In a 2003 publication Canadian disability rights scholar Marcia Rioux observed that shifting ideological paradigms, shifting legal standards and ever-changing policy programming makes advancing rights for people with disabilities a huge challenge.This has been true historically and remains true today.Especially in the area of state supports and especially for disabled kiddos (both sides of the border).
In this post I’m going to discuss some aspects of a landmark decision in the context of Rioux’s insight. First, why talk about an old US case though?
One reason is that this case made a big splash. For that reason alone it commands our attention. https://www.latimes.com/archives/la-xpm-1990-02-21-mn-983-story.html
Another is that the sheer simplicity combined with the legal complexity of this case has interested me for over a a decade. I’ve written about it before, in this book chapter Jennings, S. (2013). Advancing the Rights of Children with Neurological Conditions in Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions. Ed. G.M. Ronen and P.L. Rosenbaum. Mac Keith Press, London, England.)
Another reason is simply because we don’t have a Zebley case in Canada. In Canada most instrumental (tangible) childhood disability supports are provided provincially and territorily and the lawsuits are against the provinces and territories. The track record of (mostly) mothers litigating regarding these has not been a strong one in terms of results. Zebley on the other hand is a Federal childhood disability right decision for disabled child rights to support. It had teeth.Big teeth. Its impact is still being felt today, as this Youtube clip Zebley at 25: Community Legal Services’ Celebration of Children’s SSI illustrates: https://www.youtube.com/watch?v=uYnFfXodKC8
The Zebley decision was also a poverty rights decision at the intersection of disability. It successfully put some ‘security’ back into the phrase ‘Social Security’. This can be seen in the area of children with disabilities rights to some monetary support in the US in theaftermath of the landmark Supreme Court decision Sullivan v. Zebley (1990) (this is not to say that this case is a panacea for the global support of children with disabilities south of the border, it’s not).
Young Brian Zebley was born in 1978. At the time of the case, he was a very young disabled boy born into a poor family. He lived with a congenital brain condition, visual and intellectual impairments, developmental delays, and partial paralysis (Erkulwater 2006). Thus, he was living with multiple impairments but his family was nevertheless denied child disability benefits.
Two child rights lawyers brought an action against the government to have the childhood disability law’s assessment process changed. The Sullivan v. Zebley (1990) matter was brought as a class action lawsuit on behalf of children whose claims for SSI benefits had been denied (Doolittle 1998).
According to Erkulwater (2006) over 300000 children were represented by the class.
This case because is a reminder that class actions for children with disabilities are possible.
As in the (much smaller) Canadian case of Larcade v. (Ontario) Ministry of Community and Social Services (2005), a lower court at one stage in the litigation dismissed the class complaint in the Zebley matter (United States Social Security Administration Office of Disability Adjudication and Review 2012).
The difficulty of litigating as a class in these childhood disability support cases on both sides of the border demonstrates that a reliance upon litigation as a tool to advance the rights of children with disabilities can be very challenging.
Erkulwater (2006) in her book Disability Rights and the American Social Safety Net comments that the Zebley case ‘was one of the few social security cases to have ever reached the Supreme Court’. She states that ‘… latecomers to disability litigation, the Supreme Court did not hear a social security case until 1968 and when it did it always sided with [the Social Security Administration]’.
There was something quite compelling to the US Supreme Court about the situation of lower-income severely disabled children who were left out of the scheme of benefits as then structured.
Regarding Brian Zebley, Doolittle (1998) explains that ‘the reason he was denied was because his conditions did not match [the Social Security Administration’s] listed adult or childhood impairments’.
On a review, the court held that in determining eligibility for benefits, the Social Security Administration had to allow for an individual functional assessment and the court required additional disabling conditions be added to the list such as Down syndrome, fetal alcohol syndrome and other serious hereditary, congenital, or acquired conditions (Doolittle 1998).
Erkulwater (2006) asserts that Brian Zebley had become ‘a casualty of the Reagan administration’s purge of the disability rolls at the age of 5’. I find this to be an interesting observation in light of the progressive steps President Reagan took in the Katie Beckett case, and forces one to confront the relationship between social assistance and disability overall. And the extent to which childhood disability supports can be non-partisan.
The very title of Doolittle’s (1998) article ‘Welfare reform: loss of supplemental security income (SSI) for children with disabilities’ makes the point well. And Erkulwater (2006) draws attention to an important pathway that exists between disability and also poverty in childhood. Litt (2004) & Doolittle (1998) explain that changes came about in disabled children’s SSI benefits in 1996 through ‘the Personal Responsibility and Work Opportunity Reconciliation Act, which is described as being ‘a retrenchment’ (Doolittle 1998) from advances made to the right to support children with impairments in the Zebley (1990) case. Doolitte (1998) and Litt (2004) draw attention to a most economically vulnerable sector of the disabled child population in the USA, namely those who are cared for by a single mother.
These authors also examined connections between poverty and childhood disability, supporting a position that disabled child rights cannot be advanced in without attending to poverty. They also examined the political context for such unhelpful changes to the support of children with disabilities in the States in the 1990s. Of interest here too is that Litt (2004) asserts that children below the low-income cut-off in the USA are twice as likely to report a limitation or impairment as those who are economically above the poverty line.
In ‘Profiling health and health related service for children with special health care needs with and without disabilities’ (Houtrow et al 2011) hypothesized ‘that children with special health care needs (CSHCN) with additional disabilities have more severe and less stable health conditions than other CSHCN and have more extensive health service needs, but have higher rates of unmet needs and less commonly receive care within a medical home than other CSHCN.’
They further proposed that ‘after controlling for health condition severity and socio-demographic features commonly associated with health care inequities, CSHCN with disabilities have increased odds of unmet service need’; indeed, their study found that both health and social challenges faced by children with special healthcare needs with disabilities were more pronounced (Houtrow et al 2011).
What their findings indicate overall is that in the USA, as elsewhere, more attention must be paid to the policy needs of children with severe conditions.
Photo at top of Blog Post of Richard Weishaupt & Jonathan Stein after their win at the United States Supreme Court in 1990 in the Zebley case. For the photo credit and article that accompanies it go to: https://w1.dickinsonlaw.psu.edu/sites/default/files/Rains-Zebley-Clearinghouse-Community.pdf
Sullivan v. Zebley, 493 US 521 (1990)
Doolittle DK (1998). Welfare reform: loss of supplemental security income (SSI) for children with disabilities. J Soc Pediatr Nurs 3: 33–44.
Erkulwater JL (2006) Disability Rights and the American Social Safety Net. Ithaca, NY: Cornell University Press.
Houtrow AJ, Okumura MJ, Hilton JF, Rehm RS (2011). Profiling health and health related services for children with special health care needs with and without disabilities. Academic Pediatr 11: 508–515. http://dx.do
Litt J (2004). Women’s carework in low-income households: the special case of children with attention deficit hyperactivity disorder. Gender Society 18: 625–644.
Rioux M (2003) On second thought: constructing knowledge, law, disability, and equality. In: Herr S, Gostin L, Koh H, editors. The Human Rights of Persons with Intellectual Disabilities: Different But Equal. London: Oxford University Press. pp. 287–317.