& Economic Stability

Disability and the Ultimate Gamble Unpacking the link between Poverty and Disability

by Jeiri Flores, Carrie Burkin, & Liyen Lee

Being disabled is a lot like playing the lottery. You find an accessible bathroom, you won the lotto. You find an employer who is willing to pay for outside of the box accommodations, you won the lotto. You move into a newly built apartment complex that is affordable and accessible, you won the lotto. You attend a high performing school that acknowledges and values your existence, provides you with the supports you need to succeed, you won the lotto. You have the option of taking an Uber or the bus or you have the capital to own your own car, you won the lotto. Every piece of life for people with is a calculated, high stakes gamble that either leads to feeling like you won the lotto or the constant disappointment of never hearing your numbers called. Historically society has treated people with disabilities as less than. Hence the feeling of winning the lotto even when just achieving the norm. There have been multiple times in this country when people with disabilities have had to protest to obtain basic access.

The American’s with Disabilities Act (ADA) was signed into law 30 years ago, and in its simplest terms, it is a safeguard piece of legislation to guarantee people with disabilities aren’t discriminated against. Yet,

people with disabilities in the city of

Rochester, battle against stigma, low expectations, lack of access, lack of inclusion, and lack of visibility, which has hindered many of them from living an autonomous life. There is a direct link between disability and

poverty. In fact, according to Census data,

over 34,000 Rochestarians had at least one disability. In Rochester, the poverty rate for people with disabilities was 42.1%; 9.2 points higher than those who were not disabled. Overall, 22% of all people in poverty in Rochester had at least one disability (Doucette 2018 p.2). Despite these numbers, people with disabilities are often not invited to be part of the broader conversations that take place in our community. In this white paper, we focus on the link between disability and poverty. Through interviews, research and reflecting on our own lived experiences we have worked to unpack how poverty affects people with disabilities in unique and sometimes deeper ways. We have also discovered a few of the steps our community needs to take to improve the quality of life for people with disabilities. We know that four common domains of life impact the intersection of poverty & disability; employment, education, housing, and transportation. The bulk of this white paper will focus on diving into each. The final section will highlight recommendations for change.

In case you didn’t know….

Because disability is defined differently in many places, it’s important to ground this work in a common definition of. The Americans with Disabilities Act (ADA), Section 503 of the Rehabilitation Act of 1973 and Section 188 of the Workforce Innovation and Opportunity Act), a person with a disability is typically defined as someone who (1) has a physical or mental impairment that substantially limits one or more "major life activities," (2) has a record of such an impairment, or (3) is regarded as having such an impairment.

Disability and go hand in hand. One can’t be discussed without the other as accessibility, for people with disabilities, is key to living a life without barriers. Accessibility can be defined as the degree to which a product, device, service, or environment is available to as many people as possible. Bridging the gap between disability and accessibility is a major theme of our white paper because as the door to accessibility opens, opportunities are created, when opportunities exist, poverty is mitigated.

Housing - “It feels like a take it or leave it situation with the quality of housing offered to people with disability living in poverty” – Michael P

It is known that lack of access is an underlying theme in the lives of people with disabilities in all areas however, this accessibility gap shows up large on the topic of housing. The lack of accessible, affordable and safe housing is a major life barrier for people with disabilities.” A 2011 study conducted by the U.S Department of Housing and Urban Development (HUD) stating that less than two percent of available housing stock is accessible, particularly to those with mobility difficulties. Fewer than five percent of units were livable by a person with a mobility disability.” (Doucette 2018, p.8) Without stable, accessible housing it is difficult to secure employment, without gainful employment, disabled people are forced to rely on government assistance. This keeps them living in poverty. This cycle is like running on a wheel that is difficult if not impossible to jump off of. “The Center for Disability Rights has stated that lack of housing is a leading barrier in moving disabled individuals from institutions and into the community. An inability to live in the community can significantly impede a disabled person’s efforts to become employed, and thus, increases the probability of living in poverty” (Doucette 2019, p.8). In order to live a full life filled with freedom and autonomy there has to be the opportunity to expand your wings and explore independence. While independence for people with disabilities looks different for everyone, having the chance to live in your own space and on your own terms gives a sense of freedom like no other. For instance, when people play the lotto they dream about what they would do if they won, the kind of house they’d buy and what that space would look like. People with disabilities in Rochester are dreaming about that right now, they are hoping and praying to find an affordable and/or accessible place they could move into and make it a space of their own.

The Real Deal: Meet Jensen Caraballo & Michael Patterson

Jensen Caraballo is a Mike Patterson is a

30 year old Rochester 38-year-old native who lives with Philadelphia native SMA two, a rare who moved to genetic disorder. He Rochester two years was able to move into ago. He currently lives his own apartment with his mother and seven years ago after younger brother. Mike apartment hunting for has been apartment two years. When asked hunting since he about his experience he stated “finding an relocated. When affordable accessible apartment is as rare as askexperienceed about he stated his “The housing part is winning the lottery. I have been trying to move experiencethe hardest part to navigate. I’ve been from my current apartment for the last couple able to advocate for better doctors; I’ve of years but haven’t been able to because I been able to pivot in this disability world to want to move into something that’s really get what I need but not a place of my accessible and comfortable for me. I settled for own. With housing you have to get on the my current apartment because it was my only list to wait but it’s also easy to fall off the option. I can’t do that again. So I sign up for the list.” waiting lists hoping someone calls.”

People with disabilities often have even fewer housing options, because they may need accessible housing or specific accommodations. Nationwide, it's estimated that 80 percent of adults with developmental or intellectual disabilities live with their families (Petrovic, 2019). Overall the system at play has created a very small window of opportunity for people with disabilities to live with autonomy in their own homes. Not only is there a limited amount of affordable apartments there is an extremely limited amount of affordable and accessible apartments. Each time, sacrifices for one or the other are made. Supply simply does not meet demand.

Education – “I can’t imagine parents that have kids in the schools now, for me the whole IEP/ 504 was a disaster in terms of getting the help that they need, for me it seemed like my childrens’ education wasn’t important.” – Trelawney M

Given that education is vital in shaping The Real Deal: individuals’ values, worldviews and preparing Meet Ella Burkin & John Vega people for better paid-job in adulthood, all people should have the equal opportunity to access Ella Burkin is an 18- education for a better quality of life. However, year-old Rochester native who lives with people with disabilities are often at the . disadvantage of seeking equal chances of She attends Holy appropriate education or face many barriers Childhood, a private while accessing education, such as “school fees, school for students transportation cost, parents not having time to with disabilities. accompany children to school” (Limaye, 2016, Her mother advocatedElla’s on her behalf p47). so that she could have the opportunity to attend a school that would promote A report on in the Rochester autonomy and create a space for her City School District found the district does not to be included. She believes that Ella would have slipped through the adhere to policies and graduation rates for cracks in any other educational students with disabilities is low (Doucette, 2018). setting. At Holy Childhood Ella has the Access to school and school completion is chance to plan for her future. harder to achieve, particularly for people with disabilities. Hughes (2013) stated that “living in poverty increase the likelihood that students with John Vega is a 25- disabilities will experience poor post school year-old from outcomes, such as low graduation and post- Rochester who lives with dyslexia and secondary enrollment rates and increased ADHD. He engagement, unemployment, and graduated from a underemployment” (Hughes, 2013, as cited in public school in the Newman, Wagner, Cameto, & Knokey, 2009). Rochester City School District. After graduation he Access to high quality education is not only a attempted college but was problem for k-12 students with disabilities, but for unsuccessful as he was not taught post-secondary education as well. The the proper advocacy skills to request Individuals with Disabilities Education Act accommodations or identify his (IDEA), which is the federal law that supports needs. John struggles with written and funds services in k-12 is not currently communication which has made it available for college students. difficult for him to obtain full – time employment.

Employment – “Because we don’t make a lot of money we don’t have big voice” - Mike P

In the world of disability employment is a permanent hot topic. The idea that people with disabilities are actually able to work is relatively new. The belief that people with disabilities are better off in protected, limited environments such sheltered workshops for the good of themselves and society The Real Deal: Meet Jeiri Flores is still being perpetuated by schools today. Self- advocates all around the country are constantly fighting to end the use of sheltered workshops and are calling for a transition into competitive employment. In the city of Rochester “employment for disabled individuals is low. According to the census, only 6,080 individuals with at least one reported disability are employed” (Doucette, 2018, p.4). This bears the Jeiri Flores is a 30 year old Rochester question why is the employment rate so low? Is it native who followed what is said to be because people with disabilities aren't interested in the American plan to success; she working or is it because they are seeking graduated high school, graduated employment and not being hired? In the college and was eagerly awaiting her employment sector not only do people with opportunity to join the work force. disabilities face discrimination they combat When asked about her journey to as well. "Employers are scared to hire us," says employment Jeiri said “Searching for Eagle, "because they don't know what kind of and obtaining a job as person with a accommodations we require. And if they don't meet what we consider to be reasonable disability is like trying to play an accommodations, they're afraid we'll sue them" impeccable game of Tetris. You have (Fessler, 2015, p.3). to be the best candidate for the Additionally, the existing disability system and asset position; your work environment has to limits create a disincentive to employment for be accommodating; and most people with disabilities. People with disabilities importantly, you have to be able to cannot have more than $2,000 in assets, or their create some sort of balance between benefits start to be impacted. “So you're the services you receive, your health, saying that because she has a disability she can income, and health insurance. If at any only make so much money. She’s limited, why? So time, any of these pieces land in the is that her fault? You penalize her because she has wrong place on your Tetris board, you a disability? I think that, that just goes back to the stand to initiate a ripple of destruction. whole poverty mentality. If you're not wealthy, if you But honestly, for an opportunity to play don't have that money, then you're not entitled to it” our best game of Tetris, we’d all take (Trelawney M, community member interview April 8, that chance; we’d dream bigger and 2021, speaking about a person she knows well). strive to make all the pieces fit The relationship between income and people with together.” disabilities is complex. While people with disabilities would love to work and make a livable wage, that opportunity rarely exists. And for those who do find jobs, they are quite often financially penalized by the government funded agencies who provide them the services they need to live. Without access to an expendable wage, people with disabilities struggle to plan for their futures. Every facet of life requires capital. You cannot lease an apartment or buy a home without money. You cannot afford transportation or the upkeep of a home without money. Moving out of poverty requires money and the only way people with disabilities can make money is if they are given the opportunity to work. Therefore, finding a job that is willing to provide suitable accommodation is like winning the lotto. It opens the door of abundance and gives people with disability the chance to not only take care of themselves but the freedom to do and buy the things they want not just need.

Transportation –

"I'd spend about three hours in transportation daily when I was riding the lift. So think about three hours out of your day in which you're not doing anything" (Fessler 2015).

Having access to transportation makes the lives of people with disabilities easier. Not only does it increase autonomy, it gives people options, and is critically important to accessing employment opportunities. Without this choice, people lack the ability to get to their job on time and find it nearly impossible to have a social life. Mike P. said it well when he said, “Just because you are disabled doesn’t mean you don’t have outside obligations.” Now think about the realities of your job – would it be acceptable if your arrival was unpredictable? If your departure was out of your control? “Many rely on a special lift service provided by the city to get around. But those rides have to be booked at least a day in advance, and often involve long waits and complicated schedules.” (Fessler,2015,p.5).

While the needs for people with disabilities vary, lack of access to transportation is a barrier across the board. For some it is the cost, for others it is the lack of training and awareness for public transportation drivers.

Disability price tag is also a major contributor to the issue; as people with physical disabilities who need modified vehicles are expected to pay a higher cost per vehicle and or accessible taxi ride. Therefore, when we think back to playing the lotto the people who have their own vehicles have won, but at what price?

Disability price tag – Disabled people are charged more for essentials (Grant, 2019)

The Real Deal:

Conclusion & Recommendations –

“We are each other's harvest; we are each other's business; we are each other's magnitude and bond.” ― Gwendolyn Brooks

In conclusion people with disability are effected by poverty at a deep systemic level. Housing, education, and transportation are interconnected to employment and poverty. Therefore, you cannot flourish if even one realm of your life falls short. Being disabled in the City of Rochester means that you are constantly searching for ways to improve your quality of life. Constantly hoping that the existing structures will allow you to build, plan and foster an autonomous life. “I want what every other person deserves and gets, I’m not even asking for more than that” (Jensen C, personal communication, May 7 2021.). Therefore, when we examine poverty and its effects on people with disability we must acknowledge how much work needs to be done as a community. “I just think that if people were valued and held to the same standard that's the name of the game. There's value, in valuing everyone the same way” (Trelawney M, community member interview, April 8, 2021).

During our policy maker interview last month, Miguel M. told us, “To change the hearts and minds of people we have to do more around awareness.” Through our research it was brought to our attention that rarely is the lived experience of people with disabilities discussed out loud. We recommend that those in power are intentional in their efforts and create spaces on committees, special task forces, boards, event planning committees and staff for people with disabilities. We believe it is also in the best interest of those serving the Rochester area to address the current gap in knowledge of the realities people with disabilities face.

In order for this to happen a chain reaction of change needs to happen in the City of Rochester in every conversation that is had. The goal should be that everybody wins the lotto and that we all live life on our own terms. For this to happen, we recommend the following:

Recommendations  Housing: o Fewer than 5% of housing units in the City of Rochester are accessible to people with mobility disabilities. We recommend the City of Rochester make a concentrated effort to increase this number to 20% over 5 years.

 Education: o The Rochester City School District needs to: . Ensure students have identified a desired post school placement— postsecondary education or employment—prior to school exit, . Assist students and their families in making the transition to this placement, and . Coordinate post school services and supports to ensure placement and outcome success . (Hughes, 2013, p.40, as cited in Hughes & Avoke, 2010).

 Employment: o The City of Rochester needs to provide training and support to businesses for accommodations so that businesses will hire more people with disabilities. Potential partners in this work could include the Strong Center for Developmental Disabilities Community Consultation Program.

 Transportation: o The City of Rochester needs to pilot an alternative inclusive rideshare program to support employees with disabilities.

 Inclusion of People with Disabilities: o Increase accessible opportunities for people with disabilities to share their lived experience with the community. o When planning, local government officials need to invite people with disabilities to the table. o Community leaders must take a step back and learn about the realities people with disabilities face as they navigate government funded financial assistance and health services.

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