National Barrier Awareness Day

National Barrier Awareness Day brings awareness to dissolving stigma’s that keep people with disabilities from advancing in education, barriers in physical access, bridging technology gaps and any type of barriers that prevent people with disabilities to reach their full potential. While there have been many achievements, financial, cultural education and physical barriers still exist.

The History of National Barrier Awareness Day

On May 7 1986, President Ronald Reagan signed Proclamation 5472 as National Barrier Awareness Day.  President Reagan stated that “Eighty percent of Americans will experience some disability in their lifetime that makes it necessary they must surmount and the contributions that they can make to our society.”

Ways to Remove Barriers

While there are still physical barriers that exists, there is very few information on the mental barriers, meaning people that still hold misconceptions, stereotypes and myths regarding individuals with disabilities. what do I mean by mental barriers?

  1. people that are unaware that most disabilities are invisible. Someone parking in a handicapped space might not have a physical disabilities, but could suffer from a debilitating pain. There are also people with cognitive disabilities including, AutismADHD, and Dyslexia.
  2. As professionals, myths, and misconceptions continue when we as professionals stop learning and growing. Disabilities change overtime and as professionals and educators it is important to always learn and grow. For examples, very little was known about autism 25 years ago and more so when it comes to co-occurring disorders such as sensory processing disorder (SPD) and Dysgraphia.
  3. It is time to see the abilities not the disabilities in the person. By focusing on the disabilities, we limit the growth and development which leads to self-confidence to those with disabilities.

Finally, we all have to take the role of advocates. It comes as part of the job. Sometimes it is advocating for both parent and child and using our voice to help others live quality lives.

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Don’t leave employees with dyspraxia out in the cold

Published by: Real Business Company
Written by: Annie May Noonan

he fact that a dyspraxia sufferer isn’t easy to define makes the job of being understood and supported difficult for those with the condition – and I would know.

I was diagnosed with dyspraxia and dyscalculia at the age of eight after my physical balance and concentration levels suddenly, and very rapidly, deteriorated.

From the outside, I made the transition from my junior to ‘senior’ school as an atypical student, able to play sport and complete both writing tasks and times-tables well. My inability to dress or pack my school bag myself didn’t seem like a big issue until I suddenly could no longer retain my balance and started walking into doors, and falling down flights of stairs. I also developed problems writing and was unable to sit on a chair properly.

After my dual diagnosis, my frustrations around the difficulties I was experiencing lessened. I felt a sense of calm and clarity in the fact I had a condition, and could now learn strategies to make living with it less stressful. After seeing an occupational therapist for a year, I was able to manage my condition, however, my dyspraxia hasn’t gone away. Click here to read the rest of the story/

2020 Disability Awareness Month and Observance Calendar

 

The calendar includes major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets.  This page focus is on awareness activities that impact people with intellectual and developmental disabilities only.

January

January (Month)

National Birth  Defects Month

January (Week)

January 19-25- Special Education Week

January (Day)

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

February

February (Month)

Turner Syndrome Awareness Month

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

March

March (Month)

Brain Injury Awareness Month

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

National Early Intervention Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March (Day)

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 3- World Hearing Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April (Day)

April 1- Paraprofessional Appreciation Day

April 2- World Autism Awareness Day 

May

May (Month)

Better Hearing and Speech Month

Early Intervention Awareness Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Syndrome Awareness Month

Williams Syndrome Awareness Month

May (Day)

May 1- Global Developmental Delay Day

May (Week)

May 4-6 Children Mental Health Awareness Week

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

June

June (Month)

Aphasia Awareness Month

June (Week)

Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

Scoliosis Awareness Month

June (Day)

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July (Day)

July 14- Disability Pride Parade (NY)

July 14- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disabilities Act Day (30 Year Anniversary) 

September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September (Week)

September 13-19- Direct Support Professional Week

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

October (Month)

ADHD Awareness Month

Disability History Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October (Day)

October 5- World Teacher’s Day

October 6- World Cerebral Palsy Day

October 10- National Depression Screening Day

October 15- White Cane Awareness Day

October (Week)

October 4-10- Mental Illness Awareness Week 

October 13-19 Invisible Disabilities Week

October 13-19 International OCD Awareness Week

October 19-23- National School Bus Safety Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

November (Month)

22q Awareness Month

Epilepsy Awareness Month

November (Day)

November 1- LGS Awareness Day

November 4- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

December

December (Day)

December 2- National Special Education Day

December 3- International Day of Persons with Disabilities

December (Week)

December 1-7- Infantile Spasm

What is Prader Willi Syndrome?

May is Prader Willi Syndrome Awareness Month

Click here to download PDF version

What Exactly is Prader Willi Syndrome?

Prader Will Syndrome is a genetic disorder resulting from an abnormality of chromosome 15 such as a loss of active genes. In most cases (70%) the paternal copy is missing and in some cases (25%), will exhibit two maternal copies of Chromosome 15. The genetic disorder was initially described by John Langdon Down and was named after Drs. Andrea Prader, Heimrich Willi and Alexis Labhart in 1956 and is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

During childhood, individuals diagnosed with Prader-Willi Syndrome tend to eat constantly leading to obesity and for some, type 2 diabetes will develop. This complex disorder affects appetite,growth, metabolism, cognitive functioning and behavior.

Signs and Symptoms

People with Prader-Willi Syndrome (PWS) tend to never feel full (hyperphagia) which leads to constant eating. Signs in infants include, problems with strength, coordination and balance. Often there are feeding problems at birth, delayed speech and gross motor development. Children may be born with almond-shaped eyes and undeveloped sexual organs. Cognitive disabilities and developmental delays may also be present.

As children began to grow, constant craving for food often leads to behavior challenges including hoarding food, eating frozen food and food left in the garbage causing controlling or manipulative behavior.

Medical Issues

Medical concerns may include the following:

  • Sleep Apnea
  • Respiratory/Breathing
  • High pain tolerance
  • Severe stomach illness
  • Difficulty with vomiting reflex
  • Excessive appetite
  • Binge eating
  • Eye problems
  • Choking
  • Hypothermia
  • Leg Swelling
  • Consuming unsafe items
  • Negative reactions to medications
Teaching Strategies

Most people diagnosed with Prader Willi Syndrome fall between the moderate and mild levels of an intellectual disability meaning there may be challenges in the area of reasoning, problem-solving, planning, judgment, abstract thinking and learning.  A child or student functioning at the moderate level may lag behind their peers in the area of language and pre-academic skills. Adults may function at an elementary school level and will require support in both work and daily living skills. For children and students functioning at the mild level, there may be difficulties in the area of reading, writing, math and money management. as children grow into adults, there may be a need for support in abstract thinking, executive functioning (planning, prioritizing and flexibility) as well as short-term memory and money management.  Teaching strategies should focus on the following:

  • Aggression management
  • Anger management skills
  • Anxiety management
  • Emotional regulation
  • Personal safety
  • Social skills

Keep in mind that many children and adults diagnosed with Prader-Willi Syndrome may have additional challenges in learning due to medication. Some people take medication such as a growth hormone therapy which can cause fatigue.  The following teaching strategies may also be useful when teaching a student diagnosed with Prader Willi Syndrome:

  • Use a multi-sensory approach. This involves a teaching style that includes auditory, visual, tactile, spatial, and kinesthetic (hands on activities)
  • Break learning into small steps. Check for understanding by asking the student to repeat back to you.
  • Teach a skill at least 2-3 times a day. This will help the student retain information.
  • Managing perseveration. Set up a rule where the student can a question no more than 3 times. After the third answer. Ask the student to repeat the response back to you.
Adult Day Program/Residential Setting

Most people with Prader Willi Syndrome due to their cognitive level, will be provided services in either a day habilitation program or live in a community providing residential services. Once a person becomes an adult, it becomes a little bit more tricky on maintaining issues especially behavioral. For instance, while living at home, a parent has the right to lock the refrigerator which is often suggested by experts. However, this becomes a violations of a person’s rights once they reach adulthood. Typically, committees meet to help make the right decisions along with family members and the adult diagnosed with Prader Willi Syndrome. Here are some suggestions.

  • Allow the person to have control of what is important to them. Have discussions on nutrition and staying healthy. Check to see if this may be an appropriate topic the person may want to improve by adding to their person-centered plan. Hold discussion groups in both day programs as well as in residential to discuss various topics on health and nutrition including holding classes on mindfulness and meditation.
  • Trips to shopping malls can be very tricky. Try to avoid mall’s eatery and plan if it is a group trip to have people bring their own lunches.
  • When teaching, allow time before giving additional prompts
  • Give praise as much as you can when it is appropriate.
  • Use visuals as much as you can including graphics and pictures.
Staff Training

Staff training on Prader-Willi Syndrome should include the following topics:

  • Overview of Prader-Willi Syndrome including, causes, symptoms, characteristics, nutrition, and self-regulation.
  • Impact on the family including the stresses families experience.
  • Teaching techniques including problem-solving, forward shaping and role-modeling.
  • Individual rights
  • Managing behavior and crisis intervention
  • Community inclusion trips and activities
Resources

Foundation for Prader-Willi Research

Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome (Mayo Clinic)

Reference

Prader-Willi Syndrome Association

 

October is National Disability Employment Awareness Month

national disability monthNational Disability Employment Awareness is recognized each October to highlight the workforce contributions of people with disabilities.

Facts:

  • Only 20 percent of the labor force with disabilities are employed.
  • 59% of the people with hearing impairments were employed.
  • 41% of people with visual disabilities were employed.

16% of people with severe disabilities work full-time.

Check out this infographic!

disability employemnt

What can you do in your organization to recognize National Disability Employment Awareness Month?

Train frontline staff on the facts

Reach out to local media

Proactively recruit people with disabilities

Review company policies and procedures

Conduct training for supervisors on understanding their role in fostering an inclusive workplace culture

Participate in a disability mentoring day

Conduct a training on disability history.