May 1, 2004
Real Living with Multiple Sclerosis
MOST PEOPLE DON'T THINK much about walking. They just do it. But for over 19 million Americans living with walking difficulties, walking involves planning, and often, disappointment. In the book, When Walking Fails: Mobility Problems of Adults with Chronic Conditions, author Lisa I. lezzoni examines barriers to physical, professional, and social mobility encountered by people who have difficulty walking.
Iezzoni, a professor of medicine at Harvard University, proposes public policy solutions that would improve the lives of people with walking difficulties, as well as society as a whole. She also seeks to inform policy makers and voters about the negative consequences of current health insurance and social policies that limit the mobility, and therefore the productivity, of a large and growing segment of the American population.
The subject of walking problems is one she knows intimately; she uses a scooter due to MS. And while the book draws on census and other public data to depict the prevalence of walking difficulties in communities across America, she puts human faces to the information, interviewing over 100 people. The interviewees describe in their own words their illnesses, the mobility difficulties that result, and their strategies for dealing with these limits. lezzoni also interviews health care providers and insurance company executives to get their perspectives on the treatment of walking difficulties.
She has found some discomforting facts through her research. lezzoni takes issue with health insurance payment policies limiting access to long-term occupational and physical therapy, which strive to maintain existing functionality or slow further decline. These and other "medical necessity" criteria often impede access to mobility aids, such as scooters and wheelchairs, that could increase independence. Notably, such limits are put in place to reduce plan costs so insurers remain competitive in the health insurance marketplace.
The book contains other important information, lezzoni's research reveals and elaborates on significant public health and individual rights policy concerns:
* Walking difficulties can emerge at any time, typically as a result of chronic progressive disease.
* Over 10% of the adult population living outside nursing homes or other institutions report having walking difficulties.
* Walking problems often affect people's emotional and physical health, resulting in falls, loss of independence, depression, pain, and stressed family relationships.
* Many people don't talk about walking difficulties with their doctors, and therefore, don't get referrals to clinicians trained in how to improve functioning.
* Assistive mobility devices, such as wheelchairs and scooters, are unaffordable to 60% of those who need them, and nearly half of those who do acquire these devices to increase mobility outside the home must shoulder the entire cost.
Iezzoni cites countries that are farther ahead in improving access and mobility for those with walking difficulties. However, she does applaud the undeniable progress in making America more accessible for citizens.
The last chapter of the book is perhaps the most hopeful. Here the author lays out her ideas to ease access to mobility aids for everyone. For example, "mobility marts" would offer one-stop shopping for individuals dealing with mobility problems, instead of navigating the current dizzying maze of providers and benefits rules. The mobility marts would have physical therapists and occupational therapists available for on-site or at-home consultations; referral to physiatrists for specialized assessments and planning; a diverse selection of mobility aids, from leg wraps and canes to scooters and wheelchairs, along with insurance specialists to help match products with insurance coverage or other payment resources; and readily accessible information on public and private resources to overcome mobility barriers.
When Walking Fails is a useful planning resource for people with progressively
debilitating conditions such as MS, whose mysterious symptoms often remain
hidden for years. The book increases our understanding of the day-to-day
challenges faced by individuals presently living with walking difficulties,
as well as emphasizing the certainty that many others will have to contend
with these problems in the future. Appendices contain short biographies
of the interviewees (many of whom become very familiar in the preceding
chapters), selected resources (phone, TTD, fax, and Web sites), and an
exhaustive reference list of articles, books, and reports used in the book.
Copyright © 2004, Real Living with Multiple Sclerosis