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.

Embracing Life’s Challenges: The Journey of an Autistic Person with Epilepsy, Autism, and ADHD

Written and Art by Ash Ward

Image Description: A disabled trans male being told He's enough and the person saying that is making him feel important. Surrounded by the disabilities he has, the pain of having them are fading farther away once he hears those words of encouragement.


 Image Description: A disabled trans male being told He’s enough and the person saying that is making him feel important. Surrounded by the disabilities he has, the pain of having them are fading farther away once he hears those words of encouragement.

 Living with disabilities is a unique journey that shapes one’s perspective and invites a myriad of experiences. Today, I tell you my life story of navigating through the complexities of autism, epilepsy, and ADHD. It was a long process, and I surely struggled, but it became harder and the road to where I am today was, indeed, bumpy.

 • Discovering Differences

From an early age, I began to notice my innate differences from my peers. My initial encounters with autism manifested in distinct communication and interaction patterns. Socializing became an intricate dance that required both patience and understanding from those around me. Despite these challenges, I found solace in my burgeoning creativity and unique perspectives on the world.

 • Epilepsy’s Unpredicted Twists

As life unfolded, epilepsy unexpectedly entered the stage, adding another layer to my journey. Seizures brought forth uncertainty and fear, each episode altering their path momentarily. However, with resilience and support, I discovered ways to manage my condition, embracing life’s unpredictability with open arms. Medication played a huge part, but overcoming my fear helped.

 • The Dual Nature of ADHD

ADHD joined the ensemble, introducing a whirlwind of hyperactivity, impulsiveness, and difficulty concentrating. It challenged my ability to stay on task, especially in school, and sometimes made me feel restless in an environment designed for neurotypical individuals. Nevertheless, their ADHD became a catalyst for innovation, enabling me to approach my problems from unique angles and harness my boundless energy for creative pursuits.

 •The Obstacles

Life was far from smooth sailing, as societal stigmas and misconceptions surrounding disabilities often stood in the way of my progress. I faced educational barriers and workplace discrimination various points in their life. However, with determination, advocacy, and the invaluable support of friends, family, and mentors (staff in my previous and current homing situations), I overcame these obstacles.

 • Finding a Voice

In my quest for self-acceptance and resilience, I discovered an artistic outlet that allowed me to share their experiences. With writing, Drawing, or any creative medium, I was able to express my unique perspective on the world, enlightening society on the true nature of disabilities and eroding the boundaries between neurodiversity and the mainstream.

 • Embracing Neurodiversity

The journey towards self-acceptance led me to embrace the concept of neurodiversity. I became passionate advocates, fostering inclusivity and understanding within their communities. My experiences with epilepsy, autism, and ADHD gave me invaluable insights into the diverse tapestry of human existence and the beauty that lies within the differences we all possess.

 ABOUT THE AUTHOR: Ash Ward

I am Ash Ward. My pronouns are He/they and I am 23 years old. I enjoy drawing and listening to music. I like helping others and volunteering at animal shelters!

 

Image Description: Trans man with pink fluffy hair, hazel eyes and an anime shirt on Trans man with pink fluffy hair, hazel eyes and an anime shirt on


Image Description: Trans man with pink fluffy hair, hazel eyes and an anime shirt on Trans man with pink fluffy hair, hazel eyes and an anime shirt on

Ableism in Public Health Discourse: What is the Effect?

By: Gwen Strickland, MPH

I went to a conference recently and witnessed a very ableist presentation about lead poisoning in children. The researchers were well-meaning. They looked at how lead poisoning altered the development of the human brain and body. The researchers found that children exposed to higher concentrations of lead had higher rates of ADHD and developmental delays as they got older.  Over the course of the rest of this presentation, the public health professional was less well-meaning. The main presenter, who had a master’s degree in public health, took a very specific angle in how she approached the prevention of lead poisoning in children. She consistently used scare tactics throughout that were reminiscent of Autism Speaks advertisements. She highlighted the behavior issues in children who had been exposed to lead and talked about how greatly this disrupted families. She started her presentation/slides with a story about a boy in South Bend who “suddenly, one day” stopped developing and it took another year after that to determine he had lead poisoning. His developmental delays, she said, lead to their family falling apart and losing their house. That this “was the reality” for children and families affected by lead. She seemed confident that lead was “causing” ADHD and autism in her healthy community. If you replaced any of the times she said “lead” with “vaccines,” she would have been called an anti-vaxxer. This speech was not, in the end, about lead. It was about finding something else to target to eradicate “problem children.” It was “I did not sign up for a child with disabilities” and lead was the scapegoat.

Later it was confirmed the effect that this had had. Someone asked what to do if they had a child with ADHD or autism and if it was lead that caused it. The researchers said “there is no way to determine that” but the other lady was clear that lead could be behind it and to test their child immediately. She was not a scientist and not able to give that sort of correlation/causation statement. Everyone in the audience left with the message that lead could cause ADHD and autism and that we could erase “problem behaviors” from those by addressing lead poisoning. I heard so many people in the hallway talking about how they just had to share with everyone they knew about this threat. I felt so stigmatized and like this was just going to increase the erasure and masking of people like me.

I only recently discovered I am autistic and in the past few years have been diagnosed with/put on medication for ADHD. I have been so high masking (hiding and over-compensating for my autistic/ADHD behaviors) my entire life and have had the privilege of being able to maintain that up until this point, but that comes at a cost. I have only just been able to start unpacking how much damage and trauma have occurred as a result of masking for this long and not recognizing what my needs are. Not even knowing that I had different needs, because as far as I knew I was allistic (not having an autistic neurotype) and the reasons that I wasn’t completely fitting into that box were a myriad of character flaws. What caused this? People like this speaker, who punish or medicalize needs like these as “problem behaviors” instead of having compassion and realizing that not all “abnormal” behavior is inherently a problem requiring a fix.

I think researchers and health advocates get the wrong idea. They think we need to be “saved” from our disability, that preventing other people from experiencing disability is the highest priority. The reality is that I don’t need to be “saved” from my autism or ADHD. I need society and our structures to accept me the way I am and meet me where I am rather than creating arbitrary rules that keep me from being able to participate fully. The reason, in large part, that my autistic/ADHD experience is that of disability is that society is not built for the way my brain works. It is also inherently traumatic to live in a world that is not built for you. And it wouldn’t be much of a stretch to make those adjustments and be cognizant that other people may have different neurotypes than you. Everyone loses when we squash the neurodiversity our species is capable of.

Though I struggle a lot with my mental disabilities even outside the constraints of a society not built for me, when I am able to be as fully my authentic self as I can, I am capable of amazing things that my allistic and neurotypical peers are not. Contrary to the pervasive narrative that autistic individuals have no empathy, most autistic people I have come across have an over-abundance of empathy and an innate sense of justice. We are often creative, have great attention to detail, and think about problems outside of the box. Autistic brains tend to do what is called “bottom-up processing.” This means that when we approach a problem or question, we collect as many details and smaller pieces of information about the problem as we can to then form broader conclusions about the problem. Allistics tend to do what is called “top-down processing,” which is the opposite. They approach a problem by finding generalities about the problem, typically based in what they already know, and then move into the details. It is valuable to have both approaches, as they can come out with differing perspectives to be considered for the problem or question.

I will end this narrative by emphasizing that if you’ve met one autistic person, you’ve met one autistic experience. We exist on a spectrum (which looks more like a radar chart, not a line from “more autistic” to “less autistic”) for a reason. We all have our own unique support needs, strengths, and struggles. But we are valuable to the human species just like everyone else and should not be erased or suppressed. If there were a magic button right in front of me that could “cure” my autism or ADHD, I would walk away. (Not everyone with my disabilities may feel this way. I have lower support needs than some and can be relatively high masking when needed, which gives me privilege.) I know my worth and I’m going to keep fighting for it, regardless of what people like this public health professional have to say about it.

Bio

Gwen haas white skin and long brown hair. They are wearing glasses aaand a dark top.

Gwen (she/they) is the Violence Prevention Program Evaluator for the Indiana Department of Health. They did their undergraduate degree in public health and bioinformatics at Miami University in Ohio and Master of Public Health in epidemiology at Indiana University Purdue University Indianapolis (IUPUI). They are AuDHD (autistic and ADHD) and proudly part of the LGBTQ+ community. Outside of public health work, Gwen likes to engage with her special interests and spend time with her spouse and dog. Together with their spouse, they go to comic conventions and play Dungeons and Dragons. They also occasionally volunteer for a dog rescue.