2000 Conference Proceedings

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FREEDOM OF SPEECH: Successful Advocacy for Augmentative Communication

A Parent/Para-Professional's Viewpoint

Karen Duncanwood
13653 Camilla St.
Whittier, CA 90601
(562) 693-3965



INTRODUCTION

I want to spend a few moments talking about why fluent communication is so key, why I believe it to be the central, most important issue for most people with developmental disabilities, especially those with significant cerebral palsy. It is so critical that I would say when people have fluent communication, they usually have respectful supports and lives they want to live. When people don’t yet have fluent communication, they usually have very limited lives. I will quote my son Ryan here: "Augmentative communication for people who don’t speak easily is a matter of life and death. Without it I am not alive".

Then I will talk a little about the unique and common challenges people with Down Syndrome, cerebral palsy, epilepsy, autism, and what is called mental retardation face in trying to communicate with the rest of us.

Next, I want to address some of the worries parents and professionals have voiced to me about augmentative communication, over the 10 years I worked as a Parent Service Coordinator at the Eastern Los Angeles Regional Center, and what solutions we found together. Then, I want to share some lessons I’ve learned in how to get the good augmentative communication devices and the great teaching that must accompany them to enable those who don’t speak easily to become fluent communicators.


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WHY IS FLUENT COMMUNICATION SO CRITICAL?

I want to begin with fluency. I am not an advocate for a little communication, a few messages or a few switches. I am an advocate for Freedom of Speech – full and fluent communication, as fast as possible. What is and is not fluency? Fluency is not having a switch or two to hit. Fluency is not having 16 messages you can choose from. Fluency is not being able to say when you need help with eating or personal care, so your attendant’s jobs are easier. Fluency is not having a machine available only six hours a day, only five days a week. Fluency is not have trained support to assist you for twice a week for 30 minutes. Fluency is nothing short of what we all who speak easily have: the ability to say what we want, when we want, to whom we want, effectively. If you have any doubt that fluency should be the goal, stop and close your eyes. Think about how your life would change if:

  1. you only had one or two things you could say with a switch,
  2. you could only talk about being hungry or thirsty or needing to use the restroom
  3. you could not ask questions
  4. you could only talk between 9:00 am. and 3:00 pm., 2-5 days a week
  5. you could only learn new language l hour per week,

Why is communication at the center of everything else? I believe it is because language is at the very core of our existence as human beings. It is precisely the desire and ability to communicate with each other, in complex numerous ways both verbal and nonverbal, that makes us unique, and different from the other mammals we share this fragile planet with.


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We humans are highly social beings. We do many more things together, than other species - constantly interacting with each other hundreds of times each day, with and without verbal language. If communication is the engine of our interaction, then expressive language is the high octane gasoline for the engine. It is our potential to master and use expressive language to share our thoughts, to influence and interact with others, to get what we need and contribute to each other that makes us fully human. And it is my belief that every single human being on this earth has the ability to use language in some way.

This belief of mine is different from the common opinion in the disability field that says that many people with disabilities, especially developmental disabilities, are incapable of learning and using language skillfully, and that is why they don't succeed at doing so. Although I too used to have this opinion about some people, especially those with presumed mental retardation or autism, I have come to the opposite view. And I want to thank people with autism, epilepsy, cerebral palsy and mental retardation for leading me through this change.

I now believe everyone can use language, oral or written or signed or symbolic, and be a successful communicator, IF and ONLY IF we find the key to their individual lock. If they are succeeding in using language well, I think it is because we have succeeded in finding the way to help this unique individual. And if they are not, it is usually because we have not yet found the right key to their individual lock yet.

And so, for people who can't use language fluently and interactively, the failure in reality is not theirs, but ours. It is not that they haven't succeeded or can't, it is because we haven't yet succeeded in finding the right tools and support. Most of the time, people with developmental disabilities don't fail, we do. Instead of giving up on them, and ending our search for answers, we must redouble our efforts and search with more skill. We must continue to search for the key to their unique lock, simply because they have always wanted to communicate with us, even when they appear not to want to, even when they turn their eyes down, and even while they are walking away.


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The human brain is astoundingly complex and we are only at the dawn of exploring it. Because our understanding is so small, there is no room for arrogance about what we think we already know. There is only room for humble searching for better ways to support people who don't communicate easily yet. And we must be very willing to shed old ways of thinking that derail our quest for better support.

Once we have acknowledged the ability of some profoundly disabled people , with cerebral palsy and autism and Down Syndrome to communicate at a level equal to and beyond our own, as I have seen several times, we suddenly realize that we can never write off anyone else ever again. Once we acknowledge that we have been profoundly wrong about some, we have to consider that we could be wrong about most. The doors of possibility are then thrown wide open, and people with communication difficulties who become empowered, will never allow us to close them again.

After all, isn't the success of some augmentative communicators the reason for the rapid growth of technology and interest in augmentative communication?. The success of the few who were written off hints at the possibility of success for the many who have been written off. And then we must acknowledge our ethical responsibility as a human species to open the door for all, so all human beings may communicate on a level playing field finally. Only when all the instruments in the human orchestra are invited and allowed to play, can we play the most beautiful music the world has ever known.


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Most people labeled retarded are much less than we think, if at all. Most people labeled unwilling to communicate or participate have been trying to get them to understand them their whole lives. Most people labeled behavior problems have been denied successful communication strategies, training, and equipment their entire lives. They have had tremendous patience with the rest of us who can't yet seem to find the keys to their individual locks. They have amazing tenacity and perseverance to keep trying to communicate with us, when we understand them so little. We must have as much tenacity and perseverance in our search for individual solutions for each of them, as they have had in communicating with us.

Most people who can't speak easily have been written off and isolated either partially or fully for years, or decades in their families, schools, communities, and nations. The two key signs of inadequate communication support I see most often in people who don’t speak easily are: l) passivity, and 2) acting out. If your family member or student acts out, be a little glad. It usually means they haven't given up on themselves, like those who are passive sometimes have. It means they are still willing to try to get us to understand them. Give them respect, good tools, and the best teaching and watch the behavior problems decrease. Could it be that we don't need to modify their behavior as much as we need to modify ours? Perhaps we could say to those acting out, we hear you, we know you are unhappy, and we know you have good reason to because we don't know how to communicate with you very well yet. But we do promise you we will continue to try, and we thank you for your patience with how slowly we learn.


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I think we must fuel our continual searching with four things:

l) great respect – assume their ability & competence

If we are honest, we rarely know in advance what people can do, so we really have only 2 choices, a presumption that they are able, or a presumption they are not. Which do you think drives the search for successful solutions?

2) good tools – we need good machines with excellent clarity and speed

3) excellent teaching strategies – we need to begin by helping people express their personal meaning, i.e. what is important to them, not to us. And we need to show them how to speed up their communication so they can enter the human dialogue, and hold their own until they become fluent communicators. Teaching strategies which focus on teaching people an abstract curriculum, but don’t empower them to say things critical to them in each session probably won’t hold their interest to the hard work necessary to become fluent.

4) high expectations – yes I mean high, yes I mean for virtually everybody we meet.

People who don't use language easily have been isolated, frustrated, and grossly underestimated for a very long time. We cannot ask them to be patient through more of our bumbling. We must give them our very best teaching methods and our great machines. And we must not allow ourselves to underguess their potential until we have provided all three of these things: l) great respect, 2) good tools, and 3) excellent teaching, for as many years as they have been denied them. Only then will we be able to get close to guessing accurately what is possible for each of them.


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If people with Down's Syndrome struggle to understand sound through smaller ear canals, and struggle to speak through poor muscle tone in their mouths, could be begin teaching them language visually through their eyes as preschoolers? If they understand language faster if they get to see it and hear it at the same time, can we help them begin typing on computers that speak each letter and word when they are three years old?

If people with epilepsy struggle to maintain their focus through the electrical bombardment of seizures and the drugging side effects of even our best chemicals, can we commit to support them as they produce language on a computer with voice output that helps them visually keep their place and hold onto their ideas long enough to get them in print?

If people with severe cerebral palsy can struggle with controlling their muscles, sometimes so profoundly that they can't move even their eyes and heads up fast enough to establish the eye contact that tells us they have understood, before we have decided they didn't, and move on, can't we slow down and wait in their gear, patiently, while we give them access to the most powerful tools that require the least muscular effort? What else makes any sense, after all?

If people with autism struggle with sensory systems so sensitive that they sometimes hear sound as we do static on the radio, or see light particles float, or see motion in its hundreds of tiny gradations; at the same time some of them struggle, like people with CP, with muscles that do not usually follow their brain's commands; can we be willing to give touch if it calms, and physical support and pulling back if that helps them get to the letters they are aiming for on letter boards? If we give them supported access to augmentative communication, and their communication increases, what do you think will happen with their frustration, to their behavior problems?


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Could we consider saying to all people with language disabilities that we will protect you from biased IQ tests, which measure so very few of the multiple forms of human intelligence? What do I mean by biased IQ tests, and why do I consider most of them invalid for people with language disabilities? Some of the most exciting work in the field of human intelligence now is recognizing that all people, including each of us here in this room, are gifted in some forms of intelligence and not so gifted or even disabled in others.

All of us have known people who are brilliant at building or repairing things but who can’t spell, or people who are good with words, but lousy with people, and I’ll bet we all know people who play instruments well but who can’t balance their checkbook. Although we know there are lots of forms of talent and intelligence, mechanical, athletic, musical, artistic, social, leadership, etc., IQ tests measure only two – mathematical and linguistic. When was the last time your child was given, or you gave, an IQ test that tested mechanical, artistic, athletic, social or musical intelligence? And so it isn’t really that people have failed IQ tests, but rather that IQ tests have failed people who’s talents are kinesthetic or musical or mechanical or artistic or social, etc., and especially people who have not had access to appropriate language and mathematical instruction.


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Not only do most IQ tests fail to measure most forms of human intelligence, even worse, they attempt to measure this through methods that are inherently unfair to a lot of people with disabilities. How are most IQ tests administered? They use:

  1. visual scanning – looking at several choices to pick out the answer, or
  2. fine motor ability - like pointing or writing answers, or stacking blocks, or
  3. verbal ability – speaking an answer (fairly quickly).

Now I ask you, what are some of the most common things people with cerebral palsy, and other significant disabilities have trouble doing"

  1. coordinating their eyes to see quickly and clearly, including focusing back and forth from near to far rapidly,
  2. fine motor tasks – pointing, writing, manipulating or stacking tiny items
  3. speaking clearly – coordinating a huge number of small muscles in the mouth, with breathing

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Ok now, take a guess about how fair IQ tests are for people with cerebral palsy? If you cannot use your eyes quickly or your fingers accurately or your voice clearly and you can’t do all of these together rapidly, even if you know the answer, you will be judged significantly mentally disabled, when you may in fact not be at all, or very little. You may instead simply have learning disabilities in processing information efficiently.

Even worse, people will begin to treat you as though you are incapable, isolate you more, and you will get fewer and fewer opportunities to engage in real learning and prove them wrong. In turn, you will probably get less technology and excellent teaching as you age, so the older you get, the more disabled they will judge you.

Can we instead set aside the IQ scores? Yes, I do mean take them with the grain of salt they are worth. And refuse to assault people’s self-esteem with the label of poor learner, until and unless we have been excellent teachers?


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BUT WHAT ABOUT . . .

As we begin to focus on serving people with disabilities better, and labeling them less, there are a lot of practical, concrete questions that come to mind. I am asked them all the time, so let me share with you some of my answers.

  1. If we give people communication devices, will they stop trying to talk?

No. Actually the opposite is true. Most people who acquire good devices and excellent teaching end up verbally talking more. Why? We think that the interaction with others that the devices & teaching allow, stimulates the use of language in lots of areas. And talking increases because it will always be faster than the device.

  1. How long should I wait before asking the school to get my child a device?
  2. Not long. The younger the better. The device and great teaching will allow age appropriate communication interaction that will be missing without it. A child who does not speak, but does not have a good device and great teaching misses out on all the learning that comes from talking with others. Missing out on that learning can retard children’s growth, even if there are bright, and especially if they are not.

    We want to duplicate normal development whenever possible. Normal development does not include being isolated in communication.

    Verbal kids start getting attention & interaction with babbling at age one. They interrupt with words at age two, and ask questions with sentences at age three. Perhaps if each of these doesn’t happen at the average time, we should consider devices and teaching which can help them to happen. If we don’t aren’t they missing out on all the self-esteem, independence and learning that comes from interactions with others? Why retard a nonverbal child’s development even further by not intervening early? Why let the social and behavioral problems that come as a result of communication isolation develop and then later try to reverse them? Why not intervene with technology and great teaching early to prevent them from developing in the first place?

    If a child can’t sing Happy Birthday at their friend’s birthday parties at age three, why not give them a machine and let them push a button to begin the song? If a child can’t say the Pledge of Allegiance in second grade, why not give them a machine they can program it into, so they can lead the pledge as Pledge Monitor?

    Please refer to my sample IEP goals with augmentative communication to help you brainstorm creatively about your own child or student.

  3. If my child gets a device and good teaching, will they only outgrow it?
  4. Hopefully. Then they can use more powerful ones, that allow them to communicate more quickly, and with greater sophistication? Didn’t we all outgrow three year old vocabulary & sentence structure for six year old vocabulary and sentence structure? Isn’t the talking of Jr. High students much different than that of 3rd graders?

  5. Whose responsibility is it to get my child a device and good training? What if the school resists?
  6. The schools are the primary responsible agency to teach children language, and develop them into fluent communicators. And thus schools should approached first, and repeatedly. However, children are usually awake 14-16 hours a day, only 6 of which are spent at school. I believe Regional Centers have some responsibility also. Perhaps they can help you advocate with the schools, or buy a device (which will be used at home & school) and have the school do the teaching? Medi-Cal can buy communication devices and provide some training, though often not enough.

    If you agree as a parent to do your part in communicating often with your child and encouraging their device use, then agencies which have responsibility for services to your child under the Individuals with Disabilities Education Act (for the schools), and the Lanterman Act (for the regional centers) should be willing to buy the device and provide the teaching. If they won’t, perhaps you can get advocacy training and enlist the support of advocacy agencies to help you convince them, one way or the other. Does your child deserve anything less?

  7. If my son or daughter is leaving or has left school, is it too late to learn to communicate?
  8. Absolutely not. If your son or daughter breathes, they can improve their communication skills at any age. I have seen 42 year old men with cerebral palsy get their first communication devices and become fluent communicators. I have seen 38 year old men, and 18 year old women with autism get their first devices, and access to facilitated support, zoom. The earlier, the better, but it is never too late. Older students may require our most brilliant teaching methods, but they should not be denied Freedom of Speech just because they grew up when the devices didn’t exist and when we thought they had little to say.

  9. If my son or daughter is an adult, who is primarily responsible to provide good devices and great teaching?

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Adults can sometimes receive devices through private insurance, but usually not without an appeal and legal support. Since Protection and Advocacy’s agreement with Medi-Cal a few years back, Medi-Cal will now buy devices, and do some teaching, but only through Medi-Cal approved evaluation sites, and they sometimes provide insufficient training. Department of Rehabilitation has some responsibility to provide assistive technology and teaching used to meet independent living or vocational goals. If none of these avenues works, Regional Centers have responsibility under the Lanterman Act. Regional Centers can pay for both devices and adequate training. People who have some SSA or earnings (not just SSI), can set up PASS accounts to essentially have Social Security buy the device. I have assisted people to get devices through most of these channels. But the real challenge is not in getting a device – its in getting a good enough device and especially in finding excellent teacher/trainers.


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7) If my son or daughter can’t use their hands well, how can they work a device?

If a person has any reliable muscles in their body, a variety of switches can be hooked up to them. There are eyebrow switches and mouth puff switches, etc.

If they have very poor muscle tone or irregular muscle tone, or very poor aim, or problems starting or stopping motion, facilitated support may be necessary. An assistant can help support their wrist or forearm or isolate a pointing finger or help them pull back if they hit a key over & over. There is nothing wrong with combining positive physical support with a communication device. For some people, it is the only way they will get access to augmentative communication. I have seen people who needed facilitated support initially, who became independent users, without any touch at all. There are over 45 people in the world who began with facilitated communication, who became independent typers, with no touch from another person at all and are now moving on to selecting communication devices with sound output.

  1. How will I know if the person I support will really succeed with augmentative communication?
  2. You won’t, until they receive a good device with excellent teaching for a while. Most people who I see who are not fluent users have not been given the right machines or the right teaching. Everyone wants to communicate, although it may take a while to convince people who have been left out so long that’s its worth the effort and will work. You don’t know ahead of time who will succeed and how fast. But why not try? What could be worse than being as restricted as nonverbal people are now? And isn’t Freedom of Speech a constitutional right?

  3. How do I find highly skilled, respectful teachers/trainers?

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That is the hardest part. You must search hard. Ask every agency and good person in the field to recommend some. Call and talk to them. Ask them to describe some of their best successes. Ask them if they have succeeded with people like the one you are calling about. Ask them what worked and what didn’t. Ask them if they will pass your name and number onto to adults they have helped or parents, so you may talk to them directly about a professional’s skill whose worked with them.

If you are not satisfied with their answers, keep searching. Ask assistive technology centers, who the best augmentative communication interventionists they know are. Ask people who are fluent speakers with their devices, who their teachers were. The key is not what credentials they have after their names. The key is how many people they have assisted to become fluent communicators. Ask them. When you finally find a competent, insightful teacher, support them well. They are rare and worth their weight in gold.


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HOW TO NAVIGATE THE SYSTEMS TO GET WHAT YOU NEED

The School System

One question we might ask very early of children with disabilities is where do their gifts lie? Are they good at quick movement, with good hand eye coordination and motor planning skills? Are they good at getting people’s attention? Are they good at persisting until we interact with them? Are they good at observing in great detail, be it fish in a fish tank, or programs on a computer screen, or other children’s actions? Are they good at mimicking and learning from us? Are they good at putting things together and taking them apart? Do they have artistic intelligence? Do they remember TV advertisement jingles much better than things in print, indicating some auditory talents and possible musical intelligence?

Another key question to ask is how do they learn best? Do they learn best if we speak to them? Do they learn best if we show them a word or picture? Do they learn best if we show them with our hands, or if we walk them through a routine? If we do not carefully observe how an individual best learns, we will not be able to teach them very well. For an excellent parent or teacher or speech therapist or computer interventionist must adjust their teaching methods to an individual student’s strongest modes of learning. They must teach each communication student differently, because each individual is very different from others.

So one of the first questions you might ask someone working with your son or daughter, is "How does my child best learn?" If there is hesitation or stumbling around to answer that question, it is a cause for concern. Don’t write off that teacher, but ask them to please observe how your child learns best for a few weeks, and then call you to talk again. An effective teacher needs to know how the student learns best.


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I continually see poor practices in this area. Kids who don’t learn best through their ears, get only talked to and not shown visually at the same time. Teachers who have slightly visually impaired students or kids whose attention wanders put them in the back of the room. Speech therapists who serve kids whose arm and wrist coordination is weak give them huge switches to work, instead of stabilizing their wrists and giving them smaller keyboards to use with fingers that are more coordinated.

Kids and adults with disabilities simply don’t have time for us to use poor methods. They will fall further and further behind. Most damaging is that if we don’t recognize and change our poor methods, they will get blamed for our failure, and give up on themselves. It will be claimed that they have failed to progress, when usually the reality is that we haven’t yet found the right approach with them. Once they have lost faith in themselves, we have really lost the chance to help them. We owe kids and adults with disabilities nothing less than absolute brilliant support.

Isn’t that what we’d want if we were in their shoes?


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Ok, now for some specific advice about schools:

  1. You may call an IEP whenever you wish. You may have several IEP’s a year, if that’s what it takes to get your child what they need.
  2. If you believe your child needs augmentative communication or assistive technology and doesn’t yet have it, make a written request for a augmentative communication and assistive technology assessment. The new amendments to the education law (IDEA) include the right of any child to be considered for assistive technology. Every IEP is supposed to consider whether assistive technology would help the child to "maintain or advance their skills". You don’t have a right to all technology, but you have at least the absolute right to an assessment to see what communication devices or technology would help. Please refer to the handouts on Assistive Technology Amendments to the IEP.
  3. Make sure the person doing the assessment is highly skilled. Ask how many assessments they have done, with whom, and the results. Ask how many people they have helped to become fluent communicators. Ask where they received their training. Ask which machines they know best, and least. If you are uncomfortable with the answers, ask for another person, more experienced to do the assessment. If they say they don’t have anyone else, ask them to contract out to someone outside the district. That is one of the ways they are allowed to meet your child’s need.
  4. Make sure the assessment explores the better machines for your child’s abilities and disabilities. This is really important. I have seen far too many kids and adults get stuck on lousy devices, that don’t allow them real freedom of speech but only allow them to say a few things once in a while. You can tell this if you observe the assessment. If your child is excited by what they are shown, and how they were respected, great. If not, appropriate possibilities may not have been explored.
  5. Ask for the evaluation report in writing a week before the IEP. I advise parents to write this request on the permission slip they must sign before the school can do any assessment, so they can refer professionals to it if they forget. I hate to be surprised with new information they have already studied. I don’t process information as well hearing it as seeing it, so I always request reports in advance.
  6. Ask someone else in the augmentative communication/assistive technology field to review the assessment with you before the IEP.
  7. Draft some possible IEP goals using augmentative communication or assistive technology. Visit your child’s classroom to observe how they might be communicatively segregated within the classroom, and use those observations to suggest communication inclusion goals. Please see the handout on IEP goals.
  8. Go to a public assistive technology center to explore possible technology for your child. The Alliance for Technology Access maintains centers around the county. They have six in California. The one nearest you is noted on the Resource Sheet.
  9. Take a friend with you to the IEP to take notes. Take an advocate with you if you sense you will have to seriously advocate for what your child needs. Read the IEP notes carefully before you consider signing them. You don’t have to sign the same day as the meeting. You can take a copy of them home to review for a few days, or show your husband, or other family members.
  10. Negotiate with respect – for your child, the school staff, etc. But do not be talked out of your child’s need for augmentative communication or assistive technology. Do not let them stall, do not let them avoid. If they use their problems as a reason they can’t do what your child needs, tell them you understand their problems, but they are their’s to resolve. Your child has only l school life, and it must help them become as skilled and independently as quickly as possible. Their schooling will not succeed without the right tools and teaching. If you must file for hearing, do so. Do not sign any IEP that does not have in writing exactly what your child needs. Keep negotiating until it does.
  11. If you must go to hearing to get what you need, make sure you get an advocate. If your Regional Center counselor is good and skilled, ask them. If not, ask them to put you in contact with the Client’s Rights Advocate. If it will be a difficult, prolonged struggle to get what your child needs, call Protection and Advocacy directly, asking them to recommend someone or to represent you and your child.
  12. Most of the time you can resolve differences with the district and get what your child needs in mediation, before the formal hearing. But let the district know you will not give up on your child and will go to a hearing if necessary. Often that alone will get positive results.

  13. Use the Assistive Technology amendments to the IDEA. Have copies of them available for the team at the IEP. Copy and distribute them to the team the week before your IEP. If the school staff still appear not to be familiar with them, read them together aloud, and discuss their meaning.

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The Regional Center

Under the Lanterman Act, which governs the Regional Centers, your son or daughter has a right to services which meet their IPP goals. They and you have the right to suggest any IPP goal. The new Lanterman Act amendments are quite person-centered. They essentially say that your hopes and dreams and goals for your own life (or your child’s) should be in the IPP, and it is the job of the Regional Center to help you meet your life’s goals.

So if you want your child to have a device and training so they can tell you what happened in school that day, ask that that goal be written into the IPP. If you want your child to be able to end their social isolation and talk with other children in the family, day care, or church, ask that those goals be written. If you want your child to be able to say the evening blessing, or tell a joke, or sing Happy Birthday, ask that those goals be written.

If your counselor does not seem willing to do so, write the goals out yourself, and give them a copy (always keeping one for yourself). Do not sign any IPP which does not have what you or your child needs in it. Keep negotiating until your needs are on paper. I have found it much easier to negotiate over goals than over a service. Make sure your have strong goals and the negotiations over services will go much easier.

Your child also has a legal right to services and supports which normalize their life. Being able to communicate is a normal experience. Not being able to communicate is abnormal. After you have communication goals in the IPP, the Regional Center must then help you locate services to meet them, or provide the services themselves.

If you need to file an appeal do so. The first step again, will be an informal conference. Often times things are settled then, particularly if your preparation is good, your arguments well developed, they know you have learned about your son or daughter’s legal right, and they realize they will lose if they refuse any longer.


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If you file an appeal, they must give you a written Notice of Denial with the reasons for it within 10 days. "Lack of funds" is not a legitimate reason for denial. If that’s what they are telling you verbally, sometimes simply asking them to put it into writing will cause them to change their mind, because they know what they have told you verbally is illegal.

If you do decide to appeal, have confidence. Know that about 80% of appeals are won, most at the informal level. But be prepared. This is you or your child’s future you are advocating for. Give it the preparation time it deserves. Ask others for assistance. Also, if you decide to appeal, get support – a friend, fellow advocate, your Client’s Rights Advocate or Protection and Advocacy.


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Medi-Cal has been buying communication devices for a number of people. They will only do so with an evaluation from a Medi-Cal approved evaluator. Ask your Medi-Cal worker, or your Regional Center counselor where to get such an evaluation. If you get stuck, call Protection and Advocacy, as they negotiated the agreement with Medi-Cal and want to monitor they are following it.

Sometimes the Medi-Cal approved sites don’t do as much training support as the consumer feels he needs. It is ok to ask Regional Center to supplement what Medi-Cal will do. If you can find a good augmentative communication specialist who will be willing to offer additional training and can get Regional Center in advance to verbally agree to fund some sessions, the Medi-Cal evaluator might be more willing to recommend a better device. I have seen some evaluators recommend limited devices because of the limits on their teaching time, and if they know others will help with the teaching, they sometimes are willing to fund more powerful, complex devices.


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The Department of Rehabilitation

My advice here is going to be the weakest, because frankly our experience with them has been the worst, and I have yet to figure them out. I haven’t yet been able to study the legal regulations which govern DR, but I have been to some trainings where they are alluded to.

Like all service systems, the regulations governing them have been revised in the last two years. I’m told the newer regulations are somewhat more respectful, i.e. they actually ask people what work they want to do or be trained for. And I’m told that customers are to have input into the new document, called the IPE about their goals and plans. What a unique idea!

And I’m told that the Department’s job is to give people the services and supports they need to reach their own vocational objectives. I just have yet to see it happen. I’ll have to be honest. Most of the parents I know of young adults have not had a positive experience with DR. And most of the progressive professionals haven’t either. It seems lots of people are baffled by DR. I do have two friends who work in DR and they actually serve their customers, so I know its possible.

Ryan and my personal experience has been abominable. It’s taken 15 months to get any service at all. During the first month we met with supervisors and district managers to ask them if they had anything useful for Ryan, as we didn’t want to go through all the paperwork of registration, if there was nothing Ryan would get at the end that met his needs. After two meetings, they assured us they did, (what management official will ever tell you honestly they can’t serve you?) and to register with the Vocational Rehab wing of DR (before accessing Habilitation services).

We told them Ryan’s needs were unique. He had both significant abilities, and significant disabilities, and an appropriate counselor would have to be a creative one who could find unusual resources. They assured us they would assign Ryan the senior counselor in the office, who was supposed to be more skilled, with a lower caseload and thus time to sufficiently serve Ryan. We have found neither of these to be true so far.


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The first six months were spent going to 10 sessions of a Work Evaluation. Because my son has fine motor disabilities, they sent him to the biggest Rehab Hospital around, whom they had a contract with. They assumed what was most important was to learn about his disabilities, not his abilities, and so sent him to a hospital for a work evaluation. An Occupational Therapist, who is not licensed to give IQ tests, started with a 35 year old IQ test that is one of the worst, and rarely used at all. She told Ryan that he scored in the 5% (i.e. the range of profound mental retardation), and she concluded he needed to go to a sheltered workshop. Ryan gasped, started blinking his eyes, and asked to leave the room for a few minutes. He motioned me to go with him. When he’d recomposed himself, he wheeled in, looked her straight in the eye, and said, "If I can surf the Internet by myself, why do you think I need to be in a sheltered workshop?"

The OT conversed with Ryan while he expertly used the Liberator, yet she claimed he was profoundly retarded. Who do you think was profoundly retarded?

Some other tests she had given him were: l) sorting tiles by color. Why someone with fine motor difficulties, but average intelligence would be assumed to not know their colors, or want to sort tiles, I don’t know. But after sorting 435 correctly by color, without a single mistake, the OT noted in her report, only that "he failed to finish the task." I asked her how many he would have to sort correctly before she could figure out he knew his colors. Another test she gave him (obviously biased by her initial prejudicial conclusion that he should be in a workshop), was to do something with nuts & bolts. To Ryan’s credit, after doing about 25, he "accidentally" had a muscle spasm and spilled them all over the floor. Way to go Ryan! Brilliant strategy!


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But the worst failure, was they had no appropriate technology so Ryan could show them his Internet, and E-mail talents. They had only 15 year old computers, not even with the old Windows on them, that weren’t hooked to the Internet. So they had nothing but Ryan and my word that he had talents here, and you know how much they respected us. Ryan’s greatest vocational possibilities will always include technology and it is where his greatest talents lie already. To make him spend l0 appointments going through a supposed "Work Evaluation" that never got to his talents is criminal – blatant malpractice.

It took us two more meetings to get DR to agree that his IQ tests from school that showed low average intelligence, with some learning disabilities were much more accurate then their’s and to remove and destroy their’s as unfairly prejudicial to him. Ah, but then we finally got the skilled Senior Counselor. It took him three months to produce four drafts of the IPE document, with supposedly Ryan’s goals in it. He said he couldn’t merge the federal funding software, with the state funding software, with the new guidelines about how to write a customer friendly IPE to produce a draft that was even slightly logical. His drafts had no clear vocational goals, and only vague language under his goal that Ryan become a homemaker. (Ryan moved out into his own apartment in the middle of this, already meeting his goal.)

Finally, in desparation, I picked up his latest draft, treated myself to lunch, flipped it over, and wrote, in 20 minutes an appropriate IPE for Ryan with all the things he wanted that he had told the Senior Counselor four times. I then delivered it to the counselor, and within 48 hours we had a draft we could sign.

Of course, Ryan’s counselor still hasn’t gotten it to him to sign, and in the meantime, his Supervisor scolded me by VoiceMail that the services that were supposed to have been funded the week before (to secure a plane reservation to a training they had agreed to fund) couldn’t be done until the plan was signed, "because you know we have steps we have to go through"!


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The real trick in working with uncooperative systems is to change their minds, before they make you lose yours! I won’t bore you with the rest of the thrilling details. Let me just say that Ryan may be the first DR consumer in the state of California to be flown out of state for highly specialized computer/communication device job training, with DR paying for flight, hotel and registration next week. Congratulations Ryan on your perseverance in the face of such incompetence!

I will conclude by saying I believe advocacy to be the art of persuasive persistence past the third brush-off. Ryan and I would be happy to answer any questions you have or offer our assistance in the time we have left.

Thanks very much for listening. I hope what we shared was helpful and that it will assist you in "keeping on" to keep on trying to get what you need. Just remember, we are the ones who are supposed to be served. They have their jobs because of us. It is we who employ them. Thanks!


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 RESOURCES

1) PEC – Pittsburgh Employment Conference for Augmentative Communicators

This conference with 100 augmentative communicators occurs each August in Pennsylvania. The conference has been vendored through the regional center system. The registration can be paid by your regional center. The conference may assist financially with travel and hotel to some degree. The number of AC users rises every year. They have a Town Meeting where only those who speak with machines are allowed to talk for an hour and a half. Call SHOUT at (800) 668-4202 for information.

If you want to go next August, start talking to the Regional Center about it by February. Tell them you need to learn from the most advanced augmentative communicators in the country about what’s possible to do with a device, and ideas for employment. Get this goal written into your IPP, either at your annual meeting, or call a special IPP meeting to add this goal (your legal right).

2) ACOLUG – Augmentative Communicator’s On Line User’s Group – this is a free service sponsored by Temple University’s Center for Augmentative Communication. Augmentative communicators from all over the country talk to each other via E-mail. It’s fascinating. Call (215) 204-1356 information and instructions about how to go on line.

3) The only communication journal authored by an augmentative communicators is:

Alternatively Speaking

One Surf Way, Suite #237

Monterey, CA 93940

(831) 649-3050

4) The Alliance for Technology sites can sometime be of some help, though augmentative communication is usually not their strength. They are:

  1. Center for Accessible Technology
  2. 2547 8th St. 12-A

    Berkeley, CA 94710

    (510) 841-3224

  3. Sacramento Center for Assistive Techology

2115 "J" St. Suite 106 D

Sacramento, CA 98516

(916) 446-1778


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