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Newberry v. Goetz 3:98-1127

Patty knows how important home health care is: Her son, Mitchum, a Newberry class member, was abused in an out-of-state nursing home.  Patty worked to get that nursing home shut down and promised that Mitchum would never again go to a nursing home.  She struggled for months trying to get the home health services Mitchum needed.  Finally, with TJC’s help, Mitchum began getting the care he needed. Photo by Jennifer Dick, volunteer photographer

• You are a young adult with cerebral palsy.  When you were young, your parents were able to give you the care you needed.  Now that all of you are older, they are not physically capable of giving you the assistance you need.  Your mind is active.  You want to finish college and find a job.  You just need a home health aide who can come to your home each morning to help you get out of bed and get ready for the day.  Your doctor ordered these services from a home health agency.  TennCare said they would not cover the care because you are not “homebound.”

• You have debilitating arthritis that has made you blind and bed-bound for more than 10 years.  Your spirit and sense of humor are unbroken.  You want to remain in the home in which you raised your children, near your family, neighbors and friends whom you have known for a lifetime.  You need a home health aide to come to your home daily to bathe you and help you use the toilet.  Without this care, you develop bed sores and are at risk for serious infections.  Your doctor orders the care for you.  TennCare tells you it is not “medically necessary.”

• You are a child with cerebral palsy, blindness and developmental delays.  You enjoy listening to country music, touching new toys and hearing your baby brother laugh.  Your doctor believes that speech and physical therapy given to you in your home will help you develop to your fullest potential.  TennCare refuses to cover this care for you.

• You were diagnosed with Lou Gehrig’s disease, also known as ALS, years ago.  As the disease progressed and you slowly lost functioning in each part of your body, you decided that you would live life to its fullest anyway.  When your body could no longer breathe on its own, your doctor put you on a ventilator so that the machine could breathe for you.  With the few facial muscles that you can control, you are able to communicate with your beloved family and to control a computer device that allows you to speak to the world.  Your ventilator can become clogged with mucus at any time or you could experience respiratory distress.  You need a nurse to be awake and with you to help you survive such a situation.  Your doctor orders this care for you.  TennCare denies the care saying it is “long term care”—claiming that TennCare would only cover short term home health services.  TennCare says you should go to a nursing home.  You refuse to leave your home, family and community where you lead an active life.

TJC filed the Newberry case after hearing these four stories and many more just like them.  The Newberry case was brought by five named plaintiffs on behalf of all those enrolled in TennCare who have a medical need for home health services, including home health aides, private duty nursing, and physical, occupational or speech therapies that must be performed in the home. This action was filed after TJC interviewed numerous clients who needed home health care and were illegally denied this care by TennCare and its contractors. To read the story of one of the Newberry named plaintiffs, Marvin Berry, click here.

Betty and Mike had trouble getting home health services and medications for their son, Mikey, a Newberry class member. TJC worked to keep Mikey's care in place, so that he was safe and his family stayed together. Photo by Jay Watson, volunteer photographer

When disabled and medically fragile people cannot get home health care, they must either continue to live in their homes with grave risk to their health, or be consigned to institutions away from their homes, families and communities. TJC filed this federal class action suit to challenge Tennessee’s policies and practices which condemn people with disabilities to lives of wasteful, inhumane and needless institutionalization in nursing homes.

While TJC was in the midst of litigating this case, the State proposed to eliminate coverage of private duty nursing completely and also to limit home health visits to 125 per year. Instead of improving the state’s policies, these changes would have forced even more people to choose between living at home with their health at risk and living in an institution.

The case was set for trial in March 2003. On the eve of trial, the State approached TJC and asked to postpone the trial in order to negotiate settlement. TJC agreed with the hope and belief that a negotiated settlement would better protect the plaintiffs’ needs and rights.

After months of negotiation, TJC and the State reached an agreement in the fall of 2003. The State agreed to withdraw the proposed reductions in home health and other benefits provided to enrollees. Specifically, the State would not pursue cuts to private duty nursing or the proposed 125 visit limit on home health care. The State also promised to develop budget neutral community-based alternatives for enrollees who require long-term nursing home care.

TJC continues to work with the State to create cost-effective programs so that Tennesseans who are elderly or have disabilities can remain in their homes and communities.

Agreed Order (October 2003) (pdf)

Complaint (December 1998) (pdf)

Read about other opposition to Tennessee's health care policies.

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