Recently a member of the Williamson County Democratic Party shared with us a letter that they had sent to several of our representatives concerning Governor Lee's Medicaid Block Grant Proposal. We urge everyone to take note of the issues surrounding this proposal and hope that you too will contact your state representatives and share your concerns.
I am deeply concerned about the threat that the Medicaid block grant proposal poses to people with disabilities in our state. I'm also concerned about other populations served by TennCare as well, but as the parent of a young adult with autism and an intellectual disability, individuals with disabilities are the ones that I worry the most about.
- There are currently about 7,000 people with intellectual and developmental disabilities on the "referral list" for the Employment and Community First CHOICES waiver program. Yet ECF CHOICES is included in the block grant. Block grant funding will make it harder to expand services or serve additional people. So what happens to those 7,000 and the growing numbers of individuals with autism? Our state's autism prevalence rate THIS YEAR is 1 in 64 8-year-olds. Many of those children will need access to long-term supports and services, particularly when they reach adulthood. The state has not been overly generous in adding more funding to address the referral list over the years and without the federal match the situation will only become worse.
- I realize that the proposal "carves out" the three waivers administered by the Department of Intellectual and Development Disabilities, but this does not address the individuals on the current "referral list," and that individuals with intellectual disabilities in DIDD services will still be impacted by any changes to health services.
- While the new Katie Beckett Program will not be included in the block grant for the first three years of operation, after that time, the funding needed for operations (whether or not enrollment is at full capacity) will be through the block grant. Again, block grant funding will make it hard to expand services or serve additional children.
- Tennessee is asking to be exempt from future federal Medicaid mandates. This means that if the federal government mandated that states cover a particular medication or provide a new type of service, Tennessee would be exempt from that rule and not have to do so. This is likely to hurt people with disabilities in particular. Changes to the Early Prevention, Screening, Diagnosis and Treatment mandate are just one example.
- Tennessee is currently required to cover all prescription medications included in the federal Medicaid drug rebate program. The move to a commercial-style closed prescription drug formulary, as you are well aware, could limit prescriptions covered, in particular specialty medications needed by a small group of people, again, particularly for those with disabilities. For example, people who are dually diagnosed with an intellectual or developmental disability and a mental illness do not always respond in the same way to the drugs used to treat many common mental illnesses. It often requires a great deal of trial and error with many medications, and the consequence of not finding the "right" medication often means very significant behavior challenges that will only increase costs to the system over time. And the idea of having one drug available for a particular condition would be disastrous for this population. My son has already been treated with and failed with five atypical antipsychotic medications, and he's now on his sixth.
- The federal Medicaid comparability requirement means that covered benefits must be the same for all covered populations. Tennessee is asking to waive this requirement, which would allow TennCare to vary the types of benefits that are available to different types of patients. This request is truly terrifying. This could prevent an individual beneficiary from accessing the types of services he or she needs. Historically, people with disabilities have been a lower priority than other populations and have been adversely affected by cuts to services.
- Tennessee is asking to never have to reapply or have TennCare re-evaluated by the federal government. This would remove oversight of the program. Federal oversight has traditionally been critical to protecting people with disabilities. I have seen over and over how critical federal oversight is in the educational realm, through the Individuals with Disabilities Education Act. Tennessee's own Arlington and Clover Bottom lawsuits regarding institutionalization had federal monitoring until the suits were settled, in order to ensure the protection of the rights of people with disabilities. Please don't jettison these protections!
- Tennessee is asking to be able to make changes to the benefits it provides, TennCare enrollment processes and service delivery systems without federal government approval or oversight. Again, federal oversight has traditionally been critical to protecting people with disabilities.
Can you understand how difficult it is for families like mine to hear our state brag about how much money Tennessee has saved with TennCare over the years, but yet for nearly 20 years there have been 6,000-7,000 people with intellectual or developmental disabilities waiting for needed services? (Our son was on the waiting list for 11 years.) Was that right?
Nationally, about 25% of individuals with intellectual and developmental disabilities receive home- and community-based services through their states' Medicaid waivers. The average in Tennessee is about 7%. Is that right?
I talk with families of children and adults with significant disabilities nearly every day who cannot get the appropriate supports and services, even though they are on TennCare or on Employment and Community First CHOICES. Is that the way it's supposed to be?
You and our state legislators have asked the people of Tennessee to trust you to do what's right for Tennesseans. Do you understand why we in the disability community have deep concerns that this proposal will disproportionately negatively affect those with disabilities?
I would ask that, if possible, the waiver amendment proposal to block grant Medicaid not be sent to the Centers for Medicare and Medicaid Services.
Thank you for your continued commitment to the people of Tennessee.