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.

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.

On April 9  Billy, Mary and I spent a delightful afternoon with a group called The Pure in Heart,  at Longs Chapel United Methodist Church in Lake Junaluska N.C. This long standing church/community group is led by Jackie Spencer, a former student and dear friend of mine.

Billy Schulz, Jane Schulz, Fred Spencer, Jackie Spencer reunite for the Pure in Heart

Jackie describes Pure in Heart as  “a group of adults who share Acts 2:42 dinner together, followed by a variety of activities with emphasis on fun, fellowship, and service. We work around and from our challenges, knowing that God’s strength is evident in how He enables us and calls us to help one another.”

What a reception we received from the Pure in Heart! Thank you!

The Pure in Heart includes persons with disabilities, their parents, teachers, and friends. They welcomed us with open arms (literally), listened to our stories, and shared their concerns and victories. We had revised our presentation to reflect changes in Billy’s life and my awareness of what I have learned from him. We called it Lessons From Billy.

Chris, who spontaneously led the group in the Pledge of Allegiance, is a photography enthusiast.

A surprise feature was the Pledge of Allegiance, led by Chris, one of the younger members of the group. Following the presentation, we enjoyed delicious refreshments and energetic conversation.

The philosophy of The Pure in Heart was evident:  “Every person on earth has special needs. Some needs are more evident than others. Within our church, we all find love, acceptance, and a little  extra help when needed. Every person also has special gifts and our friends’ gifts are well worth discovering.”

A few days later we returned to North Carolina to speak with students and educators at Western Carolina University. Dr. David Westling has invited us to join his students for several years and we always enjoy being there. This time Dr. Valerie Mazzotti welcomed us into her class (SPED 413) for our presentation. Afterwards we were treated with a lovely meal and a conversation full of ideas for the future of education! It is such a privilege  for Billy and me to return to a place we worked and loved,  to see our old friends and to meet new ones.

WCU's Dr. David Westling, Dr. Valerie Mazzotti, Dr. Lisa Bloom, and Dr. Jane Schulz

Both of these events, with unique audiences, illustrated the positive contributions that many people are making to ensure that persons with disabilities have opportunities to develop into happy and productive adults. Thank you, Jackie and David, for your dedication and passion for what you do and for whom you serve, and for  your gracious hospitality.

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.

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?

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?