SEPTEMBER 2017
How to Build a Communication Toolkit Written By: Carol Teltschick, Amy Roman and Janet Nunez
About this Document Read this document to find out how your organization can: Identify and obtain the communication tools that best suit the needs of your clients Make sure you are putting tools into the hands of the right people Train and support the people who are directly providing services to your clients
What is the Disability Communications Fund (DCF)? Disability Communications Fund (DCF) provides funding and support to organizations that serve the communication needs of Californians with disabilities. Our goal is to promote the expansion of quality communications access programs and services to individuals with disabilities and to strengthen the sector of providers.
Why DCF Wants to Help You “The right to communicate is both a basic human right and the means by which all other rights are realized. All people communicate, and are presumed to have an active interest in communicating their decisions and choices.” (See the TASH Resolution On The Right To Communicate)
The field of Augmentative and Alternative Communication (AAC) for individuals with disabilities is broad and very complex. While highly qualified specialists assess the needs of clients and guide the selection of communication tools, specialists are very limited in number. Fortunately, other service and care providers can help clients, if they have been trained in the use of communication tools. There are many communication tools to choose from, so it can be tricky to figure out which ones are best suited to the needs of your clients. Equipment ranges from high tech devices that can generate speech, to simple communication boards with pictures, letters and phrases that clients can point to. To help you find your way, this paper provides you with case studies of two of DCF's most successful grantees and a list of resources. Â Learning from the case studies, you should be able to develop a methodology for selecting the tools that best fit your clients, your staff and your organization.
Learning from Case Studies Learning about the experiences of other organizations can help you create your own custom toolkit and train your staff to use it. The organizations we will examine are:Â
ALS Association (ALSA) - Golden West Chapter The Golden West chapter of ALSA (Golden West) supports people living with ALS and their loved ones. They provide services, tools, and education to 31 counties throughout California and Hawaii. With grants from Disability Communications Fund, Golden West has been building their AAC lending program over a period of five years.
Parents Helping Parents (PHP) PHP helps children and adults with special needs receive the support and services they need to reach their full potential. PHP has been helping clients through their Assistive Technology (AT) center since 1998. With grants from the Disability Communications Fund, PHP has been providing communication tools to adult programs for more than two years. These adult day programs (which are not affiliated with PHP) serve clients from the age of 18 up, including seniors.
How to Develop a Toolkit Golden West A good to way focus your ideas about a communication toolkit is to ask yourself the right questions.
Who will benefit from our toolkit?
Golden West serves persons with ALS (PALS), most of whom experience difficulty with speech and movement during the course of their illness. Some PALS completely lose their ability to speak and to use their hands.
Who will use our toolkit and what should it contain? Golden West found that the answer to this question changed over time. They began by providing tools and training to speech therapists, then shifted their focus to care managers who see clients more frequently and spend more time in their homes. The first toolkit Golden West created—the AAC (Augmentative Alternative Communication) Toolkit—was designed to help speech therapists evaluate the needs of clients.
AAC Toolkit for use by Speech Therapists ($6,200): Eye / head trackers Speech generating device, voice amplifier and hands-free mic Switches and chimes
High & low tech communication boards and pointers Printed and online instructions, handouts and videos Carrying case
TOTAL OF 7 AAC TOOLKITS DISTRIBUTED. FOR FULL DETAILS AND PRICES, GO TO: http://www.livebinders.com/play/play? id=1722499
The AAC Toolkit is expensive but after training speech therapists to use it, library loans increased by 40%. Golden West was pleased, but still not satisfied because many clients with ALS still didn’t know about their program or their tools. So the next year, they set the goal of reaching more people. They made a smaller, less expensive Mini-Toolkit that care managers could carry into the homes of clients, and trained care managers to use it.
Mini-Toolkit for use by Care Managers ($750): Switches Communication boards and pointers Voice amplifier & mic Binder and videos
TOTAL OF 25 MINITOOLKITS DISTRIBUTED. http://www.livebinders.com/media/ge t/MTQ2NzY4NDk= The Mini-Toolkit is inexpensive, based on highly useful tools that are easy to learn, and easy to carry around. Simplicity and portability is extremely important. Care managers see clients every three months, and during that time, it is common for a client’s needs to change. For example, a client can go from needing tools that assist writing to tools that assist communicating with finger, head or eye-movements.
How to Develop a Toolkit - Parents Helping Parents
To build their communication toolkit, PHP focused on three basic questions: Who will benefit from our toolkit?
Which tools will work the best?
PHP observed that, while individuals with special needs use communication tools in K - 12 classrooms, they usually lose access to those tools when they graduate and transfer to adult day programs. Also, older clients, who were in school before communication tools were readily available, never learned to use them at all.
To find the answer, in 2015, PHP trained staff at five different adult day programs to use a wide variety of tools. Then, based on real-life, realtime feedback from adult day program staff, PHP created a "toolkit of successes."
What is the best way to distribute our toolkits? For their 2016-17 project, PHP collaborated with 6 device lending libraries throughout California. They trained lending staff who in turn trained staff at 2 -3 adult day programs in their area.
They learned that tools had to be: Inexpensive Durable Portable Easy to use Easy to customize Instructions readily available
PHP Communication Toolkit ($2,000): Picture communication boards Communication lanyard (wearable) Choice boards Visual task strips Recordable communicatiors (Sequencer, Go Talk 4 and Go Talk 20) iPad in durable case with 6 communication apps Binder of useful symbols, to customize communication pages and overlays
Lessons Learned Golden West Train the Right People Clients were better served by giving tools to care managers directly instead of giving tools to only speech professionals. As soon as Golden West started training care managers, equipment began to fly out of their lending libraries! Soon, they were happily facing shortages. While it never occurred to care managers that the library might run out of things, they soon learned to be resourceful. For example, when boogie boards became so popular the library ran out, care managers realized they could ask households with sufficient budgets to purchase their own boards. The boards cost around $20, and are readily available for purchase.
Practice (and Support) Makes Perfect During any training session, trainers made sure that care managers practiced new skills several times. After training sessions, trainers were available for calls to answer questions that came up on the job. Library staff learned to check in directly with clients every three months to make sure their equipment was working and in use. If the equipment was not working, a care manager or speech therapist would resolve the problem. If the equipment was no longer in use, a care manager would collect it and replace it with something that did work, or request an assessment by a speech therapist.
Keep Data Collection Simple Clients suggested a database that care managers can access from a client’s home to request equipment, fill out loan forms or, when equipment is not available, add names to a waitlist. This would get equipment into the hands of clients two weeks faster, and cut back on staff time too.
The Best Ideas Come from Clients Clients suggested a database that care managers can access from a client’s home to request equipment, fill out loan forms or, when equipment is not available, add names to a waitlist. This would get equipment into the hands of clients two weeks faster, and cut back on staff time too.
In just a few seconds, a care manager can circle the right letters, snap a picture of the form, and email it to the lending library coordinator. The collection slips tell Golden West which tools are popular, and help them find out why some care managers don’t use certain tools. If a care manager doesn’t submit slips, Golden West can follow up to see if the care manager needs support.
Lessons Learned Parents Helping Parents
High Turnover There is high staff turnover in adult day programs, so PHP made it easier for lending library staff to train new hires by creating a flash drive of training materials. The flash drive contains: PHP's Power Point training presentation, marketing materials with outreach flyers, videos that demonstrate tool use, links to websites that show how to customize tools, and printable templates for creating or customizing communication boards, communication strips, and marketing materials.
Speak the Right Language It is important to find out what language a client speaks at home. At one adult day program, staff reported a woman to be "nonverbal" but in fact she could speak: in Chinese. Using the tools in the communication kit, adult day program staff can now customize communication boards to match the primary language of the client.
Weak Point in the Chain When you have only one person in charge of a lending library, that person can become a weak link in the chain. If the lending librarian quits or becomes disinterested, you've lost your investment in their training. PHP encouraged lending libraries to train at least two people, but in many cases two people simply weren't available. In the future, PHP might try contacting directors or managers of lending organizations to propose workarounds, such as alternate trainees.
Overall, PHP learned that training was most successful when their work centered around these important questions: Â What is Communication? and How Can I Help My Clients Communicate? Â There is seldom a one-size-fitsall solution. The best tools and strategies depend on the unique needs of individuals.
Success Stories – Golden West
Presenting at the National ALS Conference helped Golden West reach a lot of people: speech therapists, care managers, fund raisers, and program developers. This meant sharing many different kinds of information. • Care mangers told real stories about how the right tool helped a client. • Program developers shared tips on training, equipment selection, data collection, online resources, lessons learned and grant applications. Collaboration and community outreach strengthened relationships between everyone: organization to staff, staff to staff, and staff to clients. Collaboration also extended to care providers at hospice agencies and nursing homes, where care managers were invited to conduct trainings. Speech therapists took their toolkits further afield, training health professionals at local hospitals, practices and clinics.
PERSONAL STORIES During a home visit with a woman who had been living with ALS for several years, a care manager noted that the woman looked depressed. She made polite eye contact on occasion, but did not engage with the care manager. The woman’s care provider, a nephew who lived with her, explained that she hadn’t spoken in years. The purpose of the care manager’s visit was to get approval for Hospice and, when asked how Hospice workers would communicate with the client, her nephew said, “Oh I know what she needs.” Nevertheless, the care manager presented a communication board designed for eye-gaze responses and demonstrated its use. When she asked the client if she wanted to try it, the client appeared eager and enthusiastic, nodding “yes” then using the letter board to spell out “thank you.” The look of pride and satisfaction on her face was priceless. The care manager gave the woman a communication board of her own, and she used it to express her needs to her hospice team. Another client expressed that he was exhausted after the first hour of his ALS clinic visit and felt he was running out of breath. He explained that he tires quickly and that speaking drains his energy. The care manager demonstrated the use of a High Gain Headband Mic and Voice Amplifier. The client’s wife said it would be helpful because her husband was having a difficult time projecting his voice. The care manager loaned them the equipment and later saw the couple walking out to their car appearing happy, almost giddy, to still have enough energy after a long day to be able to communicate with one another.
Success Stories – Parents Helping Parents
As providers of adult day programs learned about communication tools and how simple they can be to use, clients who were minimally verbal regained a sense of self-determination and self-expression. With communication tools, clients could say what they liked and didn't like, what they wanted and didn't want to do, or ask for "alone time." Providers began to understand more about who their clients were, and non-English speakers began using picture-based tools to communicate. Several adult day programs, after seeing first-hand how much the PHP toolkits helped their clients, became so excited that they found a way to raise funds to purchase some of their own tools. This is significant, given that these programs have extremely limited funds for “extras.” PHP excels at collaboration and community outreach. In 2017 they are reaching out to find more clients by collaborating with community employment programs, supported living programs, and independent living programs.
PERSONAL STORIES For years, a 39-year old client, very physically impaired, in a wheelchair with limited arm movement, had been communicating with day program staff by nodding “yes” or “no,” or by looking at an object he wanted. He had little to no exposure to technology in the past but when staff set him up with a head-mounted laser-pointer and a letter board, he used the pointer and board to spell out his name. This was truly monumental as it was the first time the client was able to show that he was literate. Staff became excited and the client proceeded to spell out the names of the staff, then selected words on the board that made a sentence. Thanks to two simple tools, the client was suddenly able to express his needs, choose his activities and generally communicate with people around him. It was life changing, and opened up a new world of possibilities. Staff realized that their client had a lot to say and could benefit from higher-tech devices. They are now raising funds to provide him with a computer and eye gaze system. Comment from the UCP Day Program of San Joaquin: “Great day! Baking class was awesome. We used the Talking Pictures and sequencer devices to name the ingredients and the sequencer to do step-by-step tasks. We also used the iPad to show how to make chocolate chip cookies for our cooking club to pass out to other clients. These tools helped clients that cannot speak. We were able to have a conversation about our cooking class with the iPad.”
Becoming Part of the Community By partnering with local hospitals, schools and other community agencies, both Golden West and PHP were able to reach more clients and, along the way, became more connected to their community.
Call to Action
If you think your organization and staff could benefit from a communication toolkit: Work with a speech and language specialist to build your own. Identify the answers to the following core questions: o Who will benefit from the toolkit? What are their needs? o Who will use the toolkit, and what tools should it contain? o What is the best way to distribute toolkits? Get advice and assistance from an organization that successfully implemented their own communication toolkit.
Resources
Live Binder, for details about every item in Golden West toolkits: http://www.livebinders.com/play/play?id=1722499
Free language and communication materials: https://www.speakingofspeech.com/materials-exchange.html
Allow Me!: A Guide to Promoting Communication Skills in Adults with Developmental Delays, by Irma D. Ruiter Ability Tools AT Exchange, a free service that connects Californians who need assistive technology for independent living: https://exchange.abilitytools.org/
More about augmentative communication, Golden West: http://webgw.alsa.org/site/PageNavigator/GW_8a_augmentative.html
More about assistive technology, Parents Helping Parents: http://www.php.com/assistive-technology
About the writer & contributors: Carol Teltschick is a Word Spark writer and editor. carol@wordspark.net Amy Roman is Augmentative Communication Specialist with ALSA Golden West. amy.roman@sbcglobal.net Janet Nunez is Director of the iTech Center at Parents Helping Parents. janet@php.com