The HDSA Disability Umbrella
One of the biggest misconceptions about disability in the context of Huntington’s disease is that it is just one thing: a benefit. Disability benefits are very important benefits for the HD community, but they are just one section of the larger disability umbrella. All of the sections of Disability Umbrella are important, especially in the context of HD. An umbrella missing a section means you have a broken umbrella, which will not keep you dry in the rain.
There are six categories that make up the HDSA Disability Umbrella:
· Disability Insurance benefits – Disability benefits is a broad category that includes private benefits, employer benefits, and Social Security benefits. Understanding the relationship between the different types of disability benefits will help make sure you have the right coverage and will help reduce the amount of time you go without income. It is also important to know that not everyone pays into Social Security and some pay into a separate state program or a private 401(3)(b) instead.
· Health Insurance – Health insurance includes private insurance, Medicare, and Medicaid, all of which you will likely encounter with an HD diagnosis. It is important to understand the difference between these insurance types and what benefits they offer as HD progresses. It is also important to note that many other benefits cannot be accessed unless you are getting medical care.
· Other Insurance – This is a broad category that includes other insurances: life, accident, hospital, critical care, long-term care, etc. Many of these insurances are difficult to obtain with a diagnosis of HD, or a family history of HD. It is very important to understand what benefits these types of insurance will provide to you and if they are worth it. Many of these benefits are offered by employers, which does help ease barriers to HD families and individuals.
· Legal Planning – Legal planning is a very important part of the disability umbrella that often gets overlooked but is necessary to make sure government and financial resources are protected and to help ensure the wishes of the HD individual are met. This planning category is necessary for Medicaid accessibility through specialized asset protection, like special needs trusts or Medicaid trusts, and legal decision making, which includes durable Power of Attorney, Medical Power of Attorney, and Advanced directives. The goal of legal planning is that no family would have to pursue guardianship/conservatorship because all of the necessary documents are already in place.
· Financial Planning – Financial planning is an ongoing process that looks at your financial picture to develop a strategy for achieving short term and long-term goals. Creating a financial plan is important because it helps you make the most of your assets and to understand what you need for your future.
· Long-term Care Planning – Long-term care planning is the culmination of all the Disability Umbrella categories and will help determine what care is appropriate, whether it is staying at home or going into a care facility. By the time a loved one needs long term care, they should already have disability benefits, Medicare/Medicaid, a financial plan to pay for the care, and a signed durable Power of Attorney to ensure their wishes are honored. Having these things in place will make it easier to choose the right care option.