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1.31.25 TDC Weekly Public Policy Update

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

We’re off to a testy and controversial start at Cordell Hull this year, with the special session wrapping up this week. And it’s no less frenetic up in DC. At very minimum, these are stressful times for our community – the uncertainty, the disrespect, the marginalization – all of these things seem to cast a pall over day-to-day life. And (to wrap up my pity party), it’s only January. But also, it’s only January. We’ve still got 11 months to get 2025 turned around – we’ve got a great slate of bills, some great sponsors (of whom we need a few more) and a great GRASSROOTS and community primed to change the world for the better. So, since my little pity party is over, let’s stiffen that upper lip and get to work. Onward!

 

The Important Stuff – 2025 TDC Priority Bills

  • 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
    • I hope I’m not jumping the gun, because I don’t have it signed and filed, but I believe we’ve found our Senate sponsor. And it’s…..
    • So, in theory, we’re set here with Sen Akbari and Representative (Chairman) Michael Hale
    • We’ve made some adjustments to the language recently, but I think we’ve gotten to the point of addressing our two goals
      • First, assure providers and caregivers that family members ARE ALLOWED to be paid through a provider agency, and disseminate standard policies to support that
      • Second, to ensure that no barrier remains in TennCare rules, MCO contracts, law or otherwise that bars family members from becoming paid caregivers
    • As soon as we’ve got it filed, I share the language
    • Next up:
      • Introductions
  • 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
    • We’ve for sure for sure got our sponsors here, Rep Michael Hale (2 TDC bills!) and Senator Becky Massey
    • Like Paid Family Caregiving (PFC), we’re waiting to get final language back from legal
      • And I’ll share it here when it drops
    • Next up:
      • Introductions
  • 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
    • I’m still on the hunt to lock down two sponsors, but I’ve got some pretty hot irons in the fire
    • I think we’ll start with the HRA component, but work with our sponsors to see about some of the other issues facing KB Part A families and the program
    • Next up:
      • Securing sponsors
  • Threats of Mass Violence Disability Protections – this bill would expand the protections for people with disabilities from being charged for a threat of mass violence, and provide some discretion to school personnel in reporting non-valid threats
    • We’ve got some work to do on this one, and increasingly little time
      • Bill filing deadline is February 6th, meaning that all bills that want to get heard this year need to be filed by then
        • So, 4 more business days
          • And the Senate is fully in recess next week
    • But this is still a worthy endeavor – kids with disabilities (and plenty of those without) are getting drawn into the criminal justice system for even the perception of a threat
    • I’ll be honest with you – I’m worried that the climate and/or vibe at the General Assembly is not conducive to achieving what we want in this space this year
    • We’ll have some conversations (and groveling) over the next 4 days before bill filing deadline
      • Let’s get something done here
    • Next up:
      • Sponsors and momentum
  • ECF Innovation Resolution – this resolution urges TennCare and the state to modernize the ECF CHOICES program to ensure that all members receive the types of supports and services that they need to live independent lives in the community
    • I’ve got some eyes on some sponsors, but this one is coming down to the wire too
    • But this one is important, because it starts an extremely necessary and extremely overdue conversation about the effectiveness of ECF CHOICES
      • Particularly for those with higher levels of need
    • Next up:
      • Securing sponsors

 

Other stuff:

  • HB6004/SB6001 – Universal Private School Vouchers/Education Freedom Act – creates a program by which all Tennessee students are eligible to receive a private school voucher worth approximately $7000
    • Ok, for the TDC family, this was the big one for special session
      • There were other bills, including bills related to immigration, that would impact Tennesseans with disabilities
        • But I don’t think this dispatch is the right place for that conversation
    • Getting the headline out of the way – Universal Private School Vouchers passed and will become law
    • Here are my concerns:
      • This spends $1 billion over the next five years, and not a single penny of that goes to improving special education
      • This uses public tax dollars to empower private schools to discriminate against kids with disabilities in their admissions policies, retention policies and practices
        • So, “education freedom” for whom? Not us, I guess.
      • I worry that, given the cuts to numerous revenue streams over the years (Hall tax, property tax increase caps, franchise and excise tax, etc.), we are creating a budgetary environment that could cause cuts to disability-related services
        • Or, in other words, the budget is getting awful lean, so when it’s time to trim more fat, we very well could be the fat
    • Of note and import, Representative Chris Hurt was a ROCK STAR
      • He introduced an amendment on the floor that said this:
        • (d) Notwithstanding subsection (b), a private school shall not discriminate against a student participating in the program based on the student's disability.
      • That is important on its substance – I highlight that concern above
      • But that is also important for the courage it takes and extent to which one’s neck is extended to do so
        • Floor amendments are generally frowned upon – this was on the floor on the marquis bill of the special session
        • Amendments to administration bills (from Governor Lee) are also frowned upon
        • Dissent on the issue of vouchers is VERY frowned upon
        • And Rep Hurt did all 3
      • Alas, the amendment did not pass, but it was the only amendment that was even allowed to have debate (and boy did it – watch it here)
        • And the debate raised the specter of reprisal during regular session in the education committees
    • It’s important to call out lawmakers and decision-makers when they do something bad, but it’s also important to let them know when they’ve done something good
    • Next up:
      • The Gov’s desk
  • HB498/SB321 – Reimbursement Rates Task Force – this bill would create a task force to make recommendations on the adequacy of reimbursement rates paid to health care providers
    • This one is sponsored by Good Friend Senator Becky Massey and Representative Dave Wright
    • I think this one pairs well with our Network Reporting Reform – it provides the empirical evidence that can inform the task force
    • Next up:
      • Committee assignments
  • HB28/SB284 – Car Insurance Parity for Visually Impaired Drivers – this bill prohibits car insurers from requiring that a visually impaired car owner purchase a commercial motor vehicle liability policy
    • This one is from Good Friend Rep Michael Hurt and Good Friend Senator Bo Watson
    • And this one is good – as it has been explained to me, people who are visually impaired who would like to own a car have been required to buy commercial insurance
      • Which is, by many magnitudes, far more expensive
        • And discriminates on the basis of disability, which is not legal
    • And to head this off at the pass, many people who are visually impaired own a car for the purpose of somebody else using it
      • For example, a visually impaired person owns a car so that their adult child can drive them to doctor’s appointments and the grocery store
    • We support this one, and hope you will too
    • Next up:
      • Committee assignments
  • Other other stuff:

 

Federal Update

  • So that was a wild week
    • First, essentially all federal funding, grants and loans (except Medicare and Social Security) was put on “pause” according to a memo from the Office of Management and Budget (OMB)
    • Then, a federal judge “paused” the “pause”
    • Then, OMB “rescinds” the memo
    • But then the White House said that the memo was indeed rescinded, but the Executive Order that was the impetus to the memo remained in full effect
    • What does that mean?!?
      • Honestly, I’m not sure
      • All 50 state Medicaid agency portals went down briefly, but the administration said that was a poorly-timed “glitch”
      • Most science and research grants are still on hold
      • And any entity, program or organization that gets federal grants is now in limbo, including important ones within the disability community
    • But this is what I have to say about this:
      • Keep your eyes on the prize – cuts are coming, but from where?
      • The great, one-time Policy Director at TDC, Courtney Atnip, introduced me to the idea of a “thought balloon”
        • A “thought balloon” is a controversial idea that a politician floats out there to rile folks up and learn from the reaction – what will the public accept? What crosses the line?
          • And then you pull the thought balloon back
        • But the balloon taught that lawmaker something, and it was on purpose – expect at least parts of the substance of the thought balloon to come back
          • And come back when you’ve got your guard down
        • So, eyes on the prize, stay vigilant and don’t let yourself be discouraged – that’s what the thought balloon was for, and don’t let the thought balloon win
  • And President Trump said some dumb stuff about disability in his response to the tragic aviation accident in DC
    • Don’t pay him no mind – we know how important we are, how valuable we are and the vast extent of our capabilities
      • So he can eat it on that, as far as I’m concerned

 

GRASSROOTS Update

 

Media Update

  • The Atlantic – when health care policy becomes politics, it is Americans, as well as people worldwide, who suffer.
  • K-12 Dive – do students filing a disability discrimination claim under the ADA and Section 504 have to prove that the discrimination was the result of “bad faith or gross misjudgment”? The Supreme Court is going to try to answer that question this session and the impacts could make it easier or harder for parents to get judiciary relief in the event of a FAPE lawsuit.

  • NY Times – the New York Times interviews Shane and Hannah Burcaw, who are famous (I hear) for their YouTube videos documenting their life as an “inter-abled” couple. Some really interested insights that reflect a lot of how society views people with disabilities and our place in the world. 

     

I don’t know about you, but I’m glad the special session is over; not because I approve of the bills that passed (I don’t), but because it means we can get started with our agenda. And I believe that our agenda makes Tennessee a better place, and I’m ready to start seeing some good things happen. Stick with me over the next 3+ months as we collectively work to build a better world. See you next week.