Kindred Stories 2022:

My name is Ian. I am a 34-year-old self-advocate. I’ve lived in Tennessee for most of my life. In high school, I played basketball and went to prom. I had a lot of friends, and I dated a bit. At that time, I wanted to go to college and continue playing ball. I didn’t have a clear plan, but I thought that after college I might become a police officer. I also wanted to live on my own.After graduating, I spent a few months going to TRC (Tennessee Rehabilitation Center). It’s a place where they help people learn how to get a job or live on their own. It wasn’t the best fit for me though, so I didn’t stay there very long. I stayed at home for a while after that, then I had an opportunity at Vanderbilt. They were helping people with disabilities find jobs. That’s where I got my first job. I’ve had a few different jobs since then. I’ve also lived in a few different places, sometimes with roommates. All those experi-ences brought me to where I am today.

I currently live in a Friendship House through Our Place Nashville. I’ve been here for about five years now. About four or five of the residents are graduate students at the Divinity School, and four or five of us have disabilities. We have our own apartment units, but the facility has a community center space, too. I like living in my own apartment. It’s nice and quiet. I also really enjoy that all the residents have dinner together on Monday nights. It’s a great time to catch up and see how every-one’s week is going. It’s nice to know that there are people around me that I can talk to, especially if I ever have any questions or get into a bind. We also get together once a month to talk about the rules and how things are going.I’ve had some assistance to be involved in the community, such as volunteer experi-ences and going to the grocery store twice a week. I have a Best Buddy that I hang out with about once a month, too. I also like working out at the YMCA, visiting family, and going to work. I’ve worked at Krispy Kreme for six years now. I work there three days a week. It gets really busy on the weekends. I work early mornings, and I drive myself. My favorite thing about my job is the doughnuts, of course.The biggest barrier about housing is the cost of rent. I can’t pay for my expenses with the money I make at Krispy Kreme. My mom pays for a lot, and she gives me gift cards to go places. I couldn’t live where I live without her. Rent makes it really difficult for people with disabilities to be where they really need to be. Some of my friends still live at home with their parents.I think people should help raise money for housing. Benefit nights are a way to raise money. We do things like that with Our Place Nashville.It would have been helpful to learn more specific knowledge [about living on my own] in high school. There are three main things that would have been helpful to learn about: how much rent would cost, what types of jobs would be a good fit, and how to save money. I think if we would have learned those things, things would have gone pretty well – for me and for other people like me.

As told by Gabi (mother) 

My name is Gabi. I have lived in Tennessee since 1999, and I currently alternate between living in Knoxville and Nashville. I live with my son, Albert, who is 19 years old. Albert was born with a brain malformation that caused epilepsy. He took many medications to stop the seizures, so to help him take fewer medications, a surgeon removed part of his brain. The surgery caused hydrocephalus, leading to the need for a shunt. The shunt stopped the seizures, but issues with the shunt arose. A surgery to fix the shunt led to horror, as a medical error during the surgery caused Albert to become unable to walk. Now, Albert uses a wheel-chair, has functional use of only his right arm, and has a very weak body. Because of that, he depends on me for all of his daily living activities. Albert goes to therapy every day for various needs, but he is still dependent on me to help him with his daily activities.Our current housing situation is complex. We split our time between Knoxville and Nashville. Albert’s medical complexities require many visits to his doctors in Nashville, but Albert’s father and sister live in Knoxville. Currently, we live in a condo when we are in Knoxville, and we rent a hotel in Nashville. This situation is not our ideal situation. Our goal is to live in Nashville, because that is where all of the best doctors are to support Albert. Currently, commuting between Knoxville and Nashville is almost impossible to do. Yet, there are significant barriers that prevent us from living in Nashville. Majority of the housing in Nashville is either not affordable or not accessible. The social security income that Albert receives would not cover rent in Nashville. The affordable and/or free housing available in Nashville have incredibly long wait lists. We have applied to countless places only to be told that nothing is available. To make housing more challenging, not only is the housing expensive, but it is typically not accessible for Albert. We need a place with medical equipment to support his needs. Ideally, we would love to get out of an apartment and into a house. This would provide space for medical equipment and reduce the amount of travel we must do to get therapy, but this option is not affordable.I would love for Albert to live in community housing, but it is challenging for me to allow anyone to care for Albert after what happened to him with his medical error. Albert living without me right now is not an option. I cannot leave him with strangers after what happened to him. Maybe when the time comes sometime in the future, but not right now. Also, it seems that all community housing requires a level of independence from people that Albert currently does not have. I wish there were a community housing option that were accessible and affordable that would allow both me and Albert to live with people in similar situations. Yet, until that is an option, Albert and I must continue to live in situations that are not ideal. We need more of the community. He will make friends in the community. The question is, how much does the community want Albert? How open is the community to Albert?We understand the importance of advocacy and policy. We have attended Disability Day on the Hill since 2016. We need legislators to know that this is an issue. It is an issue everywhere, but some places have it harder than others. We need to focus on supporting the development of housing that is safe, affordable, and accessible—little by little, we need to all be working on that together. Top: Albert sits outside the garage where all of his belongings are stored until he finds a place to live. Right: Albert and his mother, Gabriela, stand outside of the hotel where they stay in Nashville.

My name is Carolyn, and I am the co-founder and executive director of Our Place Nashville, a non-profit organization dedicated to optimizing outcomes for individuals with intellectual and develop-mental disabilities (IDD). These individuals, more commonly known to us as “our friends,” are afforded the opportunity to immerse themselves in community living where independence and a sense of family are formed. A close friend of mine has a son with profound disabilities, and as I watched her navigate the journey of parenting, I began to feel badly that she had to carry such an immense weight while I was spared that hardship. This was a turning point in my life, and I began to realize that I had a moral obligation to fill the existing needs in the world of disability. As I pondered my role in contributing to this community, I focused my attention on housing. It was extremely disheartening to understand the incredible. lack of affordable living options that exist for our friends with IDD, so together with Jaco Hamman, I stepped away from my previous occupation and began working on what would become Our Place Nashville. The definition of community living is dependent on the individuals who live in that community. Yet the goal always remains to bring people together to form a cohesive unit and enjoy each other in the way that family does. Community living evens the playing field for our friends. It provides them with access to amazing jobs and enables them to participate in and contribute to society at large. Most importantly, community living provides our friends with the opportunity to be ambassadors for individuals with disabilities. Many of the challenges that individuals with IDD face, such as difficulty securing transportation and feelings of isolation, are solved by living in a community of friends. Everyone pitches in to help one another. The greatest challenge that I see working at Our Place Nashville lies in the lack of funding for housing and services specific to individuals with IDD. Without financing to build more affordable housing options and staff to provide services in these homes, it is impossible to meet the needs of this vulnerable population. Our community living center is dependent on the generosity of donors and fundraising events. The COVID-19 pandemic has forced us to put many of these fundraisers on hold. Our friends rely on housing in urban areas with public transportation to thrive, and as Nashville grows and develops, it becomes increasingly more difficult to find community living options. It is critical that our friends have the ability go out into the Nashville community and educate people on their specific needs and challenges. Without community living as an option, our society will potentially miss out on a whole generation of capable and inspiring advocates for individuals with IDD. I encourage our government and community leaders to be honest, recognize the needs of our community of friends, and then do anything possible to make sure those needs are met. At the end of the day, we all should ask ourselves, “What would we do if we were in their shoes? How would we want to be treated?” Then the reality of the situation becomes much more relatable, and that is where transformative change begins.

As told by Julie (mother)

My name is Julie, and I am a single mother of two children. My son, Bryan, is 24 years old and has autism. Bryan and I live together in an apartment in Mt. Juliet. We moved about four years ago from Illinois. Because Bryan will never be able to drive a car, I chose an apartment in an area where he could walk to the places he likes to go. I want him to be as independent as possible. Bryan likes to play video games, is a very social person, and has a heart of gold. In our current living situation, he’s lacking community engagement and opportunities to become a self-advocate. His goal is to someday have his own place to live in an assisted living community, but we have encountered challenges along the way.When Bryan turned 22 years old and aged out of the school system, things suddenly shifted. He had been receiving services that helped him in many ways as well as provided ways to support me so that I could help him, too. Now there is no clear path. Our school district did a wonderful job of being proactive and pointing us to a state-operated training center for Bryan to attend after he graduated. They felt this would be the best next step for him, and we had a plan designed for him once the program was over. He would spend 18 months there, where he could take classes, live on campus, and gain valuable life skills. Once completed, he would be placed in an assisted living situation. All of this was put into place by the school district. However, every-thing fell apart after the start of the global pandemic. Because of COVID-19 and a lack of funding and staff, Bryan has been unable to start this next chapter.We have been given little information as to when he will be able to move onto campus and start this program. Communication from the facility to students and their conservators has been practically non-existent. The most painful part was in September of this year, when everyone we knew across the country was back in school, from kindergarten to college, except Bryan. My son has been denied that opportunity. He is fully vacci-nated and willing to wear a mask and cannot understand why everyone but him is allowed to attend school classes in person. Without the life skills experiences from this program, he cannot move forward to look for employment and eventually live success-fully in his own apartment. Not being on campus means Bryan isn’t getting the social interaction and community engagement he really needs to thrive. We were directed to contact another state-run service to look for housing and filled out a lengthy questionnaire. We were told that Bryan was on the waiting list, but that it would be at least two years until he was able to receive any services. It was communicated that the funding was gone and, because he wasn’t in a crisis situation in his current living situation, he did not qualify for assisted living. There has been no acknowledgement of what has been taken away and why.Conservators and families are left out of the conversations and kept in the dark. The silence has been deafening.We are currently in a holding pattern but are working with Disability Rights Tennessee. It feels like we’re at a deficit now. Bryan is already 24 years old, and we may need to wait two more years for any services that can help him move closer to attaining his housing and life goals.

My name is Bryant, and I am 24 years old. I am from Franklin, and now I live in the dorm at Lipscomb University. I am a first-year student in Lipscomb’s IDEAL Program, and I live with one roommate, a second-year student in the IDEAL Program. Some of my hobbies are sports and photography. I love the Boston Celtics, and I really like getting to watch volleyball and basketball games at Lipscomb. I also love having a job! When I was in high school, I worked at a few different places: Columbia State, Williamson Medical Center, and Chick-Fil-A. Now, I have an on-campus internship with campus security during the week, and I work at Publix on the weekends.I moved into the dorm at the beginning of this semester, and this is the first time that I have lived somewhere outside of my family’s home. Growing up, I wanted to live at home with my parents when I was older. When I was accepted into the IDEAL Program, I started to think about living in the dorm. I like the freedom and responsibility of living in the dorm. It’s really important to me to be independent and living in the dorm is a way that I can be more independent. I like being able to cook my own food, clean, and wash my own clothes. I like being able to drive myself to work and back home to visit my family on the weekends.I also really love the things I get to do because I am living in the dorm at Lipscomb. I’ve learned how to keep track of my own schedule and make sure that I’m on time to my classes. I am getting the chance to gain more experience working through the IDEAL Program. This year, I am doing an on-campus internship with campus security. Next year, I will get to do an off-campus internship. I also love getting to hang out with my friends. My roommate and I get along really well. We watch Disney movies and talk about school. I have a great group of friends in the IDEAL Program. We go to class together, eat together, and go to Lipscomb sporting events together. We’ve even had events such as karaoke and campfires at the dorm hall!When I consider my future goals, they are all centered on being independent. I really love my job at Publix, but my dream job would be in sports photography. I would love to someday take photos for the Nashville Sounds or Titans football. Living on my own is also very important to me. I would love to live in an apartment or house and have my own bedroom and bathroom. I would even enjoy living with friends. I think it would be really fun to learn to cook food together and have movie nights. My dream home would have a garage for my truck, and I would also love to have a porch outside with a fireplace and television for watching football and basketball games! I have enjoyed my time in Lipscomb’s dorm so far, but I look forward to having my big bed again. It can also be challenging to live in a space with a lot of noise. It’s often loud in the dorm, and loud noises can DISABILITYbe overwhelming for me. Ultimately, it is important to me to continue in my journey towards independence, eventually living in my own place and being able to choose my living situation. I never want to be in a government placement or forced to live somewhere that I do not feel comfortable. One thing that would have benefitted my first experience living on my own would be opportunities to practice independent living beforehand. Before Lipscomb, my schooling helped me strengthen many skills I would need after graduating, but I would love to see schools do more to help students practice independent living, preparing students for this transition. For example, a “retreat-like” option for students before they graduate could be a promising way for students to receive guidance and growth in independence. While I have had a really positive experience in Lipscomb’s IDEAL Program, there have still been challenges. There are many aspects of community living that can be challenging, such as laundry, cleaning, and asking for help with things like repairs. I have also learned a lot about managing my time throughout the day now When I consider my future goals, they are all centered on being independent.that I am living on my own, and having more practice could have helped me with this. Schools could help students by supporting them through practice, while tracking and monitoring their progress. Then they could help evaluate strengths and weaknesses for students.Overall, my experience at Lipscomb has been especially positive. This has been a great place for me to begin my journey towards independence, and I am so grateful for the support I have received through Lipscomb’s IDEAL Program. Community engagement and availability of necessary support can often be issues for individuals looking to transition into community living, but this is something that I have had a great experience with through Lipscomb. This opportunity has helped me grow in skills I can carry with me forever, and I think it has helped prepare me for my future goals in independent living. I hope that more colleges and universities will take steps towards providing student programming that can meet the needs of students with disabilities and set them up for success.

HOUSING

In the future, I feel like there is the potential of having more and more recipients in homes like ours – supported living homes with staff who respect and care about the clients they serve. Our goal in community living is to give person-centered care, meaning that individuals with disabilities living in supported homes have opportunities to make choices about their lives, from what they want to eat to choosing new roommates. They’re involved in every aspect of their care, including their ISP (Individual Support Plan) goals.The recent changes in funding have been a barrier to having more individuals with disabilities in person-centered community living arrangements that meet their needs. We have to plan their placement carefully based on client needs and income so that appropriate housing options will be available to them.

Another challenge, aside from funding, is prospective clients’ needs. Some adults with disabilities may need more structure or a more restrictive home setting than we can provide. If someone’s needs exceed the level of support we provide, that restricts them from living in the community, because it may impact the others in the home. Some clients also have medical issues, and we do not have skilled nurses working in our homes. Instead, we must train our clients in self-care so they can give themselves insulin shots or check their heart rate. We also need services that can deal with mental health in combination with other disabilities so we can grow and work with more clients. Currently, there aren’t any therapeutic community living programs that can really tackle mental health issues along with other disabilities. Even though some disabilities should be primary, a person’s mental health is usually overshadowed by their disability. Our current interventions don’t solve the mental health issue, so we need some real treatment professionals who are trained in trauma and how it impacts our adults with disabilities. A therapeutic supported living home or agency with trained professionals would greatly benefit adults with disabilities who have experi-enced trauma. These supports would enable them to become more successful and could also help in deescalating crises as they arise.

The last barrier we’re experiencing right now is short staffing. I’ve been director of Residential Services for a while, but I’ve been working in houses due to lack of staff, along with our organization’s executive director. Our priority is to ensure our clients receive proper care and can continue to enjoy their community. Therefore, our administrative team has spent a great deal of time in our homes recently. Retaining staff is difficult, because jobs in other fields can offer much more money than we have available through our funding sources. And our staff must have a heart for this work. It’s not a glamorous job, and you have to be willing to work through some difficult situa-tions at times. This population is so appre-ciative of everything we do for them, and it’s so rewarding. It’s a heartfelt job, and I know we’re making a difference by helping our clients live as independently as they can.

As told by Dr. Rondi (mother) 

My name is Kezia, and I am 32 years old. I have lived in Tennessee pretty much my whole life. I lived in Knoxville most of my life, and now I live in Nashville. When I was in high school, I thought about being a writer, being a poet, and doing art, and ultimately, I settled on wanting to be a tour coordinator for the music industry. Currently, I work at the hospital, but I also advocate for people like myself in my free time. I do a lot of advocating, and I’m hoping to be a paid advocate someday. I’m not going to say it’s going to happen immediately; I’m just going to say I hope to be one someday.For me personally, community living is about wanting to be independent. You want to be able to pay your own bills. You want to be able to say, “Hey, I bought this, and I didn’t have anyone help me. I didn’t rely on anybody, and this solidly mine.” I feel that community living is great, but there’s so much more we could possibly do. A lot of people, like myself, just want to be able to live on their own, but how? How can we make it possible for us as individuals to own a house? With disability and Supplemental Security Income (SSI) laws, it is very difficult.Currently, I live in a house with two house-mates. The house is owned by Caregivers, a home care company. My roommates and I do a lot of stuff together: we go bowling every Friday, and we go out on the weekends. My favorite thing about my current living situation is that I don’t have to answer to anybody. I am my own boss, and I can do whatever I want. I would like to be living in a townhouse in New York or California with my cats. For people who are interested in community living, I want to tell them, don’t give up. There’s always a time and a place for everything. You can be independent. You just have to convince not just yourself that you can, but your family, too. You have to try, because if you don’t, you’ll never know if you can.