World Down Syndrome Day

Tuesday 21 March 2017 marks the 12th anniversary of World Down Syndrome Day.

Each year the voice of people with Down syndrome, and those who live and work with them, grows louder.

Club21SB has produced a special WDSD 2017 newsletter for you to tell people about Down Syndrome and the importance of speaking up for Down syndrome.  This is designed to be shared by email or facebook or printed and used in schools or at community events. The flyer can be downloaded or shared here:.2017 C21_SB WDSD Newsletter.

Down Syndrome International encourages their friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

Share your WDSD World Events before 21 March and your WDSD Stories after 21 March on our dedicated WDSD website in a single global meeting place.

#MyVoiceMyCommunity – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community

In 2017, we will focus on enabling people with Down syndrome (and those who advocate for them) to speak up, be heard and influence government policy and action, to ensure that they can be included, on a full and equal basis with others, in all aspects of society.

We will be encouraging people with Down syndrome to say #MyVoiceMyCommunity and we will ask everyone to respond to our call by sharing and showing the world how people with Down syndrome participate in the community alongside everyone else. You can take part simply by sharing details of WDSD activities or by photos, messages, quotes or in any way you choose, using the hash tag #MyVoiceMyCommunity as well as #WDSD17.

WDSD Global Video Event and WDSD Conference will both explore this important area of focus.


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

Reading Programs for Children with Down Syndrome

Studies have shown that children with Down syndrome CAN learn to read at an early ageAND that reading can become strength in their learning [Read more…]

US Department of Education supports inclusive Early Intervention

The US Department of Education recently issued a policy statement on Early Intervention for children with disabilities detailing the importance of inclusion in these programs. How are we going to do this? Come to our Making Inclusion Better conference on October 3 [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: [Read more…]

Myths of Inclusion

Making Inclusion Better speakers Natalie Holdren and Kristen Uliasz are both VPs on the board of CAL-TASH, the California chapter of TASH, an international leader in disability advocacy striving for fully inclusive schools, workplaces, and communities.

“For 40 years, TASH has advocated for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and resources for parents, families and self-advocates. TASH ensures that all individuals have the opportunity to learn, work, and enjoy life amongst a diverse community of family, friends, and colleagues.”

As a major contributor to the conversation, TASH provides important resources for those Making Inclusion Better. Natalie and Kristen will present Creating Inclusive Communities.



Making Inclusion Better

Save the Date!

SBDSA is excited to announce our one-day conference for teachers and parents on October 3rd 2015 8 am- 4pm at Torrance Memorial Hospital Health Conference Center.

Speakers will include Patti McVay recently retired from the Sie Center on Down Syndrome in Colorado and Laurie Pachl, on Making Inclusion Better.

Kristin Uliasz and Natalie Holdren from Cal-Tash on Creating Inclusive Communities.

Nancy Littiken, Executive Director Club 21 on Universal Design for Learning.

More information on the conference will be available soon.


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

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

Inclusion Binder



Inclusion the Pros and Cons

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

Inclusion 101 

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…]