Cover Story: Planning for Your Future

Ensuring that you and your loved ones are protected through careful legal and financial planning

By Susan Wells Courtney
Reviewed and edited by Martin M. Shenkman, CPA, MBA, PFS, AEP, JD


Photo of three people talkingThis article provides an overview of some of the most important topics to consider when planning for one’s future. Legally, everyone should have specific documents in place that will appoint selected individuals to make medical decisions and handle personal as well as financial matters, should the need arise. These individuals assigned to handle another’s business also need legal permission to access financial and medical records, along with discussing these matters with the different legal, financial, and healthcare professionals. Healthcare preferences must also be communicated in advance, put in writing, and perhaps given to physicians to add to your medical records.

Financial planning is critical to making sure that property and investments are properly invested, insured, and managed for an individual’s future as well as his or her family’s future. In terms of health care, people need to be assured that they will have access to medical care as they age, as well as funding for various levels of assisted care and skilled nursing care residences, if and when the time arises.

Many of us don’t realize the importance of planning in advance, at least not to this degree. And no one enjoys dealing with planning for unpleasant events like health challenges or death, but not dealing with them will almost assure you and your loved ones a more difficult time. However, when a medical emergency arises or some other life-changing event occurs, having all of the right planning, documentation, information, and instructions in place can mean the difference between everything running smoothly according to one’s wishes… and avoiding loss of control of legal, financial, and medical decisions and desires. Ultimately, planning ahead can more likely ensure a secure and stable future, whereas insufficient planning puts decisions and even financial assets in the hands of strangers – and could leave an individual, as well as his or her family, without control and in financial trouble.

Planning Ahead for Individuals with a Chronic Illness

For individuals with a chronic illness, or those with a family member with a chronic illness, advance planning becomes even more vital and more specified. Extra attention needs to be given to the typical symptoms and progression of one’s disease. As most of our readers know, multiple sclerosis (MS) is unpredictable. With relapsing forms of MS, it can flare up and leave someone unable to function for weeks or months at a time. Often, but not always, the relapse may remit and allow the individual to return to his or her full activities. For individuals with progressive forms of MS, one’s disease may advance at a slow pace, without flare ups, while others may experience a more aggressive form of the disease. Additionally, the symptoms of MS vary greatly, from numbness, visual changes, reduced mobility, and pain, to depression, cognitive problems, and overwhelming fatigue.

As noted throughout this article, these specific symptoms and anticipated disease progression will need to be taken into consideration when creating important legal documents that serve to: specify medical directives; appoint people to handle one’s legal, financial, and medical decisions; allocate how one’s estate is to be distributed, having family or other benefactors who may bequeath you money include a special needs or so-called supplemental needs trust for oneself; and even provide emergency medical information as well as temporary guardianship of a minor in the absence or temporary disability of a parent.

Although not everyone can afford to hire professionals when creating these documents and making vital decisions for one’s future, it is strongly advised if it is at all feasible. Not only are such professionals recommended, ideally, these professionals should be experienced in assisting individuals with disabilities and must be aware of the many factors involved with long-term planning for one’s specific illness. Additionally, when consulting with a professional, individuals need to be realistic about their prognosis and be able to communicate their special needs – including those they currently have and those that they anticipate in the future.

Photo of two people going over paperworkYou should also never suspend common sense and the knowledge that you have. Not every professional will understand the enigmatic (or difficult to understand) nature of your disease course or how your planning may need to be tailored. So whatever option you take – whether hiring an attorney and other adviser or endeavoring to do the planning and documents on your own – you would be well-advised to educate yourself and stay proactive. If something doesn’t make sense to you, ask questions and get a resolution.

In his book, Estate Planning: For People with a Chronic Condition or Disability, Attorney Martin M. Shenkman explains, “If you or a loved one has a chronic illness, estate planning takes on greater importance and requires modifications from what is typically done for those who don’t have a chronic illness. Too often estate planning is viewed as merely signing ‘standard,’ or what lawyers affectionately call ‘boilerplate,’ forms. While this is dangerous for even the average person, it can be catastrophic for those with chronic illness and their loved ones. ‘Standard’ forms just won’t work for you.”

The KEY point is that you must redefine “estate planning.” Most people equate estate planning with planning for death and signing a will. That might be an important part of the process, but if you are perhaps at the age of 50, you might have another 40 years of life expectancy, even with MS, and estate planning should be more about protecting you and your loved ones for that next 40 years. Be sure to focus on a broad and holistic perspective of what estate planning is really about.

Anyone with a chronic illness should not feel that he or she is alone in this situation. According to a 2014 report issued by the National Health Council in Washington, DC, “Chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country. By 2020, that number is projected to grow to an estimated 157 million, with 81 million having multiple conditions… More and more people are living with not just one chronic illness, such as diabetes, heart disease, or depression, but with two or more conditions. Almost a third of the population is now living with multiple chronic conditions.”

Shenkman continues with this key note, “You need to be proactive. Don’t assume that your advisers (attorney, accountant, financial planner, etc.) understand the nuances of your illness or how planning and documents need to be modified for you. You have to inform them. If you’re uncomfortable discussing your illness and its potential consequences, bear in mind that if you don’t make sure the people advising you really understand, you won’t have the protections you or your loved ones need. However difficult, you’ll benefit by being forthright, clear, and very specific.”

Seven Steps of Estate Planning

In Estate Planning: For People with a Chronic Condition or Disability, Shenkman divides estate planning into seven vital steps. To follow is a listing of these seven steps, along with a description of each. Additional information is given to explain how these steps may be modified if someone is living with a chronic illness.

Step 1: Organize emergency information

Photo of filesIf something happened to you, or if you were to experience a major flare-up, would your loved ones know where to find important information, such as legal, tax, and financial records? Would they know where your bank accounts are located and what insurance policies you have? How about your specific doctors, their contact information, and medications you are taking? You may also care for young children, and instructions for who is to take over in your absence needs to be clearly noted, plus you may have pets that require attention. These are all critical items that your loved ones will need to access quickly if you were to have a medical emergency and were not available to provide this type of information yourself. Shenkman advises to take the time to make sure such information is “organized, available, and simple.” If it is a password-protected computer, will someone know the password and where to find it?

Organizing emergency information is particularly important for individuals with a chronic illness such as MS where cognitive issues can be a symptom. Cognitive symptoms can affect information-processing skills, reducing one’s ability to focus, maintain, and shift attention from one thing to another. These symptoms can also make performing simple and complex math skills more difficult, as well as impact executive function, which are involved with overseeing and coordinating tasks such as organization, planning, sequencing, problem solving, and judgment. This adds to the challenge of staying on top of financial, legal, and medical decisions and obligations, particularly during flare-ups.

By having emergency information well-organized in advance, Shenkman points out that this can become a “tool” to assist with keeping up with these types of obligations. Not only can it help people with MS to stay current with bills, taxes, insurance, bank accounts, etc., but it also can help these individuals to maintain control of their business dealings for a longer period of time. He also explains that while estate and financial-planning books provide forms to organize information, this isn’t enough for someone coping with a chronic illness. Techniques are needed to organize financial and other information so that the individual with MS may continue to use and update his or her records, keeping everything current in case of an emergency.

Step 2: Designate a person to handle financial and legal issues

Through a legal document known as a “power of attorney,” you are able to appoint an individual to help with your legal and financial matters during a time when you are not able to do everything for yourself. This might include activities such as making deposits, paying bills, and handling other business tasks. For individuals with MS, a power of attorney may need to step in and handle business dealings during an MS exacerbation. Once the relapse has remitted, the individual may be able to resume the control of his or her affairs.

With a chronic illness such as MS, which typically has a long disease course, help may be needed for several years. Members of the MS community may choose to name three or more people as alternates to serve as their power of attorney to ensure they have protection in the distant future. Readers should note that the rules for power of attorney vary by state, and some states limit those you may name as power of attorney to certain close relatives. Individuals should consult an attorney in their state when creating a power of attorney.

Additionally, individuals with MS need to be certain that their power of attorney is “durable.” Without being designated as durable, power of attorney becomes invalid when someone becomes disabled. Minimally, a statement such as, “This power of attorney will remain in force and effect even if I’m disabled,” needs to be included in the document. But be careful as the required language will vary by state. Be sure to use the right terminology required by your state’s laws.

While a power of attorney allows a trusted person (aka “agent“) to be selected to handle or assist with your financial and legal matters when help is needed, and a durable power of attorney continues regardless of disability, other options for power of attorney exist. These include: “general power of attorney,” giving the person you select permission to handle all financial, legal, and other matters; “special power of attorney,” limiting the person you select to certain transactions; a “business power of attorney,” to handle affairs if you own or operate a business; and “springing power of attorney” (not recognized by all states), which only allows the person you have selected to handle your affairs when you are disabled and not before, often adding the obligation of having to prove that you are officially disabled – and possibly delaying when the person you have selected may take over your affairs.

For the reason just mentioned, the option of springing power of attorney is often not appropriate for someone with MS, who would need immediate assistance with their personal affairs when experiencing a sudden relapse. By the time disability can be proven for the agent to take over, a person with MS could have already recovered from the relapse. On the other hand, if an individual with MS gives an agent general power of attorney so that business dealings such as physically going to the bank may be handled by the agent prior to any significant disability, the person with MS may be giving up more control than he or she wishes at this point in time. Also, please keep in mind that some states will not recognize or accept a springing power.

Shenkman suggests that a “hybrid approach” may be best for some chronic illnesses, combining different types of power of attorney and including details that are specific to your situation. This is particularly helpful if a power of attorney is needed only for limited duties, such as going to the bank when fatigue and mobility are an issue… or when disease flare-ups are possible, at which time a power of attorney would be needed to step in temporarily, but then give control back to the individual once his or her flare-up has subsided. This hybrid approach is a creative and flexible method of tailoring your power of attorney form to best fit your specific situation.

Step 3: Designate a person to make healthcare decisions and access medical records

Through a legal document known as a “healthcare proxy,” you are able to appoint an individual – often a relative or a friend – to make medical decisions for you if you are not able to do so yourself. This would typically be at a time of a medical emergency or if someone is ill or disabled and not able to communicate or make decisions on his or her own.

The person who is appointed by a healthcare proxy (known as the “agent“) would help make decisions to ensure that your healthcare wishes are followed. Without a healthcare proxy agent, no one else has the right to make such decisions for another individual. This agent can also help to monitor how you are being cared for, even if you are able to make the bigger decisions on your own. Please note that you will need to complete a special authorization for your healthcare proxy agent to have access to your medical records, and this authorization must follow the requirements listed in the Health Insurance Portability and Accountability Act (HIPAA).

Photo of two women talkingWhoever is chosen to be your agent in your healthcare proxy should understand MS and how you are affected by this chronic condition. You should openly discuss the form of MS that you have – explaining whether you have a relapsing form that will flare up and then subside, or if you have a progressive form that slowly worsens without remissions. Possible symptoms should also be discussed, so your proxy is familiar with what you may be experiencing and how your symptoms are often treated.

If you do not have someone to name as a healthcare proxy agent, about 20 states permit a different approach called a Physician Order for Life Sustaining Treatment, or “POLST.” Some states use different terminology. Where permitted, you can complete a form that your physician can put into your medical records and then your physicians will be authorized to make decisions if necessary.

Step 4: Communicate your healthcare wishes

A legal document known as a “living will” provides your healthcare wishes in the event of an emergency or other healthcare situation when your proxy may not be available or may be too upset emotionally to assist. This document will often address such topics as which life-saving procedures someone wishes to have performed depending upon his or her prognosis. Whenever going through a medical procedure, the hospital and attending doctors may keep your living will on file should it ever be needed in an emergency.

While the healthcare proxy that appoints an agent to make healthcare decisions for you is integrally connected with one’s living will, since the agent may ultimately need to make the choices that are specified in the living will, the two documents are prepared and processed independently of one another. And while some hospitals and medical facilities require a living will for their files, some states do not recognize a living will. In these states, only the healthcare proxy carries any legal importance.

Regardless of whether or not a state recognizes a living will, it still provides critical insight into your healthcare wishes, which can be invaluable to your healthcare proxy agent, family members, and others involved in your healthcare. It needs to present “clear and convincing” proof of what you do and do not want performed. Particularly in light of having a chronic illness, you’ll want to add your individual wishes to the standard language, specifying in greater detail your preferences and values. Simply signing a standard form just prior to a medical procedure or using a generic form from the internet is risky and may not result in the preferences you have specified.

Some of the decisions noted in a living will include: whether to take no heroic measures or to take all measures to preserve your life; if artificial nutrition and hydration may be discontinued at any time; quality-of-life statements; religious convictions; guardian designation; pain-relief measures; organ donations; and burial instructions. While these topics are not pleasant to think about, having such directives in place will help ensure that the correct actions are taken if and when the time arises. It also helps to take some of the pressure off of loved ones who may be too emotionally involved to make difficult decisions regarding your final wishes.

Step 5: Protect your minor child with an emergency child medical form

If your child is temporarily in someone else’s care – possibly because you are away on vacation or in the hospital with a medical situation, for example – an emergency child medical form is vital should he or she become ill or have any type of a medical emergency. A completed and signed form providing important information is enormously helpful to your child’s caretakers and medical professionals. This form includes health-related details such as any health conditions, medications, allergies (including allergies to medications and materials), health-insurance information, and special instructions for his or her care.

Photo of a mother and daughter walkingA guardian appointment stated in a will does not come into effect until the parents have died. If one or both parents are not available and the child is temporarily in someone else’s care at a time when a medical emergency arises, hopefully someone else close to the child can help to make medical decisions. However, while an emergency child medical form may not be considered as a legal document, it can provide critical information to the doctor and medical facility. This document should include the following information:

  • The name of the person who is caring for your child or children while you are absent
  • Contact information for you, your close relatives, your child’s pediatrician, and any other relevant individuals
  • Your child’s medical insurance information
  • Your child’s current conditions and medications
  • Your child’s blood type, allergies, and any other unique medical situation
  • Your child’s medical history
  • Religious restrictions

After signing this form, the original should go to the person caring for your child, and copies should go to his or her pediatrician and another to be filed at your home. If traveling and if you don’t have all of the specifics memorized, you may want to take a copy with you as well.

Step 6: Sign a will

A will is a legal document that provides instructions on how one’s assets are to be distributed after he or she is no longer living. If children under the age of 18 are involved, the will should also include the name(s) of those who will become the guardians of the minor children.

In his book, Estate Planning: For People with a Chronic Condition or Disability, Shenkman notes, “While your will is an essential part of your estate plan, and possibly the key document governing the distribution of your assets on death and the appointment of a guardian if you have minor children, it is not much different from wills executed by people who do not have to contend with a chronic illness.” For this reason, he refers readers to publications written for the general public, which address wills in greater detail.

Shenkman explains that a will, or Last Will and Testament, may not be as important as a funded revocable living trust in regard to one’s assets. (Details on this type of trust are given in the next section.) However, when properly prepared and executed, your will can protect your loved ones and ensure that your wishes are carried out. He notes that individuals with a chronic illness may want to consider donating to one or more charitable organizations that serve others with the same condition. Assets not affected by a will include IRAs and retirement plans, life insurance policies, jointly owned assets, as well as certain bank and other accounts, depending on how they are transferred after one’s death.

Step 7: Create a revocable living trust

A revocable living trust provides instructions on where some or all of one’s assets will be transferred during his or her lifetime. By having this document in place, assets won’t be handled by the courts in a process called “probate,” where assets are distributed by the courts according to your will. Also called a “living trust,” “loving trust,” or “revocable inter vivos trust,” a revocable living trust “might be the most powerful and beneficial tool to assist you in managing assets and other matters throughout the often unpredictable course of your disease,” according to Shenkman.

Photo of a woman on a computerThe benefits of a revocable living trust include being flexible, comprehensive, and detailed, enabling the owner of the trust to make specific plans with regard to one’s disability. Another benefit, as mentioned, is avoiding probate in most instances after one’s death. You may list yourself as the primary beneficiary of the trust, but you can also have loved ones as beneficiaries too. Living trusts are revocable, so they may be changed at any time, provided the trustor – the one who oversees the trust – is competent. Should the trustor at any time be deemed to not have a high enough level of competency, the living trust is no longer revocable and cannot be changed.

With MS, if you are the trustor of your living trust, you may be well-advised to have a cotrustee (a second trustee) to make decisions and handle any transactions in your place should you experience temporary cognitive or other issues during an MS exacerbation that would put your competence in question. Having a cotrustee can allow for quicker, easier, and more effective transactions, while also keeping the living trust revocable. Unlike a power of attorney, with a revocable living trust, you may have a bank or trust company as your cotrustee if you choose. This can add integrity to the management of your trust.

However, a revocable living trust is not appropriate for everyone, particularly if money is an issue. You need to be able to afford an experienced attorney to prepare the trust, plus you also need to have significant assets to make this type of trust worthwhile. Assets such as retirement accounts and life insurance policies cannot be transferred to a trust.

Another approach that is a bit more complicated, but one that can add further safeguards, is to have a position called “trust protector.” This is a person given limited but important powers, such as to remove and replace the trustee or to demand that the trustee account for what they have done financially.

Special Needs Trust

The brochure, Estate Planning for Parents of Children with Disabilities (by Special Needs Alliance), defines special needs trusts as “discretionary, spendthrift trusts created for the elderly or individuals with disabilities. They are intended to supplement, but not replace, any public benefits that the trust beneficiary receives, such as SSI, Medicaid, subsidized housing and other programs.

“The requirements and terms of the trust can vary substantially depending on the public benefits program and state… The special needs trust can be used to supplement government benefits by paying for items, services and equipment that Medicaid will not cover, such as the purchase of a home, special wheelchairs, handicap-accessible vans or mechanical beds. It will also pay for limited travel, a personal attendant, and other recreational and cultural experiences. The trust can be specifically tailored to enrich the beneficiary’s life.”

The article, “Two Different Types of Special Needs Trusts” (The Voice newsletter, Sept 2017, vol. 11, issue 6), describes the two types of special needs trusts (SNTs). One type is a first-party SNT, which is established and funded by the beneficiary – such as when an individual with a disability receives an inheritance or settlement and needs to save these funds for the future while keeping his or her public benefits in place. Individuals are limited to $2,000 in assets for their government-funded benefits to stay in effect.

The other type is a third-party SNT, where someone close to the beneficiary – such as a parent or grandparent – initiates and funds the trust. Other people may fund this trust as well. Many factors and limitations are involved with both types of SNTs, but the primary difference is that after the beneficiary dies, funds still remaining in a first-party SNT must first repay the lifetime medical benefits paid by the Medicaid programs, whereas funds still remaining in a third-party SNT are not required to repay these government programs.

According to the article, “Special Needs Trusts, How Much Trouble Are They to Manage?” (Fleming RB, Krooks C, and Krooks BA, EP Magazine, Mar 2015), when providing an inheritance for a child or anyone with a disability to help plan for his or her future, a special needs trust is almost always the answer. If no trust is set up, the authors point out, “The cost, loss of family control and interference by the legal system will consume a significant part of the inheritance you leave and frustrate those who are caring for [your loved one].”

The article explains that trusts are not that complicated to manage and professionals may be hired as needed to assist with details such as tax returns and accounting requirements, using funds from the trust and not as an added expense for the trustee. With regard to naming a trustee, selecting a sibling may not be the best choice. The authors state, “We frequently counsel clients to name someone else – a bank trust department, a trusted professional, or a different family member – as a trustee.” This allows a sibling, such as a sister, to do what she does best… to be a sister. If appropriate, a sibling may be named as “trust protector,” as described in the previous section.

Additional Considerations

When to begin financial planning

In an interview with MSAA, Shenkman explained, “Once you’re 18, you should have some minimum documents, such as a proxy and power of attorney, even if you’re just a new adult. Because if you have an exacerbation and can’t make medical, healthcare, or financial decisions, you need somebody to be able to act for you when you need a hand. After you’ve reached the age of 18, under many state laws, your parents or whoever the responsible adult is, may not have the legal authority to act. You need to sign a document. I think that the age at which to start is far earlier than most people think about from a financial perspective and a legal perspective. Like with so many things in life, getting a jump on it and getting it done before you need it is what you really want to do.”

MSAA also interviewed Thomas D. Foy Jr., who is the founder of IRIS Financial Services and has been providing financial planning guidance to individuals and families for more than 35 years. “For adults diagnosed with MS, there is no such thing as planning too early. As a financial advisor, I am adamant to encourage my clients to seek legal direction as quickly as possible. Quality legal documents are a must to ensure appropriate ongoing care as well as to maximize any benefits while avoiding the potential for disqualification.”

Generic documents, state laws, and financial planning with a professional versus on your own

Photo of two men talkingFoy continues, “Any qualified legal professional would agree that you get what you pay for. Although the documents that are available online may be a quick fix, you run the risk of missing important facts that may be available when interacting with a qualified legal professional. If you are financially able to hire an attorney, be sure to ask if he or she specializes in working with families with special needs. This is a subspecialty and it is critical that your legal professional has experience in this area.

“Additionally, since each state determines the resources available and under what conditions, it is important to consider the differences based on your state of residency. Your legal professional and/or financial advisor should be equipped to discuss how things are handled in your state.”

Shenkman cautions, “I don’t want to suggest that you play lawyer, doctor, or other professional on your own, but the realities are that some people may not be able to afford more, but do your homework and make sure that the documents work for your state. If you move from one state to another, please see an attorney in the new state or update your documents if you’re doing them on your own for the laws in the new state. Don’t assume that the rules from the prior state will continue to apply. Some of the details are really significant and complicated. For example, if you’re married and there’s an issue with your marriage, and you decide to move out of state, the spousal rights under one state can be very different than another. You must see a lawyer before you go.

“Do not, and I repeat, do not, go on the internet, get a document, fill it out, sign it, and think that it’s okay – unless you know it’s specifically done for your state. Now, the ideal approach should be to hire an attorney in your state to help you with the state planning documents. If that’s not affordable and you use something online, be certain that it conforms to your state’s laws.

“I don’t want to ‘nay say’ using internet documents, because many people cannot afford to go to an attorney. One of the biggest concerns I have with using internet documents, is even if the documents are robust and have lots of provisions, do you as a lay person, understand what selections you’re really making? If you’re going to go that route, spend some real time in advance to study and learn about each document and what you’re doing, so you’re at least informed. Sometimes getting together with a group of family members, friends, or other people with similar circumstances can be of help. If doing the documents together as a group, you can ask questions of each other. Discussing a document like a healthcare proxy with a group of five or six may get you a better result than if you just try to do it on your own.

“Another concern I have with internet forms is that they are not really tailored to address your specific circumstances. So for example, and this is important, if you have MS, which is often typified by an exacerbation or an unexpected attack, and you are hospitalized for a period of time, your symptoms are worse for that period of time, but then typically subside. During this period of time, you may not be able to take care of tax, legal, and financial matters.

“With the typical legal document, once you’re considered ‘incapacitated’ under the terms of the document, legally by state law, you permanently lose your position to act on this document. However, if you have a revocable living trust with a cotrustee, then you may have an agent or a successor trustee take care of things for you until you have recovered and can manage the trust yourself. This is just one way among others to ensure that you may continue to oversee your financial planning. With a disease like MS and other chronic illnesses that are typified by an attack, you need to be sure that the documents are tailored to address your specific circumstances.”

Financial planning for a child with MS

Foy points out, “If we are talking about a child with MS, parents need quality legal advice to consider a special needs trust. These trusts are critical to outline the continuation of care in the event of a death or incapacitation of the current parents or other caregivers. These trusts will also contain the language necessary to protect federal and state benefits.”

Shenkman explains, “If you have a child with MS, you need to make sure there’s financial resources for the child. Talk to an insurance consultant. Talk to a financial planner. Better off to start cutting your budget a little bit now to help protect and provide for a child. It’s important to get on a financial plan, stay on a strict budget, and save for what the future may need so you can protect that child.

Photo of a father and son doing homework“You need to have an emergency document done to authorize someone to take care of the child should something happen to you, making sure that insurance and other information is available. A special needs trust, also known as a supplemental trust, is one of the documents that you may create to give your child financial security while not affecting government aid that your child is or will be receiving. Be mindful that the government aid isn’t tainted or lost because money has been put in the child’s own name. You really need a specialist to handle this type of a trust.

“One final point. If you’re getting on in years and you have an adult child with MS, you still need to address your own care and financial stability. While you’re helping your child who has health issues, you need to ensure that you are also protected. So it’s really planning for both generations, your generation and that of your child.”

Closing Notes

Legal and financial planning for one’s future is an extremely detailed and important responsibility, particularly when a disability or chronic illness is involved – whether it be a spouse, child, or other family member who may need care and guardianship after his or her primary care partner is gone. Readers are strongly encouraged to do their own research to learn more about the topics presented in this article. On the following page, several resources are listed, all of which provide more in-depth information on legal and financial planning.

Readers are also reminded that laws governing financial planning differ greatly depending on the state where one resides, so state resources should always be consulted. Ideally, speaking with a qualified legal or financial expert who specializes in serving the disabled or chronically ill communities will provide the best results and help ensure a positive financial future for you and your loved ones.

Photo of Attorney Martin M. Shenkman, CPA, MBA, PFS, AEP, JDMSAA would like to thank Attorney Martin M. Shenkman, CPA, MBA, PFS, AEP, JD, for his invaluable assistance with this important article. Shenkman is the founder of Shenkman Law, located in New Jersey and New York, and specializes in estate and tax planning, planning for closely held businesses, and estate administration. In addition to serving on several editorial boards for tax, estate, and real estate publications, Shenkman has written 44 books and more than 1,200 articles. A recipient of many awards for his work in writing, education, and legal matters, Shenkman has been a frequent source for numerous national publications and a guest expert appearing on television and radio shows. Active in a number of charitable and community causes and organizations, Shenkman is currently developing a new website,, dedicated to educating professional advisers on planning for clients with chronic illness and disability. Shenkman received a Bachelor of Science degree from Wharton School, an MBA from the University of Michigan, and a law degree from Fordham University School of Law.

References and Resources


  • Clifford D, Make Your Own Living Trust, 14th Edition (NOLO 2019).
  • Clifford D, Estate Planning Basics, 9th Edition (NOLO 2017).
  • Clifford D, Quick & Legal Will Book, 8th Edition (NOLO 2017).
  • Nickerson J, One Evolution at a Time: A Special Needs Planning Guide (Special Needs Forum 2017).
  • Shenkman MM, Estate Planning: For People with a Chronic Condition or Disability, (Demos Medical Publishing 2009).
  • Urbatsch K and Fuller M, Special Needs Trusts: Protect Your Child’s Financial Future, 7th Edition (NOLO 2017).
  • Wright H, The Complete Guide to Creating a Special Needs Life Plan: A Comprehensive Approach Integrating Life, Resource, Financial, and Legal Planning to Ensure a Brighter Future for a Person with a Disability (Jessica Kingsley Publishers 2013).
  • Wrubel R, Financial Freedom for Special Needs Families: 9 Building Blocks to Reduce Stress, Preserve Benefits, and Create a Fulfilling Future (Rosalibean Publishing 2017).


Provided by Special Needs Alliance (

  • Estate Planning for Parents of Children with Disabilities
  • Brief Guide to Special Needs Trusts
  • Pleat TA, “Considerations Selecting a Family Trustee,” SNA, Sept 11, 2018.
  • Special Needs Alliance, “Two Different Types of Special Needs Trusts,” The Voice Newsletter, Sept 2017, vol. 11, issue 6.
  • Thompson KA, “How to Get Started with Special Needs Planning,” SNA, Apr 3, 2018.
  • Fleming RB, Krooks C, and Krooks BA, “Special Needs Trusts, How Much Trouble Are They to Manage?” EP Magazine, Mar 2015.


Special Needs Alliance

The Special Needs Alliance (SNA) at is a national organization comprised of attorneys dedicated to the practice of disability and public benefits law. This website offers a wealth of financial planning and legal information for individuals with disabilities. In addition to locating an attorney within one’s state who specializes in financial planning for individuals with disabilities, visitors to the website may also find a number of informative articles, videos and podcasts, publications, and more.

Nolo Network

According to Nolo’s website at, with more than 50 web properties, the Nolo Network is one of the web’s largest libraries of consumer-friendly legal information – all available for free. Although not specifically designed for individuals with disabilities, this website offers extensive legal information, a lawyer directory, a large collection of legal articles, and free legal documents, among many other resources. Nolo also publishes and sells books and software on a host of legal topics.

Academy of Special Needs Planners

Found at, the Academy of Special Needs Planners consists of special needs planning professionals such as attorneys, financial planners and trust officers who assist in providing the highest quality service and advice to persons with special needs and to their families. The Academy also provides direct information to persons with disabilities through a consumer website and monthly e-mail newsletter. If seeking information on a specific topic, a search on their website brings up a number of informative articles.