Early Intervention Discussion Group Stories
In the spring of 2017, twelve state deaf-blind projects signed up to take part in Early Intervention (EI) Discussion Groups focusing on use of the Early Identification and Referral Self-Assessment Guide (SAG) and the The Sooner the Better: A Framework for Training Early Intervention Practitioners on Deaf-Blindness. The intent of the groups was to share strategies and materials to boost early identification and referral efforts and increase the knowledge and skills of early intervention providers in the participants’ states.
Over the summer, participants were asked to complete the SAG and begin crafting an action plan to address issues it identified. A discussion group kick-off meeting was held in August 2017, where participants were asked the following questions:
- What did the SAG tell you?
- What did you put in your action plan as a result of completing the SAG?
- What are your top needs and how would you like this group to help you?
The twelve states were then divided into two groups of six. They met monthly from September 2017 through February 2018 to talk about their action plans and gain insight from each other to guide their action planning processes. The following stories provide examples of work they engaged in over the course of the six months. We hope they will inspire other state deaf-blind projects to think about how to improve early intervention efforts.
Learning Early Intervention Systems Takes Time When You Are New
When Jennifer Walkup joined the staff of Children and Youth with Sensory Impairments (CAYSI), the Arkansas deaf-blind project, she quickly realized she had a lot to learn about Arkansas early intervention systems and the people who work in them. To get started, she partnered with Jana Villimez (CAYSI Family Consultant) to complete the SAG and study the results. The number of children aged birth to three on their child count looked good in comparison to the national count, but they still felt they were missing children.
Jennifer and Jana created an action plan—focused on Part C and EHDI—that emphasized establishing credibility and building relationships. Soon after, Jennifer attended a meeting with early intervention vision and hearing providers, met with the early childhood outreach staff at the Arkansas School for the Blind, and participated in an EHDI meeting where she connected with audiologists.
As a result of these actions, Jennifer felt she was building name recognition for herself as a new project staff member with early intervention agencies across the state. This work has led to four new referrals of infants and toddlers in the past year, including one from the Arkansas Children’s Hospital.
See Evidenced-Based Practice: Building rapport and establishing credibility with primary referral sources for more information.
Early Access Leadership Group Has Become the Key
Susan Brennan, Project Coordinator for Iowa’s Deafblind Services Project, is no stranger to using the SAG to inform action planning for early intervention. The project originally completed the guide in 2012-13. Susan completed it again in the spring of 2017 and found there had been some improvement in the project's birth-to-three child count numbers. There has been an increase in the number of infants and toddlers referred to the project and Susan believes it is due her collaboration with the Early ACCESS Leadership Group that is part of the Iowa Department of Education. She has included the state Part C coordinator on the deaf-blind project’s advisory board and this has provided her with connections to key stakeholders within Part C, EHDI, medical, and community systems.
Susan used a significant portion of a recent advisory board meeting to discuss the project’s EI&R efforts. She shared findings from the SAG report, including:
- The project struggles to get referrals directly from EHDI, but they do get them from Area Education Agency (AEA) audiologists. This is due to the way Iowa’s EHDI referral system is set up to refer directly to the AEAs.
- Referrals from TVIs are hit and miss, despite the fact that she gives presentations on deaf-blindness to them twice a year.
- There is a lack of knowledge on the part of TVIs about the American Printing House (APH) for the Blind’s Federal Quota census and the state project’s deaf-blind child count (some TVIs appear to believe that a child can’t be on both counts).
- NICU Liaisons in Part C could be a key partner in locating children across the state.
Susan took several steps as a result of feedback from the advisory board. She worked with the state Part C coordinator and state AEA Early ACCESS liaisons to develop a recommended vision screening checklist for AEA use. This was needed as the AEAs were not using a consistent checklist and had old materials. Once the vision screening checklist is reviewed by the Early ACCESS liaisons, it will be available for use via the state web IFSP. She is also working on a factsheet for TVIs that clearly distinguishes between the APH Federal Quota Census and state deaf-blind project child counts. The fact sheet will explain the importance of having children on both counts.
Getting the Word Out
Marites Altuna, co-director of the Kansas Deaf-Blind (KSDB) Project, is involved in a number of activities designed to boost early identification and referral. Efforts have focused on getting the word out about the project and the services it provides to medical and Part C providers, and collaborating with early childhood agencies to provide playgroups for children and their families. Recently she has given presentations to the following agencies:
- Local Parents as Teachers
- Speech and Hearing Clinic (Audiology Group) at Children’s Mercy Hospital
- Shawnee County Early Childhood Collaboration (group of agencies working with infant-toddlers and preschoolers)
- KS Division of Early Childhood (CEC Division of Early Childhood) - the main topic was "Using the iPad for Toddlers and Preschoolers with Visual Impairments," presented by Bob Taylor/DB Consultant
She also created a 2-minute video about the KSDB Project that was sent to a TVI Listserv and state Part C, Part B, and EHDI coordinators for dissemination, and shared during the presentation to the KS Division of Early Childhood described above.
In collaboration with the Kansas State School for the Blind Outreach, the KSDB Project is offering playgroups to:
- Assist and equip families in working with young children who have vision or dual sensory loss
- Strengthen partnerships between the project, the School for the Blind, and infant-toddler services across the state
For example, they partnered with Wyandotte County Infant-Toddler Services to conduct four parent-child playgroups. The group activities were developed by the school district’s TVI, occupational therapist, family service coordinator, and the KSDB Project. (A special thank you to Julie Maier at California Deafblind Services for sharing playgroup ideas.) The project and the school for the blind have created a video about the groups called “Enjoy the Journey of a VIP (Very Important Playgroup).”
An outgrowth of the playgroups was a community outing planned by parents and sponsored by the project. The objectives were to create connections among families impacted by deaf-blindness and provide a fun sensory experience for their children.
All these activities have been well worth the effort. Last year, there were seven infants and toddlers on the project’s registry. This year, it increased to eleven. Moving forward, the project hopes to expand the play groups to additional locations. It will also work with Part C, B, and EHDI coordinators, who are currently on the project’s advisory council, to make connections with early intervention providers on the western side of the state, where it often struggles to identify children.
See Medical Community - Resources for Under Identification for more information about how to address under identification within the medical community.
Forging Ground with Community Programs
Rose Angelocci, Assistant Project Coordinator for the Louisiana Deafblind Project for Children and Youth, originally joined an EI Discussion Group because her project was interested in focusing on improving referrals. After she and Michael Norman (Project Coordinator) completed the SAG, they realized that they were primarily getting referrals from EHDI. The EI programs at the Louisiana School for the Deaf and the Louisiana School for the Visually Impaired were another consistent source. Rose and Michael wanted to strengthen these existing relationships and also increase referrals from Part C and the medical community. Their action plan goals were to:
- Strengthen the deaf-blind project’s relationship with the school for the visually impaired
- Reach out to the five Early Head Start program centers in Louisiana (because they require vision and hearing screening, they were likely to be a great referral source)
- Find inroads into the medical community
- Use a portion of an advisory board meeting to review their SAG results and child count data (the director of Part C and an ophthalmologist serve on the board and could be a key to improving connections with Part C and medical providers)
Over the past six months, Rose has spent a large amount of time cleaning up the project’s registry and establishing relationships. In the fall of 2017, she and Michael held a statewide conference on deaf-blindness attended by more than 100 participants. They used materials from The Sooner the Better framework to create a breakout session for EI providers.
Over the past five years, Louisiana has done an amazing job of finding children. Recently, Rose added three children to their registry in one week. When asked what the key to success was, she said she believes it’s due to taking time to evaluate state needs related to referral, creating a clear message about project offerings, and establishing strong relationships within systems. Most recently, the project added its registration form to their website and obtained their first referral from it.
What’s in store next for the Louisiana project? Rose plans to create separate referral forms for different agencies to use to refer children to the project and finish building a solid case-management system to keep things running smoothly. When asked what she liked about being a part of the EI Discussion Group, she said, “It has been invaluable for me in getting to know what other projects are doing and learn from them about our next best steps.”
Help Me, Part C!
Mary Steenberg, from the Montana Deaf-Blind Project joined an EI discussion group because she has an early childhood background and knew the project could be doing more to increase infant and toddler referrals. After completing the SAG, she realized that their birth-to-three numbers looked good, but all of the referrals were coming from one person in one region of the state and they had received no referrals from Part C for two years.
In Montana, there is a good system in place that encourages medical providers to directly refer infant and toddlers with or at risk for a disability to the state’s five Part C regions. Rather than reach out directly to medical providers, Mary realized it would be most efficient to work on improving referrals from Part C. She set a goal to raise the visibility of the deaf-blind project with Part C and provide training on early identification and effective intervention strategies for children with deaf-blindness to Part C providers.
While providing support to one Part C provider during a joint home visit, Mary shared key resources about deaf-blindness, such as active learning strategies, use of tactile symbols and cues, and how to build routines. As a result of this support, Mary formed a relationship with the provider, who was then instrumental in helping Mary make connections to other Part C providers. This shows the power of a relationship-based approach to early identification and referral outreach. Mary also tailored her project’s materials to specific audiences and solicited input from providers and families about how they looked and what should be included. The Montana Deaf-Blind Project has since received three infant referrals from Part C.
Keeping Track of Students as They Transition From Part C to Part B
Dottie Snyder signed up to participate in an NCDB EI discussion group because she had noticed a decline in the number of children on the North Carolina deaf-blind project’s child count. During the present grant cycle, the number of children (birth to 21) had decreased by nearly 100. After completing the SAG and evaluating her project’s child count data, she realized they were losing track of children when they transitioned from Part C to Part B. Sometimes, but not always, the children would show up on the count again at around age five or six.
Dottie got to work improving child-find efforts within Part C, the medical community, and community programs. First, she met with her advisory board to create a solid action plan based on the SAG findings. In North Carolina, the Part C lead agency is housed at the Department of Public Instruction. She worked closely with Part C directors and providers to get more information about the deaf-blind project and its referral process to early intervention providers. She also met with the North Carolina Interagency Coordinating Council at DHHS to talk about how to improve the transition process from Part C to Part B. The project began sharing brochures and rack cards with the medical community.
Dottie says that she found the EI discussion groups helpful because she learned that other state projects also struggle to find the best ways reach and train providers. Hearing what other states are doing has been very helpful. As a result of being part of the group and working on early identification in her own state, she realized that building relationships with providers is an ongoing need.
Losing track of children as they make the transition from Part C to Part B is a common problem for state deaf-blind projects because providers and parents do not always remember to notify the project of a child’s new placement and the receiving team may not know about the project. To help address this need, a group of state deaf-blind project family engagement coordinators created the following:
- A letter that state projects can customize and send to families about 4 months prior to the transition. It explains the transition process and the role of the family. Attached to it is a planning checklist for families.
- A letter that state projects can customize and send to families one month prior to a child’s transition requesting the receiving team’s contact information.
NORTH AND SOUTH DAKOTA
Good Intervention Starts with Well-Trained Providers
Sherri Nelson is no stranger to the world of early intervention. She worked as an EI provider for 18 years prior to taking on the position of project director for the North Dakota Dual Sensory Project 12 years ago. She completed the SAG in 2012-13 and decided at that time to focus on improving referrals by working more with Part C. The birth-to-three child count numbers in North Dakota are right on target and Sherri believes this is due to solid relationships with Part C and other agencies.
Sherri and Rose Moehring (project director for the South Dakota Deaf-Blind Project) have partnered in the use of the Open Hands, Open Access: Deaf-Blind Intervener Learning Modules (OHOA) to train over 40 EI providers in their states. They are now working on a plan to keep these providers connected to the deaf-blind projects and to one another by creating a community of practice where they share monthly intervention strategies. Rose and Sherri are planning to use short videos from The Sooner the Better framework to generate conversation.
Early intervention providers have found the OHOA Modules extremely beneficial and their enthusiasm has spread to two EI regional directors in North Dakota, who are now taking the module courses themselves. In addition, EI directors in North Dakota have told Sherri and Rose they’ve noticed that more children are being identified for visual impairments, hearing impairments, and dual sensory loss. Another surprise outcome of the OHOA module courses is that a few of early intervention providers who have completed the courses are interested in becoming facilitators. That’s state capacity building at its best!
Sherri has continued cross training teachers at the North Dakota School for the Deaf and North Dakota Vision Services/School for the Blind on deaf-blindness in order to increase the pool of deaf-blind specialists in the state. She also plans to visit the state’s eight regional EI centers along with staff from the Schools for the Deaf and the Blind and raise awareness and emphasize the need for early identification and referral of infants and toddlers who are visually impaired, deaf/hard of hearing, or deaf-blind to the state deaf-blind project or the schools. She has used this strategy for the last few years and says it has helped immensely in making connections with new EI staff and reminding them about the services offered by the deaf-blind project and the two schools. They have consistently received several referrals immediately following the visits.
When asked what she liked about being a part of the EI Discussion Group, Sherri said “I love hearing what other states are doing and getting ideas for what I could try in my own state.”
Storms Can't Stop Us!
Despite the unimaginable devastation from tropical storms, Juanita Rodriguez and Marta Sanabria are developing relationships with the medical community and Part C in Puerto Rico, including working closely with the Department of Health to obtain information about children identified with Congenital Zika Syndrome. They are also partnering with the director of Part C to coordinate trainings for Part C providers. In August 2017, they completed a day-long training using materials from The Sooner the Better framework. The training covered:
- Risk factors associated with combined vision and hearing loss
- The impact of combined vision and hearing loss on early development
- Key evidence-based practices to improve developmental outcomes
- Accommodations and adaptations that promote access to and participation in learning experiences
- Strategies to promote movement, exploration, communication, concept development, and social interaction
The providers appreciated the training so much that Juanita and Marta will be developing monthly trainings for Part C providers, again using materials from the Sooner the Better framework as their guide.
The Project is now part of the Puerto Rico National Neonatal Hearing Screening Committee (PRNNHSC). During the 3rd Symposium on Neonatal Hearing Screen on March 3, 2018, sponsored by PRNNHSC, Juanita gave a presentation on the objectives of the project, along with a definition of deaf-blindness and a description of some of the syndromes that cause hearing and vision loss.
Relationships = Referrals
Danna Conn, Project Coordinator for the Tennessee Deaf-Blind Project, has been working hard on early intervention for a number of years and it’s really paying off. She was one of the members of the original group of state projects that pilot tested the SAG in 2012-2013. After participating in the pilot test, Danna, along with several other members of the test group, met monthly to learn from one another’s experiences. She then became part of an NCDB Part C workgroup that helped create The Sooner the Better framework.
Danna says that the state deaf-blind project’s key to child-find success over the past five years has been due to good relationships. At one time, the project was not strongly affiliated with Part C and Part B coordinators, but it is now. Danna acknowledges that one reason for this is that the coordinators have the remained the same for the past several years.
Every January, state project staff attend a regional Part C directors’ meeting where they:
- Provide a summary of all the referrals they have received from Part C
- Describe the work of the project
- Disseminate census forms
In addition to outreach to regional directors, Danna provides small, regional trainings to Part C service providers. She is careful to explain how the strategies she’s teaching apply to all children with complex needs, not just those who are deaf-blind.