Financial Advocacy in RARE: Navigating the U.S. Health System for Young Adults

Lisa James

Dec 12, 2022

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Introduction - Preparing for Transition

The transition to adulthood is a process and the experience of becoming an adult is different for everyone whether or not you have a rare disease. But if you have a rare disease, there are some extra challenges to think about, including navigating the healthcare system. Whether you are heading to college, into the workforce, or living at home with parents, you’ll need to know how to get health insurance coverage, find healthcare providers who understand your needs, and advocate for yourself when you need care. Knowing these basics and having plans in place can help to reduce lapses in health insurance coverage and ensure you have access to the medical care you need.

This guide provides information and tools to help you have purposeful conversations with your family and care providers about care transitions. These conversations can prepare you to make the transition into adult care, set health goals, and work with your adult care team.

Preparing for health care as an adult means:

You will see health care providers that focus on health care for adults.
Your health care providers will talk to you directly about your care plan and test results.
You get to decide who knows about your medical condition. The Health Insurance Portability and Accountability Act (HIPAA) prevents your doctor from sharing information with anyone without your permission. You have the option to sign a waiver that allows doctors to disclose your health information to a parent or caregiver.
Your parents will no longer have access to your medical information, unless you give permission for them to do so.
You will be responsible for making appointments, filling out forms, and tracking your medications.
You have the right to decide whether or not to participate in clinical research trials if there is one that addresses your condition.

"When it comes to any major decision, especially when it comes to your journey with your rare disease, it’s not about somebody telling you how to do it. It’s being empowered to ask all the questions you have.”

– Chandler Swope, LICSW, Director of Youth Services US, Huntington’s Disease Youth Organization

Create Your Transition Plan

Early adulthood spans ages 15 to 26. But the age of 18 is considered the age at which you can legally make decisions about your own health care. As you approach 18, it’s helpful to start thinking about what you need to know to manage your own care. The earlier you begin thinking about your transition to adult health care, the more time you will have to prepare. When you feel ready to move to adult care, talk with your pediatric doctor to see if they can help you plan your transition over time. Some pediatric health systems have structured plans to support the transition to adult care that:

Assess for transition readiness;
Enable young adults to communicate directly and establish a relationship

with adult providers while still receiving care in a pediatric setting; and
Provide a written summary of medical care or a plan of care.

Got Transition is a federally funded national resource center on health care transitions (HCT) that aims to help young adults move from pediatric to adult health care. Got Transition has developed Six Core Elements of Health Care Transition as a guideline for providers and young adults moving from pediatric to adult care.

The following health systems provide information about interdisciplinary teams or services that support young adults who are moving from pediatric to adult care.

Adult Care and Transition Team, Children’s Hospital of Philadelphia
BRIDGES Adult Transition Program, Boston Children’s Hospital
Nemours Children’s Health System
Riley Children’s Health/Indiana University Health
The Transition Medicine Clinic, Baylor Medicine

If your hospital does not have an adult care and transition team, the following types of providers can help you plan your transition and navigate health care.

Care managers (often nurses)
Clinical social workers
Community health workers
Complex care team
Nurses and nurse practitioners
Pediatricians

Your Primary Doctor is Your Quarterback

The doctors and healthcare providers available to you as an adult are largely driven by what your health insurance plan allows. The following steps can help you find a provider within your plan who is accepting new patients and who will act as your quarterback—helping you to maintain your overall health, treating any symptoms, approving medical equipment, and referring you to relevant specialists:

Ask your current doctors if they can recommend adult providers who might be a good fit for you.
Obtain a list of providers that your health plan allows (in-network) from your insurance company’s website.
Patient advocacy organizations that focus on your rare disease can provide support and information on adult providers and specialists.
The National Institutes of Health Genetic and Rare Disease Information Center provides guidance on finding specialists.

Advocate for Your Health

The adult-oriented health system you transition into might be unfamiliar with your rare disease. You may also have to visit more than one clinic, provider, or hospital. In order to advocate for yourself, you will need to be able to describe your healthcare needs and ask questions that help you understand medication instructions, billing, and other topics.

Develop an elevator pitch. Develop an elevator pitch that allows you to quickly share your story with others, describe your symptoms, and outline your needs.
Invest in your knowledge bank. Clinical social workers, nurses, and psychologists can help you identify health goals and access resources that may have nothing to do with your rare disease, like preventive, sexual health or mental health care. These professionals can also talk with you about birth control, sexually transmitted disease screening, and safety around alcohol, drugs and cigarette smoking to help you weigh the risks and identify potential consequences.
Be your own care coordinator. When you are establishing yourself as a patient with a new doctor or a new clinic, you can support the communication process between providers, especially if you are seeing more than one provider, or providers at different clinics. Create an organizational system that works for you, for example, a calendar to document your appointments. Use the patient portal to ask for your medical records to be sent from your current provider to your new doctor or care team.
Build your conversation skills. Practice what you are going to say to your new doctor with a friend or family member so that you can build confidence in sharing your story, asking questions, and setting health goals.
Get involved. Connecting with a disease-specific patient organization is a great way to find other young adults who have your condition or are dealing with similar issues. Getting involved can mean supporting others, advocating for change, learning about your rights, and sharing your story.
Assert your autonomy. Acknowledge your interdependence. As you transition into adulthood and assert your voice, your parents might also continue to be caregivers, advocates, and financiers. It can be helpful to acknowledge that everyone needs love and support from family, friends, and peers who understand what it’s like to live with a rare disease.

“We have to teach ourselves how to utilize resources, how to ask, how to advocate. Advocacy is a really, really big thing when you become an adult with a disability because you’re transferring the voice, the shift of power is transferring from your parent to you because you are of legal age. I’m finding that autonomy and self- assuredness with being able to plug into the community, and being able to plug into networks with other adults where we can kind of all talk to each other. “

– Rasheera Dopson, Patient Advocate & Founder, Beauty with a Twist

PRO TIPS

Meet with adult providers while you are still being cared for by your pediatrician. Get to know who you’re going to be working with in the future. See the Global Genes Taking Control toolkit for examples of questions to ask your new doctor.
Start talking about care transitions with your family and doctors before you need to make the move to an adult care provider. The Child Neurology Foundation recommends beginning these conversations around the age of 12 and tracking progress toward self-care yearly.
Take the Got Transition quiz to see if you are ready to transition to adult care.
Assess your readiness for transition using this Got Transition tool.
Find out if your pediatric providers have a transition clinic, plan, or checklist.
Ask your current doctor to share a medical summary of your condition with your new adult provider. You can also create a medical summary and emergency plan to share with your adult providers or use the Medical ID feature on your smart phone.
If you want to allow providers to share your medical information with a parent or guardian, ask for a medical release form.
Identify someone you trust to be your healthcare proxy, in case there are times when you are unable to be the decision-maker about your health.
Keep track of conversations with your doctor.
Create a timeline to keep yourself on track.

“I write down the last thing that I spoke to that doctor about. It helps you going into the next one. If you were last talking about trying a new medication, I write that on the notes on the calendar and that helps me keep track at my next appointment. It’s the same with ordering medications. The problem is that medication all run out at different times, so sometimes you get a month’s dose or four months. You don’t order all of your medication or all of your equipment all at once. You have to plot it.“

– David Rose, Living with Occipital Horn Syndrome, Business Development at Rare Revolution Magazine

Navigating Health Insurance in the United States: Types of Health Insurance

When you transition to adult health care you will also need to think about how to pay for your health care. The primary purpose of health insurance is to help to pay for health care, including providers, medications, preventive screenings, and other medical services. As the policyholder, you pay a premium and the insurance company pays for some or all of the costs of your care. Health insurance is either provided through the government (public) or commercial plans (private). Health insurance plans vary in terms of what they cover, the deductible that you have to pay before the plan will start paying for care, and the level of copay. The coverage in health insurance plans can also vary from state to state.

PRO TIP

– When you are buying insurance, review the policies to make sure the plan covers your medications, primary care providers, and specialists. The top three things to analyze your monthly premium, your out-of-pocket maximum, and co-insurance. Co-insurance in particular can get very expensive for people with rare diseases. For instance, a co-insurance of 20% for a bill of $100,000 is $20,000, regardless of the out-of-pocket maximum.

Preparing for health care as an adult means:

Is my rare disease covered as part of the major medical insurance plan?
Does my plan cover specialist care, physical therapy, or long-term therapy?
Are my regular medications covered before I have to meet the deductible?
Are my current doctors in-network?
Do I need a referral from my primary care provider to see a specialist?
Is preauthorization required before treatment?
Will I need to do step therapy before I can use certain medications?
Is the medical equipment I need covered?
How much will it cost to see a doctor if they are out-of-network?
What is the co-pay?
Will I need to do step therapy before I can get the drug my doctor recommends?
Does my plan provide coverage for preventive care, reproductive health, and mental health?

PUBLIC HEALTH INSURANCE - Medicaid

If you are not covered by your own or your parent’s employer-based health insurance plan, you might qualify for Medicaid. Medicaid is a joint federal and state health insurance program that helps people with low incomes, people with disabilities, and people who are receiving Supplemental Security Income (SSI) pay for health care. In most states, if you are already receiving SSI you qualify for Medicaid and are automatically enrolled when SSI is awarded. In some states (e.g., Massachusetts) you may be able to stay on your family’s Medicaid plan until you are 19 years old (Table 1). Learn more about Medicaid eligibility and enrollment at the Social Security Administration.

TABLE 1. STATES WITH AUTOMATIC MEDICAID ENROLLMENT

Alabama	Kentucky	North Carolina	Arizona	Louisiana
Pennsylvania	Arkansas	Maine	Rhode Island	California
Maryland	South Carolina	Colorado	Massachusetts	South Dakota
Delaware	Michigan	District of Columbia	Mississippi	Tennessee
Texas	Florida	Montana	Vermont	Georgia
New Jersey	Washington	Indiana	New Mexico	West Virginia
Iowa	New York	Wisconsin	Wyoming

Although Medicaid pays 100% of most medical expenses each state has its own eligibility requirements and decides which services to cover. People who have incomes that exceed the limits set by the state in which they live, may qualify for Medicaid eligibility under “spend down” rules that allow them to subtract medical expenses from income to gain eligibility. Make sure to check coverage across state lines if you will be traveling for medical care.

You can learn more about your state’s program and apply for Medicaid through the Health Insurance Marketplace or through your state’s Medicaid agency.

Healthcare Insurance Marketplace or Exchange

If you are not eligible for Medicaid, or do not have employer-based insurance, you can shop for health insurance plans in the online marketplace. The federal government operates the health insurance marketplace. Some states run their own marketplaces or exchanges. Although there are specific times for enrollment (Open Enrollment usually occurs toward the end of each calendar year) you can also enroll if you lose access to your own or parental employer-based insurance when you turn 26 through a Special Enrollment Period. HealthCare.gov is a good place to start shopping for Marketplace plans.

PRO TIP

– If you are shopping on the Health Exchange for insurance, get several quotes and compare different plans. Check out www.healthcare.gov. Give yourself at least six months before you need the insurance to shop around.

Catastrophic Insurance. The Health Insurance Marketplace also provides plans for catastrophic coverage if you are under the age of 30. These plans have high deductibles that protect against very high medical expenses (e.g., extended hospitalization, surgery).

Dental Insurance. You can shop for dental insurance on the Health Insurance Marketplace. Some dental benefits are included in health insurance plans while others are separate, stand-alone plans. Dental plans can only be purchased on the Health Insurance Marketplace if you are buying a health plan at the same time.

Medicare. Medicare is a federal health insurance program for people who are 65 years or older, certain people under 65 years with disabilities who receive Social Security benefits after a two-year waiting period or have certain diseases (i.e. amyotrophic lateral sclerosis (ALS) and end-stage renal disease (ESRD)). In some states (e.g., Massachusetts), both Medicare and Medicaid are available as dual coverage.

Premium Tax Credit. Coverage with a health insurance exchange plan could be more affordable than you think. According to research by the Young Invincibles more than 8 out of 10 people who enroll in a Health Insurance Marketplace plan through HealthCare.Gov qualify for financial help. If your estimated income falls below 100% and 400% of the federal poverty level for your household size, you may qualify for a premium tax credit. This credit will lower your monthly insurance payment. You can check your eligibility for a premium tax credit here.

“Health Exchange plans only cover providers within a certain geographical area and may not cover providers who are outside that geographical area (out-of-network). Another challenge that a lot of rare disease patients have is that there may be one specialist in the country that can see them, and that person is definitely not in their network. But many of the Exchange plans are administered by the same company. If the specialist you need to see is in another state, find out if the company administering your Exchange plan has a similar plan in the state where your specialist practices. For instance, if your plan is Ambetter Sunshine Health in Florida and your specialist is in Texas, call the insurance company to see if there is an Ambetter in Texas.”

– Candace Lerman ESQ., Patient Advocate, Rare Candace

Employed Individuals with Disabilities

Employed Individuals with Disabilities (EID) is a state regulated program that allows people with disabilities who are employed to buy Medicaid health benefits for a fee. Check to see if your state offers Medicaid.
Your private or employer-based health insurance might not cover all the services and support that you need to live independently, such as medical equipment or personal assistive devices. The Medicaid Buy-In Program offers coverage for people with disabilities who need assistive devices as a support to allow them to keep working.

PRIVATE HEALTH INSURANCE

Parent Employer-Based Insurance

If you are 26 years old or younger and are already covered under a parent’s employer-based insurance plan, you can remain on that plan whether or not you are a student, live at home, are single or up to age 26. However, if you live or go to college in another state your care would likely be considered out-of-network. The costs for out-of-network care are usually much higher than in-network. Also, if you stay on a parental plan, information about your use of health services will appear on the insurance bill even if you have not elected to sign a HIPAA waiver. So whoever pays the bill would know which health services you are using.

Your Own or Spouse’s Employer-Based Insurance

Employer-based insurance plans are available for full-time employees, and, in some cases, part-time employees. These plans share the cost of buying health insurance with employees. Some employers offer one type of plan only and others allow you to choose which insurance is best for you from a range of plans. Companies that provide plans for employer-based insurance include Blue Cross Blue Shield, Cigna, Aetna, and United HealthCare. The cost of the plan (the premium) varies depending on the plan and is automatically deducted from your paycheck. Employer-based plans can change year-to-year. These changes can mean that you might also have to change providers.

PRO TIPS

If you are working and lose coverage from a parent’s employer-based plan, you are entitled to enroll in your own employer’s plan. Contact your Human Resources (HR) representative at least 30 days before you turn 26 to learn about your next steps.
Check that any plan through your employer or your spouse’s employer covers your condition. When you enroll in employer-based insurance, ask your HR manager for the name and contact details of the insurance plan representative. Call them by phone or email, introduce yourself, and ask to discuss what the plan covers.
You get to decide whether to tell your employer that you have health conditions. If you work for an employer that is aware of your rare disease and you have questions about your health insurance benefits, HR can walk you through different options for your health insurance.
HR should also be able to tell you if your employer offers a health savings account (HSA). This account can help you set money aside for unanticipated and out-of-pocket costs.

Student Health Programs

Student Health Insurance Plans (SHIP) are another option for health insurance if you are attending college or university. Student health plans use financial aid to pay the cost of coverage and provide most medical services on campus. If you opt for college health insurance coverage, make sure the plan covers your condition and access to specialists who are likely to be off-campus.

COBRA

If you leave your job, or are about to graduate from college, the Consolidated Omnibus Budget Reconciliation Act (COBRA) allows you to keep your health coverage for 18-36 months until you find an alternative plan. COBRA is usually more expensive than the premium subtracted from your paycheck as part of employer-based insurance. Under COBRA, you are liable for the full premium and you must enroll within 60 days of leaving your job.

TRICARE

TRICARE is a regionally managed health care program with different health plan options for active-duty service members, National Guard and Reserve members, retirees, their families, and survivors. If you are aged 21 to 26 and a dependent of an eligible service member you may be eligible for insurance through the TRICARE Young Adult Prime program. To view a list of all available plans and eligibility criteria, visit: http://www.tricare.mil/

Short-Term Plans

Short-term insurance plans provide coverage from 30 days to 12 months. Be aware of short-term plans. These plans can deny coverage or benefits based on your medical history, allow annual or lifetime limits on covered benefits, and decline to cover services. These plans rarely cover mental or prescription drugs and do not comply with current law under the Affordable Care Act.

PRO TIPS

Talk to with your parents to identify expectations about how the costs your care will be covered and who will cover those costs.
Create a budget. If you are currently covered by your parents’ insurance, try to get your statements for the past few months or years and analyze your average monthly costs associated with those plans for the following items:
- Annual visits with your primary care provider and specialists.
- Prescription drugs that you take regularly.
- Medical supplies (e.g., injections, equipment, supplies, procedures)
- Use the Health Insurance Cost Profile tool to track your health insurance expenses.
Health insurance brokers are knowledgeable about available plans and can help you compare plans. You can also compare plan types at #healthyadulting (a toolkit from Young Invincibles).
Keep your insurance information where it is easy for you to find and,
if necessary, share with a designated family member or friend if you become incapacitated. The Global Genes RARE Toolkits™: Navigating Health Insurance can help you keep your insurance profile and medical information together in one place.

Stuck in Denial?

Your health insurance company might not be familiar with your rare disease or have an ICD code. As a result, your insurance company might deny your claim for treatment
or care costs. A denial for care means that the insurance company will not pay the full or any amount toward the cost of care. You may need to discuss elements of your condition which do have diagnostic codes so you can access care.

Insurance companies typically deny requests for the following reasons:

There is no ICD code for your condition.
The provider is out-of-network.
The treatment or medication is not considered medically necessary.
Preauthorization or pre-approval was required but not submitted to the health insurance company.
There are documentation errors.
The service or item is not covered by the policy.

ICO CODES

Health care services in the US are reimbursed on the basis of International Classification of Diseases, 9th Revision (ICD-9) or ICD-10 codes. Of the approximately 5,500 – 9,000 rare diseases, only 500 have a specific ICD diagnosis code. When there is no specific code, providers use codes that describe symptoms but not the underlying disease. This means that patients and providers often have to make the case for each care step, including not only therapies, but also equipment or procedures, and often have to pay more out-of-pocket for these services.

SELF ADVOCACY ACTION: GO STRAIGHT TO THE SOURCE

Ask for the explanation of benefits and the denial of coverage from your insurer so that you are clear about the grounds of denial.
You might need to educate your insurance company about your disease and your needs. Share your rare disease story and why your circumstances might require an “exception to the rule” approval.
As the expert in living with your disease, you can help the insurance company understand why you need the treatment. Practice what you are going to say with a friend or family member so that you can feel confident being on the phone with insurance representatives.
Call the nurse hotline for your insurance company—nurses are usually in tune with what’s going on in other departments. If a nurse isn’t available, ask to speak to a supervisor.
Write down who you speak to, the date, time, and anything that the insurer needs from you.
Ask your doctor to initiate the appeals process.
Don’t take no for an answer. Be polite and persistent and you’ll get the answer you need.
If you come to a dead end, find a health lawyer in your state who can assist with insurance appeals and represent you in court.
The RARE Toolkit on Navigating Health Insurance has additional information on this topic.

Tips For Managing Access To Care

Negotiate

“Don’t be afraid to negotiate a deal with your providers if they are not covered by your insurance plan. I have a physician I pay to see and I worked out a deal to pay cash. Now with COVID and telemedicine, more providers will be able to have a video chat, which costs less than an in-office visit.”

– Candace Lerman ESQ., Patient Advocate, Rare Candace

Telehealth

If you need to see your provider but can’t physically make an office visit, some insurance companies cover telephone access to in-network providers or contract with telehealth providers with very low copays (e.g., LemonAid). Many states mandate that Medicaid and private insurers provide coverage for telehealth to the same extent as coverage for in-person/local care. However, states vary in how they define, reimburse, or regulate telehealth. Telehealth might also be an option if you need to see a specialist who is geographically distant or outside your plan’s network.

Prescription and Patient Assistance Programs

If you do not have health insurance or are without prescription drug coverage access to medicines, prescription assistance services like the Partnership for Prescription Assistance, Medicare’s Pharmaceutical Assistance Program, or the Patient Advocate Foundation provide guidance about drug manufacturer patient assistance programs and connect patients who qualify to medications and for free or at minimal cost. Patient Services, Inc. (PSI) provides financial support and guidance for qualified patients with specific, rare chronic diseases. The following services provide additional information, including about medication coupons and rebates:

Telehealth Drug Manufacturer Patient Assistance Programs (PAPs)

Drug manufacturers’ patient assistance programs (PAP) can help pay for medications if your insurance plan denies coverage for a particular drug. Many of these services are provided via third party arrangements with patient advocacy or other groups. PAPs can assist with the following services:

Assign a case manager who will contact the insurer on your behalf, determine whether the drug is covered, identify what your benefits are, and appeal a denial if necessary.
Work with your doctor to provide information to the insurance company that explains your diagnosis, tests results, treatment decisions, and why a specific drug is needed.
Provide copay cards or coupons to reduce the cost of the drug.

Specialty Pharmacies

Specialty pharmacies manage medications for rare diseases, including orphan drugs. Your health insurance plan will likely choose a specialty pharmacy that is in-network. Many health plans require prior authorization for access to specialty medications, which can involve considerable documentation. The specialty pharmacy can help with prior authorization paperwork to help with access to medications and copay assistance programs. Plan ahead to avoid delays due to processing of your paperwork.

You expect the doctor to write the prescription, go to your insurance and then get to the pharmacy. But a lot of times there is a disconnect. One medication in particular goes through a specialty pharmacy. I was having to call my doctor to make sure that they sent the information. Then I was having to confirm with the insurance that they received it, and that the pharmacy received stuff. When I didn’t get the answers I wanted, I’ve had to kind of call all three to see where that disconnect is, and make sure that that communication stays going so that I get the care I need so I don’t run out of my medications. I do the calls in batches and then I do have to de-stress.

– Lindsey Kizer, Rising Voices of Narcolepsy Advocate, Project Sleep

Shop Around

Shop around for tests and services to get the best price. For instance, you might be able to purchase a stand-up MRI for $399 versus $700 via the out-of-pocket with your insurance. The health coverage clock resets in January, so if you have a bill in January that $400 cash and $700 out-of-pocket, it may be better to take the $700 bill just because that puts you a little closer to the out-of-pocket maximum. But if you’re in November or December, consider finding a cash price that is cheaper than the out-of-pocket cost. Find a checklist here to help prioritize the benefits you need in your health insurance plan: RARE Toolkits™: Navigating Health Insurance.

Navigators

Your hospital or provider might provide access to financial navigators who are trained to provide guidance and direction toward resources to reduce the costs of care and medications. Ask your provider if they can put you in contact with a financial navigator.

Transport and Other Care Costs

Transport costs for treatment can add up. Many treatment centers or research institutions have free transportation or campus shuttles. A social worker or patient advocate might be able to help you with access to those and other services such as nutritionists. Keep track of and save receipts for your mileage, tolls, and other transport costs, as these can be a tax write-off.

ADDITIONAL RESOURCES

The RARE Webinar series on Navigating Health Insurance Issues has additional information on health insurance navigation.
Search for information about how to buy health insurance and coverage in your state at: https://www.healthinsurance.org/
NORD’s state-insurance map provides state-specific resources related to health insurance.

Independent Living

Young adults with access to resources that support independent living and/or quality care early on in the transition process are better equipped to manage stress, emerging symptoms, or disease progression. Here are some resources to help you make decisions about planning your finances and savings.

Whole or Term Life Insurance

Life insurance can be valuable if you have a rare disease that requires expensive care if your condition worsens. Life insurance provides financial support to someone after you die (a beneficiary) but there are ways to add riders to your policy so that you can access the benefits of the policy while you are living.

Living benefit riders (also known as accelerated death benefit riders for terminal, critical, or chronic illness) provide benefits if you are unable to perform activities of daily living and require daily or long-term care. These riders vary by type and insurer. Your diagnosis, time since diagnosis, and treatment and overall health influence the premium cost. Simple issue or guaranteed life insurance might be options if you are denied life insurance and are within a certain age range. These policies come with a higher premium and less coverage than whole or term life insurance. Other insurance options include employer-based group life insurance. Check out your state’s department of insurance life insurance guide for more information.

“If you anticipate having an inherited disorder but have not yet been diagnosed, consider acquiring life insurance and long-term disability insurance prior to diagnostic testing. For instance, in Huntington’s Disease a positive gene result can limit your ability to get long-term life insurance and long-term care policies. Have conversations about the impact of long-term financial planning, including options for family planning, such as pre-implantation genetic testing (PGT-M) with in vitro fertilization (IVF).”

– Chandler Swope, LICSW, Director of Youth Services US, Huntington’s Disease Youth Organization

Disability Insurance

Having private health insurance does not necessarily provide all the benefits or services that young adults with rare diseases need, such as the cost of home healthcare, travel costs associated with your medical care, or buying food that is appropriate for your diet. State-based or federal resources can provide income support for young adults with rare diseases through disability benefits, even if they have not been employed and contributed to Social Security. Other financial assistance and support services potentially available for people with disabilities include housing programs, vehicle modification, service and emotional support animals, and tax assistance. Young adults can apply online for disability at https://www.ssa.gov/benefits/disability/.

PRO TIPS

Social workers, case managers, and financial navigators can help you find resources for uncompensated care through financial assistance and insurance optimization. They can also help you prepare application documents that you will need to submit for insurance purposes and point you in the direction of resources to help with travel costs associated with your medical care.
Social workers at rare disease Centers of Excellence (e.g., Huntington’s Disease Society of America Centers of Excellence) are well-versed in available state-based resources and community-based programs.
Connect with groups that advocate for your rare disease for peer and community support, if there is no group you may consider starting one. Talk to people who can share how they navigated disability and insurance application processes.

Social Security Disability Insurance (SSDI). SSDI is reserved for people with disabilities who have paid Social Security taxes and worked long enough to earn work credits. There is a five-month waiting period for SSDI. People who have received SSDI benefits for 2 years are eligible to receive Medicare. Some patient advocacy groups are lobbying for Medicare to waive this two-year waiting period.

Compassionate Allowances. The Social Security Administration uses a Compassionate Allowances program (CAL) to identify disease and conditions that meet the Social Security’s standards for disability benefits. CAL includes some rare disorders that affect children. This program can reduce the waiting time to reach a disability decision. You can check the list of rare disease on CAL here.

Achieving a Better Life Experience (ABLE). ABLE is a tax-free savings account that you can set up and use to pay for disability-related expenses such as education, housing, and health without losing benefits. If you are eligible for SSDI and/or SSI you might be eligible for ABLE. Find out here if you are eligible.

Short-Term Disability. Some states offer short-term disability insurance for 6 to 12 months.

Long-Term Disability (LTD). Employer-based or private LTD policies are options to consider if you are employed and anticipate having a rare disease but have not yet been diagnosed. LTD provides a proportion of wage replacement. The extent of benefit varies by policy. Learn more about LTD from the Patient Advocate Foundation.

Supplemental Security Income (SSI). SSI is a Federal income supplement program funded by general tax revenues that provides monthly cash for people with disabilities and little or no income to meet basic needs for food, clothing, and shelter. If you received SSI as a child, you must reapply for benefits at age 18. Most SSI recipients are eligible for Medicaid. In some states, SSI recipients automatically qualify for Medicaid and do not have to apply. In other states, SSI recipients are eligible but will need to apply for Medicaid.

Benefit Eligibility Screening Tool (BEST). BEST is a good place to check if you are eligible for social security benefits.

The Social Security Act defines disability in three parts:

The person must have a severe impairment that prevents them from doing work that they did in the past, and it must prevent them from adjusting to other work.
The person must be unable to earn above Substantial Gainful Activity (in 220, this figure was $2,110/month).
The impairment must have lasted or is expected to last continuously for not less than 12 months or is expected to result in death.

WHAT HAPPENS IF MY SSI APPLICATION IS DENIED?

Appeal in writing within 60 days of receiving the denial letter.
Involve your health care team in all stages of the appeals process.
Learn more about the appeals process here.

PRO TIP

As a young adult with a rare disease you may/might have symptoms that need medical equipment or assistive devices like a wheelchair or a cane, or other kinds of special support. For instance, maybe heat makes your symptoms worse and you need accommodation with really good air conditioning. Or you have flare-ups and need to take extended periods off work. Contact your local city/county government or state social services agency for information on medical and health services available in your area for people with disabilities. If you use assistive devices plan ahead for any transportation considerations you may need to make that can impact the cost associated with travel back and forth from medical visits.

Employment, Education, Housing

As a young adult with a rare disease you might be considering additional schooling, heading into the workforce, living with other peers or friends, or living with parents or caregivers. And when you have a rare disease, it is important to manage work, education, and home life in a way that also allows you to prioritize your health.

Employment

Full-time employment is not the only way to be part of the workforce. If you are eligible for supplemental security income (SSI), you can be employed part-time and have more time to prioritize your health.

People receiving SSDI or SSI disability benefits can get help with free training to prepare them for work through the Social Security Administration Ticket to Work program. The program provides resources and support for finding a job and access to employment networks.
Chronically Capable provides information about flexible jobs for people who are chronically ill or disabled.

Education

If you are heading to college, talk with disability services or the accessibility office on campus to ensure you have the support you need during term-time, including academic adjustment. Academic adjustment allows for some flexibility in how students participate in college classes and activities. The Hemophilia Federation of America has a range of resources for young adults with rare diseases who are thinking about college, including information on whether you should, and to whom you should disclose information about having a rare disease and emotional health and self-care.

Scholarships are available to cover some of the costs of college.

General scholarships for individuals with rare diseases who are pursuing education and training are available through application from the Everylife Foundation for Rare Diseases, the Healthline & NORD Stronger Scholarship, and the Biomarin RARE Scholars program.
Find a list of other college-focused programs for individuals with rare diseases at Global Genes.

COLLEGE QUESTION CHECKLIST

Before you head to school, here are some things to consider.

Are your immunizations up to date?
Do you know where to order any medical supplies you need?
Do you have a local medical team who can help you with refills, acute treatments in between your regular check ups? Do they have access to your medical chart and your primary team.
Who has access to your medical records?
How will you balance care appointments with college work and deadlines?
If you are moving to another state which pharmacy will you use?
Where will you receive care during the school year?
Are you tele-visiting with your providers during term-time or scheduling your appointments around breaks where you might be home? Will this be covered by your health insurance?
Do you have access to a patient portal that allows you to access and share your records?
What are your college’s policies for missing classes or classwork due to illness?

Housing

The costs of living are always more than you might expect and it’s helpful to set a budget for your basic needs. Housing can be especially expensive if you are collecting SSI or working part-time. Kiplinger’s Household Budget Worksheet is a tool that can help you calculate monthly expenses for housing, utilities, food, and other costs of living. Social workers, case managers, or housing organizations can also help with the application process for public or low-income housing.

Taking Control: Gaining Independence as a Young Adult with a Rare Disease is a Global Genes Rare ToolkitTM that describes a range of resources to support independent living as a young adult with a rare disease.

Glossary

Claim: A request for payment that you or your healthcare provider submits to your health insurer after you receive medical services and/or other items like medical equipment.

COBRA: Consolidated Omnibus Budget Reconciliation Act (COBRA) is a law that allows you to take your group health insurance policy when leaving employment. Under COBRA, you are responsible for the full cost of premiums, as well as administrative fees.

Coinsurance: An amount you pay for services even after the deductible is paid. Coinsurance may be a percentage amount. For instance, you pay 20% of the cost of services or drugs and your employer pays 80%.

Coordination of benefits: A way to determine which health plan is responsible for paying a claim when your healthcare is covered by more than one policy.

Copay: A fixed amount you pay for a specific service (e.g., visit to the doctor’s office), procedure, or drug.

Cost-sharing: The amount you are responsible for paying out-of-pocket under your plan for covered services, excluding the cost of premiums and non-covered services.

Deductible: The amount you pay out-of-pocket toward health costs before your insurance begins to cover costs. A policy may have different deductibles for certain aspects of the plan, such as prescription drugs.

Denial: The decision by a health insurer to refuse payment for a specific service, treatment, drug, and certain medical equipment/supplies.

Exclusions: Conditions or treatments that a health insurance plan will not cover.

Health savings account (HSA): An account you can use to save money toward health costs and expenses that your insurance does not cover. If you do not use all the money in a calendar year it rolls over to the next year.

In-network providers: Doctors and other providers that are included in your health insurance plan and that provide services for discounted rates that lower any costs you might have to pay.

Health Maintenance Organization (HMO): Provides health services through a network of doctors, hospitals, clinics, and laboratories that are either employed by or contracted with the HMO. These plans generally won’t cover out-of-network care except in an emergency. HMOs often provide integrated care and focus on prevention and wellness. Patients are required to have a designated primary care physician, who will direct you to specialists as needed. If you use doctors or hospitals outside of the network, you may have to pay the full cost of these services.

Major medical: Comprehensive and long-term coverage that usually includes doctor’s office visits, hospitalization, medical supplies and services, prescription drugs and other healthcare expenses.

Out-of-network providers: Doctors and other providers that are not included in your health insurance plan. You usually have to pay out-of-pocket to see these providers.

Out-of-pocket maximum: the total amount of money your plan expects you to pay in a calendar year for health care.

Patient portal: A secure online website that provides 24-hour access to your personal health information, including doctor visits, discharge summaries, and lab results. Some patient portals allow you to message your providers and request prescription refills.

Pharmacy benefit: The prescription drugs a health insurance plan covers under its drug benefits policies. This list may be called the medical benefit formulary list or the drug list.

Point of Service: A plan that provides greater flexibility for patients to use doctors outside of its network. Under a POS plan your primary care physician can refer you to a doctor in or out of the network, however, using doctors in the network cost less than using doctors outside the network.

Pre-authorization: Process in which your health insurer decides whether a treatment plan, procedure, or prescription drug is medically necessary.

Preferred Provider Organization (PPO): A group of providers that that sell their services by contract to health insurance companies. PPOs allow greater flexibility to use providers outside of the plan’s network. Using doctors and hospitals in the network cost less than using those outside of it; but unlike a Point- of-Service plan, you do not need a referral from your primary care physician to use the services of a specialist.

Premium: The monthly fee you pay for coverage. Policies with lower premiums often require you to pay higher deductibles and copayments for medical services. A policy with a low premium does not mean it is the least expensive.

Referral: In many plans your primary care doctor must refer you to see a specialist.

Step therapy: requires you to try one or more medications that are approved for your diagnosis before moving or “stepping up” to a therapy that might not be approved but is effective for your diagnosis.

Additional Resources

Organization	Program Focus
Chart Your Own Course Program	Educational scholarship program to help students in the lysosomal storage disorder (LSD) community pursue their educational dreams.
Chive Charities	Provides financial support for therapy equipment and sessions not covered by insurance, mobility items, developmental and learning devices and other medical needs as recommended by a medical professional.
Disability Rights California	Information and resources concerning disability rights related to education, employment, housing and more.
EveryLife Foundation Rare Giving Program	Program that supports individual rare disease patients as well as organizations that promote collaboration across rare diseases and engage patients, researchers and others in the community in public policy.
Families USA	Promote high-quality, affordable health care for all Americans
Global Genes	Navigating Health Insurance, 5 Essential Tips and Tools for Effective Fundraising, RAREList
Huntington’s Disease Youth Organization	Support and education to young people (aged up to 35) impacted by Huntington’s disease (HD) around the world
NORD Patient Assistance Program (RareCare)	Assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These 57 programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Patient Advocate Foundation	Patient services, information and resources to support access to health care.
#RAREis Scholarship Fund	To enrich the lives of adults living with rare diseases by providing support for their educational pursuits
The Assistance Fund	Independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.
The Patient Advocate Foundation	Insurance Denials & Appeals National Financial resource Directory