BY AMY BOULWARE
Knowing your family will be safe and secure, even when you may not be around to care for them, is a concern nearly every parent faces—a concern only amplified for parents of children with special needs. But it’s not an issue without an answer. Elder law— which specializes in special needs trusts, estate planning, incapacity procedures and more — is a powerful tool that can not only ensure your peace of mind now but secure the well-being of your loved ones down the road.
In my 22 years of experience as a social worker, I have seen firsthand how elder law agreements can bring the certainty families with children with disabilities cave in the face of the very real reality of a parent’s passing. No clearer example stands out in my mind than a 92-year-old, iron-willed mother named Sara whose care for her 64-year-old daughter Nancy — who had been born with developmental disabilities — consumed her thoughts from beginning to end.
A Mother’s Concern
“My Amy, come here I need to talk to you,” said Sara as I had sat down on the edge of her hospital bed only days after she had been admitted to hospice care, following a three-year decline in health that all started with a fall and a broken shoulder.
Sara and I had known each other for more than 20 years—beyond advocating for Sara and her family as her social worker, she had become something of a personal hero. While never looming large in stature, she was easily one of the strongest women I have ever known. When her daughter Nancy was born with special needs, she and her husband Walt had been advised by medical professionals to house her in an institution, move on and essentially forget they ever had her. After all, they could have more children and caring for this one would be too much of a burden.
But Sara and Walt refused to do that. After firing their doctor, the two became advocates for Nancy long before there were support groups or programs to navigate them through the maze of parenting a child with special needs. Their love for Nancy was clear and fueled their drive to secure a life for Nancy that was not limited by her disabilities, finding special school programs that taught her how to read, write, swim and more — even training her for the workplace.
After educating her own employer on the benefits of hiring people with disabilities, Sara found a place for Nancy in her office where she remained long after Sara retired. Living together side-byside, the two shared life and love for 64 years — every one of which left Sara more and more anxious at the prospect of how Nancy would manage when Sara was no longer there to guide her.
Elder Law in Action
As Sara’s geriatric social worker, the two of us shared many conversations about her concerns for Nancy. Sara had been living frugally for years, clipping coupons, shopping sales and spending as little as she could on herself in an effort to save everything for Nancy’s benefit.
But with Sara’s fall, her worries heightened, and it became clear it was time to make some concrete plans. This is when we first approached an elder law attorney who had experience working with people with disabilities. Sara was educated on different types of trusts, incapacity documents and wills, giving her the know-how she needed to secure a special needs trust for Nancy that would ensure she lived comfortably, as well as make the most of Sara’s coupon clipping. Under the attorney’s advisement, a letter of intent was also crafted that would clearly direct and monitor those caring for Nancy long after Sara was gone.
This process was not a quick one, but it was one that gave Sara the peace of mind she needed and put in place the safeguards Nancy required for her future. With the documents in place, we had finished one critical piece of the puzzle, but the question still remained of where Nancy would live without her mom.
In light of Sara’s decreased independence, the two moved into an independent senior living apartment closer to family. While a hard decision— involving moving out of their home, Nancy retiring from her job and completely downsizing— the move yielded a more independent Nancy. As Sara become less capable, Nancy learned to do laundry, help her mom keep to the schedule for meals, attend activities and make friends in the new community. It was truly a move for the better, strengthened by the legal certainly that came with Nancy’s special needs trust, Sara’s newly-made will and additional legal provisions — provisions that played a crucial in the family’s ultimate peace.
A Mother’s Comfort
It was this peace that I felt when arriving at Nancy and Sara’s residence and hearing the words: “Amy, she isn’t going to make it this time. I think she is dying.”
Sitting once again on the edge of her bed, Sara whispered to me: “Have we done everything on the list? Is Nancy going to be okay?” The answer thankfully was: “Yes, Sara we have done absolutely everything we could have done to prepare for Nancy. She is thriving here, we have taken care of all of the legal documents, the special needs trust is in place, her family is here for her, and she has me. You could not have done more.”
Those were the last coherent words we shared before Sara slipped into a coma — an exchange that left us all grateful that the answer to her questions had been a resounding “yes.”
Elder Law & Social Work Join Forces
Sara and Nancy’s story is one that is becoming ever more commonplace and a demonstration of how families of children with special needs can benefit from a unique, informed partnership of social work with elder law. Now working as a part of the very same elder law team that once helped Sara a number of years ago and continues to serve Nancy’s family, I can still say with confidence that the union of legal advice with a social worker’s care coordination and personal advocacy can provide families with the cohesive approach they need to ensure their children are not only cared for now but in the future. It’s an approach that is just as much about cultivating healthy, secure relationships as it is about putting in place legal documentation that eliminates present and future worries.•
ABOUT THE AUTHOR:
As the Elder Care Planning Manager for Chambliss Law Firm in Chattanooga, Tennessee, Amy works to keep her clients independent and active. She assists with elder care issues, special needs planning, preretirement education, and Medicare planning. Amy has more than 25 years in social work experience and is a Tennessee Licensed Advance Practice Social Worker (LAP MSW). Organizations across the country reach out to Amy to speak on issues of aging and disability. She has served on the Tennessee Governor’s Commission on Aging, is the former President of the State of Tennessee Health Care Social Work Association, and was named 2015 Social Worker of the Year by the Southeast Tennessee Chapter of the National Association of Social Workers. Amy is the coauthor of The Senior Survival Guide: An Information System Made Simple.