Gresham resident Beverly McNutt joins with other families from across the state in asking Congress not to cut Medicaid. Her daughter Bonnie relies on Medicaid for community and in-home supports. Beverly shares her daughter Bonnie’s story here.
Can you tell us a little about Bonnie? What’s she like? What does she enjoy?
Bonnie loves astronomy. She recently decided that she wants to be an astrophysicist. She’s in 7th grade and is in a high school astronomy class. She’s at the top of the class.
Bonnie enjoys skiing through Shriners’ ski program. She enjoys skateboarding while in her walker. She enjoys bike riding, and is obsessed with Minecraft.
Bonnie’s a fairly typical almost teenager, who happens to experience arthrogryposis multiplex congenita (AMC), which means all her joints were contracted at birth and she has weak muscles. She has improved immensely through years of physical therapy and occupational therapy.
She has virtually no ability to swallow and is tube fed. Bonnie is technically non-verbal. We like to call it pre-verbal. Her family members, teachers, and peers understand her. She is in the process of getting an augmentative communication device.
Bonnie has a Canine Companion for Independence named Merv. Merv understands her various commands.
Bonnie is a demanding, sassy girl, who tends to get her way. She will admit to you she is spoiled as she has older siblings, ages 26 to 31.
Which community supports is she able to access through Medicaid?
Thanks to Medicaid, she is able to have Personal Support Workers (PSWs). The PSWs take her out in her community. She goes for walks. She goes for bike rides. They get her to musicals that she loves to attend. They take her to concerts. Sometimes, we get a rare ticket to the Blazers or to Winterhawks games.
Which in-home supports does she access?
The in-home supports that Bonnie receives are amazing. I am turning 53 when Bonnie turns 13. As she grows, I age. She needs help with all activities of daily living. Lifting Bonnie in and out of the car, or bath, things like that, are where the PSWs really come in.
The things most of us take for granted, like bathing, eating, and dressing, Bon needs help with each step. Her PSWs are trained to feed Bonnie . Her PSWs are trained in her medical equipment. Each day she needs her lungs cleared. Each day her bed needs changing.
Each day, due to her drool, scarves need to be washed, towels bleached. Each day, her PSWs and she play various board games, video games, read books–things she cannot do independently. The PSWs mix work with play.
What do these kind of interactions mean for her quality of life?
Bonnie deserves interaction with her typical peers, as well as with everyone in her community. Her life is full because of the help of her PSWs.
What would you say to Members of Congress who are considering making deep cuts to Medicaid that would impact these programs?
Bonnie is a bright, lovely child who has a lot of expensive medical needs. We have private insurance, but the co-pays would kill our budget as a family unit. Her oxygen supplies, g-tube feeding supplies, all of her supplies, are expensive.
I challenge Members of Congress to meet our family – meet our Bonnie, and see life through our eyes.