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Summer 2018

Excerpts from the website: National Center on Deaf-Blindness https://nationaldb.org/

This framework offers state deaf-blind projects a collection of online resources that they can use to provide customized training and technical assistance to early intervention providers as well as to project staff and families. It focuses on the identification of children with combined vision and hearing loss, key instructional strategies, and the developmental domains used by early interventionists.

https://nationaldb.org/products/ei-framework

Megan Rech, Research Coordinator, Baylor College of Medicine

Abstract: Ms. Rech shares an overview of the BBSOAS Family Conference that was held in Houston in April.

Keywords: Boonstra-Schaaf Optic Atrophy Syndrome, BBSOAS, cortical visual impairment, optic atrophy, visual impairment, Texas School for the Blind and Visually Impaired Outreach (TSBVI)

Photograph of Dr. Christian Schaaf.The inaugural Bosch-Boonstra-Schaaf Optic Atrophy Syndrome (BBSOAS) Family Conference was held in Houston, Texas on April 27th and 28th. BBSOAS is a rare neurological disorder caused by a disruption in the NR2F1 gene on chromosome 5. The syndrome is characterized by a wide array of clinical features, but the most common are developmental delay, intellectual disability, low muscle tone (hypotonia) at birth, and vision impairment caused by a small and pale optic nerve and/or cortical visual impairment (CVI). There are currently about 55 known cases of BBSOAS worldwide. Though there is presently no cure for BBSOAS, with early intervention and proper management, much can be done to improve the quality of life of those affected.

The purpose of the conference was not only to provide education through presentations from leading researchers and medical professionals, but also to promote community-building by facilitating opportunities for families to get to know and learn from each other.

The conference was hosted by the lab of Dr. Christian Schaaf, a Professor for Clinical Genomics and the Medical Director of Clinical Genetics at the University of Cologne in Germany and Visiting Professor at Baylor College of Medicine and the Jan and Dan Duncan Neurological Research Institute in Houston. In addition to Dr. Schaaf, several other collaborators and experts shared their knowledge with families.

Photograph of Dr. Danielle BoschDr. Danielle Bosch (UMC Utrecht, photo right), together with Dr. Schaaf, presented on the clinical features of BBSOAS, while Dr. Fred Pereira (Baylor College of Medicine) spoke about the molecular aspects of the syndrome.

The conference also highlighted vision research, with a presentation from TSBVI Outreach Consultants Sara Kitchen and Lynne McAlister on supporting children with CVI, and a talk from Dr. Jane Edmond on the causes of visual impairment in the syndrome. Dr. Edmond is the Director of the Mitchel and Shannon Wong Eye Institute and Professor and Inaugural Chair of the Department of Ophthalmology at the Dell Medical School at the University of Texas at Austin, and she is also an Adjunct Professor in the Department of Ophthalmology at Baylor College of Medicine. In addition, special guest Dr. Ana Treviño-Godfrey (Director of Prelude Music Classes for Children) facilitated a music activity for the group.

As part of the event, families also had an opportunity to be examined by Dr. Edmond or Dr. Veeral Shah, a pediatric neuro-ophthalmologist at Texas Children’s Hospital, as well as to meet one-on-one with Dr. Schaaf. While the focus of these visits was to answer families’ questions, the hope is that findings from these visits will lead to a more comprehensive characterization of the syndrome.

All in all, 27 families, or about 100 people, traveled to Houston for the conference.

To learn more about BBSOAS, please visit https://www.bcm.edu/research/labs/christian-schaaf/nr2f1.

Kevin Markel, Program Specialist for Pre-ETS, Texas Workforce Commission

Abstract: In this article, Mr. Markel discusses work-based learning and the impact it can have on the post-secondary education and business success of an individual with a disability.

Keywords: Vocational Rehabilitation, disability, Texas Workforce Commission, Workforce Innovation and Opportunity Act, pre-employment transition services, work-based learning, Summer Earn and Learn, WACO, SWEEP, SWEAT, WALIC.

For students with disabilities and their families, achieving meaningful, long-term employment is one of the primary goals for post-school life. This goal is also shared by the education and vocational rehabilitation professionals who partner with them.

The Workforce Innovation and Opportunity Act (WIOA) requires vocational rehabilitation programs, such as the Texas Workforce Commission Vocational Rehabilitation program (TWC-VR), to provide pre-employment transition services (Pre-ETS) to students with disabilities to better prepare them for a successful transition from secondary education to postsecondary education and employment. Pre-ETS activities include five services: work-based learning, counseling on post-secondary education, career exploration, workplace readiness and self-advocacy. This article will focus on work-based learning. Future articles will provide additional information on each of the other Pre-ETS required areas.

While all of the required Pre-ETS areas are important and instrumental for transitioning students with disabilities, there is an additional emphasis on the provision of work-based learning opportunities. There are numerous studies, including longitudinal studies, that point to the positive relationship between work-based learning experiences during secondary education and successful post-school employment.

Work-based learning is an instructional approach that uses the workplace or real work experiences to provide students with the knowledge and skills that will help them connect school experiences to real-life work activities and future career opportunities. It is essential that direct employer or community involvement, within an integrative setting, be a component of the experience to ensure student engagement and assist in the learning process. Work-based learning experiences vary and are tailored to the student’s needs. These activities include:

  • Job Shadowing
  • Career Mentorship
  • Informational Interviews
  • Service Learning
  • Simulated Workplace Experience
  • Paid and Non-Paid Work Experience
  • Volunteering, and
  • Internship or pre-apprenticeship experiences

In January 2017, TWC approved the Pathways to Careers Initiative to expand opportunities for Texas students with disabilities to receive Pre-ETS. This initiative compliments and advances the Tri-Agency initiative by TWC, the Texas Higher Education Coordinating Board and the Texas Education Agency (TEA), which emphasizes the importance of applied learning opportunities. These opportunities may be through internships and work experiences, ensuring that students have better information about career pathways to promote informed choices and increase the number of Texas students who complete a postsecondary degree or credential. One of these TWC work-based learning initiatives is called Summer Earn and Learn (SEAL), which is conducted in partnership with Local Workforce Development Boards (Boards) and their employer partners. SEAL combines essential employability skills training and paid work experience for students with disabilities. SEAL is offered across the state in each Board area during the summer months, for at least five weeks, when students are typically out of school. Through this program, students experience a real work environment, receive a paycheck, and learn valuable interpersonal and transferable skills that prepare them for their future success.

In its inaugural summer of 2017, the SEAL program assisted more than 1,500 students with disabilities with employability skills training and paid work experiences with a variety of Texas employers. TWC anticipates at least 2,500 students with disabilities will participate in SEAL in 2018.

Other summer work-based learning opportunities that have historically been available for students who are blind or visually impaired will also continue this summer. Those activities include SWEEP in Lubbock, the WACO Project at Texas A&M, and the SWEAT / WALIC programs at Texas School for the Blind and Visually Impaired (TSBVI).

On a personal note, as an individual who is visually impaired, I can point to the positive impact and integral role that summer jobs played in my readiness to face the world of work. Through these summer opportunities in high school and college, I had the opportunity to practice self-disclosure about my disability, understand how self-disclosure impacts my functioning, and determine which assistive devices and aids allowed me to complete certain tasks best. These opportunities also afforded me the chance to gain invaluable information on the type of work that I enjoyed and the type of work I did not enjoy, so I could make better informed career decisions during and after post-secondary training. For these reasons, and many others, we encourage students and their families to discuss the possibilities of work-based learning opportunities with their respective TWC-VR counselor.

Veronica Lewis, Writer/blogger at Veronica with Four Eyes, Excerpts from https://veroniiiica.com

Abstract: Ms. Lewis reviews 5 websites that provides information and resources that shares information about vision impairments with children.

Keywords: blind, visual impairment, braille, low vision,
https://veroniiiica.com/2018/01/19/five-websites-that-teach-kids-about-vision-impairments/

As more and more students are diagnosed with vision impairments, kids naturally become curious about what vision impairments are and how people live with them (read more about how I answer questions children ask about my low vision here: https://veroniiiica.com/2017/08/28/answering-strangers-questions-children-edition/). Luckily, there are many kid-friendly resources online that teach about Braille, blindness, low vision, and more. In honor of National Braille month, here are five websites that teach kids about vision impairments, including blindness and low vision. These websites are targeted at sighted kids but are also great for curious kids with vision impairment.

  • You’ve Got Braille
    You’ve Got Braille is a resource on PBS Kids that teaches young children about Braille using characters from the show Arthur. A character named Marina has a page where she talks about life with blindness and educates readers on basic adaptations such as listening to books (read more about listening to books on Amazon Alexa here), reading large print (read more about Bookshare, an accessible library here), and using screen readers. There’s also a Braille translator. I love that this website is inclusive of low vision and has current information too. Check out the website for You’ve Got Braille here (http://pbskids.org/arthur/print/braille/).
  • Braille Bug
    Braille Bug is an interactive resource created by the American Foundation for the Blind. On the website, kids learn about color contrast (read my post on colored backgrounds here), Louis Braille, Helen Keller, different types of Braille including music (read more about how to make music accessible for low vision here), and also has games and activities. I had a lot of fun exploring the website, especially the Louis Braille virtual museum. Check out the website for Braille Bug here (http://braillebug.afb.org/).
  • SeeNow Vision Simulator
    SeeNow Vision Simulator was developed to teach people about navigating with a vision impairment by seeing what locations look like through the eyes of someone with uncorrectable vision loss. I used it to explain to someone why I find it difficult to navigate an area near my college and show them how it looked to me- read more about navigating college campuses here. There is also an app available, but I have not tested it. Check out the website for SeeNow Vision Simulator here (https://simulator.seenow.org/).
  • Kids Quest: Vision Impairment
    Kids Quest: Vision Impairment is a resource developed by the Center for Disease Control. The website challenges assumptions kids may have about vision impairment and teaches them about assistive technology (read five myths about assistive technology here) as well as encourages them to research information on outside websites. There’s even a section on famous people with vision loss- read my post on Buddy Holly and how he helped make glasses cool here. This website can answer most questions someone could have about vision loss. I recommend it for older kids, age 10 and above. Check out the website for Kids Quest: Vision Impairment here (https://www.cdc.gov/ncbddd/kids/vision.html).
  • WonderBaby
    While this website isn’t technically directed at kids, WonderBaby is a website curated by Perkins School for the Blind about raising children that have vision impairments and multiple disabilities. There's a lot of great projects, information and tips featured, and my mom has said she wished this website existed when I was younger because it would have been really useful. Check out the website for WonderBaby at (http://www.wonderbaby.org/).

By encouraging kids to learn more about living with vision impairment, inclusive and accessible spaces can be created and flourish. After all, kids with blindness and low vision aren’t much different than other kids, which I mention in my myths about IEP students post here (https://veroniiiica.com/2017/10/30/seven-myths-about-iep-students/) – they just see things a little differently.

Keisha Rowe, Director, Office of Independence Services Health and Human Services Commission

Abstract: This article outlines the program services provided by the Rehabilitative and Independence Services section of HHSC.

Keywords: HHSC, services, disabilities

The Blind Children’s Program is part of the Texas Health and Human Services system, which is dedicated to helping millions of people each year. For people who need medical care, food for their children, dignified care in a nursing home or an assisted living facility, or independent living resources – HHS is ready to help.

More than 3.4 million Texans have a disability. HHS programs offer an array of services to meet the needs of people with disabilities, including providing guidance and referral expertise to a family whose child was just diagnosed with a disability; helping people find and secure independent housing; working with community partners to create jobs; and locating service providers who provide in-home care in order to help keep people out of institutions.

HHS’s Health, Developmental and Independence Services programs offer information and support in the following areas:

  • Acquired brain injury
  • Autism
  • Blindness and visual impairment
  • Comprehensive rehabilitation services
  • Deaf and hard of hearing services
  • Early childhood intervention
  • Employment services
  • How to pay for services
  • Intellectual or developmental disabilities– long-term care
  • Medical or physical disabilities
  • Person-centered planning
  • Service coordination

HDIS’s Rehabilitative and Independence Services is home to numerous programs to Texans with disabilities.

Blind Children’s Program

The Blind Children’s Vocational Discovery and Development Program helps people 22 and younger who are blind or severely visually impaired learn the skills required for personal independence, potential employment and integration into their community. BCP’s comprehensive habilitative services enhance children’s ability to develop skills comparable to those of their sighted peers. It also helps children achieve financial self-sufficiency as adults. Blind Children Program’s specialists serve a dual role as case managers and direct service providers.

Blindness Education, Screening and Treatment Program

Blindness Education, Screening and Treatment services reduce the incidence of blindness throughout Texas. The program encourages people to protect their eyesight by seeking professional care if they are at risk for potentially serious eye conditions. The program provides medical treatment to people without health insurance, helping to prevent blindness. The BEST program contracts with the agency Prevent Blindness for screening services and collaborates with ophthalmologists for treatment services.

Comprehensive Rehabilitation Services

The Comprehensive Rehabilitation Services program fills a service gap for intensive rehabilitation services for people who have sustained a traumatic brain injury, traumatic spinal cord injury or both. The program helps people live independently in their homes and communities. It focuses on three main areas that affect both function and quality of life:

  • Mobility 
  • Self-care
  • Communication skills

Services are provided in the consumer’s home, a hospital, a residential facility, an outpatient clinic or in a combination of settings to encourage the maximum flexibility in service and independence. Depending on the person’s needs, different program services are available, such as in-patient comprehensive medical rehabilitation services, post-acute rehabilitation services -- both residential and non-residential -- and outpatient therapies and supports.

Deaf and Hard of Hearing Services

Deaf and Hard of Hearing Services oversees and manages 11 programs that advance opportunities for people who are deaf and hard of hearing. These programs reduce societal and communication barriers to ensure full and equal opportunity to participate in public life. The program also raises public awareness of the needs of people who are deaf or hard of hearing, as well as the development and coordination of programs, policies and regulations.

Guardianship Services Program

The Guardianship Services Program serves adults with diminished capacity who are substantially unable to provide for themselves and have been referred by the Department of Family and Protective Services. It also serves youth moving out of DFPS conservatorship. HHSC is appointed guardian of people affected by abuse, neglect, self-neglect and/or exploitation.

For adults to be referred by DFPS for guardianship, they must either have a disability or be 65 or older and have been abused, neglected or exploited. For youth moving out of conservatorship, they must be in CPS conservatorship and appear to meet the adult definition of incapacity.

Independent Living Services

The Independent Living Services program enhances the quality of life of people with significant disabilities, including those who are blind or visually impaired. It promotes independence in the home and community and provides access to rehabilitative services and supports. The program places special emphasis on helping people accomplish daily tasks independently; participate in their favorite activities; improve communication and transportation access and mobility; gain a better understanding of their disability; and increase their self-confidence, access to the community and participation in society.

Surrogate Decision-making Program

The Surrogate Decision-making Program authorizes family members and surrogate consent committees to provide written informed consent for people who receive community-based services, lack the capacity to make treatment decisions for themselves and have no legal guardian. This consent applies to the areas of major medical treatment, major dental treatment, use of psychoactive medication and use of highly-restrictive procedures. Volunteers make decisions for people who are living in community-based intermediate care facilities for people with intellectual disabilities or related conditions.

To learn more about these and other programs offered at HHSC, please visit the HHSC website at: https://hhs.texas.gov/