The Importance of Building Community

By Jessica Minor

I was born with osteogenesis imperfecta (OI), a rare genetic condition that causes my bones to break easily. My parents didn’t know until I was around 9 months old when I broke my collar bone trying to roll over. Starting from a very young age, I was delayed in my gross motor skills, and my parents were originally told I wouldn’t be able to walk. However, I did learn to walk at 3 years old. Growing up and in school, I mostly used a walker and wheelchair to get around but remained as independent as I could. 

As I got older, my parents instilled the importance of advocacy and building a community. Throughout all my grade school years I had several close friends that I could always count on. My parents mirrored the importance of building a community with so many friends that were practically family. The people I could also count on when I needed them.

When I went to college, my disability became a little bit more front and center. I went to school in Cincinnati, possibly the hilliest place in the Midwest I could have chosen. I only knew a couple of people and so it took me some time to find my people – who were willing to help me on occasion (especially up those hills) and reteach individuals about who I am, beyond the disability. I did though find my community and had people I knew I could count on if something happened.

What nobody tells you is how challenging it is to meet people once you are out of school – disability or no disability.

After undergrad, I decided to move to the Washington, DC area for a job. I packed up my things and moved, knowing nobody. I didn’t realize how scary that would be until after my parents left and it was just me and my new dog that I “accidentally” found at the Humane Society the week prior. Since I knew nobody, I figured the best way to meet people was through dating. I went on a lot of dates and eventually met my now husband, who also happens to have a disability. One of the stark differences we found is the difference in our idea of community. It was not something his family necessarily prioritized, while mine did. But, over the years we have learned to develop our own ideas of what community looks like for each of us and for our family. There is no one way to build a community. We took pieces of what we knew, combining it together to make our version of community beautiful and unique.

Fast forward to a baby, COVID-19, and a move to Indiana later and I cannot believe the community we have built. If you had asked me six months ago if we had found our people in Indiana yet, I maybe would have shrugged it off or said not really, however I have been proven very wrong, for the better. Community might not be there every day, but when it shows up it’s often very surprising.

In January, I had a fall that resulted in my first broken leg since I was in eighth grade. As a type-A planner personality, I panicked as to what we were going to do. Not only for me, but for my husband, who is still learning to drive, and our daughter. Life does not stop when you have an injury as an adult. However, in a state of panic I asked my sister to reach out to everyone I could think of for help. By the time I was out of surgery, our entire “help” spreadsheet was filled, and I had several text messages with people asking how else they could be there. From old and new friends, neighbors, and people I barely knew from our daughter’s daycare, we had everything covered and then some. I could not believe the amount of support people were willing to provide if I just asked.

It is hard to ask for help, especially as a person with a disability, it often feels like a burden. But that is what community is; helping each other. I know one day, someone that has helped me is going to need support and I can guarantee I’ll be right there when they need me. We all have our seasons and life ebbs and flows, but one thing can always remain constant and that is community.

:ABOUT THE AUTHOR:  Jessica Minor

Jessica Minor was born with osteogenesis imperfecta. She was born and raised in Indiana, but previously resided in Maryland for over eight years until 2021. She lives with her husband, 3-year-old daughter, and 2 dogs.  Since moving back to Indiana, she has worked as Director of Community Engagement at accessABILITY, Center for Independent Living. In her role, she oversees all outreach initiatives, fundraising efforts, and disability justice trainings where she works with organizations and companies on how to be more inclusive to the disability community. Jessica is also on the Board of Directors at Meals on Wheels of Central Indiana and is a member of the Interagency Coordinating Council for the First Steps program.  

While in Maryland, she received her Master’s Degree in Public Policy and worked in disability and public health policy. She was also on the Board of Directors of Independence NOW, a Center for Independent Living, and Hearts and Homes for Youth. 

Jessica loves connecting with the Greater Indianapolis community, building connections, and helping bridge the gap for people living with disabilities. 


                         		 
Image Description: Jessica is a white female with wavy brown hair to her shoulders and is smiling. She is wearing a dark blue shirt with black jacket. 
Image Description: Jessica is a white female with wavy brown hair to her shoulders and is smiling. She is wearing a dark blue shirt with black jacket. 

                         		 

Untitled by Hope

By Olivia Hope

 

I move but I am slow. The pep I once had in my step is now a shuffle. I hesitate to continue this

endless path of hopelessness. Where am I going? How did I get here? Why? I ask myself these

questions but they are left unanswered. I cannot stop to consider what these answers could be or

what they mean for me. All I can do is move forward.

Some days, I find my feet feel lighter. I can pick up the pace and wear a smile on my face. Other

days, I am on the ground crawling inch by inch. I long for what once was. When I ran with

freedom and skipped with joy, uninhibited by the weight of my sorrow and trauma. When did

this load become so heavy? Who is to blame? Why? I ask myself these questions but still they

are left to their own. All I can do is move forward.

As the mile markers go by, I pick up more weight and drop some off. The burdens fluctuate but

the pace remains the same. Even when my shoulders and hands are free, my body remains heavy.

My mind is chaotic white noise and I feel I am over capacity, incapable of finding myself. Who

am I outside of my obligations, family, and school? Where do I end and they begin? Why do I

feel I am never enough? This question stops me in my tracks.

I sound like the voices in my life who kept me small, sorrowful, and stiff. I do not like that. I

look at the road behind me, all the miles I have walked, crawled, ran. I remember each step and

how at each obstacle, each weight added, and each burden removed, I kept moving. I turn around

and stare at the road ahead of me, breathing in this moment of stillness. I want to shame myself

for standing still, but the sounds of the birds and the warmth of the breeze distracts me from

those thoughts. I should take breaks like this more often.

I take one final breath and I continue my pace once again. This time, I am walking taller and I

see a light in the distance that I did not see before. My body is still heavy and my mind is still

static, but the light provides me with strength. I see how much I have overcome and how much I

will accomplish in my future. I move forward feeling hopeful and more than enough

ABOUT THE AUTHOR: Olivia “Liv” Hope

Olivia “Liv” Hope is a senior at Purdue University Fort Wayne majoring in Psychology, minoring in Philosophy and Religious Studies with a certificate in LGBT+ Studies. Olivia has received student awards for his involvement on campus and through his community advocacy in Fort Wayne, has been invited to sit on local advisory groups and be a guest speaker on panels. He is a single parent to a 3-year old child at home and enjoys being out in nature. Because of his lived experiences in the mental healthcare system and passions for advocacy, his career plans are to obtain his PhD in neuropsychology to advance alternative nonmedical treatments for psychiatric patients.

Image description: A selfie taken by Liv in his bedroom. He has black hair with a green streak and a black nose piercing. He is smiling while wearing a black shirt with a green crystal necklace.

Image description: A selfie taken by Liv in his bedroom. He has black hair with a green streak and a black nose piercing. He is smiling while wearing a black shirt with a green crystal necklace. 

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.