted to contracting, “and awaiting approval.” So I then patiently waited for 4 to 8 weeks to confirm such approval. Never received it.
Next, I sought to hopefully be sponsored and obtain a computer from another source. Gaming PC companies here in the United States. I also reached out to the Wounded Warrior Project out of Pittsburgh who told me of a charity called Stack Up.
Quadriplegic PC Computer Setup Gaming Workstation
L: Shadow R: Cuddles
During this period, I continued to stream and do my thing with my laptop (provided by the VA) and volunteered my time to help the Stack Up organization as a game lead, along with becoming part of the Redshirt Raiders Discord. Circa October, I received a phone call from Houstongirlgotu, Orlando Stack Lead, notifying me She had a Stackup T-shirt to drop off. After several hours of small talk about everything under the sun, another knock came at the door. Two other Stack Up members Cuddles & Shadow came to my door surprisingly holding a computer. I learned later, it was a custom built PC just for me!
Rigs 4 Vets is a program that I had not known about but would come to appreciate. Stack up gave me a great gaming computer that night. I have since made that PC into a stream computer after little less than two weeks later out of the blue a computer from the VA showed up (my current game PC). I believe I mentioned to Houstongirlgotu before the surprise about how many places I had gone to obtain a new computer and that they would probably, “come all at once.” Which, they kind of did.
Quadriplegic PC Computer Setup Gaming Workstation
Current Gaming PC (Dept of VA)
Motherboard ASUS X299 TUF MKII ATX
CPU i7-7740X Processor Overclocked (Overclocking (4.9 -5.2GHz)
DDR4 2666MHz Memory- 32GB (32GB (2x16GB))
MSI AERO 8GB OC GTX 1080
SSD 256GB M.2 Solid State
Optane None
CPU Cooling CORSAIR Hydro Series H100i V2 Water Cooler
Windows 10 Professional 64-Bit
The Florida Stack…
has gotten together numerous times since the upgrade. I stream regularly on my own channel, daily, twitch.tv/Quadcapable. Also through the stackupdotorg channel, Fridays 4 pm EST, in support of their mission and to contribute what I am able. I’m currently infatuated with upgrading and bettering my system. Starting to piece together a newer rig, as a Marine, always seeking the best.
Luckily, I was able to find a new home for some of the components from Stack Up. Re-donating the remains to another veteran, x7sage7x. Had the chance to also use those same components with my daughter. Transferring them to a new case and detailing the work on PC Part Picker.
Just remember if you want something; never stop fighting for it. You can always find good people to help you get it done. If you have questions about any of this, please let me know so I can help you too.
A little background about myself. I am a C-3 complete quadriplegic who travels with his fiancée, friends, and family. Due to needing someone to take care of my particulars. This is my second cruise vacation and my first after becoming a quadriplegic. I am an avid traveler and have become an advocate for persons with disabilities. This was a five day country cruise on the Royal Caribbean Brilliance of the Seas with stops in Key West and Cozumel. Here’s a list of a few things I believe are necessary as you embark on any type of vacation as a person with disability. Using my cruise as an example.
Disabled Travel: Five Things You Should Know
PROPER PREPARATION LEADS TO A GOOD TIME. I am lucky enough to have a tremendously smart and loyal fiancée. Who has gotten our preparation for travel down to a science. For the cruise we had to ensure that we were able to charge my power chair, bring along a manual chair in case of power chair failure, and a floor lift. We also tried out our new portable shower chair (not that great). Along with the equipment that allows me to scoot around we also brought a floor lift to get me in and out of bed. We also packed several suitcases full of other accouterments associated with my disability.
Make a list
Double Check Your List
pack everything and double checked again
FIND APPROPRIATE ACCOMMODATIONS: The cruise lines are very accommodating when it comes to people’s disabilities specifically, wheelchair users. Our room was over-sized by about 150 ft.² with a very large role in shower and a space for a king-size bed and a couch. We double checked with our travel agency as well as the cruise line to ensure there was ample space under the bed for our lift to operate correctly as well as double checking that the shower area was accessible as well. *Even though the website says it is always call and double check.
RECONNOITER YOUR DESTINATIONS:
Disabled Travel: Five Things You Should Know
In the Marine Corps whenever we went to another country or training in certain environments we were given a detailed briefing and handouts courtesy of the CIA that described that specific area its demographics. Where to go and where not to go. Whenever traveling abroad make sure you have some understanding of the culture as well as any types of threats that may be applicable i.e. kidnapping. Also with Google maps most of the tourist destinations you can Street view. For people like me that like to run amok it may not be as simple.
Always bring a buddy.
REMAIN PATIENT: Not only with the local populace but with your caregivers and the people with you who may not have a complete appreciation for your lack of mobility. I try to keep a big smile on my face and keep everyone moving because typically I’m the point man. Understand that the people around you specifically, the strangers don’t understand you or your disability but for the most part will do everything they can to accommodate you. Don’t be afraid to ask.
REMEMBER, YOU ARE ON VACATION: the main thing is to try to have as much fun as possible and not let your disability drag down. Don’t be let down by the things you cannot do (I didn’t get to see the Mayan ruins). But get excited about the things you can do (midnight party on the cruise ship). Believe it or not the person with a disability is usually the center of attention and whether positive or negative your vibe carries on to the people around you.
They are all looking at you and how you are reacting to the situation. The more positive you can be the better time that will be had by everyone. Learn how to laugh off detours on the ship. Hallways are very small. But the good news is there isn’t much other issues with the boat besides small hallways. the accessible rooms are close to the end of the hallway and near the elevators.
So this alleviates the need to go down the hallway. As always if you have any specific questions feel free to contact me and I hope you find your next vacation and can use some of my insights to make it an enjoyable experience.
I’m so grateful to Chive Charities for all their help in obtaining some of the equipment I can use on a daily basis to assist my fiancé and caregiver in their day-to-day activities getting me in and out of bed and a great night sleep next to the woman that I love. It’s awesome to know that there are people and organizations available to assist people with spinal cord injuries and a myriad of other diseases and disorders. The fact they also single out veterans and their programs is just another example of how great The Chive community is. I’m appreciative of being a part of it and hope to be so for many years to come.
-Chive on
Here is the link to my story: My Story Link
Two short years ago I was Considered by the VA as being catastrophically injured(C3 complete quadriplegic) during a seemingly harmless dive off of my boat into 5 feet of water. Little did I know that dive would change my life forever and catapult me into a whole new way of thinking.
These types of accidents and injuries tend to careen people into certain directions. The 1st direction is one of depression and of always asking “why me? “The 2nd direction is just trying to live your life one day at a time and be as happy as possible. The 3rd, and my chosen, direction is that of placing a person in a position to become passionate for a cause and to escalate their understanding for advocacy and helping others with a similar injury.
Since the accident I’ve been motivated to keep my family living a comfortable life and to also inject myself into as many positive roles to assist others that may need my knowledge and experience. In particular I become involved with the Paralyzed Veterans of America here in central Florida as a board member. I’ve attended several functions to promote awareness for spinal cord injury diseases and disorders nationwide and locally. I created a blog to share my story and hopes to help others quadcapable.com and I assist whomever I can whenever they ask. Sometimes I even help when they don’t ask.
To continue pursuing my goals I feel further education is necessary and I want to show others in my condition or with challenges that no matter what “if there’s a will there’s a way.” I hope to inspire people with a never quit attitude and an understanding that no matter what there is a community out there that will help you all you need to do is ask.
So I am asking my community to assist me with pursuing a Masters in Business Administration at Stetson University here in Deland Florida. Unfortunately I have applied for a myriad of grants and scholarships and I’ve come in so far but fortunately there is a community behind me that I hope will back me up and see my track record in the goals I have already accomplished will support me in this effort. I have already been accepted and currently enrolled to start school on Tuesday, August 30 with a deadline to pay this semester’s tuition by October 15, 2016.
Today is the kind of day you don’t forget. Similar to a birthday, wedding anniversary, high school graduation, and the birth of a child you not forget the traumatic events that direct your life in a direction without your consent and forever change how you live. Make sure every day you meet your potential, hug your loved ones, and don’t put off anything that means anything. Life can change literally in the blink of an eye. #Charliestrong
Make Your Insurance Pay for a Standing Power Wheelchair
Please Feel Free to Use the below Email As a Template
For most wheelchair-bound individuals walking or standing can be not only of great physical therapy but also mental therapy as well. However, there are barriers for the average person in a power wheelchair and manual wheelchairs restricting their ability to obtain a wheelchair that will assist them in standing. Make Your Insurance Pay for a Standing Power Wheelchair.
I received my first power wheelchair while an inpatient rehab at the James Haley VA spinal cord injury center which was a Permobil C400. As a letter below will describe several issues arise from sitting all day and not being able to stand. Given my level of activity even as a C3 complete quadriplegic my medical condition necessitates standing to relieve some of the symptoms and chronic issues I was having.
How to Make Your Insurance Pay for a Standing Power Wheelchair
I’ve tried to list the steps below based on my experience. However, because I use the VA your experience may differ through Medicaid-Medicare-Private Insurance but what remains the same is identifying issues you have from not being able to stand and then obtaining documentation from your doctor advising it is medically necessary for you to stand more often and independently throughout the day.
What made a great difference for us was the difficulty of using a standing frame. Typically, the first thing insurance will recommend is a standing frame. But, to reap the benefits of standing you must be able to do it often. My issue with the standing frame is that it took two individuals and about an hour to get me into it with the Hoyer lift.
How to Make Your Insurance Pay for a Standing Power Wheelchair
Step One.
Realize You Need a Standing Wheelchair.
Do you have bowel and bladder issues? Circulatory issues? Social issues?
Step Two.
Identify Chronic Issues You Have That Standing Would Decrease.
Frequent UTI?
Inconsistent Bowel Program?
Blood Clots?
Step Three.
Put This Information in Writing and Submit to Your Primary Care Doctor.
Here is a great resource for finding solutions to some of your chronic medical issues through the use of the power standing wheelchair.
Contact the doctor once you’ve sent the information to ensure they receive it and then follow up on a weekly interval to find out where they are at in the process. You may be able to contact your durable medical equipment (DME) provider or your insurance provider as they may give you specific instructions regarding your particular chair.
Step Five.
Be patient
Rome wasn’t built in a day. It takes time and some persistence to obtain expensive medical equipment especially when dealing with government agencies and especially civilian doctors and insurance. Feel free to comment in the section below and I’ll do my best to assist you in any way possible.
My letter to the doctor:
Dr. name omitted,
(Name omitted) I am writing to you in regards to a request for a standing wheelchair to replace my current power chair due to medical necessity. It’s come to my attention that I would need to provide proof of medical necessity to the KT department in order to obtain a standing wheelchair. Specifically the F5-VS from Permobil which is the model the VA typically issues. I have put a link below to the Rehabilitation Engineering & Assistive Technology Society of North America (RESNA) position on wheelchair standing devices as well for your review. Although it’s obvious you understand the benefits of standing because of seeing your desk 🙂
In regards to my specific case the following applies over the past year:
history of UTI (two of which led to a hospitalization)
standing allows for proper and more complete voiding of the bladder
“Urinary Tract Infections Urinary Tract Infections (UTI) is the third most frequent complication for clients with SCI , and a frequent secondary complication for many other wheelchair users. Prolonged immobility causes hypercalcemia, increased urinary calcium output , and also reduces bladder emptying . By reducing contributing risks, standing wheelchairs have been shown to reduce the occurrence of UTI for wheelchair users , which could lead to kidney infections”
history of bowel obstruction (one incident lead to hospitalization)
“Bowel function. Some users have experienced improved bower regularity, reduced constipation, and lesser occurrence of accidental and unregulated bowel movement as a consequence of using wheelchair standers . Elimination of chronic constipation and significant reduction in bowel care time has also been shown as a result of frequent standing . Chronic constipation can lead to bowel obstruction, a dangerous condition often requiring surgery. Unregulated bowel movements can lead to fecal incontinence at a time when the client cannot be cleaned by a caregiver, increasing the risk of developing pressure sores.”
circulatory issues chronic swelling in feet and legs (history of clots)
“Users have also experienced improvement in lower extremity circulation as a consequence of utilizing a wheelchair stander . Some benefits are reduced swelling in the legs and feet.”
history of blood clots resulting from poor circulation
history of pressure sore
“Pressure sores When fully standing, pressure is 100% relieved off the Ishial Tuberosities (ITs). However, when tilting or reclining, there is only partial redistribution of pressure underneath the ITs. Pressure ulcers are the primary complication for people with SCI , and many other adults who sit in wheelchairs all day long. There is evidence that users have suffered fewer pressure sores while using standers , or integrated wheelchair standers .”
Having the ability to independently stand intermittently throughout the day would vastly improve/reduce the issues above as stated by RESNA in the accompanying link. It is RESNA’s position that wheelchair standing devices are medically beneficial for wheelchair users by: enabling them to reach; improving ADL abilities; enhancing independence and productivity; maintaining vital organ capacity, bone mineral density, circulation and range of motion; reducing tone and spasticity, the occurrence of pressure sores and skeletal deformities; and enhancing psycho-social well-being.
I have proven the ability to tolerate standing as I have used the standing frame however due to the nature of that equipment and my active lifestyle I’m not able to use it in a capacity that would be as helpful as a standing wheelchair. Also it requires at least two caregivers or helpers to assist me while the wheelchair allows me to be independent.
The above represents a small portion of all the benefits from regularly being able to place myself in a standing position. Thank you for your consideration and your time I look forward to speaking with you regarding this issue.
Transcript
Charlie Merritt’s reality shattered in an instant on a sunny august day in 2014
0:06when he broke his neck diving into shallow water I remember floating in the
0:11water
0:11face down and basically feeling like I was going to drown paralyzed from the
0:17neck down the former Marine has been able to get around only with the help of
0:21his wife and inexpensive motorized wheelchair but enterprising mechanical
0:27engineering students at the University of Central Florida had a better idea
0:31since we’re all students at first it’s a little scary cuz we see this device that
0:35we made being used by somebody then we see it works perfectly pretty much lost
0:39the it’s an amazing feeling they created a 3d device that controls wheelchairs
0:44with simple facial movements sensors attached to muscles send electrical
0:49commands to direct charlie’s chair I’m not burdening the people around me to have to use their assistance
1:09unlike other disability devices the college senior design project which is
1:13not yet being mass-produce is very affordable this device will cost less
1:17than $400 compared to several thousand for similar designs I’m already saw
1:23reporting
Being a quadriplegic living with paralysis kind of sucks
I know what you’re thinking, “well of course it sucks.” And I would tend to agree with that statement because as a whole it does kind of suck. But oh there is a silver lining in that black cloud of quadriplegia. “What?” you say? “There is no way. It looks like a horrible time.” Yes, for the most part the inability to move my appendages leaves me insurmountably frustrated. I have learned in my short time as a handicap to bury that constantly nagging feeling of helplessness. Mainly, underneath a fistful of antidepressants. But I digress. Being a quadriplegic living with paralysis kind of sucks.
There have been many good moments over the last 15 (now over two years) months: I’ve learned a lot about myself, and the people in my life. I have met a lot of great people, joined a couple of great organizations, continued to run my business, started a blog, and continued to meet life’s challenges head-on!
Being a quadriplegic living with paralysis kind of sucks
This post should provide some insight on what I do every day and in hopes to shed some light on the day-to-day awesome sauce that is my current “new normal.” That’s what the therapist call it when you have a catastrophic injury and have to figure out ways to make your life be somewhat normal.
I define normal as having a sense of purpose. The good thing about purpose it doesn’t take physical attributes to have. You just have to be willing to take action. Breaking my neck and said little change on my purpose. There have been some minor modifications to make sure I can still take action. My day is typically normal and just like everyone else’s.
So I get up and go to work.
This is typically a Monday through Friday thing and I get up. I mean Tina and an aide from the local home healthcare agency get me out of bed, put me in the shower, shave, brush my teeth, and then head back to the bed to dry off and put my clothes on for the day. I am then craned into my power wheelchair with an apparatus similar to what a mechanic uses to lift an engine out of the car. Then I’m off!
Into my home office to begin my day around 10 AM. During the day I am either on the phone, sending or receiving emails, fixing bugs in our marketing, interacting with clients, and all the other day-to-day activities of a business owner. This goes on usually till about 6 PM depending on how much work I have left to do. So for Monday through Friday this is where you’ll find me unless…
Go outside your house.
Lately I have been up to something very exciting. Working with UCF on new wheelchair technology and becoming Central Florida famous. Limbitless Solutions is a nonprofit that helps amputees and now high-level quadriplegic injuries and affects a better life for them and I’m proud to be a part of that. You may have noticed me on the news almost 1 million hits.
Sometimes we have to drive three hours to the Tampa VA to see my doctor. I have work to do for the Paralyzed Veterans of America Central Florida Chapter as the Treasurer that keeps my off time occupied. I am currently planning a poker night fundraiser, a group skydiving event, trying to find ways for the chapter to effectively assist our members, and the list goes on. It may seem like a lot, and it may be, but the one thing all of these have in common is I would not have done any of them without being injured. Some activities have changed but my mission has stayed the same.
I am damn sure not letting the inability to use my arms and legs stop me
My mission now as it is always been at least for the past decade is to do my best to take care of my family, earn some sort of living, and try to explore all life has to offer. My injury has not changed this it has just changed how I get there. I’ve also been given opportunities I wouldn’t have thought I would enjoy or be as passionate about as I am now.
Being a quadriplegic living with paralysis kind of sucks
I am damn sure not letting the inability to use my arms and legs stop me. So yeah being a quadriplegic kind of sucks but as with anything else you can either overcome adversity or go hide in the closet underneath your blanket and never come out and experience everything this world has to offer. Good luck with that I’ll be skydiving.
Many thanks to love my life Tina goes without her none of this would be possible. You are my lighthouse in the storm.
Always bring a buddy.
Disabled Travel: Five Things You Should Know
