Fetal Alcohol Spectrum Awareness
My completed project includes three parts. The 100 emails, the flyer for the training and the link to 100 mental health providers in VA who serve children and youth with a trauma background.
1) 100 emails were sent to mental health providers in VA along with this survey. (link to survey in email). All providers were vetted as ones who provide mental health services to either children, youth or both.
2) Flyer with invitation to Center for Family Involvement for FASD training and awareness on May 23rd. QR code will be included on the flyer once Proof Alliance sends a Zoom invite for the training.
3) Link to spreadsheet to be given to Formed Families Forward for the purpose of serving families in kinship and foster care living with FASD. Searched through over 1000 mental health providers to find 100 in VA that serve children/youth with a trauma background (all children living in kinship/foster/adoptive care experience trauma). Additionally, I included competencies from our training at LEND with providers that serve culturally diverse families and children with disabilities.
I used the website: https://www.psychologytoday.com/us/therapists/virginia/a
I reached out to multiple mental health organizations in VA for a comprehensive list of providers and they were all in agreement that it was difficult to find one. When I came across Psychology Today I asked Dr Henderson if FFF would be OK with this list since I could not find another and she agreed that this list would be acceptable.
I went through the providers alphabetically and looked at their trauma background, ability to treat children/youth/families and looked at other indicators such as military experience, LGBTQ experience, cultural experience, bilingual, and of course experience in adoption/foster and kinship care as well as disability.
All providers on the list see either children, youth or both and are coded by their services. This allows families to choose what provider serves their interests best. I will be sharing this list with Formed Families Forward and the FASD stake-holders group at their next monthly meeting. My intention is to take this data and turn it into a Data Visualization in Tableau so that it can be included in a more user-friendly format for families on a future website. I was not successful in finding any providers that claimed to be FASD informed but hopefully this list will help families living with FASD to find a mental health provider that serves children with a trauma background in kinship/foster and adoptive care. If I included a provider that was not trained in trauma care it was only because their knowledge of disability was so extensive I felt like they should be added to the list. I started to include insurance about a third of the way through but was unable to determine if they took Medicaid or Private. I answered yes if they indicated they took insurance but it will be up to the family to determine if the provider they choose takes their particular insurance.
Shared Visions: Understanding the IEP Meeting From Both Sides
I collaborated with the Center for Family Involvement to develop the project and then I developed a questionnaire to use when interviewing educators and parents. I analyzed the information from the interviews and created themes and a transcript and then collaborated to support video creation of multiple short videos (reels).
Neurodiversity 101
Neurodiversity has several definitions and throughout our presentation, we acknowledge these definitions as it pertains to healthcare, while we also recognize neurodiversity as an identity. We hope to recognize and celebrate neurodiversity while also highlighting the unique strengths and challenges they may experience. Some neurodiversity conditions have genetic etiology, for which we present the role of genetic professionals and provide examples of the intersectionality of neurodiversity and genetic conditions. The journey to diagnose neurodivergent conditions can be complex and lengthy, often involving a diagnostic odyssey that spans years and multiple healthcare providers. Understanding neurodiversity is crucial for medical providers to offer accurate diagnoses, tailored treatments, and compassionate care that respects the diverse needs and experiences of neurodivergent individuals.
We chose this project because we wanted to bring awareness to the unique experiences of those who are neurodiverse and highlight why healthcare providers play a crucial role in their overall care. Specifically, it is crucial to educate future healthcare professionals about neurodiversity, particularly in the context of a pediatric setting, to ensure they can provide informed and inclusive care. Understanding neurodiversity helps healthcare providers recognize and respect the unique needs and strengths of neurodivergent children, promoting more accurate diagnoses and tailored interventions such as early intervention services. With proper education, healthcare professionals can help reduce the stigma surrounding neurodevelopmental differences, fostering a more supportive and accepting environment for neurodivergent children and their families. Additionally, knowledge about neurodiversity equips healthcare providers to collaborate effectively with multidisciplinary teams, including educators and therapists, to offer holistic care plans that address various aspects of a child's well-being. Ultimately, integrating neurodiversity education into healthcare training enhances the quality of care and promotes better outcomes for neurodivergent children across developmental stages.
Neurodiversity 101 Presentation
Intersectionality of Blindness and Neurodivergence
My project is focused on concerns raised by families as well as youth and young adults who are blind and neurodivergent regarding experiences at training centers as well as the State Rehabilitation Center for the Blind.
My motivation for this project has been a combination of things. Over the past 22 years both as a parent and as a family support specialist working with families who have a loved one who has vision loss, I have observed trends within the blind community. Specifically, with the state department for the blind and with training centers run by blind organizations.
That trend is to exclude students with additional disabilities from their programs. Or when included not allowing for needed support, pushing and shaming students, sometimes causing lasting negative impacts. Personally, my daughter has had repeated encounters with discrimination, harassment and bullying while trying to access programs for the blind.
This project will have two parts. My part was to better understand the concerns raised, research and establish focus groups with youth and young adults who are blind and are neurodivergent. As a result of these discussions, we have established monthly community of support meetings, which will enable youth to have a safe space, feel a sense of community, share their lived experiences and decide on topics that they identify as areas of need to raise awareness.
My daughter Kim and a fellow LEND trainee will be doing the second part which is to continue the community of support, create a video series presented by youth with lived experiences and based on what is identified as being areas of need and resources.
It was really helpful to be able to identify actual studies and reports supporting some of the observations I have had. One thing that is commonly understood in the blindness community is that the majority of students who are blind or visually impaired have additional disabilities. Another is what the blind community often referred to as “blindisms” but what others know as neurodivergent traits.
I was highly discouraged by professionals in the blindness fields from seeking an autism evaluation for my daughter when she was younger. So I was thrilled to see that there have been some studies. The most recent shows that there is a close relationship between autism and congenital visual impairments. (Pili R, 2021)
Another area of observation has been how difficult it is to get accurate numbers of students who are blind or visually impaired. Schools report students based on their primary disability. So, for example if a student is identified as deafblind or having multiple disabilities then they are not going to show up in the data counts, even if they have a visual impairment as well. Data from schools and state departments are showing vastly different numbers. But even then, most information consistently says that over 50% and up to 75% of children with visual impairments have additional disabilities. (Schles, 2021) (Silberman, 2000) (Virginia Department of Education, 2017) Yet we are not seeing these numbers receiving services from our VR agencies!
So if we know that possibly between 50-75% of students have additional disabilities then why are Virginia's VR agency’s numbers so low? I have observed over the last 22 years how our state department for the blind excludes students with additional support needs from many of their programs. This has significantly limited, almost to the point of complete exclusion, the ability of the largest population of students who are blind from accessing pre-ets and vocational rehab programs for the blind.
In a 2020 study on the Overview of Vocational Rehabilitation Data about People with Visual Impairments it was noted that Virginia has the lowest rates of clients with additional impairments other than vision loss. It also noted that the priority of disabling conditions qualifying the participant for services that the people labeled as having the most significant disability was very small – 6.8%. (C. M. Clapp, 2020) when 50-75% of our community has additional disabilities. But only 6.8% are being served.
The Study also mentioned how the agencies are pressured to show good ROI with the clients they serve. So, could this be why DBVI is so selective, to enable them to show higher success rates? But where does that leave our students who could benefit the most from Pre-ets and VR programs?
While researching I took a look at the latest applications for students at Virginia’s Department for the Blind. In the past staff would select who they sent information to about programs being offered. Now that information is more easily shared they are screening applicants using detailed applications for their pre-ets programs. (Impaired D. f., 2024)The VR LIFE program, which is a 4 week Residential program for youth, specifically states that all applicants must be independent in all self care. (Impaired V. R., 2024)
The state Rehabilitation Center for the Blind is supposed to help teach blindness skills and advocacy, yet they discourage personal choice and rely on strict methods for everyone in the instruction process.
Families and students share that they are inflexible regarding the attendance for the residential program. And not allowed to bring a PCA, must be independent in all self care and medications.
Additionally all students are forced to use a NFB cane, and wear sleep shades for all instructional activities. This includes O&M, which involves learning to orient and navigate the building, sidewalks and streets, cooking, grilling and much more.
Families and students report that the use of structured discovery methods have been frustrating and make them feel like failures when they can’t figure something out. (Board, 2008-2024) Some have reported having panic attacks during lessons and that they will spend hours trying to figure out one thing and no one will help them when they request assistance.
Parents have shared these are some of the reasons they decided not to send their child, others have shared that their child was kicked out of the program because he couldn’t handle it. Students have shared that they decided not to go back because of the anxiety and panic they experienced while feeling pushed to do things they were not comfortable with while wearing sleep shades. These similar experiences occur at training centers run by blind organizations around the country.
Another interesting point of observation and reported by parents and students is that they have never received a survey after any event or program. Additionally, noted is there is no complaint or concern link or process posted on their websites. If there is one, it is next to impossible to locate.
To bring everything back together I have shared in the powerpoint a few quotes from our focus group of youth and young adults One that stands out speaks to the double standard of allowing needed support for all as it reads “What would they do if a blindness program said you couldn’t bring your cane? It is no different. A cane is a needed support just like a PCA is a needed support. It is a double standard.” -B.F.
As we continue this project into phase 2 of creating videos, our hopes are that we are only just beginning the conversation. That this will hopefully spearhead a movement of raising awareness, changing attitudes, normalizing neurodiversity within the blind communities and professionals. That this will encourage professional training around true inclusion, neurodiversity, trauma informed care, person centered practices and impact how agencies and organizations support students.
Intersectionality of Blindness and Neurodivergence Presentation
Intersectionality of Blindness and Neurodivergence Accessible Presentation
Christy Harrison: Care Connection for Children
Children and youth with special health care needs CYSHCN provides leadership to the Care Connection for Children (CCC) network across the state of Virginia. CCC supports families and children ages birth to 21 years old who have permanent or semi permanent special health care needs which stems from a diagnosed physical medical need. I chose this project because I wanted to learn more about CYSHCN, how the CCC supports families across the state, and how parents can access these services. As a part of my project, I worked with Marcus Allen and his CCC team, facilitating discussions and supporting the finalization of the scoring of their new intake assessment tool. The purpose of the assessment tool is to support CCC case managers in determining and providing the necessary level of care to meet the family and child's individual needs. Case managers across the state will be able to use this tool while ensuring consistency within the program.
Lisa Richard: Fetal Alcohol Spectrum Awareness
My name is Lisa Richard and I am a VA-LEND Trainee in the Family Discipline. My project FASD Awareness, brings awareness to children and youth living with Fetal Alcohol Spectrum Disorder. This project includes a training for the Center for Family Involvement to become FASD informed. My project product is a list of mental health providers in VA for Formed Families Forward to inform a future online HUB to serve families in VA living with FASD. This list will present mental health providers in VA that serve youth and children with disabilities and a trauma background. This list will also include the providers experience with Cultural Diversity, Anxiety, Depression, Disability, Substance Use, and Kinship/Foster care.
Rebecca Stickler: Learn the Signs: Act Early, Research and Learning
I researched, reviewed, compiled information about how parents and caregivers look for information about the development of their children, participated with stakeholders of Early Childhood systems to discuss how the Learn the Signs Act Early materials can reach families of young children throughout Virginia, and learned with stakeholders how systems are caring for young children across Virginia. I chose my project to familiarize myself with Early Childhood systems impacting families and hope my involvement will raise awareness of how families access developmental information, inform systems to provide a variety of materials to meet diverse needs, and that Early Childhood systems can better screen babies and toddlers early so those who need it can get services through programs like Early Intervention to catch up developmentally with their peers by the time they enter kindergarten.
Taylor Vowell: Recruiting Spanish-Speaking Employees for Early Intervention Services
My initial desire was to find a way to bridge the gap between administration, direct service providers, and families in early intervention settings. I connected with Richmond Behavioral Health Authority's Early Intervention services, and they shared that they have struggled with finding Spanish-speaking or bilingual staff members, and their agency primarily serves Spanish-speaking families.
Why I chose this leadership project: Many families I have worked with in the past have needed more support from an administrative level, whether it be ensuring an agency is following company policies or direct service providers getting the support they need from upper management in order to ensure families get information they need. Many times, it is difficult to assist a family who needs more support in response to a systemic issue such as lack of Spanish-speaking staff on hand or a gap in company policies.
The impact I hope I will achieve: I hope that by meeting with the LCSW on staff at RBHA and HR to share information on recruiting tips would assist the agency in hiring and retaining more bilingual staff members. This agency serves 400+ families with children with disabilities, with most of them being Spanish-speaking, and they currently only have 2 multilingual staff members on hand.
Recruiting Spanish-Speaking Employees for Early Intervention Services PPT
Karli Johansen: Shared Visions: Understanding the IEP Meeting From Both Sides
I collaborated with the Center for Family Involvement to develop the project and then I developed a questionnaire to use when interviewing educators and parents. I analyzed the information from the interviews and created themes and a transcript and then collaborated to support video creation of multiple short videos (reels).
Sarah Alban, Helen Anderson, Jordana Weiss: Neurodiversity 101
Neurodiversity has several definitions and throughout our presentation, we acknowledge these definitions as it pertains to healthcare, while we also recognize neurodiversity as an identity. We hope to recognize and celebrate neurodiversity while also highlighting the unique strengths and challenges they may experience. Some neurodiversity conditions have genetic etiology, for which we present the role of genetic professionals and provide examples of the intersectionality of neurodiversity and genetic conditions. The journey to diagnose neurodivergent conditions can be complex and lengthy, often involving a diagnostic odyssey that spans years and multiple healthcare providers. Understanding neurodiversity is crucial for medical providers to offer accurate diagnoses, tailored treatments, and compassionate care that respects the diverse needs and experiences of neurodivergent individuals.
Caterina LaRocca: Sex Education and the Role of Occupational Therapy
This product was designed during my clinical experience for OT school last fall. My clinical site was at a school for kids with multiple and complex disabilities. This school did not teach them sex education and there were several instances that arose, that I felt was appropriate for additional education and intervention to occur however it was not "allowed." I created this powerpoint and presented it to an interdisciplinary team to provide a rationalization of why it was important to teach sex education and ways to teach it within the rules of the school system. I feel passionate that sex education is not about sex, that it is about safety. This theme is highlighted throughout the presentation and this approach helps teachers and other professionals see the role that they can play in empowering their students to make safe decisions. I hope that this impacts children and their families by reducing rates of victimization across the lifespan.
Lucy Timmins: Resources for Executive Functioning
My name is Lucy Timmins (occupational therapy class of 2024), and my leadership project involved creating a website with various interventions, take-home resources, and parent resources to support children with executive functioning. I selected this project knowing about the issue facing children with disabilities who experience a service cliff when they transition out of high school which presents unique challenges as the tasks that adolescents are expected to complete become more difficult as they age, especially tasks requiring increased executive functioning. I developed various resources with written instructions through partnership with the Virginia Treatment Center for Children and then compiled them into a free, accessible website to expand tools available to therapists and families when working with transition-aged youth with disabilities.
Holden Allen: Turning a Page for the Future: Language Supports and Shared-Readings
The purpose of this project was to investigate the types of language support strategies used by caregivers of children with and without disabilities during shared readings and to identify strengths and weaknesses of caregiver reading behaviors used for supporting language development. A quantitative survey using snowball and convenience sampling was utilized for the collection of data. Respondents completed the study’s survey and indicated typical reading practices as well as language supports used (e.g., wh-questions, phonological awareness prompts, expansion, generalization, etc.). Demographic data, class position, and education background were also collected. Results indicated that caregivers possessed an acute awareness of the importance of reading for a child’s development. While caregivers did use a number of language support strategies, more complex and involved strategies were used less frequently. Language support strategies used during reading that were less supportive of language development were implemented more frequently than strategies that were more supportive of language. Based on the findings of this project’s survey, a resource website containing information packets for parents was created. Resource packets on the website include language supportive strategies, shared reading exercises, and commentary on neurodiversity and its relation to developmental expectations.
Danielle Toone: Language Supportive Strategies for Preschool Educators
This project was created as a webinar for preschool educators. After watching this webinar, preschool educators will know about what language supportive strategies are, be provided examples of each language supportive strategy and how they can use them in their classroom. This video will be provided to the Andy Taylor Center (a preschool in Farmville, VA). I created an additional “quick guide” for preschool educators to have handy with simple definitions of each language supportive strategy.
Language Supportive Strategies for Preschool Educators Presentation
Dawn Snow: Intersectionality of Blindness and Neurodivergence
My VaLEND leadership project is focused on concerns raised by families as well as youth and young adults who are blind and neurodivergent regarding experiences at training centers for the blind as well as the State Rehabilitation Center for the Blind. To better understand these concerns, I conducted focus groups with youth and young adults who are blind and are neurodivergent to explore their experiences. As a result of these discussions, the youth decided to establish monthly community of support meetings, which will enable them to have a safe space, feel a sense of community, share their lived experiences and decide on topics that they identify as areas of need to raise awareness around.
I chose this project due to my daughter’s repeated encounters with discrimination, harassment and bullying by both professionals and mentors while trying to access pre-ets and vocational rehabilitation programs for the blind.
My daughter and partner on this project, Kim, is committed to continuing the community of support meetings and developing a video series with youth and young adults who are blind and neurodivergent to share their perspectives and raise awareness by the spring of 2025.
Our hope is that through both the community of support and the video series that we will raise awareness and normalize neurodiversity within the blind community and professionals. Through targeting youth and their families, we hope more will advocate for changes in attitudes and access to the available programs and trainings while allowing students to utilize their needed supports. Additionally, we hope that this project will raise awareness and encourage agencies and organizations serving students who are blind to implement trainings around inclusion, neurodiversity, trauma informed and person-centered practices. Which we hope will ultimately impact how they work with and support all students who are blind or visually impaired.
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Emily Covington: Oral Care, Oral Stim, and the Mealtime Relationship
This project is designed for caregivers of infants with non-oral means of nutrition, but can be used by caregivers of any infant! When infants don’t receive their nutrition by mouth, caregivers may wonder: how can I set my baby up for success, so that they may eat by mouth one day? And the answer to that question is: build oral skills in other ways - using oral care and oral stimulation! This program also recognizes the fact that many family relationships are built around mealtime together and emphasizes ways to still foster those relationships with infants who receive non-oral nutrition.
Oral Care, Oral Stim, and the Mealtime Relationship - One Pager
Kristin Carleton: My Home Haven-A Disability Friendly Network
My final project is about what home looks like for those experiencing disability, and bringing together a group of professionals who also experience disability in their daily lives to help others transform their home into a true home haven, that meets their needs and becomes a true sanctuary. We have been meeting weekly for four months coming up with the details of our group, how we will solve the issue, what mediums we will use to address it, how the public will come to us, and what problems we are looking to solve. By coming to our network, a family will have access to a realtor, a mortgage lender, a special needs planner, a behavior analyst, and a designer who will work together to help a family realize their home dreams and find both functional and beautiful customizations to fill their needs.
My Home Haven Video Presentation
