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FATHERHOOD WASN’T one of my life goals. I didn’t feel like I had a wonderful childhood, so I didn’t think I had much to offer my offspring that would help them to lead a wonderful life. If children happened, okay, but it was never a goal.
My first marriage ended because I placed money over fatherhood. I thought not having kids would speed my path to wealth. My wife disagreed—and walked out.
When I met my current wife, I thought about the whole kids thing again. This time, I decided a life without children might not be so great. Unfortunately, having a family was easier said than done. My wife suffered numerous miscarriages.
Finally, we found a fertility specialist who got the job done. My son was born and we were off to the races—or so we thought. Our pediatrician noted that our son wasn’t walking as soon as he should. She suggested a neurologist. A neurologist? What’s his brain got to do with his feet?
The neurologist discovered the first of many issues with our son. The good news: This was early on. As more issues arose, we were mentally prepared. I handled the financial end of things. My wife became the primary caregiver.
My goal for my son was for him eventually to have a job. I saw that as the first step on the road to independence. His public school education was in self-contained classes, not mainstream with all the “typical” students. Typical is the term used, not normal. Do you know what a normal teenager is? I don’t. They’re all weird.
During his high school years, which continued until he was 21, my son spent time “job shadowing” at local businesses. I assumed one of his employers would recognize his brilliance and give my son a job upon graduation. That never happened. He finally got a job at our local grocery store collecting shopping carts. But that job ended with the pandemic.
In those cases where children don’t possess the skills, talents and abilities to lead a typical life, you need to come up with another plan. That alternative plan is to rely on government support, which comes in three main forms.
First, there’s the school system. The system’s goal is to ensure each child, regardless of his or her issues, gets a free, appropriate public education. Not the best. Just appropriate. The result: Many parents fight to get more than the school can give—but they can’t all win.
Second, there’s health care, which is often provided through Medicaid. Depending on a child’s needs, the health care received may not be enough. When it isn’t, the additional cost may have to come from the parents’ savings.
Third, there’s financial support from the government. Supplemental Security Income (SSI) is available to individuals who are disabled or poor. Think of this as welfare. It’s money you can receive regardless of whether you’ve worked. You aren’t allowed to have more than $2,000 in savings to get SSI. In New Jersey, everyone who is on SSI is automatically eligible for Medicaid coverage. Yes, it’s free, but sometimes you get what you pay for.
Once the parents reach retirement and they collect their Social Security retirement benefits, their child is entitled to Social Security if he or she is classified as a disabled adult child, or DAC. That’s the situation with our son. To qualify, children must have had a permanent disability prior to turning age 22 and they can’t be able to support themselves financially.
DACs also qualify for Medicare once they begin receiving Social Security. In addition, they may receive Medicaid. This is referred to as a dual-eligibility health plan.
To receive SSI or Medicaid, you can’t have significant financial resources. For financially well-off parents, a common goal is to pass along their wealth to their children. But for the parents of special needs children, this is tricky. To ensure continued government support, the child can’t inherit the money directly and it can only be used for expenses outside of food and shelter. That’s where a special needs trust comes into play. If money goes directly to the DAC, he or she will lose the government support needed for food and shelter.
Many grandparents think they’re helping the DAC by including the DAC in their will. But it could have the opposite effect. The child will get the money, but it probably won’t be enough to live on. The DAC will have to reapply for SSI and may not get it. Many of my son’s classmates lost the government support they needed because the parents made their special needs child the beneficiary of their life insurance policy.
There’s one other program that deserves special mention. Many parents take advantage of 529 college savings plans. The idea is to shelter money from taxes that’s earmarked for education. The same general rules have been modified to help special needs students. In 2014, Congress passed the Achieving a Better Life Experience Act. The ABLE Act allows children to shelter up to $100,000, which can be used tax-free for qualified expenses, without losing their government benefits.
Parents of special needs kids have many of the same wishes and dreams as all parents. To the extent possible, we want our children to have happy, independent lives. But for that to happen, parents need to understand the programs available, so their child receives all the support he or she needs.
David Gartland was born and raised on Long Island, New York, and has lived in central New Jersey since 1987. He earned a bachelor’s degree in math from the State University of New York at Cortland and holds various professional insurance designations. Dave’s property and casualty insurance career with different companies lasted 42 years. He’s been married 36 years, and has a son with special needs. Dave has identified three areas of interest that he focuses on to enjoy retirement: exploring, learning and accomplishing. Pursuing any one of these leads to contentment. Check out Dave’s earlier articles.
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Dave, you have helped more people than you know with your column today. It is important information and needed by many. Chris
That is a big burden to shoulder, David. I don’t know how I would handle it and I thank God I haven’t had to do so.
thanks David..
we have found this all out too 😉 but I didn’t know about the ABLE Act.
set up a special needs trust in our wills last year.
One child in medical school, one child at home forever. Roll the dice..
Doug K, I learned about ABLE accounts several years ago and was excited to start saving for my daughter’s future. (She was born with spina bifida.) Since then, however, I have become less enthusiastic about these accounts after we met with a couple of financial advisors. Both advisors warned against saving a significant amount in those accounts for two reasons: First, the account’s beneficiary must also be disabled. Since our daughter is the only one disabled in our family, we couldn’t designate a family member as the beneficiary in the event our daughter dies. Second, if she were to die, there’s no legal precedent against the government claiming reimbursement for the cost of services our daughter has received over her lifetime. Her ABLE account would likely be a prime target. Our advisors’ recommendation has been to only fund the ABLE account to assist with daily living expenses. You’ll obviously want to confirm this information with your research/advisors.
Dave,
Thanks for highlighting the benefits you have used for your son. My wife and I were caregivers for her special needs brother for 3 years. Prior to that he lived with his mom but we were heavily involved with his care giving after his dad passed 15 years ago. His mom became unable to care for him because of her own medical issues as she aged. We moved to Michigan from PA 3 years ago to be closer to our kids so we brought mom and her son with us. She moved into assisted living nearby. My brother in law had multiple medical issues after we moved. He had few issues with Medicaid covering his care and the choice of physicians. The incurable issue was early onset Alzheimer’s. He passed away in April after a 90 day stay in hospice.
I set up his accounts for him after his dad passed. At first, we used his Social Security to pay a portion of the rent for the duplex he and his mom lived in. As we planned our move to Michigan, I set up an ABLE account to allow him to stay under the $2000 asset limit. After we moved, my wife and I set up our will to pay a significant sum to his new Special Needs Trust upon our passing. His mom’s assets were not sufficient to provide for him after her death as her care was consuming them at a rapid rate.
As his condition worsened, we hired caregivers to assist with his care in our home. The ABLE account was soon depleted to pay for the caregivers. Medicaid (and Medicare) does not provide for caregivers. I looked at our spend rate and knew this was going to escalate rapidly as his needs increased. He had 5 siblings who lived outside Michigan, so I developed a plan for all to contribute quarterly amounts to the Trust. I insisted on quarterly as it was hard to predict exactly what the spend rate was going to be. As we headed into 2024, we were looking at an annual spend rate of $125,000. We were still the evening caregivers and the days were paid help. He moved into a great Medicaid paid hospice the last week of 2023.
This was not the plan his parents envisioned. My mother in law is still alive at 95 and her spend rate at the facility she is at may exceed her assets. Their plan was for their son to pass first. This was not unusual for Down Syndrome children born earlier. He lived to be 55. A majority of Down Syndrome adults over 50 may develop Alzheimer’s. This was not known until recently.
Continued good health to you and your family!
David,
God bless you and your wife and your son.
David – you’ve written about your son several times. My complements to you for being the supportive father he needs at this time, and planning for the future as he ages.
Hi David. I became aware of much of what you so clearly and concisely stated when I was the agency nurse for a small group home organization in upstate New York some years ago. You shared very good information. Several of the families were very involved with their family members residing in our homes. The Special Needs Trusts they set up allowed their loved ones to have a very high quality of life, including occasional vacations accompanied by a caregiver.