New & Expectant Parent Guide
This guide was developed through a collaborative effort of the Prenatal & Postnatal Diagnosed Condition Awareness Workgroup.
The guide includes information on first steps to take, state and local disability organizations to connect with, and benefit programs that can help your child.
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Resources from the Guide
Thank you for using the New & Expectant Parent Guide. Below are all of the online resources referenced throughout this guide. Click any resource title to access it directly.
Genetic Counseling
Children's Mercy Genetics Clinic
Provides genetic evaluation, diagnosis, testing, and counseling for inherited conditions and chromosome disorders. The clinic includes board-certified clinical geneticists and genetic counselors who help individuals and families understand genetic test results and discuss next steps.
Early Intervention Services
Kansas Infant-Toddler Services (KSITS)
Provides developmental services for children from birth to age 3, including speech therapy, physical therapy, occupational therapy, developmental therapy, and family training and counseling.
Newly Diagnosed or Beginning the Diagnostic Journey
Kansas Special Health Care Needs (SHCN) Program
If your child has a diagnosis—or a suspected diagnosis—the SHCN Program can help you navigate the next steps. Care coordinators provide guidance, connect families with medical and community resources, and support care coordination throughout the diagnostic journey.
Early Childhood & School-Based Services
Kansas State Department of Education (KSDE) – Division of Learning Services
Provides information about early childhood special education services, preschool programming for children with intellectual and developmental disabilities (I/DD), and approved preschool at-risk programs.
Kansas Infant-Toddler Services (KSITS)
Find local early intervention programs and services for children from birth to age 3, including developmental supports and family resources.
Kansas Service Provider Directory
Find state and local disability service providers, including Community Developmental Disability Organizations (CDDOs), Centers for Independent Living (CILs), Aging and Disability Resource Centers (ADRCs), Area Agencies on Aging (AAAs), and other community support organizations.
Connecting with State or Local Disability-Specific Organizations
The Cystic Fibrosis Foundation
Supports individuals with cystic fibrosis and their families through education, advocacy, research, and access to care and treatment resources.
Down Syndrome Innovations (DSI)
Provides support, education, resources, and community connections to help individuals with Down syndrome and their families thrive throughout all stages of life.
Families Together, Inc.
Offers family-centered support, information, and advocacy for children and youth with disabilities or special health care needs. Services include assistance with early intervention, education, health care, transitions, and community resources.
Kansas Birth Equity Network (KBEN)
Connects families to education, advocacy, community resources, and culturally responsive support services to improve maternal and infant health outcomes.
Fragile X Syndrome KU Lab
Conducts research focused on improving the understanding of the experiences, needs, and successful transitions of individuals with Fragile X syndrome and their families across the lifespan.
Spina Bifida Association
Provides advocacy, education, research, community support, and resources for individuals with Spina bifida, their families, and health care professionals.
Kansas FASD Support Network, Inc.
Supports, educates, and advocates for individuals and families affected by fetal alcohol spectrum disorders (FASD). The organization also offers a resource guide and information on FASD-informed evaluation and treatment.
FASD United Family Navigator Program
Offers free, confidential support, information, and referrals for individuals with FASD, families, caregivers, and professionals. No referral is required.
Early Educational Opportunities
Kansas Infant-Toddler Services (KSITS) Local Program Directory
Find the Kansas Infant-Toddler Services program that serves your area. All Kansas infants and toddlers (birth to age 3) are eligible for a free developmental evaluation to determine eligibility for early intervention services
B.E. Smith Family Center
Offers therapy, early learning, and family support services for children with disabilities, developmental delays, conditions, or suspected diagnoses. Services include physical, occupational, speech, music, feeding, and aquatic therapies, as well as resources for new and expectant parents.
Parents as Teachers
Provides home visiting services, parenting education, developmental screenings, and family support from pregnancy through kindergarten entry.
Choosing a School Near You
Families Together, Inc. – Guide to Special Education (Chapter 9)
Provides guidance to help families understand special education services and choose educational programs that best meet their child's needs.
Access to Health Care & Disability Supports
KanCare (Kansas Medicaid)
Provides health coverage for eligible children and families, including access to Home and Community-Based Services (HCBS) waivers and other long-term supports. Children under age 19 may qualify even if they have private health insurance.
Children's Health Insurance Program (CHIP)
Provides low-cost health insurance coverage for eligible uninsured children under age 19 who do not qualify for Medicaid.
Kansas Special Health Care Needs (SHCN) Program
Provides specialized medical services and care coordination for eligible infants, children, and youth up to age 21 with qualifying medical conditions. The program also offers nutritional support for individuals diagnosed with phenylketonuria (PKU) or maple syrup urine disease (MSUD).
Specialty Clinics & Health Care Providers
Children's Mercy Hospital Specialty Clinics
Provides specialized evaluation, treatment, and coordinated care for children with a wide range of genetic conditions, developmental disabilities, chronic illnesses, and suspected diagnoses.
Kansas Newborn Screening Program – Hearing Screening Resources
Provides information and resources to help families access newborn and pediatric hearing screening services.
SPAN (Special Pediatric-to-Adult Needs)
A primary care program at AdventHealth Shawnee Mission for adolescents and adults (ages 16+) with chronic conditions or special health care needs that began in childhood. SPAN supports patients as they transition from pediatric to adult health care.
Access to Basic Needs
Women, Infants and Children (WIC)
Provides nutrition education, healthy foods, breastfeeding support, health screenings, and referrals for eligible pregnant and postpartum individuals, infants, and children under age 5.
2-1-1
211 connects you to the best resources and services in your community to meet your needs. Search the database on their website or dial 2-1-1 to speak with a trained referral specialist.
Family Preservation & Foster Care
Kansas Department for Children and Families (DCF)
Connects families with support services, including family preservation, respite care, crisis intervention, and other community resources during times of need.
Independence & Inclusion
Kansas ABLE Program
Allows eligible individuals whose disability began before age 26 to save for qualified disability-related expenses while maintaining eligibility for most means-tested federal benefits, such as Supplemental Security Income (SSI) and Medicaid.
Rural Kansas Resources
Families Together, Inc.
Provides family-centered support, advocacy, and assistance with early intervention, education, health care, transitions, and community resources for children and youth with disabilities or special health care needs. Services are available statewide, including for rural families.
Telehealth ROCKS
Supports access to pediatric care and school-based behavioral health services through telehealth, community partnerships, and family education, helping improve access to care in rural Kansas.