Personal Experience

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.


Personal Experience

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.




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!

Personal Experience

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!

Personal Experience

“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.