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Tonight on Disabulletin, updates on a Massachusetts case regarding whether parents can record their child’s Special Education Plan Meetings and congress discusses if a Massachusetts residential school may continue to provide a treatment widely condemned. Finally, an interview with Tim Crishon of Disability Rights Indiana on new changes impacting Indiana Medicaid.
Good evening, tonight we review our previous story on the case of Pitta V Medeiros and the Supreme Court’s decision to either take or leave the case. To recap, the case involved the Pittas, a family in Bridgewater Massachusetts. The school District’s policy, though unwritten in its manual, does not permit recording IEP meetings, as such meetings are confidential. According to court records from the January 2024 United States First Circuit Court of Appeals decision, district officials had previously allowed the Pittas to record via audio devices. Mr.Pitta declined the option, citing a concern that he wouldn’t be able to determine who was speaking during the meeting. Thus, this would prevent him from obtaining an accurate record. The Pittas also argued that under the first amendment, the family could record public officials in performing their duties. The district responded that to record the meeting would intimidate and prevent members of the staff from conducting the meeting, which qualified as a public duty. The district added that as the meeting discussed confidential material, it could not be recorded. Last week, the Supreme Court decided that it would not take the case, thereby leaving the final ruling of the first circuit intact. That ruling denied Mr.Pitta from recording the IEP meeting, thereby closing the case.
Since its founding in 1971 by Dr.Matthew Israel, the Canton, Massachusetts-based Behavioral Research Institute (renamed the Judge Rotenberg Center in 1994) has served as an institution for individuals with developmental disabilities such as Autism. At the center, patients have been taught to stop what staff deems dangerous behaviors that are self-injurious to them or the staff by way of aversive therapy. This therapy consists of a patient experiencing a form of discomfort given by a therapist if the patient engages in perceived inappropriate behaviors. The goal is for the patient to recognize that continued occurrences of such behaviors will result in further exposure to the discomfort given by the therapist, leading them to stop the behavior. The aversives might include telling a student no with a firm voice or using physical restraint if the student engages in self-injurious behaviors such as scratching themselves or physical violence with a staff member.
But the Judge Rotenberg Center is the only institution in the country performing aversive therapy with a device known as the Graduated Electronic Decelerator (GED). The device is usually worn by a patient on their bodies and, if the patient exhibits behaviors the staff deems inappropriate, an electric shock is given to the patient via remote control. According to the most recent information from a Boston media outlet dating back to September 2023 the device is permitted for an estimated 53 patients at the center, all approved by court order.
Previous legislative and federal attempts to ban the center from continuing the treatment have been unsuccessful, with a Food and Drug Administration ban of the device in March 2020 being overturned by the DC Circuit Court of Appeals one year later, on the grounds that the ban went beyond the FDA’s authority. Two years later, Congress passed the Food and Drug Omnibus Reform Act in December 2022, expanding the FDA’s authority to “ban devices used in situations proven to cause substantial and risk of illness or injury.” And on May 28, the FDA closed public commenting on a rule that would officially ban the Rotenberg Center from further usage.
Recently on June 7, a new stipulation was added to the bill attempting to ban the device’s usage, that bill being the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act. According to the Autistic Self-Advocacy network, one of the groups pushing for the banning of the shock device at Judge Rotenberg Section 722 would exempt any devices from being banned if authorized for usage under court order. The bill, with section 722 intact, has now passed the House Agriculture, Rural Development, Food and Drug Administration, and Related Agencies subcommittee and is slated for consideration by the House Appropriations Committee on July 10.
We reached out to JRC Executive Director Glenda Crookes and members of the JRC’s board of directors. All of them requested that we reach out once more once the FDA decides whether or not to pursue the ban on the GED.
But on Friday, June 7, Executive Director Crookes released the following statement to Disabulletin:
“The Judge Rotenberg Educational Center (JRC) will continue to advocate for and, if necessary, litigate to preserve the court-approved, life-saving treatment. FDA has once again made a decision to move forward with a ban of this treatment based on politics, not facts. JRC has provided countless hours of testimony, and volumes of information and made clinicians, other staff and family members of our clients, or clients themselves, available to the FDA over the past 13 years. In 2023, The Massachusetts Supreme Judicial Court affirmed the trial court’s findings that the treatment is safe and for some patients the only effective treatment for their life-threatening self-abuse and aggression. JRC has exceeded all reporting requirements, and the school opted many years ago to install a 24 hour per day video monitoring system – offering unprecedented oversight of the students and staff.”
Changes are coming for Indiana’s Medicaid program on July 1. To make up for financial mistakes in Medicaid spending discovered by the State’s Family and Social Services Administration (FSSA) in January, the government department will no longer provide parents or spouses with Medicaid funds to take care of their significant other or child with a disability. These caregivers are known as the disabled beneficiary’s Legally Responsible Individual or LRI.
In a statement to Disabulletin, Department spokesperson Michele Holtcamp explained that, “FSSA diligently reviewed data, policies, and federally approved program authorities to identify the key causes of the unexpected anticipated increase in expenses. The agency sought to understand the issues so solutions can be as tailored as possible and maintain focus on the people served and supported by FSSA.”
This May, the Indiana chapter of the American Civil Liberties Union in concert with the ARC of Indiana, one of the state’s primary disability advocacy organizations, filed a lawsuit against the FSSA on behalf of those impacted by the change.
CORRECTION: Indiana Disability Rights, in partnership with the ACLU of Indiana, filed this lawsuit. The Arc of Indiana is not involved in this lawsuit.
(Interview With Indiana Disability Rights Legal Director Tom Crishon)
