Recently five families shared their stories with me. I’m not sure how often you as a family member or person may feel blockaded by the answers you receive when you are trying to improve your situation. I thought “when it is not enough” would be a great way to convey some thoughts from these conversations.
When it’s not enough:
- Please don’t end the supports planning meeting with the same plan and level of support as the year before
- Please recognize the need. Please DO ask me what would really help. Jot down some notes. Tell me you’ll follow up.
- Look past my struggle or dissatisfaction to consider if there are other strategies to assist our family or me (self-advocate) with or without additional funding.
- Ask for advice/guidance from others if you need it.
- Follow up and visit me at home or at a convenient location for both of us to share one or more possible solutions.
When I call and it’s clear I need assistance…
- Please listen carefully. If you are at a loss at how to help me, tell me you’ll call me back in one day, one week, the time relative to how serious my call for help seems to be.
- Work with someone at your office or other agency to think through a solution.
- Get back to me and help me improve my situation at least a little.
And perhaps I’m someone or a family with a situation that you can’t help. I guess that could happen at a certain point in time. It would be good to be told that explicitly and what other alternatives there may be somewhere else. Perhaps your agency could develop a list of such situations to share with supervisors and with DDS so there would be a sense of what situations the “system of care” is grappling with. Sometimes we have square boxes for situations that need circles and triangle boxes for elliptical shaped barriers. And that requires changing the way we provide assistance. But we won’t know that unless we grapple with our limitations in a transparent way.
There are many creative, knowledgeable staff that I’ve met over the years who help people find a way to “Yes” or assistance. Don’t give up when you are reaching out, when you do need “Yes.” Watch this space for more on these topics.