December 3, International Day of Persons with Disabilities

The International Day for Persons with Disabilities 

From United Nations Enable
"Persons with disabilities make up an estimated 15 percent of the world’s population. Almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. Furthermore, a quarter of the global population is directly affected by disability, as caregivers or family members. 

U N I T E D   N A T I O N S

2024 International Day of Persons with Disabilities (IDPD)

Since 1992, the United Nations International Day of Persons with Disabilities (IDPD) has been observed annually on 3 December worldwide. This year's theme is "Amplifying the leadership of persons with disabilities for an inclusive and sustainable future." This theme recognizes the vital role that persons with disabilities play in creating a more inclusive and sustainable world for all. It also emphasizes the importance of their participation in decision-making processes that affect their lives.

This year's theme reflects the current international political and policy context, in particular the Pact for the Future and the upcoming 2025 World Summit for Social Development, and the need to create momentum for achieving the 2030 Agenda. The theme seeks to amplify the centrality of the leadership role of persons with disabilities in all of these efforts—from the global to the local.

The UN calls on domestic and international public health officials, political representatives, advocates, supporters, and every citizen in every community to learn from the experiences of people living with disabilities and push for more meaningful investments into the socioeconomic building blocks that will reduce the barriers faced by people with disabilities in every community on earth.

Assistive technology to facilitate

independent eating and drinking

The first video describes the feeding challenges of persons with disabilities and the advances in assistive technology. It does not endorse the Mealtime Partner Dining System, but the video shows good examples of challenging eating/feeding situations. 

Quadriplegic Eating Utensils

Resource.

United Nations Enable, International Day of Persons with Disabilities

Cerebral Palsy Awareness Month The Challenges of Feeding

Meet My Son, Jake

Written by Tracy S. Williams, BS, Nutrition Educator. 

Learn more about Tracy at Tracy's Plate

World Cerebral Palsy Day

Cerebral palsy (CP) is a broad term used to describe a group of chronic “palsies”- disorders that impair movement due to damage of the developing brain. CP usually develops by age 2 or 3 and is a non-progressive brain disorder, meaning the brain damage does not continue to worsen throughout life. However, the symptoms damage often changes over time- sometimes getting better and sometimes getting worse. CP is one of the most common causes of childhood disability.

About 10,000 infants are diagnosed with CP and up to 1,500 preschoolers in the U.S. are recognized as having CP each year. The United Cerebral Palsy Association estimates that more than 764,000 Americans have CP. Congenital cerebral palsy caused by a brain injury during a baby’s development in the womb is responsible in about 70% of the children who have the condition. It is present at birth, although it may not be detected for months. An additional 20% have congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown, however, some possible causes are:

An infection during pregnancy may damage a fetus’s developing nervous system. They include rubella (German measles), cytomegalovirus (a herpes-type virus), and toxoplasmosis (an infection caused by a parasite that can be carried in cat feces or inadequately cooked meat). Other undetected infections in pregnant women are being recognized as an important cause of developmental brain damage in the fetus.

· Severe jaundice in the infant. Jaundice is caused by excessive bilirubin in the blood. Normally, bilirubin is filtered out by the liver. Often, newborns’ livers need a few days to start doing this effectively, so it’s not uncommon for infants to have jaundice for a few days after birth. In most cases, light therapy clears up jaundice and there are no lasting health effects. In rare cases, severe cases of jaundice can damage brain cells.

· Rh incompatibility between mother and infant can be a cause of cerebral palsy. In this blood condition, the mother’s body produces antibodies that destroy the fetus’s blood cells. This leads to jaundice may cause brain damage in the newborn.

· The physical or metabolic trauma of birth can be a cause of cerebral palsy. This can produce brain damage in a fetus whose health has been threatened during development. Severe oxygen deprivation to the brain or significant trauma to the head during labor and delivery can be the cause of cerebral palsy.

Feeding Skills

Feeding skills have been cited as a contributing factor that can affect the life expectancy of those with CP. Managing these can positively affect the life span of an individual with cerebral palsy. When people with cerebral palsy have feeding and digestive challenges, a nutrition care program can be beneficial. Skilled registered dietitian nutritionists work with physicians to adjust diet, food intake and nutrition supplements to enhance overall health. Effective dietary therapy can be devised to meet the individual’s unique needs taking into account digestive challenges and the ability to properly chew, swallow, and self-feed.

Nutrition practitioners can adjust the textures and consistency of food by pureeing, chopping, and grinding foods for a smoother eating experience. Foods can be softened with broth, gravy, milk, or juices. Liquids can be thickened to improve swallowing. Self-feeding is a skill that significantly enhances the quality of life for someone with a disability, although caregivers, family or friends may still be needed. Speech therapists can teach patients, their friends, or caregivers about adaptive feeding tools that can accommodate different levels of ability. Appropriate techniques can include space between feedings, to allow for natural swallowing, or feeding smaller portions throughout the day. In the most severe cases, some people with cerebral palsy rely on a feeding tube for partial or total nutrition intake. It is important to adjust to allow sufficient time between bites and drinks for natural swallowing. Some meals should be scheduled around medication times to avoid stomach upset, curb appetites and address feelings of being tired.

If a person with cerebral palsy has trouble with asphyxiation, reflux, or pneumonia, he or she should avoid foods, such as nuts, seeds, and hard or stringy foods. Diets can be changed to provide more calories, better balance, compensate for deficiencies and enhance digestion. Vitamin, minerals, and food supplements may help with malabsorption or who tire when eating. High fiber choices can curb constipation while prune and apricot juices may provide natural laxative qualities. Some people with cerebral palsy need to control drooling and aspiration, in addition, use long-term anti-seizure medications can contribute to an increased risk of tooth decay, cavities, gum disease, and bacterial infections. Dietitians may advise substituting added sugars and carbonated drinks with fresh fruits and vegetables. Dentists will encourage proper dental hygiene like regular brushing, drinking fluorinated water and regular checkups

Many people fight stereotypes and those with disabilities are no exception. Barriers individuals with disabilities face begin with people’s attitudes that are often rooted in misinformation and misunderstandings of what it’s like to live with a disability. One misconception is that all people living with disabilities are brave and courageous, but people with disabilities just need to adapt to a currently different lifestyle. Sometimes wheelchairs are used as typical mobility devices rather than for people who are only ill or sickly. In past decades, segregating people with disabilities in separate schools and institutions reinforced the perception that people with disabilities could only interact with others who have disabilities. Any person who does not have a disability can offer assistance, but most people with disabilities prefer to take responsibility for their own care when physically possible both in the community, within all parts of society. It is okay for curious children to ask questions about disability. Discouraging curious children from asking questions teaches children that having a difference or disability is wrong or bad. Many people with a disability will not mind answering a child’s question. People with disabilities go to school, get married, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, plan and dream about their future like everyone else. It is important to encourage participation from people with disabilities by providing accessible meetings and event sites. It is important for advocates to speak up when negative words or phrases are used for people with a variety of disabilities.

Cerebral palsy can affect someone who has it in a variety of ways. Some people with cerebral palsy can be impacted by having limited verbal ability, limited cognitive ability, all four limbs affected or just their legs impacted. Some people use one cane or crutch; some people use a walker or two crutches. Some people use a manual wheelchair or motorized wheelchair. Some people may have some nutritional issues due to some difficulty feeding themselves or having digestive issues. You may have met one classmate, colleague or friend with cerebral palsy, but that does not mean even everyone is impacted in the same way by the same diagnosis. All people with disabilities deserve the same level of respect and it is important to help those with disabilities advocate against social misconceptions.

Resources
1.  CP NOW nonprofit & CP Daily Living

2. United Cerebral Palsy

March 21, World Down Syndrome Day Healthy Eating Habits

World Down Syndrome Day (WDSD), 21 March, is a global awareness day which has been officially observed by the United Nations since 2012.

The date for WDSD being the 21st day of the 3rd month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

Down Syndrome International encourages people all over the World to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

People with Down syndrome, on an equal basis with other people, must be able to enjoy full and equal rights, both as children and adults with ‘opportunities’ and ‘choices’.

People with Down syndrome face many challenges as children and adults which may prevent them from enjoying their basic human rights. Many people often fail to understand that people with Down syndrome are people first, who may require additional support, but should be recognized by society on an equal basis with others, without discrimination on the basis of disability. 

Families have a deep personal interest in the well-being of their members with Down syndrome. Empowering families to promote the equal status of their members in society and development is crucial so that they can provide support, advocate for opportunities and choices and empower people with Down syndrome to express their own views and make their own decisions, as well as advocate for themselves.

Joan Guthrie Medlen, M.Ed, RD 

Down Syndrome Nutrition: Top Tips

Joan E. Guthrie Medlen, a mother of a child with Down syndrome, a registered dietitian, and the author of “The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles,” encourages parents to start teaching healthy habits early but stresses that it's never too late to start, no matter what age.

Joan became involved in issues related to people with Down syndrome after the birth of her son. “As we all know, parents of kids with disabilities are involved in the big picture immediately – like it or not! I chose to work in the field of nutrition/health promotion for people with Down syndrome over 16 years ago. It’s a choice I've not regretted.”

Introducing Cooking By Color: 
Recipes for Independence
by Joan E. Guthrie Medlen, RD

Nutrition Notes. 

Down Syndrome: Helping Your Child Eat Independently, WebMD.

Down syndrome often affects the muscles in the mouth, causing the tongue to stick out. This may interfere with feeding, including breastfeeding, bottle-feeding, and eating solid food. Most children overcome these types of problems, although they will likely master eating skills at a later age than other children.

Healthy Eating Habits in Children with Down Syndrome, National Down Syndrome Society

The following are some specific strategies you might want to try:

• Explore new foods together. Go to the store and find something totally new in the produce section, or try a new shape of pasta.
• Once a month, choose a new recipe with your child that you prepare together. Plan for a mess, and enjoy the time you spend together learning new things and developing new skills.
• Always build in choices. When your child is young, for example, the development of “healthy habits” centers on learning to communicate and choose. So be sure to provide visual representations of food, such as photos and wrappers, or teach sign language for various foods.
• Involve your child in menu planning at an early age. Even if you don’t plan more than 30 minutes in advance, be sure to give your child the opportunity to choose one item on the menu or between different snack options.

HAPPY World Down Syndrome Day, Pharrell Williams

Meet a family who shares their

the amazing story of love and living.

 

Visit the following link to learn more about
World Down Syndrome Day.

World Cerebral Palsy Day - Feeding Challenges

Meet my son, Jake.

Written by Tracy S. Williams, BS, Nutrition Educator. 

Learn more about Tracy at Tracy's Plate

World Cerebral Palsy Day

Cerebral palsy (CP) is a broad term used to describe a group of chronic “palsies”- disorders that impair movement due to damage of the developing brain. CP usually develops by age 2 or 3 and is a non-progressive brain disorder, meaning the brain damage does not continue to worsen throughout life. However, the symptoms damage often changes over time- sometimes getting better and sometimes getting worse. CP is one of the most common causes of childhood disability.

About 10,000 infants are diagnosed with CP and up to 1,500 preschoolers in the U.S. are recognized as having CP each year. The United Cerebral Palsy Association estimates that more than 764,000 Americans have CP. Congenital cerebral palsy caused by a brain injury during a baby’s development in the womb is responsible in about 70% of the children who have the condition. It is present at birth, although it may not be detected for months. An additional 20% have congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown, however, some possible causes are:

An infection during pregnancy may damage a fetus’s developing nervous system. They include rubella (German measles), cytomegalovirus (a herpes-type virus), and toxoplasmosis (an infection caused by a parasite that can be carried in cat feces or inadequately cooked meat). Other undetected infections in pregnant women are being recognized as an important cause of developmental brain damage in the fetus.

· Severe jaundice in the infant. Jaundice is caused by excessive bilirubin in the blood. Normally, bilirubin is filtered out by the liver. Often, newborns’ livers need a few days to start doing this effectively, so it’s not uncommon for infants to have jaundice for a few days after birth. In most cases, light therapy clears up jaundice and there are no lasting health effects. In rare cases, severe cases of jaundice can damage brain cells.

· Rh incompatibility between mother and infant can be a cause of cerebral palsy. In this blood condition, the mother’s body produces antibodies that destroy the fetus’s blood cells. This leads to jaundice may cause brain damage in the newborn.

· The physical or metabolic trauma of birth can be a cause of cerebral palsy. This can produce brain damage in a fetus whose health has been threatened during development. Severe oxygen deprivation to the brain or significant trauma to the head during labor and delivery can be the cause of cerebral palsy.

Feeding Skills

Feeding skills have been cited as a contributing factor that can affect the life expectancy of those with CP. Managing these can positively affect the life span of an individual with cerebral palsy. When people with cerebral palsy have feeding and digestive challenges, a nutrition care program can be beneficial. Skilled registered dietitian nutritionists work with physicians to adjust diet, food intake and nutrition supplements to enhance overall health. Effective dietary therapy can be devised to meet the individual’s unique needs taking into account digestive challenges and the ability to properly chew, swallow and self-feed.

Nutrition practitioners can adjust textures and consistency of food by pureeing, chopping, and grinding foods for a smoother eating experience. Foods can be softened with broth, gravy, milk, or juices. Liquids can be thickened to improve swallowing. Self-feeding is a skill that significantly enhances the quality of life for someone with a disability, although caregivers, family or friends may still be needed. Speech therapists can teach patients, their friends, or caregivers about adaptive feeding tools that can accommodate different levels of ability. Appropriate techniques can include space between feedings, to allow for natural swallowing, or feeding smaller portions throughout the day. In the most severe cases, some people with cerebral palsy rely on a feeding tube for partial or total nutrition intake. It is important to adjust to allow sufficient time between bites and drinks for natural swallowing. Some meals should be scheduled around medication times to avoid stomach upset, curb appetites and address feelings of being tired.

If a person with cerebral palsy has trouble with asphyxiation, reflux, or pneumonia, he or she should avoid foods, such as nuts, seeds, and hard or stringy foods. Diets can be changed to provide more calories, better balance, compensate for deficiencies and enhance digestion. Vitamin, minerals, and food supplements may help with malabsorption or who tire when eating. High fiber choices can curb constipation while prune and apricot juices may provide natural laxative qualities. Some people with cerebral palsy need to control drooling and aspiration, in addition, use long-term anti-seizure medications can contribute to an increased risk of tooth decay, cavities, gum disease, and bacterial infections. Dietitians may advise substituting added sugars and carbonated drinks with fresh fruits and vegetables. Dentists will encourage proper dental hygiene like regular brushing, drinking fluorinated water and regular checkups

Many people fight stereotypes and those with disabilities are no exception. Barriers individuals with disabilities face begin with people’s attitudes that are often rooted in misinformation and misunderstandings of what it’s like to live with a disability. One misconception is that all people living with disabilities are brave and courageous, but people with disabilities just need to adapt to a currently different lifestyle. Sometimes wheelchairs are used as typical mobility devices rather than for people who are only ill or sickly. In past decades, segregating people with disabilities in separate schools and institutions reinforced the perception that people with disabilities could only interact with others who have disabilities. Any person who does not have a disability can offer assistance, but most people with disabilities prefer to take responsibility for their own care when physically possible both in the community, within all parts of society. It is okay for curious children to ask questions about disability. Discouraging curious children from asking questions teaches children that having a difference or disability is wrong or bad. Many people with a disability will not mind answering a child’s question. People with disabilities go to school, get married, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, plan and dream about their future like everyone else. It is important to encourage participation from people with disabilities by providing accessible meeting and event sites. It is important for advocates to speak up when negative words or phrases are used for people with a variety of disabilities.

Cerebral palsy can affect someone who has it in a variety of ways. Some people with cerebral palsy can be impacted by having the limited verbal ability, limited cognitive ability, all four limbs affected or just their legs impacted. Some people use one cane or crutch; some people use a walker or two crutches. Some people use a manual wheelchair or motorized wheelchair. Some people may have some nutritional issues due to some difficulty feeding themselves or having digestive issues. You may have met one classmate, colleague or friend with cerebral palsy, but that does not mean even everyone is impacted in the same way by the same diagnosis. All people with disabilities deserve the same level of respect and it is important to help those with disabilities advocate against social misconceptions.

Resources
1.  CP NOW nonprofit & CP Daily Living

2. United Cerebral Palsy