Estate and Financial Planning for Those Living with Multiple Sclerosis

Estate and Financial Planning for Those Living with Multiple Sclerosis

By: Martin M. Shenkman, CPA, MBA, JD

Disclaimer and Caveat

Nothing in these slides or any accompanying presentation is to be considered tax, legal, investment, or other professional advice. The information is merely provided for educational purposes and no action should be taken without the individual consulting his or her own tax, estate, legal, financial, investment, insurance, and other advisors. The National Multiple Sclerosis Society and any hosts, sponsors, moderator, panelists, or others associated with this program are NOT responsible for its content or accuracy.

Introduction: What is estate and financial planning?

The process of providing peace of mind for you, and your loved ones (however you define the term). It should address both the issues you may face while you’re alive, and those that might occur after your death, including the variables and uncertainties associated with having a chronic illness. It is more about planning for life rather than death. It is an integrated plan that coordinates your investments, insurance, emergency and disability planning, retirement, and other needs. Define what “estate planning” means to you.

What is estate and financial planning if you are living with Multiple Sclerosis?

Same process as for everyone just tailored to fit your special circumstances – your experience with MS. Even more so, it must be about planning for life rather than death. An integrated plan that coordinates your investments, insurance, emergency and disability planning, retirement, and other needs – but each component must be modified as required. Define what “estate planning” means to you in light of your, or your loved ones, living with the challenges of MS.

Examples: Planning if you are living with Multiple Sclerosis

Powers of Attorney – everyone names an agent to handle financial and legal matters, but your document might need to differ:

  • Standard forms might not suffice – e.g. what about compensation if the agent might handle all your finances for years?
  • Perhaps a special limited power (handle banking, don’t sell my house) effective immediately is a better way to protect you from an exacerbation or sudden hospitalization – most people don’t consider this but it might be best.
  • An immediate single agent “limited power” contrasted with a springing or co-agent “general power” (may permit the sale of your house, change of your beneficiary designations, and more) may retain greater control, but help address challenges.

Estate and Financial Planning For Life: In 12 Steps

Introduction to the 12 Steps

  • Every person is unique – it has to be your plan and address your challenges.
  • Reflect your personal wishes and circumstances.
  • Create a h2 foundation of documents, steps and a plan, to build upon. It’s a process, not signing a document.
  • Begin the process.
  • Break the process into manageable steps.
  • Stick with it.
  • Do as many steps at a time as you can handle properly and comfortably – staying committed to the process is more important than how many steps you tackle at once.
  • Make an Action Plan – We’ll show you how…Step by Step.

Before you Begin:

  • Gather information
  • Select advisors:
    • Attorney
    • CPA
    • Investment advisor or financial planner
    • Insurance consultant
  • Start thinking about the process.

Action Step: 12 Steps Begin by Informing Your Advisors

Your advisors need to understand: Chronic Illness is a common challenge. At least 400,000 Americans are living with Multiple Sclerosis, therefore, planning for MS and, for that matter, any chronic illness is something every attorney, CPA, etc. should understand in order to help their clients – it should not be a favor for you. 120 million Americans are living with chronic illness or disability. By 2020, about 157 million Americans will be affected by chronic illnesses. The lives of 26% of those ages 65-74 have been significantly impacted by chronic illness. 50% of those age 85 and older have had some cognitive impairment.

Example: What to explain if you are living with MS

My symptoms can be physical, emotional, and/or cognitive – because of the tremendous variability in MS symptoms, explain yours. For instance:

  • Visual symptoms are one component of my challenges.
  • Fatigue is a significant issue for me. It’s serious and is often one of the key reasons people with multiple sclerosis leave the work force. It is not analogous to how you feel when you had a late night. A cup of coffee won’t help. It feels like I’m drowning in quicksand and I can’t function.
  • Fatigue and other symptoms fluctuate during the day – please book appointments during my better times and be understanding if I need to cut a meeting short.
  • Explain exacerbations, what they mean, and the impact they may have.

Step #1: Organize: Organize Emergency, Financial, Information, and Advisor's Information

  • Passwords and security codes
  • Existing estate planning documents
  • Legal documents (contracts)
  • Income and expense info
  • Any budget or financial plan
  • Advisor contact info (name, firm, phone number, email, etc.)

This is the planning you should undertake to make it easier for you to deal with legal issues and finances as your MS progresses.

  • Medical information (neurologist and other physician contact info; current health status, etc.)
  • Emergency contact info (names, relationships, phone numbers, email addresses)
  • Specific financial information (account numbers, contact person, address, phone number)

Investment and Financial Information is Critical to Organize

Title (ownership) of accounts:

  • Revocable trust – tool to manage assets, address cognitive, and fatigue issues
  • Joint accounts – exercise caution
  • Account Management
  • Duplicate statements – no cost protective tool
  • Consolidation and simplification – retain control longer
  • Access to safe deposit box


  • Organizing records
  • On line payments – this can relieve you of a lot of paperwork
  • Set up on computer so can enlarge visually/auto-read – optic neuritis
  • Automatic deposits – reduce paperwork and chance for error

Financial Planning is Essential


  • Core of your financial plan
  • Foundation of insurance decisions
  • Prerequisite to gift and other planning
  • Investment allocation
  • Time horizon (disease course)
  • Risk level
  • Coordination of all accounts

Analogies to help you plan:

  • Rocket ship – if you’re off 1”, now you could miss by 100's of miles
  • –Sailboat – can’t sail into the wind – tack back and forth – adjust every year
  • 60 Second financial plan – can you live on 4% x your savings plus other cash flow sources

Action Steps: Emergency Info

Type up a list on your computer so you can update it, email it, and back it up. Disseminate the list to key people, ask for their help, and tell them what they might need to do to help and when. Each professional advisor should have the list in their file. Organize the list by category (e.g., banking, religious advisor, professional advisors, family, neighbors). List info needed for emergency action (e.g., account number, policy number, etc.).

Action Steps: Financial Plan

  • Prepare a budget.
  • Consider significant expenditures that might be required, e.g. making your home more accessible.
  • Review your investments.
  • Create a financial plan.
  • Implement changes suggested by the plan.
  • Update, review, and revise.

Step #2: Power of Attorney: Designate a Person to Handle Financial and Legal Issues

  • General vs. Limited
  • Agent (Successors)
  • Compensation
  • Begin date (Trigger)
  • Powers (Authority)
  • Durable (Disability)

Tailoring Your Power to Address Multiple Sclerosis

Your challenges, especially cognitive issues affect when effective and scope of powers granted your agent. Consider naming co-agents to build in safeguards and to share work. Plan for exacerbations (unless you have primary progressive MS which tends not to bring exacerbations), organize finances to facilitate management during a short term disability &ndash consider limited durable power of attorney coupled with a broad general power of attorney if you become permanently disabled at a future date. Consider special provisions – e.g., don’t sell my home, modify my home to make it accessible even if the cost won’t be recoverable when the home is sold, etc.

Action Steps: Power of Attorney

Choose a trusted agent and several successors. Hire a lawyer to draft powers tailored to your disease course and financial situation. Discuss modifications to standard forms:

  • Limited power for short term hospitalizations and broad power for permanent disability.
  • Compensation to agent
  • Definition of disability – how/when begins/ends (e.g., exacerbation)
  • Sign several originals, distribute them to the appropriate people and instruct them as to what to do in an emergency.
  • Organize and simplify assets so an agent can act easily.
  • Create a monitor relationship.

Step #3: Health Proxy: Designate a Person to Make Health Care Decisions

  • Agent (successors)
  • Powers (medical decisions)
  • Signature (State law)
  • Move (state; facility)
  • Religious concerns

Tailoring Your Health Proxy to Address Multiple Sclerosis

Does your agent have sufficient knowledge of Multiple Sclerosis and the decisions that might be required? Is your agent geographically close enough to respond to a sudden emergency? Do your medical wishes contradict religious beliefs of your agent or family that you need to address? Are there specific powers or rights which you do/don’t want your agent to have?

Action Steps: Health Care Proxy

Choose an agent and several successors who understand your health situation/wishes. Hire a lawyer to draft a health proxy that accomplishes your personal goals. Determine specific powers to give/not give agent. Sign several originals, distribute them, be sure a copy is included in your medical chart. Discuss your decisions with family, friends and most importantly, your agents.

Step #4: Living Will: Communicating Your Health Care Wishes

Statement of health care wishes to guide/direct your health care agent. Address broad array of decisions:

  • Lifestyle (nursing facility or home)
  • Health (experimental treatments)
  • End of life (heroic measures)
  • Other (funeral, burial, etc.)

Tailor Your Living Will to Address your Particular MS Challenges

What some call “heroic”, may be essential to you. Differentiate level of treatments at different stages of your disease course. Carefully modify quality of life decisions to reflect MS issues. Direct home modifications. With multiple sclerosis, you may wish to mandate donation of brain and CNS tissues to further MS research. If you experience pain you may wish to specify maximum pain relief even if it shortens life.

Action Steps: Living Will

Review and consider personal wishes that should be reflected, e.g. religious observances, care instructions. Hire a lawyer to draft a living will that communicates your personal decisions. Discuss modifications to forms: Religious restrictions; organ donations – e.g., CNS to foster MS research; experimental or non-traditional treatments; pain relief perhaps regardless of the impact on life expectancy. Sign several originals, distribute them, be sure one is included in your medical chart. Discuss your decisions with family and agents.

Step #5: Protect Your Minor Child With an Emergency Child Medical Form

Disclose child’s care information. Indicate medical data. Disclose insurance coverage.

Tailoring Planning for your Children to Address MS

Naming a guardian is all most people do but your child may need formal care arrangements if you are alive but disabled and a guardian appointment under a will won’t accomplish this. Power of attorney should address expenditures for children, not just you. Your financial resources may be limited. Disability and life insurance may not be available or limited to what you had pre-diagnosis – financial planning is vital.

Action Steps: Protecting Children

Review all aspects of protecting your children with your advisors. Name trustees under a revocable trust while you are alive and disabled and direct payments for care of children, and trustees and guardians under your will, to provide care. Financial planning – set up 529 plans, review resources. Prepare and sign child emergency medical form. Write a personal letter of instruction. Include directions in your power of attorney addressing children.

Step #6: Sign a Will

Name executors and guardians. Distribute assets. Tax planning (bypass and martial trusts). Trusts for heirs. Plan flexibly – laws and life change. Consider caps on amounts bequeathed to different trusts.

Request that Others Tailor Their Wills to Address MS

Does it make sense for loved ones to name you executor or guardian? If not, suggest they revise their documents. If you are named a beneficiary, suggest that your possible benefactor name a trust designed to protect you, rather than name you outright.

Action Steps: Sign a Will

Wills are important, but if you’re facing a progressive chronic illness it is only one step of many and perhaps not the most important step. Include personal letters of instruction. Consider trusts for minor children. Donate to charities that have helped you – even modest donations send an important “thank you”. Opt for flexibility in case you cannot update the document to reflect future changes. Suggest others establish trusts for you in their wills.

Step #7: Create a Revocable Living Trust

Establish a personalized (not boilerplate) living trust. Transfer assets to a trust during your lifetime. Avoid probate and intestacy. Contain dispositive provisions of your will. Manage assets during disability or illness – unlike a will addresses planning while you are alive and well, or disabled.

Tailor Your Revocable Living Trust to Address Multiple Sclerosis

Depending on your current status (e.g., cognitive impairment), you can serve as sole initial trustee, but serving as initial co-trustee may be preferable. Tailor clauses to retain control while protecting you. Trustee removal clauses should consider your challenges now and likely disease course – e.g. you can’t be removed unless disabled for 30 days to avoid your removal for a short term exacerbation. Include details on lifestyle you wish maintained. Address care for children and authorize trustee to distribute for them.

Action Steps: Revocable Living Trust

See comments for “Wills” above, and coordinate. Boilerplate Trusts, designed to avoid probate, won’t accomplish your goals – be wary of the trust mills. Focus of document should be protecting you (and your loved ones) and communicating your wishes as your disease progresses. Tailor trustee replacement, disability, and other provisions to the nuances of your anticipated disease course. Fund the trust (transfer assets into the trust name) other than retirement assets or professional practices.

Step #8: Insurance: Be Sure Your Insurance Coverage is in Order

  • Property and casualty insurance
  • Business coverage
  • Long term care coverage
  • Disability income
  • Life insurance
  • Liability Coverage

Tailor/Plan Your Insurance to Address MS

Does homeowner’s insurance cover home health aids? If you have disability coverage are you collecting; are your payments correct? If you have life insurance can you borrow against it, convert it to permanent coverage if it is term, can you benefit from a viatical settlement? Does your partner/spouse have long term care coverage? – Consider the impact of your MS on them.

Action Steps: Insurance Coverage

Don’t make assumptions – MS doesn’t mean you don’t have insurance planning options. Have all your insurance coverage reviewed at least every 2 years. Evaluate all options – Can you convert term life insurance to a permanent policy? Can you sell life insurance in the secondary market to free up cash. Standard homeowners coverage may not suffice – do you need a rider for home health workers/home improvements?

Step #9: File Beneficiary Designations and Confirm Title to Accounts

Standard provisions are not always adequate. Coordinate with Revocable Trust. What powers should agent have? Give copies to your advisors. Update when banks merge. Revise when tax laws change.

Request Loved Ones Tailor/Plan Their Beneficiary Designations to Address Your Illness

Should a trust for your benefit be named instead of you as beneficiary? Should someone else be named beneficiary instead?

Action Steps: Beneficiary Designations

Consider all beneficiary designations: life insurance, pensions, IRAs, brokerage accounts, and more Be cautious about signing beneficiary designations for non-retirement accounts. Obtain copies of the forms you filed and blank forms to facilitate revision. Have family members, who name you as beneficiary instead, consider a trust for you.

Step #10: Give Back

Demonstrate important values to heirs. Thank those that have helped. Inspire others to give. Give however you can.

Action Steps: To Give Back

Make a donation (time, cash, insurance, even stuff). Include a bequest in your will – even small bequests can make a big statement. Write a heartfelt letter of instruction to heirs and thanks to those that have helped. Inspire others to give that have the wherewithal to do so.

Step #11: Communicate

Educate and inform your fiduciaries. Preparation of beneficiaries.

Action Steps: Communicate

Explain your finances, family, care, disease, and so forth to your advisors – tell all, so they can help properly. Discuss with family, friend,s or others involved in your life, what help you might need. Can those you expect to rely on really help – do you have alternatives. Express your wishes in face to face meetings and then confirm key points in writing. Consider a consultation/evaluation by a licensed independent care manager.

Step #12: Review – It’s a Process

Nothing remains static:

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