Our annual Gala and the graciousness of sponsors, donors and volunteers always reminds me of our incredible community of support. Through the tremendous time and treasures provided, we can continue to support the lives of individuals with intellectual and developmental disabilities and help them reach their dreams.
Stories of those impacted by disabilities and how others have adapted their lives show that life can be pretty messy and complicated – just when you think you know what to expect and when you think you’ve gained traction, life intervenes and paths change.
I recently attended the celebration of Sarah Ruth Thury’s life. Last spring, I attended memorial services for Patrick Sean Cashman. Both Sarah and Patrick were younger than I am, so their deaths were particularly surprising. Both individuals impacted me with their larger-than-life personalities.
When I first met Sarah, she was still in school. She arrived home every day by taxi. She had to ride in the taxi with other kids, and she came home every day eager to be rid of those d*** kids.
We had routines that needed to be completed. Washing her hair was one of them. It was not a time she cherished. She and I developed a little routine that helped with the transitions: she would concede to the hair washing if I sang I’m Gonna Wash That Man Right Out of My Hair. We would wash the grumblies down the drain. Done and done.
Sarah taught me to flexible and creative in dealing with situations. Telling didn’t work. Suggesting worked sometimes. Creating distractions or incentives to get work done often was successful. She taught me that humor and kindness make the way so much easier.
I met Patrick as a boy when he was living at LBSA and going to Laura Baker School. When I first met him, Patrick had just moved back, and he was so, so sad. He missed his Ma. He had significant trouble communicating, so it often took a long time to figure out exactly what he wanted. Patrick would beg “Pease” in a way that broke your heart.
He was a spitfire, with an Irish spirit and red-gold hair. He loved to tease, with a twinkle in his eye and belly laugh that filled the room. Patrick’s family loved Patrick as much as he loved them. To his brothers and sisters, Patrick was the glue that held their family together.
Patrick needed more support than his Ma and his family could provide; that’s why he was living at Laura Baker. Patrick’s circle was as big as he needed, and I felt honored to be part of it.
Patrick taught me patience and persistence. He taught me to ask questions and to listen carefully for the answer. He taught me that if words don’t work, you can find other ways to be understood. Our friendship inspired me to continue this work that we celebrate at our annual Gala. This work – the tending of relationships and community. This work of understanding people beyond words, honoring their choices, standing by them all the way through.
This Work Continues
Our families are continually adapting to meet the needs of their children with disabilities, creating strategies to ensure that their kids get the support they need. Here are some stories they shared with us recently.
Oftentimes, families are doing their work in isolation, unable to gather the wherewithal to create community as they slog forward to make an often indifferent community hear and respond to their needs. Families are committed to giving their loved ones the best life possible, to provide choices – even if they have to create these places, programs and connections all by themselves. Families devote their resources in ways that are often invisible to us. A recent study estimates that there are over 43 million family caregivers in the U.S., and reports estimate that the annual economic value of uncompensated family caregivers is about $470 billion. Those are BIG numbers.
Making Intentional Sacrifices
People don’t ask to have disabilities, and most families don’t invite disability into their lives. Living with and supporting a person with disabilities changes lives.
Choosing to support people with disabilities professionally means intentionally making sacrifices. Our employees’ income is limited because the state legislature sets our reimbursement rates at levels that limit what we can pay our employees. You may be surprised that we aren’t allowed to set our own wages/rates.
The state reimbursement system allows for an average direct support staff hourly wage of $12.41. Not a starting wage. An average wage. This makes it hard to attract and retain enough quality staff members to meet the need for care. For years, we have been placed in competition with other sectors – most notably elder services, which receive rate increases when we do not. The result? A desperate shortage of workers that strains our ability to provide services. The idea that people who choose to provide care must also choose poverty has got to stop.
Our current political and social climate threatens to push marginalized people even further to the fringe. In this sea of indifference, our supporters and advocates are our harbingers of hope. Just as the inscription on the Statue of Liberty promises hope and safe harbor to those who enter, LBSA supporters and advocates promise listening ears, warm hearts and the comfort of community. Every voice must be heard; every individual empowered to choose where they live, work and engage in the community.
We Must Come Together
We have an opportunity to change lives together – to intentionally make our community a better place by taking responsibility to change lives instead of counting on “the system” or a nameless, faceless “someone else” to do so. Together, we are on the cusp of change that matters deeply to individuals, families, staff and to the community at large. How can we secure this progress and see that it continues?
At Laura Baker, we work to bring people together to share resources in the best way possible – to support the individual AND create opportunities to ensure our congregate system serves all, and also to influence policy-makers to craft the best congregate policies that also serve each individual. That’s the challenge of policy: Crafting broad practices for all that are relevant and effective for each one. Policies must serve the person and the population.
One of our vision statements at Laura Baker Services Association is to remain small enough to know, as individuals, the people we support and their circles. It’s a principle that drives quality and caring in everything we do. It’s a challenge in an era where bigger always seems better and where we expect to get everything we want without paying the real cost.
Open Doors for Us
Families, staff and Laura Baker Services Association leaders are committed to pursuing change to ensure choice and support for people with disabilities.
How will you commit to join us? As a neighbor, employer, advocate, tax payer?
Your Actions Matter
Join the over 8,500 who have already signed our petition. Talk to legislators. Support our work with your donations. Have personal relationships with those with disabilities. Volunteer. Advocate. Share the LBSA story with colleagues and neighbors. Help people understand why it’s important to care about a group that is often invisible in our society.
Why? Because this is OUR community, and our silence affects lives. Silence in coming months may limit support and choices. So, what will your response be when you hear a news story that something tragic has happened to a person with a disability? Will you blame the family? The provider? Will you understand that policy practices impact lives?
Changing Lives One at a Time
The collective good can only thrive when we recognize each other as individuals. As you get to know people and their stories, YOUR life may change. Are you brave enough to let that happen? We can change each other’s lives one at a time – just ask our volunteers, ask the families we serve.