I must admit, I didn’t much like dogs. I was raised to be afraid of them, and I brought that fear into my adulthood.
But 13 years ago, I had bigger issues. My wonderful, fun, beautiful, brilliant daughter was enmeshed in the throes of OCD—obsessive compulsive disorder. Fifth grade is a very difficult year socially for anyone, and she was being tortured by the need to turn on and off light switches 26 times, to pack and unpack her backpack the same number of times, rendering her incapable of leaving her classroom, and unable to cross a line—impossible in a tiled school hallway. So, fifth grade is a minefield for anyone, and she was primed for failure.
She needed a friend. And so I, who had sworn that we would never get a dog, got Luckie. For my daughter’s 12th birthday, we wrapped a number of gifts. First, she opened a placemat with little colorful paws on it. “Okay, I guess” she said, “Thank you.” Next, she opened a package containing a bowl, with colorful dog bones. She looked more confused. We encouraged her to open the next gift. Inside was a leash. She looked at me, she looked at her father. She had the most wonderful expression on her face. Confused and hopeful all at the same time. She stammered, “but, you said, I could never have a dog.” I told her we had changed our minds. I will never, ever forget that moment of pure joy.
My daughter had a friend, and called Luckie her sister. I will never know who was luckier, Luckie for having my daughter, or my daughter for having Luckie. Or me, who was lucky for having them both.
A year or two later, my daughter was off at sleepaway camp, and her father and I decided to divorce. As so many of you know, special needs children bring added stress. I found out I had a benign brain tumor. Reports from camp were not good. And I was angry. Angry at the entire world. It would have been easy to stay in bed and hide. But I couldn’t. I had to walk Luckie. So, Luckie and I walked. And walked and walked and walked. We walked until I finally opened my eyes and saw the sun shining, and that I was breathing and grateful that I was able to walk and breathe and hope.
So, thank you, Luckie, for everything you did for us, and for the joy you brought us.
As many parents of special needs kids know, raising a disabled child is much more expensive than raising typical children. I have previously discussed some of the extraordinary costs in my post on Divorce and Special Needs Children. Many states mandate that parents of a disabled child continue supporting these children, even after they are no longer minors. New York does not follow this mandate, allowing the state to support our disabled children instead. However, if the child is living with a divorced parent, then that parent often has to shoulder many of the costs — with no contribution from the other parent. After the child reaches the age of 21 in New York, there is no way to force that other parent to shoulder any of the financial burden.
An Amazing Statistic
Karen Czapanskiy, a Professor at the University of Maryland School of Law, has proposed a solution she calls “Chalimony” . She states “Parents of a child with autism, on average, have lifetime earnings of nearly a million dollars less than other parents.”
That is astounding. But it is understandable. Many of us put our careers on hold to take care of our children, to drive them to doctor and therapy appointments, to ensure they are cared for properly. Even after the children are grown, even if many of them do not need hands-on care anymore, there are years missing from career paths.
Czapanskiy suggests: “[Chalimony] would be available to the parent with whom the disabled or chronically ill child lives most of the time if that caregiver is unable to be employed full-time because of the child’s special needs. The child’s other parent could avoid paying chalimony if he or she were meeting enough of the child’s needs to permit the primary parent to work full-time.”
I would take it a step further. Any parent who has stayed home with a special needs child and missed out on the opportunity to advance a career, also deserves chalimony.
Several days ago, I was honored to learn I had been nominated to receive a Lovely Blog Award from Connecticut Special Education lawyer Jennifer Laviano, author of the SpecialEdJustice blog.
Quite honestly, I am proud of my blog. I have found it to be an effort of love. I love sharing what I’ve learned both as the parent of a child with special needs, and as a lawyer who hears many stories from parents concerned about the future of their children.
So, with thanks to Jennifer, I urge you to check out these informative, educational blogs, each of which is lovely in its own way:
- Terri’s Special Children Blog an About.com Guide to Special Children
- Personal Injury Blog Long Island Personal Injury Lawyer Jeena Belil
- New York Real Estate Law Blog The Devery Law Group, P.C.
- Agriculture Law and Policy Blog Rincker Law PLLC
- South Florida Estate Planning Blog David Shulman, PL
- Massachusetts Estate Planning and Elder Law Leanna Hamill, Attorney at Law
- Massachusetts Elder Law Blog The Golden Law Center
- Blog for Profit Using a Blog to Market Your Business
- Oregon Estate Planning Blog Candice Aiston, Attorney at Law
- Bob Kraft’s P.I.S.S.D. (Personal Injury, Social Security Disability) About the way injured and disabled persons are treated by the government
- Lichterman Law PLC Blog Peace of Mind for Your Family and Business
- Legal Ease Blog Helping law firms and law firm managers create more productive, profitable and enjoyable practices
- Ask the Taxgirl Because paying taxes is painful… but reading about them shouldn’t be.
- Michigan Estate Planning Lawyer Blog Witzke Berry PLLC
- Successfully Solo What every attorney should know
The rules for this award are:
1. Accept the award, post it on your blog together with the name of the person who has granted the award and his or her blog link.
2. Pass the award to 15 other blogs that you’ve newly discovered.
3. Remember to contact the bloggers to let them know they have been chosen for this award.
Luckily, I know a few attorneys who would be happy to help me follow any and all rules!
How do parents of children with special needs, whether that child is 5 or 35, predict just how much money their disabled child will need for their future comfort? There are many variables to consider, including: life expectancy; the rate of inflation; investment return; the amount of benefits the government will provide decades from now (although it is fairly safe to assume recipients of Supplemental Security Income (SSI) will never receive enough cash benefits to rise above the poverty level).
Luckily, special needs financial calculators are available free of charge to help you and your estate planning attorney or financial planner determine the cost of providing your child with lifelong support. Just click on one of the following links to start the process:
Taking the Guesswork out of Funding a Supplemental Needs Trust
Step One: Assess your child’s future capabilities. This is more difficult if your child is still young. Speak to your child’s medical professionals and ask for an evaluation of your child’s prospects, both short- and long-term. If your child is already an adult, you will already have a better understanding of what his or her needs are now and might be in the future.
Step Two: Take an inventory of what you already own. Add life insurance policies, if any.
Step Three: Identify current and future living expenses and future income sources for your special needs child. Your disabled child may be able to earn income and contribute financially. Consider the government benefits and support your child is already receiving or might receive in the future. If your child is currently living with you, will that child be eligible for subsidized housing? Will there be gifts and inheritances from other family members?
Step Four: Place a dollar value on anticipated income and expenses. The online calculators use broad categories such as housing, transportation, medical care, education, or you can use more detailed lists within each category.
Step Five: Calculate! Using assumptions about the rate of inflation and your investment returns, you should now have a target to help you plan for your child’s future needs.
Working Towards Your Goal
Although many of these questions are very difficult for parents to consider, and very difficult to answer, beginning the process of planning for the future security of your loved ones will make you feel more secure now.
As always, if you have any questions about this post, please feel free to either call or contact me through the contact or comments form.
Many parents are concerned about how they can fund a supplemental needs trust, especially in these rough economic times. Parents are also concerned about how their other children will feel if they divide their estate assets unevenly, providing more for their siblings with disabilities. These siblings might have even more resentment if they end up being financially responsible after you are no longer able to supplement your special needs child’s benefits. Children with autism have a normal life span and could easily need financial assistance until they are well into their 80s! Additionally, they may need to pay for care that you are no longer able to provide, such as a care manager or help with cleaning and shopping.
Parents with a disabled child should consider buying life insurance to wholly or partially fund the special needs trust. There are several types of insurance to consider. Term life is the least expensive option, but the premiums increase each year as the insured (that’s you) gets older. Since these policies need to be renewed, at some point these policies are typically dropped due to the steep increases in premiums as you age or experience health issues. There are several types of permanent life insurance including whole and universal. The least expensive option is known as survivorship or second-to-die life insurance. This term policy is payable only upon the death of the second insured, when it is most needed. It is best to consult a life insurance agent with expertise in this area.
If you have any questions about this post, please feel free to call or drop me a line on either the comment or contact form.