Monday, May 18, 2015

Action Needed: Speak Up! CA Council on Developmental Disabilities Wants to Know What You Thin About the System of Services

Please share this with everyone you know who has an interest in the future of our families impacted by Developmental Disabilities. We can change the future! 

The California State Council on Developmental Disabilities wants to know what you think about the system of services and supports for people with intellectual/developmental disabilities throughout the state. You may tell us what you think, what you have experienced, or what you need, just by 1) clicking on the survey (one in English and one in Spanish) links below and 2) taking a few moments to fill out our electronic survey.

The State Council will be using the valuable information from this survey to write its next 5-year State Plan. Your knowledge, experience, and thoughts matter very much to us. Thank you for being a strong partner in support of people with I/DD in California.

Tuesday, May 12, 2015

Disney Hit With Another Autistic Kids Lawsuit...My Plea to Disney...can't we all just get along!

Disney Hit With Another Autistic Kids Lawsuit Over Theme Parks

Sad The Happiest Place on Earth Can't work this out. Nick at
Disneyland. in 2011
Before you read the news story below...I just want to say; it seems to me this is not a battle worth fighting, for anyone.  Families are unhappy,  advocacy rights groups outraged, children are disappointed and I can't see Disney's upside to it's current policies.  Please wake up Disney decision makers... this battle does nothing for your "Happiest Place on Earth Brand".  It flies in the face off all that the Disney name means to families, including mine. No matter how "Right" your position is, or you believe your position to be, children with disabilities are the underdog, if not the victim here.   

It beg's the question.."What's more harmful to Disney having your brand constantly in the news with these negative stories - which is like watching Disney's positive image being nibbled to death by ducks - or finding a solution that makes families and disability organizations happy and bumps up your image in the process"?  

I also wonder if a solution would have been cheaper than the legal fees Disney must have racked up by now, and the battle is not over.  That said, here's my plea to Disney.  Please work it out! Let's free up our courts and bring the world's attention back to all things amazing about the Disney Brand and it's parks!!!!

Thanks...another mom
Disney Hit With Another Autistic Kids Lawsuit

With legal action already underway in Florida for violations of the Americans With Disabilities Act, today saw Walt Disney Parks and Resorts sued in Los Angeles Superior Court by more than a dozen families with autistic children. Like the lawsuits on the other side of the country, Tuesday’s filing in Disneyland’s home state has to do with the program the House of Mouse introduced at its theme parks a year and a half ago for individuals with disabilities and cognitive conditions like autism. A re-filing of sorts of California-specific claims dismissed by a judge last year in the Sunshine State, the 140-claim, jury trial-demanding lawsuit (read it here) seeks wide-ranging but unspecified damages of “no less than $4,000” on multiple occasions and relief for violations of the Golden State’s Unruh Civil Rights Act and common law. It also leaves what is now a growing legal stain on highly image-sensitive Disney.
“The systems, policies and procedures associated with the Disability Access Service which Disney rolled out in October of 2013 were certain to create discrimination against Plaintiffs, and it was obvious that the community of persons with cognitive impairments would be harmed by the DAS,” says the 425-page filing, citing allegations that the company axed the long-standing Guest Assistance Card program because it cut into their tour guide revenue stream not because of potential abuse of the system. “Overtly discriminating against Plaintiffs and others like them until persons with autism and other developmental disorders simply no longer visit Disney’s theme parks will likely end any potential disruption of the ‘magical’ Disney experience enjoyed by Disney’s non-disabled guests,” it adds.
“A.S.T. is incapable of understanding the concept of time, and thus cannot comprehend visiting an attraction in... Today’s extensive complaint for declaratory and injunctive relief and damages brings the number of families in court across America against Disney over the DAS to 58. “The DAS remains a horrible device through which Disney creates the appearance of offering an accommodation to autism families, but through which it really offers, at most, nothing,” said Andy Dogali, the attorney for both today’s plaintiffs and those in Florida. In many ways a consequence of the breakup last fall of the sprawling initial complaint filed back in April 2014, a number of the families in today’s complaint detail the same “meltdown” experiences their children have had at Disney theme parks since the new system went into effect in late 2013.
“A.S.T. is incapable of understanding the concept of time, and thus cannot comprehend visiting an attraction in the present only to be told it cannot be experienced until sometime in the future,” says Tuesday’s filing of one such teen with autism. “As such, the new DAS creates avoidable stressors for A.S.T., constantly escalating his stimming patterns toward meltdowns. Since Disney’s implementation of the new DAS, A.S.T. has experienced many meltdowns at the Disney Parks.” Those self-described meltdowns have been met by indifference or outright hostility by formerly helpful Disney employees, the complaint notes. The behavior commonly has led to the families having to leave the park and hence cut very short what was expected to be a rare but pleasurable experience for their younger members.
Not that the complaint doesn’t also see a lot of good in Disney — or at least its content and merchandise.
“Perhaps ironically, Disney’s Magic often plays a role in the development of young persons with autism,” says the new filing. Parents, special education teachers, speech pathologists and other professionals who interact with autistic children on a regular basis often use Disney’s adorable and highly recognizable characters, cartoons, stories, toys, and movies to assist in opening autistic children to the world around them. Disney becomes a driving force in the lives of these children, and can become the only part of their lives that generates visible signs of fun and exuberance.”

As with the previous cases, Dogali of Tampa, FL, and Hermosa Beach’s Eugene Feldman are representing the plaintiffs.

Tuesday, April 28, 2015

Is Your IEP Working? Mom Looking for Solutions in High School

The Proverbial Snowball Before Aging Out...Education and Support after Middle School.
Time is going by and here we are 15 years later, fighting the same battle with a few key differences; time is not on our side, gone is the idea that Nick might "snap out of it" with early intervention, his potential is no longer a total mystery and the clock is ticking, with us getting closer and closer to the day when there's nothing for him to do. Closer and closer to the day - that if I don't do all I can do - there's nothing but regret left for me, and loss of opportunity for him. I am the only one who's journey to get the best services for her kiddo, looks more like Mom on a treadmill than Mom on a journey!!!  I am the only one out there who thought after all the work we've done to make things better for our kids, we would be done battling day in and day out to get appropriate services by the time they were 17???   Was I the only one who thought maybe, just maybe in the past 15 years since the ASD epidemic began, the education system would have adapted, improved and prepared itself to accommodate the children that would become adults?  

I am sad to be working as hard now to find options for Nick, as I did when he was first diagnosed! I wasn't truly prepared for that. I held out hope that when he got to be this age, things would be better. Intellectually I knew it was possible the system would not be ready. I even talked about it, but emotionally I was in denial, I just wasn't prepared to be here again. I thought I’d matured, gotten calmer. Nope I’m still the same claw carrying mom I was when this journey began. I'm angry, and I'm sad this is where we are. I wasn't truly prepared for the degree of limited resources; I wasn't prepared for the small amount of qualified behaviorist/therapist/programs available to work with young adults vs kiddos. 

Right now I don't know the answer, but I do know we have to find one.  

I could use some inspiration right now? Any ideas? 

Thursday, April 23, 2015

NBC's Special on Autism and Aging Out; is There Hope?

NBC’s Dateline on Autism; Aging Out: What Next?

    NBC's Dateline aired "On The Brink," an hour-long special which focused on autism and the issue of aging out of school-based services.  It was a show where I didn't have to be psychic to know what was coming next; a crisis for our children, families and communities. Our communities have not sufficently addressed the issues facing families for our children for life after highschool, ongoing education, to access to vocational programs, or housing. Individuals with autism are not being given consistent access to what they need to contribute to society, work and share their gifts. Many young adults on the spectrum can work, they can pay tax's they can financially contribute to our society, and we need programs to make this happen. 

    In the end, the program shared what the families had found for their children, and sadly it was very clear that ASD is still the survival of the fittest illness, with families who have one or a combination of resources; money, time, education, determination and support finding something, after long struggles. Often the something beign far from whey they wanted, but more than what was typically available.  
    I wonder when it will change. Probably only when we change it. 
    Lastly, we began life skills at home when Nick was 11 and I'm so thankful we did. Today he can do chores, he has learned to be consistent, follow direction and mostly engage in un-desired tasks. I did'nt know how important this would be when we started, but I know now....thank goodness we started at home because his school can't offer what he needs. Donna

More on Transitioning/Vocational Skills;
The transition to adulthood can be an overwhelming experience for any family, but it is often especially difficult for families in the autism community. Many aren't sure of what is to come on the road that lies ahead, and as a result, the journey can seem daunting. 
The documentary Sounding the Alarm tells the story of Kent Martling, a 21-year-old with high-functioning autism who attends Riverview Boarding School in East Sandwich, Mass. At the time of the filming, Kent had only a few days left before his 22nd birthday, when he would no longer be eligible for services through the school system.
“It’s just a sad thing,” says Maureen Brenner, Executive Director at Riverview. “We’re proud of everything Kent has accomplished to date, but boy, would we love to have another few months to help him just master some of these skill areas he’s been working on.”
Brenner notes that while individuals with greater support needs will often receive services through the state after turning 22, “there are people at a higher functioning level like Kent that we describe as ‘falling through the cracks’ and may not have eligibility for services that could make all the difference in their lives,” she said. “If we don’t prepare as a society for that, they aren’t going to be the contributors to this country that they could be.”
Watch Kent’s story below:
Watch the full Sounding the Alarm documentary here.
Autism Speaks has a multitude of resources to help families of individuals with autism prepare for the transition to adulthood:
  • The Transition Tool Kit was designed to serve as a guide to assist families of individuals between the ages of 14 and 22  on the journey from adolescence to adulthood. The kit contains information on topics like self-advocacy, community living, postsecondary education, legal matters and more.
  • The Community-based Skills Assessment, developed through a contract with Virginia Commonwealth University’s Rehabilitation Research and Training Center, is a tool to help parents and professionals assess the current skill levels and abilities of individuals with autism beginning at age 12 and continuing into adulthood in order to develop a comprehensive personalized transition plan.
  • The Postsecondary Educational Opportunities Guide helps young adults and their families explore the various opportunities and learning environments available after leaving high school. This tool kit offers the best possible resources on the topic of postsecondary education to help families explore all of the various options available.
  • The Housing and Residential Supports Tool Kit was developed to assist individuals and families as they identify and secure appropriate residential supports and services by providing an overview of housing options and tools to help access these services.
  • The Employment Tool Kit provides young adults and adults with autism with tips and tools to help them research, find and keep employment in the current competitive labor market.
  • Autism Speaks is committed to increasing services and expanding opportunities for the rapidly growing population of young adults and adults with autism. To that end, we have launched a Housing and Community Living initiative to increase access to housing and residential services of adults with autism by reducing HCBS waiver wait lists and improving housing vouchers, and to expand the capacity of service providers who care for them. You can read more about our HCL initiative HERE and sign up to join this initiativeHERE

Monday, April 20, 2015

Autism Moms Have Stress Similar To Combat Soldiers

As a mom who was advised to that I was suffering from PTSD after Nick's diagnosis and my divorce ...all I can say is stress is real for all of us, and I'm sad our families have one more box to check. :(   



Autism Moms Have Stress Similar To Combat Soldiers

Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.
Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.
They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.
“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”
Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.
In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.
Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.
What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.
Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.
“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”
In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.

Suprise Party!!

 It's a great morning when the AM news has something positive to say! Today KABC had a story about an 11 year old boy with autism. Seems none of his "friends" showed up for his birthday party. So the neighbor-hood got together and threw a super bash for him!!!!!!!!! 

I love it when people get "reported" for doing the right much better than car chases, wouldn't you agree.  

Thanks KABC News! 

Tuesday, April 14, 2015

Study: Marijuana extract may help children with epilepsy

Study: Marijuana extract may help children with epilepsy

From age one, Hank Kovach suffered from severe epilepsy that could not be controlled with medicine. His mother, Megan, says he could have more than 25 seizures a day.
"One time, I thought he was playing in the other room," she told CBS News. "He was not playing in the other room, he was convulsing, turning blue. And that's when I thought I lost him."
Twice a day, Hank Kovach receives a marijuana liquid extract called Epidiolex as part of a small trial designed to see if medical marijuana could help with his severe epilepsy.
Last summer, she eagerly enrolled her son in a small trial designed to see if medical marijuana could help.
Twice a day, Hank receives a marijuana liquid extract called Epidiolex. The medicine does not contain THC, the ingredient that can cause euphoria, anxiety and paranoia. Kovach said the change in her son has been dramatic.
"We instantly saw results," she said. "He was smiling again. We saw a decrease in seizures. At this point, he was finally able to gain cognitive skills with therapy."
One-hundred thirty-seven children and young adults, average age 11, were given the drug. After 12 weeks, parents reported the number of seizures declined 45 to 50 percent.
"They had better sleep, better attention, better cognitive concentration, better behavior. Some of the kids clearly became more verbal, better coordination," said Dr. Linda Laux of Lurie Children's Hospital in Chicago, one of the researchers.
"I had one child who started walking while they were using the medication."
Now age 7, Hank still cannot speak, but is able to attend school, and has not had a seizure in months.
"My hope is for him to be seizure free, be happy," Kovach said. "My goal is to hear his voice, to hear him talk. We just want him to be happy."

Monday, April 13, 2015

Technology and Speech, a Perfect Marriage!

This is amazing and so exciting to see. I love supporting great folks, doing great things. Maria Johnson a great speech path - who we loved working with - left Los Angeles to work with the University of Texas. She recently sent me this video of the Virtual Reality work they are doing for people on the Spectrum. So exciteing, had to share :)

Spread the Word! The research and results that we are showing are astounding!

Sunday, April 12, 2015

Watch...Aging Out Crisis NBC Tonight!

Kate Snow Shares Powerful Stories Of Young Adults Living With Autism And Their Families' Desperate Search for Specialized Support
Dateline's "On the Brink" Airs Sunday, April 12 at 7pm/6c

NEW YORK - April 9, 2015 - On Sunday, April 12 at 7pm/6c, NBC's Dateline will air "On the Brink," a powerful new report, three years in the making, that puts a spotlight on autism's 'aging out' crisis. Over the next ten years, an estimated half a million young people with autism will turn 21 and 'age out' -- losing their eligibility for help through the education system. The stability and structure they have had nearly their whole lives will end, and there's no equivalent support system to take over. "On the Brink" takes an unprecedented look at the lives of young adults with autism and the extraordinary measures parents take to provide their children with specialized services and a better future.

Over a three-year period, Dateline chronicles the raw and emotional journeys of two New York-based young adults with autism and their families, as they transition from graduation to adulthood and make a leap towards an uncertain future. NBC News National Correspondent Kate Snow interviews two mothers who devote their lives to caring for their sons and helping them find a voice. Snow shares their heartbreaking stories and the tremendous challenges of navigating a broken system of programs that will allow their sons to progress in life. "On the Brink" documents both families' ongoing fight to help their children and revolutionize the way autism is perceived in the U.S.

"We spent countless hours with these two families for over three years and it truly was an eye-opening experience," said Snow. "It's one thing to know that services end for people when they turn 21, and it's another to see it play out. We are grateful that both families allowed us into their private lives, so we are able to share their compelling stories and shine a much-needed spotlight on this important issue."

Snow also speaks about concerns surrounding the 'aging out' process with Sharon Lewis, Senior Advisor on Disability Policy to the U.S. Secretary of Health and Human Services, and Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, a non-profit organization devoted to studying the issues facing adults with autism.

Early excerpts from Snow's interviews will air on TODAY and NBC Nightly News, Friday, April 10. Dateline's "On the Brink" airs Sunday, April 12 at 7pm/6c on NBC.