Join us in spirit on the way to Kilimanjaro!
As you may know, PJ and I are climbing Mt. Kilmanjaro this September in support of Beyond Limits!
Being 7,600 miles between Harford County, MD and Mount Kilimanjaro we hope to log that many miles with our training hikes, and the hikes, (or walks, runs, swims, bikes), of our supporters! Any Fitness Tracker (e.g. Fitbit) logging by our followers and donors counts too!
As of June 1st, we’ve all logged over 2,500 miles. We’ll need to step it up over the summer to reach 7,600!
A Facebook page has been created so you can share the miles that they’re walking/hiking/running; and add photos of the places you’re going! Please check it out and let us know how many miles you log each week.
While the senators were lecturing, Tera Myers was fuming.
Myers, the mother of an adult son with Down syndrome, had traveled to Washington to support Betsy DeVos, then the nominee for U.S. secretary of education, during her confirmation hearing. DeVos, a staunch supporter of school choice programs such as vouchers, faced pointed questioning from skeptical lawmakers at the January hearing. Several of them said that such options leave students with disabilities behind.
Myers, who lives in Mansfield, Ohio, said she felt the questions were deeply unfair. Not only had a voucher program helped Myers provide the best education for her son, she said, but the choice options had pushed school districts in her area to improve their offerings as well.
“No one, from my perspective, is saying, ‘I don’t like public school,’ ” Myers said. “I believe, just from my experience, the competition has created better public schools and better private schools.”
But in Port St. Lucie, Fla., Lynn Ambert watched the same hearing live on C-SPAN with far more skepticism. Her 9-year-old son is eligible for a voucher under Florida’s program, and she wanted to use it. However, no private school in her area will accept Ayden, who has autism and behavioral disabilities. Even the schools that advertised on their websites that they offered behavioral programs turned her away.
School choice options, such as charter schools, vouchers, and educational savings accounts, have powerful support in Washington right now, including in the White House. In a recently released budget blueprint, the Trump administration has called for $1.4 billion in school choice funding; DeVos has also indicated her approval of choice for students with disabilities.
But for such students, some of those options come with trade-offs, including the loss of specific protections under the four-decade-old Individuals with Disabilities Education Act.
While politicians debate how the federal government should back school choice, many states have forged their own paths by offering school choice programs aimed specifically at students with disabilities.
Many parents who accept those options say that the powers and protections that are outlined in the Individuals With Disabilities Education Act existed for them only in theory. Battling a school district over their child’s education was something they didn’t have the time, money, or knowledge to take on.
“Are you going to spend your time arguing with politics, or are you going to teach your child?” said Lynn McMurray, a Prescott, Ariz., mother who is home schooling three of her children using Arizona’s Empowerment Scholarship Account, which provides state funds to parents that they can use to pay for tuition, school supplies, online programs, or therapy.
But even parents who are happy with their school choice say they realize that they are benefiting both from having good private school options available to them and financial resources to supplement a voucher, if necessary.
Cynthia Greaux of Royal Palm Beach, Fla., uses Florida’s McKay Scholarship to pay part of the tuition costs for her two children, Tyler, 14 and Chloe, 8. Both have dyslexia. McKay is the oldest and largest voucher program in the country specifically for students with disabilities; more than 31,000 children in Florida use that program to pay for public or private school.
Greaux said she knows that not all parents can pay thousands of dollars for expensive neuropsychological assessments, as well as the balance of private school tuition for one child, let alone two.
She noted that her public school district offers a multitude of choices—from arts-focused programs to certificates for budding web designers. Why not, Greaux asked, a special program for children with dyslexia?
“I don’t feel like my kids’ needs were all that special,” she said. But her son, who was doing well in public school through one reading program, was switched to another that didn’t work for him.
“By putting the right services at the [public] schools, you could solve a lot of problems. … I find it mind-boggling that they can’t staff for such a common learning disability.”
The umbrella term “school choice” encompasses a variety of options, including magnet schools, public charter schools, and other programs that help pay for private school tuition or for services for home-schooling parents.
The view from the White House has been to support them all.
In a February address to a joint session of Congress, President Donald Trump urged lawmakers to pass a school choice bill aimed at “disadvantaged youth.”
“These families should be free to choose the public, private, charter, magnet, religious, or home school that is right for them,” Trump said.
The president did not specifically mention students with disabilities. But DeVos, whose seeming unfamiliarity with special education policy prompted stiff opposition from some disability advocates before her confirmation, has said that students in special education need a full spectrum of options.
“In far too many cases, the parents of students with disabilities in the public schools are currently not satisfied with the services their children are receiving,” DeVos wrote before her confirmation in response to one of more than 100 questions from Sen. Patty Murray of Washington state. Murray is the top Democrat on the Senate education committee.
“But too often, the only way that parents can obtain what is best for their child is through legal recourse. This can take months and sometimes years,” DeVos wrote. “Children don’t have years to wait for courts to decide.”
As long as students with disabilities choose to remain within the public school system, however, they have an array of protections. For example, a student’s individualized educational program, or IEP, must be drafted with parent input. It’s also harder to suspend long-term or expel a student with a disability than a student without one. Except in certain serious cases, schools must go through a process to determine if a student’s misbehavior is a manifestation of his or her disability.
For students with disabilities enrolled in private school, those rights do not exist. Nor do students in private school retain an individual right to special education services, though local districts are supposed to provide “equitable services” to private school students within district boundaries.
The loss of protections, along with a lack of viable private school options, could be reasons why private schools are used less often by students with disabilities who are covered under the IDEA. While about 10 percent of all school-aged children are enrolled in private school, just over 1 percent of students with disabilities covered under that law are placed by their parents in private school. (Charter schools are public schools, but independently run.)
But Myers said that the private school her son used, through the support of Ohio’s Jon Peterson Special Needs Scholarship Program, offered her far more control than the public school system did.
“I found due process to be a hindrance to me. I didn’t have the money for it, I didn’t have the time for it,” Myers said. “At the public school, I was at their mercy.”
In contrast, at her son’s private school, she was able to negotiate an appropriate education for her son. And if she didn’t like what the school was doing, she had the option not to pay the school and to find another educational option, she said.
Myers eventually took a position at her son’s private school, Mansfield Christian School, and worked with several nearby districts that had families considering the Peterson scholarship. Her once-rocky relationship with her local school district has improved dramatically, she said, and she has strong partnerships with others.
“Sometimes, it takes that alternative method to fix the system as it is,” she said.
For McMurray, in Arizona, her three youngest children have an array of special needs that just weren’t being met in a private or public school setting, both of which she tried, she said.
For example, her daughter Alicia, 17, has Kabuki syndrome, a rare disorder that causes developmental delays. In public school, “their expectations were way too low. They would say, ‘Well, what do you want us to do?’ I want you to challenge her. You having her sit at a table, that means she’s shut up, quiet, and out of your way, but you’re a teacher—teach her.”
In private school, the class sizes were low, but her children were still failing tests.
The public dollars, along with the one-on-one attention she is able to provide them as a home-schooling parent, has helped the children blossom, she said.
“I think every parent in the United States of America should have this choice,” McMurray said. At the same time, she added, “it’s not for everybody. You have to be disciplined. You can’t just say, maybe I’ll teach them today but not tomorrow. You have to keep with it.”
But for some parents, home schooling is not an option—and neither is private school, even with a voucher.
Ambert, the Port St. Lucie parent, had a difficult experience with her local district. Her son’s school was not equipped to deal with his behavioral challenges, restraining him so often that he came home from school with bruises and was eventually diagnosed with post-traumatic stress disorder. He is now receiving instruction at home from the public school district.
Ambert is currently trying to decide what the best options are for her son. An expanded voucher program, she said, is not what she needs. What she wants is a public school option that can properly educate children like her son, who have autism but can learn at grade level.
Even if she could find a private school, “who’s not to say they’re not going to kick him out within two weeks? … I just want somewhere that I know that he can’t be asked to leave,” Ambert said.
Did you know?
Show your support for inclusion and for autism spectrum disorders.
By Nexsen Pruet
March 22, 2017 will go down as a good day for parents, like me, who have a child in the public education system who has special needs. In a time when many of the exceptional children’s programs in this state and in this country seem to be under constant attack, the Supreme Court has given us some new ammunition in the form of (i) a new and higher standard for the level of education that our children are required to be provided with and (ii) an acknowledgment from the highest judicial figure in the land in a Supreme Court opinion that affirms the presence and importance of the role that parents must play in the formation of their children’s IEP’s [Individualized Education Plan].
In the case of Endrew F. v. Douglas County Schools (March 22, 2016), Chief Justice John Roberts issued a unanimous decision that held that “[t]o meet its substantive obligation under the IDEA [Individuals with Disabilities Education Act], a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” Recognizing that all children with special needs are not the same, the Court bifurcated this standard in part by ruling:
– “For a child fully integrated in a regular classroom, an IEP typically should be ‘reasonably calculated to enable the child to achieve passing marks and advance from grade to grade.'”
– For children for whom advancement from grade to grade is “not a reasonable prospect,” an IEP “must be appropriately ambitious in light of his circumstances.”
The standard adopted by the U.S. Supreme Court in Endrew represents a drastic improvement over the standard advanced by the Douglas County district in the Endrew case, which is also the standard that most other school districts have applied since the implementation of IDEA. Indeed, the standard which the U.S. Supreme Court refused to adopt in Endrew, which was that a school district need only provide an “educational benefit [that is] merely … more than de minimis,” will now hopefully go by the wayside. Chief Justice Roberts certainly disregarded this proposed standard with aplomb when he ruled that “a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all. For children with disabilities receiving instruction that aims so low would be tantamount to ‘sitting idly…awaiting the time when they were old enough to ‘drop out.'”
Some facts from the Endrew case help illustrate the importance of this ruling. Endrew is a child who, like my son, was diagnosed with autism at an early age. Endrew attended public school in Douglas County from preschool through fourth grade. Endrew showed numerous strengths and was described as “being a humorous child with a ‘sweet disposition’ who ‘show[ed] concern  for friends.” Despite these strengths, Endrew also “exhibited multiple behaviors that inhibited his ability to access learning in the classroom” such as screaming in class, climbing over furniture and other students, and running away from school. When Endrew’s parents met with the Douglas County officials for Endrew’s fifth grade IEP meeting, Endrew’s parents were provided with an IEP that was “pretty much the same as his past ones [IEPs]” even though the parents had asked for a “thorough overhaul” of Endrew’s IEP as a result of Endrew’s behavioral problems.
At this point, Endrew’s parent’s removed Endrew from the public schools and enrolled Endrew at Firefly Autism House, a private school. Firefly developed a “behavioral intervention plan” for Endrew “that identified Endrew’s most problematic behavior and set out particular strategies for addressing them.” Firefly also “added heft to Endrew’s academic goals.” With this plan and these strategies in place, Endrew’s behavior improved and he started to make academic progress that he hadn’t been making in public school.
Six months after enrolling at Firefly, Endrew’s parent’s met with Douglas County officials again. Presumably this meeting was held for the purpose of re-enrolling Endrew. In the meeting the Douglas County officials presented another IEP. However, this IEP “did not differ meaningfully” from the plan that Douglas County had presented before even though there was clear evidence that the program implemented by Firefly were working.
With this disappointment in mind, Endrew’s parents filed a complaint seeking reimbursement for Endrew’s tuition at Firefly under the provisions of IDEA. During the course of the litigation, lower court’s acknowledged that the past IEPs “did not reveal immense education growth” but determined that Endrew was not entitled to relief because Endrew’s “IEP objectives were ‘sufficient to show a pattern of, at the least, minimal progress.”
In reaching his decision overruling the lower courts, Chief Justice Roberts undertook a thorough analysis of the United States Supreme Court’s prior ruling in Bd. of Ed. of Hendrick Hudson Central School Dist., Westchester Cty. v. Rowley, 458 US 176. Douglas County argued intensely that the Rowley decision supported the “de minimis” standard that it advanced. However, Justice Roberts disagreed. Justice Roberts stressed that the Court in Rowley actually had “charted a middle path” and limited its decision to just the facts of the case that was before it in Rowley. As such, Chief Justice Robert determined that the Rowley court declined “to establish any one test for determining the adequacy of educational benefits conferred upon all children covered by the Act [IDEA].”
After analyzing and limiting Rowley, Chief Justice Roberts went about setting the new standard that will now be applicable, which, as aforementioned, is that for a school district “[t]o meet its substantive obligation under IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” Importantly, Chief Justice Roberts noted the importance of parents playing a role in this new standard when he concluded that this new standard will require a “prospective judgment by school officials” that “will be informed not only by the expertise of school officials, but also by the input of the child’s parents and guardians.” The addition of this language should provide great relief and ammunition to the many parents who feel like they have been frozen out of the IEP process by their districts.
In supporting his standard, Chief Justice Roberts concluded very simply that “[t]he IEP must aim to enable the child to make progress.” After all, Chief Justice Roberts rationalized that “[a] substantive standard not focused on student progress would do little to remedy the pervasive and tragic academic stagnation that prompted Congress to act.”
Interestingly, Chief Justice Roberts seems to have embedded in his opinion two extra warnings to school districts that they should take this new standard seriously and not try to take advantage of it …
For the first time in a decade, the classic children’s television show Sesame Street will introduce a new Muppet on the air.
Her name is Julia. She’s a shy and winsome 4-year-old, with striking red hair and green eyes. Julia likes to paint and pick flowers. When Julia speaks, she often echoes what she’s just heard her friends Abby and Elmo say. Julia has autism.
“There’s so many people that have given her what she is. I’m just hoping to bring her the heart,” says Stacy Gordon, the veteran puppeteer selected to play the part.
Presenting Julia to the gang requires a bit more explanation of her differences and hidden talents for the other Muppets — and their young viewers. As Abby Cadabby (the 3-year-old fairy played by Leslie Carrara-Rudolph) explained during NPR’s recent visit to the set in the Astoria neighborhood of Queens, N.Y., it can be hard to get Julia’s attention. Big Bird had to repeat himself to get her to listen, for example. And she sees things where others don’t.
“That’s just Julia being Julia,” Abby said.
The role of Julia has a personal dimension for Gordon: She says she used do therapeutic work for people with autism. And Gordon says her son is on the autism spectrum, too. She believes the show will be a great resource — for students with the disorder and for their playmates.
“Man, I really wish that kids in my son’s class had grown up with a Sesame Street that had modeling [of] the behavior of inclusion of characters with autism,” Gordon said.
Jeanette Betancourt, senior vice president for U.S. social impact at parent company Sesame Workshop, has been helping plot the development of Julia for about three years. Sesame Workshop is a not-for-profit media company and an educational outfit that conducts its own research.
Betancourt says the introduction of Julia’s character is a natural outcropping from other initiatives Sesame Workshop has done, pointing to programs for children with a parent who is incarcerated and for military families enduring deployments.
“Basically, in terms of vulnerable families, we’re looking at families who may have particular stressors in their lives that are impacting their young children,” Betancourt says, “whether it’s economic or social emotional stresses or differences that they’re handling at the time.”
Parents of children with autism told officials at Sesame how important the show was for their kids. According to the U.S. Centers for Disease Control, one in 68 American children have autism.
Julia started last year as a character in Sesame’s books and digital offerings. Sesame decided on a two-fold mission for the related campaign “See Amazing in All Children,” to give children with autism and their families someone to identify with — and those that don’t a window into their world. The materials appear on a dedicated site.
Sherrie Westin, an executive vice president at Sesame Workshop who oversaw the initiative, said the campaign quickly struck a chord.
“One of my favorite stories is a mother who said that she used the book to explain to her child that she had autism like Julia,” Westin said, shaking her head slightly as she teared up. “This became the tool for her to have a conversation with her 5-year-old daughter.”
“And you’ll love this. At the end her daughter said, ‘So I’m amazing too, right?’ ”
The surfacing of a new permanent Sesame character is rare. Westin said it’s the next logical step.
“We realized if we brought her to life appearing in Sesame Street on air as well, she would have even more impact [and] be able to reach even more children,” Westin said.
Findings from a new autism study suggest that changes in the brain in early infancy may predict diagnosis at age 2 in children who have higher odds of autism because an older sibling is autistic. The study, published in Nature, doesn’t tell us anything about causation, but it does incidentally confirm that the MMR vaccine has nothing to do with autism.
The researchers imaged the brains of children at “high risk” for autism because of an older sibling’s diagnosis and the brains of children who had no family history of autism. They performed MRIs when the children were ages 6, 12 and 24 months and administered a test at age 24 months that is diagnostic of autism and another that assesses social skills.
Some of the measures they took with MRI included total brain volume, thickness of the cortex (the outer part of the brain) and surface area of the cortex. They then compared changes in these measures over time with outcomes like severity score on the autism diagnostic scale and scores on the social measures. Part of their analysis involved using an algorithm to take the imaging information and predict which children would later be diagnosed with autism.
The results suggest that rapid cortical surface growth from ages 6 to 12 months was a predecessor of a “dramatic” increase in brain volume at age 12 to 24 months in high-risk children diagnosed with autism at age 24 months. The machine learning algorithm predicted this diagnosis in 81% of the high-risk children who were ultimately diagnosed with autism. The machine also gave false positive result for four children.
The numbers in some of the analyses were 106 high-risk infants and 42 low-risk, although the original group consisted of 117 with no family autism history, 248 with an autistic sibling but not diagnosed with autism themselves and 70 with an autistic sibling who also were diagnosed with autism. The brain growth analysis included only 15 of the 70 high-risk children diagnosed with autism because they were the only participants who had MRI at all three timepoints (ages 6, 12 and 24 months).
Children who have an autistic sibling have increased odds of being autistic themselves, up to 1 in 5 compared to the current 1 in 68 (CDC) for the general population. Here, 70 out of 318 of the group with autistic siblings were diagnosed with autism whereas only three of the group with no family history met criteria under an older version of the DSM (Diagnostic and Statistical Manual of Mental Health Disorders). That’s 2.6% without a family history vs. 22% in the higher-odds group.
The study population was not large, especially considering the reductions in numbers for some analyses, and the authors caution that replication will be needed before anything along these lines could be used in practice for children with higher autism odds. Also, this work would be applicable only to children who are already known to have increased odds because of having an autistic sibling.
You asked to have your child evaluated for special education services. Now it’s time for the IEP meeting, but you’re not sure what to expect. What’s in an IEP? How can you prepare for the meeting?
What is an IEP?
The IEP, Individualized Education Program, is a written document that’s developed for each public school child who is eligible for special education. The IEP is created through a team effort and reviewed at least once a year.
Before an IEP can be written, your child must be eligible for special education. By federal law, a multidisciplinary team must determine that (1) she’s a child with a disability and (2) she requires special education and related services to benefit from the general education program.
The Individuals with Disabilities Education Act (IDEA), a federal law, requires certain information to be included in the IEP but doesn’t specify how the IEP should look. Because states and local school systems may include additional information, forms differ from state to state and may vary between school systems within a state.
IEP team members
The members of the multidisciplinary team who write your child’s IEP include:
- You, the parents, who have valuable insights and information about his strengths and needs and ideas for enhancing his education
- General education teacher(s) who can share information about classroom expectations and your child’s performance
- A special education teacher who has training and experience in educating children with disabilities and in working with other educators to plan accommodations
- An individual who can interpret the results of your child’s evaluation and use results to help plan an appropriate instructional program
- A representative of the school system who knows about special education services and has the authority to commit resources
- Individuals with knowledge or special expertise about your child that are invited by you and/or the school district
- Representatives from transition services agencies, when such services are being discussed
- Your child, when appropriate, and whenever transition is discussed
Mr. Shumway is a kindred spirit!
OCT 23, 2015
As a young man growing up with autism, Troy Shumway never dreamed he’d have the opportunity to go to college like his older siblings.
But the 20-year-old Carmel Valley man is now halfway through an adapted college program in Utah and he’s gone to the ends of the earth to make that same dream come true for another student next year.
This past June, Troy climbed Africa’s Mt. Kilimanjaro as part of a yearlong fundraising campaign to cover a future student’s tuition at Aggies Elevated. The two-year certificate program at Utah State University was launched in 2014 for students with autism, Down syndrome and other intellectual and physical disabilities.
On Saturday morning, Troy will talk about his climb and his college experience at a free open house event at the Del Mar Hilton Hotel. He said he loves attending college and he’s proud of his Kilimanjaro climb.
“This program has really helped me learn and grow from my comfort zone and my shell,” he said. “I think it’s important for kids to go to college and have the same experience that I had.”
Troy is the fifth of six children born to Dr. Robert and Kathy Shumway of Carmel Valley. Kathy said that when Troy was diagnosed with autism at age 3, he was nonverbal. He has since become very talkative, but his academic level stalled around fifth or sixth grade and he has behavioral issues, tics, rocks back and forth and has difficulty making eye contact.
While Troy was attending Torrey Pines High, Kathy said she and her husband looked for programs that could offer him a structured college experience. There aren’t many, and some of them are very expensive. Then they discovered Aggies Elevated, a small pilot project modeled after the Pathway program at UCLA.
Special-needs students live in dorms, take classes, work internships and interact with other students on the Utah State campus, while learning life, health, career and social skills, money management and self-reliance. The small program has just 11 students this year but will expand next year thanks to a federal grant.
Sarah Bodily, program director for Aggies Elevated, said students gradually learn to cope with real-world challenges like homework, research papers and time management, which prepares them for a productive and independent life.
“They walk around campus with confidence after being here for over a year. It’s their campus and they are integrated among it. They’ve joined clubs and participated in events all through the community,” Bodily said.
Troy said college is both stressful and fun and his favorite part is his internship job at the campus health and fitness center. He hopes one day to live on his own and pursue his dream of writing screenplays and working in the film industry.
The idea for the tuition campaign was dreamed up last winter by Troy’s father, Robert, a triathlete and mountain climber. The motto for Aggies Elevated is “climb higher,” so they decided to turn a planned family vacation in Africa into a mountain-climbing fundraiser.
The magnetic decals, made by Mamaroneck-based shop The Cruisers Division, are customized to each department and city with a multi-colored puzzle piece design. The puzzle piece is the primary symbol for autism.
Each magnet is to be placed over the traditional badge symbol during the month of April, which is Autism Awareness Month.
Greco started the movement by creating a Facebook page on Feb. 9, through which he challenged the Pelham, Ossining and Yonkers police departments to take part. He asked every accepting agency to “pay it forward” by challenging three more departments.
Eastchester police Lt. Jeffrey Hunter spearheaded the campaign after his department was challenged by another agency. He said he jumped on board because his department has a strong relationship with the school district’s Special Education Parent Teacher Association, and this was a way to educate both the public and his officers about dealing with special needs individuals.
“We have, in the past, educated our officers about dealing with individuals with special needs — autism especially — and how some of the behaviors that are exhibited sometimes may be misinterpreted,” Hunter said. “We have had dealings with autistic individuals in the past and we are encouraging more awareness through the law enforcement profession that there are different ways that you may have to deal with individuals with different needs.”