Corona/Covid 19

We continue to monitor the public health issues facing us and our communities.  As you are aware, most meetings larger than 30 have been canceled or rescheduled, including at the state capital with the legislative session being canceled next week. The Going Home Coalition is continuing to take registration for the May 14 rally, and will determine closer to the event if it is still appropriate to hold it.

DDD announced that following other long term care facilities, state operated development centers will be discontinuing all non-essential visitors to SODCs, implementing a screening process for employees and keeping people at home from day programs.  We have seen other ICFs making that decision around day programs as well.  We also know that some ISCs are holding on doing in person visits for at least two weeks.  We know that community organizations are having to make some tough decisions about safety and still ensuring people can be supported to participate in community activities.  We see families who are also very concerned and want to be supportive.   

Below is some information that you might find useful as individuals, families and community organizations try to make the safest decisions possible.  We will continue to share what we see are helpful tools.  

  • Monday for organizations affiliated with the Arc, we are holding a 3:30 pm call to talk about how different organizations are addressing concerns.  Contact for the call in information.
  • Below is a letter with a link to guidance from DHS to partner organizations from Sec Hou.

Dear Partners,

Last week we sent information regarding COVID-19 (the 2019 novel coronavirus) to you and your organization. That memo was meant to provide best practices and preventative safety measures that we hope you considered implementing at your organizations.

As we learn more from our partners at the Illinois Department of Public Health (IDPH) and the Centers for Disease Control (CDC), we wanted to provide further guidance. The below memo is intended as a tool for your organization to help you respond to and prepare for the current coronavirus situation.

Memo to IDHS Providers

There are several sections of the memo dedicated to specific types of organizations. Not all information will apply to your setting, programs, or organization. In the memo you will find:

  • Guidance for programs funded, licensed, or regulated by IDHS when making home visits on Page 1,
  • Guidance for screening visitors/members of the public to IDHS facilities and to residential and non-residential programs funded, licensed, or regulated by IDHS on Page 3,
  • Guidance for current and potential incoming residents at IDHS facilities or other residential programs funded, licensed, or regulated by IDHS on Page 4,
  • Guidance for visitors to any childcare setting, including specialist and monitors on Page 6, and
  • Additional general guidelines from the CDC on page 7.

We will stay in communication with you as we learn more from our state and federal partners. Additional information is available from the Illinois Department of Public Health at their Coronavirus-2019 website and the COVID-19 Hotline at 1 (800)889-3931.  As always, my team is committed to your well-being and to the health of all those we serve.

Sincerely,  Grace B. Hou, Secretary, IDHS

Other guidance shared previously:

DHS Comments to Providers

IDPH Comments to LTC

Federal Updates:

The Money Follows the Person Medicaid Program = Independence

There’s no place like home-and the Money Follows the Person (MFP) program provides additional Medicaid funding to states to move more than 91,000 seniors and individuals with disabilities out of institutions and back home. We need to tell Congress to permanently reauthorize this important program!

Background: MFP significantly improves the lives of older adults and people with disabilities by assisting them to transition out of institutional settings. After time in a nursing home or an institution, MFP supports people to move back home by providing necessary community-based supports, such as staff to support individuals in their homes, home modifications, and community services.

Independent evaluations have proven MFP improves the quality of life for individuals and has reduced Medicaid expenditures by approximately 23%. States save money and see better outcomes-that’s why nearly every state has participated in the program. However, without reauthorization, states will stop transitions to the community.

Funding for MFP expires May 22, 2020. Without action NOW, more people will be stuck in institutions.

Act Now: Call your Members of Congress and ask them to permanently reauthorize MFP.

Rights: FDA Issues Long Awaited Final Rule Banning Electric Shock Devices

On March 6, the Food and Drug Administration (FDA) published a final rule prohibiting electrical stimulation devices (ESDs). These devices have inflicted painful abuse on residents of the Judge Rotenberg Educational Center in Canton, Massachusetts for decades. The rule takes effect on April 6, and all individuals currently subject to the devices must be transitioned off by September 2. Read The Arc’s statement.

Direct Support Professionals: Bipartisan Legislation Creating Separate Code for DPSs Introduced in the House and Senate

Senators Maggie Hassan (D-NH) and Susan Collins (R-ME) and Representatives Kathleen Rice (D-NY), Sean Maloney (D-NY), John Katko (R-NY), and Brian Fitzpatrick (R-PA) introduced the Recognizing the Role of Direct Support Professionals Act (S.3369/H.R.6045). This bill directs the Office of Management and Budget to revise the Standard Occupational Classification system to create a separate code for Direct Support Professionals (DSPs). A separate code will allow states and the federal government to collect more accurate data to address turnover and shortages. The Arc Supports this legislation.

Tell Congress to Recognize the Role of Direct Support Professionals!

Family Support: Senate Approves Reauthorization of Older Americans Act

On March 6, the Senate passed the Supporting Older Americans Act of 2020 (H.R.4334). This bill reauthorizes the Older Americans Act, including the National Family Caregiver Support Program (NFCSP). The NFCSP provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. This bill removes a 10% cap on funding for services for “older relative caregivers,” a term that includes family caregivers of adults with disabilities ages 18-59. The Arc supports this legislation.

Major Events Ahead

Family Support/Employment: House Committee to Hold Hearing on Paid Sick Leave Legislation

On March 11, the House Committee on Education and Labor’s Subcommittee on Workforce Protections will hold a hearing on the Healthy Families Act (H.R.1784). This bill provides for paid and unpaid sick leave for employees to meet their own medical needs and those of their families. It requires employers with 15 or more employees to provide their employees with at least one hour of earned paid sick leave for every 30 hours worked, up to a maximum of 56 hours of paid sick leave a year.

Visit the Committee website for more information or to view live video of the hearing.


Housing: Affirmatively Furthering Fair Housing Comments Due March 16 On January 14, the Department of Housing and Urban Development (HUD) issued a proposed rule that erodes the protections of the Fair Housing Act. The proposed rule is a big step back from efforts to fight housing discrimination and segregation in the U.S. The proposed rule has many harmful changes, and it removes language requiring that steps to affirmatively further fair housing include expanding opportunities for people with disabilities to live in “the most integrated setting appropriate to the individual’s needs.” A comment template can be found here. Submit comments here by March 16. Learn more with this short explainer and at