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2024 TDC Legislative Wrap Up




On April 25th, the Tennessee General Assembly adjourned sine die, concluding the 2nd year of the 113th General Assembly. While the 2023 session was unique in the extent of its public-facing drama and intrigue, the 2024 session was comparably more of a standard session. That’s not to say it was without drama, intrigue or facepalms – in their infinite wisdom, the GA banned both vaccine lettuce and chemicals hidden in contrails – but the focus and conflict this year was more oriented toward policy than player.

But most importantly, we, the disability community, had another pretty darn good year. The same caveat as every year applies this year as well, however: we won a lot of battles, but we lost some too. The spectrum of disability makes it nigh impossible to comprehensively pass all the good bills, stop all the bad bills, and do so without disagreement within the community and in a way that satisfies all stakeholders. Our community is not a monolith, after all. Nonetheless, we were able to pass all 4 TDC bills/resolutions, including modernizing parking placard language in the code, wheelchair repair reform, a resolution calling for a Tennessee paid family caregiving policy, as well as…. Medicaid Buy-In!

And, as is the case every year, our success at the legislature was only possible because of the advocacy of people in our community. We had over 300 advocates in attendance for this year’s Disability Day on the Hill, numerous advocates and organizational friends took meetings and gave testimony, and the entirety of our legislative slate – the ideas that became the bills – came from those in the community who spoke up. This year, it really felt like the all the pieces in the puzzle came together in a really effective way – everybody at Cordell Hull had something to add, and boy did they. As I note every year, the disability community plays an important role in policy-making – what’s good for us is usually good for everybody, and what’s bad for everybody is twice as bad for us. Which means that our work, though cloaked in the very real needs of the disability community, is really a caretaking role for all our Tennessean neighbors. Our legislation makes Tennessee a better place for everybody, and again, that’s because of the advocates who step up and place their puzzle piece. Onward!

 

The Session

This year was the final year of the 2-year 113th Tennessee General Assembly. This means that every bill received some sort of conclusion (pass, fail, whither), and next year we start with a clean slate. And next year’s clean slate might see some new faces! The entirety of the House is up for reelection in November, as is half of the Senate. In all, the 113th saw 3,797 bills proposed, and of those, 201 were passed. The Gov is still making his way through them to sign (or not sign, and just wait for them to automatically become law), but I expect all of those 201 to make it into Public Chapter (and into the code).

The 2024 General Assembly looked a lot like the 2023 General Assembly in composition. Representatives Justin Jones and Justin Pearson, expelled from the legislature near the end of the 2023 session, both won back their seats in special elections. Rep. Timothy Hill returned to the General Assembly in a special election to fill the resigned Rep. Scotty Campbell’s seat, and Rep. Aftyn Behn won her special election to replace Rep. Bill Beck, who passed away last year. Leadership in both parties and chambers remained the same, with Speakers Cameron Sexton (House) and Randy McNally (Senate) presiding over their respective fiefdoms.

Notably different from recent years, the General Assembly did not have a big ol’ budget surplus to play with this year. After at least 4 years of multi-billion dollar revenue surpluses, the state faces a revenue shortfall this year. This, in part, stems from business tax cuts passed in 2023, lower tax revenue from spending and tourism, as well as some big recurring spending in recent years (cough stadiums and retention cough). So far, the Sycamore Institute finds that the state is short $427 million, and projects a total $885 million shortfall at the end of the fiscal year. That mostly means that the scope of legislation would be lesser, fewer things would be funded (and thus, be passed by the General Assembly) and that the state may have to turn its eyes towards things it has already budgeted for cuts in the near future.

Despite the gloomy budget projections and predicted minimalism of the legislative palette, Governor Lee did not shy away from proposing some big legislation this year in his state of the state address. However, the General Assembly did not seem to be as cooperative with his agenda this year, as compared to recent years. That could be in part because of the budget circumstances, it could be that there were true policy differences, but it could also be that Governor Lee, now in his second session, could be considered a “lame duck”, diminishing his leverage over the legislature. Regardless, here are how his 2024 priorities played out:

  • Private School Vouchers: In November, 2023, Governor Lee announced his intention to pursue legislation to expand the state’s private school voucher program. After much drama and court-battling, the original and current program offered funds for some students, based on their family income, in just Davidson and Shelby (and eventually Hamilton) Counties to attend private schools. The Gov’s original proposal would expand the program statewide in year 1, and eliminate income-based eligibility in year 2 and beyond

 

However, the General Assembly had ideas of its own – both the House and Senate came up with competing versions of the voucher expansion, and all three iterations were pretty drastically different from each other. Beyond the bare bones of expansion, the Senate added some private school accountability measures and a statewide public school open enrollment policy. The House version, which requires a lot more votes to pass, added a bunch of public school goodies (new teacher health plan, reduced testing, infrastructure spending) to entice hold outs.

Ultimately, the legislation never found much footing – each version passed through the respective education committees with much debate, but little problem in the end. But, the House and Senate never really moved their bills closer to each other, failed to even attempt to compromise until the very end and seemed to want to punt the decision to somebody else. In the end, each version of the bill was left to whither in its respective finance committees, never receiving a floor debate or vote, and the Governor’s proposal was never taken very seriously at Cordell Hull.

So the state of Tennessee does not have a universal private school voucher program at the end of the 113th. However, I don’t believe we’ve seen the end of the voucher debate – not even close. I expect proponents to do their due diligence this fall, recruit some additional champions, find some new sponsors, inject a whole bunch of money, attempt a compromise, and try again next year.

  • Franchise and Excise Tax Cuts: Fearing potential litigation from aggrieved businesses, the Governor proposed to substantially change the way businesses are taxed in Tennessee.

  • The bill, which passed, cuts about $400 million from yearly revenue from here to eternity, and offers about $700 million in tax refunds to state businesses

  • This stems from a Maryland law that was found to violate the Constitution’s Commerce Clause, which prohibits states from levying unfair taxes on interstate business

  • In the end, this is a tax cut for businesses with some additionaly sunny day refunds headed their way.

  • The impact it has on the disability community is the cut to state revenue, and thus, spending

  • Tennesseans with disabilities rely more heavily on the state to provide adequate, quality supports and services in order to live in the community

  • With fewer dollars coming in, there are fewer dollars to spend on establishing or improving those programs

  • From our perspective, I think this should be looked at as a values and priorities decision

 

  • Department of Disability and Aging: the Governor also proposed elevating the Tennessee Commission on Aging and Disability (TCAD) to a department level, and combining it with the Department of Intellectual and Developmental Disabilities (DIDD), to form the new Department of Disability and Aging

  • 2023 Tennessee Disability Scorecard Homework

  • This priority passed the General Assembly!

  • We really like this one! It provides more resources and attention for folks in the aging community, and supports the IDD community be streamlining and maximizing overlapping services

  • Ultimately, it means more purposeful attention and resources for both the disability and aging communities

  • Implementation will be the challenge, of course, but the disability and aging communities will certainly be watching

 

  • 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

  • 2023 Tennessee Disability Scorecard Homework

  • This was the big one, and on the second to last day of the session, it passed!

  • In fact, passed with flying colors – take a look at this link for a little taste of what that day at the Capitol was like

  • But here’s why it’s the big one:

  • With the bill’s passage, we became the 47th state to have such a program, so catching up to the Jones’ is worth noting

  • The bill obligates about $9.7 million per year on a recurring basis to fund the program – that’s the biggest new recurring line item in this year’s final budget

  • And, as we’ve said before, the budget is a values document, and the funding for the program demonstrates just how popular the idea was at Cordell Hull

  • It passed unanimously! At every stop! With every Senate member co-sponsoring, along with 79 House members

  • Don’t tell anybody, but it’s one of the most accessible programs in the country

  • Other states have slightly higher but equally strict income/asset limits, age limits, disability type limits, etc.

  • Ours has no limit to who can participate, save the requirement to have a disability, have a job and pay your premium

  • And, most importantly, it’s going to help a whole bunch of Tennesseans with disabilities

  • For many members of our community, the future just got a whole lot more expansive, with more options for employment and an opportunity to build a future of their choosing

  • The law will take some time to implement – TennCare will have to ask CMS for approval, and then I’m sure they’ll take their sweet time setting in up the infrastructure

  • And, as Carol says, the devil will be in the details

  • We’ve seen big wins and great programs get muddied up by their implementation

  • Katie Beckett is one, but the burdensome nature of accessing the benefits of Tennessee’s Medicaid programs extends pretty universally

  • And it’s sort of TennCare’s MO – the harder you make it to attain supports and services, the fewer people will access those services, and the less money you will have to spend

  • But, just as our rowdy GRASSROOTS advocates have shown thus far, TennCare will be watched, prodded, bothered, urged, bothered some more and held to account for implementing the program and operating it competently[MOU1] 

  • And, to that note, the only thing that gives me pause about the passage of this bill is the perceived validation of the TennCare III shared savings concept

  • Quick reminder: TennCare III has a clause that says if TennCare has leftover money at the end of the year (aka they didn’t spend it on their current population), they could split the savings with the feds

  • The only catch on those funds is that they have to be spent on new services or reaching new populations

  • Of which the buy-in crowd is a part of the latter

  • But, the concept incentivizes TennCare to remain stingy in meeting the needs of those with the highest level of need

  • And redirects those dollars to other populations

  • For example, those in ECF Groups 7 and 8, which serve Tennesseans with disabilities who manifest behavioral needs, receive almost nothing from the state

  • But instead of fixing the threadbare/nonexistent network of providers, TennCare instead can pat itself on the back by rolling out a shiny new program

  • Like this one, or diapers for mothers in poverty, or 12 month maternal health coverage, or dental coverage, etc.

  • The previous is not meant to diminish the buy-in program in any way – it’s a huge win, a good program and will help people who need and deserve it

  • I just don’t like that it had to be paid for with shared savings

  • And now for some thank you’s:

  • Thank you to Robby Barbieri, who brought the idea for the bill to Representative Jernigan, testified multiple times in committee and spoke to a dozen-plus legislators about the bill

  • This bill doesn’t exist without you

  • (and, if you haven’t heard Robby’s story, it’s definitely worth 4 minutes of your time – you can watch at this link)

  • Thank you to Bliss Welch, who secured our Senate sponsor in the mighty finance chair Bo Watson, and peppered the media landscape with good vibes and good reason for others to jump on board

  • Thank you to the OG sponsor and brains behind the technical details and the GA strategy, Rep Darren Jernigan – you steered the ship from behind, got us our funding and won us the majority of our legislative support

  • Thank you to our prime sponsors, Senator Bo Watson and Representative Tim Hicks, who deftly ferried our bill through multiple committees, the budget process and ultimately, the floor

  • Thank you to all 110 co-sponsors, who showed us just how powerful good legislation can be

  • Thank you to Rep Gary Hicks and Speaker Cameron Sexton, who went to the mat for the funding in the final House budget

  • Thank you to our good friends and TDC alums, Courtney Atnip and Melanie Bull (and non-alum Nick Crawford) at Capitol and 5th for opening doors, winning hearts and continuing to be the good guys at Cordell Hull

  • Thank you to all the advocates, who sent 357 messages to legislators and the Gov, shared our media on the bill, talked to friends and family, and generally provided the muscle to move the bill

  • Thank you to the TDC team, who put us in front of the media, produced our videos, planned DDH, advised the policy plan and proved that the TDC playbook can do huge things

  • I’m very proud of this bill, and proud of the people who worked on it – I can’t wait to see it in action

 

  • 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

  • 2023 Tennessee Disability Scorecard Homework

  • This one also passed!

  • Now, a resolution does not create a paid family caregiving policy and program, but it does signal to TennCare that the General Assembly would be supportive of it

  • Will TennCare take that message and establish a program? Unlikely

  • But passage sets the foundation for you-have-to-do-it legislation next year

  • On which we will work over the summer and fall

  • The details going forward are all up in the air and up for debate – agency-based vs standalone program, wage vs stipend, eligibility criteria, etc. – and we will certainly be asking

  • But this was a very good start, an opportunity to begin the discussion, a chance to educate our lawmakers and a proof of intent by the General Assembly

 

  • 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.

  • The much anticipated sequel to part 1 also passed!

  • This one not without some difficulty and luck

  • First things first, however – this bill, along with its prequel, should make getting a wheelchair repaired in Tennessee much easier, much more cost effective and much less frustrating

  • Reminder: part 1 eliminated prior authorization requirements for getting a wheelchair fixed, ending a burdensome and purposeless step in the wheelchair repair process that took too long

  • This bill established two new ways to get a wheelchair fixed:

  • 1 preventative maintenance visit per year from the company that sold you your wheelchair

  • The intention is that you call them up, they come out with their toolbox, tighten bolts, kick the tires and fix any obvious items in need of repair

  • Using an independent repair person to do some simpler, non-clinical repairs without affecting one’s wheelchair warranty (and coverage)

  • This would be for things like flat tires, torn coverings, bearing replacements, parts replacement, etc.

  • This should speed up simple fixes, but also incentivize suppliers/manufacturers to speed up their own internal processes

  • But, as I noted, this one was more difficult than part 1, and required some concessions

  • First, the bill only applies to TennCare

  • Initially, it also included private pay insurance companies, but we ran into some roadblocks

  • The first being the insurance companies’ stranglehold on Senate Commerce – nothing goes without their thumbs up

  • The second being the ACA – we accidentally established a new “essential health benefit”, which requires the state to kick some money toward private payer coffers

  • So we had to narrow the scope, so as not to put the entire bill in jeopardy, especially in tough budget times

  • Second, we had to go from 2 preventative maintenance visits per year to 1

  • It’s just playing nice

  • And for the luck? We were set to lose in Senate Commerce (because of the stranglehold), but an argument between TennCare and Big Pharma over financial support programs for expensive meds took too long

  • And, just generally, that TennCare sort of sat this one out after some early consternation

  • BUT, we should have the country’s most comprehensive and beneficial wheelchair repair policy

  • When, of course, this is all implemented

 

  • 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

  • Another passed bill, this one much quicker and easier than the others

  • The idea for the bill came to us via an advocate who found the language used on the application for a disability parking placard to be outdated and, frankly, offensive

  • It used terms like “spastic” and “arthritic” and “permanently confined to a wheelchair”

  • The source of that language was the language used in the code, so we decided to modernize it

  • And only Senator Bowling seemed to have a problem with it

 

Other stuff we liked this year:

  • HB2297/SB2864 – Slots for KB Part B – this bill would require DIDD to add an additional 1,000 Katie Beckett Part B slots to serve eligible children with disabilities

  • Katie Beckett Part B has a waiting list now, in part, because of its enrollment/funding cap

  • So this bill would have provided funding to raise that cap, originally by 5,000 spaces, and then amended to 1,000

  • Alas, given the budget situation, it was not meant to be – the bill did not receive funding, and thus, did not get a floor vote

  • But the process was not without benefit – lovely sponsors Rep Sam Whitson and Sen Kerry Roberts were able to use the platform to iterate some of the issues facing families in the Katie Beckett program

  • Including the inflexibility of Part A

  • Stay tuned, I have a strong suspicion we might see this one again next year (or something like it)

  • HB2445/SB2419 – Emma’s Bill – this bill would require TennCare to consider a patient’s overall condition when determining medical necessity and funding of items, services, therapies and care

  • This bill stemmed from the experience of a young adult, who contracted a sudden and acutely disabling illness

  • The illness required the use of a ventilator, which, in this case, was meant to be short term and used appropriate to the condition of the patient, Emma

  • And, fortunately, Emma began to recover to the point that doctors wanted to wean her off of the ventilator

  • However, with the expected change in practice, TennCare cut funding and services to Emma

  • Which meant that they could not afford the 24/7 nursing care that Emma needed

  • Which is standard TennCare practice, which requires that TennCare only pay for the least costly plan of care

  • The bill asked TennCare to look at Emma’s overall state when determining the level of supports and services they need and the amount of funds necessary to pay for the best plan of care, regardless of cost

  • Unfortunately, that costs money

  • And TennCare HATES spending money

  • Ultimately, the bill did not get funded, and thus, did not see its turn on the floor

  • I hope we get to see this one again next year

 

  • HB2623/SB2496 – this bill would repeal a 2018 preemption law forbidding local governments from offering voluntary participation in local programs that offered zoning incentives to developers in exchange for including affordable housing units in new housing developments

  • 2023 Tennessee Disability Scorecard Homework

  • And it passed!

  • This means that, say, Knoxville could tell developers that if they make a certain percentage of their apartments in a new complex “affordable”, they could have zoning exemptions

  • These exemptions could be for things like building height, setback length, number of parking spaces, etc.

  • This is good! We need more housing, and this certainly qualifies as one of those “if it’s good for everybody, it’s doubly good for Tennesseans with disabilities”

  • Tennesseans with disabilities require 51% more income to achieve the same standard of living as somebody without a disability

  • Which makes all but 5 counties in the state unaffordable for people with disabilities

  • This also opens the door for incentivizing accessible housing, as well as supportive housing and other community living options for Tennesseans across the disability spectrum

  • However, it’ll be up to local municipalities to enact such a policy

  • So the next step in actualizing this policy is to educate local council members and asking them to prioritize housing for their residents with disabilities

  • HB2261/SB2117 – Alternative Licensure – this bill establishes tiers of licensure for “homes for the aged”

  • 2023 Tennessee Disability Scorecard Homework

  • Senator Massey has been working on this issue for a number of years, being foiled by Big Fire Sprinkler and TCAD in the process

  • However, this one passed!

  • This effort stems from a report published by TCAD which took aim at unlicensed facilities in TN

  • Which, to be sure, have no oversight, and are thus much more susceptible to abuse and neglect of aging adults

  • That said, the former licensure process made it extremely difficult for small facilities – 3 of fewer aging adults – to obtain and keep a license

  • The bill should make it easier to license smaller, community-based housing options for aging Tennesseans

  • While providing adequate requirements and oversight for safety and quality

  • This is a big need, and a great start – again, it’ll be the implementation and proliferation of the new policy

  • HB2293/SB2118 – Print Disability Absentee Voting Act – this bill would allow Tennesseans with a print disability to apply for, receive and return an absentee ballot electronically

  • This one passed too! Senator Massey on a huge roll!

  • Greater access for more people with disabilities to cast their ballot is absolutely a good thing

  • And this does just that

  • TN routinely ranks at the bottom of voter turnout rankings, for those without disabilities, but especially for those with disabilities

  • And we should be voting when we can! The more Senator Massey’s we have in the GA, the more bills like this one we get

  • OREA Report on Informal Exclusionary Discipline Practices/Legislative Panel

  • This is not a bill, but it is a good thing that happened in state government this year

  • Representative Mark White, who chairs the important and influential Education Administration Committee, agreed to support our effort to improve the education of TN students with behavior needs

  • First, on our behalf, he requested that the Office of Research and Educational Accountability (OREA), an independent research wing of the state Comptroller’s office, study “Informal Exclusionary Discipline Practices”

  • I define those here

  • But this effort is based on an effort in Oregon, where Disability Rights Oregon solicited (via lawsuit) an neutral expert report on informal removal

  • (which was scathing)

  • From there, they were able to enact legislation prohibiting some of these practices

  • We’ve been told to expect a report from OREA by next January

  • Second, Rep White hosted a legislative panel that educated lawmakers about the existence and success of existing community-based behavioral health interventions in the state

  • You can watch that here

  • The purpose was to begin the conversation about better ways to address the behavior needs of Tennessee children

  • These efforts are part of a larger project to help Tennessee better meet the needs of students with behavior needs in schools

  • Stay tuned for ways to be involved in this project!

 

 

Stuff we didn’t like so much:

  • HB1202/SB1325 – Gun Carry in Schools – this bill would allow some school staff to carry guns in schools

  • As was the case during the 2023 session, guns were a primary source of conflict in the halls of Cordell Hull and the chambers of the Capitol

  • This one allows non-School Resource Officers (SRO’s) to carry guns in schools if they meet certain qualifications

  • Such as: be trained for 40 hours in SRO training, have a permit, sign an agreement with the district, etc.

  • The bill was problematic for a number of reasons

  • First, I don’t think it would do much to achieve its ostensible goal: safety for children in schools from active shooters

  • Trained, armed police officers have failed in some pretty high profile ways to do just that, I have a hard time believing a teacher would fare better

  • Second, implementation could be harmful to kids with disabilities, particularly those that manifest behavior needs

  • Those kids are already misunderstood, and the reactions and policies of schools currently are often inappropriate, disproportionate and harmful

  • And that’s a bad recipe plus one gun

  • Third, it is simply dangerous, for all students

  • Whether it be accident, conflict or negligence, guns are dangerous around children

  • However, the bill passed

  • But not without drama:

  • Speaker Cameron Sexton cleared the galleries of protesters, on more than one occasion

  • Students from Nashville high schools staged protests and walk outs in opposition to the bill

  • Thus far, numerous districts have come out and stated that they will not enter into agreements with school staff to carry a concealed weapon

  • And I have not seen any affirmatively state that they will

  • One thing is certain, however: it won’t be the end of the gun debate in the General Assembly

  •  HB1640/SB1769 – Jillian’s Law – this bill would allow for the involuntary commitment of people with IDD if found incompetent to stand trial for certain crimes

  • This one was tough, for a number of reasons

  • The impetus to this bill is obviously a tragedy, and a preventable one at that

  • However, the bill presents the underlying assumption that people with mental health needs AND those with IDD are inherently dangerous

  • In fact, it sets that legal precedent: under this law, one must prove that they are not dangerous in order to avoid involuntary commitment

  • The bill applies extremely broadly, to all felonies and misdemeanor A’s, not just violent crimes

  • Misdemeanor A’s include things like running away from the police, possession of drug paraphernalia and theft under $1,000

  • The solution, involuntary commitment, is not feasible without substantial investment, to which the fiscal note’s appropriation is wholly inadequate to provide

  • For folks with IDD, the only place for involuntary commitment is Harold Jordan, which currently has only 4 available, staffed beds

  • Between those with MH needs and IDD, a recurring appropriation of $2.1M isn’t going to fix that

  • Ultimately, this intends to get at what is truly a broken system, but does so in a punitive, broad and un-enactable way

  • The bill passed, and has since been signed by the Governor

  • HB2922/SB2820 – Charter Boarding Schools for “At-Risk” Youth – this bill would permit the establishment of charter boarding schools and defines several categories of “at-risk” youth

  • After being thwarted by some scary advocates last year, Speaker Sexton brought back a modified version of his Charter Boarding School bill

  • Last year it explicitly included children with disabilities as a category of “at-risk” student

  • This year, that category is removed

  • But there are numerous categories, such as school absence, grade retention and experiences of abuse and neglect (see below) that would wrap up kids with disabilities regardless

  • The GA passed another bill this year (which we didn’t like) that redefined “abuse and neglect” in the eligibility standards for state custody to include “unmet mental health need”

  • Which is a service we know that is almost entirely unavailable in the waiver programs

  • And for students with disabilities, being sent away to a residential school, with no promise of increased levels of services or support, and likely without meaningful parental involvement (as required by IDEA), this amounts to being swept under the rug, out of sight out of mind

  • This one unfortunately passed as well – we’ll see which Charter companies are the first takers for residential schools

  • And, of course, have to watch them to ensure the rights of children with disabilities are protected

  • HB2497/SB2146 – IDD Residential Licensure Exemptions – 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 was a really difficult one for the community because it illuminated a big and messy divide about residential options for Tennesseans with disabilities

  • First, though, I want to talk through our stance on the issues:

  • We (TDC) fundamentally believe in inclusion – in schools, in our workplaces and organizations, in our communities and in society as a whole

  • Thus, we believe that there need to be strong protections against segregation, in all the above contexts

  • We also believe that people with disabilities have the right to make choices about their own lives for themselves

  • And we believe that the state should provide person-centered, high-quality and easily-accessible supports and services to support that inclusion and choice

  • And, to that last point, is the source of conflict within the community – the state does not provide that, while claiming that they do

  • Which leaves many to whither on the vine while being gaslighted by the state about absent supports and services

  • And forces awful, unfair decision-making on those people with disabilities and their families

  • But I, and TDC, contend that the solution to a broken Medicaid waiver system is not to diminish the protection of inclusion and choice for people with disabilities by offering carve-outs

  • I hate the slippery slope, but I’m willing to go on record saying that we’ll see requests for similar carveouts again next year

  • And the more carveouts granted, the more likely it is we see bad actors come in and take advantage of people

  • Especially those who have been repeatedly and comprehensively failed by the state

  • Further, the more we let TennCare and DIDD off the hook for not providing services, allowing them to outsource their problems, the less likely it is that we are ever able to make the waiver programs work for everybody else

  • But I know, after heated debate in and out Cordell Hull, that not everybody believes this in the same way

  • Which I can understand – ECF has been broken from the design stage, and efforts to fix and reform it have been stonewalled at almost every turn

  • And if the two options you face are the failed ECF program or nothing, you might be willing to make compromises to get something

  • And this is a real problem, that some face more acutely than others

  • And I’ll say, we in the community should be rushing to their side to demand that the waivers are sufficient for everybody

  • But all that is to say, I think passage of this bill, in the short and long term, is bad for people with disabilities and their families

  • It opens the faucet that works to eventually erode support for inclusion and choice and state-sponsored support for people with disabilities

  • Which erodes access to services, quality of those services and extent of those services for all Tennesseans with disabilities

  • It opens the door for bad actors to follow in behind

  • As we’ve seen the for-profit and private equity space come into our communities, we’ve seen closed hospitals, low-quality service and predatory practices

  • It perpetuates the far-too-present stereotype of people with disabilities as cherubic porcelain forever-children with no agency, preferences or capacity for choice

  • And that erodes support for inclusion, choice and freedom for people with disabilities

  • It is not a solution, and I don’t think it leads us down the path to a solution

  • The bill passed, and was funded, so we’ll see the impact slowly over the next decade

  • But in the meantime, we’ve got some wounds to heal, some divides to bridge and some difficult conversation to be had in our community

  • And it’s worth it – when we fight amongst ourselves, we let those who are truly responsible, TennCare, DIDD and the state, off the hook far too easily

  • But when we can come together over the commonalities in our goals, we can do amazing things.

 

And with that, dear reader, I must leave you. In all, the 2024 General Assembly session was good for our community. I am proud of the work of TDC, of our member and partner organizations, of our advocates and self-advocates, our sponsors and legislative champions, and in its totality, the community. We have once again proven that our disability community is strong, it can be powerful, and it can make good things happen, not just for ourselves, but for every Tennessean across the state.

But there is no resting on any of these laurels – our eyes already need to turn toward next January to prepare to make the 2025 General Assembly session even better. There will be a multitude of ways to plug in on those efforts, starting this summer. We want to work on ECF, we want to work on Katie Beckett, on Special Education, on paying family caregivers and on improving assessment and access to waiver services. And we’re always wide open to hearing from anybody and everybody about where they think our work should take us – my email is always open.

I hope you all take a look at what advocates and community members have done this year – everything from and in between conception to passage of legislation – and see yourself in that work. It truly is a beautiful picture when every piece of the advocacy puzzle sets into place. But please take a moment to celebrate another good year, reflect upon and learn from some of our mistakes, and when the mood so strikes, think about how your puzzle piece fits into the big advocacy picture.

Stay tuned to TDC for more updates and opportunities to engage with our policy work – until then, happy adjournment!

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