PASS Hits a Wall
By Laura Hershey

But after that initial approval in 1994, the Social Security Administration reversed itself so many times that, by 1996, when Laibson expected to have reached his goal, he found himself in worse financial shape than when he'd started.

The PASS program was designed to offer hope to people who wanted to break free of Social Security income restrictions, decrease their dependence on disability benefits and become productive workers. But Laibson, who has multiple disabilities including a brain injury, says that SSA seemed to want him to fail.

At one review, Laibson was found to be out of compliance because he was allegedly attending college full time instead of pursuing his vocation. In fact, he was only taking a few correspondence courses. Another time, he was ordered to produce a business plan and given one day to comply. Then there was this Catch-22: "I had five clients all ready to start with me," says Laibson. "Then they pulled my PASS and I didn't have any money to operate. So I lost those clients. They said that since I already had clients, I didn't need a PASS."

The stress exacerbated Laibson's disabilities, strained his marriage to the breaking point and devastated him financially. Then, when SSA stopped Laibson's monthly checks with no notice, he attempted suicide. But the crisis has also made Laibson a strong activist and effective protester. He, like many others, is furious that PASS has become such a black hole for disabled people who want to work.

An Empowering Idea The PASS program was created during the early '70s after disabled advocates convinced Congress that too many potential workers were held captive to the disability benefits system. The problem hasn't gone away; in 1998, SSA income restrictions still keep most disabled people out of the workplace. According to polls, most people with disabilities want to work, but fear the loss of benefits--not just cash payments, but health care insurance and personal assistance services--too much to make the leap.

Congress has attempted to help. In addition to PASS, a provision called a Trial Work Period allows SSDI beneficiaries to work for nine months before losing their benefits. For Social Security Income recipients, regulation 1619(a) allows new workers to receive SSI payments, without reapplying, any time their earned income drops below the SSI limit. Regulation 1619(b) lets Medicaid consumers keep their coverage after they begin working if they're unable to work without the services provided by Medicaid. Using these programs, some people have been able to take jobs or start businesses without incurring the usual penalties.

Potentially the most empowering of the existing programs, a PASS allows setting aside income to pay for expenses related to an occupational goal. Expenditures may include equipment ("special" or not), supplies, training, college tuition or transportation. The PASS funds are then "sheltered," meaning they're not counted in determining eligibility for SSI and Medicaid.

When a PASS works as intended, it offers real opportunity. Before Barb Knowlen of Minneapolis learned about the program, she had struggled for several years to launch Barrier Breakers, a business providing advocacy services and products to the disability community. But with a PASS, she was finally able to make her business thrive. These days, Medicaid under regulation 1619(b) is the only public benefit she receives. She has written 150 PASS plans since January 1994, and developed a "PASS Kit" to help consumers utilize PASS programs. She boasts that 17 of her clients are now making more than $20,000 a year and have left SSDI behind.

Knowlen says cooperation of SSA staff in her region has been key to her success. "They are all committed to the idea of the PASS," she says. "They want to see it work." But this commitment appears to be an aberration within the agency. For many PASS users, the program has become a nightmare of ever-changing regulations, hostile claims representatives, arbitrary decisions and reversals, harassment and financial risk.

The Rise and Fall of PASS No one reason explains why the extraordinary potential of PASS has never been fully realized. It's true that too few SSA employees understand the program, or have even heard of it. But people with disabilities aren't any better informed. The blame belongs not only with SSA, but also with disability organizations. According to Tom Emmons, an advocate in Denver, most of these groups find it easier to allow their clients to assume there is no way out of the "benefits trap" than to ease them through the daunting red tape. Worse, some state-funded agencies have attempted to monopolize vocational services by withholding information about PASS, which offers an independent, consumer-controlled funding source for these services.

In spite of these problems, PASS was a secret too good to keep. Successful applicants spread the word that the benefits trap was indeed escapable, and a few knowledgeable people with disabilities set up shop helping others prepare and submit PASSes. These self-employed, community-based experts have proved to be prime resources for Social Security beneficiaries who want to work.

As a result of this grass-roots activity, 10,000 PASSes were in effect in December 1995. (But keep in mind that this total is still infinitesimal, since the number of working-age SSI recipients--those most likely to benefit from PASS participation--tops 3 million.) California and Colorado, two states with very active disability communities, posted the highest rates of PASS use with 1,571 and 645, respectively.

One year later, however, the number of active PASSes had plummeted below 5,000. By December 1997, it was less than 2,500; 384 in California, 82 in Colorado.

Why the dramatic decline? SSA cut the legs out from under the PASS program, largely motivated by a 1995 report issued by the General Accounting Office. GAO criticized SSA for sloppy PASS administration, and for returning too few PASS users to the workplace. Although many of the findings were valid, the report was flawed by a complete absence of consumer perspective. Dozens of SSA employees and service providers were interviewed for the study, but not one current or former PASS user.

The report, its faults notwithstanding, struck a nerve at SSA. Without warning, then-commissioner Shirley Chater shut down the PASS program for three months. During this moratorium, SSA officials in Baltimore re-wrote key PASS policies. Ignoring accepted procedures for drafting federal rules, they neither published proposed changes nor invited public comment.

According to Bryan MacDonald, a benefits counselor at the Oakland/Berkeley (Calif.) Center for Independent Living, they acted "completely outside the regulatory process, much less the legislative process."

Restrictions and Reprisals PASS administrators defended their unilateral decisions by insisting the changed rules are not regulations, but rather POMS--Program Operations Manual System guidelines for employees--and therefore exempt from customary rule-making procedures.

The new rules punished PASS users and applicants for SSA's mistakes by imposing harsh restrictions. Using PASS funds for installment payments was prohibited, which effectively made it impossible for many users to purchase vehicles or computers on credit. This change ruled out employment for some and delayed it for years for others.

PASS users could now be penalized for tiny accounting errors. "People were told that if they were one penny off, they would be out of compliance for every dollar of SSI they had ever received," says Doug Brunkow, a former PASS preparer in Denver. This contravenes the original PASS guidelines, which tolerate errors up to $500 in PASS users' income/expenditure reports.

PASS applicants were told they could seek only "entry-level" positions--a truly bizarre notion for people whose living expenses are likely to overwhelm even a middle-class income. Many advocates see this restriction as a perfect illustration of SSA's biases about people with disabilities: They don't want beneficiaries to aim too high, to get too uppity.

If the new rules seemed designed to ensure failure, so do the attitudes of some SSA employees. "Ninety percent of the people I wrote plans for were discouraged by SSA in one way or another," says Brunkow.

Applicants often have to meet with SSA field-office staff to get their PASS plans approved. After approval, participants can be called in at any time for compliance reviews that frequently become adversarial confrontations, according to PASS preparer Debbie Dase of Cincinnati. Dase cites one client who was repeatedly told she had to prepare for employment in an office setting. Because she has a facial disfigurement and feels uncomfortable around strangers, she wanted to work at home. "During the meetings with SSA," Dase recalls, "staffers would badger her until she would cry, really cry. They seemed to enjoy the frustration of our consumers."

Brunkow says the poor treatment stems from a basic prejudice. "They have this idea that the people they help, and work for, are second-class citizens." Staffers, he says, seem to believe recipients can't succeed in employment, or are interested only in "stealing from the government."

Knowlen agrees. While the bureaucracy generally treats elderly Social Security recipients with respect, she says, younger disabled people are perceived with distrust and hostility. Those attempting to return to work are even more suspect. "The attitude is that the retirees are getting what they deserve because of their years of hard work," says Knowlen. "But people who are disabled are rooking the system and people using a PASS are rooking it doubly.

"It's an inbred culture in Social Security," she adds. "Disability beneficiaries are viewed as con artists."

Knowlen and Brunkow have no problem with holding beneficiaries accountable for following the plans they submit. But both say SSA's exactitude goes too far. The result has been a return to lifelong dependency on Social Security for people who were sincerely motivated to work and pay their own way.

Brunkow himself is an example. Using a PASS, Brunkow started his own business writing PASSes for others. He specialized in people who had had organ transplants, "so they could not only get that catastrophic health care they needed, but could also get back to work."

Brunkow then applied for a one-year extension of his PASS. He was denied, then SSA charged him with overpayments of both SSI and SSDI--despite the fact that he had passed every compliance review with ease. An SSA staffer re-examined old reviews, he says, "and determined that they were all out of whack." Hence, one of Brunkow's major criticisms of SSA's administration of the PASS program: "No decision is final."

Dase, echoing Brunkow's experience, used a PASS to start AdvoConn Inc., which helps people with disabilities navigate the SSA work-incentive maze. At a review about a year ago, Dase was informed that everything was fine. Six months later, she was called in to rehash the same information. The last review, she was now told, had not been "in-depth enough." Staffers went all the way back to 1988, and determined that Dase had used up her Trial Work Period and was ineligible for benefits. They demanded repayment of benefits she had received for almost 10 years.

"This is punishment for being a PASS advocate," says Dase, who is appealing the determination.

Ripe for Remedies Dase, Brunkow and other current and former PASS users have formed the PASS Participants' Rights Campaign. Since early 1997, PPRC members have staged protests at SSA offices in several cities, including Denver and Cincinnati.

The demonstrations have drawn attention at SSA, and even won a few concessions. The "entry-level" restriction has been dropped, as has the ban on installment payments, and SSA says it wants to improve communication between PASS users and their PASS "specialists" within each region.

Brunkow sees this as a positive step, but says it remains to be seen how--or if--SSA will repair the damage it has done. He adds that PASS denials have caused untold harm to people's credit ratings and benefits status, and thousands are faced with demands to repay huge "overpayments."

SSA does plan to send notices to people whose PASSes were denied or terminated after March 1996, informing them that the rules have changed--yet again--and that they may apply for a new PASS. Indications are that it won't commit to much more without pressure. At a recent meeting, SSA deputy commissioner Carolyn Colvin responded to advocates' concerns by asking them "not to dwell on the past."

"If people with disabilities continue their strong advocacy for change, Congress will hear them and respond." The needed pressure is building. Once a specialized field dominated by disability policy wonks, Social Security reform is fast becoming a central issue within the disability rights movement. National disability organizations have issued calls for more empowering programs to remove systemic barriers to work. Congressional leaders have drafted legislation guided by the advice of disability advocates. An increasingly active disability community is prepared to scrutinize any new proposals to ensure that they give us more control over our lives, not less.

Optimism has been expressed by Susan Daniels, an associate commissioner of SSA who has a disability herself, as well as a background in the disability rights movement. "If people with disabilities continue their strong advocacy for change," she says, "Congress will hear them and respond."

In Washington, according to advocate Bryan MacDonald, the climate is increasingly positive. "The Social Security Trust Fund is solvent until 2029," he says. "The stability of the system will never be better than it is today."

But like most good ideas these days, work-incentive reform will survive congressional debate only if lawmakers can be convinced it's affordable. The decisive test for these proposals will be their "budget neutrality"--that is, a zero impact on the federal budget. Current estimates by the Congressional Budget Office don't look that good, but many advocates point out that the CBO figures are incomplete. They don't take into account the manifest reality that people who live on earned income, rather than on Social Security, are less likely to need food stamps, subsidized housing and other secondary benefits.

They're more likely to pay taxes, stay healthy and contribute to community projects.

The discussion is likely to be influenced by dry statistics. There are 6.3 million SSI and SSDI beneficiaries of working age, yet fewer than one in 500 SSDI recipients terminate their benefits by returning to work. If that figure increases to one in 100, the GAO estimates, taxpayers will save about $2.9 billion over those workers' lifetimes.

Ultimately, Daniels says, change will depend upon revising the traditional notion of disability to coincide with the disability community's self-definition--which specifically includes, not excludes, the ability to work.

For successful change to occur, says Daniels, "we will all need to think long and hard about how to create opportunity and, at the same time, protect needed income supports for people who have significant work impairments."

Is PASS Enough? Even a Plan to Achieve Self-Support may not enable some people with disabilities to work. Kevin Williams, a quad who lives in Denver, used a PASS to pay for van maintenance, computer peripherals and textbooks while he was attending college and then law school. He passed the bar a year ago and began considering a career.

"I looked at starting salaries for attorneys just out of law school," he says. "They averaged around $40,000 a year. I thought, 'Hell, I'd be stupid to work for less than $65,000 if it means losing my benefits.'"

Williams figures his attendant services alone would cost him $20,000 a year if he had to foot the bill himself. He briefly explored the possibility of obtaining continued Medicaid coverage under Rule 1619(b), but found few reliable answers to his questions.

So, for now, Williams has chosen a different career path. He provides legal services to the Colorado Cross-Disability Coalition, a statewide advocacy organization. The Coalition pays his office expenses, but no salary--yet. Williams hopes that successful ADA lawsuits will soon reimburse attorneys' fees.

"As we start bringing revenue into the organization," he says, "I could be paid. I hope that by then there will be some mechanism in place that will let me buy into Medicaid."

Who's Scamming? The suspicion that people with disabilities use PASS plans to buy fancy cars or computers, with no real intention of eventual employment, poisons the Social Security Administration from top to bottom, according to PASS preparers. They say that it shapes daily interactions between SSA staff and PASS users, and influences policy development. To this day, SSA officials defend their imposition of restrictive PASS rules--and the denial or termination of so many PASS plans--by charging that the program is riddled with abuse.

But much abuse, according to PASS preparer Barb Knowlen, is committed by those who claim to help people with disabilities. She cites a common scam perpetrated by sheltered workshops in cahoots with clients' representative payees: Workshop supervisors write PASSes, unbeknown to the recipient/worker, to pay themselves for extra job coaching.

"I wrote up a PASS for a person in that situation," Knowlen says. "He needed a scooter, work-appropriate clothing and some dental work. Then we found out he was already on a PASS, and it was one of those sheltered workshop deals. They wrote a PASS that took $350 out of his $371 SSDI check, and paid themselves for seven hours a month of job coaching. The county social worker was the rep payee, and it had never occurred to her, or to any of these nice professionals, that it was wrong!" The recipient, according to Knowlen, had no idea that he had a PASS in effect.

This story has a happy ending. Her client's new PASS was approved, the old one terminated, and he bought what he needed. "After he got the new scooter," Knowlen says, "he went to the VA hospital and got a job there--20 hours a week, $7.50 an hour--delivering mail. He got out of the sheltered workshop, and he got that job himself. He even got a raise a few months ago."

Not everyone was happy about her client's success. "Those assholes at the sheltered workshop called up the VA supervisor to tell him about all of the guy's deficits," Knowlen says. "The new boss said, 'I'm sorry, it hasn't been a problem.'"

Pending Legislation Two bills are expected to be introduced in Congress this spring: In the Senate: "The Work Incentives Improvement Act of 1998," sponsored by Sen. Edward M. Kennedy, D-Mass., and Sen. Jim Jeffords, R-Vt.

The Kennedy-Jeffords bill, as currently drafted, revises methods for counting earnings and extends health care coverage after employment.

Highlights:

… A 2-for-1 dollar offset formula for the cash benefits check for people who work and receive SSDI, similar to the existing 1619(a) and (b) programs in SSI. This formula would replace the SSDI "earnings cliff"--whereby a monthly income of $500 jeopardizes a recipient's eligibility--with a gradual reduction in cash benefits proportional to earned income. The draft legislation authorizes this innovation in only 10 demonstration projects. … A stipulation that employment will not trigger a continuing disability review (CDR). … A provision to allow transportation costs--including the purchase of a vehicle--as Impairment Related Work Expenses (IRWEs) for all disability groups. … Provisions for affordable long-term Medicare buy-in for people who reach certain income thresholds, and for affordable long-term Medicaid buy-in for people who receive SSDI and work, or receive SSI and earn income in excess of current 1619(b) income limits.

In the House: "The Transition to Work Act," introduced by Rep. Barbara Kennelly, D-Conn., with Rep. Jim Bunning, R-Ky., as co-sponsor. The bill increases consumer choice in rehabilitation providers.

Highlights: … A plan to give beneficiaries responsibility for choosing among providers of employment services, both public and private. … "Tickets to Work Opportunity" (TWO), which would earn reimbursement for providers when their disabled clients attain vocational milestones such as completion of job training, job placement and maintaining employment for certain periods of time.

At the state level: Initiatives are under discussion or being implemented in California, Colorado, Idaho, South Carolina and Vermont. Most address earned-income thresholds and health insurance.