Personal Impact
ELLIE, MISSOURE
Ellie, a 25-year-old who recently earned a law degree, lives in Missouri and has been enrolled in Medicaid since age 18. As someone with spinal muscular atrophy, Ellie requires a wheelchair and assistance with daily activities, such as getting in and out of bed, using the restroom, and getting dressed—including overnight support. Since she was young, Ellie’s goal was to move out of her parents’ home to pursue a career and live on her own.
​
The Ticket to Work Health Assurance (TWHA) program, Missouri’s MBI for Workers with Disabilities program, gave her that opportunity to be more independent. However, Ellie has experienced challenges obtaining necessary services, such as personal care assistance, due to difficulties navigating the complex system and a lack of clear, helpful resources.
Introducing the issue
Understanding the Financial Implications:
A spinal cord injury, especially high tetraplegia, can lead to staggering medical costs. The first year post-injury can see expenses exceeding $1.3 million.
Every year thereafter, it can cost over $228,000.
With over 6,000 Tennesseans battling some form of spinal cord injury, the economic impact is palpable across the state.
Understanding the Financial Implications:
Individuals like myself lean heavily on state-sponsored aid such as Medicaid to offset exorbitant medical expenses.
In Tennessee, Medicaid eligibility criteria restrict many from seeking employment or even marriage. To qualify, one's resources must remain below $2,000 and their annual income below $19,392, causing many to make difficult life choices.
Employment vs. Essential Benefits:
Without a Medicaid Buy-In Program in Tennessee, individuals are often forced into making heartbreaking decisions.
The absence of such a program forces us to choose between pursuing employment (and family life) or retaining life-saving Medicaid benefits.
There's a pressing need for a system that understands and respects both our professional aspirations and the essential caregiving requirements without forcing sacrifices on personal and familial fronts.
The Facts
Life Time Costs
Average Yearly Expenses
(in 2014 dollars)
Estimated Lifetime Costs by
Age At Injury (discounted at 2%)
Severity of Injury |
|---|
Motor Functional at Any level AIS D |
Paraplegia AIS ABC |
Low Tetraplegia ( C5-C8 ) AIS ABC |
High Tetraplegia ( C1-C4 ) AIS ABC |
First Year | Each Subsequent Year |
|---|---|
$347,484 | $42,206 |
$518,904 | $68,739 |
$769,351 | $113,423 |
$1,064,716 | $184,891 |
25 Years Old | 50 Years Old |
|---|---|
$1,578,274 | $1,113,990 |
$2,310,104 | $1,516,052 |
$3,451,781 | $2,123,154 |
$4,724,181 | $2,596,329 |
National Scale
2023 Disability Longterm services-supports ranks
Family Caregiving Support
Affordability Of Care
Aging
Transportation
Early Intervention
Education
Mental Health Access
Employment
Housing
Tennessee’s Overall Grade
A Difficult Choice
The Pathway to TennCare bill health care coverage for people with disabilities who are working and whose earnings and resources might otherwise make them ineligible for Medicaid.
.png)
Employment & Marriage
Restrictive income and asset eligibility limits prevent married and employed people with disabilities from receiving the critical Medicaid benefits they need.
.png)
Disability
$100,000 per year of medical and caregiving expenses
.png)
.png)
Unemployed & Single
In order to get around those limits, people with disabilities often forgo employment and marriage to afford the medical care they need.
.png){kind=small}
WHAT CAN WE DO
The TennCare for Working Individuals with Disabilities Act offers health care coverage to people with disabilities who are working and whose earnings and resources might otherwise make them ineligible for Medicaid.
Empowering Tennessee: The Case for TennCare for Working Individuals with Disabilities Act
High Costs with Limited Support
Individuals with disabilities often face annual expenses exceeding 100 000 a burden significantly lightened by Medicaid support
.png){kind=small}
> $100,000+ / yr.
Healthcare Livelihood: A Stark Choice
Individuals with disabilities are forced to choose between maintaining essential healthcare coverage and pursuing economic self-sufficiency. This choice hinders their potential to work, save, and invest in their futures.
Income: < $2,829 / mo.
.png){kind=small}
Assets: < $2,000
.png)
Bridging the Employment and Marriage Gap
These employment and marriage disparities highlight the need for systemic changes that support the aspirations of people with disabilities for work and family life without the fear of losing their healthcare benefits.
%Employed
Able-Bodied
75%
Disabied
37%
%Married
Able-Bodied
75%
Disabied
37%
An Opportunity for Inclusion
Tennessee remains one of the only four states without a TennCare for Working Individuals with Disabilities Act, placing it behind in fostering a diverse and inclusive workforce. Such a program would serve as a gateway for individuals with disabilities to contribute meaningfully to the economy while retaining their healthcare coverage, effectively closing the gap towards full social integration.
Want to Help?
The Solution
What is a Pathway to TennCare?
A Pathway to TennCare is a state-driven initiative that allows workers with disabilities a pathway into Medicaid. This means they can earn income above traditional Medicaid limits while still accessing vital health services.
Addressing the Employment Dilemma
Many people with disabilities face a catch-22: work and lose Medicaid, or don't work and keep it. The Buy-In program breaks this cycle, enabling individuals to work, earn, and still retain their healthcare benefits.
Economic and Social Implications
The program isn't just beneficial for individuals. It's a win-win for states too. As participants earn more, they pay higher premiums, contribute more in taxes, and rely less on other social services.
What is a Medicaid Buy-In Program?
A Medicaid Buy-In Program is a state-driven initiative that allows workers with disabilities to "buy into" Medicaid. This means they can earn income above traditional Medicaid limits while still accessing vital health services.
Addressing the Employment Dilemma
Many people with disabilities face a catch-22: work and lose Medicaid, or don't work and keep it. The Buy-In program breaks this cycle, enabling individuals to work, earn, and still retain their healthcare benefits.
National Outcomes
2023 US STATE MEDICAID BUY_IN ADOPTION
.png)
STATE BY STATE TRENDS
These programs are thoughtfully integrated into state Medicaid plans to enhance the lives of disabled individuals and strengthen the program’s sustainability.
Rather than a broad expansion, these programs are carefully designed with income and asset limits that encourage employment among disabled individuals without compromising their access to necessary medical coverage.
Contrary to the belief that this is a major expansion of Medicaid, these programs cater to those who might otherwise limit their income and assets to qualify for traditional Medicaid. The program serves as a more strategic option that supports the disabled workforce and contributes to Medicaid’s efficiency.
Advocacy has been crucial in program adoption, shaping state policies to support disabled individuals’ employment and reduce dependency on public aid.
Pathway to TennCare eligibility criteria offer a progressive approach to healthcare coverage, ensuring that people with disabilities are not solely dependent on public programs and can seek employment and personal growth.
KEY OUTCOMES
Pathway to TennCare leads to more job opportunities for the disabled.
Enrollees earn more, benefiting state budgets.
A University of Kansas study found that program participants enjoy better living standards with reduced Medicaid costs.
Participants gain skills and autonomy, reducing reliance on public funds.
Program ensures support for a workforce inclusive of those with healthcare needs.
NATIONAL MODELS
46 states have incorporated the MBI program into their Medicaid framework, with the majority implementing it during the MIG era.
8 states have removed income limits, and at least 2 more are in the process of doing so.
19 states have either removed asset/resource limits or have provisions for no limits on earnings. Additionally, at least 2 states are working towards removing these limits.
States are progressively enhancing access by raising or eliminating limits on earnings, incorporating workers with disabilities aged 65 and above, and introducing grace periods or continuous coverage for those facing temporary employment interruptions.
National Scale
Offers Pathway to Medicaid Program
Does not offer Pathway to Medicaid program
Gameplan
Join the Movement & Raise Awareness:
Commit:
Pledge to advocate for a Medicaid buy-in for workers with disabilities in Tennessee.
Engage:
Launch a comprehensive social media campaign to spread the word. Share personal stories to humanize the issue.
Collaborate:
Partner with influencers, local celebrities, and organizations like United Spinal and the Tennessee Disability Coalition to amplify our message.
Engage with Stakeholders & Medicaid Staff:
Town Halls:
Organize town hall meetings to discuss challenges faced by individuals with disabilities.
Engage Medicaid Staff:
Collaborate with Medicaid staff to estimate the fiscal impact and potential transitions.
Stakeholder Engagement:
Prioritize residents with disabilities who aspire to work. Engage with local and state representatives to gain their support.
Research, Data Collection & Relevant Studies:
Surveys:
Use our website survey to gather firsthand experience. Your feedback is invaluable.
Studies:
Delve into studies from states with successful Medicaid buy-in programs, analyzing their strategies and outcomes.
Data Analysis:
Understand the challenges faced by individuals with disabilities in the state and build a compelling case for its implementation in Tennessee.
Legislative Action & CMS Engagement:
Bill Draft:
With the bill draft ready, actively lobby with state representatives and senators for support in the upcoming January session.
Engage CMS:
Inform and collaborate with CMS on our plan. When ready, submit a Medicaid State Plan Amendment (SPA) through the MACPro system.
Funding Sources & Infrastructure Needs:
Funding:
Explore GoFundMe, social media campaigns, grants, local partnerships, community fundraisers, and major donors.
Infrastructure:
Identify IT changes, staff training, and federal resources. Develop an outreach strategy promoting employment for people with disabilities.
Continuous Engagement & Presence:
Updates:
All updates will be available on our website. We’ll be present at Disability Day on the Hill in January.
Engage the Community:
Regularly update the community on the progress of our advocacy efforts and keep the momentum going.
Optimize Inclusiveness & Program Elements:
Program Elements:
Set policies considering career-minded, entry-level, part-time workers, youth transitioning (age 16–18), and older workers (65+).
Inclusiveness:
Utilize both work incentives and ticket-to-work authorities. States can have higher or no income or asset limits for these groups.
Survey
Join our advocacy efforts. Your voice matters!
We're on a mission to advocate for a brighter future for individuals with disabilities in Tennessee. To make impactful changes, we need to understand your experiences and perspectives. By participating in our survey, you're taking a significant step towards creating a more inclusive Tennessee. Thank you for being a part of this transformative journey. Together, we can advocate for a brighter, more inclusive future for all.
Ready to make a difference? Click the button below to head over to our survey. It only takes a few minutes, but your insights can drive lasting change.
Message From Me
Before my injury, I was working within the healthcare industry and enjoying hobbies such as golf, guitar, sports and other outdoor activities with my wife and our big golden-doodle, Rory. Today, I am on a path of recovery and rehabilitation, doing physical and occupational therapy sessions four times a week at Vanderbilt and at a private center, doing water therapy, FES cycling and doing whatever it takes to restore motor function. I am also a big advocate of adaptive golf and plan to launch a MusicCityWheels adaptive golf tournament next spring.
​
I am blessed with a supportive family and have been living in Nashville since I graduated from Vanderbilt in 2013. While at Vanderbilt, I majored in Economics while also playing football. I’ve grown to love this community and its spirit and my journey has also introduced me to incredible mentors who have been a guiding light in my advocacy efforts. Although this was an unexpected twist in my journey and changed many aspects of my life, it hasn't dampened my spirit or drive. This experience has underscored the significance of self-advocacy and determination.
​
My mission now extends beyond personal recovery. I am mentoring others with similar injuries, aiming to develop a platform to inspire and spark change. One of my primary goals is to advocate for the implementation of a Medicaid Buy-In Program for Tennessee, which would greatly benefit individuals with disabilities like mine.
Stakeholders
Stakeholders play a pivotal role in shaping the future of the Medicaid Buy-In Program in Tennessee. Below, we highlight the key individuals and organizations actively contributing to and influencing this transformative initiative.
United Spinal Association
Tennessee Disability Coalition
Senator Bo Watson
Rep. Tim Hicks
NextStep Nashville
Music City Wheels