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Covid: Learning disability death rates ' six times higher'
November 13, 2020

https://www.bbc.com/news/health-54924121

This article sheds light on how people with mental disabilities are one of the most vulnerable groups in society suffered much during the first wave of Covid-19 pandemic. It gives examples of three persons with learning disability died because of Covid-19. All governments around the world should prioritize people with disabilities in its care plan as they are more likely to suffer seriously from the pandemic.

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By Ruth Clegg
Disability news producer

People with learning disabilities were up to six times more likely to die from Covid-19 during the first wave of the pandemic, analysis shows.

A report from Public Health England (PHE) found the death rate for those with a learning disability was 30 times higher in the 18-34 age group.

The charity Mencap said the government had "failed to protect" a group already experiencing health inequalities.

Social Care Minister Helen Whately has announced a review of the findings.

The study, which looked at deaths between 21 March and 5 June, found that 451 per 100,000 people registered with a learning disability had died with Covid-19 during that period.

Due to gaps in the data, the researchers estimated that it could be as high as 692 per 100,000 - 6.3 times higher than the general population.

The report suggests the huge disparity could be because people with learning disabilities are more prone to obesity and diabetes, which can increase the risk of dying from Covid-19.

'My brother was disregarded'

Adam Brown from Surrey was one of those young people with learning disabilities who died from Covid-19. The 30-year-old, who lived in residential care, fell ill at the beginning of March.

Despite displaying the symptoms of Covid-19, he wasn't tested until he was admitted to hospital. He died on 29 April.

Commenting on the report's findings, his sister Naomi Brown said: "Hearing and reading reports like this doesn't surprise me, it saddens me but it's not surprising.

"People like Adam, people who don't have their own voices to speak for themselves are just left, kept in the dark, disregarded.

"There's only us, the families, to speak and stand up for people like my brother."

Prof John Newton, PHE's director of health improvement, said "action must be taken to prevent this happening again".

He said: "It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic.

"But with cases developing across the country, it is essential to practice rigorous infection control if you are in contact with someone with a learning disability, whether or not they live in a care home."

A third of those who died with a learning disability during the first wave were living in residential care, which has led to criticism about infection control and lack of access to testing.

Dan Scorer, head of policy at the learning disability charity Mencap, said: "The government has failed to protect a group who already experienced serious health inequalities.

"Decades of under-investment in social care has left most people with a learning disability with no support to understand ever-changing guidance on staying safe and accessing testing."

Access to testing

The report highlighted that certain kinds of learning disability, such as Down's Syndrome can make people more vulnerable to respiratory infections. Adults with the condition have recently been added to the government's "clinically extremely vulnerable" list.

Almost half of those with Down Syndrome who died from Covid-19 were living in a care home.

The Down's Syndrome Association said priority must be given "to measures to prevent the spread of Covid-19 in these settings, including regular testing of care staff".

Responding to the report, Ms Whately said the government's scientific advisory group, Sage, would be asked to review the findings.

"There is now regular testing of staff and residents in care homes, and testing has also been rolled out to supported living settings in high risk areas," she added.

The BBC is not responsible for the content of external sites.

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Covid: Learning disability death rates 'six times higher'

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By Ruth Clegg Disability news producer People with learning disabilities were up to six times more likely to die from Covid-19 during the first wave of the pandemic, analysis shows. A report from Public Health England (PHE) found the death rate for those with a learning disability was 30 times higher in the 18-34 age group.

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Whose Life is Worth Saving? In Washington State, People With Disabilities Are Afraid They Won’t Make the Cut.
March 23, 2020
https://www.nytimes.com/2020/03/23/us/coronavirus-washington-triage-disabled-handicapped.html?searchResultPosition=19

This article tells about Washington's rationing scheme which is dealing with the coronavirus in case of shortage of lifesaving equipment. the life of people with disabilities will be in risk as they are more vulnerable to this disease. All people should have an equal access to lifesaving care.

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Advocates in Washington State fear that people who are disabled could be at higher risk of death when doctors and hospitals make end-of-life triage decisions.

A 200-bed field hospital was erected on a soccer field in Shoreline, Wash., as officials prepared for an influx of coronavirus patients. Credit... Grant Hindsley for The New York Times

SEATTLE - Groups representing people with disabilities on Monday challenged a plan that would guide hospitals in Washington State dealing with the coronavirus in the event that they do not have enough lifesaving resources for all the patients who need them.

The triage care plan could result in end-of-life decisions that disadvantage those with disabilities, said David Carlson, the director of advocacy at Disability Rights Washington. The group's complaint calls for the federal government to quickly intervene to investigate, issue findings and make sure that doctors and hospitals do not discriminate against people with disabilities when making treatment decisions.

"Washington's rationing scheme places the lives of disabled people at serious risk," the advocacy groups wrote in the complaint to the U.S. Department of Health and Human Services' Office for Civil Rights.

State officials and other health leaders around the country have developed triage strategies over the years to help guide hospitals during a crisis situation where they exceed capacity. Officials in Washington State have held discussions over the past week to prepare hospitals for the possibility they may have to put them into practice, fearing that a rush of coronavirus cases in the coming days could leave them with a shortage of crucial pieces of lifesaving equipment, such as ventilators.

The complaint in Washington State was the first to be filed, but advocates for people with disabilities said they expect to scrutinize similar triage plans around the country to see if they provide equal access to lifesaving care.

The federal government "has a very brief moment to intercede," the complaint said. If it does not, it said, "there will be no way to undo the lethal outcome of the discriminatory plans that have been formulated without O.C.R.'s guidance."

Washington State's triage document includes a range of factors for hospitals to consider in deciding who gets complete care. Much of the effort focuses on prioritizing people who have a better chance of survival, and among the factors it calls for hospitals to consider are a patient's "baseline functional status" and indications of declines in energy, physical ability and cognition.

Mr. Carlson said that wording concerned him, leaving it open to doctors to make quality-of-life judgments that would place people with disabilities at a disadvantage. He also noted that the document says doctors should consider underlying diseases that have a low likelihood of short-term survival in deciding whether those patients should receive scarce medical resources. That could affect people who have ailments such as cystic fibrosis, he said.

"We are in some urgent times," Mr. Carlson said. "These are not the times to throw out our core principles of fairness and equality. We don't want to look back on these times like we have on other times when we've had great fear."

The state's Department of Health did not immediately return a message seeking comment on the complaint.

State officials have expressed hope that the health system would be able to handle all the coronavirus patients expected to need aid. As Washington State became a center of the virus this month, officials were the first in the United States to implement some of the most sweeping social-distancing strategies to limit the spread of the virus, and health leaders have begun developing new extra hospital capacity, including at a field hospital on a soccer field north of Seattle.

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Whose Life is Worth Saving? In Washington State, People With Disabilities Are Afraid They Won't Make the Cut.

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Advocates in Washington State fear that people who are disabled could be at higher risk of death when doctors and hospitals make end-of-life triage decisions. SEATTLE - Groups representing people with disabilities on Monday challenged a plan that would guide hospitals in Washington State dealing with the coronavirus in the event that they do not have enough lifesaving resources for all the patients who need them.

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Learning Disabilities: What Educators Need to Know

April 23, 2020

https://www.foothillsacademy.org/community-services/parent-education/parent-articles/ld-educators-need-to-know

Learning Disabilities are a group of neurologic or brain-based disorders that affect people of average to above-average intelligence. These people are just as intelligent as their peers. Learning disabilities affect how a person information processing and, as a result, how they learn. Simply put, their brains are not wired the same way.

People, parents and teachers must understand that student with LD need different way to learn according to their ability and need.

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The term Learning Disabilities (LDs) refers to a collection of neurodevelopmental or brain-based disorders that affect people who have at least average to above-average intelligence. These individuals are as smart as their peers. Learning Disabilities affect the way a person processes information and thus how they learn information. Simply put, their brains are wired differently.

Learning Disabilities are common and affect approximately 5 - 15% of young people around the world. They are considered an "invisible disability".

Learning Disabilities are not new. Professionals have identified the characteristics of LDs for more than a hundred years even though the names used to identify them have changed. Researchers have studied the characteristics of Learning Disabilities extensively. Most of the research has been done on reading LDs which are the most common LD. It is suggested that 80% of LDs are in reading.

What Causes a Learning Disability?

Learning Disabilities have biological origins even though the exact causes are not truly understood. A combination of genetic (i.e., hereditary) and environmental (e.g., injury before or during birth, low birth weight) factors cause differences in the brain. This affects how the individual perceives or processes different types of information.

We can actually see physical differences between the brains of those with LD and those who do not through neuroimaging. Depending on the LD, we can see differences in size and level of activity in certain areas of the brain when compared to the brain of the same age without a LD.

While the exact causes of Learning Disabilities are unknown, we do know that they are NOT caused by:

ineffective teaching,

poor parental support,

economic disadvantages,

health-related problems,

lack of exposure to schooling/instruction, or

sensory deficits.

These factors, though, can contribute to students' learning progress and later academic success.

How Do LDs Impact Learning?

LDs can range from mild to severe. Some children have mild LDs that may only affect them in certain academic activities. Other children have severe LDs that can affect them not only in their academic work but also across social and home activities. Some students may have more than one LD.

The following chart shows some of the ways LDs can impair different cognitive processes. We all have difficulties in these areas from time to time. But, individuals with LD can struggle to learn in the same way and/or at the same pace as other peers their age.
Chart from Learning Disabilities Association of Canada
How Are Learning Disabilities Diagnosed?

A psychologist is the only person who can make a diagnosis of a Learning Disability through a process called a psycho-educational assessment. A psycho-educational assessment is a comprehensive look at the child's cognitive, academic, and social-emotional-behavioural functioning. As part of the assessment, a psychologist will gather information from both the child's parents as well as teachers.

Psychologists can use different definitions and criteria to identify a Learning Disability (see note). In Canada, psychologists often use the definition provided by the Learning Disabilities Association of Canada (LDAC). However, psychologists also often use the Diagnostic and Statistical Manual of Mental Disorders - Fifth Edition (DSM-5). The DSM-5 uses the term "Specific Learning Disorders" instead of Learning Disabilities.

If a diagnosis is made using the DSM-5 criteria, subsets of Specific Learning Disorders are identified with terms such as dyslexia (difficulties with reading), dysgraphia (difficulties with writing), and dyscalculia (difficulties with math). A persistent difficulty learning key academic skills and poor academic performance are consistent criteria for diagnosis of a Learning Disability whether the LDAC definition or DSM-5 criteria is used.

Learning Disabilities can be difficult to diagnose. Part of the process includes ruling out other conditions that can cause a child to struggle at school and home such as an intellectual disability, ADHD, or a mental health concern.

To further complicate the diagnosis process, many young people with LDs will meet the diagnostic criteria for additional disorders. Many of these diagnoses have common genetic origins. The most common diagnoses for students with LDs are:

Attention Deficit Hyperactivity Disorder (AD/HD)

Depressive Disorders

Anxiety Disorders

Language Disorders

Autism Spectrum Disorders (ASD)

Developmental Coordination Disorder (DCD)

Behavioural Disorders

In the media, ADHD (Attention Deficit Hyperactivity Disorder) and ASD (Autism Spectrum Disorder) are often lumped together and referred to collectively as "Learning Disabilities" which is incorrect. While ADHD and ASD can definitely affect learning, they are distinct disorders with their own criteria for diagnosis.

How Does Having a Learning Disability Affect My Student?

There is a saying that can apply to the LD population: If you have met one person with a Learning Disability, you have met one person with a Learning Disability. This saying highlights the fact that LDs can show up differently in each individual.

A key feature of those with LDs is the unusually high level of effort and support required for the individual to achieve at the same level as their peers despite their strong potential. This can lead to great frustration and in some cases cause the individual to give up due to fear of failure.

Some students may appear "lazy," unmotivated or show a lack of effort. In actuality, they may have become discouraged because they've been struggling significantly, often over a long period of time. Individuals with LDs tend to get the most attention and feedback for their difficulties instead of their strengths. This lack of positive feedback and the repeated academic failure they may experience can lead to a sense of incompetence. Feelings of failure and incompetence can negatively impact student motivation, desire to improve, social functioning and emotional well-being.

It is also well understood that individuals with LDs often do not have a "knowledge deficit" but instead have a "performance deficit". This means that they know what they are supposed to do but they struggle to perform the task when required. This can lead to social challenges because they struggle to apply appropriate social skills in the moment. Social challenges can include difficulties connecting with others, making friends, and understanding what is expected of them in social situations. They may miss social cues or misinterpret body language and tone of voice. As a result, they may be rejected by peers and may become targets of teasing and bullying. Students rely on friendships to provide them with a sense of acceptance, belonging, and approval. Social challenges can have a significant negative impact on a child's self-esteem and create anxiety about social situations and activities.

How Are Learning Disabilites Treated?

There is no way to "cure" Learning Disabilities. But, research supports the two most common treatments: remediation and accommodation.

1. REMEDIAL INSTRUCTION (Special teaching techniques)
Remedial instruction helps students to build up their foundational academic skills. Remedial instruction may be provided as part of a student's school programming (e.g., pull-out instruction in small groups) or arranged outside of school by families privately. Remedial instruction targets the particular skill in which the child is showing gaps. Most research has been conducted in the area of reading. It suggests that such programs should be:

multi-sensory in nature (use sight, sound and touch),

taught in a step-by-step fashion at the student's pace, and,

offer regular reviews to reinforce learning and practice of the new concepts.

2. CLASSROOM ACCOMMODATIONS
Accommodations help to level the playing field for children with Learning Disabilities. They do not change the curriculum the child is expected to learn. Instead, they provide what the child requires to access the curriculum (i.e., changes how they learn). In other words, they lower the barriers in the classroom, not the bar! Examples of accommodations include:

a. Instructional/Environmental:
These accommodations help match teaching methods and the classroom environment more to the child's individual learning needs. These accommodations can vary from how material is presented (e.g., audio recording for a child who struggles with reading) to the setting (e.g., where the child sits).

b. Testing:
These accommodations ensure the child is able to demonstrate their knowledge of what they have learned. They can vary from how the child responds (e.g., an oral exam rather than a written one) to changes in the timing and scheduling of the test (e.g., extra time).

c. Assistive Technologies:
In our 21st century world, technology is important for all students. But, it represents a key strategy in supporting students with LDs. Assistive Technology involves any device, equipment, or system that allows an individual with a disability to work around their challenges. It can vary from very simplistic technology (e.g., calculator) to more complex (e.g., text-to-speech software). Not every technology will be a good fit for each student. It is important to ensure that the tool not only addresses the student's particular need but that the child is capable of using, and willing to use, the tool. Many assistive technology tools can be used throughout the student's education, including at the post-secondary level, and even in the workplace.

The type of remedial instruction and the classroom accommodations suggested for an individual will depend on their learning profile and specific LD. Furthermore, these may change as the individual develops and encounters greater academic demands.
Regardless of age, individuals with LDs should be taught how to self-advocate for their learning needs. It is important that they learn how to ask for the supports they need. Help the student to discover their learning strengths and needs; what supports their learning; and how to communicate these needs appropriately. In particular, self-advocacy builds self-confidence, independence and success in post-secondary and the workforce.

In Alberta, the recommended supports and strategies for students from Kindergarten to Grade 12 are outlined in an Individualized Program Plan (IPP). An IPP is a living document, which can change over time. It translates a student's needs into the supports required, goals to work towards, and strategies to accomplish these goals. These strategies are typically outlined in the psycho-educational assessment report.

A child's IPP team generally consists of their parents, teachers, resource teachers, and often a principal/assistant principal. The team should meet a few times a year to discuss whether the student's goals are being met and how to continue working towards them. IPPs do not follow students into the post-secondary system. But, these students are still eligible for supports, accommodations, and grant funding at this level. They must have an up-to-date psycho-educational assessment, which shows the barriers they might experience because of their learning challenges.

Both remediation and accommodation are possible within all classroom environments. But, in some cases, these treatments are not enough. Thus, a special education placement may need to be considered for the student. These placements provide smaller class sizes and specially trained teachers. They also provide access to other treatments the student may need. For example, they may allow the student to see an Occupational Therapist to support motor concerns. If a special education placement is not possible, such supports can be accessed privately. There are a number of funding options that can be accessed to help families with these costs.

How Can I Support Students with Learning Disabilities in the Classroom?

No two students with a Learning Disability are the same. Each individual's profile must be considered in determining the best fit of supports, strategies, and accommodations for them. But, research supports some key principles to consider in working with the majority of students with LD, along with suggested strategies for the classroom.

1. Provide opportunities to experience success.
Many students with Learning Disabilities can begin to feel hopeless. They become reluctant learners after experiencing failure over time. So, it is important to find ways to build the students' sense of competence where they're at.

Match learning commensurate with their needs. For example, consider the child's zone of proximal development the difference between what they can and can't do without help.

Foster "islands of competence" or areas of pride and accomplishment. These may be outside the academic realm (e.g., sports, music, leadership opportunities)

If possible, communicate regularly with parents with good news. This will allow the child to be celebrated in both the home and school environments.

2. Make expectations clear.
Students with LD frequently exhibit unrealistically high pre-task expectations. This may be due to: being expected to do things they are not yet capable of doing, misperceiving task demands, difficulties understanding the task, inaccurately matching demands to ability level, selective attention to what has been mastered versus what has not, or inaccurate self knowledge. Get rid of the ambiguity as much as possible by providing explicit explanations about tasks, assignments, and tests/exams.

Have realistic expectations and set standards of success that are achievable for the student

Don't just tell them what you don't want them to do; tell them exactly what you do want them to do.

Use simple language, repeat directions/instructions, and check-in for understanding

Provide rubrics/exemplars of assignments that they can work towards

Help students to break down a large task into its components and check-in on each of these components

3. Provide frequent, positive feedback for both academics and behaviour being sure to praise effort and strategies, not product or success.
As noted above, students with LD tend to receive more negative than positive feedback. Many opportunities to provide feedback on what they are doing correctly are often missed. Be sure to "Catch 'em being good!" Furthermore, students with LD often need to put forth much greater mental effort to meet the same task demands as others. And, they may not be able to meet those demands in the same way. As such, it is important to ensure that we are measuring them against their own progress. Goals on their IPP can assist with this.

Provide a combination of both summative and formative feedback to better assist students in directing their behavior and academic goals

Ensure that feedback is not only sincere, but also specific and immediate. This helps to ensure that the positive behavior will occur again. IFEED is a useful acronym to assist in remembering how to provide positive reinforcement:

I - Immediately
F - Frequently
E - Eye Contact
E - Enthusiastically
D - Describe

Build personal connections with students. Don't forget the profound value of giving a struggling student eye contact and a genuine smile.

Be flexible on expectations. An example of this is avoiding grading students for neatness if they struggle with motor coordination

Fair doesn't mean equal. If the student has an LD that impacts their ability to complete math tasks, expecting them to complete the same 20 questions for homework as others in the class can be defeating and exhausting. Five questions may be enough to ensure and show that the student is understanding the concept.

4. Provide scaffolding as required.
Much like students with ADHD, students with LDs can be inconsistent in their skills. They can be inconsistent from one day to another and subject to subject. They can also be inconsistent within the same day, subject, or skill area. As noted above, they can also often show knowledge about a particular concept but fail to put this knowledge into practice when expected. As such, each student needs to be met where they're at and provided the needed supports to move them towards greater independence in skill areas.

Slowly increase independence and complexity

Follow these steps in order (the amount of time required at each step will vary for each student):

Explicitly model the skill;

Do the skill together;

Have the student do the task with help;

Have the student do the skill independently;

Eventually fade support.

Be sure to celebrate each accomplishment!

5. Keep the Tanks Full.
Kids with LD use a lot of mental energy and can deplete faster than other kids. Provide opportunities for brain breaks, snack breaks, and regular exercise. These can help with modulating frustration while also increasing attention and productivity. Some suggested programs include (but are not limited to):

Remember that recess is necessary! Don't take it away as punishment.

6. Use Universal Design for Learning (UDL).
Although each learning profile is different, what can help one student can often help most, if not all, students within a classroom. Many of the best practices for teaching are applicable to students with LD.

Use visuals to support content and to show typical routines (e.g., visual schedule)

Provide lesson outlines and copies of notes to student(s)

Have clear visible objectives on the board

Whenever possible, allow students to set their own pace of task completion

Provide a quiet space to work

Have consistent and predictable routines and expectations for instruction and assessment.

Support development of executive functioning skills (e.g., planning, time management, organization):

teach colour coding of materials;

teach students to make checklists for the steps of big projects and assignments;

provide and explicitly teach how to use organizers, planners, lists and mindmapping software;

highlight key words on worksheets; explicitly teach students how to create study guides and how to study

Give choice and differentiation in products to personalize learning; this can help maximize student potential through engagement.

For example, if the purpose of an assignment/test is to demonstrate knowledge on a topic, allow students to choose how they demonstrate this knowledge They may choose to do this through written, oral, or other creative means.

7. Teach them about their brains.
Educating students about their brain is an important way to help them not feel bad about the challenges they face. All students have strengths and weaknesses in their cognitive profile. A student with a Learning Disability/Disorder needs to understand how the disability/disorder impacts them. They also need to recognize that the diagnosis is only a small part of who they are. A young person is also more likely to advocate for themselves if they understand the disorder. For example, they can request accommodations or use strategies they have been taught. As well, other students in the classroom are more likely to have empathy for a student with a Learning Disability if they understand each other's learning differences.

Have the entire class watch age appropriate videos on how the brain works

Create a 'menu' of strategies for the student to try in different circumstances

Work together with the student to identify a list of strategies that work best for them

Scaffold their self-advocacy skills overtime

Help them see and embrace their academic strengths

Note on Learning Disability Definition: The LDAC definition indicates that individuals with a Learning Disability have average to above average intelligence. This means a general IQ of 85 and above. Since the DSM-5 was introduced in 2013, the term Specific Learning Disorders is now often used. As defined in the DSM-5, Specific Learning Disorders include a general IQ of 70 and above. These ranges are quite large. This means that the level of supports required, both within the home and school environments, can vary greatly. Individuals with an IQ closer to the 70 mark may require information to be explained in concrete terms and support with complex daily living tasks such as making meals or managing money. Conversely, individuals with an IQ closer to the 100 mark and above may only need support for higher academic tasks and are quite capable of continuing on to a post-secondary education. These are the individuals that Foothills Academy identifies as having Learning Disabilities, in matching with the LDAC definition.

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Learning Disabilities: What Teachers Need to Know

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The term Learning Disabilities (LDs) refers to a collection of neurodevelopmental or brain-based disorders that affect people who have at least average to above-average intelligence. These individuals are as smart as their peers. Learning Disabilities affect the way a person processes information and thus how they learn information.

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Disability Portrayal on Screen Hits a Landmark High, Yet Reinforces Negative Stereotypes

May 4, 2020

https://www.respectability.org/2020/05/see-jane-study-disability-portrayals/

Characters with Disabilities are more likely to be saved or killed, so those in the workforce are positively portrayed in family films.
People with disabilities are almost never seen on TV, and when they are, it is in a negative light, diminishing chances for people with disabilities everywhere. A new study, however, discovered that the family film industry maintains a historic high for leading characters with disabilities.

It is interesting to know how the media has impact on people option and point of veiw. We should use the media power to change people's sterytype about people with disability.

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What You Should Tell Your Kids about People with Disabilities
September 14, 2020

https://www.forbes.com/sites/andrewpulrang/2020/09/14/what-you-should-tell-your-kids-about-people-with-disabilities/?sh=e260661e18dd

This article gives answers to a very important question: how should we or the people with disabilities react when children stare, point and ask bold question about disabilities in a loud voice, in public. The parents should handle the situation in a way that will not upset either the person with disability or their child.
It is important to talk to our children not just about disabilities but about ableism as well.

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What You Should Tell Your Kids About People With Disabilities

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"Mom, what's wrong with that man?" It's one of the more common dilemmas faced by people with a noticeable disability: How should we react when children stare, point, and ask bold, unguarded questions about our disabilities in a loud voice, in public?

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Edmonton Mother Says Daughter with Down Syndrome Facing Age Discrimination
September 14, 2020

https://globalnews.ca/news/7333616/edmonton-mother-daughter-down-syndrome-discrimination/

An Edmonton mother was told that, according to Alberta's Child Care Licensing Act, her 15-years-old daughter with Down Syndrome could not longer attend out-of-school care program. The mother wants to challenge the Act. Special needs of people with disabilities should be deemed individually.

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An Edmonton mother wants to challenge Alberta's Child Care Licensing Act.

Jill Scobey said the act discriminates against families with children with disabilities and her 15-year-old daughter Raedun.

Raedun has Down syndrome and had been attending the same out-of-school care program in the city since she was in Grade 1, but last Tuesday, Scobey was told her daughter could no longer attend.

The Child Care Licensing Act states a child under 13 years of age can attend a child care program, or a child 13 or 14 years of age who has special needs and requires care.

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Scobey said her daughter turned 15 in August, and functions at the level of an elementary school-aged child. She said Raedun thrives on consistency and is given special care and attention at the out-of-school-care centre, where staff guide her through tasks, providing life skills and preparing her for adulthood.

Scobey said a "typical" family would not be rushing to send their teenager to a care program and said there should be more options for families with children with disabilities.

She said her constitutional right to choose what works best for her daughter has been taken away. She has called on the UCP government to change the rules.

"The legislation has not changed in more than a decade," said Lauren Armstrong, with the Office of the Minister of Children's Services.

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Parents say Alberta students with disabilities being left out

Scobey confirmed Children's Services and the FSCD program is now working with her to find another option for Raedun and her daughter is able to stay at her out-of-school care program until other arrangements are made.

Under the FSCD program, a support worker will help create an Individualized Family Support Plan (IFSP) to determine the short- and long-term goals for a child in the home, school and community.
READ MORE: Alberta should use 'holistic' approach to safety standards for people with disabilities: report
Scobey said she is not comfortable sending her daughter to a private day home where there is no government oversight.

The mother has reached out to her MLA and other levels of government to spread her message.

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"If the daycare is OK with taking the child and having that child there, why is that an issue?"

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family support for children with disabilities

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Edmonton mother says daughter with Down syndrome facing age discrimination

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An Edmonton mother wants to challenge Alberta's Child Care Licensing Act. Jill Scobey said the act discriminates against families with children with disabilities and her 15-year-old daughter Raedun. Raedun has Down syndrome and had been attending the same out-of-school care program in the city since she was in Grade 1, but last Tuesday, Scobey was told her daughter could no longer attend.

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Is The Social Media Generation Transforming Disability Representation?

September14, 2020,11:06am
https://www.forbes.com/sites/carolinecasey/2020/09/14/is-the-social-media-generation-transforming-disability-representation/?sh=5df56ed86084

It is an undeniable fact that the world is experiencing a disability disparity crisis, and the Covid-19 pandemic has revealed and exacerbated the challenges faced by up to 20% of the global population. Nonetheless, the voice of a new generation of disability advocates is breaking through, amplifying a new story with today's techniques.There is no doubt that social media has played a significant role in this visibility revolution, allowing young people to be seen and heard.
At least there is a bright side of the pandemic that allows people with disability to be heard and seen.

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THE ROADMAP FOR THE EUROPEAN DISABILITY RIGHTS STRATEGY 2021-2030 HAS BEEN PUBLISHED.

October 29, 2020
https://www.ifglobal.org/news/the-roadmap-for-the-european-disability-rights-strategy-2021-2030-has-been-published/

The European Disability Rights Strategy is both European and multinational in scope. The CRPD is supposed to be mainstreamed into all EU policies and acts, including external actions, according to the plan. This may include ensuring that no EU funds are used for projects that breach the UNCRPD, whether inside or outside the EU. The European Disability Strategy (EDS) is a plan to help people with disabilities.

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The European Commission has various processes to allow citizens and stakeholders to comment on policies and laws as they are being developed. One of the ways in which the European Commission does this is by publishing a 'roadmap' which outlines the main priorities expected to be incorporated into the final version of the document. Anyone with an EU login (which can be easily created by any citizen here) can then comment on published initiatives within the timeframe set by the Commission. This feedback can be given anonymously, as a citizen or as a representative of an organisation.
The roadmap for the European Disability Rights Strategy 2021-2030 has been published and can be found here. The deadline to respond is 12th of November (midnight, Brussels time).
IF welcomes the roadmap, in particular the acknowledgement within it that health is an important topic for persons with disabilities in Europe. It is especially important to see the issue of 'equal access to healthcare' being addressed as it reflects IF's position to raise awareness of health, disability and SBH in context of Art 25 of the UN Convention on the Rights of Persons with Disabilities. Which emphasises not only the access to disability-specific healthcare and services, but also the principle that persons with disabilities must have equal access to healthcare on the same basis as their peers. This is an important element of multidisciplinary care for SBH.

IF will contribute to the consultation on the roadmap for the European Disability Strategy 2021-2030 and urges its European members to do the same. Just log on to your EU login or create one if you haven't already and provide your feedback here, before the 12th of November. Having a strong voice from the SBH community is essential to ensure that the concerns of individuals with SBH are addressed in the strategy. IF also continues to participate in stakeholder consultations on the European Disability Strategy 2021-2030 organised by the European Commission.

This is important because the European Disability Rights Strategy will set the priorities and ambitions of the European Union and its Member States for action on disability policies from 2021 to 2030. The strategy will play an important role in implementing the UNCRPD and to improve the lives of persons with SBH in Europe and beyond.

The European Disability Rights Strategy has a global relevance as well as a European one. The strategy is expected to address the mainstreaming of the CRPD into all EU policies and actions, this includes external actions. This could include ensuring that no EU funds, whether being used within or outside the EU will be used for projects which violate the UNCRPD. The European Disability Strategy also demonstrates the viability and power of regional collaboration on disability rights and has the potential to set an example for the international community.

If you have any questions or comments then please contact IF European Policy Officer, Hildur Önnudóttir at hildur.onnudottir@ifglobal.org

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The roadmap for the European Disability Rights Strategy 2021-2030 is open for feedback

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The European Commission has published a Roadmap for the European Disability Rights Strategy 2021-2030. An important part of IF's policy and advocacy work is to partake in consultations, both those open for the general public as well as targeted stakeholder consultations.

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Texas allows social workers to deny LGBTQ, disabled clients

October 17, 2020

https://abcnews.go.com/Health/wireStory/texas-social-workers-deny-lgbtq-disabled-clients-73666818

After allowing social workers to turn away clients based on their disability, sexual orientation, or gender identity, Texas officials have faced criticism.

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Margaret Breihan relies on the nursing assistants who visit six mornings a week to help her shower, dress and tidy up her Silver Spring, Maryland, apartment.

Breihan, 31, who has cerebral palsy, is mostly self-reliant and does everything from shop to cook from her electric wheelchair but she has limited mobility and struggles with daily tasks like pulling clothes out of a dryer or showering.

Sheltering in her apartment for the past two weeks amid the coronavirus outbreak, she lives in daily dread of one day finding out the help can no longer visit. One of her helpers lives with a daughter who is a nurse at a local hospital, deepening her concern for infection.

"I keep waiting every morning for the phone call that the agency is withdrawing its assistance," said Breihan, who is pursing a master's degree in social work at Catholic University of America in Washington, D.C. "It hasn't happened, thank God. But it's a scary prospect, I won't lie."
Coronavirus live updates: Thurday's news on the stimulus bill, US cases
People with disabilities and chronic health conditions are some of the most vulnerable groups during the coronavirus crisis, though often overlooked in the national debate, according to advocates. The virus has infected more than 69,000 Americans and led to nearly more than 1,000 U.S. deaths, according to a site run by Johns Hopkins University.

On Wednesday, 27 U.S. representatives and five senators sent a letter to the Department of Health and Human Services, or HHS, and U.S. Attorney General William Barr, urging them to issue guidance to state agencies to protect people with disabilities from being discriminated against during the outbreak. U.S. Rep. Chris Smith, R-NJ, led the effort.

A $2 trillion relief bill passed by the Senate earmarks some relief for those with disabilities, such as $85 million for centers for independent living, but has a long way to go to protect the most vulnerable, U.S. Bob Casey, D-PA, said.

"If you have a disability, your daily life is often a series of struggles to begin with," said Casey, who has advocated for more assistance for the elderly and people with disabilities during the outbreak. "Those challenges that they face are now that much greater. We have to try to be responsive to that."

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One of the concerns is whether people with disabilities will be sidelined for healthcare as medical equipment such as ventilators and hospital beds become increasingly scarce, said Ari Ne'eman, visiting scholar at the Lurie Institute for Disability Policy at Brandeis University in Massachusetts.

A number of states, including Utah, Tennessee and Alabama, have emergency contingency plans that direct hospitals not to provide medical equipment, such as ventilators, to people with certain intellectual and cognitive disabilities, should that equipment become scarce, he said.

On Tuesday, several groups, including the Center for Public Representation and the Alabama Disabilities Advocacy Program, filed a complaint with HHS's Office of Civil Rights, alleging the Alabama Department of Public Health's Emergency Operations Plan violates federal disability rights law, including the Americans with Disabilities Act (ADA), according to the complaint.

"There are very severe concerns that disabled people are going to be sent to the back of the line when accessing healthcare equipment such as ventilators," Ne'eman said.

Signed into law 30 years ago this July by former president George H.W. Bush, the ADA is the signature civil rights law for people of disabilities, prohibiting discrimination in all areas of public life, including jobs, schools and transportation.

As hospitals and the federal government reach crisis levels because of the pandemic, advocates are closely watching to see whether the ADA is adhered to, Ne'eman said.

"What we're really going to see determined here is whether this country really meant it when they passed the ADA 30 years ago, that they passed it as a civil right and not as an act of charity," he said. "You can do away with charity when times are tough. You cannot do away with civil rights."

The National Disability Institute hosted two webinars this week to explain developments and field questions regarding disabilities and the coronavirus. The online sessions drew more than 1,500 attendees.

One of the voiced concerns was that health care providers were not going to be able to continue making home visits as the outbreak deepened, said Michael Morris, the institute's founder and senior strategic adviser. With no home care, states could turn to grouping those with severe disabilities in state-run facilities -- a trend advocates have worked hard to reverse over the past three decades, he said.

There's also fear that hospitals will classify people with disabilities and chronic illnesses as a lower priority for healthcare -- a fear Morris said he's experienced firsthand. As a person battling cancer, Morris had been going to a Washington-area hospital once a month for chemotherapy and had investigative surgery every three months, he said. The hospital recently told him they're suspending his treatment to redirect doctors and space to coronavirus victims.

"This story is playing out by the thousands across the country," Morris said. "People with disabilities and chronic health conditions are incredibly afraid of the rationing of healthcare."

As the pandemic took hold in the U.S., Breihan began prepping. Her classes at Catholic University went online so she was able to continue with those. Her mother brought her cash and friends volunteered to deliver groceries. In case her helpers stop coming, she bought a "reacher-grabber" through Amazon.com that allows her to pull laundry out of the dryer. She plans to struggle through sponge baths.

Breihan's greater concern is what happens if she gets infected. Drive-through testing sites won't help her or thousands like her, she said, since she doesn't drive. If some day she needs emergency healthcare, she hopes she doesn't wind up low on the list of priorities.
Jervis is an Austin-based correspondent for USA TODAY. Follow him on Twitter at: @MrRJervis.
"I do my best to contribute to our society," Breihan said. "Just because I live a life that might be different from yours, doesn't mean my life isn't valuable and worth saving and worth protecting."

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People with disabilities are afraid they will be denied health care because of coronavirus

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Margaret Breihan relies on the nursing assistants who visit six mornings a week to help her shower, dress and tidy up her Silver Spring, Maryland, apartment. Breihan, 31, who has cerebral palsy, is mostly self-reliant and does everything from shop to cook from her electric wheelchair but she has limited mobility and struggles with daily tasks like pulling clothes out of a dryer or showering.

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Disabled Canadians ignored in policies on COVID-19

October 2, 2020
https://policyoptions.irpp.org/magazines/october-2020/disabled-canadians-ignored-in-policies-on-covid-19/

This article approaches to managing COVID-19 in Canada's first wave and plan for future waves in each province and territory, the government has an opportunity to show leadership and dedication to helping disabled Canadians and meaningfully engage this community on the issues that affect them the most.

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Disabled Canadians ignored in policies on COVID-19

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Lack of financial support, poor data and insecure housing mean disabled and autistic Canadians will not get the help they need during the pandemic.

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How COVID-19 exposes a disability reporting gap
October 12, 2020

https://www.poynter.org/reporting-editing/2020/how-covid-19-exposes-a-disability-reporting-gap/

Issues such as police violence and climate change disproportionately affect the disability community. However, disabled people's voices are rarely heard in the media.
Surprisingly, COVID-19 provided opportunities to report on disabled aspects of the ongoing health crisis in ways that the community has been discussing for decades.
Unexpected that the pendamic gave the chance for people with disability to make their voices heard.

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When reporting on disability, a May 2020 update to the Associated Press Stylebook suggests asking subjects whether they prefer identity-first language or person-first language. But many articles still make presumptions about how disabled people identify and how their disability impacts their lives. Writers and editors say the industry sorely lacks disability representation, even as COVID-19 pushes disability-rights topics like accessibility and mail-in voting to the forefront.

The common message from disabled journalists in the industry is for nondisabled reporters to acknowledge that disability, like other identities, is interwoven into their subjects' lives and that this is especially true during a time of such medical uncertainty, with anxiety over unknown long-term health effects looming. One of those journalists is s.e smith, a writer and a deputy editor for publications like Talk Poverty, Bitch, The Nation and Rolling Stone.

"Disability has such a bearing on every aspect of our everyday lives that it is ludicrous to act like it won't touch pretty much every story," smith said. "You see this, even with reporting on COVID, which you would think it's like a disability issue. I'll do a Ctrl F and search for disab(ility) and like nothing comes up, and that tells me that that reporter is not doing the work. Probably because they don't know that they should be doing the work because their newsroom isn't training and supporting them properly."

Searching for disability as a subject or aspect of regular reporting and finding nothing - or worse, finding something actively harmful - is a regular part of every disabled journalist's routine. Those who spoke to Poynter for this story pointed to a lack of disability representation in stories about climate, police violence against racialized communities, and voting and polling issues as examples of where the media has left disabled voices and stories behind.

But COVID-19 has opened up opportunities to report on disabled aspects of the ongoing health crisis in a way that the community has been speaking about for decades. Sara Luterman is a freelance journalist for publications such as NBC, Vox, and The Nation. She said a piece that she wrote in August is an example of how disability issues can reach a broader audience and not be limited to a one-off feature or beat reporting.

"I recently wrote a piece for The Nation about nursing home abolition, which is something we've been talking about for years and years and years," Luterman said. "I mean, since the independent living movement started in like the '60s, but it's not really something that people outside of our community ever really thought about. So finally, having an opportunity to expose people in the mainstream to those ideas has been actually very gratifying even if the reason that we're able to do it is horrifying."

This lack of stories where disability is a regular aspect of reporting reflects a distinct lack of care when it comes to nondisabled journalists writing about the community. Alice Wong, founder and director of the Disability Visibility Project, said that one way nondisabled reporters go awry is in their choice of words that devalue the subjects of stories.

"Nondisabled reporters continue to use euphemisms such as 'special needs' or 'preexisting conditions' when what they're actually referring to is disability," Wong said. "What are people so afraid of? Nondisabled people may also have implicit bias that disabled people have lives that are tragic or are of lower quality that aren't worthy of treatment or care."

Another common pitfall is nondisabled reporters actively choosing to not interview disabled people. Wendy Lu is a journalist for the Huffington Post and said that stories, particularly on the health beat, tend to use caregivers and friends as sources rather than members of the disability community.

"If there's a story that is about disability, but ... a single person with a disability is not spoken to for the story, that's a big issue," Lu said. "I feel like with any story, if you're writing about somebody, or a community, you have to talk to them, right? Otherwise we would just have peripheral voices."

While diversity statistics about disability in American media are hard to come by, and marginalized journalists often being asked to work for free, Wong said the key is having more disabled journalists in the newsroom.

"Hire and involve disabled people. Have disabled people review and test things for accuracy, accessibility and sensitivity," Wong said. "Conduct meaningful engagement with the disability community and show up for them rather than performative allyship."

Emily Ladau, editor-in-chief at Rooted in Rights, echoed Wong's statement. "We forget that disabled people shouldn't just be subjects of stories or people who we quote for free labor all the time," Ladau said. "It's time to shift that focus away from against disabled people being subjects to disabled people being the ones who are driving the conversation."

Like with reporting on any marginalized community, reporters and editors may need guidance for how to report on the disability community in a way that reflects knowledge on the group. While the update from the AP Stylebook did expand on its disabilities section, its framework is still limited. In general, resources on reporting on the disability community are sparse.

The National Center on Disability and Journalism, at Arizona State University, is one place that journalists can look to for tools to improve their disability reporting. Kristin Gilger, director of NCDJ and interim dean of the Walter Cronkite School of Journalism and Mass Communication told Poynter that some NCDJ's resources include its Disability Language Style Guide, lists of disability organizations and experts and a "Reporting on Disability" checklist.

"The most popular is our Disability Style Guide, and it has dozens of words and terms related to disability and provides context and advice on language use," Gilger said. "That can be very helpful because language with regards to disability changes very quickly. It can be offensive if you choose some words over others."

While NCDJ's style guide has more extensive guidelines than the AP Stylebook, many disabled journalists think there is still room for improvement. smith said that "there are parts of the NCDJ guide that I do not like, especially around person-first versus identity-first language." smith pointed out that the small team of people involved in the creation of the guide should not be considered as entirely representative of the community. smith encourages journalists navigating reporting on disability to "talk to people because the community is so diverse."

Gilger said that NCDJ's guide tries to "educate people so that they can make their own decisions," rather than taking stances on certain terminology. "As we noted in the style guide, there is not a unanimous agreement on using people-first versus identity-first language," Gilger said. "Within certain communities, identity-first language does seem to be the preferred language."

From articles to well-intended resources, the media can fail at accurately representing the disability community. Ladau faced this situation with Rooted in Rights in April, when the publication pulled a story about virtual learning and students with intellectual and developmental disabilities after self-advocates pointed out harmful tropes in the piece. In a statement on Rooted in Rights' website posted after removing the article, Ladau wrote that "the piece was rooted in ableist concepts of 'normal' behaviors and behavioral 'regression,' as well as the use of segregated learning environments."

The criticism led Rooted in Rights to take accountability for its harm, which Ladau noted that bigger publications may not always do. "When you have people who are identified as part of a community coming to you and saying, 'Hey, what you put out into the world is causing harm,' take a second look at that. You need to take that really seriously," Ladau said.

Many issues on disability reporting raised by disabled writers and editors come from how nondisabled reporters view disabled people. In July, Luterman criticized a New York Times article about gene editing because it "fail(s) to ask a single disabled person how we feel about it." Luterman told Poynter that nondisabled reporters write about disabled people in a way that "makes people feel good about themselves or illustrate those suffering and often don't tell our own stories."

Editors and journalists who talked to Poynter for this piece highlighted the lack of disabled people in media and issues with how the disability community is reported on. Stories on disability should not just be tied to milestones like the 30th anniversary of the American with Disabilities Act or written about in an inspirational way.

Disability reporting should instead be weaved into regular reporting, as the disability community have and will be affected by issues which already garner national media attention, like climate change and police brutality.

"It's good to see that we're getting more coverage," Ladau said, "but I think that we need to move to the point where it's no longer a novelty."
John Loeppky is a Saskatchewan-based disabled journalist and theatre artist. His work can be read at outlets such as FiveThirtyEight, CBC, and Briarpatch Magazine. You can follow him on Twitter at Cymru_Et_Canada and find more of his work at https://linktr.ee/johnloeppky Julia Métraux is a health and culture writer whose work has appeared in Narratively, The Tempest, BUST, and Briarpatch Magazine. You can follow her on Twitter at @metraux_julia and read more of her work at https://juliasmetraux.journoportfolio.com/

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How COVID-19 exposes a disability reporting gap - Poynter

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When reporting on disability, a May 2020 update to the Associated Press Stylebook suggests asking subjects whether they prefer identity-first language or person-first language. But many articles still make presumptions about how disabled people identify and how their disability impacts their lives.

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Toronto man’s lawsuit against Apple a reminder that disability discrimination in tech still happens, says employment lawyer

FEBRUARY 6, 2020

https://www.itworldcanada.com/article/toronto-mans-lawsuit-against-apple-a-reminder-that-disability-discrimination-in-tech-still-happens-says-employment-lawyer/426721
This article was a surprise to me, how a company that well known internationally doesn't have accommodate its employees. Having discrimination to people with disability .
In my opinion. While it is easy for many people to see everything that is , it is not true for every employer. Accessible Canada Act is not only beneficial for people with disabilities, but also ensures that businesses and employers provide and maintain appropriate access to the workplace.

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IT World Canada - Information Technology news on products, services and issues for CIOs, IT managers and network admins

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Interacting with customers, fixing their devices, and getting a front-row seat to Apple's latest offerings were a regular occurrence for Robert Shaw, who, until last summer, worked for the tech giant since 2011.

But now the 33-year-old is suing his former employer for lost wages and damages, alleging that Apple repeatedly refused to work on an individual accommodation plan with him and instead provided piecemeal solutions to his disability.

Shaw requires the use of a wheelchair, and as a former member of the technical support "Genius" team - the blue-shirted Apple experts who know the company's products inside-out - had made several requests once he was transferred to Apple's Sherway Gardens store in Toronto late 2017. Before that, he worked in an Apple Store across town in Mississauga.

Shaw requested tables that were 30 inches off the ground, roughly five inches lower than the ones typically found in the store. Reaching up to handle products and addressing customer requests was an awkward motion that consistently put stress on his upper body. He said he was assured that, upon his arrival, the tables would be in place, and automatic doors would be installed so he wouldn't have to wrench them open from his wheelchair.

Four months passed at the Sherway Gardens Apple store, and none of his requests were addressed, he said. Instead, management experimented with small trays - Shaw describes them as small TV trays - that attached to his wheelchair. It took several months for the trays to arrive, and once they were installed, it was quickly apparent they weren't going to work. The trays were unstable, and it didn't solve the original problem of providing him with an adequate workspace that would allow him to work with large hardware.

"I couldn't work with computers on that table," he said.

Worse yet, the remote for the automatic doors malfunctioned once he started, and it took four months for the store to replace it, he adds.

He was increasingly confined to the back of the store where he performed repairs, unable to interact with customers. Eventually, the store installed new tables but they still failed to meet the height requirement.

The next day would be his final one at the Apple Store. During his final conversation with management last July, he said he was told the tables and the automatic doors were "Apple's answer to sustainability".

Apple declined to automate the four remaining doors due to the added expense, noted a Dec. 17 press release from Monkhouse Law, Shaw's legal representation.

Apple did not respond to multiple requests for comment.

Shaw said, for months, he felt like he was becoming an inconvenience to the rest of the employees at the store.

But he was convinced that he shouldn't have had to feel that way.

"For a long time I felt like I was asking for too much and becoming a burden for the store," he said, after describing the moment he finally decided enough was enough after management told him not to expect things to change.

"These aren't things I should be asking for. That's how I felt."

In addition to shooting pains in his hands from the improper ergonomics that he's had to treat with physiotherapy, the constant back-and-forth with management led to significant stress.

The stress has been reduced now that his story is public, said Shaw. The support from friends and family has been encouraging. But questioning his place at the store and feeling like a burden on others is not something he's experienced elsewhere.

"I personally didn't have that experience anywhere other than working with Apple," he said.

But disability discrimination in the workplace is not only prevalent, but it's also acceptable, according to half of Canadians. Half of the respondents in a 2015 survey by the Angus Reid Institute and the Rick Hansen Foundation noted that "it's understandable" if businesses feel it's risky to hire employees with disabilities.

Tech companies specifically have earned a reputation for being unwelcoming to those with disabilities and health issues. In 2015 The New York Times reported that multiple Amazon employees were given low-performance reviews or put on "performance improvement plans" after having cancer or significant surgeries. These plans are often a precursor to being fired.

There are 2.3 million people of all disability types in the Canadian labour force, according to Statistics Canada. More than 1 million of them have mobility issues.

Toronto employment lawyer Michael Cohen said Shaw's story is a familiar one. He has been involved with similar cases, some involving the tech industry. Some of those stories are "crushing."

"I've had a number of clients that have measured their - whether we want to say this is the right way to view things or not - self-worth largely by their contributions at the workplace," he explains. "When that's removed for something that is out of your control, beyond your means, you can struggle with that for a long time. It can be crushing to an individual. Some individuals require therapy, and sometimes they suffer a trauma that they never really get over."

Shaw's Claim also states that a senior manager told him at Apple that he wouldn't be promoted if he continued to be unhappy in his role. The manager then allegedly suggested the company might not be the right place for him.

Cohen said Apple would have to focus its efforts on convincing everyone that the installation of new doors would have led to added risk or some physical burden on the store's other employees if that's the argument they make.

"I also don't see how putting a handicapped symbol or button on a wall being aesthetically unpleasing. It's efficient to get around the obligation to accommodate, mainly if it's being raised that the remote is not working. If the accommodation that was once provided is repeatedly failing and there's another option that's used almost universally, I don't know how one can argue that's undue hardship.

"Often I find when I'm talking to a human resources department, I'll tell them the human rights code says you have to accommodate to the point of undue hardship...and in some instances we'll get into a disagreement about what constitutes undue hardship in that particular case."

Shaw's defence told the publication that they've received a notice of intent to defend and a statement of defence.

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Toronto man's lawsuit against Apple a reminder that disability discrimination in tech still happens, says employment lawyer | IT World Canada News

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Interacting with customers, fixing their devices, and getting a front-row seat to Apple's latest offerings were a regular occurrence for Robert Shaw, who, until last summer, worked for the tech giant since 2011. But now the 33-year-old is suing his former employer for lost wages and damages, alleging that Apple repeatedly refused to work on [...]

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Disability as Diversity

November 12, 2020

https://www.insidehighered.com/news/2020/11/12/could-disability-be-further-included-diversity-efforts

Colleges and universities are taking steps in their efforts to serve disabled students, but some supporters and scientists believe higher education has been slow to identify disability as an identity group or to include it in diversity and inclusion programs. College students with disabilities have lower graduation and retention rates than their peers who do not have disabilities.
It's very frustrurating to know that anyone might be rejected to finish higher education because they have disability.

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According to the Centers for Disease Control and Prevention, about 26 percent of people in the United States have a disability. That includes both visible disabilities, such as many mobility impairments, and hidden ones, such as psychosocial or emotional conditions.

But some research shows college students with disabilities have lower graduation and retention rates than their peers without disabilities.

In the past few years, some colleges and universities have started disability studies departments and programs. Others -- such as Syracuse University, Miami University of Ohio and the University of Illinois at Chicago -- have created disability cultural centers or affinity groups. But efforts such as those are still less than common. And although many statements from college presidents and administrations make clear they understand disability to be a part of diversity, scholars and activists say they still don't feel that higher education has accepted that disability is an axis of identity that can be celebrated.

Part of the larger problem, some activists and scholars say, is that disability is often framed as an individual biomedical condition and as a technical problem to be solved rather than as a group identity. Disability is often confined to offices that work through educational accommodations. A study of 23 California State University websites from 2012 to 2014 found that only one associated disability with diversity and inclusion.

"It's predominantly framed as a biomedical issue or a technical one in terms of legal compliance," said Lauren Shallish, a professor of special education, language and literacy at the College of New Jersey. "That framing forecloses any other discussion or experience or identity or social power."

Shallish's research and interviews with university leaders have found the "medicalized" framing of disability to be very prevalent in higher education.

"What I find is with diversity in higher ed, it's all very selectively inclusive," said Syreeta Nolan, a senior at the University of California, San Diego, and co-founder of Disability in Higher Ed. "The Black resource center is inclusive for Black people, the women's center is inclusive for women, the LGBTQ resource is inclusive for those who are LGBTQ themselves. But I don't see that intersectionality and I feel really weird and off when I try to talk about disability in those spaces."

Nolan's university's Strategic Plan for Inclusive Excellence does include people with disabilities, but looking at videos the university has created about the plan, she said, she doesn't see students or faculty with disabilities represented. She has participated in undergraduate research programs for historically underrepresented students, but those have been open to her because she is Black, not because she is disabled.

Though many colleges are engaging in much-needed efforts to diversify their faculty and student bodies, fewer are engaged in efforts to recruit and retain faculty and students with disabilities.

"If diversity actually valued disability, I could have people to look up to as a disabled undergraduate," said Nolan. "There would be such a world change if diversity included disability enough that there was more than 3.6 percent of tenured faculty that consider themselves disabled."

When disability is discussed in higher ed, it's often talked about in the context of educational accommodations that are required by law and allow students with disabilities to participate in class. Though accommodations are important and many activists and scholars are looking to improve the accommodation process, that focus can be limited, some say.

"Being a disabled student, I'm not just a disabled student in the classroom," Nolan said.

Though a human resources webpage at her university makes clear that the administration believes diversity includes disability, the content of public-facing sites at UCSD focuses almost exclusively on accommodations and accessibility, rather than disability as an identity.

Shallish, whose research has involved interviewing students with disabilities about their accommodations, said many are more concerned about other aspects of their college experience than about accommodations.

"[They said,] 'My real question is, does my roommate need to know I'm bipolar?' Or 'does my soccer team need to know I have a learning disability?'" she said.

A focus on educational accommodations can leave out an understanding of other barriers students with disabilities may face, said Harry Paul, an M.D.-Ph.D. student at Johns Hopkins University and communications director for the Alliance of Disabilities and Chronic Illnesses in Medicine.

"Accommodations are usually only available to people who have the means to get testing, to get some kind of doctor's note. Accommodations do not often take care of accommodating people off campus," he said. "You can have someone to help you get to class, but if you can't get your groceries, how can you stay in school?"

Many efforts to recruit or include students with disabilities could be easy, Paul said. Offices for diversity and inclusion could incorporate efforts at improving campus climate for students with disabilities. Administrations could hold listening sessions with disabled students and carry out their recommendations. They could bring disability scholars to talk on campus or add Braille to dining hall menus.

"If you recruit disabled students, are they going to feel like their disability is a burden that the school is complying with as it's the law?" he said. "Or are they going to feel like they are valued for their perspective?"

At UCSD, which Nolan attends, officials said disability is included in commitments to inclusivity, and the university is dedicated to moving beyond simple compliance with the law. "Compliance is the minimum," said Becky Petitt, vice chancellor for equity, diversity and inclusion at UCSD, via email. "Our commitment to scholars and professionals with disabilities involves intentionally facilitating access, active recruitment, thoughtful representation and engagement throughout all areas of university life, and the creation of accountability structures to ensure that we are faithful to our vision of being an institution where all students, faculty, and staff can thrive."

California State University, despite the 2014 study results suggesting that only one campus associated disability with diversity, has said that it does include disability in its programming.

"Efforts to advance diversity, equity and inclusion are definitely inclusive of a wide range of identities, including disability and its intersection with gender, race and ethnicity," said Luoluo Hong, associate vice chancellor for student affairs and enrollment management at Cal State, via email. "We are also dedicated to increasing educational access and accessibility for students with disabilities -- a responsibility which has been made especially salient during our current context, in which instruction on our campuses is predominantly online, remote or virtual. By policy and by practice, the CSU has dedicated time and resources to increase and improve the use of accessible technology. Finally, allegations of discrimination on the basis of disability are taken seriously and fully investigated."
Due for a Reckoning
For some scholars and activists, a shift in higher ed would require greater societal changes and acknowledgment of the intersections between disability and other identities. The disabled community is not a monolith, and how people experience a disability is filtered through their race and other characteristics, and vice versa. For example, both Black and disabled individuals are overrepresented among victims of police killings, creating unique implications for people who are both Black and disabled.

"What I would like to see is a fuller integration and examination of the intersectionality between race and disability. I think diversity is missing an entire aspect when the intersectionality of race and disability is ignored," said Denise Reid, a professor of education at Biola University and co-author of the study on Cal State.

Reid said some universities are making progress. Her university has made a deliberate effort to include disability in statements and conversations about diversity, she said, and has started conversations with faculty about the classroom experience.

But she's not sure that any effort in higher education to fully acknowledge the intersections between race, ethnicity and disability will be realized in her lifetime.

"We continue to investigate issues of race and ethnicity," she said. "However, I am hopeful that at some point the intersectionality of race and disability would just be part of the diversity conversation."

Shallish said that while she believes affinity groups and discussion would be beneficial for higher education, the issue runs deeper.

"Colleges and universities really need to reckon with their own entrenched history around ability supremacy. They've always prioritized the quote normal body or quote normal mind," she said. "Higher ed is defined by who it excludes."

Disability is often closely associated with the criminal justice system and racism, she said, as children of color are overrepresented in special education classes and often are pushed into juvenile justice programs. Colleges could do more work around abolishing current systems of incarceration and punishment.

"Higher ed could really do this work," she added. "So then it comes down to choice. Are you going to choose to do it or not?"

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Could disability be further included in diversity efforts?

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According to the Centers for Disease Control and Prevention, about 26 percent of people in the United States have a disability. That includes both visible disabilities, such as many mobility impairments, and hidden ones, such as psychosocial or emotional conditions. But some research shows college students with disabilities have lower graduation and retention rates than their peers without disabilities.

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Canada isn't ready to deal with influx of those disabled from COVID-19: advocates

January 19, 2021

https://www.ctvnews.ca/health/coronavirus/canada-isn-t-ready-to-deal-with-influx-of-those-disabled-from-covid-19-advocates-1.5273620
According to disability advocates, Canadian cities are not prepared for the people who will be temporarily or permanently disabled as a result of COVID-19. Breathing problems, fatigue-related mobility restrictions, and neurological and sleeping issues are all long-term symptoms.

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Canada isn't ready to deal with influx of those disabled from COVID-19: advocates

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Disability advocates are pushing for more paid sick days and universal basic income as they argue Canadian cities aren't ready for the influx of people temporarily or permanently disabled from COVID-19.

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Disability and the Media
5 January 2021
https://civilservice.blog.gov.uk/2021/01/05/disability-and-the-media/

The media has a long history of portraying people with disabilities as superheroes, victims, or medical miracles using stereotypes. And, in 2021, is it still practical – or is it time for a rethink?
I'm suprise that we still have sterytype about people with disability  even that we are in 2021. We need to raise awareness about this issue and clarify the fact by interacting with people with disability to know them more and avoid more predejuse.

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Some media, press and even charities portray disability as inspirational, negative, sad or even tragic. But how do people with disabilities really want to be viewed?
There is no shortage of famous role models with a disability such as Andrea Bocelli, TV news correspondent Frank Gardner, Kylie (a cancer survivor), David Beckham (who has Dyslexia) and Paralympian JJ Chalmers who recently lit up the floor on Strictly.

So why does the media have a long history in using stereotypes to portray people with disabilities - as superheroes, victims or medical miracles. And is it really realistic in 2021 - or is it time for a rethink?
Hero
Disability interests me because I have Cerebral Palsy and Epilepsy. I find myself becoming frustrated by the media portrayal of disability that relies on overly-simple stereotypes.
Barriers - physical vs invisible
The press portrayal of disability is sometimes met with frustration by non-able bodied people. The phrase "Inspiration Porn," coined by Australian disability activist Stella Young in 2012, relates to the way that disability is portrayed in the media. Stella used the word 'porn' deliberately, because just as in sex porn, Inspiration Porn objectifies or stereotypes one group of people for the satisfaction of another.

With Inspiration Porn, a disabled person is held up as a hero or inspirational for doing something that a non-disabled person takes for granted. Posters featuring slogans like: "The only disability is a negative attitude," or "You can achieve anything if you try," suggest that what holds a disabled person back, is merely their attitude.

The problem is, despite a person's positive attitude, it doesn't change the physical barriers they face. After all, a positive attitude towards going on holiday doesn't suddenly make the plane wheelchair accessible.
Positive portrayal
Other examples such as Channel 4's The Undateables is told from an able-bodied person's perspective, and demonstrate how the media views disabled people. They are often designed to make a disabled person appear sad and helpless.
Evolved
They provoke an "awww, isn't that sweet" reaction or pity from able-bodied viewers. Whilst they're meant to highlight a disabled person's achievement, they can be unintentionally patronising and promote the idea that disabled people need the help of non-disabled people to achieve something.

The trouble with Inspiration Porn is that it doesn't promote the positive side of disability, for example, it doesn't highlight the things the person has achieved, such as their ability to walk, attend mainstream school, university or get a job.
Civil Service
Media attitudes to disability have evolved for the better in just a decade, but there remains some way to go. For example, many disabled actors get frustrated when disabled characters are played by able-bodied actors.

Although soaps like Corrie and EastEnders feature disabled characters, which go some way to normalising disabilities, their storylines can be limited to cliched disability issues, rather than reflecting everyday issues including relationships and work.

Social model of disability
Talking of work, some civil servants with disabilities or long-term health conditions feel frustrated when colleagues don't recognise their different needs, or make adjustments that enable them to give their best at work.

Accessibility is about making sure your service can be used by as many people as possible.

Accessibility stems from the social model of disability which recognises the value that everybody can bring. This contrasts with the traditional Medical Model of Disability which states that a disabled person must be fixed or cured, and if that's not possible, key decisions about their life will be made by professionals including doctors and care workers.

Inspiration Porn drives the disability rights movements today, but while an individual has an impairment (visible or non-visible), it is society's attitude that dis-ables a person. This might be reflected through outdated architecture restricting access to buildings or transport.
Avoiding media manipulation?
Latest ONS figures show 53.6 per cent of people with a disability are in employment. However, those in work need to navigate more than transport and lack of ramps. Sometimes it can feel like a marathon just getting to work. Currently, just 11.7 per cent of Civil Servants have self-reported a disability.

Disabled people need more help getting to work. Many local Councils have invested millions introducing often underused cycle lanes. If just a fraction of this was invested in adding ramps to pavements, even the simplest journeys would be transformed for many disabled people.
Good to talk
Although the media can manipulate attitudes to disability, you can combat this, and the way you interact with disabled people is key.

The media portray a disabled person as 'inspirational' because they have a job or because they can even get out of bed, even though they're disabled. However, a disabled person really does just want to be accepted in the same light as their able-bodied friends.

The way you act around a disabled person is also important. Don't be scared to look at disabled people. Don't be nervous to talk to them. If you're worried about offending someone, ask them what language and words they don't like, or think are outdated. If you ask, they won't be offended.

Once you do that, then it is possible not to look at a disabled person as an inspiration. Instead, you will simply look at them as a normal person just living their life without letting their disability get in the way.

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Darren Cryer, Vice-Chair of the Civil Service Disability Network and Chair of his agency's Disabled Staff Network.

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Some media, press and even charities portray disability as inspirational, negative, sad or even tragic. But how do people with disabilities really want to be viewed? There is no shortage of famous role models with a disability such as Andrea Bocelli, TV news correspondent Frank Gardner, Kylie (a cancer survivor), David Beckham (who has Dyslexia) and Paralympian JJ Chalmers who recently lit up the floor on Strictly.

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An Untapped Talent Resource: People with Disabilities
February 25, 2021
https://www.forbes.com/sites/nicholaswyman/2021/02/25/an-untapped-talent-resource-people-with-disabilities/?sh=2f621e7f2fc0

This article reveals statics of a very low employment's rate of people with disabilities. While researches show the great benefits of hiring people with disabilities, most of the employers around the world are still overlooking them.
The media should contribute a bigger role in providing more information about the productivity of the people with disabilities, so they won't be sidelined because of unfounded beliefs.

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An Untapped Talent Resource: People With Disabilities

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One of the key factors in running a successful business is attracting and retaining talent. Whether hired from the outside or mentored from within, skilled and loyal employees are the backbone of any business. But when businesses strategize to expand their pool of skilled workers, they might be overlooking a key demographic: people with disabilities.

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Hollywood Is (Finally) Beginning to Rewrite Its Script on Disability Inclusion (Guest Column).
February 12, 2021

https://variety.com/2021/tv/columns/hollywood-disability-inclusion-nbcuniversal-1234907440/

Throughout history, Hollywood's representation of characters with disabilities has been anything but inspiring and prosocial. However, the entertainment industry is starting to write a new script that includes facts about people with disability.
According to study, just 5% of the top show characters with disabilities on television are played by actors with disabilities. Nonetheless, researchers released a new study earlier this year that showed that 22 percent of all characters with disabilities on network television are authentically portrayed by an actor with the same disability.
Finally, Hollywood starts to represent people with disability as an important part in our socieity that have the same right and responsibilities as anyone has.

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The entertainment community prides itself on taking the lead in advocating for social change; consider its threat to curtail film and television projects in Georgia due to their laws limiting women's access to abortion. Racial, gender, ethnic and cultural diversity are now acknowledged as worthy ambitions for popular entertainment.

By contrast, when it comes to Hollywood's portrayal of characters with disabilities, history has told anything but an uplifting and prosocial narrative. But the entertainment industry is beginning to write a new script on inclusion, a development that is strongly underscored by NBCUniversal's recent acceptance of the Ruderman Family Foundation guidelines on opening auditions to actors with disabilities.

In taking this landmark step towards inclusivity, the major media and entertainment company has committed to the notion that the more actors with disabilities audition, the more opportunities emerge for them to receive roles and, thus, the potential to receive leading roles.

This disruptive change marks the climax of a five-year, ongoing journey to motivate Hollywood to embrace disability as part of its definition of diversity. In 2016, our foundation's research showed that only 5 percent of top show characters with disabilities on television were played by actors with disabilities. Yet earlier this year, we published a new study which found that 22 percent of all characters with disabilities on network television are portrayed authentically by an actor with the same disability.

Nevertheless, the entertainment industry has a long way to go before fulfilling its true potential in the realm of inclusion. Opportunities for actors with disabilities continue to fall far short of accommodating the vast talent pool in the disability community. People with disabilities remain underrepresented, indicating that Hollywood has a limited view of what inclusion means. Seventy-eight percent of disability-based characters are still played by actors without that disability portrayed. With one-fifth of Americans living with a disability, one would think that the studios, networks and production companies would offer more robust representation of such a sizable slice of their potential viewing audience.

Why is inauthentic representation so problematic? It reinforces ongoing prejudices and discrimination, and since the entertainment industry impacts public opinion, it is reinforcing the continued segregation of people with disabilities in our society. Currently, there is tremendous stigma around disability, as illustrated by the 70 percent unemployment rate for people with disabilities.

The entertainment community could use its influence to shape public perception and eradicate our most pervasive inequalities. Through authentic representation, inclusive casting and more opportunities for people with disabilities both in front of the camera and behind it, the entertainment industry could change the public's view of disability and gain the support of the large population of people with disabilities. For a bottom-line focused industry, this should not be overlooked.

Despite a problematic track record, some television networks have moved the needle. Michael J. Fox - through his revelation of a Parkinson's disease diagnosis - redefined the narrative regarding the disease, first on his sitcom "The Michael J. Fox Show" and then in his recurring role in "The Good Wife." The ABC Family drama series "Switched at Birth" provided a forward-thinking mindset about representation of disability on television by casting actors who were deaf and used American Sign Language.

Further, Netflix's " Special," NBC's " This is Us," CBS's "NCIS: New Orleans" and ABC's "Gray's Anatomy" have all displayed authentic representation and inclusive casting practices in their most recent seasons. The actors themselves are also a central part of this movement toward greater inclusion. George Clooney, Joaquin Phoenix, Ed Norton, Bryan Cranston, Glenn Close, Eva Longoria, and other acclaimed actors signed an open letter circulated last December which called on studio, production, and network executives to pledge to make more inclusive casting decisions.

We are gratified that NBCUniversal has now committed to our guidelines on auditions. Having an industry leader take this bold stand gives us hope that others in the industry will join in striving to create more opportunities for people with disabilities in entertainment.

Society needs to consider disability as part of the inexorable push toward embracing diversity. The entertainment business can play an important role in advancing that objective by offering unique narratives and diverse characters. In the process, Hollywood could boost its profits and help make the world a more enlightened and inclusive place.
Jay Ruderman is a social activist, philanthropist and president of the Boston-based Ruderman Family Foundation, which champions the inclusion of people with disabilities. (Pictured: Netflix's "Special")

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Hollywood Is (Finally) Beginning to Rewrite Its Script on Disability Inclusion (Guest Column)

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The entertainment community prides itself on taking the lead in advocating for social change; consider its threat to curtail film and television projects in Georgia due to their laws limiting women's access to abortion. Racial, gender, ethnic and cultural diversity are now acknowledged as worthy ambitions for popular entertainment.

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5 Questions That Help Define The Outlines Of Disability Advocacy
February 28, 2021
https://www.forbes.com/sites/andrewpulrang/?sh=7719b8114e25

There is a significant amount of natural variation in the large and varied people with disability, as well as a wide range of views among the smaller core of dedicated disability advocates. However, certain ideologies, roles, and mindsets shape the community of people and institutions known commonly as "Disability Activism."

This is realy interesting question:  Is disability mainly a medical or a social experience?
Most people have both of them because their physical disability make them victom of discrimatation and stryotapes that lead to social disability.

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Andrew Pulrang's stories. Exploring disability practices, policy, politics, and culture.

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Registries of Disabled People Debated in Police Reform Talks
February 14, 2021

https://www.thestar.com/news/world/us/2021/02/14/registries-of-disabled-people-debated-in-police-reform-talks.html

This article discusses a proposal for a registry of people with disabilities as a way to alert police officers about someone's disability and avoid deadly use of force. Some people support this idea, while others think that it may be just setting things up for failure because of the bias and stigmatized views that people have of people with certain diagnoses. It is apparently very necessary for police officers to learn how to deal with people with a mental disability.

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New proposed assisted-dying law is 'racist,' says disability rights activist

February 8, 2021
https://www.ctvnews.ca/politics/new-proposed-assisted-dying-law-is-racist-says-disability-rights-activist-1.5300164

In this article I was very suprise that our system has a lack f support for those with disability. It also gave me information about Bill C-7 and how we should all help and advocate this issue. Bill C-7 eliminates the requirement that death be "reasonably foreseeable" in order to qualify for an assisted death, but it also creates two eligibility tracks, one for those who are near death and one for those who are not.

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OTTAWA -- Those who support expanding access to medical assistance in dying are doing so because they have not grappled with the consequences of medical racism, a disability activist said Monday before senators began debating the proposed legislation.

"Bill C-7 is anti-working class, racist and ableist," Sarah Jama of the Disability Justice Network of Ontario told a virtual news conference.

"(The bill) makes it more accessible for people with mental health disabilities to kill themselves as a form of treatment without making mental health supports free."

The 26-year-old community organizer from Hamilton, Ont., who is Black and uses a wheelchair, says racialized and Indigenous people in Canada who have been killed by the police should have been given mental health and disability-related support.

She said they also suffer deal with racism at hospitals when they seek medical assistance. Joyce Echaquan, a 37-year-old Atikamekw woman, died in a Joliette, Que. hospital last September after she filmed staff making derogatory comments about her.

"I don't want this in my future," she said.

Bill C-7 would eliminate the requirement that death be "reasonably foreseeable" to qualify for an assisted death, but it also sets up two eligibility tracks -- relaxing some rules for those who are near death and imposing stricter conditions for those who are not.

Jama, who appeared before the Senate legal and constitutional affairs committee that was studying the bill last week, questioned how widely Justice Minister David Lametti and others have consulted when it came to how the bill would affect people with disabilities.

Jama said legislators are listening to assisted-death advocacy groups she describes as predominantly representing wealthier white people, who she argues are pushing for expanded access to the procedure because they are afraid to live with disability.

She said meanwhile, they have been neglecting the voices of people with disabilities who are living in poverty, such as those living in homeless encampments in Hamilton.

"A lot of the people he consulted were upper middle-class white people, doctors and lawyers, and that's not representative of the disability community," she said.

Jama also raised concerns about a possible Senate amendment that would put a "sunset clause" on prohibiting assisted death for anyone suffering solely from mental illness, saying that it could be seen as a form of treatment, without making treatment free.

Krista Carr, the vice-president of Inclusion Canada, told the news conference Monday that the focus should be on suicide prevention.

"This bill has got to be stopped, or it will end the life of people," she said.

"It will end the life of ΓÇª way too many people with disabilities who feel they have no other options."

A letter from three United Nations watchdogs, including Gerard Quinn, the special rapporteur on the rights of persons with disabilities, sent to the Liberal government last week said C-7 would have a potentially discriminatory impact on persons with disabilities and older people who are not at the end of their lives.

If adopted, the bill will violate the right of persons with disabilities to live that's protected under the Universal Declaration of Human Rights, the letter said.

It would also "risk reinforcing (even unintentionally), ableist and ageist assumptions about the value or quality of life of persons with disabilities and older people with or without disabilities," the letter said.

This report by The Canadian Press was first published Feb. 8, 2021.

This story was produced with the financial assistance of the Facebook and Canadian Press News Fellowship.

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New proposed assisted-dying law is 'racist,' says disability rights activist

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OTTAWA -- Those who support expanding access to medical assistance in dying are doing so because they have not grappled with the consequences of medical racism, a disability activist said Monday before senators began debating the proposed legislation. "Bill C-7 is anti-working class, racist and ableist," Sarah Jama of the Disability Justice Network of Ontario told a virtual news conference.

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Usher syndrome, an unseen/hidden disability: a phenomenological study of adults across the lifespan living in England
Mar 17, 2021
https://www.tandfonline.com/doi/full/10.1080/09687599.2021.1889981

Usher syndrome is a rare, undiagnosed hereditary disorder that is the primary cause of inherited deafblindness in the United Kingdom. The aim of this descriptive phenomenological research was to achieve a deeper understanding of the experiences of being diagnosed with Usher syndrome and dealing with it from the viewpoints of adults living in England.
The results of the research include an understanding of what it is like for persons who have been diagnosed with and are dealing with an unknown illness, such as Usher syndrome, from the perspective of adults living in England.

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Abstract
Usher syndrome is a rare, unseen, inherited genetic disability and is a main cause of acquired deafblindness in the United Kingdom. The aim of this descriptive phenomenological study was to develop an understanding of the experiences of diagnosis and living with Usher syndrome, from the perspectives of adults living in England. The social model of disability and Erik Erikson's identity development theory provided theoretical perspectives pertinent to deafblindness/Usher syndrome. Individual interviews were conducted with 20 adults, using participant-led multi-sensory communication and interview methods. Communication methods included British sign language, deafblind manual, hands-on signing and clear speech. Interviews were conducted, face-to-face, telephone, email and Skype. Following thematic analysis, the findings revealed that this unseen sensory impairment affects everyday life and future plans, significantly impacting on individuals and their families, friendships, new and existing relationships. These findings are discussed from the perspective of the social model of disability and identity development theory.

Points of interest

The literature review demonstrates the limited previous research about living with Usher syndrome.

The study findings provide an understanding of what life is like for people who experience diagnosis of, and are living with, an unseen condition, such as Usher syndrome, from the perspective of adults living in England.

The study findings revealed that although Usher syndrome is not life threatening, the condition affects everyday life and future plans.

A diagnosis of Usher affects both new and existing relationships for people across their lifespan.

Acknowledgements

Firstly we would like to thank Emeritus Professor Joan Curzio for her valued and unique contribution to this research study. Secondly we would like to thank the people who participated in this research as without them sharing their experiences, understanding what it is like to be diagnosed and live with Usher syndrome would not have been possible. The views are those expressed of the authors.

Disclosure statement

No potential conflict of interest was reported by the authors.

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Usher syndrome, an unseen/hidden disability: a phenomenological study of adults across the lifespan living in England

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Abstract Usher syndrome is a rare, unseen, inherited genetic disability and is a main cause of acquired deafblindness in the United Kingdom. The aim of this descriptive phenomenological study was to develop an understanding of the experiences of diagnosis and living with Usher syndrome, from the perspectives of adults living in England.

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Disability Day of Mourning: Online vigils remember those killed by caregivers

March 1, 2021
https://www.ctvnews.ca/canada/disability-day-of-mourning-online-vigils-remember-those-killed-by-caregivers-1.5329342

The pandemic, many people in Canada and around the world observed International Disability Day of Mourning online, remembering disabled people who have been killed by relatives and caregivers.

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SASKATOON -- Instead of gathering at in-person vigils across the country, due to the pandemic many in Canada and around the world observed International Disability Day of Mourning online and remembered disabled people who've been killed by family and caregivers.

Hundreds of people have shared their thoughts and remembrances online using the hashtag DisabilityDayofMourning, including Canadian advocate Kim Sauder, who hosts the blog Crippled Scholar.

She told CTVNews.ca by phone on Monday that this day is when "disabled people all around the world commemorate and mourn disabled people who've been murdered."

This isn't a condemnation by the way. Creating that video was a month long process of remembrance and mourning.

I know full well how emotional the content is.
- Kim Sauder MACDS (@crippledscholar) March 1, 2021

U.S. blogger and disability rights advocate Imani Barbarin said these deaths are far too often dismissed or not taken seriously and that is why she and others are emboldened to "hold fast" against those who try to erase the experiences of disabled people today.

There are no definitive national statistics in Canada on the number of disabled people killed by their caregivers or someone they trusted.

But since mid-2014, the U.S.-based Disability Day of Mourning website has been cataloging the deaths from around the world. It contains descriptions of who the victims were, as well as associated news stories, court filings or obituaries.

The website's recorded cases date back to 1982 and those from Canada include the death of Inuk father Levi Illingayuk, whose son was convicted of manslaughter in 2018; Newfoundland woman Ryanna Grywacheski, who was killed in 2017; and Ontario woman Terri-Lynn Thompson, who was killed in 2019.

The website notes more than 60 people with disabilities in Canada have been killed since at least 1992, but it states that many deaths go unreported.

"A lot more needs to be done to recognize the realities of living while disabled and to ameliorate the horrific gaps when it comes to abuse so that disabled people can live more equally," said Sauder, who is unaffiliated with the website.

ONLINE VIGILS, READING OF THE VICTIMS' NAMES THIS YEAR

Annual vigils -- whose origins can be traced back to 2012 in the U.S. -- are typically held in major cities across the country, including Toronto and in Burnaby, B.C,

But this year, instead of attending a gathering, Sauder took to her YouTube page to read out loud the names of 1,510 people who've died since the 1970s.

"I felt that it was really important to still have something to put out that put all the names out there," she said.

Last year, at a vigil in Burnaby, B.C., organizers of advocacy group Autistics United Canada read 61 names from across the country, with some deaths dating back to the 1940s. But due to the pandemic, the Vancouver-based group held a virtual ceremony of remembrance over Zoom this year, as a way to " honour and remember " those who were killed.

Organizer Vivian Ly told CTVNews.ca in a phone interview that media and non-disabled folks far too often sympathize with the murderers rather than the victims, with some still using outdated terms such as "mercy killings."

Ly said the pandemic has forced people to feel the "weight of all the lives that we've lost due to the pandemic, especially disabled lives. People who were disproportionately impacted by government policies regarding critical care, triage protocols, and financial supports."

Trans disability advocate, Corin de Freitas, tweeted a similar sentiment in their own observance of the day. De Freitas, who uses the pronoun "they" said this year they were "thinking also about caregiving in the context of community care and the wholesale abandonment of disabled [people] in this pandemic."

Today I am mourning shattered trust knowing that most nondisabled ppl privilege their boredom, convenience, and horniness over our lives.

I am thinking about how we see these priorities reflected in institutional settings, vaccine distribution, triage protocols, etc...
- The Tweedy Mutant ♿ (@the_tweedy) March 1, 2021

Sarah Jama, the founder of the Disability Justice Network of Ontario, told CTVNews.ca over Twitter that her group co-hosted an in-person, physically distanced vigil in downtown Ottawa on Monday. She said her grief also extends to disabled folks -- and those with mental illness -- who've died in government-run institutions or at the hands of police.

"We grieve for the disabled comrades who died in long-term care homes because their lives mattered less to decision makers."

Thinking about big sis @ingwongward on this Disability Day of Mourning. Until her last days she was talking about the need for better palliative care supports in this country. I wish I could've asked her for advice on #BillC7 and 1000 other things.
- Sarah Jama (@SarahJama_) March 1, 2021

Disability advocate Sauder said the untimely deaths of disabled people have been weighing on her mind since she was extremely young. She vividly remembers the 1993 news coverage of Canadian farmer Robert Latimer, who was convicted of second-degree murder in the death of his daughter Tracy, who had cerebral palsy.

At the time, the murder sparked an ongoing debate on the ethics of euthanasia, with a 1999 Ipsos poll finding that 73 per cent of Canadians at the time believed he acted out of compassion.

"There's a lot of empathy for parents. The assumption is that they are driven to it or that the children were 'obviously' suffering," said Sauder, who urged people to use the Disability Day of Mourning and beyond to evaluate whether they consciously or unconsciously allow those sentiments to still linger today.

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File photo of someone in a wheelchair at a balcony. (Pexels/Alexandre Saraiva Carniato)

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Disability Day of Mourning: Online vigils remember those killed by caregivers

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SASKATOON -- Instead of gathering at in-person vigils across the country, due to the pandemic many in Canada and around the world observed International Disability Day of Mourning online and remembered disabled people who've been killed by family and caregivers.

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Post-Secondary Students with Permanent Disabilities Receive COVID-19 Response Grant

March 16, 2021
https://novascotia.ca/news/release/?id=20210316008
Many people in Canada and around the world observed International Disability Day of Mourning online, remembering disabled people who have been killed by relatives and caregivers.The government understands that students with long-term disabilities have unique educational and equipment needs.

The $800 one-time grant would help ensure that everyone has equal access to training and other educational opportunities, demonstrating the government's dedication to inclusion and opportunity.

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The Rankin Government knows that many Nova Scotians have been impacted by the COVID-19 pandemic, including post-secondary students and, in particular, those students with disabilities. That's why it is introducing the COVID-19 Accessibility Grant. This grant will help about 3,000 Nova Scotia post-secondary students with permanent disabilities by providing them $800 in financial assistance.

This government recognizes that students with permanent disabilities have exceptional education-related and equipment requirements. The one-time $800 grant will help ensure equity of access to training and other educational opportunities, reflecting the government's commitment to inclusivity and opportunity.

"We want all our post-secondary students to be successful and to have equal access to education and training," said Labour and Advanced Education Minister Lena Metlege Diab. "This grant will provide extra funding support and help students with disabilities address new costs arising from remote-learning and other learning environment changes."

Students with permanent disabilities require individualized supports depending on their disability and program of study. This may include ergonomic equipment, installation, training and tech support for assistive technology and specialized software programs, computer upgrades, ipads, second monitors, cell phones with Wi-Fi, extra note-taking and tutoring.

The grants will be distributed to students starting this month. Eligible students do not need to apply.

Quotes:

During the pandemic, students with permanent disabilities have faced specific barriers, exacerbated by online learning. Without on-campus support, students with disabilities have had to adapt, often at a cost. This new grant helps recognize the inequity faced by these students, while assisting financially. Clancy McDaniel, executive director, Students Nova Scotia

Quick Facts:

this is a one-time grant to assist with costs related to the pandemic and is being funded by the Government of Canada through the Work Force Development Agreement

in addition to the grant, funds will also be allocated to an annual $100,000 University Inclusion Education Tuition Grant and IT enhancements that will improve accessibility for students with disabilities ($200,000 for 2020-21 and $1.05 million for 2021-22)

eligible students must have provided medical documentation verifying they have a permanent disability and be receiving support through Post-Secondary Accessibility Services

the total cost for the COVID-19 Accessibility Grant will be about $2.6 million

last December government announced a one-time COVID-19 Response Grant of $750 for all recipients of Nova Scotia Student Assistance in the 2020-21 academic year

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Post-Secondary Students with Permanent Disabilities Receive COVID-19 Response Grant

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The Rankin Government knows that many Nova Scotians have been impacted by the COVID-19 pandemic, including post-secondary students and, in particular, those students with disabilities. That's why it is introducing the COVID-19 Accessibility Grant. This grant will help about 3,000 Nova Scotia post-secondary students with permanent disabilities by providing them $800 in financial assistance.

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National Program helping Moncton Youth with Disabilities Find Work
March 18, 2021

https://globalnews.ca/news/7704761/national-program-help-canadian-youth-disabilities-work/

A national program encourages more Moncton business to hire people with disabilities and overcome hurdles stood between disabilities and employments. Studies show that employees with disabilities had an equal or better performance than their coworkers without disabilities. People with disabilities should have equal chances in work market.

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A national program that helps prepare young people with disabilities for the workforce is making strides in encouraging more Moncton businesses to hire inclusively.

The Canadian Council on Rehabilitation and Work's Youth the Future program is a work readiness program for people aged 15 to 30, said April MacAleese Jay, the program's employment facilitator.

"We provide a lot of training when it comes to what it means to become work-ready and how to check the schedule and show up on time and your hygiene and dressing for the part," said MacAleese Jay.

Since 2017, the program has served 97 clients in Greater Moncton with either employment training or in seeking and finding a job. The Moncton program has secured positions for 64 of its members to date and has supported six members in returning to school as they plan out their future career goals.

The program, which is offered in Atlantic Canada, Ontario and Quebec, MacAleese Jay said, will subsidize 75 per cent of wages for 14 weeks and will work with employers to educate them on how to make appropriate accommodations for employees who identify as having a disability.

"Making sure that the employer sees the person first and not the disability and the barrier," said MacAleese Jay.

According to Statistics Canada figures from 2018, 26.7 per cent of New Brunswickers have a disability, which is the second-highest rate in the country.

MacAleese Jay said that some employers have been reluctant to hire inclusively, some viewing accomodating people's needs as an employment hurdle.

But the President's Group, an inclusive employment advocacy group in B.C., says on its website that studies show that employees with a disability had a "72% higher staff retention rate, 86% had equivalent or better attendance than their peers, (and) 90% performed equal or better than their coworkers without disabilities."

"I think any employer who is willing to hire inclusively and look at the person first is going to see productivity they are going to see commitment," said MacAleese Jay.

She said finding potential employers has been a challenge, especially amid COVID-19 as competition for jobs is stiff.

But Brandon Dillon of Moncton, 20, who is currently enrolled in the program, said he has "gotten hope" for the future and was able to secure a job working for a moving company.

"Just seeing that I can get a job just made me really happy."

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the canadian council on rehabilitation and work

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National program helping Moncton youth with disabilities find work

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A national program that helps prepare young people with disabilities for the workforce is making strides in encouraging more Moncton businesses to hire inclusively. The Canadian Council on Rehabilitation and Work's Youth the Future program is a work readiness program for people aged 15 to 30, said April MacAleese Jay, the program's employment facilitator.

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Brandon man wants Manitoba to prioritize those with Down syndrome for Covid-19 vaccine
March 2, 2021
https://globalnews.ca/news/7672276/manitoba-covid-19-vaccine-down-syndrome/

This article raises the concern about the special needs of the people with disabilities during the pandemic time of Covid-19 and calls on the government to prioritize them on the vaccine list. People with disabilities are more vulnerable to Covid-19 than others due to their genetic condition.

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Brandon man wants Manitoba to prioritize those with Down syndrome for COVID-19 vaccine

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A Brandon man is filing a human rights complaint about how Manitobans with disabilities are getting overlooked when it comes to the distribution of COVID-19 vaccines. Bruce Strang told Global News that he got involved in the issue when his requests to have his teenage son, Sean, prioritized due to his health issues weren't taken seriously.

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COVID-19 law sparks dialogue on nursing home alternatives

March 24, 2021

https://apnews.com/article/medicaid-legislation-coronavirus-pandemic-nursing-homes-0bd696ffa5a2b6b1235348d09572c3b5
Federal government mandates that state Medicaid systems provide nursing home care for low-income residents, the same cannot be said for home and community-based support services. All states provide these programs on a voluntary basis, but the variety varies greatly. Home and community care is typically less than half the cost of hospital care, but there is disagreement about whether it avoids or merely delays the onset of dementia.

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WASHINGTON (AP) - With the memory of the pandemic's toll in nursing homes still raw, the COVID-19 relief law is offering states a generous funding boost for home- and community-based care as an alternative to institutionalizing disabled people.

Advocates hope the estimated $12.7 billion will accelerate what has been a steady shift to supporting elderly and disabled people and their overwhelmed families in everyday settings. But the money for state Medicaid programs, long in coming, will only be available over four calendar quarters this year and next. That's raising concerns it will have just fleeting impact, and prompting calls for permanent legislation.

"What we really want is that when our loved ones need support, we are going to be able reach out and get that support without another battle," said Maura Sullivan of Lexington, Massachusetts, who has two sons with autism. "We don't want to have our kids cut out just because the potholes need to be fixed in the states."

Sullivan, an advocate in her state for the disabled, has an older son, Neil, with more severe autism who is in a residential facility. But she believes her younger son, Tyler, now 17, could one day hold down a job, if he had help. Autism is a developmental disability that leads to social, communication and behavioral challenges. There's a spectrum of severity, and while some people with autism need a lot of help with daily basics, others are intellectually gifted.

Medicaid was originally intended as a federal-state health program for the poor and severely disabled. As it has grown to cover about 1 in 5 Americans, it's also become the nation's default long-term care program, although qualifying is often an arduous process.

While the federal government requires state Medicaid programs to cover nursing home care for low-income people, that's not the case for home- and community-based support services. All states do offer such services voluntarily, but the scope varies widely. Home and community care usually costs less than half as much as institutional care, although there's debate on whether it prevents or merely delays people from going into a nursing home.

The coronavirus pandemic starkly exposed the vulnerability of nursing home residents. Only about 1% of the U.S. population lives in long-term care facilities, but they accounted for about one-third of COVID-19 deaths as of early March, according to the COVID Tracking Project.

"Clearly COVID demonstrated that living in an institution puts you at higher risk for infection and deaths," said Martha Roherty, executive director of Advancing States, which represents state agencies on aging and disability. "If we want seniors and people with disabilities to have a higher quality of live, that is not going to be in a nursing facility."

A poll by The Associated Press-NORC Center for Public Affairs Research last year found that 60% percent of Americans would be very concerned if an aging friend or family member needed long-term care in a nursing home during the pandemic, and another 27% would be moderately concerned.

The billions in the COVID-19 law represent the first new federal money for home- and community-based services since the Obama-era Affordable Care Act more than 10 years ago, said MaryBeth Musumeci of the nonpartisan Kaiser Family Foundation.

"I expect that that this is going to be first step toward additional focus on strengthening Medicaid home- and community-based services and figuring out how to help states to serve more people in the community," said Musumeci, an expert on Medicaid and the disabled.

In Congress, Rep. Debbie Dingell, D-Mich., and other Democratic lawmakers recently unveiled proposed legislation to make such services a mandatory Medicaid benefit, as well as set basic standards and requirements.

"There are so many people, when they get older, they are forced to go into institutions," said Dingell. "People should not have to go into a long-term care setting where they are in greater danger of contracting disease and they are more isolated."

The chairman of the House committee that oversees Medicaid, Rep. Frank Pallone, D-N.J., says reforming long-term care, including expanding access to home and community-based care options, "are top priorities of mine."

States are likely to push back hard against any federal effort to create a new mandatory Medicaid benefit. There's also some skepticism about the money in the COVID-19 relief law, if taking it means states would be left holding the bag when the temporary federal funding ends.

"This country needs and deserves a thoughtful, humane long-term care policy, and the bedrock of that must be access to these services from anywhere but Medicaid," said Matt Salo, executive director of the National Association of Medicaid Directors, addressing Dingell's proposed legislation.

For now, states and advocates for the disabled are awaiting guidance from the federal Centers for Medicare and Medicaid Services on how the money in the COVID-19 law can be spent. The agency said that's coming soon. Examples of potential uses include reducing waiting lists, raising the pay of support workers, or investing in technology to improve the delivery of services.

Sullivan, the Massachusetts mother whose two sons have autism, said they were both home during much of the pandemic year. She lobbies for her state chapter of The Arc, a nonprofit that advocates on behalf people with intellectual and developmental disabilities.

Although her older son, Neil, has since returned to his residential facility, Sullivan said being cut off from other people was harmful for younger son Tyler.

"The isolation was really bad; he was at a point in his development where social connections were becoming really important," she said. "Honestly, this year we've seen regression, and we're looking to pump him back up to where he was before, with increased services and supports."

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COVID-19 law sparks dialogue on nursing home alternatives

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WASHINGTON (AP) - With the memory of the pandemic's toll in nursing homes still raw, the COVID-19 relief law is offering states a generous funding boost for home- and community-based care as an alternative to institutionalizing disabled people.