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