Jamie Junior is in the market for a wheelchair accessible van but the cost is steep — up to $50,000 for a used one.
In the meantime, Junior relies on the City of Detroit’s paratransit services to get to and from work. But the system is not efficient, she said.
Junior has cerebral palsy and osteoarthritis. To use the city’s paratransit service, She must up at 5 a.m. and may not get home until 7 p.m. It can take up to half an hour to commute the eight or so miles to her job, and when she’s done with her shift, she waits another 30 to 45 minutes to get picked up, then another hour or more back home.
Transportation — and just getting around one’s neighborhood — is a big barrier for people with disabilities, she said. It’s one of the challenges, advocates say, that contributes to the financial instability nearly half of people with disabilities in the state face.
Add rising costs, trouble finding work and difficulty getting affordable housing and economic hurdles are that much harder to navigate.
“If you are lucky enough to be in the middle class and live in a two-income household, you get some relief. But again with inflation being what it is right now, if you want to be in a position to build wealth — which would require you to own a home and things like that — you’re up against the gun,” said Junior, 46, of Detroit.
More than half of disabled Michiganders are financially struggling
In 2019, more than 650,000 people with disabilities in Michigan lived in poverty or were unable to afford the essentials — housing, child care, food, transportation and health care — according to a July report from the Michigan Association of United Ways and research hub, United for ALICE (Asset Limited, Income Constrained, Employed).
Roughly 1.3 million people in the state had a cognitive, hearing, vision or ambulatory (meaning they have difficulty walking or climbing stairs) disability, the report notes.
Black and Hispanic Michiganders with disabilities were more likely to live in households that experienced economic challenges compared to white and Asian residents.
Seventy-two percent of Detroiters with disabilities lived below the “ALICE Threshold,” meaning they had trouble affording the basics.
“Disabled people are part of families in Michigan. It’s not just the disabled people who are stuck in this cycle, it’s actually a lot more people, too,” said Dessa Cosma, executive director of Detroit Disability Power.
The numbers are not surprising, advocates said. They reflect the reality that they already knew existed.
“People with disabilities are three times as likely to be unemployed, and three times as likely to be out of the labor force altogether,” said Stephanie Hoopes, national director of United for ALICE.
That’s something Leatrice Fullerton is all too familiar with. After graduating with a master’s in social work in 2010, she spent three years looking for work.
Fullerton, who is blind, said employers were hesitant to hire her because they doubted her abilities. The application process itself was inaccessible for her screen reader — assistive technology which provides an audio description of text. Jobs required a driver’s license even though you didn’t need to drive to do the work, she said.
“At the time it just was a really low period for me because I did what they said I should do — I went to school, I got the grades, I got the degree and I still am not able to provide for my children,” said Fullerton, who was a single mom then.
She now works as an advocacy and community education director for the Disability Network Southwest Michigan. She knows what it’s like to be “on the other side of the desk.”
The ALICE report found that during the pandemic people with disabilities were more likely to report a loss of work, had a harder time paying bills and struggled to afford food. This was based on the U.S. Census Bureau’s Household Pulse Surveys from July 2021 to February 2022.
Advocates say there were some accessibility advantages like telehealth appointments but there were concerns, too, around the safety of home health care and public transportation.
Making too much, but not enough
Advocates say one of the main challenges people with disabilities face is the so-called “benefits cliff,” which can limit wealth building and keep families in poverty. This is when employment income increases and benefits phase out or go away.
“The challenges to working are more than just a difficulty with getting a job or having the ability to do a job, it’s also about the benefits that people rely on … that they risk losing if they become financially independent. It’s a Catch-22,” said Kristen Milefchik, a vaccine advocate with Disability Rights Michigan.
The cost of living is higher for people with disabilities, advocates said. Power wheelchairs, personal care and assistance technology all cost money, Cosma said. The price tag for a wheelchair accessible van alone might be $60,000, she said.
But it’s not just cash benefits that are at risk, Milefchik said. If a person somehow loses Medicaid because they earn too much money, they may not be able to afford to pay for the cost of care out of pocket, she said, reflecting on her own experiences. Employer insurance may not cover long-term care. That may lead a person to quit their job and get back onto programs like Supplemental Security Income (SSI).
And so the cycle continues, advocates said.
Even then, programs like SSI are limited, Milefchik said. For one person in Michigan, that’s $841 a month. What’s more, the United for ALICE report found that 82% of people with disabilities in Michigan, who struggled to afford the basics, did not get SSI. To qualify, a person can’t have more than $2,000 in assets. The cap is $3,000 for a couple.
Milefchik — who has a form of muscular dystrophy and has used a wheelchair her entire life — spent much of her adulthood on SSI but still had to have roommates to share caregiving support services and cover expenses.
“Trying to become financially independent is incredibly hard,” said Milefchik, 41, of Inkster.
She said she has “survivor’s guilt” because she’s now in a good place for once in her life.
“I know what it’s like and I know the hopelessness that people feel trying to get through all that red tape, trying to deal with all that bureaucracy, being denied for services that they need over and over again,” Milefchik said.
Disability ‘not a place of deficit’
There are more than 128,000 Detroiters — or one out of five residents — living with disabilities, according to the American Community Survey.
“There needs to be advocates in every city department that can help folks get what they need from city services. You shouldn’t have to sit on the phone or be tossed back and forth from department to department when you need a tree cut down because it’s impeding your ability to cross the street safely or the roads are crumbling on your way to the bus stops,” Junior said.
The City of Detroit has a three-year plan to increase accessibility for Detroiters with disabilities. Christopher Samp, director of the the City of Detroit’s Office of Disability Affairs, said in a statement last month that his office is focusing on improving housing options, employment, transportation services and raising disability awareness.
The Detroit Department of Transportation, he said, is working to bring paratransit in-house. Right now, the paratransit services are provided through a third-party vendor, but in the coming months the city’s transportation department will take over management. The goal is to offer more consistent and reliable service, Samp said.
“Mayor Duggan agrees the current paratransit services are inadequate and has made it a priority to make significant improvements. He has plans for improving booking appointments and contracting with first-class providers to provide transportation,” he said.
Samp pointed to an upcoming affordable housing locator website where people will be able to search for the homes they want and said that all new developments and renovations must comply with the Americans with Disabilities Act. Earlier this year, city officials broke ground on a 14-apartment development specifically geared toward low-income disabled Detroiters.
“Most developers follow the bare minimum requirements for accessible housing, which is hardly enough to accommodate 19.2% of the overall Detroit population who are residents with a disability,” Samp said.
Tameka Citchen-Spruce left Detroit for the suburbs four years ago because she struggled to find accessible housing within her budget.
Citchen-Spruce, who uses a wheelchair because of a spinal cord injury, looked at a number of places in and around the city. She searched for homes without stairs and with wide enough hallways. The litmus test: was the bathroom too small to close the door behind her?
Her Detroit house at the time wasn’t up to code, she didn’t have access to healthy food nearby and the sidewalk wasn’t paved. Her family made the decision to move to Southfield.
She was frustrated, stressed and angry.
“You have to go through these extra hoops and hurdles as a person with a physical disability,” Citchen-Spruce, 37, of Redford, said.
Advocates say increasing accessible housing and ramping up incentives to hire disabled individuals are key areas that need improvement.
Lori Hill-Sanders, executive director of the Disability Network Wayne County Detroit, said education is important. Her organization works with high schoolers with disabilities, helping them transition into adulthood through career exploration and job readiness.
Some issues — like asset limits and safety net programs — are decided at the federal level, but when it comes to policies and programs, advocates said, cities and states governments must fully include people with disabilities in order to meet their needs.
“We end up getting this afterthought, work around, side job access to things and then we fall through the cracks and then we get blamed for falling through the cracks,” Cosma said.
Disability, she said, is not a place of deficit.
“They’re really important, essential parts of who we are and places of power for us.”