Lucas Camilo

Today we went to the Seattle City Council to testify in favor of the Caring Across Generations resolution which we mentioned in our last post as part of a broader campaign to push for better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.

Lucas took an early nap and since his nurse was out sick for the day we decided to bring him downtown for the hearing.  The three of us joined over a hundred people from various organizations who were there to wave flags and hold up thousands of postcards signed in favor of the resolution.  Lucas was in great spirits too – he got his own sticker and repeated over and over throughout the testimony “vote yes!”  He also brought along his Elmo sticker book in case they ran out of Vote Yes stickers.

Here’s what we said to the council:

We’re here today to talk about caregiving and our son Lucas.  He was born in 2009 with a rare neuromuscular disease called myotubular myopathy which causes him to have extremely low muscle tone.  He has a tracheostomy, uses a ventilator to help him breath, and receives all of his nutrition through a g-tube.  He’s also an amazing, funny and loving kid, but his medically fragile condition makes his life – and by extension our lives – very complicated.

Caregivers have played an important role in our lives over the last 2 ½ years.  Because of his complex needs and the risk of respiratory failure Lucas needs one of us or a vent-certified nurse to be with him at all times.  It’s hard to imagine not having home nursing and yet its been a struggle to get coverage for it– either through private insurance or support from the state – as well as other services that Lucas relies on.  Meanwhile, in our experience we have seen that the amazing nurses that help care for Lucas do not always receive health care benefits themselves, or a wage that properly values the work that they do.

We hope to someday live in a world where kids like Lucas get the services they need while at the same time the dedicated individuals who do the day-to-day caregiving for people with disabilities are valued and properly compensated.  The Caring Across Generations resolution is one step in the right direction, and we will continue to be part of the campaign for state and federal legislation that both ensures resources for long-term care and brings dignity to caregivers.  Thank you.

Congratulations to Washington CAN!, Caring Across Generations, SEIU, our friend Susie (the lead organizer on the campaign), and everyone else involved!