Maximizing Your Benefits

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Maximizing
Your Benefits
By Richard Holicky

Jamie Peterson is a full-time self-employed architect. Bruce Goguen's work often takes him to the state capital. Barbara Knowlen is a successful entrepreneur. Even though they're all working and making money, they continue to maintain and receive valuable Social Security and other benefits--most importantly, health care benefits that may include attendant care. Though the rules can be both confusing and maddening, many find the hassle of figuring them out to be worth it.

SSI and 1619(b)
Peterson, an architectural designer, has been working full-time since 1992. He nets over $24,000 a year and still qualifies for Medicaid under the SSI 1619(b) plan, which protects SSI recipients whose earnings exceed the $12,636 earnings limit (1998 figure).

"In order to maintain my 1619(b) eligibility, I have to keep my earning under a certain level. In Colorado the baseline income limit is $12,636. I add in my Medicaid expenditures of $12,000 a year, which raises my income limit to over $24,000. As long as I'm under that amount, I can stay eligible for Medicaid and attendant care," says Peterson, whose C6-7 injury resulted from a motorcycle accident in 1985, when he was 21.

"You need to document everything. Doing that helps keep me covered and puts the burden on Social Security." --Bruce Goguen

In order to avoid being disqualified, Peterson keeps close track of business expenses and income. Each year he provides his local Social Security office with income tax returns, earning statements and documentation for the cost of his attendant care. "I've been told by more than one SSI tech that I'm the only person they knew of who's using 1619(b), so it's definitely underutilized. It's a complex program to explain and understand."

While SSI programs are administered by individual states, the formula for 1619(b) remains the same: Base Earnings Amount + Average Medicaid Expenses = Income Limit. While the base earnings amount is pretty much the same nationwide, about $13,000, average Medicaid expenses vary widely from state to state. It's much more attractive--and rewarding--to work in some states than others. Take Note: SSI severely limits total individual resources (bank accounts, stocks, etc.)--excluding home and furnishings--to $2,000-$3,000 for a couple.

IRWEs and Employer Subsidies
Goguen says he can make around $2,000 a month while remaining eligible for SSDI and Medicare by taking advantage of two SSDI work incentives: impairment related work expenses (IRWEs) and the employer subsidy program.

Goguen, a quadriplegic with MS, has worked for United Cerebral Palsy of Colorado for the past four years. He sits in on many local and state-level committees addressing issues of access to healthcare, affordable accessible housing, personal attendant services and employment. Working provides the means to pay for his supplies, equipment and other support needs, keeping him independent of the state Medicaid system.

"Anything that allows you to work and is disability-related qualifies as an IRWE," says Goguen. Qualifying expenses include wheelchairs and maintenance, braces and crutches, attendant care services, work vehicle modification, special on-the-job equipment, disability-related drugs and medical services, work-related home modifications, and various medical supplies, such as catheters and leg bags.

You can deduct your cost for these items from your gross income. Goguen managed to get his Rolli-Moden seamless wheelchair pants covered because they're designed to prevent pressure sores. Frog Legs for his chair are also deducted from his gross income. If it's related to work and you can tie it to disability, it qualifies.

Goguen initially submitted monthly expense reports to his local office for approval. Now he does them quarterly. He estimates his IRWEs at between $300 and $500 a month.

"You need to document everything. Initially my local office was somewhat adversarial, but I was persistent and had the information. I always place a disclaimer on the bottom of each statement that reads, 'If these are not IRWEs, please inform me immediately, or I will consider them approved.' Doing that helps keep me covered and puts the burden on Social Security."

"People rarely succeed unless they're doing the type of work they want to do, rather than what the VR counselor thinks they should do." --Barbara Knowlen

Goguen also uses SSA's employer subsidy program, which allows him to increase his earning by 50 percent. Basically the subsidy allows employers to rate the productivity of an employee's work relative to that of nondisabled employees. The percentage is the amount the employer compensates for the employee's disability. In Goguen's case, his employer did a time study to see how long it took him to do various tasks--phone calls, computer work, setting up audio/visuals, getting help with the copy machine, transportation and other things.

SSA then calculated that his employer subsidizes him by 50 percent--because he requires assistance and takes longer to perform various tasks than nondisabled coworkers, his work productivity is rated at 50 percent of that of similar employees. As a result, only half his monthly gross income is counted by SSA. As long as the adjusted income--gross income minus the subsidy and minus the IRWE--stays below $740 a month, Goguen remains eligible for SSDI.

Goguen points out that Social Security has a big stake in getting people back to work; reducing their rolls by one percent will save them many millions annually. He says that SSA is aggressively doing outreach with vocational rehabilitation, independent living centers and other organizations and agencies so that people can better access various work incentive programs.

Vocational Rehabilitation
If you receive SSI/SSDI benefits, you're eligible for vocational rehabilitation services. The key to working with VR is showing how your request will get you back to work. Use a written plan, precisely outlined. Simply saying 'I want a van with a lift' won't cut it.

"The key is having a clear employment goal," offers Laura Hershey, a disability rights activist and writer. "What you've got to say is, 'Here's my employment goal, I need this to reach it.' I know a person who had a degree and got VR to pay for law school. She told them, 'I may have a degree, but I don't have a job. I need this to get one.' That overcame their resistance."

Money for school or training, vehicle modifications, computers or business start-up equipment are all appropriate VR requests. Requesting funds to purchase decent clothes for a job interview is not out of line.

Many people say Knowlen is the person to talk to about dealing with vocational rehabilitation. After all, she's written the book on it--literally. Knowlen's How To Kick Ass and Win is a manual based on her own successful appeal with Kansas VR for a standup wheelchair, first published in 1990.

Knowlen, a T10 para since 1965, was diagnosed with MS 29 years ago. She's been assisting people with disabilities for a long time. In 1990 she and Michael Knowlen founded Barrier Breakers (www.barrierbreakers.com), which provides benefits counseling, assistance, training, and also markets her books, posters and Plan for Achieving Self Support--PASS--kits.

"People are often put off by the attitude they encounter at vocational rehabilitation," says Knowlen from her home office in upstate New York. "There are already enough obstacles to working with a disability. People rarely succeed unless they're doing the type of work they want to do, rather than what the VR counselor thinks they should do."

Because final decisions are often up to the local worker, your relationship with that counselor is crucial. Unless they find fatal flaws with a plan, VR is obligated, under the 1998 amendments to the Rehabilitation Act, to approve it. Be persistent, firm and very assertive. And don't mistake long delays, which are common, for denial of services.

Plan for Achieving Self Support
Knowlen points to the Social Security PASS program as another work incentive program which allows people to work and not lose health care benefits. PASS permits people receiving SSI benefits to set money aside to buy equipment and services they need to go to work or go into business, and still qualify for SSI and Medicaid.

The PASS lists work goals, items required to achieve those goals, the time frame required, and the overall cost. The employment goal is anything which can realistically be accomplished and generate income. The plan allows you to set aside money specifically for training or tuition, a car or van for transportation, a computer or tools and supplies of your trade or business, day care for a child while you work or attend school, adaptive technology, etc. The money set aside is not counted as income, thus allowing people to save money while maintaining health care and other benefits.

"PASS can allow some people to double their available money," Knowlen says. "They can work, save money, have assets, and move toward more meaningful work or starting a business."

Income Ceilings, Assets and Incorporation
One of the biggest hassles of working and maintaining benefits is staying under various income limits, which can be challenging for the self-employed, whose incomes may vary dramatically from month to month, placing important benefits like health insurance at risk.

"Incorporation is a legitimate way ... to develop a sustainable working environment while maintaining [your] benefits." --Steve Rodoletz

Steve Rodoletz, who receives SSDI, Section 8 housing vouchers, Medicare and Medicaid, found the sheer paperwork of reporting to all these agencies every month for five years simply overwhelming. "I was spending a third of my time doing paperwork and reports. The consequence of exceeding earning limits and prematurely losing necessary supports like health care coverage is dangerously real. Some benefits can just stop; others can fluctuate wildly from month to month."

For Rodoletz, who does disability-related consulting and desktop publishing, the answer was forming a corporation. A corporation is a separate entity which receives income, pays taxes, holds assets and pays most expenses--phone, internet, transportation, computer, office space and more. All this is important for people who qualify for SSI because asset limitations are so strict for SSI, food stamps and Section 8 housing. A corporation helps to maintain the distinction between personal and business assets and expenses.

"With a corporation," says Rodoletz, "you only answer to the IRS once a year. Incorporation is a legitimate way to provide some stability and helps draw a line between receivables and profitability, allowing people to develop a sustainable working environment while maintaining their benefits."

Knowlen concurs: "With a sole proprietorship, SSA and county workers have the same right to examine your business account as they do your personal account, and may argue business expenses. Incorporate your business and it becomes a separate legal entity; its assets are not yours. The corporation pays you wages or issues a dividend to you. That's all you need to report to SSA or the county."

But don't view incorporation as a cure-all or a way to eliminate paperwork or documentation. "Self-employment and incorporation require discipline," says Rodoletz. "You can't comingle corporate and personal funds, and you have to keep accurate records."

IRWEs and Employer Subsidies
Keeping Accurate Records Doing the paperwork is vital to maintaining benefits while working. The government and its agencies run on paperwork, and keeping yours organized shouldn't be something left for your spare time.

Most of the people I spoke to had little positive to say about government bureaucracies--endless lines, representatives who don't return calls, inaccurate information. I once had an SSA representative tell me that my benefits had been suspended because I was incarcerated--and I was working 40-plus hours a week at the time!

So what can you do when you keep getting the bureaucratic runaround?

"First of all, if you don't feel you're being treated well, ask to speak to a supervisor or manager," says SSA Employment Support Representative Christopher Johnson. "If you want fast action, make a congressional--as in federal--call. You can always go to a different office. Get something in writing; demand it if necessary. And most of all, keep accurate records."

That last tip seems to be the common thread--the mantra--with everyone I spoke to. The SSA is sort of like the IRS--they can come after you at any time. Your best protection is having documented records of all pertinent information.

Securing accurate information regarding Social Security work incentive programs can be a challenge. Some SSA workers have suggested that explaining these programs is tantamount to career suicide. Don't let that stop you. If you want to get back to work but are afraid of losing health care or other benefits, get the information you need so you can get the paycheck you want.

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