Category Archives: Disabilities

Wellness programs at work are popular – but do they work?

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yoga-office-570By Julie Rovner
KHN

If you get health insurance at work, chances are you have some sort of wellness plan, too.

But so far there’s no real evidence as to whether these plans work.

One thing we do know is that wellness is particularly popular with employers right now, as they seek ways to slow the rise of health spending. These initiatives can range from urging workers to use the stairs all the way to requiring comprehensive health screenings.

The 2014 survey of employers by the Kaiser Family Foundation found that 98 percent of large employers and 73 percent of smaller employers offer at least one wellness program. (Kaiser Health News is an editorially independent program of KFF.)

What makes wellness plans so popular?

It really is part of their strategy to help employees be healthy, productive, and engaged,” says Maria Ghazal, vice president and counsel at the Business Roundtable, whose members are CEOs of large firms. “And it’s really part of their strategy to be successful companies.”

And there’s another reason wellness has gotten so pervasive, said health consultant Al Lewis. It’s a big industry. Continue reading

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US takes aim at company ‘wellness’ programs

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ScaleBy Michelle Andrews
KHN

Do it or else. Increasingly, that’s the approach taken by employers who are offering financial incentives for workers to take part in wellness programs that incorporate screenings that measure blood pressure, cholesterol and body mass index, among other things.

The controversial programs are under fire from the Equal Employment Opportunity Commission, which filed suit against Honeywell International in October charging, among other things, that the company’s wellness program isn’t voluntary.

In the wellness program, employees and their spouses are asked to get blood drawn to test their cholesterol, glucose and nicotine use, as well as have their body mass index and blood pressure measured.

It’s the third lawsuit filed by the EEOC in 2014 that takes aim at wellness programs and it highlights a lack of clarity in the standards these programs must meet in order to comply with both the 2010 health law and the landmark Americans with Disabilities Act.

Honeywell, based in Morristown, N.J., recently got a reprieve when a federal district court judge declined to issue a temporary restraining order preventing the company from proceeding with its wellness program incentives next year.

But the issue is far from resolved, and the EEOC is continuing its investigations. Meanwhile, business leaders are criticizing the EEOC action, including a recent letter from the Business Roundtable to administration officials expressing “strong disappointment” in the agency’s actions.

In the Honeywell wellness program, employees and their spouses are asked to get blood drawn to test their cholesterol, glucose and nicotine use, as well as have their body mass index and blood pressure measured.

If an employee refuses, he’s subject to a $500 surcharge on health insurance and could lose up to $1,500 in Honeywell contributions to his health savings account.

He and his spouse are also each subject to a $1,000 tobacco surcharge. That means the worker and his spouse could face a combined $4,000 in potential financial penalties. Continue reading

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Nearly half of Americans over 65 need help with daily tasks

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Clinic elderly doctor nurse office couchBy Millie Dawson
Health Behavior News Service

Nearly half of Americans age 65 and older, totaling about 18 million people, require help with routine daily activities like bathing, handling medications or meals.

A new study in Milbank Quarterly reveals a growing need for improved services and support for older Americans, their spouses, their children and other “informal caregivers.”

While 51 percent of older Americans in the study reported no difficulty with routine tasks, “29 percent reported receiving help with taking care of themselves or getting around in the previous month,” said co-author Vicki A. Freedman, Ph.D., a research professor with the Institute for Social Research at the University of Michigan.

“Another 20 percent reported that they had difficulty carrying out these activities on their own,” she said.

KEY POINTS

  • Nearly half of Americans age 65 and older require help with routine daily activities such as bathing, meals or taking medications.
  • Substantial numbers of older adults living outside of nursing homes experience adverse consequences from unmet care needs.
  • There is a growing need for improved community-based services and support for older Americans and their caregivers.

Continue reading

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Does selling your home affect eligibility for assisted living?

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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

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Inactivity linked to chronic disease in adults with disabilities – CDC

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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

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

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

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

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

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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

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Health law adds coverage needed by people with developmental disabilities

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PrintBy Michelle Andrews
KHN

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

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Women’s Health – Week 14: Dementia

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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.

Note
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: www.nia.nih.gov
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‘Habilitation’ is among new Obamacare benefits

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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.

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Think all caregivers are unhappy? They’re really not

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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 kaiserhealthnews.org 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.

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Sequester hits special education like ‘Ton of Bricks’

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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.

US

$578,892,762

AL

8,915,770

AK

1,919,022

AZ 

10,040,553

AR

5,633,069

CA

62,855,318

CO

8,108,108

CT

6,314,489

DE

1,839,638

FL

31,092,117

GA

17,458,448 

HI

2,035,593

ID

2,865,332

IL

24,657,563

IN

12,376,969

IA

5,770,827

KS

5,251,785

KY

7,688,909

LA

9,752,289

ME

2,586,535

MD

9,719,363

MA

13,418,282

MI

20,279,289

MN

9,199,308

MS

6,123,987

MO

10,762,593

MT

1,919,022

NE

3,529,607

NV

3,775,945

NH

2,247,666

NJ

17,085,902

NM

4,354,823

NY

36,378,359

NC

16,776,161

ND

1,493,764

OH

22,008,413

OK

7,300,677

OR

6,372,225

PA

21,381,079

RI

2,067,098

SC

8,583,510

SD

1,779,462

TN

11,706,600

TX

51,026,919

UT

5,672,990

VT

1,440,274

VA

13,878,260

WA

11,251,352

WV

3,589,871

WI

10,097,151

WY

  1,510,990

DC

924,976

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

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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 kaiserhealthnews.org 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.

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Obamacare presents complex choices for People with disabilities

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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 kaiserhealthnews.org 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.

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Health reform law leaves autism coverage decisions to the states

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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.

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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?

Maybe.

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.

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