The Saddest Post in the Whole Wide World

Adults with Down Syndrome, Aging, Community Participation, Courage, Disability, Down Syndrome, Education, Employment, Family, Friends, Inclusion, Inspiration, People with Disabilities, Special Education, Teaching, Western Carolina University 53 Comments »

Billy Schulz, 56. We are going to miss you.

William Robert Schulz

Kingsport — William Robert “Billy” Schulz, 56, born January 28, 1956, died peacefully on September 2, 2012, after a period of declining health.

Billy was a beloved and influential member of his family, and an ambassador of goodness wherever he went. His cheerfulness and optimism contributed to the communities in which he worked and worshipped.

In April, Billy received his ten-year pin for his work as a bagger at Food City, where he worked at Eastman Road and Colonial Heights branches. He was an active member of First Broad Street United Methodist Church, where he returned their warm welcome to Kingsport by welcoming church members frequently as an usher. He belonged to TeamMates and loved singing at One Thing.

Prior to moving to Kingsport in 2001, Billy worked in Cullowhee, NC, at Western Carolina University’s Hunter Library for 21 years as a security book handler. He was a member of Sylva’s First United Methodist Church, where he was a regular usher for over two decades. Billy graduated from Cullowhee High School in 1977.

Born with Down Syndrome, Billy’s special needs directed the career of his mother, Jane B. Schulz. Billy and Jane inspired thousands of people during their teamwork together, modeling for all how much can be accomplished in life with determination, humor, love, and courage. Jane wrote her memoir, “Grown Man Now,” about her life with Billy, who has been a devoted and generous caretaker to his mother in these later years.

From the Office of the Chancellor, Western Carolina University:
“In recognition of Mr. Schulz’s achievements, service and cultural contributions to the betterment of society, he was scheduled to receive an honorary degree, a Doctor of Humane Letters, from Western Carolina University alongside his mother, Dr. Jane B. Schulz. The award honors Mr. Schulz for not only developing skills, talents and creativity beyond his expectations but also courageously sharing his experiences in presentations at community, university, regional and national events to help dispel negative stereotypes of people who have disabilities and encourage all to seek their full potential. The honor will be bestowed posthumously during WCU’s fall commencement exercises on Dec. 15.”

A music, television and movie buff, Billy created an impressive collection of recordings, and enjoyed discussing these topics and telling jokes. He was a complex and spiritual person; his love and concern for others were boundless. His deep, abiding, and long-lasting relationships with others were inspirational and far-reaching. His loss is keenly felt by Billy’s communities and family. Surviving him are his mother; two brothers, John and Tom Schulz, and his sister Mary de Wit; their spouses, Dekie, Sheila, and Jos; Billy’s nieces, Carrie Schulz and Mary Geitner; and his nephews, Paul (Edna), John Robert (Christine), and Isaac Schulz; and Daniel and Warren de Wit.

A memorial service for Billy will be held at First Broad Street UMC of Kingsport on Saturday, September 8, at 3:00 p.m. with a reception following. Memorial contributions may be made to: The Jane Schulz Scholarship Fund / Western Carolina University / 401 Robinson Admin. Bldg. / Cullowhee, NC 28723; or to the Billy Schulz Memorial Prayer Garden Fund at First Broad Street UMC / 100 E. Church Circle / Kingsport TN 37660.

Life Expectancy

Adults with Down Syndrome, Aging, Down Syndrome, Family Challenges, Mother of an Adult with a Disability 11 Comments »

I like the TV show Glee, but I missed the season finale. Tom thought I should see it, so I found it and watched it. And watched it again.

We knew that Sue, the irascible coach (Jane Lynch), had a sister who had Down syndrome. In this episode, the sister had died and Sue was angry and bereft. She explained her feelings:

“Everyone told me that people with Down syndrome don’t live past 30. But my sister lived to 35, then to 40, then 50. I thought that after this, we could grow old together. She lived a life with no enemies and no regrets; why is it her time and not mine? How come I’m the one still standing here?”

It has been a common assumption that the life expectancy for those with Down syndrome is short. But as the life expectancy for the general population has increased, so has that of persons with Down syndrome. One reference stated that the average life expectancy of individuals with Down syndrome has increased from 9 years in 1929 to 12-15 years in 1947 and 18 years in 1961. The current projection is that 44% will survive to the age of 60 years and 13% to 68 years.

A graph showing increasing longevity for people with Down Syndrome

Increasing Longevity: People with Down Syndrome

The coach said, “I don’t know how to deal with her death. For now I’m just going to miss her.”

As for me, I don’t know how to deal with these projections. Billy is in his 50s and I am in my 80s. It’s a toss up to see who will go first. So like the coach, I don’t know how to deal with it. For now I’m just going to enjoy him.

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.

Fill Out The Attached Form . . .

Adults with Down Syndrome, Advocate, Aging, Down Syndrome, Family Challenges, Mother of an Adult with a Disability, People with Disabilities 8 Comments »

Rather than writing my intended blog, I have spent the weekend trying to follow directions. I have been fortunate to keep my son Billy as a dependent on my health plan even after my retirement. A couple of weeks ago I received papers from the insurance company  to submit to maintain this coverage. Since the due date was stated as October 15 I set the material aside. Friday (September 4) I received another set stating FINAL NOTICE (never a good sign). But now I understand why so much time has been allowed.

An important part of the documentation required is the completed Incapacitated Minor form signed by our physician. Since I did not have that form I searched until I found a link where it could be downloaded. The URL was clearly printed with the usual assemblage of characters followed by a space and CoverRequestedChild.pdf, with the entire URL underlined. I tried to access the form, alternately typing it with the space, without the space, with the underline, and without the underline. I checked and double checked, always looking for my customary typing errors, always going to a non-existing site notification. At last I called the help number listed. This is where the fun began.

I was delighted to receive a courteous, encouraging female voice, eager to answer any questions I might have.

“I am unable to access the CoverRequestChild.pdf.”

“Did you enter the URL listed?”

“Yes I did.”

“And what did you see?”

“The indication that there was no such page.”

“I don’t understand.”

At this point, I asked if I should insert the space or the underline and she informed me that she would need to ask her supervisor and would I please hold. I held. Some time later she returned to the phone, stating “The space should be an underscore and there is no underline. You know, a lot of people have asked about that.”

While I had this friendly person I decided to ask a couple of other questions.  I told her that I have a letter from the insurance company stating “William will be continued as a dependent on your Family Type certificate until he marries or ceases to be incapacitated (capable of earning a living).” I wondered if that would serve the purpose.

“Please hold while I ask my supervisor.” I held. “No, that is no longer acceptable.”

Another question: “I have a letter from our physician dated 2007 stating in part “William has Down syndrome, a condition present at birth. This is a lifelong condition which will render him unable to support himself.”

“Please hold while I ask my supervisor.” I held. “No, that is not recent enough.”

Actually I do have another question: Is it possible that someone thought Billy would no longer have Down syndrome after three years?

Now I will get the physician’s affidavit, fill out the forms, and try to get all of it in by October 15. I’m glad I have that much time to complete the process.

Does anyone else have this much trouble filling out forms?

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 82 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.
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