EDITOR’S NOTE

The following letter was posted on Complex Care, an email site for MD specialists in complex medical care. It was in response to a New York Times article on this topic.

Hello,

This was indeed a heart-wrenching and accurate article. It is also the very tip of the iceberg.

The nursing shortage will not go away, it has always been a challenge. It is not just the money either. As much as these heroic nurses care about their patient, there is no advancement, poor benefits, limited social engagement and a bit of isolation. In short, it takes a very specific kind of nurse, just as it takes a certain kind of nurse for the OR, ER, ICU and so on.

Here in Texas, if you do not qualify for skilled nursing (a very biased criteria of mechanization) the state’s hourly rate is $11.00/hour for the CLASS program. We were 8 years on the waiting list and we are currently on another list (less hours but $15/hour) where there are over 100,000 clients before us. I am not sure I could hire a babysitter at this rate any more and my son is 30.

Having experienced a catastrophic hypoxic event at birth, now 30 years old, this road is well travelled for us. I am a nurse, so that helps, but his care has prohibited me from working consistently outside of the home. I had 15 years experience in cardiovascular nursing prior to his birth.

I see 2 solutions to this dilemma.

1. The state changes the tier of care and adds perhaps a middle level of care. Codify needs accordingly. A blind, quadriplegic, oral feeding, profoundly delayed, non-verbal, orthopedically and medically fragile patient (my son) needs a skill set quite different than a person with intellectual disabilities or mobility issues but no cognitive issues and so on. One size fits all is just not a strategy. The term custodial care is an insult.

2. The hospital systems could ameliorate some of the isolation and access by creating a respite unit that dove-tailed with home care. An in-house corp of nurses (CNA’s, RTs, PTs?)who could also work in someone’s home. These could be rotating positions. That would answer training, benefits, advancement and a host of other problems. This could be broadened to an out-patient respite facility with the same and more support for families.

The take-away is that no one, except the families, have skin the game in the home setting. Our son is now 30 and if you think getting nurses was hard, just think about caregivers in general. This population is the canary in the coal mine, but there is no institutional will to change the status quo. The loudest voices have the time and energy, and sadly, many of their children have died and so they can. The rest of us are beyond fatigued and are simply feverishly treading water.

I have been on this list serve since its inception. I see this issue come and go. I never see the change we all aspire to.

Sincerely,

Diane Stonecipher, RN, BSN.

There are two guiding principals for special education: a free public education and an IEP tailored individually.

However one must step back and look at public education and it’s principal mission. For the most part it strives to prepare children to read and write; perform skills to enter the workforce while introducing principles and practices of civil society. As you might imagine the vast majority of children will be suitable for such broad goal.

Now faced with the task of educating and providing therapeutic services to children who may always be dependent it should be no surprise that the educational system should reject the medical model for which they see themselves as wholly unsuited. Nor should it be a surprise there is resistance to it.

Simply put, 99% of medical professionals would be unsuited to provide care for complex children.

We are naive to believe competency exists in either our educational or medical models where knowledge of  24/7 maintenance of complex individuals is required. But we are not naive to believe we can bring competency to these models.

EDITORS NOTE
As parents and caregivers we are the foremost stewards of our children’s lives. We should take note that the science which our clinicians  represent often embrace the same cultural values of the population at large. It is time for us to shine our light upon the disparities and inequalities in science and clinical practice. We must critique professional work, giving credit and criticism where it is earned.

We will introduce professional literature here unfiltered. Abstracts at the beginning and Discussion or Conclusions at the end hold the keys to their essence.

IMPLICIT MEASURES OF RECEPTIVE COMMUNICATION

CONCLUSIONS
We demonstrated that EMs, PD, and ERPs can provide implicit estimates of receptive vocabulary knowledge in individuals with Level 3 autism, although the participants differed in their individual sensitivity to specific measures, and some measures proved more able than others in discriminating ‘known’ and ‘unknown’ vocabulary between participants. This variability highlights the importance of tailoring these assessments to each individual. Despite the inevitable heterogeneity of our limited number of participants, this work is one of the few studies to use sophisticated neuropsychological methodologies, such as EEG and eye tracking, to examine language processing in individuals with Level 3 autism, thereby offering a rare insight into this population.

 

Poppy has taken to talking to me about some serious things lately. Some are light and make me smile. He told me about the time my Mommy asked him if he would take care of her baby after she went back to work. He said yes and then realized it would be full-time. Ops!  Well, he got a bigger oops! when I came along!

But last week there came a day when it got real serious. You see, I have taught him a lot in my 14 years and even more in the last year as he does my homeschooling. We make a good pair and he, for an old duffer, has learned all the ins  and outs of school even the therapies. [Read more…]

It was a cold winter evening in January  of 2011. I was at Boston Children’s Hospital where my granddaughter Emily was being treated for the loss of 98% of her small intestines, along with 75% of her large. Only two months old, she has spent most of her two months in the hospital.

She will be here a few more weeks and will be discharged with a permanent IV line, a tummy tube and an ostomy bag. I am here with her father for three or four weeks as Mom is hospitalized back home in Albany,NY

It was a fairly routine day for Emily, some x-rays to check the positioning of the IV (PIC) line.  Within a week she will have surgery for a g-tube and they will work on monitoring her nutrition.

When I left the hospital this night to walk Longwood to Brookline and the Yawkey House, I got the yen for a cold one. I stopped at the Longwood Inn which is next to the hospital. As you might imagine, at any given time it is filled with families of the hospitalized, hospital employees, vendors and consultants working at the hospital. Last night was no different.

The bartender asked if I wanted a menu and a woman seated nearby commented that the food was absolutely great. I had already eaten but it was nice to know that a good place was so close. As all things in the Longwood Area are child health related, you are never more than a foot or two from people who share the pain of catastrophic children’s disease.

The woman was a mother of four and she had been here a week with a daughter with an extremely rare disorder. The disorder was known to be confined to one organ. Her daughter’s illness was not so confined and raging throughout the child’s body, destroying many organs. It mystified the best MD’s in the world till now and  she was eternally grateful to the staff at BCH for embracing her daughter and herself; as fear of the unknown had driven previous practitioners to run the other way. Needless to say this had been a long road for her and her daughter, in and out of many hospitals with many misdiagnoses. We talked a while swapping family medical stories. Despite the adversity she faced she had many questions about my granddaughter’s risks and had questions about my other granddaughter who had a severe neuro degenerative disorder.

Parents of children with rare and complex disorders have a unique bond. We too often face problems that shouldn’t be: the loss of the perfect child and the prospect of a much too early death.

Toward the end of our chat she looked directly at me and said: tell me about your fears for your granddaughter’s  future. I realized immediately that this question was an act of love of a mother willing to address the death of her child in the most unguarded and vulnerable manner conceivable  I summarized, as best I could, the grave mortal risk that Emily faced over her first few years. I asked her about the future she saw for her daughter. She looked directly at me and said, “It may not be long before I take my daughter home for a service and then I will take up raising my other three children”.

I walked slowly home with a lump in my throat. I woke up around three and I could still see her face clearly. Her eyes were filled with tears; her face was strong and determined. Her name was Bridget.