Top 5 Emotional Difficulties of People with Learning Disabilities

SHAME
People growing up with a learning disability often feel a sense of shame. For some, it is a great relief to receive the diagnosis while for others the label only serves to further stigmatize them. For many adults, especially older adults, an accurate diagnosis was unavailable. These individuals were frequently labeled as mentally retarded, written off as being unable to learn, and most passed through the school system without acquiring basic academic skills.

Sadly, these feelings of shame often cause the individual to hide their difficulties. Rather than risk being labeled as stupid or accused of being lazy, some adults deny their learning disability as a defense mechanism. Internalized negative labels of stupidity and incompetence usually result  in a poor self concept and lack of confidence (Gerber, Ginsberg & Reiff, 1992)

Some adults feel ashamed of the type of difficulties they are struggling to cope with such as basic literacy skills, slow processing, attention difficulties, chronic forgetfulness, organizational difficulties, etc.

The following myths about learning disabilities have perpetuated the general public’s negative perception about learning disabilities:

    • Myth #1: People with learning disabilities have below average intelligence and cannot learn.
    • Fact: People with learning disabilities have average to above average intelligence (Gerber, 1998). In fact, studies indicate that as many as 33% of students with LD are gifted (Baum, 1985; Brody & Mills, 1997; Jones, 1986). With proper recognition, intervention and lots of hard work, children and adults with learning disabilities can learn and succeed!
    • Myth #2: Learning disabilities are just an excuse for irresponsible, unmotivated or lazy people.
    • Fact: Learning disabilities are caused by neurological impairments not character flaws. In fact, the National Information Centre for Adults and Youth with Disabilities makes a point of saying that people with learning disabilities are not lazy or unmotivated (NICHCY , 2002).
    • Myth #3: Learning disabilities only affect children. Adults grow out of learning disabilities.
    • Fact: It is now known that LD continues throughout the individual’s lifespan and may even intensify in adulthood as tasks and environmental demands change (Michaels, 1994a). Sadly, many adults, especially older adults, have never been diagnosed with a learning disability. In fact, the majority of people with learning disabilities are not diagnosed until they reach adulthood (LDA, 1996)
    • Myth #4: Dyslexia and learning disability are the same thing.
    • Fact: Dyslexia is a type of learning disability. It is not a another term for learning disability. It is a specific language based disorder affecting a persons ability to read, write and verbally express themselves. Unfortunately, careless use of the  term has expanded it so that it has become, for some, an equivalent for “learning disability”.
    • Myth #5: Learning disabilities are only academic in nature. They do not affect other areas of a person’s life.
    • Fact: Some people with learning disabilities have isolated difficulties in reading, writing or mathematics. However, most people with learning disabilities have more than one area of difficulty. Dr. Larry Silver asserts that “learning disabilities are life disabilities”. He writes, The same disabilities that interfere with reading, writing, and arithmetic also will interfere with sports and other activities, family life, and getting along with friends.” (Silver, 1998)

Typically, students with LD have other major difficulties in one or more of the following areas:

    • motor coordination
    • time management
    • attention
    • organizational skills
    • processing speed
    • social skills needed to make friends and maintaining relationships
    • emotional maturation
    • verbal expression
    • memory

Many adults with learning disabilities have difficulty in performing basic everyday living tasks such as shopping, budgeting, filling out a job application form or reading a recipe. They may also have difficulty with making friends and maintaining relationships. Vocational and job demands create additional challenges for young people with learning disabilities.

  • Myth #6: Adults with learning disabilities cannot succeed in higher education.
  • Fact: More and more adults with learning disabilities are going to college or university and succeeding (Gerber & Reiff, 1994). With the proper accommodations and support, adults with learning disabilities can be successful at higher education.

FEAR
Another emotional difficulty for adults with learning disabilities is fear. This emotion is often masked by anger or anxiety. Tapping into the fear behind the anger and/or the anxiety response is often the key for adults to cope with the emotional fallout of learning disabilities.

Feelings of fear may be related one or more of the following issues:

  • fear of being found out
  • fear of failure
  • fear of judgment or criticism
  • fear of rejection

Fear of Being Found Out
Many adults with learning disabilities live with fear of being found out. They develop coping strategies to hide their disability. For example, an adult who can hardly read might pretend to read a newspaper. Other adults may develop gregarious personalities to hide their difficulties or focus on other abilities that do not present learning barriers. Unfortunately some adults will have developed negative strategies such as quitting their job rather than risking the humiliation of being terminated because their learning disability makes it difficult for them to keep up with work demands.

The fear of being found out is particularly troublesome for many older adults who have never been diagnosed with a learning disability or those who received inappropriate support. Such adults were frequently misdiagnosed with mental retardation, inappropriately placed in programs for the mentally disabled, and/or stigmatized by teachers and classmates. In later life, these adults often return to learning through adult literacy programs in order make up for lost educational opportunities. Seeking help is a difficult step forward for these adults because it requires them to stop hiding their disability. The simple act of entering a classroom can be an anxiety producing experience for adults who have been wrongly labeled and/or mistreated by the educational system. For these adults, returning to a learning environment is truly an act of courage!

Low literacy skills and academic difficulties are not the only type of learning disabilities adults try to hide. Adults with social skill difficulties may live in constant fear of revealing social inadequacies. For example, an adult who has trouble understanding humour, may pretend to laugh at a joke even through they don’t understand it. They may also hide their social difficulties by appearing to be shy and withdrawn. On the other hand, hyperactive adults may cover up their attention difficulties by using a gregarious personality to entertain people.

Fear of Failure
The National Adult Literacy Survey, 1992, found that 58% of adult with self-reported learning disabilities lacked the basic functional reading and writing skills needed to experience job and academic success (Kirsch, 1993). Most of these adults have not graduated high school due to the failure of the school system to recognize and/or accommodate their learning disability. Needless to say, adult literacy programs are a second chance to learn the basic academic skills missed out in public school. As mentioned above, going back into an educational environment is often a fearful experience for adults with learning disabilities. One of the main reasons for this is the fear of failure. Many adults reason that, if they have failed before, what is to stop them failing again and, if they do fail again, then this failure must mean they, themselves, are failures. The tendency for adults with learning disabilities to personalize failure (i.e. failure makes ME a failure) is perhaps the biggest self-esteem buster for adult learners. Educators need to be aware of these fears to help learner’s understand that failure does not make them a failure and making mistakes is a part of the learning process.

For most people, anxiety about failing is what motivates them to succeed, but for people with learning disabilities this anxiety can be paralyzing. Fear of failure may prevent adults with learning disabilities from taking on new learning opportunities. It might prevent them from participating in social activities, taking on a new job opportunity or enrolling in an adult education course.

One positive characteristic that often helps adults overcome their fear of failure is their ability to come up with innovative strategies to learn and solve problems. These strategies are often attributed to  the “learned creativity” that many adults with learning disabilities develop in order to cope with the vocational, social  and educational demands in their everyday lives. (Gerber, Ginsberg & Reiff, 1992).

Fear of Ridicule
Adults with learning disabilities frequently fear the ridicule of others. Sadly, these fears often develop after the individual has been routinely ridiculed by teachers, classmates or even family members. The most crushing of these criticisms usually relates to a perceived lack of intelligence or unfair judgments about the person’s degree of motivation or ability to succeed. For example, comments such as you’ll never amount to anything, you could do it if you only tried harder, or the taunting of classmates about being in the mental retard class have enormous emotional effects on individuals with learning disabilities. For many of these adults, especially those with unidentified learning disabilities, these and other negative criticisms, continue to affect their emotional well-being into their adult years. It is not uncommon for adults to internalize the negative criticisms and view themselves as dumb, stupid, lazy, and/or incompetent. Such negative criticisms often fuel the fear adults with learning disabilities have about being found out.

Fear of Rejection
Adults with learning disabilities frequently fear rejection if they are not seen to be as capable as others. If they come from a middle to upper class family where academic achievement is a basic expectation for its members, fear of rejection may be a very real concern. They may also fear that their social skill deficits will preclude them from building meaningful relationships with others and may lead to social rejection. Prior experiences of rejection will likely intensify this sense of fear.

ENVIRONMENTAL AND EMOTIONAL SENSITIVITY
Environmental Sensitivities
Adults are often overwhelmed by too much environmental stimuli (e.g. background noise, more than one person talking at a time, side conversations, reading and listening at the same time). Many people with LD and ADD have specific sensitivities to their environment such as certain fabrics they cannot wear, foods they cannot tolerate, etc.

Emotional Sensitivity
Many adults with learning disabilities see themselves as more emotionally sensitive than other people. In its most extreme form, high levels of emotional sensitivity are both a blessing and a weakness. The positive features of this trait helps adults with learning disabilities build meaningful relationships with others. For example, they are often very intuitive and in-tune with both their own and other people’s emotions. Sometimes they are actually able to perceive other’s thoughts and feelings. However, this strength also serves as weakness due to its propensity to overwhelm the individuals. Emotional difficulties occur when they are unable to cope with the onslaught of emotions they are feeling. Highly sensitive adults with LD may be moved to tears more easily or feel their own and other people’s pain more deeply. For example, Thomas West, writer of “The Minds Eye”, not only gives a thorough explanation of Winston Churchill’s learning disability, but also describes his sensitive nature. West details Churchill’s tendency to break into tears quite easily” (West, 1997) even out in the public eye. He notes one incident in which Churchill was moved to tears after witnessing the devastating effects of a bomb.

This description of Churchill also serves to highlight the strong sense of justice that many adults with learning disabilities possess. Unfortunately, this sense of justice often serves as a double edged sword. On one hand, it is refreshing to behold the passion of many of these individuals in their fight to overcome injustice. While on the other hand, this very passion, when it crosses the line into aggression, can cause social rejection and/or emotional overload. Often the individual may be unaware that their behavior has turned aggressive. They only wish make their point known and have others understand it. This type of over reaction is not a purposeful attempt to hurt anybody. It is more likely to be caused by a difficulty with monitoring their emotions and consequent behavior.

EMOTIONAL REGULATION
Difficulties with regulating emotions are common for highly sensitive adults with learning disabilities. Dr. Kay Walker, describes the connection between learning disabilities and self-regulation problems in her paper “Self Regulation and Sensory Processing for Learning, Attention and Attachment.” She asserts that self-regulation problems frequently occur in those with learning disabilities (Walker, 2000) In its most extreme form, individual may easily shift from one emotion to the next. Others may experience difficulty regulating impulsive thoughts or actions.

Fortunately, most adults have learned to handle their emotional sensitivity to avoid becoming overwhelmed or engaging in negative social interactions. Nevertheless, some adults may be so deeply affected that they become depressed or suffer from anxiety. A lack of school, job and/or social success will likely add to this emotional burden. Some adults with LD, especially those who have been ridiculed by their family members, teachers and/or peers, may be more apt to take criticism to heart because of their experiences and/or their ultra-sensitive nature. Emotional wounds from childhood and youth may cause heightened emotional responses to rejection. In turn, social anxiety and social phobia may result.

DIFFICULTY ADJUSTING TO CHANGE
Change is scary for everyone, but for people with learning disabilities and other neurological disabilities, change may be particularly difficult. Children with learning disabilities may prefer procedures to stay the same and have a hard time moving from one activity to another. Usually this difficulty becomes less of an issue as the child matures. However, adults with learning disabilities may still experience difficulty adjusting to change in more subtle ways. For example, some adults will have trouble moving from one work task to another without completely finishing the first task before moving on to the next one. Adults with learning disabilities are frequently described as inflexible when it comes to considering another person’s view point or a different way of doing something.

Adjustment to change is difficult for adults with LD because change brings the unexpected. In general, people with learning disabilities are less prepared for the unexpected. The unexpected may bring new learning hurdles, new job demands or new social challenges. Since all these areas can be affected by learning disabilities, it is no wonder why change can produce so much anxiety for adults with learning disabilities.

To avoid the tendency to blame the person for their lack of flexibility, it is important to understand the neurological basis for this difficulty with adjusting to change. With this said, through social skills practice, adults with learning disabilities can improve their ability to tolerate change. In addition, parents, instructors and other professionals can help adults with learning disabilities by making transition processes easier through understanding and accommodating the adults’ needs.

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Since 2008, Insurers Have Been Required by Law to Cover Mental Health – Why Many Still Don’t

The Mental Health Parity and Addiction Equity Act – which requires group health insurance plans that offer coverage for mental illness and substance use disorders to provide those benefits in no more restrictive way than all other treatments – was signed into law almost five years ago. But significant hurdles are still preventing it from taking effect.

In October 2008, Congress passed legislation designed to end longstanding insurance practices that discriminated against people with mental illness and drug and alcohol addictions. It was a landmark achievement, won after a dozen years of sustained advocacy by mental health advocates. Yet implementation of the Mental Health Parity and Addiction Equity Act of 2008 has been hobbled by a lack of clear guidance from the government, and final rules governing the statute have yet to be published.

The result is significant confusion over insurance companies’ and employers’ responsibilities under the law, which currently applies to 140 million Americans who receive health insurance from organizations with more than 50 employees. In too many cases, advocates claim, consumers still face barriers to getting recommended mental health and substance abuse services.

Beginning next year, the parity law’s reach will become even broader. At that time, 32.1 million Americans – people who newly enroll in state Medicaid programs, purchase healthcare coverage through online insurance marketplaces, and buy new insurance policies sold to individuals and small businesses – will start to gain mental health coverage under the Affordable Care Act. Mental health parity will be required for all insurance policies of this kind, including those already in force, extending the federal law’s protection to yet another 30.4 million people.

That makes an understanding of what constitutes parity more important than ever. The essential concept is that people who need mental health care should be on an equal footing with those who require medical care and not disadvantaged when it comes to insurance coverage.

Some of what this entails is beyond dispute: Under the federal statute, large employers aren’t required to offer mental health benefits, but those that do can’t charge patients more for mental health care – higher co-payments, co-insurance, or deductibles – than for general medical services. Nor can they set limits on treatments – notably, caps on the number of visits – that aren’t in place on the medical side.

But several issues affecting access to mental health services and enforcement of the statute remain murky, according to advocates, mental health providers, insurance companies, and employers. State insurance commissioners are getting questions “frequently” about these and other concerns, said Sandy Praeger, the insurance commissioner in Kansas and chair of the insurance and managed care committee for the National Association of Insurance Commissioners.

A palpable note of frustration was evident at January hearings on mental health held by the Senate Committee on Health, Education, Labor and Pensions. “I am sad to say it’s been four years, four years now, that we do not have any final rules on implementing this law,” said Democratic Senator Tom Harkin of Iowa, chairman of the committee. “That’s a shame.”

Under questioning, Pamela Hyde, administrator of the federal Substance Abuse and Mental Health Services Administration, said “we are ready to produce a final regulation and we are in that process now,” but declined to say when the regulation would become available. Also in January, President Obama committed to finalizing parity regulations in his package of executive actions to stem gun violence, also without specifying a date.

That’s problematic because health insurers are currently preparing plans to be sold on state insurance exchanges being established under the Affordable Care Act. All plans must cover mental health and substance abuse services in a manner consistent with the federal parity act. If they are to become available for sale in October and effective in January, as expected, “it’s really essential that we see a final rule on [the act] before April,” said Democratic Senator Patty Murray, at the committee hearings.

Here is a look at key issues that await resolution in final mental health parity regulations:
Scope of Services – It is far from clear which mental health and substance abuse services must be covered by an employer who offers these benefits. In interim rules for the federal parity act issued in January 2010 the government outlined six categories of services: inpatient care and outpatient care (both in and out of network); emergency care; and prescription drugs. If services in any given category are covered on the medical/surgical side of the equation they have to be covered on the mental health/substance abuse side as well, it said.

However, this didn’t clarify whether a full continuum of services is required or whether only a few services in each category are enough.

Insurers and employers claim that the federal statute did not address the issue intentionally. “We believe Congress did not intend the parity requirements to govern the types of services or settings of care that may be covered,” America’s Health Insurance Plans wrote in May 2010 comments on the interim rule.

“If rules get more prescriptive and [mental health/substance abuse] benefits potentially get more expensive, that could lead an employer to drop benefits altogether, and we don’t want to see that happen,” said Pamela Greenberg, president of the Association for Behavioral Health and Wellness, which represents companies that manage mental health and substance abuse benefits.

But advocates point to problems. Without more guidance on “scope of services,” an insurer could “pick and choose services” it wanted to cover, leaving important categories of care excluded, said Dr. Henry Harbin, a psychiatrist consulting with the Parity Implementation Coalition, a group of provider and advocacy organizations.

Currently, a significant number of insurers don’t cover residential services, partial hospitalization, or intensive outpatient care for people with mental illnesses or substance abuse disorders, even though this type of care is often deemed necessary by mental health providers.

Danielle Moles, who lives in LaGrange, Illinois, has experienced the problem first hand. Moles, 32 years old and a nurse, has anorexia and exercise-induced bulimia, complicated by major depression. She’s been hospitalized repeatedly and denied residential treatment and intensive outpatient care several times by her insurance company, which provided coverage for the large hospital where she worked.

Mole admits to being suicidal at times. Unable to get the help she needs, she said, “I will sit there and cry so hard I can’t catch my breath. This is the worst kind of torture, and I don’t want the next person to go through it.”

Medical management. Controversy erupted when the government’s interim rules indicated that the parity law also applied to medical management strategies that insurers use to decide whether services are necessary and assemble provider networks, without spelling out in detail how this should be accomplished.

Insurers and employer groups cried foul, arguing that this interpretation of the statute strayed far from its original intent. The law was “designed to assure parity of medical and [mental health and substance abuse] benefits,” wrote the Society for Human Resource Management in May 2010 comments on the interim rules. “If Congress has intended for [the parity law] to regulate medical carrier operations and decision-making, they could have said so.”

“Services and practices for the treatment of mental health and substance use disorder(s) are by nature different than those for medical and surgical conditions” and therefore different medical management strategies are justified, wrote Dawn Owens, the chief executive of OptumHealth, a division of UnitedHealth Group that manages mental health benefits for more than 43 million people, in separate May 2010 comments.

In an interview, former Democratic Representative Patrick Kennedy, who helped lead the fight for mental health parity in the House of Representatives, dismissed that kind of thinking as a “canard,” and said “if we can go to the moon and back, we can design algorithms that make necessary comparisons between mental health/substance abuse services and medical/surgical services.”

A real life example of conflict over the issue has played out in Florida, where Blue Cross and Blue Shield of Florida in 2011 terminated contracts for mental health providers en masse and cut reimbursement rates by up to 30 percent in newly negotiated contracts.

In an August 2011 letter to Florida’s insurance commissioner, Connie Galietti, executive director of the Florida Psychological Association, said her association was concerned these actions might violate the federal parity law because they involved only mental health services and not medical services. In a separate letter to the insurer that month, the Parity Implementation Coalition said Blue Cross and Blue Shield of Florida’s actions might reduce access to care by inducing mental health providers to leave its network.

In an August 2011 response, Mary Beth Senkewicz, Florida’s Deputy Commissioner for Life and Health, noted that her office “has no jurisdiction with respect to enforcement of federal law” — a position that a spokeswoman affirmed she still held. Dr. Jonathan Gavras of Blue Cross and Blue Shield of Florida wrote in September 2011 that the company did not believe the changes “will inappropriately reduce participation or availability of [mental health and substance abuse] providers or that these changes would violate the [federal parity law].” The matter has been under investigation by federal officials, according to a government source who asked to speak on background only.

Disclosure – The parity act states that insurers have to provide consumers with an explanation when they deny payment for mental health services and provide access to policies that support their decisions. “You can go to any of our members’ websites and they have their policies publicly available,” said Robert Zirkelbach, a spokesman for America’s Health Insurance Plans.

But advocates argue that this information is not adequate. Insurers are not clarifying the process they use to evaluate the medical necessity of mental health services, and how this compares to processes used in relation to medical services, said Sam Muszynski, director of the office of healthcare systems and financing for the American Psychiatric Association. “When providers ask for this kind of information, they just don’t get it,” he said.

Enforcement – “Massive confusion” surrounds enforcement of federal parity legislation and this makes it difficult to pursue potential violations of the statute, said Carol McDaid, a lobbyist and co-chair of the Parity Implementation Coalition.

Part of the problem is that enforcement is divided among several agencies. The Department of Labor is responsible for overseeing large employers who fund their own insurance plans, according to an official working with the government who spoke on background only. The department has been training inspectors about how to monitor adherence to parity laws, and will look primarily for patterns of non-compliance, he said.

At the same time, state insurance departments are responsible for overseeing large employers who purchase coverage from insurance companies. Some states need to pass laws to fully enact the federal parity law, while others do not, the government consultant said. Yet several insurance commissioners, including those in Florida and Montana, have indicated they are not responsible for enforcing the federal parity law, leaving providers and consumers at a loss as to how to proceed with complaints.

Said Andrew Sperling, director of legislative advocacy for the National Alliance on Mental Illness,”Everyone hopes the final rule will make enforcement easier by bringing clarity to the rules.”

Planning for Alzheimer’s

Nothing will erase the emotional toll this disease takes on families. But you can take steps to stem the financial bleeding.

Rebecca Barnard of St. Louis spent her career as a software developer, but her passion was fine-art photography. She was detail-oriented in both her job and her hobby, says her husband, Richard Rubin. So he was surprised when he began noticing small missteps: She’d park her car at an odd angle and forget to close the car door, and she started to get lost. They had a major scare when she took the wrong train to visit family in New York and didn’t know where she was.

“There was a point at which it became apparent that something awful was going on,” says Rubin. Seven years ago, he took Barnard to a memory clinic for tests and discovered she had Alzheimer’s disease. She was just 53 years old.

A diagnosis of Alzheimer’s before age 65 is rare. But one in eight people age 65 and older start showing signs of the disease, and 45% of people age 85 and older have it, according to the Alzheimer’s Association. All told, more than five million Americans have Alzheimer’s. The cost of medical and long-term care for Alzheimer’s patients was $200 billion in 2012—not counting the estimated 17 billion hours of unpaid care by family members and friends.

Part of the tragedy of the disease is that it often strikes healthy, vigorous individuals, who then go through a series of stages that rob them of their memory, their awareness of their surroundings and, eventually, their ability to do even the most basic tasks. They typically live nearly a decade after the diagnosis and usually need full-time care, initially at home but ultimately in a nursing home. “Costs associated with Alzheimer’s disease cripple families at a time when they are also coping with the huge practical, social and emotional toll of this chronic brain disorder,” says Carol Steinberg, executive vice-president of the Alzheimer’s Foundation of America.

Scrambling for care
At first, Rubin, a software developer, worked at home and was able to take care of Barnard. “During the first year, most people couldn’t tell that anything was wrong,” says Rubin, now 65. But Barnard started getting lost in the house, and eventually even doing her morning routine became difficult. Rubin quit his job at age 60 to care for his wife full-time. “Alzheimer’s sneaks up on you,” he says. “You think you can live with it and say you’ll manage, but then it changes again.” For some people, the middle stage can last five to seven years. But the middle stage for Barnard lasted just a few months.

After a long and complicated application process, Barnard qualified for Social Security Disability Insurance benefits of $1,700 per month and received retroactive payments back to her diagnosis in 2006. Qualifying for benefits has become simpler – early-onset Alzheimer’s disease is now on the government’s “compassionate allowance” list of conditions subject to fast-track benefits approval.

Rubin hired a caregiver to give him some relief a couple of times a week. Then Barnard had a sharp decline and started to need about 12 hours of care per day. The caregivers charged about $20 per hour – totaling $240 per day. Barnard’s Social Security payments barely put a dent in her monthly care bill of $7,000, and the couple continued to drain their savings to make up the difference.

Qualifying for Social Security disability also made Barnard eligible for Medicare two years after her diagnosis, even though she was younger than 65. Medicare covered most of her medical expenses but not what Alz­heimer’s patients need most: custodial care, or the nonmedical care associated with the tasks of daily living, such as help with bathing, dressing and eating. Medicare covers that care for only a short time when skilled care is also needed, such as when an Alzheimer’s patient treated by a nurse for a broken hip needs help bathing.

Rubin eventually found an assisted-living group home with just nine residents. Barnard moved out of the couple’s home in December 2008. “Being together all the time was over, and it was the hardest thing I did in my life,” says Rubin.

The assisted-living facility cost $6,000 per month, which they paid from Barnard’s Social Security and the couple’s savings. “Basically, we had to start liquidating IRAs, and that was at the bottom of the market,” says Rubin. They spent about $160,000 for Barnard’s care during her two years there—more than their house had cost.

In fewer than four years from the time she started needing care, half of the couple’s retirement savings was gone. “I had always been frugal,” says Rubin. “I bought used cars and wasn’t a big spender. But with $6,000 going out the door every month, that’s serious money.”

The Medicaid option
Rubin met with an elder-law attorney to start planning for Medicaid to pay for Barnard’s care. But qualifying for Medicaid was tricky because Rubin was so young and had to spend down so much of his retirement kitty. The spouse who lives at home (called the community spouse) can keep all of his own income and, in Missouri, $115,920 in countable assets (such as savings). The spouse who needs care must have very little income and assets; those amounts also vary from state to state, but in Missouri, the spouse who lives in the nursing home can’t have more than $999 in assets.

If you’re the community spouse, you’re allowed to keep your home, car and assets in certain kinds of trusts. Giving away money to anyone other than your spouse within five years of applying for Medicaid can delay your eligibility. (See www.medicaid.gov for state eligibility rules and www.naela.org to find an elder-law attorney in your area.)

Because Rubin was in his early sixties, the $115,920 asset allowance would be way too little to cover the 20 or 30 years he might live in retirement. So he did some “financial acrobatics” to shift money around and keep more for his own future. He sold some stocks to buy a special Medicaid annuity, which converted that money from countable assets to noncountable income (see www.elderlawanswers.com). He also used some money to pay down his mortgage because the value of his primary residence wasn’t included in the calculation.

But even after Barnard qualified for Medicaid, the couple faced another problem: Medicaid generally doesn’t cover home care or assisted-living facilities (some states have voucher programs that let people in assisted living or home care use Medicaid). Rubin worked with the Missouri Department of Health and Senior Services’ long-term-care ombudsman and finally found a nearby nursing home that had a Medicaid bed open. “The new place is just ten minutes away and has a beautiful view of the Mississippi River,” he says. “Beck and I watch the boats on our sad, low river,” which has been affected by drought.

Even if you find a Medicaid-eligible nursing home, the facility may not be equipped for the special needs of active Alzheimer’s patients. Julie Dobson’s mother, Elizabeth Dobson, 80, started showing signs of Alzheimer’s about ten years ago. Elizabeth’s husband, Charles, took care of her in their rural New Hampshire home for several years, but eventually he needed more help. When Charles had knee surgery near Julie’s home in the Washington, D.C., area last year, he and Julie moved Elizabeth into a nursing home nearby. The facility cost $9,300 per month, which they planned to pay themselves until Elizabeth qualified for Medicaid.

The nursing home accepted Medicaid, but it wasn’t equipped to deal with physically active Alzheimer’s patients. “My mother is 80 years old, but she looks 60 and is as healthy as an ox,” says Julie. “People don’t understand that Alzheimer’s patients can be very active – they walk and walk.” But the nursing home told Julie that she’d need to hire someone to watch her mother in the nursing home – at an extra $17 per hour.

Instead, she found a memory-care facility near her home in Potomac, Md. “The people are much more like my mother,” says Julie. “The facility keeps them active – they sing and dance.” The new facility costs $7,500 per month, but it doesn’t take Medicaid. Charles is paying the bills from his savings, and Julie, 56, plans to cover the cost as long as she can after her father spends all his money. But she is also saving for retirement and for college for her two teenagers.

“You think you’ve saved enough, and it’s overwhelming,” says Julie. “My father felt financially comfortable. You can have a couple hundred thousand dollars in the bank, and it can all go in just a year or two.”

The insurance option
Neither Elizabeth Dobson nor Rebecca Barnard has long-term-care insurance. That’s the only way to get broad coverage for custodial care in a variety of locations: your home, an assisted-living facility or a nursing home.

For the policy to pay benefits, you generally must need help with at least two out of six activities of daily living (such as bathing and dressing) or provide evidence of cognitive impairment. Most policies have a waiting period – generally 60 or 90 days – before benefits kick in.

Contact the insurance company immediately after discovering your family member has Alzheimer’s. Many policies have a care-coordinator serv­ice that can help you find caregivers or facilities before the benefits kick in, says Marilee Driscoll, author of The Complete Idiot’s Guide to Long-Term Care Planning. Some newer policies from Genworth, the largest long-term-care insurer, offer its CareScout serv­ice to policyholders who are searching for care for their parents– even if their parents don’t have long-term-care insurance themselves. The program recommends caregivers and facilities and negotiates discounts.

Some policies pay for any caregiver who is not a family member, and others pay only for licensed caregivers who work for an agency. Hiring an eligible caregiver upfront helps you avoid having to find a new caregiver after the waiting period is over.

Find out how the benefits are calculated. You can’t use more than your daily benefit per day, but you can usually stretch your benefit over longer periods if you use less than the allotted amount. For example, if you choose a three-year benefit period at $200 a day but spend only $100 a day for caregivers, you may be able to stretch your coverage to six years. Or if your care costs more than your daily benefit, you might hire a licensed caregiver to provide care up to the benefit limit, then get less-expensive care from adult day care or help with basic tasks from unlicensed providers.

Early Treatment Sparks Striking Brain Changes in Autism

When given early treatment, children with autism spectrum disorders (ASD) made significant improvements in behavior, communication, and most strikingly, brain function, Yale School of Medicine researchers report in a new study.

The study was published in the current issue of the Journal of Autism and Developmental Disorders by Yale Child Study Center researchers Dr. Fred Volkmar, Kevin A. Pelphrey, and their colleagues.

The results suggest that brain systems supporting social perception respond well to an early intervention behavioral program called pivotal response treatment. This treatment includes parent training, and employs play in its methods.

ASDs are complex neurobiological disorders that inhibit a person’s ability to communicate and develop social relationships, and are often accompanied by behavioral challenges. Until recently, autism diagnosis typically did not occur until a child was about three- to five-years-old, and treatment programs were geared for this older age group. Today, Volkmar and his team are diagnosing children as young as age one. Pivotal response treatment, developed at the University of California-Santa Barbara, combines developmental aspects of learning and development, and is easy to implement in children younger than age two.

In the current study, the team used functional magnetic resonance imaging – for the first time – to measure changes in brain activity after two five-year-olds with ASD received pivotal response treatment. Study co-author Pamela Ventola used this treatment method to identify distinct behavioral goals for each child in the study, and then reinforced these targeted skills with treatment involving motivational play activities.

The team found that children who received this treatment showed improvements in behavior, and being able to talk to other people. In addition, the MRI and electroencephalogram revealed increased brain activity in the regions supporting social perception.

Their results are from two children, but the researchers are currently conducting a full-scale study of 60 children. Pelphrey said that while both children in the current study received the same type of treatment for ASD, the results were not homogenous because ASD is a multi-faceted disorder that has a unique effect on each child. Some children with ASD function on a higher level than others, for example.

“ASD is a heterogeneous disorder, and research aimed at understanding treatment must address this heterogeneity,” said Pelphrey. “Both the children in our current study made progress, but their degree of progress and level of skills at the end of treatment were distinct.”

Volkmar sees these results as a first step in a novel approach to treatment planning. “Autism research has come a long way,” he said. “These findings are exciting because they show that early intervention works in autism.”

Hearing Loss May Hasten Mental Decline

Study found seniors who struggled with hearing had earlier problems with thinking skills

Seniors who have trouble hearing may see their thinking skills slip away faster than others do, new research suggests. The study of older U.S. adults found that those with hearing problems were 24 percent more likely to develop mental impairment over six years.

The Johns Hopkins researchers don’t know for sure whether hearing loss directly causes mental decline in some cases – or whether using hearing aids might help. But they are planning to study that possibility.

“At this point, the particular neural mechanisms  – that is, the ‘why’ and ‘how’ – that link hearing loss to dementia are unclear,” said Daniel Polley, of the Massachusetts Eye and Ear Infirmary and Harvard Medical School in Boston.

What is clear is that older adults should take hearing problems seriously, noted Polley, who was not involved with the study.

“If there is a takeaway to this, it would be to encourage folks to have their hearing tested by a health professional,” Polley said.

The findings, which appear in the Jan. 21 issue of JAMA Internal Medicine, are based on 1,984 adults in their 70s and 80s who showed no signs of impaired memory or thinking at the study’s start. But the majority – 1,162 in all – did show some hearing loss.

Over the next six years, 609 men and women developed new signs of mental impairment – based on a standard test of memory, concentration and language skills. And that risk was 24 percent higher among people who had hearing problems.

The researchers estimate that it would take a hearing-impaired older adult just under eight years, on average, to develop mental impairment, versus 11 years for their peers with normal hearing.

None of that proves cause-and-effect. However, the researchers did account for a number of factors that might have explained the link, such as people’s education levels, smoking habits and health conditions such as diabetes, high blood pressure and a history of stroke.

There are reasons to believe that hearing loss could directly contribute to declines in brain function, said lead researcher Dr. Frank Lin, an otologist and epidemiologist at Johns Hopkins School of Medicine in Baltimore.

One is the fact that hearing loss can cause older adults to withdraw socially. When it becomes hard to hear what other people are saying, you might avoid going out or feel cut off from those around you, he noted.

“If you can’t hear the person across from you at the dinner table, you won’t be engaged in the conversation,” Lin said.

That matters because a number of past studies have linked such social isolation and “loneliness” to an increased risk of dementia.

Another possibility, Lin said, is that hearing loss forces the brain to devote extra resources to processing the “garbled” signals it’s getting from the ears.

“If you’re redirecting brain resources to help with hearing,” Lin explained, “that probably comes at the expense of something else – like working memory.” There are a number of ways to help manage hearing loss, including hearing aids and assistive devices such as telephone amplifiers.

The “biggest question” now, according to Lin, is whether treating hearing loss can slow declines in brain function. He and his colleagues are planning a study to look at that question.

Hearing loss is common, affecting up to two-thirds of adults older than 70. But the fact that it’s common doesn’t mean it’s harmless, both Lin and Polley pointed out. “Hearing loss is more than an inconvenience or a source of embarrassment,” Polley said. “Hearing represents a critical portal to conversation, a behavior that connects humans to one another socially and upon which our mental health greatly depends.”

Doctors do not routinely screen older adults for hearing loss, so it’s up to people to notice symptoms. Some red flags include having trouble hearing when there is background noise or when more than one person is speaking; problems hearing over the phone; and having to habitually ask people to repeat themselves.

But hearing loss also creeps up on people “slowly and insidiously,” Lin said. So it might not be you who notices it, but the people around you.

The study was funded by the U.S. National Institutes of Health. Lin is a consultant to Pfizer, which is developing a potential drug for age-related hearing loss, and has served as an unpaid speaker for Cochlear Europe, which makes cochlear implants to treat severe hearing loss.

How My Autistic Son Got Lost in the Public School System

Teachers do the best they can, but they’re not psychologists – and parents can’t expect them to be.

The waiting room was loud and chaotic. Toddlers were stacking blocks, then squealing with excitement as they knocked them over and watched them fall. Baby toys were chiming and buzzing. A cartoon was blaring on the television mounted above us.

My son Henry (not his real name) was not playing with the other children. He was nestled in my lap, quietly leafing through a picture book. My winter coat partially enshrouded him from the bedlam encircling us.

When we were finally called in, our pediatrician examined Henry physically and declared him a healthy 15-month-old. Then she began to ask me a lot of questions about his behavior. “What words does he say?” She asked.

“None,” I replied. “But he makes a few sounds.”

“How does he tell you when he wants something, like a drink or a snack or a toy?”

“I just have to figure it out.”

“Does he point to the cabinet the snacks are in? Does he point to the refrigerator when he’s thirsty?”

“No,” I answered.

The pediatrician said that Henry should be speaking more than sounds at this point, at least a word or two, and communicating with us using either spoken or nonverbal cues. She explained that he might need a little help jump-starting those skills, then she handed me a phone number for our local Early Intervention Program.

I wasn’t worried. My daughter also had a speech delay. A speech therapist came to our home twice a week to give her therapy, and now you couldn’t stop her from talking if you wanted to.

When the time came, a group of clinicians arrived with toys for Henry and paperwork for me. They asked Henry to perform various tasks, such as stacking blocks and sorting shapes by color. Henry sat in his booster chair at our kitchen table and dutifully tried to comply.

A week later I met with one of the clinicians. The team had determined that Henry did in fact have a speech delay and qualified for weekly, home-based, therapeutic services. The therapist who showed up a few days after that meeting introduced herself and then approached Henry. As she got closer, Henry’s body language changed. He was not buckled into the safety of his booster chair this time, and she was invading his space. She tried to play with him, and he started to cry. She touched his arm, and he began to wail. By the time she left, I was crying, too.

That therapist came two more times before I mustered up the courage to call the Early Intervention Program and ask for a new clinician. I worried about hurting her feelings, but she made Henry so upset, I just couldn’t watch it anymore.

Three weeks later a new therapist arrived. Henry was sitting on the living room floor playing with his Matchbox cars. This new therapist quietly watched him for a minute or two. “Does he always play like this with his cars?” the therapist asked.

“What do you mean?” I replied.

“Does he always arrange them in a line like that?”

“Yes. He always makes a long line. Sometimes he sorts them in the line by size, color, or style. He can sit for hours doing that.”

She nodded. I thought it was almost brilliant that a 16-month-old could arrange such a large grouping so meticulously and amuse himself for so long. I wondered if she thought so, too. The therapist then approached Henry slowly. She lowered herself and sat cross-legged about a foot and a half away from him.

“Hi, Henry. My name is Hope. Can I play with you?”

Henry ignored her.

“Can I have one of your cars to play with?”

Henry continued to ignore her.

She reached out to touch one of the cars, and Henry’s body began to shake. He made a sound, the beginning of a cry.

Hope pulled her hand away. “That’s okay, Henry. I brought some of my own toys.”

She reached into a bag and pulled out a wooden puzzle. Henry glanced over at the toy.

“Would you like to play with my puzzle, Henry?”

Henry cautiously assessed the scene and then moved a few inches closer to her.

“This is how you do it.” She demonstrated how to take the large wooden pieces out and put them back in. Hope then handed Henry a piece. He took it from her hand and tried to fit it into one of the openings.

“Oops. Doesn’t fit there,” Hope confirmed.

Henry kept trying. When he maneuvered the piece into the correct spot, Hope exclaimed, “You got it! It fits!”

Henry smiled.

Hope continued to work with Henry, one-on-one, for another year and a half, right up until Henry “aged out” of early intervention and transferred to a special-needs preschool. She built a relationship with Henry and, eventually, she was able to remove one of those Matchbox cars from the line without Henry’s falling apart.

Henry loved Hope. Her name was one of his first words.

* * *

I tell this story of Henry’s first therapists because somewhere along the way I forgot it myself. It came back to me only very recently.

Henry was in preschool when he was first diagnosed with pervasive developmental disorder. We were told, “The more therapy, the better, at his early age,” so we barraged Henry with assistance. In that mission to get him as much help as possible, I somehow forgot that very first therapy experience. I forgot that not everyone would have the right background or the right attitude to deal with my child.

During free playtime, I saw Henry playing in a corner by himself while the other children played together.

I forgot this when Henry was walked out of the building one day in his very first year at our town’s special-needs preschool. I learned that Henry had been kept back from recess while the other kids went out to play. The school explained it was a consequence of his behavior—he would not allow the teacher to zip up his coat for him to go outside, and he became irate. When I sat down with Henry in the safety and peacefulness of our own home, I asked him if he could try to tell me why he would not allow the teacher to zip his jacket.

Henry told me, “I-I-I z-z-z-i-pppp.”

I immediately understood. For the past few weeks, I had been working with Henry to teach him how to operate a zipper. He had been trying to tell the teacher that he knew how to do it himself. This was great progress for Henry, but the teacher didn’t understand and punished him for it.

I forgot about Hope when I dropped by the public kindergarten numerous times unannounced, just to peek in and see how Henry was doing. During free playtime, I saw him playing in a corner by himself while the other children played together. During recess, I saw him sitting alone under a tree as the other children played tag or conquered the playground equipment.

I forgot yet again, when Henry moved to our town’s primary school at the beginning of third grade. The summer before this transition, Henry had seen another pediatric developmental specialist, who told me what a sweet and intelligent boy Henry was. Then she said, “Henry qualifies for an autism spectrum disorder diagnosis.” I remember thinking her choice of words made it sound like we had won some grand sweepstakes, like Henry was now part of some exclusive club.

Henry’s updated diagnosis didn’t really change anything from my point of view – we were still dealing with the same challenges that we had been dealing with for years. However, this diagnosis was more concise, easier for other people to understand. Everyone knows the word “autism.”

Henry had been on an Individual Education Plan (IEP) — a legal document spelling out the specific educational accommodations he needed — since preschool. He would continue to stay in his mainstream classroom and be pulled out for speech and occupational therapy. The elementary school team told me they would make sure he was adjusting to the new school’s larger environment.

Unfortunately, again, no one was paying attention during the most difficult parts of Henry’s day – the unsupervised social settings. Henry suffered a serious breakdown that year. He hadn’t told anyone, but, as it turned out, he had been bullied on the school bus for months.

I was angry and frustrated, and so very tired. My youngest child, Henry’s little brother, had started preschool three days a week. I had gone back to work part-time, but I spent every free moment researching autism.

When I stumbled upon an article about Asperger’s Syndrome, I knew this was what Henry was living with. The sequential obsessions, the above-average intellect but below-average social awareness, the need for stringent routines, the repetitive hand movements, the lack of interest in relationships with peers – he fit this diagnosis perfectly.

I explained this to the developmental specialist, but she told me, “No. The major difference between Asperger’s and autism is the speech delay. Children with Asperger’s don’t have speech delays.”

How can this be, I wondered, when he exhibits every other characteristic of this disorder? But I’m not an expert. She knows better than I do.

Hope and Henry’s story continued to elude me after he came home from school for the third time soaked through his clothes. The teacher had designated specific times for restroom breaks, and Henry was afraid to speak up if he had to use the bathroom outside of those times. He likes rules, and he follows them, to a fault. When he had an accident, he was too ashamed to tell anyone, so he sat in his own urine for hours. Not one staff member at the school ever noticed.

In fifth grade, Henry wanted to try out for the school play. I was extremely nervous, but also overjoyed that he wanted to participate. I wrote a note explaining to the theater director that Henry had autism and needed specific instructions on when and where to do things.

After the play was over, all the children eagerly emptied out of the auditorium to find their parents. The crowd slowly dissipated, but still there was no Henry. I started to panic and began to search the school.

I found my son waiting in the back of the cafeteria, all by himself. At the end of all the rehearsals, the kids had been told to wait in the cafeteria and not to leave until the theater teacher had dismissed them. Henry could not identify the difference between rehearsals and the actual production, so he’d gone to the cafeteria, as always, and waited to be dismissed.

None of Henry’s teachers had bad intentions, but none of them fully understood what Henry needed. And none of them had the courage to admit that the public system they were a part of wasn’t working for my son. I continued to hear, “The public school is the best place for Henry. We can provide him therapy and special education services here.” And I continued to believe it.

By this point, however, I was starting to lose faith in what the developmental specialists were telling me. An autism support website mentioned a psychologist not too far from me who specialized in Asperger’s. We visited his office, and after spending some time talking with Henry, the psychologist explained that he had seen many patients with Asperger’s who also had a speech delay. He went on to tell us that the entire spectrum of autism diagnoses was under review. He said, on the basis of his experience, Henry did, in fact, fall into the Asperger Syndrome category.

After that visit, Henry had an afternoon of neurological testing, and when the results were calculated, his diagnosis was confirmed. He fell in the part of the spectrum for Asperger Syndrome.

It was like I had been combing the five boroughs of New York, mindlessly searching block after block for a specific boutique that sold the exact item I needed. Then, after months of searching, someone had handed me a map with the neighborhood I was looking for circled in bright red ink. I could now focus my search and find the specific help Henry needed. That’s when I finally remembered the story of Hope and Henry.

In early June of this year, I got a call from the office at Henry’s school. Henry had forgotten to change out of his pajama top that morning. My other kids would have joked about it and worn the top throughout the entire school day. Not Henry.

The secretary told me that Henry was distraught and would not go to class. She seemed a bit annoyed, and I understood. She had hundreds of children to deal with, and this was an unwelcome disturbance in her day. I assured her I would be right down with a new shirt for him.

When I arrived in the office, I saw Henry sitting in one of the waiting area chairs, quietly sobbing. Next to him was his teacher, Mr. Danforth. (I’ve changed his name for privacy.) Once Mr. Danforth was informed of the situation, he had gotten an aide to watch his class so he could sit there with Henry, waiting for my arrival.

This was typical of Mr. Danforth, and it was why fifth grade was Henry’s best school year ever. Mr. Danforth tried to understand Henry. He made lots of small concessions that made a big difference.

Special-education departments focus on helping students with learning disabilities. But kids with Asperger’s often don’t need academic support.

Every time Henry bought lunch, he exited the cafeteria line and stood aimlessly at the front of the lunchroom, looking in vain for a seat near the few kids Henry felt comfortable with. Henry liked buying lunch, but he hated being in this situation. For quite a while, he brought pasta and sauce in a thermos every single day so he could find a seat before the crowd arrived.

When Mr. Danforth discovered this, he told Henry he could leave class a few minutes early so he’d be first in line and could find an open seat. Problem solved.

When Mr. Danforth learned that Henry was still shy about going to the bathroom without permission, even though his IEP allowed it, he said, “Henry, I know you’re going to the restroom at nine, eleven, and two every day. You have my permission for the rest of the school year.” That’s all Henry needed to hear.

When Henry felt invisible, Mr. Danforth decided to do a class project on Fenway Park’s season opener, knowing that Henry’s latest obsession was baseball. He suggested, “Henry, why don’t you go up to the board and give us your version of an opening day roster?” Henry didn’t hesitate. He proceeded to the board and listed out who he believed should be playing and what their batting order should be. He knew every player available and each of their individual statistics. The other kids in the class were mesmerized and asked, “Henry, how do you know all that?”

Mr. Danforth took the time to build a relationship with Henry, to get to know who he was and what he needed. Mr. Danforth was a good fit.

* * *

The autism spectrum is wide and varied, and every autistic person is unique. People like Henry need someone looking out for them, particularly in overwhelming environments like school. The problem is that public schools are mostly worried about academics and test scores. They have to be – their success in those areas dictates the percentage of state and federal funding they get. Few schools have designated psychologists (most often, multiple schools share the same one). Teachers aren’t psychologists, and asking them to be is not fair.

This puts kids with Asperger’s in a particularly precarious spot. Many of these children are above average academically, even gifted in certain subjects. Special-education departments tend to focus on helping students with learning disabilities. But kids with Asperger’s often don’t need academic support. They need help navigating social interactions. When typical middle school boys are showing interest in girls and competitive sports, their Asperger’s counterparts are often still playing with toys and building with Legos. The Tooth Fairy and Santa Claus are still very real for many of these kids, even as they approach the teen years.

My husband and I knew that the middle school where Henry was headed in September, with its 1,200 students and constantly changing schedule, was a disaster waiting to happen. And we knew that Henry’s unusual mannerisms, rigid routines, and monotone speech would make him a target for bullies.

When we met with Henry’s counselors, psychologist, and administrators to discuss the transition, everyone assured us he would do just fine. But they could not offer him a specific person — an educational aide or a designated teacher — who would be responsible for guiding him through. After that meeting was over, I turned to Mr. Danforth and said, “I’m worried.”

“I am too,” he replied.

I went home and entered Henry’s name in the lottery for two smaller charter schools. I spent the rest of that afternoon looking into private schools, but found that most of them were not only too expensive for us but also ill-equipped to deal with a student like Henry.

* * *

Later that June evening, while our two boys played happily in the backyard, I shared the day’s events with my husband. I explained that even in a class with one of the most caring, competent teachers Henry had, I’d still needed to drive to school with a new shirt because Henry couldn’t wear a pajama top in public. Henry’s older sister had heard about the incident from her friends with younger siblings at Henry’s school. The kids thought Henry was weird because “what fifth-grader cries over wearing a pajama top?”

My husband and I both sat silently for a moment. Then I said it: “I can’t send him to the public middle school. I just can’t.”

My husband let out a sigh and replied, “I know.”

I sat my son down later that week and asked him, “What do you think about homeschooling?”

“I don’t think I’d like that.”

Great. I’m out of options, buddy.

I pleaded, “But Henry, I feel like you’re really nervous about going to the middle school next year, and that’s part of why you’ve been really sad and upset lately. What do you think?”

“So I would stay home with you?”

“Yes. But we could try and find some outside classes, too. And you wouldn’t get so tired at the end of the day, because we could take breaks when you needed them and get more done in less time.”

“So the school day would be shorter?”

“Definitely.”

“Okay. I guess we can try it.”

I eventually found a company that offered an all-inclusive, non-religious-based, sixth-grade curriculum. At the end of every month, I’d send in Henry’s assignments and a teacher would give him his grades.

On the first day of school, Henry and I sat down at the kitchen table, both of us still in our pajamas, pencils in hand, and started going through a sixth grade English workbook I had picked up the day before.

We learned about suffixes and prefixes. And we laughed about the silly words the publishers had chosen to illustrate the concepts. We took breaks when we needed to. We had lunch together. Later that afternoon, instead of being exhausted and irritable, Henry asked if a neighbor boy could come over and play. Henry rarely asked for anyone to come over to play. Just trying to get through a day of traditional school had drained every ounce of energy he had.

By the end of that very first day of homeschooling, I knew that everything was going to be okay. Henry and I were going to get through this. Better than that, we were going to do great.

* * *

We’ve been homeschooling a few months now, and the change in Henry is nothing short of miraculous.

Through a neighbor, I found a local homeschool group that gets together every week for three hours in the afternoon. Instead of a 20-minute recess, in which Henry hides behind a tree trying to manage the chaos, he has hours to play with a group of seven to ten other children. He is building real relationships now for the first time in his life.

We found a home-school enrichment program, where Henry takes math and geography classes once a week with four other children. He loves it. Instead of pushing him out the door for school, I find him standing by the door asking, “When can we get going?”

Henry is still on an IEP and continues to receive some therapeutic services at the public school. I contacted one of the science teachers there, explaining that Henry would really love to participate in her after-school robotics club. She said, “Absolutely! Bring him over!” As far as I know, I am the only parent in our district who has constructed this type of cooperative agreement with a public school. Henry is unique. We needed a unique solution. We found it.

This is not to say that the last few months have been easy. I work all day Friday, Saturday, and Sunday in order to be home during the week for Henry. I miss my children’s baseball and volleyball games. My husband works as hard as I do and helps wherever he can, but it’s a daunting task.

But as parents, we make decisions based on a variety of experiences.

That moment when I entered the school office with a new shirt for Henry, and I saw him sitting there sobbing, it wasn’t logic that spoke to me. It was the very core of who I am — the mother, the human being — who said, “No more.”

Since that moment, I’ve had to stand my ground with psychologists and educators, and even family. I am no expert on parenting, on autism, or on homeschooling. But I am an expert on Henry. I know him best.

I am Henry’s Hope now, and I know, unequivocally, I’m the most qualified person for the job.

by AMY MACKIN

Most Parents of Overweight Kids Don’t Hear It from the Doctor

Parents hate hearing that their kids are fat. It’s far more delicate for doctors to use the term “overweight.”

But even providers who’ve mastered the art of informing parents in a tactful way that Junior needs to slim down aren’t necessarily sharing that information with parents. Just one quarter of parents of overweight kids say they’ve been told by a doctor that their kids weighed too much, according to a new study published in the Archives of Pediatrics & Adolescent Medicine.

The percentage of doctors telling parents that their children are overweight has increased in the past decade, but not enough are doing so — or they’re apparently not communicating in a manner that’s sinking in.

“Parents might be more motivated to follow healthy eating and activity advice if they knew their children were overweight, but very few parents of overweight children say they have ever heard that from their doctor,” says Eliana M. Perrin, lead author of the study and an associate professor of pediatrics at the University of North Carolina at Chapel Hill (UNC) School of Medicine, in a statement.

Researchers at UNC looked at 4,985 children ages 2 to 15 years old who had a body mass index (BMI) at or above the 85th percentile; data on the children were collected between 1999 and 2008 as part of a national survey.

In 1999, just 19% of parents recalled a doctor informing them that their child was overweight. By 2008, that percentage had climbed to 29%, which was a step in the desired direction. Still, only 58% of parents of very obese children reported hearing the news from a doctor.

Why aren’t more doctors having this conversation? Undoubtedly, some prefer to avoid what couldn’t help but be an unpleasant exchange. Yet it’s hard to imagine a physician ignoring an increasingly prevalent risk factor for unhealthy outcomes: researchers estimate that one in three U.S. kids are overweight.

Assuming doctors broach the subject, the key to motivating and not alienating parents is sensitive language, according to a September study in Pediatrics that found that mom and dad cringe if they hear their darling described as “chubby” or “fat” or “obese.” Parents prefer that doctors simply raise the topic of a child’s weight, using terms such as “high BMI” or “unhealthy weight.”

“Many people find the term ‘fat’ to be pejorative and judgmental,” says Rebecca Puhl, the study’s lead author and  director of research at the Rudd Center for Food Policy and Obesity at Yale University. “A lot of the time, providers have positive intentions, but the language they use can be seen as blaming, accusatory and not helpful.”

Parents Create Housing Alternative for Disabled Adult Children

Baruch and Joyce Schur were out of options. They couldn’t find anywhere for their physically and intellectually disabled 26-year-old son to live, at least nowhere that met their criteria or didn’t have a yearslong waiting list.

The 55-year-old couple made plans to move out of the state. Uprooting themselves from their native Chicago, leaving friends and a family business, was the only way to give Josh a home — not an institution — that offered independence, a kosher kitchen and a sense of community before his parents became too elderly to care for him.

But then the Schurs took an even bolder step. They joined forces with five other families in similar circumstances to do what government could not: They created something better. They become a nonprofit, raised their own money, bought their own property, hired a design team and a social services agency to staff a home. This month, six young men — with cerebral palsy, autism and Down syndrome — moved into a red brick Georgian on a lush block in the same Rogers Park neighborhood where they grew up.

Other parent-empowered groups are also rolling up their sleeves, joining this quiet crusade. A Glenview couple is working with Rush University Medical Center to construct housing for young adults with autism in the West Loop. In Wheaton, another family group collaborated with their church for a similar project.

In a previous era, children such as Josh Schur would have been institutionalized, their parents told to leave them in the hospital and forget about them. Today, because of medical advances and sweeping public policy changes, children with disabilities are not just surviving but thriving into adulthood. And no one knows what to do with them all.

There are 1 million to 1.5 million Americans with autism alone, 80 percent of whom are under the age of 22, according to the federal Centers for Disease Control and Prevention. In Illinois, about 22,500 people with disabilities are waiting for services, the Department of Human Services reports.

“The statistics are frightening,” said Tony Paulauski of the Arc of Illinois, an advocacy organization. “What’s going to happen to all these folks? We are bracing ourselves for a demographic wave … and we are totally unprepared.”

These young adults were born into a very different world than earlier generations. Parents started seeing their offspring for what they could do — not just what they couldn’t. They pushed clinicians for more physical, occupational and speech therapy and lawmakers toward mainstreaming policies. No longer hidden away, these youngsters were now woven into society, participating in school plays, soccer and Boy Scouts.

Then, at age 22, most publicly funded services end. As the kids get older, the journey gets lonelier. Some 80 percent of young adults with autism ages 19 to 30 still live at home, according to a 2008 Easter Seals study.

“People see how futile the situation is,” Paulauski said. “And as government continues to shrink, it becomes even more important that families look at other sustainable models.” The Schurs, who have two other sons, were being consumed by the day-to-day challenges of raising a child with cerebral palsy. The visits to doctors, the financial pressures, the physical demands all exact a steep toll. For example, Joyce Schur would call her husband at work when Josh needed to go to the bathroom because she no longer could lift her 130-pound son from his wheelchair.

“I watched these kids grow up, and I couldn’t believe that we had nothing for them,” said Shana Erenberg, a special education consultant. “I was embarrassed for my state.” So when Baruch Schur called Erenberg in 2009 to say they had bought a house in New York that offered more and better services, “it was the last straw,” she said. “He was the fifth or sixth parent to call me that week (with concerns about housing) … and I just had enough.”

For Schur, it was the only solution. “If we stayed in Illinois, we had two choices: A nursing home or a nursing home,” he said.

That night, Erenberg set out to create a home that offered safety, friendship, kosher food, activities and interiors that said “Pottery Barn” more than “state facility.” She reached out to Ald. Debra Silverstein and, along with Baruch Schur, they identified six potential residents and took their proposal to the other parents, who listened politely but didn’t have a lot of faith that such a vision would become a reality, Erenberg said.

“They told us: ‘We’re exhausted.’ And we said, ‘Let us carry the ball for a while.'” That’s how the Libenu Foundation — Hebrew for “our heart” — gained traction. Parents and other volunteers scoured the nation for models, cherry-picking the best practices at residences from New York to Phoenix, then patrolled the Orthodox Jewish neighborhood for property, eventually settling on a three-bedroom home, which cost $400,000. They poured in another $600,000 to make it seven bedrooms and handicap-accessible.

Each family made a financial commitment — although they declined to give an exact amount — and held numerous fundraisers, taking their story to anyone who would listen. The bricks and mortar are only one part of the equation. Services such as aides, transportation, recreation and personal care are managed by Clearbrook, an Arlington Heights-based agency, and are paid for, in part, with public funding.

One of the most expensive items was an elevator, needed only for Josh Schur. His parents argued that this wasn’t cost-efficient, but the other families insisted that it stay in the budget. If this venture is to work, they said, it has to work for everybody.

Still, debate could turn heated at times. Should they have live-in staff or employees working an eight-hour shift? And how would they juggle residents’ many dietary needs?

“I couldn’t believe we could get so far … only to have it all fall apart over a gluten-free challah,” Erenberg said.

And there also was opposition from the neighborhood. Rumors percolated about a halfway house for unwed mothers and ex-convicts. “Anytime you have change, you bring in fearfulness,” said Silverstein, who quelled concerns at a block meeting.

Finally, in late December, the young men moved into their new home, a triumphant moment, as the residents checked out their new rooms. Another residence for six young women is scheduled to open in Skokie this week.

The benefits of small, family-scale housing versus large institutions is a matter of individualization and autonomy. Like anyone else, people with disabilities are happier when the environment adapts to their needs and interests, from what they want for dinner to what movie they want to watch to what time they want to go to bed.

Jane Doyle has seen the growth of this movement since opening the Center for Independent Futures in Evanston, which trains parents to create housing for their children. A decade ago, Doyle was a trailblazer when she and another mother started the nonprofit to help their own two disabled daughters, who were eager to take the next step after high school, just like everyone else. A bed at a state facility in Peoria isn’t what the mothers had in mind.

After one particularly disheartening day perusing traditional venues, Doyle announced she was done. “Why try to fix an overburdened system?”

They opened their first home, a three-flat in Evanston, in 2004. To date, the center has created 12 residences, mostly in Illinois. The nonprofit is working with seven family groups, from Sarasota, Fla., to Los Angeles.

“When families get together and have a chance to be creative, it’s amazing what can happen,” Doyle said.

Many of the inquiries to the Center for Independent Futures come from siblings of disabled adults who suddenly find themselves thrust into the role of caregiver after the death of a parent, Doyle said. “They have their own jobs, children, lives — and they call up and ask, ‘What do we do?’ They have no preparation whatsoever.”

Joan Katz, one of the Libenu parents, was determined that would not happen. Her son, Jacob Mosbacher, who has Down syndrome, has been the beneficiary of years of enrichment and learning. At 25 he is an artist who has displayed at city galleries, has his own website and proudly pointed out the colors and finishes he selected for his new home, while she beamed. “As a parent, this is a blessing, but for siblings, it’s a double blessing,” she said. “And for Jacob? It means he has a life.”

Wave of Telemarketing Scams Target Seniors

Seniors nationwide are reporting pushy, suspicious telemarketing calls from businesses going by the names “Senior Emergency Care,” “Senior Safety Alert” or ”Senior Safe Alert.” Follow our advice to tell a legitimate sales call from a telemarketing scam.

How the Scam Works
You receive a prerecorded telemarketing call pitching a personal emergency alarm system. The alarm, warns the recording, is necessary to protect against a long list of dangers, such as break-ins and medical emergencies. It claims that you can get an alarm system worth several hundred dollars installed for free. You are just responsible for a monthly charge of about $30.

The recording prompts you to press a button and speak to a live person for “verification.” However, victims reported that staff refuse to provide basic business information, such as the address.

The exact details of the scam vary. The alarm business goes by a variety of names, including “Senior Emergency Care,” “Senior Safety Alert,” “American Senior Benefits Program,” and “Senior Safe Alert.” Typically, the calls appear to come from an area code in the surrounding region, but these numbers can be misrepresented.

In some cases, the sales calls are pushy but legitimate. In others, the calls are phishing scams that impersonate real businesses and seek credit card numbers and personal information. Use the tips below to tell a scam from a sales pitch. Many of those contacted by the telemarketers were on the Do Not Call Registry. If this includes you, you can file a complaint here. You can also file a complaint with the FTC.

How to Spot a Telemarketing Scam
If a call does the following, it’s probably a scam:

  • Tries to create a sense of panic. In this case, the call alarms seniors by describing a situation where they are incapacitated at home and cannot call for help. Also watch out for calls that push for immediate action.
  • Promises something for free… that really isn’t. Be wary of “free” offers that ask you to pay a handling fee or other charges.
  • Implies an endorsement from a well-known organization. In this case, the call claims the alarm system is endorsed by the American Heart Association and the “American Diabetic Association,” which is really the “American Diabetes Association.” Others claim a good BBB rating, so be sure to check this on BBB.org.
  • Just as scam emails often contain misspellings and grammar errors, watch for errors in fraudulent calls, such as referring to the American Diabetes Association as the “Diabetic Association.”
  • The business doesn’t have a legitimate mailing address and website.

Miss Montana: Autism Doesn’t Define Me

I knew there had to be a reason my family and I went through tough days together. I didn’t understand why then, but the past couple of weeks have put so much into perspective.

The lonely days of pacing around my kitchen seemed like some of the longest days of my life. If anyone had told me then that I would be wearing a crown, an evening gown, heels and a swimsuit in front of a live audience with bright lights and television cameras hovering around, I’d have been the first one to dismiss it.

I realize now that even my toughest days pale in comparison to the toughest days of others living with an autism spectrum disorder. I’ve been given this opportunity to use my voice for those who don’t have one or have yet to find theirs.

My path may not be one that another person would choose, but I challenged myself to enter the Miss America competition because it seemed like the peak to my own personal Everest. It also seemed kind of ironic: a girl who was told she was different and considered an outcast by many, in the nation’s biggest beauty pageant.

I knew I would face challenges and even some skepticism, but I never expected the outpouring of support that continues to come in.

Winning the America’s Choice title during the competition was the highest honor for me. The fact that so many people, to whom I am a total stranger, took the time to elect me as their contestant of choice is something I am still trying to comprehend.

The glitz and the glamour may have faded from the wonderful experience of Miss America, but my commitment to raising awareness about autism and building bridges of acceptance grows stronger each day — especially after I read e-mails, Facebook posts or tweets from the people who have supported my journey.

I will be successful if just one person encounters a child who is overstimulated without staring, if one teenager invites an “outcast” to lunch or just smiles at him or her, or if one employer gives a job to someone who might not be able to look the interviewer in the eye.

I also hope that families reading my story who feel isolated or have concerns and questions about their children know they are not alone — there is a wonderfully loving community with people just waiting to be your friend and mentor.

One thing I have learned in partnering with organizations like AbilityPath.org and Generation Rescue is that the special needs community is one of the most loyal and supportive groups anyone could join. I’m honored to be a part of this new circle of friends, and have no doubt that it was the people who found me relatable and believed in me that helped me become America’s Choice.

I don’t know what tomorrow will bring, but I do know there is a lot for me to do to make sure people really get that “Normal is just a dryer setting.”