Resources for Parents

When your child is having any kind of procedure or surgery that requires anesthesia, it’s understandable to be a little uneasy. You probably have plenty of questions about everything — from how the anesthesia is given, to what your child will experience, to where you’re allowed to be.

What happens will, of course, depend on the type of procedure your child is having and the kind of anesthesia that will be used, either:

• general — in which your child would be “asleep”
• regional — when one large area of the body is numbed
• local — when one small part of the body is numbed

To ease your mind and feel better informed, here’s a quick look at what may happen before, during, and after on the day of your child’s procedure at a hospital or surgery center.

Before Surgery

Although you might be able to talk to the anesthesiologist a day or two before the operation, you may not meet until that day. Either way, the anesthesiologist will go over your child’s medical history and information thoroughly, so that he or she can make the right choice of anesthetic medicines to meet your child’s individual needs.

The anesthesiologist also may order some tests (such as X-rays or blood or laboratory tests) to help figure out the best possible personalized anesthetic plan for your child.

Besides doing a physical examination of your child’s airways, heart, and lungs, the anesthesiologist will also want to get your child’s medical history, which will include asking about:

• your child’s current and past health
• your family’s health
• any medicines, supplements, or herbal remedies your child takes (consider bringing a list of exactly what your child takes, detailing how much and how often)
• any previous reactions your child or any blood relative has had to anesthesia
• any allergies (especially to foods, medicines, or latex) your child may have
• whether your child smokes, drinks alcohol, or takes recreational drugs (this usually applies to older teenagers)

The anesthesiologist, surgeon, or someone on the nursing staff will let you know whether your child can eat or drink before surgery. It’s important to make sure that your child doesn’t eat anything before surgery (usually nothing after midnight the day before the operation). You’ll get specific instructions based on your child’s age, medical condition, and the time of day of the procedure.

Why is eating before surgery an issue? Because the body normally has reflexes that prevent food from being aspirated (or inhaled) into the lungs when it’s swallowed or regurgitated (thrown up). But anesthetic medicines can suspend these reflexes, which could cause food to become inhaled into the lungs if there is vomiting or regurgitation under anesthesia. Sometimes, though, the anesthesiologist will say it’s OK to drink clear liquids or take specific medicines a few hours before surgery.

To ensure your child’s safety during the surgery, it’s extremely important to answer all of the anesthesiologist’s questions as honestly and thoroughly as possible. Things that may seem harmless could interact with or affect the anesthesia and how your child reacts to it.

Questions to Ask

You can also ask plenty of your own questions. If you don’t meet the anesthesiologist before the day of the operation, you may want to ask your doctor or surgeon these questions days, or even weeks, beforehand so you and your child can have all the answers you need:

• Am I allowed to be with my child before surgery? If so, for how long?
• Am I allowed to be with my child while the anesthesia is being given?
• What kind of anesthesia will my child be given?
• How will the anesthesia be administered — with an injection, through an IV, or with a breathing mask or tube in the throat?
• Will my child be sedated before the anesthesia is given?
• Approximately how long will the surgery take?
• Will my child still have an IV in or be hooked up to any monitors or equipment after the surgery is over?
• How long will it take my child to fully wake up from general anesthesia or feel the area if local or regional anesthesia was used?
• Will my child feel pain and/or discomfort (such as nausea or vomiting) after surgery? If so, how long will it last and what can be done about it?
• How soon after the surgery can I see my child?
• How soon after the surgery can my child eat, drink, go to school, or drive [if you have a teen]?
• How soon after the surgery can my child come home?

When you meet with the anesthesiologist, you’ll also be asked to sign an informed consent form, which authorizes the use of anesthesia. It’s important to make sure to have all of your questions answered before signing the form.

If your child is younger than 3 years old and is scheduled to receive general anesthesia or be under sedation for 3 hours or more, talk with the doctor or surgeon about possible risks related to brain development.

Just before going into the operating room and drifting off to sleep, young children may be given a special, sweet-tasting drink (that kids may call “silly medicine”). Depending on a child’s age or ability to cooperate, this “silly medicine” might be given by spraying it into the nose. The medicine is absorbed well through the stomach or nose and lets a child be sedated before going into the operating room.

For minor procedures, a sedative may not be needed. In fact, some children may prefer not to be sedated. Depending on what’s best for your child, the decision of whether or not to use sedation beforehand is made by the anesthesiologist, using your input.

In the Operating Room

If general anesthesia is used, the anesthesiologist will start transitioning your child from the normal awake state to the sleepy state of anesthesia. This is referred to as induction, which is usually done by either injecting medicine through an IV or by inhaling gases through a mask.

If, like many kids, your child is afraid of needles, the good news is that he or she may not have to get one while awake. Pediatric anesthesiologists often will begin the induction process by giving inhaled medicine. This is helpful because kids can have a hard time staying still and calm. The mask delivers medicine to make kids sleepy and help them relax before and during the surgery. That way, they’ll already be asleep when the IV is inserted for general anesthesia or when a shot is given to numb a certain part or area of the body for local or regional anesthesia.

When using general anesthesia, the anesthesiologist will monitor your child’s heart rate, blood pressure, breathing rate, and oxygen level; continue to deliver anesthesia; and keep your child as comfortable as possible throughout the operation.

To help your child breathe and/or to help deliver general anesthesia during the operation, the anesthesiologist may use an endotracheal tube (a plastic tube that’s placed into the windpipe through the mouth or nose) or laryngeal mask airway (LMA — a mask with a tube that fits into the back of the mouth).

After Surgery

Once the operation or procedure is over, the anesthesiologist will reverse the anesthesia process and help your child “wake up” (if your child received general anesthesia).

Your child will then be taken to the recovery room or PACU (post-anesthesia care unit). In the PACU, nurses and the anesthesiologist will monitor your child’s condition very closely to make sure he or she is making a smooth and comfortable transition from an anesthetized state to an awakened state.

When your child’s medical condition is stable, you’ll be asked to come to the PACU to be with him or her during the recovery period. If general anesthesia or sedation were used, don’t expect your child to be fully awake right away — it may take a while and he or she may doze off for a bit. It usually takes about 45 minutes to an hour for kids to recover completely from general anesthesia. In some cases, it may be a bit longer depending on medicines given during or after surgery.

Your child may feel groggy, confused, chilly, nauseated, scared, alarmed, or even sad while waking up. Depending on the procedure or surgery, your child may also have some pain and discomfort, which the anesthesiologist can relieve with medicines. After recovering from the anesthetic, your child will be evaluated to make sure he or she is ready for discharge from the recovery room.

For many outpatient procedures, kids are allowed to come home soon after the surgery. In cases where hospitalization is required, most hospitals allow at least one parent to stay with their child day and night.

Before you leave the hospital, you’ll get instructions for further care and recovery at home and for a follow-up visit with the surgeon. Talk to the surgeon and/or the anesthesiologist about what to expect after the surgery and how you can help your child be as comfortable as possible.

After discharge, call the hospital or surgeon’s office if you have any concerns at all about your child’s medical condition or if your child:

• has unusual bleeding from the surgical site
• has a fever higher than 101°F (38.3°C)
• has unusual redness on or discharge from the surgical site
• has unusual pain
• can’t keep anything down
• can’t take fluids by mouth

As you prepare for the surgery or procedure, it may help to remember that anesthesia is very safe. In today’s hospitals and surgery centers, highly trained professionals use a wide variety of modern medicines and monitoring technology to make sure that kids are stable and as comfortable as possible before, during, and after their procedure.

No doubt about it, getting an operation can be stressful for kids and adults alike. If your child is scheduled for surgery, you may have questions or concerns about anesthesia. The thought of your child being unconscious or temporarily losing sensation can be downright unnerving, whether your child is 7 months or 17 years old.

From a minor procedure with a shot to numb the area to a more serious surgery in which your child will be “asleep,” knowing the basics about anesthesia may help answer your questions and ease some concerns — both yours and your child’s.

About Anesthesia

Anesthesia is the use of medicine to prevent or reduce the feeling of pain or sensation during surgery or other painful procedures (such as getting stitches). Given as an injection or through inhaled gases or vapors, different types of anesthesia affect the nervous system in various ways by blocking nerve impulses and, therefore, pain.

In today’s hospitals and surgical centers, highly trained professionals use a wide variety of safe, modern medications and extremely capable monitoring technology. An anesthesiologist is a doctor who specializes in giving and managing anesthetics — the medicines that numb an area of the body or help a person fall asleep and stay asleep. A pediatric anesthesiologist has additional specialized training that certifies him or her to care for children.

In addition to giving anesthesia medicines in preparation for the surgery, the anesthesiologist will:

• monitor your child’s major body functions (such as breathing, heart rate and rhythm, body temperature, blood pressure, and blood oxygen levels) during surgery
• address any problems that might arise during surgery
• manage any pain your child may have after surgery
• keep your child as comfortable as possible before, during, and after surgery

Others who work with the anesthesiologist and surgeon — such as a specially trained certified registered nurse anesthetist (CRNA), fellow or resident physician, or student nurse anesthetist — may assist with giving your child anesthesia. CRNAs may work under the supervision of an anesthesiologist or on their own — it all depends on the state or hospital.

Types of Anesthesia

Anesthesia is broken down into three main categories: general, regional, and local. All of these can be given through various ways using medicines that affect the nervous system.

Think of the brain as a central computer that controls all the body’s functions and the nervous system as a network that relays messages back and forth from the brain to different parts of the body. It does this via the spinal cord, which runs from the brain down through the backbone and contains threadlike nerves that branch out to every organ and body part.

General anesthesia. The goal is to make and keep the patient completely unconscious (or “asleep”) during the operation, with no sensations, feeling of pain, awareness, movement, or memory of the surgery. General anesthesia can be given through an IV (which requires a needle stick into a vein, usually in the arm) or by inhaling gases or vapors.

Regional anesthesia. An anesthetic drug is injected near a cluster of nerves, numbing a larger area of the body (such as below the waist). Most children who receive regional anesthesia are deeply sedated or asleep for the procedure. Rarely, older kids or those who might be at risk by being asleep may be awake or lightly sedated for this type of anesthesia.

Local anesthesia. An anesthetic drug numbs only a small, specific part of the body (for example, a hand or patch of skin). Depending on the size of the area, local anesthesia can be given as a shot, spray, or ointment. With local anesthesia, a person may be awake, sedated, or asleep. Local anesthesia is often used for minor surgeries and outpatient procedures (when patients come in for an operation and can go home that same day). If your child is having surgery in a clinic or doctor’s office (such as the dentist or dermatologist), this is probably the type of anesthetic that will be used.

Anesthesiologists may also give children a sedative to help them feel sleepy or relaxed before giving a general, regional, or local anesthetic. Many kids are afraid of needles and may have a hard time staying still and calm, so doctors may need to help them relax first. That way, they just need to breathe themselves to sleep by inhaling into a mask. This approach helps ease some anxiety about needles and the overall procedure or surgery.

The type and amount of anesthesia will be specifically tailored to your child’s needs and will depend on various factors, including your child’s age and weight, the type and area of the surgery, any allergies your child may have, and your child’s current medical condition. You and your anesthesiologist can decide what’s best for your child.

Common Side Effects

Your child will most likely feel disoriented, groggy, and a little confused when waking up after surgery. Other common side effects, which should go away fairly quickly, include:

• nausea or vomiting, which usually can be eased with anti-nausea medication
• chills or shakiness
• sore throat (if a tube was used to help with breathing)

What Are the Risks?

Anesthesia today is very safe. In very rare cases, anesthesia can cause complications in children (such as strange heart rhythms, breathing problems, allergic reactions to medications, and even death). The risks depend on the kind of procedure, the condition of the patient, and the type of anesthesia used. Be sure to talk to your child’s doctor, surgeon, and/or anesthesiologist about any concerns.

If your child is younger than 3 years old and is scheduled to receive general anesthesia or be under sedation for 3 hours or more, talk with the doctor or surgeon about possible risks related to brain development.

Most complications can be prevented by giving the anesthesiologist complete information before the surgery, such as:

• your child’s current and past health (including diseases or conditions such as recent or current colds, or other issues such as snoring or depression)
• any medicines (prescription and over-the-counter), supplements, or herbal remedies your child is taking
• any allergies (especially to foods, medications, or latex) your child has
• whether your child smokes, drinks alcohol, or takes any recreational drugs (this usually applies to older teenagers)
• any previous reactions your child or any family member has had to anesthesia

To ensure your child’s safety during the surgery or procedure, it’s extremely important to answer all of the anesthesiologist’s questions as honestly and thoroughly as possible. Things that may seem harmless could affect how your child reacts to the anesthesia.

It’s also important that your child follow the doctor’s recommendations about what not to do before the surgery. Your child probably won’t be able to eat or drink (usually nothing after midnight the day before) and may need to stop taking herbal supplements or other medicines for a certain period of time before surgery.

The thought of surgery and anesthesia can be scary for parents and kids alike. But you can rest assured that the safety of anesthetic procedures has improved a lot over the years, thanks to advances in technology and the extensive training anesthesiologists receive.

The more informed, calm, and reassuring you are about the surgery and the safety of anesthesia, the easier the experience will be for both you and your child.

Not that long ago, doctors and nurses would write notes in a patient’s chart — often a sheaf of papers fastened to a clipboard — during an office visit. These notes then would be added to the patient’s ever-expanding medical file, which was physically stored on the premises. Until the digital age, there was no other way to store a patient’s medical record.

But that was then.

Today, more and more patients can expect to see computers instead of clipboards when they hop onto the exam-room table, thanks to the adoption of health information technology (HIT) by U.S. health care providers and hospitals.

These days, the majority of hospitals, doctors’ offices, and medical centers nationwide store health information electronically. Soon, all of them will, and the days of the clipboard will be done for good.

What Is an EHR?

An electronic health record (EHR), also called electronic medical record (EMR), is a computerized collection of a patient’s health details. But it’s more than just that — it’s a way of storing and organizing patient information. Like hospital charts, EHR patient files are divided into sections where health care providerys and staff can find the information they need to provide patient care or perform administrative tasks.

Information stored within an EHR can include a patient’s medical history (including immunization status, test results, and growth and development records), health insurance and billing information, and other health-related data.

Because it’s stored digitally, the information can be shared easily among a patient’s various health care providers within a facility, and can be sent quickly from one facility to another if a patient finds a new health provider.

How Is Information Accessed?

Most hospitals have their own unique EHR databases that are set up to be accessible from every computer. To open a patient’s health record, a doctor, nurse, or other health care provider would log in to the system with a username and password or thumbprint identification.

Often, providers can access information remotely (such as from an off-site computer) by logging in to their work’s network system via the Internet and accessing the EHR. Systems are directly accessible over the Internet, too.

What Are the Benefits?

Everyone knows the jokes about doctors’ unreadable handwriting. But the advantages of EHRs go way beyond issues of legibility. EHRs also can:

• Safely store data. Digital data storage helps to preserve health information. Every change that is made within an EHR is tracked along with the ID of the person who made it and the time. Pages cannot be removed from the record. With paper records, there’s always the chance they’ll get lost or misfiled or somehow damaged. Paper medical records for thousands of patients in Louisiana, Mississippi, and Alabama, for example, were destroyed by Hurricane Katrina in 2005 — and most of that information was never recovered.
• Prevent medical errors. Many medical errors are preventable by using EHRs. For example, some systems help doctors prescribe drugs by performing the correct calculations needed for drug dosages. They also monitor for and alert doctors of potentially harmful drug interactions, allergies, or possible allergic reactions. And patients can avoid getting extra X-rays or lab tests because each test result is recorded, stored, and easily referenced.
• Save time. More than one person can work on the record at the same time, so there’s less time waiting to hand off the record to another person. So a doctor can review test results while a nurse is entering vital signs and the billing office is submitting paperwork to an insurance provider through the system. Additionally, since prescriptions can be “e-prescribed” through the EHR and sent to a pharmacy directly, it saves patients time later on.
• Save space. Thanks to EHRs, huge file rooms may soon become a relic of the past. This valuable office space within the hospital can be converted into care-related areas — perhaps a few extra patient rooms or another imaging center.
• Empower patients. Parents can be active participants in their child’s care (or their own) when they have improved access to their medical files. That means they can view test results, review a provider’s instructions for home care, and even check for errors.

Is Patient Privacy Protected?

Yes. A federal law called the Health Insurance Portability and Accountability Act (HIPAA) identifies who’s allowed access to medical records. Specifically, HIPAA protects:

• any information that your doctors, nurses, or other health care providers put in the medical record
• conversations between doctors and others about your family’s care or treatment
• information about your family in the health insurance carrier’s computer system
• billing information

So you shouldn’t worry if, for example, your nosy neighbor happens to work in the same hospital where your child receives treatment. HIPAA bars anyone from snooping into patient records. And depending on the EHR system, attempts to access classified information might trip an alarm within the institution’s computer system and could be traced.

Also, in many EHR systems, hospital employees only have access to the parts of the EHR required to do their job. This helps keep the rest of the record secure and private. And after a user’s session has been inactive for a few minutes, the system may automatically log off to prevent others from viewing the information.

In addition, a provision of the law (called the Security Rule) specifically addresses the security of EHRs by establishing national standards for protecting certain health information that is stored or transferred in electronic form. Any provider who transmits health information electronically is required by law, for example, to have safeguards (hardware, software, etc.) in place to limit access to that information to those permitted to see it.

Can I Access My Child’s Files?

Yes. Just like with old-fashioned paper charts, you have the right to view your child’s medical information. Not all health care facilities provide ways for patients and their families to log in to the system, but many do.

If your health care provider offers this service, ask what’s required of you. You’ll probably need to register into the system and provide a username and password. Things like your child’s medical history, family history, allergies, and prescription medications will be viewable, but any physician notes, test results that haven’t been reviewed, and most psychiatric evaluations will be hidden. And, if your child is a teenager, it’s likely that more areas will be hidden to protect your teen’s privacy.

If your health care facility does not yet offer access to EHRs, you still can request a paper or digital (CD or flash drive) copy of the file. Digital copies can be stored on software known as a Personal Health Record (PHR), either on your home computer or online. Some online PHRs are free, while others have initial setup fees and monthly maintenance costs.

With these accounts, you’ll be responsible for keeping your records up to date. While this may take some work, it’s a good way to make sure that all of your child’s medical information is in one place. Patient-owned records are especially useful for managing the care of kids with chronic conditions and those who receive care at multiple institutions.

As friends worry out loud about how they’ll pay for their kids’ college education, the parents of children with special needs have worries that extend beyond the few years it takes to get a college degree:

• How will we pay for the special therapies our child needs now?
• Who will pay our child’s expenses once he or she becomes an adult?
• Where will our child live and who will oversee his or her care after we’re gone?

These questions and fears might stop you in your tracks. But financial planners say that creating a plan can ease anxiety. Some of the issues you need to confront are financial: How do you set aside money for your child without affecting his or her government benefits? And some are emotional: Who would understand your child’s needs if something were to happen to you right now?

Here are 10 steps to planning your child’s financial future. Some are simple, some are challenging; some cost nothing and some require paying legal fees. Get started on some of these now, so you’ll have peace of mind down the road.

1. Create a Special Needs Trust

A special needs trust is the most important part of your child’s long-term financial plan. This is where you can put money that you save, that others give your child as gifts, or that you receive from an insurance settlement without worrying that these funds will interfere with your child’s eligibility for federal benefits like Medicaid and Supplemental Security Income (SSI).

Even if you’re unable to pay into a trust right now, set one up anyway. This way, you can make the trust the beneficiary of your life insurance policy and your estate, ensuring that those assets don’t get passed to your child when you die. Why wouldn’t you want your child to be the beneficiary of your estate? Because showing more than $2,000 in assets could make your child ineligible for federal benefits such as SSI.

2. Write a Will

A will specifies what will be done with your assets after your death. By writing a will, you make sure that your assets are left to the special needs trust and not to your child. Without a will, a probate court judge could name your child as a beneficiary, which could make your child ineligible for federal benefits (see above). The will is also where you can specify a guardian who will take care of your child.

When you have a child with special needs, a will should not be a do-it-yourself endeavor. Hire a lawyer who works specifically for people with special needs and is aware of your state’s disability laws. Once the documents are drafted, have your lawyer keep one and then give copies to any executors or guardians named in the will.

Costs for this legal paperwork, including the will, trust, and powers of attorney, start at $1,500 and go higher depending on where you live. Contact the Academy of Special Needs Planners or the Special Needs Alliance for a referral to an attorney in your state.

3. Name a Guardian

A guardian is the person who will care for your child if you were to die before he or she becomes an adult. In choosing this person, consider how much time you now spend tending to your child’s needs. Who can handle that type of commitment? Who has bonded with your child? Who has the patience, understanding, and other personality traits necessary to deal with the day-to-day responsibilities of raising your child?

Once you pick someone, ask the person if he or she can and will accept that responsibility (even though you hope it will never be necessary). And talk about how this commitment will likely stretch beyond when your child turns 18.

4. Name a Trustee

A trustee is the person who will be responsible for managing the special needs trust after your death. It can be a family member, a friend, an independent professional trustee, or even a bank or lawyer. The trustee ensures that the money in the trust is spent only on your child with special needs and only on services that you’ve specified or that are appropriate to your child’s needs. The trustee also supervises how the money in the trust is invested. The person who is caring for your son or daughter (the guardian) cannot spend any money in the trust without the trustee’s approval.

And a word on trustees and guardians: They often are not the same person, and some financial advisors recommend that they never be the same person. By separating these roles, you ensure a “checks and balances” system for your child’s future needs.

5. Build Your Savings

Parents of children with special needs quickly learn that just because a child needs a certain treatment or therapy doesn’t mean that your school system will offer it or insurance will cover it. This is where personal savings become so important. Start putting aside whatever you can each month — no amount is too small — to cover these extra expenses. Just make sure you never put this money in your child’s name.

Savings also can help pay for a special needs advocate, an expert in special education who can help you navigate the paperwork, programs, and laws that affect what services your child qualifies for. Special needs advocates can save parents money in the long run by using their expertise to ensure that kids get all the services they’re entitled to from their local school district.

To find an advocate in your area, ask other parents for recommendations or contact your local school district, organizations focused on your child’s disability, or local colleges with special needs programs for a referral.

6. Write a Letter of Intent

Preparing for your child’s financial future is important. But hand-in-hand with that is making sure that your child’s everyday needs will be met should anything happen to you. That’s where a Letter of Intent comes in. Is your child’s daily routine very important? Write it down and be as detailed as possible. The same goes for your child’s daily, weekly, and monthly schedules. Also include things that your child likes and dislikes, and helpful resources in the community.

Create a list of contact information for your child’s physicians, therapists, and other medical support people as well as current medications and their dosages and schedules. Are there people you don’t want around your child or activities to be avoided? Write that down too.

And then once a year, update the letter. This is not a formal legal document, so you can draft it yourself. Keep a copy wherever you have copies of your will. And make sure that your child’s appointed guardian has a copy too.

7. Plan for Your Child’s Independence

When your child is about 16, start thinking about where he or she will live as an adult. In most states, people with special needs are 21 or 22 years old when they become ineligible for education services through the local public school system.

So start thinking: Will your child remain living with you? If so, will support personnel be needed during the day when he or she used to be at school? Are day programs for adults with special needs available in your area? If independent living is the goal, start investigating options in your community such as shared living, group homes, or apartments. Once you find a place you like, get on the waiting list if there is one.

8. Apply for Guardianship or Power of Attorney

Once children turn 18, they’re considered adults in the eyes of the law. This gives your child the right to make medical and financial decisions. If he or she is not capable of this or needs your guidance, consider assuming legal guardianship or the less-restrictive power of attorney and health care proxy for his or her financial, legal, and health care affairs. This way you maintain the same supervision and control you had over these as you did when your daughter or son was younger.

Experts advise parents to hire an attorney to help with this process. This will ensure that you have all the powers you would need to assume control of your adult child’s health care in the event of an emergency. If your child cannot or won’t consent to you assuming power of attorney, the matter will likely be decided before a probate court judge.

9. Educate Family Members

Grandparents, aunts, uncles, and other loved ones might want to help out with expenses. But explain to them the importance of not putting anything in your child’s name. Have a family meeting and explain why grandpa can’t leave anything to your child in his will or name your child beneficiary on his life insurance policy. The same goes for gifts of savings bonds, stocks, or cash: nothing should ever be in your child’s name.

And if your son or daughter will not attend college, there is no need for a 529 savings plan. Those funds can only be used for post-secondary education, not private schools, tutoring, or therapies needed before age 18.

If loved ones want to leave something to your child, they can. But tell them to name the special needs trust as the beneficiary to ensure that your child holds no assets of his or her own.

10. Need Help? Find an Advisor

If all of this is too overwhelming, a certified financial planner or special needs financial planner can help. Ask your human resources department if your company offers this service as part of your benefits package. Or check the Academy of Special Needs Planners or Special Needs Alliance websites for a referral to a professional in your area.

The Affordable Care Act can help some uninsured people with low incomes, pre-existing medical conditions, or seniors finally find affordable health care coverage. But can these laws benefit my kids?
– Elisa

There’s some confusion around these laws, so it’s important to learn as much as you can about the rules and benefits. That way, you can make the best decision for your family when it comes to choosing health care coverage.

The laws, which were passed through The Patient Protection and Affordable Care Act — sometimes referred to as Obamacare — may help people who have no health insurance or who would like more choices when it comes to affording health care.

That means that if you are currently happy with your insurance plan and your kids are covered, there’s nothing you need to do. Your kids can stay on your insurance plan. And they will get some added perks, including the benefit of staying on your plan until they are 26 years old.

If you and your kids are not insured, will be dropped from coverage soon, or are unhappy with your current coverage, some other options might be available to you. First, the majority of kids from low- or middle-income families will continue to qualify for free or low-cost health care through universal Medicaid and/or the state-run Children’s Health Insurance Program (CHIP). These programs have been in effect for years and will continue to provide benefits.

But through the Affordable Care Act many privately run health insurance companies now offer similar benefits to parents and kids. These benefits include:

• Free preventive services, such as immunizations; screening tests for conditions like autism, obesity, depression, and hearing problems; iron and other vitamin supplements for kids with deficiencies; drug counseling; and more. Certain uninsured pregnant women also may benefit from preventive services.
• Additional health benefits, which include ambulatory and ER care, hospital stays, maternity and newborn care, mental health and substance abuse services, prescription drug plans, rehabilitative care, and lab work. Dental and vision care is covered until a child reaches age 19.
• Medical, dental, and vision coverage for a child under age 19, even if he or she has a disability or pre-existing medical condition like diabetes or asthma.
• Coverage under a parent’s plan until an adult child is 26. Adult children under age 30 who outgrow this service and are uninsured may qualify for what’s called “catastrophic insurance” — insurance that helps minimize the cost of medical care for those on limited incomes.

It’s important to note that not all uninsured parents will qualify for these plans, but most children will. And insurance companies can’t set lifetime caps on coverage, which previously could mean that sick kids lost benefits when they needed them the most.

Find out if your family is eligible for a plan by visiting the virtual health insurance marketplace at HealthCare.gov. This government service and its website make it easy to apply for insurance and learn which programs are available in your area. By just filling out one application form, the marketplace allows you to compare and contrast the benefits of each plan, as well as compare out-of-pocket expenses like co-pays and deductibles for care.

If your child is lacking health care services, there’s a good chance that he or she will qualify under the current health care rules. Visit the virtual health insurance marketplace and see what health care benefits may be available to your family.

Have questions? Call 1-800-318-2596 or visit https://localhelp.healthcare.gov/ to find a health insurance counselor in your area who can help.

Many kids in the United States aren’t covered by health insurance, or are covered by plans with high deductibles and limited benefits.

If your kids are among them because you can’t afford adequate coverage or your employer-sponsored plan doesn’t cover everything, don’t despair. Programs are available that provide affordable — even free — medical care and are designed to meet or supplement a person’s medical insurance needs.

Your kids could be eligible for coverage right now and you might not know it. Here are some options that may be available to your family.

Enroll Your Child in a Public Program

Two public programs work together in every state to provide health coverage for children in low- and middle-income families: Medicaid and Children’s Health Insurance Program (CHIP).

Medicaid is run by states with a mix of state and federal funding. It offers health coverage for those with limited incomes, including children and parents, pregnant women, those with disabilities, and seniors. And kids might be eligible for coverage if they’re U.S. citizens or lawfully admitted immigrants, even if their parents are not.

CHIP is a program funded by the federal government that each state administers. It provides health coverage for American kids under age 19 in working families who qualify based on their parents’ income. CHIP is often helpful for families with incomes too high for Medicaid, but who are still having a hard time affording health insurance.

Each state has different CHIP rules. Some CHIP programs, for example, cover pregnant women as well as parents and related caregivers (such as grandparents raising their grandchildren). Each state has its own name for its CHIP and children’s Medicaid programs, too (for instance, the CHIP program in Delaware is called Delaware Healthy Children Program; in Connecticut, it’s called the Husky Plan).

To learn about your state’s CHIP and Medicaid programs and other services available to your family, visit InsureKidsNow.gov or HealthCare.gov. There, you can apply for CHIP or Medicaid online. You also can call 1-877-KIDS NOW (1-877-543-7669) to find out about the CHIP program in your state.

A child’s eligibility for these government programs is based on household income. Once your child is enrolled, you’ll receive a list of medical providers near you who accept CHIP/Medicaid patients. You can then make appointments with those providers any time your child needs to see a doctor and also be covered in case of an emergency.

Find a Private Insurer

The majority of kids from low- or middle-income families will qualify for free or low-cost health care through Medicaid and/or CHIP. But now, through the Patient Protection and Affordable Care Act, many privately run health insurance companies will offer similar benefits.

You can find out if your family is eligible for a plan by visiting the virtual health insurance marketplace at HealthCare.gov. This government service and its website make it easy to apply for insurance and learn which programs are available in your area. By just filling out one application form, the marketplace allows you to compare and contrast the benefits of each plan, as well as compare out-of-pocket expenses like co-pays and deductibles for care.

Visit a Local Community Health Center

A federally funded community health center is another option for low-cost medical care for your kids. You can take your kids there for checkups, immunizations, treatment when they’re sick, dental care, prescription drugs, and mental health care.

You also can go there for complete care yourself, including when you’re pregnant and for substance abuse care if you need it.

These centers tend to offer medical care on a sliding scale based on your income. Depending on your situation, it could be free. These centers can help you get health insurance and usually will accept that insurance once you are enrolled.

To find one near you, visit the Department of Health & Human Services (DHHS) health center page and enter your zip code under “Find a Health Center.” Check the website of the center near you about services, costs, and hours and call ahead for an appointment. Some community clinics are only open on certain days or for limited times.

Rural health centers, which are similar to federally funded community health centers, serve families in rural areas. You can find one in your state by visiting the Centers for Medicare and Medicaid Services website.

Also, visit the National Association of Free and Charitable Clinics’ website to find a free or low-cost clinic. The U.S. has more than 1,200 free clinics, which are staffed by a volunteer workforce of doctors, dentists, nurses, therapists, pharmacists, nurse practitioners, technicians, and other health care professionals.

You also might know about urgent-care centers, which are different from community health centers, rural health centers, and free clinics. These centers are designed for people who need care right away or when their doctors aren’t in the office. They can be expensive and might not take some types of insurance. Be sure to check with your insurance company before going to one of these.

Talk Dollars With Your Doctors

If your kids don’t qualify for a public program (such as Medicaid or CHIP), they need services that aren’t covered by your insurance, or you have a high deductible, you can try negotiating a reduced, cash-paying rate with your pediatrician before getting services. Cutting deals with doctors is done more often than you might think.

Start by asking: “Do you accept patients on a fee-for-service basis?” If your insurance has a high deductible, consider yourself a self-paying patient until that deductible is met. So, your discussion about money with your doctor might begin like this: “I’m going to have to pay 20% of the cost of that procedure and I can’t afford it” or “that’s not covered by my insurance.” Talking dollars can be helpful because the doctor might be able to suggest less expensive treatments.

And don’t be afraid to shop around for a doctor who can provide care at the lowest price. If specialist A agrees to do a certain type of surgery for $2,000, for example, and surgeon B can do it for $1,500, you’ll save $500 by going to doctor B. But be sure that you’re never compromising the quality of your child’s health care for cost. When comparing rates, look for providers who’ve been referred by your doctor or another source you trust.

For suggested self-pay rates on a variety of medical services, visit Health Care Bluebook’s website.

Because each provider typically receives payment separately, be prepared to negotiate with each provider your child sees. If the procedure you’re discussing for your child requires general anesthesia, for example, be sure to ask the surgeon which anesthesiologist she works with and contact that doctor, too, to negotiate a cash-paying price for his services. And don’t forget to ask if there’s a facility fee for where the surgery takes place — and negotiate that, too.

Find a Safety-Net Hospital

In 1946 Congress passed the Hill-Burton Act, which gave hospitals and other health care facilities money for construction and modernization. In return, hospitals agreed to provide a reasonable volume of services to people who can’t pay. The program stopped receiving funds in 1997, but about 170 health care facilities nationwide still must provide free or low-cost medical services. These “safety-net hospitals” are committed to providing access to care for people with limited or no access to health care due to their financial situation, insurance status, or health condition.

There are safety-net hospitals in every state except Alaska, Indiana, Maryland, Minnesota, Nebraska, Nevada, North Dakota, Rhode Island, South Dakota, Utah, Vermont, Wyoming, and all the territories except Puerto Rico.

To qualify for free care at a safety-net hospital, you generally have to make a gross yearly income of less than $23,550 for a family of four. If you make more than that, you still may be eligible for reduced-cost care if your income is up to double that amount.

You can get more information or find a safety-net hospital near you on DHHS’s safety-net hospital page.

Ask at Your Local Hospital

As an alternative to finding a safety-net hospital for your child, you can call your local hospitals or medical centers and ask if they provide low-cost or free services to the public. Many large teaching hospitals and medical centers provide free or low-cost quality care for families who otherwise can’t afford it.

If you find a hospital that offers this service, you’ll meet with financial counselors there to work out a pay rate. They may also connect you to other resources in your community for discounted care.

Pay Less for Prescriptions

Prescriptions can really drain your wallet, especially if your child isn’t enrolled in a public program such as Medicaid or CHIP. Here are some ways to better manage the money you spend on medicines:

• Find out if your child can take generic (non-brand) medicines. These often have the exact same active ingredient as the name-brand medicine, but cost a lot less.
• Find out if there is an over-the-counter alternative. Ask the doctor or pharmacist if over-the-counter versions are available for the prescription medicines your child takes.
• Compare prices at local pharmacies. Call each one to ask what they’re charging for your child’s prescriptions. Many small private pharmacies can negotiate their prices for medications.
• Contact the pharmaceutical company that makes the medication. All the big pharmaceutical companies have prescription assistance numbers you can call for help.
• Beware of free prescription samples (or coupons and rebates). They sound appealing, but they often are for expensive, name-brand medications. That’s fine while the samples last. But since many doctors don’t like to change a medication if it’s working for a patient, you could get stuck paying full price after the samples run out. Before accepting a sample, talk to your doctor about whether you can afford that medication in the long term. If it’s something your child only needs for as long as the samples last, take advantage of the freebie!
• If you can’t afford to refill a prescription, call the doctor who prescribed it. Say your child’s medications are too expensive and you need a lower-cost alternative. If there’s not an alternative available, ask what for you can do about lowering the cost. It’s not unusual these days for people to ask for this kind of help, and doctor’s offices often know how to get it or put you in touch with someone who can.

Have Special Needs? Contact Family Voices

If you have a child with special needs, Family Voices, an organization created to assist families like yours, may be able to help. Its Family-to-Family Health Information Centers offer contacts, support, and information for each state regarding pediatric health issues.

It also can help you manage insurance and other care challenges, such as handling the appeal process if your insurance claim is denied. Each state’s office is run by parents who have children with special health care needs.

Know Your Health Plan

Learn as much as you can about your health insurance policy before your child gets treated so you don’t get stuck with medical bills you can’t pay. You’re in a better position to navigate the system and negotiate self-pay rates, if necessary, when you know if your doctor is in-network, what’s covered, and what percentage of the cost you’re responsible for.

Go to your health insurance carrier’s website and log into its insurance portal with your health insurance card number. There, you’ll find your benefit plan, including a list of in-network providers, your deductibles, co-insurance, and co-payments. These tools can help you estimate the cost of treatment. If you’re not sure about something, call your health insurance company and ask. Make a note of the name of the person you speak to and the date of your conversation in case there’s an issue later.

Health insurance companies can’t refuse someone coverage or limit a person’s benefits because of a pre-existing medical condition. They can’t put a lifetime cap on the dollar amount that they will spend on benefits either.

Stay Positive, Stay on Track

Trying to find affordable health care for your family can be overwhelming. But you’ll feel better knowing your child’s health care needs are taken care of. Lots of kids are eligible for programs that provide free or reduced-cost care, even if their parents are working.

If you don’t know where to start, contact your local community health center or county health department and explain your situation. If they can’t help you, they can probably direct you to an organization that can. You can also call your state’s 211 Helpline, which offers free and confidential information about health care and other services.

In America today, we all need health insurance. You do. Your kids do. It’s not a “nice to have” anymore — it’s a “must-have.” And that’s the law. In most cases, parents who aren’t covered (or don’t have their kids covered) by health insurance might have to pay a fine each year. Going without also means that if someone gets sick or is injured, a family might have to pay all the bills for care received. That can cost a whole lot more than paying for coverage.

To help people get health insurance, the federal and state governments set up a health insurance marketplace (also called the health care exchange). This makes it easier than ever to get coverage, but the process can seem a bit confusing.

Here’s what to do to get health insurance.

Getting Started

Before you look for a health insurance plan, check to see if you or your child can get coverage some other way. The government considers a person covered if they have Medicare, Medicaid, a state-run child health insurance plan (CHIP), or insurance they get through a parent or spouse’s job. Your child could already be covered by or be eligible for free or low-cost coverage through a public program.

If you need to get insurance for yourself or your child, you can go online and visit the U.S. Government’s comprehensive health care website (www.healthcare.gov). There, you can apply for CHIP or Medicaid or shop for a plan.

It’s important to remember, however, that you can only buy insurance through the health care marketplace during the open enrollment period, which begins in mid-November and lasts until February. If the enrollment period is over, you or your child may have to get insurance through a private insurer to be covered for that year.

In some states, the health care exchange is run by healthcare.gov. Other states run it themselves. If you live in one of those states, you can visit your state’s official marketplace website directly or link to it through healthcare.gov.

If you don’t have regular access to a computer, you can call the U.S. Government’s help line at 1-800-318-2596 to fill out an application, enroll, or compare plans.

How to Apply for a Plan

Applying for an insurance plan through the health care marketplace can be done online through healthcare.gov or a state site, over the phone, or through regular mail by filling out a form that can be mailed to you or downloaded from the Internet.

Before you fill out an online application, you’ll need to create an account on either healthcare.gov or your state’s marketplace.

You’ll need to know a few things about each person applying for coverage. Be ready to provide:

• Social Security numbers (or document numbers for legal immigrants)
• information about employers and income
• policy numbers for any current health insurance plans

If you have a job that offers health insurance but you’re not happy with it, you can choose to get coverage through healthcare.gov instead. But before you apply, you’ll need to fill out a form called an Employer Coverage Tool that can be found on the healthcare.gov website.

The application will ask for standard information like your name, your child’s name, your address, phone number, and email. You’ll need to answer questions about citizenship, dependents, and whether you plan to file a federal income tax return the following year.

If you want help paying for insurance, you will have to provide information about your yearly income (and the income of anyone else applying for coverage). This includes income from jobs and other sources like:

• Social Security
• unemployment
• retirement accounts
• property rental
• alimony

If you pay alimony or interest on student loans, you can deduct the amount you pay when you fill out your application.

What Happens Next?

Once you’ve submitted an application, healthcare.gov or your state’s site will determine if you or your children qualify for Medicare, Medicaid, or CHIP. It will also determine if you or your children are eligible to get insurance through the health care marketplace. For most people, if you’re an American citizen or legal immigrant and you’re not in jail, you’ll be eligible.

Although it’s unlikely, sometimes parents are eligible to buy insurance through the health care marketplace but their children aren’t. Sometimes kids are eligible but their parents aren’t. If either of these apply to you, you would have the right to appeal the decision, and you could still get private insurance for anyone needing coverage.

If you’re eligible for coverage but don’t qualify for any publicly subsidized programs, the health care marketplace will present you with the insurance plans available in your state based on your income and family situation. It will be up to you to decide which policy to buy.

What to Look for When Choosing a Policy

The important words to remember when shopping for a policy are “premium” and “deductible.” The premium is the amount you pay each month for coverage. The deductible is the amount you need to pay each year for medical services before your health insurance kicks in. As a general rule, insurance plans with low premiums have high deductibles, and plans with high premiums have low deductibles.

These are the basic levels of coverage:

• Catastrophic insurance is designed to protect an otherwise healthy person in the event of a major injury or illness. It’s available only to people under age 30 and those who are exempt from other plans due to hardship. This type of insurance can have low premiums but very high deductibles. Plans generally cover less than 60% of the costs of health care.
• Bronze plans also have low premiums and high deductibles, but they offer better coverage than catastrophic insurance, typically paying for 60% of costs.
• Silver plans and gold plans have average-sized premiums and average-sized deductibles. Silver plans cover 70% of costs. Gold plans pay 80% of costs.
• Platinum plans, the highest level of coverage, have high premiums and low deductibles. These plans cover 90% or more of health care costs.

All catastrophic, bronze, silver, gold, and platinum plans offer free or discounted visits to the doctor for things like routine checkups or vaccinations and some preventive care. Most plans also offer discounts on prescription drugs and other services. Specific benefits differ from plan to plan, though, so you’ll need to learn what each plan offers. Think about what’s important to you and your family and make a decision based on how well the plan meets your needs.

When Can I Start Using My Insurance?

Once you’ve signed up for a plan and paid the first month’s premium, you or your child can start using the insurance. The insurance company should send you and everyone covered by your policy insurance cards with your policy number and other information. If you or your child need to see a doctor or go to a hospital before you receive your card, call your insurance company first to make sure your family has been entered into their system.

You should also make sure that any doctor you choose for you or your child is in your insurance plan’s network. A network is made up of doctors, specialists, and other health care providers who have agreed to work with your insurance company when it comes to payments and services. If you take your child to a doctor who isn’t in your plan’s network, you may have to pay full price for some services.

Ask around and learn what you can about the primary care physicians in your plan’s network, and then choose a doctor you like. Once you’ve done that, schedule checkups and use your insurance to help keep your family healthy.

Providing Support

If your child needs to have an operation, you probably have plenty of questions, many of them about anesthesia. You may wonder if your child will feel pain during the operation, be aware of what’s going on, wake up in the middle of the surgery and be scared, or not feel well afterward.

The concept of your child being unconscious or losing sensation in the body can be unnerving, especially when you’re entrusting his or her health and well-being to someone else. But anesthesia today is very safe. Unlike anesthesia of the past, when doctors often used nothing more than ether and a stethoscope, modern anesthesia in hospitals and surgery centers is given by highly trained professionals who use a wide range of safe medications and monitoring equipment.

Whether your child is scheduled for a minor outpatient procedure or major surgery that requires recovery time in the hospital, it’s important for you to be prepared to support your child. The more educated, calm, and reassuring you are about the surgery and the anesthesia, the easier the experience is likely to be for both you and your child.

What Kids May Fear

Kids’ age and developmental level play a large role in what they find scary about receiving anesthesia. Some kids, especially younger ones, may fear being separated from their parents. So they may feel more secure being with mom or dad in a preoperative holding room or operating room until they fall asleep.

Older kids, however, may have much more complex fears: exposure of body parts during surgery, cutting and scarring of the body, waking up during surgery, loss of control, pain after surgery, and even death.

One common concern among kids, young and old, is whether they’ll receive a needle and, if so, if it will hurt. A kind of local anesthetic can be placed on the skin to remove the pain of needle pricks when starting an intravenous (IV) line. This usually works well to soothe fears of getting a “shot.”

And, depending on the type of surgery and anesthesia being used, in many cases kids can drink medication to help them relax and feel sleepy before going into the operating room. Also, children often are given an inhaled anesthetic so they can breathe themselves to sleep in the operating room before an IV is placed.

Talking to Your Child About Anesthesia

It may help your child handle the stress and uncertainly of the procedure or surgery if you have a conversation ahead of time about what to expect. Here are a few talking points to consider:

Let your child know where you’ll be during the whole experience. Reassure your child that you’ll be in the waiting room nearby during the surgery and in the recovery room when he or she wakes up after the surgery. You may also be able to sit with your child until he or she falls asleep before the surgery. Discuss this with your anesthesiologist.

And explain that (in many outpatient procedures), your child can come home soon after the surgery is done. In cases that require hospitalization, most hospitals allow at least one parent to stay with the child day and night.

Give your child reassuring age-appropriate and developmental stage-appropriate information. For a younger child, for example, less information may be better than more. That doesn’t mean lying — it just means giving the most appropriate information for your child’s age and developmental stage. Giving young kids very detailed explanations might make the experience more frightening or worrisome. Of course, every child is different, so have a discussion based on your child’s needs.

Consider saying something like, “A special doctor will give you a little medicine to make you sleep very deeply so that you won’t feel anything during the operation.” Or you may just want to explain that all he or she has to do is breathe (if your child is getting general anesthesia or will be sedated using a mask). In many cases, the IV and breathing tubes are placed after kids are asleep, so they will have no knowledge or awareness that some other potentially frightening things are even happening.

But preteens and teens, especially, may need to be reassured that they will not wake up during the procedure but that they will wake up afterward.

Avoid frightening language. For example, don’t say, “You’ll be given gas” or “You’ll be put to sleep.” A child may confuse “gas” with the fuel that can poison or kill, and confuse “put to sleep” with what happened to an ailing family pet. Also avoid saying, “You’ll be taking a nap” — young kids may think all future naps mean surgery. Likewise, you should never tell children that they’ll be stuck with a needle if they misbehave or don’t cooperate.

Answer questions honestly. If you don’t know the answer to a question, reassure your child that you will ask the doctor.

Explain that the anesthesia will prevent your child from feeling any pain during the procedure.

Explain that there may be some pain and discomfort after the surgery, but that the doctor can give medicine to help. It’s important for kids to understand that they don’t have to try to be brave or “put on a happy face” after surgery. Explain that it’s OK to let the doctor know about any pain or discomfort so that your child can get help right away.

Explain that it’s normal to feel a little weird after surgery. Although every person has a different experience, a child who was sedated or had general anesthesia may feel groggy, confused, chilly, nauseated, scared, alarmed, or even sad when the medications wear off. That’s all perfectly normal. You may want to tell your child, “You might wake up feeling a little funny, but that’s OK. I will be there with you.”

Make sure whatever you tell your child is in line with what the doctor has told you. Don’t pass on any misinformation — it may scare your child if something happens that’s different from what you’ve explained.

Let your child know that it’s normal to not remember anything about the surgery. That’s one important aspect of general anesthesia.

Encourage your child to read about the present safety of anesthesia. Then share the information with the family — reading and sharing information is an excellent coping mechanism.

Staying Calm

As you discuss the hospital and surgery, remember to use nonverbal cues to communicate assurance: your tone of voice, facial expressions, gestures, and body language convey powerful messages. If you appear fearful, your child is likely to feel scared or confused regardless of the words you use to explain things.

That’s why it’s important to try not to cry or become emotional in front of your child before or after the procedure. If you need to vent your emotions, try to take a few minutes to step out of the room where your child can’t see or hear you.

If you’re a calm, supportive, and soothing presence for your child before and after surgery, the whole experience will probably be easier and far less stressful for you both.

Getting health care for your child can be complicated. Many doctors only offer appointments during the school day, and their offices might be far from school. To see the doctor, your child might have to miss school and you might have to leave work — which isn’t always an option.

School-based health centers make going to the doctor as simple as walking down the hall.

Staffed by health care workers like nurses and doctors, school-based health centers provide a range of services to meet kids’ and teens’ health care needs. Services can include check-ups, lab tests, prescriptions, counseling, and regular visits for problems like asthma and diabetes.

About 2,300 school-based health clinics operate in 49 states and Washington D.C., serving more than 2 million students in preschool through 12th grade. Centers usually are inside a school building or right next door. Some school-based health centers serve more than one school or even a whole school district.

Most school-based health centers are run by a local health care group, such as a community health center, hospital, or health department. A few are run by the school district itself. Centers often get money from charities and the government so they can give care to families who cannot afford to pay.

You can find out if your child’s school has a health center by contacting your child’s teacher or the school office. Most school-based health centers also let parents know about their services by sending details when the student enrolls through school newsletters or websites or at parent-teacher events like back-to-school nights.

Why Have Health Centers at Schools?

When students aren’t feeling well, they have a harder time learning. They may miss class a lot — and when they are in class, they might have trouble paying attention. Giving kids and teens access to health care at school puts them in a better position to learn.

Students who use school-based health centers benefit in many ways. They spend more time in class because they tend to be sick less often and don’t have to take as much time off school to get to appointments. According to data from the School-Based Health Alliance, school-based health centers:

• help students do better in school
• increase high school graduation rates
• decrease school discipline cases

Studies show that teens, who might resist going to a doctor, are more willing to get help for problems like depression and weight issues at a school-based health center. This might be because they see the health center’s staff at school each day, which helps build trust.

What Services Do They Offer?

Services at school-based health centers vary based on local needs. Some have one or two health professionals who offer basic care and check-ups. Others offer a complete range of services, including mental health care. Centers may even have nurse practitioners, medical students, doctors, social workers, drug counselors, or dietitians on staff.

Services can include:

• tests for strep throat
• flu shots
• sports physicals
• tooth and eye exams
• scoliosis screenings
• medicine and check-ups for chronic conditions, like asthma and diabetes
• teaching students about healthy eating and exercise
• counseling for mental health and emotional issues
• referrals to specialists, if needed
• help applying for health insurance
• behavioral health care to help students with attention deficit hyperactivity disorder (ADHD) focus in class, or enable stressed or anxious students to talk privately with a therapist without leaving school

Besides one-on-one care, some school-based health centers lead small-group and classroom activities, like lessons on active lifestyles.

Most school-based health centers are open whenever school is in session. They often have rules to keep kids from visiting during core classes unless it’s an emergency. Some are also open after school, at night, or on weekends. As well as serving students, they may provide care to family members, such as younger siblings.

Although a student can get many health care needs met at a school-based health center, it is not meant to replace the child’s regular doctor. If your child already has a doctor outside school, the health center will work with that doctor to offer consistent care. For kids and teens who don’t have a regular doctor, school-based health centers can offer care during the school year and link students to a doctor or other health center when school isn’t in session.

How Do Health Centers Keep Parents Informed?

School-based health centers work hard to keep parents in the loop about their children’s health. You might be invited to participate in your child’s appointments via phone, email, or computer — or even in person, if your schedule allows. Between appointments, centers follow up with parents and guardians in a range of ways, such as written letters, phone calls, notes on secure websites, or even home visits.

And of course, school-based health centers only provide care to children with parents’ written permission. Most often, you will have the option to sign a permission form at the beginning of each school year saying that your child can get treatment at the school-based health center. Or you can give your consent on a visit-by-visit basis.

How Much Do Services Cost?

Many school-based health centers offer care on a sliding scale based on family income. Depending on the center and your situation, care could be free. Most also accept health insurance, such as Medicaid, a state-run child health insurance plan (CHIP), or private health insurance. Your school-based health center or insurance provider can give you more information.

If your child has a serious illness, the caretaking that falls to you is undoubtedly intense. But of course you do it willingly. After all, you’d do anything for your child, including switching places in a minute if only that were possible.

Instead you give all that you can, in every other imaginable way. It’s harder than anything you’ve ever done, and honestly, there are moments when the sheer magnitude of what you’re up against is so overwhelming that you just want to run and hide.

Ask any parent who’s done this before and you’ll find out something very important: You’re not alone.

The Caregiver’s Dilemma

When you’re the caregiver of a child who is seriously ill, it can feel as if the whole world is on your shoulders. Your sick child needs you. You may have other children who need you. Your spouse needs you. Your job — however pointless work might seem right now — needs you.

Yet there’s only so much you can give before you will feel mentally, emotionally, and physically drained. That’s why it’s a necessity — not a luxury — to spend some time taking care of yourself so that you can recharge and feel empowered to continue to support and care for your child.

Tips for Caregivers

Many of these tips might seem easier said than done at first, and a few may seem downright frivolous. But to make it through the long haul, consider the wisdom of that air-safety rule about putting your own oxygen mask on first before helping others. Here are some ways to do that:

Take breaks. It’s essential to regularly schedule a few times each week — even for just an hour or two — when you can get away while a family member, friend, or a health aide stays with your child. Once away, that time is yours, so don’t feel guilty about how you spend it. Nap, read, have coffee with a friend, go shopping, whatever allows you to relax. While you’re out, your child will probably enjoy having someone else to talk to and you’ll feel refreshed when you get back.

Eat right. It’s no surprise that living on coffee and picking at hospital leftovers can leave you feeling tired and run down. If you know you’re going to be out, carry nutritious snacks with you, like fruit, granola bars, sandwiches, or nuts. And if friends offer to bring homemade meals to your home to help out, take them up on it.

Exercise. Whether through a brisk walk, a bike ride, or yoga, most people find that exercise helps clear the mind, boost energy levels, and improve sleep. Even 20 minutes can do the trick, so save a bit of time every day to get moving.

More Tips

Stay organized. Keep all the information you’ve accumulated about your child’s illness in one place, including medication schedules, important phone numbers, and insurance information. When you think of questions for your doctor, write them down immediately so you won’t forget. And since dealing with insurance companies can often seem like a full-time job in itself, enlist the help of your spouse or another trusted family member or friend to help keep it all straight. Use a notebook to keep all of the information in one place.

Ask for help. Your friends and family likely want to help you, but might not be sure about what you need. If someone says, “If there’s anything I can do…” — and there is — say so. You’d be surprised at how running an errand, doing some laundry, or just sitting and listening to you talk about the day can not only benefit you, but also can make a loved one feel useful.

Find a support group. Ask your child’s doctor, nurse, or social worker for information on local support groups related to your child’s condition or caregiving in general. If you feel more comfortable sharing anonymously online, then look there. The important thing is to get beyond the feeling of isolation by reaching out to others who’ve been in your shoes.

Acknowledge your feelings. Your child is sick — of course you have feelings of anger and frustration, and days when you wish you didn’t have to deal with it all. Does this make you a bad parent? No, it makes you human. Accept these negative feelings and the often painful fact that no matter how much time or energy you invest in your child’s care, you can never be completely in control of your child’s health and happiness.

Be aware of the signs of “caregiver burnout.” Caregiver burnout is a true state of exhaustion, both physical and emotional. It tends to happen when caregivers try to “do it all” without getting the help or rest they need.

Because caregivers tend to be on autopilot, they’re not usually quick to recognize burnout in themselves. Other people might notice the symptoms first, which can include changes in appetite and sleep patterns, withdrawal from social activities, increased anxiety, or emotions that are either heightened (such as excessive crying or irritability) or decreased (feeling empty or unconcerned). Take it seriously if someone you trust notices any of these things in you.

Getting Help

If you feel like you may be experiencing caregiver burnout, depression, or anxiety, explain your feelings and symptoms to your doctor, who may recommend that you see a counselor or therapist (especially one who specializes in caregiver needs).

Your doctor also may encourage you to take a temporary break from your duties by looking into respite care (the kind needed would depend on how ill your child is). Medications for anxiety or depression could be an option, too.

Finally, remember that you are not superhuman. You’re a parent doing your best. So give your child your time, your encouragement, your attention, and your unconditional love. Just be sure to save a little bit for yourself.