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Social Security Update: SSA Issues Regulations On Substantial Gainful Activity; NAMI Submits Testimony To Congress On SSA's Letters To Consumers And Families

For Immediate Release, October 16, 2000
Contact: Chris Marshall

Over the past decade, NAMI has been strongly advocating for reform in Social Security Administration (SSA) policies to remove barriers to employment and recovery in SSA's work incentive programs for people disabled by severe mental illnesses. There has been progress in this arena in recent years including a long-awaited increase in the Substantial Gainful Activity (SGA) level and passage of the Ticket to Work and Work Incentives Improvement Act (TWWIA) in 1999. Taken together, these changes begin the process of allowing consumers on SSI and SSDI to earn more without losing benefits and to keep their health care coverage under Medicare and Medicaid when they go to work. In NAMI's view, going on to SSI and SSDI should not result in a life of poverty and dependence - no one should ever have to choose between a job and health care coverage for the treatment they need.

NAMI Comments New Proposed Rules for SGA Limits

On August 11, SSA issued a Notice of Proposed Rulemaking (NPRM), 65 Fed. Reg. 49208 (Aug. 11, 2000), for annual indexing of the SGA limit to average wage growth. This NPRM also a) eliminates the "secondary" SGA amount, b) increases the monthly amount for trial work period "services" to $530 (with annual indexing of that amount to average wage growth), and c) increases the SSI student income exclusion to $1290 per month ($5200 per year) with annual increases based on the SSI annual cost-of-living adjustment. Below are NAMI comments endorsing the proposed changes to the disability programs and calling for a realistic increase in SGA that truly reflects the ability to work. The text of SSA's NPRM can be accessed online at

More information on SGA and its relationship to work and independence for persons with severe mental illness on SSA's disability programs can be found at:

NAMI Testimony on "Longstanding Problems in SSA's Letters to the Public"

On September 26, 2000, NAMI Board member Gerald Tarutis, J.D., provided testimony to the Subcommittee on Social Security of the House Ways and Means Committee on problems with Social Security's letters to beneficiaries with disabilities, including those disabled by severe mental illnesses. NAMI consumer and family members have long been frustrated by the inability to comprehend incomplete letters from SSA regarding a beneficiary's disability status. In fact, a recent study of SSA letters by the General Accounting Office (GAO) found that 80% of sampled letters were described as unclear, principally because the cover sheet failed to disclose all of the decisions contained in the attachments. The NAMI testimony, also below, calls for Congress to direct the SSA Commissioner to put in place a comprehensive plan to improve SSI benefit award and adjustment letters, that includes performance measures that hold SSA accountable, with specific timetables and outcomes to assess progress.

October 6, 2000

The Honorable Kenneth S. Apfel
Social Security Administration
P. O. Box 17703
Baltimore, MD 21235-7703

Re: Comments to Notice of Proposed Rulemaking, 65 Fed. Reg. 49208 (Aug. 11, 2000) SGA Amounts; Monthly Amounts for Trial Work Period "Services"; Student Earned Income Exclusion

Dear Commissioner Apfel:

On behalf of the 220,000 members and 1,200 affiliates of the National Alliance for the Mentally Ill (NAMI), I am pleased to offer comments on the Social Security Administration's Notice of Proposed Rulemaking (NPRM), 65 Fed. Reg. 49208 (Aug. 11, 2000), regarding substantial gainful activity (SGA) amounts; monthly amounts for trial work period "services"; and SSI student earned income exclusion. As the nation's largest organization representing persons with severe mental illnesses and their families, NAMI is pleased that the Social Security Administration (SSA) is moving forward on these long overdue reforms.

Specifically, NAMI would like to offer our endorsement to SSA's proposals to:

  • Annually index the SGA amount to average wage growth;
  • Eliminate the "secondary" SGA amount;
  • Increase the monthly amount for trial work period "services" to $530 and to annually index that amount to average wage growth; and
  • Increase the SSI student income exclusion to $1290 per month and to $5200 per year with annual increases based on the SSI annual cost-of-living adjustment.

As you know, in response to a 1999 Notice of Proposed Rulemaking to increase the SGA amount, which requested comments on additional items, NAMI recommended, among other things, indexing the SGA amount to average wage growth, rather than the once-per-decade effort by SSA to increase the level. The prior increases, because they were made infrequently rather than annually, served to increase insecurity and instability in the work lives of those people with severe disabilities who were trying to work.

NAMI believes that the changes proposed in the NPRM are vitally important to the interests of individuals with severe mental illnesses who rely on Social Security's disability programs. NAMI therefore urges SSA to move as quickly as possible to publish these regulations as final.

In addition to supporting quick action on these rules, NAMI would also like to take note of additional issues raised in the NPRM that we believe will affect the ability of persons with severe mental illness to enter (or stay in) the workforce. As a member of the Consortium for Citizens With Disabilities (CCD), NAMI shares the views of our colleague disability organizations on the need to ensure that the current system for tracking earnings is simplified for beneficiaries. NAMI therefore urges SSA to address several additional issues.

1. Improve documentation of earnings

SSA's procedures, or lack thereof, are totally inadequate at tracking income and earnings. This deficiency will become even more apparent as people take advantage of the recently enacted work incentives legislation. For example, overpayments to beneficiaries who work have always been problematic. However, they promise to become catastrophic if left unresolved. Despite efforts to implement the new Ticket To Work and Work Incentives Improvement Act (TWWIIA), it appears that SSA has not placed the same priority on improving its procedures to document earnings. NAMI urges SSA to address this issue, which is critical to the full and successful implementation of TWWIIA.

2. There should be one SGA level for all SSDI beneficiaries.

The current SGA limit for SSDI beneficiaries who are not blind is $700 per month, an amount that does not even permit an individual to work a full-time job at minimum wage. In fact, this amount places the individual just about at the federal poverty level. Nevertheless, earning even $1 over this level can cause the beneficiary to completely lose eligibility for cash assistance. In addition, most, if not all workers with disabilities incur substantial expenses in attempting to work. As a result, far fewer beneficiaries attempt work than would do so under a more reasonable, rational policy.

NAMI believes that a more realistic SGA level is $1170 per month; i.e., the current SGA level for people who are blind. This amount is about 67 percent greater than the current level of $700 for people with disabilities who are not blind. The higher amount allows the individual to earn minimum wage at a full-time job, and is a much better indicator of ability to work and a greater incentive to attempt work.

3. Match the trial work period month "service" amount to the SGA level.

SSDI beneficiaries who are aware of the SGA amount are typically unaware of the separate trial work period (TWP) amount and often use up a month of the 9-month TWP before they even begin to test their ability to work. While the proposed increase to $530, with annual indexing, is a major improvement over the current fixed amount of $200. This separate level of earnings causes confusion and unnecessarily adds to the complexity of the program. NAMI recommends increasing the TWP service month amount to match the SGA amount. In the alternative, NAMI would also recommend allowing the TWP amount to be reduced in the same way as the SGA amount by subsidized employment and impairment-related work expenses.

Thank you for your attention to these important issues for people with severe mental illnesses and their families.


Laurie M. Flynn
Executive Director





SEPTEMBER 26, 2000

Chairman Shaw, Representative Matsui and members of the Social Security Subcommittee, I am Gerald R. Tarutis of Seattle, Washington. In addition to serving on the Board of the National Alliance for the Mentally Ill (NAMI), I am also an attorney in private practice. I am pleased to have the opportunity to share NAMI's views regarding ongoing problems with the Social Security Administration's letters to beneficiaries with disabilities and their families.

In over 25 years of practicing law, I have represented many clients with severe disabilities who have been claimants for Social Security cash benefits. While some of my clients' cases before Social Security were dealt with in a fair and straightforward manner, many others found the experience of endless appeals, examinations and bureaucratic delays frustrating and in many cases, humiliating. This is especially true for adults with severe mental illnesses and other disabilities that are not readily apparent to the staff of the Social Security Administration (SSA) field offices.

Too many adults with severe mental illnesses, and their families, find their dealings with the SSA on matters ranging from appeals for denial of eligibility, to reporting wages, to seeking a straight answer regarding an alleged overpayment to be intimidating. Nowhere is this process more frustrating than in trying to interpret and understand the letters that claimants and beneficiaries receive from the agency. It would be difficult for me to overstate the confusion and aggravation that NAMI members feel when they receive important correspondence from SSA regarding eligibility, benefit adjustments and overpayments with conflicting and confusing information.

For adults with serious brain disorders - including schizophrenia, manic-depression, major depression and severe anxiety disorders - both SSI and SSDI serve as a critical federal safety-net program that is essential to meeting the most basic needs for food, clothing and shelter. In NAMI's view, it is critically important that these most vulnerable Americans, and their families, get clear information from SSA about eligibility and benefits. The receipt of confusing or conflicting information about eligibility and benefits can have disastrous consequences - particularly for individuals who work part-time under SSA's limited employment programs, i.e. 1619 for SSI beneficiaries and the trial work period (TWP) for SSDI beneficiaries. As these programs expand under the Ticket to Work and Work Incentives Improvement Act (P.L. 106-170), it will be all the more important for beneficiaries to get clear and precise information from SSA about where they stand.

In fact, TWWIIA itself points to the frustration that individuals with disabilities have had over the years with SSA's letters. As an aside, NAMI would like to again thank you Chairman Shaw, and all the members of this Subcommittee on both sides of the aisle, for your leadership in passing this historic legislation to help adults with severe mental illnesses and other disabilities go to work. As you know, Congress included a provision in TWWIIA authorizing a new "benefits counseling and assistance" program to assist beneficiaries in their decisions regarding employment. What is most noteworthy about this initiative is that Congress insisted that these benefits planning programs be independent of SSA - largely because of the low level of confidence among beneficiaries and their families about the accuracy of the information they receive from Social Security. While some of this may be caused by past histories of overpayments (which too often results from confusing or out of date information given by SSA field office staff), it is surely also a result of confusing and difficult to understand letters from SSA itself.

An examination of the General Accounting Office's (GAO) recent report on SSA's longstanding problems with its letters to the public illuminates why beneficiaries and their families are so frustrated. GAO reviewed several categories of letters, including those awarding and adjusting SSI benefits. In analyzing these letters, NAMI understands that the GAO used a team of writing consultants (including English teachers) to assess whether the letters communicated clearly and to verify the types of problems that regularly occur with these letters.

The GAO's findings are remarkable. The majority of the letters in every category (including SSI eligibility and adjustments) did not clearly communicate on at least one of the following: 1) SSA's actual decision on the claimant's action, 2) the basis for SSA's decision, 3) the financial recourse of SSA's decision on the beneficiary, or 4) the recourse available to the beneficiary. Among the factors noted by GAO and their consultants were illogically sequenced information, incomplete or missing information, contradictory information and confusing numerical information.

The GAO report notes that:

- An unclear explanation of the basis for SSA's decision was the most widespread problem cited by the GAO, i.e. 80% of sampled letters were described as unclear, principally because the cover sheet failed to disclose all of the decisions contained in the attachments.

- 100% of the sampled SSI award letters do not explain the relationship between program rules and the amount of the actual SSI benefit (86% of SSI benefit adjustment letters failed to explain this as well).

- More than half of the surveyed SSI benefit adjustment letters lacked a clear statement of timing or the amount of change in benefits.

- Letters sent to SSI beneficiaries who are eligible for a previous, but not a future, month's benefit, were unclear in communicating all of the criteria.

- A startling 95% of award letters for Social Security benefits (including those to SSDI claimants) fail to detail how to appeal the decision.

In its report, GAO noted that while SSA acknowledges many of these problems, changes have been slow in coming. Both GAO and SSA appear to acknowledge that comprehensive revision of the language used in beneficiary letters is needed, as well as an overhaul of the computer software used to generate these letters. NAMI is hopeful that this process will be accelerated as a result of a 1999 federal court order for SSA to develop a comprehensive plan to improve its SSI letters. Unfortunately, GAO reports that SSA has "not placed a priority on improving its letters to the public, and it will be years before improvements are completed to most of these letters, even if there are no more delays and SSA adheres to its current plans."

Because so many people with the most severe and disabling mental illnesses rely on SSI and SSDI for basic support to live in the community, NAMI believes that SSA should take the steps necessary to ensure that information regarding eligibility and benefits is understandable. NAMI would concede that the complicated nature of SSA's disability cash benefit programs - and their interaction with health care programs - does not make this task easy. However, the GAO report makes clear that improving the content of letters to beneficiaries has not, this far, been a high priority at SSA.

What needs to be done? NAMI recommends that Congress direct the Commissioner to put in place a comprehensive plan to improve SSI benefit award and adjustment letters. As the GAO recommended in its report, such a system should include performance measures that hold SSA accountable, with specific timetables and outcomes to assess progress.

Moreover, SSA should invest in training for field office staff to help these officials better understand severe mental illness and the unique challenges that they (and their families) face in becoming eligible for SSI and SSDI. The overriding experience of too many NAMI members is that the stigma associated with severe mental illness, and the lack of understanding among field office staff has served as a barrier to getting quick, accurate and fair decision from the agency. On August 21, SSA completed work on revised criteria for "Evaluating Mental Disorders." These new criteria revise SSA "adult neurological listings." SSA is now in the process of training field office staff and state disability determination offices on these criteria. NAMI believes that this provides a unique opportunity for SSA to educate field office staff and state determination agencies on how to more effectively serve claimants and beneficiaries with severe mental illnesses.

Mr. Chairman, thank you for the opportunity to present testimony on this important issue for NAMI's consumer and family membership.