You are reading The Voice, the e-mail newsletter of The Special Needs Alliance. This installment is a very moving, personal and true story from Special Needs Alliance member Barbara A. Isenhour of Seattle, Washington. She has practiced law for over 33 years, focusing on the legal issues facing the elderly and disabled persons of all ages. Barbara was selected as one of the city’s best attorneys in Seattle Magazine for three years and has been selected as a “Super Lawyer” in Law and Politics Magazine for the past five years.
Today my client Elsa called me to tell me she has been diagnosed with cancer and probably has less than six months to live. I have represented Elsa for several years in her capacity as the guardian for her son, Carl. Elsa is now 88 and Carl is almost 60. He lives in a group home with other adult men with special needs but has regular contact with his mother.
Elsa was very matter-of-fact about her illness but wanted me to review her estate plan to be sure it was in order. Elsa has four children and her Will leaves her estate in equal shares to each of them. Carl’s share will be distributed to a special needs trust for his benefit to preserve his Medicaid benefits that pay for his group home.
“My biggest concern,” Elsa confides in me, “is whether I am leaving enough money to provide for Carl after my death. Until now I have not had to spend much money to supplement the care he receives from Medicaid and Social Security, so I think the money I am leaving for him will be enough.”
Elsa is struggling with one of the biggest worries facing parents with a special needs child. Whether the child is six or sixty there is always a worry about what will happen when parents are not longer there to provide care, supervision, security and financial support.
Although Carl’s needs have been modest until now, I reminded Elsa that she spends a great deal of time every year monitoring Carl’s care and government benefits. Elsa has always been a warrior whenever Carl’s benefits are threatened. When he lost jobs in the past through supported work programs, she worked with the employer to see if the problems could be resolved. If not, she immediately went back to the state vocational job program to be sure they tried to find Carl another job. If Carl’s group home was not providing appropriate care, Elsa spent hours problem solving. If the residential care did not meet her standards, she spent even more hours looking for a more suitable home. If Carl’s case manager at the Department of Developmental Disabilities was changed, Elsa made a point to meet the new person and get that person up-to-speed on Carl’s needs and her expectations. And I can count on Elsa calling my office within days of the end of her guardianship accounting period to ask when she can expect a draft of her guardianship report from my office.
I pointed out to Elsa that one reason Carl’s expenses have been modest until now is because she had provided so much support for him at no cost. I asked Elsa, “if you are no longer able to provide all of the support you currently provide to Carl, will your other children step into your shoes and provide the advocacy that you provide now?” The answer to that question is a quick, “No.” The children are not in the area and are too busy with their jobs to help for the indefinite future.
We then discussed the estimated cost to hire a good case manager to put in the hours Elsa does to monitor Carl’s employment issues, his residential care, his government benefits and his health care issues for the rest of his life. Suddenly the money Elsa was planning to leave for Carl does not seem to be adequate to meet his needs.
Elsa is going to go over projected expenses in more detail, talk to her children and then call me back with a final decision about how much she wants to leave for Carl. No matter what that final number is, I am sure Elsa will have greater peace of mind knowing that she has taken into account what it will cost to replace her tireless commitment to Carl’s well being.
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