This week’s Capitol Insider from The Arc of the United States. 


Capitol Insider
for the Week of December 3, 2012 
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Action Alerts

The Convention on the Rights of Persons with Disabilities Scheduled to be Voted on Tomorrow!

Protect Disability Programs in End of Year Budget Decisions

Major Events Last Week

Autism — The American Psychiatric Association approves updates to Diagnostic and Statistical Manual

On December 1, the American Psychiatric Association (APA) announced that its Board of Trustees had approved its update to the Diagnostic and Statistical Manual (DSM). The long anticipated 5th edition of the DSM includes changes that are very important to the intellectual and developmental disability community as numerous federal and state programs as well as private health insurance plans use it to determine eligibility for critical services and supports. As of today, the final language for the new diagnostic criteria has not been made publicly available, though it has been announced that the new diagnosis of “Autism Spectrum Disorder” will combine Asperger’s and Autism under one umbrella term. The Arc submitted comments to the APA in June expressing our concerns over this new term in addition to the proposed new term “intellectual developmental disorder”. The DSM-5 manual is scheduled for publication in May of 2013. Learn more about the new edition of the DSM.

Education – Restraint and seclusion gains national media attention

A news story about abusive restraint and seclusion practices in schools aired on Nightline, an ABC News program. During the story, the narrator pointed out that only a few states have laws that regulate the use of restraint and seclusion. The story is a potent reminder about why The Arc supports S. 2020 and HR.1381, the Keeping All Students Safe Act.

Autism — Senate approves coverage of behavioral therapy for military dependents with developmental disabilities

On November 29, the Senate approved an amendment to the National Defense Authorization Act that requires TRICARE, the military’s health care system, to cover certain treatments for autism and other developmental disabilities. The measure, introduced by Senator Kirsten Gillibrand (D-NY) and championed by Senator Patty Murray (D-WA), passed by a vote of 66 to 29. Many children with autism only receive this diagnosis after several years, during which time they are often diagnosed with conditions such as Pervasive Developmental Disorder — Not Otherwise Specified (PDD-NOS). The new amendment language will help ensure that children with a range of developmental disabilities begin to receive critical behavioral health treatments, including applied behavioral analysis (ABA), at the earliest age possible. The Senate must next vote on the entire defense budget bill. A conference committee between the Senate and House will reconcile the two versions before a final bill is voted on by both chambers and sent to President Obama for signature. In May, the House passed a narrowed TRICARE measure that only covered those with autism in its defense budget bill.

Autism — House Hearing on the Federal Response to Rising Rates Autism Focuses on Causation

The House Oversight and Government Reform Committee, chaired by Rep Darryl Issa (R-CA), held a hearing entitled, “1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism” on November 29. The four hour hearing included witnesses from the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), Autism Speaks, the Autism Society, Mercyhurst University, SaferMinds, the Global & Regional Asperger Syndrome Partnership, and the Autism Self Advocacy Network. Much of the testimony and subsequent questioning focused on the issue of causation, particularly the continuing use of mercury in multi-vial doses of vaccines. Read the testimony and view the archived webcast.
Major Events This Week

Civil Rights — The U.S. Senate expected to vote on the Convention on the Rights of Persons with Disabilities this week

The Senate passed a motion to proceed on the Convention on the Rights of Persons with Disabilities (CRPD) by a vote of 61-36, with three members not voting. Advocates anticipate that the treaty could be voted on in the next few days.

Education — The Department of Education releases 2012 report entitled, “Helping to Ensure Equal Access to Education”

The Department of Education’s Office for Civil Rights (OCR) released a 2012 Report to the President and Secretary of Education entitled, “Helping to Ensure Equal Access to Education.” The report covers fiscal years 2009-2012. During that time period, OCR handled 24% more cases than during the preceding 4 year time period. Over half (55%) of the 28,971 complaints OCR handled concerned disability discrimination. OCR reported that almost one-third of school districts reported at least one incident of bullying or harassment based on disability. OCR reported that students with disabilities served by the Individuals with Disabilities Education Act (IDEA) were twice as likely to be suspended out of school (13%) than their peers without disabilities (6%).

In addition to investigating complaints of discrimination, OCR also issues guidance for school districts. Since January 2009, OCR has issued four guidance documents that address or include topics related to disability rights: (1) equal access to electronic book readers and other technology for postsecondary students with disabilities; (2) equal access to emerging technologies for all students, including elementary and secondary school students; (3) schools’ obligations to respond to bullying and harassment based on disability; and (4) changes in the meaning of “disability” made by the ADA Amendments Act of 2008.

Social Security – New Report on Supplemental Security Income (SSI) for Children with Disabilities

The National Academy of Social Insurance (NASI) has released a new brief, “Supplemental Security Income for Children with Disabilities.” The brief highlights the importance of SSI for children with significant disabilities and their families. Key findings include:

  • SSI plays a significant role in reducing poverty among children with disabilities, without reducing parental employment;
  • Nearly all of the increase in the number of children receiving SSI from 2000-2010 is explained by the increase in child poverty during that time; and
  • SSI payments to children as a share of U.S. Gross Domestic Product are projected to decline after 2013.

Put a Face on Medicaid, SSI, Social Security

As Congress reconvenes for a post-election session where potential changes or cuts to programs like Medicaid, Supplemental Security Income (SSI), and Social Security may be put on the table, we need your help to put a face on the importance of these programs by sharing lifeline stories about individuals with intellectual and developmental disabilities (I/DD).

The Arc’s national office needs stories from self-advocates, parents, and other family members, chapters of The Arc, other service providers, and friends. We have to put a face on programs like Medicaid, SSI, and Social Security in order to convince Congress to protect these programs from devastating cuts during budget negotiations. More than 200 stories have been submitted from 22 states. This is a great start, but it is critical that we receive sufficient stories from across the country.

Please share this survey with your members, the families you serve, and other organizations in your community so that we can gather as many stories as possible, and quickly, so that The Arc can help protect these lifeline programs.


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)