The Planning

Adults with Down Syndrome, Advocate, Aging, Auburn University, Disability, Down Syndrome, Family Challenges, Independent Living, People with Disabilities, Siblings Add comments

A few weeks ago Embry Burrus wrote about The Abundant Life that her sister Margaret and their mother experience. She mentioned a Special Needs Trust Fund, which prompted a question from a follower of our blog. It occurred to me that many people are not aware of the planning that goes into arranging for the future of persons with disabilities. Embry wrote the following article for an issue of the newsletter of the National Down Syndrome Congress and has graciously given me permission to post it here. Thank you, Embry, for your insight and experience.

“What will happen to your sister when your mother dies?” I guess that people began asking me this about 10 years ago, when my mother was getting close to 80. Now that she’s 90, it seems to be the question I get asked when I speak to parent groups around the country. Funny thing is, I didn’t have a clue how to answer that question ten years ago, and it’s only because our family has now gone through “the planning” for my sister that I am able to even entertain the question now. My older sister, Margaret is now 51, and yes, our mother is 90, and yes, they still live together!

“You mean your mother still takes care of your sister?” That’s usually the second question I hear. My reply is, “Well, they take care of each other.” And they did, for a very long time. It’s only been in the last 7 months that my brother and I started looking for someone to help out. And now, we have a sweet lady who comes in 5 days a week to help out with laundry, cooking, cleaning and being a chauffeur to Margaret. Now that Mama doesn’t drive anymore, Brenda drives Margaret to all of her day programs for adults with disabilities, takes them to the grocery store, doctors appointments, or anywhere else they need to go.

I never thought that my mother and Margaret would need help, and I don’t think my mother did, either. To be honest, I don’t think my mother ever considered that Margaret would outlive her – Margaret was born in 1958, with Down syndrome – who would have thought she would still be alive when my mother was 90? But, here we are, and now plans must be made.

It all started when my mother decided that she wanted to leave the house they live in to Margaret, along with her share of the inheritance. She contacted her lawyer and asked him if he could re-write her Will to include these changes. So, my mother, brother and I went to meet with my mother’s financial adviser who then suggested we meet with a trust lawyer. As we sat around the table with the adviser, the lawyer and the trust officer, we learned very quickly that we knew nothing about this whole process.

Our first clue was when one of them spoke up and asked, “Who is your sister’s guardian?” Jake and I looked at each other, and then at mama, who was speechless, and in more of a question than an answer said, “Our mother?” He then replied, “Oh, so you’ve already set up the guardianship?” Dumbfounded, we stared at each other. “Isn’t our mother her legal guardian? She’s her mother.”

“Not in the eyes of the law she’s not. Your sister is past the age of majority and your mother would have to be appointed her guardian.” (These laws may differ among states, so anyone looking into this would need to determine what their state law is regarding guardianship).

So began the lengthy process of establishing guardianship, changing my mother’s will, and setting up a trust (to include the house and other assets) for Margaret. The first step involved my mother’s lawyer petitioning the court in order to establish that Margaret was in fact disabled. About a week later, a police officer came to my mother’s house with a court order for Margaret to be evaluated by a physician who could write a statement describing why Margaret is disabled. During this time, the court also sent one of its officers to interview my mother’s two sisters regarding Margaret’s disability. According to my mother’s lawyer, they do this so that a family member can’t take advantage of someone (or steal their assets) by just deciding to be their guardian. There has to be at least two other people who will bear witness that this person is disabled and needs a guardian.

Once that was completed, we had a court date with the judge of the probate court; Margaret, my mother, her lawyer, my brother and I went before the judge whose task was  to establish guardianship. There was also a court-appointed lawyer present who took Margaret into another room by herself and asked her some questions (I’m assuming just to verify that she was in need of a guardian). The judge asked Margaret and my mother some questions, and the entire process took about 20 minutes. We were then given the guardianship papers, which establish that my mother is now Margaret’s legal guardian (upon my mother’s death, I will be my sister’s legal guardian, although this will involve additional paperwork), and we were informed that we have to submit a report about Margaret’s well being to the probate court on a yearly basis.

Well, we thought everything was taken care of until just a couple of years ago when Margaret, very unexpectedly, received a large sum of money from one of my mother’s relatives. Wow, what a blessing! But, this threw a kink into the works because this money was in a trust, and it was in Margaret’s name. We wanted to make sure that Margaret would have this money for the duration of her life, and at the same time, not lose her government benefits.

I had heard people talk about “Special Needs Trusts,” but didn’t really know anything about them, or how to get started. I contacted the trust lawyer who was very knowledgeable, and she took care of re-writing my mother’s will (again) to include all the important language. As it turns out, many people don’t have a special needs trust due to the fact that they just don’t know they exist. In addition, it is a fairly expensive process to set up, and if there isn’t a large enough sum of money to be protected, it isn’t really worth the time, money and effort. But, in our situation, we felt like it was warranted. I can’t express how much peace of mind this gives me and my family. We know that Margaret will be taken care of, and her assets, along with her government benefits, will be protected. It’s especially comforting to me, as I will be the person taking care of my sister once my mother is gone. I can only hope that I will be the guardian, confidante and lifelong advocate my mother has been for 51 years.

A. Embry Burrus

Auburn, Alabama

Embry is an Associate Clinical Professor in speech pathology at Auburn University. She is also the author of Mama and Margaret, a memoir about her older sister with Down syndrome.

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