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Examples of Collaboration Supporting Families
“When there is teamwork and collaboration, wonderful things can happen!”
Author, poet and advocate
Sharing success stories of collaboration is an engaging way of seeding new visions and possibilities. Colleagues in New Jersey recently shared a great example of how the collaborative efforts of the New Jersey Statewide Parent Advocacy Network (SPAN) and the New Jersey Consortium on Deaf-Blindness (NJDBD) made a significant difference in the life of a 10 year old girl who is deaf-blind.
I hope you enjoy reading this story contributed by Monique Dujue Wilson, Parent Training and Information Specialist with NJ SPAN.
If you have an example of collaboration that has supported a family with a child who is deaf-blind, please share!
Yolanda Nicolas, an immigrant parent of Hispanic descent was referred to New Jersey’s Parent, Training and Information Center (SPAN) by Special Children Health Services to discuss her concern and disagreement with her school district’s proposed amendment to her daughter’s IEP. The document was put together without parental input. Yolanda felt there was a lack of concern on the part of the district for her daughter and this raised issues of trust.
Yolanda’s 10 year old daughter had a tragic accident as a small child, and, as a result, she sustained a traumatic brain injury which left her deaf, visually impaired, along with other delays and medical issues. The girl’s natural language is American Sign Language (ASL) and English is her second. Both Spanish and English are spoken in the home but not all of the family members living in the home have learned to use ASL.
During the school year, significant decisions were made regarding placement and services for Yolanda’s daughter. The first of these dealt with out of district placement in a classroom for students with auditory impairments. Both Yolanda and the district agreed that her daughter had “aged out” of this program, but Yolanda accepted the placement while waiting for the completion of the application process and acceptance to the Marie H. Katzenbach School for the Deaf. The application was submitted during the school year and Yolanda thought they were just waiting to be notified of her daughter’s acceptance to the school.
Health issues were also a contributing factor to decision making. Yolanda’s daughter experienced a lengthy hospitalization stay and received a medical waiver for bedside educational instruction for 2 hours per day while at the hospital. Yolanda received a notification to Amend the IEP that stated, upon discharge, her daughter will receive 2 hours of American Sign Language home bound instruction per week for the remainder of the school year and for the summer or until placement is found. No Meeting Form was included for her signature for approval.
This amendment was unacceptable to Yolanda. She was determined to find a better arrangement for her child. She did not want to repeat the experience she had with her oldest child. Yolanda felt she let her oldest child down by feeling intimidated and not speaking up, and that child quit school. It was very important to her to find the tools and resources and the voice to provide an opportunity for her daughter to be in a learning/engaged environment.
Yolanda, with assistance from SPAN, wrote a letter to her school district expressing her disagreement with the proposed amendment. An agreement was reached that Yolanda’s daughter would finish out the school year with the same services as those provided at the hospital. However, Yolanda requested a meeting to discuss the lack of an appropriate placement plan. Yolanda subsequently found out that the placement at Katzenbach had not been completed. The district left her with no other option except bedside tutoring for a well child. The bonds of trust between Yolanda and the school district were damaged even further.
During this time, an opportunity to strategize and leverage state resources materialized. The NJCDB was invited to present at SPAN’s full staff meeting. Representatives from SPAN & NJCDB met immediately after the meeting. It turned out that Yolanda’s daughter was “lost” to NJCDB’s system several years ago due to the family moving with no forwarding address. The Consortium, already familiar with the family and their history, was excited to reconnect with them and utilize their expertise to help support the family and this girl.
As a result of this connection, a representative from NJCDB and SPAN supported Yolanda at her daughter’s IEP meeting. The meeting was a very positive one. NJCDB’s expertise in deaf-blindness and their support for placement at the Katzenbach School for the Deaf was a contributing factor to the team’s decision to revise the amendment in favor of placement at the school. Staff from NJCDB also shared a great deal of information about a summer camp for students who are deaf-blind as an Extended School Year option rather than home instruction. Transportation was provided to and from camp with an aide and particular emphasis was placed on peer to peer interactions with signing. As a result, Yolanda’s daughter was given the opportunity to interact/engage with other children who sign. Her past placements had no other peers with those skills.
At the end of her daughter’s IEP meeting, Yolanda felt supported and empowered! She was grateful for the team’s affirmation that her daughter had the right to learn and play among her peers, and that her daughter’s love of “learning” did not have to be confined to her bedside.