By Stephanie Mensh. We probably don’t need a new report to tell us this: middle class people cannot afford the cost of nursing home services or long term home health care services.    The AARP, Commonwealth Fund, and SCAN Foundation joined  forces to examine state-by-state affordability,  accessibility, choice, quality, and–interestingly–support  for family caregivers, in their first-ever “State Scorecard  on Long-Term Services and Supports for Older Adults, People  with Physical Disabilities, and Family Caregivers,”  just published earlier this month.

Caregiver supports are defined by the Scorecard to include:

• Percent of caregivers getting needed support
• Legal and system supports for caregivers
• Health tasks able to be delegated to aides.

The Scorecard showed that 77% of family caregivers who were surveyed a few years ago reported that they get emotional and social support when they need it.   Legal and system supports scores were much lower, averaging a “3″ on a 12-point scale. These supports  were defined as:  state family medical leave laws;  mandatory paid family and sick leave; protection of  caregivers from employment discrimination; the  extent of financial protection for the spouses of  Medicaid beneficiaries who receive nursing home or  long term community support services; and  assessments of the caregiver’s health, quality of  life, etc.    The researchers also proposed that family caregivers would benefit if state nursing license laws permitted aides to perform a list of key “health maintenance” activities, such as administering medications, and diabetes testing and injections. (more…)

By Stephanie Mensh. We are bombarded with conflicting messages on food.  On one front, we have Michelle Obama railing against childhood obesity, and organizations like the American Heart Association and the federal government driving on diet-related diseases—diabetes, heart disease, stroke, and chronic conditions.  Countering these efforts all around us, are compelling mouth-watering advertisements for high calorie, high fat, high sugar foods.  Every activity—at work, at home, at the movies, at the mall, at the park, studying, watching TV—requires lots of food and sugary drinks.

Resisting these omnipresent temptations requires an incredible amount of individual willpower or habits that go contrary to the average American routine.  Despite my active role in advocating for healthy diet/anti-obesity policies, I succumbed.  Over the past 2 years, I steadily gained weight and was quickly becoming two dress-sizes larger. Then, at my annual physical, my doctor advised that my elevated cholesterol levels needed to be treated.

I knew that I had to go on a diet and stop eating my favorite chocolates, cookies, cakes, bread-and-butter, pasta, rice, creamy soups, and other high calorie comfort foods. I also knew that I could not do this without professional help. My husband would be supportive, but he could not help me do something requiring so difficult an internal, personal change.

I returned to “Attila the Nutritionist,” a stern, no nonsense professional who had treated me 8 years earlier. At that time, I lost more than 35 pounds over about 8 months. We met regularly in person, with more than a few sessions bringing me to tears.  This time, my goal was to lose 20 pounds between February and June, an excruciatingly slow process of about 4 pounds each month for 5 months. (more…)

By Stephanie Mensh. Watching the progress of Rep. Gabrielle Giffords brings back memories. My husband Paul Berger was a few years younger than Giffords when he had a massive stroke from a ruptured, bleeding aneurysm on the left side of his brain, leaving him severely disabled.

I still vividly remember cheering for every small sign of recovery, like his giving a thumbs up when the doctor asked how he felt and the day he first sat in a chair.

Paul’s brain surgery was performed in a downtown hospital.  This was 25 years ago. He was in intensive care, then in a neurosurgery room for almost a month before being transferred to the rehabilitation floor of the hospital for two months of intensive physical, occupational and speech therapy. During that time, many of his co-workers and friends visited often during lunch or right after work, since the hospital was in a central location and near a subway stop.  I would come in most mornings before work, then later in the day on my way home.

When Paul’s rehab benefits ran out, we had a big decision to make. We clearly wanted to continue a full schedule of rehab. Fortunately his parents were able to help with the cost. Our choices were:  stay as an inpatient in the downtown hospital, go to another inpatient rehab hospital in the suburbs or out-of-town, or live at home and have outpatient rehab.  I did all the leg work on this, with the idea that I would take Paul to see the final choices.

I was trying to figure how much rehab we could afford, and if one more month of inpatient rehab would be the “cure,” since I was both inexperienced with the recovery process, and too young to believe that it would take more than a few weeks to heal. When I met with Paul’s rehab team, they told me to expect many more months of rehab, and even so, that we needed to learn how to live with Paul’s disabilities now. This helped clarify the need to bring Paul home and arrange outpatient rehab, which was the best use of our money, not to mention the fact that Paul himself was tired of being away from home.

Looking back, I believe that a vital part of Paul’s rehab and recovery was the easy access for his co-workers and friends during his inpatient time, and the ability to visit familiar places once he came home. His link to the community remained unbroken.

Therefore, I am a little concerned about Rep. Giffords’ family moving her to Houston for rehab. Even though it may be a world-class center, it’s missing a very key element: the co-workers, neighbors, friends, and Tucson community who will do anything to help. Did you see the little boy who donated $2.47 because he thought she might need it? Certainly Tucson has very capable rehab professionals, not to mention a leading center for speech-language pathology.

The decision is difficult, complicated by Rep. Giffords’ lifestyle, living in three cities: Tucson, Washington, DC, and Houston. Her husband’s job and support system is in Houston, and as one caregiver to another, I certainly recognize his need to have his people around him and return to his routine (if being an astronaut is “routine” in any way).

To promote Rep. Giffords’ return to independence and to keep her links to her home town and her DC life, I believe that regular trips to Tucson and to DC should be part of her rehab plan.

I have learned that you make the best decision you can at the time, keep your sights on the future, and don’t look back.

By Stephanie Mensh.  My husband Paul Berger and I had only been married for 4 years when he had his stroke at age 36. I’ve been a caregiver for over 20 years now. Looking back, there have been many innovations in our health care system that have made overcoming stroke and chronic disabilities a little easier and our lives better. And, there are some that have made things harder, too. 

Medical technology–drugs and devices–have improved so much over the past 20 years that if Paul’s aneurysm had ruptured today, he might have recovered with little or no disability. The CT scan he had 20 years ago was state-of-the-art, but the neuroradiologist could not localize Paul’s aneurysm. Today’s CT scans are so much better and MRIs are readily available in most cities and large towns that I’m sure they could find it immediately.

His only treatment choice back then was to open his skull, expose his brain, and place a metal clip on the aneurysm. Today, neurosurgeons have an option of a minimally invasive procedure to thread a coil and/or stent up through the blood vessel to block off the aneurysm.            

Twenty years ago, to learn all I could about aneurysms and stroke, I had to find a medical textbook. Fortunately, I worked in the same building as the American Medical Association’s Washington, DC office, and was able to find a book on neurosurgery. Today, you can “Google” aneurysm and stroke and find thousands of entries, with excellent sources accessible online like the National Institutes of Health, leading research and treatment centers like the Mayo & Cleveland Clinics, and information for patients from the medical specialty societies and volunteer health organizations. And with online support groups, there are opportunities to chat with other caregivers, for a comforting sense that you are not alone. 

Taking advantage of everyday technology like computers and cell phones have offered more options, for example, Lingraphica and other makers of assistive communication devices have been able to shrink the size of their products from the bulky laptop-type devices of 15 years ago to “apps” for cell phones. 

Indeed, the computer, the Internet, and cell phones have made caregiving easier by improving access to information, building communication options, and knowing that Paul and I can reach each other immediately with a click of the mouse or cell phone speed-dial. (more…)

Our series on Patient Advocacy kicks off with today’s post.  Over the next week, we will hear from a variety of women about their personal journeys and professional experiences.  Early in September we will compile these posts, along with our August Man of the Month’s and blog talk radio interviews, into an e-book.  As always, we look forward to your comments.

By Stephanie Mensh. When my husband, Paul Berger suffered his stroke, we were both in our 30′s, established in our careers, and planning for the future. We wanted to continue our active lifestyle, which meant overcoming Paul’s disabilities and pulling services out of many different organizations, each with their own roadblocks. I became Paul’s advocate. Here are my tips for successful advocacy to get what your survivor needs from the system.

There are three types of advocacy: (1) personal advocacy by individuals, family members, friends or others to obtain benefits and services from public or private service providers; (2) legal advocacy by a lawyer to navigate legal processes; and (3) political or policy advocacy by lobbyists and concerned citizens to change government systems.

Personal Advocacy

Most caregivers learn to be personal advocates by “on-the-job” training, usually starting with hospital, medical, and therapy providers, then health insurance. Here are some tips to help you improve your personal advocacy:

• Make a written list of your needs and questions, and go after the most important first.
• Research as much as possible from insurance policies, medical brochures, treatment plans, and other sources.
• Talk to other caregivers and ask for advice, especially for the names and phone numbers and emails of people who were helpful to them.
• Call and ask for the person or department that specifically handles the services or questions you need answered. Ask for the exact spelling of that person’s name.
• Write down the date, time, person’s name, and topic discussed in any phone calls. Keep this in a file with your other materials and research.
• Be persistent. This may mean calling every day. This may also mean asking another family member or friend to call on your behalf.
• If you feel that your questions are not being answered, or you are not getting the appropriate services, find an outside professional, agency or organization that can intervene on your behalf.

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By Stephanie Mensh. During the next week or so, various Federal, state, and local government agencies as well as consumer organizations will be celebrating the 20^th anniversary of the landmark legislation, the Americans with Disabilities Act (ADA), signed into law on July 26, 1990. 

My husband suffered a stroke that resulted in speech and mobility impairments around the time that the ADA became law.  The ADA continues to help my husband and family by increasing awareness and accessibility for people with disabilities to fully participate in our community, to go to school, work, shop, movie theaters, restaurants, and hotels, to use public transportation, to access hospitals and health care, and to have a place to call “home.”

The ADA rights also extend to caregivers of people with disabilities.  Balancing the demands of a full-time job and taking care of a family member with a disability or chronic illness can be difficult, even with the most understanding employer. Under ADA caregivers, male or female, are protected from job discrimination resulting from real or perceived family commitments. (more…)

By Stephanie Mensh. House and Senate Appropriations health subcommittees are in full swing this month. On May 5, the National Institutes of Health Director testified to the Senate subcommittee.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

Every January, new billing rules and rates go into place for physicians’ services as part of the annual update to Medicare’s Physician Fee Schedule. Dominating DC health policy concerns in this arena are the medical community’s efforts with Congress to address Medicare’s cost-of-living adjuster, known as the “sustainable growth rate” (SGR), which would have lowered 2010 fees across-the-board by 21 percent, if not for a last-minute temporary stay through the end of February. Negotiations with Congress are on-going to provide a long term or multi-year solution—a costly “fix” that I believe is well worth the price to keep physicians in the Medicare program, and seems to have widespread support.

Getting much less attention is a unilateral policy pronouncement made by the Centers for Medicare and Medicaid (CMS) that Medicare will no longer pay specialists a higher rate for consultations—services often provided by specialists like cardiologists and neurologists. Instead, all physician visit services, whether defined as “evaluation and management” (E&M) services or consultations, will be reimbursed at the same E&M rates. (more…)

My husband Paul Berger suffered a stroke resulting from a ruptured aneurysm when he was 36—that was 20 years ago. Some things have improved, like treatment—the CT scan then could tell there was bleeding in his brain, but couldn’t locate the site of the burst vessel. A week later, after a follow-up test, he had brain surgery to implant a platinum metal clip. The night before the surgery, he had a re-bleeding, which probably caused the severe stroke, devastating his speech-language functions, and paralyzing the right side of his body. If this had happened today, the improved diagnostics probably would have located the problem immediately, and he might have had a coil or stent threaded through the blood vessel to the aneurysm, instead of opening his skull. He might have had a shorter recovery and little residual disability and I might not be writing this blog as a caregiver.

Some things have not improved—like health insurance coverage. As the years have gone by, coverage for hospital stays and rehabilitation have been shrinking. For example, Medicare has a cap on outpatient rehabilitation that makes no sense—it’s not capped if performed in the more costly hospital outpatient department, but limited to about $1,800 for physical and speech therapy combined, and $1,800 for occupational therapy provided in an office. At current rates, that’s about 45 hours of total therapy, not nearly enough for stroke recovery (to be fair, there is an exceptions process, but it is scheduled to expire at the end of this calendar year).

This leads to a more difficult issue in the health reform debate—what exactly should be covered by health insurance? Acute care, annual preventive visits, post-acute, healthy living coaching? Commercial health insurance has many ways to limit its exposure to the costs of long term chronic conditions, like surviving stroke, including caps on therapy. Another way is challenging access through “pre-existing conditions” ineligibility and/or very high premiums. As a result, the physicians and therapists seem to prescribe and set treatment goals that match the insurance plan, often short of the patient’s needs, especially for rehabilitation following stroke. They look to the survivor’s family, particularly the spouse/caregivers, like me, to pick up the torch and carry on.

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Caregivers need all the help we can get in navigating the confusing and often conflicting health, medical, and financial decisions required to support a family member with severe or chronic health conditions. My husband, Paul Berger, suffered a severe stroke from a ruptured aneurysm at the young age of 36. Our insurance covered his acute medical needs—brain surgery, hospital care, and even some rehabilitation services. Reimbursement ended when he was discharged from the rehab unit of the hospital, but he still needed—and could benefit from—long term speech, occupational and physical therapy.

The first decision was how to continue care. Should we try to coordinate outpatient care through the hospital, or through independent practitioners? Should we sacrifice our savings by spending a lot of money to extend his inpatient time at the hospital or transfer to another less costly one nearby? Should we sacrifice our time together and support of local family and friends to send him out of town to the state’s only comprehensive rehab facility run by the department of vocational rehabilitation services a few hours away?

In my professional life, and intellectually, I strongly supported community-based care. My gut told me that Paul needed to stay connected in town, and find a way to make it work from home. My heart didn’t want us to be separated. I became Paul’s “case coordinator” and orchestrated his weekly therapy schedule, periodic doctor’s visits, paperwork, prescriptions, equipment, home modifications, a daytime driver/companion/homework helper (since I continued to work full time), vocational rehab assessments, contact with his employer, and many of the chores Paul had handled—taking care of our finances, among others.

This was twenty years ago. At the time, AHRQ’s predecessor agency had the ambitious goal of writing clinical practice guidelines for major conditions affecting Medicare’s budget. Cataract surgery and treatment of benign prostate enlargement were at the top of the list. Post-stroke rehabilitation made it into the mix, and Paul and I testified during a public hearing. We also coordinated testimony by speech and physical therapists to talk about the need to clinically recognize that stroke survivors – like Paul – could continue to make progress many months, indeed years, after their stroke.

These guidelines are in the archives at AHRQ. A few years ago, the Department of Veterans Affairs developed a set of post-stroke rehabilitation guidelines. I have seldom, if ever seen these guidelines provided to survivors and their families.

I believe that for comparative effectiveness research (CER) to be successful, meaningful public outreach is needed to get the information into the hands of the patients and their families. CER needs to provide advice for real life decisions in real time. Studies must be designed with the patient in mind. Myrl Weinberg, President of the National Health Council, said it best:

“Comparative effectiveness research should supply us with good evidence and data about what works and what doesn’t. However, it should not be just about one product against another, or treatment process, or combination thereof. We also need to look at how different delivery systems can be compared.” www.nationalhealthcouncil.org

I am so thrilled to see the Tobacco Legislation pass the House and Senate and the President’s promise to sign it. It is a major step forward, but we can’t stop there. I urge the President, the Secretary of HHS, and other leaders to use this as a leverage to ratchet up the pressure to prevent teenagers from starting to smoke and to help smokers battle the addiction. The savings would be enormous, in health care costs, as well as quality of life and loss of life due to smoking-caused heart disease, emphysema, cancer, and suffering from a host of side effects in the function of every organ system: skin, teeth, digestive, bladder, brain, eyes.

My father died at age 65 due to heart disease caused by his heavy smoking. When he promised to stop, he would smoke in the car and come into the house, not realizing that we non-smokers could smell the detritus on him. My brother died at age 40 from a terrible head and neck cancer directly related to his heavy smoking. My mother-in-law died from Chronic Obstructive Pulmonary Disease (COPD), from heavy smoking for most of her adult life, even though she gave up smoking 15 years before her death. I think my father, brother, and mother-in-law started to smoke because it looked cool or tough or sexy, and the nicotine gave them a little “high,” and a way to socialize. They just couldn’t break the habit or didn’t believe that they would suffer the consequences.

When I see others smoke, especially twenty- and thirty-somethings, I want to walk up to them and pull the cigarettes out of their mouths, but that would probably be considered assault. Even the new Tobacco Bill doesn’t condone such action. But something equally compelling is sorely needed that can reach out to the individual smoker, provide hands-on medical intervention and coaching to quit smoking and retrain physical and social habits, reward success and protect against relapse.

I looked at the outline of the new federal Stimulus package for pieces that would help people like me–caregivers and families of stroke survivors–something over and above what other families might receive in tax credits, etc. It’s always in the fine print. The only direct item I could find related to Unemployment Compensation:

If you lose your job, your former employer cannot try to get you disqualified from receiving unemployment benefits if “separation from employment…is for compelling family reasons…[including]: illness or disability of an immediate family member… The Labor Secretary would define immediate family member.” [Source: Conference Committee Report posted on Thomas.gov]

If you lose your job, there is some help for continuing health care under COBRA–particularly important if the caregiver’s insurance is covering the stroke survivor. Once you change insurers, it is almost impossible to get health insurance coverage for family members who have “pre-existing conditions” like stroke.

There are some additional funds for direct health care services through the Medicaid program and federally-supported community health centers. Also, additional funds for home-delivered food/nutrition services under the Administration on Aging programs, if you qualify.

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When the Congressional Budget Office released their “Health Budget Options” report last week, I eagerly scanned through the tome for recognition and support for caregivers—like myself—of people with disabilities or chronic health conditions. We’re mentioned in a parenthetical in Chapter 10 on Long Term Care:

“(Much long-term care is provided personally by the family and friends of elderly and disabled individuals.)”

Earlier in the chapter, CBO points out that patient/family out-of-pocket spending accounted for 20% of the total long term care spending. While one-fifth of spending is a lot, I think it probably underestimates the full value of direct care provided by the family, purchases of needed non-prescription and non-reimbursed medical equipment and supplies, and lost income by the caregiving family members.

CBO does make some oblique references to the magnitude of unaccounted-for care in its discussion of the pros and cons of adding home-based care incentives to Medicaid—the dreaded “out of the woodwork” factor—the number of people they cannot count who might come forward for services and wreck federal-state budgets. (more…)

November is National Family Caregivers Month, designated by the government to recognize the efforts of spouses, children, and other family members in giving free care to loved ones struggling with chronic health needs. The impact of caregiving is significant—billions of dollars of uncompensated care, billions of dollars of lost productivity, and increased stress-related health conditions among the caregivers.

- 17% of family caregivers are providing 40 hours of care a week or more.
- The value of the services family caregivers provide for “free” is estimated to be $306 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

As a caregiver and a health policy expert, the statistics that were the most painful to learn:

- 22% of family caregivers say they need help communicating with physicians.
- 50% of caregivers reported that different providers gave different diagnoses for the same set of symptoms and 62 % reported that different providers gave other conflicting information.
- Over 40% of U.S. primary care physicians think they don’t have enough time to spend with patients.

Communication is such an issue that the National Family Caregivers Association (the source of these statistics) chose as the topic of their first two national teleclass/webinars, “Communicating Effectively with Healthcare Professionals.” In addition to learning how good communication can facilitate optimum health care and how to prepare for doctor office visits, the classes also featured how to:

- Distinguish between different styles of communicating with healthcare professionals
- Compose assertive messages for communicating in healthcare situations
- Be prepared for and cope with an emergency room visit.

I’ll be celebrating National Family Caregivers Month by reaching out to other family members and friends about effective communications with their physicians and other healthcare professionals.

More details and resources for caregivers are available on NFCA’s website at: www.nfcacares.org, and the National Alliance for Caregiving at www.caregiving.org.

A Medical Home may be coming to your neighborhood soon—and it’s a welcome first step to help consumers and caregivers coordinate complex medical services for family members suffering from chronic, debilitating diseases. CMS will be hosting a public telephone “Open Door Forum” on October 28 describing Medicare’s new Medical Home Demonstration Program, set up by 2006 Medicare legislation, aimed at recruiting primary care physicians and local health clinics to sign up when the program begins next year. (more…)