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Conversations that matter : Transition Recommendations (final) drop in call


 Greetings !

We are excited about the transition initiative that that focuses on young adults who have additional disabilities and comprise the majority of the population on the national census. The things we know about the outcomes for young adults who seek employment , community living and a better quality of life could be much better. Your state has a system that we could improve outcomes if we found ways to engage them. There are some of you who have had some success doing so and others grappling where to start. Ellen and I are asking that you join us and consider the type of engagement you would like as it relates to these transition recommendations.

You do not need to have had participated in any of the recommendations although it would be helpful if you took some time to peruse through them as you think about your state. Ellen led us on discussions through each of the recommendations and has positioned us nicely for some good conversation at the upcoming drop in call. Ellen  who works with me on this initiative brings both her perspective as the Montana DB project Director and her knowledge and expertise in Transition and Customized Employment for people with significant disabilities. Ellen has worked in the field of developmental disabilities since 1986 and prior to coming to Montana her experiences included direct services , program development and program management in community residential and supported employment programs. 

We look forward to learning together


Mike Fagbemi

Posted 29 Days Ago by Mike Fagbemi

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Comments (7)

Yes! Capturing information in a visual format can be very helpful to the Employment Specialist. I agree - having work experience with the successes and challenges that occur when one is learning new skills can be very useful for assessing future employment options. For example - we are working with an employment specialist for my daughter and her Vocational Transition Portfolio that includes her work experience from school along with her likes/dislikes and PICTURES of her doing work - has been very helpful in her current employment process. My daughter is the first person with deaf-blindness that this employment specialist has worked with and while she's familiar with the concept of customized employment (I was happy to learn that!), it's still a challenge to execute the process. Having info on current connections with people and agencies has been helpful, too as we get ready to send out her resume and cover letter. Having links to stories and videos through a network of families and organizations (like NFADB, CHARGE, HKNC, NCDB) can help families in this process learn about the possibilities available to their young adult.

Sheri Stanger

Posted 6 Days Ago by Sheri Stanger

Cheri I love your idea about a network of parents who share their successes and challenges around preparing their young adult children for Transition and navigating that adult system. The video clips of Rowena's son is a great example of a one strategy that can be used to capture information about tasks a young adult can do, interests and preferences, and support strategies that are effective for that young person. The short video clips are a great way to share that information with adult service agencies and personnel who are just meeting that young adult. I think a lot of Vocational Rehabilitation counselors haven't had a lot of experience yet with students with multiple disabilities including deaf-blindness. They may not have the tools and skills yet to be able to envision the possibilities of competitive integrated employment through a customized employment approach for these students. If each student with DB and additional disabilities had work experiences while in school to enable their team to identify: tasks they could do, strategies to support them during work, and their ideal conditions for success, AND that information could be captured and shared with vocational rehabilitation and adult agencies who will provide long term supports we would see better post school outcomes for these students.

Ellen Condon

Posted 10 Days Ago by Ellen Condon

I mentioned this on the Transitions Recommendations call earlier this week, but we put together a Video Resume Portfolio for our deaf-blind son. This has been a helpful tool in navigating VR. Instead of starting at ground zero with VR, this portfolio demonstrates job skills he has already gained... so in effect it should potentially reduce some of the learning curve for VR. It is of my opinion that it is helpful for VR to have a actually see some of his capabilities and potential first hand. They aren't just hearing someone say what he is capable of...they are actually seeing the proof. Some of these video clips were made during my son's DB Immersion Experience at Helen Keller and some have been made with his Intervener at school. I believe he currently has about 22 video clips on his Youtube channel, and we intend to continually add new clips to it as he gains and masters new skills. We discovered that my son would stay atuned to a task and perform it fully and to completion if we incorporated counting while he was doing it. Counting was the essential ingredient to every task he was asked to do...even those he wasn't particularly fond of doing. He loves numbers and counting! You will hear counting in most of the video clips. It serves as a motivator and conduit to help my son maintain the task from start to finish. I am sure there is a motivating ingredient for every child! The link to the Video Resume Portfolio is:
I have often felt that my son and his complexities are extremely intimidating for a VR counselor, but I do feel that these video clips have been beneficial in lowering that intimidation level. I believe it is necessary to be creative and think outside of the box to make some inroads in these areas.

Rowena Barker

Posted 22 Days Ago by Rowena Barker

Hi Ellen. You hit the nail on the head! It's very true we often hear what our kids cannot do during IEPs and school team meetings. And with adult service eligibility you have to make your adult child seem like they can't do anything on their own. But then the VR agencies want to know about levels of independence and what they can do and can they do it without supports in place. Parents need to change course in their thinking in order to focus on person centered planning and life planning with their child's likes/dislikes/competencies, etc etc. And the VR agencies need to be a part of the process during the Transition phase while the student is still in school. When our kids are young we are looking for support from other parents but it's also critical at the adult stage of life. That information isn't readily handed out to parents - where can they work, where can they live, where can they go for recreation. There needs to be a network of parents that share their stories - successes/failures and all! What can work look like for an adult with deaf-blindness with additional disabilities? Parents need to see that there isn't just one formula that fits all. And of course, learning to navigate the system is critical. Who are the support people that can assist with that process and what are the step by step directions to obtain support through the VR system. It's not spelled out anywhere. Many times we don't know what to expect or what the VR system is looking for or how to explain that our adult children will need ongoing support due to their deaf-blindness but that doesn't mean they can't be gainfully employed. I'm thinking and typing at the same time here, in case you didn't realize that yet ;) But your questions are certainly food for thought. The skills parents use to be persistent during the school years will be even more critical as their child enters adulthood and eligibility based programs.

Sheri Stanger

Posted 24 Days Ago by Sheri Stanger

Thank you for sharing! I totally agree that parents hear quite often what their children can NOT do and then during the transition years when they are completing eligibility determination for Developmental Disabilities and Social Security they are having to accent deficits to access those systems. What type of resources or information would be helpful for families to show them what is possible for adult life options? and what would be helpful in terms of navigating VR for support?

Ellen Condon

Posted 25 Days Ago by Ellen Condon

I'm not with a state deaf-blind project; however, I am the Director of Outreach for the CHARGE Syndrome Foundation and also a parent of a 25 year old daughter with CHARGE syndrome. So I'm talking from personal experience with my daughter who is currently working on SEMP. I'm a parent supposedly "in the know" and we have struggled immensely with employment and voc rehab. I believe that parent expectations for their child are often high but rather the expectations from the Adult Voc Rehab community are extremely low or non existent. Over many years parents are led to believe their child cannot make a positive impact on society via employment. It can wear you down. We're told their impact will come in different ways such as teaching tolerance and respect for differences. While this is all well and good, we as parents want more for our adult kids. Many don't believe people with deaf-blindness with additional disabilities are SEMP material because they will always need some form of support in place (job coach typically leaves around 3 months into employment). It's a constant struggle to get the voc rehab agencies and then the agencies that provide the direct service for SEMP on board. I believe a lot of work needs to be done with collaboration across agencies. Many Voc Rehab agencies such as the NY State Commission for the Blind (which is the agency I am working with) have very "old school" thinking. They don't think outside the box and are not yet aware of Customized Employment or that other supports can be used within the work environment such as Interveners and Community Habilitation Staff. And certainly, families need the education to know that there are options available to them beyond traditional Day Hab programs for their adult child. The issue of double dipping when it comes to billing for services needs to be changed at a systems level. As a parent, you often don't know about these issues until you are immersed in them. There are so many other struggles that require our attention. Anyway, saw this post and wanted to add my thoughts from being currently immersed in the process.

Sheri Stanger

Posted 26 Days Ago by Sheri Stanger

When we collected information for the Recommendations to Improve Transition Outcomes for Students with Deaf-Blindness and Additional Disabilities we found that the expectations for this population were very low. Few students were expected to work in the community, live outside their parents’ homes, or have a full life after graduation. Most of these students were not connected to vocational rehabilitation during school or after, nor do they have community-based work experiences or paid employment while in school. It appeared that many parents and guardians did not believe their child was capable of working or expected them to work and be contributing members of their communities.
Changes in national laws beginning in 2014, and the evolution of state policies and practices related to transition and community life, including employment, for young adults with disabilities, has opened a window for students with deaf-blindness and additional disabilities to experience better adult lives.
The purpose of the Recommendations document is to inform and support the Deaf-Blind Technical Assistance Network to become knowledgeable about new legislation, resources, and practices in their states that will enable them to provide high-quality technical assistance to state education agencies, local education agencies, families, developmental disabilities services, vocational rehabilitation services, and community rehabilitation providers on behalf of students with deaf-blindness and additional disabilities.
Join us on Wednesday May 22nd to discuss how your state project can partner with NCDB to explore strategies to:
• Raise the bar about what is possible for transition outcomes;
• Ensure these students have access to quality transition activities that prepare them for work and adult life in the community;
• Build capacity of professionals at the school and adult service agency level to provide quality employment services for students with DB and additional disabilities;
• Promote collaborative funding and service provision across schools and adult agencies; and
• Educate and empower families to enable then to advocate for their child and be a voice in their state for improved transition outcomes.

What are you struggling with in your state around transition for students with deaf-blindness and additional disabilities?

Ellen Condon

Posted 27 Days Ago by Ellen Condon

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