If you or a loved one have a chronic illness, it’s imperative that you talk frankly about it with your financial advisers. You don’t necessarily need to hire advisers who have specific expertise in dealing with chronic illness, just advisers with sufficient empathy and a willingness to tailor some of their usual approaches to meet your specific needs. Here’s help for individuals, their families, and their advisers.
Misconceptions and bias about chronic illness abound
Consider some of the views and misconceptions about chronic illness. This is important to better understand what chronic disease means to those living with it, and how it affects planning.
When someone is sick, you might buy them a “get well” card – but unless a cure is found, no one “gets well” from chronic illness, they get worse. As a society, we don’t seem to deal well with chronic disease. That is part of the planning problem, bias and misunderstanding make it hard for those living with chronic disease, their loved ones, and advisers trying to help them, address the issues. Helen Keller was a prolific author, political activist, and lecturer. She was the first deaf-blind person to earn a Bachelor of Arts degree. Was she “disabled,” or should we focus on her abilities instead of her disabilities? Diversity is a goal of many businesses, and diversity should expressly include health challenges. But most chronic illnesses and disabilities are not visual and often health challenges fall off the diversity radar. They shouldn’t. The international symbol of disability is a mischaracterization of reality. That symbol is a white stick figure in a wheelchair against a blue background. It is a misrepresentation since only about 7% of those with disabilities are wheelchair bound.
Another misconception is that chronic disease is really an issue for the very elderly. The facts belie that misconception. 60% of those living with chronic illness are between the ages of 18 and 64. 2 to 5% of all people with multiple sclerosis have a history of symptom onset before age 18. Today in the US 8,000-10,000 children have multiple sclerosis and another 10,000-15,000 experience disorders that may be related to multiple sclerosis. 5-10% of people with Parkinson’s disease are under the age of 45 (Young Onset Parkinson’s disease, or “YOPD”). 70% of suicide may be in part motivated by physical illness or uncontrollable physical pain and more than 50% of these suicidal patients were under 35 years of age. These are real issues.
Meetings with your financial and other advisers
For those living with chronic illness to properly address their planning, they will need to meet with their professional advisers. If those meetings themselves present an impediment to planning, instead of help, the planning is unlikely to proceed well. It is incumbent upon clients living with chronic disease to explain their situation to the professionals before they meet. If accommodations are needed, you should ask up front for them. Don’t assume that any adviser understands your needs. Even those who are empathetic may just not foresee the minor accommodations that might make your meeting with them easier and more fruitful. If the adviser won’t endeavor to address your needs, perhaps it is worth looking elsewhere before that meeting. Advisers should know that it is OK to ask their client “what are your challenges so I can tailor my work to meet your individual needs?” Clients should give advisers express permission to ask any questions.
For some, planning shorter, separate meetings, rather than one long meeting might be easier. If you suffer from fatigue issues, which is common with many chronic diseases, let the adviser know in advance. If you have fatigue or cognitive issues request that the adviser provide an agenda and bullet list for the meeting. That might help you focus as the meeting progresses. If you need, as an adviser is explaining concepts, especially complex ones, inquire at frequent points along the way if you need to Request that the adviser pause after each concept and let you “process” for a few moments before proceeding to a new matter if that will be helpful. You might need to be certain that your advisers understand whether your intelligence is intact. It may be that you are as intelligent as ever but may process information more slowly.
If you have hand tremors, hand weakness or other symptoms, taking notes may be difficult. Some living with neurologic conditions may have difficulty multi-tasking so taking notes while listening might be difficult. Consider having someone such as a friend, family member, or other advisers, accompany you to the meeting to provide a second pair of ears. That person can review the meeting with you afterward, take notes for you if that helps, and perhaps even absorb some planning implications that may be difficult intellectually or emotionally for you to handle.
Do you face cognitive impairment?
You have to communicate with your advisers as to whether you have any cognitive impairments and what they mean. For someone not familiar with chronic illness, the visual effect of Parkinson’s Masked Facies may suggest to the uneducated adviser that you have a significant cognitive impact when you, in fact, may have none. Masked facies (also known as hypomimia) is the loss of facial expressions that might result in your having a someone expressionless demeanor. That may not at all correlate with any impact on cognition. With other diseases, you might have no apparent outward physical signs but might nonetheless have significant challenges. Describe and explain these to your adviser. There may be no impact on cognition, there may be some impact, or there may be a significant impact. Neurological diseases have a different impact on different people and even impact the same person differently at different times. Alzheimer’s disease will assuredly result in dementia, but it may not have a significant impact that affects your ability to plan today. Multiple sclerosis does not result in significant competency issue for most living with MS. Your symptoms impact differently at different times during the day or medication cycle. Cognitive fatigue may just flip on. Your challenges may affect different “spheres” but not others. For example, executive functioning (balancing a bank statement) may be impacted, but not your memory. Again, for professional advisers to properly advise you, they may need to understand the nuances of your particular situation.
Series of articles
This article is part of a loose series of articles based on this summer’s adventures. Articles will address a wide array of charitable and estate planning topics based on some of the following:
- Earlier this summer I lectured around the country educating estate planners about the impact of chronic illness on their clients and how they can help. All the honorarium from the presentations was donated to the American Brain Foundation. “We bring together researchers, donors, patients, caregivers, and the brightest minds to outsmart brain disease.” For more info click here. This series of articles will address planning for a number of neurologic conditions.
- A common health challenge is cancer. 1 in 2 men will be diagnosed with cancer, and 1 in 3 women. Our efforts include trying to encourage professional advisers (attorneys, CPAs, insurance consultants, trust officers, wealth advisers and more) to join the American Cancer Society’s National Professional Advisor Network (NPAN). Through NPAN the American Cancer Society provides advisers with reliable, easy-to-use tools and resources to help their clients make informed decisions regarding their estate plans. For more info click here. More on NPAN to come in future articles.
- We did a podcast on the estate and financial planning for breast cancer for the Breast Cancer Healthline. Breast Cancer Healthline is a free app for people that have faced a breast cancer diagnosis. The app is available on the AppStore and Google Play. Another article in this series will be based on those discussions.
- We sponsored a webinar on estate planning developments from the first four months of 2019 and used the program to help Boys Town. For 100 years, Boys Town has been a beacon of hope for America’s children and families through its life-changing youth care and health care programs. In 2018, almost 500,000 children and families across the United States were helped by Boys Town programs. For more info click here. We had the opportunity to tour Boys Town on last speaking summer’s tour and were touched as everyone that sees their incredible work has to be. To view a recording of the webinar, click here. We’ll do several articles on current 2019 developments taken from that webinar and presentations for various Estate Planning Councils we spoke to on this year’s tour in Sioux Falls SD, Rapid City SD, Tacoma WA, and Rochester MN. For more information on Estate Planning Councils click here.
- While on the road we presented a webinar on “Religion and Estate Planning.” We will follow up with a separate series of articles on how religious issues can affect estate planning. To view a recording of the webinar, click here. The second webinar in the religion and estate planning series was “Christian Estate Planning” To view a recording of the webinar click here.