Capitol Insider 

Major Event This Week

 Rights – Food and Drug Administration (FDA) Proposes Ban on Electrical Shock Devices

On April 25, the FDA published a Proposed Rule in the Federal Register banning the use of electrical stimulation devices (ESD) to treat aggressive or self-injurious behavior. In considering the ban, the FDA determined that the risks of ESDs outweighed any potential benefits. The FDA “determined, on the basis of all available data and information, that state-of-the art treatments for SIB [self-injurious behavior] and AB [aggressive behavior] are positive-based behavioral approaches, sometimes alongside pharmacotherapy, as appropriate, and do not include ESDs. We focused on data in the scientific literature, current clinical practices, and information about the evolution of treatments for SIB and AB.”

These devices are believed to be currently in use by only one provider in the country, the Judge Rotenberg Educational Center (JRC) in Canton, MA. The FDA’s proposed rule provides an extensive review of the use of ESDs by JRC and the opposition to it by state agencies in Massachusetts and New York, as well as the United Nations and the U.S. Department of Justice. An Advisory Panel recommended the ban in 2014. The FDA is proposing that the ban apply to devices already in use, as well as devices sold or commercially distributed in the future, although it is willing to allow for some period of transition for some individuals. The agency notes that for “certain individuals currently subject to ESDs, immediate cessation could possibly result in a significant increase of SIB or AB before appropriate alternative therapies are in effect, and a more gradual reduction toward complete removal may be necessary for some patients, especially those who have been subject to ESDs for a considerable amount of time.” The FDA welcomes comment on how long those transitions may take.

Comments on the proposed regulation are due May 25, 2016. The Arc has been involved in advocating against the use of these devices for decades and applauds this proposed rule.

Major Recent Events

 Transportation – Senate passes Federal Aviation Administration (FAA) Reauthorization Act

On April 19, the Senate passed a bill to reauthorize the FAA. The bill includes provisions designed to improve the air travel experience for passengers with disabilities, including a review of airline policies regarding training for employees on assistance for people with disabilities and the creation of an Advisory Committee on the Air Travel Needs of Passengers with Disabilities. The House Transportation and Infrastructure Committee has passed its version out of committee and it awaits action on the House floor.

Family Support – Older Americans Act Reauthorization Enacted, Expanding Eligibility for Family Support Program

The Older Americans Act Reauthorization Act of 2016 was signed into law by President Obama on April 19. Among its many provisions, Public Law 114-144 includes a fix to the National Family Caregiver Support Program (NFCSP) The NFCSP, which received $150 million in FY 2016, provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. The new law extends eligibility to older relative caregivers (age 55 and over) of adults with disabilities (age 19 to 59).


Family Support – New Funding Opportunity Announcements for Lifespan Respite from the Administration for Community Living for New States

The Administration for Community Living (ACL) has announced funds for new grants for Lifespan Respite systems. The grants will include a federal funding level of up to $200,000 per award for a 36 month project period and will fund up to three cooperative agreements. Grant funds are for planning, establishing, and expanding/enhancing Lifespan Respite Care systems in the states, including new and planned emergency respite services, training and recruiting respite workers and volunteers, and assisting caregivers with gaining access to needed services. While the eligible applicants are state governments, all applicants must demonstrate the support and active involvement of a range of government and non-government, private, non-profit and other organizations with a stake in serving populations eligible to receive services under the Lifespan Respite Care Act. Only one application per State will be funded. Once funded, grantees will be expected to collaborate with multiple state and local agencies representing all ages, populations and disability/disease groups in planning and carrying out the requirements of the project. The announcement can be found here.

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Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)