House Speaker Joe Straus vows to reverse cuts to disabled kids' therapy services

House Speaker Joe Straus vows to reverse cuts to disabled kids' therapy services

In a wide-ranging interview with the Texas Tribune's Evan Smith, House Speaker Joe Straus shed light on his priorities for state lawmakers.  

BY EDGAR WALTERSNOV. 29, 2016 11:14 AM

Texas House Speaker Joe Straus said Tuesday that lawmakers in the Capitol’s lower chamber would seek to restore funding for disabled children’s in-home therapy services during the upcoming legislative session, potentially reversing the state's course in an emotionally fraught, year-long legal battle.

“It did not work, and it will be addressed in the supplemental budget,” Straus said of the payment cuts. He said the cuts were “well intentioned” but that “maybe they were a mistake.”

State lawmakers in 2015 ordered a $350 million cut to the amount that Medicaid, the federal-state insurance program for the poor and disabled, pays speech, physical and occupational therapists who serve medically fragile children.

A group of concerned Texans, including therapy providers and the families of children who receive their services, filed a lawsuit seeking to block the cuts. They lost, but the legal maneuvering tied up the budget cuts in court for more than a year. State officials announced Monday they would finally begin reducing some therapy providers’ payments on Dec. 15.

In the meantime, health insurance companies in the state’s privatized Medicaid system, known as managed care, began implementing their own pay cuts to providers. That prompted outcry from disability advocates, who said the cuts were causing children to lose access to needed health care providers.

Straus said Tuesday he intended to restore the cuts in a supplemental budget. During every legislative session, lawmakers usually pass a supplemental budget that addresses funding needs in the current two-year budget cycle. A spokesman said Tuesday that Straus would move to fully restore the Medicaid funding.

The Medicaid cuts emerged late in the 2015 legislative session out of private budget negotiations between the House and the Senate. Straus appeared to distance himself from the push for the controversial budget cut, saying Tuesday that the idea originated in the Senate.

In a wide-ranging interview with Texas Tribune chief executive Evan Smith, Straus also shed light on his other priorities for state lawmakers — and exposed some possible fault lines with Lt. Gov. Dan Patrick, who oversees the Capitol’s upper chamber.

Straus said that in addition to allocating funding for disabled children’s health care, he would prioritize funds to shore up the foster care and Child Protective Services systems and make improvements to the state’s mental health care safety net.

At the same time, Straus downplayed the urgency of politically touchier proposals that have risen to the top of Patrick’s priorities list — including an anti-transgender bill regarding bathroom use, which is opposed by business leaders, and proposals to crack down on “sanctuary cities,” a vague designation for municipalities that pass protections for undocumented immigrants. 

On Patrick’s proposed “bathroom bill,” which in many situations would prevent transgender Texans from using public bathrooms that match their gender identity, Straus said the legislation wasn’t “the most urgent concern of mine.” On sanctuary cities, Straus said only a “constructive” bill would find open arms in the Texas House, adding that pro-immigrant protections “may not be as widespread of a problem” as some people think.

Asked about the ideological differences between Straus and Patrick, the House Speaker said his leadership style was different because he is not a statewide elected official. For example, he has not explicitly laid out priority bills for passage in 2017 — in contrast to recent announcements by Patrick — because, he said, “I think the House members would string me up if I said, ‘Here’s your bill — pass it.’”

Straus, an early backer of Jeb Bush who never publicly endorsed president-elect Donald Trump, said he thought the divisive November presidential election “wasn’t great for the country.” Still, he said he looked forward to working with the Republican administration.

Straus said Texas lawmakers could not afford to continue ordering funding increases for border security and called on the incoming Trump administration to shoulder some of those costs.

“It’s time for the federal government to assume their responsibility,” he said. 

Straus also said it was “too early to tell” whether there would be room in the state budget for additional tax cuts in 2017. Falling oil prices have state lawmakers anticipating a budget shortfall when they convene in Austin next year. In 2015, lawmakers approved $3.8 billion in tax relief, including a reduction in the franchise tax rate paid by businesses. 

On education policy, Straus called for reforms to the state’s school finance system, which the Texas Supreme Court upheld as constitutional in May while sharply criticizing it as in need of improvement. “If we do nothing, it will be truly a crisis that we will be responsible for,” Straus said. 

As far as “school choice,” another of Patrick’s legislative priorities, Straus said the House would “keep an open mind.” He said he favored giving parents the right to choose where they send their children, whether that be to charter schools, to a variety of public schools within their school district or, in some cases, to schools outside of their district.

But Straus was less embracing of private school vouchers, a topic Patrick favors. “If the focus of the session becomes on vouchers, then there could be some" resistance, he said.

Texas moving forward with budget cuts for disabled kids' therapy services

Texas moving forward with budget cuts for disabled kids' therapy services

In two weeks, Texas will officially enact cuts of Medicaid reimbursement rates for disabled children's therapy services.   

BY ELENA MEJIA LUTZ AND EDGAR WALTERSNOV. 28, 2016 5:21 PM

Lauretta Jackson, a physical therapist from Any Baby Can, works with Sara weekly to improve her body strength. Nonprofit therapy providers are worried budget cuts made by lawmakers will put them out of business.  Callie Richmond

More than a year after lawmakers originally ordered it, Texas announced Monday it will enact significant cuts to the money that it pays therapists who treat vulnerable children with disabilities in two weeks.

Medicaid reimbursement rates are used to pay for pediatric therapy services provided to disabled babies and toddlers. Carrie Williams, spokeswoman for the state's Health and Human Services Commission, said that Texas will apply cuts on Medicaid rates on Dec. 15 in attempt to achieve savings directed by the Texas Legislature in 2015.

"The most important job we have is making sure kids have the services they need and that we are responsible with taxpayer dollars," Williams said in an e-mail. "We will monitor the reduction of rates to ensure access to care is not impacted and that Texans around the state receive the much-needed therapies required to improve their lives."

A group of concerned Texans last year filed a lawsuit seeking to block the $350 million cut to Medicaid, the federal-state insurance program for the poor and disabled, from taking effect. That group included speech, physical and occupational therapy providers and the families of children who receive their service. They argued that the cuts were so steep that providers would have to close their businesses and forgo seeing as many as 60,000 children.

In September, the Texas Supreme Court declined to hear their case, upholding a lower court's ruling that the lawsuit lacked standing.

The commission and several health insurers with state contracts have spent the last year arguing that the cuts will not cause children to lose access to services. State officials point to a state-commissioned study that found in-home therapy providers were overpaid by Medicaid when compared to other public insurance programs.

But Stephanie Rubin, chief executive of the advocacy group Texans Care for Children, said in an e-mailed statement that schools will now have more students who will struggle in classrooms and need expensive special education services. 

"This is terrible news for Texas kids with disabilities and developmental delays and their families," Rubin said. "Kids with autism, speech delays, Down syndrome, and other disabilities and delays rely on these therapies to learn to walk, communicate with their families, get ready for school, and meet other goals."

The advocacy group recently released a report outlining how enrollment in the state's Early Childhood Intervention program, which provides therapy services for for babies and toddlers with disabilities, dropped 14 percent from 2011 to 2015 after continued funding cuts and policy changes. 

In the statement, Rubin called on Gov. Greg Abbott, Lt. Gov. Dan Patrick and legislators to stop the cuts before they take effect. 

"Our most vulnerable children and their struggling families should not bear the brunt of this shortsighted and cruel budget decision," Rubin said. "Texans are watching to see what state leaders do to protect services for these kids."

John Branham, spokesman for Any Baby Can, a nonprofit provider in the state’s Early Childhood Intervention program, said the state's cuts would likely amount to a loss of hundreds of thousands of dollars in support for the organization.

“We either close that gap or evaluate whether or not our program will be sustainable,” Branham said. “By taking therapies away from children, you’re not solving a problem, you’re just pushing a problem down the line. We’re trying to get these children school ready. The problem is not going to go away.”

What Are "Special Needs"?

What Are "Special Needs"?

By Terri Mauro

Updated May 27, 2016

One Term, Many Definitions:

"Special Needs" is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.

Minuses and Pluses:

"Special needs" are commonly defined by what a child can't do - by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will always mourn their child's lost potential, and many conditions become more troubling with time. Other families may find that their child's challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.

Different Concerns:

Pick any two families of children with special needs, and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioral challenges.

Medical Issues:

Medical issues for children include serious conditions like cancer and heart defects, muscular dystrophy and cystic fibrosis; chronic conditions like asthma and diabetes; congenital conditions like cerebral palsy and dwarfism; and health threats like food allergies and obesity.

Children with medical issues may require numerous tests, long hospital stays, expensive equipment, and accommodations for disabilities. Their families have to deal with frequent crises, uncertainty, and worry.

Behavior Issues:

Children with behavior issues don't respond to traditional discipline. With diagnoses like ADHD, Fetal Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome, they require specialized strategies that are tailored to their specific abilities and disabilities.

If those strategies are not developed and used, kids with behavior issues throw their families into chaos and are seriously at risk for school problems. Their parents need to be flexible and creative.

Developmental Issues:

Developmental disabilities are some of the most devestating for a family to deal with, changing visions of the future and providing immediate difficulties in caring for and educating a child. Diagnoses like autism, Down syndrome and intellectual disabilities often cause children to be removed from the mainstream, and parents must be fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.

Learning Issues:

Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent both in working with their reluctant learners and with the schools that must provide the help these children need.

Mental Health Issues:

A child's problems with anxiety or depression can sneak up on parents; problems with attachment may smack them right in the face. Living with a child with mental health issues can put family members on a roller coaster of mood swings and crises and defiance. Parents have to find the right professionals to help, and make hard decisions about therapy, medications, and hospitalization. The consequences of missed clues and wrong guesses can be significant.

Common Concerns:

Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.

This doctor pioneered a way to treat stress in children, a startling source of future disease

This doctor pioneered a way to treat stress in children, a startling source of future disease

Nadine Burke Harris, a pediatrician in San Francisco, is advocating for all children to be screened for traumatic experiences, which, research shows, have a long-term impact on health. She is a Heinz Award winner 

Soon after Nadine Burke Harris opened a pediatrics clinic in a low-income neighborhood in San Francisco, she began grappling with the high rates of asthma and other illnesses that she was diagnosing in her patients. She wanted to understand why so many of the kids she saw were so sick.

“They would have chronic abdominal pain, headaches, attention deficit hyperactivity disorder, opposition defiant disorder,” she said. “It could be that all these different kids have all these diagnoses, or it could be that there is one thing at the root of this.”

She found an answer in a decade-old study that showed a strong link between chronic disease and traumatic experiences during childhood — things such as physical abuse or neglect, or living with a family member addicted to drugs or alcohol. She knew the children she saw lived with high “doses” of adversity, she said, and it made sense: Trauma was affecting their developing brains and also their developing bodies.

So she began to regard her practice in a whole new way. She started evaluating children not just for their medical histories, but also their social histories. And instead of treating only symptoms, she sought to help with the root causes of the stress that were making them sick.

She screened all the children at her clinic for traumatic experiences, and she built a new kind of medical center for those who screened positive. At the Center for Youth Wellness, which opened in 2011, children and their parents can see mental health workers, learn about mindfulness and other relaxation techniques, and meet with case managers who connect them with social services.

Harris’ novel approach to health care, and her personal story, are gaining national attention. Her work has been profiled in a best-selling book by Paul Tough, and a documentary film. Her health center has attracted major funders, including Google.org.

Last month, she spoke at the White House for a conference about trauma. And this week, she was honored in Pittsburgh with the Heinz Award for the Human Condition, one of six prizes given annually by the Heinz Foundation to “exceptional Americans, for their creativity and determination in finding solutions to critical issues.” The award comes with a $250,000 prize.

“I think we have reached a tipping point,” Harris said in an interview.

The American Academy of Pediatrics in 2014 announced the launch of a Center on Healthy, Resilient Children to help pediatricians identify children with toxic stress and help intervene. Local chapters are training pediatricians.

A screening tool for childhood trauma on the center’s web site has been downloaded 1,100 times. Harris’s goal is for every pediatrician to screen children for truama.

It is a tall ask for already-busy doctors, who see patients in 15 minute increments, to try to identify and treat a litany of pervasive and entrenched social problems. But Harris compares the research about the negative affects of childhood adversity to the discovery of germ theory or the science that showed second-hand smoke is harmful. The medical community evolved and responded.

“Does it seem like a difficult problem to solve? Yes. Does it seem harder than cancer? I don’t know,” she said. “Medicine and public health are all about solving hard problems.”

Harris, 40,  grew up in Palo Alto, California, the only girl in a family of five children. Her father is a biochemist and her mother is a nurse, and she set her sights early on becoming a doctor, she said. Harris was brought up with a strong cultural value of “we take care of each other,” she said, that her parents brought from their native Jamaica. “It’s a small island, and everyone has a cousin who is maybe not doing so hot. So it’s a real sense of shared destiny,” she said.

So while she pursued her medical degree at UC Davis, she was the student director of a clinic for the homeless in Sacramento. And when she finished her residency at Stanford University, she helped set up a practice in one of San Francisco’s most impoverished neighborhoods, Bayview-Hunters Point.

The research that transformed her career was a large-scale investigation undertaken by Kaiser Permanente and the Centers on Disease Control to see how chronic stress in childhood impacted health in life. It included 17,000 Kaiser patients who answered a questionnaire about their personal histories with “adverse childhood experiences,” otherwise known as ACES.

Questions included whether or not their parents were divorced, whether they experienced physical abuse, sexual abuse, or emotional neglect, and whether they grew up with family members who were mentally ill, or addicted to drugs, or alcohol.

The researchers, Vincent Felitti from Kaiser and Robert Anda of the CDC, found that adverse childhood experiences were incredibly common. Two-thirds of respondents reported at least one. One in six reported at least four.

And they documented an overwhelming correlation with poor health outcomes. Higher numbers of adverse experiences consistently yielded more health problems. Compared to people with no childhood trauma, people with 4 or more were twice as likely to be diagnosed with cancer or heart disease; 7 times as likely to be alcoholics; 6 times as likely to have depression; and 12 times as likely to have attempted suicide. People exposed to 6 or more traumatic events died 20 years sooner than those who had none.

Traumatic experiences led people to engage in more risky behaviors, such as intravenous drug use and early sexual activity. But even people without a history of high-risk behaviors had poor health outcomes.

Initial response to the findings was slow, partly because people did not know how to interpret the results, said Jane Stevens, publisher of  ACEs Too High, a news site about the impacts of childhood adversity.

But in the years since the study was published, a generation of scientists have begun to understand and explain the way stress shapes our bodies. Biomedical scientists and brain researchers have shown how “fight or flight” stress hormones, like adrenaline and cortisol, which flood the body when someone encounters danger, can cause lasting damage in the brain and body when a child is under prolonged or repeated and unmitigated stress, what is now commonly known as toxic stress.

The confluence of research is beginning to have an impact in many fields, Stevens said. Police departments are offering stress reduction classes. Educators are revising school discipline policies, and offering more mental health support in schools for children dealing with severe stress.

[To manage the stress of trauma, schools are teaching students how to relax]

As she pored through the research, Harris realized that exposure to childhood trauma increases the risk of contracting seven of the 10 leading causes of death in the United States.

“I went to medical school, I never heard about this,” Harris said. “When I did, I wanted to shout it from the rooftops.”

Jessica Weisz, a pediatrician at CCI Health and Wellness Services in Takoma Park, Md., said she heard Harris speak at a conference and was motivated by what she learned.

More than 30 percent of the children she sees suffer from asthma to some degree, she said, and research shows a link to childhood adversity. So this year, her office developed a screening tool for patients with asthma.

Because she mainly serves Latino clients, the tool includes some questions about immigration-related stressors, including whether a family member has been deported. Children who screen positive are referred to a team of licensed social workers on staff.

Like Weisz, other pediatricians are tailoring screening tools to reflect the populations they serve. Some pediatricians in the District are using questions developed in Philadelphia to gather information about urban stressors, such as witnessing violence or feeling unsafe in your neighborhood

So far, research shows six major strategies for mitigating stress: sleep, nutrition, exercise, mindfulness, mental health care, and healthy relationships. There is no breakthrough cure, Harris said.

Better treatments for stress are being developed. Research is particularly promising, Harris said, because the treatments can be used universally.

Her practice focuses on low-income families, who experience particularly high rates of chronic stress. But childhood adversity is prevalent nationwide. Respondents for the original ACES study were middle or upper-class, and nearly three quarters had college degrees; 69 percent were white.

“I think in upper income communities, it’s less talked about,” she said.

She pays close attention now to the affects of stress – even in smaller doses – on herself and her own family. She and her husband are raising four boys.

“I have to work to manage my own stress. I love my job, but it’s stressful,” she said. “It’s really important for me to take care of myself.”

Helping Paws for a Youngster with Cerebral Palsy

By Deborah J. Hall

Eight-year-old Cecily was born prematurely, and as a result, lives with Cerebral Palsy. She has trouble with balance, walking long distances, and picking up dropped items. Other than that, she is just like every other young girl. She likes to read, laugh, play with her brothers and sisters, help take care of new baby brother, and go to the park. However, she has never been able to be 'just like every other young girl' because she is not always accepted by her peers, and certainly not able to keep up with their play. Her family is wonderful, and her siblings supportive and inclusive. Still, she often yearned for her own 'special friend'. She knew, even at her young age, that she was 'different'. And she was painfully aware that the things that made her different also put up a barrier between her and other children her age. With a wisdom that comes only from 'being there', she also knew that those 'differences' were not going away. Still, she wished there was some way those differences could attract positive attention rather than negative.

In addition to the social and emotional challenges Cecily lives with, she also has to rely on others to help her with just about everything physical. Somebody needs to be close by at all times in case she falls. She needs someone to retrieve a forgotten crutch, or pick up her crayon if she drops it; she can't go into the bathroom by herself because her balance is so bad. It is an extra challenge for everyone, although they love her and love helping. And it was most especially hard on Cecily's own self-esteem. Even a six-year-old wants to be able to go to the bathroom by herself, or pick up her own crayon to keep coloring.

Cecily's parents were aware of dogs who helped people with disabilities but were unsure whether this would apply someone Cecily's age. In 2005, however, they discovered Summit Assistance Dogs in Anacortes, Washington. Summit doesn't have an age restriction and had already placed a dog with a four-year-old just a few years before. So Cecily applied, was accepted by Summit, and then began the wait.

Unfortunately, the demand for assistance dogs is so much greater than their supply that too often the wait is five years or more. For anyone that is a long time, but for a child it can seem like a lifetime. For months, as the family waited and hoped, they kept their spirits up by joking that a service dog for Cecily should be named 'Somebody' because often, when Cecily needed help, she yelled, "Somebody, I need my cane" or "Somebody, I dropped my crayon!"

Fortunately for Cecily, a little over a year after she applied the good news came. Tasha… a petite, gentle German Shepherd… who was nearing the end of her training as a mobility assistance dog was deemed by the Summit training staff as the quintessential 'child's dog'. In addition, Tasha had proven herself able and willing to learn how to do the specific tasks that Cecily needed. Needless to say, Cecily and her family were overjoyed when they got the call about Tasha, even if her name was not "Somebody"!

Hearing that Tasha was available was only the beginning, however. Learning to work with a service dog is a tough road to travel for anyone, but even more so for a child. And for the parents, it always results in more work. A dog is very much a child, forever, so adding 'another child' to a household already dealing with the challenges of caring for a child with disabilities is something that must be seriously contemplated. Cecily's family, however, was willing to put in the extra effort and work in the hopes that Cecily's life would be improved.

But challenges were there from the very first day of the training camp where Cecily would learn to work with Tasha. Tasha's trainer, Debbie Craig, remembers clearly what happened:

"I remember the first day of team training. Cecily walked in with her mother and grandmother, looking a little nervous. When we introduced her to Tasha, she hesitantly raised her hand to pet her. When we asked her to give Tasha a treat, she gagged as Tasha licked the treat away. The look of shock and dismay on her mom's face was apparent. They had been waiting so long for a dog, they were finally here, and now it seemed that Cecily may not be ready!"

But the next day things looked up: Cecily came in wearing her favorite cowboy hat, just for Tasha. And she brought a present for Tasha as well: a blue, stuffed dog. She put the little dog in Tasha's basket, and Tasha laid her head on it.

The relationship had begun.

Debbie Craig shares more:

"In their first week home, we received an email from Cecily's mom. She told me that for the first time in her life, Cecily went out to the back yard to play by herself, with Tasha. Tasha had provided that needed confidence."

Much more has happened since the serendipitous partnership of Cecily and Tasha. Much more that we hope to share here in the future. In my opinion, almost anything is possible when you put a dog and a child together. A recent report from Debbie truly personifies this:

"On my summer visit with Cecily and Tasha, Cecily's mom said we had to go to the park. Once there, I witnessed the most amazing thing. We went over to the slide. Cecily and Tasha went up the ramp. Tasha went down the slide, waited for Cecily to slide down, and then assisted her over to the ramp to do it again. Cecily's mom writes often to tell us of their blossoming relationship."

Cecily finally has her best friend and the other children are clamoring for more 'Tasha time'. They are amazed, impressed, and even a bit jealous when Tasha picks up Cecily's dropped crayon or brings her one of her crutches. After all, who has such a beautiful, loving, and talented dog as their best friend?

Deborah Hall is the co-author and publisher of The Rainbow Series: Dogs Who Help. Deborah explains, "This is an on-going series of nonfiction children's books, some sprinkled with a bit of fantasy here and there, about real dogs who help others in various ways. These books appeal to children from pre-school through fifth grade. Because they are nonfiction and illustrated with color photographs of the actual dogs in action, they educate as well as entertain. They encourage children to learn to read and love it, and all have at least one important life 'lesson' about diversity, acceptance, love, and animal stewardship. To order or for more information, please visit www.BunnyBudBooks.com" For more information about Summit Assistance Dogs, visit www.SummitDogs.org.

Six Types of Adaptive Equipment for Children with Cerebral Palsy

Six Types of Adaptive Equipment for Children with Cerebral Palsy

Updated on April 29, 2015

Many children with cerebral palsy and other physical impairments need adaptive equipment for therapeutic services or even day-to-day living. Such equipment not only allows a little more independence, it can also be vital for their well-being. As an example, it is important for children who cannot stand on their own to do some sort of weight-bearing exercise to help keep their bones strong. Two pieces of adaptive equipment that work well for weight-bearing are the gait trainer and the stander, which I will discuss in further detail along with other types of adaptive equipment.

Bath chair Photo by: Cari Bousfield

Bath or Shower Chair

Some children with cerebral palsy cannot sit up on their own. This can make even the simplest task of taking a bath somewhat challenging. Thankfully there is adaptive equipment such as bath chairs and shower chairs to enable those with physical challenges to bathe or shower.

Bath and shower chairs come in a variety of sizes and cost hundreds of dollars. The most important factor when choosing which bath or shower chair to purchase is the size of the child and how much support that child needs. Some chairs come with more support for the head and can come with adjustable straps and belts. It is helpful to discuss the best option with the child's physical or occupational therapist. As with most adaptive equipment, there are different sizes to choose from and can usually be adapted as the child grows.

Toileting Systems/Positioning Commodes

Some children with cerebral palsy may never have the ability to be potty-trained due to the fact they cannot control those particular muscles. For these children, when they grow out of diapers there are youth-sized briefs that can be worn for their toileting needs. These can cost around $70 for 90 pair of briefs.

If the child is able to become potty trained, there is adaptive equipment to help support them as they go to the bathroom. Again, in choosing this type of adaptive equipment, it must first be determined how much support the child needs. If a child cannot sit up on his/her own, the support needs to be in place for the child to sit up on the toilet. Some children may just need a special type of commode to place over the toilet. Some of these commodes can help with things like leg positioning. These adaptive commodes and toilet systems can cost anywhere from $100-$1,000.

There are also toilet systems that can be a combination of a toilet system and a bath/shower chair. These combo sets can be expensive and cost from $1,500 to over $4,000.

gait trainer Photo by: Cari Bousfield

Standers and Gait Trainers

Both standers and gait trainers are excellent ways for children with cerebral palsy who cannot stand on their own to do weight bearing. As mentioned previously, weight bearing allows the bones to remain strong. Standers and gait trainers also allow the child to be in a different position which can enable participation in different activities. With standers, the child can be stood completely upright or at a certain angle. Some standers come with the ability to move from a sitting position up to a standing position. These can be expensive and cost over $2,000. Regular standers can cost anywhere from $700-$2,000.

Gait trainers are not only important for weight bearing and for exercise in general, but also allow the child who cannot walk on his/her own to be able to take some steps. It is sort of like training the brain to send the right signal to the child's muscles to enable them to "walk." Gait trainers cost between $500-$2,000, depending on the size and support needed.

It is very important to discuss with the child's therapist the best type of stander and gait trainer to use at home. Equally important is knowing how to get your child in and out of the stander and the gait trainer, which can sometimes be very involved.

Modular Chair Photo by Cari Bousfield

Modular Chairs

Adaptive equipment such as modular or positioning chairs can come in handy especially for children in school. Some kids with cerebral palsy are in their wheelchairs for most of the day but modular chairs offer another kind of seating system. These modular chairs are at a lower level than typical wheelchairs and allow children to sit down at the same level as their peers. In their younger years, kids often sit at lower tables and a modular chair would allow the child to sit at a different height and sit up at the table.

Again, the chair must have the right amount of support for the child. Many modular chairs can be adapted as the child grows. These chairs can range in price from $200-$900.

The special tomato adaptive car seat |Source

Adaptive Car Seats

It is the law that children be properly restrained when traveling anywhere by car. What about kids with cerebral palsy and other special needs who cannot be supported in a regular car seat? What about those whose parents don't have an accessible van? An adaptive car seat is the answer.

When buying an adaptive car seat you must make sure that it meets or exceeds the US Federal Safety Standard MVSS 213 (Federal Motor Vehicle Safety Standard) where required. You can't just use any adaptive chair in the car; it must have a proper latching system so that the seat can be secure in the vehicle. Some adaptive car seats come so that footrests and headrests can be attached, although you may have to purchase those pieces separately. Also, some adaptive car seats can be used when traveling by airplane. Again, it has to meet the Federal Safety Standard.

Most adaptive car seats cost between $600-$2,000. As with some adaptive equipment, insurance nor Medicaid will cover this cost.

Adaptive Beds

Adaptive beds not only offer the sleeping child a comfortable place to sleep but also give parents peace of mind, knowing that their child is safe in bed and will not fall out or get his/her limbs caught in the railings.

Adaptive beds usually come in standard twin or full sizes which includes the mattress and box spring. Mattresses can come with features found in hospital beds, such as being waterproof. They're also designed to reduce pressure sores and come with an anti-bacterial covering. When purchasing an adaptive bed, make sure it meets or exceeds federal safety standards and the FDA seven zones of entrapment guidelines.

Some adaptive beds can be electronically adjusted so that the head/feet can be set at different angles for further comfort and a better sleeping position. Adaptive beds can range from $4,000 to over $5,000.

Stander Photo by Cari Bousfield

More About Adaptive Equipment

Adaptive equipment makes it easier for children with cerebral palsy to get all of their needs met, including bathing, sleeping, going to the bathroom, being able to stand or sit in different positions and being able to be transported by car.

Other adaptive equipment includes eating and drinking utensils. There are many different kinds and variations of utensils. There are adaptive plates, forks, knives, spoons, cups, straws, bowls, any and everything that a child might need to feed him/herself. If your child needs any of this type of adaptive equipment, it would be best to discuss all of the options available with the child's occupational therapist.

It is good to do your research before purchasing adaptive equipment. It is also good to discuss adaptive equipment issues with your child's physical/occupational therapist or any other professional who works with your special needs child. If the adaptive equipment is not supportive enough or does not help your child, it can cause huge frustrations and can even be dangerous for the child.

Adaptive equipment can be great for children with cerebral palsy as it allows them to be a little more independent and helps them take part in different activities. Adaptive equipment also helps these children get their everyday needs met, making them a happier, healthier child.

Parents rebuke lawmakers for cutting Medicaid money for therapy

Parents rebuke lawmakers for cutting Medicaid money for therapy

Families of disabled children packed a Capitol hearing room Thursday to rebuke lawmakers for cutting money for therapy services to some of the poorest and most vulnerable Texas children.

Last year, the Legislature approved $350 million in Medicaid payment cuts spread over two years to therapy providers, primarily those that serve children. A week before the cuts were to go into effect in July, the Texas Supreme Court temporarily blocked the cuts.

The case is still pending, but the temporary injunction didn’t apply to managed care organizations. They’ve passed the cuts on to providers, who have had to drop patients or shut their doors, according to child advocacy groups.

Tearful parents who lauded the benefits of therapy asked the Senate Finance Committee on Thursday to restore the money next legislative session.

Thursday was the first time parents and advocacy groups had the opportunity to provide comments on the cuts to lawmakers during a Capitol hearing since public testimony was never taken during the last legislative session.

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DEBORAH CANNON

Brad Phillips plays with his son, Simon, 3, as he and his wife, Melissa, left, listen to Jolene Sanders, of Easter ... Read More

“Look at the kids here who need all the therapy that they can get. They’re here because of the therapies that help us too, even though we are the parent,” said Austin resident Mayra Reyes, whose 3-year-old son was born with multiple health problems, including hydrocephaly, scoliosis and hyperthyroidism. He lost therapy services about a month ago.

Charles Smith, the state’s health and human services commissioner, told lawmakers that despite the temporary injunction, his agency — which is $1.3 billion in the hole — has already cut costs to Medicaid by $137 million. He promised that the agency will find more savings.

State Sen. Jane Nelson, R-Flower Mound, head of the finance committee, has justified the payment cuts to physical, occupational and speech therapists based on a study that showed that Texas reimbursed then at a higher rate than other states and commercial insurance programs.

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DEBORAH CANNON

Gerardo Reyes, 3, smiles at the crowd as state Sen. José Rodríguez, D-El Paso, speaks during a Capitol news conference Thursday ... Read More

“I’m trying to make sure … that we’re going to still take care of these children. On the other hand, I want to make sure we have the resources to take care of everybody … that we’re not paying more,” Nelson said Thursday.

Opponents of the cuts argued that the reduced rates would cut revenue by 18 percent to 28 percent and force physical, occupational and speech therapists to close their doors, interrupting vital services to an estimated 60,000 disabled Texas children.

The federal Centers for Medicaid and Medicare Services is also reviewing the state’s proposed rates. If it determines the cuts would reduce access to care, the agency can reject the state’s proposal.

Gary Jessee, who oversees Medicaid for the state’s health agency, said there hasn’t been a “mass exodus” of providers.

At least three home therapy provider groups in the Houston, Panhandle and Wichita Falls areas have stopped some or all services for Medicaid patients, according to the Texas Association for Home Care and Hospice.

Another three provider groups that provide therapy for children younger than 3 years old through early childhood intervention programs have stopped their programs altogether, according to Austin-based Any Baby Can, a nonprofit that provides parenting and child development resources.

Brian Schick, who said he is the only pediatric therapy provider in Comal County, told lawmakers that he plans to close in 60 days.

Kathy Clapsaddle, a Goliad-based therapist whose company also serves the Austin area, told lawmakers that the state can save money by ensuring high quality service, not by cutting payment rates.

“When we look at the health care research, rates account for 5 percent of waste while poor quality services account for 14 percent,” Clapsaddle said. “So we’re leaving a lot of money on the table.”

New managed care plan forces East Texas children to find new doctors

New managed care plan forces East Texas children to find new doctors

Video Link : http://www.cbs19.tv/news/local/new-managed-care-plan-forces-east-texas-children-to-find-new-doctors/314653469

Parents with disabled children currently on disability-related Medicaid may be forced to find a new physician before November. STAR kids is a new managed care program serving those who are 20 years old and younger and goes into effect on Nov. 1. 

 

The program, like those currently on disability-related Medicaid, will provide benefits like prescription drugs, preventative care, personal care, medical equipment and hospital care. 

 

Looking at a map of managed care service areas from the Texas Health and Human Services Commission, doctors can be found based on the county a family lives in.

 

For East Texans, that means driving all the way to Houston.

 

Michael and Tammy Wolven are the proud parents of 5-year-old Tiffany Wolven who was diagnosed with life-threatening genetic disorders. To avoid the long drive to Houston, they are moving to the Dallas area.

 

“We have three weeks to pack up, find a new physician and settle in,” Mrs. Wolven said. “We’re having to move to the DFW area.”

 

Mr. Wolven was just offered a job in Tyler and was forced to turn it down. He said anything to keep his daughter alive is worth the financial burden.

 

“She is my everything. Without her, I am nothing. This little girl is my whole world,” Mr. Wolven said. Uprooting their lives for the life of their little girl.

 

The Wolvens said they had no idea about the upcoming change until they received a packet in the mail one month ago.

 

CBS 19 reached out to local physicians for advice to parents who are forced to switch doctors. However, doctors were either unaware of the upcoming changes or said they were not informed on the topic well enough to comment.

 

Parents must have new plans picked out by Oct. 12.

 

For more information on the STAR Kids Managed Care Program, you can visit the Star Kids website.

Symptoms of Cerebral Palsy in an Infant By Barb Nefer

Symptoms of Cerebral Palsy in an Infant By Barb Nefer

Cerebral palsy is the umbrella term for a group of disorders related to brain development. They can affect a person's ability to move, speak, see, hear, think and learn. According to the National Institutes of Health, symptoms of this disorder can show up in infants as young as three months old. Being alert for the telltale symptoms in infants can lead to early diagnosis, which allows treatment to begin as soon as possible. This can help an affected baby develop to her fullest possible potential.

Delayed Milestones

  • Infants who have cerebral palsy may be delayed in reaching typical milestones as compared to other babies. For example, the Alfred duPont Hospital for Children says that infants should start reaching for toys between three and four months of age. They should be able to sit up by the time they are 6 or 7 months old. If an infant is unable to do these things, it may be a sign of cerebral palsy.

Abnormal Movement

  • Infants with cerebral palsy may make abnormal movements because this disorder can prevent them from controlling their muscles. This can be hard to distinguish when an infant is very young. However, as he develops, he should start gaining control of his movements. If he seems to be making involuntary movements or having tremors, the Alfred duPont Hospital for Children says it could mean he has cerebral palsy. The disorder may also keep him from making controlled movements when he tries, and the National Institutes of Health note that paralysis could occur as well.

Abnormal Reflexes

  • Infants with cerebral palsy may continue to have infantile reflex responses even after they should have outgrown them. Their reflexes may also be abnormal when compared to those of other infants. This can usually be discovered in a physical examination. If the baby is not responding normally, it could be an indicator of cerebral palsy.

Muscle Tone

  • The National Institutes of Health says that poor muscle tone in an infant can be a sign of cerebral palsy. The disorder often causes "floppy" muscles, particularly when the baby is at rest. This may be accompanied by an abnormally wide range of motion in the joints.

Feeding Problems

  • Infants with cerebral palsy may have problems feeding. The National Institutes of Health says this is because the condition can impair a baby's ability to suckle. Excessive drooling and difficulty swallowing can also be a symptom of cerebral palsy.

Warning

  • There are many conditions with symptoms similar to those of cerebral palsy that can lead to an incorrect diagnosis. According the the Alfred duPont Hospital for Children, these include spinal cord disorders and brain tumors. Infants may also show cerebral palsy symptoms as a result of head injuries, seizures, or accidental drug overdoses. When a baby is very young, it can be a challenge to rule out other causes and pinpoint cerebral palsy as the culprit.

References

  • Photo Credit Photo: sxc.hu (vierdrie)

Promoted By Zergnet

Why our children are so bored at school, cannot wait, get easily frustrated and have no real friends?

Why our children are so bored at school, cannot wait, get easily frustrated and have no real friends?

I am an occupational therapist with 10 years of experience working with children, parents, and teachers. I completely agree with this teacher’s message that our children are getting worse and worse in many aspects. I hear the same consistent message from every teacher I meet. Clearly, throughout my ten years as an Occupational Therapist, I have seen and continue to see a decline in kids’ social, emotional, and academic functioning, as well as a sharp increase in learning disabilities and other diagnoses.  

Today’s children come to school emotionally unavailable for learning, and there are many factors in our modern lifestyle that contribute to this. As we know, the brain is malleable. Through environment, we can make the brain “stronger” or make it “weaker”. I truly believe that, despite all our greatest intentions, we unfortunately remold our children’s brains in the wrong direction. Here is why:

1. Technology

Using technology as a “Free babysitting service” is, in fact, not free at all. The payment is waiting for you just around the corner.  We pay with our kids’ nervous systems, with their attention, and with their ability for delayed gratification. Compared to virtual reality, everyday life is boring. When kids come to the classroom, they are exposed to human voices and adequate visual stimulation as opposed to being bombarded with the graphic explosions and special effects that they are used to seeing on the screens. After hours of virtual reality, processing information in a classroom becomes increasingly challenging for our kids because their brains are getting used to the high levels of stimulation that video games provide. The inability to process lower levels of stimulation leaves kids vulnerable to academic challenges. Technology also disconnects us emotionally from our children and our families. Parental emotional availability is the main nutrient for child’s brain. Unfortunately, we are gradually depriving our children of that nutrient.

2. Kids get everything they want the moment they want

“I am Hungry!!” “In a sec I will stop at the drive thru” “I am Thirsty!” “Here is a vending machine.” “I am bored!” “Use my phone!”   The ability to delay gratification is one of the key factors for future success. We have the best intentions -- to make our children happy -- but unfortunately, we make them happy at the moment but miserable in the long term.  To be able to delay gratification means to be able to function under stress. Our children are gradually becoming less equipped to deal with even minor stressors, which eventually become huge obstacles to their success in life.

The inability to delay gratification is often seen in classrooms, malls, restaurants, and toy stores the moment the child hears “No” because parents have taught their child’s brain to get what it wants right away.

3. Kids rule the world

“My son doesn’t like vegetables.” “She doesn’t like going to bed early.” “He doesn’t like to eat breakfast.” “She doesn’t like toys, but she is very good at her iPad” “He doesn’t want to get dressed on his own.” “She is too lazy to eat on her own.” This is what I hear from parents all the time. Since when do children dictate to us how to parent them? If we leave it all up to them, all they are going to do is eat macaroni and cheese and bagels with cream cheese, watch TV, play on their tablets, and never go to bed. What good are we doing them by giving them what they WANT when we know that it is not GOOD for them? Without proper nutrition and a good night’s sleep, our kids come to school irritable, anxious, and inattentive.  In addition, we send them the wrong message.  They learn they can do what they want and not do what they don’t want. The concept of “need to do” is absent. Unfortunately, in order to achieve our goals in our lives, we have to do what’s necessary, which may not always be what we want to do.  For example, if a child wants to be an A student, he needs to study hard. If he wants to be a successful soccer player, he needs to practice every day. Our children know very well what they want, but have a very hard time doing what is necessary to achieve that goal. This results in unattainable goals and leaves the kids disappointed.

4. Endless Fun

We have created an artificial fun world for our children. There are no dull moments. The moment it becomes quiet, we run to entertain them again, because otherwise, we feel that we are not doing our parenting duty. We live in two separate worlds. They have their “fun“ world, and we have our “work” world. Why aren’t children helping us in the kitchen or with laundry? Why don’t they tidy up their toys? This is basic monotonous work that trains the brain to be workable and function under “boredom,” which is the same “muscle” that is required to be eventually teachable at school.  When they come to school and it is time for handwriting their answer is “I can’t. It is too hard. Too boring.” Why? Because the workable “muscle” is not getting trained through endless fun. It gets trained through work.

5. Limited social interaction

We are all busy, so we give our kids digital gadgets and make them “busy” too. Kids used to play outside, where, in unstructured natural environments, they learned and practiced their social skills.  Unfortunately, technology replaced the outdoor time.  Also, technology made the parents less available to socially interact with their kids. Obviously, our kids fall behind… the babysitting gadget is not equipped to help kids develop social skills. Most successful people have great social skills. This is the priority!

The brain is just like a muscle that is trainable and re-trainable. If you want your child to be able to bike, you teach him biking skills. If you want your child to be able to wait, you need to teach him patience.  If you want your child to be able to socialize, you need to teach him social skills. The same applies to all the other skills. There is no difference!

You can make a difference in your child’s life by training your child’s brain so that your child will successfully function on social, emotional, and academic levels. Here is how:

1. Limit technology, and re-connect with your kids emotionally

  • Surprise them with flowers, share a smile, tickle them, put a love note in their backpack or under their pillow, surprise them by taking them out for lunch on a school day, dance together, crawl together, have pillow fights
  • Have family dinners, board game nights (see the list of my favorite board games in my previous blog post), go biking, go to outdoor walks with a flashlight in the evening

2. Train delayed gratification

  • Make them wait!!! It is ok to have “I am bored“ time – this is the first step to creativity
  • Gradually increase the waiting time between “I want” and “I get”
  • Avoid technology use in cars and restaurants, and instead teach them waiting while talking and playing games
  • Limit constant snacking

3. Don’t be afraid to set the limits. Kids need limits to grow happy and healthy!!

  • Make a schedule for meal times, sleep times, technology time
  • Think of what is GOOD for them- not what they WANT/DON’T WANT. They are going to thank you for that later on in life. Parenting is a hard job. You need to be creative to make them do what is good for them because, most of the time, that is the exact opposite of what they want.
  • Kids need breakfast and nutritious food. They need to spend time outdoor and go to bed at a consistent time in order to come to school available for learning the next day!
  • Convert things that they don’t like doing/trying into fun, emotionally stimulating games

4. Teach your child to do monotonous work from early years as it is the foundation for future “workability”

  •  Folding laundry, tidying up toys, hanging clothes, unpacking groceries, setting the table, making lunch, unpacking their lunch box, making their bed
  • Be creative. Initially make it stimulating and fun so that their brain associates it with something positive.

5. Teach social skills

  • Teach them turn taking, sharing, losing/winning, compromising, complimenting others , using “please and thank you”

From my experience as an occupational therapist, children change the moment parents change their perspective on parenting.  Help your kids succeed in life by training and strengthening their brain sooner rather than later!

Rays of Light Dallas

https://youtu.be/nQqDlao1w9w

"Rays of Light is dedicated to nurturing children with special needs and their families in the Dallas metro area."

Who we are

Rays of Light, a Texas 501(c)(3) corporation, is dedicated to providing free, quality respite care to families with children with special needs, across the spectrum, in the Dallas metropolitan area. Together with our volunteers, we strive to lend support and relief to these families through our respite care program called Night Lights.

 

What we do

With our volunteers, nurses, and off-duty Dallas police office, Rays of Light offers parents a safe haven for their children to enjoy a special evening while they enjoy a night out.  The children have the opportunity to just be kids in a loving and nurturing environment. 

 

How to help

Sign up, Donate or Volunteer!  You can find the forms on this website to sign up your child, volunteer, or make an online donation. And follow us on Facebook!   

 

Night Lights Activities
Each Night Lights include live entertainment, arts & crafts, a movie theater setting, a game room, computer room, gym, and therapy dogs.  Every Friday evening starts with a magician, face painter, juggler, or a petting zoo!

Ten Myths About Autism and Sensory Integration

Ten Myths About Autism and Sensory Integration

Updated on June 8, 2016

This article (part 1 in a series of three) addresses common myths about Sensory Integration Disorder (SID) or Sensory Dysfunction (SD). The experiences, insights and opinions of over 150 autistic individuals were gathered by the author as the basis for this article.

Treat Sensory Issues Before Addressing Socialization and Communication? YES!

Of all the characteristics associated with autism, people on the spectrum consistently state that understanding and addressing how their bodies interpret sensations is one of the most beneficial things that neurotypicals (people without autism) can do to be supportive and develop insight into the world of autism.

Although people on the autism spectrum have been saying it for several years, treating sensory issues first is a relatively new concept for autism professionals who are typically accustomed to addressing socialization and communication difficulties before and sometimes to the exclusion of sensory problems.

Of particular concern for professionals is the lack of research indicating the effectiveness of sensory integration therapy for ASD's. While there is some emerging evidence that suggests deep tissue massage may be helpful1, more research is needed to give sensory dysfunction the attention it deserves and provide effective treatment options for individuals experiencing sensory dysfunction.

Recent changes to the Diagnostic and Statistical Manual's fifth edition (DSM V) by The American Psychiatric Association (APA) emphasize the degree to which an individual experiences restricted and repetitive behaviors associated with sensory integration (SI) challenges and may provide a framework to help professionals better address sensory issues if used appropriately.

What Exactly Is Sensory Dysfunction?

“Sensory dysfunction” is defined for our purposes as the body’s inability to interpret input through the senses (such as taste or smell) to a useful degree. In other words, sensory dysfunction occurs any time a person experiences too much or not enough feedback from their world.

“External stimuli” simply means anything that can affect any of the senses: a traffic light, an alarm clock, a hug, perfume, a squeaky wheel, bright wall hangings or a crowd of people.

Common Sensory Myths

Smell, sight, taste, touch and sound are not the only senses we have. | Source

Myth #1

Humans only have five senses: Taste, touch, sight, smell and sound.

Fact #1

In addition to taste, touch, sight, smell and sound there are two additional senses sometimes called “the hidden senses” or vestibular and proprioceptive senses.

“Vestibular” refers to our sense of balance that is regulated by the inner ear. It creates the awareness of space, gravity and movement as well as our head and body position in relation to the earth.

“Proprioceptive” refers to our awareness of what our body parts are doing and where they are in relation to the world around us. Our muscles, joints and ligaments provide the body with this information.

Some lights can create visual distortions and cause headaches for some people with SID. | Source

Imagine for a moment . . .

entering a room for the first time for an important job interview. You are “hit” with the noxious smell of something rotting in the refrigerator mixed with an overpowering perfume. You feel like retching. Bright lights shine directly into your eyes so you aren’t sure if there are two or three people sitting at the table in front of you.

When you finally feel your way through the disorienting light into a chair, someone asks you a question over the sound of a loud fan, You vaguely hear them say “This . . . highly sought . . . committee would. . . what qualifications . . . bring . . . candidates?” You really want this job but you have no idea what the question was and furthermore you are suddenly aware that you squinted your eyes, scrunched your nose up and pulled back abruptly when you entered the room in response to the strong odors and bright light. It was not the first impression you had hoped to make. You reply, “Well, the candidates for this position should be hard working, reliable and creative.”

A voice from across the table responds once again over the fan “Yes, but . . . above your competition?”

You are painfully aware that the noise of the fan and the queasy sensation in your stomach prevented you from hearing the question as it was stated: “This is a highly sought after position. The committee would like to know what qualifications you can bring to the job over the other candidates?” “What setsyou above your competition?”

Myth #2

Autistic people experience sight, sound, touch, taste, smell, balance and body awareness “just like everybody else”. When they complain about specific sensations, they are making them up to avoid something, seek attention or it’s just a psychological problem.

Fact #2

Sensory dysfunction is real.Individuals on the autism spectrum encounter significantly heightened sensory feedback to their bodies. This can cause confusion, disorientation and even pain in some cases. Autistics may also experience diminished sensations so they are unaffected by events that would cause a person to feel discomfort or pain such as a broken bone or an illness.

People who are oversensitive to specific sounds, touch, taste, sight or smells are referred to ashypersensitive. People who do not feel as much as the typical person are referred to as hyposensitive.

As a matter of fact, people on the spectrum frequently report that their sensory experiences and perceptions play a significant role inevery aspect of their lives including their ability to function in their environment and relate to other people.

This is a crucial point for neurotypicals to understand: When a person is hypersensitive and/or hyposensitive, this imbalance can affect every aspect of life including the ability to communicate and socialize effectively! Addressing sensory dysfunction can contribute to improvements in communication and socialization for some people.

Unfortunately, neurotypicals all too often dismiss sensory dysfunction, having never experienced it. Therefore, although it is one of the most important issues identified by people on the spectrum, it is also one of the least understood aspects of autism. The result is that the individual experiencing its difficulties is offered very little support to cope with their sensory challenges.

On a positive note, many autistic individuals possess an acute awareness of their bodies and any subtle changes that can be helpful when trying to determine healthy diet, medications or necessary treatments.

Some of these individuals utilize their heightened senses to their advantage in their careers and personal lives. Keep in mind that each person is unique and sensory issues may be very overwhelming for some individuals affect others only mildly.

Myth #3

People cannot be both hypersensitive and hyposensitive at the same time.

Fact #3

It is possible to have both hypersensitivity and hyposensitivity.

For example, it is possible to be hypersensitive to certain sounds such as a DVD rotating in a player, but not be affected by the sound of a firecracker exploding.

Myth #4

People who “self stim” (for example: rock back and forth, flick their fingers in front of their eyes, twitch their necks to the side, flap their hands) have no control over when and where they exhibit these behaviors and if they demonstrate control over these behaviors then they do not have autism.

Fact #4

Many individuals are able to regulate when and where they “self stim."

They have learned that certain behaviors are not considered socially acceptable and make special efforts to keep these behaviors out of sight in certain environments or around certain people.

An individual may be able to tolerate lights at work but not at home. | Source

Myth #5

Autistic people “self stim” to annoy or upset other people.

Fact #5

Autistics typically “self stim” to relieve anxiety or because it feels good.

Furthermore, it is important to understand that people on the spectrum often do not generalize new information and skills from one setting and situation to another. For example, just because a person has learned not to rock at school does not mean they will automatically transfer that knowledge to the grocery store or grandma’s house.

Myth #6

People’s sensory experiences remain constant regardless of time, location and circumstance. If they tolerate something at work or school, they should also be able to tolerate it at home or if they tolerated it last week, they should be able to tolerate it today.

Fact #6

People’s tolerance of sensory stimuli can vary greatly from one circumstance to another.

For example, many autistic teens and adults report that they are able to withstand certain sounds or lights while in public places such as school or work, but it requires so much energy and effort on their part to “hold it together” during this time that when they return home they must “shut down” as they have used up their ability to cope.

During this time they may experience a heightened sense of pain or discomfort to noises, touch, smells and or sights. It is as if they have used up all the hot water in the heater and must wait for the tank to reheat. An increase in rocking, hand flapping and other sensory behaviors may occur during these times as a way to relieve tension that has built up.

Sensory stimulation can be more difficult to tolerate during times of transition or change. For example: when job responsibilities change, a new car or home is purchased, death or birth of a family member, a new supervisor or teacher is introduced.

Furthermore, some individuals report having difficulty experiencing more than one sensation at a time. For example, the feeling of water in the shower may be tolerable in the dark, but overwhelming if the lights are on. Or eye contact may be relatively comfortable to achieve unless there is also background noise from other people talking.

ADHD medications can heighten symptoms of anxiety. | Source

Myth #7

Inattention and hyperactivity are best treated with Attention Deficit Hyperactivity (ADHD) medication.

Fact #7

Severe anxiety can often mimic symptoms of ADHD.

Anxiety is defined as excessive worry and distress over regular life events or events that are unlikely to happen. Thoughts of what might happen dominate the person’s day and interfere with their ability to enjoy life and accomplish daily tasks. Furthermore, individuals who have anxiety often report physical sensations such as racing heart, difficulty breathing, sweating, stomachaches, headaches, loss of appetite and trouble sleeping.

Stimulant medications used for ADHD can actually intensify anxiety and cause an increase in sensory seeking behaviors. In order for individuals on the spectrum to live comfortably and reach their potential, it is absolutely crucial that any issues of anxiety be addressed. Unfortunately, anxiety is frequently overlooked ormisdiagnosed as ADHD and the results can be profoundly debilitating.

While both individuals with OCD and HFA may engage in rituals, only those with autism will have social and communication deficits as well. | Source

Myth #8

If a person exhibits tendencies such as lining things up, having a specific routine or rituals like turning around before entering a room or washing hands, they must have obsessive-compulsive disorder (OCD).

Fact #8

Many autistics are misdiagnosed with OCD, especially when they exhibit milder communication and socialization challenges.

While it is true that autism and OCD can look very similar on the surface, the defining difference is that in addition to obsessive compulsive tendencies, all autistic individuals have difficulties with social communication as well as their obsessive compulsive tendencies. Individuals with OCD do not have remarkable deficits in their ability to socialize or communicate.

Unfortunately, autistic individuals who receive a diagnosis of OCD often do not get needed help with communication and socialization. Furthermore, even though OCD is an anxiety disorder, these individuals may not get help for their anxiety because the focus of treatment is often to eliminate sensory seeking behaviors rather than addressing the underlying anxiety that causes this behavior in the first place.

Squishy balls help some people focus and relieve anxiety | Source

Myth #9

It is not fair to let some students have wiggle seats, squishy balls, hats or other sensory devises because not all students are allowed to have them.

Fact #9

Sensory devices in the classroom or on the job are not toys.

They are necessary accommodations to help some students be successful in the same way that glasses help improve vision and hearing aids improve listening skills for some individuals. Sensory devices may help relieve anxiety and stress as well as improve focus and decrease the chances of a meltdown or mental overload.

Gastrointestinal problems can cause pain and increase autistic symptoms. | Source

Myth #10

People on the spectrum should be able to control their urinary urges and their bowels “like everybody else”.

Fact #10

Gastrointestinal (GI) issues are a major concern for autistics.

As a matter of fact, children with ASD's have a higher rate of GI issues than typical children and children with other developmental disabilities. This can present with extreme discomfort and even pain. Some individuals are unable to sense when they need to void and this can result in loss of both bladder and bowel control.

Some individuals on the spectrum also report that for some reason, voiding on themselves feels comforting and they may wet themselves to relieve anxiety. Potty training is a skill that is delayed and difficult to learn for some children on the spectrum.

Part 2 Will explore how SID affects autistic individuals and common mechanisms that they utilize to cope with it. Part 3 will provide readers with useful tips and suggestions to address the most common sensory issues.

References and Links

·         DSM V The New Diagnostic Criteria for Autism Spectrum Disorders
A PDF File Describing the recent changes to the Diagnostic and Statistical Manual for Autism along with possible benefits and problems associated with the changes.

·         Neurodiverse Universe: Learn about high functioning autism
What is high functioning autism? People with HFA, Asperger's, and PDD-NOS see the world and process it differently.

·         Phase 2 (2015) « National Autism Center
The National Standards Project addresses the need for evidence-based practice guidelines for ASD's. Findings indicate that more research is needed to address the concerns of individuals with sensory problems.

·         DSM IV Diagnostic Criteria for Autism
DSM Criteria for autism requires that an individual experience significant difficulty in their ability to socialize and communicate, in addition to stereotypical behaviors and restricted patterns of interest which can also be associated with OCD.

·         Medscape: Medscape Access
A good description of OCD provided in addition to the APA's criteria for this anxiety disorder. Note that there are no social or communication deficits included.

·         Adolescent & Adult SPD Checklist
A simple checklist for adolescents and adults to determine if SID is a problem.

Therapists want Medicaid cuts reevaluated

SAN ANTONIO- We are only two weeks away from a State budget cut that will affect thousands of children on Medicaid.

The Medicaid cuts have the potential to cut therapy sessions for thousands of children with disabilities in half or all together

It's another day of "play therapy" for Dina Delgado.

Using these toys during home therapy sessions for children with disabilities.

"These kids need help and that's the real issue," said Delgado.

But now Delgado says there's an even bigger issue that will affect thousands of disabled children in Texas.

"If cuts need to be made okay but these are really dramatic cuts," said Delgado.

On July 15th Texas will cut 350 million dollars in funding for therapy services for children with disabilities.

A cut state lawmakers voted for last year.

"A lot of these kids the services will completely stop. The cuts are so severe that they would not be eligible for therapy at all and all of a sudden families would be on their own," said State representative Diego Bernal.

Delgado says cutting therapy services just doesn't make any sense.

"That deficit is not going to close on its own its only going to get greater and bigger the older the kids get. The deficits, their special needs aren't just going to spontaneously, miraculously be removed," said Delgado.

Now she's hoping the funding cuts will be reevaluated so children can continue to get the amount of therapy services they need.

"It's our obligation to support these kids so they can have a fighting chance of becoming a functioning member of society," said Delgado.

More Lawmakers Call on Texas to Postpone Therapy Cuts

by Edgar Walters

June 30, 2016

•REFERENCE MATERIAL

House Republicans' Letter on Medicaid Cuts

PDF (218.4 KB) download

Senate Democrats' Letter on Medicaid Cuts

PDF (153.9 KB) download

Congressmen Doggett and Green's Letter on Medicaid Cuts

PDF (93.7 KB) download

 

With two weeks to go before Texas seeks to slash a program's funding that pays for speech, physical and occupational therapy for children with disabilities, therapy providers are announcing new support from state lawmakers in an effort to postpone the budget cuts.

It’s the latest development in a last-minute campaign to stop a $350 million cut to Medicaid, the federal-state insurer for the poor and disabled, that state lawmakers ordered in 2015 but has been tied up in court for nearly a year.

A lobby group for in-home therapy providers on Thursday touted written support from two Texas congressmen and about two dozen state lawmakers, bringing the group’s count up to 75 state lawmakers — 61 Democrats and 14 Republicans — who have written to health officials in the final days before the cuts are scheduled to take effect.

Texas lawmakers ordered the $350 million cut in federal and state Medicaid funding for pediatric therapists in their two-year budget passed in 2015, arguing that the state overpaid for those services. Many in-home therapy providers who treat children covered by Medicaid say the payment reduction would amount to a roughly 20 percent revenue cut that would force them out of business.

In the year since that budget was passed, dozens of lawmakers who voted for it have asked Texas officials to delay the cuts in order to study their projected effects more closely, for fear the move would jeopardize children’s access to health care.

 

The lawmakers' letters come amid an 11th-hour appeal by a group of in-home therapy providers and families of children with disabilities to the Texas Supreme Court for an emergency delay to the cuts’ implementation. They lost their lawsuit against the state in April when an appeals court found it lacked standing, but the group has appealed the ruling and hired a former justice on the state’s high court, Wallace Jefferson, for legal help.

Fourteen House Republicans, led by state Rep. John Zerwas of Richmond, wrote to the Texas Health and Human Services Commission on Thursday to ask the agency to study how the budget cuts will affect children’s ability to get therapy services.

They also asked the state to conduct a new study about how much Texas Medicaid is paying for those services compared with other public programs. The previous study the state commissioned has been extensively criticized by providers, and the lawmakers wrote that its “methodology used to collect the data [is] not known to the public.”

In addition, all 11 Democrats in the Texas Senate on Thursday wrote to the Obama administration asking it to intervene on the Medicaid cuts. Last week, all 50 Democrats in the Texas House wrote a similar letter.

Texas Congressmen Lloyd Doggett of Austin and Gene Green of Houston, both Democrats, also wrote to the U.S. Centers for Medicare and Medicaid Services, asking federal officials for an “expedited plan to assess the impact” of the cuts.

 

https://www.texastribune.org/2016/06/30/more-lawmakers-call-texas-postpone-therapy-cuts/

CANALES: BUDGET CUTS TO PROGRAMS SERVING CHILDREN WITH DISABILITIES IS CRUEL

Canales: Budget cuts to programs serving children with disabilities is cruel | Rio Grande Guardian

Jun 24, 2016 12:29 PM

Rachel Hammon, RN, BSN

Dear Pedi forum and Committee:

CANALES: BUDGET CUTS TO PROGRAMS SERVING CHILDREN WITH DISABILITIES IS CRUEL

 

On Memorial Day, I had the great honor of presenting a Congressional Gold Medal to a South Texas veteran, who was an Army medic during the Korean War, for his courageous actions in combat.

While he served on the front lines, he never left a fellow American behind, risking his life to defend, medically treat, and bring back wounded soldiers under hostile enemy fire.

There is nothing more American or Texan than the divine belief that we never turn away from those who need our help, especially those in most desperate need of protection - our children.

How can anyone see a child who needs life-saving help, and turn a blind eye to them?

However that is what is happening today in Texas, as a state program that provides therapy services to children with disabilities is about to lose $350 million in state and federal funding.

I have met with children and parents who will be hurt by this reduction in service, which will include payment cuts to home health agencies and providers for speech, physical and occupational therapies.

Recently, I talked to a father of a young autistic child who began receiving therapy just a year ago. This therapy helps children learn to walk, swallow their food, communicate with their parents and meet other developmental goals. Without these services, which are provided by the Texas Health and Human Services Commission, the state is essentially dooming the potential of countless Texas children.

In spring 2015, the Republican-led Texas Legislature ordered the $350 million budget cut in state and federal funds to these medically-necessary therapy services. This is despite the fact that the Texas Legislature has more than an $18 billion surplus in our current two-year state budget.

I voted against this $350 million budget cut - which includes $150 million in state money and will result in a loss of $200 million in federal funds. This will amount to about a 20 percent reduction of money some pediatric therapists will be paid by Medicaid, which is the state health insurance program.

These and other budget cuts by Republicans, who control the state government, are part of a dangerous trend by the GOP to keep taking away public money, which is available in the state treasury, from health care and public education.

In April, the 3rd Court of Appeals dismissed a challenge to these $350 million in cuts, reversing a lower court's decision. The state appeals court ruled that the Health and Human Services Commission acted within its rights to implement the cuts because Medicaid participants are not guaranteed access to specific providers. Lawyers who sued the state had argued that the reductions would affect 60,000 mentally ill and disabled Texas children who rely on Medicaid coverage.

There is hope now that the Center for Medicare and Medicaid Services will make an expedited decision to step in and save these vital services before cuts begin as early as July 15.

I will also work with my fellow lawmakers to restore the funding next spring, if the $350 million budget cut goes into effect.

I lay awake at night angry that the Republican-led Legislature has reached a place where they treat these children and their families so cold-heartedly. And as we work on solutions, we must pray that our state will come to its senses and protect our children.

I am reminded of a Bible verse I memorized as a child: "Truly I tell you, whatever you did not do for one of the least of these, you did not do for me" (Matthew 25:45).

This passage stands to remind all of us that we will be judged by how we treat the weakest and most helpless of our people.

 

�� About the author

Terry Canales is a legislator in the Texas House of Representatives. He represents District 40 in Hidalgo County, which includes portions of Edinburg, Elsa, Faysville, La Blanca, Linn, Lópezville, McAllen, Pharr, San Carlos and Weslaco. Canales may be reached at his district office in Edinburg at (956) 383-0860 or at the state Capitol in Austin at (512) 463-0426. Email: terry.canales@house.state.tx.us

20 Ways For Toddlers to Reach Maximum Effort

Tuesday, May 17, 2016

20 Ways For Toddlers to Reach Maximum Effort

Over and over again, I have seen parents complain about their toddlers not wanting to sit still or play with toys. Many lament the fact that they seem too busy to focus on much of anything. And, over and over again I remind them that toddlers are meant to move! 

 

We cannot underestimate the need to exert maximum effort for toddlers. They are working so hard to develop all their muscles that they often can't stop. Their inner drive to move just overpowers them. I still see this with Nora now, even though she's rapidly closing in on 2-years-old. She still needs opportunities to reach maximum effort and just do heavy work in general.

So, what are some ways that toddlers can exert maximum effort? Here are a few easy ones -- 

  1. Carrying around large purse or backpack
  2. Using large foam blocks
  3. Walking over pillows
  4. Move a bucket of water
  5. Pushing a loaded laundry basket
  6. Small weights 
  7. Carrying couch cushions or large pillows
  8. Catch with a super large ball 
  9. Pushing/Pulling a weighted wagon 
  10. Dumping a bucket of sand
  11. Scooping gravel
  12. Carrying a cardboard box
  13. Climbing a slide 
  14. Weighted Jugs
  15. Loading books in and out of basket or box
  16. Over-sized Pouring -- large watering can or ball drop 
  17. Climbing a Pickler Triangle 
  18. Carrying objects up stairs
  19. Using a pulley
  20. Loading larger rocks into container -- dump truck, bucket, wagon or wheel barrow