Beyond the Borders: Getting young people out of Nursing Homes

Vitaglide Ceremony at Beth Abraham. George Gallego is far right

When I was in rehab learning how to live as a quadriplegic, my future didn't seem too bright. All I saw was a world of needing help with everything and losing a sense of my personhood. I could barely sit up, brush my teeth or feed myself. Would people just see my disability and not take me seriously? Enter in my mentor George Gallego among others who gave me hope that I could still live life and not just survive my paralysis. George is a paraplegic so he has quite a bit more physical capability than I do, but seeing how naturally he rolled into a room and carried himself made me see that my life wasn't over! Plus, brother had style and that made me want to get out of hospital attire and start dressing like myself again. I remember watching George, Jim Cesario and quad comrades like Alex Elegudin's every move and asking them tons of questions. "How do you pick up stuff from the floor?" "Do you use aids to type?" I still use their techniques and advise today. 

George began sharing more with me and told me his idea of developing an organization to get young people like me out of nursing homes and back into the community. I was very disappointed with the way social services at the hospital was advertising Beth Abraham, because it was very deceptive and less than honest. Social services in Beth Abraham are even more disappointing as they only focus on admitting/discharging but not on improving your life while here! There is nothing productive for young people here. They have great potential in this facility but fall short for a number of reasons. It's best to keep people here where medicaid/medicare will continue to foot the bill. Forget about empowering anyone to thrive beyond this place. 

I supported George and his idea and even took a grant writing class to further support his endeavors. I helped get a vitaglide for Beth Abraham and felt very motivated to learn what I could about how non-profits operate. I got a better sense of how Beth Abraham works as a non-profit organization and looked forward to seeing George's new organization develop. 

Unfortunately, I began to suffer from many UTIs and was in a tremendous amount of pain. I lost a lot of weight and was in the hospital frequently. The best solution for me was to have a mitrofanoff procedure which was a process in itself! It was a long, difficult surgery that took months to recover from. Everything that that I was pursuing came to a halt and a some points, I wasn't even sure if I would live. 

Since then, I'm doing better physically, but still struggling with trach issues. I've been pretty home bound and focused on eternal things. I take one day at a time. It's even been difficult seeing myself out of here because I keep having surgeries. But advocating for my fellow nursing home residents has stayed on my mind. Not only for the young, but for the old. They've had careers, raised families and served our country. They deserve compassionate care that recognizes them as people, not just lumps of meat on the bed. But there's something about being young and in nursing homes. It's very depressing because you see your life as not really going anywhere even though you have many more decades to live. George is dedicated to changing this and I believe it will change more than he knows. When people recognize how many people with disabilities are in the community, it will spur policy change and better urban design. Already, concepts like "aging in place" are catching fire in the real estate realm as baby boomers age and need accessible homes. People are starting to realize that they need to prepare for things like a knee replacement, difficulty reaching, caring for elderly parents. 

George Gallego and his wife Julia

Not everyone has the means to purchase and modify a place and accessible apartments/homes are hard to come by, especially in the city! Some young people with disabilities are incredibly motivated to play sports, finish school, or hone in on a skill for a career. Living in a nursing home limits these opportunities and can make one feel trapped. Many with disabilities have their whole lives ahead of them and have something to contribute to the community.  George is competing in the NYC Ironman Triathlon in August. This is a hardcore event and he will be the only paraplegic competing! He is raising funds for his organization, Wheels of Progress, Inc. Won't you join me in this cause and give a contribution? You can donate here. 

In the meantime

In the meantime there is work to be done. Many young people are stagnating in nursing homes because they don't have accessible apartments/houses. They are prisoners of their bodies, their minds, institutions, medications. These institutions are set up for older people who cannot live in the community. Minimal is set up to entertain or rehabilitate this population but it costs out the nose to keep them there.

I know because I am one of them! The time that I have been at Beth Abraham, my floor has gotten heavier (with residents) and yet they've cut back on the staff. There are 4 aids to care for 40 resident in a shift and 1 nurse in the evening. The staff are now more unhappy, impatient, and the residents are left in their beds, in their chairs more often. It's hard for me to catch someone for help, but at least I'm more mobile! Granted, we are in a recession, but I'm beginning to learn that people tied to the healthcare industry, who are benefitting from it, can give more than they do.

"Hear this, O ye that swallow up the needy, even to make the poor of the land to fail,

Saying, When will the new moon be gone, that we may sell corn? and the sabbath, that we may set forth wheat, making the ephah small, and the shekel great, and falsifying the balances by deceit?

That we may buy the poor for silver, and the needy for a pair of shoes; [yea], and sell the refuse of the wheat?

The LORD hath sworn by the excellency of Jacob, Surely I will never forget any of their works." Amos 8:4-7

There are young people who just now have a support system through mentors at Mount Sinai and NYCSCIA, that help facilitate goals to go back to school, work or get them living independently. Many in fact, are motivated to get back into life! It costs the system much more to have these people in the nursing facilities than out on their own. This is why it so important to begin funding projects like Wheels of progress. It has huge potential for replicability because people with disabilities are often left out of the equation for housing. Most housing is INaccessible and the mayor's new housing plan completely leaves out the physically disabled.

Wheels of Progress is the solution to this problem. Start giving for 2010 today! I believe that ALL people should have a place to live where they can thrive in a supportive environment.

The Vitaglide has arrived!

The long awaited vitaglide has finally arrived to Beth Abraham! It's still waiting on the pallet to be evaluated and assembled, but hopefully by next week it will be in full swing. I hope it will be utilized as negotiated: that all residents whether on or off therapy can use the machine as long as they have medical clearance.

Quadriplegics are quickly cut off from therapy and do not get the cardiovascular or physical training they need to maintain pushing off the wheelchair. The Vitaglide does this while it enables all users, even those with limited hand function, to use the machine with minimal to no assistance!

Beth Abraham therapists have much to learn in the realm of transferring. This is why many quadriplegics fail to get any mat time to practice trunk and balance control, bed mobility. I hope to maybe bring in someone to do an inservice in this arena.

ADLs are also put on the back burner: cathing, bowel programs, dressing. But let's deal with one thing at a time!

There's other exciting things going on for the SCI support group this summer. We've been invited to this years health fair along with NYCSCIA--more info to come! We've also been having individual meetings with our coordinator, Dan Tratt, to discuss our goals and how to meet them. Since I did so well with the vitaglide proposal, I decided to take an online course in grant writing. So far it's going well and I look forward to writing proposals for Wheels of Progress and support the work they do.

Getcho szhit togetha!

So I may have to switch gears with my therapist because apparently there's a specific section of Asphalt that is for PT. I hope I can continue to work with Leslie but if my insurance will not cover her, I cannot continue to pay out of pocket.

I submitted a proposal to the chapter to help fund a Vitaglide Pro for Beth Abraham. My biggest worry is the obduracy of Beth Abraham! They just suck so much! Even when a good thing comes their way! They'll pretty shit up and but never give real access to anything. They'll boast of themselves in the music program. What music program!?? They have all this equipment but don't know what to do with it! They have a great space for therapy but they don't utilize it! The Tilt table isn't used! The thing that bugs me most is that they have a pipeline from Mt. Sinai to bring all these young cats with SCI and yet they don't have the appropriate program to maintain SCI ADL levels, independence. 

At Mt. Sinai, I showered in a chair and mostly cleaned myself. Now, I resign to shower on the bed, because their chairs here suck and my feet drag. 2 people have to wash me because there always has to be 2 witnesses against me in this place.

There are paras in power chairs, who do not do their own bowel routines! There is no motivation or education here to get them to the appropriate level. This is the place Mt. Sinai--a model SCI System--has chosen! The bottom line: because it's the best of the shit pile. Well, I think there are good points in Beth Abe and as long as I'm here, I'll do whatever I can to improve it. These are the things I think about when I envision Wheels of Progress and how transitions should run. This can be somewhat of a drawing board.

I've been utterly enjoying Darcy James Argue's Secret Society and their new album Infernal Machines. itunes describes it as "steam punk jazz" and that about hits it right on the head. "Take the A train" meets...I dunno, my fist! But on a serious note, most times I find jazz too chaotic for me to enjoy unless it's fused with something else. This is much more musically grounded and still solidly jazz. Here's a couple songs from the album, if you want more, I have all the songs in rapidshare...enjoy!



3. Transit
4. Redeye

The unfolding

I've been hard at work in the gym! The days are flying by and it is indeed true that days are getting shorter. There's just not enough time in the day/evening to do, write, read, see, say all I want to and I'm not even working! Christmas is around the corner and I'm already planning gifts but I haven't thought about thanks-schmanks! I like some turkey and whole cran-sauce. Other than that, I like peace and quiet. No drama. Pumpkin pie is a real treat! All that they have here at the facility. When I think of thanksgiving- giving thanks, I don't want to over do it this year like the past. I want to eat the right portion and not be in a coma.

I did an interview for Wheels of Progress (WOP) which culminated into more than we thought it would be! I started talking about how the nursing home system institutionalizes people and how it makes them lose motivation to keep them there and out of the community. I even gave specific examples of people who have the function to thrive in the community but lack the resources or the motivation to get out. Then, at the support meeting, another nail in the coffin! A T12 paraplegic who uses a POWERCHAIR speaks about how he wants to get out of Beth Abe, but doesn't know if he wants to work again. He's been here several yrs.

WOP is going to be a different organization. It's for people to progress to the community, work, give of themselves, not be in a nursing facility for an extended amount of time. After being here, I have different thoughts for what I want for my parents later...But as for younger people who are disabled but capable, we can have the option of living in and contributing to the community, working again, going back to school, being an athlete. You just need the drive. I see WOP as the resources and services to point you in the right direction: Residency, PT/OT, transition guidance into the community in a nutshell. As I speak with founder, George Gallego, I will fill in any gaps but I hope this idea will spread like wildfire! The nursing home system is sucking up money it doesn't have through insurance and it's so much cheaper for us to stay in our own place while getting the help we need. I'm excited to take part in this new project, see it unfold and take flight!