When a Member of your Blended Family has Special Needs

According to The National Survey of Children with Special Healthcare Needs, 12.8% of children under age 18 in the United States, or about 9.4 million children are estimated to have special healthcare needs. These special healthcare needs span from very severe- totally disabled to more mild needs. Blending families comes with its own challenges; biological children, stepchildren, exes, in-laws, ex-in-laws, visitation, child support, alimony and so much more. A family member with special healthcare needs brings another element to the blended family.

Take Abagail and Ian a middle-aged recently remarried couple trying to work through their differences. Abagail is 47 and has twin daughters (Mya and Kate) who are 23 years old from her first marriage. The second twin, Kate, was born autistic with a rare genetic disorder causing a serious bone disease making her bones extremely brittle. In fact, Kate is unable to walk, talk or care for herself in any manner. Everyday Abagail must bathe, dress and feed Kate. Kate also has various doctor’s appointments at least 2-3 times per month as well as therapy twice per week, a special diet, and a significant amount of prescription medication. Abagail has health insurance, but she still pays hundreds of thousands of dollars in copays and out of pocket expenses for Kate’s medical care. She especially pays a significant portion of the cost for Kate’s many surgeries. Abagail is aware that Kate will never reach independence and will need extremely expensive medical care for the rest of her life. Her daughter Mya on the other hand, is well spoken, a recent college graduate, and had just gotten a new job and apartment. Ian was 44 and had one son (Ian Jr) who was 17 years old from his first wife. Neither Ian nor his son had experience with anyone requiring special healthcare needs. He was baffled by the amount of time and energy that it took out of Abagail to care for Kate’s needs. He was also incredibly surprised when he learned about how much it cost Abagail each month for Kate’s care.

Abagail and Ian had never really discussed what their plans were in the event of either of their death or disability. They had not even given much thought to what would happen if Abagail were the first to die. Who would be willing to take care of Kate for the rest of her life? Being the custodial parent, Abagail had Kate full-time. Abagail’s ex-husband shied away from dealing with the reality of Kate’s ongoing needs. They too had never discussed a plan for Kate if Abagail was unable to care for her due to death or disability. Ian was afraid to approach the subject because Abagail was extremely sensitive about Kate due to her condition. Ian also knew that if something were to happen to Abagail, he needed to know what to do about Kate. Ian finally mustered up the courage to have the discussion with Abagail because he was genuinely concerned. Some of the things that Abagail and Ian need to discuss concerning Kate’s special healthcare needs:

  1. What is the plan for Kate’s long-term healthcare needs?
    • Will they hire help?
    • What part will her father play?
    • What if Abagail is unavailable due to her own disability?
    • What is the plan for financing pricey surgeries?
  2. What is the plan for Kate’s care upon Abagail’s death?
    • Is there a Special Needs Trust in place to handle any assets that Kate will inherit?
      • Since Kate will never gain independence or the mental capacity required to contract, she will be unable to inherit anything in her individual name.
      • It is imperative that her caretaker(s) have a way to finance her healthcare when one or both of her parents die.
      • It is also imperative to carefully select a Trustee who understands the seriousness of prudent money management and the gravity of the undertaking.
      • If there is no trust in place, Kate will always need a Power of Attorney to handle her financial affairs.
    • Are there Medical Directives in place naming a Healthcare Power of Attorney?
      • This person would need to understand the complexities of Kate’s medical history and how Abagail has historically handled healthcare decisions.
      • It can be a family member, a trusted friend, or someone else whom Abagail trusts to make the right decisions concerning Kate’s health.
  3. How will Ian and Abagail incorporate the needs of their other children with the demands of Kate’s care?
    • Abagail still has Mya to think about as she plans her estate. Even though she is aware that Kate will have ongoing medical needs for the rest of her life, she does not want to leave Mya out of the equation.
    • What if Abagail and Ian decide to have a child/children together? How will a new baby/babies play into the family? Kate’s special needs is the reason why Abagail and her former husband decided not to have more children.
    • How will Abagail have the time and energy to bond with her new stepson Ian Jr?
    • What role will Ian play in Kate’s care and how will he bond with both she and Mya?

As you can see, Ian and Abagail have a lot to think about as they discuss the extremely sensitive topic of having a special needs family member. Many blended families gloss over the real financial and legal impact of their decision to blend. It feels easier to avoid the subject or think that love is going to make all of the real issues go away. This could not be further from the truth. The above list is just a thought starter for some of the things that any couple with a special needs family member should discuss. Success will require the couple to continuously communicate openly and honestly so that the silent issues do not wear away at their new marriage.

If you or someone you know is contemplating entering a blended family situation and want to conduct a comprehensive review of all of the legal and financial considerations that a blended family needs to think through, do not hesitate to contact me at 703-630-9170 or raina@reflectionslifeplanning.com.  The consultation is good for dating and engaged couples planning for marriage or cohabitation. It can also help married or cohabiting couples who want to take a step back and evaluate the legal and financial impact of their blended family situation.

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