Home and Community Based Supports: How They Bring Freedom and The Need to Expand Them

By Lexi Westerfield

 

            As an individual with multiple physical, psychiatric, and developmental disabilities I rely heavily on home and community based services and supports in my every-day-life to remain as independent as possible and to continue to seek my vision for a good life. Achieving a  vision for a good life is what I would hope would be an aspiration for all people with disabilities. whether it be to have a job, be more active in the community, or work on becoming less dependent on family, the right home and community based supports are crucial for success.

            I don’t want to go too much further into how much an individual can excel with this kind of care and support without pointing out an important point some people forget about when it comes to home and community based supports. They give and should always give those of us with disabilities freedom. They set us free from institutions or at least they should. They give us choice or at least they should. Look back. I mentioned that vision for a good life. Home and community based services let us have that vision, but it’s just the beginning. It’s important that we expand home and community based services and I will tell you how.

            First, it is important that we see a need and meet it. I want to tell you how my home and community based services help me and then how I am hindered

I have done so much with the help of home and community based services. I have attended college, I have lived independently, yet; I have also lived at home with the opportunity to be less dependent on family. I have even had assistance finding resources which lead to my job. I get assistance with my activities of daily living, I get the opportunity to explore the community and do things I enjoy around town, and I get to meet some great people in the process. This may sound like sunshine and rainbows, right?  Nope.

            I have been hindered. I have missed out on opportunities due to shortages in  staff and resources. Low pay, lack of training, and other disparities make staffing difficult for providers. Those factors can also lead to abuse, neglect, and exploitation in more extreme circumstances.

 Finding supports that work well for individuals can also be challenging at times. Finding appropriate resources for an individual can also be cumbersome at times. I know this from experience. I have found it difficult to find a Medicaid waiver that is a good fit. What is currently called the Aged and Disabled Waiver was not an appropriate match for me. The Family Supports Waiver, though more of an appropriate fit, limits my resources. With the Community Integration and Habilitation Waiver being an emergency waiver at this time, I am finding it difficult to obtain. I cannot be the only individual experiencing this issue.

Another struggle individuals and families are having is being in the dark about resources. Only 25% of people with IDD in the US receive paid supports. That fact is alarming. I was fortunate to have been made aware of the waivers by medical providers, but many medical providers are not aware. I was also not made aware by my educators when I was approaching transition and I feel that transition is such an important tie to be made aware of these supports.

You may be wondering how we can make waves in home and community based services and supports. It’s all in coming together to use our collective voice. We need to research these issues, talk about these issues, and write about these issues. It’s important to stay tuned, spread the word, and write to our legislators. There are a lot of up and coming changes going on in the coming months and years within the Department of Disability Rehabilitative Services (DDRS) regarding Waiver Redesign so stay informed. . Also, keep your eyes and ears peeled during legislative session.

In conclusion, it is important to recognize the importance of home and community based services and supports and the way they assist people with disabilities, of all types, in working toward their vision of a good life. I gave you some examples of the successes I have had. It is also important to recognize the disparities that effect direct care workers and clients alike which can lead to staffing shortages and, at times, substandard care for individuals with disabilities. Finally, it is important to always be reminding ourselves and each other that we must not sit down and be quiet, but stand strong as advocates and leaders for change.     

 

ABOUT THE AUTHOR: Lexi Westerfield

 

Lexi Westerfield is a 31-year-old Blind and Autistic self advocate who is also a wheelchair user and is proud to use identity-first language to describe herself. Lexi lives in northwest Indiana in the town of Highland with her mom and two cats Maisy and Meiko. She is a contract employee with The Arc of Indiana and Self advocates of Indiana working on projects such as The Advocacy Leadership Network, Speakers Bureau, and being the Good Life Group Coordinator. She also currently serves on the Board of Directors for Self Advocates of Indiana. In her free time, Lexi enjoys watching 911, listening to a wide variety of music, and spending time in the community.

Image Descrition: Lexi is a white woman with short brown hair. She wears glasses with yellow tinted lenes. She is wearing a pink top, sitting in her power wheelchair, in front of a microphone and a bottle of water. Lexi is smiling broadly.

Image Descrition: Lexi is a white woman with short brown hair. She wears glasses with yellow tinted lenes. She is wearing a pink top, sitting in her power wheelchair, in front of a microphone and a bottle of water. Lexi is smiling broadly.

Guarding Our Path to Independence

By R. Diane Graves

 

I grew up in an era wherein the technologies most of us take for granted today were unheard of. In some respects, life was much simpler. There were no menu-driven touch screens. Appliances and electronics were operated by individual buttons and controls easily identified by touch. At the opposite end of that spectrum, however, were some insurmountable barriers to the independence I longed for. As a person who is blind, there was no way to proofread my typewritten work, read my personal printed mail, or shop for groceries without assistance.

            Fast forward 40 plus years, to a world in which technology and the ability to use it is a necessity. Most all of us use the internet and our smart phones on a daily basis without a second thought. We use these tools to communicate with one another, to pay our bills, track our banking information, do our shopping and fill out all manner of forms and applications; the list is endless. Though the overall convenience of 21st century technology is global, the freedom and independence these advancements have provided to the blind and others with disabilities is something I, in my youth, could have never imagined.

            We are now able to proofread our own work via screen reading software, and identify our own printed materials. There are phone applications which will identify colors and currency and provide orientation and navigational information for independent travel. Clearly we have come a long way.   We cannot afford to celebrate these advances, however,  without also recognizing the potential dangers posed by their rapid evolution. While 21st century technology has opened many doors, it also has the power to lock us out if we are not careful. For example, it is extremely difficult today to find an appliance, be it a printer, a dishwasher, or thermostat just to name a few, with individual controls not hidden behind a touch screen. Sometimes you can create a “quick fix” by pasting a marker or a braille label on the screen. However, more and more of these designs are going to multifunction, menu driven controls.

            It is not that the technology needed to make these devices accessible is not available. Companies such as Apple have proven that. Apple has built out of the box accessibility directly into its original devices. Sadly, most companies don’t stop to consider the needs of people with disabilities. They are just so far removed from our world that accessibility never crosses their minds and thus, is not a part of their proverbial game plan.

            Still other companies would like to assure accessibility, but they just don’t have a clear understanding of what it means to be fully accessible. There are no published rules or guidelines as to how to implement such a design. It is this lack of direction which has prompted the National Federation of the Blind to promote the passage of the Websites and Software Accessibilities Act.

This proposed piece of legislation will direct the Department of Justice to set in place some clear cut rules for website and software  design and provide technical assistance to companies as they implement these changes. How liberating it would be to access a website for the first time, and not have a question in the back of one’s mind as to how accessible it will or will not be! We need to get this piece of legislation passed, and we are well on our way to doing so .

            This is just one example of the need for and power of advocacy within the disability community. Another might be the advocacy for an accessible absentee ballot for those unable to make it to the polls. There are many others which could be cited. We need to ban together and make our voices heard; advocating for a world in which there is truly “justice for all.”

            So how do we do this? The most important and likely most obvious first step is to register and cast our votes. Voting for elected officials will give us the privilege to speak out against injustice. We then need to work together with all of our brothers and sisters in the disabled community to identify the barriers to our independence and join together to eliminate them.

            It is so easy to become complacent; to feel that our voices won’t make a difference. We must remember however that there is power in numbers. A single voice  might not be enough to bring about a fully accessible world, but if we join together in one mighty harmonious chorus, we will make a difference. It is time for us to stand up and be counted, continuing our quest for equity, and advocating as only we can.

For more information on the above referenced legislative effort see https://nfb.org/programs-services/advocacy/washington-seminar/websites-and-software-applications-accessibility-act .)

           

 

ABOUT THE AUTHOR: Diane Graves.   

 

Diane Graves entered the disability community at two years of age, after losing her vision to Retinoblastoma—a genetic cancer of the retina. Thus, it was at an early age that she became familiar with the obstacles posed solely by discrimination, and when civil rights became her passion.  

​When she was hired by the Indiana Civil Rights Commission in the spring of 1990, she felt privileged to have been chosen to represent the disability community, and other minorities, in their quest to ensure equality.​

Since coming to the Commission as its front desk receptionist, she has advanced, and is now working as a mediator for the agency. She has also obtained a bachelor’s degree in Organizational Communication from Kaplan University and is currently working towards her Master’s Degree in Social Work. She has serves in various offices and leadership roles in the National Federation of the Blind of Indiana, and has served on the Governor’s Planning Council for People with Disabilities.

 

             

 

 

Online Community is Community

By Melody Miller

Image Description;  Digital art of a sideview of an anime-inspired female.  She has dark waving hair and wearing black clothes.  She is sitting cross-legged on the floor,  typing on a laptop computer.  Her expression is of joy and peace.  The background is pink with swirls and hearts.  The words "You are not alone" are written on the background.

Image Description; Digital art of a sideview of an anime-inspired female. She has dark waving hair and wearing black clothes. She is sitting cross-legged on the floor, typing on a laptop computer. Her expression is of joy and peace. The background is pink with swirls and hearts. The words “You are not alone” are written on the background.

Quote from the artist, “In my art, I tend to focus on one subject to emphasize the individual experience and how complex every single person is. For this artwork, I wanted to show the importance of an online community and how even if you feel alone physically, there are always other people out there, whether online or in-person.”

ABOUT THE ARTIST: Melody Miller

Melody Miller (she/they) is an autistic queer person who has been familiar with disabilities all their life through friends, family, and their own personal experiences. Their favorite way to express the vibrancy of their inner world is through their art, where they tend to focus on one subject to emphasize the individual experience and how complex every single person is.

Strength of the Body, Knowledge of the Mind, and Honesty of the Heart: Adaptive Karate for People with Disabilities

By Jeremy Warriner

When I was in fifth grade my parents enrolled me in a Karate school so that I could learn how to defend myself. I was a small kid with a quick temper who kept getting into fights he couldn’t finish. For seven years of my youth, I spent most afternoons reciting a creed to rely on strength of the body, knowledge of the mind, and honesty of the heart to “win the battle within myself” and defend others, then developed physical and mental skills that built on those concepts. I achieved the rank of first-degree black-belt before I turned sixteen.

While I did learn to defend myself, what I really learned was how not to get into fights.  My life transitioned from youth into adulthood as I moved away from home for education and career.  A decade later, my karate belts were nice memorabilia of my youth to decorate my walls.  It was always something I thought I would get back to when I found the time. 

During my commute home from work, almost eighteen years ago, I was trapped in a burning Wrangler after a car accident.  Six weeks later I awoke to learn that both of my legs had been amputated above each knee.

I remember laying in the burn unit, thinking about my youth and the effort I had put in to learning Shorei-Goju Ryu.  Something valuable that I had let slip away as my career took prominence in my life but had always intended to practice again.  This was now gone…taken with my legs, and the effort to learn Karate in my youth now felt wasted.

As I learned to walk on prostheses, my Physical Therapist was impressed by my balance and body awareness.  She attributed this to my martial arts background.  It was a bittersweet benefit left over from my training in my youth, but it relieved a little of the loss. 

Adapting to life as a Person with Disabilities is hard…it’s the hardest thing that I have ever had to do.  Beyond the physical actions of fighting, a lot of what I learned from Karate was about self-discipline, motivation, determination, and resiliency which helped me adjust to living life using a wheelchair and prosthetics with crutches.  I was using what I had learned to reach a black-belt rank in Shorei-Goju Ryu, every day now, to deal with the emotional and physical trauma of life with a disability. 

These skills, learned in my youth, helped me to access the supports needed to define and achieve an independent lifestyle as a Person with a Disability.  The time spent working with a Sensei (Teacher) and other students had taught me to be open to peer support.  The self-discipline, determination, and confidence developed to earn my black-belt now supported the ability to advocate for myself and others; in efforts to speak up for my own rights, and to raise Disability Inclusion and Equity through increased Accessibility at a social level, which leads to a Diverse sense of Belonging.  Resiliency fed a belief that I could live an independent lifestyle and led me to define what that meant and how that would look, and to ask for the help needed to make modifications and access the resources (from disability support organizations to crowdfunding) for the assistive technology, training, and adaptations to support my vision of independence.         

 

Many aspects of the Martial Arts have benefits for People with Disabilities.  Reframing your disabilities as part of your healthy state, not something working against it, Karate provides accessible and adaptable exercise that helps develop confidence, endurance, and self-awareness.  Most importantly, by practicing and adapting Shorei-Goju Ryu, I have redefined my perceptions of a healthy body, mind, and spirit in a way that is inclusive of my disabilities, and I have an adaptive avenue to further develop those aspects of life. 

Karate can be adapted for any person with any disability, customized to meet their goals, and modified as the individual’s skills progress.  Learning Martial Arts can help you face life with adaptability and resiliency, both of which are vital aspects of the disability experience. During the COVID lockdowns, I virtually assisted a young woman with Down Syndrome doing her senior project on Martial Arts.  I demonstrated strikes (punches & blocks) from a wheelchair in Indiana, and she demonstrated kicks, stances, and movement from a classroom in Georgia.  I couldn’t remember any of the Katas (choreographed forms for practice and meditation), but I could help her put the basics together.  When we finished, I found myself asking the question “how do I really modify this for my 47-year-old bi-lateral above knee amputee body?”

Demonstrations can be seen on the Adaptive Karate page at https://www.walkingspirit.org.

 

                      

(Image Descriptions: The image on the left shows Jeremy Warriner a white man in his mid-forties with reddish-brown hair and a trimmed mustache and goatee, in a grassy yard under the shade of trees on a sunny day with a cloudy blue sky. He is centered in the picture standing on his left prosthetic leg, with two forearm crutches planted on the ground in front of him at opposite angles, he is leaning forward and to his left side as he kicks to the right side with his right prosthetic leg. He is wearing a white gi top (karate tunic), a long fabric black belt knotted at the waist, and black shorts. His prosthetic knees and legs are a shiny silver aluminum color with ball shaped “ankles” above hiking boots on his prosthetic feet. There is a rope hammock to his left and tall trees in front of a blue house with white windows & doors in the background.

The image on the right shows Jeremy Warriner sitting in his purple rigid frame wheelchair without his prosthetic legs, on a wooden deck outside of a blue house with green trim, white windows & French doors on his right. Jeremy is wearing a black gi (karate uniform) with a long fabric black belt knotted at his waist. The two ends of the belt dangle between his thighs and there is a red stripe near the right tip of the belt indicating the first black-belt rank. He is facing forward and centered in the bottom half of the picture, with his left hand resting on the armrest above the left wheel, knuckles against his left flank, elbow bent out to his left side. His right arm is relaxed with his right hand resting on the distal end of his residual right leg. The empty lower legs of his black pants are folded underneath him, exposing the empty footrest, Velcro straps, a pocket, a small circular container, and a cupholder attached to his seat and frame. There is a tablet with a red keyboard and a legal note pad with pen on a small glass table to his left, with a power strip on the deck in front of the table. Behind him, a ramp with a railing extends down to a stone path with grass and trees in the background. Jeremy is smiling at the camera, his long reddish-brown hair falls loose behind his shoulders, and his mustache and goatee are trimmed short. Sunlight filters through the leaves of a tree above him, casting a light shade on the deck).

 

ABOUT THE AUTHOR: Jeremy Warriner

Whether walking on next-generation prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, founder of Walking Spirit & Spirit Therapies, LLC, charter member of the international Rotary Club for World Disability Advocates, and a devoted husband & stepfather. His passion is enhancing our communities through providing assessments, consulting, training and support on Accessible Diversity, Equity, Inclusion, and Belonging from a Disability Lens. Jeremy’s current projects include adapting Karate to his disability, co-hosting the international podcast “World Disability Matters”, facilitating the virtual Disabilities & Conditions of Aging Network in central Indiana, and writing a book about his experiences adapting to life as a bilateral above knee amputee and burn survivor. He can be reached through his website at https://www.walkingspirit.org or by email at jeremy@walkingspirit.org.