"Someone should do something..." that "someone" is YOU!
In the last couple weeks, I presented to a gathering of families wanting to learn how to get involved in advocacy and separately visited the Texas Capitol in Austin with the Leadership Boerne class of 2025 of which I am a member for its "Capitol Day," touring the building and meeting elected officials relevant to Boerne and Kendall County. (read all the way down this message for what else we saw while we were at the Capitol)
In doing both, I was reminded about why it is so important that we put in the time and effort to fight for the rights of our sons and daughters with IDD to live in the setting and manner of their choosing. Advocacy is one of the 3 pillars of LTO Ventures' business for that reason.
In my presentation about advocacy to the families, I had a slide that included these bullets:
It starts with just showing up.
Speak up. You don't have a voice if no one ever hears from you.
You can't affect outcomes if you never try.
"Someone should do something...that 'someone is YOU!"
Impact in numbers. Who else has this issue?
There are many ways to advocate. Some involve almost no effort, some involve a significant commitment of time, travel, and thought. All are important. Here is what I told the families:
Volunteer.
Fundraise / donate.
Attend webinars, town halls, advocacy meetings.
Share, post, tag on social media.
Submit public comment.
Testify at hearings - in-person or virtual.
Call and/or write your representatives.
Subscribe / join / follow advocacy groups for messaging and tactics.
Serve on committees / boards.
Complete surveys.
Vote.
Does It Ever Make a Difference
Yes. Here's a great example. In April 2022, the Texas Health and Human Services Commission (HHSC) faced a March 2023 deadline to bring the state's Medicaid HCBS waiver programs into compliance with the federal Final Settings Rule. HHSC published a call for stakeholder input for its HCS, CLASS, TxHmL, and DBMD waivers. The proposed changes covered HHSC regulations, the Texas Administrative Code (TAC) underlying the regulations, and the waiver amendments with the Centers for Medicare and Medicaid Services. Because of delays in notifying the public, we had only 20 days to the public input deadline.
So we worked the problem. A core group of settings providers, families, advocacy organizations, and self-advocates quickly rallied together a statewide coalition. We developed a strategy to all ask for removal of "110 bad words" from the regulations that effectively barred adults with IDD from using waiver funding for their supports in community-based settings we typically call "intentional communities," and to add in Heightened Scrutiny to help adjudicate related disputes. Below is how HHSC reported on our efforts:
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"The draft rules were posted on HHSC’s website for informal comment from March 11, 2022 – April 1, 2022. HHSC received approximately 1006 comments and questions from 752 stakeholders. HHSC reviewed and considered the comments and questions.
Several hundred commenters (74 percent of comments received) expressed that the provision in the HCS Program eligibility criteria describing a prohibited residential setting, specifically, a setting in which two or more dwellings create a distinguishable residential area, is more restrictive than the federal HCBS settings requirements and makes individuals living in intentional communities, farmsteads, or campus settings ineligible for HCS Program Services.
The commenters consisted of intentional community organizations, persons who work at intentional communities, family members and friends of individuals who live in intentional communities, and other advocates of intentional communities. Many of these commenters expressed support for and may have been mobilized by one or more intentional communities.
In response to these comments, HHSC removed the provision from the eligibility criteria and, instead, included provisions in proposed §263.501 consistent with 42 CFR §441.301(c)(5)(v) regarding settings that are presumed to have the qualities of an institution and that address a heightened scrutiny review conducted by CMS."
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Bottom line: Our advocacy campaign was successful because people who would be impacted directly or even tangentially answered the call and made their voices heard.
We Need Your Help Again, Right Now
Community-based Direct Support Professionals (DSPs) are the paid staff that support individuals to live as independently as possible in the setting of their choosing. They are primarily paid with waiver funds. Two years ago, the Texas Legislature raised DSP wages from $8.11 per hour to $10.60 per hour. This is disgraceful and unsustainable. More than 230 group homes and ICF settings shut down in 2023 due to inadequate wages and the trend continued into 2024.
The current Legislature is proposing $12.00 per hour, also disgraceful. We are asking for community-based DSP wages to be raised to parity with wages paid to DSPs at Texas' State Supported Living Centers, or $17.50 per hour. To do so would require only an additional $317 million in General Revenue funds over the next two years, less than 1/1000th of the proposed Texas 2026-27 budget of $330 billion.
You can help. Visit www.TimetoCareTX.org, download the materials, sign up for email alerts, and take the actions they advise to make your voice heard. Remember, the someone who needs to do something is YOU.
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