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3.21.25 TDC Weekly Public Policy Update

The Tennessee State Capitol building lit up at night and behind a set of ascending stairs

The end is in sight, for better or for worse. Read about it here!

 

2025 TDC Priority Bills

  • HB712/SB1178 - Freedom for Family Care Act – (aka Paid Family Caregiving: Part 1) this bill would prohibit TennCare from developing or implementing policies that discriminate against family caregivers in the provider-based employment
    • This one had a week off to marinate in its DDH glory, so no new updates here
      • It’s up in House Government Operations this coming Monday, which shouldn’t present much concern
      • And because its fiscal note was “not significant” (aka, it doesn’t cost money to implement), we skip the finance committees
      • So assuming all goes well in Gov Ops this week, we should be on the House and Senate floor in the coming two weeks
    • We also added a couple sponsors on each side, due to what I’m guessing is the impact of your advocacy at DDH!
      • So, sunshine and roses over here (for now) – let’s get this one to the finish line
    • Next up:
  • HB711/SB706 – TennCare Network Reporting Reform – this bill would require TennCare to collect and publish data about percent service utilization, appointment wait times and time between approval for a service and start of the service, broken down by county and waiver program
    • Gray skies and corpse flowers over here though
      • Note, nothing bad has happened here – the bill passed out of TennCare subcommittee easily this week
        • And has already passed through Senate Health
      • But looming over the horizon is the specter of the respective finance committees
        • And so we need to talk
    • Frank talk: the path to getting this bill both passed AND funded is extremely narrow, and unlikely to be traversed this session
      • AKA, the support is not there to conjure up $4.5 million to pay for the spreadsheet we’re asking for
      • TennCare threw one last amendment at the bill and promised to take the fiscal note and flag off the bill if we complied
        • But the amendment unded everything we wanted to do with this bill
          • It eliminated appointment wait time as a data point
          • It eliminated any delineation of data (by county, waiver program, benefit group, etc.)
          • It allowed for “statistically valid sampling” rather than raw, disaggregated data
          • It allowed them to “interpret the data themselves” and publish it buried in a year end report of fluffy consumer surveys and such
        • That’s not what we’re getting at, and TennCare knew it
      • So back to our frank talk, here is the most likely scenario with this bill:
        • It’ll be introduced in House Insurance on Tuesday, and I’m going to testify on the bill
        • I plan to let the committee know that TennCare wants to hide this information, because we all know their provider network has more holes than a golf course
          • And it’s not nearly as fun as golf
        • And then we’ll probably take it off notice, and try to get at this information next session
    • In my opinion, it’s still a Very Good Bill, and one that is foundational to improving the provider network
    • Next up:
  • HB1158/SB1053 – Katie Beckett Part A Wraparound Improvement Act – this bill would permit Part A families to utilize HCBS wraparound services funds using an HRA, similar to that in Katie Beckett Part B
    • This bill faces similar problems to those of the network reporting bill: it has been flagged by the department AND it has a fiscal note
      • But let’s talk about this fiscal note first: this should be an outrage to the General Assembly
        • TennCare gets $25 MILLION per year to serve up to 300 kids in part A
          • They have never filled all 300 slots
        • TennCare claims that they don’t have enough money for 300 children to utilize the full extent of their benefits, including the $15k for wraparound services
          • And need an extra $550k to do so
        • TennCare set the enrollment limit at 300, and provided the estimate for what that would cost! How do you not have the money?
          • Were you counting on making it so difficult to use those HCBS funds that you wouldn’t have to budget for it?
          • Not to mention, where did all the money go from previous years, when enrollment was not at 300?
        • And the GA did not pass Katie Beckett 6 years ago believing that people would only be able to access 18% of the benefits
      • I’m going to frame this fiscal note and put it up in my office as a prime example of the poor stewardship and bureaucratic disentitlement that characterizes TennCare
    • But I think we have a wider path to make this one work
      • It should be both a moral and fiscal outrage for the General Assembly to see TennCare ask for MORE money to meet their statutory obligations
        • And that they have been purposefully failing to meet their statutory obligations to facilitate the program for years, just to save some money
          • (which apparently, they don’t have now)
        • It is possible that the GA funds this as a “bailout” for TennCare, in part, out of spite
      • An interested reader could tune in next week and see testimony in both the House and Senate, tacking along both paths
        • We’ll have some families there to make the moral case
        • And I’ll be there to make the fiscal outrage case
    • To be clear, it is a narrow path to get there, but it’s one we’ll focus our energies on traversing
    • Next up:
  • HB1273/SB591 – Threats of Mass Violence Expansion – this bill would expand the types of facilities that would be subject to the enhanced felony penalty for a threat of mass violence
    • This one has been stalled out for about a month now, and hasn’t even been calendared on the House side
      • And we are very, very close to the last calendars for subcommittees, to which this one has been assigned in the House
    • This bill still doesn’t fix the school-based version
      • But its lack of progress might imply that support for the school-based version may be waning
        • But we’ll have to see if and when somebody moves to fix that one
    • Next up:
  • HB793/SB836 – Plyler Challenge Bill – this bill would allow public schools in Tennessee to refuse to enroll undocumented immigrant students unless they pay tuition
    • No new progress on this one (thankfully) – the bill was rolled to the coming week in Senate Finance, and was calendared for next week out of K-12 sub
      • Like I said last week, it feels a bit wobbly
        • But taking a week to work on it makes me wonder if they are righting the ship
    • As a reminder, here are our concerns:
      • The bill could lead schools to violate the “child find” clause of IDEA, which requires schools to go find kids with disabilities in their communities and offer them services
        • With the explicit language including “migrant children”
        • Nobody has squared this circle
      • The bill allows schools to charge tuition to students who cannot demonstrate their citizenship status
        • Which would violate IDEA’s foundational tenet in the provision of a “FREE and Appropriate Education” (FAPE)
        • Nobody has squared this circle
      • The bill jeopardizes our federal funding in potentially violating SEVERAL civil rights laws even beyond IDEA
        • But this is the point, they want to pass what is a facially unconstitutional bill for the purposes of re-litigating Plyler v Doe at the Supreme Court
    • I don’t think any concern about the excess cost of serving undocumented students trumps the civil rights laws they are hoping to undo
      • Because, once again, Tennesseans with disabilities, in this case kids, are catching strays from the culture wars
        • In ways that fully jeopardize our ability to live, work and thrive in our communities
    • Next up:

 

Other stuff:

  • HB133/SB110 – Residential Pilot Programs – this bill would exempt an organization in East Tennessee from the state’s 4-person/500-yard anti-institutionalization rules
    • So, this went poorly
      • The bill passed out of House Health Sub, with our amendment to require reporting to the department and a determination of success from the department, no problem
      • And, to quote, advocates for the bill affirmatively claimed to “welcome and encourage accountability”
    • But, as many things at Cordell Hull do, this welcoming attitude ran aground against other interests and ulterior motives
      • A certain lobbyist who represents a certain residential pilot program in West Tennessee thought that these “pilot programs” should not have to prove that they are doing a good job in order to make their “pilot program” permanent
      • And so he went around arguing that our amendment was a “poison pill”
      • But, we didn’t have the chance to argue on behalf of our amendment, because the damage was done
        • Chairman Terry told Good Friend and Good Guy Rep Michael Hale, who is graciously advancing the bill on behalf of Rep Kevin Raper, who is recovering from a liver transplant, he would not consider the amendment in the House Health Committee
        • And I wasn’t going to ask Rep Hale to spill blood on this one
    • If I had the chance to argue on behalf of the amendment, I’d say this:
      • I don’t care about anybody’s “investment” in these pilot programs, I care about the people with disabilities who live there
      • If you can’t, after 7 years, prove that you’re doing a good job, you should not be allowed to continue
      • And that is all that our amendment did – it changed language that automatically made these “pilot programs” permanent to contingent on good outcomes
        • That’s it
          • And that’s how a “pilot program” works
      • And, as I told everybody at the General Assembly, if they came back in 7 years with good outcomes, maybe we’d have to reconsider our stance on residential pilot programs here at TDC
        • But now that there is absolutely no accountability, I don’t see how they can possibly change our mind about this
          • Further limiting any “new” or “innovative” solutions to the disability housing crisis
    • We acted in good faith here, agreeing to essentially defer on the bill (which we continue to principally oppose in substance), with the understanding that supporters and sponsors would act in good faith in return
      • And this wasn’t the case – instead it’s just another bad moment for the disability community
    • Next up:
  • HB522/SB386 – Early Warning Signs List – this bill requires schools to establish a system by which school personnel are mandated to report “early warning signs” from students indicating a concern about a wide variety of student issues
    • So, I haven’t discussed this bill yet, but it’s a concerning bill for a number of reasons
      • It requires reporting on such a wide variety of things, from emotional/behavioral issues to bullying to threatening violence, that it melts all “concerns” into a vague cloud of “bad stuff”
        • And leads teachers and administrators to begin to take them as all equal, making them easier to dismiss
      • It adds another thing to the plate of teachers and admins
      • It doesn’t offer anything other than being placed on this “watch list”, let alone require it
        • Things like a threat assessment, or a special ed evaluation
        • And it can be conflated with these things, leading to placing a student on a watch list rather than helping them
      • It’s a “solution” in search of a “problem” – we have tools in place to address concerns about student behavior or emotional state
      • What about privacy?! How will student’s right to privacy be protected if we’re scraping their lives for “concern”
      • And it’s yucky – the people behind this bill (Raptor Technology) happens to have a piece of software that schools can use to meet their obligations under this bill!
        • So it’s using kids with emotional or behavioral concerns to facilitate a payday for this company
    • Ultimately, it’s a Very Bad Bill that threatens to harm students with and without disabilities, while minimizing the use of strategies (many of which are legally required) that we know work
    • Next up:
  • Other other stuff


Federal Update

  • Ok, it’s happened – President Trump has signed an executive order directing US Secretary of Education and Wicked Witch of the South Linda McMahon to begin to dismantle the federal Department of Education
    • This is concerning, and presents many unanswered questions
    • The federal Department of Education, for 5 decades, has ensured that students with disabilities have access to a free and appropriate public education
      • The Department is responsible for administering funding for special education
      • The Department is responsible for enforcing IDEA by ensuring state-, school- and classroom-level compliance
      • The Department is responsible for evaluating and acting upon school-based disability discrimination complaints
      • The Department is responsible for providing technical assistance to states and schools about their responsibilities under IDEA, best practices and new innovations
    • We don’t know what is going to happen to any of these responsibilities, but I do know this:
    • While the executive order directs McMahon to dismantle the Department, that’s not technically legal
      • The Department was established by Congressional act, and thus, must be dismantled by Congressional act
        • Republicans, who own majorities in both chambers, have said they will propose legislation to do so
          • But it is VERY unlikely the Senate can come up with 60 votes to pass it
    • Trump has stated that the Department will “retain core functions” like title 1, Pell Grants and funding IDEA
      • But that is not in his executive order, and there is no further directive about it
        • Which means I don’t trust the statement to be fact
    • But what can you do about it?
    • And to note, this is part of a larger attack on the disability community – we’ve seen threatened cuts to Medicaid, revocations of ADA guidance, a challenge to Section 504 of the Rehab Act, all at the federal level
      • At the state level, TennCare and the Gov sent $100M in shared savings to Hurricane Helene relief instead of spending it on the Medicaid population, our GA is trying to challenge Plyler v Doe which threatens numerous civil rights laws and precedents and we continue to increasingly criminalize manifestations of disability
      • Sometimes, these are just catching a stray – they mean to punch somebody else but didn’t see us standing there and we caught one right in the kisser
      • Sometimes, these are more purposeful, not for the purposes of explicitly harming the disability community, but more so disregarding our opinion and expertise
      • And sometimes, they are malicious, bred of a poor understanding of disability and a desire to homogenize our communities
      • Stay strong friends – this isn’t the first time we’ve been targeted (or caught too many strays), and it won’t be the last
        • But that means we’re more ready than anybody else in the crosshairs
           

GRASSROOTS Update

 

Media Update

  • NY Times – short filmmaker Jonatas Rubert reflects on his brother with Down Syndrome, and how he saw him fit into the world (and how his brother, Tiago, saw himself in the world. It’s an interesting (but not universal) meditation on human difference.
  • NY Times – 2 Times stories! This one is an opinion piece about the “rise” of autism and an attempt at an explanation. I think, contrasted with the above docu-short, we see a measured take on a sensitive issue, and a rebuke of other, more malicious explanations for the rate of autism.
  • Knox News Sentinel – Hayden Dunbar does an EXCELLENT job laying out the case for our Freedom for Family Care Act, highlighting Rockstar advocates in the Bush family and the need for better support for family caregivers. 

 

Don’t despair (too much) friends, not all is wrong with the world, and not all that’s wrong with the world is permanent. It’s why we do what we do, and why our perspective, as the disability community, is so important. The world might appear to be rolling backwards sometimes, but let’s remember that our community is where we are today because of the last 50 years or so. That is a split-second in the arc of justice. And we are a strong community – both because of the improvements we’ve made to the world, as well as our continued existence fighting in it. So long as we’re still fighting for ourselves and our community, the world has the potential for positive change. That’s us. So keep fighting, friends and readers, the world needs us.