The Family Advocate Program (FAP) provides broad outreach to adults and families throughout Illinois who are selected from the PUNS or notified in advance of a future PUNS selection. We connect you to the information you need to make smart, informed decisions for home and community-based funding and services, helping adults with intellectual and developmental disabilities live their fullest lives.
The Family Advocate Program is funded through a grant from the Illinois Department of Human Services.
Join Ashley Kjos, Manager of the Program Development Unit with the Division of Developmental Disabilities, as he explores the latest updates on the PUNS list, including key statistics, trends, and insights from recent bulletins.
Ashley has been with the State of Illinois since 2013. In June 2024, he joined the Program Development Unit within the Division of Developmental Disabilities. In his current role, he serves as Legislative Liaison, oversees PUNS data, and manages Appeals and Hearings. Ashley holds a degree in History and Political Science from Drake University. Outside of work, he enjoys reading, spending time with his wife and dog, and attending local events. Registration is required. Click HERE to register.
With a wealth of experience and understanding, we support you in navigating the adult developmental disabilities system, uncovering outside-the-box solutions and help you to avoid confusion at every step of the process.
Advise
No matter what stage you are in, our team will provide assistance plans for maximum success.
Prepare
Prepare for the pre-admission screening process with your Independent Service Coordination (ISC) agency.
Connect
Meet other families and build a broader support network through informative workshops and events.
FAs will support you in connecting to your Independent Service Coordination Agency, which is a key step in accessing adult disability services.
You must be an adult (18 and above) in Illinois, have an intellectual disability or other developmental disability, qualify for Medicaid Waiver services and:
Recently received an Early Notification letter or a PUNS selection letter? Join us to learn about your options under the Medicaid Home and Community-Based Waiver for Adults with Developmental Disabilities in Illinois. We will discuss service and support options, explore the role of your ISC, review the key steps you need to take to prepare for supports, and talk through common concerns and barriers. Registration is required.
Monthly Afternoon – 2nd Thursday
12:00 – 1:00 p.m.
Click here for event flyer
Zoom: Online Webinar
Monthly Evening – 3rd Tuesday
6:00 – 7:00 p.m.
Click here for event flyer
Zoom: Online Webinar
¿Recibió recientemente una carta de notificación temprana o una carta de selección de PUNS? Únase a nosotros para aprender sobre sus opciones bajo la Exención basada en el hogar y la comunidad de Medicaid para adultos con Discapacidades del desarrollo en Illinois. Discutiremos las opciones de servicio y soporte, exploraremos el rol de su ISC, revise los pasos clave que debe seguir para prepararse para los apoyos y analicepreocupaciones y barreras comunes.
Monthly – 2nd Miercoles
12:00 – 1:00 p.m.
Haga clic aquí para ver el folleto del evento.
Zoom: Seminario Web En Línea
CANTS & the New Rules A Q & A Session with ACES$ – July 12, 2024
Effective August 1, 2024, the Illinois Department of Children and Family Services (DCFS) will update its submission procedure for submitting Child Abuse and Neglect Tracking System (CANTS) forms. From that date forward, ACES$ can no longer submit the Authorization for Background Child Check, CANTS forms on behalf of Personal Support Workers (PSWs). If you need assistance, the Illinois DCFS has provided resources for you.
Family Advocate Program Children’s Know Your Options Webinar – July 18, 2024
Join us to learn about options available following a PUNS selection or Early Notification of an upcoming PUNS selection. We will discuss the Children’s Medicaid Home and Community Based Waiver, support services, and key preparatory steps. We will discuss how families have utilized funding to support their loved ones in building a full life in the community.
Family advocates work to empower individuals and their families with the information they need to make informed choices. We understand the system can be confusing, which is why we provide the necessary tools and connections to ensure you and your family get the support you deserve.
DHS 2021 Consumer Handbook on Home-based Services
Selecting a Community Day Service Program
Statewide List of CILA Providers
CQL Living Options
Learn What a Family Advocate Can Do For You
Planning for DD Services
Selecting a Self Direction Assistant
Flowchart From PUNS Enrollment to DD Waiver Services
The Family Advocate Program began as a pilot project in 2014 funded by the Illinois Department of Human Services in response to a need for consistent statewide information about waiver options for PUNS selectees after implementation of the Ligas Consent Decree in 2011. “Ligas” is the last name of the lead plaintiff, Stanley, a man living with Down syndrome, who sued the State to access a community-based, non-institutional living option. We offer information and support to those beginning the process to become eligible for the Medicaid waiver for adults with DD in Illinois so they may make informed choices.
We know how to help because we’ve been in your shoes. We are family members of individuals with developmental disabilities, and we understand the need for assistance in making informed choices about living and service options.
Together, we can direct you to the resources you need.
Ruth Aguilar has over fifteen years of combined experience advocating for people with disabilities. She holds a B.S Psychology from the Illinois Institute of Technology and Professional Graduate Studies in Non-Profit from Harvard University. Ruth’s professional experience stems from working previously in an ISC Agency and then as a Self-Directed Assistant serving the community with intellectual and developmental disabilities. Moreover, with her personal expertise as a mother of a teen girl with Rett Syndrome and Seizure Disorder, Ruth brings a wealth of knowledge to the families by assisting them in how to obtain services and understanding their options by being assertive, yet professional. Ruth is inspired by her husband and her daughter to be a servant leader who helps those around her without hesitation.
Shakari collaborates with organizations that focus on underserved communities and individuals with I/DD, among other duties. She keeps the team focused and in touch with diverse audiences, ensuring our materials are understandable.
Annie Bruno is the Family Advocate for Central & Southern Illinois. She holds a Master’s Degree from the University of Illinois in Social Work and is a Licensed Clinical Social Worker, as well as a Qualified Intellectual Disabilities Professional. Annie has over fifteen years of experience working with individuals with disabilities and their families. She has spent time as a Service Facilitator in the Home Based program and as an Independent Service Coordinator at an ISC agency. Annie has a background in consulting and is passionate about assisting families with navigating complex service systems and connecting to available resources.
Shirley A. Perez is the Program Director of The Arc of Illinois’ Family Advocate Program and the Family Support Network. Ms. Perez has thirty-five plus years of advocating and collaborating with individuals, and their families living with disabilities. She is a business graduate of Metropolitan Business College and Kaplan University. She operated her own business, served on the board of directors for a provider agency for over thirty years, worked at an Independent Service Coordination agency (ISC) where she advocated for and assisted families in locating services by navigating the Illinois State system. In conjunction with the City of Chicago, Federal Home Loan Bank and The Illinois Housing Development Authority, she implemented a home-buying program for individuals living with developmental and physical disabilities. She has worked as a Special Project Advocate with the Illinois Life Span Project; met with families/guardians to explain the transition process and listen to their concerns as their family members’ transition into the community from State Operated Developmental Centers.
She currently serves on various Illinois Department of Human Services Committees including the Quality Care Board of Directors. She is a member of The Arc of the United States (The Arc), an active volunteer in both her community and church. She is the proud mother of an adult daughter (Tamekia), who lives in the community. Ms. Perez’s lived experience and her passion for advocacy is fueled by her desire to assist her daughter and other individuals living with disabilities reach their full potential and live a full life in the community. Her philosophy is, “everyone can succeed with the right supports!” She can be contacted at shirley@thearcofil.org.
I have been working in the field, serving both children and adults living with intellectual disabilities and their families for over 26 years. My passion is to advocate for the individual’s needs as well as provide support to their families.
I am married and am the proud parent of 2 young adults, Serena and Ramon. My son blessed us with a granddaughter, Brooklyn, who is 4 years old and keeps our family on our toes!
I enjoy serving as a lector at Immaculate Conception-St Michael Church on the Southeast side of Chicago. I also serve as a volunteer, providing baptism preparation classes, co-facilitating, alongside my sister, Sandy. My faith and family are my joy!
See Additional Arc of Illinois Fact Sheets
Need help? The FAP team is here for you.
“Thank you, LFA so very much for taking time to share a wealth of information with me. I am just so happy that this process looks so very positive.
I can’t tell you how refreshing it is to know that there are individuals such as yourself that are very tenacious and have seen this project come to fruition. I am excited and am so looking forward to this opportunity opening up for my son.”
