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When I was a teen, my maternal grandfather Jerry died from a sudden heart attack at age 60. His death was immediate. Later, when I was a young man, my favorite uncle Jack (Jerry’s son) also died quickly from a heart attack.  He was 58. Now that I am the same age, I worry that I will be hit with a sudden heart attack–just… about… now!  But things have changed, and these days life usually ends slowly. Stephen Kiernan’s book, Last Rites: Rescuing the End of Life from the Medical Profession reveals that since 1960, the life expectancy of a North American adult has been lengthened by 31 years. This is a stunning change in human life expectancy within an incredibly short time frame. He notes that even in 1978, the most frequent causes of death among adults were sudden–heart attack, stroke, and workplace accidents. Well, death from sudden causes may be down dramatically, but we have not defeated death–only delayed it. We’ve traded a quick death for the long, downhill trajectory of age-related memory and/or mobility losses. Terry Schiavo famously died without documents outlining her wishes for or against life-prolonging treatment. The ensuing controversy surrounding the decision to remove Terry from life support was a tragedy, and should serve as a wake-up call to the rest of us.  Everyone should create a simple power of attorney (or a living will) appointing a trusted loved one as a health care decision-maker. However, you should be aware that Health Care Powers of Attorney (HCPOA) and living wills are woefully lacking if you have a diagnosis of long-term illness such as dementia, Alzheimer’s, or Parkinson’s disease. These documents use “triggering language” which creates an authorization to act only when you have been diagnosed as “terminally ill,” which is generally defined as having a condition which will be fatal within six months or less. Doctors do not consider Alzheimer’s or other long-term illnesses to be ‘terminal illnesses’. Patients need a way to make written declarations of their desire (or lack thereof) for antibiotics, tube-feeding, etc. when they are in the late stages of these long-term illnesses and likely afflicted with dementia. Watching a loved one endure long-term suffering is one of the most terrible experiences there is.  I would have loved to have shared more years with my grandfather and uncle–but when I see friends and clients suffer multiple year declines, it makes me wonder if maybe Grandpa Jerry and Uncle Jack were “the lucky ones.”
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It is no secret that senior citizens are the wealthiest segment of the U.S. population. Much has been written and said about the trillions of dollars that will ‘change generational hands’ as the current seniors pass their wealth to their children/grandchildren. Unfortunately, seniors have to contend with a dirty little secret that was put in place by the current Republican administration when they passed the Deficit Reduction Act of 2005 (DRA). The DRA made changes in the way that the government will punish seniors for acts of both charity and giving. The Medicaid rules presume when a senior makes a charitable or family gift, that the gift was an attempt to get rid of excess assets in order to qualify for Medicaid nursing home expenses. That’s right—seniors are guilty until proven innocent. The burden of proof is on the seniors to show that when they gave money to their church or child, that they had some other reason than to qualify for Medicaid. This DRA rule creates a cruel penalty of ineligibility for Medicaid services if and when a senior who gave away money needs nursing home services at any time within 5 years after the gift. Our government has created a punishment for seniors who may suffer chronic long-term illness within 5 years after a gift. As long as this law is in place, seniors must remember that the IRS gift tax rule allowing gifting up to $13,000 tax-free is only a tax rule. Giving away $13,000 may cause a senior to suffer a loss in nursing home coverage of 2 to 3 months if they need such assistance within 60 months after giving that money away. Thanks to our government, giving may now be hazardous to your health…care!
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What do you do if you’re an elderly parent still caring for a disabled child who can’t care for him or herself?  Last week I wrote about “empty nesters” who have never really had an empty nest. These are parents of children with disabilities such as autism, cerebral palsy, hearing loss, mental retardation, vision impairment, muscular dystrophy, genetic and chromosomal disorders, Down’s syndrome, and fetal alcohol syndrome, to name just a few.  Some disabilities are apparent at birth, and others are caused by accidents or manifest themselves as mental illness later in life, but the end result is the same:  The child is being cared for by a loving parent who worries about who will provide care for that child once the parent is gone. The most common advice of the attorney who does not practice in the area of special needs trust planning (or what we prefer to call Tender Loving Care (TLC) Trusts) has been for the parent to disinherit the child.  Disinherit means to make sure you leave that disabled child with absolutely no allocation of money directly.  This gives the simplistic idea that one should just leave extra money to one of the other children who will provide care for the disabled child and money management.  Even in the best of families, this is usually a disastrous idea for the following reasons:
  • It’s extremely difficult for an individual who receives extra money not to comingle that money with their own, and eventually treat it as their own.  That money would become available in the event that the healthy child becomes divorced or is otherwise subject to loss to a creditor.
  • In many families the dynamic is such that the healthy children have some anger or resentment toward the disabled child because that sibling got more attention.  Thus, healthy children may not want the role of caregiver and banker for their disabled sibling.
  • And most unfairly, leaving money to one child for disbursement to another child puts a target on the back of the healthy child, in that all complaints and concerns about money will be directed to that individual.
It is the job of the elder law and special needs attorney to assist families like this in developing proper planning so that we can help the parents to create a better way to manage both money and care after they are gone. A TLC Trust is designed to work in partnership with any public benefits such as Supplemental Security Income and Medicaid.  It is a way for parents to leave money for the needs of their child beyond what public benefits would pay.  A TLC Trust can provide supplemental care for recreation, social activities, pets, special therapies, entertainment, and even vacation opportunities for a child by the use of trust money.  A TLC Trust can also purchase professional care management, which can enhance not only the dignity, but the quality of life of a disabled child. The TLC Trust is a far more loving and caring solution to the challenge of providing for a child with special needs. Please don’t disinherit your child with a disability; contact an elder law attorney who can assist you in designing a custom plan to meet the very special needs of your child, so that he or she can be given tender loving care after you have passed away.
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My wife and I have almost reached the empty-nester stage.  We look forward to that event with excitement, and a little anxiety too.  We have raised four children, ranging in age from 32 to 17.  After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester. Not everyone becomes an empty-nester.  And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting.  In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled.  Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent. This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them.  Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age.  But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents.  In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well.  This raises new challenges for those parents and their children. This type of disability is really quite common.  “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments.  Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently.  Most of these physical and mental issues are in evidence long before a child reaches the age of 22.  These disabilities will last the lifetime of the affected person. So how can a parent be assured that a disabled child will be taken care of after the parent is gone?  Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling.  This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child.  Check back next week to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.
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