The Great Outdoors and Living With a Disability

By: Jacey Enget, Board Member of Youth Empower Social Status YESS

I am a twenty-nine year old woman who was born and raised under the great western skies of central North Dakota, where my parents instilled in me a very deep love for the outdoors. The love I have for the outdoors is a small, yet very large part of my life and who I am. I give my readers this explanation before I go any further in writing this blog, because I know that this is not the first thing someone outside my circle of friends and family notices about me. I use a power wheelchair as my main form of getting around. This is because I was born with spastic cerebral palsy. Now that I have given you a small back story, I would like to tell my readers a short story about one of my passions in life the outdoors.
Growing up, I never let the words ‘no’ or ‘I can’t’ get in my way. If I wanted to try something new my parents have always helped me figure out a way for me to do that said task. Those tasks include but are not limited: to anything from riding a horse, to getting in a sit-ski and that ski getting tied behind a boat and allowing the boat to take me around the lake.
I have been riding horseback since about the age of two, up until I was around the age of seventeen. This was a task that took lots of energy and help from myself and others. When I was younger and I wanted to go for a ride, someone would have to lift me into the saddle and either sit behind me or someone would have to stand on each side of me while I or someone else would lead the horse around my grandparents’ yard. Now once I am lifted into the saddle, I am able to ride on my own. This is because I asked my dad if we could have a saddle made that straps my torso in and has a back rest, thus making it possible. I don’t remember the first time I got on the back of a horse but I do know I got on and never looked back, whether I’m riding with or without the help of others.
Earlier, I mentioned how the words ‘no’ or ‘can’t’ will never get in my way and I think people will realize that this is true when I tell them that I have been water skiing since the age of seven or snow skiing since I was eleven. Two years ago, my parents went to Red Lodge, Montana, so my dad could go skiing, while mom went sight-seeing. My brother and I went to spend the weekend with our grandparents. That Saturday night when my parents called to talk to us, dad got on the phone and asked if I wanted to try snow skiing. Being slightly confused, while also ecstatic I said, ‘yes’! I then I asked him how? He told me that while he was skiing that morning, he had seen a man skiing all on his own while sitting in a sit-ski similar to the one I use when water skiing. At this point I was sold. If you haven’t realized by now, I am a bit of an adrenaline junky. Two years later, the rest was history. I was strapped into a ski and taken down the mountain, and I have been skiing ever since.
Technically, I should have put the next part of this story before snow skiing. I started water skiing first around seven years old. Since I wasn’t as strong then as I am now, I placed it here in this post. Now I am going back in time a few years, so first let me explain how someone who uses a wheelchair can ski behind a boat. This event is called ‘Escape to the Lake’, and it is put on by NDAD (North Dakota Association for the Disabled), out of Bismarck, and a group out of Huston Texas called ‘Texas Adaptive Aquatics’. Two other groups of volunteers ‘Sporting Chance’, also out of Bismarck volunteering to transport participants in and out of the water, into a sit-ski that is tied behind a boat. You are then paired with two volunteer skiers who ski on either side of you. These skiers’ range in age from ten to late twenties or early thirties. They are there to help prevent you from falling into the water once we are up and going, around the lake. This group is consisted of the team of kids, their coaches, two boat drivers, and their announcer. They are a ski show team out of Aberdeen, South Dakota, called the ‘Aberdeen Aqua Addicts’. This event is done in Center, North Dakota, at Lake Nelson. This is a lake filled with discharge water that comes out of the nearby power plan. This means that the water is always warm and does not freeze in the winter. The water stays on average at about ninety-eight degrees year-round. This is perfect for someone like me who deals with muscle spasms, as they can be very painful. We are still able to have fun like everyone else, and still stay safe and comfortable. Once again, I started water skiing and never looked back.
My family is also a big hunting family so naturally things are no different for me; it just means there has to be a few adaptations. I went through Hunters Safety like everyone else in my age group that chooses to take the course and I passed with flying colors. The adaptations that I need take place in the field. They start like this: during bow season in North Dakota, if you are diagnosed with a condition that hinders your ability to lift or hold a compound bow, you can use a crossbow, whether it is a lifelong or short-term disability. You just have to go to your doctor and have them fill out a form and write a note that states how long you will need to use it for and then take it to your local Game and Fish office. The next big change that makes it possible for me to enjoy hunting is this: as long as a doctor documents that I have a physical condition that makes it hard or impossible for me to get out of a vehicle and hike for miles. I am able to hunt from the window of our ATV during rifle season. I drive along through the trails that a person would normally walk through. At the age of sixteen, I was able to start hunting with ‘Sporting Chance’ during North Dakota bow season using a blind, a structure that you sit in hiding you from the animal. My family has the perfect land set up for deer hunting in the north western corner of the state. You just have to know where to go and be willing to put in some work. It also takes some patience as you may have to wait quite a while for the animal to show up. So, as you can see I love the outdoors, and I don’t let my disability get in my way.

My Perspective on People on the Spectrum

With Autism awareness month is coming to a close, I wanted to reflect on my own Autistic diagnosis. As a guy on the spectrum, I haven’t always been very lucky when it came to fair life experiences. I’m one of those who had to branch out and create his own luck. The thing his even Autistic folks don’t always appear as such, so I would always be taken in a way that I don’t see myself. This is especially true when you’re not very well known in a place in a place where ya reside and this is not just me.
Autistic folks in many places don’t get represented well, especially with groups like Autism *******.   In my opinion, Autism ****** is a hate group that is behind all these misconceptions about Autistic folks. Some things for example include that it needs to be cured and to make things worse. They like to make sure Autistic folks don’t have a saying in much or our voices are not heard. Groups as such are a hate group and funding to such needs to stopped in its tracks.
We as a society lack open mindedness and we insist on judging the ones that stand out the most. But, those who know me best, know that I’m not afraid to stand out. I do this while I try to be the best I can be. I like to be free from things that hold me back, due to misconceptions. I like to enjoy myself.

Blog written by Jon Fettig, board member of YESS – Youth Empowering Social Status

WHAT TO KNOW ABOUT AUTISM SPECTRUM DISORDER

Autism Spectrum Disorder (ASD) refers to a group of conditions characterized by difficulty in social functioning and repetitive behaviors or stereotyped interests. The term “spectrum” connotes that, within this category, there is tremendous heterogeneity. In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder. They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified, and Asperger syndrome. Some individuals have an intellectual disability while others have average or above average intelligence. Each individual presents with a unique profile of strengths and needs.
The latest CDC data states 1 in 59 children are diagnosed with ASD, affecting 1% of the global population. According to Autism Speaks, autism’s hallmark signs usually appear by age 2 to 3 and can often be diagnosed as early as 18 months. Some associated development delays can appear even earlier.
The more we understand about the cause and expression of autism, the more we will be able to support children with autism and their families. While there is currently no cure for ASD, research shows that early intervention treatment services can improve a child’s development. This is why the Autism Center at the Hebrew University is dedicated to integrating and advancing research, training, clinical services, and community engagement, helping individuals with ASD and their families in Israel and around the world.
At Israel’s first university-based autism center, over 20 faculty experts in fields ranging from Genetics and Neurology to Occupational Therapy and Nutrition actively engage in research; provide customized therapies to help improve the quality-of-life for ASD individuals; and train the next generation of physicians, researchers, and allied health professionals in the quest to treat, screen, and, ultimately, prevent and cure ASD.

Written by the Hebrew University of Jerusalem

Isolation is Already Familiar to Some

By Jon F. Advisory Board Member of YESS (Youth Empowering Social Status)
As an Autistic guy, I always knew that I was unique, even though that I’ve before mentioned, that were all unique. I would always feel isolated, a lot. The thing is before I didn’t know how to express myself very well; to highlight those differences in a way others can understand. I always thought to myself, while things were going through my mind that other folks would find value in me based on my insights, not only from experience, but also how I look at things. I often would notice that I’m the only one trying to find ways to connect in places, where I later would find out, I didn’t really belong. I would then realize that I don’t fit in well, because I’m smart in a way that makes me special. At first it was hard to understand this, but then realized I should just make the most out of what I have as resources. That’s even more true today, with this Convid-19 going around. I’ve realized it’s best for me to find ways to use things to my advantage, and think of ways to think positive about things. I would do this while realizing things, as they are, and using that to make way to my own reality as the way I saw it. One resourceful thing I realized is I have some connections, and it would maybe be enough to bridge that gap from where I would’ve been, to where I found more joy in experiencing. Well one thing I didn’t find joy in is being isolated, especially being isolated under circumstances that I wouldn’t want to be isolated in. With this quarantine thing of being isolated from others, I would only hope that folks would come to understand what that’s like. For me regardless of how things have recently been for me, I’m content with myself. It’s not fun feeling trapped in situations, ya know, that ya don’t belong. This is why home for me is not a specific place, but a feeling while enjoying things out of the ordinary.

Telehealth and People with Disabilities

Telehealth and People with Disabilities

We have all heard of telethons before, raising money for a charitable cause. Have you heard of telehealth and the benefits it can have for people with disabilities? Telehealth is a valuable tool to help improve access to care, reduce costs, and enhance patient satisfaction.
Telehealth
Over the years electronic health records (EHR) have transformed how medical offices and hospitals treat patients. EHR’s are real-time, patient focused medical records that make information available to authorized users. This allows medical professionals to make well-informed care decisions. Telehealth is another combination of when health care and technology connect. Telehealth allows a patient to receive care with the use of live-interactive videoconferencing, remote monitoring, store-and-forward imaging, and provider education. Telehealth is available anywhere this technology is available, which is important in rural communities that have limited access to health care already. Accessible treatment for patients using telehealth can include medical advice, diagnoses, and prescriptions for a large range of conditions. This helps to cut barriers some patients may have when it comes to taking care of their health, such as distance, traffic, and inflexible working hours. Telehealth helps catch medical problems early on and helps stop them from becoming more serious. Telehealth is also available 24 hours a day, 7 days a week. Connecting with a doctor by phone, video or secure email can cut an unnecessary trip to the emergency room. Telehealth can have a great impact with rural providers by connecting rural providers and their patients to services at distant sites and promoting more patient-centered health care. This can be valuable to people with disabilities living in rural communities.
Research in Rural Communities
Research at the Rocky Mountain ADA Center found that access to care in rural areas is limited and telehealth services are currently used for a range of services. This research investigates how the disability community is utilizing telehealth in rural areas. The Rocky Mountain region of the ADA National Network represents a large rural population. Through these studies, clinicians have recognized the benefits of telehealth for individuals with disabilities. These studies mention that most people with disabilities who have received care via telehealth had a positive opinion on their experience. Some people with disabilities reported experiencing functional improvements in motor performance, language ability, self-care skills, mental status, and quality of life. Many viewed telehealth as an emerging tool to improve access to care, reduce costs, and provide a better patient experience. The larger benefits centered around people with chronic health conditions, helping them better self-manage their care. There was also a large impact on mental health services, where being in their own comfortable environment allowed for better care.
Barriers
Broadband infrastructure can be one of the largest barriers when it comes to offering telehealth access. Not everyone in rural areas may have access to the internet, thus impacting their ability to take part in video consultations, send health information, and tracking their health at home. According to the 2019 Broadband Deployment Report, 14.5 million people or a quarter of the population in rural areas do not have access to high-speed internet. Another barrier can be the costs associated with telehealth services. Consumers pay for telehealth services through reimbursement models such as Medicare, Medicaid, or private health insurance programs. The lack of reimbursement can be a key barrier to use telehealth services for people with disabilities.
Telehealth saves time and manages your health in a streamlined care experience. This can lead to better health outcomes for more and more people. Telehealth also has a great potential to have a positive impact on the quality of rural individuals with disabilities’ lives.
Mike Shea Thu, 03/05/2020

Talk to Us, Not Whoever Is with Us

I had never noticed this before, but it happened and it was uncomfortable. I met our Executive Director, Royce, at a local hamburger joint. I was only there to have him sign some checks, not to eat. Royce, however, decided to have lunch. We had been seated at our table for a few minutes when one of the wait staff came and asked “how are you doing today?” I looked up and he was looking at me so I said “I am great, how are you?” He assured me, while never taking his eyes off of me, that he, too, was fine and then asked me how everything was tasting and could he get us anything else. Remember, I was not the one eating. I said I did not need anything and looked at Royce to see if he needed anything else and he said he did not. Still looking straight at me, the staff member said ok and went on his way. All this while, I was very uncomfortable because this staff had stared directly at me the whole while. I did not say anything, but wondered to myself did I had something on my face, in my teeth, in my hair that shouldn’t be there?? After the wait staff left our table, Royce asked me if I was aware of what had just happened. He had noticed something, too, and it had nothing to do with me. Royce uses a wheelchair and he pointed out to me what had really just happened. It can be hard to witness, but when you’re at a restaurant and see someone with an obvious disability, watch how the wait staff interacts with them. More often than not they’ll ask questions of whoever they’re with – not them. Not once did the waiter look at Royce, address him or acknowledge in any way that he was even in the room. I felt awful.
Make eye contact; never avoid someone with a disability. People who fear they could do or say something unintentionally disrespectful toward a person with a disability sometimes default to ignoring that person altogether. Never do this. People with disabilities are human, and their existence deserves acknowledgement. Any human would feel terrible being ignored; it’s never the right choice. The number one thing to remember is to treat someone with a disability how you would want to be treated. Everyone appreciates respect and etiquette, not just people with disabilities.
If you would like a free presentation on the topic of Disability Etiquette, contact The Dakota Center for Independent Living at 222-3636.

Talk to Us, Not Whoever Is with Us
By Carol Cristilli, Independent Living Advocate, Dakota Center for Independent Living
I had never noticed this before, but it happened and it was uncomfortable. I met our Executive Director, Royce, at a local hamburger joint. I was only there to have him sign some checks, not to eat. Royce, however, decided to have lunch. We had been seated at our table for a few minutes when one of the wait staff came and asked “how are you doing today?” I looked up and he was looking at me so I said “I am great, how are you?” He assured me, while never taking his eyes off of me, that he, too, was fine and then asked me how everything was tasting and could he get us anything else. Remember, I was not the one eating. I said I did not need anything and looked at Royce to see if he needed anything else and he said he did not. Still looking straight at me, the staff member said ok and went on his way. All this while, I was very uncomfortable because this staff had stared directly at me the whole while. I did not say anything, but wondered to myself did I had something on my face, in my teeth, in my hair that shouldn’t be there?? After the wait staff left our table, Royce asked me if I was aware of what had just happened. He had noticed something, too, and it had nothing to do with me. Royce uses a wheelchair and he pointed out to me what had really just happened. It can be hard to witness, but when you’re at a restaurant and see someone with an obvious disability, watch how the wait staff interacts with them. More often than not they’ll ask questions of whoever they’re with – not them. Not once did the waiter look at Royce, address him or acknowledge in any way that he was even in the room. I felt awful.
Make eye contact; never avoid someone with a disability. People who fear they could do or say something unintentionally disrespectful toward a person with a disability sometimes default to ignoring that person altogether. Never do this. People with disabilities are human, and their existence deserves acknowledgement. Any human would feel terrible being ignored; it’s never the right choice. The number one thing to remember is to treat someone with a disability how you would want to be treated. Everyone appreciates respect and etiquette, not just people with disabilities.
If you would like a free presentation on the topic of Disability Etiquette, contact The Dakota Center for Independent Living at 222-3636.

By Carol Cristilli, Independent Living Advocate, Dakota Center for Independent Living

Misconception #2 – Unfunded Mandate

The next misconception is that the ADA is an “unfunded mandate.” A few business owners have muttered this phrase upon learning they have responsibilities under the ADA . I understand their point of view; it can cause an expense they did not expect. Yet, the law has existed for almost 30 years at this point. In most cases, the law pre-dates many business decisions. People should understand that the ADA is a Civil Rights law, modeled after the Civil Rights Act. In the 1960’s, I’m sure lots of people were bemused to find out they couldn’t provide separate facilities for white people and black people. These people probably moaned about the unfunded mandate as well. Now we look back on that kind of thinking with disdain.

How is it any different to exclude a person because life chose them to incur a disability? The law is not new and exists to protect a huge class of individuals from systemic discrimination. One’s obliviousness to the law should be the focus of their contempt if they believe the notion of an “unfunded mandate.” The ADA has a lot of limitation language in it, such as the phrases “readily achievable” and “reasonable.” A business does not have do anything that will cause it to fundamentally suffer or go out of business. Many physical access improvements benefit businesses in the long term. The bottom line is that ADA is a law which has required access for a very long time. It is the responsibility of a business to know what laws they must obey and plan/budget accordingly.

In the public sector, government exists to serve the people, all people, including people with disabilities. Program Access, the standard to which local governments get held, mandates serving people with disabilities using all the resources they have. Not all existing facilities need remodeling for access if other means can provide the same opportunities to people with disabilities. New buildings need to get designed with ADA compliance in mind, but not all the older stuff needs to get changed unless there is no alternative.

By Chris Murphy

MythBusters: The Service Animal Edition

By Maggie Sims on Feb 06, 2020 10:35 am
MythBusters: The Service Animal Edition

Though the ADA has been in place for almost 30 years now, there is still confusion and misconceptions about service animals (SA). This is true not only for public entities that interact with SAs, but also for handlers of SAs. Let’s look at 10 questions that we regularly receive at the ADA Center and uncover the myth and the truth!

1. If a service animal handler allows others to pet the dog, it’s not really a service animal.
False. It’s NEVER okay to pet a SA without the handler’s permission. But sometimes the handler will give approval to pet the SA. There is no legal prohibition against petting the SA. Only the limitations the handler sets (Why you Can’t Pet Service Dogs). The test of whether it’s a ‘real’ SA or not is if the SA is trained and under the control of the handler. So the SA should not be running around, barking excessively, relieving itself inappropriately. If this happens, the handler should take action to stop these behaviors. Remember that a dog – even one that is well-trained – is still a dog, and can be distracted from its task. The handler has the responsibility to get the animal back in control, or to remove the SA.

2. Only certain breeds of dogs, such as labs and retrievers, are recognized as service animals.
False. Any breed of dog can be trained and MUST be allowed into a facility if the handler has verbally verified that it is a service animal that has been trained to provide a specific ‘job’ or task for the owner. Some examples of tasks include a dog that has been trained to lay across the chest of someone having a seizure, mitigating the duration of the seizure. Another task is alerting and interrupting the handler with autism of repetitive motions or dangerous actions.

3. All service animals have been professionally trained and have some kind of documentation to verify that.
False. The ADA does not require that a professional service be used. A person with a disability can train its own dog to perform a task related to their disability.

4. A person with a disability can need more than one service animal.
True. Some persons may have more than one disability, and each disability may need a separate SA to perform the needed task.

5. All true SAs are certified and listed in a national registry maintained by the U.S. Department of Justice.
False. There is no documentation or certification required. There is also no federal registry for service animals.

6. If a SA is disruptive in a public place, there is nothing the business can do about it.
False. There are reasons that a SA can be excluded or asked to leave a facility. Staff do have recourse if an animal is out of control or changes the nature of the services provided.

7. If I take my SA to a hotel with me, I can leave it in the room while I go out to eat.
False. To meet the definition of a SA, the dog must be under the control of the handler at all times. If the SA is left in the hotel room by itself, it is not under the control of the handler.

8. SAs are allowed in the shopping cart along with my groceries.
False. Grocery carts are for groceries.

9. Federal agencies, such as the U.S. Post Office and the Veteran’s Hospital, do not have to follow the ADA and thus don’t have to allow SAs into their facilities.
True AND False (Trick Question). Federal agencies DON’T have to follow the ADA, but they DO have to follow the Rehabilitation Act, which has its own requirements.

10. Private apartments also have no ADA requirements to meet.
True AND False (ANOTHER Trick Question). The ADA does have requirements for the public access portion of apartments (i.e., a business office that is open to the public). But private housing is covered under the Fair Housing Act. It has different rules and protections than the ADA. This is also true for airlines (Air Carrier Access Act) as well.

Misconception #3-Proof of Disability

The last concept I wanted to pose as a misconception is that of the need for “proof” of disability. Employers have a right to ask for proof from a medical professional when the employee’s disability is not obvious and they are requesting a change. That’s pretty much it when it comes to people with disabilities needing to prove they have a disability.

I’ve heard arguments, mostly around service animals, that people with disabilities should have to carry documentation to prove disability so that it’s easier for everyone else. As a Civil Rights law, congress was very careful not to repeat the failings of the past. There was once a time in Germany when people of the Jewish Faith had to identify themselves and provide proper documentation to take part in society. That did not work out very well for those people.

Requiring documentation is also a form of control, a barrier. Not everyone with a disability lives in a household with disposable income. Not everyone with a disability has health insurance to assist. Not everyone with a disability lives near the correct specialist to diagnose the reality they may have lived their entire life.

Currently, I’m trying to get scheduled for an EMG to get documentation of my disability. The purpose is to supply to the international governing body for Paralympic Cycling. My experience is that it’s difficult to find a specialist who will return a phone call or has time for me within 6 months. Insurance company representatives and receptionists at medical offices can be rude. It’s not a fast or enjoyable experience trying to schedule this 30-minute test. I can’t imagine how disempowered and frustrated I would feel if I needed to go through this to go to the movies or out to eat. There will always be people who take advantage of the system for their personal gain. Requiring the law punish those who abide by it because of those who don’t is not the answer.

These 3 examples are the stand-out misconceptions I encounter most often. The truth of the ADA is it’s a very difficult law to understand. The more you understand the law, the more you realize that it was written to protect all people affected by it. The entities covered by the ADA have various responsibilities and their own rights under the law. Every circumstance is different. The generally “vague” language of the ADA was purposeful to be apply to a countless variety of human experiences.

By: Chris Murphy

Misconception #2 – Unfunded Mandate

The next misconception is that the ADA is an “unfunded mandate.” A few business owners have muttered this phrase upon learning they have responsibilities under the ADA . I understand their point of view; it can cause an expense they did not expect. Yet, the law has existed for almost 30 years at this point. In most cases, the law pre-dates many business decisions. People should understand that the ADA is a Civil Rights law, modeled after the Civil Rights Act. In the 1960’s, I’m sure lots of people were bemused to find out they couldn’t provide separate facilities for white people and black people. These people probably moaned about the unfunded mandate as well. Now we look back on that kind of thinking with disdain.

How is it any different to exclude a person because life chose them to incur a disability? The law is not new and exists to protect a huge class of individuals from systemic discrimination. One’s obliviousness to the law should be the focus of their contempt if they believe the notion of an “unfunded mandate.” The ADA has a lot of limitation language in it, such as the phrases “readily achievable” and “reasonable.” A business does not have do anything that will cause it to fundamentally suffer or go out of business. Many physical access improvements benefit businesses in the long term. The bottom line is that ADA is a law which has required access for a very long time. It is the responsibility of a business to know what laws they must obey and plan/budget accordingly.

In the public sector, government exists to serve the people, all people, including people with disabilities. Program Access, the standard to which local governments get held, mandates serving people with disabilities using all the resources they have. Not all existing facilities need remodeling for access if other means can provide the same opportunities to people with disabilities. New buildings need to get designed with ADA compliance in mind, but not all the older stuff needs to get changed unless there is no alternative.

Submitted by Chris Murphy