I believe in good things, dear reader. I believe in the long arc of justice, and I believe in “we shall overcome”, I believe in a righteous order of things. But it’s hard to hold those beliefs sometimes, and it’s hard today. What’s easy to believe in though, at this moment in time, is you, dear readers. I believe in the Tennessee disability community; I believe that we, of all people, know that progress is slow, halting, sometimes backwards, but ultimately worthy of pursuit and worthy of blood spilled. We believe in progress nonetheless. I also believe in the responsibility we hold with that power of experience, with that knowledge of things lost and won. We are the canary in the coal mine, we are the tip of the spear. And I know, at least I, relish that role – and I saw brave parents take that role this week, and take it with gusto. When we stand up for ourselves, when we build a world that works for us, when we draw our lines in the sand and hold firm, we do it for everybody. Universal Design: if you build it for those who need it, you’ve built it for those that don’t, and that covers everyone. Don’t become downtrodden, and don’t get cowed; we are needed in the fight, and I believe in one virtue above all: generosity. If you’ve got something to give, and you can give it, then you should. We’ve got this power, TDC family, and we should give it. Onward.
- 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 puppy is sooooo close – it passed unanimously on the Senate floor on Monday
- And is set to be heard on the House floor this coming Monday
- I anticipate zero problems, and I anticipate that it will head to the Governor’s desk on Monday afternoon
- And is set to be heard on the House floor this coming Monday
- This was a big one for us this year, and sets the foundation to truly build out a comprehensive paid family caregiving program in the state
- It’s not perfect, and we had to take an unwelcome amendment from the state, but it’s the kind of start we need for big change
- And none of this happens without you, dear reader, and the GRASSROOTS too
- It’s not perfect, and we had to take an unwelcome amendment from the state, but it’s the kind of start we need for big change
- Next up:
- This puppy is sooooo close – it passed unanimously on the Senate floor on Monday
- 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
- No new news on this one – we took so long on the Katie Beckett bill in House Insurance (details forthcoming) that we didn’t get to this one on the calendar
- No new changes to the ultimate fate of this one either, unfortunately
- The cost of the bill (which remains an absurd estimation) dooms its fate
- Unfortunately, the appetite (and the money) just isn’t there for an unsexy (to them) TennCare accountability bill this year
- But, on the plus side, we got this conversation started, and the members are open to the idea that TennCare isn’t the Golden Child they think it is
- So next year, let’s build out the public support necessary to get this one paid for
- And from there, we can begin to hold TennCare accountable to fixing its problems
- Next up:
- No new news on this one – we took so long on the Katie Beckett bill in House Insurance (details forthcoming) that we didn’t get to this one on the calendar
- 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
- Let’s start with the good news: this one passed Senate Health and Welfare unanimously on Wednesday
- All smiles – so many smiles, in fact, that our intrepid advocates who came down to testify on the bill weren’t even called!
- But that is the point – to pass the bill
- All smiles – so many smiles, in fact, that our intrepid advocates who came down to testify on the bill weren’t even called!
- So, the bad news: this one has not yet passed the House Insurance Committee
- Please note: it has not failed, it was just not voted upon
- I and another intrepid advocate testified on the bill, and our testimony was well-received!
- But it was so well-received, that the Insurance Committee demanded that TennCare account for the things our testimony discussed
- Like price gouging, denials, the responsibilities of the MCO’s, etc.
- It was and will be my responsibility to connect the dots for our lovely Citizen Legislators
- All those problems you’re concerned about? They get resolved by passing this bill
- And you are welcome to yell at TennCare, just pass the bill please
- We still have the fiscal note/Finance hurdle to clear, but we’ve got to get through the House Insurance first
- (Weekly reminder: this fiscal note is trash. TennCare claims they do not have the money for this, despite their statutory obligation to pay the benefits – that is fiscal mismanagement if I’ve ever seen it)
- Next up:
- Let’s start with the good news: this one passed Senate Health and Welfare unanimously on Wednesday
- 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
- I’m gonna make a call here: this one is dormant for the year
- They’re just running out of time
- But this is a good thing! I think the tide might be turning on charging children with felonies for speech
- They’re just running out of time
- Next up:
- House Criminal Justice Subcommittee – TBD
- Senate Floor – TBD
- I’m gonna make a call here: this one is dormant for the year
- HB793/SB836 – Plyler Challenge Bill – this bill would allow public schools in Tennessee to refuse to enroll undocumented immigrant students unless they pay tuition
- This one passed the House Education Committee on an 11-7 vote
- The “no’s” were bipartisan, but not enough in numbers
- And thus, it heads to the respective Finance committees
- The “no’s” were bipartisan, but not enough in numbers
- The Finance Committees will be an interesting litmus test here – is the state of Tennessee willing to lose federal funds for the chance that the bill might make it to the Supreme Court?
- I mean, the bill is a walking lawsuit, and will likely be enjoined before it can even take effect
- But, what if it doesn’t?
- They won’t kill it in the Senate – Senator Watson sponsors the bill and chairs Finance, and they just don’t do that
- So our reprieve from this nonsense lies in the House
- Do they have a backbone there? I haven’t seen much evidence of it, especially when national attention and personal striving are involved
- So our reprieve from this nonsense lies in the House
- I mean, the bill is a walking lawsuit, and will likely be enjoined before it can even take effect
- And another weekly reminder: this bill violates the Supreme Court precedent set in Plyler v Doe, but it also likely opens the door for schools to violate IDEA (child find and FAPE)
- And I don’t know about you, dear reader, but I’m pretty darn tired of the disability catching strays
- It’s an ugly and problematic bill that serves no good interest, or at least none that overcomes the strays we’re catching
- In my opinion, we are a country where nothing is impossible; where, when we put our mind to it, we can accomplish incredible feats that benefit not just Americans, but humanity as a whole.
- And I think that building an educated and engaged polity is what makes the impossible not just possible, but likely in America
- And to cut people off at the knees by refusing to educate them, regardless of who they are or where they came from, is the definition of cutting of one’s own nose to spite one’s face
- And that’s stupid, in my opinion
- Next up:
- This one passed the House Education Committee on an 11-7 vote
Other Stuff:
- 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
- Ding dong, this one’s dead!
- Senate Ed saw right through this one and voted it down 5-4
- Congrats to intrepid advocates Zoe Jamail with DRT and Robbie Faulkner with the Arc, whose testimony (last week) beget the bill’s demise (this week)
- This is a win for the disability community, and perhaps the start of some different thinking about how we treat behavior in the school setting
- (Maybe)
- This is a win for the disability community, and perhaps the start of some different thinking about how we treat behavior in the school setting
- Next up:
- The bottom of the trash bin
- Ding dong, this one’s dead!
- HB870/SB420 – Alternative Funding Programs – this bill prohibits health insurance companies from requiring individuals to enroll in an “alternative funding program” in order to access specialty medications
- This is a complicated bill, that addresses a complicated issue (made more complicated for the purposes of being complicated)
- So this bill addresses access to specialty medications, which are often very expensive medications
- I don’t need to tell you, dear reader, that fact
- The cost of specialty medications is often deferred for the consumer by the use of financial assistance programs, most often offered by the drug manufacturer
- They offer these to help people afford their medication, make it more likely that doctors prescribe it and to undercut the costs of competitor medications
- The benefits/savings of those financial assistance programs are intended to go to the consumer
- But along the line, they pass through several entities, including the insurance companies, pharmacy benefit managers, specialty pharmacies and medical providers
- And they all want a cut of those funds
- But along the line, they pass through several entities, including the insurance companies, pharmacy benefit managers, specialty pharmacies and medical providers
- The cost of specialty medications is often deferred for the consumer by the use of financial assistance programs, most often offered by the drug manufacturer
- In order to get a cut of those funds, health insurance companies will exclude your medication from coverage and require you to enroll in an “alternative funding program”, or AFP
- AFP’s are typically run by contracted companies (separate from the insurer) who apply for drug manufacturer financial assistance on your behalf
- And they then take that financial assistance and split it between themselves and the insurance company
- You then get your medication at the same cost as you would have with the manufacturer financial assistance, but that assistance now doesn’t count toward your deductible
- Among other negative impacts
- AFP’s are typically run by contracted companies (separate from the insurer) who apply for drug manufacturer financial assistance on your behalf
- These folks do a better job explaining than I, if the above doesn’t make sense
- I don’t need to tell you, dear reader, that fact
- All that is to say is that this practice has been banned in state after state, year after year, and yet it keeps rearing its ugly head in various forms
- The AFP is just the most recent form
- So this bill is the latest one playing whack-a-mole with this practice
- But it’s a pretty comprehensive bill that prohibits the practice by describing it, rather than defining it
- This bill was heard this week in Senate Commerce, which is notoriously friendly to private insurance companies
- There was a lot of testimony, and some good debate, but ultimately, the bill got rolled to the first calendar of the 2026 General Assembly session
- So they’ll pick up where they left off next year
- There was a lot of testimony, and some good debate, but ultimately, the bill got rolled to the first calendar of the 2026 General Assembly session
- I think one thing to highlight here, besides the bill itself, is the use of opaque, complicated and hidden practices to extract money in the healthcare system to profit those who design these systems
- All are not innocent – insurance companies, healthcare providers, pharmacy benefit managers, clinics and drug manufacturers are all playing this dance
- Because they all either have a profit motive, or need to extract to stay in business
- It’s a sign of a broken healthcare system that so much effort is expended on gaming that system through bad faith exploitation of the system, rather than on improving outcomes
- And it’s meant to be hard for you to understand on purpose – you must argue against somebody whose job it is to make these practices seem normal and ok, and is an expert in the field, in order to oppose them
- “You just don’t get it, this is complicated but it’s good for you”
- And don’t think TennCare doesn’t play this game either
- Perhaps it’s because we work in opposition to their practices regularly, but they may be one of the more egregious actors in this dance
- And their motive, established by TennCare III, is to “save money”, which is their own kind of perverse profit motive
- All are not innocent – insurance companies, healthcare providers, pharmacy benefit managers, clinics and drug manufacturers are all playing this dance
- Next up:
- 2026
- Other other stuff
Federal Update
- The hack saw came for the Department of Health and Human Services (HHS) this week
- Just weeks after it came for the Department of Education, and within months of coming for most of the administrative state
- Included in the cuts are the essential dissolution of the Administration for Community Living (ACL), the Office of Civil Rights (OCR) and the Substance Abuse and Mental Health Services Agency (SAMHSA)
- Not only are these agencies and programs being cut (or, in hack saw terms, “reorganized across other departments”), but 20,000 HHS employees are being terminated
- Those employees work at HHS, the Centers for Disease Control (CDC), the Food and Drug Administration (FDA) and the National Institute for Health (NIH)
- Not only are these agencies and programs being cut (or, in hack saw terms, “reorganized across other departments”), but 20,000 HHS employees are being terminated
- This is bad!
- These entities are responsible for a wide array of public health activities, and mostly serve populations that rely on governmental support and protections
- That includes us – impacted will be independent living centers, Area Agencies on Aging and Disability’s and smaller, specific programs meant to benefit people with disabilities
- Think, respite groups, job training organizations, housing coordinators, etc.
- It’s almost impossible to iterate all the things we will lose from these cuts to HHS
- That includes us – impacted will be independent living centers, Area Agencies on Aging and Disability’s and smaller, specific programs meant to benefit people with disabilities
- People across the country rely on these things, and they better our lives, make us more able to live in our communities and more able to thrive in lives of our choosing
- People will suffer this choice
- I mean, they’re cutting Meals on Wheels! How can you justify this?!
- These entities are responsible for a wide array of public health activities, and mostly serve populations that rely on governmental support and protections
- And that’s what it is: a policy choice
- And there have been a lot of policy choices lately that have disproportionately and negatively impacted the disability community
- Whether they mean to or not
- For example, the closure of the Department of Ed! $880 billion in cuts to Medicaid! Cuts to medical research! Revocation of ADA guidance! Lawsuits challenging Section 504!
- And policy choices are the function of the people we’ve elected to represent us
- Do you feel that these actions, federal or state, are representing our interests?
- Will we, as a community, as individuals with disabilities, be better off because we cut meals on wheels and the ACL?
- And there have been a lot of policy choices lately that have disproportionately and negatively impacted the disability community
- To be frank and clear: this is enraging. I am angry. I am scared. I am bitter.
- But I’m not going to lose hope. If there is one thing I know, it’s that the disability community can and has kicked, clawed and dragged ourselves to where we’ve gotten now
- And we’re not just going to roll back down the hill without a fight
- I don’t have a good opportunity to direct that sentiment for you, dear reader, and I’m sorry for that
- But I will, and I hope you’ll join me in righteous anger as we turn back the tide of retrenchment and revanchist backsliding
- We’re not going to go away, and they’re not going to get away with it
- But I’m not going to lose hope. If there is one thing I know, it’s that the disability community can and has kicked, clawed and dragged ourselves to where we’ve gotten now
GRASSROOTS Update
- Rage, my friends.
But next week, I got something for ya
Media Update
- The Atlantic – Media update this week is gonna be good stuff – like, enlightening stuff about how people engage at the human level. This is the start – generosity is a good thing (as I’ve noted here), but it’s extra good when we are willing to accept others’ generosity. So give AND receive, and we’ll all just be a little bit happier.
- NY Times – why do we choose to do hard things? “Effort becomes its own reward”, says David Brooks. Seems like an apropos statement for these times.
- Aeon – let’s wrap up with some philosophy that I consider to be cannon: Martha Nussbaum. This article contrasts her “capabilities approach” with that of Amartya Sen, but I think the important thing is the “capabilities approach” itself. It’s what, in my opinion, policy and governance should strive for.
That’s all I got for you this week, dear reader. Hang in there, stay strong, and we’ll fight today, and the next one.