In America, we receive constant messages that each person can do it all, be it all, do it all on their own. People with intellectual and developmental disabilities challenge that notion. Sometimes, they challenge it based on their need for our support. Sometimes, they challenge the need for creating community.
For many years, “the system”, in the stead of community, has made promises to people with disabilities and their families. As the system changes, we’ve got to step up as community.
There’s a public policy debate that’s being fought quietly behind the scenes about how dollars should be allocated for individuals. Some say everyone should be able to live independently in the community, in their own homes. The notion to politicians is that services are less costly delivered this way. When you those people are poor, don’t have their own homes, need 24-hour services and supports, the math simply doesn’t add up. Others say we need to provide the right amount of support, at the right time, for each person.
How has the system failed and what can we do as community members to bridge the gap?
With their permission, I’d like to share Kelly and her family’s story with you. Kelly’s story is incomplete without her family. Kelly and others with disabilities’ stories are incomplete without an engaged and supportive community.
You may have met Kelly: she works at the Y, has had her own weeding business and has worked at a variety of other places in Northfield. She spends time with her friends out and about town, she takes some classes at the Northfield Arts Guild and spends some time volunteering at LBSA events. She has a bright and engaging smile. She’s a little cautious about starting a conversation. Once engaged, she participates fully. She is an amazing self-advocate; her mom has taught her that.
Kelly is 26, and she lives at her parents’ home in Northfield.
Over and over again, the system and the community have failed Kelly. Not intentionally, or with malice. Often, those system failures are reflected back as Kelly having failed. We have all experienced failure in our lives at one time or another. If you’re like me, you look at what happened and try to fix what went wrong. When the “fix” is something you have no control over, you feel helpless. It can be difficult to move on. Repeat that experience time and again, and it can be difficult to get out of bed, much less move on.
Kelly has some people in her life that she counts on for support. Her parents, Lynn and Randy, have some people like that in their life. What they don’t have, what many people with disabilities don’t have, is the confidence that their circle will be there for them when something happens. Here’s why:
Kelly has had some jobs since she graduated from high school. Unfortunately, she has not had enough support to consistently maintain those jobs. Lynn and Randy provide the majority of her support. They both have full time jobs, so they aren’t available as her full time support people. And in the long run, that probably isn’t a good idea anyhow. Like we all do, Kelly needs a larger circle of support than Lynn and Randy. And Lynn and Randy need a circle of support as well.
Adequate support on the job for Kelly to succeed
Kelly has a lot of skills. She is persistent and thorough in doing a job, once she understands what needs to be done. Kelly has developed some accommodations that help her to succeed: she uses her phone to time her breaks and set other reminders for herself. She uses checklists to ensure that she’s completed all of the job. Like all of us, Kelly has figured out some things to help her be successful.
Because of her support needs, sometimes Kelly needs more than those accommodations. Her disability means that she isn’t always successful in managing her anxiety and stress when something unexpected happens. She may need a co-worker to talk her through a situation that she hasn’t experienced before. She may need to take an extra break. Her job duties may need to be developed differently: instead of a multi-purpose job description, Kelly’s duties may need to be more distinct and directed.
Consistent, regular coaching from people who understand her abilities and need for support and can help her to navigate the unexpected can help to assure her success. Kelly occasionally needs someone who will take the time to help translate situations and expectations so she can adapt. Ideally, that support comes from a consistent staff member who knows Kelly.
In some cases, Kelly has not had adequate transportation to get to and from work. At one point, she had a job in Faribault. Kelly did not have a reliable system for getting from Northfield to Faribault. Some days her transportation showed up, sometimes it didn’t. She could get to work by taxi, which was not always reliable and was expensive. When the transportation system wasn’t reliable, Lynn or Randy would try to fill in. Employers often aren’t understanding when their employees don’t show up on time, or have to come and go from work regularly to attend to personal issues.
It took over three years for Kelly to receive funding for her transportation needs to assist her in keeping a job.
Housing and support to live HER life
Kelly’s life is not a bad life. It’s just not entirely hers.
As we reach adulthood, most of us look to establish lives independent from our parents. Kelly is no different. Lynn and Randy are both very supportive and encourage Kelly to live as independent a life as possible. Sustaining that effort, creating space for independence in a household with family norms, takes enormous energy and intention.
And Kelly would like to have her own place, where she isn’t subject to Mom and Dad’s questions and supervision, however well-intended it is.
The reality is that Kelly needs some regular assistance to live; finding affordable housing and reliable, consistent people to provide that support is extremely challenging in Northfield and across the country. Right now, Mom and Dad provide that assistance.
Kelly, Lynn and Randy are hopeful that Kelly might be a candidate for the intentional housing community that Laura Baker Services Association is working to develop. Ideally, that community will provide some affordable housing and natural supports for Kelly to take some of the pressure off Mom and Dad and to allow Kelly to create HER life.
Engaged and Supportive Community
While we are fortunate in Northfield that the community is supportive of people with disabilities living in the community, being supportive doesn’t necessarily mean being engaged.
As a society, we have been trained that we are not supposed to pity people with disabilities, and we shouldn’t help where help isn’t needed. That tells us what we’re NOT supposed to feel or do. It doesn’t tell us what we CAN do. Fearing being offensive or presumptuous, we often do nothing.
All of these stresses create hairline cracks in people who are intelligent, competent, capable. Those hairline cracks can become mistrust and withdrawal from the very communities that could provide support. A dangerous cycle.
What can I do? One example.
There are so many ways we can help, if only we don’t second-guess ourselves to keep from getting involved.
Here’s my example. I’ve known that Kelly lost her job for a few months. I’ve commiserated with her mom about it. Recently, her mom and I were having a conversation about the stress that this situation is creating for their family. I asked if I could talk to a couple of colleagues about job possibilities for Kelly, and the colleagues said they’d be willing to explore some possibilities. It took me 15 minutes to make the connections. It was a simple act. I don’t know if my support will solve the problem, but I realized again how taking one personal act and connecting the dots can be much simpler than we make it.
Your act of support might be to offer regular transportation – maybe one ride a week or to be ‘on-call’ for an emergency. You might look at open jobs in your own organization or where you volunteer to see if any can be reoriented to fit the skills of someone like Kelly. Maybe, you could offer a few hours of respite care for a family, or you might offer to be that unofficial ‘job coach’ to talk through issues with someone like Kelly who is struggling to succeed at work.
As community members, we can make the time get to know the members of our community, including folks like Kelly and her parents. As their friends and neighbors, we can support them like we do the rest of our neighbors. They will be happy to support us as well.
Make a Difference
The Honorable Paul Wellstone said, “We all do better when we all do better.” Here’s a simple way for us all to do better, day by day, hand in hand.