UpVoice

You are welcome to UpVoice where you’ll learn how to be an awesome self advocate. [Read more…]

Comedy…and magic too!

Comedy & Magic ClubPlease join us for an evening of laughter at the Comedy and Magic Club on June 9th in Hermosa Beach.  Jason Collings is the headliner. Two drink or dinner minimum.  Sorry kids, you must be 18 to participate.
The show starts at 8 pm; doors open for dinner and / or drinks at 6:30pm. Guests must be seated by 7:30.
$20 per ticket, all proceeds go to SBDSA when you buy your ticket from SBDSA.

Contact Nori     @SBDSA.org for tickets!!!

Celebrate World Down Syndrome Day with SBDSA

On World Down Syndrome Day, Monday 21 March 2016, join us to encourage children and adults with Down syndrome to say “My Friends, My Community” [Read more…]

Making Inclusion Better

Registration for our one day conference for teachers and parents is now open. The conference will be held at Torrance Memorial Hospital Health Conference Center on October 3rd 8 am-4 pm.

?Necesita interpretación en Español en el evento?  Podemos hacer esto disponible si se registra hacia el 26 de Septiembre.

Please send this flyer to your IEP team (and anyone else you think might be interested) using this link: http://sbdsa.org/wp-content/uploads/2015/08/Making-Inclusion-Better-Flyer.pdf [Read more…]

Your new Board of Directors

President: Kelli Rea

I am a South Bay native who graduated in 2003 with my B.S. in Accounting from CSULB. I went to work for Deloitte & Touche, LLP where I met my husband. In 2008 we were married and adopted our fur-baby, Rambo. Two years later we began our family. Charlotte was born in 2010, and Daniella (T21) was born in 2013. I am currently a full time wife and mother (CFO of my household if you will).

Executive Vice President: Karin Ferrari

I was born as raised on Long Island in New York and moved to California with my husband Matthew Ferrari in 2010. I worked for a Transportation Logistics company as an Account Manger & Operations Supervisor before having my daughter who was born with Down Syndrome in 2013. I am currently a stay at home mom to Arianna and expecting a new addition in June 2015! We found out Arianna would be born with Down syndrome in my 20th week of pregnancy. I became involved with the SBDSA when Arianna was only three months old and it has been such an amazing experience to meet so many wonderful families who have helped guide me through this journey. I am excited to be running as Executive Vice President of the SBDSA because I would like to be able to help others who find themselves in the same position either during pregnancy or after birth. This is a wonderful organization and I truly believe the sky’s the limit with what we can offer and do!

RaeFerrari

Conkoff KronbeckHoliday

Publicity Vice President: Lisa Concoff Kronbeck

My name is Lisa, and my wife is Mandy. Our daughter, Leah Valerie, is 22 months old, and was born with Down syndrome and long-gap esophageal atresia. Mandy is a community college English professor, and I am Leah’s own personal attendant, nurse, clown, social media director, chauffeur, and in-house counsel. We have enjoyed meeting new friends in SBDSA, and I look forward to the opportunity to broaden awareness about SBDSA and the community and support it provides to families across the South Bay.

Secretary: Xindy Holliday

I’m a stay at home mom to Royal (T21) and Pearl. And I grew up in the South Bay. Growing up I knew that if I ever had kids I’d want to stay home. I feel so lucky and privileged to be able to live out my dream.
At 17 weeks pregnant we found out about Royal’s diagnosis via amnio. Royal was admitted to the NICU, at Kaiser Sunset for his first 25 days of life. And then three months later he would have two open heart surgeries to correct his heart defect, a complete AV Canal.
On March 21, 2012, I reached out to SBDSA and I’m so happy I did. It was nice to meet other parents of kids who had Ds and listen to them share stories of their day to day life. I love to see our groups grow with every new family that has joined.
Ever since we came home from Children’s Hospital Royal has been healthy and continues to grow, thrive and amaze us with his infinite curiosity and love of learning. Royal started preschool at Launch at the beginning of March.
Pearl was born on April 21st of 2014 and she is not the easy going baby I imagined she would be. Being a parent to a typical developing baby has been eye opening with its own challenges as well. She is however a healthy baby girl and is so loved by us all. I feel like Royal is the best gift I could have given my daughter and I look forward to watching my children grow together. Our family lives in Torrance.

Remaining in post are:
Treasurer: David Socol
Membership Vice President: Roz Mooney
Programming Vice President: Carrie Wetsch
Information Technology Vice President: Brian Wetsch
Social Action/Community Outreach VP: Bronwyn Sheilds & Maynor Tecun
Ways & Means Vice President: Nori Dempsey
Youth Activities Vice President: Kathy Troeger
Medical Vice President: David Socol
Historian & Past President: Karen Cull

Spotlight on…the Statewide Task Force on Special Education

On March 11th the Statewide Task Force presented their final report. Many of you may remember that some of us attended a public forum for the Task Force in February 2014 and I was excited to speak to about our experience of special education and to be listened to.

What did the Task Force come up with? The whole document is available on-line for you to view and the summary at least is succinct.

Carl A. Cohn, chair of the Task Force presented their conclusions and recommendations as a ‘major leap forward’ and indeed it was received by the board of education as such, described by board members as a complete shift in attitude and our understanding of special education is viewed by the state in California. You can view the meeting on video. I just hope it happens before our kids are too old to benefit!

Christina A Samuels reported in Education Week on the statistical data that motivated many of the the Task Force’s recommendations. They found that California lags behind other states in serving its 600,000 students in special education. California is below national averages when it comes to including students with disabilities in general education settings. For the 2011-12 school year, about 22 percent of California students with disabilities spent only 40 percent or less of their school day in general education, compared with 14 percent for students nationwide.

The Task Force instead recommends that the state develop a SINGLE system. “In a coherent system of education, all children are considered general education students first; and all educators, regardless of which students they are assigned to serve, have a collective responsibility to see that all children receive the education and the supports they need to maximize their development and potential so that they can participate meaningfully in the nation’s economy and democracy.”

Although the Task Force can be seen as a champion of inclusion, they still see that “special education teachers hold a critical place in this system, selecting, designing, and delivering appropriate early intervening services and…providing the additional special education services that only a teacher trained specifically for this role can provide.”

But perhaps most revolutionary is their recommendation (in line with Federal law and educational expertise) that: “most children would spend as much time as possible with their classmates in their general education classrooms.”

The Task Force made recommendations is specific areas of policy:

  • Early Learning

The availability of quality services … for toddlers should not depend on geography.”

The Task Force asked for program standards that all providers must use and that reflect evidence-based, developmentally appropriate practice as well as assessments that are “based on common standards, inform instruction in real time, accurately monitor student/child growth, and are educator-friendly“.

In addition they recommended required professional development training and technical assistance for educators already in the field.

  • Evidence-based School and Classroom Practices

The focus of this section of the report is on Universal Design for Learning. This is a new educational idea that is well worth reading about. Put simply rather than adding a wheelchair ramp to a building, the architect builds with disabled users in mind. In education UDL focuses on the child with disabilities at the earliest planning stage and then builds up around that plan for children who need more challenging instruction.

The Task Force saw UDL as a “foundation for a coherent system of education that provides instruction, services, and supports to students as they are needed—through a multi-tiered system of supports that incorporates response to intervention and social and emotional learning.”

  • Educator Preparation and Professional Learning

Most significantly the report recommends that all aspiring teachers (Gen & SpEd) be required to master content standards, evidence based strategies, pedagogy, intervention strategies, and collaboration among teachers and across assignments— essentially in a “common trunk.”

Currently a SpEd credential doesn’t cover Gen Ed content standards and Gen Ed teachers receive little training in special education methods. The Task Force proposes that all teachers be prepared in UDL, Multi-Tiered System of Supports (MTSS), social-emotional learning and positive behavioral strategies and supports, and Response to Instruction and Intervention.

The task force also called for Special Educators trained for educating students with low-incidence disabilities—students who have lost hearing or vision, in Assistive technology and AAC, as well as providing para-educators and assistants with professional learning opportunities.

  • Assessment & Accountability

IEPs need to consist of goals that are aligned to Common Core State Standards. The Task Force supported the need to replace the California Alternate Performance Assessment (CAPA) for students with the most significant cognitive disabilities with a test that is aligned with Common Core. Teachers and schools need to be accountable for the progress that these students make in meeting the standards. The new California test will probably be similar to the NSCS explained in this video from NDSS, aligned to the Smarter Balanced assessments that the other California children will take.

  • Family and Student Engagement

The Task Force recommended that there be a statewide system of fully funded Family Empowerment Centers (FECs), as already legislated in SB 511, and increased funding to Family Resource Centers(FRCs).

  • Special Education Financing

The Task Force want to equalize the state’s support for special education by overhauling the system of to give schools and districts more control over how they spend their money and to hold them accountable for adequately meeting the needs of students with disabilities (a model distinct from but coordinated with and similar to the LCFF). They also recommended changes to the funding of SELPAs.

At a federal level the Task Force wants to clarify eligibility for college scholarships, under federal guidelines, to include students with disabilities who have received a certificate of completion (rather than a diploma).

By Karen F. Cull

Spotlight on Inclusion

Spotlight on…Inclusion

Inclusion is huge word in our community; it is worth taking some time to think what it really means. Often we use it as an abbreviation for ‘full inclusion in a general education class’ but there is so much more to inclusion.

Inclusion is for everyone and everything. Inclusion is for people with Down syndrome, even those who also have autism or ADHD, or a cardiac issue. Inclusion is being part of your local community, having a productive role in society, having meaningful friendships with people who enjoy your company. Inclusion happens in soccer teams, in churches, in social clubs and in workplaces.

Fifty years ago, and even today in many countries, children with Down syndrome do not live at home with their families. The first step to inclusion was inclusion in the family. Still our paperwork in California reflects this change as if a new step. Our archaic Regional Center MediCal waiver is designed to support families choosing to raise their children with developmental disabilities at home instead of in an institutional setting, as if any of us ever considered anything else.

Inclusion in education is our biggest battle because it is in schools that we teach people how to live in a community. If we can teach all the children to include everyone in their playground games and in their math class, it will be so easy for them to include people with special needs in their startup company. Inclusion in education is our battle for our children’s future.

Many families do not want ‘full inclusion in general education’ because they know that their children will not do well in a large General Ed classroom and because they recognize the benefit of the training and unique experience that special education teachers bring to their profession. The choice really does depend on the individual child. However even children in a segregated special education class can benefit from being partially included in a meaningful way.  Seeing the practice of inclusion as a dynamic continuum is, if you like, an inclusive approach to inclusion.

To be meaningful I believe it has to include ‘belonging’. I have seen the most disabled challenged children react to not being included with other children that they feel they belong to. Forget about numbers and abc’s. What school teaches us is how to be a community, and belonging being the primary benefit of living in a community; it is a huge motivating force. Belonging is one of those things like driving or swimming that you have to learn hands on by doing it.

The segregated setting has its benefits but these have to weigh against problems such as safety in a classroom where non-verbal children sometimes are ‘restrained’. For the most part special education teachers are well meaning and dedicated individuals, the angels of the teaching profession, but things can go wrong. An academic study on self-contained classrooms shows what the restrictive environment can be like for learners who are already challenged.  Also as the number of children who are not included declines, the distance the children need to travel to a specialized classroom increases, using up the child’s learning time.

Many families want full inclusion in General Education and still find it difficult to persuade school professionals that it is possible. What families need is resources, training and support. Certainly the law is on their side both federal and California state legislation supports children with disabilities being educated with their community in their neighborhood school. The Individuals with Disabilities Education Act (IDEA) 2004 requires that children are educated in the least restrictive environment appropriate for that child’s needs. The law specifies that the default environment is the school where the child would be educated if they were not disabled and requires that schools modify the curriculum and provide accommodations suited to the child’s needs as set out in their IEP. The same demand is found in the California State education code, that the school district should maximize the interaction between disabled and non-disabled children. But this awesome idea is often set aside by California school districts as too difficult or too costly. The courts have been quite clear that the burden is on the school district try to make it possible. However the burden usually falls on families to make it happen.

What teachers and administrators need is resources, training and support. Unfortunately the wheels and cogs of the state education system is taking along time step up to the plate and fit the California education system to the federal requirement, leaving teachers, administrators and families on their own trying to make inclusion work.

For families seeking to persuade school districts to include their children the best resource is an advocate. SBDSA has a list here of advocates. There are also the free or low cost advocacy services available through regional centers, OCRA (Disability Rights) Developmental Disabilities Area Board 10 or mediation services through SW SELPA.

Many experts and studies have concluded that inclusion is the best learning environment for most children with Down syndrome but it is no cakewalk. Both for parents and teachers a lot of extra work is required. Special education often focuses on self-help skills, everyday living skills which can be missed in General Ed, leaving it to the parent to teach stuff like getting dressed, toileting, eating with manners, stuff that most kids learn before they ever go to school.  Also meaningful inclusion usually means modifying school work, projects and ‘frontloading’ (introducing the child to vocabulary and concepts before they come up in class) which is a lot of extra work for parents. The biggest magic key is communication between team members, teacher, parent, and therapist.

Club 21 in Pasadena is a unique organization offering families hands on help and training with home school communication, modification and behavior support as well as training for professionals. DSFOC and TASH are also committed to providing practical help for education professionals seeking a more inclusive classroom. And there are a number of great websites such as the Inclusive Classroom and Swiftschools as well as facebook groups like Inclusion for Children with Down Syndrome. If you are trying to increase your child’s inclusion in education, please reach out to one of these organizations for help.

Some school districts are behind the movement, employing inclusion specialists to promote modification and accommodation and team communication. There are also charter schools committed to the full inclusion model such as WISH and CHIME. But it is remarkable how many school districts can to ignore national and state education policy in favor of their own ‘time tested’ systems.

For many families the biggest barrier is the teacher’s attitude which is understandable given that the state still segregates general and special education teachers in its credentialing system. The teacher feels unprepared to take on responsibility for a situation for which they were not suitably trained, undermining their status as a professional. Usually the teacher ‘comes around’ to see the child’s potential around April or May just in time for a new teacher to take over. The introduction of the Common Core provides a unique opportunity to retrain teachers including the idea of Universal Design for Learning, which is made possible by the new skilled based standards. However we need to support the idea of differentiated learning in all classrooms.  It is food for thought that tracking for gifted kids is perhaps as limiting to all children’s potential as some models of self-contained special education.

Now you are thoroughly exhausted but it is worth reiterating why it is all worth it. As so many parents remark, ‘there is no special needs Target’, no special needs gym, no special needs park. We need our kids to live in the world and that means we have to teach them how to live with the unlabeled. And we need the unlabeled to learn how to live with them.

by Karen F Cull

Resources
From Emotions to Advocacy Wrightslaw

Whose the slow learner? : A Chronicle of Inclusion and Exclusion by Sandra Assimotos McElwee 

Meeting the Educational Needs of Children with Down Syndrome: Keys to Successful Inclusion

Paula Kluth Is your School Inclusive?

Articles on Inclusion collected on SBDSA.org

Inclusion Binder

Successful-Daily-Practices-of-Inclusion-Teachers-of-Children-with-Down-Syndrome.

Experiences-of-Inclusion-for-Children-with-DS

Inclusion the Pros and Cons

Inclusion Educating Students with Down Syndrome with their Non-Disabled Peers

Inclusion 101 

Spotlight on…Co-occuring Down Syndrome and Autism Spectrum Disorders by Jennifer Brownell

In January of 2007, our son Noah was born 3 months prematurely and diagnosed after birth with Down syndrome.  December 5, 2012 our lives were forever changed.  That was the day we were officially given an Autism Spectrum Disorder diagnosis for Noah who was almost six at the time. [Read more…]

Reading can be a strength and support learning and language

Down Syndrome Education International has been tweeting their 21 reasons why research on education makes a difference in the lives of individuals with Down Syndrome. No. 3 is that

Reading can be a strength and support learning and language

[Read more…]

Spotlight on…Sibshops

What has been the most important support for you on your journey as the parent of a child with Down syndrome? For me I would without hesitation say, the experience of other parents with older or the same age kids with DS. I have enjoyed that support through HRC, SBDSA, Club 21 and on Facebook through CAPODS. If you agree, then consider this: the siblings of people with Down Syndrome need access to the same peer support that we enjoy. [Read more…]

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