The Planning

Adults with Down Syndrome, Advocate, Aging, Auburn University, Disability, Down Syndrome, Family Challenges, Independent Living, People with Disabilities, Siblings No 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.

Abundant Life by Embry Burrus

Adults with Down Syndrome, Advocate, Aging, Auburn University, Family Challenges, Mother of an Adult with a Disability, Parents, People with Disabilities, Siblings 83 Comments »
Margaret, Embry and Mama at the Beach

Margaret, Embry and Mama at the Beach

Jane has graciously asked me to share with her readers how my family is caring for my older sister, Margaret, who has Down syndrome. It’s one of the most common questions that people ask me when I go to speak to parent groups and seminars: “What will happen to your sister when your mother dies?”

To be honest, it’s a fair question. My mother is 91 years old, so folks wonder, how could she possibly still take care of an adult child with Down syndrome? And the answer is, it’s now a group effort.

Our father died in 1983, and since then, our mother has been Margaret’s confidante,  caretaker, and as always, her lifelong advocate. Even when my father was alive, Mama was the one who took care of things; especially where Margaret was concerned. She continued to drive into her late eighties, and took care of all the household duties and bills. She drove Margaret to all of her social events, to the grocery store, to church, and even on short trips. People are always amazed when they meet her, marveling at how active, funny and engaging she is at 91 – she is truly an amazing person!

But, things have changed around their house now. Mama knew she needed to stop driving, especially at night, and the household chores were starting to overwhelm her. I called one night at around 8:30, and they were just sitting down to supper. When I asked Mama why they were eating so late, her response was, “I don’t know, I just couldn’t get it together.” I knew it was time to get her some help.

My brother and I talked, and decided that we needed to find someone who could help out on a daily basis with cooking, cleaning and driving Mama and Margaret to their activities and appointments. We were blessed to have a friend recommend someone, and now we have two wonderful ladies who share the duties. Brenda comes every morning, drives Margaret to her activities with the recreation department, and then comes back to the house where she cleans, fixes lunch, does laundry and takes Mama to the grocery store, the bank, or wherever she needs to go. Since Brenda already had a job in the evenings (taking care of another elderly person), we needed to find someone else who could work a few hours every night. Brenda knew of someone in her church that was retired and looking for a part-time job, so she recommended Marion, and she comes in Monday through Friday from 5:00 – 8:00 p.m. She makes dinner, cleans the kitchen, and takes care of anything that needs doing before they go to bed.

Mama and Margaret are still able to manage things at night, and on the weekends, as I usually go over on Sundays to spend the day with them and take care of the bills. I know there will come a time when they will need full-time, seven day a week help, but for now, our set-up works just fine.

I realize that I still haven’t answered the question of what will happen to Margaret when my mother is gone, and the truth is, we don’t have “a plan” in place. My mother and I have discussed it, but it’s difficult for her to talk about. I don’t think my mother ever considered that Margaret might outlive her. She feels responsible for Margaret, and doesn’t want my brother or me to “have to worry with it.” I have tried to assure her that this is no burden for me, and that I am honored to take care of Margaret; I only hope I can do as good a job as my mother has.

Two years ago, we set up a Special Needs trust for Margaret, so that any assets she has will be protected and not cause her to lose her government benefits. We also established guardianship so that I will become her legal guardian once my mother is no longer living.

What I hope for is that Margaret is able to continue to live in her home (which will go into the trust once my mother has passed on), and we will have wonderful people like Brenda and Marion to help out. Since I will be Margaret’s legal guardian upon my mother’s death, those decisions will be left up to me. My plan is, first and foremost, to do what’s best for Margaret, and to make sure that she continues to lead a happy and fulfilled life.

A. Embry Burrus, MCD, CCC/SLP
Associate Clinical Professor
Department of Communication Disorders
Auburn University
E-mail: burruae@auburn
Author: Mama and Margaret

Have you wondered who would take care of your family member with a disability? Do you have a plan? We welcome your suggestions and questions.

Beautiful People (Part 3): A Beautiful Friendship

Auburn University, Disability, Down Syndrome, Education, Friends, Inspiration, Special Education, Teaching, Western Carolina University 1 Comment »


During my graduate work at Auburn University, I taught a demonstration class for children with intellectual disabilities. Billy and several other children rode with me from Columbus, Georgia during the summer to attend the class with local children. During our first summer, we met Steve Hinton, who was also a member of the class.

Steve, who has Down syndrome, became Billy’s best friend. His parents were professors at Auburn who, like me, were devoted to finding the best education possible for their child. One teacher who observed the class said that he had never seen a more beautiful friendship than the one between Billy and Steve.

After we moved to Auburn Steve and Billy were together each day at their regular school. They were so close that they talked on the phone after school every day and visited with each other frequently. We went with Steve’s parents to their home at the lake where the boys played in the water and Steve tried to teach Billy to swim. They put on concerts for each other, pretending to be their favorite singers. Billy had never had a real friend before.

When I completed my work at Auburn, we moved to North Carolina where I had accepted a teaching position at Western Carolina University. We regretted leaving Steve and promised to return and to expect visits from him. Although thrilled with our new home, we were somewhat concerned about Billy’s adjustment, especially being apart from Steve. When we opened our first phone bill, it was apparent that Billy and Steve had maintained their practice of talking with each other every day after school. As amazed as we were, we realized that we hadn’t explained the difference between local and long distance phone calls. We also acknowledged our surprise and delight that Billy had managed to make the calls.

Steve spent a week with us in North Carolina and whenever I visited my mother in Georgia, Billy spent time with Steve in Auburn. It was always as if no time had elapsed since their last encounter. They were still best friends. As Steve and his family moved farther away and we became involved in our new lives, our letters and visits became rare.

When Billy and I began doing presentations at various conferences, a welcome opportunity arose. We had been invited to The University of Alabama. Since Steve and his family had moved to Tuscaloosa, they planned to meet us at the conference. Billy was so excited and looked forward to a reunion with his best friend. The reunion, however, brought sorrow to Billy and to me. Steve’s mother had warned us that Steve has Alzheimer’s disease, which appears to occur more frequently and at an earlier age in people with Down syndrome than in the general population. Although we knew that Steve’s behavior would be unpredictable, we hoped that he and Billy would retain some degree of their relationship. Billy was devastated when Steve neither recognized nor spoke to us. He could not understand, as none of us can, how a deep relationship can disappear from someone’s mind. Billy sill recalls with sadness, “Steve not know me.”

Steve has improved somewhat, and we still speak by phone from time to time. Billy, however, is still sad about his friend’s inability to relate. Even as we recall their past positive experiences, it always ends with “Steve not know me.”

Like the teacher who observed Billy and Steve, I think of their relationship as the most beautiful friendship I ever saw. Have you had close friendships like this? Have you had experience with Alzheimer’s disease? What would you say to Billy?

Beautiful People (Part 2)

Adults with Down Syndrome, Aging, Auburn University, Family Challenges, People with Disabilities 1 Comment »

Our guest blogger is Embry Burrus, Assistant Clinical Professor, Department of Communication Disorders, Auburn University, and author of “Mama and Margaret”.

My name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know.

In fact, she is one of my most favorite people to hang out with—she loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it!

She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is.

She is the best sister anyone could hope for; oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that Down syndrome does not define her at all.

People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 91 year old mother. When I’ve spoken to groups and told people how old my mother is, they frequently ask, “Does your mother still take care of your sister?” to which my response is, “No, they take care of each other.”

If you’d like to meet both of them and learn more about our family, please visit my website at: www.aeburrus.com.

Looking at this picture, I see innocence, openness, acceptance, wonderment.
I see three beautiful people. What do you see?

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