Guam’s Positive Parents Together Inc. (GPPT) the non-profit parent driven organization responsible for facilitating the Deaf and Hard of Hearing (DHH) Parent Support Group for Guam’s families with children identified with a hearing loss has had an exciting and busy September!
GPPT hit the ground running in September with a Deaf Awareness Proclamation signing at the Governor’s Conference Room on Monday, September 9, 2019. Present at the signing was Governor Lourdes Leon Guerrero, Senator Kelly Marsh (Taitano), Ann Marie Cruz, GPPT Board President, Mary-Therese, GPPT Board Vice President, Evelyn Claros, GPPT Board Treasurer, Trisha Suzuki, Parent Mentor, Margarita Gay, DPHSS Nursing Administrator, Kirsten Rosario, GCC ASL Instructor, Terrie Fejarang, retired Guam CEDDERS Associate Director, Marie Wusstig, Guam CEDDERS Training Associate along with numerous supporters present to witness the inaugural declaration of Deaf Awareness Month for the month of September.
As part of celebrating Deaf Awareness month , GPPT spearheaded activities to promote Deaf Awareness in the community with a WAVE at the Paseo Loop on Friday, September 13. Then on Sunday, September 15, members of the community were invited to show their support by participating in first Deaf Awareness Outreach held at the Agana Shopping Center. The group also organized a special Sunday Mass for members of the DHH Community and their families on September 22 at the Our Lady of Purification Church in Maina. Family members and friends attended to celebrate September, Deaf Awareness Month.
GPPT also organized its first Deaf Awareness fundraising dinner. The purpose for this event was to bring awareness to the community of the issues that DHH families and their children face. Funds raised were identified to support DHH families with hearing aids and other necessities families may require such as adequate health and or educational resources for their DHH child.
GPPT continued to meet with Guam EHDI and The CARE Project of North Carolina, via Zoom to finalize plans for the first Guam CARE Project Family Retreat. In November, the collaborative efforts between Guam EHDI – Fitme Project , GPPT and The CARE Project from North Carolina, held its first Guam CARE Project Family Retreat on November 8 – 10, 2019. Members from North Carolina’s CARE Project, under the direction of Johnnie Sexton, Executive Director of The CARE Project facilitated the three-day Family Retreat at the Lotte Hotel Guam. Day one was an informal meeting with the families to meet with the volunteers, The CARE Project Team and Guam EHDI staff and allow for questions families may have regarding the retreat. On day two, the team presenting included Pediatric Audiologist, John J. (JJ) Whicker, Director, Inspirational Speaker, Katie Whicker, Parent Mentors Bo and Jessica Peterson and their sons, Oscar and Magnus. The families experienced a motivational seminar facilitated by Katie Whicker, a woman with Treacher Collins Syndrome and has grown up with a hearing loss. Parents, engaged in a focus group facilitated by JJ Whicker, “The Emotional Journey” which allowed parents to share their stories related to their children’s birth and diagnosis of deafness and hearing loss. This focus group allowed for the parents to openly express their grief among a safe group of listeners who understood and had shared experiences. In the afternoon, two families volunteered to be recorded sharing their stories to provide The CARE Project footage to share as they conduct sensitivity training with hearing screeners and health care professionals. The rest of the afternoon was spent with the main focus group split in two smaller groups (mothers and fathers) to further openly discuss their experiences and challenges in a more private and intimate setting with parent mentors Bo and Jessica Peterson. Parents spent the final morning in two seminars led by JJ Whicker, “Understanding Your Child’s Hearing” and “Disability Law: Knowing Your Rights and Advocating for Your Child”. The group convened for one last photo before departing.
On November 25, the Commonwealth of the Northern Mariana Islands (CNMI) Public School System (PSS), Special Education Program convened its Special Education State Advisory Panel (SESAP), CNMI’s key stakeholder group, comprised of PSS administrators, agency/organization representatives, parent representatives, and individuals with disabilities. Guam CEDDERS June De Leon supported the CNMI Special Education Director during the review of CNMI’s FFY 2018 Individuals with Disabilities Education Act (IDEA) Part B Annual Performance Report (APR) indicator performance data and information, including discussion of reasons for “slippage” from last reporting year’s performance, where applicable. In addition, trend data for each APR indicator were reviewed to gather input from SESAP members on proposed indicator targets for FFY 2019, a requirement of the FFY 2018 IDEA Part B APR. SESAP’s stakeholder input for proposed FFY 2019 APR indicator targets was a consensus amongst all members.
On the same day, Ms. De Leon supported the PSS Assessment Coordinator who facilitated an afternoon session with 21 special education teachers and student teachers on the “CNMI Spring 2019 Multi-State Alternate Assessment (MSAA) Results & Data Interpretation.” The components of the district, school, and individual student reports were reviewed to increase understanding of the student results from administering the Spring 2019 MSAA. In addition, implications for improving academic instruction for students with significant cognitive disabilities was discussed with resources provided to support lesson plan development. Positive feedback from the session indicated that the information shared, especially the student results from the Spring 2019 MSAA administration, was helpful to improve instruction and to be prepared for the Spring 2020 MSAA administration.
The Guam Department of Education (GDOE) in partnership with Guam CEDDERS held overview sessions on Nov. 25-26 at the GDOE Tiyan main office for Special Education teachers, Division personnel, and parents centered on how to use Bookshare to help students with a print disability have access to reading materials. Bookshare, a Benetech initiative, is an ebook library that contains over 770,000 titles. Bookshare makes reading easier for people with reading barriers such as dyslexia, blindness, and physical disabilities. Bookshare allows users to listen to books being read aloud, to follow along with audio and highlighted text, to read in large type, and to read in Braille. Free membership in Bookshare is available for all qualified U.S. students of any age through funds from the U.S. Department of Education. The sessions were facilitated by Christine Jones, the Associate Director for U.S. Education for Bookshare/Benetech.
The light at the end of the tunnel is shining brightly for 18 scholars in the Educating Pacific Island Clinicians in Speech Pathology (EPICS) Project as they get closer to earning their graduate degree in Speech Language Pathology from San José State University (SJSU).
Now in the fifth and last year of the project, scholars have a very challenging workload that will only intensify as the final semester approaches. Scholars continue to take online classes and complete their practicum hours to meet course requirements for a Master’s degree in Speech-Language Pathology. In addition, scholars will be preparing and taking their program’s comprehensive examination May 2, 2020. They will also be preparing and taking the PRAXIS for Speech-Language Pathologists shortly after.
In June 2020, the second cohort of scholars will be spending about eight weeks in an externship in San José, California. Graduation will take place on Guam in August.
The EPICS Project is supported by a personnel preparation grant from the U.S. Department of Education, Office of Special Education Programs, awarded to SJSU, in partnership with Guam CEDDERS.
Over 1,100 people from around the United States and internationally participated in the 2019 Association of University Centers on Disabilities (AUCD) Conference in Washington D.C. from November 17th to November 21st, 2019. The theme, “Leading Change Together,” focused on how people with and without disabilities come together to celebrate the many ways to lead change as an organization that works with diverse communities and people through research, practices, and advocacy that impacts a broad spectrum of disabilities. The extensive pool of resources and knowledge in one setting ignited interesting discussions and generated ideas on how to implement new program services as well as to enhance existing services to better serve individuals with disabilities and their families.
During the conference, AUCD also hosted a meeting with Julie Hocker, Administration on Disabilities Commissioner, who provided insights on the administration’s initiatives: increasing life expectancy of individuals with disabilities, health education, healthcare, and post-secondary transition services.
The AUCD is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. Network members consist of 67 University Centers for Excellence in Developmental Disabilities (UCEDD) receiving core funding from the Administration on Intellectual and Developmental Disabilities (AIDD); 43 Leadership Education in Neurodevelopmental Disabilities (LEND) Programs receiving core funding from the Maternal and Child Health Bureau (MCHB); 15 Intellectual and Developmental Disability Research Centers (IDDRC), receiving core funding from the Eunice Kennedy Shriver National Institute for Child Health and Development (NICHD). These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change.
The “Hafa Adai spirit” and gracious welcome from Guam Congressman Michael San Nicolas and his wife, Mrs. Kathy San Nicolas, could be felt in our nation’s capital as CEDDERS Interim Director June De Leon and CEDDERS Associate Director Michelle Aguigui visited the Congressman in his office in Washington D.C. during the AUCD Hill visits on November 21th. Surrounded by the classical ambiance of the “Tunnel Restaurant,” the afternoon was filled with networking and educating our Congressman on topics that were discussed during the 2019 AUCD Annual Conference, such as increasing life expectancy of individuals with disabilities, improving healthcare, and post-secondary education transition services. The Congressman also shared the various initiatives that he is working on to increase services for individuals with disabilities residing on Guam.