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Self-Expression Among the Disabled

“We all have our own unique quirks and traits,” writes Courtney E. Ackerman MSc, she goes on to say: “we all have our own preferences and style for sharing pieces of ourselves with those around us.”

Self-expression for the disabled is just as important and can be just as creative and beautiful as it is for society in general. Social and emotional outlets are needed due to the psychological stereotyping of disabilities and the desire to be so-called ‘normal’. Self-expression provides the opportunity to experience a feeling of cultural normality.

Self-expression is something we are all aware of, it is at the core of every human being,and it is important not only for adults but children as well to have the freedom to self-express. The importance of self-expression should not be underestimated in society. Self-expression can take many forms. People may express themselves through words, facial expressions, body positions, movements, clothing, actions, and the arts.

In her article for positivepsychology.com Courtney Ackerman remarks: “How we share and express ourselves to others forms the basis of our personality, as understood by everyone but us, and sets the tone for our entire lives. It’s a vital aspect of life to pay attention to, especially if you want to feel more understood and more in tune with the people you care about.”

Furthermore, Ackerman goes on to comment: “The way that we share ourselves is known as self-expression, and it turns out there are a lot of ways to do it.”

As we celebrate the 30th anniversary of the signing into law the Americans with Disabilities Act (ADA), it seems like the perfect opportunity to point out that the term disabled is in so many cases misleading. It seems appropriate to appreciate that all people are equipped with varying abilities, strengths and weaknesses, and hidden talents which are often used for self-expression.

Before the ADA people living with disabilities were often minimized or ignored. There was little value placed on self-expression by the disabled. In the past 30 years, society has slowly begun to appreciate the feeling and ideas that were previously suppressed.

The Arts of the Past

It was not that long ago in human history that a person with a disability had few possibilities of self-expression. The few opportunities available were limited to that of being a sideshow ‘freak’ such as in the case of Charles B. Tripp. His talents ad skills may have been overlooked if not for P.T. Barnum and Ringling Brothers.

Throughout history, there have been numerous, famous, talented people with a disability who accomplished amazing works in all forms of the Arts. Below is a small list of those exceptional people:

  • Michelangelo: according to the Passionate People Team: “Experts disagree whether Michelangelo had gout or osteoarthritis. But either way, the famous painter and sculptor recorded that he had significant trouble using his hands.”

It has been claimed that the artist suffered from chronic kidney stones which would point to gout, but regardless, the artist continued his work with hammer and chisel as well as paints until he was nearly 89 years old.

  • Vincent Van Gogh: was believed to be bipolar and affected with bouts of depression. Of Van Gogh, The Passionate People Staff report: “had temporal lobe epilepsy” they continue report: “It is believed that his physician, Dr. Gachet, prescribed digitalis to treat his seizures. One common side effect of this medicine is seeing yellow spots. Some historians wonder if this is why Van Gogh seemed to love to use the color yellow in his art.” Additionally, it is believed that Van Gogh was most productive during his manic periods.

The talents in the arts are not limited just to visual arts, music has its share of composers and musicians who refused to allow physical barriers to hold them back.

  • Ludwig van Beethoven: Although he lived more than a century ago, the music he wrote still resonates today. The impact this German composer has had a lasting impact on classical music. Lee Standberry notes: “In the 1790s, Beethoven slowly began to lose his hearing, but continued to play, compose, and conduct. Eventually, he became entirely deaf, yet he didn’t let his disability stop him.”
  • Stevie Wonder and Ray Charles: Switching to more contemporary music, Stevie Wonder and Ray Charles are considered legends in the world of music. Wonder was born blind, as a singer, songwriter, instrumentalist, and producer he first signed with Motown Records at the age of 11.   
  • Since that time Standberry reports: “Wonder has been able to produce more than 30 top ten hits in the U.S. Ray Charles, Standberry tells: “plays piano, sings, and acts, all while being blind. Though not born blind, his eyesight started to deteriorate around age five, and he was completely blind when he turned seven.” Like Wonder, Charles also won several Grammy Awards and both men have won Life Time Achievement Awards and both were inducted into the Rock and Roll Hall of Fame.        

Film and TV Performers

The performance arts have a remarkable list of diverse people who have overcome a disability and have gone on to successful careers and have entertained and amazed us for years. On stage and screen, though dance, portraying real and imaginary characters, these people have made their talent overshadow their challenges. It is impossible to do fair justice to these showmen but it is hoped some of the links supplied will shine a light on the skills they possess.

https://www.imdb.com/list/ls002311249/https://disabilityhorizons.com/2017/12/top-10-disabled-celebrities-across-world

Performance Arts (Dance and Theater)

While growing up the farthest thing on my radar was an interest in the Arts especially dance and performing arts. Now as an adult I have gained an appreciation for visual arts, with interest in the works of people such as Vincent Van Gogh, Paul Rubens, Childe Hassam, William Merritt Chase, and other painters, but Performance Arts has never been in my field of vision.  Yet through the studies of disabilities, the possibilities for self-expression offered by dance and stage performances are intriguing.

At first glance, there was a great feeling of admiration for the athleticism of the performers, the grace, and the flow of the movements. Watching You-Tube performances by Anjali Dance Company and Axis Dance Company one can easily become lost in the presentation and forgetful of the disabilities and, most importantly, the messages being conveyed through the performance.  Performance art presented by the disabled portrays messages that are subject to the interpretations of the audience.

Axis Dance Company performance
retrieved from: https://www.artsedconnect.org/educator/axis-dance-company/

Personally, one of the more captivating performances comes from the National Theater of the Deaf or the Deaf West Theater. It’s hard to imagine a deaf theater performance, but the combination of hand movement, facial expressions, and movements are magical together. Through this performance of beauty and grace, there may not be a better example of self-expression.

Visual Art

The need for humans of all types to have an opportunity to self-express is part of our makeup. In the area of visual arts, maybe best exampled by considering Henri Matisse, who is considered by many to be one of the greatest impressionist artists. His desire for self-expression continued even when ill health prevented him from painting, in his final years he turned to paper cutting and collages and creating some of his most important works.

Stigmas and feelings of isolation have often been a constant companion for those living with a disability. Marija Bern of the Bored Panda web site staff wrote: “Around 10 percent of the total world’s population or roughly 650 million people, live with a disability according to Disability Statistics’ annual report.”

Lisa Fittipaldi
Disability: Visually Impaired
Lisa not only learned to paint after losing her sight,
she wrote a book about it. Her inspiring use of color
and her ability to tell which color she is using just by feeling
the texture of the paint are just two remarkable facets of
her story.
retrieved from: https://www.webdesignerdepot.com

Bern continues saying: “From artists painting with their mouths to blind photographers – these disabled people are truly an inspiration. Living with conditions most can’t imagine, they often use this art as a way to communicate with the world.” The human need for self-expression becomes evident once one explores these works.

As mainstreaming increases, so to will come acceptance increase, and the desensitizing of cultures as they become increasingly familiar with people who are disabled. With each new generation as the previous one fades away, tolerance is increasing. Baby boomers are far more tolerant than their parents. The baby boomer’s children even more so, the acceptance and recognition of the abilities of the disabled and is far more acceptable now than for those of the World War II era.

It may be hard to believe that some of the most talented people deal with disabilities in their lives every day, living with and adjusting to situations the rest cannot imagine living with, yet have taken their talents and artistries and put them to use as a means of self-expression and to communicate feelings with the world.

With some guidance and encouragement and using a variety of methods, the results of these efforts are magnificent. Many of the artists paint with their hands, but others with their mouths or their feet. Many are blind or suffer from mental disabilities yet the drive for self-expression produces some of the most beautiful and intricate work anyone can imagine.

As the WebdesignerDepot comments on their website: “Their achievements are arguably epic in the face of the adversity that they face.

We hope that the artists in this post inspire your designs and make you look at adversity in any field as a surmountable obstacle.”

Works Cited:

Bern, Marija. (2020). We Can’t Believe What These 37 Artists Can Do Despite Their Disabilities.
Retrieved from:https://www.boredpanda.com/

Passionate People Staff. (2020). 5 World-Famous Artists That Had Disabilities. Retrieved from: https://www.passionatepeople.invacare.eu.com/5-world-famous-artists-disabilities/ 06/29/20

Standberry, Lee. (July 10, 2009). Top 10 Disabled Musicians. Retrieved from: https://www.toptenz.net/top-10-disabled-musicians.php 07/01/20

Ackerman, Courtney, E, MSc. (2020) What is Self-Expression and How to Foster It? (20 Activities + Examples). Retrieved from: https://positivepsychology.com/self-expression/

Additional Information:

http://www.disabledartistsguild.com
https://www.webdesignerdepot.com/2010/03/the-amazing-art-of-disabled-artists/
http://www.anjali.co.uk/
https://www.disabilityartsinternational.org/artists/profiles/anjali-dance-company/
https://www.axisdance.org/
https://www.thehumanarvels.com/charles-tripp-the-armless-wonder/
https://news.uga.edu/hands-in-theater-for-deaf-hearing/

Prejudice/Ableism: Too old to work or just not capable.

Ableism is defined as, “discrimination in favor of able-bodied people.” Ableism is most often associated with disabilities, but it can also be applied to people who we call seniors in our society.

One question which may come to mind is, who set the retirement age at 65? The answer may be somewhat of a surprise.  On his blog, Tim Kastelle posted, “The age of 65 was originally selected as the time for retirement by the “Iron Chancellor,” Otto von Bismark of Germany when he introduced a social security system to appeal to the German working class and combat the power of the Socialist Party in Germany during the late 1800s. Somewhat cynically, Bismark knew that the program would cost little because the average German worker never reached 65, and many of those who did, lived only a few years beyond that age. When the United States finally passed a social security law in 1935 (more than 55 years after the conservative German chancellor introduced it in Germany), the average life expectancy in America was only 61.7 years.”  Today, after more than 80 years, the department of social security calculates,

“A man reaching age 65 today can expect to live, on average, until age 84.3.

A woman turning age 65 today can expect to live, on average, until age 86.6.”

Many of us spend considerable time planning for retirement at 65, but for many, it may not turn out to be all we expected.  People come out of retirement for many reasons and in an article on The Street web site Kathryn Tuggle lists five of the most common:

  1. Pursue an encore career. An encore career allows retirees to pursue a profession that may boost their financial stability while also providing personal fulfillment.
  2. Have a purpose. A recent Encore.org study revealed more than 4.5 million people between the ages of 50 and 70 are involved in encore careers. Popular sectors for these careers include public service, education, or other opportunities that allow people to give back.  
  3. Stay physically active. Very few people plan to retire and just do nothing. Oftentimes people who leave the workforce find that they not only miss the routine of having somewhere to be every morning but also crave the physical exercise associated with climbing stairs, walking around the office, or traveling to meetings and conferences.
  4. Understand your financial need.  Some retirees may not need additional funds for themselves but may go back to work due to unexpected family expenses.
  5. Keep the mind sharp. Doctors recommend that retirees keep their minds active to avoid premature memory loss. According to the Center on Longevity at Stanford University, work plays a key role in keeping the mind functioning optimally.”
Jimmy Carter working with
Habitat for Humanity

So does being past retirement age mean we have no longer have value in the workplace? Maybe we should be asking that question of former President Jimmy Carter, who, now in his 90’s, is still active in “Habitat for Humanity,” while fighting cancer, and if that wasn’t enough still remains politically active. Or maybe we might want to consider the late professor Stephen Hawking who passed away at 72 and despite his age and a debilitating illness, continued teaching as well as working on his theories relating to the universe. These are just two famous examples of why hiring practices need revision. No one knows how much talent and knowledge has been lost due to the practice of ableism. These underutilized workers are a potentially untapped resource of talent. 

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Age is not the only concern

The US Dept. of labor posted the following information relating the employment rates for people with a disability:

April 2018 Disability Employment Statistics
Ages 16 years and over

Labor Force Participation

  • People with disabilities: 20.9%
  • People without disabilities: 68.3%

Unemployment Rate

  • People with disabilities: 8.0%
  • People without disabilities: 3.5%
Stephen Hawking at his office at the department of applied mathematics and theoretical physics at Cambridge University in 2005. Photograph: Murdo Macleod/The Guardian

It is important to recognize that what is missing in these statistics is the number of talented individuals with a disability who have simply given up trying to find work or are forced to rely on family members to subsidize what they receive from social programs. In his book, Hidden Talent, Mark Lengnick-Hall wrote: “Most people with disabilities want to work. Sixty-seven percent of people with disabilities who are unemployed say they prefer to be working” (p. 3)

On their website, the Pew Research Center states: “As the year 2011 began on Jan. 1, the oldest members of the Baby Boom generation celebrated their 65th birthday. In fact, on that day, today, and for every day for the next 19 years, 10,000 baby boomers will reach age 65. The aging of this huge cohort of Americans (26% of the total U.S. population are Baby Boomers) will dramatically change the composition of the country. Currently, just 13% of Americans are ages 65 and older. By 2030, when all members of the Baby Boom generation have reached that age, fully 18% of the nation will be at least that age, according to Pew Research Center population projections. But don’t tell Baby Boomers that they are old. The typical Boomer believes that old age does not begin until age 72”.

What is interesting is that one of the concerns with this mass retirement is the possibility of a business Brain Drain. By Brain Drain, we are referring to the loss of those skilled employees who have experience and have been successful at their jobs. They are a potential resource.

When exploring the potential of employees, perhaps one great loss to the workforce and society is the 60%+ people with disabilities who are unemployed.  Approximately 1 in 5 Americans or 20% of the population has a disability. Lengnick-Hall states: “72% of working people with disabilities have high school diplomas or a higher education. However, of those with a college degree, 55% are unemployed, compared to 14% of college-educated people without disabilities.”

Why don’t more employers hire people with disabilities? Some of the reasons are based on ignorance, some are based on stereotyping or prejudice. Many of the reasons date back to the industrial revolution where the value was placed on physical abilities. The age of the assembly line brought long hours of strenuous work, and any sort of industrial accident resulting in a disability went unforgiven.

There are many negative attitudes or misunderstandings about hiring a person with a disability such as:

  • Many employers believe that hiring people with disabilities will result in higher costs in health insurance claims.
  • Employees with disabilities have more accidents at work.
  • Employees with disabilities are less productive compared to non-disabled employees.
  • There is an increase in sick time and a lack of reliability among employees with disabilities.
  • The cost of associated complying with accessibilities and job accommodations out weights the value of hiring such employees.

Many companies use the strategy of ignoring applicants with disabilities in favor of the non-disabled applicants. Lengnick-Hall warns: ”Of course the potential costs of such a strategy include getting sued for discrimination, loss of reputation in the community resulting in bad publicity, and perhaps loss of customers with disabilities who find other companies with whom to do business”. (p. 5)

The Jobs Accommodation Network (JAN) has been involved in ongoing research for many years and; “the study results consistently showed that the benefits employers receive from making workplace accommodations far outweigh the low cost. Employers reported that providing accommodations resulted in such benefits as retaining valuable employees, improving productivity and morale, reducing workers’ compensation and training costs, and improving company diversity. These benefits were obtained with little investment. The employers in the study reported that a high percentage (58%) of accommodations cost absolutely nothing to make ($0), while the rest of the accommodations made had a typically cost only $500”.

This all comes down to, in many cases, business just focusing on the cost of workplace accommodations, which is shown to be low cost, but have high returns. There are organizations out there like JAN that help employers with accommodation concerns and remind business owners that the ADA prohibits discrimination based on assumptions, stereotypes, or any myths or presumption an employer may have about hiring people with disabilities. Business also should be aware the EEOC is targeting these cases.

Inclusiveness

Before we can begin to have equal opportunity in employment it is important to realize that currently little is being done to cause effective change. The current efforts have done little to bring about change in attitudes and hiring practices. As reported by in Ability Magazine: “Numeric goals being set by companies to hire so-many of this type of person, and so-many of another type, work only to create a foundation for future failure”.

It may seem like a simple matter to hire people from a minority group, but it is a different matter to treat them the same as you would any other employee. The answer to this dilemma is to create an environment of inclusiveness, which is to include many different types of people and treating them all fairly and equally.

Working towards inclusiveness is not necessarily an easy task for a business to accomplish. Changing begins with management, they set the tone with trust and respect. From the start, business owners and managers must be ensured they want to create an inclusive environment for the right reasons. If the goal is only to appear as a positive and progressive business or to meet quotas, so as not to find yourself in court with the EEOC, failure will be the result.

However, referring back to the Ability magazine article: “if you want to truly be a part of a positive future, to benefit from the life experience and skills of all people, regardless of sex, gender or whether they have a disability, then your company will reap the benefits. Culture is key. To reach true inclusiveness, work toward cultural change to find the path to truly combat discrimination.”

The simplest step is to hire people with disabilities, but do it for their skills which your business can use. Following that then take the next step not just to meet any accommodations, but as with all employees, they are made part of the team and show thoughtful consideration and respect for them and their ideas and suggestions. Let their voice be heard. 

One last comment from Ability magazine, which reports: “Companies that were the most inclusive of disabled persons attained 28% higher revenue, 30% greater profit margins, and twice the net income of their peers during a study period of 2015 through 2018.”

Not only can rethinking hiring practices the right thing to do, but as Mar Sagar wrote in his blog: “`doing the right thing’  can frequently turn out to be a profitable business decision.”

References

Heimlich, Russell. (December 29, 2010)Baby Boomers Retire.  Pew Research Center 1615 L St. NW, Suite 800 Washington, DC.Retrieved from: http://www.pewresearch.org/fact-tank/2010/12/29/baby-boomers-retire/

Job Accommodation Network, (2018), Benefits and Costs of Accommodations, Retrieved from: https://askjan.org/topics/costs.cfm

Sagar, Mark, (2019), The Business Case For Hiring People with Disabilities=Comprehensive EAP, Retrieved from:  https://compeap.com/the-business-case-for-hiring-people-with-disabilities/

Kastelle, Tim. (2018) Why is the Retirement Age 65 in most developed countries?  Retrieved from: http://timkastelle.org/blog/2010/06/why-is-the-retirement-age-65/

Lengnick-Hall, Mark, L. (2007)  Hidden Talent, How Companies Hire, Retain, and Benefit from People with Disabilities. Praeger Publishers, Westport, CT.

Office of Disability Employment Policy. (2018) Disability Statistics. Retrieved from: United States Department of Labor, Constitution Ave. NW, Washington, D.C. https://www.dol.gov/odep/

Tuggle, Kathryn. (April 17, 2015) 5 Reasons You’ll Return to Work After You Retire. Retrieved from: The Street. https://www.thestreet.com/story/13110741/1/5-reasons-you-may-go-back-to-work-after-retiring-even-if-you-swear-you-wont.html

U.S. Dept. of Social Security. Benefits Planner|Life Expectancy. Social Security Administration, Maryland, Baltimore. Retrieved from: https://www.ssa.gov/planners/lifeexpectancy.html

Source of Images/Photos:

Diversity Plus, (2018) Diversity, Retrieved from:
https://diversityplus.com/images/others/dp1532016033191.jpg

Jimmy Carter, Retrieved from:
https://www-tc.pbs.org/wnet/religionandethics/files/2015/11/jimmy-carter-habitat-for-humanity-600.jpg

Professor Stephen Hawking, Retrieved from:
https://www.theguardian.com/science/2018/mar/14/stephen-hawking-obituary

For additional information on this topic you may wish to visit:

https://askjan.org/info-by-role.cfm#for-emplouers

https://socialwork.rutgers.edu/news-events/news/disability-and-unemployment

https://www.thearc.org/what-we-do/public-policy/policy-issues/employment

https://www.careeronestop.org/ResourcesFor/WorkersWithDisabilities?workers-with-disabilities.aspx

https://abilitymagazine.com

https://www.disabled-world.com/disability/awareness/famous/ep.php

https://www.bls.gov/news.release/disabl.nr0.htm

https://www.bls.gov/news.release/empsit.t06.htm

https://www.judsoncenter.org/disability-services/employment-services/employers/the-business-case-to-hiring-people-with-disabilities


The Right to Vote for the Disabled

You’re Not a Second Class Citizen

Vote Pins. Retrieved from:
https://news.yahoo.com/
primary-election-2020-vote-mail-
174928755.html

Now that the primaries are over it is time to begin preparing for the elections in November. As an important portion of the American voting population, it is vital that those voters living with a disability recognize that their vote is powerful and an important voice.

Voting, as Kay Maxwell defines: “Voting is a process by which a person or group of people expresses an opinion formally or officially”. She continues on to say: “voting usually refers to the act of citizens choosing candidates for public office or deciding on public issues and laws. In the United States, people vote at the local, state, and federal (national) levels”.

Historical Background on the Right to Vote

As a young country with a population of about 4 million people eligible to vote it seems only about .03% or 120,000 actually voted. At that time, voting was restricted to free white males who were property owners and who met particular religious prerequisites.

By the 1860’s voting rights became more extensive with nearly every state allowing all white males, 21 years old or older, voting rights.

At the end of the Civil War the 15th Amendment to the Constitution provided for voting rights for all men regardless of race. It would not be until the passage of the 1965 Voting rights Act that blacks truly gained the right to vote in the South.

After a long political fight in 1920, women won the right to vote with the addition of 19th Amendment to the Constitution. In 1971 the 26th Amendment lowered the voting age to 18 years of age.

It should be explained that prior to the Civil War voting was not private. People would vote by a show of hands or voice their choice out loud. The introduction of print ballots became popular after the war, but these were often in different colors and shapes which signified the different candidates. It was not until the 1890s that use of Australian ballot, where all the candidates were printed on one ballot by the government that voting became truly secret. For those living with disabilities voting rights, sadly, have been slow in coming. As records illustrated on the US Department of Justice website: The Voting Rights Act of 1965 (VRA) contains provisions relevant to the voting rights of people with

disabilities. The VRA requires election officials to allow a voter who is blind or has another disability to receive assistance from a person of the voter’s choice (other than the voter’s employer or its agent or an officer or agent of voters union). The VRA also prohibits conditioning the right to vote on a citizen being able to read or write, attaining a particular level of education, or passing an interpretation ‘test’ “.

The Voting Accessibility for Elderly and Handicapped Act of 1984 (VAEHA) was passed. This act required accessible polling places for federal elections for the elderly and individuals with disabilities. Additionally, voters are to be provided with alternate means of voting on Election Day.

The Americans with Disabilities Act (ADA) of 1990 provided protection for people with disabilities similar to those for individuals based on race, color, sex, national origin, age, and religious beliefs. The ADA title II requires State and Local governments (public entities) to ensure that people with disabilities have equal and full opportunity to vote. Title II of the ADA applies to all aspects of voting, including voter registration, site selection, and casting of ballots. This applies not only to Election Day, but during any early voting process.

The National Voter Registration Act of 1993 (NVRA) among other things, the aim is to increase the historically low registration rates among persons with disabilities. The act also provides for public assistance or state-funded programs that primarily serve persons with disabilities to also provide the opportunity to register to vote in federal elections.

The Help America Vote Act of 2002 (HAVA) requires jurisdictions responsible for conducting federal elections to provide at least one accessible voting system for persons with disabilities at each polling place in federal elections. The accessible voting system must provide the same opportunity for access and participation, including privacy and independence that other voters receive.

As of September 15, 2015 polling officials may allow those with a physical disability or a voter over the age of 70 to move to the front of the line at polling places if requested by the voter.

In 2020 Senator Bob Casey (PA) and Amy Klobuchar (MN) have introduced the Accessible Voting Act (AVA), meant to address the needs of voters with disabilities and to ensure they have equal access to the vote on Election Day and beyond.
See: https://www.govtrack.us/congress/bills/116/s3206

 You are Not a Second Class Citizen

On the CDC website it is reported that: “one in 4 U.S. adults-61 million Americans have a disability that impacts major life activities.”  Yet according to the website www.aapd.com: “16 million people with disabilities voted in the November 2016 election.” That equates to approximately 26.3% of the American population living with a disability.

Despite all of the history of struggles for equality in voting and the resulting changes, the website governing.com finds: “voting among the disabled is on the decline.” In the face of all the important issues confronting all US voters in the past elections, it is disheartening that voter turnout for those who may be affected the most by many of these issues is on the decline.

What is causing this lack of enthusiasm? There is much speculation as to why voter turnout for the disabled is on the decline. In an article written by Matt Vasilogambros, he has found barriers or lack of accessibility and untrained poll workers are the biggest contributors.  Vasilogambros quotes Michelle Bishop, a voting rights advocate, for the Nation Disability Rights Network who reveals: “under increasing pressure to oversee a smooth, secure election, untrained poll workers have discouraged the use of accessible voting machines, leaving voters with disabilities behind.” Bishop also recalls: “in the last election, for example, a voter called her to report that a machine was placed in the corner, turned off, with a flower wreath hung on it.” Bishop was believes: “The message is: You’re not wanted here.”

“A study by the Government Accounting Office (GAO), found that nearly two-thirds of the 137 polling places inspected on Election Day 2016 had at least one impediment to people with disabilities. In 2008 presidential election, it was fewer than half. The GAO also reported that State inspectors of voting accessibility had fallen nationally over the same time”, Vasilogambros wrote.

Vasilogambros goes on to disclose that: “Among the infractions: The accessible voting machine wasn’t set up and powered on, the earphones weren’t functioning, the voting system wasn’t wheelchair-accessible, or the voting system didn’t provide the same privacy as standard voting stations.”

The bottom line here is simple, it’s not that complicated. If you’re disabled, you are NOT a second class citizen, it’s time for you to speak up, voting is your right and so many issues apply to you. It is time for you to self-advocate, raise a stink, call your representatives and call the US Department of Justice to demand your rights, if, for any reason, you are unable to vote. Don’t just complain about the system or the people in charge if you’re not willing to do something. Remember so many before you fought for your rights; this year is the thirtieth anniversary of the American with Disabilities Act, let the world know, show them what you’re worth, make yourself known, it’s your turn.

Additional Information:

AAPD Statistics & Data, Statistics about the disability community as a powerful voting bloc.https://www.aapd.com/advocacy/voting/statistics/

Power: The Disability Vote
https://www.aapd.com/advocacy/voting/revup-summit/

The Right to Vote
https://disabilityjustice.org/right-to-vote/

Register! Educate! Vote! Use your power. The Disability Vote Counts.
The Association of People with Disabilities (AAPD)
https://www.aapd.com/

U.S. Department of Justice
Civil Rights Division
950 Pennsylvania Avenue, N.W.
Voting Section – Room 7254 NWB
Washington, D.C. 20530
(800) 253-3931 (voice/TTY)
https://www.justice.gov/contact-us

ADA Polling Checklist
https://www.ada.gov/votingchecklist.htm

Solutions for Five Common ADA Access Problems at Polling Places
https://www.ada.gov/ada_voting/voting_solutions_ta/polling_place_solutions.htm

Works Cited:

Center for Disease Control and Prevention. (August 16, 2018). 1 in 4 US adults live with a disability. Retrieved from: https://www.cdc.gov/media/releases/2018/p0816-disability.html

Disability Rights and Resources.   (2020). The Voting Accessibility for the Elderly and Handicapped Act of 1984. Retrieved from: https://drradvocates.org/voting-accessibility-for-the-elderly-and-handicapped-act/

Maxwell, Kay, J.  (2020). Voting in the United States. Retrieved from: https://www.scholastic.com/teachers/articles/teaching-content/voting-united-states/

Taylor, Danielle, M.  (November 29, 2018). Americans with Disabilities: 2014.  Retrieved from: https://www.census.gov/library/publications/2018/demo/p70-152.html

U,S. Department of Justice, Civil Rights Division, Disability Rights Section (September 2014). The Americans with Disabilities Act and Other Federal Laws Protecting the Rights of Voters with Disabilities. Retrieved from: https://www.ada.gov/ada_voting/ada_voting_ta.htm

Vasilogrmbros, Matt. (February 1, 2018). How Voters With Disabilities Are Blocked From the Ballot Box. Retrieved from: https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2018/02/01/how-voters-with-disabilities-are-blocked-from-the-ballot-box

Vasilgrmbros, Matt. (2020). Why Is Disabled Voter Turnout on the Decline? Retrieved from: https://www.governing.com/topics/politics/sl-disabled-polls-voters.html

Aging In Place

Be Pro-Active About the Future

Aging in Place and Being Pro-Active

Growing up I was led to believe that at a point in our lives we would enter what is called the golden years.  I have come to believe that whoever came up with this idea lied. They’re not golden, they’re rusted.

Bust of elderly Roman man,marble 40BC, Albertinum, Dresden.
Retrieved from: https://wikipedia.org

Not to be morbid, but as a realist, it is hard enough to be in the later stages of life where getting out of bed is sometimes a challenge, bending over to pick something up, walking and even our reflexes and thought processes begin to slow down. Many

of us begin spending time thinking about our youth, the way it was and begin thinking about our own mortality.  Combine these factors with the thought of spending our remaining years in a nursing home being care for by strangers in unfamiliar surroundings is not an encouraging scenario!

Now that we are in the middle of a dangerous health crisis which seems to affect older adults more severely than younger people and will undoubtedly have an influence on the future life styles of our population, our aging choices become even more complicated. For those at a point in life where planning for the future anticipating those Golden Years, these decisions have become much more complex and if there is a family element to consider. Does the senior go to a nursing home? Do they move in with a family member? Or do they choose Aging in Place?

This article is not intended to endorse or discredit any one option; the intent is simply to try to explain one of the choices available.

Aging in Place

According to Seniorliving.org:

“Aging in place means a person making a conscious decision to stay in the inhabitation of their choice for as long as they can with the comforts that are important to them. As they age, these may include adding supplementary services to facilitate their living conditions and maintain their quality of life.

Aging in place refers to a person in their golden years when they can live in the residence of their preference and are still able to access the things they require and used to in their daily life.

Some people may confuse the issue by thinking that aging in place will fix the things that they may have or problems that may arise. Aging in place can only address those problems that have already been planned for in the person’s life. Aging in place challenges refers to the health, social and emotional needs an elderly person may need and such needs that can be addressed to help them maintain a well-rounded life, in the residence of their choice.

When to Start Planning:

Aging in place means a person being able to live in the place of their choice without losing their quality of life when they reach senior age. But ideally what aging in place should be addressing is not just to maintain the quality of life that the person is used to, but also to make it better whenever possible.

To live out later years as comfortably as possible, financial and economic plans should be put in place from your earliest working years. Although Aging in place refers to persons of retirement age, it should concern everyone as soon as possible from the earliest years of one’s career. Plans for retirement should thus be created as early as possible and changed, revised and adjusted according to changing needs and requirements.”

There is no place like home:

For a great many people the prospect of spending their remaining years in their own home has tremendous appeal. The U.S. Centers for Disease Control and Prevention defines aging in place as: “The ability to live in one’s own home and community safely, independently and comfortably, regardless of age, income or ability level.”

As one begins to think about retirement planning, the home one chooses to live in should be part of that planning. Be Pro-Active may be the best advice anyone can give.

When considering aging in place, a key amount of the planning strategy has to include the age of one currently owned home. 

  • The median age of homes in the U.S. is approximately 37 years old, depending on what area of the US you live in. Homes in the Northeast have the oldest median age; approximately 57 to 58 years of age. The youngest areas, such as Nevada, Arizona, New Mexico, Texas, may average 20 to 25 years old.
  • 38% of sales are to 1st-time buyers; with a median age of 31 years old.
  • Median age of repeat buyers is 52 years old. (https://buyersask.com/articles-of-interest/age-of-houses-in-the-us-whats-the-average-age/ )
  • The American with Disabilities Act was passed in 1990. (29 years old)
U.S. Showing areas with newest homes in the west and south east, the northeastern areas with the oldest homes

This means that because so many homes were constructed before passage of the Americans with Disabilities Act planning to renovate in many cases becomes more complicated. Planning for this scenario will be required before evaluating if remaining in your own home is the best and safest option.

It may seem obvious to most, but one of the critical elements in being pro-active in planning for senior years is health. We all hope to remain active through our ‘Golden Years’, it doesn’t always happen as we would wish.

Someone once said ‘youth is wasted on the young’, and as we age one may discover deterioration in our vision or hearing. Or perhaps our mobility isn’t entirely what it should to be and one may find balance less than it was a few years ago. As if all these possibilities weren’t enough, our joints and muscles fail to operate as smoothly as in our younger years and because of the possibility of memory loss we are really not exactly sure when our joints were not uncomfortable to move.  The majority of these prospects sound unappealing but these are normal processes as we age. Regardless, even in the case of a more unfortunate extreme health change, by being pro-active in home planning the opportunity to remain at home is still possible. Below are just a few examples:

  • In the case of decline in vision: are all controls clear and easy to read, such as the knobs on stove and oven. Is there ample lighting, especially on stairways?
  • When discussing stairways there are multiple considerations. For those who are dealing with mobility challenges stairs are always obstacles to overcome.
  • In addition to stairs, throw rugs, uneven flooring, cords, objects on the floor and many more factors related to movement have to be compensated for.
  • Door knobs and faucet fixtures should be the push/pull type rather than the twist variety.
  • Tubs/showers must be addressed. Are they too high or is there a zero clearance shower. Have grab bars been installed and a high rise toilet?

These are only a few of the factors that will need to be weighed when considering aging at home. If you are remolding before planning on retiring, it would be best to hire a builder familiar with accessibilities and you may want to first check with you local office for the aging, public health office, local senior center, AARP or your regional independent living center for more information.

There are many choices as we age and aging in place is just one. Each individual is different as are health needs and housing requirements. There are many options to explore, but a few things are certain, we are all aging and, according to the National Institute of Aging:

  • America’s 65-and-over population is projected to nearly double over the next three decades, from 48 million to 88 million by 2050. (https://www.nia.nih.gov/news/worlds-older-population-grows-dramatically)
  • More than 3 in 4 people — 77 percent want age at home.
  • 36 percent plan to modify their homes to enable them to stay in a familiar, safe environment as they age and we will all face these options someday. 

Consider the shortage in long term health care facilities, as shown in the table:

Table illustration of a dramatic rise in demand in health care facilities, while at the same time showing a decrease in the number of facilities. Retrieved from: https://blog.soliant.com/healthcare-news/americas-nuring-shorage-by-the-numbers/

Bearing this shortage in mind and the projected increase in senior population and the aches and pains you may feel getting up in the morning, it is reasonable to draw the conclusion that it is never too soon for a family to begin planning and being pro-active for those ’Golden’ years. Maybe aging in place is right for you.

One final note; it seems it was a moment ago my wife and I had our first child. I blinked and now we have three children and my grandson is graduating high school. It all happens faster than you can imagine so it is never too soon to begin thinking about your later years.

Additional Information:

Home Modifications
https://www.aginginplace.org/home-modifications/

AARP Home Fit Guide
https://www.aarp.org/livable-communities/info-2014/aarp-home-fit-guide-aging-in-place.html

Guide to Caring for Elderly Parents
https://www.aginginplace.org/a-guide-to-caring-for-elderly-parents/

A Seniors Guide to Growing Old in Your Own Home
https://www.simplyss.com/blog/aging-in-place-a-seniors-guide/

Works Cited:

Witt, Scott and Hoyt, Jeff. (March 13, 2020). Aging In Place – What Does Aging In Place Really. Retrieved from: https://www.seniorliving.org/aging-in-place/

AARP Bulletin. (October 10, 2018). Most Retirees Prefer to Stay Put. Retrieved from:
https://www.aarp.org/retirement/planning-for-retirement/info-2018/retirees-age-in-place-aarp-study.html

 Binette,  Joanne and Vasold, Kerri. (August 2018, Revised July 2019). 2018 Home and Community Preferences: A National Survey of Adults Ages 18-Plus. Retrieved from: https://www.aarp.org/research/topics/community/info-2018/2018-home-community-preference.html?CMP=RDRCT-PRI-OTHER-LIVABLECOMMUNITIES-032218

Center for Disease Control and Prevention. (2020). Healthy Places Terminology.  Retrieved from: https://www.cdc.gov/healthyplaces/terminology.htm

Home Builders Association. (2019).The Age of the Housing Stock by State – Where are the Elderly Homes? Retrieved from: https://springfieldhba.com/the-age-of-the-housing-stock-by-state-where-are-the-elderly-homes/
Cire, Barbara. (March 28, 2016). World’s older population grows dramatically. Retrieved from:https://www.nia.nih.gov/news/worlds-older-population-grows-dramatically

Trying to Recognizing Dementia

Where Do They Go

Growing up, everyone who knew my father considered him Iron Man and the one who would definitely be the last man standing among our family members. He was a big guy, physically strong, and although he never finished high school, had more common sense than anyone I have ever met. He could build anything, loved the outdoors, especially fishing, and possessed a kindness and understanding which he put a great deal of effort into hiding.

Drawing of an old man diagnosed with senile dementia

Later in his life he began to have a little trouble remembering things. These hiccups in his memory progressed to the point where he would confuse me with my brother and mixed up his grandchildren’s names. Perhaps the strangest occurrence was when he took my mother to play bingo one evening and when it came time to pick her up, he wasn’t there. After calling the local police, he was found just driving around the city with no idea where he was going. He wasn’t lost or driving recklessly he just out driving.

Conversations with him became more and more difficult, he would drift off and begin talking about events which took place during his youth.

For many of us, the people we have always known suddenly begin to change or disappear. Where to they go? Why? What is happening? What are the signs they are leavings us?

I am just one of the millions of Americans who was forced to come to terms with an older relative afflicted with Dementia. What is happening to these people we care about can be confusing and unsettling.

Dementia is an umbrella term used to describe a decline in memory or brain function that impacts an individual’s daily life. This is different from the normal decrease in short-term memory most people experience as they age. Dementia is caused by changes in the brain which impact cognitive function, and it can be associated with types of dementia many of us are familiar with, such as Alzheimer’s, Parkinson’s, and Huntington’s disease. There are a number of causes and different type of dementia. For additional information, visit: https://www.dementia.org/causes

According to the website Dementia.org, there are seven stages of dementia and they state, “in most cases, dementia is irreversible and incurable. However, with an early diagnosis and proper care, the progression of some forms of dementia can be managed and slowed down”.

As the Dementia.org website also points out: “Learning the stages of dementia can help with identifying signs and symptoms early on”. This knowledge can assist those affected with the early stages to get proper care and can aid caregivers in understanding what to expect in future stages.

Stage 1: (stages 1-3 known as pre-dementia stages)

  • Normal functioning stage.
  • Patient doesn’t show noteworthy memory problems.

Stage 2: Age Associated Memory Impairment

  • Occasional forgetting where an object was placed.
  • Forgetting familiar names.

Although this is common as a normal part of the aging process, this decline in memory can be an early sign of degenerated dementia.

Stage 3: Mild Cognitive Impairment

This is the stage where clear reasoning problems begin to manifest themselves.

  • Getting lost easily.
  • A marked reduction in work productivity.
  • Misplacing or losing important items.
  • Difficulty concentrating.
  • Frequent inability to remember friends or family member names.
  • Struggling to remember instructions or information from a book.

This is the stage where the individual may begin to have minor anxiety as the symptoms are now beginning to interfere with their life. It is at this stage of the disease people are encouraged to seek a clinical diagnosis.

Stage 4:

At this stage, the sufferer begins to become socially withdrawn and has signs of personality and mood changes. Denial of the condition is common.

  • Decreased knowledge of current/or recent events.
  • Difficulty remembering things about one’s personal history.
  • Inability to handle finances, or to do any planning.
  • Disorientation.
  • Recognizing people and faces becomes a struggle.

At this stage, patients will have no trouble with familiar faces and familiar locations, but often patients will avoid challenging situations to prevent stress and anxiety or to hide condition.

At this point my father would not give up his driver’s license, but gave up is car. He was relying more and more on my mother to remember people and names. His memories of his own life were being distorted. My brother took over my parent’s finances and was scheduling doctor’s appointments and ordering prescriptions. Perhaps the hardest change for all of us, was his change in temperament. He became aggressive, he unexpectedly would disagree with anything and at the same time gave little thought to what he said to people or how he said it. In general, he could become mean at times. He was in a nursing home now and occasionally was confused as to how and why he there, but he would forget being there was his idea. I wish we had known more about dementia at the time, it may have helped us to understand.

Stage 5:

At this stage some assistance is required to carry out daily activities.

  • Inability to remember major details such as close family member’s names or home addresses and phone numbers.
  • Disorientation about time and place.
  • Trouble or inability to make decisions.
  • Forget basic information about themselves.

Although stage 5 can interfere with daily life styles, those with 5th stage dementia do not seem to need assistance with basic functions such as using the bathroom or eating. Most still have the ability to remember their name and the name of their spouse.

Stage 6:

Entering stage 6, patients begin to forget the names of their spouse, their children or primary caregivers and in all likelihood will require full time care.

  • Delusional behavior
  • Obsessive behaviors and symptoms.
  • Anxiety, aggression and agitation.
  • Loss of will power.

Patients may begin to wander, have difficulty sleeping and in some cases will experience hallucinations.

Before my father’s passing, he was well into stage 6. He was having difficulties sleeping and was starting to have hallucinations. He at times had aggressive behavior and anxiety as well as obsessive behavior.

Stage 7:

Along with the loss of motor skills, patients will progressively lose the ability to speak during the course of stage 7. Loved ones and caregivers will need to help the patient with walking, eating and use of the bathroom.

Most cases of dementia may be reversible. Sometimes dementia-like conditions may be caused by underlying conditions which may be treatable.

On the Dementia.org website they write: “The more aware you are of these steps, the quicker you will be able to react and seek help, either for yourself or for a loved one.”

Self Help:

For the many forms of dementia, is there anything we can do to help ourselves to lessen our chances of developing dementia? There are no guarantees but the following are suggestions which may help. Research suggest:

  1. Stay physically Active
  2. Stay socially active
  3. Participate in mentally stimulating activities i.e. learn languages, continue education
  4. Quit smoking and minimize drug use
  5. Eat a healthy diet (research has found that a Mediterranean style diet is most beneficial)
  6. Manage cardiovascular diseases

Dementia.org states: “These measures aren’t only for individuals who want to prevent dementia, these life style changes are also beneficial for those who are already diagnosed, as positive changes can slow the progression of dementia.”

Hereditary:

One final comment for anyone, who, like myself, wondered, is dementia passed on through our DNA?

According to University Healthnews.com: The more family members you have who are affected by certain types of dementia, including Alzheimer’s, the greater your risk becomes. So, strictly speaking, is dementia hereditary?

Dementia statistics suggest that genetic background is certainly a factor – but not the only factor”.

Please Note: The article was written to inform and for awareness. SAIL is not a Healthcare provider, nor is any member of its staff. The information provided is not meant to be a substitute for diagnosis and treatment by a Physician, licensed professional, or therapist. Any information provided in this article is the opinions of the author and not that of the author’s employer or the employer’s staff.

For Additional Information Visit:

Molli, Grossman, PhD. (2018). Stages of Dementia. https://www.kindlycare.com/stages-of-dementia/

Works Cited:

Healthcare Brands. (2020). Dementia. Retrieved from: https://www.dementia.org

Vitek, Jimison, Susan. (2018). Is Dementia Hereditary? Genetics May Play a Role, But Other Factors Contribute. Retrieved from: https://universityhealthnews.com/daily/memory/is-dementia-hereditary/

Image Source:

Retrieved from: https://en.wikipedia.org/wiki/Dementia

Teaching Special Needs Students during School Closures

In the past month or so school administrators and teachers have been contending with how to continue education programs for students with special needs. There are many questions associated with this topic and they entail multiple components, not just the educational aspects.

Image of a Hand
Special Kids
Special Needs

Special education has always been an interest of mine. I am not an expert by any stretch of the imagination and find the more I research and learn the more questions come to mind.  Technology offers so many possibilities but there are many issues yet to be resolved. A good example of this is the problem of on line accessibility for all ranges of learning disabilities (LD). Technology alone cannot meet all of the needs, and many small, rural schools lack the community infrastructure for connectivity in outlying areas.  In some cases, there may be budget constraints. 

As the coronavirus spread and states began to shut down schools, many educators found themselves scrambling to find ways to complete the school year. As for the LD students, in an article on the Atlantic Website, Faith Hill reports:  “For students with special needs-roughly 7 million in the U.S. ages 3 to 21-the coronavirus pandemic, and its attendant school closures, can be especially scary. At school, they get individualized attention from professionals who are trained in and deeply familiar with their unique ways of thinking, perceiving and processing.” Hill feels: “No amount of love and care at home can turn the average parent into a special-education teacher overnight. Nor can it enable them to practice occupational speech, or physical therapy-services that are provided in many schools.”

Parents who have had successful careers in areas other than education suddenly find themselves with the demanding task of maintaining their special needs child’s education. Homemakers, businesspersons, construction workers and factory workers with no psychology, speech therapy, physical therapy, or educational training suddenly find themselves as teachers at home. Working from home, in isolation, parents are asked to become special education teachers and wrestle with the dilemma trying to fill the gap of continuing their children’s education.

For many LD students using such online tools such as Zoom and Microsoft teams may not be accessible for a variety of reasons. Regarding this topic, Hill finds: “Students with disabilities often use assistive technology; for instance, a student with visual impairments might use screen-reader software to have text read aloud or a braille reader to read text themselves. But a lot of online platforms aren’t compatible with assistive technology-and even when they are, other problems frequently arise.”

During the extended shutdown many parents and special education teachers are worried about backslide or regression in academic progress. This occurrence already happens yearly, which Hill calls “melt of skills” or “summer side”

Parents who have taken on the role of teacher for their children need helpful advice. Access to special education information at home seems to be sparse at best and if the family is not tech savvy or has no internet access, they may find themselves in a depressing, impossible position.

While looking for suggestions for this article, I asked for some advice from Chad Shippee, a principal of a small rural school in upstate New York. Mr. Shippee responded with a few pointers he shares with parents:

1. “Keep open lines of communication with any school personnel that your child worked with when school was in session. Resource, therapy, and counseling should ideally be available, even if done remotely. These professionals can also help with some suggestions on how to make things go smoothly at home.”

Better together
Parents and Teachers

         2. “Keep a structured schedule. Many students with disabilities work best with structure and know what to expect when one is followed.”

         3. “Don’t be afraid to take a break, or pick and choose what you can and can’t do with your child. No schoolwork is worth the anxiety and stress that can impede on your home life with your child. Do what you can, and just do your best.”

Mr. Shippee also commented: “I see these as the big points. Especially number 1.”

There are a number of web-based articles providing some suggestions. For example, Theresa Harrington has written an interesting article on the Times-Standard website in which she provides five basic tips:

Father and daughter
doing school
work
  1. “Do not try to replicate school at home. Home-schoolers are not even really home-schooling right now because normally, our world is our classroom. Think about it as quarantine schooling.” Remember you are a parent, not a teacher. As Harrington goes on to explain: “It’s going to be messy. Don’t worry about it.” The majority are in the same boat, we are all trying to survive, and keeping money coming in during this pandemic is the priority, and Harrington realistically reminds us that during this time: “Academics may need to come second.”
  2. “Be gentle with yourself, your kids, your partner, and your coworkers. This is unprecedented. Both parents should share in the duties, whether for homeschooling, childcare, or housework.” Harrington mentions concern about “women” in this situation “taking it all on.” 
  3. “Ask your children what they would like to learn. This is a wonderful opportunity to not just do worksheets. Do real life. Make a meal, make a bed, fold laundry, serve meals, clean up, do chores, and do repairs around the house. This helps parents and gives kids skills in gardening, sewing, and fixing things, along with reading, playing, inventing, building things, and singing, dancing, and experimenting.”
  4. “Recognize that learning doesn’t just happen with a teacher or a book at a desk. It can happen anywhere. Children are learning even when they’re playing with Legos.”  This brings up an interesting point (having children myself) why do Legos now come in pre-defined sets such as “Star Wars” themes or pre-designed boats or planes. Why not just throw away the directions and pictures, give them a box of Legos and let their imaginations, creativity and problem-solving skills go wild and develop. One may be surprised by what children using their own minds can come with. Another idea is to give a child some matchbox cars and a box of sidewalk chalk and watch what they do with it. I have watched my grandson spend all day drawing out city streets and parking lots on a section concrete. We need to look at things through their eyes, as Harrington points out: “You don’t have to teach your children everything.”
  5. Be flexible. Learning doesn’t have to take place during regular school hours. If you’re staying home and working, maybe you can shift school work to weekends, evenings or afternoons.” Harrington also suggests: “Use the internet or games as a tool, but don’t feel guilty if you need to rely on them at times to get things done.”

To me, one of the best take-away from the majority of the information found for parents who in this crisis suddenly find themselves being a teacher, remember this is a crisis, you have to do what is necessary during this pandemic so just do the best you can.

In another blog article entitled, How to Homeschool Your Kids During the Pandemic, Claire Sasko provides 10 Tips:

  1. “Use your teachers as your tutors”
  2. “Lower your expectations”
  3. “Start  early in the day”
  4. “Establish a structure”
  5. “Give your kids snacks”
  6. “Keep the little ones out of the room”
  7. “Schedule free time after schoolwork, especially if your kids are ahead”
  8. “Find online resources you trust”
  9. “But don’t forget about books”

“And remember: You don’t always need to force online learning”

There are links to full versions of these articles and others listed at the end of this document.

Finally, although many schools and educators have been working on and preparing for an event like our present situation, there is still much to consider. Their efforts are a work in progress. Remember COVID-19 was sudden and we are all attempting to battle through it.

Technologies have made great progress and continue to make advances in special education. Not all of these tools are yet completely accessible, and broadband is still missing in many rural communities. Demographics are such that not all families have access to individual computers and if a parent now works from home, sharing a computer becomes a challenge in home teaching. Additionally, not all parents have the necessary skills or patience for the task; this opens the possibility for abuse at home. These areas continue to improve, but in the meantime, if you know someone without internet access, struggling with this topic, please share any portion of this information with them.

A Special Thanks to:

Chad Shippee, PreK-12 Principal, Bolton Central School for taking the time to provide suggestions and encouragement, which were a guide for the writing of this.

Additional Resources:

Hill, Faith. (April 18, 2020) The Pandemic Is a Crisis for Students With Special Need Some Students Rely on Schools Foe the Personal, Hands-On Attention of Specialists. What do they do now? Retrieved from: https://www.theatlantic.com/education/archive/2020/04/special-education-goes-remote-covid-19-pandemic/610231/

Harrington, Theresa. (April 16, 2020). Homeschooling due to coronavirus? Expert tips on doing ‘what’s best’ for your family. Retrieved From:
https://www.times-standard.com/2020/04/16/qa-homeschooling-due-to-coronavirus-expert-advises-parents-to-do-whats-best-coronavirus/

Sasko, Claire. (April 23, 2020). How to Homeschool Your Kids During the Pandemic: 10 Tips From Homeschooling Parents. Retrieved from: https://www.phillymag.com/news/2020/04/23/homeschooling-tips-pandemic/

Family Education. (March 18, 2020). At-Home Learning Resources for the COVID-19 Outbreak. Retrieved from : https://www.familyeducation.com/at-home-learning-resources-for-the-covid-19-outbreak

Unknown. (March 16, 2020). Homeschooling during a pandemic lockdown. Retrieved from: https://zephyrnet.com/homeschooling-during-a-pandemic-lockdown/

Parenting Advice. (April 19, 2020). Top Tips from Parents on Home Schooling During a Pandemic. Retrieved from: https://senresourcesblog.com/2020/04/19/top-tips-from-parents-on-home-schooling-during-a-pandemic/

Fox, Goldberg, Eleanor. (March 19, 2020). 14 parents share their work from home plans, and tricks they’re using to do 2 full-time jobs during the coronavirus pandemic. Retrieved from: https://www.insider.com/parents-share-tips-for-working-from-home-during-coronavirus-pandemic-2020-3

Others Works Sourced:

PBS. (March 24, 2020). The switch to remote learning could leave students with disabilities behind. Retrieved from: https://www.pbs.org/newshour/education/the-switch-to-remote-learning-could-leave-students-with-disabilities-behind

Snelling, Jennifer and Fingal, Diana. (March 16, 2020). 10 strategies for online learning during a coronavirus outbreak. Retrieved from: https://www.iste.org/explore/learning-during-covid-19/10-strategies-online-learning-during-coronavirus-outbreak

Autism Awareness

Neglecting the Autistic During Covid-19

Jig Saw Puzzle Globe
Autism Support
Network Logo

There seems to be a great deal of concern about this pandemic and it is not unreasonable to believe this is even more unsettling for young adults and children. During these times of uncertainty, coping with all of the unknowns, and adjusting to major life changes affects all of us. For those people afflicted with autism this can go beyond worrisome, it becomes bewildering and frightening which may increase anxiety, and cause involuntary behavioral problems.

To some degree, we are all struggling with isolation and cabin fever.  The importance of reaching out to each other has become abundantly clear.  This is especially important for disabled and autistic community members. Navigating school closures, the sudden loss of support providers, as well as caregivers and friends and having one’s activities restricted due to fears of contracting the virus is especially hard for those with autism. While writing for the Mighty.com, Christine Motokane claims: “A lot of autistic people thrive on routine”, in the case of the current pandemic, there may be times when you’re experiencing increased meltdowns from your autistic loved one. It is important to recognize that the sudden life style changes brought about this pandemic can cause major changes in an individual with autism and these behavioral difficulties are a part of the coping process.  Motokane emphasizes: “Explain to the person that this will not last forever and that we have to utilize “social distancing” (like not going to a favorite restaurant or seeing favorite people) so we can conquer the virus faster.”

While talking about COVID-19 with someone with autism under your care the Autism Support Network recommends: “If you are caring for a child or family member with autism, it’s important to talk with them about coronavirus to ensure they have the information they need, but without unnecessarily frightening them.” On their web site: http://www.autismsupportnetwork.com/news/autism-and-coronavirus-covid-19-993087   they provide 6 steps of guidance to help with your conversation and avoid frightening:

  • Try to talk with your child before they hear about the situation elsewhere, so you can understand what they heard and provide facts that are suitable for their age and level of understanding.
  • Convey the information using a method the person prefers, such as stories or pictures.
  • Allow the individual to process the information, this may mean they play out or talk about fearful topics. You can be on hand to soothe these fears and to be available to answer questions.
  • Talk with you support system, such as school contacts, caregivers and any other support groups.
  • Be on the lookout for signs of distress, there may need for additional support if they are anxious or showing signs of stress.
  • “Be a source for assurance and positivity” for the autistic person to provide a feeling a safety during frightening situations.

People with autism may require additional assistance and encouragement while facing the challenges in understanding, communicating and adjusting to the modifications needed to maintain safety through the duration of this pandemic. There is an increased chance of anxiety and depression that may be intensified during our current stressful period. The University of North Carolina (UNC) on their web site, https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times  has set up 7 support strategies which are designed to meet the needs of individuals with autism during this uncertain time.

“7 Strategies to Support Individuals with ASD through Uncertain Times”

  1. Support understanding
  2. Offer opportunities for expression
  3. Prioritize coping and calming skills
  4. Maintain routines
  5. Build new routines
  6. Foster connections (from a distance)
  7. Be aware of changing behaviors

In addition to these strategies, there are ready-made resources that are intended to help caregivers quickly and easily utilize these aids. The caregiver may want to consider involving the individual with autism in making the decision on which tools may be the most helpful. These tool kits are taken directly from the University of North Carolina AFIRM website (Autism Focused Intervention Resources & Modules).

UNC Tool Kits:

Supporting Individuals with Autism through Uncertain Times Packet

The Supporting Individuals with Autism through Uncertain Times Full Packet contains all of the content, strategies, and resources related to supporting individuals with ASD.
Supporting Individuals with Autism through Uncertain Times Full Packet.pdf

Supporting Individuals with Autism through Uncertain Times Article Only

The Supporting Individuals with Autism through Uncertain Times Article Only contains all of the content and strategies related to supporting individuals with ASD. This content is adapted from Hume, Regan, Megronigle, & Rhinehalt, 2016.
Supporting Individuals with Autism through Uncertain Times Article Only.pdf

Resources for Adults with Autism for Uncertain Times Full Packet

The Supporting Adults with Autism through Uncertain Times Full Packet contains all of the content and resources related to supporting adults with ASD.
Supporting Adults with Autism through Uncertain Times Full Packet.pdf

We are undergoing extraordinary times and as we attempt to navigate our way through lockdowns, social distancing and social isolation. In our own efforts to adjust, we may have unknowingly become complacent in regard to some the most vulnerable members of our population.

In a news article for health24.com, Hlengiwe Mkize describes: “autism is a developmental disability characterized by difficulties with social interaction and communication, autistic persons should be assisted to ensure that they are protected from contracting COVID-19 as they may be unable to communicate to seek medical help or rely their symptoms.”

Also during this time of social separation, because of the possible lack of communication skills, individuals with autism are also considered a group susceptible to gender-based violence as they may not have the ability to report abuse. Mkize points out: “children with autism may not understand what abuse is.” The non-speaking person with autism is at a higher risk of all forms of abuse due to the inability to communicate with others.

There have been many unanticipated consequences due to lockdowns. For instance, the parents of children with autism no longer have the help of speech, physical, occupational and the other therapists needed to assist their child.

Mkize states: “Just missing one month of therapy will have a major impact on our autistic children. We need to begin exploring ways of how these gaps are going to be addressed once the lockdown has been lifted.”

The importance of is not just confined to the United States, this seems to be a global concern, as Mkize emphasizes: “To reiterate the UN Secretary General’s Words ‘” The rights of persons with autism must be taken into account in the formulation of all responses to the Covid-19 virus.”’

This is an extremely complex topic and it is difficult to cover all aspects of autism, my only hope is that by writing this I have caused people to begin to think about those who are easily overlooked.

Below are some of the many resources I discovered on line and perhaps by sharing, one or two may be of benefit or relevant to the readers.

Resources:
https://themighty.com/2020/04/coronavirus-pandemic-autism-routine/?utm_source=yahoo&utm_medium=referral&utm_campaign=in-text-link

http://www.autismsupportnetwork.com/news/autism-and-coronavirus-covid-19-993087

https://kidshealth.org/en/parents/coronavirus-how-talk-child.html?WT.ac=p-ra

https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times

https://www.health24.com/Medical/Autism/News/opinion-autistic-persons-vulnerable-during-covid-19-outbreak-20200402

https://www.healthline.com/health/mental-health/7-essential-tips-for-making-the-most-of-online-therapy-during-covid-19

https://www.healthline.com/health/mental-health/daily-quarantine-routine-for-depression-chronic-pain

https://www.healthline.com/health/5-tips-for-coping-with-cabin-fever-during-a-shelter-in-place

https://www.healthline.com/health-news/covid-19-serious-effects-people-with-mental-health-disorders

https://autismpdc.fpg.unc.edu

Works Cited

Autism Support Network. (2020). Autism and coronavirus (COVID-19). Retrieved from: http://www.autismsupportnetwork.com/news/autism-and-coronavirus-covid-19-993087

Mkhize, Hlengiwe. (2020). OPINION: Autistic persons vulnerable during Covid-19 outbreak. Retrieved from: https://www.health24.com/Medical/Autism/News/opinion-autistic-persons-vulnerable-during-covid-19-outbreak-20200402

Motokane, Christine. (2020). One Reason the COVID-19 Pandemic Might Be Extra Challenging for Autistic Adults. Retrieved from:  https://themighty.com/2020/04/coronavirus-pandemic-autism-routine/?utm_source=yahoo&utm_medium=referral&utm_campaign=in-text-link

University of North Carolina. (2020). Supporting Individuals with Autism through Uncertain Times. Retrieved from: https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times

Image:

Autism Support Network log. Retrieved May 2020. Retrieved from: http://www.autismsupportnetwork.com

Mental Health Awareness Month

Emotional Health of Front Line Workers

May is Mental Health Awareness month. The current pandemic provides an opportunity to investigate some of the resulting tolls on mental health this virus has taken.

As this article began there was a striking news story, that emphasizes the importance of mental health awareness

On Sunday April 26, 2020, according to Zachary Dowdy of Newsday:  “Doctor Lorna Breen, medical director of the emergency department at New York-Presbyterian Allen Hospital in the northern tip of Manhattan, died in Charlotte, Va., where she was staying with family.”

Dr. Breen who was 49, received both her undergraduate and graduate degrees from Cornell University, and completed her residency at Long Island Jewish Medical Center. Dr. Breen doubled in Emergency Medicine and Internal Medicine.

It was while at New York-Presbyterian Hospital that Dr. Breen became infected herself with the coronavirus. After recuperating, she returned to work. Following a week and a half back at work, she was sent home. Concerned, her family brought her back home to Charlotte. It was there, Dowdy writes: “Police officers responded to a call seeking medical assistance on Sunday.” Dowdy continues: “the victim was taken to the U.Va. Hospital for treatment but later succumbed to self-inflicted injuries.”

Dr. Lorna Breen’s father, Dr. Philip C. Breen said in an interview with the Times, as Dowdy recounts: “That his daughter had no mental illness that he was aware of. But he said she did recently seemed  ‘detached,’ making him suspect she was having problems coping with the fact the virus had so ravaged the city that patients were dying before they could be removed from the ambulances arriving to the emergency room.”  Dr. Breen went on to say: “She tried to do her job, and it killed her.”

Finally, Breen told newspaper reporters: “She was truly in the trenches of the front line,” and then went on to say: “Make sure she’s praised as a hero because she was.” He’s right.

There are so many concerns with the Covid-19 pandemic and with the complexities and diversity of our population that it is far from a simple task to arrive at solutions which are all encompassing. The chances of neglecting one group or another is a certainty. The passing of Dr. Breen brings to light one of the groups which are not so much neglected as they are taken for granted. Often expected to just be there, it may be incorrectly assumed there is no need to worry about a highly educated doctor, they know how to care for themselves.

In a blog, Sigal Samuel reminds us: “If you’re finding it hard to stay home right now, imagine how it would feel to be a doctor or nurse. Health care workers don’t have the luxury of holing up in their homes to shield themselves from the coronavirus.” For us, the current isolation is challenging, but for those dedicated to saving lives, separation from families for long periods of time is necessary rather than taking the risk of transmitting the virus to their love ones.

It has been reported that physicians have a higher suicide rate than those who are in the military which is considered a career that is very stressful. In this research reported by Pauline Anderson, she writes that the: “rate exceeds that of the general population by 2.5 to 4 times.” It seems while trying to understand the reasons for the high rates, that the most common diagnoses is attributed to mood disorders, alcoholism and substance abuse.

As this pandemic spread across the world and the anxiety which correspondingly accompanies the illness, consider the impact on our first responders and healthcare workers. As emergency rooms became overwhelmed with cases of the Coronavirus, a shortage of supplies and the seemly endless rising number of people requiring medical attention the call went out for more help. Doctors, Nurses, EMTs and other health care workers and responders were forced to face mounting cases of the infection.

When discussing the mental health toll on health care staff, Sigal refers to Italy as an example: “Doctors there had to choose which patients got put on a ventilator, a heartbreaking decision that may cause lasting psychological distress.” In the United States, shortages in ventilators loomed over most hospitals and in particular in New York City. Fortunately, medical personal here were not forced to make the choice of who lives and who dies.

In the U.S., emergency room staffs soon became inundated. Samuel, using Italy as a comparison, details: “Because there aren’t enough infectious specialists to tend to all the Covid-19 patients, other doctors like ophthalmologists and dermatologists are being trained to care for them, for example by providing supplemental oxygen.” Most have no experience watching a patient intubated or die in front of them, being forced to hide or delay their grief, and unable to share their emotions, some of them may end up with post-traumatic stress disorder or other mental health problems down the line.” In America, doctors with varying specialties stepped up to help, wherever they could.

While first hand witnessing the increasing death toll, combined with little break from the epidemic and long hours, many hospitals quickly resembled something like a wartime MASH unit. Stress, anxiety and weariness, for some, provides the potential for Post-traumatic stress disorder (PTSD) is a reality.

In her article for Psychologytoday.com, Shaili Jain M.D. has found: “the intensity of exposure to disaster plays a big role in determining who will develop PTSD in the aftermath.” Being isolated from family or being fearful of subjecting family to the disease, while attempting to maintain their chosen career mission of preserving life, mixed with concerns for the wellbeing of fellow workers and the frustrations of patients needing treatment with little options available the exhausting, frustration easily leads to helplessness and depression. The results are that they are reminded of their own vulnerabilities.  As doctor Jain wrote: “the high stakes demands that force them to ‘carry on and defer’ grieving and the processing of emotions and subsequent self-quarantine mandates which left them isolated from their traditional support systems.”

Finally, doctor Jain finds: “the collective lessons we have learned from prior disasters tell us what needs to be done to prevent an epidemic of PTSD among COVID-19 essential workers: in the immediate term, fundamental resources to help secure their personal safety and in the mid to longer-term a systematic, coordinated response that provides active outreach, identify vulnerable subgroups and if necessary, offer psychological treatment. Fortunately, the mental health community has developed effective therapies specifically tailored to treat and manage PTSD. There is no reason for this side effect of the COVID-10 pandemic to persist.”

Frontline healthcare workers require systematic action to fight the mental health effects from the high pressure of the reality of treating those people who have contracted the virus. To be successful at defending against the deteriorating mental health of caregivers requires more than lip-service, or sympathy and rhetoric. What is required is a long-term commitment of funds, resources, and societal support and understanding.

If you would like to help provide mental health support to health care providers visit: https://www.drlornabreen.com/

Are You In Crisis? Call the American Foundation for Suicide Prevention at 800-273-8255

Works Cited:

Anderson, Pauline. (2020) Doctors’ Suicide Rate Highest of Any Profession. Retrieve From: https://www.webmd.com/mental-health/news/20180508/doctors-suicide-rate-highest-of-any-profession#1

Dowdy, Zachary, R. (2020) Top Manhattan ER doctor dies by suicide, cops and report say.
retrieved From: https://www.newsday.com/news/health/coronavirus/manhattan-emergency-doctor-suicide-1.44212330

Jain, Shaili, M.D. (2020) Bracing for an Epidemic of PTSD Among COVID-19 Workers. Retrieved From: https://www.psychologytoday.com/us/blog/the-aftermath-trauma/202004/bracing-epidemic-ptsd-among-covid-19-workers

Samuel, Sigal. (2020) Doctors and nurses are risking their mental health for us.https://www.vox.com/future-perfect/2020/3/26/21193122/coronavirus-mental-health-doctors-nurses-covid-19

Image Cited:

Dr. Lorna Breen Retrieved From: https://heavy.com/news/2020/04/lorna-m-breen-dead/



Fighting Home-office Stress

By: Chas Barrie, Accessibility Advocate
Date: 04/22/20

Don’t Pull Your Hair-Out

It has been some time now since many of us have been working from home. Our hats are off to all of you who are continuing to be productive in this strange new reality of a home office.

Working from home is something that works easily for some and not for others. For all who are successful and for those of you who are still struggling with this new workplace environment, kudos to all of you for still having your hair, or most of it.

Fighting distractions and interruptions, spouses, children, news on the pandemic, isolation from family, friends, and neighbors, while dealing with work-related isolation (that is to say the lack of collaboration among coworkers) are a few of the complications occupying our minds while coping with this new lifestyle. As we attempt to tackle this lifestyle change and the overwhelming desire to get out of the house, our mental state may be deteriorating. We begin to stress and depression may be sneaking in. Don’t let it and remember you’re not alone.

It’s not surprising that there are a number of blogs and articles on the internet relating to this. A caveat to this quantity of information is that during this pandemic and the rise in unemployment, not all stress relieving suggestions are practical. One blog in particular, by Amy Morin has some simple technics which, in our focus to stay productive in our jobs and trying to stay sane, we may have overlooked. Below are Amy’s 5 stress relievers that can be done at your desk:

1. “Progressive Muscle Relaxation”

News media, as they should, have been continuously reporting on the current pandemic crisis. For the majority of people this increases stress levels.

This increased stress, as Morin points out: “can cause you to tense certain muscles in your body. Over time, you may become accustomed to that tension that you stop noticing that your muscles are tight. Sore muscles-especially in the neck and shoulders can stem from chronic tension. Progressive muscle relaxation lets go of that tension.

Spotlighting the neck and shoulders, try slowly tensing and relaxing your muscles. Focus on one group at a time beginning with your toes and moving up to your neck. Below are a few links which may help. Remember, like everything, it takes practice to master progressive muscle relaxation.

Below are a few of the many sites to get you started:

https://grokker.com/yoga/video/yoga-at-your-desk/54ad8d5cbdf702ee66cd4fe8

I have used the next suggestions for years and they actually work for me. Once again, they take practice.

2. “Visualization”

Visualization can be a very powerful relaxation tool. Although you can’t physically be at your favorite peaceful place or you place of Zen, taking a momentary mental break in your chair can do wonders to relieve stress while you go to your favorite place.

Remembering that favorite place, Morin suggests: “Close your eyes and spend a few minutes imagining you are there. Engage as many senses as you can by thinking about what you’d see, hear, smell, touch, and taste as if you were really enjoying that relaxing scene.”

Taking this little mental vacation can relax both your body and mind reducing stress. Try visiting these sites, and there are more:

https://www.verywellmind.com/visualization-for-relaxation-2584112

3. “Deep Breathing”

Of all the subconscious activities our body performs, breathing is one many people never give a second thought too. This is a completely automatic life function. Yet when we allow ourselves to be aware we discover it can have an impact and it affects our bodies. Performing routine deep breathing exercises has the ability of yielding a natural relaxation. In her article, Amy Morin reports: “Deep breathing is so powerful that The American Institute of Stress even named it `the best stress reduction technique’ of all.”

The act of deep breathing increases the oxygen supply to the brain. This increased oxygen supply stimulates a state of calmness, which in turn relaxes the body. A calm body and brain fosters greater creative thought and increased productivity. Slow deep breathing combined with visualization skills can provide immediate stress relief.

Below are just a few links that may help:

https://www.webmd.com/balance/stress-management/stress-relief-breathing-techniques#1

https://www.verywellmind.com/how=to-reduce-stress-with-breathing-excercises-3144508

https://www.uofmhealth.org/health-library/uz2255

https://www.stress.org/take-a-deep-breath

4. “Engage Your Senses

Another way to refocus our attention and to escape the deep dark hole of worry is engaging your senses. Reflect on which of our senses is the most helpful and push aside the ones that are hindering us.

This is a very useful suggestion but requires experimentation as to which activity is helpful. Some examples might be; eating some of your favorite candies, squeezing a stress ball, looking at family pictures, or, listening to music. I find it music very relaxing and at the same time very creatively stimulating. Once again, with a little practice one can find the sensory trigger that provides the most stress relief.

Additional sites to help with sensory stress relief:

Find sensory stress relief right now

https://psychcentral.com/blog/quick-stress-relief-tips-through-your-5-senses/

5. “Laugh”

Amy Morin reminds us: “It’s true what they say-laughter really is the best medicine.” There is nothing more refreshing than a belly laugh, it eases stress and tension while increasing circulation. Laughter is known to increase endorphins in the brain while producing relaxing and almost euphoric feelings.

Though surrounding yourself with funny pictures, humorous cartoons and silly jokes are all useful tools, don’t forget to have or develop a willingness to laugh at yourself. This can serve as a good reminder not to take life too seriously which can serve you well in reducing stress.

https://stress.lovetoknow.com/Humor_to_Relieve_Stress

https://www.verywellmind.com/maintain-a-sense-of-humor-3144888

https://www.psychologytoday.com/us/blog/high-octane-women/201205/quotes-about-stress-will-tickle-your-funny-bone

While researching for this blog and trying to come up with solutions for the different varieties of stresses we are all attempting to confront at this time, I came across a number of sites with a wide array of suggestions and antidotes, but unfortunately most were difficult to apply during a pandemic and a stay-at-home order. There is one suggestion which was recurring and was felt to be important and perhaps forgotten by some of us:

This is a temporary situation and it will get better, just keep everything in perspective, relax and smile.

Finally, I have seen videos and have read articles about chair dancing. As silly as it sounds, it is refreshing and a great stress reliever. If this sounds interesting to you attached is a website link as an example:

WARNING: make sure the first time you try this, no one is home. My spouse happened to walk into my office and saw me. I can’t even describe her facial expression. I have since not lived this down. At least be sure they know what you’re doing before you surprise them. Remember to keep a sense of humor about yourself.

A CALM BRAIN! Remember a calm brain is the key to a calm body and also helps us to learn, to be creative, and to be productive. So keep your hair in place.

WARNING!
Don’t let this happen to you.
Even the best hairstylist can’t fix this.
Be positive and laugh, a lot!!

Works Cited:
Morin, Amy. (2020). 5 Powerful Stress Relievers You Can Do At Your Desk. Retrieved from:      https://www.forbes.com/sites/amymorin/2015/07/29/5-powerful-stress-relievers-you-can-do-at-your-desk/#170480ca3cc6

Image Sources:
Faley, Chris. (1995). Tommy Boy. Paramount Pictures, https://milwaukeerecord.com/film/holy-schnikes-lakefront-brewery-will-screen-tommy-boy-avalon-theater-february/

Unknown. (2019). 5 Facts about the Hairless Sphynx Cats. Retrieved from:  www.lifewithcatman.com/catman/facts-about-sphynx-cats/

Additional References:

https://www.verywellmind.com/the-stress-of-working-from-home-4141174

https://www.psychologytoday.com/intl/blog/minding-the-body/201111/10-solutions-work-home-stress

https://time.com/5804130/covid-19-social-distancing-wellness/


The Disabled and Covid-19

By: Chas Barrie, Accessibility Advocate
Date: 04/08/20

Are Your Prepared?

We seem to be consumed with information about the COVID 19 outbreak throughout the world, and especially here in the United States. As the reality and the seriousness of the virus is realized after being confronted with the number of cases and the death rates throughout the world and such cities New York and others, it becomes apparent this threat is universal and real.

As previously stated, this virus doesn’t discriminate. The Corona virus does not care about race, gender, political affiliations, how educated you are, how much money you have, or whether you are disabled or not.

The COVID-19 virus crisis has the majority of people alarmed and looking for ways to protect them from becoming infected. In his blog for Forbes magazine, Andrew Pulrang writes: “One group faces additional risks and consequences, as well as anxieties: [people with disabilities] and/or chronic illness.”

The website arcmi.org states: “One in four adults in the US has a disability. Globally, well over 1 billion [people have disabilities].” This site also informs the reader: “[Persons with disabilities] require the same resources and assistance that everyone does-adequate information and instructions, social and medical services, and protection infection by those who contract the virus. However, some persons with disabilities may have needs that warrant specific steps by the public and private sectors that may not be necessary for others.”

In this article Pulrang provides 5 points to keep in mind for people with disabilities

1. The people most often cited as being at serious risk are largely, by some definition, people with disabilities.

Having a disability doesn’t necessarily mean you’ll have a greater chance of contracting the coronavirus. From the onset of the outbreak health officials warned those with underlying conditions were a greater risk, therefore the many people with specific disabilities or chronic conditions must be aware that the virus poses a much higher risk for them.

With every news report, or each time a health official voices a new concern about COVID 19, the anxiety for the person with a disability elevates. Every time there is a statement in the media attempting to reassure the public that this virus isn’t that deadly because it mainly kills or injuries high-risk people, for the disabled and the elderly this is alarming. As this continues, the lines between the chronically ill and the disabled become hazy, resulting in unfair stigmatizing. All the fear factors surrounding this pandemic, for people with disabilities this may be resulting in significantly increased anxiety, and anxiety itself poses a number of health risks.    

2. It can be harder for people with disabilities to take prudent steps to protect themselves from the coronavirus outbreak.

It is logical to be prepared for an outbreak and to follow a plan, but many people with a disability or the chronically ill have experienced medical bureaucracy and difficulties with the response and flexible assistance they have needed. This has created an atmosphere of distrust for following effectively any previous recommendations.

It can be difficult for some people with a disability to isolate themselves as easily as recommended. For some there is a need for daily, direct one to one personal help for everyday care.

Normally grocery shopping can be an exhausting challenge for the disabled. Besides being extra demanding, in many cases this also requires arranging transportation.

For the non-disabled, frequent washing of hands is often not given a second thought, but for those with physical restrictions, along with possible interrupted service or environmental barriers, this simple task becomes difficult.

Finally, people with chronic health conditions worry about maintaining an adequate supply of needed medications. During normal times just keeping up with scheduled refills is challenging, but this becomes even more stressful during a public crisis.

3. COVID-19, coronavirus threatens not only the disabled’s health but their independence. 

To begin his third point, Pulrang explains:Some [people with disabilities] depend on regular help and support from others to maintain their independence-that is, their ability to live in their own homes, rather than in nursing homes, group homes, and other institutional settings. Outbreaks of communicable diseases can disrupt these services. Aides and caregivers may become sick themselves, or the risk of catching or spreading illness may require aides and caregivers to stay home, interrupting the [people with disabilities] services.”

During an outbreak, it is important to consider that an organized care facility may not necessarily be a safer place for the elderly and disabled. Although these facilities have an abundance of medical assets, one person with a disability with one or two cautious and prepared caregivers, may be better off at home with limited, and controlled isolation. This means we need to reexamine the views we may have about safety for various types of disabilities.

The risks from COVID-19 for the disabled and the elderly may not be from the actual disease, it may be from the resulting interference in normal services and the changes in daily routines.

4. This outbreak has the potential to add new perspectives and urgency to a number of long-term disability issues.

“Workplace accommodations and flexibility…”

For all of the people with a disability or chronic illnesses who continuously fight for flexible work arrangements like reasonable accommodations, and telecommuting, with the arrival of the coronavirus online technologies are now being seriously considered with a new appreciation by employers for the possibilities they offer for many employees, and not just the employees with disabilities and chronic health conditions.

“Centralized care in institutional facilities vs. decentralized home and community based services…”

In his blog, Pulrang notes:preconceived ideas about the relative health risks of centralized care and decentralized home care are being viewed now in new ways. Many disability activists have for years contended that the purported safety of nursing homes and group homes for elderly and disabled is overrated.” Now that we are in the midst of the Corona pandemic Pulrang continues: “the fact despite the apparent advantages of more controlled, medically-supervised environments, there are also health risks involved in housing people with health vulnerabilities in hospitals and other kinds of care facilities.”

“Health care organization and affordability…”

One of the most polarizing topics in politics at this time is health care. While the politicians and the public alike have strong ideas concerning the cost and structure of the health care system in America, for the public to be able to control contagious disease necessitates the immediate access to medical care, reasonable cost and with minimal red tape. While developing a balance between taking preventative steps and the associated high medical bills, the public suffers.

5. You can help a lot just by being aware and sensitive to the specific risks and obstacles faced by people with disabilities in an outbreak of contagious illness like COVID 19.

Remember that panic is not beneficial. Do not diminish the risks or attempt to talk a person with a disability out of being apprehensive about their health risks. Considering the person with a disability’s possible past experiences, their concerns may be justified. In all likelihood it is not getting sick that worries them, it is the support system they have to rely on.

The disabled need everyone they associate with to allow as much emotional support as possible and as they may need. Pulrang believes: “now is not the time to tighten the reins, or try to impose what you think is best for the [person disabled].”

Take their concerns seriously; remain healthy so you are able to help.

Arcm.org reminds its readers: “[Persons with disabilities] must be able to receive timely and accessible information about steps they must take to minimize the risk of infection; what actions are being taken that may affect their living arrangements; and the availability of services, caregivers, medication, and other changes critical to their personal planning and preparedness that may directly impact their daily life.”

This statement continues on:” Government entities must provide communication that is equally effective to all at all times. This includes ensuring that all televised public announcements are live-captioned and provided by qualified sign language interpreters. Websites and other digital and electronic information must be accessible to people with vision, hearing, learning, and dexterity disabilities, and to individuals who do not read print because of their disability.”

There is much more information on the concerns about COVID 19 and the disabled on line. Below there are listed a small sampling of available websites for additional information.

Works cited:

Pulrang, Andrew. (2020). 5 Things to Know About Coronavirus and People with Disabilities. Retrieved from: https://www.forbes.com/sites/andrewpulrang/2020/03/08/5-things-to-know-about-coronavirus-and-people-with-disabilities/#784012ce1d21

[Noted: the termed Disabled people or persons in this articles has been edited to comply with NYS People First Policy]

Michigan, The Arc. (2020). Planning & Response re: COVID-19 for persons with disabilities. Retrieved from: https://arcmi.org/2020/03/04/planning-response-re-covid-19-for-persons-with-disabilities/

For additional Information:

https://www.disabled-world.com/news/america/covid19-treatment-rationing.php

https://www.disabled-world.com/health/influenza/coronavirus/2019-coronavirus.php

https://www.newmobility.com/2020/03/disability-specific-recommendations-for-covid-19/

https://www.eeoc.gov/eeoc/newsroom/wysk/wysk_ada_rehabilitaion_act_coronavirus.cfm

https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html

https://www.eeoc.gov/eeoc/newsroom/wysk/wysk_ada_rehabilitaion_act_coronavirus.cfm