SSDI and the Decision to Return to Work

SSDI & the Decision to
Return to Work

INTRODUCTION

A. Why conduct the study?

1. Background

In the absence of real data, policymakers have of necessity made assumptions about the needs, wants, and work behaviors of persons with disabilities. The original Social Security Disability Insurance (SSDI) legislation made few provisions to encourage persons with disabilities to return to work. There was a presumption of permanence in any condition that would qualify one to receive benefits. Entitlement criteria for determining if a work disability exists were designed to be stringent. The legislation did require "prompt referral to vocational rehabilitation services", but had none of the current financial incentives.

Much has changed since the original Disability Insurance program was established in 1956. Life expectancy is dramatically increased for many people living with previously fatal conditions. In addition to saving lives, technology makes work possible for many who were formerly excluded. Telecommuting allows even those who are home bound to participate in the work force. While improvements are needed, the work place is more accepting of persons with disabilities because of passage of laws like the Rehabilitation Act and amendments, and the Americans with Disabilities Act.

In addition, public attitudes and expectations have changed. Even while recognizing that some people need financial help, recent proposed legislation (e.g., Welfare Reform, etc.) suggests that the public is reluctant to provide permanent support to any segment of its citizens.

Meanwhile, applications for benefits filed by disabled workers have risen 346% nationally since 1960 to almost 1.5 million a year. As of July 1996, 4.3 million disabled workers were collecting Social Security Disability Benefits, an increase of well over 5% per year since 1994.

Yet the research shows that "not more than 1 of every 500 SSDI beneficiaries has left the rolls by returning to work." Ten percent of disability beneficiaries work during their initial period of benefit entitlement. Eighty percent of these beneficiaries do not continue to work. Most of those who leave the SSDI rolls do so through death or attainment of age 65, when automatic transfer to the retirement program occurs.

These data suggest that existing Title II Work Incentives do not, in fact, produce the intended results, i.e.: sustained Substantial Gainful Activity (SGA) leading to termination of SSDI cash benefits. This is true in spite of the fact that the SSDI population has significant work history.

EXECUTIVE SUMMARY

In January of 1995, a study of the return to work decision of Social Security Disability Insurance (SSDI) beneficiaries was undertaken by a task force of consumers and staff of the Massachusetts Rehabilitation Commission. Two hundred and six people who had completed services from the agency in Federal Fiscal Years 1991 and 1992 returned useable surveys.

This study was conducted to investigate the reasons why so few persons who are receiving SSDI return to gainful full-time work and even fewer relinquish benefits. In examining this phenomena, the study revealed these major findings that shed light as to the perceptions and behavior of study respondents:

(1) 85% of respondents who receive SSDI payments still consider themselves disabled;

(2) most individuals want to work and have attempted to work;

(3) factors that predict return to work are distinct from those that predict benefit termination; and,

(4) the consensus of individuals is that a consistent support system, necessary to make a permanent transition away from dependence on cash benefits, is lacking.

More effective policy is needed; the focus must be changed from motivating to supporting people with disabilities to return to work at a level which results in termination of benefits.

FINDINGS

A. OBJECTIVE DATA

1. Work Status

Almost two-thirds of respondents had worked at some time after receiving benefits.
About a third were still working at the time of the survey.
A third had worked, but were no longer working.
Close to 40% had never attempted to return to work.

2. VR Status and Work

Of those currently employed, 80% completed vocational rehabilitation services in Status 26, "Closed, Rehabilitated".

Twice the percentage of respondents who were closed in Status 26 (36%) are currently working as compared to Status 28.

3. Benefit Status

Since 1991, the Substantial Gainful Activity level of $500/month has been less than the national average monthly SSDI benefit.
Eighty percent of the respondents were still getting SSDI cash benefits when they completed the survey.
Twenty-four persons reported that they no longer received SSDI cash benefits because of work efforts which were considered to be Substantial Gainful Activity.
Only one individual reported that SSA determined they were no longer disabled following a medical review.
Length of Time After Entitlement: three quarters of respondents to the survey had been receiving disability benefits for at least 5-10 years; one quarter for between 10 and 33 years.
SSA Defined Medical recovery occurred a tenth as often for the study group as for the national population of disabled workers.

4. Age at Disability Onset

Better than half of the respondent population became disabled as adults between the ages of 22 and 45.
A quarter became disabled after age 45.
People who are born with a disability perceive fewer barriers to employment than those who become disabled after birth.

5. Age and Work

Almost 10% of respondents who were working at the time of this survey were over age 54, even though SSA has a diminished expectation for people of this age returning to work.
If a respondent is over age 54 there is a one in three chance they will attempt to return to work.

B. SUBJECTIVE DATA

1. Health Concerns

Concern about health is an equally important factor whether a person is working or not.
85% report that their disabling condition is a significant factor in their decision to attempt work.
92% of the twenty-four individuals who stopped receiving SSDI because of work activity indicate concerns about their health.
87% express fear that they will not be able to acquire and/or retain health insurance.

2. Expectations of Return to Work

Close to half of all respondents expected they would return to work at the time their SSDI benefits began.
Expecting to return to work and working at the time of the survey appear not to be related.
A third of those who were working had expected to work.
A third of those who were working did not expect to work.
For those under age 45, work efforts far exceeded initial expectations. Even if a person said they did not expect to return to work, there was a 30% chance they would work anyway.

3. Interest in the Study Topic

Peoples' responses showed a high interest in the topic of work and work incentives even though specific incentives were poorly understood.
The response rate to the survey, at 40%, was twice the norm.
One would expect that those whose cases were "closed unsuccessful" (VR Status 28) would be less likely to respond to the survey. It turns out that the response rate was identical to those who were successfully employed at the time of closure (VR Status 26).
Two-thirds took the time to write in responses to the open-ended questions.
40% had multiple responses to at least one of these questions.
Several wrote long letters describing their experience in seeking employment.

4. Understanding the Program

Many respondents do not understand the SSDI program or know the difference between Social Security and the state vocational rehabilitation agency.
Those who do return to, and continue to work, did not have a significant enough understanding of the incentives to influence their decision to pursue and remain at work.
Of all respondents who did not understand the incentives, an unusually high percentage were those who became disabled after age 45.
The most useful of the incentives is the Trial Work Period, in that it is the one that most people understand and use.

CONCLUSION

(1) 85% of respondents who receive SSDI payments still consider themselves disabled;

(2) most individuals want to work and have attempted to work;

(3) factors that predict return to work are distinct from those that predict benefit termination; and,

(4) the consensus of individuals is that a consistent support system, necessary to make a permanent transition away from dependence on cash benefits, is lacking.

Lawmakers presumed that conditions that prevented individuals from working may be temporary as evidenced by Continuing Disability Reviews. This hypothesis is not supported. Just the opposite of this presumption is borne out by this study; namely, 175 of 206 respondents considered their continuing disabilities to be barriers to employment.

The emphasis of past policy and research has been on motivating people to work as reflected in the so-called Work Incentive Program. Sixty percent of the study population had some work activity after benefits began. The issues that people face in relinquishing benefits are complex, and are about anything BUT motivation.

A person's efforts to return to work are part of an evolving process. Analysis indicates that work attempts are predicted by a unique set of dependent elements which are distinct from the factors that influence benefit termination.

The focus must be changed to support individuals, rather than motivating them, in all aspects of their return to work. Many did not consider the V.R. training and types of jobs offered to be commensurate with their prior employment experience. More importantly, salaries of these jobs were insufficient for disabled persons to meet their most basic financial obligations. Further, concerns about continuing health care access, and other assistance currently contingent upon SSA disability entitlement, create real obstacles. Although SSA has no jurisdiction over these adjunct services, without a transitional mechanism, relinquishing benefits remains unfeasible.

The bottom line is: Policy must address these specific issues to increase the number of persons with disabilities who return to full-time gainful employment and relinquish cash benefits. A major shift in the philosophy of disability work policy is required to recognize and more effectively and efficiently meet the needs of disabled workers as they attempt to re-enter the work force.

RECOMMENDATIONS

There are upwards of 4.3 million persons receiving SSDI benefits nationally, and this number is growing by well over 5% per year. Apparently, policy designed to change that fact has fallen short of society's expectations. Widespread consensus exists across the spectrum that this is an issue of national priority. This study has demonstrated that motivation to work already is present among disabled workers. Policy initiatives need to address the constellation of issues that could impede work activity, and consider the separate issues that may keep people in dependent beneficiary status.

Recommendations of the study group are presented by degree to which a system change is called for. First, Section A, "Paradigm Shift: Rethink Disability Work Policy" considers a different policy model altogether and necessary steps toward that end. Given that these global changes will take time to implement, Section B, "Changes and Additions to the Existing Program" addresses areas of immediate and more concrete concern. Section C "Further Study" provides the basis for gaining further insight into the nature of the population and the problems faced, and underscores specific areas that warrant further study.

Finally, we recap the Respondents' Recommendations in Section D.

A. A PARADIGM SHIFT - - RETHINK DISABILITY WORK POLICY:

Consider the impact and ramifications of labeling people "disabled".
Become door openers instead of being gatekeepers.
Focus on enhancing supports rather than motivating disabled workers.
Include SSDI beneficiaries in all stages of policy development to encourage return to work.
Examine and revise the underlying assumptions inherent in current disability policy.
Devise a system that emphasizes creating broad opportunities for returning to work.
Encourage more people to attempt to work by simplifying the rules.
The question of ability to relinquish benefits is too often approached as a matter of work ethics, benefit dependency, or motivation. The fears that prevent people from making this leap are very real.

B. CHANGES AND ADDITIONS TO THE EXISTING PROGRAM

Congress should write and pass legislation implementing national health insurance, without pre- existing condition exclusions, for all citizens, with no ties to employment or disability status.
Find a way to reframe the process of applying for disability benefits to encourage persons with disabilities to continue to expect to return to work in the future.
Devise a fair system of time limiting benefits so that people would know at the outset that benefits were meant to be a temporary bridge.
Separate the benefits. Work out some cooperative and incremental system of integrated services. If disabled workers succeed at work, key benefits could continue without disruption to the worker's stability.
Raise SGA and index it so that it will rise as the cost of living rises.
At a minimum SGA should be at or above the poverty level and no less than the average monthly benefit.
Alternatively, a personalized SGA could be calculated/scaled to the individual's benefit amount.
Place responsibility for implementing the existing work incentives in the hands of specialists in the process.
Simplify the process.
Provide effective education to persons with disabilities, employers, service providers and policy makers, about existing policy, work incentives, the whole disability insurance program, and other supports necessary for successful employment.
Involve more consumers in the process of educating peers and counselors.
Apply the return to work rules from Sec. 1619a in the SSI program to the SSDI program. The Work Incentive and Self-Sufficiency Act of 1996 filed by Sen. Jeffords of Vermont is an example of a current initiative to accomplish this result.
Disseminate first-person information about how people with disabilities manage to maintain employment.
Ensure there is no age discrimination in implementation of all work and vocational rehabilitation related policies.

C. FURTHER STUDY

Conduct further research to better understand what supports will help individuals with disabilities relinquish benefits.
Investigate ways to increase study participation by persons who have successfully returned to work.
Investigate attitudinal differences between those who are and are not willing to relinquish benefits.
Investigate whether there are significant demographic differences between those who return to work and leave benefits and those continuing on benefits in:
1. disability type presence of multiple disabling conditions
2. length of time disabled
3. length of time not working
4. age at disability onset
5. current age
6. pre-disability occupation, duration, including economic sector, job title, salary/wage, schedule and number of hours worked
7. education level
8. post-disability employment, including economic sector, job title, salary/wage, schedule and number of hours worked
9. household composition
10. benefit level
11. other sources of household income
12. income level
13. self-employment status
14. health insurance coverage and carrier

Identify more accurate ways to measure actual capacity to work.
Collect more information from those over age 45.
Design a study to evaluate:
1. the effectiveness of vocational rehabilitation services - including the public sector, the private sector, and a control group getting no VR services.
2. The use of different incentive parameters for different disabilities, such as, stabilized disabilities like orthopedic injuries, versus variable ones like schizophrenia, autoimmune illnesses, and chronic fatigue syndrome (e.g., variable trial work periods).

D. RESPONDENTS' RECOMMENDATIONS

Respondents offered the following thoughts on how they would design effective work incentives:

There should be personal meetings, both at home and the office.
We need options explained in detail.
Local SSA offices need to know what's going on at the main office. Quarterly updates are needed. Then, if someone is still receiving benefits that shouldn't be, follow-up can be done.
Leave things alone. You have programs to help make life better for disabled people. They get into your programs and then powers that be pull the rug out from under them.
Introduce two or three people with similar circumstances [so they can support each other].
Give self-employed people small business loans at a low interest rate to build their business up.
More energy should be directed towards the vocational rehabilitation and employment of a client.
One should not be told "it is easier to pay you (SSDI) than it is to find you a job."
I won't work if I'm going to lose my SSDI.
Familiarize yourselves with working environments encountered by people trying to return to work. Study abuses in the work place.
Attempt to get feedback on how the worker thinks about his employment.
People that are trying to help don't realize the handicaps you face, or don't stop to think how they may prevent you from doing a certain task.
There is much information available. But I have no one to explain, and I can't understand, due to a stroke.
Re: complexity...As a mentally ill person, if I work for a year and am taken off disability and no longer considered mentally ill, I will lose housing and then get thrown back into the awful situation that helped to get me here: high rents, moving, etc.
If you're disabled, and your health gets better its a good start, but if you're too sick to work, what can you do!
In general, I found the SSA to be very helpful but very impersonal. Cases should be reviewed on individual basis instead of following extremely tight and specific rules for every case. Getting disabled people back to work as productive tax paying citizens with acceptable enjoyable positions should be more important than pushing them into low paying aggravating jobs as fast as possible.
Provide sensitivity training/awareness for employers, both private and government, regarding disability and ADA realities to correct myths and fears.

We are very grateful for the sustained interest and investment of Commissioner Elmer Bartels in this subject, and for the funding through the Office of Consumer Involvement, directed by Emeka Nwokeji.

Judith Poole, member of MRC's Rehabilitation Advisory Council from 1987-1995 and a former policy researcher, was the Principle Investigator for this study.

For information on Judith's background in working with persons with disabilities, click here.

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