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Handout for assistive_technology_and_

  1. 1. Assistive Technology and Neuro-Diversity (Cognitive Impairment) Customizing Assistive Technology for Persons Who Are Neuro- Diverse Assistive Technology (AT) has broadened choice and expanded independence for many people with disabilities. People who are Neuro-Diverse (who have brain injury, unusual brain chemistry, dementia, and other non-typical brain function) can also use AT to gain control over their lives. The key, as is the case with all AT supports, is to carefully match the support to the person by using the person's knowledge of themselves and the person's goals as the context for support. the focus is on the person, not the device. What is Assistive Technology? (AT) From the AT Act: "The term `assistive technology device' means any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities." "The term `assistive technology service' means any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device. Such term includes-- (A) the evaluation of the assistive technology needs of an individual with a disability, including a functional evaluation of the impact of the provision of appropriate assistive technology and appropriate services to the
  2. 2. individual in the customary environment of the individual; (B) services consisting of purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by individuals with disabilities; (C) services consisting of selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices; (D) coordination and use of necessary therapies, interventions, or services with assistive technology devices, such as therapies, interventions, or services associated with education and rehabilitation plans and programs; (E) training or technical assistance for an individual with disabilities, or, where appropriate, the family members, guardians, advocates, or authorized representatives of such an individual; and (F) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of individuals with disabilities." I would add that obtaining an AT device should be a no problem experience- cheap, simple to use, and including all warranties, training, and maintenance. What You Will Learn 1. A basic understanding of AT, exposure to some typical devices, ways of funding AT devices, and AT resources. 2. How AT supports independence for neuro-diverse information processing. 3. A framework for thinking about how to match a person's uniqueness to a device. 4. How all of us use AT to support our own independence.
  3. 3. Who Is Neuro-Diverse? Some people who do not have typical central nervous systems have claimed the name of "neuro-diverse", to reduce the impact that medicalization of disability has on their lives, and to value their uniqueness as individual human beings. How the CNS Processes Information Most of what the brain does is non-conscious. The CNS recognizes patterns and responds to them so quickly that we are not aware of what has been going on, but only see the results. For example, as you sit and read this handout, your non-conscious brain has prepared actions for you that you can do from where you are, in case you decide to do them. For example, if a glass of water is within reach, your brain will have already prepared the movements necessary for you to take a drink. Because of this non-conscious pre-planning, our decisions and choices over what to do seem effortless. The conscious brain is much slower and less effortless. Basically, we are only conscious of things that last longer than about 3 tenths of a second. It is also very difficult for us to remain conscious of slow activities that take longer than a few seconds to show movement. But our conscious brain allows us to use intention to change the likelihood that we will act in a certain way.
  4. 4. The overall purpose of our CNS is to anticipate the world around us, to guess accurately what will happen next. This purpose is the most important organizer of what we do. When our brain changes in its chemistry or function, these differences change what and how we anticipate, how we guess what will happen. Neuro-Typical and Neuro-Diverse Most of us use our CNS in the typical way that human beings normally develop neurological capabilities. To the extent that we do what is common in neurological development, we are Neuro-Typicals. To some extent, all of us have acquired differences from the typical in the way our brain works. Some people have lots of differences in the way their brains work, and they call them selves Neuro-Diverse to label those differences in a personally valuing way. The differences often result in some combination of less information processing in some areas and more information processing in others. While this presentation focuses on ways to boost the effectiveness of information processing, it is a fact that all use of AT requires the integration of strengths into the support. Examples of Neuro-Diversity 1. Learning Disability: There are a wide variety of information processing issues that are described as Learning Disabilities. They are typically identified in school, hence the label. They often involve difficulties in ignoring certain kinds of information, stably perceiving certain kinds of information, combining different kinds of information, or storing certain kinds of information. Examples include: i. Auditory Processing-has trouble understanding language against background noise, among other things
  5. 5. ii. Reading Problems-a wide variety of visual, visual tracking, phonetic, visual-auditory translation and other processing problems. iii. Right Hemisphere processing-Problems in social learning, including jokes, understanding how they appear to others, interpreting other people's social cues. iv. Attentional Problems-though not like other kinds of learning disabilities, attentional problems have been lumped in with LD. 2. Dementia: Although memory problems are the signature difficulty of dementia in most people's mind, almost any kind of information processing problem can occur. The striking problem with dementia is the progression of it. People with dementia can and do change dramatically in very short times. 3. Substance Abuse and State Dependent Meaning: Although SA is often thought of as a moral problem. both chronic use and withdrawal are, in the first place, brain problems. More than this obvious conclusion, SA and withdrawal alter the meaning that the abuser attributes to the world. State Dependent Meaning is a concept that helps us to understand this process of change in meaning that abusers experience. Imagine a laboratory rat given a small dose of sleeping medication, just enough to make the rat a little sedated. While the rat is affected by the drug, you teach the rat the difference between a triangle and a square. When the effect of the drug wears off, the rat will no longer remember the difference between the triangle and the square. If you give the rat the same dose of the same drug a couple of months later, the rat will suddenly remmber the difference between the square and the triangle. The memory is dependent on the chemical state of the brain at the time that the learning occurred. Another example: A boy begins heavy drinking at age 12. He continues to drink until his 30's when he quits and joins an AA group. He goes to his first AA meeting and finds that he is very anxious about talking to women, even being tongue tied. Because he did his adolescent social learning while drunk, he lost some of that learning when he quit drinking. The learning was tied to the chemical stated created by the alcohol. It would take a while to relearn social comfort and confidence in his new chemical state. 4. Mental Illness: Severe mental illness symptoms are state dependent phenomena of the brain. Individuals with sevee mental illness try to adjust and alter the symptoms through their behavior. That is, like anyone else with a neuro-diverse or a neuro-typical brain, they try to adapt their experience of life to their goals and dreams.
  6. 6. 5. Traumatic and Acquired Brain Injury: As you might expect, brain injury can affect literally every aspect of human experience and behavior. Regardless of the source of a brain injury, there is a common problem where well learned and automatic behaviors are fragmented or distorted. Any behavior which we repeat becomes more and more automatic over time. In another way of understanding, behavior becomes more non-conscious as it is repeated. When the automatic parts of behavior are disrupted, the person has no conscious idea of why they can no longer do the action. They can't access and use the non-conscious parts of the behavior. In order to relearn the behavior, a way for the person to succeed at the purpose of the behavior has to be found. 6. Autism: Although our society has become more aware of autism and the spectrum of autism experience, most people do not realize that the community of people with autism is the source of the concept of Neuro-Diversity. It is common for persons with autism to have difficulty managin certain sensory information, to have trouble with escalating anxiety, and to have narrow, but sometimes surprisingly skillful, development. In all of these examples, and many others, AT can help support and modify the person's control over their lives and their environment. AT and Independence As I have said earlier, the use of AT is in supporting the lives and dreams of persons who are Neuro-Diverse. During the development of the modern disability rights movement, three have been two major threads in the concept of independence, that developed on the basis of different historical experiences by the members of different communities:
  7. 7. The Independent Living Model The Independent Living Model grew out of the experience of persons with severe physical and sometimes cognitive disabilities. Its current public expression are Centers for Independent Living that help people finds ways to live independently in the community of their choice. The institutional focus of this community has been nursing homes, and the community's definition of independence and support is based on the restrictions and barriers that nursing homes create for autonomy. The best statement of the IL Model is: National Council on Independent Living: Ten Principles on Independent Living 1. Civil Rights – equal rights and opportunities for all, no segregation by disability type or stereotype. 2. Consumerism – a person ("consumer" or "customer") using or buying a service or product decides what is best for him/herself. 3. De-institutionalization – no person should be institutionalized (formally by a building program or family) on the basis of disability. 4. De-medicalization – individuals with disabilities are not "sick" as prescribed by the assumptions of the medical model and do not require help from certified medical professionals for daily living.
  8. 8. 5. Self-help – people learn and grow from discussing their needs, concerns and issues with people who have had similar experiences; "professionals" are not the source of help. 6. Advocacy – systemic, systematic, long-term, and community-wide change activities are needed to ensure that people with disabilities benefit from all that society has to offer. 7. Barrier-removal – in order for civil rights, consumerism, deinstitutionalization, de-medicalization and self-help to occur, architectural, communication and attitudinal barriers must be removed. 8. Consumer Control – the organizations best suited to support and assist individuals with disabilities are governed, managed, staffed and operated by individuals with disabilities. 9. Peer Role Models – leadership for independent living and disability rights is vested in individuals with disabilities (not parents, service providers or other representatives). 10. Cross-disability – activities designed to achieve the first five principles must be cross disability in approach, meaning that the work to be done must be carried out by people with different types of disabilities for the benefit of all persons with disabilities. The Recovery Model The Recovery Model of Independence grew out of the experience of persons with severe mental illness. The Model's current public expression includes a wide variety of clubhouses, drop-in centers, and support programs entirely opeated and governed by persons with severe mental illness. The institutional focus of the Recovery Community has been involuntary commitment and loss of rights in state mental hospitals and local hospital in- patient units. The Recovery Model grows out of this loss of autonomy. The best expression of the principles of the Recovery Community is: The 10 Fundamental Components of Recovery
  9. 9. Self-Direction: Consumers lead, control, exercise choice over, and determine their own path of recovery by optimizing autonomy, independence, and control of resources to achieve a self-determined life. By definition, the recovery process must be self-directed by the individual, who defines his or her own life goals and designs a unique path towards those goals. Individualized and Person-Centered: There are multiple pathways to recovery based on an individual’s unique strengths and resiliencies as well as his or her needs, preferences, experiences (including past trauma), and cultural background in all of its diverse representations. Empowerment: Consumers have the authority to choose from a range of options and to participate in all decisions—including the allocation of resources—that will affect their lives, and are educated and supported in so doing. They have the ability to join with other consumers to collectively and effectively speak for themselves about their needs, wants, desires, and aspirations. Through empowerment, an individual gains control of his or her own destiny and influences the organizational and societal structures in his or her life. Holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit, and community. Recovery embraces all aspects of life, including housing, employment, education, mental health and healthcare treatment and services, complementary and naturalistic services, addictions treatment, spirituality, creativity, social networks, community participation, and family supports as determined by the person. Families, providers, organizations, systems, communities, and society play crucial roles in creating and maintaining meaningful opportunities for consumer access to these supports. Non-Linear: Recovery is not a step-by-step process but one based on continual growth, occasional setbacks, and learning from experience. Recovery begins with an initial stage of awareness in which a person recognizes that positive change is possible. This awareness enables the consumer to move on to fully engage in the work of recovery. Strengths-Based: Recovery focuses on valuing and building on the multiple capacities, resiliencies, talents, coping abilities, and inherent worth of individuals. By building on these strengths, consumers leave stymied life roles behind and engage in new life roles (e.g., partner, caregiver, friend, student, employee). The process of recovery moves forward through interaction with others in supportive, trust-based relationships. Peer Support: Mutual support—including the sharing of experiential knowledge and skills and social learning—plays an invaluable role in
  10. 10. recovery. Consumers encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community. Respect: Community, systems, and societal acceptance and appreciation of consumers —including protecting their rights and eliminating discrimination and stigma—are crucial in achieving recovery. Self-acceptance and regaining belief in one’s self are particularly vital. Respect ensures the inclusion and full participation of consumers in all aspects of their lives. Responsibility: Consumers have a personal responsibility for their own self- care and journeys of recovery. Taking steps towards their goals may require great courage. Consumers must strive to understand and give meaning to their experiences and identify coping strategies and healing processes to promote their own wellness. Hope: Recovery provides the essential and motivating message of a better future— that people can and do overcome the barriers and obstacles that confront them. Hope is internalized; but can be fostered by peers, families, friends, providers, and others. Hope is the catalyst of the recovery process. Mental health recovery not only benefits individuals with mental health disabilities by focusing on their abilities to live, work, learn, and fully participate in our society, but also enriches the texture of American community life. America reaps the benefits of the contributions individuals with mental disabilities can make, ultimately becoming a stronger and healthier Nation. Both the Independent Living Movement and the Recovery Movement were born out of a sense of injustice, on the one hand, and possibility, on the other, by people who had been marginalized and stigmatized by global social stereotypes. But the historically separate development of the two movements has led to different cultures of social and personal empowerment, and these differences have made it more difficult than it need be for the two movements to effectively collaborate. AT is one of the areas which is very important to both communities.
  11. 11. Matching a Person and a Device There are 30,000 devices currently labeled as AT, and that inventory doesn't include all the personal inventions of individuals and their caregivers. There is no lack of possible devices. The hard part is to match the information processing profile of a person to any device at all in a way that improves personal control and choice. While we are going to review ways to match under functional areas like memory, there are also some basic principles to remember regardless of what you are trying to do: 1. Try to understand how the person wants to accomplish their goal. This will provide you with a rough model of the way information will be processed, and will make it much easier to filter the huge number of possibilities out there. 2. Choose the simplest, cheapest, and nearest solution. 3. Include warranties, maintenance, and training in your planning. 4. Always, always, always, try out the device before buying. 5. Be able to offer face to face support after the purchase.
  12. 12. Convergence There is a general trend in technology called "convergence", in which technological capabilities are concentrated more and more in single devices. If the devices that are targets of convergence are accessible, then people with disabilities can get fewer devices, maybe even just one ideally, and will be able to use the device to control other devices that they need for independence. This process could dramatically reduce costs, learning curves, maintenance, and so on. The current prototype of the convergent device is the iPad, and it is clear that many more similar devices will be coming out soon. At roughly $500, it is worth asking how much of a person's AT supports can be covered by such a convergent device. Faster, Better, Cheaper Google is working on a computer operating system (OS) called Chrome that they expect to begin releasing late this year. It would be used with a standard set of components for a netbook-like computer. Because the components are standard, and the OS uses online applications (the so-called "cloud"), the computer will boot in 2 seconds and will cost roughly half what the cheapest netbooks cost now (roughly $150-$200). At this point, this kind of computer (with a touch-screen) becomes the convergent device with standard accessibility software. More information about the OS is availalble at http://www.chromium.org/chromium-os. Generally Usable Cues Cues can be used to trigger behavior. They can be used on their own or as part of an integrated AT support system. The most common classes of cue supports include: • Lists (including checklists) ◦ Shopping List ◦ Directions ◦ Steps to complete a task • Visual Cues ◦ Color warning ◦ Posted reminder ◦ Photo
  13. 13. • Auditory Cues ◦ Word or phrase prompt ◦ Alarm ◦ Orienting sound • Tactile (touch) cues ◦ Orienting cue to allow more effective auditory or visual cue ◦ Guiding touch ◦ Orient to safety support All of these can be done without any special device. We have all used these to support our decision making, our daily life, our independence. We can take our experience into consideration when we are supporting someone else. Memory Reminders and Lists The key to supporting people with mild to moderate memory problems is the use of lists and cues. The earlier discussion outlined the broad way in which humans use lists and cues, and any of these techniques can be used to help a person remember something. You may remember a film called "Memento", in which the main character had a severe memory loss, and used notes, photos, and tattoos to help him find the killer of his wife. The reminders obviously have to have meaning to the person being reminded, and, thus, must be customized to some extent. Recall Early memory problems often show as difficulties recalling rather than a loss of a memory. Our central nervous system has many ways to find information, but we often settle into a single standard way to get at certain information. When that way breaks down, we may find it difficult to switch. Trying to trigger the retrieval by using another sense (even smell) or earlier or later information may trigger the memory. Also, recording a meaningful item so that it can be used to recall the entire memory is a common and useful way to support people.
  14. 14. Some Scenarios 1. Placing photos on a phone so that the person can call someone by pressing the face. 2. List of things to check before leaving the house placed at eye level on the inside of the door. 3. Taking pictures (camera on a cell phone, or around the neck) during a day of activities and then going over them that evening.
  15. 15. 4. Skull and Crossbones sticker on things or appliances the person shouldn't touch.
  16. 16. 5. Use checklist that is actually checked to assure completion of important steps Typical Devices • Medication devices: There are many, many devices for reminding people to take medication. They range from a few bucks to several hundred dollars. On the simple end are plastic containers that have labels for days of the week and time of day. You can typically pre-load them for a full week, and for 4-5 times per day. On the expensive end are devices that ring a bell when its time to take medications and only allow that particular dosage to be accessed. Some will transmit a signal or a text message to someone if the medication isn't taken within a certain time period. There are many in-between devices as well, and it is worth your while to pick a device that genuinely fits the individual's situation.
  17. 17. • Picture Phone: There are a variety of such phones and a couple of different kinds are pictured in this handout. These devices are handy for anyone in an emergency. It is far easier when your hands are shaking to hit a large button that will dial 911 automatically than it is to hit little numbers. Also, smartphone often offer a feature of having a picture with contacts, and a simpler auto-dial mechanism when you hit the contact picture. • Digital recorder around the neck: There are numerous digital recorders at all price points. In addition, most smartphones have a voice recorder and memo player that can do the same things as these single purpose devices. • Cell Phone App to find car in parking lot of mall: Smartphone apps are, in many ways, the AT of the future. One of the car finder apps is the best selling app for Android phones (The developer is getting $13,000 a month from a $2.00 app). Spoken Turn by Turn directions driven by the GPS device in the phone make following directions easier. There will be more such capabilities, such as GPS directions within buildings, and even houses. Really, it's only a matter of connecting a need with a developer. Though I don't believe it exists yet, such an AT development effort would make a great non-profit venture.
  18. 18. • Water level alarm for bath tub: Another device that might have appeal to many people, especially driven, busy ones. There are many devices that do this kind of signaling, and there are automatic ones that attach to the tub or faucet. Also, more and more tubs are coming equipped with level shut-off devices.
  19. 19. Attention Attention is a function that results from integrating all of the monitoring skills we have and the orienting capabilities of our senses. At the basic end, think of a light flashing off to one side of your head, or a sudden sound. You will automatically turn toward the stimulus. Type Attention functions on a continuum from very broad in scope, like the reaction to a sudden and new stimulus in the environment, to very narrow, when you are deeply involved in a television mystery, for example. People vary in terms of their "temperament" for attention, from a person who has
  20. 20. severe Attention Deficit Disorder to a person with autism who can focus on changing lights for hours. In general, anxiety can both destroy attention and focus it on one single object or person or event. Fatigue In the brain, there is only a certain amount of attention, just as there is only a certainly amount of energy generally, and when you run out of attention, you are in a state of fatigue. In order to restore your attention, you must rest. You can't work through brain fatigue. It is common after brain injury to experience functional fatigue when the parts of the brain that are damaged are used for too long. "Too long" can be 10 seconds if the area responsible for the function is severely damaged. Once fatigue sets in, further efforts in that area will produce emotional symptoms that escalate and can produce loss of control. Some Scenarios 1. Remove visual distraction in a room, including pictures, busy wallpaper, and close curtains.
  21. 21. 2. Run a white noise generator at night to support sleep. Simply Noise is a web site where you can produce white noise to prevent distractions. Go to http://simplynoise.com/ to use. 3. Remove or cover mirrors, deaden echoes with carpet or wall hangings
  22. 22. 4. When using a computer, simplify desktop, and reduce lights in room, to improve focus on screen. The image is from DarkRoom which fills your computer screen with a simple word processor. Go to http://they.misled.us/dark-room to download. Typical Devices • Alarm reminders. there are zillions of these devices. Choose one that is convenient and easy to use.
  23. 23. • Hand-held, computerized, sequence of task step pictures. The picture below is a step in a recipe. These kinds of apps will proliferate over the next few years for smart phones. There will be ones for many hobbies, complete with step pictures and videos. • Recorded Reminders: This version is a smart phone app. Others are mentioned elsewhere in this handout. It records messages tied to a reminder time.
  24. 24. • Checklist (no more than 7-9 checks). Checklists are a generally useful tool for following steps. There is a current craze about them because the The Checklist Manifesto, a book you can check out at http://amzn.to/d07Xke.
  25. 25. • Social Supervision (the teacher presence effect on attention): The presence of another human being automatically improves task focus. Often, the attention and information processing abilities of married couples become automated and intertwined over time. If one spouse dies, information procesing deteriorates as well, and not just because of grief. It also declines because the well practiced ways of getting through the day no longer work.
  26. 26. Orientation Orientation in humans is a complex process of grasping the meaning of context. It isn't simply knowing where you are, but also knowing how you related to the objects and people in your immediate environment, and knowing how your context will help or hinder you in getting where you want to go (both geographically and socially). Our brains use internal monitoring to constantly update our understanding of our internal and external context. Problems in Orientation often arise from failure of these monitoring skills. But problems can also arise because a person becomes anxious. In the film "On Golden Pond", Henry Fonda suffers disorientation and anxiety while trying to walk a path in the woods. He looks around himself and does not
  27. 27. recognize where he is, and becomes very anxious, which increases his sense of disorientation. In reality, we don't use every sensory detail of the environment to move from one place to another. We use specific points along the path to tell if we are going in the right direction. In other words, we don't follow a videotape when travelling, we note intersection road signs. Once you believe that you have a problem, you can begin to judge your orientation on parts of the trip that you never really paid attention to. This triggers anxiety which in turn further disorients you. Location and Orientation Where we are is equal to a set of GPS coordinates. Our Orientation has to do with how we interpret our location, and that is based on identifiable cues in the world and personal knowledge. Often, as in walking a path we have never taken befoe in the woods, our orientation is to cues we can't see and the route we used to get where we are now. Following Directions Directions are never a perfect replica of the journey we are to take. Instead, they are highlights that for one reason or another are easy to sense. We follow directions by moving from one highlight to the next. If we get confused we don't figure our our absolute position (or at least we didn't until GPS devices became so common). Instead we retrace our steps and look for a recognizable highlight to re-orient our selves.
  28. 28. Confusion (Disorientation) Confusion is difficulty in interpreting the cues in the immediate environment. It can be an unawareness of cues or a misinterpretation of them. Most people with dementia, for example, are confused about where they are, but the place they believe they are is a real enough kind of place. Although such confusion is called confabulation (we are making up our location), we all confabulate. It is just that we use more cues in doing so. A person with dementia uses very few cues to figure out where they are, and then assumes what would be true if they were right. Anxiety has a powerful effect on confusion and disorientation. In fact, anxiety can create a sense of disorientation even when there is no failure to recognize or interpret cues. Some Scenarios 1. Using pictures to label rooms in a house: Labels are easy to print off the internet. You can use both text and picture together as well. For a person's room, you can use a printed photo.
  29. 29. 2. Putting transparent acrylic doors on cabinets: The picture below is pretty classy, but transparent acrylic works as well.
  30. 30. 3. Using a turn by turn GPS device: With the advent of GPS in cell phones, a wide variety of possibilities can be included in any smart phone. The picture below contains two versions of turn by turn directions in an Android smart phone.
  31. 31. Typical Devices • GPS devices: There are many GPS devices besides smart phones. The device below is intended to be used at the spot you want to return to. It records your trip and can tell you whether you are getting closer to your final destination. •
  32. 32. • Use of curtains or carpets to deaden sounds: Sound deadening is a commercially viable enterprise, so there are many different versions and types on the internet. Watch those installation costs! • Transparent shower curtains in a well lit bathroom: There are some choices here as well. This one seemed like the best of both worlds, but there are other designs. • Motion detectors that, for example, turn lights on and off. There are also a wide variety of motion detector sysems, varying in complexity, from ones that turn on lights outside when a dog goes by, to ones that speak a specific recorded message when movement occurs. They can also be used in the house with different messages or actions when triggered.
  33. 33. • Universal remote for entertainment devices: A lot of these as well. This one has big buttons and can sit on a table and not move. Personal Safety Personal safety is at the core of personal independence. However. it is more important to personal freedom to choose how safety will be addressed in one's life than it is to be "made" safe by segregation or restriction. The focus here, as in all use of AT, is personal choice. Bathroom Bathrooms can be dangerous because of hot water and slippery surfaces. There is also the possibility of eating non-food substances: • Label shampoos, lotions and other non-food items, preferably with both a picture of their use and their name. • Get unscented items. • Use a color indicator of hot water in the tub or shower, such as a color changing mat. • Use a water wand to prevent water from over-flowing • Put grab bars at various locations throughout the bathroom • Remove throw rugs from slippery floors
  34. 34. • Consider outdoor carpet in the bathroom • Rubber mats that stick to surfaces • brushes with soap in them for washing • Shower chair • Shower head on hose Kitchen Kitchens have heated surfaces and foods, glass objects, hot water, knives, and other hazards. • Eliminate glass objects or replace with corning ware • Use toaster ovens or microwaves instead of stoves • Label cabinets • Replace cabinet doors with transparent acrylic ones • Make sure a smoke alarm/CO alarm is in the kitchen near the stove • Plenty of hot pads, including gloves • Use lazy-susan instead of passing large bowls or plates • Use sturdy dining table with 4 legs instead of center based support • Dishwasher instead of hand washing • Phone in kitchen Home Shadow common daily activities and look for risky behavior and hazards. • A Personal Emergency Response System (PERS) is a necessary tool. People who have a system are only 10% as likely to end up in a nursing home as people without. • NO THROW RUGS! • Smoke/CO alarms through out the house • Rubber treads on stair steps • Heavy duty stair rails • Cell phone on person • Use computer video for daily contact (i.e., Skype) • Lower or raise bed so person can comfortably sit with feet on floor • TV watching chair should have organizer right next to it and should have a device to assist getting up Outside Chores are a common source of injury. • Barter for chores with person's strengths • Electric rather than gas lawn and garden appliances
  35. 35. • Cell phone on person • No Ladders! • Hire snow removal or barter • Have PERS on person Some Scenarios 1. Have lights turn on automatically when it is dark or the person moves from room to room, or goes outside. The picture is from the Helios system that will turn lights on and off as the person moves in and out of rooms, as well as other environmental control tasks. 2. Use web cam to check on person each morning (be respectful of privacy!) The picture is from a webcam called "Watching Paint Dry".
  36. 36. It has accompanying Music. There are webcams everywhere these days. Check out the current weather in Lansing by webcam at http://www.instacam.com/showcam.asp?id=LNSMG&size=S 3. Build relationships with neighbors: If neighbors know you they'll watch out for you. Try a backyard barbecue as a friend starter.
  37. 37. 4. Have dog for companionship and protection. The more the merrier. A neighbor can walk.
  38. 38. Typical Devices • PERS: There are many types. If you push the button, it signals someone or a busiess to check on you. Some allow you to transmit speech as well.
  39. 39. • Ablelink style communication, alarm system" Ablelink creates software that allows for many of the functional supports described in various parts of this handout to be done on a desktop or handheld computer or smart phone. The software is expensive and you have to have the device, but the software is quite remarkable. Go to http://www.ablelinktech.com/ for more information.
  40. 40. • Door opening alarms: There are an awful lot of door alarms. I would look for price points and convenience.
  41. 41. • Water control devices: Pictured here is a water level control device built into the bathtub. There are wands that attach to faucets, and a host of other devices.
  42. 42. • Temperature indicators: Here is a cute one that has a digital readout. There are many types of these, some that change color. • Fall detection sensors: There are many types of these. This particular one is for the iPhone. Because smart phones contain accelerometers and GPS devices, they can be remarkably good at detecting falls. The
  43. 43. future of fall detection.
  44. 44. Mood and Symptom Management Sleep Sleep is the single most important variable in mood, symptoms of mental disabilities, energy level, and general quality of life. Time and effort invested in assuring high quality sleep is never wasted and will reduce the number of interventions that need to be made in other parts of the person's life. • Stop caffeine • Daily exercise • Use night light • Use noise generator (i.e., fan) • Establish routine of relaxation for several hours before bed • Learn meditation • Nightly massage • Reading, or listening to, books • Music or automatic TV turnoff • Establish medication taking times in view of their effect on sleep Stress Stress is different than variety. Good living requires variety in stimulation and activities. A person should typically be alert and ready to do an activity if the opportunity comes up. If heart rate is rising, shaking hands, anxiety, the person is under stress. If "couch potato" syndrome, person is trying to recover from stress. • See ideas for Sleep • Plan daily activities • Rehearse stressful, but necessary, activities • Establish routine with small variations • Have several "fun" activities every day • Break up log trips into smaller chunks • Do some exercise after stressful experience
  45. 45. Depression/Agitation Changes in your basic energy and activity level are normal up to a point. Sometimes, though, the volume is too high or low for long periods. Medication should be examined, but avoid use of anti-psychotics for agitation. The use of these drugs is dangerous in older people, and is typically done because it is easy. But, these drugs literally remove meaning from life, and make it more difficult to appreciate positive and negative experiences. Look for another way. • Exercise is good for both depression and agitation. Exercise can be a walk together • Routine is necessary to maintaining energy at a usable level • Examine experiences of depression and agitation for triggers. Once you understand a trigger, you can manage it. While the cause may be biochemical, the actual level can be changed by surprising things. • Believe someone when they say that something raises or lowers their activity level. Hallucinations Demystify hallucinations. Everyone has them eventually, many people when they were children. Tell the person that hallucinations are not dangerous. The anxiety that hallucinations often trigger both in the person have them and people around that person cause more disorientation and loss of the sense of control than the hallucination. There is an International Society of People who hear voices, and put up with stigma and discrimination as a result. • Use sensory interference, as desribed under Attention • Ask the person to check with you when they think they might be hallucinating • Exercise will work • Sit and drink tea and talk • Wait for the intensity of the hallucinations to drop off, and do something else in the meantime
  46. 46. Some Scenarios 1. Combine music and meditation 2. Eat regularly to avoid blood sugar issues
  47. 47. 3. Avoid alcohol, caffeine, drugs
  48. 48. 4. Stop daily activities at least 2 hours before typical sleep time, and shift to low energy. Hi-Ho, Hi-Ho, it's off to sleep we go!! Typical Devices • iPod: and the many, many other devices that can play music, newscasts, videos, short movies and long ones-You name it. Whatever works for you.
  49. 49. • Smartphone: The newer smartphones can do all of the iPod things, and I expect to see more and more relaxation apps in the near future.
  50. 50. • Exercise machine: Exercise is necessary, necessary, necessary. Just adjust the approach to the person's functional abilities. Ask a PT or an OT for advice.
  51. 51. • Reminder for short meditation/breathing exercise every hour: Any device will do as long as it can handle a number of alarms. Some will tell you what to do. You can 3 of one kind of activity, 4 of another, and so on. Integrating AT Supports Planning AT for the Whole of Life Over time, you will build up ways that AT fits into a person's life. As you do this, you will find that having many devices for many different purposes doesn't work. It becomes time for the person and you to look at broader solutions. Also, each experience of support and independence teaches it's own personal lessons about what works and what doesn't. Record the lessons. • Ablelink Video-Use of technology to support a number of processing problems at once See link for more info" Living the Smart Life DVD http://bit.ly/9RSeNU
  52. 52. • Computer control over home environment: You can hookup anything electric to a common control system and change everything at once instead of going around the house trying to change individual items. There are sensors for everything, and they can all be linked to your computer.
  53. 53. • Remote control over computer: A relatively simple way to make use of a computer in a person's home is to use G-Bridge to connect your computer with theirs, and use wireless web cams to monitor doors or areas where a fall might occur. There are also systems that tie GPS to the internet so that you can track a person's movements if they have the device on their belt or around their neck.
  54. 54. Future of Health Related Support Sensors and remote telecommunications will change the way we receive medical services over time. Sooner or later, we will all be wearing sensors that detect and record our health status as we go through daily activities. Video chat at high definition will allow those sensors to trigger an alarm and instead of immediately running to the hospital, we might have a visual exam by Internet. As these technological tools become part of health care, we will also use them for other purposes, like social interaction, monitoring while respecting privacy, game playing, planning activities and events, and so on. For example, see this article on belt-worn health sensors at http://bit.ly/ c09Fuu. Beyond This Presentation Resources Nationally, there are a huge variety of resources around AT, so many in fact, that it is daunting to find what you are looking for. The Resources listed below focus on those that are generally useful.
  55. 55. The Job Accommodation Network: Find the site at http://askjan.org/. JAN originally developed to help employers figure out what accommodations to use to support employees with disabilities. the network has focused a lot of energy on AT, and is generally helpful with developing an AT strategy. ABLEDATA: Find the site at http://www.abledata.com/. The ultimate directory of devices, Abledata now contains over 19,000 device descriptions. When you want to see the variety of options available.
  56. 56. Michigan Loan Funds: Find the Site at http://www.michiganloanfunds.org/. Operated by United Cerebral Palsy of Michigan, the loan funds offer lower interest rates, and more flexible terms for devices that increase personal independence for persons with disabilities, including children. There is no bottom limit on loans, and the top is $30,000. Michigan Disability Rights Coalition AT Project: Find site at http://www.copower.org/At/index.htm. MDRC has operated the Michigan AT project since 1997, and the Project includes many more activities than I can discuss today. You should visit and get a better grasp of the local projects, newsletters, and resources that the AT Project has created and maintains.
  57. 57. AT Xchange: Find the site at http://www.atxchange.org/v3/home.php. ATX is a "classifieds" web site for used AT equipment, some free, some at low cost. Once you create an account, you can trade, buy, or sell. Michigan Protection and Advocacy Service AT Project: Find the site at http://www.mpas.org/AdvocacyServices.asp?TOPIC=10922. MPAS helps with information and advocacy around AT rights issues, and is a partner of MDRC in our AT Act activities.
  58. 58. UCP Upper Peninsula AT Center: Find this site at http://www.ucp.org/ ucp_localsrv.cfm/87/8293/8305/1104. The Center provides AT solutions for the entire Upper Peninsula of Michigan, and UCP and the Center are partners in our AT Act Activities. National Assistive Technology Technical Assistance Project: Find the site at http://www.resnaprojects.org/nattap/RESNA.html. A list of all State AT projects and all their activities. A good resource when you can't find an
  59. 59. answer in Michigan. RESNA: Find the site at http://resna.org/. A resource for professional information nationally. Find an assessment professional or learn how to build a career in Assistive Technology. Aging In Place At Home: Find the site at http://www.aipathome.com/. A good starting point for making any home livable by a person of any age who
  60. 60. has a disability, and the first step to staying out of a nursing home. Family Center for Technology and Disability: Find the site at http://www.fctd.info/. Information and resources for school and home support of independence by children with disabilities. Your Presenter's Personal Information
  61. 61. Name Norm DeLisle Position Director, MDRC Email ndelisle@prosynergy.org Twitter http://twitter.com/mdrcngd Norman Learned at http://normlearned.blogspot.com/ Blogs LTC Reform at http://ltcreform.blogspot.com/ The Recovering Life at http://therecoveringlife.blogspot.com/ Facebook http://www.facebook.com/norman.delisle?ref=profile MDRC FB http://www.facebook.com/pages/Michigan-Disability-Rights- Page Coalition/134406553753 Web page http://www.copower.org/ http://www.linkedin.com/ Linkedin profile?viewProfile=&key=21212949&locale=en_US&trk=tab_pro FriendFeed http://friendfeed.com/normandelisle Ning http://michpeermentor.ning.com/ Core Take-Aways: 1. AT supports independence and choice for people with disabilities 2. Focus on how a person processes information, not on the device 3. Remember to include warranties, maintenance, and repair 4. Always try out a device, so it doesn't end up in the closet 5. We all use AT to help us negotiate our way through life
  62. 62. References Making Up the Mind: How the Brain Creates Our Mental World by Chris Firth at http://bit.ly/ccH9gx Chris Firth has written a superb and dryly amusing description of how our brains make the world we experience and in which we live. The new imaging technique of functional MRI has allowed neuropsychologists to see the brain doing stuff in real time, and what these experiments reveal is startling and "brain-changing". Universal Design for Learning (UDL) Videos from The National Center for UDL at http://bit.ly/bvFAZ0 UDL isn't just for schools anymore. The basics of UDL are useful in any AT activity, allowing easier brain process for everyone. Worth a look, and the videos are easy to watch. The Illustrated Guide to Assistive Technology and Devices by Suzanne Robitaille at http://bit.ly/bvFAZ0 At the price ($14.00 on Amazon), the best and most accessible introduction to AT and decision making I've seen. Worth keeping around, as well, since it is a good reference. Universal Design for the Home by Wendy A. Jordan at http://bit.ly/ 8Y8J4H The best way to solve a problem is to never have one. This book needs a DIY person, but has many ideas for making it easier to live in the home you have. Stuffed with ideas. Tricare's Computer/Electronic Accommodations Program at http://bit.ly/dA6EWU From our Veterans Home Care program, a one stop site for devices broken out by general cognitive support purpose. A good place to check befoe going into Abledata's massive directory. Last Thoughts "To the cognition of the brain must be added the experience of the soul." -Arnold Bennett
  63. 63. “When you take a person with dementia and you put them in a car and drive them for four hours to come for an appointment, they're not really at their best when you assess them." -Andrew Kirk "Nothing About Us without Us." -Many authors and versions "A true friend knows your weaknesses but shows you your strengths." -William Arthur Ward "Disability is an art. It’s an ingenious way to live.” -Neil Marcus "I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" -Dr. Seuss ©Copyright 2010 Michigan Disability Rights Coalition Assistive Technology and Neuro-Diversity by Norm DeLisle is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.