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Addressing the Various Needs of Special Needs Parents

The Unique Financial and Personal Needs of Special Needs Parents

I remember being in the crowded elementary school gym one time, when people literally just stepped over my daughter while she was having a seizure, as though she were a bookbag.

I remember standing in line at the grocery store hearing a woman complain bitterly to her companion that her son wasn’t chosen for the team. I was thinking to myself, “You have no idea how good you have it.”

While it was not my intention to shut anyone out, the fact is that I was shut out anyway.

It was not that long ago that I had a full circle of friends, was invited to every party, and my social calendar was booked three months in advance. That stopped soon after my daughter was diagnosed with epilepsy. While it was not my intention to shut anyone out, the fact is that I was shut out anyway. Why? Because special needs parents experience many things, including isolation. Whether it was “them” shutting me out, or me shutting them out (I don’t think so), being the parent of a special needs child was a lot of things, including isolating.

The Financial Burden Faced by Special Needs Parents

My life as the parent of a special needs child has also been a financial struggle. There was no doctor I wouldn’t pay to see, no medicine I wouldn’t agree to try (no matter that it may or may not have been legal in the United States, or a trial drug that was not FDA approved, or even if it were a “black box” medication) because the important thing for me was to keep my daughter alive- and while she was alive, to give her the best life possible.

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This meant not changing jobs, as my then-current employer accepted that I often had to leave work. I still got my job done, often in the middle of the night, and I felt I had job security. Insurance became a large concern as well. Was it more important to stay with a lower paying job that provided the health insurance my daughter required?

Special needs parents face significant out-of-pocket costs:

  • High medical costs, medical care, medication and medical equipment
  • Required time off for health appointments and hospital stays
  • May cause one parent to stop working or cut back hours
  • Ancillary costs – childcare for siblings, increased utility bills, home renovations

In addition to a constant fear of the unknown future, special needs parents must address the unknown present as well. A child’s lifelong disability becomes a parent’s lifelong obligation (it doesn’t end as the child turns 21, 25 or 30) to provide for and be that child’s advocate, now and forever.

In addition to a constant fear of the unknown future, special needs parents must address the unknown present as well.

Why am I telling you this? Because I am obviously not the only one in this position, and I have a message for those of you who are special needs parents and those who want to be supportive to those in your life (be it “that kid’s mother” or someone close to your heart) who face this mostly unspoken about topic and aren’t sure what to do to help.

Small Steps Can Make a Big Difference

While being the parent of a special needs child adds tremendous pressure and exhaustion, there are things to consider that can provide peace of mind. Below are a few tips that I wish someone had shared with me.

To be quite honest, however, I did not want to seek out help, when maybe I should have. I was blindsided and ever-hopeful the right medication to alleviate my daughter’s symptoms was around the corner. I was too busy trying to keep my job and to keep my child alive. That was over ten years ago.

To be quite honest, however, I did not want to seek out help, when maybe I should have.

In retrospect, though, a few of these ideas may have helped me then, and I hope they can help you, too.

On that very note, this is a “no procrastination zone”. There is a lot parents can do and while they may feel powerless in many of the challenges they are faced with, there are things they most certainly can do. A positive attitude and solid perseverance are required, every single day.  That being said, this doesn’t all have to be done in one day. Tackle any one of these items over the course of a month, or even a quarter:

  • Create a plan to quell some anxieties.
  • Gather a solid team. Here are the players to consider: doctors (of course); a vetted, special needs attorney (check out references and make sure your counsel has specific and updated training in the field – the laws are not forgiving of errors and this is not the place to save your pennies); accountant/financial planner (really examine the costs of your life – the original plan, along with the original mortgage, may no longer work; better to know that now); life insurance agent (what is the best policy? Perhaps you want to consider a “second to die” policy on older relatives currently in good health); specialized agencies focused on advocating for your child (i.e., government benefits/housing/medicaid specialists); and advocates specific to the child’s disability. In the internet age there is a wealth of information waiting, seek out a support network.
  • Obtain legal guardianship. It is best to start the process when the child is six months shy of age 18. If the parent does not take these steps, the ramifications are severe.  If the child is unable to make his or her own sound decisions, legal documentation is required for the parent to step in whether it be a medical, financial or legal issue. There is no substitute, and this critical step must be considered.
  • Create a Will and a Special Needs Trust. Here again, I urge the retention of a specialized attorney. The Will specifies what will be done with the parent’s assets after his or her death and the name of the intended choice for guardianship of the underage child.

Taking this step will also force the parent to face the reality of what will happen in the worst case scenario and to seriously consider who can handle this type of commitment, who has bonded with the child and who has the personality traits to deal with the day-to-day responsibilities. (Please also make sure to discuss your intentions before naming them).

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Not taking this action means leaving vital decisions, that will directly impact the child, up to a probate judge who has none of the personal knowledge critical to the child’s future success.

  • Create a Special Needs Trust to house and protect financial gifts and inheritances made to the child, insurance settlements and other monies. It is imperative that funds intended for the child not interfere with the child’s eligibility for federal and state benefits including Medicaid and Supplemental Security Income (SSI). It is often difficult to obtain eligible status for government status. Thus, once achieved no one wants to lose it by default. The laws are specific and to “win” you have to play by them.
  • Create a book about “My Child”. Construct a play-book specific to the child. This book will include, all in one place:
    • Your child’s particular needs, day-to-day routine and schedule (monthly, quarterly, annually)
    • Likes/Dislikes: foods, activities, peers and adults
    • Doctors contact information, medications (dosages and times) and allergies
    • Special equipment
    • Necessary training
    • EducationTransport
    • Community and other resources

Advocate for Your Child and Yourself

Learn the benefits you are entitled to. That means a dull read of your actual health insurance policy. Sorry, not the information packet provided by your employer, but the full actual policy. These are things you need to really know:

  • What is covered and what are the co-pays
  • What doctors/hospitals are network providers in the plan
  • What services are covered (lab work, surgical procedures)
  • Doctors visits
  • Medications
  • Copays/deductibles
  • Referrals/pre-certification
  • Appeal process if/when the insurance company says “no”

Be aware of some of the warning signs of financial trouble: expenses exceed income on a regular basis; using cash advances and credit for everyday purchases; skipping payments on bills; and/or no savings for retirement. If this looks familiar, there are options to consider, including communicating with creditors to advise of the medical situation and seeking payment arrangements and/or negotiation of a settlement.

Special Needs Parents are Special Too

I recognize there is a lot of responsibility on the shoulders of special needs parents, and I do not intend to be burdensome by adding to the pile. Unfortunately or fortunately, depending on the day of week and year, the shoes I wear may look something like yours, and if taking any of these steps can bring you a bit of peace, then I have done my job.

Wishing everyone wonderful health, and if that is not in your stars, then I am wishing you the best quality of life while struggling with those health issues. If this does not apply directly to you, be aware of those around you to whom it does. A little empathy and encouragement go a long, long way. Trust me, I’m a lawyer.


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About Michelle Gershfeld

I’m a debt settlement and bankruptcy attorney who negotiates resolutions between clients and their creditors. I am also a real estate attorney involved in both sides of purchasing and selling distressed real property. I am passionate about teaching people about money and helping individuals of all ages achieve financial independence and success in a "no…

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