Self-Assessment Guide Stories: Vermont's Experience
Emma Nelson, Vermont Sensory Access Project
We had only one child under three on our census when the grant cycle started, so we knew it was an immediate need to start thinking about how to find them. My background is in early intervention and I was new to the state and excited to tackle this issue. We were drawn to the Self-Assessment Guide because it provided a systematic way to figure out why we were under-identifying kids and to think about what the next steps would be.
I must admit that at first, when I saw all the tables and charts, I was overwhelmed and felt unsure about whether completing it would be feasible. As I went through the process, I had support from our Project Director, Susan Edelman, and my office mate who was the assistant director for Part C. Barb Purvis, then at NCDB, was instrumental in assisting me with action planning.
As we went through the guide, we realized that all our systems needed work. That felt overwhelming, but the next step was to identify the system with the most potential for positive impact and it quickly became clear to us that in our state it was Part C.
Once we completed the Self-Assessment Guide, we developed an action plan. Because I was new to the state and didn’t know many people in Part C, I started by implementing evidence-based practices related to developing rapport and establishing credibility. This led to other efforts such as refining our message and materials.
Building Rapport and Credibility
Part of what I did was attend a lot of state-level meetings where I was able to meet and build relationships with Part C administrators. As they learned who I was and what I did, they were more open to information I shared about the deaf-blind project.
Even though we are so tiny, Vermont is divided into 12 early intervention regions. I went to each region and shared information about myself, the project, and what we do.
Expanding Our Value to Part C Beyond Deaf-Blindness
Early in the process, I met with our state’s Part C director. She told me she would love to partner with the deaf-blind project, but asked what we could provide in addition to deaf-blind expertise. This was a very practical question given the small number of children with deaf-blindness in Vermont.
We talked about potential needs at the Vermont Interdisciplinary Team (I-Team), a state-funded program that focuses on providing support to teams and families of children with significant disabilities. She felt the program’s birth-to-three support was limited because they lacked personnel who really understood how to work with babies.
Since early intervention was my background, we decided that I should partner with the I-Team by stretching my position to provide intensive services to the state’s birth-to-three population. It's now 40% of my FTE. As I work with regional teams and advocates, I'm also finding kids who happen to be deaf-blind.
Refining Our Message and Materials
Prior to going through the Self-Assessment Guide process, our project approached early identification and referral efforts in a random way. We gave presentations and held trainings and provided a lot of child-specific TA, but nothing seemed to stick. Going through the guide made us realize that most people didn't know about our project. And those who did know about it, didn't know what services we provided.
With the help of Barb Purvis I created a couple of new documents. One featured profiles of six infants and toddlers with deaf-blindness to give EI providers an idea of the range of children who might be eligible for project services. The other explained the impact of deaf-blindness and why it is essential for children who are deaf-blind to receive services from individuals with specialized knowledge. Without an understanding of the ways deaf-blindness is different from other disabilities, why would they feel a need to call us?
Initially, I sent these two documents to a number of people, including Part C administrators and providers, to review and make sure the language was consistent with that commonly used by Part C providers. I asked questions like, “Would you share these resources with families?” “Would you feel comfortable carrying it in your tool kit to share with teams?” One thing I heard was that the term deaf-blindness is not okay. Providers didn’t feel comfortable using it with parents, because they felt it was too scary.
I found this incredible initial referral form in the EI&R Toolkit that I adapted for Vermont. It's so simple and uses language such as “children and youth with combined vision and hearing loss.” There's no worry about deaf-blindness. We have received very positive feedback about that form. I supplement it with a frequently asked questions document about our project.Vermont Sensory Access Project Eligibility FormPDF Document|251.8 KB
We went from zero to four infants and toddlers, which is huge. Three of them have since aged into part B. Another positive change is that early intervention providers call the project even for children who aren’t necessarily identified yet, just to ask questions. They know who I am now and feel comfortable calling. That's the number one thing. When we first started down this road, the providers didn't know who I was or what our project did. We focused on turning this around and have seen a dramatic change.
This article is a summary of information provided during a series of webinars in October and November 2015.