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…)

Sarah Palin makes me angry. She claims to represent families with special needs, but I can’t point to much that she or John McCain or 8 years of George W. Bush have accomplished to earn this claim. From my vantage point as a caregiver for 20 years to my husband, Paul, who became disabled at 36, and—full disclosure—as a Democrat, I believe that the government has a responsibility to provide for people with disabilities and chronic health problems, and their families. We need creative, supportive, innovative leadership to lift up the hopes and futures of these citizens.

My husband Paul had a ruptured brain aneurysm, resulting in a stroke that left his speech severely impaired and his right arm paralyzed. Over the years, we have met many other people and their families who are coping with significant disabilities. I can tell you that the number one trend in recent years is the decrease of, and lengthened waiting lists for, the services that these families rely on—health insurance coverage, Medicare, Medicaid, vocational rehabilitation, special education, transportation, and much more.

I’m all for personal responsibility, and I can assure you that families like mine take on a tremendous amount of responsibility. But it’s really hard to fight back and conquer impairments when you can’t get the basic rehabilitation and training you need.

Besides being responsible for the decline of services (not to mention research budgets), the current administration, through the waging of war in Iraq, has created a whole new generation of people with disabilities, such as the mild (often not recognized for some time) to severe brain injuries caused by road-side bombs.

I would like to hear Palin and her supporters explain exactly what the Republicans have done and plan to do to help people with disabilities aspire to and acquire a good job, a fulfilling life, and independence. We need more than a friend in the White House. We need advocates who will make a real difference.