Tuesday, December 6, 2011

Tips for giving assistive technology gifts

Wonderful and informative article about giving assistive technology as gifts.  Although the author is writing about visually impaired gifts, their advice applicable to those with ALS that have communication or physical limitations. 

From: Accessible Insights Blog

For any of my readers who are not visually impaired, you may be wondering if giving a  friend or loved  one who has vision loss a gift of low vision    equipment, (or "assistive technology" as it is called),  is an appropriate gift.  I can understand your concern.  On the one hand, some of the best gifts are those that make someone’s life better or easier, on the other hand, you may be afraid that this type of gift might be received in much the same way as a book  about dieting might be.  In other words, you don’t want to insult someone, especially if  the recipient is really struggling with the emotional aspects of their vision loss.  You might be worried that giving this sort of gift would be acknowledging circumstances that the individual him or herself may not yet be ready or willing to acknowledge. 

While you may be thinking that buying a friend this type of gift is about as exciting as giving a housewife a vacuum cleaner, consider your intention along with the particular needs of the recipient to make it a gift that keeps on giving.  Here are a few tips that may help you to identify the right gift for your special recipient.

Educate yourself.  When it comes to assistive products, there is no one size fits all solution.  You may not realize, for example, that different types of vision loss manifests differently in different people.  Someone who has retinopathy does not literally see the world in exactly the same way as does a person who has macular degeneration.  Therefore, it might be a good idea to take the time to identify the specific needs of your gift recipient.  Learning a bit about how their particular disability affects them in day-to-day, real-world ways can help you to choose the most practical solution that is most effective and beneficial for them, as opposed to the latest whiz-bang gadget or gizmo
Examine the packaging.  If you are giving a gift to a senior or a person who has a physical disability which may make it difficult to manage the product packaging, the impact of     your gift may be lost if the recipient can’t get to it.  Look for "frustration free" packaging, or simply prepare the gift in advance if you will be unable to be present at the time it’s opened.  remove plastic ties or shrink wrap, slice open the bubble plastic so that the container is easy to handle  (you can secure it with easier to manage clear tape), and check out the included instructions.  If the gift recipient has low or no vision, and the instructions are printed on paper, your recipient  will not be able to enjoy the gift if they do not possess the technology to scan and read the directions.  Take the time to record the instructions on tape, or provide them in some alternative format so that it is accessible to the recipient.  This extra step is part of the gift, and will be most appreciated.   

Add the value of you.  If your friend or loved one is having a hard time coping with their changing circumstances, make the discovery of assistive technology a shared experience.  Learn alongside your loved one.  This will not only reduce the intimidation factor of what they perceive to be a complicated process, but the shared experience will benefit you both 

Ask someone who would know.  Do you know someone else who has the same disability as your gift recipient?  If so, ask their opinion.  Is this the best version of this particular product?  Is it compatible with their current technology or equipment?  Is the product or gadget as effective as you believe it could be?  Will it do what the manufacturer says it will do?  Is there a more or less feature-rich version of this gift that would be more appropriate?  If you do not know someone who shares your loved one’s disability, go online and seek accessibility consultants or experts who will be glad to help.  there is far more information available than you may realize.  If you’ve come this far, it’s easy to continue to seek help.  Just type "assistive technology gifts" or "low vision aids" into your favorite search engine, and explore the results.  You’ll be amazed at the choices.  You might even discover that instead of buying an expensive gadget, there are innumerable ways to make existing items more accessible for people with disabilities.  Sometimes, keeping things simple can be the best solution of all.

One word of caution.  When it comes to the notion of improving a person’s quality of life, ask yourself if you are really the best judge of what that is.  Sometimes, there can exist a very fine line between the desire to help and the desire to control.  Consider, for example how you might feel if someone concluded that your life was inadequate, and imposed all sorts of solutions that you did not want or need?  What if, say your real estate agent decided that you didn’t need such a big house, it is unnecessary, and therefore you will only be shown one bedroom houses?  Keep in mind that there are still people out there who fail to see the necessity of a computer or a cell phone.  As foreign an idea as that may be to you, they do not feel their life is any worse for the lack.       

On the other hand, a person who has a disability might really appreciate your contribution to what would otherwise be a purchase that is financially prohibitive.  The market for assistive tech gadgets is far smaller than that of the market for say, the latest hand-held device that has an "i" in front of the name.  Consequently, assistive products specifically for people with disabilities can be far more expensive than the mass-market counterparts.  If you are considering a gift certificate, check out the online retailers who specialize in these products.  Most offer gift certificates, and will even accept phone orders, which may be preferable for someone who does not yet have an accessible PC. 

Good communication and a little extra investigation will yield the best gifts that your friend or loved one will use and enjoy, and you may give the best gift of all…the gift of love of learning, new experiences and fresh insights as to the exciting possibilities that await.  

  • How technology can connect doctors and caregivers

    Caregivers want technology that can help facilitate the care of loved ones. Not only can physicians provide those tools, they also can benefit from them.


    By Pamela Lewis Dolan, amednews staff. Posted Dec. 5, 2011.

    Pulmonologist Scott Manaker, MD, PhD, said that when elderly patients come for their first visits and are accompanied by family members, he begins the conversations with the relatives by determining when and how he can share information about the patients' health.

    With more than 29% of the U.S. population acting as a caregiver to someone else, chances are that physicians eventually will be faced, as Dr. Manaker is, with questions about how they can work with caregivers to ensure the health of the person receiving care.

    The majority of caregivers spend an average of 20 hours per week providing care, in addition to holding down a full-time job. To help make things more efficient, many are turning to technology that not only will supplement the care they are providing in person, but also will help them stay organized and connected with the care recipient's physicians or fellow caregivers.

    The more physicians can help get the needed technology to caregivers, experts say, the easier those caregivers' lives will be. Likewise, the more engaged the caregiver is, the better the outcomes for patients.
    "I find great relief and comfort when the family is involved," said Dr. Manaker, associate professor of medicine at the University of Pennsylvania Medical Center. Having a caregiver working as an ally has made it easier to talk to aging patients facing tough decisions, especially patients who are reluctant to give up their independence, he said.

    Gail Hunt, CEO and president of the National Alliance for Caregiving, said all physicians should be having conversations with caregivers on how they best can support each other. Both physicians and caregivers have valuable information that can help the other one meet their obligations to the patient.

    What caregivers want

    A study published in January by the National Alliance for Caregiving and UnitedHealthcare found that caregivers think technology can help save time (77%), manage the logistics of caregiving more easily (76%), increase feelings of effectiveness as a caregiver (74%), reduce stress (74%) and make a care recipient feel safer (75%).

    "If we have a caregiver who is unable to provide care, or is over-burdened, or overly stressed out with care, there's a much greater likelihood that the patient will need to be placed in some sort of facility, which is much more expensive and costly," said Sarah Czaja, PhD, scientific director at the Center on Aging at the Leonard M. Miller School of Medicine, University of Miami.

    Caregivers spend an average of 20 hours a week providing care.
    Czaja, who has been involved with several research projects aimed at providing technology to caregivers, said caregivers often don't know about resources that may help them.

    The help caregivers are looking for can be simple moral support through online support groups, ways to communicate directly with the doctor electronically, or more advanced technology that can be the eyes and ears watching over that patient when they can't.

    Physicians carry the greatest influence in prompting caregivers and patients to try a new technology or tool, according to the National Alliance for Caregiving survey. Among the issues that technology is helping to make easier to manage:

    Coordination of care. Care recipients generally have more than one physician treating them, so caregivers are tasked with making sure not only that the care recipient makes it to all scheduled appointments, but also that those appointments are productive.

    Seventy-seven percent of caregivers want access to the electronic records of the care recipient to obtain information such as health history, medication lists and test results, according to the NAC survey. Many physicians with electronic medical records have online patient portals where patients or their caregivers can download this information. With this access, caregivers can share records from one physician to the next.
    The ability of caregivers to log onto the system and retrieve lab results or care records also means better practice efficiency, Dr. Manaker said. There are fewer phone calls and staff time dedicated to tracking down that data, he said.

    Nearly 30% of the U.S. population acts as a caregiver to someone else.
    When Dr. Manaker meets caregivers for the first time, he makes sure patients make all necessary authorizations to have information released to caregivers.

    He has had uncomfortable conversations with well-meaning relatives who want to obtain information to help their loved one, except that certain caregivers were never authorized by the patient to receive the information.
    Whether the caregiver is accessing information over the phone, by email or through a patient portal, physicians must do their part to make sure that exchange complies with the Health Insurance Portability and Accountability Act. Not only does the physician need to obtain permission to share data with caregivers, but the data must be shared securely. Though emailing may be convenient, if it's done on an unencrypted or open network and identifiable information is being sent about the patient, the physician is at risk of a HIPAA violation.

    Medication compliance. Studies have found that chronically ill patients are noncompliant with their medication about half the time. Some can't afford to fill their prescriptions, but others don't remember to take their medication. For physicians, caregivers can be the best resource they have in ensuring that the medications they prescribe are actually taken by the patient.

    With a more accurate assessment of medication compliance, doctors will find it easier to determine the effectiveness of a prescribed treatment in case changes are needed. Medication tracking can be easy for caregivers living under the same roof as the care recipient, but for the more than 50% who live elsewhere, medication compliance is trickier. There are several tools on the market that physicians can suggest.
    Seventy percent of caregivers not living with a care recipient say a system that would remind the patient when to take medications and dispense pills at the right time would be beneficial, according to the National Alliance for Caregiving survey. There are tools on the market that send audio reminders to the patient to take medications. An alert is sent to the caregiver if a pill hasn't been taken. There also are smart-pill technologies in development that would send alerts to caregivers or physicians when a pill is swallowed.
    Chronically ill patients are noncompliant with their medication about half the time.
    Tools that require action on the care recipient's part must be affordable and easy to use, Hunt said. Physicians can play a great role in finding the right tools for these patients and their caregivers.
    Remote monitoring. The longer patients can stay at home and out of long-term-care facilities, the better. Often the key to keeping patients at home is the ability to monitor their conditions between physician visits.
    Seventy percent of caregivers said remote monitoring devices that collect data such as vital signs, blood pressure and blood sugar levels, and send that information to physicians or care managers for analysis, would be helpful, according to the National Alliance for Caregiving survey.

    Adam Darkins, MD, chief consultant for the Dept. of Veterans Affairs Office of Telehealth Services, said chronic patients generally are not seen more than once every few months in a doctor's office. "It often happens that in the clinic, all is well, but then they deteriorate two weeks before, or six weeks after [the visit]. And when that happens, they get their right to an urgent appointment by being an [extreme case]," Dr. Darkins said. The VA decided: Instead of putting all the resources into a clinic visit, why not put them into monitoring people?

    "A key piece to doing this right from the start was making sure the caregiver was involved," Dr. Darkins said.
    The Veterans Health Administration is often viewed as the gold standard when it comes to telemedicine and home monitoring, Hunt said. Through remote monitoring, the VA has reduced the days in the hospital by up to 30%, according to Dr. Darkins, and has increased patient satisfaction by up to 70%.

    With the right technology, caregivers can feel empowered to take on the task of monitoring a patient, but there must be an assessment of the caregiver's ability to care for the patient. That role of assessing the caregiver and making sure they understand their role is often one that falls on the physician.
    Finances are often barriers with this type of technology, both for caregivers and physicians. If physicians were to offer it, they would need staff to manage it. At the VA, the system has a dashboard-type display with a red flag system. A care coordinator within the physician clinic monitors those flags for needed interventions. Another option for physicians is educating caregivers on how to recognize red flags on their own if the monitoring is being done manually and how to know when to call the physician's office for advice.

    Explaining technology

    Although cost is often cited as a barrier to physician technology adoption, the same is true for caregivers. But despite their concern about costs, nearly half of caregivers surveyed by the National Alliance for Caregiving thought technology could help save money.

    Hunt said physicians should educate caregivers on technology and its benefits and help them understand that many technologies are affordable.

    Of those surveyed, 88% said that if a health professional involved with the care of the patient explained that the technology would help, caregivers would be more likely to try it. And 80% said they would be more likely to try a technology they were shown how to install and use.

    "Technology has a lot of potential ways to aid both the caregiver and the physician in terms of management of care," Czaja said. "They must work together to identify the options that work best for everyone."


    ACOs could change caregiver role

    For many caregivers, one primary responsibility is coordinating the care of their loved ones. They schedule appointments with each specialist and manage the patient's medical records so each doctors knows what the other one has done.

    But that role could change if the care recipient becomes a patient of an accountable care organization.
    Under the ideal ACO model of shared responsibility for the patient, care coordination would fall on the organization acting as the head of the ACO, or the patient's medical home, which would be responsible for the care plan of each patient. But more work is needed to ensure that patients remain at the center of those plans.

    James Lee, MD, medical director for hospital efficiency at the Everett (Wash.) Clinic who headed that organization's ACO demonstration project, said that in an ideal system, a precise care plan for each patient would be crafted by team members at the patient's medical home. That plan would be transmitted to every member of the patient's care team, including the caregiver.

    Instead of a caregiver taking on the responsibility of reconciling the medical records of each physician the patient sees, all the records would be in a shared electronic medical records system and viewable by the caregiver. The National Quality Forum, Dr. Lee said, "recognizes IT as the glue that ties caregivers and patients and physicians together." The challenge is to "improve the IT piece so that it is transparent and bi-directional."

    Dr. Lee said that even though ACOs have the technology in place that would allow the care plan to be visible to all parties within an EMR, "today, we don't have a consensus on what patient-centered care plans should look like."

    "We have made some progress, but a clear care plan will be necessary to give caregivers more information," he said.

    On Oct. 20, the Centers for Medicare & Medicaid Services released the final rule describing the Medicare Shared Savings Plan program being launched by CMS in 2012. As many as 270 ACO networks are expected to participate in the program that will allow them to share bonus money for achieving certain cost-saving goals.

    Caregiver access needs to follow HIPAA

    Caregivers need access to information to make informed decisions. But regulations in the Health Insurance Portability and Accountability Act don't make exceptions for caregivers, even if their intentions are good, if they have no authority to view a patient's medical chart. Therefore, physicians must be careful when working with people seeking information.

    The best step physicians can take in ensuring patient privacy is to receive express consent from patients on who they want to grant access to, and exactly what that person is authorized to see.

    Betsy Hodge, an attorney in the health care practice at Florida law firm Akerman Senterfitt, said doctors should make clear to patients exactly what someone would have access to if the patient shared login and password information on a physician portal. Even better, she said, is if a caregiver had his or her own login information and access to only the information the care recipient feels comfortable sharing.

    Attorney Rene Louapre, who works at the New Orleans offices of McGlinchey Stafford, said physicians should have a paper trail of patients grant-ing caregivers authorization to access records.

    Hodge agrees, saying that physicians should try to be as specific as possible on whatever form the patient may sign. It should detail exactly what will be disclosed, and the patient should write down names of everyone with whom he or she is grant-ing access. Those forms should be reviewed with the patient often, as caregivers often change.

    Each state also has privacy laws.

    Monday, December 5, 2011

    AAC (communication) apps for Android Devices

    More AAC Apps for Android


    AAC Apps for android devices

    Communication Apps for android devices. (non-iPads)  Here is a brief list:


    Ramping for People with ALS

    The Ups and Downs of Ramps

    By Domenic DeMenna, CAPS and Lisa Ann Fagan, MS, OTR/L
    Reprinted with permission from the ALS Association, Greater Philadelphia Chapter.  Originally published in Pathways, a patient services newsletter.

    One of the first concerns that we are asked to address for many of our clients is the need for access in and out of their homes. For individuals who use a wheelchair or scooter, a ramp may be necessary. For other clients who use a cane or walker, steps with a lower rise and deeper tread may be more useful. And for some clients who do not have the space for a ramp or extended stairs, other options such as a platform lift may need to be considered.

    A ramp is an inclined path between two surfaces of varying heights. The maximum slope of a ramp in residential settings in most municipalities is no greater than 1:12 (no more than 1 inch of rise for every 12 inches of run). This is the same maximum slope permitted in public areas as specified in the Americans with Disabilities Act Accessibility Guidelines. Although this slope may be allowable by zoning regulations, it does not ensure that a specific client will be able to propel themselves safely up or down a ramp with this degree of incline. A simple rule of thumb is; a shorter ramp will cost less money, but it will be harder to use because the angle is steeper. For example, if the stairs are 24” in height, then a proper ramp should be no less than 24’ long. This allows a person with “average upper body strength” to be able to get up the slope by themselves. Ultimately we all want the client to be successful with using the ramp.

    Some clients may need a more shallow slope (1:16) on a ramp to be able to push their own wheelchair due to upper body strength or cardiovascular limitations, while other individuals do not have the strength to push or manage a wheelchair for another person (such as their spouse or adult child) at that angle, and may require an even more shallow incline. A sloping walkway with a 1:20 incline is not considered to be a ramp, and does not require the guard rails and hand rails that a ramp needs for code-compliance.
    Another important consideration in a successful ramp design is the placement of a platform at the doorway. It can be difficult to get a storm door open, or to get the house door
    unlocked, while keeping yourself from rolling back down the ramp. A good design should include a platform or landing at the door entrance. The proper platform placement allows the user to get next to the door, and allow it to swing open with maximum ease. It is most valuable to observe the client to determine the amount of space needed, but at least 6 feet of space for approach and maneuverability is desirable.

    Also, long ramps should include a strategic place to take a rest. Most guidelines suggest that a ramp should have a level rest area for every 30 feet of incline run.
    Some clients who are able to walk with the support of a handrail, a cane or a walker may prefer a ramp to steps. Many individuals find the slope of a ramp to be a challenge to maintain their balance, or to be more difficult to ascend/descend when using prosthetic limbs. A rehabilitation therapist (occupational therapist or physical therapist) can assist in determining the best options for the client to be able to safely enter and exit their home.

    Features of Ramps
    Each ramp is unique once the following features are taken into account: the vertical distance that the ramp ascends/descends, the slope and length of the ramp, the duration that the ramp is expected to be needed, the materials used to construct the ramp (as well as the surface texture of the ramp), the placement and design of the handrails, and the aesthetic considerations.
    As discussed above, the slope of the ramp is determined by the vertical distance that needs to be traversed, as well as the distance or length of the ramp. Often, measuring the step risers leading to the door is not enough information to determine the ramp length. In locations where the ground is not flat, it is most important to recognize that the “difference in height”, from where the ramp will start at the ground surface, to the door threshold, is what determines the ramp length.  Often, the ground slopes away from the home.  For larger ramps, use of a level or measurement devise is necessary to determine the elevations of the terrain. A series of scenarios may be necessary to determine the most efficient ramp designs. Seeing the ideal design is not always obvious at first.
    If there is not sufficient room to accommodate a ramp with a 1:12 slope, or if the ramp is so long that the user can not use it due to fatigue or limited strength/endurance, other options such as a platform lift, exterior stair lift, exterior elevator or other devices may be needed.
    Some individuals will need a ramp for the rest of their lifetime, due to conditions that are not expected to improve over time (such as a spinal cord injury) or may become progressively more debilitating (such as
    multiple sclerosis or rheumatoid arthritis). Other individuals may need a ramp temporarily, as they recover from orthopedic surgery or regain mobility after a stroke. Consultation with rehabilitation professionals may be useful in helping the client determine if they need a permanent or temporary ramp.
    Once the decision has been made regarding the permanency of a ramp, the many options of materials need to be considered. Wood, concrete, aluminum, steel and other options are available.
    Cost Considerations
    Steel is always the lowest in cost. Wood can be the lowest if the labor is donated or provided by a family member or friend, or the highest in cost, if constructed by a contractor or carpenter.

    From lowest to highest cost:

    Installation Considerations / Potential for Shifting Over Time
    Concrete frost footings are required for most wood ramps. As frost heaves or settling occurs, some wooden or concrete structures may become misaligned. Steel and aluminum ramps are easily realigned as they are designed with adjustable support structures.

    Maintenance Considerations
    Metal may rust depending on the finish, and some touch up is occasionally required.
    Wood needs to be regularly treated with a wood sealer to prevent splintering and warping.
    From lowest to highest maintenance:

    Safety Considerations
    Wood may rot or warp. Wood, concrete and aluminum are all solid surfaces and allow moisture to
    accumulate and freeze in colder climates. Wood and concrete may become slick when wet, if not treated with a non-skid finish. Steel has a gripping texture, making it non-skid. Steel can also have an open, pattern ramp surface allowing moisture to pass through, eliminating the danger of ice film.

    Durability / Permanency Issues
    Wood can rot, while steel and concrete can last for ages. The nonskid grooving on an aluminum ramp surface can erode over time, becoming smooth and slippery in wet weather.
    Least to most durable:

    Depending on the property, wood can match an existing deck, steel can look like wrought iron; concrete can match a walkway.  

    Building Permits Issues
    Wood and concrete are permanent modifications to the home, requiring permits. Steel and aluminum modular ramps are classified as reusable, durable, medical equipment (DME) not requiring permits. Check with local building codes before choosing ramp materials.
    (Information adapted from American Ramp Systems)

    The placement of handrails may be dictated by codes, but the options for materials, shapes and finishes may greatly affect the usability of the finished product. An easy-to-grip handrail is oval-shaped, 1” – 1 ½” in diameter (depending on the hand size of the user), and smoothly finished, but not slippery when wet. Some users may grip the handrail from below and pull on it to propel their wheelchair up the ramp, others may use an overhand grasp to slow the descent down the ramp. Each user will approach the handrail differently, based on their needs. Observing the client using a ramp may provide valuable cues as to how they use the handrails.
    Clients may choose that their ramp not include handrails. However, at a minimum, turning platforms should have handrails for safety. Curbing on the sides
    of ramps may be required by code, but should be encouraged if not required. Curbs can keep a mobility device (and the user of the device) from going over the ramp edge. Injury and liability can result from omission of these safety features.
    Aesthetic considerations include the placement of the ramp, the style of the ramp and the integration of the design of the ramp with the residence and the surrounding neighborhood. The decision to have a ramp at the front door may raise personal issues. In some areas, a ramp may be interpreted by others as a sign of potential weakness/frailty, and may put the occupant at risk for crimes of opportunity. In other settings, condominium or neighborhood association regulations may prevent the owner from altering the approach to the front door. Other possibilities for ramp placement include a side or back entrance, or through a garage. Often (especially on older homes), the back door is much narrower than the front. This can be an issue for the person maneuvering a wheelchair through a tight space.

    If there is a storm door, piston dampers are often mounted on the door jamb, to assist in closing the storm door. When present, I often suggest moving them to the top of the door, or suggest removal of the storm door.  

    Many individuals consider installing a ramp going into the laundry room. Often this can be problematic, as the washing machine and dryer may be obstructing the path the individual needs to use. Careful attention needs to be paid to these details. These laundry room entries often lead to a hallway that is too narrow for a standard wheelchair to turn. This can result in damage to the walls and trim of the home. Wider doorways and hallways often become necessary; especially for clients who have not yet mastered the skills needed for precision wheelchair or scooter mobility.

    Simple low cost solutions can include replacing the existing door hinges with “offset” hinges. These cleverly designed hinges can add up to 1½” additional clearance by getting the door outside of the jamb when opened.

    The vertical distance that a ramp needs to traverse may be reduced through changing the topography of the site. Building up the height of the driveway or
    yard may reduce the length or slope of the ramp. Working in conjunction with a landscape architect may offer innovative solutions to increase access to/from the home, while maintaining or improving the attractiveness of the site.

    Installation Considerations
    Other factors in determining the most appropriate location and materials of a ramp include terrain, climate (need for overhang or snow and ice consideration), maintenance, cost (initial and lifecycle considerations), and the cost of other options (such as a platform lift). Ramps require less upkeep than platform lifts, stair glides, or elevators. Lifts can take up less space, but initial costs can be expensive. Platform lifts have specific requirements for the concrete base pad and electric. If a concrete pad is not installed correctly, ongoing service problems will be likely.  Ongoing maintenance contracts are a good idea for these electric devices. Replacement parts for an older lift can become difficult to locate. Exterior stair glides, similar to their indoor cousins, can be an affordable access solution, especially for city row home situations. It is recommended that clients consult with a care provider (occupational therapist or physical therapist) to determine if a stair glide is an appropriate solution for the client’s needs.

    Collaboration Results in Better Client Outcomes
    For clients who need home modifications that include getting in and out of the home, especially for those clients that use wheelchairs, scooters, cane, walkers or other mobility devices, a collaboration between remodeler and an occupational therapist can determine the best solution in partnership with the client. Assisting the client in selecting between a ramp, alternative stairs, or lifts/stair glides/elevators requires knowledge of the client’s current and projected abilities as well as an understanding of the benefits and features and potential challenges of the various options. A team approach provides the best options for the client to promote their safety and independence, and ensure their satisfaction with the modification services that are provided.

    Speak to your ALS team if you are interested in a ramping evaluation.