Medicaid Cuts in Health Care for Persons With Developmental Disabilities in Tennessee: Perspective From the Field

Abstract

As a physical therapy practitioner who primarily works with persons who have developmental disabilities, I have become increasingly dismayed at the Medicaid cutbacks in Tennessee, the state in which I practice. I am confident that this is also the case in many other states that face budget shortfalls due to the current economic downturn. However, in Tennessee, this has been ongoing for more than just the past year or so. Medicaid has been on the chopping block for approximately the past 6 years. A position statement adopted by the Arc and the American Association on Intellectual and Developmental Disabilities (AAIDD) maintains that “Medicaid reform should address wait lists, the quality of service, providers and staff, and increased availability of quality health care services for individuals with intellectual and/or developmental disabilities” (AAIDD/The Arc of the United States, 2008). It is extremely disheartening to read this proclamation and realize that just the opposite is occurring. Although everyone with a developmental disability does not have Medicaid, the majority of the individuals I see in Tennessee with developmental disabilities have Medicaid as their primary insurance, and for others it may be a secondary source of payment.The Medicaid program in Tennessee has been given the designation of TennCare and is billed as Tennessee's expanded Medicaid program. There is also a special statewide Medicaid Waiver program to assist some individuals over age 21 years with an intellectual disability who are deemed eligible, in addition to the TennCare Medicaid program. The TennCare plan is administered by several insurance entities, such as Blue Cross Blue Shield of Tennessee (BlueCare) and United Healthcare (Americhoice TennCare). TennCare currently covers 1.2 million residents in Tennessee and uses a managed care model (TennCare Overview, n.d.). According to professionals at the state TennCare Budget Presentation at the 106th General Assembly Legislative Budget Hearings (2010), states around the country are facing a $180 billion shortfall for Medicaid spending this year, and many are cutting back on services.It is apparent to me that TennCare was already underfunded prior to the nascent recession. Clients I have served over the past 5 years who rely on TennCare or Medicaid Waiver to reimburse for services such as therapy or nursing have continually faced threats that his or her services would be cut or eliminated entirely. In addition, these individuals and their families or caregivers have had problems finding physicians who accept TennCare; locating specialists to treat them is especially problematic. Other individuals I have seen have been denied needed devices, such as wheelchairs. Still others have been dropped from TennCare altogether and are unable to afford services. If service providers who accept TennCare can be found, delays in service are not uncommon. The added emotional stress and privation placed on the person with the developmental disability and his or her family and caregivers when services are not readily available, or are denied outright, can be immense. Families and other advocates must battle TennCare to merely preserve current levels of services, much less improve on what has been offered up until now. I have heard stories of families who are told by TennCare representatives that their son or daughter no longer qualifies for services such as in-home skilled nursing care. When the family member responds that they work during the day and cannot care for their loved one, the TennCare representative would counter that another family member could care for the individual. How can another family member be expected to be available 40 or more hours per week to care for an individual who has severe disabilities? Furthermore, many of the children and adults I see are cared for by a single parent. I am aware of several persons with developmental disabilities who have faced restrictions on their care, even though they are medically fragile and require complex skilled care or observation, necessitating around the clock care.The Tennessee Justice Center is a nonprofit organization and public policy advocacy group for the poor in the state of Tennessee. This organization's primary emphasis is on issues that affect the “basic necessities of life” (Tennessee TennCare, n.d.). Included in their agenda is the issue of health care availability for individuals who are poor and affected by cutbacks in funding for TennCare. This organization has been critical of the state government, Governor Phil Bredesen in particular, and the manner in which TennCare cutbacks have exacted a toll on the lives and health of impoverished persons around the state. As the person at the center of this criticism, Governor Bredesen seems to have all but eviscerated TennCare since taking office in 2003. Instances of protests against TennCare cutbacks can be found as far back as 2004. Governor Bredesen has been relentless in pursuing major reductions in services that affect the poor across the state. He has incurred national scrutiny on the state of Tennessee for his Draconian measures. In 2005, Edelman, president of the Children's Defense Organization, opined,In another scathing analysis of the TennCare cuts proposed by Governor Bredesen in 2005, Herbert (2005), a columnist with The New York Times, lamented that “what is happening in Tennessee is profoundly cruel,” noting that the people losing TennCare are mostly working poor, some with serious illnesses, with no way to afford private insurance.The court case John B. v. Goetz (1998), which involves families and Medicaid recipients as plaintiffs and the state of Tennessee as the defendant, was litigated and settled over 10 years ago. In this ruling, TennCare was found to be noncompliant with federal TennCare guidelines as early as 1998. The gist of the settlement was that the state did not abide by a federal regulation mandating early periodic screening diagnoses and treatment. More recently, as late as 2007, independent monitors have found that the state continues to be noncompliant with federal mandates.It is unfortunate that even though 600,000 children have been kept on the TennCare rolls, the level of services they receive continues to be substandard. The state claims to cover all kids; however, reimbursement is so poor that that health care providers are loathe to accept Medicaid assignment. Notwithstanding, the children have fared better than adults. As mentioned earlier in this paper, in 2005 over 300.000 300,000 adults were cut from the TennCare rolls (Tennessee TennCare, n.d.). As a matter of course, the adults remaining in this system have been subjected to the same limitations as the children under age 21 with respect to rationing of services.One can only hope that, notwithstanding hard economic times, there will be some reversal in this pattern of slashing TennCare payments and the denial of services. It is my hope that other states do not replicate Tennessee's model. If the Medicaid system is not changed in Tennessee, or if people with or without intellectual disabilities with significant medical needs cannot find affordable health care but are not given another choice for affordable health care, the adversity that has come their way is unlikely to diminish. With all of the trepidation evinced by the general public regarding the creation of affordable, quality health care that will not bankrupt our country, there are exceedingly hard choices that need to be made. Yet, can we ethically deny services to some of the most vulnerable individuals among us, such as children and adults with intellectual and developmental disabilities? When addressing their constituents or the public, politicians may use terms such as unpopular, challenging, or burdensome when describing cutbacks to Medicaid programs. One must remember that individuals with disabilities are not inanimate objects and are severely affected by the decisions rendered by federal and state government. Although budget constraints need to be dealt with, individuals who are poor seem to suffer disproportionately. Our fiscal priorities should reflect the basic needs of all, not just the rich or well connected. In Tennessee, a new administration will begin in 2011, and one must have expectations that TennCare can and will change for the better. Perhaps, the Affordable Care Act passed last March by the federal government will remedy at least some of Tennessee's health care inequities. With a bit of luck, Tennessee will react in a rational and principled manner to the new legislation by the federal government that seeks to restore funding to the states to back Medicaid in an attempt to boost Medicaid budgets as well as offer affordable health care outside of the Medicaid system. Will Tennessee act in a manner that will help or hinder the recent policies of the federal government to work toward the provision of universal health care?