Special Needs FREE Transition Back to School Webinar - TODAY

Last Minute ALERT!

 

FREE Transition Back to School Webinar, TOMORROW, Tuesday, Oct 6th, from 3:00 pm  to 3:30 pm. The webinar will cover a range of topics aimed to help you with your child's  transition back to school in the time of COVID-19.   Spanish language webinar will be this Thursday, Oct 8th, from 3:00 pm to 3:30 pm.  English Webinar: Tuesday, 10/6/20, 3pm-3:30pm Registration: https://tinyurl.com/airbenglish Spanish Webinar: Thursday, 10/8/20, 3pm-3:30pm Registration:  https://tinyurl.com/airbspanish

Autism; Aging Out in a Covid Pandemic – Part I

"Aging Out" - A Mom Releases Fear Built Over a Lifetime. 

For years I have lived with fear. Fear that feels like a quiet hum; always buzzing on the fringe of my consciousness. Fear, I think every parent who has relied on educational and therapeutic support for their child's care can relate to. 

It is fear of what those of us in the developmental disabilities community calls “Aging Out”, and it’s our collective Boogie Man!

For most of our children there will be no ongoing education, no higher-level learning, no exciting jobs, careers, dating, independent travels, marriage or children. Like other kids they graduate from high-school with lots of congratulations and accolades for a job well done, but the words fall flat when they are sent home to nothing or lack luster day programs. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath, today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  

Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected.

I however, did have an advantage over most parents because this is not my first fear rodeo! This phase mirror’s the early stages when Nick was diagnosed with Autism. While other 2- and 3-year old’s were going to preschool, I was sent home, with my nonverbal 2-year-old kiddo in tow, to figure out our life on our own. Armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure that would require lifelong care. I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  It’s been a long journey from diagnosis to aging out. Yes, I am fatigued, but I am so grateful to have made it here. As I stare down the tunnel of what’s next, I am hoping the bright light, is a flashlight to guide me and it is not a train.

Parents of most neurotypical children anticipate a life after high school graduation for their children as a stepping stone into the future. A future, commencement speeches describe as filled with purpose, hope and optimism. That is not the reality of most families raising children with autism and other developmental disabilities. We don’t experience graduation as the start of a new chapter filled with exciting possibilities, purpose, college or work, dating, marriage and children. Instead the landscape for life after high school for our children looks like the end of their best times, a downhill slope offering little or no hope for the future.

Why? Because the world does not value investing in their ongoing education or building a future for our children.  I took Nick off the diploma track to delay this moment as long as I could. Leaving the diploma track meant he could stay in school until he turned 22. Staying in school provided an opportunity for him to continue to learn, while staying engaged in a safe regular routine with his friends for as long as possible. I took him off the diploma track while he was in middle school specifically to postpone the inevitable; the day school would end and with it  options for an engaging fulfilling life. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected. 

I however, did have an advantage over those parents who had not been caring for their children 24/7, because this was not my first fear rodeo! I had experience providing all of his education at home, and I since my son didn't have friends, or playdates I was used to providing his social life. Who, know that would be an upside! But it was because this phase of our journey mirror’s the early stages when Nick was diagnosed with Autism. When I was sent home armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure, that would require lifelong care. While other 2- and 3-year old’s were going to preschool, I was home with my nonverbal 2-year-old kiddo trying to figure out life on our own and learning how to be everything to my child. 

I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  
It’s been a long journey from diagnosis to aging out. Sometimes moving unbelievably fast, and other times painfully slow.  But we made it. We are staring down the tunnel of what’s next. Praying and hoping the bright light at the end, is a flashlight to guide us and it is not a train.
 
 

 

Death of a Superpower

Death of A Super Power

Descriptions commonly used when others describe me;

always positive, happy, kind, optimistic, rose colored glasses, upbeat, determined and strong.

I am that person to my core. I love being this person. These traits are my superpowers. They are the superpowers that made building a business possible in a crazy industry, where few women thrive. They are the powers that make being a single mom, raising two kids alone, and raising a son with autism; no matter how challenging, a place where I find enormous joy. 

Being this person fuels me, keeps me safe; connected to the things important to me and protects me in a world that otherwise might be too much for me.

But loss, especially prolonged loss can make a person think differently. In my case it wasn't one loss it was a barrage of loss, personal and societal. One loss after another in a short period of time, four years to be exact. With no time to recover from one loss to the next loss, I was weakening unaware my superpowers, my shield was thinning, cracking. 

This period began with the loss of our cherished dog of 16 years, Shadow. Shadow was my daughters’ best friend and her confidant. Shadow was her “Person”.  

Then two weeks later my mom. My brilliant compassionate and to me perfect mom who had been living with us since her diagnosis of cancer, who I was blessed to nurse during her hospice. My beloved mom who helped me raise my kids. My mom who is why I am who I am, why I exist. My mom who gave me the gift of being beside her, holding her hand when she took her last breath.  

My mom was gone. My daughter and I had both in a matter of weeks lost our anchors and the house, our home was missing two souls and it felt empty. 

Next came the sudden death of a young friend, the fires in Australia. I would wake at night imagining my friends suffering, and my mind filled with visions of millions of animals dying, burned to death. All the while living a daily discomfort resulting from a President who left me feeling abandoned as an American, a human being.

Then came the search and subsequent tragic loss of my sister through unimaginable circumstances. Our reality played out like a chilling episode of Nightline, not real life. Not my life.

When reality sank in, and the raw hurt of the moment settled, a new feeling began to set in. I can only describe this feeling as a deep all encompassing fatigue - a sort of dull low-grade hurting in my heart. 

My family of four, my mom and three girls was now only two. 

And, before I could identify what I was feeling, much less catch my breath, we were on lock down. Covid 19 hit America introducing the world to a new reality. People were scared and scrambling. For me it was dual reality. I was sad for humans but I felt happy for the earth who was clearing, demanding a break from the daily human activities destroying her. She needed and deserved a break. 

The day my daughter’s office closed due to Covid and workers across the Globe were sent home to shelter in place, came the news a dear friend had inoperable brain cancer and eight weeks later she slipped away. Fatigue.

Fatigue turned to despair as I watched George Floyd. Over and over we watched a man being murdered by those whose job description is "Protect and Serve". 

My shield crumbled. 

Thinking of my children, unable to escape the truths of racism, I felt fear. I have diligently worked to ignore and keep this truth out of their daily narrative. A truth I work to allude and insulate myself from by living in a very liberal community. A community where the racist communiques are subtle taps, not blatant attacks with guns, police knees or batons; creating an illusion of safety for me and my children. 

My children, my precious fabulous children with brown skin are not safe. This truth is just too much for this mama. Too painful. My children are in danger just for being them, and as a parent the danger is one, I can’t protect them from. I close my eyes and I see them being harmed and I'm helpless. I’ve become too porous. I seem to feel the pain of the world, it's people, the planet. I am like an open wound with exposed nerves and my positivity has been replaced with reflexes of pain and grief.  For the first time in my life I was asking myself "What's the Point?"  What matters in a world where a living being, an innocent person can beg for life, and still to be killed. What does it matter that we work hard to build a life for ourselves and our children when they are not safe anywhere. What does it matter that we put them through school, if when they graduate into a world where the wealth inequality makes financial success impossible for most. What does it matter that we do our best to be good law abiding Americans, while others in the highest of positions disregard the rule of law and our Constitution. What does it matter when the world seems to be going up in flames fueled by greed, fear, racism, rage and destruction? 

Without my superpowers to protect me, I can't stop asking myself "What's the Point?"  This is not a suicidal type question, it is a despair question. Because for the first time in my life I had no answer. No optimistic retort, no positive spin. I had nothing, I was blank. 

Then out of this fatigue came hints of possibility, hints of what could still be. Maybe everything had not gone to shit, instead maybe it was all being broken down so the universe could rebuild..and in seeing this I was clearly feeling  more me. 

I watched the country collectively agree to have a conversation about policing, racial equality and the role we all play in it. I watched young people stand up and say "No More", because they don't want to live in a world with this type of injustice and inequity. 

That's when it hit me. Evolution is ongoing, stopping for nothing in or of this moment. The universe is old, and it is wise beyond not just our knowledge, but our comprehension.  It’s been here for a period of time; we can’t quantify or comprehend. Our universe has literally experienced the unimaginable, yet here it is, here we are. 

This leaves me where I am right now. Thinking, maybe there is no big idea, just this, life. Perhaps our only purpose is having a human experience. A wonderful human experience with all that entails; nature, love, food, joy, pain, hope, intelligence, family.  

And, what if we only get this brief moment in time to learn how to love ourselves, each other and this planet and then we leave it.

When I make it all that simple, I feel better.  
When I make it that simple, I know what to do. 

Be, Live, Love

SPECIAL EDUCATION IN THE TIME OF COVID-19

SPECIAL EDUCATION IN THE TIME OF COVID-19

Status of Federal Waivers Due, in large part, to the grass roots efforts and letter writing campaigns from parents, the Department of Education (DOE) will not recommend waivers of the essential parts of IDEA, the federal law creating what we know as special education. Thank you for your efforts! Although in California certain State timelines may be waived per S.B. 117, no such waivers will be recommended under the federal law. The waivers that were recommended included timelines for assessing toddlers for special education as they transition from Part C to Part B services at the age of three. The DOE recognized that while some flexibility needs to take place during this crisis, such flexibility is already written into the law. At least for now, the DOE has refrained from any action that would harm the basic rights of students with disabilities and upheld their rights to a free appropriate public education under the IDEA and the Rehabilitation Act, We are hopeful that schools and districts will exhibit the ingenuity, innovation and grit of which the Secretary spoke and work with families to meet the challenges facing their most needy population of students.

The Rights of Students with Exceptional Needs The current crisis has changed the landscape of life dramatically. From simple chores to how we work to how we educate our children; nothing is the same. The same applies to special education. However, even in these dire times, schools and districts are still responsible for the education of the children they serve, including, or especially, students with disabilities.  This is why the dedicated team of lawyers, advocates and other professionals at Newman Aaronson Vanaman LLP continue to work to advocate for the needs of their clients, even more aggressively during the crisis. While there is no expectation that IEPs “as-usual” will take place, this newsletter lets you know that IEP meetings are still taking place, either virtually or telephonically. The same is true of IEP services, mediations and due process hearings. Conservatorship and Estate Planning also continue. School physical plants will be closed for the rest of this school year. Because Districts are providing educational services to general education students, services and supports must also be provided for students with disabilities. Unfortunately, this does not mean, and often cannot mean, the same level of support, especially for face-to-face services as in existing IEPs. The needs of children must be determined on a case by case basis. In some cases equal access to education for students with disabilities through online or telephone support may be possible, in others it may not.  Current directives from the Federal Government provide that the provision of compensatory services will be determined on a case by case basis when school sites reopen. Keep track of the dates and times services should have been provided (per the existing IEP) so that when schools reopen you can protect your claims for compensatory services. Click here for a worksheet to record the services that are and are not being provided for your student.

Disputes during lockdown Families may need advocacy services now more than ever.  Although largely working remotely, we are providing representation for IEP meetings, and filing for due process. The Office of Administrative Hearings is still taking complaints, holding mediations and hearing cases. If you wish to access our services for any purpose, fill out an intake form, and one of our attorneys will be happy to work with you. Timeline Waivers In California, under SB117, certain timelines for providing an assessment plan, or reviewing an assessment, have been extended due to COVID-19 to include the days schools were closed.  However, SB117 specifically does not waive any of the timelines under the IDEA, so all federal timelines remain in effect, including the necessity of reviewing an IEP annually, and conducting assessments every three years. The CA Department of Education provides updates with regard to COVID-19 weekly.

Resources Counsel of Parents Attorneys and Advocates COVID-19 page. A wealth of information for parents on how to handle special education during the Coronavirus. To review previous guidance related to COVID-19 and services to students with disabilities, issued by the CDE on March 13, 2020, visit the CDE website. Updated information and resources from the CDE related to the COVID-19 response. Federal guidance from the USDOE titled “Questions and Answers on Providing Services to Children with Disabilities During the Coronavirus Disease 2019 Outbreak.” To review federal guidance from the USDOE Office of Civil Rights on how to protect students’ civil rights. Guidance issued by the CDE on distance learning, including considerations for students with disabilities. For research on how online learning can be made more accessible, engaging, and effective for K-12 learners with disabilities, visit the Center on Online Learning and Students with Disabilities. Common Sense Media has curated a list of the Best Special Education Applications and Websites based on recommendations by educators who work with students with disabilities. The Council for Exceptional Children (CEC) has developed COVID-19 Information for Special Educators, including a forum for members on how to adapt IEP services during school closures. The State Educational Technology Directors Association (SETDA) offers strategies and resources for ensuring that online learning supports students with disabilities.

Covid 19 Impact on Public Education: De Vos takes high road leaving (IDEA and the Rehabilitation Act) untouched

Covid 19 Impact on Public Education: De Vos takes high road leaving (IDEA and the Rehabilitation Act) untouched. As a result we must still wait to see what States and School Districts agree to provide compensatory education services to those enrolled in special education programs. 

U.S. Secretary of Education Betsy DeVos will not seek changes to the central tenets of the Individuals with Disabilities Education Act in response to the coronavirus pandemic.

In a report to Congress released late Monday, DeVos recommended that lawmakers consider what the Department of Education called “additional flexibilities on administrative requirements.”

But, DeVos said in the 18-page document that her agency “is not requesting waiver authority for any of the core tenets of the IDEA or Section 504 of the Rehabilitation Act of 1973, most notably a free appropriate public education (FAPE) in the least restrictive environment (LRE).”

The report came at the request of Congress, which as part of a federal stimulus law approved in late March, gave DeVos 30 days to provide recommendations for any waivers she thought necessary under IDEA to “provide limited flexibility” to states and school districts during the emergency.

Disability advocates were unequivocal that they thought no waivers were needed even as most of the nation’s schools remained shuttered. But, groups representing school administrators had reasoned that given the extraordinary circumstances, temporary modifications were justified.

“We undertook this task acknowledging the reality that most students and teachers are at home today; yet, America’s teachers want to keep teaching and students need to keep learning,” DeVos said in a statement. “While the department has provided extensive flexibility to help schools transition, there is no reason for Congress to waive any provision designed to keep students learning. With ingenuity, innovation and grit, I know this nation’s educators and schools can continue to faithfully educate every one of its students.”

The Education Department said that the recommendations were rooted in several key principles including that learning must continue for all students, decision-making should be based on what’s best for students, parents must be informed of how waivers would impact their kids and services that have traditionally been provided in-person will have to be done differently.

“The secretary determined there is no reason that a student’s access to FAPE cannot continue online, through distance education or other alternative strategies,” the agency said in an announcement about the report.

DeVos is recommending that Congress allow her agency waiver authority to ensure that children with disabilities can continue receiving services after they turn 3 if the pandemic delays an evaluation that’s supposed to happen at that juncture. The secretary is also seeking changes to requirements of IDEA personnel development scholarships and more flexibility in funding for vocational rehabilitation.

“I am pleasantly surprised that it appears that the secretary did not succumb to pressure and chose the high road to leave the important provisions of both (IDEA and the Rehabilitation Act) untouched,” said Denise Stile Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that represents special education attorneys.

Officials with AASA, The School Superintendents Association, as well as the National Association of State Directors of Special Education and the Council of Administrators of Special Education — which had all pushed for temporary IDEA flexibilities — did not immediately offer comment on the report.

Education and Special Needs: Covid 19 You Still Have Rights

The rights of our kids are at risk. Decisions are being made now that will impact special needs education beyond this current pandemic. Please share and join if you can.

Accessing Education, Services, and Health Care during the Coronavirus Crisis

You Still Have Rights: Accessing Education, Services, and Health Care during the Coronavirus Crisis Friday, April 10/Viernes, 1 de abril 2-4 pm Individuals with disabilities still maintain their rights during this difficult time, including the right to not being discriminated against in health care and education. Join us for this week’s webinar with experts who will explain the rights of people with disabilities during this time. In addition, Disability Voices United will release preliminary results from their survey on the current needs of people with disabilities.  Presenters include: Andy Imparato, Executive Director, Disability Rights California Tauna Szymanski, Executive Director and Legal Director, Communication First Judy Mark, President, Disability Voices United More presenters to be announced Click at 2 pm on April 10th to view Zoom webinar/Haga clic en el enlace el 10 de abril a las 2 pm para ver el webinar en Zoom This webinar will be conducted via Zoom. Here is how you can participate: By computer using video: click on this link: https://zoom.us/j/103799431. Note: if you have never used Zoom before on your computer, you should go in beforehand to download the app at zoom.us By cell phone or tablet with video: You must download app, see link below. At time of call, go into app and click on "Join." Type in the Webinar ID - 103 799 431 By cell phone with voice only: just tap here: +16699006833,,103799431# By landline phone: 1-669-900-6833. Enter ID: 103 799 431 This webinar will have simultaneous translation in Spanish through a conference call line. Be aware: this webinar will have several English-language visual presentations. You will not be able to see them if you only call in. You will also not be able to access Zoom's question and answer function. We are working on an alternative for people who call in to ask questions. For simultaneous Spanish interpretation: Call 515-604-9835 and enter the access code 245384#.  Este webinar se realizará por el sistema de conferencia por internet Zoom. Estas son las maneras en las que puede participar: Por computadora usando video: haga clic en este enlace: https://zoom.us/j/103799431. Nota: si nunca ha usado Zoom en su computadora, debe descargar antes la app de zoom.us Por teléfono celular o tableta con video: Debe descargar una aplicación, vea el enlace a continuación. A la hora de la llamada, vaya a la aplicación, y haga clic en "Join" (Entrar a una reunión). Escriba el ID de reunión: 103 799 431 Por teléfono celular en inglés solo con servicio de voz (sin video), haga clic aquí: +16699006833,,103799431# Por línea telefónica fija (inglés): 1-669-900-6833. Ingrese el ID: 103 799 431 Se ofrecerá interpretación simultánea al español a través de una línea de teleconferencia aparte (todos los participantes estarán en modo silencioso y solo es para escuchar la traducción al español). Debe tener en cuenta: este webinar tendrá muchas presentaciones visuales en inglés. No podrá verlas si solo llama por teléfono. Tampoco podrá hacer preguntas a través de Zoom. Estamos buscando una solución para que las personas que solo participen por teléfono puedan hacer preguntas. Para escuchar la interpretación simultánea al español: Llame al 515-604-9835 e ingrese el código de acceso 245384#. Download Zoom App for Cell Phones and Tablets/Descargue la aplicación Zoom App para celulares y tabletas How are you doing during the coronavirus pandemic shutdown? Are you or your family member getting the services and supports you need? Take this survey for self-advocates and family members on the coronavirus outbreak to let us know what the needs of our community are Encuesta sobre la epidemia de coronavirus para personas con discapacidad que abogan por sí mismas y familiares The purpose of this survey is to see how people with disabilities are doing during the coronavirus epidemic. We will use this information for our advocacy to ensure that individuals and families are supported during this crisis. El propósito de esta encuesta es ver cómo está la situación de las personas con discapacidades durante la epidemia de coronavirus. Answer the survey in English Responda a la encuesta en espanol Resource website on coronavirus Sitio web con recursos sobre coronavirus If you need more information about coronavirus and its impact on people with disabilities, visit our website. Visit the website in English Si necesita más información sobre coronavirus y su impacto en las personas con discapacidades, visite nuestro sitio web. Visite el sitio web en español To share on social media, use this link. Para compartir en las redes sociales, use esta enlace. Disability Voices United works for: Choice and control over our lives Meaningful outcomes that matter to us Systems that are equitable and accountable to us Please consider donating today to support our important work! Donate Visit DVU's Website Join Visit the Interchanges on Self-Determination and Communications Rights ‌ ‌