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.
Virtual Clinic Visits and Anonymous Testing Options
Pre & Post test genetic counseling
Education & Connections to HD specialized care, support, and clinical trials
HD Testing
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.
Voice Message Banking
Record Your Loved One's Voice for When They Can No Longer Speak
Message banking can be used in various ways. One way is to record your loved one's voice for when they can't speak any longer. They can record messages for specific people and used as a legacy when the time comes they are longer with us. Another reason is so that they can communicate in the future with us as to their needs. Through various apps and technology they can tell their caregivers and family what is they are wanting, needing, or feeling. And of course, be able to still have some communication. This link share more information about it along with a program that can be used. If you wish to record on your own here is an exhaustive list to get you started.
Stay Connected HD Related Information and Research
Frequently Asked Home Health, Skilled Nursing Facility, and Hospice Care Questions Relating to Medicare
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Does Part A or B Provide These Benefits?
Medicare Part A provides benefits for SNF if certain requirements are met.
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What Are The Requirements for Part A to Cover SNF?
- Have been in a hospital inpatient ( as opposed to being inthe hospital for observation) for at least three consecutive days (not counting the day the patient is released) before being admitted to a Medicare - certified skilled nursing facility.
- Be admitted to a SNF within 30 days of discharge from the hospital.
- Require daily skilled care that can only be provided as an inpatient in this type of facility.
- Be certified by a doctor or appropriate medical professional as requiring skilled nursing services on a daily inpatient basis.
- Be treated for the same illness or condition for which they were a patient in the hospital (even if it was not the reason the person was admitted to the hospital).
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Does the Patient Have to Show Improvement In Order to Continue Care?
For many years facilities would apply the "Improvement Standard" however in Jimmo v Sebelius that changed. Medicare will cover skilled care provided in a skilled nursing facility, at home, or as outpatient therapy, regardless of whether a patient is likely to improve as long as they continue to meet qualifying criteria.
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What is the Benefit Period for Skilled Nursing Facility?
Medicare's coverage of a skilled nursing facilty stay is limited to a maximum of 100 days per benefit period.
The benefit period can sometimes be referred to as a spell of illness.
- Begins the first day that a beneficiary receives inpatient hospital or SNF care.
- Ends when a beneficiary has not been in a SNF or hospital for at least 60 days in a row (or, if a person remains in a SNF, when he or she hasn't received skilled care there for at least 60 days in a row).
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Is There a Limit to the Number of Benefit Periods?
ButtonThere is no limit to the number of benefit periods available to Medicare Beneficiaries. However, once a benefit period ends a beneficiary must have another three-day qualifying inpatient hospital state and meet the other requirements noted earlier before they can get another 100 days of SNF benefits.
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What Happens If I Don't Use All My Days and then Have to Go Back into a SNF?
If a person is released or no longer needs SNF but then later requires the SNF care again:
- Less than 30 days - The person doesn't need a new three-day inpatient stay to qualify for additional SNF coverage, but they need to continue to meet all the over coverage requirements.
- 60 Days or more - Medicare will not cover additional SNF care unless the person has a new three-day qualifying inpatient hospital stay and meets all other coverages if a break lasts for 60 consecutive days in a row.
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Are There Any Co-Pays or Deductibles That I Have to Pay for SNF?
ButtonMedicare Part A does have a deductible that must be paid for any hospital admission and those rates can change from year to year. You can visit cms.gov to check the current Medicare Part A deductible.
Medicare pays for the first 20 days of skilled nursing facility care, with no deductible or coinsurance. However, the patient is responsible for daily co-payments after the twentieth day. For 2023, the daily SNF co-payment was $200 for days 21 through 100. After 100 days in a benefit period, the beneficiary must pay all costs.
Medicare Supplement plans, Medicare Advantage Plans, or Supplemental Hospitalization plans can help reduce these costs if you have one of those plans for an additional monthly premium.
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Does Medicare Pay for Home Healthcare?
ButtonMedicare will pay for home health care if a person meets certain eligibility criteria and if the services are considered resaonable and necessary for the treatment of the person's illness or injury.
- Home Care - means services of a personal (nonskilled) care provider for assistance with activities of daily living (such as bathing, eating, dressing, continence, and transporting) or incidental activities of daily living (such as housekeeping, laundry, bill-paying, grocery shopping, etc).
- Home Health Care - addresses the needs of an individual for professional care including that of a registered nurse, physical therapist, speech therapist, occupational therapist, or doctor for medically necessary in-home visit.
Medicare covers home health care; it does not cover home care when personal care is the only type of care needed.
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How Do I Qualify for Home Healthcare?
ButtonTo receive Medicare-covered home healthcare benefits, a person must be eligible for and enrolled in Part A and/or Part B. The following requirements must also be met:
- A qualified medical professional must certify that skilled care isneeded and must prescribe the plan of care.
- The services provided must be by a participating Medicare-approved home healthcare organization.
- The patient must need at least one of the following; Intermittent skilled nursing care, physical therapy, speech language pathology, continued occupational therapy.
- The patient must be confined to the home (homebound).
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What Services are Provided under Home Healthcare?
ButtonHome Health Aide Services:
- Simple dressing changes
- help with medications that are self-administered
- assistance with activities that are directly supportive of skilled therapy, such as routine exercises and practicing functional communication skills
- routine care of prosthetic or othotic devices.
Medical Social Services - Ordered by a doctor to help a person with various social and emotional concerns related to an illness that may interfere with the person's treatment or recovery.
Physical, Speech-Language, and Occupational Therapy - If ordered by a doctor.
Excluded Services:
- 24-Hour per day care at home
- meals delivered to the home
- homemaker services like shopping, cleaning, and laundry
- personal care given by home health aides (like bathing,, using the toilet, or help in getting dressed) when this is the only care needed.
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How Long Can I Receive Home Healthcare?
ButtonThere is no limit to the length of time that a person can receive home healthcare benefits. Once a person meets the initial qualifying criteria.
Recertification is required at least every 60 days when the patient needs continuing home healthcare.
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If I Have a Medicare Advantage Plan Do I Have Supplemental Benefits?
ButtonBegining in 2019, CMS expanded the definitional scope of "supplemental benefits" that Medicare Advantage plans can offer. But all Medicare Advantage plans are not same as they may have different rules, costs, and restrictions on services but required to provide at least the same level of coverage as Original Medicare (Part A & B).
Additional Services that may be included with your Medicare Advantage plan:
Adult Day Care Services - services provided outside the home, such as assistance with activities of daily living and instrumental activities of daily living.
In-Home Support Services - services performed by a personal care attendance to assist disabled ormedically needy individuals with ADL's.
Home- Based Palliative Care - services not covered by Medicare in the home for palliative care ("comfort care") to diminish symptoms of a terminally ill enrollee with life expectancy of more than six months.
Transportation for (nonemergency) Medical Services - transportation to obtain Part A, Part B, Part D, and supplemental benefit items and services. It can not be used for non-medical services such as groceries and errand.
Home Safety Devices and Modification - safety devices to prevent injuries in the home an/or bathroom.