Talk about the US organization and what is happening with DownsEd.
They are developing and publishing resources, provide services.
They want to create a world where knowledgeable ad supportive families and communities nurture the individual potential of every child with Down Syndrome.
Research + Support = Improved outcomes
Research drives everything else and has a high long term impact. The outreach is the publishing.
They have 100,000 beneficiaries – 80% are online. 6000 active customers in 70 countries.
Short books – research summaries and practical guidance
Web editions are freely available on Down Syndrome Online
Education and development
Health (due late 2010)
Language and reading, speech, memory and numbers programs under development…free programs are available at the site.
There is an online store – www.store.downsedusa.com
Down Syndrome Education Conferences – focused and has tracks for all ages – also has Web Seminars and Advice Groups. Times aren’t great in the US right now.
Research – they are doing an ongoing randomized controlled trial of a language and reading intervention designed for classroom use.
Looking at speech and language, learning and memory, reading, number and math, social skills and behavior.
See and Learn program – want to produce step by step supports – 4 strands of support – At home, Together (support groups), At School, Professional
Tika – could we do a See and Learn East side playgroup?
Q&A – Find a university in the area that would consider accreditation program.
Doing a study with a group with Williams Syndrome.
After you come into a an area – professionals are better equipeted – families are better equipped to help everyone do better. Conference is imparting knowledge and setting people up. On going support are the things they are evolving into an ongoing relationship with the group for supporting early learning programs. Looking at how best to do that. More groups are getting more hands on in providing these services. What is the best model for starting early learning groups? What are the best ways to support after the conference is over.
See and learn program – could people log in and look at the program. This would be a great resource for parents. Starfall.com Having a repository would great for schools, etc.
Is there a training could do locally – train the trainer sort of program? Find a professional in the community who can be advocates of the program - they don’t have a training the trainers and giving them an accreditation.
They need a cascade model – their time is limited. With more funding they can train US people. If we can raise funding to support training the training.
Parents and Partnership program. This would be very valuable. Would identify a DS specialist to get that person trained to understand how to do this. As a community we don’t want to replace services that should be provided by the teachers.
Make sure the tax dollars are used to have best practices – and this is the best practice for DS learning.
Research based best practices – this is the best way to get them to achieve. Get teachers to achieve. More work with national teaching groups for standards for reading and learning for each child.
IEP talk - Ways to give a presumption of need to start with and then fill in with research based supports to fill in the deficits. Is there any IEP guidelines for developing reading/literacy guidelines. There is an IEP Goal Bank – anything as a resource forward ideas to AIA.
MATH - Have they looked into touch math. Sue – not much, they’ve heard presentations. They think it is limited. Math you see. Numicon. Go through the Learning Program to learn about both program.
Austin, TX uses this program one Saturday a month. Getting the data to get national grants could help get everyone access to this. AIA can be a key group for this sort of funding group. The funding model could be a template.
How do you get to the university’s where teachers are being taught to teach them the right way to teach our kids?
Teachers and Doctors look with worst case scenario. Parent has to set the bar high and encourage the teachers to come up.
Value of research related to what do we know about educating people with Down Syndrome is on the website. Not Phonics first. Other parents pull DownsEd research to show what best practices were for IEP. They made it put the research in her file.
Inclusion Data is on the website with the Down Syndrome Research and Practice - go to site with research papers. Volume 9 Issue 3 has Inclusion information – includes data from this study.