In this section
Your clinic or inpatient team social worker can help you decide if your child will benefit from and/or is eligible for other family resources. Some of the resources that are available are listed below. See the Book, Video and Internet Resource section for additional web site address information.
- Supplemental Security Income (SSI) – Based on need, this program offers a grant and a medical assistance insurance card. The parents’ and child’s assets and parental income are reviewed to decide eligibility. Apply through your local Social Security Office or by calling 1-800-772-1213.
- Katie Beckett Program – A special eligibility process that allows children with long-term disabilities or complex medical needs, living at home with their families to obtain a medical assistance insurance card. Parent income and asset restrictions do not apply. For more information, call the national Katie Beckett Program at 1-800-362-3002. They will refer you the Katie Beckett consultant for your county.
- Medical Assistance Spend Down – Local county Health and Human Services offices are able to assist you in applying for medical assistance coverage if your child and/or family is not eligible for SSI or the Katie Beckett Program.
- Family Financial Support Program – This program offers information and help in finding service programs and community resources. There is limited funding to buy needed services or goods not covered by insurance or other sources. Call 1-800-773-5433.
- Women, Infants and Children (WIC) Program – This is a Special Supplemental Nutrition Program. It is meant to promote and maintain the health and well being of nutritionally at-risk pregnant, breastfeeding and postpartum women, infants and children.
- WIC provides supplemental nutritious foods, information and referrals for women and children who meet income guidelines and who would benefit from these services.
School and therapy
- Zero to Three Program – This is an early intervention program for infants and toddlers at risk for developmental delay. Evaluation and treatment services, often home based, are provided by or contracted with local county agencies.
- Individual Educational Plan (IEP) – Local school districts will develop an IEP for children who are medically and/or developmentally in need of special school services, after age 3.
Note: The websites listed, and information provided by these sites and their links is for educational purposes only. They are not a substitute for the advice of your doctor. Web sites should not be used for diagnostic or treatment purposes. For specific advice you should contact your doctor.
- Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)
- The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support (CHERUBS)
- The International Foundation for Functional Gastrointestinal Disorders (IFFGD)
- The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- Mealtime Notions, LLC.
- Family Voices
- WIC Program - Women, Infants and Children
- Birth to Three Program
- National Family Caregivers Association
- American Pediatric Surgical Nurses Association
- North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)
- American Society for Parenteral and Enteral Nutrition (ASPEN)
Wisconsin family resources
In addition to the previously mentioned resources, the following are provided as additional resources available to families living in Wisconsin.
- BadgerCare – BadgerCare is a program to provide health care coverage for uninsured families living in Wisconsin. If you think you might be eligible, call 1-800-362-3002.
- BadgerCare (for Wisconsin families) www.dhs.wisconsin.gov/badgercareplus/index.htm
- The Children and Youth with Special Health Care Needs Program– This program can help you by coordinating resources through your local public health department and other community agencies. They may also have videos and books about tube-feeding and oral eating issues. These regional centers are helpful in accessing information and assisting with referrals and follow up services.
- At Children’s Hospital of Wisconsin:
- Telephone: (800) 234-5437 or (414) 266-6333
- Web Site: www.southeastregionalcenter.org
- Wisconsin First Step – This is a statewide information and referral hotline serving Wisconsin families with children who have special healthcare needs. This free service provides information about programs and services in your area for children from birth to age 6. Visit their web site at http://www.mch-hotlines.org then link to Wisconsin First Step.
School and therapy
- CHW Schoolroom – If your child is admitted to Children’s Hospital of Wisconsin, school is offered in the classroom or at the bedside.
- A social worker – After your child gets their G-tube, a social worker can help arrange any changes needed with getting back to school.
- Transportation or mileage reimbursement – Transportation to medical appointments may be covered by medical assistance in your own state. Families may use a transportation company for services or they can request mileage reimbursement. Your social worker at the clinic or hospital can help you with this.
- Disabled Parking Permit – The Disabled Parking Identification Card is available to the parent of a child with a temporary or permanent disability. If your child is eligible, you can complete a form and have your healthcare provider sign it. The forms are available by calling your local Department of Motor Vehicles. Call 608-266-3041 or download the disabled parking pass.
Video: How to change your child’s G-tube
*Below is a video on how to change a G-tube. Only change your child’s tube if your child’s nurse or doctor told you to do so and if you were shown how to change the tube. If this is your child’s first G-tube, you should not change it.