It has been a busy week! In this update we talk about:

  1. State legislative activity
  2. Electronic Visit Verification and connection to Homebased
  3. Self-Direction Assistance Changes
  4. 1115 waiver implementation and possible connection with IDD
  5. Lawsuit around Medicaid Issues
  6. Access Living Lawsuit about Chicago Special Education

State Legislative Activity

This was a committee deadline in the House.  Passing out of committee to move to a full House vote:

  • SB2424 – Diversion from Facilities
  • SB3237 – Expands and clarifies OIG appeal rights for people with disabilities, families and providers.
  • SB2429 – Expansion of dental care
  • SB 3041 and HB 5163 – Expansion of DD boards
  • SB 2660, Prohibits the state to claw back money from an ABLE account if a person passes.
  • SB 454, Requires an IEP team to include a statement about why they do not need assistive technology if they indicate the child does not.

Sb3508 – DSP Wage bill – was heard on Thursday as a subject matter hearing in the House Human Services Appropriation Committee.  A parent and provider spoke about the staff crisis and the impact it is having on the lives of people with disabilities.  The coalition wants to put continued pressure on the legislature to support the bill and add significant funding into the budget.

HB 4383, Ensuring Patient Continuity of Care – This bill (sponsors: Feigenholtz/Steans) gives Medicaid managed care patients the option to remain with their primary care provider if their care is disrupted due to a contract termination between the PCP and a health plan. Currently, if such a contract is terminated, the patient must choose a new PCP which in many instances can sever a longstanding relationship, and is disruptive to continuity of care. Track bill status – It has passed both the House and is on second reading in the Senate.

Two relatively new bills we are watching:

Announced this week – Electronic Visit Verification Guidance

Before your eyes glaze over – if you are connected with Homebased, you want to pay attention!  CMS released additional guidance for states around EVV. It is saying that excludes ICFDDs AND group home/congregate settings (see the FAQ link below).
Although it appears congregate settings are except, individuals receiving homebased services would be included.  Currently in the Home Services System, they use EVV where by a worker needs to call from an approved phone line to clock in and out.  Home services participants have seen some challenges including only one phone line being allowed to be the approved line so unless you have a cell phone, workers must come to  the house to clock in and out even if the individual wants to meet them out somewhere else.
Guidance is here:

The Arc of the United States is still advocating for general delay of implementation is struggling states like ours.

Webinar available on this issues: Tuesday, May 22nd, from 2:30-3:30 PM (EST)

Check out the webinar for a review and analysis of the Electronic Visit Verification (EVV) Informational Bulletin and Frequently Asked Questions released today by the Centers for Medicare & Medicaid Services (CMS). During the webinar, we will discuss what the guidance confirms and clarifies about the implementation of EVV Systems as required by the 21st Century Cures Act.

This webinar is open to the public. There is no cost to attend, but attendance is limited to the first 500 attendees. To join the webinar:

  1. Go to​ for audio and slides.
  2. Choose to “Enter as a Guest” and type your first and last in the white space, then click “Enter Room”.

Prepare now: Test your system at:  prior to the webinar.

New SDA Rules and Requirements 

We are hearing concerns around the limits and parameters that DDD is putting on what Self-Direction Assistance (SDA – formerly Service Facilitators) can do for individuals and families as well as what they can bill for.  Remember, the rules were changed so that families can decide whether or not to utilize SDA services.  See below the webinar (30 minutes) and the slides and FAQ.  I have been told the FAQ is being updated based on questions that SDA providers have about services.  The Arc is concerned that individuals and families be able to have flexibility to work with their SDA to determine what activities they want help with.  In addition, we are concerned that SDAs are able to bill for what they do so that families will continue to have this service as an option in Homebased.    If you have concerns, you can email me at

To listen to the webinar, click on this link:



From Smart Policy Works – Good Summary of the New 1115 Pilot Programs 

Because behavioral health needs are critical to many people with I/DD, it is important to pay attention to the models that they are implementing entirely on the mental health side of things as some people might be well suited to utilize them instead of the I/DD waiver and/or as we focus on expanding services for people who have a dual diagnosis, they might be models that can be expanded as well.

1115 behavioral waiver approved at last

As you may know, the Department of Healthcare and Family Services was notified on May 7 that its section 1115 Medicaid behavioral health waiver had finally been approved. The agency announced the program – called the Better Care Illinois Behavioral Health Initiative – the same day.

The waiver, in the works since early 2016, was designed to support Medicaid beneficiaries with substance use disorders (SUD) and mental health challenges while also reigning in the costs associated with their treatment. As proposal documents indicated, beneficiaries with behavioral needs account for almost 60% of the program’s spending.

Of the 10 pilots in the waiver, only SUD residential and inpatient treatment will start on July 1. This pilot will be statewide, and the state cannot institute annual enrollment limits.  Details and start dates for the other nine pilots have not been announced.

Better Care Illinois Behavioral Health Initiative’s 10 pilots:

● Residential and Inpatient Treatment for Individuals with SUD
● Clinically Managed Withdrawal Management Services
● SUD Case Management (diversion from the criminal justice system)
● Peer Recovery Support Services
● Crisis Intervention Services (ages 6-64 experiencing a psychiatric crisis)
● Evidence-based Home Visiting Services (mothers during 60 days postpartum whose newborn has withdrawal symptoms and children up to age 5 born with withdrawal symptoms)
● Assistance in Community Integration Services
● Supported Employment Services
● Intensive In-Home Services (ages 3-21)
● Respite Services (ages 3-21 whose families need reliefible)

The program would “help Illinois become a leader in integrating physical and behavioral health services for some of our most vulnerable residents,” said HFS Director Felicia Norwood. “We have an opportunity to transform lives and be better stewards of taxpayer resources.”

HFS 1115 waiver page
SPW’s September 2016 1115 waiver testimony

Waiver Advisory Committee – First Meeting May 23

This meeting may be important

It is the first meeting of the advisory council since CMS gave its long-awaited approval for Illinois’ 1115 Behavioral Health Transformation waiver. No agenda is posted as yet, but we can assume the meeting will cover the implementation and establish some parameters around the nine pilots that are yet to be finalized. It is important for community advocates to be present.

Meeting details

May 23, 2018 10:00-11:30 am

1st floor Conference Room – Bloom Building
HFS, 201 S. Grand Ave. East

7th Floor Large Conference Room
HFS, 401 S. Clinton St.


Groups Sue around Medicaid Issues – Arc Provides Affidavit on Issues

Chicago, IL—Attorneys on behalf of thousands of low-income people filed a motion in court on Wednesday to enforce federal law and the State of Illinois’ agreement to process Medicaid applications in a timely fashion. The attorneys charge that the State is violating both federal law and an Illinois court order by significantly delaying Medicaid applications and denying residents access to health coverage.

The motion, filed in U.S. District Court in Chicago, asks the court to enforce an existing consent decree that requires the State to determine eligibility for Medicaid within federal timelines, and to offer temporary medical assistance to people whose applications nonetheless pend beyond the federal time limits. The advocates allege the State is woefully behind on its processing and has not offered temporary medical assistance as a solution.  Click here for more information.

Access Living sues City of Chicago for three decades of discrimination against people with disabilities in Affordable Rental Housing Program

Complaint in Federal Court affects more than 650 developments, 50,000 housing units

May 14, 2018, CHICAGO – Access Living of Metropolitan Chicago, a Center for Independent Living (CIL) and advocate for people with disabilities, filed suit in the U.S. District Court for Northern District of Illinois, alleging the City of Chicago has funded and developed tens of thousands of affordable rental housing units without ensuring that a sufficient number are accessible to people with disabilities as required by federal law.

The action, which addresses the Affordable Rental Housing Program as a whole, involves the failure of city agencies, since 1988, to comply with the accessibility requirements of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and the Fair Housing Act (FHA). Due to the city’s actions, according to the complaint, “low-income people with disabilities struggle to find suitable housing and are often forced to live on the street, in their cars, in nursing homes, in homeless shelters, or in other inadequate and dangerous housing.”

Meg Cooch Signature

Meg Cooch
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)