One of the most compelling sessions of this week’s Health and Wellness program at Social Media Week was Michael Graves’ fascinating (and at times very moving) talk on redesigning everything from hospital rooms to wheelchairs. At the core of Graves’ presentation was the need to embrace the patient perspective and bring empathy in to the design process. Sound advice for both digital and analog designers.
A world renowned architect and designer (there a fair chance you have on of his Target products in your kitchen) GRaves was paralyzed about a decade ago. Since then, he’s devoted a large part of his practice to redesigning health devices and technology to better serve the needs of their users. As Graves points out, very few designers ever think that they may end up in a wheelchair or suffering from a debilitating condition but if they embrace this perspective they can create vastly more effective products….
Graves used the example of his own home, where he replaced a curb designed to hold back water from a shower stall with a simple drain, immediately rendering the stall accessible for himself and other non-ambulatory users. He tried to share this knowledge with one of his employees who was designing a hotel for a client but only succeeded in getting partial buy in from the designer. Clearly, empathy is something not easily taught…
You can view Graves’ entire presentation here
- Michael Graves Target Collaboration Ends Design News 02.09.12 (apartmenttherapy.com)
- Graves: Why hospital rooms don’t work (cnn.com)
From the press release of Queen’s University (January 25, 2012
Historic legal rulings did not protect the rights of persons with disabilities, while legal rulings concerned with race or gender provided much more protection of individual rights and freedoms according to the Canadian Charter of Rights and Freedoms Queen’s University PhD student Christopher A. Riddle has determined in a recent study. “The motivation for this examination came from the very simple observation that the rights of persons with disabilities were not being promoted through the very mechanisms designed to ensure justice for everyone,” says the study’s author…
- The Rights Of People With Disabilities Are Not Being Promoted, Study Finds (medicalnewstoday.com)
- Study shows the rights of people with disabilities are not being promoted (medicalxpress.com)
- US Hospitality Industry Often Reluctant To Hire People With Disabilities (medicalnewstoday.com)
Children with disabilities and their parents are likely to benefit from music therapy sessions, which can improve social, motor and communication skills, Queensland University of Technology (QUT) research has found.
Kate Williams studied the effect of the Sing & Grow music therapy intervention on children with disabilities and found that music therapy also provided benefits for parent-child bonding and for parental mental health….
- Music Therapy for Pain Management (everydayhealth.com)
- The Amazing Benefits of Music Therapy (everydayhealth.com)
- Non-Medical Therapies for Alzheimer’s (everydayhealth.com)
- Music Therapy – Ya Tafari – Holistic Relaxation and Healing Music (thankgodfortheshelter.com)
- The History of Music Therapy (bigsexymedia.com)
- Another Miracle – Music Therapy & End Stage Alzheimer’s (alzheimersspeaks.wordpress.com)
- Who’s in charge here? (mindfulmusictherapist.blogspot.com)
- Reflections on Music Therapy Conference (musicalgems.wordpress.com)
- Music Therapy (renegadesufi.wordpress.com)
- A comforting swan song (eurekalert.org)
- Music Therapy Helps Grieving Teens (fyiliving.com)
Ouch! is a website from the BBC that reflects the lives and experiences of disabled people. It has articles, blogs, a very busy messageboard and an award-winning downloadable radio show - The Ouch Podcast). It’s aimed at those with a stakehold in disability: family, friends, professionals and, rather importantly, disabled people themselves – without whom all this would be a bit meaningless.
Some Other Features
The Motley Zoo comics features disabled animals such as animals that cannot go out to sea (owl and pussycat) because they are afraid of water.
A regular feature on accessible technology devices, such as the “Ouch! guide to audio description” and “TV help”.
A weekly Newsletter including disability news from the media and what’s new at Ouch!. Free subscription available.
Tech-interested visitors will enjoy Adrian Higginbotham’s regular feature on accessible technology devices, such as the “Ouch! guide to audio description” and “TV help”. Visitors can subscribe to the “Newsletter” to get a weekly brief on what’s new in disability news and what’s new on the site. The link to subscribe is on the bottom left side of the homepage. Visitors will want to check out the “Play” link, with its humorous drawings, comics and articles. The “Motley Zoo” comic depicts disabled animals, such as a shy peacock or the owl and the pussycat that can’t go out to sea because they have hydrophobia.
The network of public services that supports California’s low-income, disabled elderly is fragile, affecting the ability of these vulnerable residents to live independent lives in their own homes, according to a new study from the UCLA Center for Health Policy Research.
This policy note reports the first findings from a yearlong effort to follow the lives and challenges encountered by several dozen representative older Californians in Los Angeles, San Diego, San Francisco and Santa Clara who are enrolled in Medicare and Medi-Cal and who receive in-home and community care.
The documentary project comes as California lawmakers consider additional cuts to a network of services that help seniors remain “safely in their homes” — the stated goal of these public programs and the way in which an overwhelming number of Americans say they want to age.
The policy note, “Holding On: Older Californians with Disabilities Rely on Public Services to Remain Independent,” shows seniors struggling to live functional lives in the face of already reduced caregiving hours. For example:
Caring for the caregivers
Sara cares for her disabled son and husband, whose heart disease, diabetes, incontinence and limited mobility require 24-hour care. There’s help from In-Home Supportive Services (IHSS) and other family members, but Sara is the primary caregiver. Now, her back is acting up. She’s been delaying seeing a doctor to take care of her own needs — who will care for her family if she’s hospitalized?
Paralyzed by polio, Mary breathes with the help of a ventilator and gets around in a wheelchair. She needs help to dress, bathe, use the toilet and eat. She’s created an elaborate system to meet her needs, using maximum IHSS hours of support and offering room and board to another caregiver in return for care. Mary’s happy with her life and rates her health as “excellent,” but she knows that even a small change in the delicate balance of her care system will send her to a nursing home.
Incapacitated by stroke and diabetes and confined to a wheelchair, Jack spent time in a nursing home a couple of years ago, and he’s not in a hurry to go back. In the nursing home, he felt unsafe and more isolated than he does in his own house with support from IHSS. Jack’s a realist. He knows a nursing home may be in his future again, but he wants to choose when and where he’ll go.
According to the researchers, all participants in the study are aware that the networks of care they’ve cobbled together could easily unravel, and most say they’d rather “make do” by eating less often, letting their homes become less safe or allowing their medical conditions to worsen than give up their independence and go to a nursing home — the likely scenario if they lose the in-home services they now rely upon.
“These seniors are using every sort of innovation and self-deprivation to make do,” said Steven P. Wallace, the study’s senior author and associate director of the UCLA Center for Health Policy Research. “They have nowhere to turn if their fragile care systems are further undermined.
“Policymakers need to see the faces of these vulnerable Californians as they crunch the numbers in budget discussions,” Wallace added. “Further cuts are an assault on their independence. Slashing in-home and community care will also increase total health care costs as these seniors increasingly use emergency room care, are hospitalized or enter institutions — under conditions that could have been prevented.”
Budget cuts looming
California, which is home to the largest number of older adults in the country, has several programs funded by federal, state and local dollars to assist low-income adults with disabilities. Proponents of these programs say that while such care isn’t perfect, it is far less expensive and more humane than the alternative — placing seniors in publicly financed nursing homes.
Yet, IHSS program-hours were trimmed by 3.6 percent in January 2011, and they face further across-the-board cuts of 8.4 percent, plus additional targeted reductions in the governor’s proposed budget. Adult day health care centers are slated for elimination, and supplemental security income cash benefits are to be reduced for single low-income aged and disabled individuals.
All the older adults in the study receive IHSS support, ranging from 20 hours of in-home help each month to the maximum of 283 hours per month. Most need help with household tasks, such as cleaning and cooking, and personal tasks like getting dressed or taking medications. Many require help getting in and out of bed, bathing and using the toilet. Some who might benefit from adult day health care or other supportive programs are unable to participate because of limited mobility or lack of transportation.
“California’s current system to support old and young adults with disabilities at home operates in silos and is not person-centered,” said Bruce Chernof, M.D., president and CEO of the SCAN Foundation, which is funding the study. “The Brown administration has an important opportunity to design a more stable, integrated, efficient and person-centered system that can meet the needs of these vulnerable residents throughout the state.”
- Home Care Services (MedlinePlus.gov) has links in areas as related issues (as nursing home alternatives), financial issues,organizations, and law/policy)
- US Administration on Aging has links to local programs, a benefits check up, related information, and more.
- National Association of Area of Area Agencies on Aging includes information on policy/advocacy, programs and resources/publications. It also includes links to local resources.