Illinois Provider Directory for Children, Youth, and Young Adults with Special Health Care Needs
The new Illinois Provider Directory for Children, Youth, and Young Adults with Special Health Care Needs is designed to connect individuals with special health care needs with skilled health care providers. This free online resource establishes a single source for locating information about providers who care for children, youth, and young adults with special health care needs. Included in this directory are listings for a range of health care providers, including pediatric and adult primary care providers, medical specialists, occupational and physical therapists, speech pathologists, mental health providers, dentists, and more. This tool is for Illinois families as well as for health care providers who are seeking to identify referrals for children, youth, and young adults with special health care needs. Sign up to be listed in the Illinois Provider Directory by visiting its Web site. Contact Liz Johnson, Provider Directory Coordinator with questions at LJohnson@illinoisaap.com or 312/ 733-1026 ext 210.
Article: Primary Care Initiatives Help Save State Medicaid Program Millions
An article in the American Academy of Family Physicians (AAFP) New Now highlights how incorporating concepts from two complementary programs that emphasize patient-centered primary care and chronic disease management to reduce costs and improve the quality of care, the Illinois state Medicaid program was able to save a total of $500 million in fiscal years 2008 and 2009.
Building Community-Based Medical Homes for Children Program Learning Session
The Building Community-Based Medical Homes for Children (BCMHP) Learning Session 1 was sponsored by ICAAP, the Division of Specialized Care for Children (DSCC), University of Illinois at Chicago, & the national AAP. The learning session was supported by a grant from the Michael Reese Health Trust, the Chicago Community Trust, and the Maternal and Child Health Bureau. The learning session was attended by invited medical home quality improvement teams from all over the state of Illinois. Led by Dr Jane Taylor, who presented a “Model for Practice Improvement and Testing Change", speakers presented on a number of topics. Available on the ICAAP Web site are videos of all eight presentations, including a parent-provider discussion panel, and documents made available to attendees of the learning session. Select from any of the links below, to skip to the section of your choice:
Video about Illinois Medicaid Program Highlights Medical Home
The Illinois Academy of Family Physicians put together a video for physician/practice outreach on Medicaid that highlights the Medical Home.
AAP: Community Pediatrics Grant Database
The Community Pediatrics Grant Database archives previously funded Community Pediatrics grant projects, including those funded through the CATCH Program, the Healthy Tomorrows Partnership for Children Program, the Community Pediatrics Training Initiative and the Healthy People 2010 Chapter Grants. The database is searchable by seven major categories: target population, health topic, state/territory, project activity, AAP program, AAP district, and project year. Members of the AAP can obtain grantee contact information by searching through the Member Center. If you are not an AAP member, but have questions please contact docbi@aap.org.
State Implementation Grant (D70) for Improving Systems of Services for Children and Youth with Special Health Care Needs (CYSHCN)
Illinois Chapter of the American Academy of Pediatrics - Abstract 
Grant Period: June 1, 2009 - May 31, 2012
Address: 1400 W. Hubbard St., Chicago, IL 60622-8195
Program Director: Kathleen E Sanabria
Phone: 312/733-1026 | E-mail: ksanabria@illinoisaap.net
Purpose: To implement the President’s New Freedom Initiative (NFI) by improving access to a quality, comprehensive, coordinated community-based system of services for CYSHCN and their families that are family-centered and culturally competent. The initiative supports grants to assist State Title V Children with Special Health Care Needs (CSHCN) programs, family organizations, providers, and other partners to implement the six core outcomes of a system of services based on evidence based practices for CYSHCN. These six core outcomes are as follows:
- Families partner in decision making and are satisfied with the services they receive;
- CYSHCN receive coordinated ongoing comprehensive care within a medical home;
- Families of CYSHCN have adequate private and/or public insurance to pay for the services they need;
- Children are screened early and continuously for special health care needs;
- Community-based service systems are organized so families can use them easily; and
- Youth with special health care needs receive the services necessary to make transitions to adult life, including adult health care, work, and independence.
Universal Newborn Hearing Screening and Intervention: Reducing Loss to Follow-up after Failure to Pass Newborn Hearing Screening (April 2008 – March 2011)
This grant will address Illinois’ challenges and improve short and long term outcomes for infants with hearing loss and their families. The goal of Illinois’ UNHS Program is to identify infants needing diagnosis by 1 month, achieve diagnosis by three months of age, and link those infants with hearing loss to treatment and intervention by six months of age. Activities such as technical assistance data monitoring, and inter-agency collaboration will continue and will support the use of the Plan-Do-Study-Act quality improvement activities which will be the primary focus of the grant. The quality improvement activities will focus on strengthening the links between newborn hearing screening, definitive diagnosis, early interventions, and connection to a Medical Home.
IMPACC Collaborative: Improving Access to Community Care for Individuals with ASD and DD (3 year grant announced Sept 2008)
The current proposal will enhance service capacity in Illinois for its population of persons with ASD and DD via provision of three regional Health Service Facilitators and a Financing Specialist, charged with expanding and strengthening linkages with The Autism Program (TAP) Service Network, comprised of 30 agencies and universities whose missions include system development and evidence-based service provision. Access to the medical home model is emphasized in grant-initiated activities.
Children's Health Insurance Program Reauthorization Act (CHIPRA) Grants
Illinois is a partner on one of 10 CHIPRA grants, representing single-state projects and multi-state collaborations, from HHS to improve health care quality and delivery systems for children enrolled in Medicaid and the Children's Health Insurance Program (CHIP). The money will help states implement and evaluate provider performance measures and utilize health information technologies such as pediatric electronic health records and other quality improvement initiatives.
American Academy of Pediatrics (AAP) Chapter - Illinois
Academy chapters are organized groups of pediatricians and other health care professionals working to achieve AAP goals in their communities. Chapters are the channels of representation for individual members of the Academy. Please contact your local chapter for additional state resources.
Scott Allen, MS,
Executive Director
Phone: 312/733-1909 or 312/733-1026 | Fax: 773/395-8190 | E-mail: sallen@illinoisaap.com
Kathy Sanabria, MBA, PMP,
Senior Director, Medical Home Initiatives
Phone: 312/733-1026, ext 208 | Fax: 312/773-1791 | E-mail: ksanabria@illinoisaap.com
American Academy of Family Physicians (AAFP) Chapter - Illinois
The American Academy of Family Physicians is one of the largest national medical organizations, representing more than 94,000 family physicians, family medicine residents, and medical students.
Family Voices Chapter - Illinois
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through a national network, they provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
Family-to-Family Health Information Centers (F2F HICs)
F2F HICs are non-profit organizations that help families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. F2F HICs are in a unique position to help families because they are typically staffed/run by parents of CYSHCN themselves, and as parents, they have traveled through the maze of services and programs designed to help CYSHCN. Staff at F2F HICs understand the issues that families face, provide advice, offer a multitude of resources, and tap into a network of other families and professionals for support and information. Family Voices, through the National Center for Family / Professional Partnerships, provides technical assistance, training, and connections to other F2F HICs and partnering organizations.
Arc of Illinois F2FHIEC
Address: 20901 South LaGrange Road #209 , Frankfort, IL 60423
Phone: 815/464-8247 | Fax: 815/464-5292 | Toll-Free: 866/931-1110
Primary Contact(s): Faye Manaster | Janet Donahue
Title V Block Grant to States
Title V of the Social Security Act is one of the largest Federal block grant programs. It leads the nation in ensuring the health of all mothers, infants, children, adolescents, and children with special health care needs (CSHCN). Title V is administered by the Maternal and Child Health Bureau (MCHB) as part of the Health Resources and Services Administration, U.S. Department of Health and Human Services.
MCH Contact
Myrtis Sullivan, MD, MPH, Associate Director for Family Health
Address: 1112 S. Wabash - 3rd Floor, Chicago, IL 60605
Phone: 312/793-4605 | Fax: 312/793-4666 | E-mail: Myrtis.Sullivan@illinois.gov
Web site
Title V and Children with Special Health Care Needs
MCHB Objective: Support development and implementation of comprehensive, culturally competent, coordinated systems of care for the estimated 18 million U.S. children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.
CSHCN Contact
Thomas Jerkovitz, Director of the Division of Specialized Care for Children
Address: 3135 Old Jacksonville Road, Springfield , IL 62704-6488
Phone: 217/558-2350 | Fax: 217/558-0773 |
E-mail: tfjerkov@uic.edu
Early Hearing Detection & Intervention (EHDI) Contact(s)
State EHDI programs promote universal newborn hearing screening, develop effective tracking and follow-up as a part of the public health system, promote appropriate and timely diagnosis of the hearing loss, prompt enrollment in appropriate Early Intervention, ensure a medical home for all newborns and strive to eliminate geographic and financial barriers to service access.
State Newborn Screening & Genetics Programs
Illinois Newborn Screening Program and Contact Information
From the National Newborn Screening and Genetics Resource Center Web site
Illinois Genetic Services and Contact Information
From the National Newborn Screening and Genetics Resource Center Web site
Newborn Screening and Genetics Collaborative – HRSA Region 4
Translating research into practical health care services and systems to improve the health and quality of life of individuals with heritable disorders through Collaboration and Partnership
Early Intervention/Part C Coordinator
The Program for Infants and Toddlers with Disabilities (Part C of IDEA) is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families.
Janet Gully, Chief
Phone: 217/782-1981 | Fax: 217/524-6248 | E-mail: dhsvr50@dhs.state.il.us
Web site
Section 619/Special Education for ages 3-5 Coordinators
This program provides free appropriate public education (FAPE) for children, ages 3 through 5 years, with disabilities:
Pam Reising-Rechner, Principal Consultant
Phone: 217/524-4835 | Fax: 217/785-7849 | E-mail: preising@isbe.net
Web site
State Interagency Coordinating Council (ICC) Chairs
The ICC advises appropriate agencies on the unmet needs in early childhood special education and early intervention programs for children with disabilities, assists in the development and implementation of policies that constitute a statewide system, and assists all appropriate agencies in achieving full participation, coordination, and cooperation for implementation of statewide system.
Beatrice Nichols, IICEI Chairperson/ Head Start Representative
Phone: 312/743-1635 | Fax: 312/743-0400 | E-mail: beatrice.nichols@cityofchicago.org
Marva Campbell-Pruitt and Elizabeth Hanselman, co-chairs
Web site
Medicaid
Medicaid is Title XIX of the Social Security Act and is a federal/state entitlement program that provides medical assistance to certain individuals and families with low incomes and/or special health care needs. Medicaid is of unique importance to children; together with the Children's Health Insurance Program, Medicaid insures over 1 in 4 children in the United States, with millions more eligible but currently unenrolled. The Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program is a critical component of Medicaid, which guarantees that children enrolled in Medicaid are screened for medical or developmental problems early, and that necessary treatments and services are provided.
Medicaid State Director
For the most updated contact, please refer to the National Association of State Medicaid Directors Member List.
State Waiver Information
Waivers are the result of a process that allows state Medicaid agencies to apply for and receive permission from HCFA to provide services not otherwise covered by Medicaid and/or to do so in ways not described by the Social Security Act. Most Medicaid managed care programs require Waivers. The Waivers, which can differ greatly, are known by their numbers (1115, 1119), or as home-and community-based, or as Katie Beckett Waivers.
Children's Health Insurance Program (CHIP)
CHIP is Title XXI of the Social Security Act and is a state and federal partnership that targets uninsured children and pregnant women in families with incomes too high to qualify for most state Medicaid programs, but often too low to afford private coverage. Within federal guidelines, each state determines the design of its individual CHIP program, including eligibility parameters, benefit packages, and administrative procedures. The Children's Health Insurance Program Reauthorization Act of 2009 (CHIPRA) reauthorized the program through FY 2013, and includes many incentives for states to find and enroll more eligible children in both Medicaid and CHIP. CHIPRA also includes a number of quality provisions that aim to monitor and improve care delivered through the Medicaid and CHIP programs. Each state does have a CHIP program, and the names of these programs differ from state to state.
Children’s Health Insurance State Program Director
For the most updated contact, please refer to the CMS listing of CHIP Directors. 
Community Health Centers in the State
Federally-funded health centers care for you, even if you have no health insurance. You pay what you can afford, based on your income. Health centers provide checkups when you're well, treatment when you're sick, complete care when you're pregnant, immunizations and checkups for your children, dental care and prescription drugs for your family, mental health and substance abuse care if you need it. For a listing of CHCs in Illinois, please use HRSA’s ‘Find A Health Center’ search engine.
Association of Maternal and Child Health Programs (AMCHP) Illinois State Profile
These state profiles provide a snapshot of how the Maternal and Child Health Block Grant works in specific states. The profiles detail the Federal funds appropriated to each state, state match, specific programs funded, numbers of people receiving services and state health needs.
AAP Issue Brief: Implementing the Medical Home in Medicaid, CHIP, and Multistakeholder Demonstration Programs
(AAP Member access only)
The Medical Home Issue Brief serves to provide guidance to AAP chapters working with states to implement medical home projects in Medicaid and CHIP as well as multipayer demonstration programs. It also addresses a number of the policy questions that frequently arise in creating state supports for the medical home.
Child Health Measurement Initiative (CAHMI) Medical Home Portal - Illinois State Profile
These state profiles provide a state’s medical home performance level for all children or children with special health care needs, based on national survey data.
National Adolescent Health Information Center (NAHIC) Adolescent Health Database
The NAHIC database includes national and state-level profiles of key measures of the health of adolescents and young adults, based on Healthy People 2010. Known as the Data Project, the online resource contains information on recent progress in key areas of adolescent health. National-level data is available by gender and race/ethnicity and also state-by-state, with summaries and data tables. The site also features information about data collection and presentation, state and national Excel files and guidance for using this data to improve the health of adolescents and young adults.
2010 KIDS COUNT Databook
The Annie E Casey Foundation has released the 2010 Kids Count report. The annual Kids Count report is a national and state-by-state profile of the well-being of America's children that seeks to enrich discussions concerning ways to secure better futures for all kids. The 2010 Kids Count report data is available as an interactive databook, a complete PDF-format report , and on request, in print. Data and rankings on 10 key indicators of child well-being are available by state, county, and city.
Illinois Chapter of the Americal Academy of Pediatrics (ICAAP)
Division of Specialized Care for Children (DSCC), University of Illinois at Chicago
Address: 3135 Old Jacksonville Road , Springfield, IL 62704-6488
Phone: 217/558-2340 | Fax: 217/558-0773
- Rita Klemm, MSW, DSCC Technical Assistance Unit, Medical Home Project Coordinator
E-mail: rkklemm@uic.edu
- Gerri Clark, RN, MSN, Associate Director
E-mail: geclark@uic.edu
- Robert Cook, BA, DSCC Family Liaison Specialist
E-mail: rjcook@uic.edu
- Donna Scherer, RN, MPH, Research & Development Coordinator
E-mail: dscherer@uic.edu
DSCC, the Illinois Title V agency for Children and Youth with Special Health Care Needs (CYSHCN), has been working to promote medical homes in Illinois since 2002. As the Title V agency in Illinois, the DSCC elected to support early medical home endeavors by providing trained facilitators to help primary care practices establish a medical home quality improvement team and begin making changes to improve care delivery. DSCC facilitators have been working with primary care practices since 2002 and many have made simple but significant strides in providing comprehensive, coordinated, accessible, culturally competent, continuous care for families and children with special health care needs. The following is a sample list of Title V facilitated Medical Home Quality Improvement (QI) teams in Illinois and a link to a brief narrative of each team’s improvement efforts:
DSCC provides presentations on the medical home model at local CATCH (Community Access to Child Health) meetings and at medical grand rounds upon request. These opportunities provide physicians and other interested health care providers with information about the state Title V program (DSCC), introduction to the medical home model, and a brief introduction to the Medical Home Index and Medical Home Family Index. A statewide network of pediatric specialists who will provide telephone consultation to community primary care physicians is also available throught DSCC. For physicians with limited experience in treatment planning for medically complex children, the consultants are available to provide consultation in the development and management of care for CYSHCN. Reimbursement for consultation services with these specialists may be available for DSCC approved medical home providers. Physicians interested in learning more about the benefits of providing a medical home for children with special health needs are urged to contact DSCC and arrange a free on-site inservice on the medical home model. With each medical practice inservice, 1-2 hours of free continuing medical education (CME) credit will be given for successful completion of the CME activity. The DSCC medical home team will provides 60-minute presentations for physicians and office staff as well as copies of the Medical Home Primer. Presentations can be arranged at your office upon request. To contact the DSCC medical home technical assistance team at 800/322-3722 or e-mail the team at dscc@uic.edu.
Illinois Medical Home Project
Illinois Campaign for Better Health Care (CBHC)
CBHC is a grassroots coalition of more than 300 local and statewide organizations representing consumers, health care workers and providers, community organizations, seniors, religious, labor, disability rights organizations and other citizens concerned about health care and wellness. CBHC was founded in 1989 on the belief that accessible, affordable, quality health care is a basic human right.
Illinois Maternal Child Health Coalition (IMCHC)
Recognizing that healthy infants, children, mothers and families constitute the basis of our society, the IMCHC is dedicated to promoting and improving their health and well being through advocacy, education, community empowerment and policy development. The activities of the Coalition address and support the fundamental principles of equity, social justice and fair access to care which are basic rights of all human beings. The Coalition's main objectives are directed to overcome critical barriers, such as poverty and racism, that prevent achievement of maternal and child wellness.
Shriners Hospitals for Children® — Chicago
Shriners Hospitals for Children® — Chicago is a 60-bed pediatric hospital, research and teaching center providing comprehensive medical, surgical and rehabilitative care to children with orthopaedic conditions, spinal cord injuries, and cleft lip and palate.
Voices for Illinois Children
Voices for Illinois Children champions the full development of every child in Illinois to assure the future well-being of everyone in the state. We work with families, communities and policymakers on all issues to help children grow up healthy, happy, safe, loved, and well educated. Voices for Illinois Children is a member of Voices for America's Children.
