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For Kids, Teens, and Young Adults
Life is full of changes….some are small while others are REALLY BIG.
Bigger changes are often called TRANSITIONS.
Examples of transitions are: starting or changing schools, graduating from high school, moving away from home, getting a job, moving from one place to another, changing doctors, getting married, or having children.
One of life’s most complicated transitions is moving through the teen years into adulthood. Challenges include: figuring out how to make your own decisions and be your own person, learning to manage your health, and deciding how you want to live and what you want to do as an adult. If you are reading this, YOU are getting ready to become an adult.
Transition to adulthood is also a very exciting time! You will have more chances to be independent, try new things, meet new people, and become your own person! It can also be scary because of so many changes and new responsibilities.
There are many important questions to ask as you prepare for transition:
What do I want to do after high school?
How will I stay healthy to have the life I want?
How will I find adult doctors?
How will I care for my condition on my own?
The purpose of this toolkit is to provide you with a travel guide to help you plan this exciting “road trip” or “adventure” called transition to adulthood. It will help teach you the skills you need to become independent and reach your goals. It will also help you learn about resources that
are available to help you.
Life is always an adventure, and we wish you the best!
–The Arthritis Foundation Transition Team
Your Transition Timeline
|Life Area||Age 12-15||Age 16 years & up|
Understanding Your Health Insurance
Learn Your Insurance Benefits
Know what type of health insurance you have and how it is paid for:
Does your insurance come from your parent’s job?
- Does your family buy insurance on its own?
- Does the government pay for your insurance?
- Is your insurance provided by a Health Maintenance Organization (HMO)? This type of insurance will only pay for care from the doctors and hospitals that are included in the plan (or “network”).
- Is your insurance provided by a Preferred Provider Organization (PPO)? This type of insurance will pay for you see any provider you want, but may make you pay a larger part of the cost to see providers that are not included in the plan (or “network”).
Use providers who are in your network to be sure your insurance benefits will cover as much of the cost as possible. Find out whether your care will be covered if you travel or go away to college in a new city.
Begin to learn more about what services are covered by your insurance. Know your plan’s deductible(s) and co-payments.
- Deductible = the amount of money that you need to spend on health care before your insurance company will start paying the bills.
- Co-payment (or “co-pay”) = a fixed amount that you pay for a health service that is covered by your insurance, usually $15 or $20.
Always carry your own copy of your current insurance card.
Find out if you need a referral from your primary care physician before you go to a new doctor or specialist.
Sometimes your insurance company will refuse to pay for (“decline”) a medication or service that you and your doctor think you need. If this happens, you and your doctor can ask the insurance company to reconsider (“appeal”) the decision.
Before turning 18 years old, check what age your current plan coverage will end and apply for adult health insurance before your coverage ends.
When Contacting Your Insurance Company, Be Ready to Provide:
Date of birth
Identification number (on your insurance card)
Relationship to the policyholder. (Policyholder = person in charge of the insurance. This might be you
or your parent.)
Policyholder’s date of birth, address and phone number
Reason you are calling
If available, a reference number for your request (may be provided on a letter from insurance)
Keep Track of Insurance Information
Keep track of phone calls with your insurance company. Write down the date, the number you called, who you talked to, what you talked about and what is going to happen next.
Follow up to make sure issues/problems are resolved.
Keep all insurance information in a place where you can easily find it, such as folder or large envelope marked “insurance”. Save important information, such as:
- Explanation of Benefit (EOB) forms
- Eligibility and denial letters
- Notices regarding a change in covered or excluded services, deductibles, co-payments or out-of-pocket expenses.
Explore Adult Insurance Options
Before turning 18 years old, check at what age your current plan coverage will end and apply for adult health insurance before your coverage ends.
Preparing for this transition in advance is VERY IMPORTANT
to prevent you from losing access to your doctors and medications!
Search to find which public, private and community programs meet your needs at: http://finder.healthcare.gov/
Employee Benefits – your own coverage: Set career goals for gainful employment with health insurance coverage offered through employment.
Employee Benefits – your parent’s coverage: Find out how long you can stay on your parents’ policy and what will be the cost of coverage. If your parents have a private (non-government) health insurance plan, most plans will continue to cover you up to age 26.
Campus Health Plan: College students may qualify for their school’s insurance plan.
Private Plan: You may be able to purchase an individual plan from a health insurance company.
Medicaid: If you have a disability and low income, you may be eligible for insurance through your state’s Medicaid program. Go to http://www.medicaid.gov.
Medicare: Individuals with certain disabilities who have received Social Security Disability Benefits for 24 months may be eligible for health insurance through Medicare. Call 1-800-MEDICARE (1-800-633-4227) or go to www.medicare.gov.
If you have a social worker at your rheumatologist or primary doctor’s office, talk with him or her to find out more about the insurance options available in your state.
Adapted from http://internet.dscc.uic.edu/dsccroot/parents/milestones_teens.asp
Do your HOMEWORK!
Choose one of the following activities to improve your health management skills!
Assignment #1: Learn about your current health insurance. Use the form below to find out what you need to know. Fill it out together with your parents if they are in charge of your health insurance now:
Name of My Insurance Company: Type of Insurnce Plan (HMO or PPO): Where my insurance comes from (government, employer, private): Hospitals in my network: Monthly or yearly cost of my health insurance plan: Yearly deductible: Co-pay for doctor visits: Age at which I will need to change insurance plans: Will the cost of my insurance plan change when I am over 18: If so, how much will it cost:
Assignment #2: Find out what insurance options will be available to you when you lost your current coverage. Use the section above, "Explore Adult Insurance Options," as a guide. Will you need to get a job or be enrolled in college in order to have insurance coverage? Ask your parents, your doctor, or your social worker to help you understand your options.
How to Make and Prepare for your Doctor's Appointments
It’s time to start making your own doctor’s appointments! Calling a doctor’s office for the first time can be stressful. But if you prepare for the call by following these steps, making an appointment on your own will be easy!
Watch your parent make an appointment.
Use the form below to prepare what you will say, and practice with your parent.
Have a calendar ready and know what appointment dates will work with your school schedule and other activities you are involved in.
Have all the information that you will need to make the appointment, including your date of birth, your insurance provider and the reason you need the appointment.
Sometimes you may have to wait on hold for few minutes before you can schedule your appointment. Call during a time when you will not be in a hurry, and can wait if needed.
Use the script below to make your phone call and schedule the appointment.
Record your appointment date and time to be sure that you remember it…in a calendar, on your phone, or in a notebook.
Don’t forget to prepare for your appointment:
- Bring a list of the medicines that you take regularly, including how much you take and when you take them. Or, bring your medicine bottles with you to the appointment.
- Bring your insurance card.
- Prepare and bring a list of questions for your doctor.
How to Make an Appointment – Sample Script
"Hello, my name is ___________________________" (Tip: Use your first and last name)
"I need an appointment to see Dr. ____________________"
"Because ________________" (Example: "I need a check up, my knee hurts, I have a rash.")
"How soon can I get in?" ___________________ (Write date and time here)
Note: If the date and time is ok, just say, "Thank you, that will be fine."
If not, just say, "That won't work for me, can you look for something else?"
Before you end the phone call, repeat the date and time of your appointment back to them. Don't forget to write down the appointment so you won't forget it!
Sometimes you may be told that you have to wait several weeks for an appointment. But if you are feeling sick, remember to ALWAYS leave a message for your health care provider to let him or her know. They can help you to get a sooner appointment if needed.
After a visit with your provider, put a reminder in your calendar or phone so you’ll remember when you need to call to make your next appointment. If you need to get lab tests checked between appointments, make sure to put a reminder in your calendar or phone for that, too!
Adapted from http://internet.dscc.uic.edu/dsccroot/parents/milestones_teens.asp
Do your HOMEWORK!
Choose one of the following activities to improve your appointment-scheduling skills!
Assignment #1: Schedule your own appointment using the instructions and script above. Make sure you have a calendar or other place to record the appointment. If you’re nervous, have your parent listen in on speaker-phone while you make the call.
Assignment #2: Check in to your doctor’s appointment on your own. Tell the receptionist that you are here for your appointment, what time your appointment is scheduled, and which doctor you are going to see. Answer any questions that the receptionist has – he or she may ask for your birth date, home address, phone number, or other information. Make sure to bring your insurance card with you.
Understanding Lab Tests
Like most parents, you’ve guided and encouraged your child in her accomplishments. You held her hand as she took her first steps, and you beamed with pride when she recited her ABCs. But when your child stepped into the world of juvenile arthritis and its management, you may have felt as if you were the one who needed hand-holding. It can seem there is a whole new alphabet to learn – when your child’s doctor tells you he is ordering a CBC, an ESR or a UA, that your child has a positive ANA or negative RF, or that she’ll need regular LFTs.
Whether your child is just beginning the diagnostic process or is well into the management of arthritis, laboratory tests – which doctors often refer to by names that sound like secret code – are a part of life. Tests on even a small sample of blood or other bodily fluid can give the doctor an important glimpse into what’s going on throughout your child’s body, says Ilona Szer, MD, director of pediatric rheumatology at the Children’s Hospital of San Diego. Your doctor can use lab tests to rule out other conditions, determine the extent of disease or monitor the activity of the disease or the effects – both good and bad – of the drugs used to treat it.
To help you crack the code and make sense of the tests your child’s doctor orders, Dr. Szer identifies some of the most common tests prescribed by pediatric rheumatologists and provide explanations of the tests, their limitations, and why doctors use them.
CBC (Complete Blood Count)
What it is: A measure of three types of cells that are present in the blood – red cells (RBCs), which carry oxygen; white blood cells (WBCs), which fight infection; and platelets, which make the blood clot.
Why doctors order it: Cell counts can provide clues to your child’s condition. For example, white cell counts are very high in systemic juvenile idiopathic arthritis (JIA) and low in lupus; platelets may be very low in lupus and very high in systemic JIA; anemia (low red blood cells) is almost always present in a child with systemic JIA. Some of the medications used to treat arthritis may cause gastric bleeding, and the RBC count might fall as a result.
CRP (C-Reactive Protein)
What it is: A test that measures the concentration of a protein called c-reactive protein in the blood. The higher the concentration, the more severe the inflammation.
Why doctors order it: To figure out the extent of inflammation. Because the test is sensitive and responds rapidly to changes in inflammation, your child’s doctor may use it to monitor her disease activity and response to treatment.
Test limitations: The CRP goes up any time there is inflammation, including when your child has a cold.
ESR (Erythrocyte Sedimentation Rate – also called “sed rate”)
What it is: A test that measures how fast RBCs, or erythrocytes fall and settle, like sediment, at the bottom of a test tube. The presence of inflammatory factors affect the rate at which the cells fall. The more inflammation in the body, the higher the ESR.
Why doctors order it: Because a high ESR, like a positive CRP, indicates the presence of inflammation. In a child already diagnosed with arthritis, a doctor may use the test to monitor disease activity or response to treatment. A lower sed rate would indicate inflammation is being controlled.
Test limitations: The ESR is less sensitive than the CRP and doesn’t respond as quickly to changes in inflammation, so many doctors prefer the CRP.
What it is: A test in which urine is examined under a microscope.
Why doctors order it: Because some medications are metabolized or excreted by the kidneys, the doctor will use a urinalysis to be sure the kidneys aren't overburdened. Doctors also use the test to look for and monitor lupus-related kidney disease.
CPK (Creatinine Phosphokinase)
What it is: A test used to detect the presence of one of several enzymes released from muscle cells when they are damaged by inflammation.
Why doctors order it: An elevated CPK raises the suspicion for juvenile dermatomyositis (JDM), because muscle inflammation and subsequent damage are the hallmarks of JDM. The test also measures a medication’s effectiveness in reducing the inflammation that caused the damage.
LFT (Liver Function Test)
What it is: A test that determines whether the liver is healthy and functioning normally. The most commonly ordered tests are liver transaminases, which measure damage to the liver.
Why doctors order it: Because many medications used to treat arthritis (methotrexate, in particular) are metabolized in the liver and may overburden the liver, your child’s doctor may order regular LFTs to determine if the medications are causing any damage.
HLA (Human Leukocyte Antigen) – B-27 typing
What it is: A blood test used to detect the presence of a B27 variant of a gene involved in immune regulation.
Why doctors order it: Detection of HLA-B27 tells the doctor that a child has a genetic marker associated with a spondyloarthropathy, such as ankylosing spondylitis (AS) or a related condition known as enthesitis related arthritis (ERA) or seronegative arthritis and enthesopathy (SEA) syndrome. These syndromes are frequently suspected in older children (boys more than girls) with hip and knee arthritis and back pain. Ninety-five to 98 percent of patients with AS have a positive HLA-B27, as do 50 percent of those with other spondyloarthropathies.
Test limitations: Eight percent of Caucasians have a positive HLA-B27, while far less than one percent actually develop arthritis.
RF (Rheumatoid Factor)
What it is: A test designed to detect and measure levels of a specific antibody directed against the blood component immunoglobulin G (IgG).
Why doctors order it: A positive RF is found in adults with rheumatoid arthritis. If the test is positive, it helps your child’s doctor determine both the form of JRA he or she has and how aggressively to treat it. “Children – primarily girls – with RF-positive JRA truly have rheumatoid arthritis and, therefore, are at greatest risk for joint erosions, rheumatoid nodules and poor functional outcome,” says Dr. Szer.
Test limitations: Fortunately, unlike adults, 90 percent of children who have JRA do not have a positive RF.
ANA (Antinuclear Antibody)
What it is: A test that measures the presence of an antibody directed against structures in the child’s cells’ nuclei.
Why doctors order it: A positive ANA is associated with many kinds of arthritis and with other rheumatic conditions such as lupus, scleroderma and mixed connective tissue disease. In young girls with pauciarticular JRA, a positive ANA may be associated with a higher risk of uveitis.
Test limitations: Many rheumatic conditions have a positive ANA, and up to 20 percent of all children have positive ANAs, so the presence of ANA alone doesn't necessarily indicate a problem.
Beyond Lab Tests
These are just a few of the more common tests your child’s doctor may order. There are also many other types of tests – including X-rays, bone scans and biopsies – that doctors may use to help them better understand your child’s disease. Yet every test has its limitations, and no test in itself can diagnose arthritis. The right tests, along with your doctor’s own observations and your participation in the process, can help your child get the right diagnosis and the safest and most effective treatment.
Credit: Some of this material may also be available in an Arthritis Foundation brochure. This material was originally prepared for the Arthritis Foundation and is protected by copyright. More information can be found online at www.kidsgetarthritistoo.org
Finding and Using Adult Health Care
As young people grow from childhood in to adulthood, may well move from care by pediatricians into adult medicine. Moving to a different town due to school or a change of employment will also create a need to find a new doctor, especially if you happened to grow up with chronic health issues. So, how do you find a doctor who will meet your medical needs, that will be covered by your health plan, and who will give
you the care you are looking for?
Before you start looking for a new doctor, think about what you want:
Is where the office is located important?
Will you need help with transportation?
Do you need an office that is wheelchair accessible or do you need other special assistance in the doctor’s office?
Are office hours convenient?
How do you contact the doctor at other times?
What hospital do you want to use, and is this doctor on the staff there?
Do you want someone who will take time with you during an office visit or are you comfortable being seen by someone who is “good” in his or her field but perhaps does not have the best bedside manner?
Is it important that this new doctor is knowledgeable about your special
health care needs or do you think you can provide that information or
connect the new doctor with those who could provide medical insight?
Ways to look for a new doctor include:
Ask your current doctor
Check out the doctor your parents or other family members see
Call a family support group or adult disability agency and check around
Ask adults who have health needs similar to yours for recommendations
Refer to your health insurance company booklet of approved providers
Ask a Vocational Rehabilitation or Independent Living Center counselor
Find a university health center (sometimes there are research studies going on which offer free care)
Contact your local Medical Society, American Academy of Family Practitioners, or Internal Medicine Society either through the Yellow Pages or on their national websites
Since your wellness depends on the medical services you receive, it is important
that your comfortable talking with your new doctor and feel that he or she
understands your concerns. Consider scheduling a “get-acquainted” interview before you make a final choice of a new doctor. You will have to pay for this visit, as it is NOT covered by insurance benefits. An ideal time is about 15 to 30 minutes and should not waste your time or the doctor’s. The best time to see a new physician is when your health condition is stable so you aren’t asking for crisis care while seeing if you
can develop a working relationship.
Think about (and write down) questions that are important to you:
Is the doctor knowledgeable about your health issues and/or willing to learn from you and from previous doctors?
Do you like the communication style with the doctor and in the office?
Are you satisfied with office practices and access during an emergency or in urgent situations?
Do you have access to hospitals and specialists if I need them?
Doctors who like to care for children are different from doctors who like to care for adults. For this reason, young adults seeking health care need certain skills:
Ability and willingness to tell the doctor about your history, current symptoms, lifestyle, and self-care in just a few minutes (including carrying your own records and a summary of your medical history).
Ability to ask questions about your condition and how it will affect your school, work, recreation, and social life.
Ability to tell the doctor about your needs for education, technology, and accommodations and how your condition affects or might be affected by these.
Willingness to follow medical recommendations that have been mutually developed by you and your doctor.
More independence in following up with referrals and keeping all agencies informed.
More involvement in keeping yourself well with diet and weight control, exercise and recreation, following medication, treatment and hygiene regimens, limiting risk-taking behaviors (such as drinking alcohol, smoking, taking non-prescription drugs, or unsafe sexual practices), and getting help when you feel angry, lonely or sad for long periods.
Being more aware of your physical and mental symptoms and health needs before you have a serious me dical crisis and knowing when to inform your doctor.
Developing a plan for action for when you need emergency care: when to consult with the doctor, what hospital to report to, what care you want and do not want, and naming someone who can let your wishes be known if you cannot (health care surrogate).
Understanding how the health care benefits/insurance plan you have works for you: when to call for pre-approval, how to get reimbursements, what services are not covered, and how to file an appeal if you do not agree with decisions from the plan.
Recognizing that as you become more capable in directing your care that you, not your parents, should make medical appointments, be the most knowledgeable about your health needs, know when to seek guidance in solving problems, and demonstrate that you are capable and competent and ready for adulthood!
Source: KY Commission for Children with Special Health Care Needs: KY TEACH Project. http://chfs.ky.gov/ccshcn/ccshcntransition.htm
Nutrition and Arthritis
The quest for a healthy diet isn't an easy one. Talk to almost any person and you'll probably hear about foods they do and do not like. Throw arthritis into the mix and navigating toward sound nutrition can become much more difficult.
“It’s critically important that kids with juvenile idiopathic arthritis (JIA) get proper nutrition, but it can be more challenging because the kids’ appetites may be suppressed by the disease itself or by the medication they take,” says Daniel Lovell, MD, director, Division of Rheumatology at the Cincinnati Children's Hospital Medical Center.
Joint pain, fatigue, nausea and stomach pain all can take their toll on normal hunger cues. Kids and teens with jaw pain or temporomandibular joint disorder (TMJ) may have difficulty chewing or swallowing food.
Mechanical problems may come into play too, since cutting up and handling food may be hard for those with arthritis in the hands, fingers and wrists.
“One example is that children in school may not be able to open their milk cartons,” says Barbara Warady, RD, senior clinical nutritional specialist at Children’s Mercy Hospital in Kansas City, Mo. “They may not want to tell anyone that they can’t open them so as a result they just don’t drink the milk.”
When kids and teens with arthritis don’t eat enough to meet their nutritional needs they can become more vulnerable to other problems. Poor growth can certainly be caused by the disease or exacerbated by medications like long-term steroid use. But growth can also be impaired if children and teens don’t get the necessary amounts of protein, carbohydrates and other nutrients required to build bone and muscle. Malnutrition, anemia, nutrient deficiencies and osteoporosis may also result.
Fortunately these conditions occur far less frequently than they did even a decade ago due to advances in drugs. “Now we have treatments that are more effective and we can control the disease in the vast majority of children,” says Dr. Lovell. “If you can control the disease, then kids’ appetites improve, their energy is better, their joint pain lessens and they can be more active.”
Conversely, echoing the general rise in obesity among the U.S. population, some kids and teens with arthritis are too heavy. Low activity due to the disease may be partly to blame. Regular steroid treatment causes a dose dependent increase in appetite as well as fluid retention that can also be associated with increased blood pressure. “So if a child has steroids as a chronic part of their treatment then I think those children benefit from early and ongoing involvement with a nutritionist who can find creative ways to limit sodium and calories in the kid’s diet,” says Dr. Lovell. These children and teens must get adequate calcium and vitamin D since steroid use can cause re-absorption of calcium from the bones.
Registered dieticians can also offer ideas about how to deal with behavioral issues that sometimes arise. Having a chronic disease puts many stresses on children and teens that are out of their control. “Food can be one of the few things that children can control when they have active disease. So sometimes food becomes a control issue for families,” says Warady. She suggests parents don’t push food on kids or teens with low appetites because eating should remain a pleasant experience. But also avoid a situation where parents let kids eat whatever they want because they need to gain weight.
Another behavioral problem that more often affects teens rather than children is depression. When depressed, some kids will not eat enough while others will overeat.
Both Warady and Dr. Lovell have seen families who seek nutritional treatment approaches to their children’s JIA. Dr. Lovell says studies show about 20 percent to 30 percent of patients try alternative therapies, most commonly nutritional therapy.
“While very few reviews of these therapies have shown any ill benefits from trying these approaches, there’s no nutritional treatment approach that’s been proven effective for arthritis,” says Dr. Lovell. “The only time that I’ve run into real problems is when the parents are so focused on the nutritional approaches that they’re not willing to incorporate more standard type therapy and children end up losing time getting the disease under control.”
Warady stresses the need for families to tell their health care providers about any supplements, herbs or the like that their child or teen is taking. “There may be possible interactions or side effects they are unaware of with some of the things that they could be taking,” says Warady. Also with a product like omega-3 supplements parents want to make sure their child or teen is taking the right dose and not ingesting too much.
All in all, giving children the most nutritionally balanced diet possible combined with medical treatment that keeps their arthritis in check will go the farthest toward producing happy, healthy teens.
Credit: This material was originally prepared for the Arthritis Foundation and has been adapted for the purpose of the JA Transition Toolkit. All material is protected by copyright. More information can be found online at www.kidsgetarthritistoo.org