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Life is full of change. In fact, ‘change’ is the only condition that we can be certain of – despite that most of us work pretty hard to keep things the same. Adaptation requires energy.

Change – is essentially the transition from one condition or state to another. Whether any new condition is due to growth, development, tragedy, geography or any other factors that make up our lives is irrelevant. Change has to happen to move us and our families through life.


Living with change is the marathon of existence. Your financial marathon is one of the longest races you will ever run. Most of what we plan now (depending on your family) should be done with a long term perspective, but balanced with immediate relevance. Like a marathon, planning needs to take place sequentially – in time and order. Unlike a marathon, we don’t always begin our financial marathon at the ideal beginning. Fortunately, you can start at the place where you are right now.

Certain points during the lives of families will require concentrated preparation; more planning than others. Those points are the places in time ‘change’ is either about to occur or has already and life will move from one plateau to another and lives necessarily and irreversibly change; marriage, children, education, illness, accidents, career choices, aging parents, retirement and our own advanced age care. Discussion and preparation will be an enormous help.


The first task is ‘Discovery.’ You’ve got to begin. Families should determine exactly what their financial model looks like. There may be an opportunity to ‘fix’ some areas or address others that were neglected or made when life looked quite different. The best financial plans are relevant and efficient. Ultimately, all families will need to work through Financial, Legal, and Estate issues. These issues require coordination to provide the most flexible, efficient and relevant solutions.

Financial concerns; families should consider cash management, cash reserves, financial flexibility, protection, risk assessment, asset coordination, and tax consequences during both the accumulation and distribution phases (before and after retirement).  Families with Special Needs members may find more challenges managing income and resources simply because the demands on these can be exponentially higher. Caregivers may curtail work and earning potential in order to provide care (Lukemeyer, et al., 2000). Care for disabled children represents a care cost increase estimated to average $30,000 annually (Baldwin, 2012). Thankfully, new technology and research has enabled the capability to treat many significant disabilities. Unfortunately, the costs associated with the treatments are more likely to inflict a significant financial burden (Hackney, et al., 2016).


Legal Issues: Parents may be required to act on behalf of someone who isn’t capable in matters related to healthcare, housing, lifestyle and legal issues. Choices and intentions should be accurately reflected in documentation including, wills, trusts for traditional children and separate Special Needs Trusts (SNTs) for disabled members. Trust protectors, trustees, guardians, ancillary documents and directives, guardianship, and letters of intent may be required. An attorney who understands your family and wishes will be invaluable. An attorney who specializes in and has practical experience both writing and executing Special Needs Trusts (SNT) is a necessity. It’s not enough to say that they are licensed to write a SNT. The nuances inside the language of a Special Needs Trust are critical to whether or not your child will be properly and appropriately taken care of throughout his or her entire life in the manner you intend.


Estate Planning: Issues like retirement distribution needs, legacies, inheritance and strategies for long term or continued care need to be considered. It is entirely possible to fund and live a very satisfactory retirement AND leave a financial legacy to a person or a community. Avoiding financial products that limit financial flexibility to achieve this type of planning is critical. Many of these options can be explored well before your estate ever needs to access the funds it holds. Again, the sooner the better. For families with Special Needs members, long term financial concerns are compounded. Parents may have to make choices between vacation and treatment or even delay retirement to cover or recoup treatment or care costs. In addition, parents may have to manage the financial life of a child as well as theirs. For dependent adults with jobs, it may be necessary to have a good understanding of which assets are allowable so that benefits are not inadvertently curtailed by growing independence.

Additional planning may be required to address:

  • Additional transportation costs (wheelchairs, specially equipped vans, etc.)
  • Additional travel costs (re-location and medical specialists)
  • Balancing income and career choice with providing care, nursing care, respite care
  • Costs of long term therapies, medications and additional medical exams
  • Education and housing costs (specialized curriculum, supervised adult housing)
  • Legal costs (guardianship, attorneys, etc.)

The sooner you start, the better. Don’t worry that you’re starting too soon if your special needs child is still an infant. There is plenty of planning that depends on the parents that can be done now instead of waiting until later – when you’re busier. At this point, the most important type of planning a family can do is that which maintains and enhances financial flexibility and protects the estate against medical bankruptcy as much as possible. This is also a great time to concentrate on some other protection issues your family will rely on should an accident, health crisis or other disability occur to a caregiver.

Financial Planning Milestones for a family with a Special Needs Child:

As soon as possible; begin the Social Security Disability Income (SSDI) application process. While you may be able to provide income that, right now, eliminates the child’s qualification for SSDI income, obtaining the qualification allows you to take advantage of a few other entitlements on behalf of your child. Some of these benefits have waiting lists of 15 years. So, it’s a very good idea to start early. Begin protecting your assets to the extent that you can. The sooner you start, the easier and less expensive it is.

Age 4-15. If your child is high school-aged, it is time to begin your Letter-of-Intent. This document will let others, i.e., guardians, caregivers, extended family, medical professionals and the courts know what your intentions are throughout his or her life. This document can be as lengthy and involved as you like – or as simple, but will be an invaluable source of practical information should anything happen to the caregiver or parent(s).

Age 15. The late teenage years are a critical time of transition and the one that I hear most parents worry about. Our lives are so busy during these years and time seems to race by at an incredible pace. Why 15? Two reasons. Guardianship is a big issue for Special Needs families. Those discussions and plans should begin around age 15 and will commence at the child’s 18th birthday. Some families will need to consider housing and support for their special needs children. In essence, this planning will feel as though two retirements are being planned simultaneously. If you haven’t yet found that financial professional who works specifically with the special needs community. It’s time to begin that search in earnest. For traditional families, this is about the time that college attendance and tuition start to ‘get real.’ There are literally bunches of ways to help pay for college that don’t involve taking on ton of risk or minimizing your own retirement. Find someone who can explain allthe options, not just the ‘savings’ and ‘529’ options.

Age 18. Guardianship for adult children is critical. Did you know that medical facilities don’t have to allow you access to your child or his or her medical information despite that you support them once they reach the age of 18? Guardianship, while it may cost a little at first and is a bit of a nuisance to maintain, is worth every minute and penny you spend on it.

Finally, your retirement, the death of any parent – either yours or one of your children’s – and your own Long-Term Care are points at which all of us will necessarily make financial decisions or need some means of funding the expense. This is critical as parents with a special needs child will have to plan retirement differently. They may have to relocate for care, cut lifestyle expenses or even delay retirement to ensure the needs of their child is met They may also have to allocate funds for residential needs of the child throughout their lifetime.


It’s easy to see why a lifetime of financial planning is a lot like a marathon. There will always be new scenery, challenges, sprints, long-hauls, and energy walls along with easy strides, triumphs, unrealized stamina, success and achievement. But nobody ever finishes a race they never begin.

Bibliography/References Used for this Article

Lukemeyer, A., Meyers, M., and Smeeding, T., (May, 2000). Expensive Children in Poor Families: Out-of-Pocket Expenditures for Disabled and Chronically Ill Children in Welfare Families, Journal of Marriage and the Family, v 62, p 399-415.

Baldwin, S., (Spring, 2012). The Costs of Caring: Families with Disabled Children, The Future of Children, v 22, i 1, p 69-74.

Hackney, D., Friesner, D., and Johnson, E., (6 June, 2016). What is the actual prevalence of medical bankruptcies?, International Journal of Social Economics, v. 43, n, 12. Pp.1284-1299. Retrieved 10 December, 2016 from

Post Author: Beth Freudenburg

I am lucky! I have been given the chance to both do work that I truly love and engage in that work on behalf of families who inspire me every day!
My best days are spent helping families learn how their money works, how to grow it, how to protect it, and how to position themselves to spend and enjoy more of it so they are happier now. As a retirement income specialist I help clients secure a retirement income stream they can never outlive and that takes healthcare into account. Clients learn how to preserve their wealth for generations to come.