Standing Together, Standing Proud
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This article is excerpted from Minoti’s book, Beyond a Parent’s Love, which is available from Amazon using the link on this page
Caring for multiple children with special needs requires complex legal and financial planning as well as a strong support system. Children with disabilities need different levels of care and families must find and navigate a tight network of advisors and advocates. Parents also must consider who will provide care after they pass.
The family clan motto gracing David and Jane Mandy’s eventual burial plot mirrors their life’s conviction: “BYDAND.” It is Scottish for, “Stand fast. Stand firm. Stand together.” David and Jane have been living those ideals for the last 50 years. They are unwavering in their love and commitment for their three children. All three are cognitively impaired and will need care and supervision for the rest of their lives.
Their deep concern for their children keeps them awake at night. They remain steadfast and strong in their beliefs.
“You have to fight for your child. You have to listen to your child,” David said. “It is important to understand that the word impossible only describes a degree of difficulty.”
In my 28 years of working with families of children with disabilities, David and Jane Mandy stand out as an exceptional couple and will always have a special place in my heart. I met David, a pediatrician, at a special needs workshop in Macomb County, Michigan in 1992. He handed me a questionnaire at the end requesting a consultation. I noticed immediately he listed three children as dependents with disabilities. Holly was then 17, Joshua 12 and Drew was 10.
I wondered how they coped. Most families struggle with one child with a disability and they had three. Over the years I developed great respect for David and Jane and learned how they refused to accept limited options, focusing on dedication, endless love and potential for their family.
None of their three children had obvious signs of cognitive impairment at birth. Holly was growing and developing well at 15 months when David noticed her head nodding one evening as she played by his feet. Jane said she had noticed as well. David was alarmed and took her to Dr. Michael Nigro, a pediatric neurologist. He confirmed Holly had infantile spasm seizure and mild cognitive impairment. While her seizures were soon controlled, David and Jane’s lives changed forever.
David was a young resident doctor and already working long hours. The months after Holly’s diagnosis in the mid-1970s were a blur of confusion and search for care. As a pediatrician, David was very aware of what Holly’s diagnoses meant and how it could impact their family. He said they just dug in and got to work.
Four years later Jane became pregnant again, and she had sophisticated genetic counseling and all appropriate medical testing. Their unborn baby son tested normal. Joshua was born with no issues and to David and Jane’s relief developed well until about age three. They realized that despite his growing and strong vocabulary, Joshua struggled with learning the alphabet. This was not normal; David and Jane were concerned. They returned to Dr. Nigro, the neurologist. He recommended they consult a psychologist.
Joshua was diagnosed as mentally challenged with a low IQ. David remembers the day vividly. He was completely crushed and broke down in sobs. He felt devastated. Jane was stoic and accepted the diagnoses calmly. As they drove home Jane’s control came crashing down. She could not hold back her gushing tears. David assured her that together, somehow, they would persevere.
Their son Drew was born three years after Joshua in 1982. Testing again raised no issues, but Drew developed seizures shortly before turning two. Other complications followed. Drew was diagnosed with severe mental disability with greater challenges than Holly and Joshua. Drew needed round-the-clock attention due to his frequent seizures and had severe developmental delays.
David and Jane’s faith and determination to hold their families together got them through the early years of discovery and confusion. They accepted the reality with grace and never wavered from their faith or trust in God. Each of their children had specific needs and challenges. Their days and nights were long and exhausting. It tested their patience and ability to cope with the stress. The Mandys formed a tight unit and continually researched and sought care and support. They became their children’s constant protectors, fought for their rights, always seeking to enhance their lives.
The Mandys often felt lonely, but were blessed to have very special people in their lives who contributed to their children’s growth. They found great comfort with their preacher, who gave them needed solace. And they turned to the schools. Dr. Larry Salaty, director of special education in their school district, helped create an enriching educational program for Holly. He also started a parent advisory council (PAC) that David and Jane remained part of for years to come.
Although Holly struggled in many areas of academic and life skills, David and Jane cherished every moment of Holly’s accomplishments and worked with her continually in her personal growth.
Holly struggled for years to learn to read. Finally, in middle school her teacher, Ruth Battles, helped her learn and opened doors for her progress. Holly’s running ability also led to a great athletic career. She was a sprinter in track at school and in the Special Olympics. Another teacher saw her potential as a distance runner and encouraged her to compete, making Special Olympics even more meaningful for her. Holly’s talent as a distance runner won her many accolades and wins. In an especially proud moment, she was named one of seven to obtain a varsity letter and was fifth in a race. Her parents were thrilled.
Joshua struggled in school as well. He had difficulty in reading and math but showed strength in many sports activities and was a Boy Scout. His sense of humor and charm always delighted his parents.
Drew was Dave and Jane’s greatest challenge. Despite several medications, his seizures were uncontrollable and he needed attention round the clock. His disability was the most severe and his care exhausting.
David and Jane accepted the reality that their children needed lifelong financial and emotional protection. They began planning for their children’s financial future shortly after our first meeting. Their planning needed to focus on a comprehensive approach that entailed financial security for the surviving family in the event either David or Jane died. Most importantly, they needed planning for their three children through special needs trusts.
We completed a detailed risk-management analysis; David was the sole breadwinner, and his death would create severe financial hardship for Jane and the children. Jane’s death would leave David helpless and caring for three children. I recommended sufficient term-life insurance for both parents until they accumulated assets. Until that time, David had not been able to start a retirement plan, and I recommended an appropriate plan for a retirement savings program.
Qualifying for government benefits, such as Social Security and Medicaid, was a key component to planning for their three children. The Mandys created revocable living trusts for themselves as well as separate stand-alone revocable special needs trust for each of their three children. The special needs trusts have the language to protect eligibility for government benefits. Revocable trusts provide flexibility to make changes if and when they are necessary.
The government benefits alone, however, were not likely to be sufficient to provide for the quality of life David and Jane wanted for their children. The special needs trusts also needed assurance of funding at David and Jane’s death.
David and Jane purchased a joint-survivor permanent life insurance and made the three special needs trusts beneficiaries of the life insurance. The tax-free nature of the insurance policy’s death proceeds is particularly important. We agreed to monitor the plans carefully and regularly as their lives changed as well as the laws changed.
Despite having cognitive impairment and somewhat limited academic skills, Holly and Joshua are very high functioning in other areas and are active and social. Holly was hired at Mount Clemens General Hospital after she completed high school, tasked with picking up and dropping off testing equipment and instruments. She continued working there many years.
Joshua, too, has held steady jobs. He worked as a custodian at a church for many years and is currently employed at a fencing company packaging, banding, foaming, and putting fences on trucks. His easy going and friendly personality wins people over easily. He speaks well and is friendly and well-liked at work. Joshua struggles with reading but is an Eagle Boy Scout and excels at cross-country skiing. He saves as much as he can and is a proud owner of a truck he bought with his own savings.
Drew is severely limited. He is dependent on his parents for all daily needs. He is nonverbal, expresses himself with signs or gestures, and wears diapers. He has a sweet disposition, can walk unaided, and attends a day program for recreation and socialization.
One of the most wonderful and special events for the Mandy family was Holly’s wedding to her true love, Peter, in 2007. Holly met Peter at work, and they began dating soon after. Their romance blossomed, but David and Jane were worried. Should they get married? Would it work? Peter did not have a disability and was a low-wage earner. He cared for Holly deeply, yet David and Jane wondered if he would always love and take care of her.
The wedding was very emotional. The family invited those who had supported them in raising their special needs children. There were many tears of joy shed as David walked Holly down the aisle. It was a shining moment.
David and Jane also helped the young couple buy a home and taught them basic finances including budgeting. David and Jane lived close enough to support them in person as well as financially. The family recently celebrated Holly and Peter’s 10-year marriage with a trip to Disney World, the family’s favorite holiday destination, with David, Jane, Joshua, and Drew.
Despite their planning, David and Jane are concerned about the future. Will their financial planning be adequate for their children? Planning for three children with disabilities and their own retirement is exasperating. David is committed to working for the rest of his life to provide a secure future for his children.
“Jane and I will live on bread and water for the rest of our lives if that is what is needed to take care of our children,” he said.
Yet financial help has also come from family. David and Jane were very relieved when both received inheritances from their parents when they passed, first from David’s father, and then from Jane’s family.
David’s younger sister Bonnie has been a steadfast supporter for David. Bonnie was born 16 years after David and has always been close to her older brother. From the start, Bonnie and her husband were very caring toward Holly, Joshua, and Drew, and worried about their futures. They generously purchased a large life insurance policy on David and Jane for the benefit of their children. Even more giving, Bonnie turned over her inheritance from their father in David’s favor. David and Jane were truly touched by the selfless gestures on Bonnie and her husband’s part. Bonnie also is named the successor trustee of David and Jane’s trust as well as the children’s special needs trusts.
The Mandy’s family planning has several complex factors, including levels of government assistance. Holly is working and managing well in her married life. Yet both Holly and Peter earn low wages. Holly is considered high functioning with a mild disability. Due to Holly’s full-time work, she no longer receives any government benefits either in monthly income (SSI or SSDI) or other Medicaid benefits such as transportation and food stamps. Joshua also functions well in many areas despite his mild cognitive impairment, and he no longer receives any government benefits.
Holly and Joshua’s wages unfortunately do not allow them to be financially independent, and they still need their trusts, funded by David and Jane upon their passing. David and Jane have amended their trusts as necessary for their children’s needs. All three children were equal beneficiaries of their parent’s estate when their plan was first set up in 1992. Since then, Holly and Joshua have continued to be employed and do not require as much care. Drew is completely dependent. David and Jane are leaving a greater percentage of their estate now for Drew’s trust.
As David and Jane approach retirement and face their own mortality, they think about their children’s future constantly.
“What will happen to my innocent children?” asked David in a quivering voice. “Will people take advantage of them? Will somebody steal their money or abuse them? Where will they live and who will take care of them?”
He believes that his God has brought them to Earth and will ultimately take care of them. David’s faith reassures him that the right people who can be trusted will surround them. Bonnie is their back up. They are concerned about a successor trustee after Bonnie. David and Jane hope David’s best friend, Ed Young, and his family may offer to help as they have supported the Mandy family for years through all challenges.
David and Jane do not give up easily. They know they will always need to be resourceful and seek counseling from professionals to revise their plans. They hope Joshua and Drew will continue living in their current home even after they are gone. They also hope Holly and Peter will move back to the family home. They realize the right caregivers are essential to their children’s safety and care. They will work with local advocacy groups such as ARC of Macomb and the county Community Mental Health and their list of providers for services to care for their children. They may also consider professional trustees such as CPAs and law firms to work with the advocacy groups.
Despite the uncertainly that looms, David and Jane make the most of enjoying their children every moment and depending on each other. David believes strongly he is following the path planned for him in his religious faith. And he has Jane to share that path.
“This is the woman who holds my hand and gets me to go where I need to go,” he said.
For David, resiliency, listening and talking to the children, and adjusting is key in keeping their family moving forward. Jane is proud of her children and said their growth sustains her.
“You have to get the children involved early on, you have to share them earlier than you may have planned,” David said. “You have to learn to let them go. You have to find a network of friends, teachers who care about your child.
“These children are handicap-able and not handicapped.”
David and Jane continue pursuing many activities and hobbies with their family. They are a dedicated Special Olympic family. David is a coach for Special Olympians in several sports, and both serve on the board for one of the area teams. They are musicians and practice weekly. David plays the bag pipes, Joshua plays the base drum, and Jane plays the snare. David and Joshua are active hikers and enjoy adventures in the Canadian Rockies. David also collects historical artifacts including Lionel trains.
David and Jane will soon celebrate 50 years of marriage, a long journey for an exceptional couple who truly represent their Scottish family motto: BYDAND. Stand fast. Stand firm. Stand together.
Insights from the Mandy family
Learn early about government benefits for a range of disabilities. The Mandy family shows planning for high-functioning or mildly disabled individuals can often be difficult. The children may be able to work but not earn enough to support themselves and yet might not qualify for government benefits. Parents need to consider all wage and potential benefits as the Mandys did for Joshua, Holly and Drew when deciding on funding their trusts.
Understand guidelines for revocable and irrevocable trusts. Revocable trusts provide the important flexibility to make changes where necessary and applicable, including changes in trustees or benefits to beneficiaries. Some states require special needs trusts to be irrevocable. Care should be taken to ensure that all contingencies are thought through before irrevocable trusts are created.
Research long-term housing options from the start. Future residences with care giving for special needs members is often the main concern for families. The Mandys have decided their own home is ideal for Joshua and Drew, and plan to work with Community Mental Health for caregiving for their sons. Housing options may include the parents’ home, licensed group homes and take many years to plan.
Ensure whoever is named a successor trustee is aware and willing to assume all responsibilities. The role of a successor trustee of a special needs trust is important, with complex requirements. This includes looking after the best interests of the person with disability and managing the trust assets. The trustee may be given the option to choose a co-trustee including a professional corporate trustee to share the responsibility.
Minoti Rajput, CFP, ChSNC, is the founder and principal wealth advisor of Secure Planning Strategies. She has been working with families with children of special needs for over 30 years and is a frequent speaker on various topics related to special needs planning. She is also the author of Beyond a Parent’s Love.