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.
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
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.
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.
The American with Disabilities Act was passed in 1990. (29 years old)
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:
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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:
Stay physically Active
Stay socially active
Participate in mentally stimulating activities i.e. learn languages, continue education
Quit smoking and minimize drug use
Eat a healthy diet (research has found that a Mediterranean style diet is most beneficial)
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.”
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.
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.
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.”
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:
“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.”
“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.”
“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.”
“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.”
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:
“Use your teachers as your tutors”
“Lower your expectations”
“Start early in the day”
“Establish a structure”
“Give your kids snacks”
“Keep the little ones out of the room”
“Schedule free time after schoolwork, especially if your kids are ahead”
“Find online resources you trust”
“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.
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”
Offer opportunities for expression
Prioritize coping and calming skills
Build new routines
Foster connections (from a distance)
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
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.
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.