Time For A Shakeup In Hospice Care

One of the beautiful tools of social media is the ability to spread ideas and information at lightning speed. In medicine, a study from 1998 indicated it takes an average of 17 years before new knowledge generated by research is assimilated into clinical care. I venture to say if that study were performed again today, the time compression would be astounding. The internet started this trend, and social media is adding to the pace of change in our health care system. My grandiose dream in this post is for social media to force a needed change in an important component of our health care system – hospice.

The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. It took the United States seven years to follow with their first hospice facility in 1974. Since that time, the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness.

As we embark on new ideas, hopeful outcomes and unintended consequences occur. I still love the convoluted quote from Defense Secretary Donald Rumsfeld in 2002, “We know there are known knowns: there are things we know we know. We also know there are known unknowns: that is to say we know there are things we know we don’t know. But there are also unknown unknowns — the ones we don’t know we don’t know.” As much as people made fun of him, he makes a good point. This brings me to the evolution of hospice and where we need to go next. There are three main facets of hospice care that need to change immediately.

The requirement to give up on curative treatment.
The original idea of hospice is that once curative treatments are no longer effective, a patient enrolls in hospice to receive comfort care. In our culture of “fighting” cancer, an illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.

In the last decade or so, the movement has been toward “palliative care” – care that focuses on easing symptoms without a focus on curing the disease. Palliative care can address the symptoms of the illness or symptoms that result from treatment of an illness, such as the side effects of chemotherapy. A palliative care physician can assist in any type of illness – advanced heart or lung disease, cancer, renal disease – you name it. If you have an unbearable symptom from your disease or treatment, a palliative care doctor is the one who can help. And the kicker – early palliative care can improve longevity. I expect the decreased burden of stress and discomfort helps patients live longer with advanced illness.

Many hospice organizations allow patients to enter hospice to receive palliative care even if they want to continue some type of treatment for their illness. Unfortunately, that choice varies from community to community, and is often dictated by the size of the hospice organization or the profit motive. Another stumbling block is the Medicare requirement that patients “give up” curative care when they enter hospice if Medicare is paying the bill. Considering that Medicare pays for 84% of hospice care, this is a significant issue. Micromanaging care based on payment takes precedence over common sense of what is right for the patient. A recent article in “Health Affairs” outlines these issues.

What makes this situation more complicated is that some treatments frowned upon by hospice actually help the patient feel better. For example, intravenous fluids to hydrate a patient most often increase symptom burden – the patient has to urinate more and fluid can build up in the tissues and lungs. However, I recently had a client with multiple myeloma and fluids decreased the excess protein in his bloodstream which improved his sense of well being. Hospice refused to administer the fluids, so he went to his doctor’s office to receive this treatment. The reliance on strict rules takes away the ability to tailor treatment to the patient. And why do the rules have to be so black and white? This brings me to point number two…

The fee for service payment system when a person is undergoing treatment and subsequent move to flat fee payments for hospice is totally messed up.
Doctors and hospitals are paid based on how much work they do, known as “fee for service.” Although the majority of doctors do the right thing, the incentive to “do more” is there in a number of ways. A dying patient in despair asks, “Is there anything else that can be done?” Of course, the doctor wants to do everything she can to help the patient. It is easier to provide treatments and get paid more than it is to have a difficult conversation with the patient to convince them that a move to comfort care is the better route.

Hospice is paid differently. Hospice is paid a flat fee per day for the care they provide. The incentive is totally opposite fee for service – the less they do, the higher their profit. This is the reason some hospice organizations will not provide certain services. Chemotherapy and radiation are expensive and the cost of patient care can easily exceed the payment hospice receives for providing that care.

This is a difficult problem to address. The move toward patient centered medical homes may eventually provide the answer.

And finally… who can really tell if you have less than six months to live?

Verification that you are going to die in less than six months is a requirement to enter hospice. Physicians are thankfully moving away from the “God” complex and it is unfortunate they are still asked to play that role in making predictions on life expectancy. This requirement delays care that could help people live longer and more comfortably.
Now, the call to action – what can we do now?

  1. A palliative care consult should be obtained at the onset of a life threatening diagnosis or seriously advanced illness. This way, people can receive comfort care while they are being treated for their illness. It will also ease the move to better end of life care once curative treatment is no longer effective. If you or someone you love has a serious illness, insist on a consultation.
  2. Implore Medicare to remove the six month rule on hospice enrollment. What can you do that won’t take much time? Use social media – tweet to @MedicareGov “Remove six month life expectancy requirements for hospice care. Pay for palliative care at the beginning of a serious illness.”
  3. Payment systems must change. Fee for service is a problem in all facets of our health care system and per diem fees present a different set of problems. What can you do about this? Nothing yet. I am hopeful the move toward patient centered medical homes will eventually produce solutions.
  4. Support organizations working on change in advanced care models. The Coalition to Transform Advanced Care is hot on this mission. They have organized hundreds of individuals and organizations to transform the way we help people with serious illness. Their national summit will be held on January 29 and 30 to frame the challenges, present solutions, and create an action plan for results. I look forward to their reports.

Hope for Reversing Autism

In encouraging news for parents of autistic children, researchers say early behavior therapy can help normalize brain patterns responsible for the symptoms of the condition. Children diagnosed with autism spectrum disorders who participated in the Early Start Denver Model program, which involves intensive social and linguistic engagement with toddlers, showed changes in the way their brains process human faces and objects. Autistic youngsters generally show more brain activity when they view images of an inanimate object like a toy than when they see a picture of a woman’s face. But after two years of ESDM therapy, the autistic children showed the opposite response, and these patterns came close to mimicking those found among normally developing children. It’s a hopeful sign that it’s possible to halt some of the brain changes linked to autism and possibly even reverse them. But the key to the program’s success involves early and intensive intervention with properly trained counselors who actively engage the toddlers in several hours of therapy a week.

Youth Mental Health Services Often Neglected For Many Teens

Adam Lanza, the Sandy Hook Elementary School shooter, is not known to have been professionally treated for mental illness. In that he was not alone. Across the country, many youth who need help the most are not getting it.

Almost two-thirds of teens with a lifetime mental disorder fail to get professional help, according to the National Institute of Mental Health. Of all those teens with mental health issues, those with severe mental disorders get treatment even less often, with half reporting they have never been seen or treated by a professional therapist.

Recent budget cuts, a shortage of mental health therapists, and inadequate community health services are among the reasons for the lack of treatment, mental health professionals say. Many health insurance plans don’t cover mental health therapy. Teens and their parents are often reluctant to acknowledge the need for professional help and may not know where to turn.

The NIMH findings, which predate the tragic killings on Friday in Newtown, Conn., suggest new opportunities for action by lawmakers. Apart from the divisive issue of gun control, the fact is that mental health services are understaffed and underfunded – and getting more so.

In the past three years, states strapped for cash have cut their funding of mental health services by $4.3 billion, according to a survey by the National Association of State Mental Health Program Directors. Nationally, that’s a drop from about $41 billion a year to $36.7 billion. In response, most state mental health agencies have imposed hiring freezes and half have laid off mental health professional staff. Eight states have closed their psychiatric hospitals.

At the same time, the demand for mental health services is skyrocketing. The caseload of community mental health service providers has shot up 49 percent during the recession. The use of hospital emergency rooms for psychiatric cases has gone up 22 percent, according to the association.

“There are just a lot of people who are not getting served, and in particular those who are not insured,” said Robert W. Glover, executive director of the association. Hard economic times are especially stressful, he said, causing a rise in alcohol and drug abuse, family violence, and suicide. “This is when when you need more services, not less.”

With the rising demand and severe cuts in mental health funding, he said, “I’ve never seen it this bad in 40 years. People are ending up in jail, in emergency rooms or homeless.” Or on a murderous rampage. Lanza exploded into violence Friday, murdering his mother and then gunning down 20 first-graders and six adults at Sandy Hook. Amid the carnage at the school, Lanza fatally shot himself without leaving a note. It has since been reported that the 20-year-old had been suffering from Asperger’s syndrome, an autism-like disorder. Experts have said there is no link between the condition and violence.

Ironically, one of his victims was Rachel D’Avino, a 29-year-old behavioral therapist who worked with autistic children at Sandy Hook.

Asperger’s syndrome, which can be managed if treated, is not uncommon among teens. As many as one in five teenagers suffer from some forms of autism, bipolar disorder and other illness that imposes “severe impairment” across their lifetime, the NIMH reported last year. The study was drawn from lengthy face-to-face interviews in 2010 with a nationally representative sample of 10,123 teens between the ages of 13 and 18.

“The likelihood that common mental disorders in adults first emerge in childhood and adolescence highlights the need for a transition from the common focus on treatment of U.S. youth to that of prevention and early intervention,” wrote the study’s author, Dr. Kathleen Merikangas, a psychiatrist and senior researcher at the National Institute of Mental Health. She did not return calls seeking further explanation.

Local community-based mental health services are often the easiest way for parents to get help. But they have been hit hard by state budget cutbacks. Last year, Glover said, 36 states reported a total cut in mental health funding of $1.3 billion, with an average reduction in each state of $35 million. That’s money no longer available to pay staff and keep the lights on at local mental health clinics.

Even when professional help is available, it can be difficult for parents to get access to it.

“For example, New York City has excellent care once you go through the system,” said Karestan Koenen, director of psychiatric-neurological epidemiology at Columbia University’s Mailman School of Public Health. “But the system is tough to get through, and for busy, overwhelmed parents who are just trying to get by, even getting into the system may be too challenging.” For parents who struggle to help their children manage a mental health disorder, there often just isn’t enough help.

“There is too much burden on the parent,” Koenen said. “Schools, churches, communities need to step up and support parents who are struggling with their children.”

Most Cancer Deaths Continue to Drop

Fewer Americans are dying from cancer. This is one main take-away from the latest report on cancer death rates and new diagnoses of cancer in the U.S. This decline is seen among men and women across all major racial and ethnic groups, and for 17 of the most common types of cancer including lung, colon, breast, and prostate cancers. Still, not all of the news from the new report is positive.

Rates of death are on the rise from the potentially fatal form of skin cancer, melanoma, in men; uterine cancer in women; and liver and pancreatic cancer in both sexes. What’s more, the data show a rise in cancers related to human papillomavirus (HPV) infection, and that too few at-risk people are getting the vaccine that can help prevent these cancers. “There is substantial good news in this report,” says researcher Edgar P. Simard, PhD, MPH. He is a senior epidemiologist in the Surveillance Research Program at the American Cancer Society (ACS) in Atlanta.

The ACS, CDC, National Cancer Institute, and the North American Association of Central Cancer Registries (NAACCR) all contributed to the new report. Overall, cancer death rates decreased by 1.8% per year among men and by 1.4% per year among women from 2000 to 2009. Death rates among children up to 14 years of age decreased by 1.8% per year.

The reasons that fewer people are dying from cancer are likely earlier detection plus better treatments, Simard says. And “in the past 10 years, targeted therapies that take into account the genes and molecular characteristics of individuals and tumors have shown promise.”Some of this decline may also be related to healthier lifestyle choices such as not smoking.

‘It Is Not Enough’
But many outside experts say that we can’t rest on our laurels just yet. “It is encouraging that the rates are going down, but we would like to see the curves dropping faster and death rates from all cancers declining,” says Leonard B. Saltz, MD. He is the chief of the gastrointestinal medical oncology service at Memorial Sloan-Kettering Cancer Center in New York City. “We would like to have as few people as possible get cancer in the first place and the highest number of people survive if they do develop cancer.”

The report does find that between 2000 and 2009, overall rates of new diagnoses of cancer decreased by 0.6% per year among men, remained stable among women, and increased by 0.6% per year in children up to 14 years of age.

Cy Aaron Stein, MD, PhD, is worried that budget cutbacks will erode some of the gains seen in the new report. He is the chair of the Department of Medical Oncology and Therapeutics Research at City of Hope Cancer Center in Duarte, Calf. “I am delighted, but it is not enough,” he says. “The real question is: Will these decreases continue in today’s financial climate? We know that as go the finances, so goes the [death] rate. There is no question that we have to cut back, because we are going to break the bank if we don’t.”

Cancer: The Good and the Bad News
“We need to build on the progress and need a better understanding of why certain cancer death rates are dropping, and a better understanding about those that aren’t,” Saltz says. These include cancers related to HPV, a sexually transmitted disease that may increase risk of cervical, oral, anal, and other cancers.

From 2000 to 2009, rates of HPV-related oral cancer increased among white men and women. In addition, rates for anal cancer among white and African-American men and women continued to rise. In 2010, fewer than half of girls aged 13 to 16 got at least one dose of the HPV vaccine, and just 32% got all three doses.

Two vaccines (Cervarix and Gardasil) are approved to help prevent most cervical cancers in women. Gardasil may protect against genital warts and cancers of the anus, vagina, and vulva. Both vaccines are available for females. Only Gardasil can be used by males. The CDC recommends that all 11- or 12-year-old girls get the three shots of either vaccine. The CDC recommends Gardasil for all boys aged 11 or 12.

“HPV is an anti-cancer vaccine. If only we had vaccines to prevent other cancers as well,” Simard says.

“We can always do better,” says Richard Smith, MD. He is a head and neck cancer specialist at Montefiore Einstein Center for Cancer Care in New York City. He says that the rise in HPV-related cancers has only just begun. “This epidemic will become more prevalent over the next number of years.”

Julian Sanchez, MD, explains the risk. He is an expert in anal cancer at the City of Hope Cancer Center. He has seen a huge increase in anal cancer in recent years. “Anal cancer is becoming a real public health problem, and we have a way to prevent it,” he says. “We need to increase awareness for the vaccine against HPV in girls and boys before they become sexually active.”

Finding a Partner for Children’s Health in Centralized Care

The Seton Children’s Comprehensive Care clinic in Austin coordinates care for medically needy children while offering family support services.

It takes a team of medical specialists to care for Anna Barkhuizen, a 9-year-old with epilepsy, cerebral palsy and significant developmental delays. Her mother, Rebecca, recalls waiting for hours in exam rooms and leaving before seeing the doctor, because Anna had grown too impatient.

“I felt like we had all of these dots with all of these specialists, but no one to connect all these dots for us,” Ms. Barkhuizen said. “Now, I feel like I have a partner in raising Anna.”

For the last year, Anna has participated in a pilot program at the Seton Children’s Comprehensive Care clinic at Dell Children’s Medical Center of Central Texas in Austin. The three-year program, now in its second year, coordinates care for medically needy children, providing access to pediatric physicians, medical specialists and behavioral health care, while offering family support services. The program’s founders hope comparative data collected from the pilot program and routine outpatient care will show that centralized coordination improves the quality of care while cutting costs.

“Typically, you put everybody through the same rigid system, and it’s not necessarily efficient or effective,” said Dr. Rahel Berhane, the medical director of the clinic. “The hypothesis is that this is much more cost-effective, so Medicaid would be able to serve more patients.”

Dell Children’s Medical Center hopes to expand the program, which gets $1.5 million annually from its parent, the Seton Healthcare Family. It has applied for $18 million through a federal Medicaid waiver that Texas received in 2011. The waiver allows the state to invest nearly $10 billion in federal and local financing to transform health care delivery across Texas. More than 1,300 projects have been proposed, and federal approval is expected in May.

The program has enrolled 130 children, three-quarters of whom receive Medicaid. Half speak only Spanish.

Preliminary data shows that the program has halved the rate of emergency room visits for these children.

“This project is a good example of how the waiver intends to help children and their families by improving how we deliver critical and comprehensive health care,” Linda Edwards Gockel, a spokeswoman for the Texas Health and Human Services Commission, said in an e-mail.

Medicaid does not reimburse providers for coordination services. But if the program receives federal approval to participate in the waiver program, expenses not traditionally reimbursed by Medicaid could be reimbursed.
Dr. Berhane said important lessons from the program’s first year could be applied across a wider population if the program received financing through the waiver.

“Since we’ve been going to this clinic, it’s just been an answered prayer,” Ms. Barkhuizen said. “It’s become her one-stop shop for medical care.”

20 Questions to Ask Before Hiring a Home Care Agency

This helpful guide provides a checklist of questions you should ask when interviewing a potential care provider for in-home care. Please contact Sydney’s Voice with any questions you may have during your selection process.

  1. Does your agency offer the opportunity to meet your caregiver prior to receiving their services?
  2. Does your agency carry liability coverage?
  3. Do you conduct national and local criminal background checks and driving records of all employees? Are personal and professional references required?
  4. Are caregivers employees of your company (not contractors) and protected by Workers’ Compensation?
  5. Are caregivers bonded and insured for theft?
  6. Do you have a systematic method for tracking caregiver arrival and departure times at a client’s home?
  7. Do you provide 24/7 telephone service?
  8. Do you provide backup coverage in the event a caregiver cannot make it to work?
  9. Does your agency require a minimum number of hours per shift? If so, what is the minimum?
  10. Do your services include personal care such as bathing, incontinence care, and mobility assistance?
  11. Does your agency provide transportation services for clients?
  12. Does your agency maintain a business office where I can meet you and the office staff?
  13. Do you provide in writing the care services provided, and clearly describe all rates and fees?
  14. Do you have an administrative staff I may contact for information? Do you have a nurse on staff?
  15. Does your agency make periodic supervisory visits to a client’s home?
  16. Can you provide documentation explaining the client’s rights, your code of ethics, Workers’ Compensation and HIPAA compliance?
  17. Can you provide emergency monitoring systems, medication solutions and other safety technology?
  18. Will your agency provide a free in-home assessment prior to starting service?
  19. How quickly can your agency initiate service?
  20. Are you certified or licensed by any government agency to provide homecare?

Autism and Employment: An Inspiring Success Story

Since Jodi Murphy’s son was 2, she had a hunch that he might be on the autism spectrum, but it wasn’t until Jonathan was 13 that he was formally diagnosed with Asperger’s Syndrome. A bright boy, it was clear to Jodi that with the right interventions, her son could learn to function independently in society. But when she identified the best resources and services for her son, it was difficult to access them because Jonathan’s disability was not considered ‘substantial’ enough.

As a child, he showed interest in (and a talent for) acting, and Jodi encouraged him to audition and perform in community theater. When he was a young teen, Jodi  wondered how she could help Jonathan use his talent as an actor  as a possible career as he approached adulthood. She encouraged him to take Voice Over classes when he was 16 and…. Drumroll….

Jonathan, now 27, has been in the Voice Over business for the last three years. He has an agent who brings him auditions and work and he works with clients directly. The Murphy’s have a recording studio in their home that they created out of a walk in closet. Jodi helps Jonathan with his administrative duties and marketing, allowing him to focus on his strengths and not become overly anxious over tasks that overwhelm him.

Jonathan is living in an independently about 5 miles away from his family’s home, where he works and auditions. Jonathan also performs on stage and does some on camera commercial work.

Now Jodi is pooling her family’s talents – Jonathan’s voice over, her daughter’s writing, her husband’s technical  acumen and Jodi’s marketing skills – and collaborating with creative professionals to develop a children’s book app series for the iPad. “We are sharing Jonathan’s real life experiences in a unique, respectful and, hopefully, entertaining way,” says Jodi,  “to share how someone on the spectrum overcomes obstacles, triumphs over social anxieties, and thrives… quirks and all!”

The series Geek Club Books and the app will make it’s debut in Fall of 2013. In the meantime, the collaborators are building a community that embraces its “geekiness” and are recruiting role models for the 8-12 year bunch. Each week, the “I am unique, I am a geek” forum announces a twenty-something ‘Geek of the Week’ who shares some insights that are just endearing and inspirational.

“My son’s life has been quite the adventure, says Jodi, ”from being the boy that paced in the corner to being a social outcast, bullied and reclusive, to commanding a stage, making people laugh with him (and not at him), finding friends who like him for him, and earning the respect of professionals in his industry. He still struggles with seemingly simple daily living skills, but he perseveres and never gives up.”

Hospital to Home: The Importance of Transitional Care

After a long or even a short hospital stay, anyone appreciates the value of sleeping in one’s own bed. No one to wake you during the night, no more pokes, prods or beeps and buzzes. Just you – snuggled up under your own covers within the familiar sights and smells of home.

As wonderful as that sounds, there are a few things to consider regarding transitioning from a hospital back into the home. For many seniors, this process may be complicated depending on their circumstances.

Seniors are of special concern during this phase, especially those who suffer medical conditions and are required to take different medications at varying times of the day. Sending someone from a care facility such as a hospital, where around-the-clock monitoring is prevalent, to an environment where little or no interaction occurs requires advance planning to ensure the transition is smooth and safe.

Some things to consider include:

  • The mobility of the senior
  • Medical conditions that may need monitoring
  • Administration of medicine(s)
  • Future appointments with health care providers
  • Nutrition

Attention needs to be given to the mobility of the person going home. Challenges in that area should be addressed and solved before less-mobile seniors arrive home. Ensure walkways in the home are clear. Remove trip hazards such as rugs. Rearrange extension cords so they are not a hazard. Handrails in the bathroom can prevent falls.

Seniors recuperating from an illness may need assistance identifying symptoms in the days and weeks after coming home from the hospital. Ask friends and relatives to take turns visiting the senior each day to ensure the senior’s health is on the rise and not declining.

Proper administration of medications is essential for seniors required to take them even for a short period of time. Sometimes, if multiple medicines are needed, seniors may need help remembering time schedules. If personal help is unavailable, make the senior a daily calendar with each hour depicted. Pill dispensers can be used for this purpose, as well, and are the best option for ultimate safety to keep medications organized and aid in preventing accidental overdose.

Often after returning home from a hospital stay, visits to health care providers are scheduled to monitor the progress of those on the mend. Help seniors remember these appointments by penciling them in your own calendar. Call seniors with friendly reminders. Accompanying them to these scheduled visits further ensures these obligations are met and can also help keep you in the loop regarding any new medical care regimens that may be directed.

Seniors returning home from a hospital stay may be on a limited diet. Even if they are not, preparing and eating dinner for themselves may seem overwhelming at first. Help out by grocery shopping or preparing easy-to-heat meals which seniors can make with little or no fuss. Maintaining balanced nutrition is critical for seniors, but can be especially important for those who have had recent health issues.

Following the above tips can help pave the way to a positive transition from hospital to home. Successful transitions help eliminate returns to the hospital which are common when transitions are not well planned. If you are unable to assist a senior in need, now might be the time to hire a home health care provider, such as Comfort Keepers®. Comfort Keepers® attend to seniors in need on a full or part-time basis performing such duties as cooking, light cleaning, running errands and simply by providing company to keep the senior’s spirits up.

Autistic Children Often Wander Off

Almost half of autistic children go missing from caregivers at some point, usually putting themselves in danger, researchers found.

More than half of them were gone long enough to cause concern, 65% had close calls with getting hit in traffic, and 24% were at risk of drowning during their escapade, according to an online survey by Paul A. Law, MD, MPH, of the Kennedy Krieger Institute in Baltimore, and colleagues.

Risk of elopement rose with greater autism spectrum disorder severity – 9% for every 10 points on the Social Responsiveness Scale T score, they reported in the November issue of Pediatrics.

The frequency of “elopement” seen in the study may account in part for the roughly doubled mortality with autism spectrum disorder compared with the general population, the group suggested.

“These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur,” they wrote.

Their study surveyed families of 1,218 children with autism spectrum disorders, with 1,076 unaffected siblings, using a questionnaire administered through the Interactive Autism Network online research database and registry.

Half of the affected children had autism, while another 19% had Asperger disorder. The rest had other autism spectrum disorders.

The prevalence of having wandered off at least once after age 4 (a cutoff set because running from safe spaces and adult supervision is more typical of toddlers) was 49% overall.
That rate was much lower among unaffected siblings than the children with autism spectrum disorders at all ages. Respective rates, for example, were:

  • 11% versus 46% at ages 4 to 7
  • 1% versus 27% at ages 8 to 11

“Advocacy groups have reported that children with ASD are more difficult to keep safe because of their wandering behavior, and that parents fear being viewed as neglectful when these children succeed in escaping safe spaces,” the researchers noted.

However, given the low rate of wandering off among siblings, “it is doubtful that, as a group, these parents are remiss in keeping children safe,” they pointed out. The situations were highly stressful for parents, with 43% of those whose child eloped saying it kept them from sleeping well at night and 62% saying it kept the family from enjoying activities away from home.

Almost half of autistic children go missing from caregivers at some point, usually putting themselves in danger. The risk of elopement rose with greater autism spectrum disorder severity.

More than half of the parents with experience in this regard said wandering off was one of the most stressful behaviors they had to cope with as a caregiver for their child. Children, on the other hand, appeared to largely enjoy running off. Parents described their autistic child as a “happy, playful, or exhilarated” during the event, although those with Asperger disorder often appeared more anxious.

“In either case, much of the behavior appears goal-directed,” the investigators noted. Half of the escapees appeared focused on going somewhere or doing something, while only about 10% seemed confused, in a fog, or sad and lost.

Children with autism spectrum disorder were most likely to wander off from home (74%), although stores and schools were common locations as well (40% and 29%, respectively). At their peak, 35% of the children were trying to run off at least once a week and 29% made attempts multiple times a day.

The researchers cautioned that the findings may not generalize to all children with autism spectrum disorders because the families chose to participate in the registry, and the survey appeared to have some self-selection bias, with well-educated parents and a greater proportion being white.

Also, the study included only families with a living autistic child, so fatalities could not be estimated.

The Pros and Cons of Long-Term Care Insurance

One of the hot-button topics in retirement planning is the issue of long-term care insurance. In a recent article in the Wall Street Journal, a health administration wonk and a nursing home reform advocate debated the pros and cons of long-term care insurance, and they both made some worthwhile points.

Having long worked in the field of in-home care, we have frequently seen families struggle with the best way to meet the needs of an older loved one. Financial realities are often a significant part of their concerns. The right health insurance can be a godsend, but long-term care insurance is not a one-size-fits-all proposition.

The Long-Term Care Insurance Debate
In the Wall Street Journal debate, the argument for long-term care insurance can be summarized as follows:

Most older individuals will need some type of long-term care eventually. Costs of long-term care can run up to $250 or more per day, and an individual’s lifetime savings can be depleted within a short time. If care is needed for several years, expenses can no longer be paid out of pocket. Long-term care insurance provides coverage for as long as needed. Most middle-income families need the safety net that long-term care insurance can provide.

The argument against the value of long-term care insurance is, in summary:
Long-term care insurance is too much of a gamble, and the industry uses fear tactics to generate demand. Most people who need long-term care only need it for a short period of time, and they are better off boosting their savings rather than paying premiums. The long-term care insurance industry bases its model on high costs, low risks, and relatively low benefits.

Determining What Is Best for Your Family
Based on research found in the above article and our own experiences in the senior care field, we offer a few suggestions for making a decision. First, start with a basic cost-risk-benefit analysis:

Cost of care – Depending upon the type of care needed, annual costs may vary significantly. Nursing home costs can run over $80,000 per year, while adult day care costs are closer to $15,000 per year. At-home care costs are not insignificant, with daily home health care costing over $40,000 per year, for example.

Degree of risk – What is the likelihood that you or a loved one will eventually need long-term care? Some data indicates that about 70% of individuals who reach the age of 65 will need it at some point. Regarding skilled nursing care, however – the most costly long-term care option, only around 3.7% of older Americans live in nursing homes. And only about 6% of older adults remain in a nursing home for more than two years.

Benefits provided – Consider the types and amount of coverage offered, as well as any exclusionary periods. The majority of long-term care policies exclude nursing home coverage for the first 90 days of care – luckily, around 60% of older adult nursing home admissions receive discharges within 90 days. Most policies don’t pay 100% of the daily rate for nursing home care, either, leaving an average gap of around $100 per day.

Now take a closer look at your own individual situation before you make a final decision about coverage, and be prepared to answer the following questions:

  • What is your likely level of need for long-term care, based upon your personal and family medical history?
  • To what extent will you be able to rely on extensive natural supports in the future; e.g., nearby relatives and social network?
  • Are you a consistent and dedicated saver? Many individuals are more likely to pay an insurance premium than to place a comparable amount in a monthly savings account.
  • How risk-averse are you? The odds are in your favor if you have adequate savings, but the risks are great if you miscalculate the amount and duration of care you’ll need.
  • Do you understand facts and misconceptions about long-term care? For example, many individuals incorrectly believe that Medicare covers most ongoing long-term care expenses. Others see Medicaid as a viable coverage option, but states are cutting back on benefits and strict income limits are imposed for coverage.
  • Do your current income and/or savings make you a good candidate for long-term care insurance? Some experts say that individuals who make at least $250,000 per year and have significant savings may be better off relying upon a personal savings plan. By the same token, individuals with extremely limited resources may do best to rely upon Medicaid. If you have mid-level income and savings, you may be a better candidate for long-term care coverage.

Finally, after you’ve weighed the facts, discuss your decision with a financial planning specialist or attorney. With the proper due diligence, you’ll make the decision that’s right for your needs.