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  • What should I discuss with my local legislator?

    Posted by deann-r on November 24, 2023 at 9:00 am

    As most of us are painfully aware, finding and retaining caregivers is no easy task. Recently the agency I go through reached out with a possible chance to meet in-home with a local legislator to discuss the importance of the services I receive. I said yes to this opportunity.

    Now I’m panicking a little bit. They just reached out to confirm availability, so there’s a chance it might happen.

    In-person, I’m afraid I won’t be well-spoken enough to get my point across. I also don’t want to come across as entitled but want to convey that these services are important for not just me, but for many of us.

    What things should I bring up? It sounds like the meeting would last about an hour.

    Hopefully, I’ll not only be able to discuss the caregiver dilemma but also touch on housing and transportation challenges as well. How do I put a positive spin on things to not sound like I’m complaining? This advocacy thing is hard. Help!

    ari-anderson replied 7 months, 1 week ago 5 Members · 5 Replies
  • 5 Replies
  • micaela-macdougall

    November 24, 2023 at 4:32 pm

    I’m not very experienced with advocacy, but for what it’s worth:

    I don’t understand why it matters if you sound positive or like you’re complaining. You’re not navigating conflict with a loved one, you’re advocating for your basic human rights. My strategy would be to not worry too much about my tone and stick to the facts – this is what I need to live a normal life, this is what I’m getting, here’s the gap between those two. I would personally be more worried about downplaying the valid problems you’re addressing, than about having a negative tone.

  • alyssa-silva

    November 27, 2023 at 9:48 am

    I agree with everything Micaela said. Stick to the facts. Don’t be afraid to get vulnerable. I’ve found that the most progress I’ve gotten with legislators is when I openly and honestly share my story and struggles. Don’t just say you need x, y, and z. Paint them a picture of what it’s like to not live with those things and that will help get your point across.

  • mike-huddleston

    November 29, 2023 at 3:28 pm

    I agree wholeheartedly with what both Micaela and Alyssa said. Painting a picture of your experience is critical to educating them. They apparently are seeking this type of information; glossing over it so it doesn’t sound like you’re complaining may make it seem like less of an issue than it is. Micaela’s “here’s what I need, here’s what I get and this is the gap” is amazingly powerful. Folks have no idea what the experience is, so lay out the facts and see where it goes. It may also be worth asking what they’re planning to do with this information. In other words, is it actionable or lip service? Offer your willingness to participate in ongoing discussions. And finally, as far as feeling like you may not be comfortable speaking, this is what I told myself when nervous in preparation for presentations when I served as a BioGen Spinraza ambassador: This is my story – mine – no one knows it better than me. You’ll be fine!

  • deann-r

    December 2, 2023 at 10:26 am

    Thanks for the encouragement! I haven’t heard anything after they checked my availability, so who knows if it’ll even happen.

    • ari-anderson

      December 5, 2023 at 2:19 pm

      Hi Deann,

      Did you ever find out anything more about if you were going to meet with your legislator? I’ve met with dozens and dozens of legislators over the past 20+ years, so I know a thing or two about it.

      What everybody is saying here is totally correct, it’s important to paint a picture of your situation. If you can, you could give him a quick demonstration of the care you receive if the legislator is coming to your house. Or better yet, you or someone you know could make a 2-3min. video showing your care. The legislator could watch the video with you and then take it with him or her. You could say that you need caregivers to do the care you saw because your parents can’t do it all.

      Besides learning about your situation, most legislators care about how cost effective would it be if you had more caregivers. Maybe talk about how your lack of caregivers is putting you at greater risk of being hospitalized or institutionalized. Home care is usually way less expensive than if you were institutionalized. If you get the exact cost figures of how much less expensive it is for you to receive caregivers in your home vs. going to institution it would make your argument really powerful.

      It’s a sad fact, but most legislators really care about the bottom dollar. Let me know if you have any more questions. You never know when you might have to advocate.

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