Welcome to the Huntington's Disease Resource Page!
We've dedicated this page to helping those individuals and caregivers affected by Huntington's Disease or HD and other degenerative neurological diseases. Please contact us and let us know if there is a resource or something missing that we can help with.
Why this Resource?
Turning Tragedy into Purpose
What is Huntington’s Disease
Huntington’s disease is a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition). It is caused by a genetic mutation that leads to the death of nerve cells in the brain. Symptoms typically begin in middle age, but they can start at any age. The severity of the disease and the age of onset can vary widely even among individuals with the same genetic mutation. There is currently no cure for Huntington’s disease, and treatment is mainly supportive and aimed at managing symptoms.
Our Story
In 2019 my wife was diagnosed with this disease when she was having trouble being able to work and take on new tasks. Her mother before her had been diagnosed as well and later succumbed to the complications caused by this disease in 2012. My wife had always known that this may be a possibility as it is a genetic disease and so we did all that we could to prepare including not having children of our own as to not “pass-down” this disease. Children can have a 50/50 chance of inheriting the mutation. Following diagnosis we sought out help and resources from the HDSA (Huntington’s Disease Society of America) and Help4HD and now try to serve as a resource for both and individuals in our similar situation. In 2022 we attended our first ever Huntington Disease Conference in Nashville, TN (pictured left) and it was a great experience for our family.
So You or Someone You Know May Have HD, Now What?
We get asked all the time as an Insurance Professional what our recommendations are especially as it pertains to insurance. So here some information that might be of some help.
DISCLAIMER: Now keep in mind that insurance is regulated by each state and may differ from one state to another but this information is in general terms and we are not licensed in all states (We have licenses in TN, VA, NC, SC, FL, GA). If you live in one of the states we are licensed we may be able to assist you in finding the appropriate plan to help you and your family but our goal to serve as a resource mainly and would be honored to serve you as a client as well.
Our Consultation Service is a paid fee service as we may not offer services in every state and provides up to 1 hour of our professional information gathering and solution service. For our fellow HD families we offer this service at a 50% discount of our normal consulting fee.
Life Insurance
Ensuring a Secure Future for Your Family
Getting Life Insurance is important no matter the circumstances. Being able to leave your loved ones with the means to take care of final expenses is a great gift to alleviate the financial burden when we are no longer here. There are many types of life insurance options, Term, Whole, Universal, etc. For HD individuals it is important to apply and secure life insurance EARLY, before diagnosis if possible, as age and medical history can play important factors in getting the rate. For individuals that have already been diagnosed with HD there still may be options such as Final Expense Life Insurance (which is guaranteed issue but may have a graded death benefit and higher premiums) or Pre-Paid Funeral Planning (which we can assist with in certain states). In most cases a person can apply for life insurance for another person as long as they have an “insurable interest” such as a parent, spouse, or child. If you would like to get a quote or learn more click the button below.
Disability
Ensuring a Continuation of Income
There are two main types of disability insurance: short-term and long-term. Short-term disability insurance provides financial assistance for a limited time, usually a few months, after a person becomes disabled. Long-term disability insurance, on the other hand, provides financial assistance for an extended period of time, often until the person reaches retirement age. Disability insurance is important because it helps individuals and their families financially if the person becomes disabled and is unable to work. It can help cover living expenses, medical bills, and other costs that may arise due to the disability. Without disability insurance, individuals and their families may struggle financially if the person becomes disabled and is unable to work. Sometimes you may be able to purchase disability insurance through your employer which may be less expensive and cover pre-existing conditions. However purchasing an individual disability policy may provide greater financial benefit but you will have to answer underwriting questions similar to applying for a life insurance policy. It always a good idea to have this in place prior to needing to use it. Social Security Disability can be applied for once you become disabled but may take upto a year to get approved and you may need an attorney. Luckily the HDSA can be a great resource for applying for SSDI!
Long-Term Care
Planning for Future Healthcare Needs
Long-term care insurance is a type of insurance that covers the cost of long-term care services, such as nursing home care, assisted living, and in-home care. These services are typically needed by individuals who are unable to perform activities of daily living, such as bathing, dressing, and eating, due to a chronic illness, disability, or cognitive impairment. Long-term care insurance can help cover the high cost of these services, which are often not covered by traditional health insurance or Medicare. It is important to have long-term care insurance because the cost of long-term care services can be financially devastating for individuals and their families. Without long-term care insurance, individuals and their families may be forced to pay for these services out of pocket or deplete their savings and assets in order to pay for them. Although the cost of a LTC policy may seem expensive it is cheaper than paying out-of-pocket for these facilities that average $1,000/wk or more. Again, it is important to have this in place prior to becoming disabled and premiums are based similarly on the underwriting of life insurance and can sometimes be added as a rider to a life insurance policy. If you need assistance trying to find a facility we also can connect you with a Trusted Partner (Oasis Senior Advisors) to act as a concierge at no cost.
Wills & Estate Planning
Ensuring Your Wishes are Followed
Having a Will and Estate plan is important for a loved one with a disability because it allows them to specify how they would like their assets and personal matters to be handled after they pass away. It also ensures that their wishes are carried out and that their disability is taken into consideration when making decisions about their care. Without a Will and Estate plan, these matters may be left to chance, which can lead to disputes among loved ones and potentially result in decisions being made that do not align with the wishes of the individual with a disability. Sometimes you may need to go a step further from a Will to creating a Trust. We we can assist you by connecting your to vetted professional attorneys at an affordable price. We often spend more time planning for our vacations than planning for what happens when we leave our loved ones. Click the button below to learn more or contact us directly!
Power of Attorney
Appointing a Trusted Person to Make Decisions on Your Behalf
Having a Durable Power of Attorney (POA) is important for your loved ones because it allows them to appoint someone they trust to make financial and legal decisions on their behalf in the event that they become incapacitated. This can include paying bills, managing investments, and making healthcare decisions. Without a durable POA in place, a loved one may be unable to access their accounts or make important decisions about their care if they become unable to do so themselves. This can lead to unnecessary complications and stress for both the individual and their loved ones. By having a durable POA in place, you can ensure that your loved ones have someone they trust to handle these matters on their behalf. If you are married you still need a POA as sometimes that is often not enough to be legally acceptable. We we can assist you by connecting your to vetted professional attorneys at an affordable price. Click the button below to learn more or contact us directly!
Your Support Team
Creating a Network of Help and Encouragement
As a caregiver, it is important to surround yourself with a support team to help you manage the physical, emotional, and practical demands of caregiving. It can be overwhelming to handle all of these responsibilities on your own, and having a support team in place can help to alleviate some of the burden. Consider enlisting the help of family members, friends, healthcare professionals, and community resources to create a well-rounded support system. You may also want to consider hiring a professional caregiver to provide respite care, which can give you a much-needed break from your caregiving duties. It is also important to remember to take care of your own physical and mental health by finding ways to relax and recharge, whether that be through hobbies, exercise, or simply taking time for yourself. Don’t forget to reach out to your case manager or a social worker to help you consider resources and even support groups. For Additional Resources visit the links below.
Health Insurance
Ensuring Access to Quality Healthcare
When a loved is affected by HD they may be unable to continue working which can jeopardize their ability to continue to have health insurance which is crucial in their continued care and well-being. The good news is that often times you can get individual health insurance coverage through the marketplace and may even qualify for a subsidy regardless of any pre-existing conditions (which is what we worried about before the Affordable Care Act). Alternatively you may also be able to consider health sharing plans such as Medi-Share if you are of the Christian faith. Once you turn 65 you will be eligible for Medicare (you can also qualify for Medicare if you are under the age of 65 and been on Social Security Disability for 24 months). If you are needing to find health insurance and live in a state we are licensed in we can certainly help!
Assisted Living and Nursing Homes
Oasis Senior Advisors
It can be overwhelming when it comes to trying to find the right place for your loved one and often times we may not be sure of what the right questions are that we need to ask and unprepared for the time commitment to visit and tour facilities. Our agency has partnered with Oasis Senior Advisors (Think of them like a real estate agent for assisted living and nursing homes). In any given area, there are hundreds of options to choose from and finding the “right” place can be challenging. At Oasis Senior Advisors®, we are committed to simplifying the process of selecting a senior housing community for you and your family. We proudly offer free senior housing services for individuals across the country. We are a local, community-based service, offering a personal, compassionate touch tailored around you and your unique needs. We take the burden of finding a senior housing option off your shoulders by handling all of the research and matching services for you. Our proprietary OasisIQ™ software takes into account your lifestyle, finances, and other factors to find the perfect option.
Centers of Excellence
Finding Quality Care for HD Patients
Centers of excellence in Huntington’s disease are specialized medical centers that have a deep understanding of the disease and offer comprehensive care to patients. They are typically staffed by a team of medical professionals with expertise in treating Huntington’s disease, including neurologists, genetic counselors, and therapists. These centers are often at the forefront of research and may offer access to the latest treatments and clinical trials. Seeking care through a center of excellence in Huntington’s disease can ensure that patients receive the highest quality of care and access to the most current treatment options. Additionally, the specialized nature of these centers means that patients can receive care from a team of experts who are familiar with the unique needs and challenges of living with Huntington’s disease. Click the button below to find a Centers of Excellence near you.
HD Testing
Virtual Clinic Visits and Anonymous Testing Options
Pre & Post test genetic counseling
Education & Connections to HD specialized care, support, and clinical trials
HD Genetics understands that the decision to pursue genetic testing for Huntington’s disease (HD) can be difficult. We offer you the ability to undergo genetic counseling and testing with a licensed HD genetics expert from the comfort & convenience of your own home! HD Genetics also offers options to test under a concealed identity for individuals who wish to test anonymously.
