Heading to the Capitol today for Senate Appropriations Committee hearing on the
Dept of Human Services Budget. The Arc supports the Governor’s Proposed Budget.

Amazing breakfast meeting the the Chicago Community Trust and business leaders
on Employment First. More on the later.


Capitol Insider

Week of April 28, 2014

Major Events This Week

Tax Policy – House Committee Scheduled to Mark up Tax Extenders Bills

Tomorrow, the House Way & Means Committee is scheduled to debate bills that
permanently extend several tax breaks.  Two of these tax breaks benefit a small number
of multinational corporations and would add $79 billion over 10 years to our deficits.
These bills are important to the disability community because tax dollars that are lost
(also known as “revenue forgone”) increase our deficits and, consequently, increase
pressure to cut critical programs like Medicaid.   Two tax extenders, in particular,
included in H.R. 4429 & H.R. 4464 would benefit wealthy, multinational corporations
that ship jobs and profits offshore.

Major Events Last Week

Civil Rights – Disability Rights Leadership Institute on Bioethics

Led by Not Dead Yet, the Disability Rights Education and Defense Fund (DREDF), the
Autistic Self Advocacy Network, and several other national disability organizations,
leaders in disability rights and bioethics met April 24-25 to discuss the growing threats
to people with disabilities of withholding of medical treatment on the basis of disability;
assisted suicide laws; and ethical issues of genetic and reproductive technologies.
Concerns are growing both within the United States and internationally regarding the
threats to people with disabilities inherent in possible health care rationing, assumptions
by others about what makes life worth living, and laws and policies that allow physicians
to withhold life-sustaining treatment over the expressed objection of the individual or their
surrogate.  The Arc participated in the conference, which ended with plans for working to
gether further to address the issues raised by the speakers and participants.


Civil Rights – Food and Drug Administration Conducts Public Hearing on the
Risks of Aversive Electric Shock to Modify Behaviors

A majority of members of an advisory panel to the Federal Food and Drug Administration
(FDA) indicated that the risks of using aversive electric shock to modify behaviors
outweighed the benefits of such procedures.  The Neurological Devices Panel of the
Medical Devices Advisory Committee to the FDA conducted a public hearing at which The
Arc and 12 other disability advocacy organizations testified against use of aversive
procedures, such as electric shock, on individuals with intellectual and developmental
disabilities.  The majority of the panel concluded that electrical stimulation devices (ESDs)
intended to administer a noxious electrical stimulus for the treatment of self-injurious
behavior (SIB) and aggressive behavior presented a substantial and unreasonable risk of
illness or injury.

The only facility that uses electric shock devices currently is the Judge Rotenberg Center
(JRC) in Canton, Massachusetts.  The Center manufactures and uses the Graduated
Electronic Decelerator, or GED.  Versions of the device being used at JRC are
unapproved modifications of a 1994 FDA-approved GED.  Staff from JRC as well as
parents of individuals at the Center offered testimony during the hearing defending use
of the GED.  JRC has been investigated by authorities in New York and Massachusetts
and by the United Nations.  The Department of Justice has an on-going investigation of
the Center.

Deadline for Marchand fall 2014 internship application extended – New deadline
is May 1

For 38 years, Paul Marchand was a dedicated disability policy advocate and recognized
leader working on behalf of people with intellectual and developmental disabilities (I/DD)
and the entire disability community.  Upon his retirement in 2011, The Arc, with substantial
contributions from United Cerebral Palsy, other organizations, and individuals with whom
Paul worked during his decades in Washington, established an internship to honor Paul
and to continue to cultivate disability policy advocates.  The Paul Marchand Internship
Fund will provide $3,000 per semester or summer session to assist interns pursuing
careers in public policy advocacy for people with I/DD.  See Application information and
Internship FAQs 
for more information.

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)