Don’t Miss Our Spring Events:

  • QIDP Conference – Jan 28, Alsip
  • Executive Leadership Conference – Feb 5-6, Lisle
  • The Arc of Illinois 70th Convention – April 22-23, Lisle

Check them out and more here

Importance Announcements from DDD

Please see below two notices from DDD.  One note about the additional $56.3 M the state is putting into the system to meet area minimum wage pressures and to address the DSP and frontline staff workforce crisis.  Although this is not as flexible as the 3.5% rate increase, DDD is not requiring a direct wage pass-through so the funds can be use for anything that might address the two above priorities.  Also note that CMS still must approve this funding so nothing will move before that.  

In the second communication below about a number of new things, I draw your attention to the language specifically about the Fire Marshall issues – make sure to note that: In all case the Department urges providers to wait for the results of their OSFM survey under the new regulations before moving forward, or requesting funding, for Home Modifications. 

In addition, please check out the opportunity to apply for the DD Advisory Committee.  DDD is looking for people with disabilities and families as well as service providers to serve.

Communication #1

Subject: January 2020, DDD Communication #2

Good Afternoon! It’s a big week for communications!


First, as you know, yesterday was the deadline for submission of the Provider Cost Survey to our contractor, Navigant.  I am pleased to report that as of midnight last night, we received over 100 surveys that represent providers from across the state and all parts of our service delivery system.  A big thank you to those of you who were able to complete the survey and get it in ahead of the deadline.  I was told this morning that many of the surveys just beat the buzzer last night, so I wanted to say that if any of you worked on the survey but couldn’t quite get it done in time, you can still submit it to Navigant (soon!).  The Navigant team will now begin analysis of the data received. Thank you!


In case you didn’t see the second Tribune article on DD service system, the link is below. A lot of work to be done:


I appreciate everyone’s patience as we finalized the Questions & Answer in regard to the minimum wage-related increase. An official Information Bulletin will come out once we receive approvals and are able to move forward. I wanted to send out the Q & A in advance so that providers can plan accordingly. Feel free to reach out to me for additional clarification or feedback.

How was the $13 per hour figure used in calculations?

  • Community Providers:  The 3.5% brought DSP wage components within the rate methodology up to $12.42 for City of Chicago providers, and $12.38 for the rest of the state. IDHS calculated the difference between $12.42/$12.38 and $13 on DSP wage components. This difference ($.58/$.62) was then applied to all frontline positions (RN, LPN, Supervisor, and QIDP).
  • ICF/DD Providers: We calculated the same percentage difference of the $.58/$.62 on ICF/DD frontline staff for ICF/DD settings (AIDE, Nurse, QIDP).

Is the $.58/$.62 and ICF/DD equivalent just on Direct Support Professional (DSP) wages?

  • No, all named frontline positions (DSP, RN, LPN, Supervisor, and QIDP for Community Providers and AIDE, Nurse, and QIDP for ICF/IDDs) in rate methodologies will receive this increase in reimbursement rates.

Will providers be required to pay DSPs $13 per hour in the community and ICF/DD?

  • IDHS expects providers to use the increase to meet area minimum wage pressures and to address the DSP and frontline staff workforce crisis.

What about MC/DDs?

  • MC/DDs will also receive the increase. HFS is responsible for the funding, management, and oversight of MC/DDs, independent of DDD. We expect formal communication directly from HFS on this issue.

Will ISCs also receive this increase on both their grant funding and rates?

  • ISCs will receive the increase on the frontline wage component of ISSA and Bogard Services.

Will all DDD grants receive this increase in both their grant funding and rates?

  • Only grants that are fee-for-service (87D and 89D) will receive the increase on the frontline wage components.

How did the State find $56.3M in current appropriations to increase reimbursements for community and ICF/DD AND MC/DD providers?

  • The $56.3M is the annual cost, going forward, for such increases.  Both IDHS and HFS have sufficient existing appropriation authority to cover the partial year funding for FY2020.

For ICF/DDs, will a regionalized wage adjustor/HSA multiplier be applied?

  • No. This increase is being implemented the same as the FY 18 $0.75 and the FY 19 $0.50 increase.

When will providers see this additional funding?

  • Community Providers: The waiver amendment was submitted to CMS. We are hopeful that the increase will be approved in the first quarter of calendar 2020.
  • ICF/DD Providers: The State hopes to have the date of this increase coincide with the approximate date for Community Providers.  The earliest an increase is possible is the first day of the quarter in which legislation, adopting the increase, is passed and signed, and a new State Plan Amendment (SPA) is filed.  The State intends to file necessary legislation in the 2020 spring legislative session.

Will this new increase be retroactive for the City of Chicago community providers and ICF/DDs to 7/1/19 since that is the date that the increased minimum wage took effect?

  • Community Providers: As a general matter, waiver amendments are not retroactive.  We anticipate this increase being approved in the first quarter of calendar 2020. 
  • ICF/DD Providers:  The earliest an increase is possible is the first day of the quarter in which legislation, adopting the increase, is passed and signed, and a new State Plan Amendment (SPA) is filed.  The State intends to file necessary legislation in the 2020 spring legislative session.  

Communication #2


Unfortunately, we have an issue with the Consolidated Accounting and Reporting System (CARS) which is used to pay our providers. Here is the official IDHS communication:

IDHS has learned that IDHS’s Consolidated Accounting and Reporting System (CARS), which is used to pay most of IDHS’s providers, is experiencing a technical problem. We expect it to be resolved this week.  As a result of the technical problem, however, some provider payments will be delayed.

IDHS and the State’s Department of Innovation and Technology have been working on repairs to CARS throughout the past weekend and a return to ordinary operations is expected this week. We will continue to update you on any new developments, particularly on our timeline for resolving this issue and processing payments.

Should any further unexpected delays arise, IDHS will be in direct communication with impacted providers. We are sorry and we thank you for your work on behalf of IDHS and the residents we serve.

Please contact Bobby Gilmore,, with questions or payment delay queries.


As we start the new year, we are also starting a new committee! I’m pleased to announce that I will be accepting applications for the newly created DD Advisory Committee. This should not be confused with the Regulatory Advisory Board which provides feedback on our rule making process. This committee will provide a venue for stakeholders, including individuals with I/DD, families, ISCs, providers, Associations and governmental staff, to provide advice and recommendations on the activities of the Division and the Illinois DD service system. Specifically:

  • Providing feedback on policy and processes that the Division is implementing.
  • Establishing smaller work-groups meant to create new policy, processes, training and/or other deliverables that will positively impact the service system. These work-groups will bring in additional individuals not currently seated on the Advisory Committee that can best inform the topic or work-group need.
  • Assisting the Division in obtaining feedback from individuals with I/DD in order to better inform services.

If you’re interested in representing the provider perspective on this committee, please reach out to Andrea Medley at for an application. Applications will be accepted through January 31st. I will do my best to have a broad representation of providers from across the state.

HERE IS ADDITIONAL Q&A following this info bulletin being sent out about the DD Advisory Committee:

  • How many participants are you seeking?
    • No more than 30 
  • What is the frequency of the meetings and attendance expectations?
    • Quarterly. Subcommittees may meet between meetings.
  • Will this group issue formal recommendations/responses, or is it intended to be discussion-based? I want this group to get work done!
    • I want it to be neither too formal (with no opportunity for direct input in the process) or too informal (nothing ever gets done). 
  • Is there a manageable subset of issues the Division would like to take on in 2020 that would be part of the Committee discussions (this helps us recommend participants).
    • Competitive integrated employment expansion & SELN recommendations
    • Policy updates/clarifications in rule, manual, policy, information bulletin, etc that are needed (for instance, we’re issuing an IB on AT & Home/Vehicle Mod later this week that resulted from realizing there is confusion over the process) as well as accompanying training  (we’re doing a webinar on the IB info with more information later in January/early February). I’m sure there are a number of issues that deserve review and clarification.
    • Quality – We’re rebuilding BQM and working on a new BQM Tool. There’s also personal plans and implementation strategies to to continue to refine.
    • AT Pilot – Once we actually get it going! Reviewing progress.
    • SB84 Recs – Reviewing those recs and follow up.


One of the challenges CILA providers face as we move more individuals into competitive integrated employment, is figuring out how to keep an individual’s assets under the $2,000 SSI asset cap. This is exactly where ABLE accounts can help. I was familiar with ABLE accounts and have seen the impact they have on individuals with I/DD who are working. They’ve been a great, relatively new opportunity, for individuals with I/DD as a savings vehicle that allows them to maintain their benefits.  I had a meeting last week with JJ Hanley, Director of IL ABLE, and am hopeful we can expand their use here in Illinois.  You can find more info here: Providers can help individuals, who are their own guardians, establish accounts. Presentations are available on how to support individuals to open an ABLE account. You can contact Rosemary Laudani at  to get started.


With the start of 2020, the Office of State Fire Marshal (OSFM) Life Safety Code changes go into effect.  We will be issuing an Information Bulletin this week with specific instructions. A couple of thoughts and reminder:

As providers take into account their plans for compliance, there may be an opportunity to receive financial assistance from the Division of Developmental Disabilities through its “Adaptive Equipment, Assistive Technology, Home and Vehicle Modification Request Process.” In order to aid in this process, an updated Information Bulletin is in its final edits and will be released soon.  The bulletin includes specific instructions for both sprinkler requests and replacement of existing windows to meet secondary emergency exit requirements. Reimbursement limits remain in effect including the maximum lifetime reimbursement of $15,000 per CILA site.  If you are unsure whether or not this $15,000 threshold has been utilized, please contact George Bengel at

We are also aware that there have been questions about rental sites and landlord cooperation.  The OSFM regulations do not distinguish between rental and ownership status. With that being said, individuals that own, rent, lease or otherwise control their own home are exempt from this requirement. Provider owned, rented, leased or otherwise controlled, are not exempt.

In all case the Department urges providers to wait for the results of their OSFM survey under the new regulations before moving forward, or requesting funding, for Home Modifications. 

While the OSFM will be surveying under the updated code, many providers have also asked for guidance on a timeframe for compliance with any deficiencies noted during the survey.  The normal 30-day window to come into compliance following a survey will be extended. In situations where compliance is expected to take an extended period of time, assessments will be done on a case by case basis.  The ability of a provider to demonstrate a plan for achieving compliance will be part of that case by case assessment. I hope this helps!

As always, feel free to reach out to me at

Seclusion and Restraint Discussions Continue 

The House Elementary & Secondary Education: School Curriculum & Policies Committee and the Senate Education Committee held a joint subject matter hearing on HB 3975 (Rep. Jonathan Carroll) and SB 2315 (Sen. Ann Gillespie) prohibiting schools from placing students in seclusion on January 7.  The discussion ranged from issues of training, accountability and the need for oversight and independent monitoring.  ISBE indicated they are creating a department for data collection and oversight and monitoring. 

The Arc has been a part of advocacy discussions about the proposed permanent rule around seclusion and restraint as well as possible legislative ideas.  We would expect a group will be meeting once session begins to talk about negotiations of one or more bills. 

We hope to share our comments on this issue by the end of January with comments due Feb 4.

Just as a reminder here are some of the news articles that have spurned this discussion.


Miscellaneous News: Presidential Forum on Disability Postponed

Elected for Inclusion: A Presidential Forum on Disability has been postponed due to the timing of the January Democratic presidential debate and other factors. The Arc remains committed to engaging candidates about issues of importance to people with disabilities, is grateful to all of the chapters and advocates who have been planning watch parties, and is looking forward to working together to make the forum a success when a new date is set. For more information, see the statement from organizers, the American Association of People with Disabilities and REV UP Texas.

Health: Appeals Court Rules Part of ACA Unconstitutional

On December 18, the Fifth U.S. Circuit Court of Appeals declared parts of the Affordable Care Act (ACA) unconstitutional and sent the case back to the lower court to determine which parts of the law will remain in effect. Many of the law’s most popular provisions are in jeopardy, including the protections for people with pre-existing conditions, allowing parents to cover their children until age 26, eliminating annual and lifetime limits on coverage, and other provisions. The ACA provides many critical protections for people with disabilities and The Arc will continue to support the law. Read The Arc’s statement.

Budget & Appropriations: Funding Bills for Remainder of FY 2020 Enacted; Low Income Tax Credits Not Included

All 12 Fiscal 2020 spending bills were passed by both chambers of Congress and signed by the President on December 20, the day the previous short-term funding bill was set to expire. The $1.3 trillion spending package included a few notable increases for disability related programs, though the majority were level funded or saw modest increases. The Lifespan Respite Act program received the largest percentage increase at 48%. See a comparison of disability-related program funding levels here.

In addition, the measure included several tax cuts totaling $426.3 billion over 10 years. This includes repeal of the Affordable Care Act’s (ACA) health insurance tax and medical device tax for businesses which benefit under the ACA. Unfortunately, it did not include any expansion of tax credits for low income people, namely the earned income tax credit (EITC) and the Child Tax Credit (CTC). The Arc advocated for expansion of these refundable tax credits, which benefit low income workers. Learn more.

Medicaid/LTSS: Congress Approves MFP Extension

Late last month, Congress approved and President Trump signed a five-month extension of the Money Follows the Person (MFP) Program as part of the Further Consolidated Appropriations Act, 2020 (H.R.1865). However, Congress did not approve a permanent reauthorization. MFP has helped more than 90,000 seniors and individuals with disabilities move out of nursing homes and institutions. Independent evaluations have shown that MFP improves the quality of life for individuals and has reduced Medicaid and Medicare expenditures by approximately 23%. Learn more about MFP here and read The Arc’s statement.

Family Support/Employment: Family Medical Leave Modernization Act Introduced in House and Senate

On December 17, Senators Dick Durbin (D-IL), Richard Blumenthal (D-CT), Tammy Duckworth (D-IL), Patrick Leahy (D-VT), Kamala Harris (D-CA), and Sherrod Brown (D-OH), and Representative Carolyn Maloney (D-NY) introduced the Family Medical Leave Modernization Act (S.3071/H.R.5456). This bill expands the Family and Medical Leave Act definition of family to include domestic partners, parents-in-law, aunts, uncles, siblings, adult children, grandparents, grandchildren, sons- or daughters-in-law, and other significant relationships. Furthermore, it guarantees that parents and other family caregivers can take time off to attend medical appointments or school functions, such as a parent-teacher conference, without a risk of losing their job. The Arc supports this legislation.

Family Support/Employment: President Signs Defense Bill Providing Paid Parental Leave for Federal Employees

On December 19, President Trump signed the National Defense Authorization Act of 2020 (S.1790), which includes a provision providing 12 weeks of paid parental leave for federal employees caring for newborns, newly adopted children, or foster children. However, the bill does not provide paid leave for personal medical issues or to care for a family member. Read The Arc’s statement.

Major Events Ahead

Health: House Subcommittee to Mark Up Medicaid Transportation Bill

On January 8, the House Energy and Commerce Committee Health Subcommittee will mark up seven bills, including the Protecting Patients Transportation to Care Act (H.R.3935). This bill clarifies that non-emergency medical transportation is a mandatory benefit under Medicaid. Visit the committee website for more information.

Education and Resources

Survey Ask 1:

We are inviting interested parents of youth with autism spectrum disorder (ASD) to participate in a research study testing the ASSIST (Advocating for Supports to Improve Service Transition) program. ASSIST aims to improve parents’ ability to advocate for adult services on behalf of their son or daughter with ASD. Please see flyer.

You may be eligible to participate in our study if you are the parent of a son/daughter with ASD who is between 16 and 26 years old. You must also have availability to attend a 12-week training program (a weekly 2-hour session after business hours).

This study will require a screening phone call, a packet of questionnaires, and one visit to our office at The Shaker Building in Oak Park (1100 Lake St.) for you and your son or daughter with ASD. During the lab visit, we will conduct a behavioral assessment with interviews and questionnaires with you and your son or daughter.

After that, we will invite parents to attend the ASSIST training or receive the ASSIST written materials (with the possibility of attending the in-person training at a later time). You will not be able to decide which group you are invited to; groups will be randomly assigned. Follow-up data will be collected from families over subsequent years. Study participation may last up to 3.5 years.

Parents can earn up to $325 for study participation, and participants with ASD can earn up to $100. If you would like to learn more about this study, please contact the study coordinator Molly Buren, PhD at or at (773) 290-9956. We are looking forward to hearing from you!

Survey Ask 2:

Title of the Project: Household Tasks and Parent Expectations for Employment

About the Project: Participants will complete an online questionnaire that should take about 20 minutes. Participants can also choose to take the questionnaire in a paper format that can be mailed to them with a self-addressed stamped return envelope included. We believe the information in this questionnaire will help to identify factors that influence engagement in household tasks and contemplate what schools can do to support parents in involving their adolescent and young adult children in household chores.

Potential Participants:  Parents should consider participating in this study if:

(a) They are the legal parent of a transition-aged youth (i.e. between the ages of 14-22) with intellectual disability, and  (b) their child currently lives with them.  

If parents meet the criteria for the study and choose to complete the questionnaire, they will have the option to participate in a drawing to receive one of twenty-five $20 Amazon gift cards.

If you have any questions about this study, please contact me at Parents are asked to email me to indicate their interest to receive a link to participate in the study or indicate their preference for a paper format of the questionnaire.

Thank you for your time and assistance in distributing the parent recruitment flyer!

Survey Ask 3:

Greetings!  My name is Kimberly Patton and I am a doctoral candidate in Special Education at the University of Illinois at Urbana-Champaign working under the advisement of Drs. Stacy Dymond and Meghan Burke. We are looking for participants for an exciting research project that focuses on the extent that individuals between the ages of 14-22 with intellectual disability are engaging in household tasks. Additionally, this study seeks to understand the relation between engagement in household tasks and parental expectations for employment outcomes.  We hope after reading the description of the study below that you will contact us if you would like to participate or if you have any questions. 

Title of the Project: Household Tasks and Parent Expectations for Employment

About the Project: As a participant, you will complete an online questionnaire that should take about 15 minutes.  If you would prefer to complete the questionnaire in a paper format, please let us know and we will send the questionnaire by mail with a self-addressed stamped return envelope. We believe the information in this questionnaire will help to identify factors that influence engagement in household tasks and contemplate what schools can do to support parents in involving their adolescent and young adult children in household chores.

Potential Participants:  Please consider participating in this study if:

(a) You are the legal parent of a transition-aged youth (i.e. between the ages of 14-22) with intellectual disability, and

(b) your child currently lives with you. 

If you choose to complete the questionnaire, you have the option to participate in a drawing to receive one of twenty-five $20 Amazon gift cards. This is optional and your enrollment into the drawing will not be linked to your questionnaire responses. 

If you are interested in participating in this study, please contact Kimberly Patton by email at and you will be sent a link to participate. If you prefer a paper format of the questionnaire, please indicate your preference along with a mailing address, and you will be mailed a paper version that includes a self-addressed stamped return envelope.


For Parents and Professionals, a workshop on

Supporting Individuals with a Demand Avoidance Profile of the Autism Spectrum

With PDA experts from the United Kingdom:

  • Laura Kerbey – Autism Consultant & Founder of ‘Positive Autism Support and Training’
  • Harry Thompson – Author of the best-selling book: “The PDA Paradox”

Two opportunities for training:

  • Thursday March 5th 9:00 – 4:00 UIC Institute on Disability and Human Development, Auditorium (First Floor), 1640 W. Roosevelt Road, Chicago, IL
  • Friday, March 6th 9:00 – 4:00 Holiday Inn 5300 W. Touhy Avenue, Skokie, IL

Laura will run the morning workshop which will help you:

  • Understand what PDA is and how it differs from other forms of autism;
  • Understand the impact PDA has on a child, teenager or young adult and how they can be supported;
  • Understand the reasons behind challenging behavior;
  • Employ strategies to minimize challenging behavior and support your child during times of crisis;

Harry will run the afternoon workshop and deliver his presentation: “PDA From the Inside”

Do you know an individual who doesn’t quite fit in the diagnosis of autism spectrum disorder but has similar traits?

Do you know an individual with challenging behavior who does not respond to traditional behavioral intervention including rewards and consequences?

Do you know an individual who avoids every day demands and even avoids things he or she enjoys?

Maybe that person has PDA!

Pathological Demand Avoidance (PDA) is a complex Autism Spectrum Disorder that is characterized by an anxiety driven need to be in control and avoid every day demands. Children and adults with PDA require a different approach than is typically used with individuals with Autism and Asperger’s Syndrome.

Sponsored by Diane Gould Therapy, LLC

For information and tickets:

Or visit

Co-Sponsored by the UIC Institute on Disability and Human Development through the Illinois Autism Awareness Grant

CEUs Available