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.
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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.
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Very excited. Was just fitted for my F5 VS standing wheelchair from perMobil. There are a myriad of health benefits when being able to intermittently stand during the day independently. For me I am hoping to help with constant UTIs, bowel obstructions, circulatory issues, and more.
A long time ago in a galaxy far far away…accessibility experts toil away ensuring the Death Star meets all of the Imperial requirements for disability access. We all know the story as told by Lucasfilm’s and now Disney from the perspective of the all capable Jedi Knights however from my viewpoint I look at Star Wars a little differently and I found myself wondering how I would make my way around the galaxy in my wheelchair. So I set out to have a few questions answered: “are the stalls on the death Star accessible?” “How do the handicap Ewoks make it through their forest village high up in the trees?” “Are there tiedown straps in the Millennium falcon?”
Using my intergalactic search tool i.e. my laptop and Google to see if I could find any evidence that the Empire or the resistance kept any standards for handicap accessibility was pleased to find they did. However in some instances fell very very short.
Apparently the “evil” Empire does issue wheelchairs to their veterans. As evidenced in this picture.
Once a Jedi has trained an apprentice they move on to some deserted planet old folks home.
and even the fastest bucket in the galaxy got an accessible ramp thrown in.
But leave it to the little furry guys on Endor to get it all wrong.
No elevators here!
According to the NATIONAL INSTITUTE FOR SPINAL CORD STATISTICS there are currently 270,000 recorded spinal cord injuries in the US alone. Increasing at a rate of 12,000 annually our particular percentage of the population is minuscule (1). Which leads to the first pitfall for US stem cell research for SCI (spinal cord injury):
Because of the small percentage of SCI in the US and globally funding for traumatic spinal cord injury treatments and trials are limited. For example two of the major contributors here in the US are private organizations. Both Christopher and Dana Reeve’s foundation as well as the Miami Project To Cure Paralysis are privately funded organizations with their founders being a quadriplegic themselves (2) (3). How do we expect to find a cure without proper funding from government? It’s my opinion that the biggest contribution from our government is the restrictions placed on research by the FDA. Thus further slowing the process of not only treatments for spinal cord injury but dozens of other illnesses from ALS to blindness.
Recently I made a trip to the Miami Project and spoke with one of the individuals directly involved with Schwann cell clinical trials. Currently after two decades of animal trials the FDA finally approved human clinical trials for thoracic and soon cervical patience. However some requirements have led to very few SCI patients being accepted into the trials. For instance out of 500 only 2 were accepted want to cover requirements is the scar on the spine or the lesion can be no bigger than 2 cm (4). Also the FDA only allows for C-5 and reason below to be a part of any study regarding stem cells and spinal cord research here in the US. So the second problem is:
2. The requirements to be a part of any clinical trial first themselves the US rule out 99% of SCI patients. And in looking at the amount of time it took to transition from animal to human trials a further transition into widespread human trials appears to be very far in the future.
Unfortunately for us as well the FDA has rejected embryonic stem cell’s due to possible tumor growth (5) but has approved the Schwann cells even though reportedly by themselves do not repair the spinal cord. “Thus, the endogenous regenerative events that occur after injury fail to repair the spinal cord.” (5) which leads to the 3rd problem:
3. We’re using the wrong stem cell’s due to the fear of a possible tumor created from the embryonic stem cells which are the most pliable the FDA has ruled them out.
So what are we to do? Well in other parts of the world certain restrictions do not exist, certain regulations do not carry over, they are doing the research now on the front lines. So we do what all sick people do when we are looking for a cure we become “stem cell tourists.” Meaning we go to the countries that are doing the trials. Currently there are several places including Panama, Thailand, China, India, to name a few. They have paid for ads on Google directing you to their websites where patients have beaming testimonials concerning their treatment and hope for success.
Why isn’t the US on the forefront of this? Why is our country lagging behind on treatments that could heal and save people like me and millions of others with the potential that stem cells create? Is it that big pharmaceutical companies don’t want cures for diseases that leave people taking meds for decades, insurance companies wanting you to be sick wanting to you to pay your premiums wanting to increase your deductibles? I encourage you to look for private companies doing stem cell research in the US most either go out of business because of lack of funding or sell to companies outside the US. Look up Osiris a company in Maryland which recently sold out because of lack of funding. Has money become so important that health takes a backseat in the US?
I want everyone reading this not to look at it as a conspiracy theory but to think realistically about the state of the US and why we are so far behind other countries. Something needs to change, people need to come together, raise awareness, speak out, not just on Facebook, but in the streets rally behind the causes you believe in, be a part of something.
Daughter of Quadriplegic’s Letter to Ellen DeGeneres
My oldest daughter took it upon herself to write Ellen DeGeneres and I have taken the liberty to place it here. Something about the way she writes always moves me. To help out go here. Daughter of Quadriplegic’s Letter to Ellen DeGeneres:
Hello there Ellen!
I am a typical teenage girl; I get in trouble with my parents for going to small parties, I stay up late on Twitter and I love my family. However, one thing that isn’t so typical about my life is that my step-father, Charlie, became a quadriplegic last year. Quadriplegic means that your arms and legs are paralyzed. My step-dad has been a role model for me and my family since he came into our lives in 2005. He served in the United States Marine Corps, he was a powerlifting champion in 2014 and he is the best Father he can be 110% of the time.
Nobody knew that simply diving off of our boat in the Gulf of Mexico would cause such a huge impact on our lives. The water was too shallow. After dying 6 times, being on a ventilator to breathe, me and my little sister missing weeks of school, my mom coming to her wit’s end and 8 grueling months in the hospital he made it home.
Bedside with Charlie
Making Our Lives More Accessible
Our house was outfitted with ramps, fancy voice-controlled lights, medicines nobody could pronounce, different kinds of wheelchairs and most importantly, a fully intact family. The doctors told us that he would most likely never be able to move any of his extremities ever again, that fact has still held true to this day. Charlie is 36 years of age. He is so determined (he always has been) to get better and be himself again. Nearing the year anniversary of the accident, he is getting quite bored of being a quad. Even with all of his voice controlled computers, tablets and televisions that the Veterans Affairs has so so so generously provided us with, it can never compare to being able to do everything on your own.
Not great
Learning to be a Caregiver and Daughter
Me, my little sister Katelynn, and my mother Tina feed him, put him to bed every night, get him up every morning, get him sips of water, push his stomach when he needs to cough, scratch his head because it feels so good to him and we love him with all of our hearts. Luckily my mom is a nurse so it has made this whole ordeal much easier; she does so much for him and is often stressed (but who isn’ t stressed these days?). This story isn’ t just about my step-dads bravery and fight to live, or my moms dedication and perseverance, my little sister (15 yrs) wanting to sell her kidney to be able to pay for him to get stem cell research or me just trying to make this easier for everyone; its about being here for each other. Not just family but everyone who cares about something.
After the accident…
we made a GoFundMe account, 98 people donated about $7900 dollars. Everyone came together to help just one man that needed it. It was beautiful and inspirational. But being a quad is not cheap and as I said before, Charlie is tired of it. He has been looking into Stem cell research in India and various other countries. The price of this can range from 50,000 to 80,000 not including housing and food in a foreign country.
It’s been a long year Ellen. One step forward and 5 steps back!
Most of the Family
A quadriplegic woman that had seemingly worse injuries than Charlie was fortunate enough to try out methods done by Doctor Schroff in India and within 3 months she was working on walking again! Aside from those issues, we have been renting a beautiful house in Deland Florida for 2 years now and we found out that the owner of the home hasn’ t been paying the mortgage since 2010. So the bank took it, a company bought it and we got an eviction notice today. We either have to buy it or move. It’s been a long year Ellen. One step forward and 5 steps back!
Charlie is so Funny and Positive
He could make you laugh within the first 30 seconds you talk to him. Don’ t know exactly what you can do to help but everyone seems to have faith in you at times like this. Even simply sharing his GoFundMe on your show or website could make a huge difference, although I feel like Charlie could give a lot of hope and happiness to your viewers.
We are supposed to make a funny MTV Cribz video showing off all of his rides (wheelchairs) and post it on Facebook to make people laugh. You would really like him, Ellen. I used to have dreams to be a veterinarian or be famous or to be beautiful. I have one dream now, it is to have my dad be able to walk me down the aisle. I hope we are worth your time Ellen and thank you for giving us hope.
There are many hurdles living life as a quadriplegic for the most part a lot of them are similar to your average everyday ambulatory person. Obviously relationships, money, and day-to-day tasks etc. for the void that is our 24 hours a day life. There are certain things I found to be helpful when it comes to living life as a quadriplegic and in general. These aren’t specific to my injury but my situation is a great example of how to stay positive and always look forward.
1. Stop looking at the world as what you cannot do and start focusing on what you can do.
If there’s one thing I’ve learned through this injury despite my therapist’s persistence that I can do everything I did before is that I cannot. Understanding that simple fact has lead me to a greater acceptance of my limitations but also an increased motivation to improve on what I can do. I’m not saying to not strive for the unknown or for the impossible don’t stop shooting for the stars because you can wind up on the moon what I am saying is to not dwell on the negatives but focus improving positives.
2. Stop being so proud and allow people to help you.
So many people walk through life, no pun intended, feeling as if they are alone for no better reason than being too proud or afraid to ask for the help that they need. There are so many things we can do as human beings if we group together there is power in many but steps need to be taken by the individual to build upon the community. If I was told a year ago that I would be asking for help or donations for myself I would’ve laughed in your face but I realize now that it is not about that, it is about being a part of something bigger than yourself. That in itself is very powerful.
3. Don’t take your frustrations out on those people.
Probably the most important thing because of the situation you find yourself in as a quadriplegic you may feel like lashing out. I’m sure a lot of us feel this way without adding to it the frustration of not being able to use your arms and legs. When I feel frustrated I attempt to put myself into a meditative state of retrospection in hopes to find resolution to the current problem. For me that usually means asking others for help whether it be the people in my immediate circle, groups am involved with, or my network of friends and family. But what I do not do is blame others for my issues for my problems for my handicaps I do not treat them like any of this is their fault and I make sure I own my decisions whether good or bad.
Funny thing is while writing this I was served an eviction because my landlord didn’t pay her mortgage so bad things come and is not about the hurdles put in your way or the walls that life throw up it’s your ability to run and jump to move around to find answers and keep moving forward that defines you. So stop dwelling on what you cannot do and start working on and proving the things that you can.
There is nothing better than cruising on your new boat in the Gulf of Mexico enjoying the sun the surf and your beautiful wife (fiancé). That’s exactly how my day was going on August 23, 2014, and how I became a Quadriplegic. Started off early that morning at my house in Central Florida where we packed up our boat sunscreen everything else we needed and headed to Anclote River Park to put our boat in the water. After a three-hour drive and a stop at Publix to pick up the usual boating drinks, we finally got the boat backed into the ramp.
THE RAMP
The ramp was something we hadn’t experienced before. There was a strong current from the river and when I put the boat in we had our first issue of the day. Once we released the boat from the trailer our mooring line came loose and the boat drifted to the ramp next to us. I jumped in to tried to push the boat as I swam, which wasn’t the smartest move, and our neighboring boaters helped out as well. Finally, after 20 minutes of struggle, we got her secured to the dock. Put the cooler in then backed out. We then started moving through the channel to rendezvous with our friends in their boats.
THE MEETUP
Originally, the plans were to meet on the eastern side of Anclote Key. When we arrived at the designated spot there was no one to be seen. Calling one of our friends we found that they were on the western side of the island, the Gulf side. Meeting them in the channel and following him and his wife to the other side of the key.
We have arrived!
THE FUN
It only took us about an hour and three people to get anchored. But is well worth the effort if you see from the picture above just how beautiful it was that day. And yes that is my beautiful fiancée Tina floating in 5 to 6 feet of water enjoying the sun. Shortly after arriving and a couple dives off the boat later I made one final dive into the water that changed my and my family’s life forever.
THEN IT HAPPENED
I finally accepted my fate. I couldn’t swim. I couldn’t breathe. I just floated.
Upon diving into the water I blacked out and then woke up floating several feet from the bow of my boat at that moment I knew something was wrong. Gasping for air I yelled for Tina who thought I was joking. So I floated there until I finally accepted my fate. I couldn’t swim. I couldn’t breathe. I just floated. I was going to drown and die right then. Thankfully, at that moment our friends noticed me and swam over. They began to pull me to the shore. Where I could breathe again. But nothing below my neck was working. I was paralyzed.
At that point, I called for Tina again and she came to the beach with the rest of us and dialed 911. Shortly after, fish and wildlife, The Sheriff’s Department, Coast Guard, and then the Bay flight rescue helicopter picked me up and flew me to the hospital. After being put on and off two different boats the helicopter was chosen to be the best choice.
THE REST
A lot of the hospital stay was chronicled through my dad’s Facebook page and a fan page set up on Facebook as well. I plan on occupying a lot of this blog with a lot of those posts. Some were very moving.
