Plain language information on COVID-19 Corona Virus. .
Please read and share with others.
COVID-19 Corona Virus. (pdf)
Plain language information on COVID-19 Corona Virus. .
Please read and share with others.
COVID-19 Corona Virus. (pdf)
Important information from the Center for Disease Control (CDC) about Coronavirus Disease 2019 (COVID-19). Please read and share with others.
Center for Disease Control (CDC) Symptoms of Coronavirus Disease 2019 (COVID-19)
Read this important information from the CDC about Coronavirus Disease 2019 (COVID-19). Please share with others.
Center for Disease Control (CDC) Stop the Spread of Germs
Please read and share this important information to ways to stop the spread of germs (pdf). Help prevent the spread of respiratory diseases like COVID-19.
*** Please also read the COVID-19 information on the CDC site
Please read and share these important fact sheets.
Printable fact sheets in English, Simplified Chinese and Spanish are available and include:
* Stop the Spread of Germs: Respiratory Diseases like Flu and COVID-19
* What you need to know about coronavirus disease 2019 (COVID-19)
* What to do if you are sick
I have been working with people with a disability for 10 years. I want to share what I think they should be good at. A person has to like working with other people and helping them. Support workers do a lot of work and they are great people. The name of the job might be different at different places, but you still do the same things.
This site has 13 traits of a support worker: https://personalsupportworkerhq.com/qualities-of-a-psw/
I am the parent of a child with a disability. She has a lot of medical needs too.
Kids who have a lot of medical needs can have a nurse in their home. MassHealth approves this service.
Parents have a hard time finding nurses. There are not enough nurses working in homes.
Nurses who work in homes make a lot less money than nurses in the hospital. This is a big problem.
The campaign started in April 2016 to help parents find nurses at home.
Nurses at home keep kids:
If you want to learn more, email firstname.lastname@example.org.
Autistic people should be treated fairly at the doctor’s office. As an autistic adult myself, I’ve been treated well by some doctors and badly by others. Here are some tips for doctors, nurses, and other medical workers who work with autistic adults.
In this blog, I would like to discuss briefly three main issues.
The smart phone has become an important tool for people. They help us talk to our families and have fun. The following are some ways smart phones can improve the health and lives of people with disabilities.
Tremor is an uncontrolled movement of the body. Some people call it “shaky hands”. Here are two types.
Other causes of tremor:
Smart phones have become a tool to transmit and store data from people with tremor. They are also used to learn about tremor and to see how good a treatment is.
Below are some free apps with brief explanations:
Touch screens on smart phones could be a challenge for people with tremor.
Below are some helpful solutions.
Change the sensitivity of the touchscreen. Find Accessibility Options in Settings. Now you can adjust such options as:
Review the options and play around with them to find what is best for your needs.
There are other free apps that would be useful as well. Also, many users with tremor prefer to use voice to text to overcome the challenges of tremor.
I encourage you to enjoy your smart phone, and not to let tremor hold you back.
Keeping healthy is important for everyone. People who have developmental disabilities need to do the same things to stay healthy as everybody else. This can be hard. Doctors and nurses do not always talk with people who have disabilities about staying healthy. Doctors and nurses can be very busy fixing health problems. Sometimes they forget to try to stop problems before they start.
Why is staying healthy so important?
Colon cancer is a type of sickness that is very common in people who have disabilities.
Colon cancer is very serious. It can:
There is some good news. There are a lot of things we can do so we do not get colon cancer. We can also get checked by a doctor or nurse to catch colon cancer in our bodies before it makes us sick.
First, let’s talk about preventing colon cancer. This means we will talk about the things we can do to keep from getting colon cancer.
Sometimes we can still get colon cancer even if we are healthy. There is good news, though. If colon cancer is found early, doctors can treat it before it has a chance to make us sick.
To catch colon cancer early, talk to your doctor! Tell the doctor that you would like to know more about getting checked for colon cancer. Usually you start getting checked for colon cancer once you are 50 years old. If someone in your family has had colon cancer, make sure to tell your doctor or nurse. They should talk with you about getting checked for colon cancer sooner.
There are a few different ways that you can get checked.
Maybe you have read all of this and you are thinking that keeping colon cancer away sounds like a lot of work. Or, maybe you are having a hard time deciding what to do first. The most important thing you can do is talk with your doctor! Tell the doctor that you would like to stay healthy and keep colon cancer away. Doctors and nurses love to help people stay healthy. Sometimes they just need a friendly reminder about checking for colon cancer!
For more information, visit:
The American Cancer Society
Colon Cancer Alliance
I am a patient advocate who works with people with medical problems and disabilities. When a doctor diagnoses a person with a disease, it can be sad and scary. But, once a problem has a name, people can learn more about it. They can talk or write to others with the same problem. They can join groups or clubs for their disability. They can visit doctors and hospitals with special knowledge of their problems.
Sadly, some people never get a name for their disease or disability.
These people visit many doctors and hospitals. No one knows what is wrong. There are no clubs or groups for their illness. Doctors do not know how to help them. These people may feel very alone. They may be confused as to why doctors can’t tell them what is wrong. They may wonder if they don’t have a real disease or a disability at all.
Not finding a diagnosis happens a lot.
Most people do not know that some diseases have no name yet. Science and medical care are getting better every year. Still, there are many things scientists and doctors do not know. Scientists and doctors do not know every disease a person can have. Why is it some diseases or disabilities have no name?
How a Disease Gets a Name:
In the past, doctors named diseases for the problems they caused in the human body. If five babies were born with problems moving their legs, the doctor would say all five had the same leg disease. The name of the disease came from its symptoms.
Looking at Human Genes:
Today, some doctors still use old disease names from symptoms. But more doctors today want to know the true cause of a disease. To find a disease’s true cause, doctors look at our genes. Genes are inside our bodies. They tell the parts of our body how to work. We are born with our genes. We keep the same genes our whole lives. Scientists know that a problem in our genes will often cause a disease.
Finding a gene problem is the best way to name a disease.
Today, if five babies are born with leg problems, the doctor will test a little of their blood to see their genes. Even though all five babies have leg problems, they may not have the same gene problems. The babies will get different names for their diseases, if they have different gene problems.
When we can’t find a gene problem:
Sometimes, doctors cannot find the gene problem causing a person’s disease. This happens because humans still have a lot to learn about genes. We don’t know how to find every gene problem in the body. We don’t know why some gene problems cause diseases, and some gene problems do not.
When we can’t find a sick person’s gene problem, their disease has no name. A person with a disease that has no name is called undiagnosed. Today, many people with diseases and disabilities are undiagnosed. These people and their doctors are waiting for new tests to find their gene problems. They are waiting for scientists to learn more about their diseases.
Living With No Diagnosis
For a person with a disease that has no name, life can be hard. Insurance companies may not want to pay for the person’s care. Doctors in special clinics may turn the person away, until their disease has a name. Groups for people with disabilities and diseases may not let the person join. Undiagnosed people may end up feeling alone as they live with their disease.
Having no diagnosis can feel lonely or scary.
But, even without a name for a disability, people can find help. A special group of doctors and scientists work for the US government to study diseases that have no name. They work at the National Institute of Health (NIH). The NIH has a page with tips for people who are undiagnosed.
These can be found at: https://rarediseases.info.nih.gov/guides/pages/24/tips-for-the-undiagnosed
Another pace for undiagnosed people is the organization SWAN. SWAN stands for Syndromes Without A Name. SWAN is a group for people who have no name for their disease or disability. They keep a website at: http://swanusa.org/
At the SWAN site people can share stories. People can find others who also have no name for their disease. They can find a place to be together and share their daily lives.
Working with each other, people with no name for their disease can find hope. They can work through their struggles, and support new medical research.
Sometimes bad behavior is a sign of a health issue. For many children with an intellectual disability (ID), the first sign of a health issue can be a change in behavior. Sometimes people think the ID is the reason for the behavior. And the health issue is missed.
Our Story: School Problems
I am the parent of a child with Down syndrome. In fourth grade, our daughter’s teachers told us she had been struggling with behavior issues every day. They said she was tired. And they said she couldn’t handle a full day of school. They said school was hard for her because she spent the day with peers who were not delayed. She had problems for weeks, but they didn’t tell us.
Testing Reveals Tummy Trouble
Around the same time, our daughter had a triple-scope of her GI system. The doctors wanted to know if she had celiac disease. (Celiac disease causes the body to get sick when a person eats wheat.) Instead, we found out that she had very bad reflux disease (GERD). The GERD made her belly and throat hurt a lot. Right away, she started medicine to reduce the amount of acid in her stomach. And we changed her diet to remove the food that hurt her tummy the most.
At our next meeting with the school, we talked about my daughter’s behavior problems again. The school said they saw a problem every afternoon around 1 PM.
Putting It Together
At the meeting, we shared the “home update.” Part of the update included the results of the tummy testing. We also talked about the changes to her diet that we were making at home. One of the teachers spoke up. “I guess we should stop letting her buy orange juice at lunch every day?” And there it was. We had our answer to the afternoon behavior problems. Orange juice can increase painful reflux, and probably made her tummy hurt every day.
Figuring Out Our Mistake
We had all attributed her behavior to her disability. Low energy? We figured it was due to Down syndrome. Feeling overwhelmed by the classwork, and the language demands of her peers? That was caused by her low IQ. The school was so certain that her behavior was related to her disability, and not a sign of something medical, that they let weeks elapse before bringing the problem to our attention. As her parents, we did not suspect a medical cause either. It was only luck and good timing that caused us to do the GI testing at that time, giving us the answer to a question we didn’t know we still had.
For people with intellectual disabilities, physical distress is often associated with changes in mood, mental status, and behavior, as a significant “setting event” (an event that increases the probability of occurrence of problem behaviors). (Gardner & Whalen, 1996;, Gunsett, Mulick, Fernald & Martin, 1989; Carr, Smith, Giacin, Whelan, & Pancari, 2003).
Despite the documented link between health concerns and problem behaviors, medical causes for agitated behavior may frequently be missed in people with ID because they are often poor reporters of their own health issues. (Charlot, Abend, Ravin, Mastis, Hunt & Deutsch, 2011)
When a change in behavior is observed, medical causes should be considered first. This is true of all children. It is especially true for children with ID. Children with ID are often less able to share that they are hurting somewhere. And research has demonstrated that behavior problems due to health issues are missed in people with ID. Their caretakers should first figure out if any behavior is related to a medical cause.
For more information about behavior issues that are not caused by health issues, the book Supporting Positive Behavior in Children and Teens with Down Syndrome contains a wealth of information. (David Stein, Psy.D., Woodbine House, 2016)
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