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Happy Thanksgiving from The Arc of Illinois!

We are grateful for the supporters of The Arc of Illinois including: our team, our board of directors, our chapters and organizational affiliates, our funders, our sponsors, and our individual members. We hope that you are finding value in the information, training, and advocacy from The Arc of Illinois.

Wishing you a peaceful day of reflection on the joy of our journey, and an appreciation for the sorrows that have molded us into who we are. May you have much to be thankful for throughout this holiday season.

CILA Rates Calculator Implementation

Last week the Division of Developmental Disabilities met with members of the Ligas Rates Oversight Committee to present three potential Guidehouse CILA rate calculator implementation scenarios. All three scenarios result in a decrease in DSP hours, which is a decrease in system funding.

  • Scenario 1 includes full CILA rate calculator with implementation on January 1, 2024 (loss of 2.5 million DSP hours);
  • Scenario 2 includes full CILA rate calculator with the addition of the Guidehouse recommendation of the zero – hour staffing model with implementation on July 1, 2024 (net loss of 105,000 DSP hours, however, requires providers to hire DSPs to implement); and
  • Scenario 3 includes new staffing tables to be implemented January 1, 2024 (loss of 370,000 DSP hours) and the full CILA rate calculator implemented on July 1, 2024 (loss of an additional 2.5 million DSP hours). 

While the Division shared additional background and information on why the models pull hours out of the system instead of redistributing hours, Committee members maintain that there was not a shared understanding that implementation of the CILA rate calculator would result in a reduction of DSP hours to this magnitude. The Division plans re-engage with the Committee at the end of the month to allow time for Committee members to review these options and ask additional questions. 

Although we don’t yet have exact numbers to comprehend the individual level impact to this point, we do not anticipate that implementation of any of the three scenarios will have a positive result.  The Arc of IL will continue to monitor this situation closely. Stay tuned.

New CEO of The Arc of the United States Announced

The Arc of Illinois welcomes Katherine (Katy) Neas as the incoming CEO of The Arc of the United States beginning in January 2024. From the announcement, “Katy is a visionary leader who has devoted her career to disability rights, and she has deep connections in the field. She joins The Arc from the U.S. Department of Education, where she served as Deputy Assistant Secretary in the Office of Special Education and Rehabilitative Services. Prior to that role, she was Executive Vice President of Public Affairs for the American Physical Therapy Association (APTA) and for Easterseals. She is widely regarded for her bipartisan and collaborative work, earning her roles including Past Chair of the Consortium for Constituents with Disabilities (CCD). Earlier in her career, Katy served as Legislative Assistant to Senator Tom Harkin and the U.S. Senate Subcommittee on Disability Policy, where she worked on landmark legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Katy holds a B.A. from Georgetown University.” For more information, see full announcement here.

Public Policy Survey and Individual and Family Forums

Thanks to the nearly 500 individuals who completed the 2024 Public Policy Survey. We are analyzing the results and sharing with our Public Policy Committee which will make recommendations to our board of directors. Stay tuned for results!

Four opportunities remain to share your thoughts about IDD policy in Illinois with The Executive Director of The Arc of IL. Don’t miss your opportunity to make your needs known so that we can best advocate in Springfield.

No NOFO for ISCs

Last week, the Division of Developmental Disabilities announced that there will not be a Notice of Funding Opportunity (NOFO) for Independent Service Coordination Agencies in FY2025. From the announcement: “the Independent Service Coordination (ISC) Grant Program has received approval from the Governor’s Office of Management and Budget (GOMB) for an exception to the Notice of Funding Opportunity (NOFO) and Merit-Based Review (MBR) processes. This means, at this time, DDD will not release a FY25 NOFO for the ISC Grant Program and instead, all ISC agencies currently providing services in the 11 ISC regions will be offered the opportunity to sign a new grant agreement with DDD for the new Grant Program set to begin July 1, 2024 (FY2025).”


Welcome Vicki Borlin!

Vicki Borlin joined The Arc of IL on 11/13/23 as the Information and Outreach Specialist for the Southern Illinois region.  She is dedicated to helping families find resources that enable them to navigate the sometimes difficult world of raising a child with intellectual and/or developmental disabilities.  She holds has a public relations degree from the University of Central Missouri.  

She is also a 2023 UIC LEND (Leadership Education in Neurodevelopmental and related Disabilities) graduate. She has two children, one of whom has a genetic disorder, autism and special healthcare needs.  Raising a child with disabilities spurred her to become her daughter’s biggest advocate and has taught her how to keep fighting for what is best for her children.


Both the Illinois Senate and the House of Representatives have approved the amendatory veto for HB 2878, bringing about State Use Program changes. The bill was initially delayed by a veto pertaining to a different section. We are thrilled to have it pass both houses as the State Use Program aims to promote independence for individuals with disabilities by creating and providing employment opportunities.

Have any comments about possible legislation benefiting those with intellectual and developmental disabilities? Reach out to Sabrina at sabrina@thearcofil.org to share your thoughts!


Going Home Coalition

Going Home Coalition’s December meeting will be with Charles Wright, Acting Inspector General, Office of the Inspector General (OIG), on Monday, December 4th at 2:30 pm. Going Home Coalition participants will be asking questions about the investigation process of abuse and neglect within State Operated Developmental Centers and other community settings. Please email carole@thearcofil.org to be added to the Going Home Coalition email list to receive information about upcoming events.

Please email carole@thearcofil.org to receive an email invite to The Arc of Illinois and The Illinois Self Advocacy Alliance Fall 2023 VIRTUAL Regional Training: Self-Advocacy, Rights, and YOU! This presentation will be taking place on Tuesday, November 28, 2023 10:00 AM-1:30 PM.


The Arc of Illinois Virtual Events

  • Adapting The Holidays to Your Child with IDD | December 12, 2023 | 12:00 - 1:00 pm | Register


Individual and Family Forums In-Person Events

To Register, email or call:

training@thearcofil.org | 815-464-1832

  • Search, Inc | November 20, 2023 | 5:30 - 7:00 pm
  • Morton Public Library | November 29, 2023 | 6:00 - 7:30pm 
  • Carlos Cantu Children and Family Center | December 6, 2023 | 5:00 - 6:30 pm 
  • Cicero Community Center | December 16, 2023 | 10:00 - 11:30 am 

2024 Annual Convention Call for Speakers!

The Arc of Illinois has started planning for the 2024 Annual Convention to be held May 1 - 2, 2024. The Convention will be a hybrid event; some attendees in-person at the Marriott in Bloomington-Normal, and other attendees online. 

This year’s theme is “Advocacy for All”. We are looking forward to providing attendees with the latest information on many issues, including early childhood, transition from high school, employment, housing, and improving quality of life.

Click the button below for the call for proposal information.

Please submit no later than January 5, 2024.


RespectAbility Seeks Applicants for the Spring 2024 National Leadership Fellowship Program

All Fellowship Opportunities:

The Program is entirely online and designed for person with disabilities and allies. The deadline to apply is December 8, 2023. 


The Joseph P. Kennedy Jr. Foundation has announced its 2024 Public Policy Fellowship Program

The Foundation seeks an exemplary professional, a person experiencing disability, or a family member of someone with intellectual or developmental disabilities to serve as a 2024 Public Policy Fellow in Washington, DC. The Public Policy Fellowship is a one-year, full-time, intensive immersion experience.

The application deadline for the 2024 fellowship is December 10, 2023 by 5:00 P.M. EST. The announcement and application details may be found here:

Click here for the announcement and application details.


2023 National Survey on Health and Disability Winter Application Open! Virtual Coach: HealthMatters Program

We are pleased to announce that the Virtual Coach: HealthMatters Program application is open for WINTER 2024 enrollment. HealthMatters Program is an evidence-based 12-week health promotion program led by support staff and developed for and by the people with intellectual and developmental disability (IDD). Please see information below on program description, important dates, and how to apply to participate in this FREE program.

REGISTER for live Informational Webinar to be held on December 6th, 2023 (1-2pm CT)

To view online Application Instructions please click HERE.

DOWNLOAD PDF of Application Instructions.

The deadline to apply is January 12th, 2024, end of business day. Please read Application Instructions first and note training dates. Approved Organizations will be contacted by January 19th, 2024.


We are looking for Educational Surrogate Parents in the Chicago Area! 

Educational Surrogate Parents (ESP) provide support to students in the education system who are in the care of the state or who do not have a parent/guardian who can legally represent them in the educational setting. Your participation and advocacy would make a significant difference in the school experiences of children in your area – please consider participating. Click here for the flyer in English and here for the flyer in Spanish.

January 16, 2024, 9:00 – 4:00 p.m., English ESP, In-Person: Click here to Register for January 16

January 18, 2024, 9:00 – 4:00 p.m., Spanish ESP, In-Person: 
Click here to Register for January 18

January 23, 2024, 9:00 – 4:00 p.m. English ESP, In-Person: 
Click here to Register for January 23

January 25, 2024, 9:00 – 4:00 p.m. Spanish ESP, In-Person: 
Click here to Register for January 25


2023 National Survey on Health and Disability

The University of Kansas Institute for Health and Disability Policy Studies — funded by ACL's National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) — is seeking adults with disabilities to complete the 2023 National Survey on Health and Disability (NSHD). 

For more information, please call 855-556-6328 (Voice/TTY) or email healthsurvey@ku.edu. Participants may complete the survey by phone.


 The Arc of US Invites You to

Share Your Story to Help End Disability Discrimination in Health Care

Have You Ever:

  • Had a doctor discriminate against you or refuse to see you because of your disability?
  • Been unable to use medical equipment at doctors’ offices?
  • Had trouble accessing medical services because of your disability or gone without needed care?

Had your support person been excluded from your appointments?


The Arc of US Invites You to

Send a Message Now to Ask HHS to End Disability Discrimination in Healthcare

The US Department of Health and Human Services (HHS) is updating critical rules that address discrimination against people with disabilities in government-funded health care programs—and we have until November 13 to submit comments!


The Mindful Project is Recruiting Participants

The MindWalk project at the University of Illinois Chicago, which focuses on a Mindful Walking Intervention for Older South Asian Family Caregivers of People with Intellectual and/or Developmental Disabilities (IDD), is currently in need of participants. They are currently looking for South Asian family caregivers (50 years or older) caring for a person (of any age) with IDD like autism, Down syndrome, cerebral palsy & others who are interested in a mindful walking program.

Click here for the flyer.


University of Illinois (UIC) and Great Lakes ADA Center to hold focus groups in November about experience with civic engagement

Researchers at the University of Illinois Chicago (UIC), along with the Great Lakes ADA Center, would like to invite you to share about your experiences with civic engagement in your local community. We are looking to hold focus groups in November in order to gather information about people with disabilities’ experiences on advisory boards or committees that focus on improving city accessibility (such as improving sidewalks, public transit, and public spaces). 

Click here for the flyer.

If you are interested, please email the coordinator of this project, Odile Carroll, at ocarro2@uic.edu



The Illinois Autism Task Force (IATF) Transition sub-committee is seeking 
parents/guardians’ feedback on their understanding of the high school (Secondary) transition process. The survey is designed for parents/guardians of children with autism (all ages-young adults) who have an IEP.

The survey will be available beginning September 1, 2023, ending December 1, 2023:

IDHS: IATF: Transition Sub-Committee Survey 2023 (state.il.us)

IDHS: IATF: Encuesta del subcomité de transición 2023 (state.il.us)


University of Illinois Adults with Autism and Health Services Research Study

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under the Autism Intervention Research Network on Physical Health (AIR‐P) grant, UT2MC39440. 

Click here for the flyer. 


Are you, or do you know, a Spanish-speaking
family member of a person who uses AAC?/¿Usted es o conoce a un familiar hispanohablante de alguien que usa la CAA?

Researchers at the University of Illinois at Chicago are conducting a study
to learn about the experiences and perspectives of Spanish-speaking family
members of people who use augmentative-alternative communication (AAC).

Investigadores de la Universidad de Illinois en Chicago están realizando un
estudio para conocer las experiencias y perspectivas de los familiares
hispanohablantes de personas que utilizan la comunicación aumentativa y
alternativa (CAA). 

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