Financial, Insurance, and Legal Steps to Take Before Your Teen Gets Tested for Huntington’s Disease

For teens approaching adulthood in families affected by Huntington’s disease (HD), an inherited brain disorder that gradually affects movement, thinking, and mood and behavior, the possibility of genetic testing can bring a long-standing question to the forefront.

The choice on whether or not to test and what it means for your child’s future health may loom so large that some less emotional but still very important choices may get overlooked once the decision is made.

“After thinking about testing for months or even years, it’s common to want to move quickly once you finally decide you’re ready,” says Stacey A. Krueger, LCSW, clinical program manager at the Huntington’s Disease Society of America (HDSA) Center of Excellence at WashU Medicine in Saint Louis.

But rushing in without educating yourself about the process, the laws, and your options can be a mistake that can’t be undone, she says.

“I’ve had people call after testing positive and ask, ‘How do I get life insurance?’ only to find out they probably can no longer qualify,” says Krueger.

What Is the Genetic Information Nondiscrimination Act (GINA)?

The Genetic Information Nondiscrimination Act, or GINA, provides two major protections:

Health Insurance Health insurers cannot require genetic testing or use genetic information to determine eligibility or premiums.

An HD-experienced genetic counselor or social worker can help a young adult understand the different types of coverage, what GINA does and does not protect, and which questions they may want answered before testing, says Krueger.

Financial Considerations

HD can eventually affect a person’s ability to work, which can mean fewer years to earn income and build savings. That makes it especially important to understand the financial protections that your teen can put in place well before they are needed.

Disability Insurance This can replace some income if a person can no longer work because of a disabling condition. Coverage may come through Social Security or another public benefit system, an employer, or a privately purchased policy, or all three.

Long-Term Care Insurance This type of insurance helps pay for services such as assistance with bathing, dressing, or eating, whether that care is provided at home or in another setting.

Emergency Savings Parents can also help teens start with more basic financial habits. Building emergency savings can be especially difficult for families already affected by HD because of medical expenses, caregiving costs, long-term care, or a family member leaving work earlier than expected, says Krueger.

She encourages young adults to save when they can while avoiding either extreme — spending freely because the future feels uncertain, or becoming so worried about the future that saving takes over the present.

It’s also a good idea to teach teens to look beyond salary when considering a job, she says. “A job that pays somewhat less but offers strong disability coverage, sick leave, health insurance, or 401(k) matching may ultimately be more valuable than a higher-paying job with poor benefits,” says Krueger.

Special Needs Trust This type of trust can hold money or other assets for a person with disabilities while helping preserve eligibility for needs-based government programs such as Medicaid or Supplemental Security Income.

Legal Planning

Turning 18 brings legal independence all at once. A parent who has spent years scheduling appointments, talking with doctors, and helping manage healthcare no longer automatically has authority to receive medical information or make decisions for their adult child, says Krueger.

That doesn’t mean an 18-year-old has to navigate everything alone. If they want a parent or another trusted person involved, a few basic documents can make that possible while keeping the young adult in control:

Durable Power of Attorney (DPOA) for Healthcare or Healthcare Proxy This names someone to make healthcare decisions if the young adult becomes unable to make or communicate those decisions.

Having a medical DPOA doesn’t mean that you will continue to be “the decider,” for your child’s medical decisions, says Krueger. “These documents only come into play if a person who had capacity to make decisions loses it, temporarily or permanently.”

HIPAA Authorization This allows a young adult to decide who can receive information from their healthcare providers. A parent or other trusted person may then be able to help with appointments, referrals, questions, bills, or test results without gaining the authority to make medical decisions, says Krueger. She also suggests asking about giving someone proxy access to the patient portal.

Maintaining Privacy Around Genetic Testing

Before being tested for Huntington’s disease — and possibly even before the formal referral to a testing center — Krueger recommends that families begin to gather information.

“Once the referral is in your medical record, it is there forever, and if you want to get insurance later, there will be documentation on your medical record that you were referred for genetic testing — even if you never followed through with it,” she says.

Before your teen asks for a referral, Krueger suggests they reach out to an HDSA chapter, HDSA Center of Excellence social worker, or other HD-experienced professional who can explain the process and practical considerations. For them to truly give “informed consent” they need to educate themselves about not only the testing, but what needs to happen before and after, she says.

Before testing, useful questions to ask the center include:

• What information will become part of my medical record?
• What information will my health insurer receive if I use insurance to pay?
• What is the full cost if I pay out of pocket?
• How will my genetic test results be stored, and who can access them?
• How will the testing team contact me, and can I choose which communication methods are okay?
• Can I speak with a genetic counselor or HD social worker before a formal testing referral is placed?

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