Thomas has made national news reporting –
He was featured in the VOR weekly update.
The Face of VOR
4. Thomas’ Story ——————————————- By Cheryl Felak, RN, BSN * Seattle, Washington * Dec. 31, 2011
Thomas is my son. He’ll be 18 years old in February 2012. He has an extremely rare genetic disorder which is neurodegenerative and has early onset dementia. Throughout his youth, he has had many prolonged hospitalizations in the inpatient psychiatric unit at a children’s hospital. Due to his developmental disabilities, they really didn’t know what to do with him. They didn’t know about personal care. When he was 14 years old, he came home from one hospitalization with such extreme skin breakdown that it took about 5 months to clear up. Even with a 1:1 aide in the hospital setting, they were not able to provide for his personal care adequately. I would often arrive to see him with food on his face, food down the front of his shirt, teeth not brushed or a diaper that needed to be changed. In the hospitals the staff are not trained to care for DD patients and particularly on the psychiatric floors where children who are dually diagnosed (mental illness/developmental disability) tend to be hospitalized.
Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home. It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police.
Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home. We have also had to file for bankruptcy. Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.
When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You’ll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping. I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.
The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, “If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?”
This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.
Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others. I founded “Because We Care – Beyond Inclusion” as one way to help.