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Click here to download PDF What:If your child has epilepsy, you know it can affect every aspect of your and your child’s life. This educational series is offered to you or anyone interested as a time to learn about epilepsy, ask questions, and share your experience with others in the same situation. Please join us. When:Nov. 29, 2011Jan. 24, 2012Mar. 27, 2012May 22, 2012All sessions are at 7:00 PM on TuesdaysWhere:St. Vincent HealthcareMansfield Health Education Center1145 North 30th, Located in the Lower Level of theYellowstone Medical Building WestContact:St. Vincent University at 406-237-ED4U (406-237-3348) or svhu@svh-mt.org

Creating a Community and Solving Challenges 1. You, A Caregiver for a Child with Autism 2. Autism and the Family 3. Grandparents and the Extended Family 4. Safety at Home 5. Building Your Faith Community 6. Creating a Community in Your Neighborhood 7. Creating a Community at School 8. Evaluating Interventions, Treatments and Resources 9. Technology 10. Your Child’s Health Care Providers and Medical Home

Schraf is a child life specialist, a type of health care provider whose job is to help sick children and their families navigate difficult medical situations emotionally and psychologically while in the hospital. They do it largely through play—the basis of how a child learns and grows.

Long thought to be caused by problems at birth, researchers now say that in most cases cerebral palsy may actually originate in a person’s genes much like other developmental disabilities. The finding, reported online in the journal The Lancet Neurology in January, comes as cerebral palsy rates have remained steady for over 40 years despite marked progress in medical care during and after birth, the researchers note.

Children with developmental disabilities who have severe behavior issues respond better to medication if it is paired with training for their parents, researchers say.

When, at age 3, my son received a medical diagnosis of autism, my husband and I received a list of intensive treatments that we needed to initiate as quickly as possible and a pep talk saying that if we did these things there was a good chance we could “fix him.” As a mother, I was terrified. Images of Rain Man filled my mind, quickly followed by painful memories of security officers trying to restrain my beloved 350-pound adult autistic patient during a violent meltdown. As a physician and researcher, I did what I was best trained to do—I quickly took charge of the situation, scheduled consultations with every type of therapist in the city, and immersed myself in the autism literature. But I soon realized that expert opinions clashed greatly, there were no easy answers, and the evidence in support of the various therapies was extremely limited.

Summer vacation will be here soon. When planning a vacation with a person who has special needs, accessibility is the name of the game: wheelchair accessibility, accessibility to medical needs, a positive sensory environment, accessibility to old interests and new experiences. Every destination on this list welcomes and accommodates visitors with special needs.  You’ve probably heard of some of these places before, but others may get you thinking about vacations in a whole new way.

If you’re like me, your child has so many medical appointments it may be hard to keep up with routine or preventive care.  But family caregivers need to know how essential dental care is for their children.  Parents may think, oh it’s just teeth, and have so many more urgent things to do.  But oral health is just as important as other physical health.

“There will always be someone worse off and better off than you. Always.”I hear this repeated whenever we take our daughter with cerebral palsy to medical appointments, and we see children who are bald after grueling rounds of chemotherapy or families dealing with children’s emotional and behavioral issues.I count my blessings and say to myself, “Self, you are lucky.” I look at my daughter happily tooling around in her wheelchair the color and sheen of nail polish while I fight the urge to run from the repetitive questions and forms in triplicate to skedaddle in the direction of the nearest Krispy Kreme.There are times I forget how the world sees my daughter: a cute girl who walks with a strange gait, who most often is drooling and who uses a communication device to speak. I forget that she resembles a broken marionette that has snipped her strings and says so much with a smile. What I see is a strong, capable, intelligent, goofy and amazing child who lightens hearts and communities that are blessed to know her.

On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled. Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day. Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy. It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

A Vanderbilt research program that trains community pediatricians to diagnose autism within their individual practices may lead to more effective treatment of the disorder that now affects an estimated one in 88 children. Vanderbilt University Medical Center researchers released today in the journal Autism the results of a three-year study that evaluated the effectiveness of a training program designed to enhance autism spectrum disorder (ASD) identification and assessment within community pediatric settings across Tennessee.

Today, as part of the Obama administration’s work to make our health care system more transparent, affordable, and accountable, Health and Human Services (HHS) Secretary Kathleen Sebelius announced the release of new, privacy-protected data on services and procedures provided to Medicare beneficiaries by physicians and other health care professionals. The new data also show payment and submitted charges, or bills, for those services and procedures by provider.“Currently, consumers have limited information about how physicians and other health care professionals practice medicine,” said Secretary Sebelius “This data will help fill that gap by offering insight into the Medicare portion of a physician’s practice. The data released today afford researchers, policymakers and the public a new window into health care spending and physician practice patterns.”

Federal officials are taking steps to clarify new requirements surrounding Medicaid coverage of autism treatments. Over the summer, the Centers for Medicare and Medicaid Services issued a bulletin to states indicating that Medicaid programs across the country must provide “medically necessary diagnostic and treatment services” to beneficiaries with autism under age 21. Now, the agency is providing new details about the mandate.

May 21, 2010 — Results from a new randomized trial show that children with Tourette's syndrome and chronic tic disorders have greater improvement in tics and tic-related impairment with comprehensive behavioral intervention than with supportive therapy and education. "Historically, Tourette's syndrome has been treated with antipsychotic medications, which reduce tics but are associated with side effects that often limit their usefulness in children," lead author John Piacentini, PhD, from the University of California, Los Angeles, said in a statement. "So the development of an effective nonmedication treatment for children with this disorder is a major therapeutic advance."

Epilepsy Foundation Northwest Camp Discovery August 31–September 3 The Epilepsy Foundation Northwest’s Camp Discovery, located at Camp Fire USA’s Camp Killoqua in Stanwood, Wash. (Snohomish County), is a 4-day, 3-night camp for children and teenagers, ages 7–17, with epilepsy. It’s a great opportunity for kids to experience the fun of camp activities—swimming, fishing, sports, hiking and more—all designed to be accessible and adapted to campers’ individual needs and abilities, all in a safe, medically monitored setting. The camp is free to kids with epilepsy and costs $150 for siblings. Scholarships are available for qualified individuals, based on availability and financial need. Contact Brent Herrmann at 206-547-4551, or register at www.epilepsynw.org.

MCHA will begin accepting applications for this new option on July 1, 2010.  The first date that coverage can be effective is August 1, 2010.  Please keep in mind that applications received on the 1st through the 15th of the month may have an effective date of the first of the following month.  Applications received the 16th through 31st may have an effective date of the 15th of the following month.  To qualify, an individual must be a citizen or national of the United States, or lawfully present, must be a Montana resident, must have a preexisting medical condition and must have been uninsured for at least 6 months before applying for the federal program. Enrollment in the federal MAC Plan is limited and on a first-come basis. 

Seven-year-old Alex Rowe, who has a rare bleeding disorder, soon will have private health insurance again.  He is among more than 5 million Americans under the age of 19 with a pre-existing medical condition who cannot be denied coverage by insurance companies beginning as early as September under a key provision of the health care reform law. Covering consumers with pre-existing health problems has long been a point of contention and figured prominently in the national health reform debate.