Insights from a Special Needs Trust Representative

Dana Zimbleman of Colorado used a special needs trust through Alabama Family Trust to care for her mother, Iva Posey, here in Alabama.  Dana has graciously provided Alabama Family Trust with the following summary of her experience to share with others who have elderly loved ones.

The Long Yet Fast Decline in Health

(also known as when it rains, it pours) 
My mother’s decline was a long, gradual process, but the critical crisis came very rapidly. For probably fifteen years beforehand, Mother had been a diabetic and had high blood pressure but did not follow her doctor’s recommendations. She was generally healthy with no complications from these ailments, but she did not watch her weight and only took diabetic and blood pressure medicines sporadically. She always talked about “getting healthy” but didn’t follow through. A few years before both my parents became seriously ill, I noted some cognitive decline in both and urged them to move out to Colorado to live near me. Being proud people, they wanted to maintain their independence and stay in Alabama.
To make the situation worse, right before Mother’s stroke, my father appeared to be in the early stages of dementia and was unable to assess the critical nature of her condition. Had he been in full possession of his faculties, she might have received medical treatment in time to avoid the paralysis. She had fallen several times in the days before the stroke. As far as we were able to tell, on the last occasion, she lay in the floor for hours before he sought help from other family members. Sadly, it never occurred to him to call 911. He just kept trying to lift her himself but could not. He felt so sad and guilty about it, and it was heartbreaking to watch him decline as well. He was re-diagnosed with lung cancer six weeks after our mother’s stroke and died at the end of July of 2013. So basically, during the spring and summer of 2013, my sister and I were dealing with two seriously ill parents at the same time.
Mother had a stroke in April of 2013 which was followed by about five weeks in the hospital and in a rehab facility. Unfortunately, my mother was unable to regain use of her left arm or left leg and never walked again. She could not get out of bed or go to the toilet without assistance. We brought her home for about six weeks, but eventually, Mother had to move to skilled nursing facility permanently. In the early years there, she was in her wheelchair most of the day and was able to interact with other residents. By 2018, she was mostly bedbound. She passed away in May of 2020 at the age of 82.
For the first few months after our mother’s stroke, we were in denial, trying to manage a situation that was untenable.
The spring and summer of 2013 were very difficult for both my sister and me. Although our parents had a will, they had not done any estate planning beyond that, so we were both aware that if Mother needed nursing home care permanently, we would not receive any inheritance. We consulted with a couple of attorneys, who told us about Medicaid’s five-year lookback period, so we understood that moving her to the nursing home meant we would forfeit our parents’ assets to the state of Alabama. They had a small farm (50ish acres) and about $50,000 in savings. My father also had a small life insurance policy. Of course, our parents wanted their assets to pass to us when they died.
After Dad died, it became painfully obvious that Mother would have to move into the nursing home permanently.
My sister, Barbara Isbell, lived down the road from our parents and tried to care for Mother in our parents’ home after rehab. My sister called our father her “helper,” but really, he was weak and in no condition to do much. My sister could not care for Mother 24/7 without exhausting herself and compromising her own quality of life.
I was flying back and forth between Denver and Birmingham just about every week that spring and summer to give my sister a break and take Dad to his chemo treatments. It was exhausting, and I was not sure how I was going to continue doing it when I had to go back to work in August since I am a community-college professor and was off for the summer. To keep Mother out of the nursing home, I would have been forced to quit my job, and my husband and I would have been required to move to Alabama to help my sister care for Mother.
As agonizing as the situation was, I came to realize that we just were not going to be able to inherit the farm. If we wanted to keep any part of it, we would have to buy it ourselves. Being family members gave us no special entitlement even to a discount. Medicaid expected every penny.

Internet Search Pays Off

I started searching the internet for Birmingham attorneys specializing in elder law in late 2013. Because I was using my parents’ savings and the proceeds from Dad’s life insurance to pay Mother’s monthly nursing home bill out of pocket (about $6,000 per month!) before she had the trust, I was really worried about doing something against Medicaid’s rules and being held financially responsible for a mistake. I was my parents’ power of attorney, so I wanted to make sure that everything I did was appropriate and legal.  The elder law attorney and his paralegal helped us set up the first-party special needs trust and recommended Alabama Family Trust to administer the trust.

How the Special Needs Trust Enhanced Our Mother’s Life

The most important thing was the private room at the nursing home. Mother initially had a roommate. Since Mother was still grieving my father’s death, we thought it might be better for her to have someone to talk to. Unfortunately, the lady she shared a room with went to bed at 7 p.m. and complained that Mother’s television kept her awake. Getting Mother her own room became a top priority, and the trust made that possible without extra costs to us.

Of course, I also used the funds to buy Mother clothes. I could buy her new things every few months. Having new clothes so often lifted her spirits. She felt like the fashion model of nursing home! The first few months, she would say, “You shouldn’t spend so much money on me!” But when I would remind her that I bought them with her money, she felt proud and a little more independent. Also, I could buy all her toothpaste, face and body wash, and other personal hygiene items. The trust also paid for her to go to the nursing home beauty shop a couple of times each week. This picture was made right after a beauty shop visit.
In addition, Mother enjoyed phone and cable service courtesy of the trust. We switched out the landline for an iPhone a couple of years ago. She couldn’t use the iPhone without help, but I got to FaceTime with her about once a week when my sister would go visit and call me from Mother’s phone. Mother’s iPhone was even nicer and newer than mine!
Another benefit of the trust was being able to seek professional assistance when I needed it. Even after the trust was set up, I needed legal advice sometimes on dealing with her property and medical care. Had the trust not been available, this cost would have been hundreds of dollars out of my pocket.
The trust offered me even more peace of mind when I retained a care management firm in Birmingham. Mother had her own private nurse and social worker who checked on her every few weeks. Mother really loved Linda Bottoms, shown here. While Mother was in a great facility, it made me feel better to have someone from an outside agency to be her advocate, especially since I was 1,300 miles away. The care managment staff attended care plan meetings with the nursing home staff when I was unable to be there.
Finally, Mother’s trust money enabled me to travel to Alabama to manage her care, which was a great financial relief to my husband and me. Because I live so far away, each care visit to Alabama cost between $1,800 – $2,000 just for airfare, lodging, rental cars, etc. Mother’s trust reimbursed us for my plane tickets, a place to stay, and mileage. Mother was hospitalized about four times in the seven years she lived in the nursing home, anywhere from four to eight days at a time. Plus, I needed to travel to Alabama about every three months, when I had time off from work, to conduct her business and meet with her caregivers. The trust paid for all those visits because she needed someone to speak to doctors and care staff on her behalf.

Medicaid Rules were confusing, hard to follow,  and exasperating!

The unfairness of all of it still upsets me. Not only was I required to sell my parents’ farm and relinquish their assets—what would have been my inheritance–but I had to ensure the assets were sold at “fair market value” as determined by Alabama Medicaid and the Blount County Revenue Commissioner’s office.
For middle-class families who have modest savings, it is frustrating to know that some people have to surrender tens of thousands of dollars and real estate proceeds to nursing homes and Alabama Medicaid while other people with no assets receive Medicaid nursing home care without any investment whatsoever. My parents were frugal all their lives, never taking a vacation. They never spent lavishly on themselves. In contrast, some of my other relatives bought new cars every few years and took expensive vacations. They spent their money up front, then had no money to pay any portion of their nursing home costs.

If I had followed Medicaid’s spend-down requirement, Mother would have received no extra benefits at the nursing home even though she had actually invested in her care.

Between private pay and Medicaid, my mother was in a nursing home for almost seven years.  She was in the facility for several months before she qualified for Medicaid and the trust was approved.
Our parents had a somewhat secure financial situation with my sister and me paying their bills from their own funds. However, our mother’s money would not have lasted long had I continued to write a check for $6,000 per month for her room and board at the nursing home. At those prices, I would have depleted my parents’ entire life savings in about three years. After the trust was approved, Medicaid paid her room and board. Her Social Security also went to the nursing home. But I was able to use the proceeds from her estate on her quality of life. She had a nice nest egg for herself.
People like my mother face a double bind. They have some assets to pay for their care. However, the prices for private pay services are high because nursing homes need to make a little profit and compensate for indigent residents with no assets. There is no way ordinary people can make these out-of-pocket payments indefinitely. Even long-term care insurance is inadequate.
Even though my mother was paying $6,000 per month before her trust was finalized, I could plainly see that she was not receiving $6,000 in care and services. This is not to criticize the nursing home, but just note how the system works. If a person is wealthy, he or she can pay out of pocket. If a person is poor, Medicaid kicks in immediately. It is those in the middle who struggle the most. I looked it up once and realized that a month in the nursing home costs about the same as staying at the Ritz Carlton in Atlanta for 30 days!
I do not know what the answer to this problem is. All elderly people must be cared for whether they have assets or not.

Thankfully, the trust paid for a better quality of care for Mother than she would have had if we had gone through the Medicaid spend-down process.

Back to Medicaid issues, I made an offer to buy my parents’ house and the surrounding acre of land, but Medicaid declined to let me purchase at the price I offered. After about a year of haggling, I managed to get the revenue commissioner to decrease the value of the property to an amount that was more reasonable, so my uncle and I could purchase my parents’ old house and a remaining acre and not get in trouble with Medicaid. My uncle bought about 20 more acres of the farm, my sister and brother-in-law bought seven acres, and private individuals bought the rest. Other assets had to be sold correctly as well.
And my parents’ old land deeds? So funny! They were so old they referenced landmarks like “the big rock by the ridge.” I had to have the entire property re-surveyed to bring the documents into the twenty-first century. Medicaid had placed liens on the property when Mother applied for coverage, so it was on me to make sure its demands were satisfied.
At one point, I was poring over Kelley Blue Book to make sure that I sold my father’s old pickup truck for the precise amount Medicaid expected. I could have seriously compromised Mother’s ability to qualify for Medicaid if I made an error.
Working with Medicaid became much easier once I had retained an attorney and the trust application process was moving forward.
In fairness, the Medicaid staff I worked with were nice and professional, but I was careful to be very nice to them in return.

I wish I had known about special needs trusts earlier.

And a whole lot of other issues related to estate planning and leaving a legacy to family members. My family’s situation is probably a cautionary tale to others about what happens if you are middle class and do not plan adequately for the possibility that you may end up in custodial care during your final years.
Now that I have learned the hard way, my husband and I are certainly much better equipped to handle our own estate and long-term care plans. I will say that my experience made me extremely interested in elder care law. If I were younger, I would consider going to law school to focus on elder law.

As bad as our situation was, I am so happy that I got good legal advice and was able to use Mother’s money for her rather than impoverish her completely to receive basic Medicaid-level nursing home care.

Our parents should have planned more carefully.

They had wills and had arranged their funerals, which was a great relief to us. Yet they tried to hang on to their assets for too long without ensuring their final wishes could be granted. They did not mean to leave my sister and me without an inheritance. On the other hand, they were too proud to relinquish control to us.
Sadly, their worst fears were ultimately realized; other people outside the family mandated how their life savings and assets would be used. Certainly, my parents were independent people and wanted to pay their way. The idea of my mother’s being a ward of the state would have been difficult for them to accept.

On the bright side, Mother was able to live with more comfort and dignity than she would have if I had not learned of the trust program at Alabama Family Trust.


Advice to Others with Elderly Loved Ones and to Elderly Folks

Children should find a diplomatic way to broach these matters with their aging parents. Parents are worried about losing their autonomy and control. Children worry that their parents will think they are greedy. I make a point now to tell people who are getting older that they should make provisions for themselves and their loved ones before it is too late.
Everyone should obtain legal advice about their estates. Rules are complex and constantly changing. My parents thought that a will would be sufficient. In a fair world, it might have been. But all bets are off when a middle-class person is confined to a nursing home for the last five to ten years of life. I just added up the cost of seven years (84 months) of nursing home care at $6,000 per month, the approximate time Mother was there. That total is $504,000. No person of modest means can afford such enormous costs.
It’s better to hire a legal professional who understands the laws and can help families make use of their own assets through trusts like those Alabama Family Trust offers; the money for the attorney is well spent in the long run.

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