Working: Beating the Odds

By |2017-01-13T20:42:15+00:00October 1st, 2014|
Contact The Editor

Photo by Loren Worthington/WorthingtonVisuals.com

Photo by Loren Worthington/ WorthingtonVisuals.com

Everyone is familiar with those dismal statistics showing full-time employment and severe disabilities don’t mix, especially for wheelchair users. But with preparation, perseverance, the right situation and a good helping of luck, you can still beat the odds.

Renee Tyree, 49, knew what she wanted from an early age. Drawn to science and interested in helping people, by the time she was in high school, she had decided to be a doctor. Her clear focus and intelligence enabled her to graduate at just 16 years old. But as a pre-med student at the University of Wisconsin – Parkside in 1985, she was diagnosed with transverse myelitis, resulting in lower limb paralysis, which caused her to rethink her plans.

“After rehab I went back to college, using my SSI and Voc Rehab, but I got really frustrated. Everyone kept telling me I couldn’t be a physician,” she says. “They would steer me toward a desk job. I had to take a year off and adjust and eventually decided I could be a doctor of pharmacy. Science was my passion.” She went back to her studies part-time, but the cold weather, snowfall and inaccessible campus kept getting in the way. It was the mid-1980s and the ADA had yet to become law.

Renee Tyree took a year off from managing a pharmacy in 1996 to participate in the Atlanta Paralympics.

Renee Tyree took a year off from managing a pharmacy in 1996 to participate in the Atlanta Paralympics.

She started researching colleges in warmer climates and eventually chose the University of Arizona in Tucson. “They welcomed me with open arms,” she says. “They had a disabled students resources department that was very helpful. I didn’t know a soul.” She ran into problems with lab access and older buildings, but her counselor became involved. “She worked it out with the school so I could do my lab work with an assistant, but I insisted that they supply the assistant, not me.” She graduated, taking custom-designed courses just to get into pharmacy school.

By this time she was well-acquainted with the need for assertive problem-solving in order to get what she wanted. In the middle of her pharmacy school studies she decided she wanted to take a year off to play wheelchair basketball and participate in the Paralympics in Spain. “I had always been an athlete in high school. It kept me focused, motivated, engaged. I proposed it and the College of Pharmacy got behind the plan. I would be the first to do something like this.” In 2012 another Paralympian from the University of Arizona’s College of Pharmacy, Jen Poist, followed the precise path of Tyree’s wheel tracks.

A year later, returning from Spain, she resumed her studies and graduated as a doctor of pharmacy in 1993. Then came the hard part: getting a job in her chosen field.

Overcoming Obstacles, Making Steady Progress
Tyree applied for a position with Rite Aid and did well in a phone interview. “I was pretty much assured that I had a job as a pharmacist intern over the phone.” But when she showed up for a tour of the pharmacy, she ran into blatant discrimination. “The guy wouldn’t even let me into the pharmacy. He took one look at my wheelchair and decided it wouldn’t work.” Which only shifted Tyree’s problem-solving abilities into overdrive.

“When I applied for my next job at a grocery chain pharmacy, I had every detail figured out, from how to wheelie up a half-step to moving around inside to carrying things on my lap, working with customers, everything.” She managed the pharmacy until 1996 and then took another year off to compete in the 1996 Paralympics in Atlanta, again with the blessing of her higher-ups. “It’s all about how you approach people with your ideas,” she says. “You can’t have a chip on your shoulder. You win them over and they will buy into it.”

Tyree had good role models to learn from. Her brother was born with cerebral palsy and her parents were active advocates. She witnessed firsthand how to make her way successfully in the mainstream. “My brother went to college and got a job as a switchboard operator. He was my role model.” Now, 20 years since graduating with her pharmacy doctorate, she has climbed the corporate ladder, progressing from pharmacy manager to manager of pharmaceuticals at a new rehab hospital, to regional manager of 15 hospital pharmacies, to pharmacy clinical implementation specialist, a position she assumed in May of 2014.

“It’s my needle-in-a-haystack job,” she says. “I became interested in computer operations in the pharmacy field, so now I travel around setting up different HealthSouth hospitals with their computerized operations systems, and I love it.” She is part of a clinical implementation team that spends 10 weeks at each hospital installing systems and training employees how to use them, then moves on to another hospital.

What is the secret to her continuous success from the time she became disabled in 1985 until now? “I never lost sight of what was important to me, my love of science. I had to tweak my plan from time to time, but always stayed within my larger vision,” she says. “You have to be clear on what you want. And of course, I was fortunate, lucky. I could do without attendants and had no transportation problems.”

It’s clear from talking to her that her success has a lot to do with her winning personality as well. “You have to put people at ease, be firm in what you want but give them a chance to ask questions,” she says. “Be nice to people!”

Overcoming Long Odds
Justice Ender, 29, of Missoula, Mont., was born with VATER Syndrome — slanted pelvis, legs of different lengths, small stature. His story is a classic version of beating the odds. He had difficulty walking, was abused as a child, had to be placed in a group home, and an adoption didn’t work out. As a high school senior, he lived in an apartment with no running water. “I’ve lived with no water, no heat, no transportation. I was nearly homeless,” he says.

Justice Ender’s persistence enabled him to eventually buy his own home.

Justice Ender’s persistence enabled him to eventually buy his own home.

He failed at his first try at college — the campus was inaccessible, getting around was almost impossible. But when he moved back to Missoula, he found a helpful Voc Rehab counselor, enrolled at the University of Montana and majored in journalism. His determination kicked in. “As a senior I created an intern position that didn’t exist before and started working at Summit ILC in Missoula. When that job ran out, I volunteered, helping with the newsletter and media stuff.”

He started a PASS

[Plan to Achieve Self-Support] before graduating, which helped pay for an adaptive vehicle. By this time he was using a wheelchair. He graduated in 2010 and kept active, working part-time. But he was stuck at earning $600-$700 per month. Finally he landed a full-time paying position with his local CIL as a media specialist, escaping the “benefits trap.” He also is a talented freelance writer whose work has been published online and in magazines.

After settling into his full-time position, Ender was able to purchase his first home in the summer of 2014. Now he is happy where he is. “It would take a killer job for me to move. I love it here.”

What advice does he have for other job seekers? “Try real hard to avoid a resume gap. Prove you want to work,” he says. “Employers think you are not ready to work if you are not busy. And network with others. Networking puts you in touch with people who might hire you. You’ve got to put your best self out there.”

Small Town Success
Liz Davis, 24, works full time for HALO Branded Solutions, in Sterling, Ill., as a web catalog administrator, maintaining web/eCommerce stores and designing and building new ones for the company’s clients. Liz was born with sacral agenesis and uses a power chair for outside travel and a manual chair when inside. She credits growing up in Sterling, a town of 15,000, with helping her get a job right out of college. “Everyone knew me because I was one of just a few wheelchair users in high school.”

Liz Davis carefully chose a field that matched her interests with her lifestyle.

Liz Davis carefully chose a field that matched her interests with her lifestyle.

How did she decide on her field of interest? “I asked myself, what job can I do that I’m good at that I can support myself and be independent?” Her interest in computers and art steered her toward graphics. “We had a ‘Techzone lab’ in high school where I learned Photoshop, Illustrator and other programs.” She moved to Clinton, Iowa, right out of high school to attend Ashford University, graduated in 2012, then returned to her home town.

“I was very lucky to find a job related to my college degree in my hometown,” she says. But it wasn’t all about luck. She used her graphic design skills to generate interest in her as a potential employee. “Branding is a big thing for me. I created a personal logo and integrated my design skills into my portfolio, my resume, and my letters.”

In choosing her field she knew she would be able to work from home if needed. “At first I was worried about having to miss work for medical appointments. But after getting this job I’ve found that good places will work with you. They will see your eagerness to do a good job. Once I confessed to my boss that I felt bad for all the time I missed with doctor’s appointments, and he said, “Liz, everyone misses work, you aren’t the exception. People have kids, or medical issues of their own, or some just take the day off.”

Davis says she always makes up time she misses and is thankful for a job that allows her to be flexible. “I work my hardest, and strive to be better. What more could an employer ask of their employee, disability or not?”

Taking a Chance
Kip Johnson was six months away from graduating high school when a skiing accident hospitalized him for four months with a C5-6 complete spinal cord injury. Fortunately, his aunt, a retired teacher, wanted to help. “She helped me do all my school work before I even came home from rehab. I was home-schooled right in the hospital, thanks to her.” He graduated with his class in 2004.

With help from his parents, he decided to devote the next couple of years to extra rehab with Project Walk, first in Los Angeles, then back in Portland, Ore. Johnson’s family lives in Damascus, about a 40-minute drive to downtown Portland.

Kip Johnson and his fiancée.

Kip Johnson and his fiancée.

Then he tried odd jobs, mostly sales and computer-related work, but it didn’t pan out. “I really didn’t know what I wanted to do. I wasn’t very successful at it.” Living with his parents, he enrolled in Mt. Hood Community College and took business classes with a plan of becoming an insurance agent, earning his associate’s degree in 2009. But selling insurance didn’t work out, either, and that was followed by a serious bout with pneumonia that kept him in ICU for two months. “It took six months just to recuperate at home,” he says.

Then he took a chance and his life took a turn for the better. At the suggestion of a real estate agent-friend of his mother’s, he got a real estate license and started working for John L. Scott Realtors near Damascus. “I loved it,” he says. “I found what I wanted to do. I do it all — show homes, sales, office work, you name it. If needed I get someone from my family to meet me there and help me up steps, whatever it takes.” He is able to use a manual chair, which simplifies access.

He works as a partner with his mother’s friend as well, but the bottom line is he is making sales. “Last year I did OK for openers, but this year I’m meeting my goals. Right now I could make a living on my own, but the hard part is figuring out how to keep health insurance and all.” Johnson, now 29, still lives with his parents, but he and his fiancée (their wedding date is in August 2015) are planning how to invest money so they can get through sales dips and potential health problems.

“My dream job is to have a big cattle ranch one day,” he says. With the latest listings at his fingertips, he just might do it.


Getting Real About Getting to Work

By Gary Karp

So you’re ready to jump into the employment fray. Excellent.

Time to get real.

Your potential employer has some getting real to do, too, but it starts with you. Here’s the first thing you should do: Forget about your disability.

Start by showing them that you’re qualified and prepared for the job. You want the job. You know what they do, and you want to work for them. Get real about that. Right now.
Business exists for profit. Government and nonprofits have “missions.” However much lip service either pays to hiring people with disabilities (you might even find a well-worded statement to that effect on their website), when it comes down to it, all they care about is finding the best people to help them succeed.

As it should be.

When you get real about their priorities, then you have the best chance of them getting real about who you are. The sooner they see a qualified person who wants the job, the sooner they can get properly oriented to your disability.

More and more people involved in hiring understand that disability by itself does not preclude success in a job, that people with disabilities are more capable than ever in this transformed modern society. But you might just as well find yourself facing someone who is uptight about it, stuck in the stereotypes. Or they might be nervous about crossing a legal boundary. Asking specifically about your disability, for instance, is verboten.

So get to the next step and talk about your disability issues that are relevant to the job. Open up the conversation and give them permission to ask questions. Be prepared to describe whatever “reasonable accommodations” (ADA language) you might need (if any), and help them see that your disability won’t prevent you from knocking the job out of the park. (That assumes, of course, that you’ve chosen the right job to interview for, have a well-constructed resume, and present yourself well.)

They don’t even need to ask about your disability. All that matters are the “essential tasks” (HR language) of the job. Explain how your disability might or might not affect the way you will perform them. (It might be entirely irrelevant.) That will help them relax and assess you properly, which is entirely possible.

Still, it does continue to show up in surveys that some employers operate under grave misconceptions about workers with disabilities. They’re concerned you don’t have the skills, won’t be as productive, and will be hypersensitive to being evaluated or disciplined. Some even doubt whether they’d be comfortable being around you.

You may well find such shortsighted and essentially discriminatory views offensive. Fair enough. But if you go in assuming that you’re being seen through these misguided lenses, you’ll just make it harder for them to see who you really are and how you can contribute to their success. You’ll be obscured behind your own defensiveness.

You might even play into some of the most insidious disability stereotypes — the angry cripple who is easily upset, or that your impairments have impaired your self-esteem. Put the inescapable truth in front of them; be professional and confident, and everyone’s odds will improve.

Presumably you want to grab for the range of possible benefits of success in a job. Work offers you a sense of being productive and valued, pitching in to something that, hopefully, means something to you. Work gives you more confidence. You get to build relationships of respect with your co-workers, and possibly in a broader professional community. Best of all, you’ll earn your own living, giving you greater independence — not to mention freedom from the bureaucratic morass of benefits programs.

These are the prizes you should have your eyes on. But there’s another super-critical thing you need to get real about: Be prepared to take the consequences if you don’t step up. Consistently fail to perform on the job, or indulge in inappropriate behavior, and you get your ass fired.

As it should be.

The worst thing you could do is play in to an employer’s assumptions that people with disabilities have a built-in sense of entitlement, expect the bar to be lowered, or want to be let off the hook if they fall short.

When you land the right job and set high standards for yourself, then you not only score the rewards of work, you help the very culture of work get real about people with disabilities. You are part of a growing and substantially untapped pool of fully qualified workers who happen to have disabilities, who have more to contribute in the workplace than ever before in human history. Get real, help employers get real, and you will have paved the way for everybody else to jump into the fray and live the full lives we all deserve.

Gary Karp is doing his part to help employers get real at www.RealPeopleRealPotential.com.


Working and Navigating the Benefits Maze

By Bob Vogel
This is a story about navigating the Social Security benefits maze and avoiding potential traps, especially with Social Security Disability Insurance. If you are receiving SSDI payments and are also working, earning a little too much income can become an all-or-nothing nightmare.

For instance, a common cause of anxiety among SSDI recipients is the continuing disability review (CDR), which usually occurs every seven years in the case of a permanent disability. However, the Social Security Administration has the option of requesting a CDR sooner. The average CDR examines income from work since the previous CDR, looking for earnings that exceed set limits. In 2014 the limits are $770 per month for a trial work period (TWP) or $1070 for substantial gainful activity (SGA). [See “Dave’s Anecdotal Glossary” and Resources for explanatory information on terminology and various programs.]

With her intimate knowledge of the Social Security system, Ellen Stohl is able to be as employed and independent as possible.

With her intimate knowledge of the Social Security system, Ellen Stohl is able to be as employed and independent as possible.

Working part-time augments income, but earning too much can cause loss of benefits. The ultimate goal is to make enough to break free of benefits, but this requires a huge leap in income. However, understanding the benefits maze, despite being troublesome, can have a positive outcome on a person’s life. Such is the case for Ellen Stohl, 50, who is something of a benefits guru.

Stohl has a daughter, works part-time as a university instructor, and has kept her benefits since becoming a C8-T1 incomplete quad 31 years ago, in 1983.  Having no work history when she was injured, Stohl started off on SSI (Supplemental Security Income), a program for disabled people who have not worked and who have minimal assets (in 1983 SSI paid $314 a month and currently pays $721 a month). She found a subsidized accessible apartment close to her college at Cal State Fullerton that cost $150 a month. Vocational Rehabilitation paid her tuition and books, enabling her to earn a bachelor’s degree in communication, and then a master’s in psychology.

“I learned much of the system via trial by fire, making mistakes, seeking help from centers for independent living as well as case workers,” says Stohl. “These days with the Internet it is much easier.”

With her bachelor’s degree, she taught third grade full-time for three years and paid enough into Social Security to go from SSI to SSDI — where payments are based on prior earnings — and her monthly benefit amount increased almost sixfold! With her new job she used up her trial work period,  and since Social Security knew she was working full time, Stohl figured they would stop sending checks when her benefits ran out. But checks kept coming. So she reduced her teaching hours to part time — earning less than SGA — to get her master’s degree.

She then received notice from Social Security saying due to her full-time work, her benefits ended the previous year and she owed a massive back payment sum. After speaking with a social security worker, however, she got an immediate expedited reinstatement — an instant restart of her SSDI claim complete with a new TWP — and was given a schedule for the back payment in manageable monthly installments of $50 a month over 20 years ($12,000 total).

When she got her master’s degree, Stohl worked as a full-time university instructor for another three years, used up her TWP, then set up a plan to achieve self-support (PASS) that allows you to set aside SGA earnings to purchase something to help you work, in Stohl’s case an adaptive vehicle.

The way Stohl’s disability affects her body, working full-time is like running a motor at redline. “I could have continued to work full-time, but I would be risking early physical breakdown,” she says. “For me the key was finding out how much I can work and still stay healthy.” So Stohl cut back to teaching part-time. This also gives her time to spend with her 11-year-old daughter.

She also uses the Medicaid buy-in, which enables her to have in-home support services — state of California-supported attendant care. “Although I look strong and agile, on bad days I can’t do buttons, or transfers for bathroom care.” A few years back, on a bad day, Stohl missed a shower transfer without an attendant, and broke her leg in three places, which required two surgeries.
Although a spouse’s income has no effect on SSDI, it will kick you off the Medicaid buy-in. Stohl and her life-partner, David Lubnow, had a big wedding but never signed legal wedding papers because they didn’t want to risk Stohl’s benefits.

Stohl Offers This Benefits Navigation Playbook:
Save all Social Security documents — forever! At one point Stohl received a continuing disability review that requested work information dating back 20 years! However, when she sent in a copy of her previous CDR approval, Social Security modified the request to only go back to the previous CDR.

Always get a receipt and important information in writing when meeting with a SS representative. If it is a phone conversation, Stohl politely asks for a name and contact info. After the call she writes a letter to the representative, saying, “Per our conversation at this time and date, it is my understanding that …” She then saves a copy and sends the original by certified mail. “The rules can get confusing, even for representatives,” says Stohl. There have been times when she was given incorrect information in her favor and the letter and mail receipt overruled a possible penalty.

Take advantage of impairment related work expenses. Once a year Stohl has her doctor write, certify and sign a detailed letter describing her disability and health history, then prescribe impairment related work expenses (IRWE), documented expenses that can be deducted from her monthly SGA amount, in Stohl’s case they total $1,331. Although all IRWE’s must be work related, a doctor can prescribe an IRWE “to maintain health to offset effects of a disability in order to be able to work.”

Examples of Stohl’s IRWE’s include wheelchair tires/tubes/maintenance, wheelchair gloves, mileage to work, medical insurance and co-pays, ADA home repair, prescription co-pays and over-the-counter meds, vitamins, adapted therapeutic exercise (swimming, health club, fitness trainer), ADA bathroom repair, spa repair (prescribed water therapy), cell phone, Internet access, podiatry (manicure-pedicure) — to prevent ingrown toenails — and non-covered attendant care. [Note: to be certain that these expenses will be approved, show all this documentation to a benefits worker and ask for a statement that it has been received with no problematic issues, and get a receipt showing the date of your meeting with a worker.]

Treat benefits workers with respect and always follow up with a thank you card. “Benefits workers have a tremendous workload,” she says. “This goes a long way.

“And if all else fails, I cry.”


Dave’s Anecdotal Glossary

Continuing Disability Review: Dave, who has wrestled with the benefits maze since becoming a paraplegic in 1985, received a continuing disability review (CDR) in 2013 requesting his monthly income and expense statements back to 1994! He only had seven years of records so he “averaged” his annual income. Due to the way Dave filled out his CDR, it appeared he had used up his trial work period (TWP) and his SSDI benefits should have terminated in March of 2011. Because of this mistake, he was told he owed Social Security what he had earned since then — $34,500!

Trial Work Period: Dave began searching websites to understand the meaning of TWP and found that you only get one TWP per SSDI claim. This period allows a recipient “to test his ability to work” for nine months (not necessarily consecutive) and still receive SSDI benefits regardless of how high your earnings are during a “rolling 60-month period” (for explanation, see Resources: Cornell University).

Expedited Reinstatement: Dave later learned that he could apply for an expedited reinstatement and get his benefits back the first month he earned less than substantial gainful activity (SGA). This would trigger a new TWP, with some restrictions.

Substantial Gainful Activity: Dave found out that a person is ineligible for SSDI if he engages in SGA. This happens when monthly earnings, less impairment-related work expenses, exceed a certain amount ($1,070 in 2014).

Ticket to Work Program: Dave recently discovered this program, and to his relief he realized that it is a free service that helps people navigate the benefits maze. For example, this is where he learned about impairment related work expenses.

Impairment Related Work Expenses: Dave was happy to learn that he could document disability-related expenses relating to work (medical, equipment, and other expenses) that would lower his SGA. If he had taken advantage of this earlier, he would not have used up his TWP.

Medicaid Buy-In: Dave also discovered that this Medicaid program is available in 42 states and can save substantial money. The program enables people with any type of earned income to purchase Medicaid for a nominal monthly fee. In Dave’s case, since he lived in California, that meant he could purchase Medicaid for $50/month and stay on the program and earn up to $51,228!

Resources:
• Continuing Disability Reviews, Disability Secrets.com: www.disabilitysecrets.com/resources/social-security-disability/ssdi/keeping-benefits-continuing-reviews.htm
• Explanation of Expedited Reinstatement and Trial Work Period, Cornell University: www.edi.cornell.edu/publications/PPBriefs/PP_28.pdf
• IRWE and Unincurred Business Expenses, Disability Secrets.com: www.disabilitysecrets.com/resources/disability/disability-and-social-security/deducting-disab
• PASS Plan: www.socialsecurity.gov/disabilityresearch/wi/pass.htm
• The Red Book: www.ssa.gov/redbook/index.html
• Ticket To Work Program: www.chooseworkttw.net/index.html
• Trail Work Period Amounts per year: www.socialsecurity.gov/oact/cola/twp.html
• Trial Work Period, Disability Secrets.com: www.disabilitysecrets.com/dnewsblog/2010/01/social-security-disability-trial-work.html
• SSI and SSDI Overpayments, Cornell University: http://digitalcommons.ilr.cornell.edu/edicollect/167/
• Substantial Gainful Employment Amounts per year: www.socialsecurity.gov/oact/cola/sga.html
• What to Do When Social Security Says You Received a Disability Overpayment, NOLO Law for All: www.nolo.com/legal-encyclopedia/what-do-when-social-security-says-you-received-disability-overpayment.html


Snapshot: Lonnie Hoover

By Tim Gilmer
Lonnie Hoover, 36, of Grove City, Ohio, was working full time for a carpet cleaning business in 2002 when a car accident paralyzed him at the C5-6 level. He had worked as a shipping supervisor for a distribution warehouse prior to that for five years after graduating from high school.

It took him several years to adjust to his spinal cord injury. “I had a lot of health issues with blood pressure and pressure sores, and it took a long time to get over all that stuff. I kept passing out from low blood pressure and had to have two flap surgeries. I also had a problem with a bile duct in my liver not working right, and that caused digestive problems.”

Hoover’s life did not start to turn around until 2010, when he had a biliary bypass to correct the liver issue. “It took me six months to recuperate at home after that, and then I went to my state’s Voc Rehab department and was sent to four weeks of job training school. They taught me how to do a resume, interviewing skills, some typing. I learned how to use Microsoft Office and other computer stuff.”

The training paid off. One of the first jobs he sent his resume to called back and hired him. Since 2011 he has been a customer service coordinator for Gap, working on online purchases. He works 20-30 hours per week, usually from 5-9 p.m, which allows him to keep his SSDI benefits. He also has a nurse and an aide provided by a home health care waiver thru his Medicaid.

Working has also enabled him to purchase his first home. “I just closed last week on the house, and my home health waiver is helping me put in a roll-in shower and electric door opener,” he says. Does he have any advice for others who may be struggling? “Keep the faith, don’t give up, because there will be a lot of hardships,” he says. “You have to have goals, something to work for. My first goal was just to be able to sit up all day, and my latest goal was to get my own home.”


Snapshot: Erik Corbett

By Tim Gilmer

Like many people with SCI, despite being qualified and available, Erik Corbett cannot find a full-time job.

Like many people with SCI, despite being qualified and available, Erik Corbett cannot find a full-time job.

Erik Corbett, 34, was working as an electrician in Vermont when he was injured in an auto accident in 2000. After two months in rehab as a T7 para, he applied for jobs and tried college, but with little success. But the following year he enrolled at the University of Massachusetts and graduated with a bachelor’s degree in business administration and marketing in 2005.

He worked on and off at various part-time and seasonal jobs while drawing a monthly SSDI check from 2005-2009. His most consistent job was working for Attitash Mountain Resort in New Hampshire. “I headed up an adaptive ski program and worked in the retail shop, thinking I could work up to full time, but no such luck. So I got a small business loan, combined it with savings and bought a fish market.”

The fledgling market’s earnings were below the social security threshold, so he thought he could keep his SSDI. But in 2010 when social security learned he was a sole proprietor, they stopped his checks and billed him for $17,000 in back payments. “I should have walked away from the business then,” he says, “but I wanted to pay off the loan, so we stuck with it.”

He transferred the business to his wife’s name and worked part-time jobs and the seasonal fish market, running up credit card debt  “just to keep the lights on.” After selling off his equipment and giving up on renting the market space, he paid off the business loan, then applied for expedited reinstatement of SSDI and was told he was accepted. But no checks have come for over a year now.  “I figure I’ll start receiving SSDI again once I have accumulated $17,000 and they are paid off. Until then, I have to work part-time jobs. I can’t afford to work full-time.” He says he has applied for at least 25 jobs in the past few years.


Snapshot: Stacie Owen

By Tim Gilmer
Stacie Owen, 49, has a master’s degree in social work, but working full-time is not in the cards. As a quad with one working arm due to a tumor at age 10, she uses a power wheelchair and receives Medicaid and 300 hours of attendant care per month. But it’s not her disability that limits her work.

Stacie Owen“I applied for social work positions at local nonprofits, hospitals and other relevant agencies. I worked with local [Voc Rehab] facilitators, attempted to obtain government contracts, and used other resources and means to gain potential employment. I was repeatedly told about how skilled I am and how I would be a great asset to any organization, but no one would hire me. I finally obtained employment after job seeking for approximately five years.” But not full-time work.

Owen has put together a handful of part-time jobs through persistence and getting to know people in the small community of Ferndale, Wash. She works as an independent living trainer, contracting with COPES, the state’s attendant care program. “I’m working with people like myself, helping people recruit and manage their caregivers, get appropriate housing and so forth,” she says.

“I also work for the Department of Vocational Rehabilitation in assessment and training people to find work.” She helps people volunteer to develop skills, guides them in getting and keeping employment, and acts as an on-call problem solver. “I’m kind of like a life coach,” she says, working with people with disabilities.

Job number three is working with Children’s House International, an adoption agency. “A woman approached me when I was volunteering and asked me if I would read home studies for international adoptions,” she says. As if that isn’t enough, she also works as a consultant and speaker. She has formed her own business so she can manage her income wisely and keep her Medicaid and attendant benefits.

Why wouldn’t someone who can handle all this responsibility be able to handle one full-time position? “I think people have an unconscious fear of people with visible disabilities,” she says. “But if I can volunteer and people get to know me, that overcomes their fear.”