NEW IDEAS ARE DIFFICULT

The following article was submitted for publication to the Baltimore Sun on December 29th, 2015.  It’s difficult to say, in under 750 words, anything that has nuance or depth, but, I did feel as though we should try to alert our Baltimore Community that this very unique project is seeking funding and the challenges we face.:

“I am from the minority called disability. It’s a complex group, some disabled from birth and most as adults, and if your disabilities are mental, nobody knows you have it just by looking. Unlike being a racial minority, everyone wishes the best for us. Our road to hell is paved by the good intentions of the nondisabled. You care. You pat us on the head and tell us to be strong, how brave we are, how amazing we are, and how impressed you are when we smile. Unfortunately, all this misplaced compassion, however kindly meant, really doesn’t empower us to live our lives or raise our families.

The IMAGE Center of Maryland, based in Towson, is working on a project that will literally change the lives of over 600 million people with disabilities throughout the world at a cost of under five million dollars, but, ideas that don’t fit neatly into our preconceptions, also don’t fit into existing funding mechanisms.   The IMAGE Center doesn’t see disability the way you probably do. We see much of disability as a tools and techniques problem rather than a limitation you must learn to accept. What the woman paralyzed wants to know is, “How do I get my life back?” How do I raise my kids, drive the car and get back to work?” And unfortunately, there isn’t any place on the web for her to see people just like her do these simple things. She can go on the web and search for “wheel chair cooking” but think about it for a moment. Being in a wheelchair doesn’t really tell you much about her. How much leg movement does she still have? Can she stand some? Can she move one leg but not the other? And, how much arm or hand use does she have? Some fingers on one hand but not the other? Left arm but not right? Each of these is important if she’s really going to see people who are solving the problem she needs to solve.

Recognizing this, the IMAGE Center is developing an online web sharing and search tool so she can see people, dozens or hundreds of them just like her, successfully living their lives and how they do it.   Think about everything you know how to do. You learned it by observing and imitating. That’s the way humans learn. Unfortunately, most people with disabilities, whether temporary or permanent, have never seen anyone like them and how they solve daily life problems. So, hundreds of millions of people throughout the world struggle to make a life without the essential of imitation.   With the modern web it is possible to create a video sharing site where people can specify their exact set of limitations and see dozens or hundreds of people just like them and how they create solutions for everything. We call it the Aging & Disability Skills Gateway. Check it out at: www.disabilityskills.org   For most of us, disability means care. Disability means less of a life except for those few who succeed that we regard as heroes and amazing, not realizing that these are just the creative few who can make up a life without that all essential roadmap of people to imitate.

Medical professionals want to cure us. Disability professionals want to care for us. The press wants feel good stories about the disabled hero overcoming all odds, or pictures of the ice bucket challenge, while ignoring the actual challenges of the disability itself.   Slowly we are making progress. A recent TED talk profiled our project as one of the three primary challenges of disability in the 21st century.   We here at the IMAGE Center leave 2015 frustrated. We know that out there somewhere are people who see disability as a problem to be solved. We know there are those of you out there who will join us as we create this new vision of disability. But for the moment, like other minorities, we still feel like the power structure and those who work in it are well intentioned yet misguided.”

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Meet Marvin Dawkins: Peer Outreach Specialist, Peer Mentor

Marvin Dawkins, Peer Outreach Specialist and Peer Mentor

Marvin Dawkins, Peer Outreach Specialist and Peer Mentor at The IMAGE Center for People with Disabilities

Marvin made three attempts to leave the nursing facility before he was able to move to his own home in the community. There were many difficulties and complications along the way.

At first, the court told Marvin his income was too high to qualify for services in the community through the waiver program. The second time he tried to leave the nursing facility, he was on a waiting list for three years, but never received services. The third time was a charm, Marvin said, and he finally received a voucher that allowed him to move into his own home in the community. His persistence paid off at last, and he was on his way to moving into his own apartment.

Once he was in his own apartment in the community, he encountered problems with accessibility. Marvin had to advocate for himself with property management to get these problems fixed.

One day, after Marvin left his apartment, he realized he left something there that he needed, but his aide had already left for the day. Marvin returned to his apartment to retrieve his belongings, but then he realized something – he had no way to get out of his apartment on his own, because there was no electric door opener. He was stuck. Marvin wrote a letter to the property manager about the problem, and 3 months later his electric door opener was installed, as well as an accessible showering system in his bathroom. Again, Marvin’s self-advocacy paid off.

During an interview, Marvin had some advice to offer others who are interested in moving out of a nursing facility and into the community:

“You have to really want it – to go after it and get it – otherwise you are going to be frustrated because everybody has things that come up and problems they are going to run into. You have to really want it.”

Marvin encourages people to make careful decisions about where they will move to:

“I tell people to insist to see the place before you move into it. There are certain things you need to make sure you can do with a disability or using a wheelchair; you need to be able to open the refrigerator door all the way, and you might not be able to even though the apartment says it’s accessible. A lot of the places just put a grab bar in the tub and call it accessible even though it isn’t. I know people who have lived for years without taking an actual shower – they just washed off instead because the bath wasn’t accessible to them.”

Marvin is appreciative of all the people who helped him before and after his transition to the community:

“I met a lot of helpful people out there. I couldn’t have done it on my own. Some of these people were support counselors or supports planners – they can help you the most because they know all the problems everyone else has had.”

Marvin also worked with The IMAGE Center during his transition into the community. Crystal Brockington was Marvin’s Peer Support Specialist and, after he moved out of the nursing facility, Crystal was also his Peer Mentor, with additional assistance from Lori Baskette. With encouragement from The IMAGE Center, Marvin participated in committees with the Long-Term Care Ombudsman and eventually the National Consumer Voice. Marvin currently works part-time at The IMAGE Center as a Peer Outreach Specialist and Peer Mentor, visiting residents of nursing facilities and coaching them on their options for receiving services in the community. Marvin also volunteers for Public Service Consultants to do additional peer outreach work.

“It’s rewarding – people cry [tears of joy] at the prospect of being able to leave [the nursing facility],” Marvin said. “Being out gives you a sense of self-worth that you lose in the nursing facility. The longer you’re there, the more everything just drops down – your morale, and everything you look forward to. There are so many things I can’t do, so I don’t ever think about those things – I just think about the things I can do and I try to do those things.”

Marvin has worked with residents in about 12 nursing facilities in Baltimore City, and he has helped over 100 people apply for waiver programs to receive services in the community. He is passionate about helping others to realize their potential for greater independence.

***

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IMAGE Center Success Stories: Meet Crystal and Stephanie

Crystal and Stephanie K 3

(Crystal Brockington left, Stephanie Klima right)

BACKSTORY

Stephanie is one of the dozens of individuals the IMAGE Center has helped transition from living in a nursing facility to living independently in the community.

8 years ago, Stephanie was placed in a group home after being diagnosed with pulmonary embolism. She was then moved to assisted living, and eventually to Manor Care Ruxton nursing facility where her health was stabilized. At the nursing facility, Stephanie met Crystal, a Peer Support Specialist from the IMAGE Center.

Crystal was helpful in showing Stephanie all the possibilities for living in the community. Luckily, after being on the waiting list for public housing for 8 years, Stephanie received a housing voucher at around the same time the Community Options Waiver program made the determination that Stephanie could move out of the nursing facility. A lot of paperwork was involved, but Crystal was there to support Stephanie as they worked together to make the move a reality.

LIFE IN THE COMMUNITY

Stephanie has always been an independent-minded person, and she is now extremely independent living in her own home in the community. She feels like she has power over what she does every day. Stephanie has MTA Mobility, taxi access, and the option of going to the League for People with Disabilities, to the Towson Center pool, or to the movies if she chooses. She is free to cook whenever she wants, she can have visitors as she pleases, and she can play music all the time. She manages her own medication, gets the durable medical equipment she needs, and was able to keep all of her doctors. She also gets 6 hours of personal care assistance per day in her home. Her budget is balanced and she says she has no financial worries. She enjoys a level of privacy that was never given to her in the nursing facility.

Stephanie says she now feels like she has a purpose, and her ambition to look really nice every day has returned. She is getting out more and is spending more time with her children and family. She recently went to her son’s graduation after he finished nursing school, and she feels like she is much more involved in playing the role of a mother. She is also motivated to put her professional experience as a makeup artist back to work again, and is considering getting involved as a volunteer to help women with disabilities feel beautiful.

Stephanie says she has changed a lot, and she’s a person who doesn’t normally like change, but these changes are good.

ADVICE TO OTHERS

During an interview, Stephanie said, “It’s important for people to understand that they should get on the [public housing waiting] list, because if I hadn’t gotten on the list 8 years ago, I wouldn’t have gotten out [of the nursing facility]. All the organizations worked very hard and very diligently; everything was explained to me. It’s not hard to do it if you just have the mindset to do it. If you don’t have the resources, all you have to do is ask, and they will help you.”

Crystal says that Stephanie was never scared to ask questions and openly talk about her concerns. Good communication is very important for making a successful transition from a nursing facility to the community. Crystal also mentioned that Stephanie was very proactive and involved in moving out of the nursing facility – “It’s doable for anyone if you really want it and you work hard enough for it,” said Crystal. With Stephanie’s involvement and commitment to open communication, and Crystal’s hard work and commitment to coordinate Stephanie’s transition, together they made a winning team.

Stephanie offers this advice to people who are considering moving from a nursing facility to the community: “You really need to decide that you want this independence – you want it 150%, and you have to go for it 150% on any avenue you need, which means documentation, communication, getting the paperwork done – and then that gives you hope. You see yourself moving along in the process and that gives you even more hope and gratitude; it makes you more humble and grateful, and it makes you happy that you’re here. I think a lot of us get stuck and we don’t quite know how to get out of the rut. People who want to take this journey – they need to not be prideful, and they need to take these opportunities when they become available.”

***

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David and Goliath: A Summary

by Joseph Barrett

by Joseph Barrett

Disabilities are a part of the diversity that is found in society.  While a disability may bring with it functional limitations, societal stereotyping, and lack of opportunity—it may also bring certain advantages in the right situation.  In fact, the advantage may be so dramatic that others fail to see the disability at all.  In David and Goliath, Malcolm Gladwell (2013) discusses the nature and history of being an underdog.  He begins with the Biblical account of David and Goliath, and follows with additional stories of people who defied insurmountable odds along the way to achieving great and unexpected feats.  However, for the purposes of this paper, the story of David and Goliath will be the focus.

According to the story, the Philistines and the Israelites were set to go to war with each other.  Instead, the Philistines sent their best warrior to take on any willing soldier amongst the Israelites.  This Philistine warrior’s name was Goliath—he “was a giant, six foot nine at least, wearing a bronze helmet and full body armor.  He carried a javelin, a spear, and a sword” (Gladwell, 2013, p. 4).  In addition, he had an attendant who carried his shield.  His opponent was a shepherd boy and skilled slinger.

Though David was small, he was agile.  In fact, he refused to wear bronze armor offered to him by King Saul, because it would weigh him down and force him to fight conventionally—which is what Goliath wanted.  However, David set out to fight the battle on his terms—the same tactics that helped him snatch sheep from the mouths of lions and bears.  He gathered “5 smooth stones” and charged off with faith and confidence that victory would be swift (p. 8).  He hit Goliath with a stone and most likely rendered him unconscious.  David then seized Goliath’s sword and cut off his head.

Generations of people have been telling this story from a religious perspective: trust in God, and ordinary people can achieve extraordinary results.  However, there are additional lessons to be learned from this legendary account.  First, perceptions can be misleading.   Goliath was viewed as a fierce warrior based upon little more than his size.  However, upon careful analysis, this view is questionable.  For example, for a battle tested warrior, Goliath moves very slowly.  He also tells David to come to him.  In addition, he has an assistant that carries his shield.  What are the reasons for these facts?

Gladwell (2013) offers up convincing evidence that Goliath was not a fierce warrior at all; in fact, he may have had a debilitating disease known as acromegaly (p. 14).  Acromegaly is a “disease caused by a benign tumor of the pituitary gland,” which “causes an overproduction of human growth hormone” (p. 14).  Another side effect of acromegaly is vision impairment.  More specifically, “people with acromegaly often suffer from severely restricted sight and diplopia, or double vision” (p. 14).  This may explain why Goliath had an attendant: under the guise of carrying his shield, the attendant “was his visual guide” (p. 14).  Additional proof of Goliath’s vision impairment can be seen when he shouts “Am I a dog that you should come to me with sticks?” (p. 14).  The problem with this statement is that David is carrying only one stick, while Goliath sees multiple.

Secondly, David may not have been the true underdog in this situation.  The fact that Goliath was slow and wearing “over a hundred pounds of armor” put him at an incredible disadvantage for combat that was not with another “heavy-infantryman” (Gladwell, 2013, pp. 10-11).  Furthermore, David’s small stature and agility gave him an edge—he was too fast for Goliath.  He was also a fierce opponent in his own right.  For example, “in the Old Testament Book of Judges, slingers are described as being accurate within a hair’s breadth” (p. 9).  In addition, “an experienced slinger could kill or seriously injure a target at a distance of up to two hundred yards” (p. 9).  Gladwell (2013) reinforces this point by citing a ballistics expert who claims that “a typical-size stone hurled by an expert slinger at a distance of thirty-five meters would have hit Goliath’s head with a velocity of thirty-four meters per second—more than enough to penetrate his skull and render him unconscious or dead” (p. 11).  The expert goes on to compare the slingshot’s power to a “fair-size modern handgun” (p. 11).

To be clear, Goliath did not have much of a chance against David and “the very thing that gave the giant his size was also the source of his greatest weakness” (Gladwell, 2013, p. 15).  This is further proof that the “powerful and the strong are not always what they seem” (p. 15).

Gladwell (2013) proceeds to examine the case of David Boies—“one of the most famous trial lawyers in the world” (p. 108).  Boies is dyslexic; however, he compensated for his limited reading ability by becoming a good listener with a strong memory.  He explains this advantage in the following manner: “If I could read a lot faster, it would make a lot of the things that I do easier” (p. 110).  However, “not being able to read a lot and learning by listening and asking questions means that I need to simplify issues to their basics,” which is helpful in “presenting a case [jurors] can understand” (p. 111).  In effect, a disadvantage according to some, turned out to be an advantage in Boies’ case.  The term “desirable difficulties,” coined by Robert and Elizabeth Bjork, “two psychologists at the University of California, Los Angeles, captures the essence and beauty of “how underdogs come to excel” (p. 102).  Difficulties or limitations are often highly functional in specific situations, and this theme is found throughout David and Goliath.

In sum, individuals who are deemed to be at a disadvantage may possess some trait or characteristic that makes them the perfect person to confront an otherwise daunting task.  The traits that society often values are not necessarily the traits that enable one to dig down deep and stretch themselves to meet a challenge.  Being strong and skilled in one domain may be a liability in another domain, just as being weak in one situation may be an asset in another.  Therefore, in all situations, individuals should scratch beneath the surface to identify what the scenario requires for a successful outcome.  In addition, before assuming one has an advantage or disadvantage, it would be wise to analyze how context can distort reality.

By Joseph Barrett

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I’m Not a Very Creative Person

By Mike Bullis

 

The title of this blog may seem like a put-down.  In this day and age when everyone is supposed to be positive and filled with belief in themselves, we’re taught that we can do anything.  Just think it up and away you go.  Whatever you believe you can do is possible.

Are you waiting for that dream job at which you will excel and enjoy every day?

Want to become a scientist?  No problem.  Want to invent the next million seller app?  Just believe in yourself and it’s all possible.

Well, frankly, that’s utter nonsense.  The truth is, we’re not all able to do anything we wish.  “Wishing,” as the old saying goes, “doesn’t make it so.”

Each of us represents a set of aptitudes and skills and if we want to do something, and be successful at it, our desires need to be tempered by the reality of what we bring to the table–those skills, talents, aptitudes and knowledge pieces that will make it work.

Being a scientist, depending upon the field, requires meticulous attention to boring experiments that often go on for years and produce nothing exciting, reading thousands of papers to find that one idea that will make a difference in your thinking.  Developing that next cool app requires that you become a code writer and then that you understand what the public wants, not what you want.  It’s very hard work.

When I say that I’m not a very creative person, it’s not a putdown.  It’s the conscious acknowledgement that I don’t come up with many new ideas.  There’s nothing wrong with that.  I leave the inventing to others.  I’m an implementer.  In other words, I can take the ideas that others come up with and do them.  Somebody has to.  Would I like to be Bill Gates or Warren Buffett?  Sure I would, but I’m not them.  I’m Mike Bullis.

And, would I like that dream job at which I excel and enjoy every day?  Sure I would.  But, in the meantime, eighty percent of my day is spent doing the boring and tedious work of managing a Center for Independent Living–budgets to read, expenses to control, employees to supervise, meetings to attend that often seem pointless and endless.  The other twenty percent of my day is spent doing my passion, which is changing what it means to have a disability–advocating, motivating, writing and speaking.  That twenty percent is enough.  I love my job because I get to do the twenty percent.  But, I’ve had plenty of jobs where I got to do far less than twenty percent expressing my passion, and that’s fine too.  It put food on the table.

I do the eighty percent so I can do the twenty percent.  The eighty percent is the daily drudgery of life that must be done so I can explore my passion in those twenty percent moments.

I get the impression from many people with disabilities that they have been handed a load of nonsense when it comes to dreams and goals.  They’ve been told that they should fulfill their dreams and passions and everything will be wonderful.  And, the worst part of it is that the people who are telling them this are lying through their teeth.

Very often when somebody tells a person with a disability to “follow your dream” they mean this, “I don’t have any idea what you can do with your disability.  In fact, I don’t have the first clue what I would do if I were you because I’d be devastated.”  So, they spout all this nonsense about following your dreams because they don’t believe you can do anything and sure hope you’ll come up with something.  They want to be positive and so send you off on some dream exploration.

My advice is pretty old fashioned and simple.  Figure out what you’re good at.  It’s usually something you like well enough to do, even when it’s hard and you’re tired.  In other words, figure out what you’re willing and able to do that matches your skills and abilities.  What did you get good grades in in school?  Did you do better than most people in some area?  Explore that.

And, in the meantime, get a job, almost any job.  Forget about your dream job and just learn the discipline of having to show up every day at a particular time and place and do work!  Yes, just plain old work.  It develops your work muscle, which is important.  Along the way, you’ll discover your strengths and you’ll perhaps learn your passions.  But, it starts with simple old fashioned work.

Work isn’t just something that was invented by employers to keep us down, although that might just be the result.  Work is something that stretches us and helps us develop physical, mental and emotional discipline.  Those are pretty important skills to have.

If, at first, you need to volunteer, do it!  It may help you see what work life is all about.  It may help you find what you’re good at.  Whether you get paid isn’t important at first.  Just getting in the workforce and seeing what is expected and how you measure up are the important skills you’ll gain.  And, if you do begin contributing to the bottom line of the organization through your efforts, most employers will hire you.  If they don’t, you have still gained the knowledge and work muscle that you’ll need for that next opportunity.

So, I won’t be going to work tomorrow as an inventor, and that’s just fine with me.  But, when someone invents something really cool, I’ll be glad to use it.  And that really makes me happy.  I wish for you the knowledge of what you’re good at and, along the way, just maybe, you’ll find your passion.

 

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Constraint –Induced Movement Therapy

By Lisa Labre

My son Chase has cerebral palsy which for him affects the right side of his body.  His entire right side is weaker than his left side. This has affected his ability to do anything that requires the use of both hands. I found out about the Constraint –Induced Movement Therapy Program at Kennedy Krieger and that my son was eligible for the program.

The Wikipedia definition of Constraint-Induced Movement Therapy is a type of rehabilitation therapy used for improving upper extremity function in individuals who have had a stroke or damage to the central nervous system.  The goal of the therapy is to improve use of the affected limb.  There are a variety of restraints used to keep the intended limb from moving. The therapy was discovered by  Dr. Edward Taub,  who’s infamous animal testing gave birth to the animal rights group PETA.

In layman’s terms, Constraint –Induced Movement Therapy is when the unaffected hand and arm is secured in a way to prevent movement. Therefore, making the affected hand and arm the only option for use.

He first attended the Constraint-Induced Therapy during the summer months so it wouldn’t interfere with school.  Therapy began with the therapist securing a cast on his left arm that covered the hand and went a little past his elbow. This ensured that there would be absolutely no help from the left arm and hand. He had to completely rely on his right arm and hand for everything until the therapy was completed. He attended Occupational Therapy Monday through Friday, three hours a day, which targeted the use of his right hand and arm.

Practitioners have said that repetitive exercises with the affected limb help the brain grow new neural pathways, which has become known as neuroplasticity. After a few weeks the therapy was done and the cast came off. At first, my son was unaware he could even go back to using his left hand and arm. He continued to use his affected right side. It wasn’t until 24 hours later that he realized he could start using his left hand and arm again.

Chase is now seven years old and has retained some of the strides he made with the therapy. He has since repeated the constraint program and is due to start the program again in August. His affected hand and arm has a more relaxed position. He is now conscious of being able to use both hands in everyday situations.  His left hand and arm will always be dominant but, I think with time, maturing, and more therapy he will improve. It seems like new ideas and therapies are always replacing the old ones. In my experience the constraint –induced therapy had a time tested positive result for my son.

photo(1)

 

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“Dear God, Make Me a Bird so I Could Fly Far—Far, Far Away From Here”

Hello there. My name is Joseph Barrett.  I, like many of my readers, have a disability.  I was injured in an auto accident in 1992 and damaged my spinal cord.  I have been in a chair ever since.  More about me later.

Fly away

Fly away

Let me tell you a story about the birds and the bees. Well, actually, it’s really just about the birds. For as long as I can remember, I was never all that keen on owning a pet bird. This disenchantment probably began when my mom got coerced into adopting someone else’s lovely feathered friend.

I’m just going to put this out there–that bird needed to die … a lot! Seriously, how could such a small animal consistently make such outrageously loud sounds while I was trying to oversleep?

Every now and then this bird would manage to escape its cage and fly all around the house. Inevitably, it would make its way over to the curtains by the sliding-glass door—seemingly waiting for the opportunity to fly off and be free forevermore.

However, this bird never wanted to fly off and soar to great heights. In fact, it would always return to its cage—the same 2×2 confined space that inhibited its ability to fly great distances and explore exotic habitats while being completely independent in finding food and a mating partner(s).

All of this wondrous ability was lost because people insist on domesticating birds. If a bird is hatched in captivity or caged after being captured, the tendency is probably for it to explore and fly off whenever possible. After all, it is their nature to be free. Over time, a caged bird begins to exhibit a common pattern of resistance, which is subsequently followed by acceptance. Some folks refer to this phenomenon as ‘learned helplessness.’ The bird has learned to love the cage.

You knew where I was going with this, didn’t you? Learned helplessness and acceptance of a life that is unfulfilled is found all too often in our society: individuals who choose to stay in bad relationships; those who are unhappy in their job; and folks who give-up because of a disability are just a few examples. To be fair, starting all over again can be tough, and that is why people cling to an otherwise miserable situation.

Consider the life of an individual with a disability. Having a disability and being limited in some area of life is one thing, but being able to do more and not trying is a tragedy. For that person who is paralyzed, you start to wonder whether she or he is more immobilized by their disability or their fear. I’m not trying to sound like Tony Robbins, but it takes courage to step outside of your comfort zone. Real courage is found when one acts in the face of uncertainty. It is found when one lets go of their glory days and old identity. Of course, this doesn’t mean that you must forget good times and old memories hanging with your pals, but you get the point—people must move on. No one cares who you were.  Besides, do you really believe that you were the best that you could be in your teens or twenties? It’s kind of pathetic to feel this way, but it’s something that plagued me for a long time.

Just about to turn 17

Just about to turn 17

I was a very muscular and athletic kid—I played sports and was at the gym all the time.  Though I was always in gifted and talented classes, I chose to focus on ephemeral traits, such as athleticism.  The enduring qualities of a healthy intellect and an eagerness to learn were neglected.  After becoming disabled, those are the traits that I needed to focus on more than ever.

In the rehabilitation field, people love to conceptualize adjusting to a disability as a stage process.  Below is a basic overview of these stages, which will include a bit of detail about my experience.  Keep in mind that everyone’s adjustment is unique and specific to the person.

Stages of Adjustment

Shock: in the shock phase, the “individual’s thinking is often disorganized, and he or she may be feeling overwhelmed and confused” (Smart, 2009, p. 392).  I was a senior in high school when I was injured.  I had Navy and Marine recruiters trying to undermine each other’s recruiting efforts so that I would sign with them.  I chose the Navy. 

Being lectured by my mom at Shock Trauma

Being lectured by my mom at Shock Trauma

In the blink of an eye, all that changed. I was flown to the University of Maryland Shock Trauma on May 1st, 1992 and discharged to A.I. DuPont 11 days later to begin a 6 month long rehabilitation regimen. I was broken and overwhelmed.

Ouch

Ouch

Defensive Retreat: in this stage, the individual often employs temporary adaptive strategies, such as denial. For example, he or she may deny: the “presence, implications, and permanence of the disability” (p. 393).  Denial can be functional in the initial stages of one’s disability as it prevents “emotional flooding” (p. 394).  However, over the long term, denial can be counterproductive and inhibit adaptive change and acceptance (p. 396).  Denial quickly became my best friend.  I was going to beat the odds and walk again. 

All of these terms and routines that doctors, nurses, and therapists were lobbing at me were irrelevant.  I regained the use of my arms—the legs were next!

Depression or Mourning: in this stage, the individual “often withdraws from others and has trouble sleeping, eating, and concentrating” as he or she “struggles with questions of an uncertain future and an uncertain identity” (pp. 396-397).  Late into my rehabilitation, the gains slowed.  It was becoming obvious that the legs weren’t coming back.  I slipped into a deep depression and refused to eat.  I lost 30-40 pounds and wanted to sleep all day.

Personal Questioning: common in this stage is questioning about why the disability was allowed to happen and what could have been done to avoid it (pp. 400-401).  “Why me?” I must have asked that question a million times.  This was supposed to happen to other people, not me. I was raised Catholic and had Jesus on speed-dial: “Hey God, get me out of this chair and I’ll do a whole bunch of good stuff.”  It didn’t happen.

Adaptation, Change, and Integration: at this point in the adjustment process, the individual “understands and accepts the reality and implications of the disability, establishes new values and goals …, and explores and uses his or her strengths and abilities” (pp. 402-403).  As much as I would like to say that these events happened in rapid succession, they didn’t.  In the words of Axl Rose, “Welcome to the Jungle.”  This is the dark side of the disability experience—long periods of isolation.  In my situation, we’re talking about a good 5 to 6 years.  As in the opening vignette, I had become like a caged bird.  I didn’t date.  I didn’t talk to many people.  I simply went away.  I read lots and lots of books.  I finally came up with an answer to the question “Why me?”  Here it is: “Why not me?”

When people would ask me what I did for a living, I got so embarrassed—I just didn’t have a good answer. I saw people in chairs driving cars and living their lives.  That’s what I wanted, but I couldn’t seem to put the pieces together.  I had problems with my body image and became so self-conscious that I couldn’t even look people in the eye.

One day I just had enough.  The fighting spirit started to come back.  I remembered seeing a guy at Maryland Rehabilitation Center (now the Workforce & Technology Center) with a similar injury drive a van.  That experience was so powerful in giving me the confidence to rebuild my life.  I began to let go of the victim mentality and started to put together a plan of action—I came out swinging.

I contacted the Division of Rehabilitation Services for a driving evaluation and eventually started to drive again.  I enrolled in school and graduated Summa Cum Laude with a BS in Psychology.  In addition to working at The IMAGE Center, I am now an intern at the Division of Rehabilitation Services with 1 class left to  finish my M.A. in Rehabilitation Counseling.

So, what about you?  Is any of this applicable to your situation?  Is there any fight left in you? If you’re struggling with your disability and want more from life, I would welcome the opportunity to work with you.  There is no reason to waste  time in isolation feeling helpless.  Contact The IMAGE Center—let’s kick open that cage and reclaim your life.

References

Roth, E. (Director). (1995). Forrest Gump : Paramount Pictures.

Smart, J. (2009). Disability, society, and the individual, 2nd Edition.  Austin: Pro-Ed.

Posted in Isolation, Learned Helplessness, Rehabilitation, Spinal Cord Injury, Uncategorized | 6 Comments

Successful Transition from Nursing Facilities to the Community

By Lori Fitzell

New Programs

For those of you who haven’t heard, there have been recent changes to the Medicaid Waiver programs in Maryland. Beginning in January of this year, the Living at Home waiver and the Older Adults waivers merged to become the Community Options Waiver. This is a great thing because now, the

Services provided in each program are available to anyone who applies. Besides this, there have been some new services added as well. So now a person who lives in a nursing facility and applies for and gets a waiver can have community services like attendant care, case management/supports planning, a personal emergency response system, transitioning funds, Meals on Wheels, assistive technology, environmental modifications, Medical Day Care services, Assisted Living, Senior Center Plus and more. Again, these are all options you can choose from with the new Community Options waiver program.

In addition to this waiver, another program also started that provides similar services for people who are already living in the community and need attendant care.  The CFC or Community First Choice program can provide the same list of services as stated above but it does not cover any Medical Day Care, Assisted Living or Senior Center Plus services.

Lastly, people who were receiving up to 2 hours of help through the MAPC program (Medical Assistance Personal Care) can now receive more hours if they qualify. They are also eligible for Case Management and Nurse monitoring. In addition, the care staff now must be first aid and CPR certified. They will also be listed in a searchable provider registry online (sometime this year).

Successful Transitions!

It’s easier than ever before to move successfully from a nursing facility to the community using a waiver.  Once the services have been put into place, you’re in the driver’s seat (with support as needed from your Support Planner).  This starts, in my experience, before you even leave the nursing facility. While you are waiting for the waiver processes to get completed, you should begin interviewing and hiring your personal care staff. Get help from your support planner if you want it; otherwise, gear your interview questions around the way you want your day structured and the expectations you have of your staff. Make sure to schedule them to come in at times that fit your lifestyle. Do you want them to do the food shopping for you or do you want them to accompany you to the store to assist you with the shopping? How much of the cooking, cleaning, bill paying, laundry and fun activities do you want them to be a part of?

There is usually a Discharge meeting held about a week before your move to the new place. This is the time to involve your family, friends, doctors and support planner. What services need to be put in place; will you need a hospital bed to be ordered by your doctor? Are you able to get a 30 day prescription of your medications before you go? Is your staff scheduled to begin working the day you arrive home? Can family be involved to help with the physical move? Can someone be in charge of getting toilet paper, paper towels, cleaning supplies and anything else you might need in the first few days?

As time goes by, you will find that family and friends will not be as available on a daily basis and it is time for you to guide how your life looks. You will need to be a good Employer and train your staff to do things the way you like to have them done. Develop a good relationship from the beginning, setting boundaries around good work ethics, responsibilities and other expectations. Set up a back-up plan for when people are sick or weather is really bad.

This is also the time when you will be establishing your routine and making decisions about what you want to do with your new freedom and the community you are now a part of. Are you interested in volunteer or gainful employment? Do you want to belong to a Friday night bowling league or attend church? Are you interested in looking for a long term relationship? This is the time to develop your interests, be a part of your community and enjoy life to the fullest!

So What Could Go Wrong?

Services for people with disabilities certainly have gotten better in the last 10 or 15 years but along with every great program(s) comes concessions and reality. In an effort to provide waiver-like services to people who live in the community already, the CFC program was started in January of this year. Very simply put, that means that waiver funding needed to be stretched even further to accommodate more people. In talking and working together with various service providers in Maryland, we are finding out that people who might have received up to 12 hours of attendant care daily on the Community Options waiver, are now receiving only about 5 or 6 hours per day.  A new assessment tool called InterRai is being used together with a system of allotting money for the amount of care needed, called RUGS (Resource Utilization Group)  This results in the disbursement of less time for attendant care than when previously using the AERS ( Adult Evaluation and Review Services) assessment tool in the past. Mike Bullis, Executive Director of the IMAGE Center is a strong advocate and is leading the crusade at the state level to help replace adequate attendant care hours to waiver participants whose hours have been cut. In the meantime, what you need to know is that 1) this is happening and could affect you if you are now or will be taking part in a waiver program, 2) that you should work with your Supports Planner to ask for an exception if you do not get a sufficient amount of hours, and 3) if the exception doesn’t yield better results that you then file an appeal. Again, your Supports Planner can and should assist you with all or any of this. Remember that you are the best advocate in your life and if you feel your health and safety is at risk for any reason, you need to speak out loud and firm for yourself.

If you wish to join Mike and the IMAGE Center in the fight for adequate attendant care hours, please call us for more information.

Anything else?   

So glad you asked! Depending on how long you’ve had your disability and how much time you have spent in the nursing facility, you might not have a clear idea of how much you can and can’t do for yourself when you get back out on your own. Since you’re in a nursing facility, you are handed your meds, your meals are prepared for you, your laundry is done for you someone helps you shower…you get the picture. I suggest that while you are still a resident, that you talk with your social worker or the nurses’ station and ask them to help you do more on your own. I know…they may look at you like you have 2 heads, but ask them to just supervise you doing tasks independently for awhile until you find out how much you can actually do on your own. Then when you do reach your “Home Sweet Home “destination, you will have a better idea of how hourly attendant care staff can assist you and how much you can do by yourself. Also, don’t forget that you can get some assistive technology that could help you get dressed, cut your food, stay safe in the shower, etc. If you have any questions, please call us!

If you are already in the community and your family is handling all your business and “taking care” of you, ask them to give you some space and time to see how much you can do on your own as well. Whether you will be staying in your current home or moving to another apartment/place, you need to be aware of all that you can accomplish independently and how much you will be needing assistance.

All your life you’ve had a boss and now you need to be one? Now that you’re out on your own (with supports) you will need to train your staff (yep, your staff!) to complete the tasks you need assistance with, using the method you prefer.  This is your life, your home and your stuff! Teach your staff how to do things the way you like.

Along the same lines, train your staff how to assist you with your physical needs. They should be coming in to start the day at a time that is congruent with your lifestyle and preferences. Let them know what you would like the day to look like; do you like to shower in the morning or evening hours? Should they do the shopping with or without you?  Could they get you ready for the day and then leave for a few hours and come back in the evening hours? Should they cook for you, do you need help with cleaning?  They should be helping you with the things you cannot do, the way you want them done.

Make sure they are coming in on time and respecting your wishes and your home. Let them know when they can take a break, talk on the phone, eat their lunch, etc. Let them know if they are breaking the rules (did you teach them what the rules are?) or if they are not doing something to your expectations. Do you have an agreement that they can bring their children with them on Tuesdays?  Can they leave early on Fridays if they stay late on Wednesdays? In other words, decide when, what and how you want things done then make sure to train your staff well!

As I mentioned before, a back-up plan is a must! If your staff get sick or want to go on a vacation, you will need to have at least 1 other person who can fill in relatively quickly. When you hire someone is the time to set up some back-up people, not when the situation is already happening. See if your attendant knows of some other people or use family, neighbors, friends, anyone you feel comfortable with.

Part of being a boss is knowing when to let someone go. This is not an easy task for anyone but it is especially difficult when you have to rely on someone for your physical needs. Your Support Planner is someone you can rely on to assist you with interviewing a new person/people for the position. He or she can also assist in the firing and transition process if you want.  Keep in mind that if a staff person is abusive or neglecting you, you need to let them go today, not tomorrow. You may also need to call the police or Adult Protective Services. If there is ever any question about what to do about a situation like this, the IMAGE Center is always here to answer questions and offer guidance.

Okay, so now that I’ve scared you to death, good luck!

Seriously, do what it takes to live a safe and happy life! Decide where your heart says you should live. Then find the services and people you need to support you in getting there.  Have pizza and beer on Friday nights, work a full or part time job, look for someone to date, join a volunteer organization, meet friends for lunch, stop at Starbucks for coffee, check out a new church…you get my point!

 

Enjoy life!

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Fashion Tips 2014

By: Imani S. Graham

Just because you are disabled or visually impaired does not mean your clothes must be less attractive.  My name is Imani Graham and I am blind. However, I take pride in my clothes and my overall appearance.   This does not mean I spend a lot of money on my clothes.  In fact, you can find very nice things at affordable places, such as: the thrift store; Ross; Marshall’s; or Wal-Mart.  It bothers me when people say they cannot match their clothes or no one is there to help them dress.  According to these individuals, this is why they look the way they do. There are all types of devices and gadgets that can assist with identifying colors on clothes. Such as: color identifiers, which is a device that will say the color of a piece of clothing. There are also free applications for smart phones that are color identifiers as well.

As a rule of thumb, it is 2014 and there is no such thing as mismatching, as long as you accessorize. What do I mean? If you are wearing a red top and a black and white skirt, as long as you wear red shoes or a red bracelet you are good to go. Three colors is the max now for dressing—meaning you can wear a gray shirt, some black pants, and silver shoes.  Or, you can wear a pink top, brown pants, and gold shoes. When in doubt, accessorize—match your shoes or jewelry with a piece of your clothing.

There is no reason why you cannot be as fly as you want to be or look as good as you want  with a disability—if I can do it, so can you.  My co-worker, who is in a wheelchair, always makes it a point to wear nice shoes.  Joe likes to whip out his wheelchair humor (which is usually really boring) by saying his soles are saved because they’ll last forever!  You can catch him on any day coordinating his dress shoes with his outfit.   It should come as no surprise that he is cooler than the Fonze!  The question you must ask yourself is: “What kind of image do I want to portray?”  You want people to look at you and say “Wow, this person has all of these challenges, but they make sure they look nice!”  Let’s be honest, you do not want people to look at you and say “Oh, they are disabled—they can’t help it.”  The choice is yours.  Appearance is what you make it; and, just because you are disabled does not mean you shouldn’t care about the way you look.  First impressions are typically based on appearance, so when you are looking for a partner or a job, remember that!

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B and D, Same But Different

By: Kirsten Robb-McGrath

Often we hear the phrase “I must be dyslexic today,” when individuals spell words wrong or flip numbers around even if they may not actually have dyslexia.  I am dyslexic, but not just for one day alone or occasionally, each and every day I am dyslexic.

Let’s start from the beginning, when my family found out I had dyslexia.

This portion of my story is told to me since I do not recall my kindergarten years very well now.  My mom tells me that my kindergarten teacher Mrs. Brazeal noticed that I was having trouble with reading and letter recognition.  Like most kids my age I reversed my b’s for d’s, which later worked itself out and I am no longer Kirsten Rodd-McGrath but properly Kirsten Robb-McGrath.  However, a few slips ups of d’s for b’s would not cause such concern from my kindergarten teacher, there was more to it than that.

With guarded warnings that I may not be able to keep up with the pace of first grade, I entered and the concerns escalated.  My first grade teacher, Mrs. Zarchen did not feel I was ready to be in her class.  At this point my parents felt that it was time for me to be tested.  Some of this period I actually do remember.

There can be a lot of negative stigmatism put around the idea of testing.  It can also be overwhelming, terrifying, and just plain boring.  I am not one to say that testing isn’t any of those things; it can be one or all of them at the same time.  However, in my family’s case, testing meant that I could then work towards finding different learning styles that would work best for me.  To begin, I saw two different types of doctors, a Developmental Pediatrician and a Children’s Psychologist.    The Developmental Pediatrician tested my verbal abilities by showing me flash cards and asking me to identify the objects.  The child Psychologist tested my IQ.  After testing was completed both doctors agreed that I had dyslexia.  My teachers believed I had Attention Deficit Disorder (ADD) so for a little while we experimented with medications for that.  However, that turned out to be a mistake.  The medicine was ineffective and I suffered through some pretty bad side effects.  So, when the drugs did not work we decided that it would be good to try alternative methods to help develop my skill-sets further.

At the beginning of second grade we found a tutoring service that worked with students with dyslexia in Columbia, Maryland.   They used the Orton-Gillingham method to teach reading.  For two hours every day I would go to this center and work with my five senses to learn to read.  While there I wrote in the sand and whipped cream, listened to the alphabet and would repeat it in a mirror, I would write out letters using the color marker that matched the first letter, we would use smelly markers to do the same method.

At this time, my parents registered me for piano lessons, which were recommended by the teachers in Columbia.  It involved the sense of touch, hearing, and sight.  It was believed that involving numerous senses and reading musical notes from left to right would help with reading aspects in general.  I loved both the tutoring program and the piano lessons.

After a year at the Columbia site my skills really began to improve.  We sought out a tutor closer to home.  I worked with Mrs. Yannes once a week on my reading and writing skills.  I was instructed to read part of a book and then I would answer questions the following week.  I was able to work on my homework with Mrs. Yannes as well.  This helped me fine-tune my skills.  I worked with Mrs. Yannes through fifth grade.

Tutors, however, were not my only accommodation through school.  In elementary and middle school I had a 504 plan, some of you may be wondering what that is, so let me explain a little.

A 504 plan is similar to an Individual Education Plan, in that it provides supports through the school system to help individuals with disabilities receive and achieve academic success.  Some of my supports included having instructions read to me, dictating into a recorded and having others transcribe my answers, and being allotted extra time for testing.  Sometimes my accommodations were met with resistance.  My support staff and teachers would sometimes ignore my accommodations or try to change my answers based off of what they thought was more appropriate.  I was always a creative thinker and just wanted that aspect of myself to be seen in my work.  After much determination and hard work I excelled through my classes and no longer needed my 504 plan in high school.

From an educational viewpoint we had learned that I had dyslexia, and we worked through it to strengthen my skills, but it affected me socially as well.  Early on I was embarrassed to read aloud in class, I hated any writing assignment, and I occasionally felt inferior to my peers.  I have two very vivid memories that I’d like to share that are both painful and uplifting all in the same breath.

The first memory I’d like to involves a pool party with family and friends.  Myself and some other kids were playing in the pool and talking about school, I had mentioned that I had dyslexia.   One of the kids turned to me laughed and said, “haha so you can’t read.”  I stared him down and said, “I can read, and I can probably even read better than you.” My sisters chimed in at this point and said they agreed with me that I probably could.  In this moment, it is sad that people misunderstand and judge right away and even laughed.  But I found my voice through my disability and stood up to this young man.

The other memory pertains to school and writing.  I was in Advanced Placement (AP) English and we were assigned to write parts of our paper and post them around the room to be critiqued by the class.  I wrote my opening paragraph and posted it on the wall.  My teacher then read the paragraphs out loud.  Then, we were given critiques from both the teacher and the class.  After reading my paragraph, the students gave constructive criticism, but when my teacher shared his opinion, he ripped me apart.  He said that it was garbage and whoever had written it probably should not have been in AP English.  He then passed the paper back to me in front of the whole class.  I was devastated.  I came home from school so upset I could barely talk.

My mom and I set up a parent teacher conference.  We explained my struggles with writing and how as a teacher I should be receiving constructive criticism, instead of feeling like I no longer belonged in that class and that my writing was “garbage.”  The teacher felt horrible for what he did and apologized.  My confidence that I had worked so hard to build up had been ripped down by one comment.  Needless to say the rest of that year and still to this day, I struggle with confidence in my writing.  Despite this, it hasn’t stopped me from trying.

I am dyslexic today and every day.  It is a part of me that I will always work on.  I do this by, finding ways to help my spelling, re-reading my papers numerous times to make sure it says what I want it to say, and reading books, magazines and articles to keep my skills sharp.   I was lucky to have such supportive parents to help me work through these struggles and who taught me never to look at or use my disability as a crutch.  So yes I have dyslexia and it does define me, but I think it defines me in a good way.

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