There has been a lack of advocacy within the disability rights community for people with severe mental illness and/or developmental disabilities. People With Disabilities Foundation (PWDF) conducted an informal survey in 2008 and again in 2014, both leading to the same conclusion: advocates, including disability rights attorneys, are less likely to represent this population than those with physical disabilities. For this reason, PWDF has had a Parity in Advocacy Program since 2008.

A case in point is the Disability Rights and Education Defense Fund (DREDF),[2] which, in 2005, filed a lawsuit under Section 504 of the Rehabilitation Act of 1973 against the Social Security Administration (SSA) alleging that the SSA discriminates against people solely on the basis of disability in meaningful access (equal opportunity) to the SSA’s post-entitlement and post-eligibility disability programs.[3]  At first, DREDF, a non-profit agency in Berkeley, California, sought to represent people with severe psychiatric disabilities; however, it then dropped this population in favor of blind persons.

Why did DREDF choose blindness when invisible, psychological disabilities have resulted in barriers to equal access to a much more extreme degree because of stigma and stereotype? Was it because of attorney fees?[4] The attorney fees amounted to $8,000,000 in this case. But this was not the only reason: DREDF stated through its President and CEO of its Board of Directors that it was to “pin down the law.” We note, however, that in 1983, Congress amended Section 504 of the Rehabilitation Act of 1973 to require federal agencies to provide equal program access for people with disabilities.[5]  Notably, the judge in DREDF’s case against the SSA characterized the SSA as making “lame excuses,”[6] in particular for the proposition that Section 504 of the Rehabilitation Act of 2973 does not apply to the SSA. Moreover, Section 504 has always applied equally to mental and physical disabilities since it was enacted in 1973.

In October 2010, when the SSA announced it would conduct a Section 504 agency-wide self-evaluation, through the conclusion of the evaluation in 2013, at no point in time did DREDF and its multiple legal services organization co-signers state in their comments to the SSA with any specificity the needs of individuals with psychosis, such as schizophrenia; mood disorders, such as bipolar disorder; personality disorders; and/or child or adult autism.[7] Nor did they offer any concrete examples of what reasonable accommodations may be helpful for the millions of people with these disabilities. In sum, in 2010, 2011[8], 2012, and 2013, no specific reasonable accommodations applying to mental and/or developmental disabilities were itemized.

Unlike requesting audio formats for those with blindness, disability rights advocates do a disservice to those with psychosis, mood disorders, autism, etc., by perpetrating the stigma (fear) of severe mental illness and behavioral disorders by omitting specific reasonable accommodations for these disabilities.  Although it is a time-consuming process and requires the assistance of psychotherapists, psychiatrists, and neuropsychiatrists to develop these reasonable accommodations, PWDF did so in Terrence Davis v. Michael J. Astrue, Comm’r of the Soc. Sec. Admin. and John Doe v. Michael J. Astrue, Comm’r of the Soc. Sec. Admin., Case Nos. C 06-6108 EMC (NC) and C 09-980 EMC (NC). These reasonable accommodations included designating Social Security disability “program experts” (claims representatives) to facilitate communication between the plaintiffs and the SSA, enabling these employees to attend training with the professionals of the given plaintiff’s choice so that the experts could learn about the plaintiff’s impairments and how to communicate effectively with him, following processes to ensure that the assigned experts are indeed the persons who meet with plaintiffs when plaintiffs request meetings, and providing audio CDs of SSA notices (in addition to the standard written notices). (See pages 4 – 8 of the settlement agreement for more details.)

The ongoing omission of this population in the pursuit of equal rights under the Americans with Disabilities Act (ADA); or more specifically for federal agencies, under Section 504 of the Rehabilitation Act of 1973; is at the heart of the lack of parity in advocacy for too many “disability rights” agencies. Section 504 of the Rehabilitation Act of 1973, requiring equal access to federal programs for people with disabilities, is exactly the same whether the disability is psychiatric, blindness, or any other disability and it has applied to federal agencies since 1983.[9]  The difference is that it is more difficult and requires more work for the attorney to communicate with mentally impaired plaintiffs and members of their support frameworks to ensure that plaintiffs with psychiatric disabilities are not at increased danger of decompensation, suicide, etc., due to the stressors of litigation, than it is to represent plaintiffs with some other disabilities.   Also, one needs to have an understanding of the pathology of psychiatric disabilities, as more fully described in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM).

Of course it is much easier, meaning that it can be more objectively shown in black and white, to prove that someone does not have equal access to a federal program because they cannot see notices relating to forms, medical continuing disability reviews (CDRs), or work reviews than it is to determine what constitutes lack of equal access for people with severe mental illness and then prove it.   In addition, it is presumably harder to win a discrimination case for plaintiffs with severe mental illness than with visual disabilities because of stereotype, stigma, and ignorance.  It has now been 40 years since Section 504 of the Rehabilitation Act of 1973, the first disability rights law and the precursor to the ADA, as amended, was passed and its implementing regulations at 45 C.F.R. Part 85 were promulgated in the 1980’s. Isn’t it time that disability rights advocates stop taking the easiest way out, whether for publicity, attorney fees, or other non-merit reasons within a disability equal opportunity framework, and instead represent the population with the most stigmatized and stereotyped disabilities?

One of PWDF’s seventeen 3-hour, public awareness seminars[10] illustrates the point of this article in another context.   The September 2013 seminar, “Overcoming Barriers to Physical Health Care Access — People with Mental Disabilities Have Shorter Life Spans,” emphasized that the life span for this population is as much as 25 years shorter than that of the general population. Although there are several causal factors for this, an underlying common thread for this is stigma. (See transcript of moderator’s introductory statement from this seminar for more information.)

We hope that our readers will join with PWDF in rectifying this situation. Is not nearly 45 years since Section 504 of the Rehabilitation Act of 1973, which millions of people rely upon, long enough? It was for this reason that PWDF filed the Davis/Doe lawsuits against the SSA during the years 2006 to 2009. In these cases, we achieved nationwide change in getting the SSA’s work review report form (SSA Form 821) revised: in 2011, the SSA revised the form to include factors for people with mental impairments. (Compare old form with new form.)

In 2017, we are seeing more outcomes to other issues for people with psychiatric and/or developmental disabilities that arose in the Davis/Doe cases: The SSA is now taking into account employer subsidies, impairment-related work expenses (IRWEs), and special conditions and apprising beneficiaries that these three categories of work incentives are available by mentioning them on notices of termination of benefits. While this is a start, alone it is inadequate because SSA employees are not trained on medical issues, so they generally do not know the pathology of these disabilities and, therefore, the applicability of the work incentive programs.

As became apparent in the Davis/Doe discovery process (depositions, interrogatories, and document production) the SSA employees who conducted the work reviews have little or no education, training or understanding of mental illness; therefore, they were not able to correctly process these reviews. Instead, the medical analyses are only done by the 50 states’ Disability Determination Services (DDS) offices or by SSA administrative law judges (ALJs), the latter of whom are also not specifically trained in this area. The ALJs can order that medical experts be present and testify at hearings. In addition, although the SSA field offices can send medical issues in work review cases to DDS for analysis, they generally do not.

Therefore, the SSA employees who conduct the work reviews cannot know what factors to look for so they can apply the work incentive rules correctly. Make no mistake, the stakes are high: SSA uses these work reviews to terminate disability benefits for people who try to return to work.  In addition, too often these beneficiaries are not able to respond to a notice of cessation of benefits because of their disability. Within two weeks of the first cessation notice, the SSA sends the beneficiary a computer-generated notice of overpayment, which PWDF has seen in the neighborhood of $100,000.[11]

This example with SSA programs that are not providing equal access to people with psychiatric and/or developmental disabilities illustrates the great need for the disability rights community to advocate for this population. We commend DREDF and other disability rights advocates for challenging discrimination against individuals with disabilities, but urge the disability rights community to do more. We now extend an invitation to DREDF and other disability rights advocates to join us in a panel discussion on how to work with plaintiffs who have severe psychiatric and/or developmental disabilities to ensure that this population has equal access to advocacy.

CONCLUSION

Without the disability rights community coming together and addressing this problem of unequal access with a preconceived plan geared toward people with psychiatric and/or developmental disabilities, it is likely to be another 45 years before there is significant change for this population.  We ask agencies like DREDF and others nationwide, to discuss how the Davis/Doe cases were initially set up so as to have good communication with the plaintiffs and ensure their support frameworks were in place so that PWDF could obtain the right evidence, determine which reasonable accommodations were needed, and minimize the stressors of litigation on Mr. Davis and Mr. Doe. To this end, in March 2015, PWDF live streamed a workshop entitled “Disability Discrimination Lawsuits: Ensuring Equal Access to Advocacy for Clients with Mental and/or Developmental Disabilities.” We urge disability rights advocates to use this information to ensure that all people are represented in the fight for disability rights.