The Importance of Having People with Disabilities at the Decision-Making Table

By Dee Ann Hart

 

 

What is the importance of having people with disabilities at the decision-making table? 

 

Disability inclusion allows for people with disabilities to take advantage of the benefits of the same activities experienced by people who do not have a disability. Inclusion should lead to increased participation in socially expected life roles and activities – such as being a student, worker, friend, community member, patient, spouse, partner, or parent. The importance of disability representation in leadership fosters a more inclusive and belonging culture. 

 

Disability inclusion means understanding the relationship between the way people function and how they participate in society, and making sure everybody has the same opportunities to participate in every aspect of life to the best of their abilities and desires. 

 

Decision making is an essentially social process adopted by individuals or groups to identify and choose the best choice among several alternatives. Decision-making choices are influenced by the preferences, values, and beliefs of the individuals or groups involved in the decision-making process. 

 

Social inclusion is the state of having the resources and opportunities to participate in social, economic, and cultural life, and to enjoy the standard life considered normal in the society in which we live. 

 

Making decisions is vital to a person’s sovereignty and their spirit of personhood. It is a key component for enabling individuals to exercise their authority, have control over their lives, and interact with others in society.

 

The rights-based model focuses on the equal participation of people with disabilities in all aspects of their lives, becoming productive members of society. 

 

The service delivery approach was changed to a rights-based approach in the late 1990’s to enable people with disabilities to exercise their civil, political, social, economic, and cultural rights on an equal basis with others. The rights-based approach aims to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by people with disabilities within the national legal framework. This framework tries to overcome exclusion and inequity at institutional, attitudinal, physical, legal, and communication levels. 

 

Participation in decision making is an essential factor in measuring the social inclusion of individuals and groups, especially concerning people with disabilities. Each person with a disability can make decisions for themselves’ or participate in family- and community-level decisions. Participating in decision making at these three levels creates a sense of ownership among people with disabilities concerning familial, communal and societal activities. The personal decisions enables people with disabilities to improve fundamental aspects of their lives such as with respect to food, clothes and other basic needs. At the second level, the decisions help people with disabilities make choices regarding their health and education. Therefore, it is mandatory to involve people with disabilities in all decision-making processes that impact them. 

 

Participation in decision making is a fundamental human right for all, including people with disabilities. Active participation in decision making at the personal, familial, and communal levels gives hope to people with disabilities that they can be productive members of society, and can consider themselves as a valued part of society, compelling their social inclusion in mainstream society. 

 

In addition, it is important to ensure participation of people with disabilities in decision-making processes in family, community, school and other relevant institutions in order to ensure that the needs of people with disabilities are properly integrated at all these levels, and that their needs are satisfactorily provided for at each institutional level.

 

“Nothing about us without us” is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group affected by that policy. The motto ”nothing about us without us” relies on this principle of participation, and it has been used by organizations of people with disabilities throughout the years as part of the global movement to achieve the full participation and equalization of opportunities for, by and with persons with disabilities. The concept of “nothing about us without us” signifies the belief that disability rights should not be created without including the voices of persons with disabilities and their representative organizations. The observance of the International Day of Disabled Persons will focus on the active involvement of persons with disabilities in the planning of strategies and policies that affect their lives. This is the importance of having people with disabilities at the decision-making table! 

 

ABOUT THE AUTHOR:  Dee Ann Hart

 

 

Dee Ann is 59 years old. Born with severe low vision/visual impairment, 20/200 or worse. Thanks to developments in low vision rehabilitation Dee Ann has enhanced her visual function and improved her quality of life. Dee Ann has experienced the personal impact of irreversible severe vision impairment, delayed motor, language, emotional, social and cognitive development, with lifelong consequences. Dee Ann’s severe vision impairment has also impacted educational achievement, employment and mental health. 

 

Dee Ann has found advocacy and leadership to be among her true inner callings – an internal feeling that drives the passion for her purpose in life. 

Dee Ann Hart, a white/caucasian female, short (collar length) brown hair, blue eyes, outdoors on a sunny day in late Fall 2022. The sun highlights her hair and reflects off her skin. 

Dee Ann Hart, a white/caucasian female, short (collar length) brown hair, blue eyes, outdoors on a sunny day in late Fall 2022. The sun highlights her hair and reflects off her skin. 

 

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.