Students and faculty at Stanford Law School are leading advocacy efforts in intellectual and developmental disability (I/DD) law and policy by developing new resources and increasing awareness of, and access to, existing services and supports.
Utilizing student engagement, policy analysis, and academic research, the Stanford Intellectual and Developmental Disabilities Law and Policy Project (SIDDLAPP), in recognition of the divide that can exist between legal policies and affected people’s lived experiences, creates comprehensive tools that improve transparency and empower stakeholders, particularly those with I/DD and their families.
The initiative, launched in 2019, was inspired by Alison D. Morantz, JD, PhD, director of SIDDLAPP, James and Nancy Kelso Professor of Law, and senior fellow of the Stanford Institute of Economic Policy Research, who had spent a number of years learning about complex I/DD policies and systems in an effort to help her son, who is autistic and developed severe mental illness at eight years old.
“I am incredibly advantaged compared to 99% of parents, yet I felt outgunned and overwhelmed,” Morantz says. “I wanted to help disability laws work better for the people they are supposed to serve, and try to make the system as a whole more transparent and accountable for its performance.”
In an effort to enhance the welfare of those impacted by the Lanterman Act, a California law that gives people with I/DD the right to services and support needed to live an independent life, SIDDLAP’s work largely focuses on researching and developing initiatives that educate and galvanize individuals interested in improving existing policies and holding the state accountable for providing necessary services.
One such resource is the Lanterman Fair Hearing Smart Search Tool, an interactive search engine designed to help users find and download fair hearing decisions published by the Office of Administrative Hearings. The fair hearing process is used to resolve disputes regarding the nature, scope, and eligibility of government services and supports. People can use this information to prepare for their own proceedings. Also created by SIDDLAPP is the Lanterman Transparency Tracker, an interactive tool under development by students like Antonio Milane, a Stanford sophomore majoring in computer science. It is designed to help stakeholders monitor the compliance of the California Department of Developmental Services, a state agency that provides services and support to people with developmental disabilities, and its Regional Centers, by grading these entities on how well they comply with the state’s disclosure and transparency mandates.
Milane, who has cerebral palsy, became involved in SIDDLAPP to further his longtime advocacy. One thing he finds surprising about the tracker is how many Regional Centers are failing to comply with state laws.
“As a person who is disabled myself, it bothers me because these services are supposed to protect and ensure that those who are unable to protect themselves are taken care of, and [we are] just seeing mass noncompliance in some fields,” Milane says.
In addition to these projects, SIDDLAPP is focused on research and development of policy reports, often designed for policymakers. For example, one report, titled “Unfair Hearings: How People With Intellectual and Developmental Disabilities Lack Access to Justice in California,” highlighted problems in the administrative appeals process, and has led to significant policy reform, says Morantz.
The Racial and Disability Justice Pro Bono Project (RAD Justice), another Stanford Law project developing similar materials, is operating in partnership with the nonprofit Integrated Community Collaborative (ICC) as a support network for Latinx people with I/DD and their caregivers. The initiative is designed to address the disparity of services provided by Regional Centers to people with these intersecting identities.
Carly Frieders, a second-year law student involved in RAD Justice, says that, as with many individuals who are a part of SIDDLAPP, the program is meaningful to her personally because her brother is on the autism spectrum.
“Bureaucracies can make it very challenging in some instances for people to get the services that they need.— unless they have advocates like the people who run the ICC, who have been through this process themselves and really know how to advocate for families, or in some cases, advocates like us, who have some knowledge of the legal system and [how to] be persuasive,” Frieders says.
