Accessible Death – Proposal

35th CSUN Assistive Technology Conference

March 9 to March 13, 2020
Anaheim Marriott
Anaheim, CA 92802

Summary

How will a family member with severe intellectual disabilities experience the death of a parent? These are our plans for accessible death.

Extended Summary

Nothing Is Forever

“Hello, I must be going.
I came to say, I cannot stay, I must be going.
I’ll stay a week or two,
I’ll stay the summer through,
but I am telling you,
I must be going.” Captain Spaulding, Animal Crackers

Inclusion

We want to make sure that Siobhan understands what is happening and feels included in the process. A home wake will hopefully give her time to take it all in. We will include some of her favorite music for the wake playlist. We’ve purchased a family burial plot at a cemetery one mile from our house. We have plans for an accessible headstone.

The Headstone

“Higitus Figitus zumbabazing,
I want your attention ev’rything!
We’re packing to leave come on let’s go,
books are always first you know!”
Merlin, Disney’s Sword in the Stone

In this case it’s the headstone that comes first. Siobhan communicates using the Picture Exchange Communications System and cannot read. Symbols are her vocabulary. A headstone with lots of text won’t work for her. The fact is it doesn’t work for others either. The finished piece has to have impact from a distance. I worked with someone who was tasked with designing banners to be mounted on light poles. When I saw the design on computer with lots of small cursive text I was sure it would not work. Indeed, everyone complained about how you couldn’t read the banners fifteen feet up in the air. All we needed was the event, place, date, and time. What we got was a jumble. The headstone will be designed with our etched photos in the form of the symbols Siobhan uses every day. Keeping it simple will be a challenge.

Introducing the Concept

Siobhan will have to be introduced to the headstone very gently. If we overdo an introduction to something new she instinctively backs up, sits down like a mule you want loaded on a boat, and that’s that. Perhaps we’ll try some drive-by visits to the burial plot with no comments at first. Just a look and then drive away. Maybe a paper mock-up of the headstone mounted on foam core can be used before committing to stone. Perhaps this mock-up can be experimented with at home at first. The important idea is to make this a regular part of the scenery well before the need. Since she loves having a purposeful job to do we might introduce her to visiting the grave with a shamrock symbol for St. Patrick’s Day and a Santa symbol for Winter Solstice and on through the year. We can use some Velcro affixed to the headstone so she can just add the symbols as needed. In this way she’ll have a place to go and will hopefully feel included. Or maybe it will be like Joe’s family visits taking the grave decorations to his grandmother’s plot. He usually waited in the car sulking. The point is to have a marker to denote the spot when Siobhan asks for us.

The Burial Plot

We asked for a site next to a paved roadway. The site we chose affords maximum accessibility in all senses of the word. When picking the location we were shown three plots. The idea of being buried under a shady tree is engrained in thinking about locations. Two of them were in some shade but were all jumbled up with roots among other plots placed at what seemed to be odd angles. Some may see cool shady spots, all we saw was tripping hazards. The third plot is just right, out in full sun with some palm trees in the mid distance and the Santa Monica mountains in the far distance. It will be well lit by the sun most any day of the year. A nice touch is a headstone on a plot in the row behind ours that says “Mother, Mary A. Allen, March 14, 1921, At Rest.” Glad to know she at last got a moment of rest for herself. The graveyard is a mile from our house and is on the bus line. The plot is a short walk from the entrance right next to a paved drive and is flat and level. With the exception of a low curb the site is as physically accessible as we can get.

Home Funeral

Joe’s Dad, raised wild on a farm in Ireland, told stories of making mischief at wakes like hiding in the thatch and spitting down at the women saying the rosary until one of them remarked that it must be raining out. Great craic! A home wake is as natural as any other phase of life. Except in this country. Bodies are not poisonous. They can be cared for the same as an infant: washed and dried and displayed for family and friends to experience.

The Wake

“It used to be the custom in most Celtic countries in Europe for mourners to keep watch or vigil over their dead until they were buried — this was called a “wake”. This is still common in Ireland and North-western Scotland.” Wikipedia

Supported

Being supported by family means a lot to Siobhan. She thrives when people are around and visiting. Hopefully the wake will provide her with some time and space to get used to the idea while feeling supported. It need not last very long, a few hours will do.

Customizing The Experience

What will a wake look like in your family? Will there be music and pictures of the deceased? Dancing? How will this be made accessible to the whole family? Will everyone feel included? There’s some work to do to make that happen. Playlists of music provide a good place to start. Siobhan has definite tastes in music. She likes classical and show tunes and The Beatles and movie music. Including her favorites is another inclusionary point. To try out the concept Joe has created a playlist for himself. Highly autobiographical, the list includes some pieces familiar to Siobhan. She also loves to look at photos of people in the places to which we’ve traveled, or outings with friends, and with her dog. Pictures can play in rotation on display screens.

The Interment Ceremony

At the end of the wake we will see the body off for cremation and the mourners will disperse. When all is ready there will be another gathering, this time at the cemetery. With everyone gathered at graveside we will encourage people to make brief comments. The grave will be open and the urn will be placed with symbols to add in. We will keep it light and have some additional symbols on hand to affix to the headstone to show Siobhan how to do it and help her to join in. Then a meal for everyone.

The End

And so we hopefully have provided a few ideas for making death accessible for someone who has severe intellectual disabilities. Methods can be employed to make the process as accessible as possible for everyone. Be sure you account for the needs of friends and family. If you are someone or are assisting someone with hearing, vision, or motor issues why not plan ahead and make sure there will be signing and captioning, audio description and tactile graphics, and easy access.

We must set aside our distaste for death in order to plan ahead to make sure that when the time comes we will have a calm orderly process. Our plans won’t work for everyone. Make your own plans. Make death accessible.

To discuss this I’m on Twitter @AccessibleJoe.

Siobhan and the Wizard of Ounces

Presentation Proposal Accepted

CSUN Assistive Technology Conference
March 11 to March 15, 2019
Anaheim Marriott
Anaheim, CA 92802
Date, time, location of presentation.
Slides are on Slideshare.

Siobhan and the Wizard of Ounces

Abstract

Siobhan’s speech generating device is worn out and malfunctioning. The race is on to find a replacement, but nothing available suits her needs.

Extended Abstract

Communications Support Vital

Joseph Karr O’Connor, Linda Karr O’Connor, and Siobhan live in Santa Monica, California. Linda and Joseph help support Siobhan’s use of the Picture Exchange Communication System (PECS) protocols and Augmentative and Alternative Communication (AAC) systems.

We share from a parents’ perspective the struggle to ensure that Siobhan, now 26, keeps communicating.

Virtually every non-vocal person with developmental disabilities can acquire functional communication during 22 years of education. If every student left school with functional communication skills, the adult services world would become one where functional communication is supported and expected. Instead it is not and it is up to the family to provide support.

Despite the availability of low-cost, research-based communication methodologies which are successful if properly implemented, adults with cognitive disabilities who are non-vocal are often left with nothing but grunts and gestures to express their wants and needs. This is a deprivation of human as well as educational rights, and places them in potential danger as they resort to unwanted behavior to attempt to communicate. Siobhan is one of the few educated in functional communication. For her own well being, safety, and greater enjoyment of life, support of her communications systems are vital.

Acquiring A New System

Siobhan’s communication depends on implementing PECS protocols through the use of speech generating devices (SGDs). She is using a Tobii Dynavox Xpress, a model that is sadly discontinued. The Xpress is malfunctioning and held together with tape. The race is on to get an evaluation to prove to insurance that she still needs an SGD, evaluate systems, do trials, choose a system, submit the funding request to insurance, purchase the system, have it delivered, and do the configuration.

Form Factor

From experience we can say that the device should be small and light enough for Siobhan to hold with one hand and talk with the other. Form factor is an aspect of hardware design which defines and prescribes the size, shape, and other physical specifications of components. A small form factor is critical for Siobhan. It is most unfortunate that SGD form factor design has been engulfed by the design characteristics of the Apple iPad. “Just like an iPad!” chant the sales team. That is not the form factor Siobhan is looking for. A new device should be light and portable.

Symbol Set

Linda and Joseph attended PECS training presented by Lori Frost and Andy Bondy in 1997. Siobhan started using her first SGD, a DynaVox DynaMyte 3100, in 2003. From the experience gained through years of experimenting with symbol libraries it is essential that a new device must have a license to use Picture Communication Symbols (PCS).

Voice

A person’s voice is unique and distinct. As Siobhan grew we changed the voice to best represent her age. A few years ago after some experimentation we settled on an adult voice that actually has an attitude, Susan by Loquendo. This voice or an approximation of it is essential to the way we percieve Siobhan to be. A new device should have a license to the Loquendo voice pack with the Susan voice.

Battery Life

If you are vocal, how many hours a day do you use your voice? The Xpress has interchangeable batteries so when power is low another one can be swapped in. This provides extended use. Unfortunately new systems have built-in batteries that only last a portion of Siobhan’s talking day. A new SGD should have interchangeable batteries.

Software

An essential component of a new system is software. The software that runs on the device should be easily and quickly configuable. We often have to update photos of new people in Siobhan’s life, add a word, and change the function or location of a button. One essential feature is the ability to do a word count so we can determine if usage is up or down. If communication is up we know that our methodologies are working, if down we need to pinpoint the cause and devise and implement a strategy to encourage communication. A new device should have word count as a software feature.

In addition to the software that runs on the device, there is also companion computer software. This can provide a way of downloading the device database, editing the screens, and uploading the new version to the device. Bonus points if it is platform agnostic. Special mention if it includes backing up to a remote server. A new device should have flexible and powerful computer software.

Secret Weapon

We are very fortunate to live within driving distance of the Center for Applied Rehabilitation Technology (CART) at the Rancho Los Amigos National Rehabiilitation Center in Downey, California. CART provides a number of services and one of them is evaluations for AAC systems. Carlene Yonemori and team members did a speech evaluation of Siobhan and recommended that she continue use of AAC systems. They then made some suggestions about new systems and with our input selected potential systems. They arranged for trials of the systems. Then Siobhan met the Wizard of Ounces and the magic happened. But you’ll have to come to our presentation to hear all about it. See you there!