Finding Accurate Medical Information
Learning that your child has been diagnosed with a respiratory disease or disorder can be frightening and stressful. One of the first things you can do is to learn about your child’s disease, whether it is asthma, cystic fibrosis, or something else. Here are some resources that you can rely on to give you accurate and up-to-date information.
- National Organization for Rare Diseases (NORD)
- National Institutes for Health (NIH)
- Healthy Children
- American Lung Association
- CDC Asthma
- Cystic Fibrosis Foundation
- UF Health Pediatric Pulmonary Clinic Education for Parents and Families
The Pediatric Pulmonary Diagnostic Laboratory at UF Health Shands Hospital is a state of the art facility that provides a wide spectrum of diagnostic testing for children of different age groups in order to diagnose different lung and airway diseases and to measure response to therapy. For help understanding the most common diagnostic tests your child’s doctor might order, please see our Diagnostics page linked below.
Take time to adjust to the new diagnosis. Living with chronic illness can be difficult. Parenting a child with a chronic illness can be challenging, stressful, and heartbreaking. Many parents wish that they could take their child’s pain and suffering on themselves – if only they could. Some diseases, like cystic fibrosis, will not be outgrown or cured. As a parent, you will need to find ways to cope with the daily stress of dealing with the disease.
Recharge your own batteries. Remember to take time every day to do something enjoyable – even if only for 5 minutes. Take a walk. Plant some flowers. Watch your guilty pleasure TV show. Meditate. Take a bubble bath. Go to the gym. Try to stay positive.
You work hard taking care of your child.
You are a hero.
Remember to take care of yourself too.
Tobacco Cessation Help
If you use tobacco products, one of the best things you can do for your child’s health (and your own) is to quit. Cigarette smoke can affect your child’s ability to breathe. This includes vaping or electronic cigarettes. Keep your child away from any sources of smoke – friends, family, and neighbors who smoke. Do not take them to public places where smoking is allowed. It is very important that your child lives in a smoke-free home.
It is important to understand what health insurance you have and what it covers. This is especially true if you are thinking of changing your plan. Health insurance laws change frequently. Your coverage may need to change too. Stay up-to-date on what your plan covers.
Keep the insurance card (or a duplicate) with the child – whether they are with the parents, family, or care provider – in case of emergencies. Always know the web address and phone number for your insurance company.
Call the 1-800 phone number if you are not sure if something is or is not covered. You can also appeal if you have treatment or medication denied. The 1-800 number will be on your insurance card.
Understanding Health Insurance
The Kaiser Family Foundation (KFF) is a reliable source for information. The following website is for anyone shopping for health coverage within the health insurance marketplaces. It has information in English and Spanish.
This government website has links to various resources and explains the Affordable Care Act (ACA). You can also find health care insurance directly through this website. It has information in English and Spanish.
COBRA gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events.
Medicaid provides health coverage to millions of Americans, including eligible low-income adults, children, pregnant women, elderly people, and people with disabilities. Each individual state directs their own Medicaid program but must follow federal guidelines. The cost for the program is shared by both state and federal governments.
Health Insurance Programs for Families and Children in Florida
There are several programs that provide health insurance coverage for children and teens in Florida. Your child’s medical needs and age will determine which program will be right for them.
Applications for Medicaid in Florida are made through the Department of Children and Families (DCF). Call the toll-free number (866) 762-2237
- Florida Department of Children and Families – ACCESS
- Medicaid Options: (888) 367-6554
- Florida Health Finder – Medicaid General Information
Florida KidCare is the Florida Children’s Health Insurance Program (CHIP). There are four different programs within KidCare, and they offer free, subsidized, and full-pay options based on family income and household size. Most families pay nothing at all, and many pay as little as just $15 or $20 a month for all children in the household. Families who do not qualify for free or subsidized coverage may purchase a competitively priced full-pay plan. Services include doctor visits, surgeries, school checkups, immunizations, vision & hearing, prescriptions, dental care, emergencies, and mental health.
- Medicaid for Children is for children from birth through age 18.
- MediKids is for children from 1-4 years old.
- Florida Healthy Kids is for children ages 5-18.
- Children’s Medical Services Managed Care Plan (CMS) is for children with special healthcare needs from birth through 18 years old.
- Florida KidCare website
- Children’s Health Coverage Programs in Florida
Services for Women and Children
The Special Supplemental Nutrition Program for Women, Infants, and Children, also known as WIC, is a federally funded program which provides the following at no cost to the participant: healthy foods, nutrition education, breastfeeding counseling and support and referrals for health care. This program can provide prescription formulas as well as vouchers for over-the-counter formulas, if your child needs it.
Healthy Start is a non-profit that assists pregnant women and new mothers of all backgrounds and income-levels. The goal of Healthy Start is to reduce infant mortality, reduce the number of low birth weight babies, and improve health and developmental outcomes. They have many resources on their website.
The federal Maternal, Infant and Early Childhood Home Visiting (MIECHV) program is being implemented in Florida through a public-private partnership. Led by the Florida Association of Healthy Start Coalitions, Inc., the goal of the initiative is to improve health and developmental outcomes for at-risk children through evidence-based home visiting programs.
The Florida Department of Revenue oversees child support if a court order is in place. If you are separated, divorced, or considering it, check out your rights on their website.
Childbirth Education, Breastfeeding, and Newborn Care Classes
Childbirth education classes are offered throughout the area. Here are some local Gainesville resources:
UF Health Classes and Seminars website
North Florida Regional Medical Center Parent Education Classes
Centering Pregnancy is group prenatal care bringing women due at the same time out of exam rooms and into a comfortable group setting. Moms engage in their care by taking their own weight and blood pressure and recording their own health data with private time with their provider for belly check.
UF Health is now offering a model of group prenatal care at its women’s centers to help reduce the risk of premature birth. Both UF Health Women’s Center – Medical Plaza and UF Health Women’s Center – Springhill offer the group prenatal care model.