Adding Intervener Services to the list of IEP Related Services

Public comment submitted to the U.S. Department of Education on August 10, 2017, to www.regulations.gov on ED-2017-OS-0074, comment period deadline is August 21, 2017.

"The U.S. Department of Education is inviting comments regarding their regulations.  The June 22, 2017 Federal Register contains a request for comments, In accordance with Executive Order 13777, ‘‘Enforcing the Regulatory Reform Agenda", signed by President Trump February 24, 2017.  The Department of Education is now seeking input on regulations that "may be appropriate for repeal, replacement, or modification."  This is our opportunity to send in comments to modify the Related Services regulation by adding Intervener Services to that list (“CFR Title 34, Subtitle III, Chapter III, Part 300, Subpart A, §300.34 Related Service)."  Source: personal email.

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I request a modification of the regulations to include Intervener Services on the list of Related Services.  Trained interveners are difference-makers for DeafBlind children no matter what the children's ages are or skills and language they have. They are able to adapt to work WITH the child and not FOR the child, they seek out opportunities for the child to access and make connections with things, people and the environment, they are responsible for the child's social and emotional development.  

Yes, education of DeafBlind children is a very young field. Even with early DeafBlind people, Laura Bridgman (b. 1829) and Helen Keller (b. 1880) (www.perkins.org), it is still new compared to public education and Deaf Education. In the short time this field has grown, knowledge and skills, for which there are currently Council for Exceptional Children standards (CEC link below), in interveners have proven time and time again it is a best practice in the education of DeafBlind children.  

My 7 year-old DeafBlind son, Orion, is one of these students fortunate to have been assigned interveners over the years, his first one was when he was 3 years old.  It was at that school and the first time for Orion, the IEP team voluntarily listed intervener services, which he received 1875 minutes of per week, under Related Services in his IEP document.  With the support of personnel skilled and experienced with DeafBlind children, including interveners, Orion is walking more, drinking via straw, making choices when offered, making progress with requesting things or actions of other people. Most important of all, Orion is happier on these school days where he can understand what's happening and has been "heard" by competent people who understand him.

Unfortunately this is not true for all DeafBlind children during the critical early years of their life. Caregivers, one-on-one aides, nurses, volunteers who are not trained or experienced in this field do not reach the level of efficiency in schools that interveners bring.  

The good news is that there are training resources available, some are online resources and online training programs through a few universities.  One of them is a 27-module online resource developed by the National Center on DeafBlindness, funded by the Office of Special Education Programs called Open Hands, Open Access Intervener Modules (OHOA).  There is national intervener certification available through NICE (National Intervener Certification E-Portfolio) that is based on the CEC intervener skills and knowledge standards.

By modifying the Related Services list to include Intervener Services, it opens the door to educate, empower and enable our early intervention, K-12 professionals and particularly DeafBlind children to successfully access education currently offered to all the children in our country.

References

Open Hands, Open Access Intervener Modules. National Center on DeafBlindness. http://moodle.nationaldb.org. Retrieved online August 2017.

Specialty Set: Special Education Paraeducator Intervener for Individuals With Deafblindness (PDBI). Council for Exceptional Children. https://cec.sped.org/~/media/Files/Standards/Paraeducator%20Sets/Specialty%20Set%20%20%20Special%20Education%20Paraeducator%20Intervener%20for%20Individuals%20With%20Deafblindness%20PDBI.pdf. Retrieved online August 2017.

What is NICE? National Center on DeafBlindness. https://nationaldb.org/pages/show/national-intervener-certification-e-portfolio-nice/what-is-nice. Retrieved online August 2017.

We Need to Foster the Growth of Meaningful and Effective DeafBlind Education in the United States

Orion lovingly hugs his mom's hand.
(Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.)

If you’ve met one child who is DeafBlind, you’ve met just one DeafBlind child.  The number of DeafBlind kids in the United States is so small, since it’s a low-incidence disability. In 2014, there were 9,133 children from birth to 21 identified as DeafBlind, https://nationaldb.org/childcount.  My son Orion is one of the 1,709 DeafBlind children from birth to 5 years old counted in 2014.  DeafBlind children are also diverse due to additional disabilities, family background, communication needs and growth, levels of deafness, how they use their vision, if any, and how they move through their environment.  Many were born DeafBlind and many became DeafBlind before or after language acquisition and concept development, or later in their K-12 educational years.  Most importantly, DeafBlind kids have their own personalities and favorite things to do!  Check out my blog, “A Mom’s Musings”, at http://hexwit.blogspot.com for stories and videos of nearly 6 year old Orion, our family, and links to online resources and information that I found extremely helpful. You can also find Orion and other inspiring children on social media with hashtag searches for #DeafBlindKids, #DeafBlind.

There are DeafBlind Projects serving each state, providing technical assistance in the classrooms and in family homes, workshops, training, networking with other families and resources.  Find your state’s DeafBlind project as well as pretty much anything else “DeafBlind" by visiting the National Center on DeafBlindness’ (NCDB) website,  https://nationaldb.org  Finding my state’s DeafBlind project was one of the first things I did… before Orion was born!  On my blog for new parents is a list of items, including early intervention, parent-to-parent connections, communication, playing, etc., to consider for families of DeafBlind children, http://hexwit.blogspot.com/p/for-fellow-parents_19.html 

Many DeafBlind children benefit from #Interveners who are trained in intervention, communication and educational strategies for children with deafblindness.  Interveners can be found in schools, community and home but they aren’t everywhere just yet.  This is just one small part of where the Cogswell-Macy Act will make a difference in the lives of DeafBlind children, by properly identifying and counting DeafBlind children, recognizing and facilitating the growth of qualified personnel, whether they are interveners or teachers.  Photo contributions of many families with DeafBlind children made it possible for me to put together a video in support of Title III, the DeafBlind part, of the Cogswell-Macy Act, https://www.youtube.com/watch?v=wVS3H9Z2FHM 

The biggest concern is that the contents of the Cogswell-Macy Act needs to happen “yesterday”, our future generation of DeafBlind children are being born, celebrating their first or sixth birthdays soon with their parents advocating for what is appropriate for their precious family member.  

With the leadership of the National Center on DeafBlindness, funded by the Office of Special Education Programs (OSEP), leaders, educators, interveners and family members of DeafBlind children and adults worked together on specialized module-creating teams over several years developing Open Hands, Open Access (OHOA) DeafBlind Intervener Modules.  You can visit the website at   http://moodle.nationaldb.org. The are currently 18 OHOA modules available with the final group of modules being field-tested right now and they will be revealed in the not-too-distant future.

You don’t need sight nor sound to inspire other people, that’s the gift our children are giving us and the world.  We need to give back to our DeafBlind children by the way of appropriate and meaningful education- we need to pass the Cogswell-Macy Act which has been introduced in the House as #HR3535 but not yet at all in the Senate. To pass an act of Congress is no small feat! 

In the midst of advocating you still can make a difference by supporting the growth of interveners and Teachers of DeafBlind (TDB).  Officially, TDBs are still very new that, at least in Texas where my family lives, there isn’t state certification offered yet like there are for Deaf education, blind and special education, and so on.  However, the passion for teaching DeafBlind children have been around for years!  Yes, to families there doesn’t seem like there are enough of them. We can help meet this need by the way of scholarships, planning on training, convincing our local college or university to offer certificates or degrees in deafblindness as interveners or teachers!  Or even start working in this rewarding field ourselves!

I want to thank each single person, wherever on this planet they are, who stumbled into or sought out the field of educating DeafBlind infants, children and youth. Thank You from the depths of my heart!

No, My Dog Didn't Eat My Keyboard: My Excuse For Not Blogging Lately

Orion and Dad swings away at the Lady Bird Johnson Wildflower Center, Austin, TX.

My mind has been brimming with continuous feed of newfound knowledge, realizations, discoveries, developments that's been keeping me away from blogging lately.

What's the inspiration?  Deafblind Intervener information!  I was invited to test some Open Hands, Open Access (OHOA) online modules that were developed for intervener training (not available nationwide yet, still in development). From the modules I've been a "student" in, I picked up increased awareness and skills I can use with Orion.

I can tell you right now Orion LOVES affirmation. Affirmation is letting him know I see what he's doing, I recognize his actions, basically by copying what he does.  He laughs, he smiles in response… we're having experiences together. I could go on and on about the other things I've been enlightened with. Another day!

In addition to testing, I am also so honored to be a contributor in one of the upcoming modules as a parent of a deafblind child.  The contributors are teachers (of the Deaf/HH and/or Vision), interveners, state outreach specialists, parents and so on.  I am learning so much from my module buddies!

You can read a little more about the OHOA modules at: https://nationaldb.org/library/page/2269

You can watch an upcoming webinar, "Looking to the Future of Deaf-Blind Services and the Role of Interveners", (February 12, 2014 at 3 pm).  You don't need to register to participate.  It will be captioned and recorded.  To link to the webinar, visit https://nationaldb.org/events/detail/0/187

Life isn't all rosy, yes, I'll take life with the pits and stray bones… I am so thankful for things to be motivated about.  Orion is growing up, his communication is developing slowly but truly, I'm tuned-in better on his movements.  I'm puzzled more because I recognize meaningful movements and need to figure them out.  I know what to watch for now and how to respond to Orion when he makes certain movements.  I feel empowered and able to elaborate interactions with Orion and his environment.  (It takes a village to raise a Deafblind child.  His teacher and intervener at school are doing their part, too.)