Some of the most severely developmentally disabled people have medical needs that go beyond what most community settings and group homes can provide and may only be adequately met in Intermediate Care Facilities for people with intellectual and developmental disabilities. But what is the cost of not meeting those needs through the availability of competent nursing services?
Here is a clue from an article in the New York Times, "Where are the Nurses?" by Paula Span, 8/13/14. It looks at the effects of too few registered nurses in nursing homes:
"The 1987 federal law intended to reform the country’s nursing homes required a registered nurse on-site only eight hours a day, regardless of the size of the facility. Supporters at the time understood that in a building full of sick and disabled elders, health crises could occur at any hour. But getting the legislation passed required substantial compromises, including in regulations allowing reduced nurse staffing.
"'It’s something advocates have wanted to return to ever since,' said Robyn Grant, director of public policy and advocacy for the National Consumer Voice for Quality Long-Term Care. 'I think most people will be both shocked and appalled that there’s not an R.N. on duty around the clock.'"
Representative Jan Schakowsky, Democrat of Illinois, wants to fix this through proposed legislation, HB 5373:
"Adding registered nurses will hardly solve all the quality problems at nursing homes, which need more staff of other varieties, too. But it’s important unfinished business.
"'Otherwise, we probably should refer to these facilities as something besides nursing homes: 'pre-hospitalization holding facilities,' perhaps, or 'well-intended residences for the incurably underattended to.' You can probably come up with a few even-less-flattering names yourselves.'"
Studies cited in the article support the idea that providing adequate nursing care in nursing facilities will save money in the long term:
"Studies have repeatedly pointed to the importance of registered nurses. With higher registered-nurse staffing, patients have fewer pressure ulcers (aka bedsores) and urinary tract infections and catheterizations. They stay out of hospitals longer. Their homes get fewer serious deficiencies from state inspectors. Their care improves, but it costs less."
Perhaps we could learn something from this for people with DD.
In an opinion piece in The New York Times, 8/25/12, called "An Immune Disorder at the Root of Autism", the author Moises Beasquez-Manoff discusses research that shows that perhaps one-third of cases of autism are caused by immune dysregulation related to the mother's response to inflammation during pregnancy. Results of a study in Denmark, for instance, indicate that viral infections in the mother during pregnancy increases the chances of having an autistic child by 30% and bacterial infections by 40%.
Infection is unlikely to have caused the increased incidence in cases of autism directly, because we are "more infection free than any other time in history". Instead, the increase parallels other epidemics like asthma and other autoimmune diseases. Autism seems linked to the autoimmune diseases of the mother:
"…One large Danish study, which included nearly 700,000 births over a decade, found that a mother’s rheumatoid arthritis, a degenerative disease of the joints, elevated a child’s risk of autism by 80 percent. Her celiac disease, an inflammatory disease prompted by proteins in wheat and other grains, increased it 350 percent. Genetic studies tell a similar tale. Gene variants associated with autoimmune disease — genes of the immune system — also increase the risk of autism, especially when they occur in the mother."
Theories to explain the increase in autoimmune diseases include the hygiene hypothesis — that we suffer from "microbial deprivation" and that in cultures with more exposure to microbes and parasites there are fewer autoimmune diseases. Animal studies also support some of the theories proposed in this article.
These studies provide a "therapeutic target" for treatment of autism and further research.
By the time Danny was five years old, it was pretty clear to my husband and I that we were going to be in the disabilities game for a long time. In the early years, I read and heard about many purported cures and treatments that promised to make our boy "snap out of it" and get on with his life as a normal person. There were always caveats, however. If the treatments and therapies did not have the desired effect, it was probably because the parents weren't doing it right or they weren't sufficiently committed to the idea to make it work. Because Danny's care was so exhausting, it was a relief to me when the latest fad proved to be without merit before I had a chance or inclination to try it out. After a while, the fads that I might have fallen for earlier began to seem absolutely bonkers.
At a United Cerebral Palsy conference, I sat through a presentation about how you can improve your child's emotional health and behavior by painting his room the correct color to match his condition. "The spinal cord is a rainbow!" said the man who was presumably paid to present this drivel. As I recall, he had charts and diagrams showing how the color of the room somehow worked its way through the eyes and brain to the spinal cord with miraculous effect. I later referred to this method as Cure by Interior Decoration.
Then there was patterning that promised that after a mere 8 or 9 hours per day of taking Danny through rigorous movement exercises, new pathways would be forged in his damaged brain, allowing him to progress. Swimming with dolphins, said Parade Magazine, improved the speech of Down Syndrome children by 20% (20% of what, it did not say). Behavior modification could produce improvement of inappropriate or sometimes just annoying behaviors through positive and negative reinforcement to encourage the child to behave. In case that didn't work, aversive behavior interventions were available to threaten, intimidate, and physically force the child to do what you wanted.
In an odd twist, advocates of Neurodiversity oppose spending money on research to find cures for autism and related disabilities. They believe that people with these conditions represent diversity on the broad spectrum of human behavior and thought. Since there is nothing wrong with them, they don't need to be cured. They especially oppose research on genetic causes of autism that might lead to their eugenic elimination. I wonder how many people with these "differences" take medication to reduce symptoms such as anxiety, depression, and obsessive compulsive disorder? Are they being true to their beliefs when they refuse to accept "differences" that can be conveniently treated with medication? Is it cheating for a person with seizures to take anti-seizure medication or a diabetic to take insulin? The Neurodiversity idea raises more questions that it answers.
Once in a while a really kooky idea comes along that actually works. The Ketogenic Diet, for instance, is a high-fat, low-carbohydrate diet that reduces or eliminates seizures in some kids. Recommending the diet doesn't take a lot of high-pressure salesmanship on the part of doctors who are willing to monitor kids on this diet, because the results speak for themselves. That this is a difficult diet to maintain and hard on families is acknowledged upfront and the parents ultimately decide whether it is worth a try to stop intractable seizures in their children.
Recently, the New York Times published an article, Promise Seen in Drug for Retardation Syndrome, 4/29/2010, that describes hope for a medical treatment for some symptoms of Fragile X Syndrome. Fragile X is "the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. ... FXS is the most common known cause of autism or 'autistic-like' behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development". (This is according to the National Fragile X Foundation Web site.)
Research on Fragile X is done by real scientists (rather than interior decorators and dolphin trainers) who work to improve understanding of the genetic causes of the syndrome in hopes of finding a way to lessen its symptoms and perhaps point the way to treating other related conditions. Here are the fascinating details from the article on how Fragile X Syndrome works, in case you're interested:
"Fragile X is caused by a genetic stutter in which a portion of the gene gets repeated like a scratched album. With each subsequent generation, the number of repeats tends to rise. So if a mother has 10 repeats, her child might have 11 or 12. For reasons that are not well understood, however, this process of repeat amplification can suddenly go haywire. So mothers who have 55 or more repeats tend to have children with hundreds.
"In anyone with 200 or more repeats, the body shuts off the gene. Since genes are used to make proteins, this genetic silencing means the encoded protein is never made. The absence of this protein in cells causes the wide-ranging effects of fragile X syndrome. Those with 55 to 200 repeats are considered carriers, and recent research shows they can have severe neurological declines late in life that mimic Alzheimer’s and Parkinson’s."
Getting back to the new discovery that the article features, scientists have found that fragile X patients have an "overload of unchecked synaptic noise" (the synapses are the junctions between brain neurons). The new drug produced by the drug company Novartis appears to reduce the noise by replacing at least one missing protein so that "memory formation and high-level thinking can take place allowing children to develop normally."
Wow! The president of the Fraxa Research Foundation that finances fragile X research says "this may be the key to solving the mystery of autism and other developmental disorders." A spokesperson from Autism Speaks says pretty much the same thing. A former researcher at another big drug company Merck says this is "the most promising therapeutic discovery ever for a gene-based behavioral disease." The best news is that if you are a mouse, a fish, or a fruit fly that has been genetically engineered to have fragile X, you will be rendered practically normal if you take a compound including the missing fragile X protein.
Is this too good to be true? Probably. If you read the article carefully you find out that the trial for the drug involved only a few dozen patients with fragile X and only some of those benefited. The study was too brief to measure effects on basic intelligence. Improvement was seen in an "undisclosed biological trait". A total of two parents were euphoric with the results of the trial. The Novartis results were not published or peer reviewed (this means they were not refereed by other experts in the field, including competitors, for publication). For commercial reasons, many details were not divulged. The drug is years from being available if it even survives more rigorous trials and further study.
The article includes many fascinating details of fragile X syndrome and how research has progressed over the years, but the drug companies and the groups that raise money for fragile X and autism research will probably benefit the most from the publicity. Parents are prone to euphoria when they hear of a solution to a difficult and sometimes desperate situation with their child, and who can blame them. Hope is never a bad thing, but exploitation of that hope for publicity and fundraising makes me queasy.
Buyer beware! You might want to investigate Web sites like Quackwatch before investing money, time, and energy in alluring cures and treatments that aren't all they pretend to be.
This is a request for participants from the University of Michigan Adapted Cognitive Assessment Laboratory in a study of thinking speed in children with cerebral palsy:
The Adapted Cognitive Assessment Lab (ACAL) at the University of Michigan is actively recruiting students to participate in a Thinking Speed Study. Students must be:
- Between the ages of 8 and 16 years of age.
- Have a medical diagnosis of Cerebral Palsy.
- Have a parent/guardian present to provide written and informed approval for their child to participate in the study.
- Have no medical or psychiatric condition that affects the tests, including changing doses of medication or a history of brain injury
Participants can expect to spend two to three hours in the study, and will be paid a $50.00 honorarium for their time and effort.
This study is funded by the National Institutes of Health and the U.S. Department of Education and is approved by the University of Michigan’s Institutional Review Board (HUM00014311).
Standardized testing requires a child to speak, write, or point to answers. This study is designed to separate physical capability from measurement of thinking capability. The ACAL investigators conduct these tests through a computerized program that uses Visual Inspection Time and Assistive Technology. Visual Inspection time is measured by the amount of time a person needs to look at something before they can correctly make a simple judgment about what he/she just saw – slow movement does not mean slow thinking.
To learn more about how your child can participate in the Thinking Speed Study e-mail ACAL-Research@umich.edu or call 734-936-6604 or 734-763-6189.
If you are interested in Cerebral Palsy research and Adapted Cognitive Assessment Laboratory studies you may also enroll your child with the University of Michigan’s engage Registry here. Physical Medicine and Rehabilitation
Adapted Cognitive Assessment Lab
325 E. Eisenhower, Suite 100
Ann Arbor, MI 48108
734-936-6023
