Medicaid/Rights – Senate Vote Expected This Week on Delay of EVV

The Senate is expected to vote as early as today on a bill to delay by one year Electronic Visit Verification (EVV) requirements for tracking when personal care services are provided to people with disabilities. The bill also expresses the sense of Congress that the Centers for Medicare and Medicaid Services should hold at least one public meeting and solicit ongoing stakeholder input on its recently-issued guidance. The House of Representatives passed its version of the bill (H.R.6042) by voice vote last month. Learn more about this bill here. The Arc urges advocates to contact their Senators as soon as possible.

Medicaid/Rights – House Passes Bill to Delay EVV Implementation

On June 19, the House of Representatives passed H.R.6042 by voice vote. This bill delays implementation of the Electronic Visit Verification (EVV) requirements of the 21st Century Cures Act by one year, until January 2020. The bill also expresses the sense of Congress that CMS should hold at least one public meeting and solicit ongoing stakeholder input on its recently-issued guidance. Learn more about this newly-passed bill here.

Rights – June 22 Marks 19th Anniversary of Olmstead Decision

June 22 will be the 19th Anniversary of the Supreme Court’s ruling in Olmstead v. LC. The case involved Lois Curtis and Elaine Wilson, two women intellectual disability and psychiatric disabilities who were living at the Georgia state psychiatric hospital. Despite clinical assessments determining that a community setting would be appropriate, the state of Georgia refused to allow them to receive services outside of the institution. The Court ruled that placement in an institutional setting against one’s will against clinical recommendations violated the Americans with Disabilities Act.

Immigration/Rights – The Arc Condemns Family Separations and Calls on Congress to Act

Recently, the Administration announced a change in immigration policy that has resulted in children being separated from their parents at the US-Mexico border. Historically, crossing the border illegally was considered a civil offense and parents were able to stay with their children while legal proceedings were carried out (for example, to determine whether the family qualified for asylum). Under the new policy, crossing the border illegally is considered a criminal offense. Children are not allowed to stay with their parents while criminal proceedings are carried out because adult detention facilities cannot ensure child safety. Last Friday The Arc released a statement regarding the forced immigrant family separations that are occurring at the U.S.-Mexico border. “The Arc stands with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc. “The notion of uniformed, federal border protection agents forcibly separating parents from their children is outrageous.” Read The Arc’s full statement here.

Medicaid/Rights – CMS Issues Guidance on Electronic Visit Verification

On May 16, the Centers for Medicare and Medicaid Services (CMS) issued guidance on implementation of electronic visit verification (EVV) required in the 21st Century Cures Act. Congress directed CMS to issue this guidance at least one year before the implementation deadline of January 19, 2019. The statute requires EVV for personal care services and home health services. However, the guidance provides a very expansive interpretation that includes any service where assistance with activities of daily living or instrumental activities of daily living is provided in part in the home. Furthermore, it leaves many decisions with privacy implications up to states. The Arc believes the short time frame is insufficient for states to engage with stakeholders to implement these requirements in a way that does not put an undue burden on providers and does not violates the privacy of beneficiaries.

Rights – U.S. Commission on Civil Rights Holds Public Briefing on Hate Crimes; The Arc’s Director of Rights Policy Testifies

On May 11, the U.S. Commission on Civil Rights held a public briefing titled “In the Name of Hate: Examining the Federal Government’s Role in Responding to Hate Crimes”. Nicole Jorwic, Director of Rights Policy at The Arc of the United States, testified about hate crimes against people with disabilities. She discussed the many barriers to the reporting and prosecution of hate crimes, including untrained officers believing that victims with disabilities are not credible, lack of standardized protocols for handling complaints from victims with disabilities, lack of training for prosecutors and other court officials, hate crimes being minimized and viewed as pranks or bullying, and people with disabilities being afraid to report someone they know. Watch Nicole’s testimony here.

Education/Rights – Bills Introduced to Provide Protections from Campus Sexual Assault for Students with Disabilities

Senators Bob Casey (D-PA) and Maggie Hassan (D-NH) introduced S. 2530, the Safe Equitable Campus Resources and Education (SECuRE) Act on March 9. Representative Debbie Dingell (D-MI) introduced companion legislation (H.R. 5241) in the House of Representatives. The SECuRE Act ensures the needs of students with disabilities will be taken into account in campus planning and response efforts to sexual assault on campus, and that resources provided to the campus community are accessible to everyone. Specifically, the SECuRE Act would improve prevention programs, reporting systems, personnel training, and disciplinary proceedings. A recent report from the National Council on Disability, “Not on the Radar: Sexual Assault of College Students with Disabilities,” found that the needs of these students are often not addressed under existing policies. The Arc supports this legislation.

Rights – House Passes Bill Weakening Enforcement of the ADA

On February 16, the House of Representatives passed the ADA Education and Reform Act of 2017 (H.R. 620) by a vote of 225-192. This bill prevents lawsuits over architectural barriers violating the Americans with Disabilities Act (ADA) unless an individual provides “specific enough” notice and allows 120 days for a business to correct that barrier. The bill’s supporters believe that the ADA has led to “frivolous lawsuits” where plaintiffs and attorneys intentionally seek barriers in order to extract funds. However, the ADA does not allow courts to award monetary damages to plaintiffs. Where those damages are available, it is through state law. Furthermore, there are already laws on the books that allow punishment of attorneys who represent clients in frivolous lawsuits. This bill effectively eliminates incentives for businesses to comply with federal law until 120 days after a person with a disability asks them to do so. See this fact sheet from Disability Rights Education & Defense Fund for more information. Click here to read The Arc’s statement.

Education/Civil Rights – List of Schools and Districts Under Investigation Now Available

The Department of Education’s Office for Civil Rights (OCR) published a list of pending cases currently under investigation at elementary, secondary, and postsecondary schools, sorted by aspects of the law that OCR enforces, including disability. The inclusion of an institution on this list means only that a complaint was filed with OCR, and the agency determined the complaint should be opened for investigation or the agency has opened a compliance review. OCR is still investigating these cases or otherwise working to resolve them. See the list of institutions under investigation for disability discrimination here.

Rights – NPR Series on Abuse of People with Intellectual and Developmental Disabilities Begins Today

At a moment of reckoning in the United States about sexual harassment and sexual assault, a yearlong National Public Radio (NPR) investigation finds that there’s little recognition of a group of Americans that is one of the most at risk: adults with intellectual disabilities. The series starts on Monday, January 8th and runs through Thursday, January 18th. The Director of The Arc’s National Center on Criminal Justice and Disability, Leigh Ann Davis, was interviewed for this series in addition to staff and clients on several chapters of The Arc. The series schedule is as follows and can be found at

  • Jan 8: Morning Edition: Correspondent Joe Shapiro talks about the series with host Steve Inskeep.
  • Jan 8: All Things Considered: The epidemic of sexual abuse of people with intellectual disability. Numbers obtained by NPR show they are sexually assaulted at rates more than 7 times those for all adults without disabilities.
  • Jan 9: Morning Edition: A visit to a Sex Ed class for people with intellectual disability. They talk about how they want relationships, but how the sexual violence of their past often gets in the way.
  • Jan 10: All Things Considered: On cases that go unnoticed when people have difficulty communicating.
  • Jan 16: All Things Considered: Police and prosecutors are often reluctant to take these cases. NPR goes back to Essex County, New Jersey, where the first case to get widespread attention–in Glen Ridge, New Jersey, 25 years ago–was prosecuted. And look at what prosecutors have learned since.
  • Jan 18: Morning Edition: Therapists Nora Baladerian and Karyn Harvey talk about the stunning violence in the lives of their clients.
  • Jan 18: All Things Considered: Self-advocates speak of the effects of sexual violence. This piece is entirely in the voices of people with intellectual disability (plus Joe Shapiro).