TDC's 2025 Policy Priorities
Freedom for Family Caregiving Act - Paid Family Caregiving: Part 1 - (HB712 / SB1178)
For years, TennCare has effectively prohibited the payment of family caregivers for the care they provide to their loved one with a disability – both through formal and informal means – even when the state has failed to provide promised home- and community-based services. This discriminatory practice has exacerbated the workforce crisis, heaped substantial responsibility for care onto family members and actively harmed Tennesseans with disabilities and their loved ones.
This bill would prohibit TennCare from creating policies that discriminate against family caregivers in the ability for local provider agencies to hire them as Direct Support Workers (DSP’s). The bill also requires TennCare to compile and publicly share a document that outlines the procedure for provider agencies to hire and supervise family caregivers. Essentially, the bill creates a reliable pathway for a family member – including parents – to be paid for providing care to a loved one with a disability.
The goal of this legislation is to provide some degree of financial relief to family caregivers, while ending a discriminatory hiring prohibition. This also sets the stage for “Part 2” legislation next year, which would provide opportunities for family caregivers to gain care skills, or certify existing care skills, and receive appropriate compensation for that work.
The Freedom for Family Caring Act Policy Video
Post-Session Update: This bill passed! Though not without an unwelcome amendment from the Department of Disability and Aging (DDA). The amendment changed the language of the bill as it relates to conservators. In our language, the bill permitted conservators to be hired as family caregivers unless it was prohibited in the conservatorship agreement. DDA's change permits conservators to be hired as family caregivers if it is explicitly permitted in the conservatorship agreement. To be clear, this was an unwelcome change, but one that we had to agree to in order to pass the bill. TDC and our partners will be working over the summer to accommodate this language, so stay tuned for details.
This bill only represents the beginning of the effort to establish a comprehensive statewide paid family caregiving program in Tennessee. The purpose of this bill was to make it explicitly legal and acceptable for provider agencies to hire and pay family caregivers. That means that it did not necessarily establish or construct any program, just that we now have the foundation from which to do just that. And that's what we will do. We are working with our organizational partners and members of the community to determine what that end-state should look like, and what our next steps toward that goal should be.
TennCare Network Reporting Reform - (HB711 / SB706)
Currently, TennCare must report the quality of their provider network – doctors and specialists who treat patients enrolled in a TennCare program – based on several outdated and misleading indicators. These data points are things like the amount of time it takes a person to drive to a providers office or the distance between a TennCare enrollee and a TennCare provider. These statistics do not account for the actual care, supports and services that a person receives, only whether or not a provider is within the required time and distance standard.
This means that many TennCare members – those in ECF CHOICES or CHOICES or Katie Beckett, for example – may live in an area where they cannot access necessary care or home-and community-based services (HCBS) or long-term supports and services (LTSS). However, because TennCare reports network adequacy using outdated metrics, it appears as though TennCare has done enough to ensure that member has access to care. This leads to long wait times for appointments, services promised by the state that never arrive and negative outcomes for people with disabilities.
This bill would change the network adequacy reporting standard from the supply side – time and distance between members and providers – to the demand side – if people are actually able to receive the care and services that are promised to them. The bill would require TennCare to publicly report percent service utilization (what percent of promised services did members actually get), time between approval for a service and delivery of that service, and appointment wait times. The data is also required to be broken down by county, TennCare program and demographics.
The goal of this legislation is to highlight the fact that many TennCare enrollees do not actually receive the extent of services promised to them by the state. By bringing to light what we anecdotally know to be an inadequate provider network, the disability community and our allies can push TennCare to do more to improve the provider network and thus, improve access to care and services.
TennCare Network Reporting Reform Policy Video
Post-Session Update: this bill did not pass, but it did not fail either! According to TennCare, the bill would have cost the state $4.5 million in one-time costs to implement, in addition to $1.5 million per year to publish such data. We strongly disagreed and disagree with this assessment - the bill only asks for TennCare and its Managed Care partners (like Blue Cross Blue Shield, UnitedHealthcare and Wellpoint) to publish 4 data points in an unformatted spreadsheet. However, this cost severely diminished the likelihood that we could pass the bill. To be clear, TennCare DID NOT want this bill to pass. They made several bad-faith efforts to work with us on a compromise, and we indeed accepted two successive amendment proposals from TennCare, but ulimately it was not enough for them to pull back on their opposition.
The bill was popular on its merits, and received plenty of affirmative support from lawmakers. However, in our increasingly tough state budget times, we could not gain enough support to account for that cost. Thus, the bill passed all relevant committees, but was not included in the final General Assembly budget. That doesn't mean the bill has failed, it will be eligible for discussion in the respective House and Senate Finance committees next year, where we can make the case that the General Assembly should budget funds to implement. We have options in the meantime: we can change the bill to lower the cost, we can limit the timeframe of the bill, we can request a 1-year study, or we can consider how we can highlight TennCare's network inadequacy in another way.
Katie Beckett Part A HRA - (HB1158 / SB1053)
As part of its design, the Katie Beckett program is broken into two parts: Part A and Part B. Part B is considered a “Medicaid Diversion” program, which offers enrollees $10,000 to help pay for home- and community-based services (HCBS). These funds are utilized via a Health Reimbursement Account (HRA) – a member buys and item under the program, sends in a receipt, and is reimbursed for the expense, up to $10,000.
Part A enrollees receive up to $15,000 in home- and community-based “wraparound” services, but these are administered differently from the funds in Part B. Part A enrollees must go through a Managed Care Organization (MCO) like Blue Cross Blue Shield, Wellpoint or UnitedHealthCare to purchase HCBS items. Since the beginning of the Katie Beckett program in Tennessee, this process has shown itself to be difficult, wasteful and unhelpful.
This bill would change how Part A enrollees are able to utilize their HCBS funding, from MCO to HRA. We believe that this would allow families far greater flexibility in making choices about the care of their loved one with a disability, and would allow them to use their HCBS funds in more effective and efficient ways. It is also possible that this bill contains other “fixes” for issues in both Part A and Part B of the Katie Beckett program. Any further policies included in this bill would be at the discretion of the legislative sponsors.
Katie Beckett Part A HRA Policy Video
Post-Session Update: this bill also did not pass, but did not fail. It too had a large fiscal note (estimate of its cost) provided by TennCare. TennCare asserted that if all 300 families enrolled in the state's Katie Beckett Part A program utilized the full $15,000 available in that benefit, they would not have enough money in their budget to do so. This is egregious mismanagement of the $25 million annual budget for the Part A program. They likewise argued that this bill, should it pass, would create "systemic inequities" in the Medicaid system, which we also don't agree with. However, the bill created quite a stir on the House side, as advocates revealed the broad up-charging by TennCare vendors (hired through MCO's). The House Insurance Committee demanded that TennCare testify to account for these issues, and the members of the committee did not hold back their displeasure.
Ultimately though, the cost of the bill was not accounted for in the final General Assembly budget. This bill is also eligible to be heard in the respective Finance Committees next year, and here is where we will make the case that the state should fund this effort. Because this bill was popular, and the issues around the program were well-understood by our legislators, it is unlikely that we would have to significantly change the bill for it to have a better chance at funding. This will require the community to demonstrate its support for the bill and to lobby our legislators about its importance.
In this webinar, TDC's Director of Public Policy, Jeff Strand, discusses the current state of the legislature, TDC's 2025 policy priorities, and things folks should know heading into Disability Day on the Hill 2025.
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