Trevor Moon is a very creative person. He has always loved music, puppets and computers. He can spend hours Drawing on his iPad, searching online for images as well as taking photos and then importing them into a collage on Microsoft word in addition to making videos with his puppets. He loves the outdoors as well: riding his tricycle, going camping in a recreational vehicle, he loves the campfire and food! He really loves visiting his grandparents once a year at their beach house in NJ.
Leslie Moon, is Trevor's mother and a fierce co-advocate for her son Trevor, who has autism and intermittent explosive disorder. Leslie has been fighting for her son's rights and ensuring that he receives the care and support he needs to thrive.
From early on in Trevor's special needs journey, Leslie noticed that even among those with special needs, Trevor was often left out. Despite organizations that were supposed to provide support, Leslie found that they didn't understand Trevor's unique behaviors that resulted from his conditions. So she took matters into her own hands and began advocating on his behalf.
In middle school, Leslie felt that Trevor's education program was nothing more than glorified child care. She filed a citizen's complaint with the state, speaking on behalf of all the students in his education program. As a result, their local school district hired a behavioral specialist to work with the teachers, reviewed and mostly rewrote all of the middle school students' IEPs (Individualized Education Program), and required all of the principals in the district to attend retraining on IEPs.
Up until just about two years ago Trevor was on the Children's Intensive I-Home Behavior Supports (CIIBS) waiver. The CIIBS waiver supports youth at risk of out-of-home placement due to significant challenging behaviors. This incredibly important program was inspired by Arzu Forough's oldest son and intensive advocacy by Forough and the WAA in 2008-2009 legislative session. This program which required evidenced based interventions by qualified behavioral health providers has helped hundreds of youth with intellectual and developmental disabilities access vital therapies that have allowed them to thrive in their own communities.
About 6 years ago was the last time when Trevor had the consistency and predictability of 5 days a week, full time school and then 3 days after school his CIIBS behavioral technician took him on community outings. In addition during all school breaks he went to a special needs camps. Doing things out in the world with other people was so important to Trevor. He hasn’t had any of the above in over 5 years. And that was the last time that Trevor was thriving in his own community.
First the behavior specialist under the CIIBS waiver terminated services 5 years ago and then there were changes to the CIIBS waiver and the most vital element, the wraparound behavior support was carved out and transitioned to Medicaid. Regrettably Washington's medicaid does not have an adequate network of behavioral health providers for older adolescents and adults. In absence of the behavior support, respite care providers are unable and unwilling to work with him leaving his twin sister as his only respite provider in over 4 years.
In absence of timely and appropriate medically necessary behavior support, challenging behaviors have grown more intense and Trevor and his family are suffering.
Trevor is now on the CORE waiver because he needs immediate out of home placement. Unfortunately immediate doesn’t mean anything because despite almost 2 years applying to supportive living homes, the family have received nothing but denials or more often no response at all.
It is in the face of this adversity that Trevor's co-advocate and mother, Leslie Moon has joined forces with WAA to bring Enhanced Behavior Support Homes (EBSH) to Washington State. EBSHs provide 24-hour behavioral health care, staffed by behavior technicians, and overseen by behavior specialists and psychiatric providers. These homes support IDD persons with significant behavioral challenges to live safely in the community. Legislation creating this model in Washington will save taxpayer dollars and support our vulnerable IDD residents with safe and stable homes.
Leslie has traveled to Olympia to testify, has spoken to her legislators, family and friends to spread the word and has been a tenacious and effective co-advocate for Trevor. In her words: These homes are our only hope as Trevor needs 24 hour behavioral care."
Residing in an EBSH Trevor will once again be able to go out into the world with his home’s behavior technicians and live his best life. His family will visit him regularly and truly enjoy those times with him because they will all be able to experience peace and calm at home. Something that currently elsive for this family and those similarly situated.
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