State of the State

This week, Governor Pritzker gave his second State of the State and highlighted a number of issues including education, corruption, property tax relief, pensions and working together.  Here is the transcript to the speech.  Next up will be the Govnero’s budget speech in February 19.

Harmon Names New Leadership Team

New Illinois Senate President Don Harmon, D-Oak Park, announced his leadership team Tuesday on the first day of the 2020 legislative session.  Kimberly Lightford, D-Maywood, will remain the chamber’s majority leader, while Bill Cunningham, D-Chicago, will become an assistant majority leader and president pro tempore — a position once held by Harmon under former President John Cullerton before he changed the caucus’ leadership structure.  Sen. Laura Murphy, D-Des Plaines, will serve in another newly created position — that of deputy majority leader.  Sen. Linda Holmes, D-Aurora, previously a majority caucus whip, will ascend to assistant majority leader as well. She joins Sens. Dave Koehler, D-Peoria, Iris Martinez, D-Chicago, and Tony Munoz, D-Chicago, who all already held assistant majority leader positions and will retain them.  Sen. Mattie Hunter, D-Chicago, will remain majority caucus chair, and Jacqueline Collins, D-Chicago, will be the deputy majority conference chair, a newly created position. She was previously a majority caucus whip.  The three new majority caucus whips will be Omar Aquino, D-Chicago, Michael Hastings, D-Tinley Park, and Napoleon Harris, D-Harvey, all new to the position.

CMS Rolls Out Contested Medicaid Block Grant Plan

From Politico – The long-awaited guidance lets Medicaid directors convert their open-ended funding into block grants, a transformation the Trump administration argues would deliver more flexibility for states’ health spending, Pro’s Rachel Roubein and Dan Diamond report.

The overhaul is in line with long-sought conservative designs for the safety net program. But Democrats and Medicaid advocates say it’s yet another tactic to cap health care funding for low-income Americans and harks back to Republicans’ repeated efforts to kill Obamacare.

“He’s still charging forward with harmful policies that will hurt the many families who rely on Medicaid,” Washington Sen. Patty Murray , the health committee’s top Democrat, said of the president.

CMS Administrator Seema Verma was quick to defend the effort, called “Healthy Adult Opportunity,” before it was released. “The tired canard that the Trump administration is sabotaging the ACA rings hollow,” Verma said. “Rather, we are keeping what works and fixing what’s broken.”

The policy is likely to be challenged in court, yet has sparked interest in some red states. Oklahoma Gov. Kevin Stitt announced plans to use the guidance for a Medicaid expansion.

Pharma pushback expected: The block grant plan would let states exclude coverage of some prescription drugs while still receiving the program’s guaranteed drug rebates – a proposal likely to face resistance from the pharmaceutical industry. Drugmakers have traditionally argued that the large discounts they provide to Medicaid are part of a trade-off in which states must cover essentially all FDA-approved medicines. Under traditional Medicaid, brand drugmakers must provide states a 23 percent rebate or the best price available on the U.S market, whichever is lower.

Employment/Family Support: House Committee to Hold Hearing on Legislative Proposals for Paid Family and Medical Leave

On January 28, the House Committee on Ways and Means will hold a hearing titled “Legislative Proposals for Paid Family and Medical Leave.” Witnesses will include Representatives Rosa DeLauro (D-CT), Ann Wagner (R-MO), and Elise Stefanik (R-NY); Joan Lunden, former host of Good Morning America and women’s health and wellness advocate; Kemi Role, Director of Work Equity at the National Employment Law Project; Sharon Terman, Director of Work and Family Policy at Legal Aid at Work of California; Hadley Heath Manning, Director of Policy at Independent Women’s Forum and Independent Women’s Voice; Rebecca Hamilton, Co-CEO of W.S. Badger; and Vicki Shabo, Senior Fellow for Paid Leave Policy and Strategy at New America. Visit the Committee website for more information or to access live video on the day of the hearing. For more on ensuring that paid leave works for people with disabilities, visit

Major Recent Events

Direct Support Professionals: Senators Introduce Legislation to Allow DSPs in Hospitals

On January 21, Senators Rob Portman (R-OH) and Kirsten Gillibrand (D-NY) introduced the Ensuring Access to Direct Support Professionals Act (S.3220). This bill would allow 1915(c) waiver recipients to bring their direct support professionals (DSPs) with them to the hospital. Medicaid does not currently cover DSPs when a 1915(c) waiver recipient is admitted to the hospital, leading patients to rely on hospital staff not trained on their individual needs. The Arc supports this legislation.

Rights: Senators Introduce Accessible Voting Act

On January 16, Senators Bob Casey (D-PA), Amy Klobuchar (D-MN), and Kirsten Gillibrand (D-NY) introduced the Accessible Voting Act (S.3206). This bill establishes an Office of Accessibility within the Election Assistance Commission to oversee efforts to expand voter accessibility, establishes a new voter accessibility website, and provides additional assistance to states to increase accessibility in the voting process. Additionally, the bill ensures individuals will not lose their right to vote solely because they are placed under guardianship. Learn more. The Arc supports this legislation.


The Arc Census 2020: You Count! Be Counted.

The census helps to direct billions annually in federal funding. Census data is used by businesses, governments, and civic organizations to inform decision making about what services should be available in local areas, and it impacts Congressional representation.

It is critical to reach people with disabilities, family members, direct support professionals, provider organizations, and other community members about the importance of everyone being counted!

The Arc has developed plain language materials for individuals, which are written at an approximately third grade reading level. These materials are available in English and Spanish as plain text Word documents and designed PDFs. The Arc has also developed a fact sheet for organizations to reference when considering how they may help with disseminating information about the census.

These resources are linked below and available at

Resources for Individuals

Resources for Organizations

Questions? Contact Claire Manning, Director of Advocacy and Mobilization, at

PHI Releases First in Year-Long Series of Reports on Direct Care Workforce

On January 21, PHI released the first of a year-long series of reports on the direct care workforce. This report, titled “It’s Time to Care: A Detailed Profile of America’s Direct Care Workforce,” covers the basic terminology in the field of direct care, explores the evolving nature of direct care and growing need for it, and offers policy solutions to address the workforce shortage. The report recommends increasing compensation and creating a workforce pipeline.

The Arc Files Class Action Complaint Against West Virginia School District On January 24, The Arc of West Virginia joined the parents of G.T., a child with autism, in filing a class action complaint against Kanawha County Schools for systemic disability discrimination. The complaint alleges that the school district has failed to provide positive behavioral supports resulting in excessive punishment, segregation, and loss of instruction time. To more learn, see The Arc’s statement.