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2.21.25 TDC Weekly Public Policy Update

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


Sorry I missed you last week, I was traveling with my family to Washington DC to (belatedly) celebrate my daughter’s 4th birthday – she loves trains and dinosaurs and what could be better than riding the Metro to the Natural History Museum to see dinosaur bones in Washington DC if you just turned 4? On the (twice-delayed) flight back, the trip got me thinking about how different a 4 year old is from a 3 year old, and just how long 4 years is and how much can change in that span. 4 years ago, I was a sleep deprived new father watching the TDC team pass a bill to protect people with intellectual disabilities from being executed by the state. That was somehow 4 years ago. Since then, I’ve resumed sleeping and watched just how much things can change in such a nominally short span. Since that time, TDC has passed legislation to prohibit clawback of funds in an ABLE account, two wheelchair repair bills, a corporal punishment in schools bill, a Medicaid Buy-In bill and passed a resolution to establish a paid family caregiver program. The kid has been potty-trained, sleeps through the night, likes Bluey and soccer and cats and painting; she’s kind and generous capable of belligerent obstinance when she thinks she’s right. 

 

The point here is that each moment is inherently fleeting, as are the things that mark those moments; it may seem overwhelming when so much is happening at once and we have little control, and it may seem like this is the start of a forever-period. But it’s not. One week in legislative time is an eternity, one year in DC time is an eternity and four, five, or ten years from now, the world will without exception be a different place. Just as we do with kids, we do what we can in each moment to make sure that 10 years from now, we have created something better than what came before (I’m not watching Bluey forever, I hope she knows). So stick with me, and we can find the right moments that helps to build a better world in the face of what feels like chaos and backsliding – it’s what we do and it’s what we will do. 

 

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
    • No real updates here yet, we’re still waiting to get on the calendar
      • I’m thinking not next week, but the following
        • I’m going to sit down with the sponsors in the coming week to chat, and I think we’ll be ready to go after that!
    • I did want to share a copy of our 2025 Campaign Kickoff Webinar from a couple weeks ago, in case you weren’t able to attend
      • Avid readers and consumers of TDC content may know most of this stuff, but for those who haven’t heard my spiel, the context of our work or the history of the campaign, it might be helpful
    • Next up:
      • Committee assignments – week of 3/3?
  • 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
    • Unlike paid family caregiving, this one had some real action on it over the past two weeks
    • The bill was sort of unexpectedly calendared, set to be heard in the Senate Health and Welfare Committee this past Wednesday
      • Gotta start somewhere!
        • And alongside the calendaring on the Senate side, we decided to do the same on the House side
          • To try to keep them on track together
      • This abrupt calendaring got the attention of TennCare and their friends the MCO’s
        • Who had “concerns”
        • Given the “concerns”, we decided to roll on the House side
      • But Senator Massey would not be deterred on the Senate side
        • A President’s Day and some snow compacted the amount of time we had to work on this, which culminated in a meeting with TennCare on the Wednesday morning it was to be heard in committee
      • From such a meeting we found that, besides a couple of innocuous quibbles, TennCare mostly thought that the bill presented “operational difficulties”
      • So, we’ll address the quibbles via amendment and take them to task in committee for their lack of self-regard in “operationalizing” a difficult task
    • I don’t have a GRASSROOTS task for you all yet – our GRASSROOTS energy is better spent down the line (assuming we get there) working to secure funding to accommodate that absurd fiscal note
      • But I’ll let you know
    • 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
    • In a holding pattern here while we let the dust settle on the session
      • In attempting to forecast the weather, I think getting on the calendar sometime around DDH 2025 might be my guess
    • Next up:
      • Calendaring
  • 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
    • Just a reminder that we don’t have a bill on this one for the present session, but that doesn’t mean we aren’t working on it this year
    • It’s important to note that there is a bill out here meant to address threats of mass violence, but not in the way that we hoped
      • The bill expands the types of facilities that would be subject to the enhanced felony penalty for a threat of mass violence
        • Churches, child care agencies and preschools
      • This bill has some problems – in theory, this means a 3-year old could be charged with telling a preschool teacher that they intend to blow up a daycare
    • But this absurdity presents an opportunity
      • Charging a 3-year old, or even having the capacity to do so, is facially absurd, wrong and counter-productive
      • This perhaps presents an opening to discuss other facially problematic components of the concept
        • What if we:
          • Established an age floor?
          • Treated external threats and threats made by students differently?
          • Added additional disability protections?
          • Aligned this law with the threats of mass violence zero-tolerance law?
    • But any opportunity to address this issue is going to be dependent on the General Assembly’s (and sponsor’s) willingness to look past their intentions and instead to the impact, especially for children with disabilities
      • And these are good intentions – perpetual disclaimer being that no student deserves to learn under threat of violence and no teacher deserves to work under threat of violence
      • But that willingness requires putting a human face to the impact, as well as the concerns of the GRASSROOTS
        • And boy oh boy, would DDH be a good time to engage the GRASSROOTS on this
          • We’ll ensure you have the information, materials and opportunities to do your GRASSROOTS thing on March 12th
    • Next up:
      • Workin’ on it
  • 5th Priority Bill
    • I haven’t decided yet, let’s see how it plays out over the coming weeks

Other stuff:
 

  • HB870/SB420 – Co-Pay Accumulators – this bill prohibits health insurance companies from exempting medication financial assistance from countable payments to a deductible or out-of-pocket expense limit
    • So, this one is sort of complicated, but I wanted to highlight the bill for a couple of reasons
      • First is purely personal – this bill and the time-consuming fight it incurred in Senate Commerce saved our wheelchair repair bill last year, which was doomed to fail should it have been heard – so kudos to the brawl
      • Second, it’s an example of the creative means by which private insurers can and will extract money from consumers, often through opaque and hard-to-understand means
      • Finally, it’s a good bill
    • So, some medications, and I don’t need to tell you this, cost tons and tons of money
      • Manufacturers of these expensive drugs will often offer co-pay assistance, or other forms of financial assistance (like rebates), to consumers to help them afford it
        • For them, this increases sales, allows for preferable treatment of the drug brand and develops customer loyalty, so they say
      • For example, say a drug for Multiple Sclerosis, Kesimpta, costs $1000 per dose.
        • Kesimpta wants to be the primary drug brand prescribed to MS consumers, so they offer a rebate to lower that cost to $100 for the customer (and make their brand more appealing)
        • Kesimpta makes a deal with a Pharmacy Benefit Manager (PBM) to negotiate with insurance companies to lower the cost of Kesimpta by offering the rebate to consumers in exchange for preferential treatment
        • The PBM takes a cut of the rebate amount and passes the rest off to the consumer who pays a lower cost
        • Now the consumer uses the drug brand, the PBM gets a cut, the insurance company has lower spending and the manufacturer has a larger sales base
        • It’s not perfect, but for many who use expensive drugs, it’s the only way
    • Now, that’s a lot of money flowing around, and as we know, the health care and insurance industries are often for-profit enterprises
      • Insurance companies want their customers to pay down their deductible, so as to maximize profits
        • They also want money passing through them from, say, PBM to consumer, to stay with them instead
      • In the past, most if not all spending counted towards the deductible, until insurance companies began exempting co-pay assistance payments from counting towards the deductible
      • That reduced the amount of savings actually passed on to the consumer, and took an extra share of the rebate for insurance companies
    • This bill requires insurance companies to count co-pay/financial assistance payments, like the rebate from Kesimpta, to count towards out-of-pocket spending maximums and the deductible
      • And this is the battle – insurance companies vs drug manufacturers (and PBM’s) fighting for the bigger share of the pie
    • To us, those who use expensive drugs, it is beneficial (at least in the short term) for drug manufacturers to win this battle, because that allows us to receive a big share of the financial assistance pie
    • The bill hasn’t started moving yet, but if you’re looking for a big, nerdy policy brawl, mark your calendars for whatever day it hits Senate Commerce
    • Next up:
      • Calendars
  • HB1244/SB881 – PBM Reform – this bill establishes quality standards for the operations of Pharmacy Benefit Managers (PBMs)
    • So, in the co-pay accumulator drama above, the PBM’s were (generally) the good guy
      • But like insurance companies, they also have a profit motive, which can sometimes make them the bad guy
        • Others see PBMs as the bad guy as a more constant state of affairs
    • However, that profit motive leads PBM’s to take creative measures to extract more money from the health care spending pie
      • They may, for example, delay or dispute claims from insurance companies and health care providers
        • Sometimes, they may do this in an attempt to deny the claim in the long term, and others to start a war of attrition over parts of a claim, hoping the provider/payer eventually gives up
    • This bill attempts to standardize the procedures by which PBM’s pay a claim in order to avoid any of those creative means of eating the pie
    • PBM reform has been a constant for as long as I’ve been in this job, to varying degrees of success at the General Assembly
      • This one, I think, has a chance – it simply establishes guidelines by which a PBM operates, rather than establishing or prohibiting a practice, which is a harder sell
    • Like the above bill, this one hasn’t seen a calendar date yet
    • Next up:
      • A date
  • HB1330/SB1316 – Less is More Act – this bill establishes means by which members of a in governing body can participate in the proceedings virtually
    • So, as the keen reader of this dispatch will perhaps notice, this is getting at something we wanted to achieve this session about virtual participation in governing bodies
    • But, for the most part, this gets at what we were getting at, just not in disability language
      • (ours said you have to follow the ADA, which, duh)
    • The bill lays out the parameters of virtual participation in councils, working groups, boards, etc.
      • And includes a lot of flexibility, which is what we were hoping an ADA accommodations clause would accomplish
    • It’s not everything we want, and it’s more complicated than “follow federal law”, but I think it meets the mark
      • For now
    • Note: this bill also contains a lot of other stuff, some of which we like, some of which we don’t – this description is not an endorsement of the bill as a whole, simply the part described above
    • Next up:
      • A date
  • Other other stuff:

Federal Update

 

GRASSROOTS Update

  • In anticipation of DDH 2025, it is now probably a good time to reach out to your legislators (if you haven’t already) and introduce yourself
    • You don’t need to set a meeting now, but your meeting will be all the better if you know each other a bit
      • You could introduce yourself and your family, mention you’ll be there at DDH, and build that relationship
  • Otherwise, when it comes to our priority bills, hold your fire, GRASSROOTS
    • For the network reporting bill, our best bet is to you use you come budget time (assuming we get there)
    • For paid family caregiving, we’ve got to get a calendar date first
    • For KB Part A, samesies as above

 

Media Update

  • ASAN – the Autism Self-Advocacy Network put out a statement decrying President Trump’s comments about autism in an address discussing Make American Health Again Commission. The President said autism (and other disabilities) are “a dire threat to the American people and our way of life”.
  • The New Yorker – what would it mean for students with disabilities if the federal Department of Education were to be dismantled? It wouldn’t be great, says the New Yorker
  • The Atlantic – these are tough times for many, and there is nowhere worse to be during tough times than on the internet. Arthur Brooks has some suggestions about draining that toxic sludge that is social media from your bloodstream.

 

One day at a time, friends. While each day has the potential to bring us something new to worry about, it has that same potential to bring us something good. It’s difficult to control that. But we can better control what is close to us, and when times feel dire, I think it’s important that we try to focus on those things that are close to us: our families, our community and the work we do as advocates. Since that time 4 years ago, when I was drowsily watching TDC and the Tennessee disability community do its thing on something as heavy and consequential as the death penalty, I’ve learned one thing for certain: this community is strong and it can make things happen. Let’s not forget that.