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.
Eligibility and the amount of income available can depend in part on how long someone has worked or paid into a plan, so learning about these benefits early in a career can matter.
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.
People with a family history of HD typically don’t qualify for this type of insurance unless they already have a negative gene test.
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.
When properly set up and used, assets in the trust typically don’t count toward those programs’ asset limits. Because these trusts have specific legal and tax requirements, families should work with an attorney who has experience in special needs or estate planning.
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