TDC family, I am raging mad, hot under the collar and ready for a fight (and whatever other metaphors refer to white hot fury). And that’s because we indeed have a real fight on our hands, one I thought we had put to rest decades ago. This isn’t going to look like any of my regular weekly policy updates (don’t worry, I have them, but I want this humble register to convey the urgency of this issue), and I apologize if I miss some things, but we need to pull out all the stops on this one. Gear up, TDC family, the fight is here and it’s knocking on the door.
Week of March 25th Policy Priority #1:
- HB2497/SB2146 – this bill would establish a carve-out to the licensure requirements for residential facilities that serve individuals with intellectual and developmental disabilities, permitting the construction and operation of large scale, segregated and congregate facilities by two companies in the state
- This is the fight – segregation vs integration, exclusion vs inclusion, dependence vs self-determination, moving forward vs going backward
- Quick reminder, current law requires that no more than 4 people with disabilities reside in a single residence, and that that residence can’t be less than 500 yards from another residence for people with disabilities
- Sort of simple and crude, but it prevents the establishment of institutionalizations
- And these laws were put in place upon the closure of our state’s institutions to protect our community from EVER being subjected to them again
- And it signaled a new era of community inclusion and integration
- See my video last week on the bill at this link
- Quick reminder, current law requires that no more than 4 people with disabilities reside in a single residence, and that that residence can’t be less than 500 yards from another residence for people with disabilities
- Despite the objections of the vast majority of the disability community, this bill passed House Health Sub last week
- I really encourage you to watch the committee hearing – it’s important that you know what you’re up against
- Bill introduction and testimony
- Rolling of the bill
- Continuation of the bill – committee comments
- Plus, watching it may very well may light your fire
- On Tuesday (day 1), Brightstone testified on behalf of their bill, and our courageous advocates, Robbie Faulkner of the Arc and Jolene Sharp, parent and DD Council comms expert, testified on the “no” side
- I’ll get to my arguments with their narrative shortly
- Chairman Hawk ultimately dithered long enough to delay the vote until the committee ran out of time, providing another day of conversation separate from testimony
- This was purposeful (and helpful), because the bill needed and deserved more time
- Legislators had the chance to speak the following day (day 2)
- Rep. Hurt was unavailable to present the bill, so Rep. Tim Hicks (noooo, he’s got our Pathways to TennCare bill) stood in his stead
- Rep. Jernigan hit him hard with legal (and ethical) questions
- Rep. Williams had some good questions about the need for the carveout in the first place
- Rep. Mitchell had some good questions about oversight
- Chairman Hawk, frustratingly, had some opinions in defense of the bill and concept
- I really encourage you to watch the committee hearing – it’s important that you know what you’re up against
- So here are my rebuttals to Brightstone’s narrative:
- Brightstone: residential options are lacking in Tennessee for people with disabilities, this addresses that need
- Well, I actually agree that residential options are lacking, and on a purely abstract basis, this housing is indeed more housing
- But this is not the only option, as they suggest, and there are current and available options that we don’t object to
- It’s not Brightstone or the streets, as they imply
- Brightstone: this is a pilot program to test out a new, novel idea
- C’mon, this is an old idea, we did segregated, congregate facilities for DECADES (and called them institutions)
- We closed those because we came to find that the nature of their design and structure was actually bad (like, real bad) for people with disabilities
- Brightstone: this is about choice, and allowing for parents to choose what is best
- Hey, these aren’t kids, these are adults with disabilities
- Disability does not mean that someone can’t have preferences, goals, dreams and agency
- What about the choice of the person destined to live there? Are they getting a choice about determining the path of their own lives? Why are we privileging somebody else’s choice about their lives?
- Brightstone: residents will have meaningful access to the community, downtown Franklin is 2 miles away!
- Well, it doesn’t say that in your bill. You may whisper those sweet nothings to legislators to dress it up, but your bill does not require you to do that
- I mean, here is the master plan, it looks like a comprehensive, all-inclusive campus is the goal here.
- Looks like a company town to me: work at the pottery shed so they can sell your wares, you get Brightstone bucks that you can spend at the company store, and you can consume company-approved media on the tv chained to the radiator
- Brightstone: we’ll report on the success of our pilot program
- By what measure? How will you determine “success”? Will you allow residents to speak?
- Brightstone: residential options are lacking in Tennessee for people with disabilities, this addresses that need
- Here are my arguments:
- We must consider the choice of people with disabilities
- There is human dignity in self-determination and self-agency, and this strips these folks of a lifetime of that
- The proposal offers such a narrow menu of choices that present a false, and far less rich world for people to live in
- I’m pretty sure the Jim Carey character didn’t like being in the Truman Show by the end of that movie
- This erodes an important protection for people with disabilities form the possibility of institutionalization
- This firewall has kept institutions at bay for decades, any exemption opens the door to more exemptions
- This is a legit argument: if those rich people have this option, why can’t poor people? In almost all cases, I’d agree with that argument!
- And that, friends, is TennCare establishing a state-run institution
- This is segregation
- Out of sight, out of mind – we don’t have to deal with the complexities of a human being if they are locked up on a college campus of perpetual summer camp
- This is a red-line, founding principle of TDC – community inclusion and integration
- I don’t see this as a principled stand from Brightstone (otherwise, they’d allow everybody else to have this “carveout”), they just want something for themselves
- You’re asking for $1 million per year for oversight of your license
- This money could be spent on community-based options!
- And it’s a waste of money in our current tight-budget times
- This is questionably legal
- This borders on the line of violating the ADA and the Olmstead decision
- The narrow carve-out, in which only two companies could possibly meet the criteria, may violate state law
- And some questions:
- What if somebody wants to leave? Their parents pay $80k/year for their bed, will you let them walk out?
- Are people able to go into the community whenever they want?
- How will you ensure people have some degree of privacy in shared bedrooms?
- Will people have the opportunity to choose and cook their own meals if they want?
- What if they don’t want to work in your store, will you make them? And what if they want to work in the community, will you let them?
- We must consider the choice of people with disabilities
- I’ll say this to wrap it up: this bill cannot pass
- I would never begrudge a parent making what they believe is the best choice for their child
- Community-based residential options are absolutely lacking and sometimes of poor quality
- But Brightstone doesn’t need a carveout to address the problem, particularly with this old, tired and harmful solution
- They’ve got 130 acres to use to build facilities that meet the letter of the law
- But this insertion of “choice” erodes a vital protection, and opens the door for choice to be taken away from both parents and people with disabilities down the road
- I would never begrudge a parent making what they believe is the best choice for their child
- Here’s what we need from our GRASSROOTS
- Reach out to the legislators on the House Health Committee and educate them – this one is MOST important
- It’s been a long time since this fight has come to the General Assembly, and so many of these folks have forgotten the horrors of disability segregation
- And why we went away from it
- Tell your story – explain why choice for people with disabilities is so important, explain why this crosses a line, ask them to protect us
- Here’s a list of their emails – this one has to be personal, so I’ll leave the text to you
- You can straight copy/paste the whole email list into the “to:” box
- But I’d pick your own subject line – we don’t want this to look like a mass-email campaign
- But HB2497 Disability Concerns would work
- If you don’t have time (and this one is less effective and less directed), here’s the Voter Voice from last week
- Here’s a list of their emails – this one has to be personal, so I’ll leave the text to you
- If you’re an organization in the disability world, consider signing on to this letter of concern from the Arc
- It’s important to demonstrate that the vast majority of us in the disability community oppose this idea, and that these folks are the squeaky wheel minority
- Who are coming out of the woodwork to demand that they get $1 million to get around the law (the one we want to keep in place)
- It’s important to demonstrate that the vast majority of us in the disability community oppose this idea, and that these folks are the squeaky wheel minority
- Consider taking a little video or photo of yourself explaining your concerns with this HB249
- You could include that in your email, or post it to socials, or get it to whomever needs to hear it
- Talk about it – the discourse is out of touch with the lessons we learned not a decade ago
- Social media, neighbors, coworkers, etc. – we need to remind the world that we already had this fight and made a choice
- And why we all made that choice
- Social media, neighbors, coworkers, etc. – we need to remind the world that we already had this fight and made a choice
- Show up at Cordell Hull next week
- Demonstrate our numbers and make them have pass a bill against our wishes to our faces
- Reach out to the legislators on the House Health Committee and educate them – this one is MOST important
- Thank you, TDC family, I know you’ll come through for us
- Next up:
- This is the fight – segregation vs integration, exclusion vs inclusion, dependence vs self-determination, moving forward vs going backward
- TennCare for Working Adults – this bill would create an option for working adults with disabilities to pay a premium to access TennCare services (like HCBS), while having income and assets above the current Medicaid eligibility threshold
- This guy was supposed to be heard in the marathon, gonna-clear-the-calendar-and-close-committee hearing in Senate Health last week
- But they ran out of steam, hit the mythical “50 bills” threshold and recessed
- And apparently that made them all very sleepy, because they are not meeting this coming week
- But they ran out of steam, hit the mythical “50 bills” threshold and recessed
- It was also deferred in House Finance Sub, for reasons unknown
- But NBD, it was always going to go behind the budget
- So, the bill still costs too much money, but starting this coming week, our plan to address that commences
- We’ll speak with sponsor and known budget genius Senator Bo Watson this week and explain the issues
- And, believe it or not, Speaker Cameron Sexton wants to help us with the fiscal note
- After we’re placed behind the budget
- Next up:
- This guy was supposed to be heard in the marathon, gonna-clear-the-calendar-and-close-committee hearing in Senate Health last week
- Paid Family Caregiving Resolution – this resolution would urge the state (and TennCare) to work with community stakeholders in developing a comprehensive statewide paid family caregiving policy and program
- Twas a big list, and our Brighstone opposition took up a lot of it, but they didn’t get to it in House Health Sub last week
- So they’ll try again next week
- I hear, though, that the remaining calendar is too big to feasibly complete next time up
- So they’ll either meet twice next week again, or just go ahead and go another week
- So they’ll try again next week
- Next up:
- Twas a big list, and our Brighstone opposition took up a lot of it, but they didn’t get to it in House Health Sub last week
- Right to Repair pt. 2 – this bill would require suppliers of power and manual wheelchairs to offer annual preventative maintenance, and creates a pathway for independent repair persons to do some types of simple, non-clinical repairs.
- This one has been submitted, returned, ripped up, rewritten, submitted, negotiated, amended, renegotiated, amended, dead in the water, saved by Big PHRMA/TennCare, and now….
- Amended again, this time, unfortunately, pretty substantially
- We had to exclude the private payers (any insurance that is not TennCare)
- Apparently, our proposal established a new “Essential Health Benefit” (EHB) for marketplace plans that triggered a $300k fiscal note
- EHB’s are part of the ACA, and the law requires that those costs be defrayed by the state
- Honestly, I don’t really get it, but we’re too late in the game to effectively fight that
- EHB’s are part of the ACA, and the law requires that those costs be defrayed by the state
- Amended again, this time, unfortunately, pretty substantially
- So private payers are out, and while its disappointing and I really wanted to stick it to them, we still get a lot with this bill
- The majority of wheelchair users receive TennCare benefits, which means that in the absence of the totality of wheelchair users, this applies to the biggest chunk
- As Carol says, this is the camel’s nose under the tent – we created something entirely new, which allows us to work on and tweak later
- We get to keep all 3 avenues for repair – independent repair, preventative maintenance and “authorized repair”
- Next up:
- This one has been submitted, returned, ripped up, rewritten, submitted, negotiated, amended, renegotiated, amended, dead in the water, saved by Big PHRMA/TennCare, and now….
- TCA Placard Cleanup – this bill would update language related to disability placards found in the Tennessee Code that refers to people who use wheelchairs as “confined to a wheelchair”; this bill would modernize that language
Other stuff (very brief this week)
- HB1183/SB503 – The Voucher Bill – this bill would create a statewide private school voucher program
- Just popping in to say that this one continues to be a trainwreck. A couple paths this one takes here:
- Senate Ed closes, Senate passes its budget and there is no way forward for the House to pass their version of the bill
- Both the House and Senate pass their versions and they can’t come to an agreement in conference committee
- Both the House and Senate pass their versions, they come to an agreement in conference committee, but the compromise legislation now doesn’t have the votes
- The Gov inserts himself and alienates both the House and Senate
- It passes (but this is increasingly becoming less likely)
- Next up:
- House Finance, Ways and Means Subcommittee – TBD
- Senate – TBD
- Just popping in to say that this one continues to be a trainwreck. A couple paths this one takes here:
- HB2759/SB2809 – School Phone Ban – this bill would require LEA’s to develop a cell phone policy that prohibits their presence in most circumstances during the school day
- This one failed in House Ed Admin last week!
- Sort of surprisingly – there was a lot of debate on this, but I think it came down to the state establishing local policy, and their (occasional) aversion to that
- Next up:
- Next year?
- This one failed in House Ed Admin last week!
- Other other stuff:
- House Subcommittee Calendar
- House Committee Calendar
- Senate Committee Calendar
- No updates yet
- TDC Bill Calendar Report
Federal Update
- Not this week (they’re not doing anything good anyway)
GRASSROOTS Update
- You’ve got your marching orders, GRASSROOTS; this week is all HB2497
Media Highlights
- Sorry, all HB2497, all update
So, if I haven’t made it clear so far, we need all hands on deck to address HB2497. This bill crosses a red line over which we can’t go back. So please, I’m sincerely begging here, I ask you to go all GRASSROOTS for me and do whatever is within your capacity and power to help us put this baby to bed. It’s always been the disability community that stepped up to make the world a better place, and I’m calling on you now to protect the better world that we’ve built. Please reach out if I can support you in your GRASSROOTS.