Just Raven

Often the patients I take care of are young men, who made poor choices that led them to meet me…poor choices or the victims of others who made them. It’s not always like this though; some of my patients were born with deficits that require the services of my facility. Katie is such a patient. She is an inspiration and those who think ending the life of one with severe disability ought to come meet this beautiful young lady…

Last week at work I sat through the graduation ceremony of 23 young and proud people who reside on the various units of my facility. We have group homes as well as nursing units. Many of these people worked very hard to get that diploma; they overcame extreme odds to get where they are. Katie was one of the diploma recipients. There was a time when many said she would die- that she wouldn’t make it to her first birthday, or her 5th, or 10th…and so on.

Katie is from Maine. She was born with cerebral palsy - an ancient catch all phrase that captures most of the physical and mental disabilities a person enters this world with. Today we have broken down CP to endless names, conditons, symptoms…yet in the end they all get almost the same treatment and care.

Katie came to my facility with several problems: She was 14 yrs old, severely malnourished (she weighed a mere 45 lbs and was 3′6″ tall). She was born with a profound hip dislocation, which led to a severe scoliosis, which in turn led to respiratory problems. Katie also presented with dysphagia, stomach conditions similar to ulcers, and tightness of her leg and arm muscles that was very painful. Just touching her caused her to scream.

Our inital assessments showed this malnutrition as being Katie’s most pressing need. Nothing could be done with her until her strength got better. So we recommended a G Tube placement ASAP, and that surgery was done within days of her admission. The inital response to that wasn’t good as so often happens. Getting used to having special formula feedings is apt to cause alls orts of problems. Once we found the right product for Katie she began gaining growing again. Within three months she gained 30 lbs and 10 inches in height.

Her weight stabilized, we were able to assess her other needs. The hip problem could be fixed with surgery, but the orthopedic doctors decided to wait until she was truly finsihed growing. Her scoliosis was a major concern as well- exrays showed her lungs had deviated to her right side. This showed up via constant respiratory problems- she needed to be suctioned often and she required neb treatments to clear up her lungs. We could not do manual chest percussion with her because it hurt her too much.
One thing the doctors did do was a simple surgery that released the muscles in Katie’s arms and legs: Snipping her hamstrings behind her knees relaxed her SO much she could stretch her legs out for the first time in her life. The same procedure was done for her arms in her bicep muscle. With the same results. Katie could use her arms for the first time in her life- and she used them well. She eventually was able to manipulate her right arm and hand to drive a power wheelchair.

Physical therapists began working with Katie with earnest goals. They stretched her, ranged her, splinted and casted her feet and hands….they took her into the heated pool for therapeutic swimming; Katie’s ROM improved so much she no longer needed pain meds. This was a BIG thing. We the staff working with her didn’t notice the gradual decreases in tears and grimacing while we bathed and dressed her. We didn’t notice the change in her affect whenever we lifted her: She used to tense up and close her eyes in anticipation of horrible muscle spasms…now she laughed at us while we joked with her (in an attempt to distract her)…
She opted out of back and hip surgeries because she had so little pain anymore.

Since Katie came to us a child, she was entitled to attend the school portion of the programs offered at my facility. This is a full fledged school, with 30 classrooms and dozens of special ed teachers and assistants. They serve every child regardless of mental capacity. In the nursing units we knew Katie was a smart girl. She used her eyes as her voice: Looking up meant YES and down meant NO. Katie could tell us just about everything so long as we asked the right questions. This limited her though. She could only speak on our terms.

The school focused on her communication skills. They also tested her mental IQ. Everyone was surprised to know that Katie knew the entire alphabet, her numbers- how to add, subtract, mulitply, divide and figure out just about any math problem. She could read books, write papers and participate in all the usual school activities. She just needed adaptations to show this. The easiest way for Katie to communicate to the world was through spelling: We would go through the alphabet and Katie would indicate YES when we got to the letter…this was a slow process though, oftentimes it took hours to help her write a paragraph. The speech therapists set about to work on this with computer technology. They wrote software programs just for Katie: It’s amazing to see this work. She uses a switch located up near her right eye, where she only has to turn slightly to activate. Phrases and words are pre-programmed onto her computer and she can write up a 10 page essay within a couple hours now. She is able to keep up with peers who attend regular schools in the area.

Katie wanted more. Her weight and general health got much better- she began to thrive. But she wanted to be as independent as possible. She wanted her own way to get around instead of relying upon staff. So PT embarked upon a mission to address this: They built her a power wheelchair. This is no regular wheelchair. It was fitted for Katie with special seating parts and cushions and pads for her comfort. It has the ability to recline, come forward, go up, down. Switches are placed at specific locations within the seat cushion- and attached to an activator Katie can use to decrease air flow, or increase it as she feels fit. When you or I want, we can shift our weight around as we sit. Now Katie can do this as well.

The chair also has a complicated system that is designed so Katie can drive. Her wheels. She uses her head and right elbow to go either forward, backwards, left, right…and the chair has 5 pre-set speeds. Every option on this chair is controlled by Katie. SHe drives this chair with skill and can get around very well. So well we granted her total independence a year ago: She can come and go as she pleases. The chair has a built in cell phone she can activate if she needs our help (we can change the settings to this special phone for her to call any number for help too…)

Katie has applied to colleges in the area and has been excepted at a very good one. Her plan for her life is to be an advocate for those with special needs. She has everything she needs to accomplish this, except one thing: In August, she will “age out” of my facility and she has to find a place to live. The state of Maine is responsible to help Katie with this. As too often happens, this means a drugery to people with disabilities. Katie still requires nursing care- she is dependent upon the G Tube for nourishment; she requires those ROM exercises to keep her limber and pain free. She needs total assistance for all her personal care needs- although she is continent, she needs staff to bring her to the bathroom.

These needs usually are met by an admission to a nursing home. Where elderly people live. This is where Katie will most likely end up living. A group home is possible, but the staff who work in these places are not medically focused. It doesn’t take a nurse to assist Katie with her needs, just some simple training and a visit once a week. But it’s not how the state sees it. Since they have the keys to Katie’s future, and hold the funding needed, Katie must accept what they offer. If she is admitted to a nursing home, she uses up her allotted funds-all of them. There is nothing left over for a private aide to help her get to her classes at the college she has been accepted at; no funds to transport her to and from. The nursing home where she would live would most likely be in Maine, far away from where her college is.

Katie worked very hard to get where she is. People like her fall though the cracks of the system. They want to better themselves. They are smart, and have dreams and desires. They want to contribute to society. They want to give back some of what they have recieved…they want to work in a meaningful job…They want to be as independent as possible…yet the system works against them. It is by far MUCH cheaper to house Katie in a group home setting vs. a nursing home. But it requires some effort and training, and it’s more difficult to staff these places. So the answer is almost always- nursing homes.

We are fighting for Katie. We want her placement to be appropriate for her- and we have an obligation to see to it that this happens. It’s called patient advocacy. My facility, my emplployer, has actually built specialized group homes in other states just so our patients have a place to move to when they leave. Through education and help, we have shown several states how to save tons of money by offering these programs vs. doing it the easy way- nursing homes. It looks like we’re going to be doing this with the state of Maine now.

There are better ways. And people with disabilities do have a lot to offer society. Katie is living proof of this. She wants to earn her own salary just so she can donate it back to her state as a gesture of thanks…how often do we see this? This young lady who beat the spoken odds all her life- the life so many disregarded and so many said wouldn’t last long. This life of a person, who lived with pain until she recieved the right treatment and care. If Katie were a child in the Netherlands, her life would be over now. She would have been euthanized. Because someone else would say: This life isn’t worth living.