Category Archives: Disabilities

Does selling your home affect eligibility for assisted living?


Q. I’m a realtor who’s listing a client’s home. She is on Social Security and is moving into assisted-living housing. Will the proceeds from the sale of her home affect her eligibility for housing, which is based on her income?

A. This is an unusual question because assisted-living facilities typically do not have special eligibility criteria for low-income residents, experts say. Continue reading


Inactivity linked to chronic disease in adults with disabilities – CDC


CDC – Vital Signs

Icon of a visually impaired person with a service dog  3x

Adults with disabilities are 3 times more likely to have heart disease, stroke, diabetes, or cancer than adults without disabilities.

Icon of man and woman1 in 2

Nearly half of all adults with disabilities get no aerobic physical activity, an important health behavior to help avoid these chronic diseases.

Icon of a doctor and a person in wheel chair82%

Adults with disabilities were 82% more likely to be physically active if their doctor recommended it. Continue reading


Jails house 10 times more mentally ill than state hospitals, report


Screen Shot 2014-04-08 at 7.26.27 AMBy Jenny Gold

April 8, 2014 – In 44 states and the District of Columbia, at least one prison or jail holds more people with serious mental illnesses than the largest state psychiatric hospital, according to a report released Tuesday by the Treatment Advocacy Center and the National Sheriffs’ Association. Continue reading


Health law helps states move elderly and disabled from nursing homes to home care


01_17_Chart_Health_Funding_thumbnailBy Christine Vestal
Stateline Staff Writer

In New Hampshire, Medicaid pays for in-home care for nearly all of its developmentally disabled residents. For frail elders, the opposite is true. Most wind up in nursing homes.

To remedy this imbalance, New Hampshire is taking advantage of Affordable Care Act funding for a program aimed at removing existing barriers to providing long-term care in people’s homes and communities.

Known as the Balancing Incentive Payments Program, it is one of several ACA provisions designed to keep as many people as possible out of costly institutions. Continue reading


Health law adds coverage needed by people with developmental disabilities


PrintBy Michelle Andrews

January 14, 2014 – A little remarked upon requirement in the health law expands treatments for people with cerebral palsy, autism and other developmental disabilities. But some advocates and policy experts are concerned that insurers may find ways to sidestep the new requirement.

The health law requires that individual and small group plans sold on or off the health insurance marketplaces cover 10 essential health benefits, including “rehabilitative and habilitative services and devices.” Continue reading

tacuin women

Women’s Health – Week 14: Dementia


From the Office of Research on Women’s Health

Dementia is the loss of thinking, memory, and reasoning skills to the extent that it seriously affects a person’s ability to carry out daily activities. Dementia is not a disease itself but a group of symptoms caused by certain diseases or conditions.

The most common form of dementia is Alzheimer’s disease. People with dementia lose their mental abilities at different rates and may eventually need total care.

Symptoms of dementia
  • Being unable to remember things.
  • Asking the same question or repeating the same story over and over.
  • Becoming lost in familiar places.
  • Being unable to follow directions.
  • Getting disoriented about time, people, and places.
  • Neglecting personal safety, hygiene, and nutrition.
  • Changing clarity in memory, language, and reasoning.
  • Changing moods and personality.
  • Losing the ability to perform daily activities like driving a car or handling money.

A person with dementia should be under the care of a health care provider. The health care provider might prescribe medications that may help maintain thinking, memory, and speaking skills, and that may lessen certain behavioral problems for a few months to a few years.

Family members and friends can help people in the early stages of dementia to continue their daily routines, physical activities, and social contacts. If you are concerned that you or someone you know has a serious memory problem, talk with your health care provider.

There are now drugs to treat diseases such as Alzheimer’s disease. Although these drugs do not stop the disease or reverse existing brain damage, they may be able to lessen symptoms of the disease for a time. This may improve a person’s quality of life, ease the burden on caregivers, or delay admission to a nursing home.
For more information:

‘Habilitation’ is among new Obamacare benefits


ACA health reform logoBy Michael Ollove
Stateline Staff Writer

“To rehabilitate,” according to the Merriam-Webster dictionary, means “to restore to a former capacity.”

But what if that capacity — be it walking or talking or brushing one’s teeth — was never there in the first place? In that case, you aren’t talking about “rehabilitation” but “habilitation.”

People need habilitation when they have a congenital defect or disease that impairs the development of basic life skills. For example, autism may leave a child unable to speak. Cerebral palsy may result in language deficits and severe physical limitations. Birth defects may leave a child deaf.

Thanks to the Affordable Care Act (ACA), habilitation services will now be widely covered for the first time in private insurance plans.

Rehabilitative and habilitative services are among the 10 “essential benefits” that must be provided by all plans sold on all the state and federally run health insurance exchanges. Starting in 2014, all individual and small group health policies sold outside the exchanges also will have to cover habilitative services.

But as is the case with some of the other “essential benefits,” the federal health law mandates coverage of habilitation services without spelling out exactly what that means. The states, together with insurers and advocacy groups, will have a big say in what, and how much, is covered.

The computer deficiencies that have plagued the exchanges since they opened on Oct. 1 have further muddied the picture, since few people have read what insurers on the exchanges are offering. “How this all plays out very much remains to be seen,” said Daniel Brown, senior state policy analyst for the American Occupational Therapy Association.

The number of people who might benefit from such services also is uncertain, Brown said. However, 15 percent of children between the ages of 3 and 17 have one or more developmental disabilities, according to the Centers for Disease Control and Prevention.

The cost of habilitative therapy varies widely, but can be quite expensive. One form of therapy used to treat those with autism, “applied behavioral analysis,” can cost $50,000 or more a year.

A Popular Addition

Before the ACA, habilitative services were inconsistently covered in health insurance plans. Most insurers took the view that teaching skills to the developmentally disabled was an educational matter rather than a health care concern. But as the disabled movement has gained influence over the last 50 years, that view has become far less than universal, even among insurers.

For one thing, it has become clear that financially strapped school systems do not have the resources or expertise to meet the habilitation needs of their students. In response, Medicaid in 1989 added habilitative services to its benefits menu, and dozens of states began to require insurers operating in their states to offer habiliative benefits. However, the coverage requirement varies widely from state to state, and many states have limited it to children with autism.

That was the situation when the ACA was being crafted in 2009 and 2010. For part of that time, people with disabilities had a formidable ally on Capitol Hill in Sen. Edward Kennedy of Massachusetts, who died in August 2009. Kennedy, whose sister Eunice Shriver founded the Special Olympics, was a longtime champion of services for the developmentally disabled.

Though the ACA as a whole remains controversial, opponents of the law have not criticized coverage of habilitative services. But advocates are concerned that the federal law leaves it to the states to determine just how robust habilitative services have to be.

Fear of Limitations

When the details of the insurance plans sold on the exchanges finally emerge, advocates will scrutinize the limitations imposed on the habilitative services offered.

For example, they would oppose a lifetime cap on the number of therapeutic visits patients are entitled to under habilitative services. They also are wary of combining rehabilitative and habilitative visits under one cap, because a person could exhaust all visits for habilitation and have nothing left for rehabilitation. Brown said children with congenital problems sometimes suffer falls or other accidents that require rehabilitation.

“We wouldn’t want (insurers) to say, if you get rehab you don’t need hab,” said Laurie Alban Havens, who advocates for insurance policy changes for the American Speech-Language-Hearing Association (ASHA), a professional organization representing various types of therapists.

Advocates also will be surveying plans to make sure “maintenance” services are included. After reaching a certain level of ability, a person typically needs help to keep that ability. ASHA and similar organization argue that maintenance often requires skilled therapy rather than the custodial level of care that insurers prefer to provide.

Many states, including Arkansas, require insurers to provide the same level of habilitative benefits as they do rehabilitative benefits.

“We wanted parity but the question was, ‘what does that mean?’” said Cynthia Crone, a deputy insurance commissioner in Arkansas. For example, an insurance plan might provide 60 days of in-patient rehabilitation without specifying whether habilitation, which doesn’t usually require in-patient care, is covered.

However the states interpret habilitative services, it will certainly be subject to challenge by consumers, regulators and the courts. Jan. 1, when the ACA officially takes effect, will mark only the start of that process.

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Stateline is a nonpartisan, nonprofit news service of the Pew Center on the States that provides daily reporting and analysis on trends in state policy.


Think all caregivers are unhappy? They’re really not


A younger man holds an elderly man's handBy Nancy Shute, NPR News

This story comes from our partner ‘s Shots blog.

The stereotype of caring for a family member is that it’s so stressful it harms the caregiver’s health. But that’s not necessarily so.

Studies are conflicted, finding that caregiving can harm or help the caregiver. Here’s one on the plus side: A study finds that people who care for a family member live longer than similar people who aren’t caregiving.

The scientists didn’t ask the caregivers why they might be healthier and presumably happier than similar people who weren’t caring for someone. But the 3,503 people who participated represented a broad swath of the American public and may be a better representation of the caregiving experience overall.

Just 17 percent of the people surveyed said they had high levels of caregiving strain, and the majority put in fewer than 14 hours of care a week.

“The burden of caregiving certainly can be overwhelming and negative to health,” says David Roth, director of the Center on Aging and Health at Johns Hopkins University and lead author of the study, which was published in the American Journal of Epidemiology. “But those are not necessarily the typical experience.”

The study data was originally gathered for a big multiyear study on stroke risk, but the people being cared for in this study had a broad range of health problems. The caregivers themselves were age 64 on average, more likely to be female and either white or African-American.

Family caregivers were 18 percent less likely to die than non-caregivers over six years, the researchers found.

Something must have made life better for the caregivers. But what? To help find out, we called up Leah Eskinazi, director of operations for the Family Caregiver Alliance in San Francisco.

“There are people who find caregiving very rewarding,” Eskinazi told Shots. “They feel really good that they can give back to Mom, for example, because Mom was really there for them when they were growing up. Maybe they weren’t the best kid, but as they’ve aged they can have a more balanced healthier relationship and heal some of those wounds.”

Context is everything, Eskinazi says. Caring for someone with dementia can be more stressful and depressing because the person is facing a long inevitable decline. “You’re caring for someone who can’t voice their preferences,” she says. “You’re making decisions for another person and for yourself, and that can last for a long time. It’s tough.”

But only about 10 percent of family caregivers are tending someone with dementia, other studies have found.

Caring for someone after a stroke, by contrast, can be very positive. “There’s a lot of energy going into helping that person recover,” Eskinazi says.

And in many cases the person being cared for is in a position to be grateful. “To have someone stick by you, or a group of people stick by you, that’s pretty cool,” Eskinazi says. “It gives you an opportunity to say thank you.”

Spouses typically expect to be taking care of their mate in old age, but adult children don’t always prepare for that possibility — or try not to think about it.

People tend to avoid the Family Caregiver Alliance’s booth at health fairs, Eskinazi admits. “People don’t really want to think about it. It’s time, it’s emotion and it takes energy.”

But this latest study points out that caregiving isn’t all a big minus for the caregiver — something to prepare for, perhaps, but a normal, often rewarding part of life.

This article was reprinted from with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.


Sequester hits special education like ‘Ton of Bricks’

Photo of Vierdrie

Photo of Vierdrie

By Adrienne Lu
Staff Writer

Since the first day of class for most schools in Michigan last week, Marcie Lipsitt’s phone has been ringing nonstop with parents distraught about cuts to their children’s special education services.

A new round of special education cuts were taking hold, prompted by a 5 percent reduction in federal funding of the Individuals with Disabilities Education Act (IDEA), said Lipsitt, a longtime advocate for disabled children and co-chair of the Michigan Alliance for Special Education.

Lipsitt said it means that many schools have eliminated resource rooms where children can go to get help in areas such as math, reading, writing and organizational skills.

Many schools will have fewer speech, occupational or physical therapists, along with social workers and school psychologists, which means students who previously received speech therapy twice a week might only receive it once week, for example.

And in some general education classrooms that had two teachers – one for the whole class and one specifically to support students with special needs – the special education teacher has been eliminated.

Estimated reductions in dollars in federal funding to the states in fiscal year 2013 for Individuals with Disabilities Education Act Part B Grants, following 5 percent sequestration cuts.









































































































Source: U.S. Department of Education

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“For Michigan, it hit like a ton of bricks,” Lipsitt said. “Conditions are eroding and children are not being allowed to become taxpayers. They’re not being given access to independence, being productive, being ready for a global workforce.”

Across the country, advocates for children with disabilities are grappling with the impact of sequestration, the automatic budget cuts that kicked in when Congress failed to reach an agreement to reduce the federal budget. Although the cuts took effect March 1, the impact did not reach schools until the start of the current school year because of the way many education programs are funded.

Experts agree there is little hard data on the impact of the budget cuts on special education. The U.S. Department of Education estimates the sequester cut about $579 million in federal funding for IDEA Part B, which supports students age 3-21 with specific learning disabilities, speech or language impairments, intellectual disabilities, autism or emotional disturbances.

The National Education Association estimates that if states and local school systems did not replace any of the funds lost through sequestration, nearly 300,000 students receiving special education services would be affected. The union estimated up to 7,800 jobs could be lost as a result of the federal budget cuts.

All told, 6.5 million disabled children from ages 3-21 received services funded by the IDEA in the fall of 2011, the most recent number available.

Tricky Funding Formulas

It is unknown how many states or schools districts will replace some or all of that money from other sources, such as new tax revenues or cuts to other programs. But they may hesitate to replace federal funding even if they have the resources.

That’s because by law, states and school districts that raise their funding for special education and then later reduce it, after adjusting for enrollment and other factors, can see their funding from the federal government cut.

That requirement, known as maintenance of effort, means that even if the federal government eventually replaces the money cut through the sequester, school districts will be on the hook to spend more than they did before the automatic federal budget cuts.

Because of the maintenance of effort requirement many school districts have worked hard even through several years of state budget cuts to preserve special education funding to avoid risking their federal special education funding.

Noelle Ellerson, associate executive director of public policy and advocacy for AASA, the School Superintendents Association, said that as a result, “Over the course of the recession, the cuts in a school district’s budget have disproportionately been on general education students,” although disabled students are often affected along with everybody else by reductions in services to general education students, such as larger class size.

But in a survey by AASA earlier this year on the impact of the recession on schools, more superintendents indicated that special education spending would decline for the first time in the nearly five years the survey has been conducted.

Ellerson said that in previous years, school systems were able to cover the cuts in federal funding, but superintendents indicated this year they can no longer do so because of continuing recessionary pressures and the depth of the sequestration cuts.

Those cuts further exacerbate the federal government’s chronic underfunding of its contribution toward the education of students with disabilities.

Under the IDEA, the federal government committed to giving states funding for up to 40 percent of the difference between the cost of educating a disabled student and a general student.

The most the federal government has ever given the states is 18.5 percent in 2005 (aside from a one-time infusion of economic stimulus funding in fiscal year 2009), and the figure has been declining since, according to Joel Packer, executive director of the Committee for Education Funding, a coalition of education organizations. Under the sequester, the federal share fell to 14.9 percent, the lowest federal contribution by percent dating to 2001.

Federal funding aside, local school systems are obligated by law to provide children with disabilities with a free appropriate education.

“It doesn’t matter what the feds send down to the locals and the states in federal support, the law requires that states and local school districts identify and serve every student that they deem to be eligible and in need of special education,” said Candace Cortiella, director of The Advocacy Institute. The institute is a nonprofit that provides training for special education advocates and runs the web site IDEA Money Watch, which tracks federal funding for special education.

“There can be no consideration given to how much money there is to spend. That really puts the states and the local districts in quite a precarious situation,” Cortiella said.

What States Are Doing

The impact of the sequester on special education varies from state to state and even district to district.

In Virginia, most school districts have been able to weather the special education funding cuts so far by not replacing teachers who leave, according to John Eisenberg, assistant superintendent for special education and student services. Many school systems have also reduced or eliminated staff development, which is critical in special education.

“There’s constant change in the field in terms of making sure folks are up to speed and are using research-based practices for students,” Eisenberg said. “As we have learned more and more about things like autism, the field has changed. Getting teachers trained in the most recent research-based practices is critical.”

Virginia schools have also reported big cuts in budgets for materials and technologies to support students with disabilities, which can include electronic devices to help nonverbal students communicate, technology to help students who are hearing-impaired and computers to enlarge text, for example.

In Florida, Miami-Dade and Palm Beach counties found the money to keep their special education programming intact. But nearby Broward County this year eliminated five of 11 behavior specialists, 10 program specialists and an assistive technology position, according to Mark Halpert, director of the Florida Advocacy Coalition for Learning Disabilities.

Halpert worries about the damage a second year of sequestration could inflict.

“These kids are smart – they learn differently, have challenges and can be enormously successful,” Halpert said. “We owe it as a society to help them succeed.”

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Stateline is a nonpartisan, nonprofit news service of the Pew Center on the States that provides daily reporting and analysis on trends in state policy.

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Kids with costly medical issues get help, but not enough

medically complex kids

Katie Doderer, with dad, Mark, and mom, Marcy (Photo by Jenny Gold/KHN).

By Jenny Gold
KHN Staff Writer

This story was produced in collaboration with NPR

Katie Doderer is a very poised 15-year-old with short blond hair and a wide smile.

She’s a straight A student who loves singing, dancing and performing in musicals.

This could be considered something of a miracle.

“I have a complex medical condition known as congenital central hypoventilation – blah — syndrome. CCHS,” Katie explains, stumbling on the full name of her malady. “Basically my brain doesn’t tell me to breathe. So I am reliant on a mechanical ventilator.”

She also has a pacemaker to control her heart rate, and she has lupus. And though CCHS is very rare – Katie is one of only 700 children in the world diagnosed with it – she is part of a growing segment of the population that the health care industry calls “medically complex children.”

Katie Doderer, with dad, Mark, and mom, Marcy, has a rare medical condition that requires 24-hour use of a ventilator (Photo by Jenny Gold/KHN).

More than 2 million kids in the US are born with multiple chronic illnesses that often require frequent trips to the hospital. Problems include cystic fibrosis, muscular dystrophy and cerebral palsy, among many other diseases. As medicine has advanced, more very sick children survive past infancy, and even thrive.

The number of medically complex kids is growing at a rate of about 6 percent a year, according to the Children’s Hospital Association. And that comes with a heavy price tag for state and federal budgets.

Million Dollar Baby

Katie’s care has been expensive, but her family is in a better position to deal with the challenges than most: Her mom is the CEO of Arkansas Children’s Hospital.

“Katie hit a million [dollars] in her first year of life,” says Marcy Doderer, Katie’s mother. Katie used to require 24-hour nursing; now the nurse only comes at night, but it still costs almost $75,000 a year, by Marcy’s estimate. It’s a service that most private insurance doesn’t cover. It is, however, paid for by Katie’s Medicaid coverage—even though the family is well off.

“The stereotypical image that comes to mind is a very poor family with a child on Medicaid,” says Marcy. “But it is important to know that in most states there’s some sort of program that is there to supplement private health insurance for a truly medically complex child.”

The sickest 2 million kids account for about 40 percent of Medicaid’s total spending on children. Many of these children have a combination of private insurance and Medicaid, and it can be challenging to coordinate care and coverage. Marcy Doderer, who until recently was the CEO of the children’s hospital in San Antonio, Texas, acknowledges that her job gives her family an advantage.

“I know how to navigate the system,” she says. “I know how to find ways to get what my child needs that the average family would never know how to do.”

Still, Marcy has seen first hand all the ways that the medical system can fall short for patients like Katie. She says Katie’s care is often scattershot.

“In our current health system in San Antonio there are no links between the medical records of the different specialists,” Marcy says. “There is not a single person other than my husband really who is paying attention to how care is coordinated for a kid like Katie.”

‘What A Waste’

Katie’s dad, Mark Doderer, is her main caregiver. He has traveled with her more than 20 times to Chicago to see the doctors who specialize in Katie’s rare disease.

But Katie’s Medicaid doesn’t travel with them: The hospital in Chicago doesn’t accept the Medicaid Katie got from Texas. And that care isn’t coordinated. Mark says the doctors in San Antonio and Chicago often want to do the same test twice, like an EKG.

“They’ll just repeat it, because they want the EKG done according to their rules and that it’s in their records,” he says. “What a waste.”

Mark remembers a mix up between doctors that ended with Katie being prescribed a medication that interfered with another she was already on. The result could have been fatal. Marcy Doderer says hospitals can do better.

At the Children’s Hospital San Antonio, Doderer says she tried to use her experience as a mom to improve things by focusing on a child-centered team approach, even hiring special care coordinators in charge of managing care for each of the sickest kids.

The Children’s Hospital Association has been lobbying Congress to help create a special network within Medicaid to coordinate care between hospitals, too.

“Our hope is to create legislation that would identify these kids in a separate bucket, so to speak, so you can build bridges between the state Medicaid problems to make care more seamless for kids who have to cross state lines,” Doderer says.

Improving the communication between doctors and hospitals to limit repeat tests and unnecessary procedures for medically complex children could save Medicaid $13 billion over 10 years, according to a recent study by CHA.

But Matt Salo, who runs the National Association of Medicaid Directors, worries that while making care more efficient is a worthy goal, it could come at a price.

“It’s important to think about health care spending not as competing for infinite dollars where everyone gets everything they want,” says Salo. “Health care is, unfortunately, a limited pool of funds.

So carving out additional dollars for one group may well mean that another group gets less—low-income frail seniors or individuals with physical disabilities.”

In her new role running the children’s hospital in Little Rock, Doderer says she’ll continue her push for better care. For Katie, it means a new school, new friends and a new set of doctors.

“She has challenging days,” Marcy says of Katie. “It’s not easy walking around with a ventilator, and you don’t get to go swimming or have normal sleepovers with your friends. But she has traveled internationally, she snow-skis, she plays the harp.”

Up next? Learning to ride a bicycle, ventilator and all.

This article was reprinted from with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.


Obamacare presents complex choices for People with disabilities

KCFR Whitney  by kristen kidd 300

Film student Bryce Vernon (center) at Talking with Technology Camp in Empire, Colo., with speech language pathologists Jill Tullman and Mendi Carroll (Photo by Kristen Kidd/KCFR).

The Affordable Care Act has set new standards — called essential health benefits — outlining what health insurance companies  must now cover.

But there’s a catch: Insurance firms can still pick and choose to some degree which specific therapies they’ll cover within some categories of benefit.

And the way insurers interpret the rules could turn out to be a big deal for people with disabilities who need ongoing therapy to improve their day-to-day lives.

Bryce Vernon is a 20-year-old film student who lives in Los Angeles and has cerebral palsy.

He speaks only with the aid of a special computer mounted to his wheelchair that tracks his eye movements.

Using his eyes, Vernon can indicate on a screen what letters and words he wants the computer’s voice to say.

It’s amazing technology, and Vernon gets a lot more out of it with help from speech-language pathologist Jill Tullman.

“Now Bryce, I’m want to show you this super cool random button I think you’re going to love,” Tullman tells him during a therapy session at a special camp for young people who use the technology. Vernon’s parents paid out-of-pocket for him to attend the camp.

Tullman helps him pre-load several different ways of saying goodbye.

“Bye, later dude, later, bye, I’m out of here, see ya later,” Vernon says, testing it out.

In the parlance of health policy, the work Tullman is doing with Vernon is called “habilitative services.” It’s different from the more familiar sort of rehab people often get after an injury or surgery.

Habilitative services are for people who can benefit from one-on-one time with a therapist to improve daily living skills. But such services can be expensive, and not all insurance plans have covered them.

The Affordable Care Act is changing that, says health economist Lisa Clemans-Cope with the Urban Institute.

“You’re much more likely to find these benefits in a plan in the individual market [starting in 2014] than you would be today. Far more likely,” says Clemans-Cope.

This is because “habilitative services” are included within the 10 categories of essential health benefits the ACA will require in those new plans.

Still, while some categories are straightforward — such as maternity care and preventive care — the category including habilitative services leaves more room for interpretation.

For instance, insurers could choose to cover physical therapy for someone with a broken bone, but not cover long-term support services for chronic conditions, such as speech therapy for kids with developmental delays.

Clemans-Cope says some insurers may arrange their benefits in a way that discourages people with expensive chronic conditions from signing up with them.

And, she says, people who want to have specific therapies covered are going have to slog through some fine print to figure out if they’ll actually benefit from a particular policy. (The new policies will start to go on sale this fall and go into effect beginning Jan. 1, 2014.)

“This is a big improvement, but we should emphasize that it’s not totally fixed,” Clemans-Cope says. “And people are really going to have to get help to decide which plans cover the benefits they need. ”

Whether a person will be able to get the new therapy benefits also depends on where they live. The level of benefits insurers have to provide in each category is based on a model policy in each state, and some of those model policies are a lot more generous than others.

Jill Tappert, an activist in Colorado for people with disabilities, says a lot of details still need to be sorted out before she’ll be able to say whether the health care law has improved things much.

“I certainly hope the way the Affordable Care Act is implemented is a game changer for people in the disabilities community. It can be,” says Tappert, who spent years fighting for habilitative service coverage for her daughter who has autism. “The opportunity is there for policy makers to vastly improve lives.”

Barbara Vernon, Bryce’s mother, says Bryce is now covered by Medi-Cal, California’s Medicaid program. His primary insurance had been her employer-sponsored plan until she was laid off in 2009. She searched for private coverage for Bryce, but says, “Private was so unbelievably expensive, it was unaffordable.”

Barbara says her family’s insurance is “a patchwork,” with Bryce likely to stay on Medi-Cal even after his 21st birthday. She and her other son have an individual plan they have purchased, and her husband has an employer-sponsored plan — but it covers only the employee, not the family.

For his part, Bryce Vernon says his life is a lot better since getting the kind of help that many others may be able to get from the health law, starting in 2014. He works hard to get the most out of the technology and the therapy that lets him speak. His advice to others: “Never, ever give up.”

The new rules for what health insurance companies have to cover may still change. Federal regulators plan to review them as the health law rolls out and could make changes in 2016.

This piece is part of a reporting partnership among NPRColorado Public Radio andKaiser Health News.

This article was reprinted from with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.


Health reform law leaves autism coverage decisions to the states


By Christine Vestal
Stateline Staff Writer

Autism advocates celebrated what they thought was a major victory when President Barack Obama signed the Affordable Care Act in 2010:  They expected the law to require all insurance companies to cover pricey, potentially lifelong treatments for those with the incurable condition.

But instead of creating a national standard for autism coverage, the administration bowed to political pressure from states and insurers and left it to states to define, within certain parameters, the “essential benefits” that insurance companies must provide.

Coverage requirements for autism treatments, such as behavioral counseling and speech and occupational therapy, already vary from state to state.  Far from smoothing out those differences, critics say the ACA will add a new layer of complexity.

The U.S. Department of Health and Human Services (HHS) says it will consider setting a national standard in 2016. Until then, states will decide what autism treatments insurance companies must cover.


What is autism, how is it treated and at what cost?

Autism is a mental disorder affecting more than 2 million Americans and tens of millions of people worldwide. According to the U.S. Centers for Disease Control, one in every 88 children in the U.S has the condition, and the number is rising. Paying for treatment can be financially catastrophic to families.

Symptoms of autism first appear from birth to early childhood, and include mild to severe social, communication and behavioral challenges as well as repetitive behaviors. Treatments include counseling, speech and physical therapy and medications.

Advocates say applied behavior analysis (ABA), in which a therapist reinforces positive behaviors in the patient, is essential to helping children with autism reach their full potential.

ABA, developed in the 1960s, has become the most widely used autism treatment. But it requires hours of intensive, one-on-one therapy, and costs as much as $60,000 a year.

Depending on the severity of symptoms, a trained therapist using ABA may spend as many as 40 hours a week with a child. A new study by researchers at the University of Pennsylvania and the London School of Economics estimates the cost of treating a person with autism during his or her lifetime is $2.3 million. Autism costs Americans an estimated $126 billion annually, a number that has more than tripled since 2006.

Who opposes broad coverage of autism treatments?

ABA is endorsed by the American Medical Association, the American Academy of Pediatrics, and the U.S. Surgeon General. But insurance companies often object to paying for it because they say it is unproven and is largely educational, not medical.

Consumer advocates led by the Council for Affordable Health Insurance also argue that covering ABA is so costly it causes insurance premiums to rise, making basic health coverage unaffordable for millions of Americans.

What have states done to help ensure coverage of autism therapies?

Starting with Indiana in 2001, a total of 34 states and the District of Columbia have enacted autism insurance mandates, requiring carriers within their borders to provide coverage of ABA and other autism treatments in some or all of their policies.

States require insurers to cover nearly 2,300 categories of illness, treatments, and screenings.  Every state with an autism mandate requires insurers to cover ABA for state employees.

Beyond that, state laws vary widely. Some apply only to individual health policies, while others include small group and large corporate policies.

(No state mandates apply to the self-funded policies large employers typically offer, which is the type of coverage one-quarter of insured Americans have.)

Last year, the federal government began requiring coverage of ABA for the nation’s 8 million federal employees, retirees and their dependents.  Insurance coverage for members of the military also includes ABA treatments, with some restrictions.

Will existing state insurance mandates apply to policies sold on the state insurance exchanges?


The ACA says state insurance mandates in place before Dec. 31, 2011 may apply to policies offered on the exchanges.  If a state requires commercial carriers to cover ABA, that same requirement may be applied to policies sold on its exchange.

However, when the administration directed states to define “essential benefits,” every state either chose a “benchmark plan” (defined as the small business plan in the state with the most beneficiaries) or let the federal government choose a similar plan for them.

If a state’s benchmark plan includes a requirement to cover ABA and other autism treatments, then all the plans on its exchange must do the same.

But in 11 of the 34 states with autism mandates, the benchmark plan does not include autism coverage, according to an analysis by advocates Autism Speaks.

In those states, as well as the 16 states without autism mandates, state officials have the option of adding autism coverage as a required “supplemental” plan.

In Ohio, where the legislature is currently considering an autism bill, Gov. John Kasich, a Republican, mandated autism coverage by executive order in December 2012.

Alaska’s insurance chief, Bret Kolb, wrote to state lawmakers last month confirming that Alaska’s newly-minted autism mandate would apply to policies sold on the federally-run exchange.

How do state mental health parity laws affect autism patients?

According to the National Conference of State Legislatures, every state but Wyoming now has a mental health parity law on the books, requiring that when insurers cover mental illness and/or substance abuse they do so on an equal financial basis with physical illnesses.

A federal law – the Mental Health Parity and Addiction Act of 2008 – also requires equal treatment, but the Obama administration has yet tocomplete the federal rules that would enable states to enforce it.

Parity laws only require carriers to pay as much for mental health treatments as they pay for medical treatments, with the same co-pays, deductibles and coverage limitations.

The laws do not require carriers to cover specific treatments, such as ABA treatments. Still, state parity laws, combined with mandates, will maximize coverage for any given child.

What is “habilitation” and how does it affect autism coverage?

The federal government lists 10 categories of health care services states must include in their essential benefits. Two relate to autism: mental health services and habilitation, which is defined as therapies for children with developmental disabilities.

In accepting state benchmark plans last year, HHS told states they must spell out what services are covered under habilitation.

The way states define habilitation and how that plays out after 2014, when insurance companies begin processing claims, remains to be seen.

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Stateline is a nonpartisan, nonprofit news service of the Pew Center on the States that provides daily reporting and analysis on trends in state policy.


Employing the Disabled


Disabled wheelchair handicapped iconBy Melissa Maynard
Stateline Staff Writer

MILWAUKEE—The 54 million Americans who have disabilities can add an impressive reference to their resumes: the nation’s governors.

Governors spent much of this year’s summer meeting of the National Governors Association (NGA) talking about how states can help people with disabilities find jobs.

Under the direction of outgoing chair Gov. Jack Markell of Delaware, the NGA has been studying the issue for the past year and has released a detailed blueprint  that includes dozens of policy recommendations.

“I believe if each of us focuses on implementing just one thing from this blueprint in our states, then together we can really move the needle on this very important issue,” Markell told his fellow governors.

The goal in trying to integrate the disabled into the workforce is to improve their quality of life and boost businesses’ bottom lines.

Companies such as Walgreens that actively recruit people with disabilities say hiring them improves employee retention and productivity— in addition to being the right thing to do.

The issue has significant implications for federal and state budgets. Nationally, more than 30 percent of the adult population receiving income-based government assistance through programs such as Medicaid and Temporary Assistance for Needy Families has a disability, according to a February report from the Census Bureau.

One in three disabled adults between the ages of 18 and 64 was employed in 2011, compared with three out of four adults without a disability.

“It’s the change in mind-set away from an expectation of charity to the expectation that you the state want to be my business partner in helping me solve a business problem, and that is in helping me find people with the appropriate level of skills,” Markell said of the NGA initiative.

Markell has helped connect Specialisterne, a Denmark-based firm that tries to find employment for people with autism, with Delaware employers.

Jobs in software testing, data quality assurance, programming, data mining and data entry may be especially well-suited for people with autism, many of whom have outstanding memories and an appreciation for detail.

The international IT firm CAI, which employs about 700 people in Delaware, has committed to work with Specialisterne to hire people with autism for at least 3 percent of its workforce by 2015.

Neighboring Maryland trains disabled people for specific private-sector employment, including  work in drug stores, warehouses, hotels, bakeries, landscaping firms, medical billing, food service, banking and animal care.

Michigan has developed marketing materials to answer anticipated questions and help pitch potential partnerships to employers.

The NGA recommendations urge states to modify their hiring practices and make adjustments in workplaces to give people with disabilities a fairer shot at getting and keeping state jobs.

The recommendations also focus on what states can do to promote private-sector hiring.

Among the report’s recommendations:

  • Reposition state policies and investments toward employment that integrates people with disabilities into the broader workforce. States like Washington have done this through executive orders, while South Dakota, Utah and Virginia have begun housing disability services in America’s Job Centers, which function as one-stop shops for people seeking employment.
  • Find, engage and support businesses that are looking for workers. States should designate a single liaison charged with helping businesses navigate all of the agencies that support people with disabilities, which include Medicaid, assistive technology and vocational rehabilitation. The report found that necessary accommodations are typically minor and cost an average of $500.
  • Incorporate career-readiness into K-12 education. In Arkansas, vocational rehabilitation counselors from the state work with high school students with disabilities, their families and teachers on career plans. Counselors work with the local business community to provide job training opportunities that match students’ skills and interests.

Governors of both parties have embraced the year-long project. South Dakota Gov. Dennis Daugaard, a Republican who was raised by two deaf parents, said he was initially worried that the initiative was too “fluffy and feel-good” and would not lead to meaningful change.

But Daugaard said he was converted by Markell’s pragmatic approach and passion for the subject. He has become deeply involved in the initiative and has assembled a task force of interested stakeholders to implement a comprehensive approach to the problem in South Dakota.

He said he is particularly excited about exposing disabled children and youth to the workplace and training and mentoring opportunities.

People with disabilities can lead more fulfilling lives when they find jobs that brings them a sense of purpose and inclusion, and should not be told at a young age that their job will be to receive disability checks, he said.

“We want to start early with parents who have children with disabilities to make sure they don’t cheat their children of the self-satisfaction that comes from work and achievement and self-reliance,” he said.

Disability advocates credit the initiative with giving long-neglected problems a needed boost in visibility and momentum.

Governors in a number of states have vowed to begin working with disability advocates and business leaders in their states on the complex issues involved in the coming months.

Jennifer Mizrahi, president of the nonprofit RespectAbilityUSA, said the state momentum is particularly helpful, given the lack of movement at the federal level since the 1990 passage of the Americans with Disabilities Act.

“It solved the problem of architecture—adding doors and ramps—but it did not solve the problem of attitude,” she said of ADA.

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Stateline is a nonpartisan, nonprofit news service of the Pew Center on the States that provides daily reporting and analysis on trends in state policy.


Obesity a challenge among the disabled


Disabled wheelchair handicapped iconBy Glenda Fauntleroy, HBNS Contributing Writer
Research Source: American Journal of Preventive Medicine

Obesity and its related health problems impacts far more people with a disability than previously reported, according to new research in theAmerican Journal of Preventive Medicine.

About 54 million people in the U.S. have a disability that affects mobility. The study looked at how these disabilities affect the prevalence of obesity and chronic conditions such as diabetes and high blood pressure.

Lead author Katherine Froehlich-Grobe, Ph.D., associate professor at University of Texas School of Public Health in Dallas, said the main impetus of the study was to assess the rate of obesity among people with disabilities based on actual measurements rather than people’s self-reported height and weight, which are often inaccurate.

“While we expected to see higher prevalence than earlier estimates based on self-reports, we were surprised to see how high obesity prevalence was among those with a disability,” she said.

The researchers used six sets of data from the National Health and Nutritional Examination Survey (1999–2010) to compare the rates of obesity and extreme obesity among 11,556 adults with disabilities and 20,434 adults without disabilities.

The most common disabilities affecting mobility were arthritis and back and neck problems. Chronic disease risk factors, including blood pressure, lipids and glucose levels were also compared by weight and severity and status of disability.

The study found that 41.6 percent of people with disabilities were obese and 9.3 percent were extremely obese. In contrast, 29.2 percent of those without a disability were obese and 3.9 percent extremely obese.

People with disabilities at all weight categories were significantly more likely to report having high blood pressure, high cholesterol, or diabetes and to have been prescribed medications for these conditions.

Healthcare providers should be encouraged to include individuals with disabilities in their clinical weight management efforts, suggest the researchers.

“Physical activity and exercise are critical to weight management and those with disabilities should also be as active as they can within the limits of their function and health,” said Froehlich-Grobe. “Common forms of exercise and activity [include] walking or bicycling, so the problem faced by providers is knowing what to recommend to those who face mobility issues and for whom walking is neither feasible or advisable.”

Lawrence J. Cheskin, M.D., director of Johns Hopkins Weight Loss Management Center in Baltimore, said patients with disabilities treated at his center are indeed faced with more challenges, since physical activity may be less possible as a means of preventing or treating weight gain.

“Food may also be a source of pleasure and comfort even more than in the general population,” Cheskin said. “We tend to focus on addressing intake, as this is the area most likely to result in improvements in weight.”

Health Behavior News Service is part of the Center for Advancing Health

The Health Behavior News Service disseminates news stories on the latest findings from peer-reviewed research journals. HBNS covers both new studies and systematic reviews of studies on (1) the effects of behavior on health, (2) health disparities data and (3) patient engagement research. The goal of HBNS stories is to present the facts for readers to understand and use for themselves to make informed choices about health and health care.


Medicare failing to monitor prescribers, putting seniors and disabled at risk



By Tracy WeberCharles Ornstein and Jennifer LaFleur

ProPublica, May 11, 2013, 9:06 p.m.

This story was co-published with The Washington Post.

Ten years ago, a sharply divided Congress decided to pour billions of dollars into subsidizing the purchase of drugs by elderly and disabled Americans.

The initiative, the biggest expansion of Medicare since its creation in 1965, proved wildly popular. It now serves more than 35 million people, delivering critical medicines to patients who might otherwise be unable to afford them. Its price tag is far lower than expected.

But an investigation by ProPublica has found the program, in its drive to get drugs into patients’ hands, has failed to properly monitor safety.

Prescription data obtained by ProPublica shows widespread use of antipsychotics, narcotics and other drugs dangerous for older adults, but Medicare officials say it’s not their job to look for unsafe prescribing or weed out doctors with troubled backgrounds.

An analysis of four years of Medicare prescription records shows that some doctors and other health professionals across the country prescribe large quantities of drugs that are potentially harmful, disorienting or addictive. Federal officials have done little to detect or deter these hazardous prescribing patterns.

Searches through hundreds of millions of records turned up physicians such as the Miami psychiatrist who has given hundreds of elderly dementia patients the same antipsychotic, despite the government’s most serious “black box” warning that it increases the risk of death. He believes he has no other options.

ProPublica LogoSome doctors are using drugs in unapproved ways that may be unsafe or ineffective, records showed. An Oklahoma psychiatrist regularly prescribes the Alzheimer’s drug Namenda for autism patients as young as 12; he says he thinks it calms them. Autism experts said there is scant scientific support for this practice.

The data analysis showed widespread prescribing of drugs such as carisoprodol, which was pulled from the European market in 2007. In 2010 alone, health-care professionals wrote more than 500,000 prescriptions for the drug to patients 65 and older. The muscle relaxant, also known as Soma, is on the American Geriatrics Society’s list of drugs seniors should avoid.

The data, obtained under the Freedom of Information Act, makes public for the first time the prescribing practices and identities of doctors and other health-care providers. The information does not include patient names or the reasons why doctors prescribed particular drugs, so reporters interviewed the physicians to learn their rationales.

Medicare has access to reams of data about its patients, their diagnoses and the medical services they received. It could analyze all of this information to determine whether patients are being prescribed appropriate drugs for their conditions.

But officials at the Centers for Medicare and Medicaid Services say the job of monitoring prescribing falls to the private health plans that administer the program, not the government. Congress never intended for CMS to second-guess doctors – and didn’t give it that authority, officials said.

“CMS’s payments don’t go to physicians, don’t go to pharmacies. They go to plans, which is how our oversight framework has been established,” Jonathan Blum, the agency’s director of Medicare, said in an interview. The philosophy “really has been to defer to physicians” about whether a drug is medically necessary, he said.

Asked repeatedly to cite which provision in the law limits their oversight of prescribers, CMS officials could not do so.

The Office of the Inspector General of the Department of Health and Human Services has repeatedly criticized CMS for its failure to police the program, known as Part D. In report after report, the inspector general has advised CMS officials to be more vigilant. Yet the agency has rejected several key recommendations as unnecessary or overreaching.

Other experts in prescription drug monitoring also said Medicare should use its data to identify troubling prescribing patterns and take steps to investigate or restrict unsafe practitioners. That’s what state Medicaid programs for the poor routinely do.

“For Medicare to just turn a blind eye and refuse to look at data in front of them . . . it’s just beyond comprehension,” said John Eadie, director of the Prescription Drug Monitoring Program Center of Excellence at Brandeis University.

“They’re putting their patients at risk.”

Although Medicare hands responsibility to private insurers, experts say they are ill-equipped for the task. Insurers have access solely to the prescriptions for their members – not to a provider’s prescriptions across multiple health plans.

Only Medicare can see that.


“A red flag can turn out to be nothing, or it can turn out to be something really, really horrible,” said Kathryn Locatell, a California physician who specializes in geriatrics and elder abuse. “You won’t know unless you flag it.”

In lawsuits and disciplinary records, state and federal authorities cite a number of reasons that doctors prescribe improperly. Some run mills where patients get prescriptions if they pay cash for a visit. Others have relationships with drug companies that influence what they prescribe. Regulators say some doctors choose inappropriate medications under pressure from families or facilities.

Research also shows that doctors often don’t keep up with the latest studies and drug warnings.

ProPublica’s examination of Part D data from 2007 through 2010 showed that, in many cases, Medicare failed to act against providers who have been suspended or disciplined by other regulatory authorities.

Doctors barred by state Medicaid programs for questionable prescribing remain able to dole out the same drugs under Medicare. So can dozens of practitioners who have been criminally charged or convicted for problem prescribing, or who have been disciplined by state medical boards.

The Part D records detail 1.1 billion claims in 2010 alone, including prescriptions and refills dispensed. ProPublica has created an online tool, Prescriber Checkup, to allow anyone to search for individual providers and see which drugs they prescribe.

About 70 providers each churned out more than 50,000 prescriptions and refills in 2010, the data show, averaging at least 137 a day.

A few had high tallies because they work in institutional settings, such as nursing homes, or operate busy clinics. In other cases, doctors said they think the prescriptions of their colleagues were attributed to them. They acknowledged in interviews that their numbers should have sparked questions.

Some families say they, too, think Medicare should be paying closer attention.

When 79-year-old Mable “Nanny” Webb’s family put her in a nursing home near Fort Worth in 2004 to rehabilitate her back, she came under the care of Adolphus Ray Lewis, who would later become one of Medicare’s busiest prescribers.

Records show that the Texas medical board temporarily restricted Lewis’s license in 1998 for improper prescribing of painkillers and that he was sued repeatedly for malpractice. But Webb’s family didn’t know that.

While under Lewis’s supervision, Webb developed a urinary tract infection that went untreated and was given a painkiller in doses that were excessive and dangerous for her condition, court testimony shows. Within a month, she died.

Webb’s relatives sued. During the 2008 trial, Lewis admitted responsibility for her death, testifying that he had not reduced the dosage ordered by a nurse he supervised.

A jury ordered Lewis to pay $1.6 million in damages to Webb’s relatives. They later settled for a lesser amount – one of at least eight malpractice settlements in cases involving Lewis since the mid-1990s, according to court records and interviews.

Yet Lewis continued to prescribe, racking up nearly 99,000 Medicare prescription claims including refills in 2010, fifth-most in the country. He wrote 46,000 more under Medicaid that same year. He declined to comment for this article.

Webb’s granddaughter, Michelle Wheeler, said that though it’s too late for her family, information about a doctor’s drug choices could help others decide who should care for their loved ones.

“Everybody should be able to know that,” she said.

Antipsychotics for Seniors

In his worn Miami office, psychiatrist Enrique Casuso said he has no choice but to give antipsychotics to many of his elderly patients.

Often, they are beset with dementia and have been abandoned by their families in understaffed assisted-living facilities. They may dress for work and wait in the street for a bus, he said, when they haven’t had a job in a decade.

Drugs keep them safe and ease their anxiety, Casuso said: “You have to submerge them in medication to avoid a catastrophic event.”

But Casuso, 74, prescribes powerful antipsychotics at a rate that other providers and experts call alarming. In 2010, he prescribed more of these medicines to seniors in Medicare than any other physician in the country – 50 percent more than the second-ranking doctor.

Three-quarters of the prescriptions were for a single brand, Seroquel, which Casuso said is “less evil” and has less-severe side effects than other antipsychotics.

Although antipsychotics are an important treatment for patients with serious mental illness, such as schizophrenia, the Food and Drug Administration warns against their use in dementia patients, citing increased risk of death. Regulators are trying to discourage their use in nursing homes.

Casuso also leads the nation in giving seniors powerful sedatives, such as zolpidem, the generic form of Ambien, despite warnings from geriatric experts that the drugs do little to help the elderly sleep and that the medications increase the risk of confusion, falls and bone fractures. Casuso said the pills allow his agitated patients to sleep.

Casuso’s prescribing patterns have not triggered any intervention from Medicare.

In his office, Casuso sits surrounded by mementos of his native Cuba, where he served 16 years in prison for his role in the Bay of Pigs invasion. “I know what it is to be locked in one place,” he said.

He flipped through a stack of letters from Part D insurers about his patients. Some have alerted him to the government warnings about risks on a drug’s label.

“They say this medication has a black-box warning on the elderly,” said Casuso, raising his hands in a gesture of surrender. “I know! I don’t like that. What am I going to use?”

Still, none of the letters forbids him from using the drugs. Casuso has continued prescribing the same drugs, and Part D has continued to pay for them.

Medicare records show a long list of doctors who routinely prescribe antipsychotics to older patients.

Medicare records show a long list of doctors who routinely prescribe antipsychotics to older patients. In 2010, nearly 340 physicians and other providers accounted for more than 1,000 antipsychotic prescriptions each for patients 65 and older.

CMS’s Blum said his agency deserves credit for trying to reduce antipsychotic use in nursing homes. But when asked whether the agency was likewise focusing on the doctors who prescribe risky drugs, he said, “Not at this time.”

The agency declined to comment on Casuso or any of the other physicians named in this article.

Florida’s Medicaid program has not been nearly as accepting of Casuso’s practices as Medicare, public records show.

In 2005, the state kicked him out of its Medicaid network using a provision that allows it to end a contract without cause on 30 days’ notice. An internal memo justifying his removal said Casuso was seeing up to 81 Medicaid patients a day in addition to non-Medicaid cases.

Investigators found cases in which he lacked “awareness or oversight of the medication prescribed,” according to the memo, obtained under a public records request.

Casuso said he believes Medicaid terminated him because he prescribed a lot of expensive drugs, not because he endangered patients. He suggested that his prescribing numbers are high because some insurers require two prescriptions if patients need a different-strength pill in the morning than at night.

Locatell, the geriatrics expert, said Medicare should be doing more to protect patients whose conditions render them unable to question their own care.

“They can’t watch out for themselves, that’s for sure,” she said.

‘Like Tying Both Hands’

Congress created Medicare’s drug program in 2003 after a contentious, middle-of-the-night vote marked by aggressive arm-twisting and called-in favors.

Republicans, led by President George W. Bush, pushed through more spending to lower seniors’ drug costs. Most Democrats called the plan a blank check for drugmakers because it prohibited Medicare from negotiating with the companies for lower prices.

Typically in Medicare, the government is responsible for contracting with doctors, reviewing claims for treatment and paying the bills.

But Part D is different: Patients get their drugs through stand-alone drug plans, which cover only drugs, or through Medicare HMOs that also cover medical services.

Medicare pays private insurers a set amount per enrollee to run the program and pay for the drugs. All the insurance plans are supposed to alert pharmacies to potentially harmful drug interactions, query doctors who prescribe high levels of narcotics to individual patients and be on the lookout for fraud, among other things.

Medicare also expects the insurers to prevent inappropriate prescribing for individual patients. But it doesn’t give them enough information or the tools to do that.

Insurers say they must pay for prescriptions from all providers – even those they believe are acting improperly.

With rare exceptions, Medicare does not allow insurers to reject drug claims. It also does not give the stand-alone plans access to their members’ medical claims, making it nearly impossible for them to discern if patients have been given the wrong drug for their conditions.

Insurers say they must pay for prescriptions from all providers – even those they believe are acting improperly – unless they have been formally excluded from the program. They are asked to refer questionable cases to Medicare’s fraud contractor.

“It’s like tying both hands behind someone’s back,” said Jerry Avorn, a Harvard medical professor and author of a book on the risks and benefits of prescription drugs.

From the start, Avorn and other experts were concerned that Congress was making a mistake by segregating patients’ drug coverage from the rest of their care. But Congress, under heavy lobbying by the drug industry, opted for a payment pipeline for drugs, not another layer of bureaucracy.

The priority for CMS was to get seniors their drugs.

“They just did not want to be accused of letting the Part D plans interfere with a physician’s medical judgment,” said Thomas Barker, who was CMS’s top lawyer when the program’s rules were crafted.

Told of ProPublica’s findings, Barker said it might be time to revisit how the program is run.

“We did what we thought would be in the best interest of beneficiaries,” he said. “We had no idea what was going to happen.”

Alarms Sounded

Some of Medicare’s most controversial providers have been in the headlines, but it hasn’t hindered their ability to prescribe drugs in Part D.

Chicago psychiatrist Michael Reinstein, who works at a string of nursing homes for the mentally ill, was the subject of articles published jointly by ProPublica and the Chicago Tribune in 2009 for giving more of the potent schizophrenia drug clozapine to Medicaid patients than all of the physicians in Texas.

Clozapine is the only drug approved for treatment-resistant schizophrenia, but it carries a risk of serious side effects, including seizures, diabetes and the potential for a dangerous decrease in the number of white blood cells.

Reinstein, 69, has been sued more than a dozen times since 2005 for malpractice involving patients who died. Neither he nor his attorney responded to multiple requests for comment.

Records show that Reinstein’s most-prescribed drugs in Medicare were the same as those in Medicaid.

From 2007 to 2009, he wrote an average of 20,000 Medicare prescriptions annually for clozapine and a brand-name version, FazaClo, with most going to disabled patients younger than 65. Although he wrote fewer prescriptions in 2010 – 14,000 – the number was still more than double the next-highest prescriber of these drugs.

Reinstein was the Part D program’s top prescriber of antipsychotics to seniors and the disabled over the four-year period analyzed by ProPublica.

Last November, the Justice Department filed suit against Reinstein, alleging that he prescribed certain medicines in exchange for speaking or consulting payments from their makers, Novartis, Teva Pharmaceuticals and Ivax Pharmaceuticals, which Teva acquired in 2006. The suit also accused him of submitting false claims to Medicare and Medicaid.

The next day, the state medical board filed a complaint against Reinstein, and Illinois Medicaid suspended payments to him. But he remains able to prescribe in Medicare.

That same month, Reinstein defended his prescribing to the Chicago Tribune, saying his use of clozapine was “the best choice” for his severely mentally ill patients. “I am confident that I will be vindicated,” he said.

Chicago psychiatrist Mark Amdur, who complained about Reinstein to Illinois officials in 2003, said Medicare and Medicaid officials share in the blame for leaving Reinstein’s patients at risk.

“They know what people are prescribing, or they should know,” he said.

Miami psychiatrist Fernando Mendez-Villamil‘s prescribing habits came to light in a2009 letter from Sen. Charles E. Grassley (R-Iowa) to HHS Secretary Kathleen Sebelius.

In Florida Medicaid alone, Mendez-Villamil had written more than 96,000 prescriptions for mental-health drugs from July 2007 to March 2009, more than anyone else in the program, Grassley noted. He asked Sebelius what her department had done about him, and what it does to track the prescribing of others.

Months later, in April 2010, Florida Medicaid expelled Mendez-Villamil without publicly revealing its reasons. An internal memo cited concerns about “the volume of patients being seen, and the medications being prescribed.”

Earlier this year, the Florida medical board accused him of giving patients as young as 3 a variety of mental health drugs without properly diagnosing or monitoring them.

Yet throughout, Mendez-Villamil has remained in good standing with Medicare. Working primarily out of his walk-in clinic, he wrote 6,100 prescriptions for antipsychotics in 2009 and 5,500 more in 2010, records show.

Mendez-Villamil could not be reached for comment, but his attorney, Mike Gennett, denied that his client mistreated patients. “We categorically deny any wrongdoing by Dr. Mendez-Villamil in regards to his care of patients or prescribing of medications,” he wrote in an email. Mendez-Villamil has requested a formal hearing on the medical board complaint.

Sebelius responded to Grassley’s inquiry in March 2010, assuring the senator that Mendez-Villamil was under investigation by Medicare’s fraud contractor.

More than three years later, there has been no public action.

CMS did not respond to questions about Mendez-Villamil, saying it could not discuss ongoing administrative or criminal investigations.

In an interview for this article, Grassley said it is “kind of ridiculous” for Medicare and Medicaid to take such different actions.

“What I expect here is a little common sense on the part of CMS,” he said.

Rx for Narcotics

Medicare does little to stop some doctors with criminal or disciplinary histories from continuing to prescribe to patients.

Perhaps the most striking example: its inaction on prolific prescribers of OxyContin and oxycodone, two often-abused narcotics with a high street value.

Half of Medicare’s top 20 prescribers of OxyContin in 2010 have been criminally charged, convicted or settled fraud claims, or have been disciplined by their state medical boards, records show.

Similarly, eight of the top 20 prescribers of 30-milligram oxycodone pills – the strongest dose – have been charged, convicted or barred from prescribing controlled substances, or face discipline by licensing boards.

Yet as of today, only one of those doctors has been barred from Medicare – and that wasn’t until nearly a year after his conviction for drug trafficking and health-care fraud.

Medicare shares responsibility with the HHS inspector general for allowing the doctors to remain in the program. Medicare has not sought authority from Congress to suspend providers from Part D – as experts say it should. The inspector general, which is responsible for excluding providers, hasn’t done so in these cases.

Criminal charges alone are not enough to bar a practitioner, said Don White, a spokesman for the inspector general. The office must exclude providers convicted of certain offenses, including fraud, and has discretion to do so if they have lost licenses. But White said his office relies on other agencies to flag these cases.

“The legal process is sure but not fast,” he said.

Blum said CMS is now taking steps to search for doctors and patients who may be engaged in fraud involving painkillers. The agency has encouraged insurance plans to send warning letters to doctors if signs indicate a patient may be going to different doctors to feed a drug habit.

Former CMS administrator Mark McClellan said Medicare should at least be able to stop paying for prescriptions written by doctors facing fraud charges.

“That’s the kind of thing that seems like you ought to be able to find a way to deal with,” he said.

In some cases, after years of inaction by Medicare and others, high prescribers were accused of harming patients.

Gerson Sternstein, 61, a Connecticut psychiatrist, consistently ranked among Medicare’s most prolific OxyContin prescribers from 2007 to 2010. (OxyContin was reformulated in late 2010 to make it less prone to abuse.)

Since 2009, at least five malpractice lawsuits have been filed in Connecticut accusing him of questionable prescribing. A state medical board investigation found that his count of painkillers and other controlled substances – for the 12 months beginning July 2008 – exceeded that of Yale-New Haven Hospital.

In revoking Sternstein’s license in 2011, the board cited 10 cases in which he had given out painkillers inappropriately, including two in which patients died – one from opiate toxicity, the other from a heart condition that can be associated with drug overdose.

In an e-mail, Sternstein said he was a specialist in treating patients whose pain could not be managed by anyone else. “I considered it my responsibility to try and help these individuals in their suffering,” he said, noting that he faced no criminal action.

In defending himself to the medical board, documents show, one of the doctor’s arguments was that Medicare allowed him to prescribe as he chose.

“Dr. Sternstein believes Medicare [Part] D allows wide latitude in off label use of medications,” the board report states.

Potential for Fraud

Since Part D was launched, the HHS inspector general and the Government Accountability Office have grown increasingly worried that it lacks adequate oversight.

Several reports have found that Part D is vulnerable to fraud. Insurers have paid for prescriptions from doctors who were barred by Medicare. Separately, in 2007 alone, the program covered $1.2 billion worth of drugs prescribed by providers whose identities were unknown to insurers or Medicare, according to a June 2010 report.

The inspector general even found fault with the contractors Medicare hired to dig out fraud: The contractors generated few of their own investigations, relying on outside complaints for direction.

Although many reports focus on fraud, analysts also have found that the program was vulnerable to inappropriate prescribing that put patients’ lives in danger.

A May 2011 report said Medicare has not ensured that Part D paid only for drugs prescribed for FDA-approved and widely accepted off-label indications as federal law requires. About half of the 1.4 million antipsychotic prescriptions made to nursing home patients in the first six months of 2007 “were not used for medically accepted indications,” the report said.

“There’s certainly room for improvement,” Robert Vito, a regional inspector general who has directed many of the reports, said in an interview.

Medicare should, for example, require that prescriptions include a patient’s diagnosis as a way to monitor how Part D drugs were being used, his agency said.

But Medicare officials told the inspector general that neither state boards of pharmacy nor private industry requires this practice, so neither would they.

CMS also has rejected proposals to require insurers to report suspicious prescribing to its fraud contractor. Such sharing is now voluntary.

Medicare’s safeguards lag well behind those of many state Medicaid programs.

Louisiana requires that doctors include diagnosis codes when they write prescriptions for painkillers and antipsychotics. Similar checks have proved effective in other states. Florida found that antipsychotics given to children younger than 6 dropped when specialists reviewed prescriptions.

Even some of Medicare’s top prescribers think the program should do more to research unusual or suspicious prescribing patterns.

Indiana physician Daniel J. Hurley led the country with more than 160,000 prescriptions under Part D in 2010, ProPublica’s analysis shows. In an interview, he said nursing home pharmacies had credited him with prescriptions by other health professionals in his practice, a quirk Medicare should want to address.

It’s unclear how often this might happen, and some nursing home doctors do write lots of prescriptions on their own. Medicare said it recently addressed this issue, but according to Medicare’s own numbers, Hurley’s prescriptions have dropped only slightly.

“Why wouldn’t they call us up and ask us?” Hurley said. “If you hustled, you couldn’t come anywhere near that number, nor should you.”

Off-label Treatment

Several times a week, psychiatrist Robert O. Morton loads his car with plastic bins of medical records and drives to facilities across Oklahoma to care for older children and adults with autism and developmental disabilities.

At many of the stops, Morton does something unorthodox: He prescribes patientsNamenda, a drug normally given to elderly Alzheimer’s patients.

“In autism, you’ll know that when they get overstimulated, they start rocking and they start flapping,” he said. “What we’ve seen Namenda do is just tone that down.”

Morton stands out in Medicare’s data because two-thirds of his prescriptions for Alzheimer’s drugs were written for patients younger than 65 – a greater proportion than any other physician in the country.

Morton’s prescribing of Namenda does not appear to meet Medicare payment rules, which say drugs can be covered for off-label uses only if they are supported by science and included in one of three recognized drug reference guides.

Medicare also hasn’t imposed a requirement similar to Oklahoma Medicaid, which requires that Morton and other doctors get permission to give Namenda to patients 50 and younger who do not have Alzheimer’s.

Several experts in autism and developmental disabilities said there is little support for the efficacy of Namenda as a treatment for autism. No studies have been done on the effects of long-term use of Namenda in children, they said.

Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, said he has never prescribed the drug and would be “dubious about the rationale.”

Alexander Capron, a law professor and medical ethicist at the University of Southern California, said testing new treatments is part of scientific innovation. “But when one moves beyond a single patient or maybe a couple of patients,” he said, ” . . . you’re basically saying, ‘I’m doing a study.’ ”

In a clinical study, patients or their families would be informed about side effects and risks.

Morton, 66, said that Namenda calms the behavioral symptoms of developmental disabilities by lessening the effects of a neurotransmitter in the brain called glutamate. Asked if he has written up his findings in a research paper, he said he hasn’t had time.

Psychiatry has offered Morton a second chance in medicine. His license was revoked twice in the 1990s when he battled an opiate addiction as an internist. “I lost my wife, lost my practice, lost my job, so I had to think about what I really wanted to do,” he said.

He now is the medical director at an Ada, Okla., psychiatric hospital and sees patients in a variety of other settings.

At Oakridge Home in Wewoka, Okla., one of the facilities Morton visits, nursing director Lisa Brown said Namenda has “worked wonders for mood behaviors” in developmentally disabled patients.

But even Morton conceded that his practice should have drawn Medicare’s scrutiny.

“If they see a pattern that’s unusual,” he said, “they should go look at it.”

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