Most adult children do not live with their parents. Many adult children with special needs do. K. Charlie Lakin of the University of Minnesota estimates that there are over 750,000 people with intellectual and developmental disabilities living in a household where one parent is over 65. What happens to those children when their elderly parents are no longer able to care for them? What happens to elderly parents whose children are not able to care for them? This article focuses on the story of one family in which the life-long caregiver of a person with disabilities becomes disabled and needs help herself.
CONSIDER THE CASE OF EMMA AND HER DAUGHTER, CLARICE
Emma had one daughter, Clarice, who was born with developmental disabilities, and became difficult to manage due to emotional outbursts as she grew older. During her early years, Emma and her husband worked hard with Clarice to help overcome her emotional issues, achieving some success. Eventually, Clarice was comfortable with her parents, in her home. Efforts to bring in others to provide care for Clarice when her parents were away proved futile, so wherever Emma and her husband went, Clarice went, too.
When Clarice was 12, her father died, leaving the entire burden of raising Clarice to Emma. Emma went to work, and set up a system of trusted caregivers to watch over Clarice during those difficult years. Clarice and Emma continued to live together in Emma's home until Emma was in her 80's. They had an extremely close and trusting relationship, and only Emma could help Clarice through times of stress. As Emma became less able to care for Clarice, she was able to obtain Medicaid-covered assistance to help her care for Clarice at home. With Emma's help, Clarice came to accept caregiver assistance.
At age 82, Emma noticed that she was forgetting appointments. She visited with her physician, who determined that she had a form of dementia. Emma was devastated. Her concern was not for herself, but for Clarice, who depended upon her for everything. As Emma's dementia worsened, Clarice began caring for her mother to the extent that she could. Emma had limited resources, and as her care needs increased, her assets began to diminish. She began to reach out for help, very concerned that her daughter would not survive without her.
Fortunately, family members became involved and sought qualified legal counsel. It was determined that Emma would soon need long term care placement in a skilled nursing home. It was also determined that, without Emma, Clarice, who was now in her early 60's, would need that level of care as well.
The dilemma was that no facility was willing to accept Clarice due to her emotional instability and limited assets. Given Clarice's comparatively young age, a facility could expect to care for her many years after Emma had passed away, and without assets to pay for a private room and extra care, the facility might find it difficult to meet her needs.
The solution was a special needs trust for Clarice. Because gifts to a special needs trust for a disabled child are not treated as a Medicaid disqualifying "divestment" of the parent, Emma was able to transfer her assets to a special needs trust that would provide for Clarice's extra expenses, and as a result, could qualify for Medicaid coverage herself. Likewise, the special needs trust did not 'count' as Clarice's asset, so that Clarice's Medicaid and income benefits were not affected. Both Emma and Clarice could qualify to have Medicaid cover their care, while preserving resources to pay for Clarice's other expenses. Knowing that Clarice had a source of funds for her additional needs, the nursing home agreed to take both Emma and Clarice and place them in the same room. Because both were qualified for Medicaid, both could share a room. During her remaining lifetime, Emma could be with her daughter and help her adjust to life in her new home, and …